The Big "C"

Top 10 Reasons to Come to Friday Night Fun for Funding

2010-09-26T21:23:00.000-06:00

(and a few are reasons to donate online if you can't make it)

10. You've been looking for a reason to go out for a night but have been worried that you wouldn't have enough fun to justify the effort of getting a babysitter and setting your Tivo.

Worry no longer: It's going to be a great time.

9. Spare Keys is a very cool place, and I don't know of another place where you can bowl that I would describe as "very cool."

8. Speaking of bowling: You'll roll for free. And eat appetizers for free, too, if you get there before they're gone.

7. You need another T-shirt with a clever logo on it that you will have to explain to others.

But it will be a great act of service to explain it, because we want to spread the word far and wide about an excellent foundation that assures every last dime of your money actually sees the inside of a cancer research laboratory.

6. The event is in October, when the country and our athletes are draped in pink ribbons. But there's a lot of other cancer, too. Damon Runyon funds research into all cancers.

5. Speaking of pink ribbons, giving money to Damon Runyon--where ALL donations actually fund pre-clinical research--also makes a statement:

We're aware. OK? We all know that there's cancer in our world. Can we turn our attention away from ribbons and use our resources to find the cure now? Please?

4. Speaking of the cure: Scientists will find it. As surely as they discovered the process of vaccination, or the physiology of microbes, or the fact that blood letting doesn't actually, you know, work, they will also figure out what cancer cells are, why they form and how to kill them without harming the host.

The question is, "When?"

Will it be in time for my daughter to experience a different treatment if she is diagnosed 25 years from now? Will it be in time for her daughter?

Funding real research now can only do one thing: get us to the cure sooner than we would get there otherwise.

3. The Damon Runyon website is spiffy. It features video of several of their scientists describing their current work and why they're doing it. Some of those spots make me cry, they are just so hope-filled and courageous.

The website also features monthly updates of all the research Damon Runyon fellows have published. Reading these updates paints a picture for me of how research happens: bit by bit, each scientist bringing a little piece of the puzzle to the table. . .

It was a Damon Runyon scientist's puzzle piece that Dr. John Slamon used to develop Herceptin, the revolutionary drug for my type of breast cancer that raised the survival rate from 23% to 83%.

There are more revolutionary treatments out there for other cancers, too. We can be a part of finding the puzzle pieces that lead to them.

2. You all know and love someone who has been diagnosed with cancer. Take it from me: every card and e-mail and flower you sent, every prayer you lifted, every work of encouragement you offered, every tear you shed--all of it helped that special person.

Giving money now to Damon Runyon is above and beyond the love you've already shared. But giving money to Damon Runyon is going to feel good. Because all the love and support you gave to your friend or family member probably felt like you were playing defense in a time of crisis.

Giving money to fund the research that will end cancer will feel like you are finally taking the offensive and throwing a punch instead of blocking so many of them.

1. Are Top 10 lists supposed to get this wordy? Here's a final, short reason to come to Friday Night Fun for Funding:

A fun night out for a truly worthy cause. Where else would you like to be?

2010-09-23T15:19:00.000-06:00

Question:

If you had mountains of money at your disposal to develop the cure for cancer, how would you spend it?

My name is Amy Ferrone Ponce, and I am a breast cancer champion. Last year, as I was undergoing radical surgery, aggressive chemotherapy and prolonged radiation. This blog is a record of that year. One thing I never wrote down, though, was this very question. But I asked it often.

Pre-Clinical Research.

Any cure for cancer will come from an idea that has been tested by research before it is applied to patients in a clinic. It's called pre-clinical research and it is the hardest to fund because no one knows which ideas will amount to something before the research is done.

Drug companies aren't interested. Government grant agencies aren't interested.

And yet, without pre-clinical research, where will the next innovation in cancer treatment come from?

There is a foundation that funds only pre-clinical research for all types of cancer, and they have a track record of picking scientists who produce award-winning and life-saving results. At http://www.damonrunyon.org/ you can see what research is now happening, you can read the published results Foundation fellows have achieved, and you can take heart: Brilliant people are getting closer and closer to the cure for all cancers.

Friday Night, October 8!
Spare Keys
Elmhurst, IL

My friends and I are planning a Friday Night Fun for Funding. Please consider adding us to your weekend plans on Friday, October 8. There will be free bowling, free food and free t-shirts--it will be a whole lot of fun with a whole lot of friends all in support of a very effective foundation.

ALL money collected will go to the Damon Runyon Cancer Research Foundation.

And ALL donations they receive go directly to fund scientists.

(Damon Runyon has a Broadway ticket selling program that raises all the revenue required to run the Foundation.)

Your money won't pay for "administrative costs" of some massive organization.

It won't go towards "awareness" efforts.

It won't put a colored ribbon on your bumper.

Every penny you give will fund the research that inches us closer to the cure.

And you'll be able to read their results for yourself online.

My husband, two young children and I are now living what we hope is a cancer-free life. Damon Runyon research was instrumental in developing the medicine that helped get us here. I hope you will join us for a fun night that will help others get to a cancer-free life, too.

Please spread the word. Come with a bunch of friends. Let's have a FUN night for FUNDING.

Or, if you can't make it, please consider donating online. If you note "Friday Night Fun" on your form, Damon Runyon people will keep us apprised.

2010-09-23T15:07:00.000-06:00

I'm still alive. That makes me a survivor.

I want to be part of the effort to develop a cure for all cancers.
To make "slash, poison and burn" an anachronism.
To relegate cancer to the history books right next to polio and small pox.

This makes me a champion. And all of you who prayed for me, sent me cards and e-mail and flowers and fruit, who told me that my wig looked great (when, come on: no, it didn't), who sat with me in the chemo barn or cried for me when you knew I was there, or who have done this for some other cancer patient--you are all champions, too.

I think I've found an organization to bear arms for us: The Damon Runyon Cancer Research Foundation assures me that scientists are marching towards the cure. I pray for their scientists, that God will attune their minds to catch the little things that lead to breakthroughs. (It was a little thing that a Damon Runyon Fellow published, in fact, that led to the breakthrough medicine God used to save my life.)

And we give them money because they will use 100% of it to put a scientist with an innovative idea into a lab where he or she will test it. A lot of their ideas won't pan out. But some have. And more will. And every breakthrough once started with a pre-clinical idea that someone paid for.

Bryan and I are thankful we get to be a part of the cure.

Grand Finale

2010-03-31T07:52:00.005-06:00

The week heading into surgery, I prayed that God would do one last Big Thing. Something that'd make for a real bang-up last post. You know. End with fireworks.

But I didn't have any visions of Heaven while in the ether. And, as I've told you, my hospital stay wasn't great. I spent the weekend in a real funk, which I thought was due to the emotional expense of the surgery. Then, after posting on Sunday with those notes and updates, and signing off that night with such resignation, then God showed me that all of what had happened in the hospital and the days that followed was my last Big Story.

I used a phrase in that Sunday post: "frustration that one of my medical requests had been ignored," and left it at this because I didn't want any of you to think Mayfield was a jerk. Seriously. He has been the ultimate agent of God's grace and mercy in our lives, I didn't want one small thing from the end of this road to cloud anyone's estimation of him. I love him and so should you!

Now I see that probably the bigger reason I didn't elaborate is because I was the total jerk. And who wants to be a jerk at the end of her own blog?

Well. Without further delay, here is the story, starting at the place where Bryan, Amy, the surgical nurse, pre-op nurse, surgeon and nurse anesthetist were all huddled in the pre-op bay.

I was talking with the surgical nurse. She had the standard list of questions to ask and then I asked one myself: Will you be inserting a catheter?

Yes. It would be a longer operation because of the two procedures, so, yes.

With great forethought, I recalled my first major surgery in July, my ankle surgery from 2 years ago and my baby deliveries following the epidurals and said, "You know, I can never urinate following anesthesia, and I really hate being awake when they put a catheter in to relieve me, so can we just leave this one in until tomorrow morning?"

And she said yes. No problem.

Fade to black.

Wake up, as I've reported, way too early. Feel them holding me up so they can wrap my chest and immediately realize just what's happened up top. Do my best to scooch myself over to the bed even though the pain is screaming from two places. Recall why my abs might be hurting and feel even worse.

And then. And then. Feel a bit of pressure in my bladder. I murmured, from my haze, "Is my catheter still in?"

The recovery nurse checked. Nope.

"They said they'd leave it in."

She checked again. Nope. She said she was surprised, too.

An intense wave of anxiety swept into me. My mind raced--still foggy, of course--as I flashed back to what it's like to be post-anesthesia with no catheter to help me. It was sheer irritation to try to urinate when you know you're full and yet you just can't. And so humiliating to have to have a nurse walk you to the toilet before you're ready to walk only to sit down and not do anything while she's standing there, waiting on you. It just sucks.

Mayfield walked in at this very moment. Now. I'm going to report this conversation to the best of my recollection. But remember that I was still foggy, and what you're about to read is a blend of what was actually said mixed with heavy amounts of what I perceived about the tone.

I'm pretty sure I started it. "You took my catheter out." It was an accusation.

He said, "Yes. . ."

"I said I wanted it in. How am I supposed to urinate?" Still accusatory.

"You're allowed to get up as soon as we get you to your room." His tone seemed flippant to me. Like: no big deal. Just pee.

"I can't just walk around right after anesthesia." The pulse monitor starting beeping a bit faster.

"You should be trying to walk around as soon as you can. You're supposed to be walking around."

"You've been pumping me full of IV fluids for how many hours? And I'm not going to have to urinate before I'm ready to walk around?"

"You can use a bedpan."

Use a bedpan? Idiot man! Stupid, insensitive, idiot man who has no idea what it's like to have a woman's equipment!

I flashed back to the ankle surgery when I didn't know I could ask for a catheter and no one offered one and, given that I had a broken ankle, I wasn't allowed to try to get the toilet myself in the middle of the night. So, all night long, once the urine actually started to flow following several painful hours, I used a bedpan.

And it was disgusting. Urine doesn't actually go into the pan. It spreads out all over such that I had not only to ring the nurse every 30 minutes to ask for it to be emptied, but I had to do a big wipe-up as well, and then try to sleep in the dampness of my own urine.

I hate bedpans. Which is why I said, "Bedpans don't work."

And then he scoffed. Or laughed. Or some other non-taking-that-comment-as-truth sort of reaction. I said, "I'd have to call the nurses to ask them to empty it." This was only a shadow of the problem. But the haze of ether, alas, the haze. . .

He said, "Amy, that's their job." And at this point, I didn't recognize his tone, my brain just couldn't track with it. But in the moment, I took it as sheer argument. This guy was arguing with me. I'd just had several girlie-parts removed and I felt like crap and I'd just thrown up in dry heaves from the anesthesia and he was arguing with me?

Poor customer service, people. And, like you, poor customer service has the power to enrage. The pulse monitor beeped yet faster.

He probably noticed this. He said, "Amy, I'm not the bad guy here. I'm trying to take care of you the best I can."

Such confusion here. He thought I was accusing him of being a bad guy? How could he think that I'd ever think he was the bad guy? Being a jerk about this catheter thing, yes. But it made me even angrier that he'd say this. It felt like condescension.

Yet, with the haze of ether. . . I was in no shape to explain it to him coherently. I just said, as my voice got louder, "This whole thing is just an extra layer of humiliation I don't need in my world right now!"

He said, "The catheter presents an extra layer of infection you might not want, either." Cheeky bastard!! "But if you want to buy into that risk, you can. . ."

And this felt like manipulation. The pulse monitor sounded like a bomb timer right before it explodes. "I just want to be able to urinate and it doesn't even matter if I can walk around yet!"

"Well I wouldn't want to have that thing hanging down between my legs while I was trying to walk around, either."

And that was it. That was the end. I shouted at him, and I mean,
I shouted, "Mayfield, you're not the f****ing patient!"

Oh yes I did.

The recovery nurse, witness to all thus far, stiffened. Who else was in recovery? Anyone awake and in that giant room heard me.

My pulse, I would learn later, was at 163, which is around my maximum target heart rate for a cardio workout. And yet it got there through sheer emotion.

I'm not sure what he said. I think he came towards me, from the foot of my bed where he'd been. And I screamed at him again to "Get out of my space!" Which is a total Mommy thing to say. . .

He left.

The nurse decided I was well enough to go upstairs to a room. I cried a lot. Listened to her hand-off instructions that described mostly the catheter issue. The recovery nurse said, "Amy and Dr. Mayfield. . .disagreed. . . They had a. . . disagreement. . ."

Bryan came in soon after. His face was full of pity. I told him I was so glad to see him, I had been so lonely and upset in recovery. He nodded.

Then I asked, "Did you see Mayfield?"

Uh, yeah. "Did he. . .quote me? Directly?"

Bryan kind of smirked. "Yeah. . ."

I got the full report. Mayfield told Bryan the main issue, and then quoted the final moments, said I could have a catheter if I was willing to take on the risk of infection from it, that this was my choice.

This still didn't make sense to me. We didn't have the whole risk-of-infection talk/concern last time. The nurse just put one in after it was clear I couldn't go on my own.

I asked Byran--can you believe I asked this? this is how mad I was at Mayfield--"And was he laughing when he told you? Did he think it was just hilarious?"

Bryan said, no, "He looked really sad, Amy."

Oh.

The afternoon passed. It included two trips to the bathroom that were both unsuccessful and that both happened in front of my roommate's freakish visitors. I just couldn't get past my frustration. The feeling that all this could have been avoided if he'd just listened to me.

The nurse did a bladder scan. Detected that I was nearly at capacity, and started a catheter. There was no discussion about "Mr. Wink" this time, I can be thankful to say. But it took two nurses, one of the most humiliating positions you can imagine, and 3 attempts. Seriously, they opened 3 different catheter kits before getting it.

What relief, though! Whew!

The early hours of the evening passed and as I felt better and better physically, I felt worse and worse in my heart. The whole day, I commented to every nurse who came in--and surely they all knew about the incident because gossip must surely travel quickly in a hospital--"He might have been wrong about this, but Dr. Mayfield really is terrific. I love the guy. This was just one small mistake. . ."

Each one nodded and smiled and said something like, "Yes, he's the greatest."

I told Mayfield this much later, that he was very popular with all the staff and he said, "That's because I don't steal food out of their break room."

He came into my room at about 7 PM, and he looked really terrible. I mean. . .just really down and sad and disheartened.

I said, "Mayfield, I'm so sorry I cussed at you. I shouldn't have yelled at you. I'm so sorry."

He came and squatted at the side of my bed so he'd be at head level and said, "I'm glad to hear you say that because that really hurt my feelings."

I cried at this. My pulse went back up to 130. He was teary-eyed, too. And he went on to say that he accepted my apology, and it was all OK, I'd had a really rough time, I had been through a lot, it was OK that I'd gotten so upset. He said that he'd had a really long day, too, following my surgery. And he looked like it.

Which is why I said, "We don't have to talk about it now, but. . .you said some things that were not very cool either."

He nodded at this and said he had plenty to learn and that he was open to getting better in any way that he could.

And that was the end of that part of the discussion. We went on to discuss my condition and medical needs. And then we three talked for a bit longer about general things.

But right here is where I have to put that asterisk. Right at that moment when I declared, basically, that I still held something against him. He didn't take it that way, and I didn't mean it that way, but as the weekend ensued, it became clear that this was happening.

All of Friday, Saturday and Sunday, my heart just ached. I attributed this to the loss. Right? I mean, of course I'd be feeling sad.

But it was more than this. When I wrote that post on Sunday, I wanted badly to be able to share a Good Word from God, to tell how the light was still shining in that dark moment. But throughout the whole history of The Big "C," I've never allowed myself to fake it. I've never put a braver or happier or more joyful face on the truth than what I was honestly experiencing.

So, Sunday as I wrapped up that post, I did what God asks His children to do: When we're not feeling the God-juice, so to speak, we don't pout and we don't doubt, we just need to bank on Scripture.

In those low moments--indeed, following a whole weekend of not being able to see God or sense His joy--we need to say, "That which is true is true, regardless of what I can perceive at this moment. And what I know is true is God's Word."

In this case, God's Word says that I might be pressed, but not crushed, might be persecuted, but not abandoned, might be struck down, but not destroyed. And God's Word says that I am blessed beyond a curse--even the curse of cancer and breastlessness and early menopause--because it's His promise that endures, not my circumstances.

And I thought that was the end of it, friends. I thought, "Well, no really great story. Only a horrible moment with my surgeon that I'd rather no one know about. . ."

Sunday night, I couldn't get to sleep. My heart was still aching. And it made no sense. Grief, yes. But grief that lasted over so many days? For this? This was the end of the cancer marathon! There should be at least as much relief and gladness as there was sadness. But I couldn't shake that sadness.

There's one thing you can do when you get to this point--when something is wrong, and you know it, but you can't put your finger on it.

"Blessed are the poor in spirit, for the kingdom of Heaven is theirs."

That doesn't sound helpful, but that's kind of because it's in code. A helpful paraphrase of it is this: "You're blessed when you're at the end of your rope. With less of you, there is more of God and His rule."

So I prayed that simple prayer. God, I'm hopeless on my own. I can't do anything right for myself apart from You. Search my heart. Show me what I'm missing.

This Scripture came to mind immediately: Blessed are the pure in heart, for they shall see God.

And that was my problem, wasn't it? That after so many months of seeing God's Hand so clearly, day after day, at the very end of the trial, I just couldn't.

If you're pure in heart, you'll see God. If you're not seeing God, you must not be pure of heart. Simple modus pollens logic.

I asked God to show me what was wrong with my heart, and like a movie, the entire scene from the day of my surgery replayed. Only this time, it didn't look as I've described it to you. God somehow let me see it out of the haze of ether.

In this new version, Mayfield is the doctor who came to check on me in recovery only to find a patient mad as a hornet, and he was completely bewildered. And flummoxed. This wasn't a situation that escalated because of his presence, it was already an impossible situation when he walked in. An ambush, really.

In this new version, I saw how I hadn't had the catheter discussion with Mayfield, I'd had it with the surgical nurse, who makes no decisions in the OR. She knew of my preference, he did not.

And in this new version, I was holding something against him. "I apologize, but. . ." and it wasn't OK to walk away from that with the conclusion that he'd messed up, but in the grand scheme it didn't matter.

If he had messed up, then that would have been fine. Granted, he shouldn't suggest that a woman use a bedpan. But other than this, I saw clearly that he hadn't been wrong.

I played a hypothetical situation out. Suppose I had told him about the catheter thing instead of the nurse. He would have said, "I see your point, but catheters present an additional risk of infection. So it might be better to go without, try to urinate on your own. And then if that doesn't work again, we can always put one back in."

I'd have accepted that. That sounds completely reasonable. And following this realization, as I lie awake not able to sleep, God showed me that the core offense is that I did not trust this doctor's motives for me. I should have. Instead of insisting on how right I was, I should have just asked, "Why?" with a belief that he'd had a good reason.

This isn't advice I'd give to many other patients. I think we're all better off being our own best advocates. But after this guy had done so much for us, had gone so far beyond the call of duty and even beyond the call of excellence. Really. That deserves a measure of trust.

I fell asleep soon after figuring all this out.

We saw Mayfield the next morning, and I shared it all with him. That I was sorry for more than just the yelling and the cussing, but for not trusting him when he'd more than earned it.

He said I didn't have to apologize, and it was all OK, that, yes, he'd only been concerned about infection. That this is the kind of thing surgeons have to answer for if something does go wrong. That having a port in made the possibility that much more risky, because the bacteria would have circulated through it and built up there into a real poison. That--and he kind of let this slip--one of his colleagues (not from this hospital) had just lost a patient to port infection resulting from a catheter infection. And that he'd been "petrified" of any infection in me.

At this point, we were both teary-eyed again and Bryan was looking at us with his little smile. He said later, "I think it's cute how you both find something to cry about at every appointment." Cry-babies, we are. Absolutely.

He also mentioned that he'd love to take a class where they teach him how to talk to patients as they come out of anesthesia. But I'm pretty sure that class doesn't exist because there's as many ways to do it as there are patients. And in my instance, there's probably not a single thing he could have said that would have penetrated the frenzy I'd worked myself into.

And all of this makes for a grand Grand Finale, why?

Because this whole cancer journey has born a lot of fruit. It's been good and big for Bryan, for our children, for our friends and family. It's been the Hand of God reaching down to Earth in ways that we can see and enjoy, and I've been glad to share openly what that all looks like.

But chiefly, it has not been about other people. It's been about me. It's been for me. This cancer and the treatment of it has been a gift meant to bless me. And at the last moment, when I was looking for one last great God moment to wrap it all up, He gave me one.

He used Scripture to show me the sin in my own heart and the cure for it and how to love someone better having learned the lesson. It was a microcosm of God's bigger project in my life. An example of what it means to have a relationship with Him, what it means to live with the Holy Spirit alive within me. And that's what this whole cancer thing has been mostly about: The God of the Universe is bigger than whatever circumstances come my way.

Thank you for being used by Him to encourage me. You have been His instruments of blessing.

There's a lingering question from The Big "C," isn't there? The question: What shall we call people like me if we don't call them "warriors"?

And the end of the marathon, as we left Mayfield's office following the post-op check-up and tube withdrawal, he said, simply, "You're a champion."

Yes. That's it, isn't it?

Penultimate

2010-03-30T12:27:00.004-06:00

Tomorrow is the last post for The Big "C." The Grand Finale. The End.

In about a month, I'll re-archive the whole thing so that a newcomer can read the first post and scroll straight down to get the whole story. This won't be the end of Amy Ponce!, blogger. I have started a new one, http://www.poncefamilysuperheroes.blogspot.com/, to chronicle our new life.

Because we're done with cancer, baby. And that whole marvelous, blessed, beautiful, exciting, love-fill, joy-beggetting story had a beginning and middle. Tomorrow, I'll tell you about its end.

Preview: At one point, I screamed at Mayfield and may or may not have dropped an f-bomb on him. You'll definitely want to tune in.

Until then, many notes to offer:

I mentioned making a whole post on the reconstruction decision. But, eh, it's not worth a whole post. The point is that there are 3 options for reconstruction of "breasts."

But you're not really reconstructing breasts. You are creating appendages of flesh that are shaped and tattooed like breasts, sure. But you can't feel anything in them. So there goes a substantial portion of their function, no?

None of the 3 options were too attractive to me once I looked into them. The "cadillac" option, the one that yields the best cosmetic results, requires taking ab muscles out from one place and rolling them up into the new construction.

Um. Riiiiight. . . I just really want as much of my body to be as God made it.

Option 2 involves cutting a "flap" of skin from one part of your body and sewing it to your chest, only to later implant saline--or whatnot--into it.

I just can't wrap my mind around this one either.

Option 3 involves inserting tissue expanders in your chest. They are kind of like spring-loaded clamps that constantly push out and your body--for 6 months--constantly makes more and more tissue to accommodate them until you are stretched out enough to hold saline implants.

I talked to a woman who was at the end of her tissue-expanding period and she said she'd been in a state of grimace the whole time. On painkillers the whole time. And yet still in pain.

My tissue had to expand just a little to accommodate my port and I tell you, for the week it took to adjust, I couldn't sleep, could hardly move. . . It was a mess.

All 3 of these options require at least 3 surgeries, the last one at least 5, and none of this is considering the risk of complications through infections which are very, very common.

It's a lot to go through and right now, I feel really done going through stuff.

Bryan is part of the equation, of course. If this were something he could snap his fingers to make happen, he'd do it. We both would. But the reality is an idea he hates. He'd be supportive if I wanted to, but beyond this, he has said, "Don't do it for my sake. . ."

I think he's pretty much done going through stuff, too.

***

Physically, I'm feeling really great. I'm not taking any drugs for the pain. I have started taking Arimidex, and I will continue--daily--for 5 years. Good thing I bought that weekly pill box. . .

This is the medicine I can take instead of Tomaxifin because I am now officially menopausal and will stay this way. Studies show that Arimidex is a great deal more effective again recurrence than the other. I'm not sure how they can argue this, though. Probably the difference is not the drug, but the fact that women taking Tomaxifin probably still have estrogen coursing through their bodies whereas those of us on Arimidex do not.

Whatever the case, I'm glad to be among those who have a lower rate of recurrence.

***

The kids are doing so well. We picked them up yesterday afternoon and heard all about their fun adventures with the Burches.

I'll tell you something: They have always been precious to me. But this time when I saw them again, knowing that there will not be more babies, I wanted to press the slow-motion button on their lives. And they seemed about 7 times more precious than ever before.

How ridiculous not to have felt all of that before. But there's the truth, and this is one more thing to be thankful for--a renewed perspective of my children.

***

Related to this, Gemma, Josh and Bryan left for Florida for 10 days this morning.

New perspective notwithstanding: wooo hoooo.

***

I plan to use this time to work on and finish up my book about our time in Korea. So if I come to mind and you are wondering how to pray for the woman who has everything, pray that I would be diligent and productive and skilled in my work.

***

I had the drainage tube taken out yesterday at the post-op appointment. It hurt just a smidgeon because this one didn't have to wind all the way up to my armpit. That hole plus the various incisions on my body look great, I'm healing well.

Bryan and I then went to lunch and then to my appointment with Dr. Markus before a dose of herceptin. It was good to see Dr. Science, as always. I brought him a can of kosher macaroons for Passover, which he found very thoughtful.

I told him I had wanted to make him a kosher cake--I have a really great recipe--but then realized that I don't have a kosher kitchen nor a kosher plate to bring it to him.

He poo-pooed all that, said he doesn't keep kosher at anytime, and that his wife wanted to eat a French baguette at their seder but he thought "that might be pushing it."

All of this, he says, made him feel "even more guilty" that he'd completely forgotten about Passover until just the day before.

I've been to a seder before and I loved it. What a beautiful way to eat a meal and celebrate a year of the Lord's work in your life. And we didn't even have canned macaroons at that one!

Who knows? Maybe next year the Ponce!'s will host a seder. . .

***

I'll see you here tomorrow for the final installment. I've got to say: The ending tastes pretty sweet and not bitter at all.

From the Horse Herself

2010-03-28T11:58:00.003-06:00

Thank you, Sister #1, for providing updates. Here are a few details to fill in:

My "showtime" was 6:30 AM, and we walked in at about 6:15 to find 4 other patients already there, with no one yet at the desk.

At 6:35, a nurse came out to this waiting room and called my name. As I walked towards her, one of the other patients there said, "Why does she get to go first?"

***

I asked Mayfield about the early start time as it co-ordinated to his rock star morphology. He said by the time it was actually "his turn" to operate, it'd be 9:30. That is, we'd do the oopherectomy first, and it would be in the hands of Dr. Stickley, the OBGYN, as he supervised.

Dr. Stickley. Very nice, very professional. Very young. She can't be a day over 26. I'm glad Mayfield was there.

And "oopherectomy"? Surely I'm making that up, right?

No. That's what the ovary-removal is called. Because the tubes were snipped off, too, it is called a "Salinga oopherectomy." But the best part is the pronunciation of this word:

ooh-ooh-fer-ect-o-my

Yes. Both "o's"--given a long "o" pronunciation.

Said together, "salinga ooh-ooh-pherectomy" sounds like a drink that comes with a little umbrella.

Yet this is how Dr. Stickley and most of the nurses pronounced it.

Ridiculous. We don't say "Look at the animals in the zooh-ooh," do we?

***

The wake-up out of surgery this time was really, really rotten. I think the nurse anesthetist, Chuck, while a very nice man, woke me up too soon.

I was awake for when they wrapped me up. This not only hurt. It was also horrifying.

I was awake when they switched me back to a bed. This both hurt, and it was annoying as they asked me to do the moving. (e.g. "Shift your weight from hips to shoulders as you move across.") Folks! My ab muscles now have incisions in them!

By the time I got the recovery room, my stomach was on fire, my chest wound was on fire, and I was coughing and throwing up (with dry heaves, as I was empty) which made everything hurt that much more.

And, whereas for the first surgery, I had awoken to very good news--that I hadn't lost my muscle, that the cancerous lymph node was gone, too--and to Bryan in the recovery room with me, this time I woke up and was immediately conscious of the sheer sadness of the loss. Bryan wasn't permitted in this time, and I was so lonely, in so much pain, was so frustrated because one of my medical requests had been ignored.

It just all sucked. That whole day was crappy. Possibly the nadir of this entire cancer experience.

So, while on one hand "all went well," and we can be glad about that, on the other hand, what had to happen is not a great thing. The farther I can get from that day, the gladder I will be.

***

I was put upstairs this time, not in the ICU. This meant that I shared a room. I don't know what her condition was, but she complained a lot, all through the night about how nauseous she was. And she kept calling her kids on her cell phone and cussing them out. Something about their having taken her car out when she told them they couldn't. Her husband was in Iraq, and was not equipped with "side plates," which made her cuss a lot more because this endangered him.

All of which I learned by listening to her. But it's not eavesdropping when the other person's head is about 5 feet from yours with only a curtain separating you.

Her kids visited both days. A bunch of teenage boys, one of whom had a mohawk spiked about two feet high. These are people I had to parade past on my way to use the bathroom.

Hmm. Yeah. Well. If I were a more compassionate person, I might have done something--anything--to offer some comfort to her. But I really just wanted to check out as soon as possible.

***

Speaking of Iraq. This time, as I awaited surgery in the pre-op bay, the guy next to me was loud as he briefed his nurse. Bryan and I learned that he was 24 years old, and was having an operation on his shoulder because he'd thrown it out while steering his vehicle wildly to get out of a kill zone while on tour.

Just a little reminder not to refer to me as any kind of warrior.

***

I remembered to bring my own pillow this time. My own super-wonderful Tempurpedic servical-support foam pillow. And I used my bright pink survivor-ribbon pillow case my friend, Kathy, made for me, just to be festive. This made a huge difference. I was very comfortable.

***

What was uncomfortable for several days was the carbon dioxide left in my abdominal cavity from the laperoscopy. They infulated (Mayfield swears this is a word) me so they'd have room to look around and go to work. Then they let the gas out. But it doesn't all leave right away.

Instead, it escaped into my shoulders and made stabbing pains in my muscles. No drugs can help this. It's just a lot of owie owie owie until it finally goes away. Which, for me, was this morning.

***

Speaking of drugs, I'm already off the big ones. I take extra-strength tylenol and antibiotics to ward against any infection, as an infection would be particularly serious for my port to process. As of this morning, I was feeling pretty comfortable all the way around.

***

Met about a dozen nurses this time. It's a busy floor. They were busy men and women. All of them nice. None of them with time to chat with me. No fun stories there.

***

The tube is still in. This is the one Sister #1 mentioned. She should probably stop reading now, because she's easy-queasy. . . This is a drainage tube, left in while the skin is sewn around it. Bryan tends to it every morning and evening for me, and we are on track to have it taken out tomorrow morning at my follow-up.

Other than this tube, I've got ACE bandages wrapped around me a tightly as I can tolerate them. I can tolerate considerably more this time, as I'm no longer also wrapping a breast. Now it's just chest wall, the nerves to which have been cut. So. Wrap away.

***

Betsy tells me the kids are doing well, having lots of fun with the recent snowfall. The other night, Gemma scooched down into her sleeping bag so no one would hear her and started crying and crying because she missed me.

That's one of the saddest images of the past year.

She sounded very happy when I talked with her. Youth bounces back.

***

My right arm did swell up again from the fluid intake. It is also reducing again. I can only hope I can get it reversed in short order, and not over the course of a few months.

***

And here I sit: upright for longer periods of time, awake for most of the day, appetite restoring to normal. I'd be lying if I said I was in a very good place emotionally. Mostly, this is just a very sad time and I don't feel great. I feel absolutely laid low.

But. To paraphrase: I'm afflicted, not crushed; persecuted, not abandoned; struck down but not destroyed; I'm blessed beyond a curse for His promise endures.

And one of His promises is that things won't always be like this.

She's Home..

2010-03-26T18:30:00.004-06:00

And trying to get some rest.

She's walking a little slow and the only comfortable position right now is flat on her back so there won't be much communication from Amy on the blog or via email until next week.

The follow up is scheduled for Monday, hopefully the tube will be removed (I have no idea what the tube is for and forgot to ask) and she will be a little more mobile.

Bryan is taking Gemma and Josh down to Florida for a week on Tuesday so Amy can get some serious quiet / recovery time.

It's been a tough 9 months. But the scary part is over - let's celebrate the cancer free years to come!

Just heard from Amy

2010-03-26T10:52:00.004-06:00

She's on track for heading home this afternoon - easier to get some rest in a quiet house than a noisy hospital. She did, however, decide to stick around for lunch since hospital food is so tasty...

Amy sounded good although disappointed at the return of her lymphodema - hopefully this is due to having fluids pumped into her during surgery and she'll be able to process it out like before.

I'm guessing that there will be a lot of napping over the next couple days and I don't know when she'll feel like getting back to the blog but feel free to continue leaving comments - she'll enjoy reading them when she gets here and I know that she really appreciates all the support and love coming her way!

Sister #1

Update

2010-03-25T08:47:00.006-06:00

As noted in Amy's post below, Sister #1 here to relay the update from Bryan.

All is well! The surgeries were completed with no troubles and Amy will be up in her room resting within the hour.

Things got started on time and they finished up in about 4 hours - no complications or unexpected blips so Amy should be home on Friday afternoon.

btw, Dr. Mayfield is a rockstar.

Game Day!

2010-03-24T21:40:00.002-06:00

As I write, it's about 9:40 at night. I have to get up tomorrow at 5:00 AM. The "show" time is 6:30 and the surgery is at 7:30.

I'll have to ask Mayfield about this when I see him tomorrow. I distinctly remember his saying that he turns into a "rock star" by 9:30 AM. . .

Judging from some e-mails, there's some unclarity regarding tomorrow's procedure. This is my fault. I'd alluded before to the idea of doing a reconstruction in the same surgery as the removal. We looked into this. And it's definitely not what's going to happen tomorrow.

In fact, right now, we have no intention to pursue reconstruction. That's a post all in itself, though. Maybe one I'll get around during my recovery.

Speaking of which, I'm told I'll likely be allowed home by Friday afternoon. The kids are with Miss Betsy and her family all weekend, so it should be a very peaceful few days.

Bryan will call Sister #1 with an update after he hears from Mayfield post-surgery, and Sister #1 will post said update on this blog when she gets it. This should be up by early afternoon. If it's not, start praying with wild enthusiasm.

Before my first surgery, I remember having to take an ambien just to fall asleep, and it only worked for a few hours. I really feel like I can go drug-free tonight, so it must be better this time around, no?

Well.

Those alive in the Spirit set their minds on things of the Spirit. All flesh will pass away one day anyway. . .

Thank you for your prayers.

That Guy Again

2010-03-22T19:42:00.002-06:00

On today's pre-op appointment with Mayfield:

How long are these things, usually? 20 minutes? 30 minutes? We were there for an hour and a half with Mayfield, chatting about all manner of things. Many of them medical, of course. But some of them completely irrelevant to the coming surgery.

Like his dogs. Turns out he has always been an akita man. I told him my akita story, you know, the one where my brother's dog tried to kill me.

I asked him one pressing question, and he says he'll have an answer for me soon: How often does a person come to Evans Community Hospital for one reason, then twist or break her ankle on the piles of rocks dividing out the parking lot sections because no one is actually going to walk all the way down an aisle instead of cutting across the lot to get directly to the door, and need, say, ankle surgery?

I'll be certain to tell you all whatever Mayfield learns from his colleagues about this.

Speaking of follow-up, do you remember Yolanda? She was the quasi-willing participant as proxy in the Name Game. She left a note on Mayfield's desk that read, "I have to leave at 11 today, but please tell Amy Ponce I say 'Hello.'"

The whole dang bunch of them are just so super! I took the note and plan to put it in my scrapbook.

We're counting down to the Big Day on Thursday. There is a lot of sadness in this. Tears come out of the blue, often at inopportune times. The pressure this time is almost as great as it was for the first surgery.

But knowing that God has chosen Mayfield to do the job for us is an immeasurable comfort. We're going to march forward, and get through this, and one day count it as pure joy.

Lymphe-loser

2010-03-22T12:06:00.002-06:00

I went in for a lymphedema follow-up appointment this morning. This afternoon, we'll go for our pre-op consult with Mayfield at Ft. Carson. During the interim, we've been running errands like crazy and, look! I have just enough time before leaving to give you some very good news:

The lymphedema has reversed! Wooo hoooo hooooo hoooo hoooooooooooooooooooooo!

Praise God. And thank you for all your prayers. This is a very tender mercy, and it's a very sweet icing on top of a very fancy cake.

How do we know it has reversed? Let me back up a bit.

At my first appointment with Lil, a lymphedema specialist, she measured both arms. To do this, she made marks on my arm every 4 centimeters starting at my main hand knuckle and going all the way up to my shoulder.

Then, at each mark, she used her tape measure to take the circumference of my arm at that mark. She then uses these measurements to calculate the "volume" of my arm in mL.

Lil measured my left arm, the unaffected one, to use a baseline. My right arm started off about 300 mL bigger. That sounds like a lot, but spread over the whole appendage, it was barely detectable.

But I detected it. And treating it right away was pretty key to our success.

As for the treatment, I've described before the manual drainage and compression sleeves. At night, I slept in a special, super-puffy foam sleeve with a waffled texture that left my arm looking like a buffet item each morning.

Each time I've gone back to Lil, my arm was smaller and smaller until today, when it measured the same size as the left. And this is with my having not worn compression sleeves for most of the past week. (I'd been feeling a very sore nerve or tendon or something and began to think that perhaps I was squeezing it too much, so I stopped. . .)

So, hoorah! I now need to wear a sleeve a) when I work out and b) when I fly (on an airplane, when flying to tend to my business as a superhero, it's not necessary).

I am also still taping my first two fingers, which have a teensy bit of swelling left in them.

God Bless Lil and the wonderful work she does! I can tell from my internet reading that a lot of women don't have a resource like her--so knowledgeable, kind and helpful. I'm exceedingly thankful for her.

AND, as she made the marks on my arm today, she commented, "We'll start down here at this little Barbie Doll wrist." Extra credit goes to the person who is FIRST EVER to compare one of my body parts to a Barbie Doll's.

Belated Pink Link!

2010-03-19T10:42:00.004-06:00

It's been an uncomfortable week. I haven't sat down to the computer in days because it's extremely painful to sit down. This is because I'm experiencing a stress-related side effect, the details of which I need not share. I'll say only that Preparation-H has been no help.

I missed a Thursday Pink Link. So, Friday's Thursday Pink Link is the following:

We have a tie.

Parin sent me this one.

It epitomizes something. . . Hard to pinpoint what, exactly, irks me about it.

Let's start with this: Wouldn't a ped egg normally be pink? It's a tool mostly used by women. It is stored in the bathroom. It's for maintaining physical beauty. Why wouldn't it be pink?

But, slap a little ribbon on it, and suddenly the pink product becomes a Breast Cancer Awareness product.

I'm annoyed that the color pink has in this way been so totally co-opted. Poor, poor pink. You can't be merely pink anymore.

Sister #1 sent me this one along with the comment, "I'm not sure if all the teams have followed up with this option, but the Chicago Bears seem to have gotten into the jewelry business."

"Business," indeed. Which is why this link earns the award for "Most Obvious and Shameful Attempt to Capitalize on Pink Think."

Note that it's only "a portion" of the proceeds from the profit of bracelet sales will go to "fight against breast cancer." What portion? 5%? 10%? That's making Dick Sporting Goods more money than if they paid for ad space to sell it at a mere 20% off.

And, on a more pragmatic level, Who wants a Chicago Bears-Breast Cancer bracelet? The only person buying this piece of jewelry is the idiot Bears fan who thinks his wife--just because she watches the games with him--would rather have NFL gear on her wrist than, say, diamonds.

Of course, for $17.95, he can't buy her diamonds. So maybe Pink is the cheaper, and therefore better, option. . .

B, G and J Day: High and Tight

2010-03-15T05:00:00.000-06:00

B:

I mentioned Bryan's retirement last week. A few of you asked what he'll do after 31 May.

It looks very likely now that he will continue to do the very same work, for the same command, only in civilian attire. He is hoping to move into a GS position when it comes online in a few months, and is right now in negotiations with a defense contracting firm to become a contractor for this command until the GS slot becomes available.

Bryan is very pleased with all of this. He really likes his work and really likes the people he works with and for, so he's happy to stay. We're extremely grateful that it looks like he'll have a smooth transition into the civilian workforce. It's been a wonderful provision from God. And it's nice not to have even more big decisions to make. . .

G:

She was sick all of last week. She had a fever and congestion that moved into her ears, so I actually took her to the doctor. Mostly, she just wanted to lie on the couch, watching PBS kid shows. But partly, she wanted to lie there with me next to her.

I did this often--parked myself on the couch. I was usually reading something as we sat together, but now and then, I'd pay attention to what she was watching. At one point, I tuned in to see a dinosaur character talking to the Wiggles, who are 4 grown men living juvenile lives and singing a few songs about it.

I asked Gemma, "Is that a real dinosaur?" Meaning, of course, "Is that dinosaur a character in the show the way Barney is a character? Or is the character really a person who, for this episode, is wearing a dinosaur costume?"

It is not her fault for not getting my meaning.

She answered, with brow furrowed, "In the show, it's supposed to be a real dinosaur, but I think when we see dinosaurs like that in movies, it's really a person in a costume. I think. I'm not sure. . ."

J:

My hair continues to grow. It has gotten to a length that is as short as short can be while still oddly having a feminine look to it. I really should just show you a photo. . .

But until then, you'll have to trust me. It's still pretty short.

We got Joshua's hair cut this weekend. A high and tight. Adorable. His whole face seems 15 degrees brighter now.

When Bryan dropped him off today at his AWANA room, the teacher said, "You got a hair cut just like Daddy's!"

And Joshua said, "No, like Mommy's."

So. Maybe you don't need a photo to picture it after all. . .

A Strange Embrace

2010-03-12T05:00:00.000-07:00

Here's a story for you:

On Sunday, I was checking Joshua out of his classroom at church when Susan tapped me on the shoulder to say hi.

Susan is not really a friend. We don't know each other well at all. The last time I was in the same room with her was a day in September 2008. But I've always liked her, and she's an amazing woman with an amazing story. God is BIG in her life. . .

So I turned to greet her and suddenly found myself hugging her. She hugged me back--it was a really intense embrace, and I started crying. Not out of sadness or grief I just. . .I had no idea why I was hugging this person and why we were both now crying. But there came an overwhelming sense of joy that we cried even more.

It was crazy.

And you all know me! I don't mind a hug, but I'm not A#1 hugger either.

Totally weird.

Eventually, we broke it off and she said I looked great. That she'd been hearing from Christine, a friend we have in common, updates about me.

"You talked with Christine, right?" she asked.

Well, yes, I see Christine every Thursday morning at our Bible study.

We had to hustle along at that moment, and so said good-bye.

A few hours later, I was talking to the very Christine in question and I mentioned how I'd seen Susan for the first time in what seemed like forever.

"Oh!" Christine said, "Did she tell you?"

Tell me what?

"That she was just diagnosed with breast cancer."

Long silence.

Christine went on, "It's at stage 1, and she told me that this is going to be a blessing her life. And I told her, 'You know who else believes that? Amy Ponce!'"

Shortly after their conversation, Susan saw me picking up Joshua from his room at church. So, she knew about her cancer and about my cancer. But I'd had no idea about hers.

But our spirits knew. Amazing. . .

Thursday's Pink Links!

2010-03-11T05:00:00.000-07:00

Our winner this week is Amy B, honorary Big Sister to my children, daughter of the oft-mentioned Miss Betsy.

A few others sent me to the pink ribbon shop. But Amy did the leg work of nominating a few products in particular.

There are these. A very good example of attaching pink to something completely unrelated. Do we need more breast cancer awareness "on the golf course." I say: Save these for a more relevant disease. Like testicular cancer.

There is this. An idea I like, actually. Your best friend should be this supportive.

And, finally, these. In case your best friend really is this supportive. I asked Bryan if he would wear them. He said "sure." I'm tempted to call his bluff. . .

The Coming Surgery

2010-03-10T05:00:00.000-07:00

I've mentioned that the other breast removal surgery is scheduled for 25 March.

There we were, steaming steadily towards this date with complete peace. Anticipation, almost, as it will be the last Really Big Thing we have to do in this marathon.

Then Dr. Science called at 5:15 PM on last Wednesday evening. He was on his cell phone, we had a terrible connection, and he was saying something about talking with a colleague (?) and then talking with Mayfield (why?) and then, at last: "Something you should consider is having your ovaries removed during your upcoming operation."

The rest of the call was a blur, except that he apologized profusely for having this conversation on the phone and not in person.

Well, why wasn't it in person? I had just seen him 2 weeks earlier, and he went through the whole song and dance about tomaxifin, the drug I'll take for 5 years that will block the estrogen from getting to any remaining cancer cells.

Except that it's "not as effective" as this other drug, which is given only to women who are definitely menopausal. And what is menopause? Medically speaking, he explained, it's terrifically difficult to identify. Even if the cycle has stopped, there may well still be estrogen in the body.

But at no time during this talk did he mention the recommendation to have my oviaries out alltogether.

At one point, I asked, "What is life like without estrogen?"

He said, "You've been living it since September" (e.g. when the chemotherapy threw me into "menopause.")

I said, "I gotta say, I was really looking forward to having estrogen back again."

He slipped into a special doctor tone called, "Help the patient see the big picture," as he said, "Look, I know this sucks. But as an oncologist I will never be able to tell you that there are no cancer cells in your body. There might be just one cell that is hiding, and 10 years from now, it will have grown to be detectable, and it would grow back in a place where you don't want cancer cells to grow. Given the size of your tumor and your young age, your risk for this is very high.

Estrogen coursing through your body is about the most dangerous thing you can have in your body at this point because your cancer is estrogen receptive. It will eat that estrogen and breed."

Sigh.

I told him, obviously, that Bryan and I would talk about it. Pray about it.

Bryan came home towards the end of the conversation and could kind of tell what the content was. When I told him, he cried and cried. We both did.

For him, it was mostly a child thing. We had hoped for a third. But number 3 didn't come along before the diagnosis. And we'd both been making the calculations of treatment schedules and time tables, and he especially carried a small hope that there'd be a window of time just big enough at the end of it all.

For me, it's a little bit of this. But more a grief over more loss. To be such a different person physically than I was a year ago at this time is still shocking. My figure is different, obviously. My hair is coming in gray. And now the chemical of a young woman will be gone from me.

We talked a lot about the recommendation. A clear and logical choice emerged. It's common sense, really. Just one little cell. Just one. It would be enough to kill me before the children we do have leave home.

And we haven't gone through all this treatment and surgery thus far only to stop short of completing a necessary step.

But.

But, but, but. . . This is a pretty big thing to choose. We're smart people, but we're not smart enough to know what is right for my body, my future health, our future family. We just don't have the knowledge we'd need to know for certain.

So we prayed that God would confirm the decision for us. Sometimes, all God gives is our common sense and faculty of reason. If this was all we'd have for this choice, then. . .OK. But we prayed on Wednesday and Thursday that He would let us see His hand on this plan. Or, at the least, that He'd work to stop us if my ovaries are to stay in.

On Friday, I talked to Dr. Markus again. This time it was a clear connection, and I had my questions lined up.

Q: Why had he not mentioned this earlier?

A: Because this is normally a conversation he has with a patient after 5 years of tomaxifin. It's standard protocol.

Q: So why now?

A: Well. . . The director of some big shot national cancer research and oncology project just "happened" to be in town on Tuesday night to give a paper.

Markus went to it, know the guy, and the two met afterwards as old colleagues.

Markus "happened" to mention my case: young woman, huge tumor, estrogen receptive cancer, and this big shot guy said that it is his standard recommendation now to advise that the ovaries come out, especially if there are no plans to have more children. The benefits of not providing the cancer cells a food source far outweigh the downside of not having estrogen.

Then on Wednesday, Mayfield "happened" to call to discuss a few patients they have in common. And Mayfield "happened" to ask if I was having ovaries out as well.

It's peculiar that he had asked this. I talked to Mayfield myself to make the surgery appointment, and he said nothing of it. But since scheduling it, he had been thinking, "Maybe she should think about this. . ." and he wanted to know if Markus had discussed it with me.

Following that conversation, Markus felt really compelled to call me right away about it. Because, after all he "had just had this conversation with the guy at the forefront of this research." Hence the phone call on Wednesday evening as he drove home.

All of this we take to be God's confirmation. No such thing as coincidence, especially not with this kind of timing, following the timing of our prayer.

It's made a huge difference to know that we're not just going with common sense. If it's OK with God that we won't have more children, that's a lot easier to bear than the feeling that cancer has robbed us of something.

Neither of us is crying anymore. Truly. It's all good.

Speaking of which: I "happened" to be studying the following Scripture during the week that this happened. Romans 8:28-39. I won't quote the whole thing here.

But the key part of it in relation to this development is this:

"Whom He foreknew, these He pre-destined to be conformed to the image of His Son"

This has been the greatest comfort of all. It's not my destiny--my purpose--to hold onto my youth for as long as I possibly can. I've been pre-destined to become more like Christ. And if my ovaries have to come out, then God's promise is that He will "use (this) for the good to those who love God, to those called according to His purpose" (8:28).

As for the details:

Mayfield called today to confirm that he found a Gyn to do the procedure with laperoscopy while I'm already under. The surgery stays the same day.

"And I'm going to be there for the whole thing to make sure he does it right." Uh. . . OK. "I'm serious, Amy. I am extremely protective when it comes to you and I will be watching every last thing to see that it goes smoothly."

Another great comfort.

We remain as blessed as ever. And more joyful--honestly, seriously: more joyful--than ever before.

B, G and J Day: Sweet Times

2010-03-09T05:00:00.001-07:00

B:

Now has less than 2 weeks of work before beginning "Permissive TDY." These are days off the military affords as retirement approaches, ostensibly to all you to get your affairs in order. Bryan plans to use his to take the kids to Florida a few days after my surgery.

He'll come back from that, work a few more weeks, and then begin "Terminal Leave." These are the vacation days he has accrued on the books beyond the number he is allowed to sell back to the military.

How does he liked the idea of retiring? He murmers every now and then, "I can't believe I'm about to start Permissive TDY. . ."

G and J:

The two go together this time. I told them they could have 10 Jelly Belly's after breakfast. This makes for good counting practice.

But soon, the counting turned into giggles. Gemma came to me with her shirt raised, shouting, "I have a Jelly Button!"--she'd lodged one in her belly button.

Josh got into the action for a little bit, but then decided he'd rather eat his. So, as we've seen other times, his candy was gone first.

Gemma carried the bag back to the counter and somehow dropped it, scattering Jelly Bellys all over our tile floor.

She gasped, "Oh no!!!"

and Josh gasped, "Yummmmm!!!!"

And I gasped, "QUIIIICK!! PICK 'EM UP!!!"

and the 3 of us dove to the floor at once, the girls frantically trying to scoop them away from Joshua, who was grabbing them and shoving them into his mouth in one fluid motion.

I was laughing too hard. Gemma screamed every time he got another one. He was flopping his body onto my arms to pin me and launch himself closer to the candy that I was going for.

The affair ended with a good many back in the bag, and a good many inside his cheeks. And a Gemma, standing hands on hips and shaking her head.

The Olympics: Closing Remarks

2010-03-08T20:12:00.003-07:00

They are random and short, much like the Olympics themselves.

(Oh, I'm sorry. Do you differ with me on this? Would you like to argue that it's not random to include curling 'athletes' in the same games as distant speed skaters? Or that rifle shooting should be coupled with, say, cross country skiing?)

1. That little Swiss boy who jumps off of mountains, flies a lot farther than anyone else, and then lands properly is too cute. I loved to see him celebrate. He leaped onto that gold medal platform with a holler! And then he told the reporter he intended to "Celebrate long."

I'd have liked to have been in the Olympic Village for that party. He looked like he was out to have fun.

2. Speaking of gold, I remember thinking as a child that if you didn't win gold, you lost. Now I really appreciate what it means for an athlete to medal.

3. Also about gold, I tuned into Yuna Kim's medal ceremony just so I could hear the Korean anthem. At the movie theater on base, they played the Korean anthem (and then the American anthem) before every show. I wondered what memories it would bring back to hear it. Answer: Not too many.

4. But I do recall that Koreans write their family names first. Hence the phrase "Kim Yuna." That's fine. What annoyed was the announcers referring to her as "Kim Yuna" every time, as though they were unsure which name was which.

Hmm. Kim Yuna in figure skating. Park Sung He in short track. And in other sports. . .we see. . .a few other Kims and Parks. . . hmmm. . . how unusual that Olympic athletes from Korea tend to have parents who name their children "Kim" and "Park". . .

5. Shawn White, snowboard king.

I have to come down on this sport as well. Seems to be there just for TV ratings. Notable about this fellow is that, while all others were wearing ski suits, he wore jeans and a flannel shirt.

Rock on, buddy.

6. Ariel ski jumping. What? How do you even practice for this sport?

7. Finally, a moment that reflects on me quite poorly:

We had a lovely Spring day last week, and I sat outside with Mrs. Colorado and the mother of my other neighbor (who had the surgery, which went well--thank you for your prayers). We chatted about the Olympics.

I remarked, "There was a shot of Peggy Flemming. She has not aged well." It was shocking, really. She looked terribly gaunt and hallow.

The Mom said, "Yes. Well. She's been sick."

This made me feel bad. "Oh, shame on me. Sick with what? Do you know?"

"Uh. . . yep. It's cancer."

"Oh, my." Long pause. I knew what was coming. But I asked anyway. "What kind?"

"Breast cancer."

Right. Of course.

A Gold Medal performance in gymnastics, ladies and gentlemen. The kind where the athlete chews on her own foot.

Not Even as Worthy as Hula-Hooping

2010-03-05T05:00:00.000-07:00

When the Russian guy landed his quad in figure skating, but got only silver, he complained to his country's press that if the champion of a sport doesn't do a quad--e.g. doesn't advance the sport with a greater physical feat than ever before--then "we're just dancing."

And, uh, "dancing" isn't, you know, a real Olympic sport.

Cheers to you, Plushenko. You've put into a nutshell just why figure skating is a competitive sport, even though it's not a race and cannot be objectively measured, try though they may.

Figure skating is an athletic performance than can be demonstrably improved upon, so it can be a competitive sport. These aren't the only conditions that a sport must meet to be worthy of Olympics, but they are necessary.

So what's with ice dancing? Yes, it's an athletic performance. But notice how the announcers didn't say anything like, "This couple will attempt a triple-flip-throw-toe-loop-axle-angle for the first time in world competition history."

What would "advancement" in this sport look like?

Let's be honest: it's in the Olympics only because it's good for TV ratings. And I was among the masses to watch it. (But I blame Gemma's enthusiasm for this.)

So, about what I saw.

1. How cute that the Americans were neighborhood buddies who've skated together all their lives. Why didn't Jeff Doll and I ever pursue ice dancing together?

2. Three events? Are you kidding me?

3. The Russians and their "aboriginal" number. Oh, my. . . The event was to interpret a piece of ethnic music, and this couple chose a. . . "native" sounding song. They dressed in tan body stockings marked with white "native" paint, and covered their private parts with green leaves.

Then they skated with moves that, if translated into words, would read, roughly, "Ooga Booga!"

I was uncomfortable watching it. This is the generation I am part of in America. On a deep, deep level, I sense the insult and the mockery. Doesn't matter that I'm not "aboriginal." Doesn't matter that their intent was to entertain. My base reaction was singular. I was horrified.

The announcers on one hand steered way clear of saying what I've just said. But they're American. They have this cultural standard woven into them just as I do. What did they say? They struggled to say anything, and came up with, "This dance just wasn't that technically challenging."

Back in Russia, the public was like, "What? What's the problem?" And the skaters themselves were like, "So. . .what if we took a little of the body paint off? Would that help? Because we don't really see the problem here, but if there's something we can do to make you Westerners and Western judges a little less horrified, we'll do it. . ."

All of which is to say: Interesting that Russia doesn't have a line in their culture that they're not to cross, as we do here.

A friend remarked that this may because they don't have aboriginal people.

To which I remarked, "Well, not after the 20th century, anyway."

And maybe part of the puzzle here is that after a people has lived through the horrors that civilization has wrought (upon itself), a little jungle dance really is entertaining and those like me who are "horrified," should take a second look at their history.

As for the dance itself, and what I thought of it. Well. It was dancing on ice. And that shouldn't be an Olympic sport.

Thursday Pink!

2010-03-04T05:00:00.001-07:00

I still don't have a good title for this feature. And you all have been of no help to me in this.

But as for submissions. . .

Adriann sent an emblem from Facebook, a ribbon on top of a heart. So, pink has gotten to Facebook, too. No surprise of course. But this saves me the trouble of actually joining Facebook to find out for myself.

Today's winner, however, is Amanda, who sent links united by a theme. Congratulations to Amanda and Brad, by the way, on their beautiful new boy, William. Will he be called Billy Bridges? Love it. This is an Air Force family that also moved across the country from NJ to Washington, and managed to send out birth announcements.

And find a pink link for me. . . OH! That's IT! "THURSDAY'S PINK LINK!"--Love it!

The point being that this is a woman with her hands full who still came up with some good ones. Great effort, Amanda. Much, much appreciated.

And now, for the day's Pink Link:

What is the point of this or this or this?

Do you use them and say, "I am aware that she is bald, but I look pretty damn terrific!"?

Figure Skating: How Do They Figure?

2010-03-03T05:00:00.000-07:00

I miss the old days.

Days when figure skaters got a row of scores, nothing higher than a 6. Why 6? This didn't correlate to anything in my life. A 5, yes, because that made it an A through F. But 6?

It was mysterious. And yet easy to understand. 5.9 meant the guy rocked. 5.3 meant he fell once. 5.7 meant it was good enough, but not great. This, anyway, is what the announcers helped us to understand.

I miss how each score had the judge's country above it. I miss how the crowd would boo when the Russian judge gave the American a 5.6 when all the others gave a 5.9. At the time, I was booing, too. Now, I know more, and I'd have thought, "Hey! That woman will be thrown into the gulag if she gives any higher!"

But there's no opportunity for this anymore, because there's no way of knowing how the judges arrive at that massive number. What does it go up to? Like, 220?? And NBC puts up a helpful little rubric that explains that anything over 170 is "superb."

I don't care what the numbers mean, NBC. I want to know which country's judge is screwing which country's athletes!

And what's this "personal best" or "season's record high score" nonsense? Are we supposed to forget that this is a subjective sport? All the instant replay in the world cannot make figure skating into a science.

I miss the days when the figure skating world gave the rest of the Olympic Village the finger, saying, "We may just barely be a sport, but we're the ones who get the air time, and then the sponsorships, and then the role of whichever hero Disney is casting in its latest ice show."

Instead, they've left this territory to the ice dancers, upon whom I shall comment on Friday.

The Olympics: Short Remarks on Short Track

2010-03-02T05:00:00.000-07:00

1. To watch it: pure exhilaration. Where has this sport been hiding? The last time I was jumping up and down, shouting at a television, the Bulls were in a championship game.

2. I'm not the only one who's made a recent discovery of it. How else can we explain the Chinese? The first time a Chinese athlete ever won gold in a winter event of any kind was when a female short track skater took it in Salt Lake City. Only 8 years ago!

This year, Chinese women won gold in all four events. Bam! (Of course, they only got it in the relay because the officials biffed a call that disqualified the South Koreans.)

My question: This is a sport designed for little people. Chinese are little. And they've had the example of South Korea, which has been a powerhouse forever. What took you guys so long to go short?

2B. And why do Chinese men suck at short track?

3. As I say: it's a thrill to watch. So why were there so many empty seats in that stadium?

4. Let's talk uniforms. The US skate team wore, um, let's see here. . .light blue tunics with dark blue legs and arms.

Light blue? What the heck?

5. As for our boy, Apollo Anton Ohno. I'm glad to see a competitor like him do so well. He seems humble enough. Grateful enough. When he gets near a microphone, the overwhelming and solitary impression he makes is that he loves his sport.

His Dad is a cutie.

And watching Ohno skate is like it was to watch Jordan. You know he's going to pull off a winning move under pressure, and you know it's going to be beautiful.

6. But every time Ohno's face showed up on camera--and it was a lot--I would think, "He reminds me of someone. . ." and I'd suffer that nagging feeling of not knowing who. A former student? Someone I went to school with? Who?

The last night, aha!, I put my finger on it: Apollo Ohno bears a striking resemblance to my nephew, Joe. Seriously. If the former didn't have that soul patch going on his chin, the two could be cousins.

Which is odd, given that my nephew has no Asian blood in him. . .

The Olympics: Opening Commentaries

2010-03-01T10:33:00.004-07:00

I watched. And I took notes.

Today I present a comments about the Olympics in general.

1. The last winter Olympics I paid attention to were the ones where Bryan Boitano won gold in figure skating. That was, what? '88?

I only watched them this time because of this kids. We went out and got the digital TV converter and antennae just so Gemma and Josh could enjoy them. And they did. We all did.

2. But I didn't enjoy the same sports I remember liking back in 1988. The Olympics. . . just one more thing to lose its luster with age.

2B. Nor did I ever realize how insanely dangerous the Olympic games are. Human bodies, hurling themselves down mountains in a variety of ways. 2 weeks of it. Crazy.

3. The "proud Olympic sponsors" cracked me up. After McDonald's commercials, I'd scoff. Gemma would ask why. I'd tell her, "Because Olympic athletes don't eat McDonald's food."

4. Except for Steve Holcomb, perhaps. The first American to win Bobsled gold. He was also, probably, the tubbiest gold medalist in Vancouver.

Hey. More power to him. And to squeeze himself into that sausage casing/bobsledding onesie took real courage.

5. How did they decide winners of Olympic events before the age of digital timers? When most of the races were decided by tenths of a second--sometimes even hundredths--I marvelled. To time that now, no sweat. How did they do it a hundred years ago?

6. The kids could not watch any sport and remain seated at the same time. They kept getting up and spinning around in our family room, or leaping off of things, or wrestling each other. Their bodies seemed to be inspired by the idea that motion could be harnessed to accomplish greatness.

And when we went sledding on a gorgeous Colorado day with temps in the 50's and a hill full of snow, Gemma shouted, "I'm going to ride this like a bobsled!"--though it was Josh who was the first to master the run and jump and keep sliding form. It look a lot more like skeleton, actually. . .

7. Skeleton? See what I mean? These games are crazy!

8. I enjoyed Bob Costas. He did a great job interviewing the athletes, though he didn't do anyone tough. An interview with Plushenko, the Russian who landed a quad in figure skating, won silver, then whined to the Russian press that he should have won gold because the guy who didn't hadn't done a quad. That's the kind of guy I want to see interviewed.

But I have plenty more comments to offer on the stuff that did actually happen. You can look forward to a few days of them. Because this is what a post-cancer life looks like, friends. These are the things I have the energy to think about now.

The Hollywood Sleeve

2010-02-27T05:00:00.000-07:00

Lymphedema Part II: Treatment

There are two steps to reversing lymphedma in its early stages: compression and massage.

As for compression, the theory is simple enough: apply firm resistance to the affected area--in my case at first, an entire limb--and as your muscles expand and contract, they squeeze the lymph against the resistance and push it back up the lymphatic vessels.

So I got this sleeve on, you see, and a really tight glove, and every move I make against these garments is squeezing the lymph out of my arm.

I don't find the garments uncomfortable. I can get them on easily. They're not stylish, of course, but that's because I haven't gotten my hands on the catalog to order myself some leopard print versions. The only annoyance of them is that a day full of ordinary motion really tires my arm. The first few days I wore these garments, I had severe muscle cramping in my arm and hand just from cooking dinner. Stands to reason: there is resistance to every move I make now.

This also means my handwriting has gone to pot. Not that it had far to go. . .

As for massage: The lymphatic vessels are punctuated by one-way valves, which create a kind of suction. A few times a day, I press on the lymph nodes in my neck, right at my collar bone, to clear them out. Once they're empty, they create a suction in the vessels they're connected to. I help my body by gently rubbing my arm from the elbow up to the shoulder several times. This empties those vessels. Then I rub from the wrist up to the shoulder. Then from the fingers on up.

I was doubtful this actually accomplished anything. But I did it often because I'm pretty interested in reversing the condition. Then I took a plane ride down to Florida and felt my arm fill up as the plane descended to sea level. I started emptying and massaging like crazy and after a few minutes of it, felt a decided relief. So now I do it often because I know it works.

And the results? My right arm is now noticeably smaller than my left! I'm not sure what we're squeezing out anymore, but I think it's more than just lymph. More details about results are coming in Part III. But as I've said, the condition is mostly reversed and my arm is looking great.

So great, in fact, that I'm surprised Hollywood has not discovered compression sleeves. These actresses could be squeezing a good 100 - 200 mL of fluid out of their arms right before going onto the red carpet.

Lymphedema At Last

2010-02-26T05:00:00.002-07:00

I'm thinking back to my second consult with Dr. Mayfield, the one we had two days before my surgery, to the very moment when I said, "Wait. What's that you just said?"

No, this wasn't in response to his saying, "You are thin."

He had just said, "So what if you have a swollen arm for the rest of your life if you're using it to cheer at your child's graduation?"

This was in his Moment of Truth speech that I suspect he'd thought and prayed long and hard about delivering. The speech that probably got some air time during his residency, because surgeons have to give it often. The speech that, roughly translated into blunt language would sound like this: "The treatment I'm advising will suck, but dying sucks worse."

Hence the phrase "swollen arm" used with the other phrase, "So what?"

But here I am. I went through with the radical surgery that turned out to be less-radical than expected. I did the chemo. I did the radiation. My hair is growing back. My energy has returned. To gauge by all outside appearances and behaviors, I am no longer a cancer patient.

So it's no longer "so what?" if I have a swollen arm. I do, in fact, have a swollen arm and hand, this is not easily disguised and my attitude towards it is pretty straightforward: Lymphedema? Really?

So today's post will be an answer to the question on everyone's mind: What is lymphedema, anyway?

The lymphatic system is the one we did not learn about in Mrs. Saragoosa's seventh grade biology class, though she did very thoroughly cover all the others. I still know the term--check this out!--"Superior vena cava."

Nor did we learn about it in Mrs. Griffin's biology class Freshman year, though we did dissect a frog. (That was also the year Eric Lichtenberger and Sean Nolan teamed up for their science fair project and shot ants up in a model rocket.)

Nor did we learn about it in the same Mrs. Giffin's Human Anatomy course Sophomore year, though I did hang onto the enduring term, "canal of schlem."

That's right. We had time to learn about the "canal of schlem," but did not have time to learn anything more than the term "lymph node," and the fact that it was part of "the lymphatic system." I'm not being glib about this time issue. Go ahead. Take a look at a simple wikipedia entry on the lymphatic system. Pretty complicated!

The short version is this: Our lymphatic system runs roughly parallel to our circulatory system. It takes fluids to and from tissues and organs. And it's also a big player in our immune system such that when cancer cells form in some tissue, and start breaking off to hit the lymphatic highway and drive to a new organ, the lymph nodes act as little road blocks, trapping those cancer cells. The nodes will often destroy them. But sometimes they can't, or they get overwhelmed by incoming cells, and the nodes become tumorous themselves.

All of my brave little lymph nodes in my right armpit, shoulder and collar bone area that were within the surgeon's reach--including the one that really should have been out of reach--were removed during my surgery.

The radiation, which centered on my chest wall and up into my shoulder, damaged the delicate lymphatic capillaries, and whatever other lymph nodes that remained in the area. We have no way of knowing how much damage was done, or whether my body can or will repair it. We just know that my system stopped draining my right arm as it had been doing.

Lymph is getting to the tissue in my arm, but my body is not draining it out as it should. Left untreated, the whole limb would swell. And swell. And swell. I won't link to photos of this because the worst case scenarios are pretty grim.

Still left untreated, the lymph--a protein liquid--would simply harden. The skin would lose elasticity. The limb would remain permanently swollen.

It's more than a just cosmetic affliction, too. Even mild cases can cause significant pain in the affected joints. My swelling is very slight, and at this point, only remains in my first two fingers and first knuckle. But it's tight, all right. Hard to grasp things with fine motor control, too.

It's also worth noting that lymphedema is not just a breast cancer treatment complication. Sometimes people get it because of a genetic trigger. Or trauma to a limb. It's most common in arms and legs, but it can also afflict parts of the torso.

I think, if I had to choose, I'd want it in an arm. See how nicely that turned out?

I am nowhere near the worst case scenario. I noticed mine while it was just a wee bit past a "pre-clinical" level--meaning it was barely detectable with the naked eye. Now, it is mostly reversed, and I'm still hopeful that we can get rid of this last little bit in my hand. Thank you for your prayers for this.

Tomorrow's post: Treatment.

Alternately Titled: What to Say to People Who Ask Why You're Wearing Pantyhose On Your Arm.

Breast Cancer Survivor Gear Thursday

2010-02-25T05:00:00.001-07:00

From now 'till the end of this blog, I'd like to spend Thursdays exploring the wonderful world of pink products. We know all about the key chains and water bottles and pins. What else is out there?

I have a few ideas already. But please, do your part: send me links to any Pink/breast cancer-related product that you find amusing or bizarre or funny or cool.

Big thanks to Julie B for sending me this one. It made me laugh. And laughter, after all, is a primo piece of survival gear.

Oh--and if you can think of a better acronym for this feature, do pass it on.

B, G and J Day: Behaving Badly

2010-02-23T22:59:00.002-07:00

B:

Bryan has been checking Craig's List every evening and weekend morning for months, looking for bricks. If ever the phrase "Why buy new when used will do?" applies, it applies to bricks that will be used to make garden pathways.

Sunday morning--BING!--a "load" of bricks for $65. How much is a "load"? Four trips with our Explorer, that's how many. Two trips were that Sunday, and he made another both last night and tonight. The owner is moving, and these are bricks she hauled up from Pueblo when she came upon them as left-overs from some guy's new fence.

(If it's made out of bricks, do we still call it a fence?)

There were a few other pavers in the pile, too. Bryan took 'em.

Tonight he arrived home and pronounced the job finished. "Except for this one square paver. It was frozen to the ground. I couldn't pull it up. I couldn't kick it loose. I tried hammering a piece of wood against it with another brick--nothing!"

I kidded him, "And here I thought you were a man of perseverance."

A naughty grin slipped out. "Well," --uh-oh-- "I even tried warm water on it."

Hmm. As in. . .he knocked on this person's door and asked them for a cup of hot water?

He saw that I was puzzled and said, "It wasn't exactly warm water."

Pause.

Amy: "UGH! I'm putting that in the blog!"

G:

This morning at breakfast, Gemma told me how she spent a little time last night looking out her bedroom window, counting the airplane lights that flew by.

How pleasant. I told her that I used to do that when I was a little girl, too.

Then she said, "Yeah. And I use my binoculars to look into people's houses and see what they're watching on television."

J:

When we grocery shopped last week, each child started the circuit with a small bag of gummy worms for them to enjoy. You know that bribe. It works well for us, too.

It's Joshua's modus operandi to eat his treat one after another. Gemma likes to make hers last and last. This is why, when we got to the last aisle, she still had three gummy worms left and he'd been eyeing them since four aisles ago.

I turned back to the cart with a handful of yogurt to find Joshua kind of on top of her in the little bench seat they shared. And she was kind of. . .groaning, but it wasn't loud. It was muffled and annoyed.

"Josh, sit down," I told him.

He did. With a great big smile and a glistening, red gummy worm on his finger. Just when I realized what he'd done--that is, when I realized that he'd dug this worm out of his sister's mouth--he stuck it into his own.

I was laughing to hard to tell him that this was disgusting. As for Gemma, she sat there, a bit stunned, trying to calculate whether this kind of thing is allowed. On the one hand, she'd never heard an express prohibition against stealing food out of another person's mouth.

On the other hand, it was her gummy worm and she had been sucking on it!

On the other hand, her mother was now bent over from the laughter.

On the other hand, it had been in her mouth. . .

Hair-ful

2010-02-23T05:00:00.001-07:00

It's growing back.

I've told you Joshua's observations. First I felt "poky," then "like a caterpillar," then "like a cat." I got home from my family reunion weekend last Monday and he gave me a good pet. I asked him, "What do I feel like now, Josh?"

He said, "Like Mommy."

I know that's really sweet. Believe me, for the first twenty minutes, my heart gushed. But then. Well. Come on, Josh. When has your Mommy's hair ever felt like this? Get real.

(Oh, take it easy! Of course I didn't say this to him!)

It is about half an inch long now. Seems to be as thick as before. I have a solid patch of white hairs right above my forehead, slightly to the left. They were there years ago, but were easy to hide.

When Dr. Markus saw me and remarked on the new growth, I pointed to these white hairs and said, "Do I have you to blame for these?"

Was that mean? Making him think it was a chemo thing? Meh. He didn't seem to care.

He did say, "I think it's very distinctive!"

Oh?

"Yes! Are you a reader of science fiction fantasy?"

What? Do I look like a 15 year old boy? Wait. Don't answer that. . .

"The very powerful are often marked by a streak of white hair. You would be, well, like a sorceress."

Moment of silence. I'm fairly certain I'd never been compared to a sorceress before. What does one say to this? What did I say?

I shrugged and whispered, "Behold!"

He then said, "I've revealed what a nerd I am." I wanted to tell him, "I think being a nerd is very distinctive!"

And one of these days, I will tell him, "I'm glad you are a nerd. I'm a nerd. I'm working hard to turn my children into nerds. This world is a better place because of nerds!"

But his comments do make me think of Rogue from the X-Men. Check out her streak of white hair:

I'd often thought that if I had that much of a concentration, I'd go for it. But my clump makes a streak about a quarter of that size on just one side. Before I lost my hair, I colored just this streak.

Then, just this weekend as I watched the Olympics, I saw a Pantene commercial on which the model--a hair model!--was a dark brunette with a long streak of white hair.

And it wasn't even for the old-lady version of their formula. So maybe, friends. Just maybe. . .

Half an inch seems to be the length that people interpret to be a chosen hairstyle, and not a side effect. I was wearing a hat on the airplane and a woman remarked, "Fantastic hat! Where did you get it?"

I told her and then added, "I saw it, liked it, was bald at the time, so I bought it."

She looked surprised and said, "I was bald once, too!" and we high-fived. (Note to self: Is there a secret Survivor's handshake I should know about for these moments? Google it.)

My point is that she didn't have the "Oh, you've got cancer!" look that I've learned to read pretty quickly.

A 16-17ish old girl in the Commissary stopped me to tell me how "cool" my hairstyle was and how "awesome" it was that I "went for it."

So, I inspired one of our nation's youth this week. What have you done, slackers?

I also have all of my eyebrows back. That was an awkward few weeks, waiting for them to come in. When you have just stubble up there, they look like two smudges, like hobo make-up mis-applied.

And stubbly eyelashes! They looked so icky for a while. But they are back now, too.

All further proof that we are finished with the hard treatment and that my body is getting on with the show.

Speaking of which, a photo below, taken at our reunion. I'd started entering the game room by sliding in front of the entrance a la Tom Cruise in Risky Business (a movie I've never seen, but who hasn't seen that scene?)

Mom, ever the faithful photo-historian, insisted that I do it once for the camera.

Here I am. Take those old records off the shelf. . .

Current Standings

2010-02-22T05:00:00.000-07:00

I'm pretty excited about the coming 6 weeks of blogging. I've thought of some new features and I've been storing up some topics over the weeks of my web silence.

But first, the medical details.

1. I feel great. I don't remember if this is how great I felt physically before I was diagnosed. But now. Man. I feel like I am flying. I have energy that seems boundless. I am functioning fully on a mere 8 hours of sleep, with no thought of wanting a nap. (For months there, I was getting a good 10-11 hours at night and could have napped at any given moment.)

It's just terrific to be well.

2. My skin has healed beautifully following the radiation. There's actually not much of a scar left from the breast removal because they burned it off. So I got that going for me.

I do have a deep tan, and the radiation field made a rectangle on my upper right torso. So certain evening wear would be ill-advised for a while. Dang. Just when I was thinking about showing some cleavage.

Heh heh heh. . . Breast cancer humor. . .

3. The lymphedema has reversed a great deal. Thank you for your prayers for this. More lymphedema details to come, as I've been promising. . . But it's not a problem that will ever go away completely, so I feel like I have time to get around to it.

"And you've sure been usin' it!" said the hippo.

4. As for my remaining treatment, I will still get Herceptin every 3rd week until August.

I started taking Tomaxicin this week. More on that drug later. I will take it every day for 5 years.

I'll have an EKG every 3 months until I'm done with Herceptin.

I'll see Dr. Science every 6 weeks or so. In a few months, if he hasn't had reason to do so by then, he'll run a scan to check for glowing masses of cancer.

But I'm utterly confident there won't be any to find. It's not that I'm just hopeful. Or wishful. I'm really convinced that this cancer is gone, or will be by the time my treatment is completed. I might be wrong. If I am, I will be the most shocked of all.

After the Herceptin is finished in August, I'll go 4 more years with the Tomaxicin and sparse visits to Dr. Science. And at the 5 year mark, he'll pronounce me "cured."

But I'm living like that pronouncement has already been made.

5. I'll tell you what could much all this up: if my remaining breast cells turned cancerous. If even just one of them mutated, that'd be it. I would be right back at the starting line again.

There's only one way to be certain it doesn't happen. That surgery is scheduled for 25 March. With Mayfield, of course. Plenty more to write about relating to this point.

6. Bryan is doing so well, too. It's transition time for him in terms of his career, but he has some pretty good prospects for jobs to transition into. More on that later.

7. And the children! I have lots of B, G and J stories to share.

It's great to be back, and it's great to know you all are with me.

A Blogger Promise + Prayer Request

2010-02-21T21:28:00.003-07:00

I've been behaving badly.

While in the midst of a trial, I was quick to share the details. I reflected, I pondered, I noted, I reported, and you all humored me.

Now that we are near the end of this race and our days are full of sweetness, I've carried on my merry way. Oh fickle Blogger that I am!! How could I treat you so?

So here's my promise: I will post every day between now and 31 March. Not only do I have some medical news and updates to share, not only do I have another major surgery scheduled for 25 March, but I now have a life post-big-treatment. I'll write about it.

Whether you find it interesting--this regular life of mine--is another matter entirely. If you don't, that's kind of your problem, though. Right? I mean, I'm just happy to have one. . .

As for the prayer request:

You remember my neighbor, Stefanie, the cancer survivor who moved in this summer. She's been suffering for months from side effects/damage from her treatment and Monday morning, she'll undergo major, major surgery. They expect a 6 week recovery, the first week of which must be spent in the hospital. And the procedure itself is very complicated--I almost want to call it "creative" as they'll be redirecting her intestines.

Please pray for her, her doctors, her children (3 daughters ages 5, 9 and 11) and her husband, who is active duty Army away at a mandatory school right now. Pray for wisdom and skill amidst the doctors, peace over all, no complications and, of course, complete healing.

Surfacing

2010-02-11T20:27:00.002-07:00

It's been a while, hasn't it? Thanks for checking back to this blog. I still owe you a lymphedema post. It's not ready yet, but what I have so far is pretty rockin', though I say it myself.

My last post was from Tuesday 26 January. Let's back up to that time. . .

On 25 January, I finished radiation. Joshua threw up all night long following our family's post-radiation celebration. So ended the Year of Peyton, my 34th, because on 26 January, I turned 35.

The day of my birthday, we didn't do much at all because we were all exhausted from Joshua's travails.

The next night, 27 January, Gemma, Bryan and I all suffered whatever Josh had, to the power of 5, it seemed. All night long. 3 very miserable people.

I thought repeatedly--whenever I approached the commode--

#1: This feels rotten right now, but it will get better.
#2: This isn't even that bad. It's a lot better than it is in, say, Haiti.
#3: 7 months of chemotherapy and radiation and a suppressed immune system and I didn't get sick one single time. But 2 days after it all ended. . .

The next day, we tried to recover. The day after that, Friday, we prepared for our vacation. Early Saturday morning, we left for lovely Sanibel Island, to visit Bryan's parents, for 10 days.

We had a terrific trip. The kids are great travelers. Our time was relaxing and fun. Some days were warm enough to go to the beach. Some were pretty cold, so we found some indoor activities. All around, it was an A+ trip.

I think the "plus" was because it came after we knew we were finished with treatment. And I thought often during our time there--

#1: I'm alive I'm alive I'm alive I'm alive I'm alive I'm alive.

Courage

2010-01-26T05:00:00.001-07:00

I originally wrote this as part of the first post about my last radiation treatment. But the post was too long, and I don't want you to miss this story.

On the last day of treatment, the radiation techs gave me a certificate before I left. Congratulations on finishing your treatment, that kind of thing. And then: "We Salute Your Courage!"

This stuck with me as we drove to the restaurant, and again as we drove home. I realized something I hadn't been able to piece together before. What were all these tears about? At the end of chemo? And now?

It's not relief. Maybe it is a little. But I can tell you that mostly, I'm not feeling relief.

But that certificate. . . Yes. This was it. There's the thought out there that doing chemo and doing radiation took courage. It didn't. I mean, what was my option? You do what you got to do, right?

There's nothing brave in that. Maybe if the option was a fast, painless death, then choosing a bummer treatment to live instead would have been a little courageous. But dying from an untreated cancer? In my mid-30's? That would have been a ton worse than anything I lived with the past few months.

No. I realized that the courage starts now. At least, I need it to. How to go forward without the cancer? After these several months and the tidal wave of love that has poured through our lives, I'm a changed person. There's no going back to my old life. But what does my life look like now? How do I go on without this giant circumstance?

I think all the crying has more to do with the grief over the end of that circumstance, over a changed life.

Don't get me wrong: Life will go on. And it will be far superior to what it would have been if we had not run this race. (Well, it's not quite over, is it?) But going on, and being willing to go into a new life, as a new person--this is what takes courage.

At least, this is what I came to believe and feel in that deep place as we approached our home. I prayed right then, that God would give me all the guidance and courage I would need.

Then Bryan picked up the mail from our box. In it was a package from my friend, Sarah. I thought 2 things:

1. "Oh! I keep forgetting to call her back!" and

2. "She mentioned wanting to send something earlier, but not quite getting around to it yet. I guess this is it!"

We pulled in. Piled out. Got inside. I opened the package. In it was a sweet note wishing me a year of--I am not making this up--"Hope and Courage."

She sent a pad of paper with "Hope" written on top.

And a pearl bracelet with a clasp that says "courage."

I tell you. . . it's almost too much love for one life to hold.

Radiation: End of a Road

2010-01-25T21:13:00.003-07:00

These last 5 treatments of radiation have been different. I mentioned this already--about the electrons and it being focused on the scar line.

I didn't tell you yet about my appointment 2 weeks ago, when they needed to prepare for this last 5 day extravaganza. Dr. Tanner came in to the treatment room, and using the $12 surgical marker with my name on it, traced an oval around the scar. A general outline about 2 inches around it on all sides. He didn't use any special instrument for this--just his eye and his hand and a $12 marker.

They took a photo of it.

They made a tracing of his marker line.

And a week later, I went into the treatment room to find an extension hooked onto the radiation machine. It was basically a frame of a cube. Inserted into the bottom plane of that cube was a square slab of lead with a hole cut out of it that fit the exact shape of Dr. Tanner's drawing. This was to shield the rest of me and let the radiation hit only that concentrated area.

Yeah, yeah, I got that. But it amazed me that they'd pour a mold based on the marker outline that my 6 year old could have drawn. "Amazed," because it had to be Dr. Tanner who drew it. The techs couldn't do it, nooooo, it had to be the bigshot radiologist.

Every time, for those last 5 treatments, this cracked me up. I asked what they did with the slab after I was done. If they were going to throw it out, I'd have asked to keep it. Now that would have been a conversation piece.

But they melt it down for use with the next patient.

Speaking of other patients, I did indeed outlast all the others who had dates before mine. And I outlasted all the others added right up to January 11.

I brought the kids with me all of last week. I told them On Friday that this was their last treatment--Mommy still had one more, but they would be with Betsy that day--so they needed to celebrate the last one with me on Friday.

After I got dressed (out of my gown, of which Joshua said each day, "That dress looks cute,") I brought them into the hallway outside the treatment room where a ship's bell hangs. Next to it is a brass plaque with a poem engraved,

I ring this bell
Three times to say
I've finished my course well
And I am on my way

I lifted Gemma up, and then Joshua, and let them ring the bell. They did it with great joy, free of concern, oblivious to the meaning of it. And they rang it loudly and a lot, a lot more than 3 times, because it is fun to ring a bell.

I cried and cried. Mostly because I can look at them and see that they don't get it. And I'm glad about that. Thankful. They have no idea what this year has been for me and Bryan. What they know and care about right now is that Mommy won't have a rigorous treatment schedule anymore, and the appointments she will have won't make her tired.

Today, it was supposed to be just Bryan and I, but then Betsy's son got sick, sick, sick with the flu, and those are germs the Ponce family doesn't need right now. So the kids came again.

They didn't ring the bell this time, and neither did I, because a patient went in for treatment right after me and I didn't want to risk disturbing her. My version of the bell, I think, was tossing my gown into the hamper, and leaving behind my very own cubby hole at the radiation unit.

I cried and cried again. I'm crying now as I tell you all about it.

We went to dinner together at Fargoe's, a very fun pizza place, and it was our first time, so it felt extra festive. At the table, we played 20 questions, a game Gemma loves, and Josh, too, though he has his own little version of it. . .

They have a little game room, too, where Bryan tried his hand at PacMan. Just seeing that was worth the trip. The picture I'm making is that we had a fun evening as a family. It was a simple delight just to be together. A delight to see my children enjoy themselves.

A delight I hope to enjoy for a long time coming.

Will you bear with me for a story

The radiation techs gave me a certificate before I left. Congratulations on finishing your treatment, that kind of thing. And then: "We Salute Your Courage!"

This stuck with me as we drove to the restaraunt, and again as we drove home. I realized something I hadn't been able to piece together before. What were all these tears about? At the end of chemo? And now?

It's not relief. Maybe it is a little. But I can tell you that mostly, I'm not feeling relief.

But that certificate. . . Yes. This was it. There's the thought out there that doing chemo and doing radiation took courage. It didn't. I mean, what was my option? You do what you got to do, right? There's nothing brave it that. Maybe if the option was a fast, painless death, then choosing a bummer treatment to live instead would have been a little courageous. But dying from an untreated cancer? In my mid-30's? That would have been a ton worse than anything I lived with the past few months.

No. I realized that the courage starts now. At least, I need it to. How to go forward without the cancer? After these several months and the tidal wave of love that has poured through our lives, I'm a changed person. There's no going back to my old life. But what does my life look like now? How do I go on without this giant circumstance?

I think all the crying has more to do with the grief over the end of that circumstance, over a changed life.

Don't get me wrong: Life will go on. And it will be far superior to what it would have been if we had not run this race. (Well, it's not quite over, is it?) But going on, and being willing to go into a new life, as a new person, is what takes courage.

At least, this is what I realized and felt in that deep place as we approached our home. I prayed right then, that God would give me all the guidance and courage I would need.

Then Bryan picked up the mail from our box. In it was a package from my friend, Sarah.

Haiti Orphans Update

2010-01-25T21:09:00.002-07:00

It's Monday night as I write. I read in this morning's news about the children who've been joined with their families.

It's probably impossible to overestimate their shock in having gone from utter devastation and lack to a life of love, belonging and provision. A lovely picture of salvation, now that I think about it. . .

It's also probably impossible to overestimate their new families' joy at having them. I am good friends with a few of these families and they are just about ready to climb onto their rooftops and start singing.

Haiti Orphan Update

2010-01-23T14:17:00.002-07:00

Yowza!

The 82 Colorado-bound orphans are in the air as I type, being flown to Florida. Governor Ritter has chartered a flight with a medical crew to meet them there and fly them into Denver. They'll be medically evaluated while in the air.

Then their families will pick them up this evening! They shall sleep in their new beds tonight!

Our church alone will be welcoming 19 new children this weekend.

(I think that's the number. . . And, actually, I doubt any of them will be brought to a church service so soon upon arrival. But still!)

Thank God for their arrival, for their families, for the hundred of workers on both sides of the border who worked to make this happen.

And let's continue to pray for the orphans who were not already matched to families before the earthquake. There is still hope that they will be evacuated, too, under a humanitarian visa.

Breast Loose and Sugar Free

2010-01-22T17:56:00.005-07:00

I have a lot to share from the last week or so, but Bryan has been out of the country this week, so I've had extended kid-duty on top of the extreme fatigue from radiation.

After reading that, I know what you want to know, so I'll tell you: Naples.

He's due home in an hour. I'll be sure to tell you if he got me anything nice. . .

Speaking of promised reports, perhaps there is a question among you about my hair. It is coming in. 2 weeks ago, Josh felt my head and said, "You feel poky." One week ago, he felt it and said, "You feel like a caterpillar." Yesterday: "You feel like a cat."

It seems to be as thick as before. It also seems to be the same color, though this is deeply disappointing for Gemma, who was hoping for purple. It's not long enough to know yet whether it is curly.

My body hair is back, too. Up until a few days ago, I had gone 5 months without touching a razor! Of course, I went longer than that once while in college, with a very different result, but that was not cancer-related.

The shocking part about the Return of Hair are my eyebrows. There they are! I had gotten used to seeing my face bald, and had been drawing in thin brown lines when donning a wig. But here are the real things again and can I just say that eyebrows are strange. Go ahead and look in a mirror right now. Stare at your brows. What are those things all about??

But enough chit-chat. Time to turn to our title for the day:

The radiation is burning through the layers of my skin such that I cannot wear any supportive garments. Way too uncomfortable. Instead, I've been wearing Bryan's big denim shirt over a top and that has at least protected me against an appearance that is both immodest and freakish, what with one swinging free and all.

I've been able to exercise each day (so the fatigue can't be as bad as that from chemo, I keep reminding myself), but even then, athletic support is not an option.

I happened to explain all this to Mandy who expressed utter disbelief. Wasn't I completely uncomfortable on that side? Wasn't it killing me not to be supported?

Hmm. Come to think of it: No. And that's odd. I figure it's because my breast is trying to stay under the radar right now, kind of like, "Hey, girl, don't mind me. I'm totally fine here. Not going to bother you at all. Not going to turn cancerous on you. So, like, there's reason to cut me off or anything. It's all good."

"Yeah, well, you know what, breast? I appreciate your co-operation and all, but next week I'm calling Mayfield's office to schedule your date with destiny."

So now you all understand the phrase "Breast Loose."

As for "Sugar Free," let me back up to about 3 years ago. In January of 2007, I started experiencing screaming headaches and throwing up a lot. I saw a few doctors. We ruled out things like ciliac disease and lactose intolerance. And I eventually figured out that I couldn't tolerate refined sugar. There was something about the chemical used to refine it that was toxic to me, and even a small dose of it sent me into the same symptoms as food poisoning.

A lot of good came out of this. For starters, I broke what was actually an addiction to sugar. I had been swamped buy a post-pardem depression that just wouldn't go away--until I stopped eating sugar. On the whole, I was very, very glad to be free of it.

And I could eat organic sugar, which is not refined in the same way. So it's not like I've had nothing sweet to eat for 3 years. The difference is that once broken of the addiction, I had few cravings for a dessert. Chocolate no longer held power over me!

The intolerance was still evident as recently as this past Christmas, when I did a lot of baking with the kids. This required testing the batter (and I wasn't using organic sugar), and just a lick would trigger the start of the headache, so I knew not to eat more and trigger the rest of the consequences.

Then. Then. Then. . . The kids decorated a Gingerbread Train. And the jelly bellies on the rim of Gemma's box car called to me. Surely one wouldn't cause a headache. And one did not. Nor did two, nor three, nor, well, that was the end of the box car trim. I ate them all. To no ill effect.

Hmm. Maybe the makers of jelly bellies don't use refined sugar. Maybe it's all fructose corn syrup. How about Twizzlers? Josh had slapped a few onto the side of his car with great abandon. And. . .nope! No problem at all!

Boy, this was strange. Last week, there were Holiday MnM's leftover from our baking that were having such a fun little party together in my cupboard, I couldn't resist joining them. I loved to eat them! They loved being eaten! I tried just a few. . .no headache! Later, I ate several more. . .still fine!

And so it is. No more intolerance to sugar. I feel like I've been healed. (Yes, that's a little rich, coming from someone who has escaped the grip of Stage III breast cancer.) And I've been having a great time revisiting my favorite deserts of yore: Culver's Chocolate concrete with peanut butter cups; molten lava cake from AppleBee's--not to mention their spinach vinaigrette salad I'd had to forgo because the dressing is made with sugar.

Ah. . . The week has been delicious.

I don't at all know what to make of this. I don't think I'll know, this side of eternity, what was going on inside of me. And I don't think I would mind if the intolerance returned, though it is nice to partake of some yummy things.

It's a good sign that, though I've been Sugar Free (e.g. free to eat sugar!) for a week, I am actually down 2 pounds of weight. I have the ambition to avoid an addiction this time around--the secret of which, I think, will be to eat only the sweet things that are really terrific, and to avoid the myriads of other sugar sources ever present.

In short, I think I'm going to be OK.

Haiti Orphanage Press Release

2010-01-20T11:24:00.002-07:00

Orphans begin procedures to depart Haiti at U.S. Embassy

(Port-au-Prince, Haiti)

On January 20, 2010, 133 orphans from the Maison des Enfants de Dieu
(Children of the House of God) orphanage will begin the difficult process
outlined by the U.S. Department of State for humanitarian parole and onward
transportation to the United States. In accordance with instructions received
from the State Department, as relayed by the Joint Council on International
Children's Services (JCICS) at 8 p.m. today, orphans along with orphanage staff
members have been instructed to arrive at the U.S. Embassy as early as possible
on Wednesday morning. JCICS warned that no food, water or facilities
would be available for the children while processing at the U.S. Embassy
Port-au-Prince.

JCICS further relayed that orphanage requests
to the U.S. Embassy for security and transportation for the children have been
denied by the State Department. The U.S. ministry associated with this
orphanage, For His Glory Adoption Outreach (FHG), was also asked to stop
requesting security, transportation or even water at the orphanage location.

Following discussions with staff and board members in Port-au-Prince, the
difficult decision was made that all 133 children, including approximately 60 children under the age of 3, will begin early in the morning of January 20th to walk the over 2 kilometers to the U.S. Embassy Port-au-Prince. This decision was made due to the limited staff available and the increasingly dangerous security situation at the orphanage in Port-au-Prince.

The staff will carry as much water, food and baby formula as possible with
them for the orphans while processing at the U.S. Embassy. JCICS relayed that
once processing is completed, the orphans will travel to the United States on
"cargo jets to locations that are not often known until an hour or so before the
flight leaves."

Kim Harmon, President of FHG, acknowledged that "this
arrangement is far from ideal for the safety and well-being of the children. We
are calling to all who care about these precious children to pray earnestly for
their safety tomorrow."

AP!: They might have made it to the Embassy at the time of this posting. But if not yet, then, God, please complete that journey for them and bring every last one safely there. And please provide water for them at the Embassy as they await their transport.

Haiti Update

2010-01-19T18:06:00.002-07:00

There is a tremendous story unfolding for about 300 orphans in Haiti. 54 of them made it home to PA, as I'm sure you've heard. My friends here have been told that the way has been cleared for them to come to the States within a week.

The big concern right now is transporting the children to an accessible air field. The other concern is for the orphans being adopted by Canadian families. There is some kind of big hitch between the Canadian and Haitian governments. . . We hope that can be straightened out very soon.

As my friend Suzanne points out, a lot goes into these international matters. I didn't mean to suggest that there's one piece of paper in front of the leader of each country that simply awaits a signature. But at the end of the day, there is either the will to make something happen, or there is not. All indications show that our Secretary of State wants to see these children evacuated. The big question was what kind of attitude the Haitian government would have. Thank God, it seems they are willing enough.

Let's continue to pray for these children as they await the execution of plans designed for them. Scarcity of clean water is still their biggest danger, and of course, lack of medicine for those infants who need it.

I so look forward to reporting to you about the day I meet these children at church! It's not that their survival and joining with their families makes the devastation any less heart-breaking. But it is good to rejoice when we can over what we can.

Lymphedema Update

2010-01-18T16:46:00.003-07:00

I also went to my follow-up today. The therapist measured my arm again and the swelling has gone down a bit. She's very glad to see this. It means I am 'responding well' to compression.

I am now wearing a more permanent sleeve, made out of that heavy-duty panty hose one sees advertised in coupon additions to the newspaper.

Overall, I'm very hopeful, too, that this lymphedema will reverse. I have plenty more to tell you about, and I know you're all dying to know how one "drains" one's own arm. All in due time.

Live from the Chemo Barn!: Down the Road I Go

2010-01-18T16:39:00.002-07:00

(Written while there this morning, but posted after getting home.)

I’m not here for chemo, of course. Just an early morning zap, and then a visit with Dr. Science, and then my Herceptin.

About the zap: Today was the last day for treatment to the larger area. I did 28 of these, consisting of 3 zaps each, resulting in a rectangle-shaped 2nd-3rd degree burn on my chest wall, with a few trailing burns over my shoulder. The other result, I say with great hope, is that any remaining cancer cells hovering near the tumor were burned crispy.

My last 5 treatments will be an electron treatment focused closely along my scar. “So far it’s been photons,” Dr. Tanner said.

I’m glad someone bothered to study physics.

They’ve rearranged the chemo barn since last I stopped by. They took apart those rows of 3 chairs and turned the whole room into pairs only, each chair tilted towards its partner. I’m not going to call it cozy, but it is much improved.

Other improvements: the pharmacist. He is a tall guy, 30-something, and he works in the room behind the nurses’ desk, preparing our various bags of drugs. Before, he had a hairy neck, scruffy face, and he wore sweatpants and t-shirts. After, he is clean-shaven—even the neck!—and he’s wearing a crisp set of scrubs.

Before and after what?

Before and after I commented to one of the nurses about “that guy” seeming a little creepy, and why didn’t he have to follow the same dress code as everyone else who works here?

It wasn’t a complaint. It was a comment. Delivered with a smile. I think.

Lest we give into the fallacy of the false cause, I should emphasize that the nurse didn’t say to me right then, “You’ve got a point: I’ll mention it to management.”

Am I going to follow up to learn what really happened? No.

Ah, I’m back now from my appointment with Dr. Science. Only, he was on call today at Penrose hospital, so I instead saw Rose Gates, the nurse practitioner. Remember her? When she walked in the door, I thought, “Doh! We never reached consensus on what to call her!”

I had some questions about future treatment that only my treating physician could answer, like when would I do a routine scan? And when would I start taking Tomaxacin? And what is that drug, exactly?

Rose Gates asked me when I would see Dr. Markus next. I said, “It’s not that I’m not pleased to see you, Nurse Practioner Gates, but I was actually scheduled to see Dr. Markus today.”

And so it is settled. This is what I have called her. This is what I will continue to call her. You all can go ahead and call your nurse practitioners whatever you like.

Did I tell you before about Nurse Nicole in the Chemo Barn who is a Canadian married to a USAF officer? They were stationed in Alabama for 3 years before moving here and when I first met her, she spoke with a Southern accent.

A heavy one.

“It’s so embarrassing,” she told me. That would probably be a rude thing for her to say, or rude, perhaps, that she’d find it embarrassing, or rude for me—though she both felt it and said it—for me to report. But there it is.

Maybe if it had been felt and said by an American and not a Canadian, I’d be slower to share it. Instead, I'm slow to blame a Canadian for feeling embarrassed about picking up an American southern accent. Eh?

Today, she is my nurse and I noted that she had lost her accent all together. She smiled broadly and told me that she’d just had a visit from her family for 3 weeks. The traces of Alabama have been flushed away!

“But you don’t sound Canadian, either,” I said. “You are now Every-woman!”

What else can I tell you?

I look around at the place I’d seen every Monday morning for 18 weeks in a row and it’s different: The patients are all new—no Kathy from my first day who was also here on my last; no British lady whose breast cancer turned up stage IV 12 years after her diagnosis; no young guy with his father who though Courtney the med tech was cute; no middle age businessman who worked on his laptop the whole time and fiddled with the cell phone clipped to his belt and hustled off at the end of treatment as though being here was just one more appointment to knock out in his day.

The whole crew is new. And the start of their sojourn reminds me that I’m so near the end of mine. You’d think I’d be all smiles about that, about the sheer prospect of moving on. But when I consider it, I start crying. Another layer of grief I didn’t see coming. A layer that will fade away as the others have, I’m sure.

Haiti Update

2010-01-17T19:33:00.002-07:00

Salvation Army has reached the orphanage, and they now have water and food to last a few more days. Praise God for this.

But there are several babies there who need special medication and other urgent attention, so their need is still very dire.

The amazing news is that all the official "boxes" have been checked to evacuate all of these orphans--recall that they had already been matched to adopting families in the US.

Only 2 boxes remain: The Secretary of State needs to approve this evacuation, and so does the President of Haiti.

I do not know what would go into Clinton's calculus for deciding, but on the Haiti end, we recall that this President is not a very good man, and that he doesn't care much about the welfare of his people and that part of the reason the adoption process takes so long is that his government milks thousands upon thousands of dollars out of the adopting families under the guise of 'paper work.'

Whether he will let these children--and the cash they represent--go without another cent spent is a matter for prayer.

Please pray that both leaders will sign off on this and that these children will join their "forever families" in just a few days.

Prayer Request

2010-01-16T11:02:00.002-07:00

You all know of the devastation in Haiti. Bryan and I particularly attuned to the welfare of an orphanage there called For His Glory. It is home to about 120 children, many of whom are already part of a family in the US, but who are waiting there for the 2 - 3 years it takes for their paperwork to be processed.

We are friends with 4 different couples in our church who are pursuing adoptions from this orphanage. My heart aches for them as they are helpless to protect their children right now. Helpless, that is, if it were not for prayer and a Mighty God.

The following is a copied post from their web site:

URGENT CALL FOR PRAYER

We received word from Pierre this morning that the situation in the orphanage is becoming dire.
We would like to ask EVERYONE that receives this to use this information to get on your knees before our Lord and ask Him to provide.

We have one nanny that is deceased and the orphanage needs her body to be removed.

The orphanage has no drinkable water.

In addition they need:
formula for babies
medicines
IV fluids (one child is currently on an IV)
charcoal to cook
diesel
cash to buy supplies if they find them.

They are running out of cash and there are no banks open to get cash, so it needs to be delivered by someone already on the ground or by helicopter.

Others are beginning to rob them of what supplies they do have.

There are helicopters flying over the orphanage and they have made a sign on the roof that says they are an orphanage and need help.

The staff is also working to get together all the paperwork for each child that has an adoptive family in a way that it can be attached to their body if there is an opportunity to evacuate.

For His Glory is doing everything we can on this end to contact people who may be able to help. Please pray. Currently, that is the best thing you can do to help.

Trusting in Him,
For His Glory

Wellness Update

2010-01-15T11:10:00.004-07:00

I'm wearing a pressure sleeve and a pressure glove, so typing is not all that easy.

Or, I could say that typing is easy, and making typo's, even moreso. All this makes me given to brevity.

My follow-up with the lymphedema therapist is on Monday, whence we'll see whether I'm responding to the pressure-sleeve-therapy. I also "manually drain" my lymphatic system. Who even knows anything about the lymphatic system let alone that one could "manually drain" it?

I have 7 radiations left to go, and my skin, this week, has finally screamed in protest. I'm glad I don't have a nerve connected to that chest wall, because it's now covered in a 2nd degree--bordering on 3rd degree--burn.

After the 3:30 treatment, it's pretty uncomfortable (from the bit that I can feel). But by morning, it's converted to mostly a tan. In all, I'm pretty thankful the skin has been responding so well. I'm thankful, too, for the lydocaine-aloe gel that I can apply liberally.

On the other hand, the rest of my body is pretty aware that a chunk of it is having the cancer burned out of it. And it's working really hard to restore the damage. I'm so exhausted. All the time. I'm sleeping about 10 hours a day, and still feel like I could take a nap at any given moment.

Ah, well. Only 7 more treatments.

Happy Birthday

2010-01-12T10:52:00.002-07:00

To Sister #4!

Today's lymphedema appointment went very well. I was really pleased with the therapist's knowledge and experience. She says the chances are good that we can reverse this. More details to come. . . In the meantime, thank you for your prayers.

As for Bryan's fabulous shirt: One of his colleagues in Korea--whose call sign is "Rude Boy,"--had a shirt like this. To his great credit, Bryan couldn't resist having one made for himself.

A Rhinestone Studded Evening

2010-01-10T20:47:00.006-07:00

Bryan and I went to the JFCC-IMD inaugural awards dinner on Friday night. 2 months ago, this evening was to be the General's retirement party, and I told Bryan I wouldn't plan on it. I had no way of knowing what I'd be feeling like 5 weeks into radiation, right? And at 30 bucks a ticket, it wasn't the kind of thing I wanted to have to decline at the last minute.

1 month ago, it became both the General's retirement party, and the Christmas party for the command. Same price. I had the same answer.

2 weeks ago, it stopped being the General's retirement party, because he's no longer retiring. It continued to be the Christmas party and now it was also to be an awards dinner. And Bryan had been nominated for field grade Officer of the Year.

And I was feeling pretty good with the radiation.

So then:

The evening was a delight. They held it at a hall on the Air Force Academy campus and the meal was actually really delicious. The people seated at our table were very talkative, a few of them were very funny. I had a great time.

Bryan won the award. As he went to the front to receive it, I told James, who sat next to me, "Shout out for him to take his jacket off." And James did.

Everyone in the hall laughed. Then silence. Then I called out, "No, seriously, take it off!" and everyone laughed again. But it was a less confident laugh. A "What the heck are they talking about?" laugh.

What were we talking about?

Bryan's way-fab shirt, that's what. He had it tailored while in Korea. But he wouldn't take his jacket off up front. This is one way Bryan and I are different from each other.

He did remove it after returning to our table, and so James and I were vindicated for shouting out in the first place. If you ask me, Bryan may have won the award, but he missed his moment for fame.

But here was the highlight of my evening:

That Friday afternoon, I was talking with my friend, Mike, who mentioned that he'd seen a made-for-TV movie recently about the man who invented/developed Herceptin. This is the protein therapy, you may recall, that has single-drug-edly raised the survival rate of patients with this particular breast cancer from 23% to 83%.

We talked for a bit about medical research, and how humbled I am by it, especially by all the women who participated in the clinical trials that led to Herceptin becoming standard treatment. What a gift to me. From people I don't even know and can't even thank. Then our conversation moved along to the business at hand.

A few hours later, there I was, at the Air Force Academy, chatting with a couple during the

mingle time. They were Filipino Americans, and I mention this because, to my knowledge, only a Filipino woman would think to wear the following piece of jewelry at a formal military awards dinner: A giant, pink rhinestone studded ribbon pendant on a multi-colored rhinestone chain.

I said to her, "I notice your pendant."

She said back to me, "I am a survivor!"

I said, "I am on my way to becoming one myself." And with that, she launched into her war story, which focused mostly on her reconstruction surgery.

Then her husband mentioned, "She was part of the Herceptin trial, and now it is standard treatment."

The tears welled up. I couldn't believe it. Just couldn't. I hugged her and said, "Thank you, thank you for being part of that trial, I've always wanted to be able to thank the women who helped me this way."

What a gift to have met her. And the timing of it! God just doesn't stop.

And, hey, let's also hear it for giant, rhinestone studded pink ribbon pendants.

Prayer Request

2010-01-07T20:29:00.002-07:00

It seems that lymphedema has started in my arm. This is the collection of lymph in the limb when you have no lymph nodes to pump it out. Radiation triggers it 30% of the time and it seems I'm again in the minority.

But it is very slight right now. Possibly even "pre-clinical." At this early point, it's possible to reverse it back to normal. My appointment at the lymphedema clinic is on Tuesday, which will be 12 days after it started. I'm hoping that is soon enough for reversal. Hence the prayer request.

Please pray that the therapist will be able to rid my right arm of the lymph and that it would be back to normal.

Radiation Update

2010-01-07T19:49:00.003-07:00

12 treatments to go. Notes from thus far:

My cubicle in the radiation wing is marked "AP 12/7." It holds my gown.

There are a few other cubicles that are marked as well. 4 others, now. 1 that is marked 12/3 and 3 that have dates starting after my own. There used to be 6, but I've outlasted 2 so far.

"Outlasted," because it's become a little game I'm playing. Each day I discovered another gown gone, I had one of those "Yess!" arm pumping victory moments.

Am I crazy? Because, you know, what a victory that I have to do 7 weeks of radiation.

Yet you all want me to keep you posted, don't you? How many of these 4 can I outlast?

Every 5th day, the techs take x-rays as well as dispense treatment. There is a glass plate they slide in that is marked with a "Y" and "Z" axis, a cross right in the middle of the field.

The "Y" is the horizontal axis, and the positive is on the left while the negative is marked on the right. But. OK. From the camera's point of view, the negative is on the left and the positive is on the right.

On the "Z" axis--the vertical--the positive is marked on the bottom and the negative is marked on the top.

What?

There can't be a good reason for this. Yet there must be. I asked the tech and she didn't know. Every fifth day, it drives me a little more crazy.

Speaking of techs, how does this story make you feel:

The procedure for treatment begins with the set up. I lie down, assume the position of hands above head, and the techs slide me around on the table a bit here and there until the lasers are lined up with my tattoos.

Then one goes to a computer monitor and calls out 2 numbers, one for moving me to the side, and one for moving me down.

I kept forgetting to listen to the numbers and memorize them for the next day, but after several treatments, I was pretty sure they were different numbers each day.

But why would this be? If I'm lined up with my tattoos, and the lasers are at fixed points and my tattoos are fixed points, then shouldn't I be moved--while already on the table--in relation to the machine the same distance each and every time?

I asked the tech.

She said, yes, they were different numbers that get called out, and it was to make sure I was in the same spot each time.

I asked her how this could be possible. Just as I explained it to all of you. She said, "In a perfect world, yes, but we have to be absolutely precise."

What?

"It's all complicated science."

What??

I'm not concerned that the beam isn't hitting the right spot. I have complete confidence that I'm being radiated accurately each and every time.

But this doesn't make sense. Lasers, tattoos, precision machine. . . I should be moved the same distance and direction each time.

I had to let it go. The whole matter. I had to stop thinking about it.

Then, this week, I made the effort to listen to and memorize my numbers. And you know what? They are the same every time.

Now. This tech. Very nice woman. But how would you feel if it were you on the table and she with her finger on the button?

Speaking of feelings, I can finally tell you a very disturbing story from two weeks ago. I have to. Leaving it out would be to permit an incomplete record.

Dr. Tanner was on vacation. I knew there was to be a substitute there that Wednesday, the day that patients meet with a doctor.

So I was quick on the uptake when, Wednesday morning, I lay on the slab, in the position, when this guy walks into the treatment room.

And he made some kind of joke. Something not memorable. He looked at me, at my face. Didn't say a word.

So I said, "Who are you?????" And I probably sounded pretty disturbed.

He said, "Just some guy off the street."

And then the tech made some joke about how, sure, they let just anyone walk in.

So I said, "You should not be making light of this. And I still don't know who you are."

Folks, I was "in the position" already. Naked. Lying there. Looking at a man who hadn't bothered to tell me that he was Doctor so-and-so. I just closed my eyes. Closed them before they went blind with white rage and I started saying things unbecoming.

Then he said, "Oh dear, I've embarrassed the poor woman."

This part looks bad in print. But he said it with genuine regret. And then started saying other stuff--you know how when you really step in it, and you just keep talking, and every additional thing you say only makes matters worse? That was this guy.

The problem was not embarrassment. In his little post-stepping-in-it rant, he mentioned how medical professionals don't get embarrassed about anything--e.g. naked bodies are no big deal to him. The problem was his profound disrespect for my dignity.

What a jackass. That's pretty much the nicest term I can come up with.

And my opinion didn't really change during or following my appointment with him after the treatment. He apologized again in that room, where I was dressed. And told me to 'Drive safely, Girl' -- but he was an old jackass, so I didn't take the remark to be condescension so much as it was just more jackassery.

I got home that morning and cried and cried about it as I told Bryan.

There were those few minutes during treatment, when I was alone, on the slab, following the incident yet preceding the appointment I knew I had to have with this jackass. What would I say? He was guilty of unprofessionalism, yes, of a poor bedside manner, yes. But he hadn't meant to be hurtful.

Yet, I knew there was a huge possibility I would just rip into him. It was about to be a moment very unbecoming of Christ, I knew, I could see. So I prayed right then.

And the Holy Spirit answered: Jesus knows what it feels like to have one's dignity assaulted--and He at the hands of people who really did mean to be hurtful. And it was a small price to pay compared to the salvation it bought for those He loves. You can forgive this guy, Amy. For the glory of Jesus, you can count this a small price.

Scribbles and Notes

2010-01-02T16:30:00.002-07:00

1. There is a picture on the left of Gemma and me, dressed up before going to the theater. This was on 23 December, when we went with our friends to Denver for a matinee of Little House on the Prairie, the musical.

The day itself was a delight. We stopped on our way up for lunch and spent twice as long on the drive home due to traffic and bad weather, but the company in our car was good.

As for the musical, it was also a delight. The stagecraft was very imaginative, as it would have to be because half of the relevant material included horses, crops burning and treacherous journeys through snow. Melissa Gilbert, the actress who played Laura in the TV series, played Ma Ingalls in the stage production. Though it pains me to say it, she was pretty terrible.

When she made her first entrance, she got a huge round of applause. OK. That's cool. A lot of fans in the audience. But at her curtain all, she got a massive, standing ovation. People! Applause after performance is supposed to be directly related to the performance! Were you not watching?

My other critique is of the script. Gemma and I finished reading all the Little House books just this past summer. (This was my first time reading them, too, and I was so impressed by them. These are books for adults as much as children. . . ) So it is fresh in my mind how God-fearing the Ingalls family was. All the books are permeated with prayers, hymns and, at times, theological discussions.

In this musical, there was no inclusion of this faith. No mention of God at all, really, except for one exasperating moment: In the books, when Mary becomes blind, she speaks with great love for God, and no blame. In the musical, not only does Mary not have this reflection, but Pa curses God for her blindness!

GASP.

Pa would never say something like that. . .

And I don't really understand the script-writer's choice in these matters.

2. I brought the list of peculiar doctor names to Dr. Tanner on Wednesday. A mental list, not a printed one. Thank you to Sister #2, my Mom, Ben and Amanda who played along. I was pretty excited to spring some on him.

Here was his reaction: to Payne, Scream, Luc, and Clutts--practically nothing. Just a mild look of bemusement and the thought across his face of, "Why is this woman still on the topic?"

Then I mentioned the OB named Dr. Hymen and he laughed out loud.

Then I said, "There were a few others, but it would make me blush to repeat them," and a different look crossed his face. Something like, "Who blushes about anything anymore?"

From there, we chatted about other things. It's become a little game for me: How irrelevant can I make my comments before he ends the appointment? Or maybe he figures he needs to sit there for 10 minutes in order to bill in good conscience, so he'll talk about anything.

3. I had an appointment with Mayfield on Monday! How fun is that? Bryan and I went together, then did lunch and a movie, and then I went to radiation while the kids were with Betsy for the day. I enjoyed Monday more than Christmas itself.

Why did I need to see Mayfield?

Oh. Well. I'd called his office to get a referral for a surgical consult in the coming months so I could learn more about my surgical options. Mayfield had me schedule an appointment with him instead of just signing off on a referral.

I told Bryan, "I know what he's going to say. He's going to say 'Wait, slow down, give yourself several months before surgery. . .'"

And it's not that I'm in a hurry, it's just that as long as I'm clicking along with a disrupted routine and various treatments, I might as well keep right on clicking, right?

Turns out that's not what he wanted to say. He thinks clicking along is a good idea. There were just other clarifications to be made about what surgery could happen where and he wanted to talk about them in person so he could see us again, and see for himself how I was doing.

It felt like seeing an old friend, so Bryan and I didn't mind going down there one bit.

And the movie we saw was Sherlock Holmes. Such a good movie. Such a good day all around.

And as for A?

2010-01-01T11:04:00.003-07:00

What did A's husband get her for Christmas?

Back when Gemma came along, Bryan gave me a charm bracelet, and he's faithfully been adding charms to it. Each one is a well-considered symbol.

Some are obvious: A teddy bear for when Gemma was born.

Some are cute: A bison for when we lived in Kansas.

Some have long stories behind them: A Korean pipe as a symbol for how much fun we have together. (That's not supposed to make sense to you because I haven't told you the long story.)

Some are poetic: A pitcher, because I "pour out my life for Bryan and the kids."

And some are sweet: A Korean palace gate. For, in Seoul, there remain the 4 massive gates of a palace long since gone to ruins, and at each gate, there is a huge market. When I saw the charm, I asked, "Is this a symbol of how much shopping I've done here?"

He said, "No, I gave it to you because you're my queen."

This Christmas, the charm was. . .can you guess?

A hat.

And I thought that was great all by itself. But then came the accompanying explanation:

Because one day, I will wear a hat only when I want to.

B, G and J Day: Christmas Edition

2010-01-01T10:27:00.003-07:00

I have been alerted by Sister #2 that my post for Wednesday didn't actually post. I'm mystified. Operator error, no doubt. But what error, exactly?

Annoying, friends. Because it was a really great post that I don't have another copy of. Now I'm left to reconstruct it. But if T. E. Lawrence can re-write his 500 page memoir from scratch after the original was lost a train station, then I can re-write this one post. Because that's the kind of serious blogger I am.

B:

B's wife got him a terrific Christmas present:

A Nerf N-Strike Rapid Fire AS-20 Dart Blaster that Shoots 20 Darts with Automatic Fire

Gemma and Josh already had nerf guns. They were the great enticement for Joshua to commit to using the toilet.

(e.g. "Josh, if you get 10 X's in a row on your poop chart, you get your grand prize!" That 10th poop happened while at church, and as soon as his pants were pulled up, he announced--to anyone he met--"I pooped, so I get a gun!")

Gemma got a gun, too, because our policy is that you cannot shoot at someone who is not armed. But in the weeks between The 10th Poop and Christmas, the war was really between Josh and Bryan, with Bryan saying often, as he loaded up Gemma's 6-shooter, "Joshua, go get your gun!"

This Christmas morning, Bryan was grinning as he loaded up his 20-shooter. "Joshua, go get your gun!"

Well. Gemma got hers, too. And I got mine. Oh yes, Mommy gave Mommy a present this year: my own 6-shooter. We had a family gun battle on Christmas morning.

G:

A Christmas morning that started a lot later than yours, I am guessing. Because, I guess again, you did not spend the wee hours of your Christmas morning in the ER and/or scrubbing blood out of your carpet.

What's this?

Gemma rolled out of bed at 12:30 AM, climbed back in, and then noticed through her stupor that there was blood on her pillow.

She screamed that panic scream, which woke me, and then raced to our room to tell me she had a bloody nose.

As you would have, I leaped out of bed to rush her to the bathroom. Maybe you'd have done it out of parental concern. I did it out of blood-on-the-rug concern and found that it was not a nose bleed. Instead, there was a gash across her chin, below her lip, and it was gushing.

While Bryan got dressed for the trip to the ER, I explained to her why she had to go, and what would happen there. Her eyes were wide, forehead creased--she was all dread. A dread I knew well and I figured that 6 years old was not to young to know: There are somethings we don't want to do, but that we just have to do. Things that aren't like trying a new food we think we will hate and then are surprised by how much we like it. But things we think are going to suck and then, yes, they do indeed suck.

I think her ER experience did suck. Bryan reported that as soon as the nurse said, "We're all done here," Gemma hopped off the bed and started putting on her shoes, wasting no time to high-tail it out.

But I don't think it sucked as much as she'd dreaded it would. They used a numbing agent, so the 6 sutures were tolerable. And they have her a little stuffed bear, her 'Hospital Teddy,' which she took to heart.

From Bryan's point of view, it was a great visit because they got in right away and out soon after.

We examined her bed and still don't understand what she could have hit her chin on. But we've put up a sleeping gate, which she'll probably want to use through high school, perhaps even bring to college with her. . .

At 4 AM that night, everyone was home and back in bed, Gemma in ours. I asked her, "When you fell out of bed, did you think, 'My chin hurts a little'?" It was amazing to me that she had thought it was just a bloody nose.

She said, "No, Mommy. When I fell out and then got back into bed, my chin felt just like every other person's chin that was not wounded and bleeding like mine."

J:

Joshua slept well that night. But he was very concerned to see his sister's bandaged chin, and to hear about a trip to the hospital. He even offered his doggers to her for comfort.

Then, later, he shot her full of nerf darts.

2009-12-30T05:00:00.001-07:00

'Tis the Season

2009-12-28T20:26:00.002-07:00

Permit a tardy Deep Christmas Thought:

One of the primary lessons I've learned through the military life of moving around, changing jobs, changing churches, changing ministries, changing roles, changing changing changing--one of the lessons of this is that life happens in seasons.

For instance, our normal Ponce Family Policy is that the children don't watch many movies throughout the week. (We don't have television, so it's easy to count just how much DVD time they get.)

Then I did chemotherapy and suddenly we were in a new season: A time whence Gemma and Josh got out of bed, got their own breakfast and put a movie in to watch until Mommy managed to get out of bed herself.

I have been thinking about Mary's seasons of motherhood. It must have been a hard adjustment for her when baby #2 came along and was a sinner, unlike his big Brother. . .

But in general, that time between His birth and His public ministry starting about 30 years later must have been a joyful season. Not without its trials and difficulties (she did, probably, lose her husband at some point). Not without its similarities to the work of all mothers everywhere. But also, not without its joys at seeing such a marvelous Boy grow to manhood.

Then came that dark day. And a dark 3 days following. Throughout these, we should always remember, those who loved Jesus had no hope at all that they would ever see Him again before they themselves died. They had no expectation that He would resurrect. They had only their grief and dispair and whatever other ache their hearts held.

Multiplied by a hundred in the case of His mother, I would expect.

Then He appeared. And everything changed forever.

This Christmas, I was thinking about how Mary knew a joyful season of motherhood, and only after that crucible of grief--indeed, only out of its event--came a new and glorious season.

This is what the living Savior does. He makes the season new. He turns a dark hour into a dawn.

My own marathon proceeds. A lot of radiation left. Then surgery. And though I'd expected to be of very light heart by this time--the worst is behind us, no?--there's more sadness now than ever before. Even so, I know this is just a season.

And I do sense that there is something glorious ahead. The darker this season seems to me, the brighter, I believe, will be His triumph.

Radiation Update

2009-12-22T19:50:00.002-07:00

BTW,

Three pieces of good news to report:

1. While I still get a touch nauseous from treatments, it's milder than before and I don't need to medicate for it.

2. The standard reaction is for the skin to burn red first, then turn into a tan. I had some itchiness, but mostly, the skin is going straight to a tan. A little weird, I admit, to be tanned by radiation, but I'm thankful I'm not suffering a skin burn right now.

3. So far, no lymphedema has been triggered in my arm, which happens about a quarter of the time during radiation. Please keep praying that side effect would be warded off now and forever! (I met a woman in the chemo barn whose lymphedema was triggered 12 years into remission. . .)

The New Name Game

2009-12-22T19:41:00.003-07:00

Well, well, well.

My oncologist's name triggered the original Name Game, whence we identified over 200 male names used in popular music.

Perhaps my radiologist's name has triggered another past time for us. I asked if you knew any doctors' names that were oddly appropriate/inappropriate/ironic or otherwise apt. And a few of you have already ponied up.

One of you, in fact, Ben of Germany, gave us two names, which is a 200% increase over his contribution to our first Name Game.

That is, he told us of a German dentist whose name is a homonym for the German word that translates into "scream." Hence: Dr. Scream.

And there was also the doctor who was instrumental in saving his life (following appendicitis, if I remember his mother's story correctly), Dr. Luc, pronounced "Luck."

Not that it was "luck" that did the saving.

Sister #2 gave us a Dr. Clutts, surgeon extraordinaire who managed to botch a vasectomy. A mistake that became clear only after a child was sired. This is particularly amazing to me. . . I mean, how much is going on down there that something can be cut, and yet have no detectable effect?

She also gave us Dr. Awesome, from Milwaukee, whose name at least sounds that way, and who makes the name oddly appropriate because, if we are to believer her testimony, he was a good-looking guy.

So:
(Listed by phonetic spelling if different from actual spelling)
1. Dr. Scream
2. Dr. Luck
3. Dr. Clutts
4. Dr. Awesome

I cannot wait to bring these into Dr. Tanner. I'd love a list of, say, 20. It could be your Christmas gift to me. . .

Another Big Reveal

2009-12-19T13:29:00.003-07:00

I've been calling him Dr. X-Ray.

This is because I wasn't sure if I'd end up liking him, given that accessibility blip from the first week. And I didn't want to disparage someone's real name. "____ Who Shall Remain Nameless" has already been used here.

But I know for sure that I like him now. We had our Wednesday appointment, and in doctor-patient terms, the only thing we talked about is that I don't yet have a skin reaction. (Thank You, God.) A reaction in the second week is usually bad news for the remainder of treatment, because the skin just gets worse. What's typical is that late 3rd or early 4th week, a slight burn shows up, and that this turns to a tan.

As we had nothing medical beyond this to discuss, we just chatted for about 15 minutes. I got the impression he wouldn't have minded staying there for another hour.

What did we talk about? My probing questions for him:

"Why did you become a radiology in oncology? Isn't this kind of sad work to be drawn to?"

Answer:

He likes the technology of it. He'd been an engineer for IBM before med school, and decided he didn't want to do that for the rest of his life and "Be such a nerd," pause, bashful dip of the head, "Of course, I'm still kind of a nerd."

And this isn't really the same kind of oncology as doctors like Markus sign up for. Dr. X-Ray's "really just a consultant for those guys"--gestured to other half of the cancer center--"I see patients for a short time, usually after they're already well into treatment. They're done with me before they go back to the other side and then really decline--" he looked up, as though remembering his bedside manner, and said, "Of course, you'll be fine."

Then he told the story of when he worked in Hinsdale, and he referred a 12 year old girl (who lived nearby) with a brain tumor down to Children's in Chicago. They saw her and then sent her back to Dr. X-Ray. He told them he didn't want to treat her, he wasn't a pediatric radiologist, she should be with specialists.

They told him she wasn't going to make it, but she might be able to get 6 more months, and it would be a shame if she had to spend them commuting 80 miles round trip every day for radiation. So he treated her. She made it for 3 more months. And he said then that he never wanted another case like this.

"But she did make it to Disneyworld, or Hawaii or somewhere. . .one of those Make a Wish trips." He went on to say that he now tells terminal patients who are thinking of taking a trip somewhere to "Go now, not later."

So. He's tasted this sadness before and wants no more of it. I don't blame him one bit. But it makes the Drs. like Markus shine as that much more heroic, doesn't it?

I asked Dr. X-Ray if he believes, as posters all over the cancer center and billboards all over Colorado proclaim, that "Love Heals." (That is, this is the Rocky Mountain Cancer Center's ad campaign that is quite ubiquitous: Love Heals.)

He shrugged and said, "Sure. There are studies that show terminal people will die just after a big even like a graduation or wedding and not right before." It says something when a person responds to a "what do you believe?" question with a citation of a scientific study.

Finally, I asked him a probing question when he first entered the room. The first question, reported here last of all:

"So, Dr. Tanner," because that is his name, "Do patients often comment on the appropriateness of your name?"

He laughed as though this was the first time he's heard the suggestion. No, they don't. But he's heard of other doctors with either ironic or oddly appropriate names. Right in that moment, he couldn't think of one.

And neither could I.

Isn't that annoying? When you know you've heard examples of a thing, but cannot recall them for the right moment?

I'd like to go back to him in 2 weeks (because Dr. Tanner will be working on his own tan on vacation next week) with a bunch of examples for him.

And I'm sure you know of some. . .

B, G and J Day: GingerDucks!

2009-12-17T22:04:00.005-07:00

B:

In general, men have a much harder time than women hearing about and talking about my cancer. Lots of reasons for this. I suspect it would not be so if my cancer were in a body part that they have, too, for instance.

But I also suspect it's because a man personalizes it by wondering, "What if that were my wife?" And the thought scares the crap out him. Not just because of the body part involved, but because he recognizes as we all do that cancer is not an outside invader that can be dispatched with a home defense weapon.

He sees that there's practically nothing he can do to save his wife's life. This kind of helplessness, or even the possibility of it, rattles men.

Here's the good news for these men regarding the body part issue, if we were to gauge from Bryan's experience: When you are told that your wife is going to lose her breasts, the very last thing you care about is whether your wife will have breasts a year into the future. The only thing you care about is that your wife is alive one year, and many years, into the future.

Truly. It's amazing how unimportant breasts become.

As for the bigger concern, the helpless-in-the-face-of-a-killer concern, it's difficult. The part Bryan hated the most was seeing the styes in my eyes after each round of chemo because they looked so painful. The styes and all the rest of it--all just a crappy physical experience for me that he couldn't spare me from. He really hated it.

Which brings me to my homeschool co-op Christmas party this past Wednesday. I hosted it, taught a poetry lesson, and then we all decorated gingerbread train.

Gingerbread trains? Oh yes. One engine for each family (7 of them), and one open box car for each child (16 of those). Gingerbread pieces that were designed and baked by Bryan himself.

For a whole week, he was a gingerbread fool. He made 12 batches of dough. Rolled and cut and baked and trimmed and bagged and then started rolling again.

The night before, I made the icing and assembled the trains, which was a 4 hour job in all. Nothing compared to the 20 hours he spent on the baking.

Why would we do this? I did it because
a) I love a good party
b) I love decorate gingerbread structures
c) I love to see children decorate gingerbread structures
d) I love the women in my co-op and so enjoy talking with them and
e) I LOVE when our house is filled with people and we actually use all these square feet of shelter.

Normally, the living we do could happen comfortably in half the space we own. But at a gingerbread train decorating party, with 23 people present and a project going full-blast, we use a lot of space.

And he did it because of points a through e.

A terrific time was had by all. And all helped clean up such that my house was in better shape than when the crowd arrived. I did have to take a 2 hour nap after everyone left, but it was a good kind of exhaustion.

We collapsed into bed on Tuesday night, after the last of the baking and assembly, with the party ahead of me, and Bryan, for the first time since June, looked. . . satisfied. Peaceful. Un-Anxious.

"Well, Babe," I said to him, "You couldn't go through my chemotherapy, but you could bake a crapload of gingerbread for me!"

He smiled the smile that says I got it exactly right.

G:

Gemma made something for Bryan's birthday last week, a set of 4 stars, 2 big, 2 small, all glued together by their side points. She drew smiling faces on them. Star people!

"This one's Daddy, this one's you, this one's me and this one's Josh!" she explained to me before wrapping it up.

I said, "But my star doesn't have any hair drawn on top like the others."

Gemma leaned in close and said, as though she were breaking bad news, "That's because you're bald."

Yes. 7 weeks after the last round of chemo went in: still bald. I'll keep you posted on the hairfront.

J:

He's reached that amazing stage of verbal acquisition and explosion. He's now doing more than just communicating the concrete and the basics. For instance:

Last night he said from the stairs, at a time when he should have been in bed, "Mommy, I have to whisper you a question."

I recognized this as a ploy to get downstairs where he'd probably ask for gingerbread or candy and said, "You can ask me from right there. You don't need to whisper it."

"But I want to whisper it."

"No. Just say it out loud. Right there."

"But I want to whisper it!"

"Joshua, either ask me right now or go back to bed."

"Well now I can't find it."

"You 'can't find' your question?"

"No, I lost it. Now I'm looking for it."

Another example:

We needed to leave the house by 8:40 today and though I'd asked Josh to get his shoes on a few times, he was still dawdling.

I finally said, sternly, loudly, though it was not yelling, "Get your shoes on now!"

"Whoah," he said, "That was a huge voice!"

This made me laugh. And he did, finally, get his shoes on.

The Art of Radiation

2009-12-12T21:10:00.003-07:00

Sun Tsu has written a few pieces of advice. I didn't heed them because he was writing on the art of war, and, as I've explained before, I have a hard time thinking of the cancer thing as a battle.

Sun Tsu's recommendation is that one should not underestimate one's enemy.

I underestimated radiation. I had my eye on the end-of-chemo-date as the prize, thinking that the next Big Thing in cancer treatment would not be much of a big thing at all. I thought it'd be a breeze.

Turns out that a "breeze" in the middle of December in Colorado is pretty uncomfortable. It would have been better if I went into radiation expecting a nightmare. Just think of how pleasantly surprised I'd have been!

So the Mayfield sympathizers among you are thinking, "See, Amy? You would have done well to be a little more martial in your approach. The war metaphor would have served you effectively here."

But is radiation really my enemy? No, no. It's my friend. At least, my enemy is cancer (this much we agree on) and the enemy of cancer is radiation, and Sun Tsu did say that the enemy of my enemy is my friend.

I'm pretty sure he didn't have anything to say about under or over estimation of a friend's ability to burn out living tissue by means of relentless application.

So, again, we find the military metaphor coming up short.

In any case, I am over the shock of the realities of radiation. 1 week down, 6 weeks to go.

That first week was also accompanied by a snow storm and single-digit temperatures, all of which does not impress my Chicagoland readers as being all that terrible, but I have gone soft, friends. And it was miserable to drive in. And, don't forget, I'm also bald, which turns all things "cold" into things that are "awful damn cold."

But the sun came out today! We reached mid-50's! The snow is melted from the streets and I can look forward to my commute to the cancer center as 40 minutes of me-time.

I even checked out a book on CD for my own edification. Titled Manhunt, it's the story of the 12 day search for John Wilkes Boothe. Educational, interesting and yet completely irrelevant to my actual life. It's the trifecta of reading material.

So, then, just a few remarks to follow up on what I've reported from the first week:

1. I asked about the hole in the ceiling panel. Shared my observation that it didn't look very official. The tech--and they are all very nice women, these techs who zap me--shrugged and said, "We just needed a hole."

Then the other pointed out that the two side laser machines were housed in cabinets, the doors of which had been carved through as well. "It makes it so much nicer in here!" she said, meaning that it was "nicer" for these two machines to be covered instead of exposed.

I gestured at the enormous radiation machined in the middle of the room with the movable slab below it and said, "Yeah, those cabinets really make a difference. . ."

2. I offered to bring them a pack of washable markers. "I could get 8 of them for you for a mere 3 bucks! My treat!"

But, no. They have to use FDA approved surgical markers that cost $8 a piece and can only be used on one patient (that I understand). They write the patient's name on her marker and then stick it into a specially-designed marker-holder that, I'm guessing, cost about a hundred bucks.

3. Side effects: I have the expected ones. . . fatigue in that arm, a soreness in the treated area. But it's a soreness that feels like a lactic acid burn that comes after working out an un-worked muscle, so it's not too bad. And I stretch often.

The unexpected effect: nausea.

Following the first treatment, I felt yucky throughout the day and it built up until, by 6PM, I was very close to throwing up. Dr. X-Ray hadn't given me a number to call after hours, so I called Dr. Science, who, again, was completely generous with his time as I started out with, "So sorry to disturb you. . ."

I was to take the same medications I took to control the nausea from chemo. I did, and they worked.

Tuesday I felt fine. Wed through Fri, I took the meds again.

I find it all pretty disappointing, as I was really liking not being on any medications. But. Well. We'll see. . . I will try on Monday to go without, and see just how bad it actually gets.

I mentioned all this to Dr. X-Ray on Wednesday, of course. And asked, "Are you sure they are pointing that thing at the right place?"

He said, "I hope so." And then explained that the beam follows the light, and that the techs see the light on the closed-circuit TV. So they'd know if it was pointed at my stomach.

Turns out some people are just very sensitive to radiation, and I'm one of them. Not too surprising, because I get nauseous very easily. I can't even watch my kids jump on a trampoline without needing to toss the ole cookies.

4. Speaking of Dr. X-Ray. . . After having to call Dr. Science on Monday night, I went in to the Radiation dept on Tuesday in search of their after-hours-call number. I asked the RN who works in a booth right inside the department's door. I explained what had happened. In the future, what number should I call?

She asked, "When did you need to call?"

I said, "6 PM."

"Oh," said the nurse-in-a-booth, "That's after hours."

"Yeah," I said.

"Dr. X-Ray doesn't give out his number for outside office hours."

"Well," I said, "Shame on him."

She looked back at me with big eyes. This was an exciting development in her day.

I went on, "My surgeon gave me his number when I was in his care. My oncologist gave me his number. Seems to me that my radiologist should give me his. I'm in his care, am I not?"

Her eyes were still big. "People just call their oncologist if they have a problem."

Well. Fine. These guys are part of the same practice, and if that's their deal, fine. But mark my words: I'm going to mention this to Dr. Science.

You're thinking, "Mention it to Dr. X-Ray, too! I dare you!"

And I was going to. But then he walked in on Wednesday and we got down to the important business of the day--e.g. pictures of Amy! decapitated--and. . . I just like him a lot. He's very down to earth. Easy going. I didn't have the heart to read him a riot act about accessibility. It's not like it's a problem to call Dr. Science, after all.

Maybe I bring up the subject before the 7 weeks are up. As I tell you all about it, I realize that I'm pretty curious to know what he'd say. I've got just 6 weeks to find out. . .

Radiation

2009-12-10T13:29:00.004-07:00

4 treatments down. 31 to go.

This is why I haven't been in a big hurry to describe the process of radiation. What? Am I going to forget what treatment #1 is like? No problem. It was the same as treatment #18 or #23 or #31 will be.

But first, there were "work ups." Two different appointments in which a bunch of medical folks did a bunch of stuff that would be used to treat me in the right place at the right strength. At the time, I didn't know too much beyond the term "stuff," either. Bryan asked me, after the first appointment, "What did they do, exactly?" and I said, "Come to think of it. . .I don't know."

This is because these medical folks whisked me to and fro. Go in there and change. Come out here for me to take your photo to put on your file. Go in there for the "simulation" (simulation?). Lie down on that table. . .

And then this part happened slowly for me: the gown came off in a freezing cold room and I was shaking all over from the cold, which is not permitted for whatever "simulation" they'd be doing.

So the nurse--at least she claimed to be a nurse, but you be the judge from the following anecdote--put a warmed blanket on me and they waited for me to stop shaking.

During this wait, she commented, "You're a young person."

"Yep." And in the silence, I got to thinking of the advantage to this in the cancer center. The techs are always able to pick me out of the crowd waiting in the lobby or the barn as they know from my file that I'm 34 years old and they can see with their own eyes that there's only one woman sitting there who's under age 50.

"Hmm," the "nurse" went on. This "nurse," who was the very one to take my gown off. . .

"What kind of cancer do you have?"

I thought: Please tell me that you're only responsible for making coffee. And I looked at her with great panic.

Then the "simulation" guy came back in and got down to business. In retrospect, it's possible--I hope!--that this "nurse" meant, "Which kind of breast cancer do you have?" In which case, I might have said, "What difference does it make?"

The blanket came down and I was told to hold onto two handle bars above my head. Half-naked. Thoroughly cold. Gripping bars. Various people in the room who's function--and intelligence--is questionable to me. Just another humiliating moment in a year so far quite full of them.

And these medical folks, for as nice and professional and kind as they were, tottered about their business as they do all day, all week, all year long. When you're running a simulation, it turns out, you're really just mapping out whatever body happens to be lying on the slab.

After the scan, the "nurse" put big marks on my belly and each side of my ribs. Then, within these marks, she tattooed me. 3 little marks, each the size of a big freckle, but with black ink, so they don't look like freckles. They look like big ink dots.

The first one, on my belly, hardly hurt. That's because the nerve connecting that skin to my brain was severed during my surgery. Same with the dot on my right.

Then she did the dot on my left and I yelped from the pain--like a dog whose tail gets stepped on. It was exactly that noise. One dot! Owie owie owie!!!

Who submits to a series of these painful dots in order to get a full-blown tattoo? It really, really hurts!

The second work-up appointment happened on the table that's actually used to administer the radiation. Two techs worked together to take various x-rays of me. The machine hovered and swung around me much as the one in the dentist's office does, only this was was huge and the techs left the room and operated it by remote.

The part of the machine that actually fires the radiation, in various forms, does so through a glass plate. In it, I could see my reflection when it was stationed right above me. Huh. I'd never seen myself from that angle before, let alone while being naked. Then the light show began.

Green laser lights shone from various directions, demarcating the section of my body that would be treated. I could see them shining on me, gerrymandering my chest arm and neck into tidy portions. I felt like I was in the beginning of a production of the 6 Billion Dollar Woman whence high-tech gadgetry would perfect the bionic creature on the table.

The tech later used a marker to draw along these very lines so they could take a digital photo for the file. She said, "It's OK to wash all this off."

"OK," yes. But not possible, it seems. 7 days and 7 showers later, the marker is still there.

But the following was the most surprising part of the day: That machine moved out of my line of site and then I was staring up at the ceiling in the darkened room as the x-rays continued. And lo! There was a gadget above the ceiling, some kind of important equipment--perhaps even a source of one of the laser beams--shining down through a neat "X" that had been carved out of the ceiling panel.

But don't picture a panel that was specifically made for this radiation room. No. It was a regular floating ceiling, the kind that movie characters fall through when they're trying to escape by climbing out through the ventilation screens, and it looked like the "X" had been cut by a janitor armed with a saws-awl.

I mean, fine. If that's what gets the job done, OK. The equipment working all right? Good.

But in a country where the FDA requires surgeons to use a $100 crochet hook for a varicose vein procedure instead of a $1.50 crochet hook from Wal-Mart, I was kind of surprised that the radiation room wasn't simply built with a higher ceiling.

It's not like the lower ceiling was helping to keep the room heated.

(BTW--the crochet hook thing is something Mayfield told me about. But I don't remember if I mentioned it here already.)

And then, Monday, radiation began. This is the routine, to be repeated 5 days a week for 7 weeks:

I arrive, go straight back to the radiation department instead of checking in with the Center's secretaries, pull out a key card from a small, plastic organizer, and then zap it under one of those. . . zapper things.

Then I get changed into a gown.

Within minutes, the techs, alerted to my presence from my key card zap, take me back to the radiation room. I lie on the table. Gown comes down. Arms up to the handle bars. Head turned to the left. They put a rubber band on my feet to keep my legs from shifting during treatment. (This, I recommend, is very comfortable if you sleep on your back.) I lie on a sheet on the table so they can use the sheet to slide me a bit this way or that in order to make my 3 tattoos line up the same place each time.

Then they leave the room and the lights go down and the machines start whirring and hovering and moving about. Every now and then a signal beeps loudly and this means the waves are sent forth.

They say you can't feel it.

I think I feel it. That first day, especially. It felt like a deep, deep quivering in my muscle. I think, anyway. Because of the beep, I know when it's happening, so there's no telling what I've imagined.

After about 3 minutes, it's over with. I get dressed. That first day, they put my initials on a piece of tape and stuck it to a cubby hole in the changing room. I'm to stow my gown there instead of using a new one each day. And this was, up to that moment in my radiation experience, probably the most depressing condition for me to think about.

Who wants to have her own cubby in a radiation unit?

But it got worse.

On Wednesdays, patients see Dr. X-Ray after treatment to discuss any concerns or side effects. This was my first time seeing him following the "simulation," and at long last, he showed me what that procedure was all about and what my treatment would be.

He brought up a series of images produced by that CAT scan. These images were murky to me--various forms in various shades of gray or black, and though he explained which angles they reflect, I was never very good at those spacial reasoning questions that ask you to assemble shapes in your head. That is, I had no idea, really, what he was showing me. Kind of like when I saw the ultra-sounds of my babies in the early months. "That's a heart? OK. I believe you" and instead of worrying about it, I got lost in the wonder of it.

This time, it was more like, "Those are lungs? We're sure we aren't frying them, right?"

Then Dr. X-Ray said, "Oh, here we go--" and brought up a final image for me.

Following all the nakedness in cold rooms, and handle bars to grip, and lying on a slab and seeing myself sliced up by green beams and then drawn on with marker that doesn't wash off and having my own personal space reserved in the radiation dressing room, I looked at this image:

It was of my body with peach-tone skin computer-painted on. One breast. One scar. The body ended right above my lips and, on the bottom of the picture, right above my belly button and there, where the body was cut off, I could see my organs and a little white core of my spine.

So.

Now I know what I look like decapitated. As sometimes happens to meat on a slab.

All of which could be taken to be a little sad. A real bummer, right? But I am sure to look at one other section in the radiation room each time I go in, which is once a day, 5 days a week for 7 weeks. This is the shelf that holds a dozen white mesh head masks, each one labeled for the patient it's been molded to.

And I'm reminded that the kind of cancer I have is, in fact, just breast cancer and that it has not, it seems, spread elsewhere.

Half Time Remarks: Part 3 of 3

2009-12-02T19:43:00.002-07:00

The Big "C"

It's time for the Big Reveal. If The Big "C" is not about cancer, then what is the Big "C"?

Well, cancer is a little "c." It's just a circumstance. It has posed some challenges. But it has also been the vehicle of great blessings--and I'm not even done with it yet.

The Big "C" is Christ, the Name above all names, the One who can make and keep cancer a little "c" in my life, in anyone's life.

Many have remarked in the comments, through e-mail, and in person upon "Amy's faith." Something along the lines of "It's so strong. . ."

I know that, universally, all of these comments are meant to encourage and support, and I do receive them gratefully as love. But now it's half-time, and I want to clarify something:

There is nothing about me that has created this faith, that is responsible for this faith, that should be admired for this faith.

There is nothing I know about God that you cannot know.
Nothing I experience with or in God that you cannot experience.

God loves you as much as God loves me, and His desire is for you to know and experience that love.

Some of you already know God and have a relationship with Him such that you've been able to relate to a lot of what I've written.

Some of you are simply not interested. You've got your reasons. Fine.

But some of you, I do believe, are interested. There's curiosity there. Maybe some wonder, some yearning. Maybe there's some pain that could really use the kindness of a Savior. This Half Time post is for you.

*********
The message is this:

God created a perfect world. Then sin entered the world through the sin of one man, and all of creation suffered the consequences. There's no point in being annoyed with that first man because we all know that if he hadn't messed it up, we would have. All fall short of the glory of God--we're all imperfect creatures walking around in an imperfect world.

The worst part about our fallen state is one that we're not even naturally aware of--that our sin interrupts our relationship with God. We can't have unity with a perfect God on this side of Heaven if we are imperfect, and we can't be unified with a perfect God on the other side, either, if we are imperfect.

Cut off from our Creator. Forever. The wage of sin is death, and you and I earn that wage every day.

But there is a free gift offered by God: eternal life through Jesus Christ.

How's that?

Way back, just moments after that first sin, God promised to send a Savior through Whom people could be restored to a relationship with God.

The Bible, among other things, is a series of stories of how God worked in people's lives to communicate His love, and these stories, again and again, presented symbols and pictures of the coming Savior.

God delivered His people out of Egypt, and the symbol He used was lamb's blood.

He gave a ritual law to His people in which He described what their yearly animal sacrifice should look like--to atone for their sins, they were to shed the blood of an innocent lamb. This was a symbol of what Jesus would become.

He spoke through His prophets with specific descriptions of who, what and where the Savior would be.

Then Jesus was born. He lived a quiet life until the age of about 30. He had a public ministry of preaching and miracle working for about 3 years. Then He was crucified by Roman decree and when He died, He completed an earthly life during which He had not sinned. He was that innocent lamb. He was buried in a tomb. Then His body resurrected from the grave and He appeared--to various women, then to His other friends, then to whole crowds of people.

And now there can be "eternal life through Jesus Christ." That is, if you believe that Jesus' death on the cross was the atoning sacrifice for your sins--that He paid the price for your sins with His death--and you believe that God resurrected Him from the dead, then God no longer sees you as an imperfect sinner.

Instead, God sees you as someone whose sins have all been covered, have all been paid for by Jesus' sacrifice. And you can have unity with Him--here on Earth, and after you die, in Heaven, too.

I write all this out because I don't want to assume that everyone knows the basic Christian Gospel. If you are one of those who is interested in the "God stuff," well, there it is. I hope I said enough to lay out the basic story, and I hope I have not said too much. . .

The best place for you to begin from here--for us all to begin, actually--is with 2 steps.

1. Talk to God. The only prayers He listens to are the honest ones. So if your prayer starts with, "I don't even know whether I believe in you or what I believe about you . . ." then that's the prayer to say.

2. Read the Bible. If you don't have one, you can read online at www.biblegateway.com , or you can stop by a bookstore, or you can e-mail me and I'll send you one.

You can start at the beginning and read straight through if you're feeling ambitious.

Or you can start with one of the biographies of Jesus' life: These are Matthew, Mark, Luke and John.

If you really like a lot of symbols and poetic language, start with John. If you want a straight-forward, nuts and bolts, Life of Jesus, start with Mark. If you want the accounts that have most of the famous stories of Jesus, including His amazing Sermon on the Mount and most of His parables, read Matthew and Luke.

And as you do these 2 things, be ready to see how God grows faith in you. Be ready to hear His voice. Be ready to get to know your Creator.

Half Time Remarks: Part 2 of 3

2009-11-29T05:00:00.000-07:00

The Difficult Parts

I haven't written too much about the tough spots of this experience because
a) my parents are reading this and the whole thing is hard enough for them already and
b) complaining doesn't make for good art.

But I'm writing a bit about them now because
a) they are part of the experience and I don't want to lose them and
b) you've all been assuming that this has been hard, so why not fill in the details?

1. Chemotherapy

Dr. Science told me, on that first day of chemotherapy, "It's not that bad."

I've seen for myself and can now judge: This is like the OBGYN who tells women that labor doesn't hurt "that much."

I'm going to suggest a different statement for his use. "The physical toll of chemotherapy is not that bad." It's not. I had a drug to manage all the physical side effects with the exception of the hair loss and the styes. (One of which I still have.)

But the hair loss is not a big deal to me, and the styes are not too much to bear.

The difficult part of chemotherapy is the emotional toll. It sent me into menopause, which wrecked havoc with my hormones and my sleep cycle, so already I wasn't going to be managing the emotional content with a whole lot of sanity.

Given all this, undergoing chemotherapy itself was just a sad, sad thing. I have a feeling it's a feminine response to feel this way. The men under 50 in the chemo barn had a completely different countenance about them. They'd sit with their laptops, working away, checking their pagers and cell phones and watches, coming off their drips with a chipper step, on their way back to work as though a stop through the chemo barn was nothing more than an extra-long stop at the Barber shop.

Was it just a brave front for them? Or is this just how men meet the physical challenge?

Because, to me, it mostly felt like a physical assault. And I'd just try to distract myself from what was happening in the chemo barn, and how it left me in the days afterwards.

2. Physical Deformity

I've written a lot about this thus far. On the one hand, it's not a big deal. It doesn't hurt. It doesn't impair any function. If I dress a certain way, no one need even know about it.

But Bryan and I know about it. And there's no escaping that intrusion.

3. A Husband's Helplessness

I've said nearly nothing about Bryan's handling of his wife's cancer. This is partly because he decided to handle it by being stalwart throughout. I would ask him now and again how he was doing and he'd say, with great sincerity, something very reasonable and calm and supportive.

And on those many, many moments when I'd cry at the end of a day, he'd hug me and say, "It won't always be like this." That was always a great comfort to me.

The struggle, for him, leaked out in little ways, harmless ones: He's been doing many projects around the house ever since the diagnosis, and in the last 4 months, he has purchased 3 firearms. . .

This past week, that season for being stalwart ended. Something about the chemo being over with has signaled to us both that the worst parts are finished. And he finally let loose with all he's held onto. We both just cried and cried and cried together. He hates that he wasn't able to "do" anything to save me from these worst parts.

I told him, of course, that his love and support for me and help with the kids was all I needed. That I did not need to be saved from, just helped through. He can believe me with his head, but the man in him can't really believe that in his heart. And that's just his own grief to bear.

Here's the part where a lot of people would say that their marriage is stronger because of the struggle, or somesuch. How the chief Good Thing to come out of the cancer walk is new-found love or commitment or realization of love. I completely believe how that is true of many people's experiences.

But Bryan and I are kind of like, "Eh, we could have done without this."

The chief Good Thing to come out of this cancer walk, I do believe, will be in a different department.

4. The End of Chemotherapy

In all the little booklets about How to do Chemo, no one ever mentioned the deep sadness that comes when it's all over.

But there's grief here, all right.

Something about. . . the excitement waning. Since early June, I have been She Who Has Cancer, and now I'm not. You might think I'm jumping the gun, after all, there's radiation ahead and we wouldn't do that if I didn't have cancer.

But, I really sense somehow that I'm not sick anymore. And we're doing the radiation, in my mind, because it's standard course and I'm a good patient.

So it's time to get back to our life. I cancelled our account with the Merry Maids and we all cleaned our house together yesterday. I had to ask Bryan the other day, "What did I used to do with my time before I was diagnosed?"--because since then, my time has been spent at medical appointments or in recovery or in a state of fatigue.

What does normal feel like?

It's an adjustment. And there were several days there when I felt like I didn't want to go back to being Amy Ponce!, superhero of the Every Day.

God has been showing me what our new old life should look like. It's exciting to have new plans. By the time my hair grows back in, I'm sure I'll be just fine with the Every Day.

Half Time Remarks: Part 1 of 3

2009-11-28T12:47:00.005-07:00

"Half Time" as in "Chemotherapy is over, Radiation ahead" -- and I might just come to think of subsequent surgeries at Over Time.

Part 1 is some bits and pieces:

1. After Half Time remarks, the nature of this blog will be a bit different. I plan to keep the record of the radiation experience, because you're all desperate to know what that's all about, right? But I won't try to post something each day.

The change in the nature of the blog is due to the change in the nature of my little adventure. In the past months, there was a lot going on--medically, physically, spiritually and emotionally. Writing about all of it was a terrific way for me to process all of that while bearing the additional fruit of the record of my experience.

But now, it seems like there's less to process. So there's less to write about. So there'll be less writing.

2. Many of you have sent along various items relating to Mammogate, e.g. that government task force recommendation regarding mammograms and when women should get them AND, in an extra-brilliant addition, whether doctors should teach women about self-exams.

There's nothing I can say about this that you probably have not already said for yourselves.

Except for this, which you might not know about: The American Cancer Society, for their part, notes that under the House health care bill, this task force recommendation would make pre-50 years mammograms a Class C preventative measure, and proposed insurance requirements would cover only Class A and B preventative measures, so officials looking to calm the storm my suggesting that this task force's work is meaningless are being a bit disingenuous.

While Leslie was here, we were in Wal-greens, scouting for a lip liner that had been discontinued--and we found 3 of them in the discount basket! Not sure what Leslie will do after those are used up, but I feel her pain, as Clinique discontinued a lipstick that was the perfect color for me and I've yet--8 years later!--to find another that suits me as well.

There we were, rummaging for lip liner, when a woman said to me, "Do you have breast cancer?"

Well. I was bald and wearing my pink "Chicks Fly" hat that Aunt Jill bought me. And I think it's my age that tips people towards guessing cancer of the breast. . .

"Yes," I told her, "And I recognize you from the Rocky Mountain Cancer Center, right?"

Conversation ensued. It was the day after Mammogate broke open and we soon were talking about it. I registered in just a few seconds: This woman was taking it personally.

So was another women I talked with in the chemo barn the following week. So was my Dad, who brought it up over the phone and got so upset I had to tell him, "OK, take a deep breath. . ."

So do I. I'm mostly annoyed over the comments on self-examination. Granted, I'm one of 0.5% of breast cancer patients--those of us under 40 with no family history of it. If we don't find it ourselves, it will kill us, because mammograms don't start until you're 40 under current recommendations.

And, as one of the 0.5% of breast cancer patients--a statistical blip to a bureaucrat--who is alive today directly because of all the awareness programs and professionals who've made self-examination as commonplace and teeth brushing--I pretty much feel like telling this task force, "Fuck you."

A larger point is that, as 1 in 10 women develop breast cancer, everyone knows someone with it. And therefore, nearly everyone takes this personally, especially the half of the population that both knows someone with breast cancer and who has breasts of her own.

Makes me wonder about the timing of these recommendations, given that the public reaction was entirely predictable. I'd almost say that this whole thing was a plot by the Vast Right Wing Conspiracy to plague Obamacare, except that I don't think there are currently any Republicans with the power and enough cleverness to have engineered it. . .

3. Speaking of Leslie's visit, we had a delightful time. Something about Rounds 5 and 6 were a lot more comfortable than 1-4. I had no GI discomfort at all. The fatigue was a little worse, but my body felt generally better.

So, whereas during Round 3 when Laura was here, I mostly just sat there and watched her cook copious amounts of food for our freezer (which lasted right through to round 6!), I was able to do a bit more with Leslie, and that was fun.

She cooked for us, too. But without the mission of freezing meals for us, she made the kind of meals that require stove top cookware instead of a crock pot and stock pot. All of which is to say that she cooked one meal in my house and then declared that I had to buy new pans.

We were off to the TJ Maxx Home Goods store where she picked out two pans for us, and then she was very happy to use them all week.

She's gone. The pans remain and guess what: It is a delight to cook with terrific cookware! I don't know what it is, but using these pans that are genuinly non-stick and that heat so evenly has changed the very meaning of cooking for me. I love to use them! I look forward to cooking now!

Who knew? Seriously. Who among you knew this and never told me?

4. While Leslie and I sat in the chemo barn awaiting my last neulastin shot (woo hoo!), we chatted with this gal across from us. She had a helper dog with her, and you know how dogs are great for stating conversations.

(Note on the chemo barn: Several patients bring their dogs. I've seen at least 3 little ones and 1 big one and this lady's animal was the only certified helper dog among them.)

She was a beautiful woman. Mid-50's, with a brain tumor that had spread into her neck. She soldiers on.

She learned that Leslie was my sister and then said, "Oh, sisters!" She had to spend 2 months in the hospital to get a stem cell transplant and her sister took a leave of absence from her job in Boston, flew to Denver and stayed in the hospital with her. "There's nothing like a sister," she said.

Leslie and I were both crying.

Very true. There's nothing like a sister.

Some Pink I Actually Liked

2009-11-25T05:00:00.001-07:00

Copied from an e-mail Sister #2 sent me:

Pink Glove Dance for Breast Cancer Awareness

" Our daughter-in-law, Emily (MacInnes) Somers, created,
directed and choreographed this in Portland last week
for her Medline glove division as a fundraiser for breast
cancer awareness. This was all her idea to help promote their new pink gloves.
I don't know how she got so many employees, doctors and patients to participate, but it started to really catch on and they all had a lot of fun doing it.

"When the video gets 1 million hits, Medline will be making a huge
contribution to the hospital, as well as offering free mammograms for the community. Please check it out. It's an easy and great way to donate to
a wonderful cause."

Ap!: It made me laugh, and then cry and cry and cry. But that might just be the standard after-effect of a chemo-round. . .

If it doesn't buffer well, you can find it at this link:

http://www.youtube.com/watch?v=OEdVfyt-mLw

And I'm not certain if watching it on this blog will count towards the 1 million hit donation. . .

Radi-elation

2009-11-23T20:44:00.002-07:00

I'm glad to be looking at radiation because it means chemotherapy is behind us. Here's what the approach of radiation has looked like:

Plan A: When Dr. Science mentioned radiation at my first appointment with him, I swear he said "3 weeks." I figured I'd knock it out soon after chemo and be done by the new year. Plan A lasted until Chemo Round 5, when Plan B was unveiled.

Plan B: 5 weeks of radiation, 5 days a week. He swears he never said 3 weeks. . . So. I figured I'd rest up after chemo, spend 2 weeks over Christmas with Bryan and the kids in Florida, by his parents, then come back and start the radiation in January.

I had gotten pretty keen on Plan B. I liked the idea of being recovered from chemotherapy, and of having a nice break from treatment, and of enjoying the whole month of December without having to use any cancer words.

Then Leslie and I went to my appointment with Dr. X-Ray.

He has a real name. But he is a radiologist. Am I supposed to resist giving him a name with a bit of jazz?

We both liked him. Very down-to-earth guy. Grew up on Long Island. Lived in Hinsdale, IL for many years before relocating to the Springs. We talked suburbs for a while. Very personable fellow.

When he told me the radiation would likely be 7 weeks long, I did not like him any less.

I posed Plan B to him, e.g. waiting until the new year, and his first response was to say that we have no data on how waiting 6-7 weeks affects the outcome. But, he said, if I really wanted to wait. . .

No, no. I'm not here to make medical history. Staying within normal parameters seems like a fine idea, and that means starting within 3-4 weeks of the last chemo treatment. And that means starting 7 December or so. And that makes for Plan C: 7 weeks, 5 days a week, starting early December.

We hope to get down to Florida in late January.

Other notes from the Dr. X-Ray visit: he noted that I am "thin."

I finally said out loud, instead of just writing about it, "I love it when doctors tell me I'm thin."

He laughed at this. But he's got a wife and a daughter, so he knows the score.

He mentioned the side effects of treatment: fatigue, possibility of lymphedemia, sun burn on the skin that will turn into a tan.

About the fatigue--I am hoping it will be of a different sort than what chemo produces. It comes from the body's efforts to rebuild cells, and that seems friendlier than the body's efforts to process poison and all the drugs taken along with them to control side effects.

About the lymphedemia--25 - 30% chance that radiation will trigger it. Let's pray against this. As you all know, it's the one thing I really want to avoid.

About the skin issues -- Dr. X-Ray concluded the description of burn into tan by saying, "So, it will end up looking pretty good."

"You mean, aside from the missing breast and scar running across my chest."

This made him laugh a little, too. "Yeah, aside from that" and then went on to describe what radiation of 20 years ago did to the skin. Ugh. Once again, I am so thankful for the technology that has come before me.

So there is your scoop. To paraphrase the Ghostbusters, shortly before they cross beams and nuke the StayPuff man: "Plan C. I like this plan and I'm excited to be a part of it."

The Last Round

2009-11-23T09:06:00.003-07:00

A week ago, Sister #3, Leslie, and I went to the chemo barn for Round 6.

Before the chemotherapy comes a blood draw from my port and then an appointment with Dr. Science to talk about the lab work and any other issues.

Sister #1 didn't get to meet Dr. Markus during her visit because I had a substitute doctor that day. This is only relevant to the extent that Laura, sister #1, is. . .very. . .normal. She behaves normally. She quite reliably doesn't say or do anything outside of normal parameters of American middle class society. So even if she had met Dr. Markus, I don't know that there'd have been anything to report.

Leslie is normal, too. No, really. She is. But sometimes, just to have a little fun in her day, she chooses to take half a step outside of normal and just let it ride. Just see what happens. Because it's fun. Because it's entertaining. Because, why not?

You're wondering: Like what? I don't know. It's hard to describe. She just has these. . .feminine wiles that distract and charm most men, causing them to get idiot looks on their faces.

And she's reading this blog. I don't think I'm saying anything that's not making her smile right now.

Going into my appt with Dr. Science, I couldn't help thinking, "Is this going to be one of those slightly-outside-the-envelope kind of moments for her? Could she reduce this brilliant man to an idiot look?"

He came in, I made the introductions, we got to talking about Round 5 and how I was feeling fine. He and I high-fived over starting the last round. All very normal.

I sat up on the exam table so he could listen to the heart, lungs, etc. . . I asked him a) how long after radiation one had to wait before having surgery and b) whether I could have surgery while taking the protein treatment, Herceptin.

A) 4 weeks
B) Yes

So, Leslie, who was sitting on the side chair as Dr. Markus and I were by the exam table, started doing calculations. 4 weeks this, radiation lasts that long, then this, then that--running these numbers, Dr. Science and I just staring at her, waiting for her point to emerge.

"So by early April, Aim," she concluded, "Poonph!!" and she motioned her hands by her breasts, making small ones into big ones.

Dr. Markus and I turned from her to look at each other.

He, not quite with an idiot look but at least one that was a bit bemused, and I with a half smile and a shrug.

I told this story to others, in front of Leslie, and she said, "I totally toned it down, you have no idea."

And for this, the good doctor and I are thankful.

As for the medical portion of the appointment. . . what next?

Radiation, which I shall explain tomorrow.

And then the big question: How do we know for certain that the heebie jeebie cancer is gone/has not come back?

1. I'll continue to go every 3 weeks for herceptin through August, at which times, they'll do a full blood count and monitor my blood chemistry. Sometimes, cancer in the system will register in those numbers.

2. I'll keep track of my own body, and if something feels different or seems to hurt or seems off, I'll tell him about it and have a scan of some sort.

"That's kind of intimidating," I told him. Having such a serious consequence predicated on my own judgement? Yeesh.

But he explained, of course, that I'm the best judge of my own body and that I "am not a whiner" so when I tell him about something he'll "believe me."

Not a whiner?

"Well, sometimes people come in with a long list of ailments and it's hard to know what has to be addressed. You're not like that, so if you complain about something, we'll know we have to look into it."

Here that, everyone? I'm not a whiner! I'll take that as the day's compliment. Though I note here that Dr. Markus is the one physician attending me so far who has yet to tell me that I'm thin. . .

Finally, unrelated to my own condition, is Dr. Science's, the day we saw him. I noted that he'd gotten some sun. He pulled out his finisher's medal from the San Antonio marathon. 26.9 miles. "This is why I'm walking funny," he said.

We congratulated him, wanted to hear all about it. And had his family gone with the for the weekend to cheer him on? No. He'd told his wife he was leaving for a medical conference.

What?

She doesn't like for him to do stupid things, he explained.

But how did he train without her knowing?

"I'd go out for a run and come back 3 1/2 hours later. . . But I do so many stupid things, this hardly registered with her."

I asked if he'd let his kids in on the secret--they are 7 and 6.

He said, no, they'd have blabbed.

"Oh," I commented, "They've got tight shoes."

What's that?

"They're shoes are so tight, it forces the truth out of their mouths." --shout out to Uncle Fe, who brought that expression into our family. . .

At the end of the appointment, with tears, I told him what an excellent physician he was and I thanked him for his compassion and for always making me and Bryan feel like he had all the time in the world to talk with us. I know some people do this cancer thing with doctors whom they don't like and don't trust. I'm so thankful that I am not one of them.

But before the appoinment ended, I asked Dr. Markus a probing question: what percentage of his job was sad work? He's an oncologist. A lot of his appointments probably carry sad news.

His eyes teared up and he said, "Quite a bit of it. We get really attached to our patients."

Did he carry that sadness home with him?

"We have different ways of coping. Some of us run until our legs fall off. . ."

So, a hearty congratulations to Dr. Markus on finishing his marathon. Not a stupid thing, in my estimation, but an heroic one. Especially if it's therapy to aid an heroic work.

Wellness Update

2009-11-22T18:57:00.003-07:00

Sunday evening.

Had a terrific visit with Sister #3. Plenty to tell you about her visit, and the impression she made on certain physicians, but not tonight.

I'm such a tease.

I cried a lot this week, every time I thought of how I am done with chemo. It's very surprising how emotional this end has been. I can't think of a good reason for it except to say that I don't think I've ever felt this kind of relief before, and I guess relief produces tears.

The other part, I realized during worship service on Saturday night, is deep, deep gratitude. To all of you. Seriously. Your comments, knowing you were reading this blog, knowing I had so many amazing people in my corner were all a genuine help along the road thus far. You should all very proud of yourselves and even productive.

"What did you do this year of significance?"
"I helped a friend get through chemotherapy!"

And then there was that time of worship with the Lord. My, my. . . I haven't had too many moments as intense as that one.

To be able to come before Him after Round 6 and say, "You promised not to forsake me and You didn't. And You did so much to make those weeks a lot easier than they could have been. . ." it was breath-taking.

There is that famous hymn "all is well with my soul," written by a guy who'd just lost his wife and daughter at sea, and it echoes a theme found often in the Bible and throughout the Christian life--that God is Sovereign, and come what may in personal circumstances, the thing that makes the worst conditions OK is the very character of the Living God--that He's faithful, powerful and good. And because of Who He is, one way or another, the story is going to have an ending that the believer can be thankful for.

I haven't--and we haven't--lived in anything close to the worst of circumstances. On a scale of 1 to 10 of Bad News, I'd say the year so far has been about a 3. But even so, now that I'm on the other side of that rough patch of surgery and treatment, and have experienced--not just been told about--walking with the living Lord of Lord through a narrow passage, I see the point of that hymn.

What a Mighty God.

I have much to tell you about radiation, The Visit, as I mentioned, and the coming Extended Blogger Break I'm planning on. But I'm still tired enough from Round 6 that I turn in early. And I haven't seen my husband in a week, so it'd be nice to talk to him while I'm still conscious. . .

Thank you again, truly, truly. I'm living with an embarrassment of riches.

Brief Notes on the Last Round

2009-11-16T19:15:00.003-07:00

DONE.

And there's a lot to say about it. For now:

1. My body feels pretty crappy right now. And yet I am so happy! Kind of like: hit me with your best shot, you crazy poison, because it's the last shot you get.

2. And I feel so thankful. Only the really wealthy women of the planet get this medicine, and I did nothing to be an American, thereby being one of those wealthy women.

I got this medicine before the cancer spread to a different part of my body, and that too, had practically nothing to do with my own merit.

I am a picture of grace: undeserved blessing.

3. And not only do I live, but I do so at the end of a yucky portion of road that was swamped with the love and support of so many, including all of you. God used all of you to make this comparatively easy on me.

4. I'm thinking of Song 10:

He is an everlasting God.
He will not faint, He won't grow weary.

Strength will rise as we wait upon the Lord.

Blogger Break

2009-11-14T05:00:00.000-07:00

Sister #3 arrives today. Chemo Round #6 of 6 happens Monday. Wooo Hooo!

The kids won't be able to stay with Betsy's family this time, though they will go out with them for a few hours each day. And I expect the side effects of fatigue, cramping and finger numbness to be the most severe so far.

All of which adds up to my not expecting to have a lot of writing time, nor the patience to type with numb fingers. Perhaps I'll get a wellness update posted, but maybe not.

So, I'll see you back here next Sunday, a week into my post-chemotherapy recovery. ;-)

B, G and J Day: Guns n' Doggers

2009-11-13T11:05:00.002-07:00

B:

I asked Bryan the other day if he had any ideas for Joshua's Christmas present this year. I was stumped.

Bryan suggested, "Some kind of projectile?"

I stared at him.

"You know, like a nerf suction cup dart gun or something."

"Would he like that? When did you get interested in those things?"

He stared back at me. Then said, with a hint of wonder, "For as long as I can remember."

G:

Gemma's birthday party is tomorrow, though the actual birthday is later. She made decorations for her party, crafty type that she is.

Then she made a sign that I will not let her hang up. It says, "No touch please" and features 2 illustrations: One is a hand drawn right up next to a picture of the pinwheel she made with a circle and slash over it. The other illustration is that same hand and same pinwheel, only with an inch of space between them with a circle around it and no slash.

This is the kind of thing that makes a mother smile.

And she can't hang it at her party because it wouldn't be polite.

J:

Bryan took the kids to an auction last Saturday. He packs up our DVD player, a ton of movies and many snacks and the kids camp out with great contentment. Clearly, he's programming them to become auction-goers, thereby further enabling his own hobby for years to come.

As it gives me the entire day to myself, I do not mind.

This time, he permitted Joshua to bring doggers with him. And doggers got left behind.

Bryan had no opportunity to retrieve him until Wednesday, a full 4 days later. Yes, I could have made the trip downtown to get doggers, but I thought Joshua should have to pay the price of waiting for him. I tell him all the time to leave doggers in his bed each morning so that he will not get lost. But he keeps sneaking that thing out. . .

Wednesday, Daddy got doggers and handed it to Josh, who hugged it and cried out, "Doggers has returned to me!"

For 2 mornings in a row now, Josh has left doggers in bed.

Theme Song Thursday: Sweetly Broken

2009-11-11T19:49:00.002-07:00

We sang this song last weekend in church. It's so powerful for me.

The best part about it, I think, is that it so clearly states the Christian gospel.

"Christian." "Gospel." "What Christians believe." -- terms that are tossed around often. But if we were put on the spot and ask to define them, I'm not so sure how many could pass the test.

And after expressing the core of the Christian gospel, the song sings out a response to it. It's my response, too. What a song for worship, to be able to sing out to God, "This is what I believe and this what it means to me."

A Few More HER Moments

2009-11-10T20:15:00.003-07:00

Remember those? Take one moment and live as though it is in an entire lifetime? I've had a few of those lately.

For instance, I scheduled Joshua's 3 year well baby appointment for a Monday morning. As though I would be able to keep a Monday medical appointment that was not my own.

Christ suggests that this kind of thing means I'm getting back to regular life, carrying on as usual, and that it's a good sign that I don't hear "Monday" and think "Chemo barn."

I like the positive spin.

And it also works to cover the next HER moment: I wore a turtleneck to my protein appointment this week. As though the nurse wouldn't need to access my port that day. Usually, I wear a V-neck shirt and I just tug it to the side to let her stick me. This week, I was yanking my shirt far over just to give her a peak at the spot.

Next up: I ran some errands with the kids today, got them all buckled in to leave the parking lot of Party City, and discovered that my key was missing.

Not my keys. Just my key. The one that turns the car on. It wasn't attached to my ring with all the other keys that, now I realize, I wouldn't have minded losing right then.

It was nowhere. Not in the front seat. Not in the back. Not on the asphalt near my car. Not on the sidewalk. Not in the store where we had tread. How would I get home without a key?

I was so calm about it, I even thought, "Wow, you're being really patient, Amy!" Then I thought, "While you're at it, why don't you live this key-less moment as though it were a whole lifetime?"

Then I looked in the bag of things we'd bought for Gemma's birthday party, and there it was.

Final HER moment to share:

We came home from errands to our home after the Merry Maids had left. That's right. We have maids clean our house. It's almost the first thing I told Bryan after that first medical appointment to check out the "swollen lymph node." I said, "If this is cancer, we're getting a cleaning service."

And it's been wonderful. I've especially appreciated when their day here has fallen during a chemo week.

So, it's like, "Kids, keep this house clean! The Merry Maids were just here!"

Then I told Joshua to make potty.

Asking him if he had to go doesn't usually work. But if we remember to tell him every 2 hours, then he does pretty well. Many times, he'll say he doesn't have any potty and he'll carry himself with slumped shoulders and whining voice--oh the oppression!--to the bathroom. Then we'll hear him whiz for about 25 seconds straight. Yeah. "No potty."

Today, I told him to go. He dropped trou and went without fuss. Then found that his stool was not lined up right in front of the commode. And that the seat was down. So he just let it rip.

All over the wall. And mis-placed stool. And downed seat.

"Joshua!" I yelped when I saw. "The Merry Maids were just here!"

Here's one toy I would not give a 3 year old boy: A bottle with a squirt cap that is full of urine. "Here, son, squeeze this baby 'till it's empty, but only into a toilet, OK?"

But the choice to equip my child with a very similar toy wasn't mine to make.

I mopped up with a towel. Wiped up with a bleach rag. Thought to myself, "I am thankful that this is not my entire lifetime."

Triumphant or Troubling?

2009-11-09T19:04:00.007-07:00

Another protein day at the Chemo Barn!

My friend, Chris, took me, as she has for almost all of my protein appointments. She makes the time pleasant for me, though the Chemo Barn itself is not. And that's the subject of this post.

Flash back to my genetic counseling appointment. That guy offered a few tips about the road ahead of me that have proved more helpful than anything a doctor or nurse has told me. For instance:

He told me not to believe anyone who says that "such and such" caused my cancer--not my deodorant, not my underwire bra, not my laundry soap. There's no science to support any of these urban myths.

He told me to steer clear of the "dark clouds" in my life. e.g. People who will be sad, sad, sad for me and full of fear and pessimism. No dark cloud has come by me all this time, I'm glad to say. But still. Helpful tip.

He told me to beware of the "nuts and berries" friends who would try to be helpful by telling me to pursue all sorts of alternative therapies and avoid the very treatment that has been scientifically demonstrated to work.

He, as I mentioned, told me about how terrific the post-restorative surgery women looked. That was very helpful.

Then I asked him how he liked his job. He was, after all, going through this practical, encouraging spiel when the purpose of the appointment was simply to explain the genetic test I was submitting too. Obviously, he was into talking beyond the requirements.

He said he loved his work because he loved cancer patients. "Only really nice people get cancer. No one nasty or selfish gets it. Only the bright, brave, cheerful, nice people."

What a strange statement.

Flash forward to chemo round 4, I believe, whence I met Shannon, a nurse who was new at the center. She explained that she'd been in the Springs for a while and had been at a different job, waiting and hoping for a position in oncology to open up.

"Really?" I asked. "You want to work in a chemo barn like this?" I don't know what I'd been thinking about the other nurses, why they were there. But the suggestion that someone would seek out the opportunity to spend 40 hours a week around cancerous people getting doped with poison was just. . .far beyond me.

Shannon said that she loved oncology units because she loves cancer patients. We're so "courageous" and "full of life."

Today, Chris, who knows well my own take on the chemo barn, said that she, too, had different opinion of it. She wasn't sitting there with cancer, she said, so maybe that's why she had a different outlook. (But her husband is a "ventricular" cancer survivor from way back, when they were both in their early 20's with 2 young children, so she is allowed to have an opinion on this.)

Chris said she looked around and saw the triumph of the human spirit, and God's grace, and great strength.

Well.

Maybe we should take a poll in the chemo barn and see what other patients feel.

I talked with one a few Mondays ago, Jeannie. She was there my first round of chemo. It was her last one. She watched me get poked 24 times and told me that she'd never seen anyone have that hard a time. Jeannie was there to start more chemo. Stage 4 colon cancer. She'll be doing chemo 'till the end.

I said, "You told me on your way out that first day that it'd get better. And it did. But I still hate this place."

She laughed wryly and said that she did, too.

So we know how she'd vote. And you all know how I think most of the others would vote.

All of which comes to an observation: Those who care for those of us who have cancer see something that we patients do not.

And those of us who have cancer see something that the healthy among us do not.

What I'm interested to see is whether my perspective shifts closer to Chris's after my chemo is over and I'm just going every 3 weeks for the Herceptin. e.g. Once I'm feeling great, will I see what she sees and start seeing a lot less of what I see now?

In the meantime, I'm glad to be cared for by people who are glad to be in the Chemo Barn. Even if I do think they're a little crazy.

Quick and Dirty on the Cheap and Clean

2009-11-09T09:25:00.003-07:00

I made another batch of laundry detergent yesterday. Who makes her own laundry soap?, you ask.

I do. And here's why:

A big part of the job of She Who Does Not Earn Money In Any Kind Of Bread Winning Capacity is controlling the flow of money that goes out. Bryan and I have goals for where and how we want to live. Goals that are sometimes specific and sometimes as vague as "Be available to do what God wants us to do when He wants us to do it."

And one of the most basic determining factors below each of those goals is money. It's not that we're obsessed with making it or keeping it or investing it or spending it. We just want to be good stewards of it.

It's Bryan's job to bring it in. It mostly falls on me to see that it goes out it in honorable ways.

All of which was on my mind about a year ago as I stood in the laundry soap aisle of the commissary, wondering a) how soap could be so expensive and b) why it was blue.

I haven't researched the answers to these questions, but I suspect there's another Proctor & Gamble conspiracy behind it. You know the kind: At one point in American history, homemakers were told they needed a certain product to get along, they started using it, their children only ever saw them using it, and so the culture as a whole forgot that there was ever a time when we didn't need it.

But that day, I just couldn't bring myself to spend the eleven bucks on soap. I don't even spend eleven dollars on soap to wash myself!

And I hated that it was blue. And that it claimed to smell like mountain breezes. I can step outside to get a whiff of a mountain breeze. . .

I found a recipe for making my own and washed my first load with it.

Were the clothes clean? Looked like it.

The test, of course, was the smell. Shirts checked out. Then I sniffed underwear. Hey. This is the test that really counts, right? Checked out just fine.

I washed another load, this time with some clothing that was very dirty from Bryan's yard work.

All clean. So we made the switch.

Let me break down the price comparison:

I can buy (blue) store-bought laundry detergent at a price that comes to 11 cents per load. (And I suspect this is a commissary fantasy-price somewhat lower than what people pay in the real world.)

I can make laundry soap at a price that comes to 1 cent per load.

The batch of laundry soap makes enough for 64 loads, which means that every time I make a batch, I'm saving $6.40. We do a lot of laundry, it feels like. I make about 8 batches in the year, for yearly savings of $51.20. It takes me 15 minutes to make it, so that's a total of 2 hours of work, though not the kind that interrupts my life with my family. $25.60 is not a bad hourly wage for this kind of work.

Just a little snapshot of my philosophy of thrift.

Who, now, is dying to know the recipe?

Ingredients:

Fels Naptha soap (in the laundry aisle, or any other brand of bar laundry soap works)
2 cups Washing Soda
2 cups Borax
2 empty milk gallons

1. Heat about 1 gallon of water (exact amount doesn't matter).
2. Grate 1/3 the bar of Fels Naptha and save the rest for future batches.
3. Dissolve Fels Naptha in hot water.
4. Add washing soda and stir until dissolved.
5. Add Boraz and stir until dissolved.
6. Leave on heat until mixture boils.
7. Pour half into each milk gallon--using a funnel helps a lot.
8. Add warm water from your tap to fill each gallon to the half-way point or a little higher.
9. Shake, shake, shake.
10. Top off each gallon with cold water.
11. Shake, shake, shake.
12. Let sit overnight. It will thicken up to resemble egg whites.

I've made batches that have ended up both thicker and thinner, and it all works the same.

Use 1/2 cup per load. A bit more if it's a full load, or especially dirty.

This soap does not suds up. For this reason, I would think it's fine for high efficiency machines as well, but I haven't talked with anyone who's tried it.

And my soap is not blue.

Comments on Comments: First Week of November

2009-11-07T04:23:00.005-07:00

When I threatened to become more extreme than "old ladies who wear purple," Helen asked if I plan to head to a nudist beach in Florida.

I've thought about it. But having gone through one kind of cancer, I can't imagine putting myself at that much greater risk for another. e.g. Skin. Florida sunshine.

Do nudists have a higher rate of skin cancer than the rest of the population? Do they buy sunscreen in bulk? Do they apply it. . .everywhere?

Speaking of sunshine, Amanda testifies to the delight of Colorado sunshine. 300 days of it a year and, I hasten to add, no humidity.

Now that Bryan and I are looking to stay here for the long term, I find that common military-family mechanism of "detachment" sloughing away. As we've moved around so much, I naturally kept a little piece of my heart back from wherever we were, because we were never going to be anywhere very long. I haven't done that with the people I've known in each place, just with the place itself.

There's no holding back now. I am growing to love Colorado Springs. I might even make a weekly feature about it if the rest of my life becomes boring enough, and that feature would begin with the climate.

Gwen posted here about giving an NHS speech at good ole Immaculate Conception. Gwen is married to Larry, my friend who survived "ventricular" cancer, and she was in our graduation class, though Gwen and Larry were not high school sweethearts. (Which I've always thought was sweet--that they connected further down the road. . .)

Hearing from Gwen prompts me to comment on something I've been thinking for a long time now: Part of the fun of having cancer is being in touch with so many people, some of them from way back.

I've gotten many, many e-mails from friends who weren't in my life daily anymore. You know the kind: nothing bad ever happened. There's no water under any bridge. You just fell off each other's radar. Maybe military folks have more of this than others because of the moving around. In any case, it's been really neat and wonderfully encouraging to hear from folks. I'm still working on writing back to everyone, so if you happen to be, say, Beth from Korea, I'm getting there. :-)

Sarah gave a Huzzah to the homemade costume. She mentioned that Babs, her mother, made her son's Swiper costume, which was amazing and adorable.

To which I say: Yes, Hoorah for homemade costumes, but double and triple hoorah's for homemade costumes that GRANDMA puts together.

To whit: My mother was in town helping me as my ankle was broken during the weeks before Halloween last year. I'd had the plan for Gemma and Joshua's costume. Had even gathered most of the materials. And then Anne arrived and actually, you know, made the things.

I realize now that my surgery was ill-timed. I should have delayed a few months so the seamstress would have been in residence again.

Finally, more flytrap discussion.

Spiders in Colorado? Yes. We do have a few of those. But I couldn't bring myself to capture one.

a) Spiders eat flys. It seemed an upset of the natural order for a plant that eats flies to eat a bug that eats flys.

b) While I don't like spiders, I respect them. Their amazing little creatures, what with the webs and being able to spell out words above pig stalls. . . No spider deserves the horrible demise of slow digestion inside a flytrap.

Amanda offered to send ladybugs. But ladybugs are among the good guys of the insect world. I couldn't do that to one. And Gemma captured a ladybug this summer and made a pet out of it. We looked up what it needed to survive and she built a little habitat for it. After a few days, she released it into our garden willingly, though it made her sad to do so.

I know there will a come a time when Gemma realizes that I'm not a perfect person who only ever thinks and does the right things. But I don't want that moment to be when I suggest feeding her former pet to a plant.

BUT, the other night, we were playing in our family room when a hapless fly landed on a toy right next to Bryan. He said, "Oh. . .yeah. . ." and swiped it up in his hand!

Then he plunked into one of the terrariums. We gathered around to watch, but the fly hardly moved. It was stunned from its smack-down. And dinner was ready. When we came back to the plant 20 minutes later, there was no fly.

The next morning, one flytrap stood stiff with the sun behind it and there within was the dark outline of the fly.

Flies. They're filthy, disgusting animals. I had no problem participating in that feeding frenzy.

On Friday, Bryan got home early from work and we made a little trip to Green Mountain Falls, a cute little town just up Ute Pass. They have a big pond where we fed the ducks and where the kids played for a while. We ate lunch at a restaurant called the Mucky Duck, which is amusing, because there's a Mucky Duck on Sanibel Island, FL--and what are the chances two places would come up with a name like that?

Our booth was next to a window, and on that window, two flies strutted about. Bryan captured them in an empty plastic bottle. Before I could stop him, he put one into the other plant terrarium. "Stop him" because Gemma and I were conducting an experiment. We wanted to know if the plant that was given protein would do better than the one that had to go without.

Well. So much for that investigation.

Again, we gathered around to watch. This fly was robust and on his feet quickly. Hmm. . . The attraction of sweet nectar in this pink thing here. . . Then SNAP!--only the fly tumbled out and knocked up against the terrarium wall. It seemed disabled and there was goop on the wall where his wing hit. I wonder if the enzyme from the trap was already about its work on him.

All four of us, at the moment of that nap, were like, "Ack!" or "Doh!" or, other reactions common to people who, say, watch football games and react at the moment the amazing catch is almost made.

The fly wouldn't go near the plant again, so we went about our business. Later: no fly.

I mentioned our plants to Mr. Colorado, our neighbor, and he said he used to feed bologna to his.

You know what the most amazing thing about venus flytraps is? That so many people have had one! Amanda, Teresa, the librarian at East Library, Mr. Colorado. . . Here, I thought this would be the kind of thing one had to have a license to own, or something, and I'm finding out they're as common as goldfish.

Well. This is the beauty of comments. I learn so much about you all.

B, G and J Day: Vintage

2009-11-06T05:23:00.002-07:00

B:

He has become a Craigslister. This is mostly because of me. Our garage was full, you see, and our basement full and our barn in MO not full, but somewhat filled with stuff.

Too much stuff.

Stuff that Bryan agreed we needed to get rid of. But stuff that was "worth something."

Oh yeah? Fine. I've got a friend, Stephanie, who sells things on Craigslist. I talked with her about selling our stuff for us and I'd share the profit with her.

Then I told Bryan that this friend was on deck to begin the liquidation and he said, "I'll sell it myself!"

Oh yeah? Well, you got through the weekend to get started, pal.

And he did. He began with the 5 ficus trees he bought at an auction 2 months ago, when I asked him to buy me one ficus tree for our master bedroom. But at 2 bucks a piece, how was he going to pass up a whole forest of them?

He sold them for 20 bucks a piece, at which point, he was likin' the Craigs list. . .

Since then, he's sold a lot of stuff at prices a lot better than one would get if yard saled or auctioned. Part of my deal with him is that he can keep his profits in his own "auction fund" to do with as he pleases. I have a dream that his auction-going will become a self-sustaining hobby. . .

So. One of the items he sold was a vintage Coca-Cola cooler. It was metal. Not very thermo-efficient. But classy in that banged-up vintage way.

The buyer first asked Bryan if he'd come down in price, but Bryan said, no, he was pretty sure he could get that much for it.

The buyer still wanted it, and wrote,

"Just to give you a snapshot of this cooler's future life with me: I have a ranch outside Denver and I use my '63 Chevy pick-up to get around. Your cooler will ride in back and have a couple of cold long necks waiting for me at the end of a hot day. Big Red, as I call her, is going to look great with a cooler from her day."

Charming, right?

Bryan read this and didn't want to sell it to him. My husband thinks that such vintage items should be displayed somewhere in a cool, dry place away from direct sunlight. This guy was going to use the cooler? As a cooler???? What was his problem?

My only thought, after reading this "future life" spiel, was that the guy was going to show up and try to dicker down the price again. That he was trying to soften us up with his tender vision.

Bryan arranged for the sale. The guy drove down during the day and I was sure to be wig-less when I answered the door. Who's going to try to dicker the price with a cancer patient?

He turned out to be a very nice, very wealthy man. Signs of wealth:

1. He lived with his wife and newborn son on a horse ranch while working as a lobbyist in DC. I didn't ask what he lobbied for because I didn't want him to tell me something horrible. . .

2. He told me about his '72 Mercedes, of which only 600 were made, and how he kept it completely original, right down to the television set in the back seat.

I received these data points with a polite smile and thought, "I'm glad Bryan didn't come down on the price."

The buyer did say something that will stick with me the rest of my life. He explained how he and his wife really enjoy antiques from all over the world, and that he is just passing through history. As such, he's the care-taker of these items that will belong to a different place, time and person after he's gone.

What a lovely way to think of antiques.

I shared the thought with Bryan, who said, "Yeah, well as caretaker, he probably shouldn't fill the thing with ice!"

G:

The other night, Gemma arranged in the afternoon to have chicken tenders for dinner. It was a pre-emptive request as she realized that I would be preparing big salads for Bryan and myself.

Sure. Chicken tenders. No problem.

As the dinner hour approached, she saw the literature packet regarding my PowerPort--that valve thing implanted in my chest. What was this for? she wanted to know.

I explained. Or tried to. Wasn't sure if I'd done a good job making it clear. I finished the explanation and then asked, "Capice?"

Long pause. She looked at me and then said, "You mean 'chicken tenders.'"

J:

He came into my room one morning, too early. Had his jammies off. His pull-up off. His underpants up around his knees, which is about as far as he can go when dressing his bottom.

"Good morning," I murmured to him as he stood by my bed. "Did you get yourself dressed?"

He nodded and said, "A little bit."

Bonus J story:

We were reading on the couch today, a child on each side of me. He turned towards my ear and said, "What's this?" and started poking his fingers in.

Kids do this when they're 3. They notice that human beings have ears and that ears are full of contours and it's just a major discovery.

So I answered him, "That's my ear."

He glanced at me with a look that kind. . .waived me off. Like of course he knew this was my ear. And he kept fiddling, his brow furrowed.

Then he pulled out the little white cushion that was on my ear bud from the ear phones I wore while working out this morning.

"No, this!" he said.

Oh. That. Yes, that is a real discovery. . .

Theme Song Thursday: The Stand

2009-11-05T05:00:00.000-07:00

Beautiful metaphor in this one.

How is it that I can stand?

I'll stand with arms raised and heart abandoned
In awe of the One who gave it all
I'll stand, my soul, Lord, to You surrendered
All I am is Yours

Tissue

2009-11-04T05:00:00.000-07:00

The theme of this post is "tissue."

But don't let that put you off. I really just have 2 items spawned by your comments that I didn't get to in Saturday's Comments on Comments, and as I try to justify throwing them into one post, I find a common link:

1. There's the tissue that venus flytraps eat. Are the inside guts of inverterbrates considered "tissue"?

In my house, in Colorado, in October and now November, there are no inverterbrates to be found. Some of you suggested a banana would work when the pear failed.

(I pulled the pear out a few days ago, when Gemma happened not to be around. Yesterday, she noticed the pear-less terarium and said, "I guess the flytrap ate up all the pear!")

But the banana did not work. No fruit flies to be found. So we're going to go with the raw beef plan. Amanda swears it did not kill her plant for at least 2 years. Plus, the beef we eat is grass fed and hormone free. I don't know of another flytrap in captivity that will eat this well. . .

A few have asked what the kids thought of it. When I first unveiled it to Gemma, with Josh not present, I told her, "Stick your finger in there," and she did, and the trap closed up on her. She yanked her finger out, very startled, very mystified.

I explained a lot right there and she thought it was wonderful. She wanted to poke it again, but I told her that this weakens the plant and de-sensitizes the traps, so she couldn't.

The next day, it was Joshua's turn to meet the pet. Gemma said, "Josh, put your finger right there," and he said, "No. Those poky things will grab me."

Huh! Funny how he knew what would happen. I let Gemma demonstrate with her finger and Joshua has not gone near the plants since.

#2. Also about tissue. Breast tissue. (How many of you saw that coming?)

A friend e-mailed with an interesting reflection: She was trying to imagine what the loss of a breast would mean to her, and wondered if, as a small-chested woman, it would add up to less grief in some way.

I'm pretty sure part of her point was that she doesn't bank a whole lot on her bust size right now/doesn't pick out clothing that celebrates it/doesn't see "hourglass" in the mirror and so wonders how big a deal it would be if what little is there now weren't there at all.

Hmm. It is interesting. And I have 2 thoughts about it.

a) I used to wonder, too, what it would be like to lose a breast or two. Long before the diagnosis. Long before feeling "that swollen lymph node." I didn't think about it often. But there's a lot of pink around, people, and on a few of those ocassions of seeing pink, I thought about it.

When I compare what I'd imagined it would be like to what it's like, I realize that this is just one of those things that can't be accurately imagined. There's just no other experience that compares to or mimics losing a body part, though I suppose I share a little common ground with someone who's lost, like, a finger or something. . .

On the one hand, it's not as horrible as I'd imagined it would be. But in some ways, it's a lot worse. I guess I just look forward to a time when no one has to know what it's like. I'd love to be like the last blood-letting patient the world knew, reminiscing as a 90-year-old what was done and why while first year medical students listen and say, "You're kidding me. . . "

b) Here's an even bigger chunk of insight: You would all be amazed to know how much breast tissue is on your body!

Women and men, boys and girls--everyone has breast tissue!

Without it, and I almost wish I could show you a picture, but I won't, so don't every worry about that, the human body is a touch concave.

There's the pectoralis muscle, and below it, where the breast tissue was, is now a rib cage with a layer of skin over it. Nothin' else. Nothing else to make it "flat," as I say, the contour is actually concave.

I'm picturing right now my male readers, if any remain, and I wouldn't blame them if they didn't, feeling their chests right now, saying, "No way, man, I'm a rock up there."

No, you're not.

Your pec occupies a different space on your body from your breast tissue. And body builders get so big, the pec encroaches upon the breast tissue's territory, but it's still there.

All of which is meant to demonstrated to small-busted ladies out there: You might be pretty close to being flat-chested right now. But without those A-cups, you'd be concave. And there's no shirt out there that could flatter that line.

I'm glad to share this with you because I found it to be a fascinating anatomical observation that, I'm pretty sure, you'd otherwise not know about.

I'm also glad to share it because I think there's a lot of uncomfortable curiosity about what "it" actually looks like, one we're driven to the more pink our world becomes, and yet one we just can't imagine if left to our own devices.

Halloween

2009-11-02T21:13:00.006-07:00

I hate Halloween in Colorado Springs. The don't do it right.

#1. They don't trick-or-treat until after sunset. In Elmhurst, we started at 3:30. We were done in time to eat dinner and do homework and go to sleep at a normal hour.

No, it wasn't dark during the bulk of our efforts. But we were warm.

#2. Which leads to an addendum objection: Because the trick-or-treating doesn't start until nightfall, it's so freaking cold. My kids are little! Josh is only 3! He might be meaty, but even a juicy 3-year-old should be inside when the temps are in the teens.

#3. People around here celebrate the occult.

I know you're thinking: Uh, yeah. It's Halloween.

But in my day, people had carved pumpkins and, like, corn outside their houses. There was one family on Hawthorne down the block from us who made their front door very scary and Janice and I knew to skip it.

Here, there is no skipping. There is a lot a lot a lot a lot of dark, gruesome decorations. When I was a kid, the holiday was about creativity and work ethic.

The creativity part--well, come on, who bought a costume? Practically everyone put together one of his own. And it was a day my own mother really shined: she made more than a few awesome costumes. And then we grew up to make our own.

I now rank coming up with a great costume for my kid right along side baking a really great chocolate chip cookie. It's a Gold Star of motherhood that should count for nothing, yet it's a star I want.

And the work ethic? This was our first experience of putting labor in to get reward out. Nothing more pure than the labor of trudging house to house; nothing more motivating than candy.

You want to stop working? Fine. Go home.

You want more candy? There's the doorbell, kid.

Now I look around and people are celebrating, and innocent as I'm sure many think it is, they're celebrating the heart of darkness.

Skulls. Skeletons. Figures strung up in effigy (In years past, of our own President; but of course, no, no, not now. . .) Cauldrons. (!) Houses with tape recordings of incantations being chanted out in haunting voices. (!!) Mock graveyards put up in front yards. (!!!)

And so, so, so many people dressing up as witches, which is a little rich considering that Manitou Springs, Wiccan capital, is right next door. I mean. Where's the multi-cultural sensitivity, people? Are we going to co-exist or not?

Bryan and I want our kids to enjoy Halloween the way we used to. But there's a lot to protect against. The elements. Satanists. People who aren't Satanists but who decorate their houses as though they are.

But I've ranted so long, you've probably forgotten my talking points:

The Ideal Halloween includes:
1. Homemade costumes.
2. Not being out all night.
3. Avoiding the occult.

Got all that? Good.

A week ago, I found myself staring at the Costume Wall at Party City, feeling like a failed woman mowed down of her potential. Because I was bald and menopausal? No, no. Because I was telling my kids to pick out a costume.

What do we got here? We got princesses whose skirts light up. We got a ladybug. We got a doctor. Whatever you want, Gemma. Except a witch. You cannot dress up as a witch.

She chose to be a pirate. "High Seas Buccaneer" was the official label. Because Joshua chose to be a pirate and she wanted to be something along with him.

I thought to myself, as I paid too much money for this garb, that I could make them into pirates if. . .if. . .if I had any mojo whatsoever. But I was out of mojo. And one day, my kids will be telling their college friends that the best Halloween was the year they got to buy costumes in the store because their mother had cancer.

All week long, we'd planned on trick-or-treating at the mall. It is indoors and warm. It is not decorated ghoulishly. The kids could wear their costumes without coats and get candy and avoid the guy who dresses like a mummy and jumps out to scare children!

But come Saturday, the weather was so nice, the kids were able to put on sweatshirts under their costumes and stay plenty warm. And we knew where the mummy lived, so we could just avoid him.

At 4:30, with the sun still shining, I took them out to the neighbors' houses. Yes, it was almost 2 hours earlier than the time others would start. But my neighbors wouldn't complain. As that was Day 6 of chemo round 5, I was done walking after our brief tour of the cul-de-sac and one other close-lying home.

Then I ate dinner while Bryan left with the kids for the real trick-or-treating. One friend asked, as his kids were at my door, "Is Bryan going for the marathon this year?"

I shrugged and said, "I have to let Bryan be Bryan." And if the kids were up for it, then just think of the work ethic they were cultivating!

I sat in front of our house with two of my neighbors and our bowls of candy on our laps, saving the trick-or-treaters the trip to our front doors. Bryan got back with the kids just as the sun was setting. They ate dinner outside and helped hand out candy and played with their friends on the cul-de-sac and Bryan built a fire in our portable pit.

Night fell and it was brisk, but toasty enough by the fire and a lot of parents warmed themselves by it while their kids completed the circuit around the sac. It was all so friendly.

And the costumes! One brother and sister dressed as robots, complete with silver boxes and HVAC tubing on their arms, lots of doo-hickies painted on the front as controls. I gave them each a huge handful of candy as a salute to their effort.

Lots of cute kids cam along. Including one tot whose mother said, 'Now what do you say?' He responded, 'I want more!' Stephanie, the neighbor sitting next to me, gave him a huge handful of candy in a salute to his effort.

She also kept a tally: 112 trick-or-treaters.

At some point in the night, Bryan said, "Should I go out with them again?" Gemma and Josh gave a rousing cheer and off they went, taking their friend next door with them.

As to our contact with the darkly decorated houses? At least our kids didn't get scared, really. And the occult came to us, in the form of more than a few costumes.

Most notable was an 8-year-old girl whose lips were black and whose face was white. She was wearing a black, flowy dress and wings that were patterned with silver spider webs.

"What are you?" I asked.

"A Goth fairy princess."

"Oh." Is what I said.

What I wanted to say was, "What does the word 'Goth' mean to you?"

By 8 O'clock, the fire was doused and we were headed in.
Somehow, not the Ideal Halloween.
But somehow the best Halloween I've had in a long, long time.

With some of their cul-de-sac friends, Kate and Joshua. Kate is a "60's Girl," and Joshua is a cowboy.

Comments on Comments: Last Week in October

2009-11-01T12:46:00.003-07:00

Yesterday's Saturday feature gets moved to today. So, no Sunday Storytime.

I didn't write yesterday for two reasons. The first, on the downside, is that my fingers become increasingly numb from the "T" portion of the "TCH" chemical cocktail. I've felt it each round, with each round being a little bit worse. This time, I finally reached the point where I wouldn't have been able to type well enough to avoid frustration.

It doesn't hurt. More like a very, very dull sense of pins and needles in my hands and especially fingers. So. That was good for a day off.

The second reason is that yesterday was Halloween. Photos and post about that coming this week, I predict. It turned out to be a terrific evening, abnormally warm for these parts. The kids, Bryan and I all had a great time.

Now, to your comments:

One Gerri Dobry posted on line and caused much confusion among my family. Mrs. Jan Dobry lived 4 doors down from us for-practically-ever and this new "Mrs. Dobry" shows up and made them think, "No. Your name is not 'Gerri.'"

No, no, no sisters. My Mrs. Dobry is my literature and history teacher from 7th and 8th grade. "History," though they called it by that abominable term, "Social Studies," because, in truth, she is the first teacher I had who took history seriously and was serious about teaching it. (And the only, I might add, until Mr. Frank Andrew Zdun strode onto the scene my Senior year of high school. "Good luck on your exams." --That was for Sarah and Suzanne. . . )

Yes, yes, so Mrs. Dobry. Also, and more importantly, the first teacher who took literature seriously and opened that window into seeing the power of writing. Maybe a lot of kids have a moment like this at age 13 or 14, but it was in her classes that I saw for certain that writing was something I loved and that I wanted to do, without really knowing much more beyond that.

Well. I could go on. Suffice it to say that the one year I found myself teaching 5-8th graders--a job I got just 2 weeks before the school year began--I sat down and thought, "Square One. How am I going to do this? . . . Well. What did Mrs. Dobry do?"

And I went from there.

And I was a kick-ass teacher.

So how cool is it that Mrs. Dobry is reading my blog??? And has been e-mailing me all along, only perhaps just recently she figured out how to post in the comments. :-)

Speaking of confusion cleared-up, from your comments, we see that some have learned that "puggle," though surely a relative somehow of something Hogwartish ?, is indeed a baby platypus, and you also all know what AWANA stands for.

It's likely I'll go to the meeting tonight, even though chemo patients on day 6 of a round should not go. But aren't you paying attention? I'm done with all that now. And I'm going. I'll just stay out of the little rooms and hand sanitize 6 different times an hour. . .

A bit of discussion about Gramma's stuffed shells. Sister #3 is coming for Round 6, and she can replicate that famous and grand dish that I love so well. Meat? Cheese? Meat and cheese? It doesn't matter. What matters is that they are awesome.

Now, Bryan is leaving the Tuesday morning of Round 6 to help his parents down in Florida. I told him, too bad he's leaving, he's going to miss the shells.

He said why can't we just freeze some for me.

I said this is Gramma's stuffed shells we're talking about. Why not just. . .just. . .freeze the Mona Lisa?

He looked at me askance.

Then Leslie said I was a terrible girl and of course she'd make them while Bryan was here and of course she'd make extra to freeze for later.

Sheesh. You'd think the guy had cancer.

Ah, well, all the same to me. I'll be eating very well that whole week, regardless.

Some comments via the blog and e-mail regarding my conversation about the prettiness quotient. Sounds as though I'm not crazy, which is a relief. A toast to our mutual beauty, ladies!

And dear Helen suggests that I re-visit the topic at age 60. By that time, I plan to be on a completely different page that the mainstream. Old ladies who wear purple will seem normal compared to where I plan to head. . .

Finally, Mom notes that we Ponce's were romping around in a pumpkin patch full of snow, and yet not wearing full-on snow gear. Yep. It's the sun. So warm here.

A snowstorm this week, for instance. Schools were delayed on Monday, and closed on Wednesday and Thursday. By Friday, it was mid-40's and on Saturday, high 50's, all the snow and ice melted, and the kids trick-or-treated with just sweatshirts under their costumes.

Here is the thing I love about Colorado. Well. One of the things: The sun will come out tomorrow, or soon after.

The bleakest storm gets melted away.

Even if it doesn't melt, the wind stops blowing and you can play in it because the sun is so strong, it warms right through the cold air.

Did you know that Scripture calls Jesus The Morning Star--e.g. the sun? With 2 weeks remaining before the last round, that is an image I can bank on.

B, G and J Day: Photos!

2009-10-30T10:17:00.003-06:00

What better day to fill a post with photos than Day 5 of a chemo round?

Here we have a mouse from the Ark and the Lion Who Did Not Eat Daniel Because the Angel of the Lord Closed His Mouth. This dressing-up was for Bible Character night at AWANA last weekend.

And here we have some pics from our trip to the Pumpkin Patch last Friday, whence Col. Putko told Bryan not to come into work. (I love that guy!)

Taken while on our tractor ride:

Joshua, preparing to be the next tractor driver:

By the sad and lonely sheep and goats. We had planned to go to Wishing Star Farm, which is the Real Deal, but because of the snowy weather in the Black Forest, the road to that farm was impassible. . . In the middle of October. . . So we opted for a pretend-farm, e.g. the "pumpkin patch"--and next year, if we make it to Wishing Star Farm, the kids will feel as though we've traded up.

Ah, the hay slides! Kids loved them! I think Bryan kind of did, too.

A Look Inside

2009-10-28T12:25:00.004-06:00

Time for some girl talk.

But this is also for you men, because it will provide a window into the American, middle-class female psyche that might well change your world.

What I'm about to post is not just an Amy! thing. I'm pretty sure a vast number of women in my demographic, at least, would find a lot in common with what I'm about to reveal.

Interested yet? Here goes:

I think women go through various stages of relating to their own looks. And I'm not just talking about bodies, but the whole package. The person she sees in the mirror, both dressed and un-dressed, hair done and un-done.

It's not just the past few months that have precipitated my thinking about this. I've always found it to be a really interesting topic because I notice that men don't really have stages like these.

For instance, when I taught college Composition, I'd always ask a Question of the Day as the students filed into the room each morning. A little something to get them talking, get them thinking. One day I said, "You do not have to answer this question. You are free to refuse to answer. I refuse to answer it myself. The question is this: How much do you weigh?"

And, as I had predicted would happen, the guys all answered--without hesitation!--and the women did not. Until the last one walked in--she was usually almost late--a tall, thin, very pretty party girl type. I posed the question to her as written above and she said, "110, baby!" and kissed her fingers before slapping her own butt.

So there was one exception.

My point being that I'm not writing out of a one-breasted obsession. I've been obsessed with the subject for a long time.

The stages, I think, are these--though maybe there are more, but there are at least these:

1. Pre-22 stage. The teens-into-college-freshman 15 concerned-who am I?-stage. Let's not even talk about this stage. It is what it is. It was what it was.

2. Then we kind of become adults. In our 20's. Our worlds get bigger. Our responsibilities get more serious. Some of us get spouses, or at least a pet--something to take us outside of ourselves. We get real jobs, and get to know real people who are living real lives--a lot of times, lives much harder than anything we'd ever known.

And the men around us kind of start to grow up, too. They start to realize that looks only count for so much, and they start to pay attention to to qualities like, say, personality and intelligence. And then, interestingly, those of us who always had lots of personality and intelligence, see our stock rise.

But all the while, the voice within that's looking at the woman in the mirror is not saying, "Damn, you're gorgeous." It's saying, in the words of Springsteen, "You ain't a beauty, but, hey, you're all right."-- and it was all right, because you see that life is about so much more than how you look. Your life. Other's lives. The person you fall in love with. The marriage you build. All these massively important and wonderful things find the question of physical beauty to be largely irrelevant.

Meanwhile, that husband who loves you is continually mystified that all the lovely comments he gives you don't seem to count for very much. Why isn't his voice louder than the one in your head? I guess it's because you figure he has to say those things. Or that a big part of the reason he says them is that he's simply blinded by love. . .

3. The next stage happened for me in the mid-20's. I found myself hiking with friends. And coaching a 7/8th grade boys basketball team and, because our numbers were so few, actually playing on the court with them and running lines against them.

Gemma came along after this and with all the physical activity of these few years came a new realization: A body is not just about form. In fact, it's a lot more about function. You get to this point and suddenly the size of your jeans doesn't matter nearly as much as whether you can play outside with your kids all afternoon and still have the energy to cook dinner.

Then you, I don't know, break your ankle, or something, and experience several weeks with dramatically reduced function and you promise yourself, "I will appreciate my health from now on!" and you tell that voice in your head, that is still not thrilled with how you look, that it just needs to shut up because you happen to be enjoying your life a lot.

3. Thrown in there, I think, I hope for most of us, at some point, is the place where you stop counting calories and playing that game with the scale--you know, the one where the scale tells you whether you're going to have a happy day or a bummer day--and instead really tune into your body and discover what food makes it work well, what foods makes you feel crummy, when you are filled up, when you should eat something.

For me, this really happened with the sugar allergy thing almost 3 years ago. And I am so thankful for it.

4. And then, the next stage. The one I just reached 3 days ago. Here I am, at a place of pretty grim physical decimation. The body, the hair, the loss of eyebrows and eyelashes, the palid skin, the reduced muscle tone all over. I'm a real mess at the moment.

I brought some negatives in to be developed. Do you remember negatives?

I had to use them to make baby photos from Josh's birth, back before my mother went digital. And, to boot, I had to develop one of those instant cameras from my trip to Hawaii to see Parin, back in November of 07. (Isn't that pathetic, Parin??? Finally!!)

I got the photos back. There I was. In Hawaii. A "recent" picture in that it's what I looked like just before the diagnosis--hadn't changed that much in 1 1/2 years. And I saw this woman in the photo and thought, "Wow! I am so pretty!!"

In my normal state. The state I'll be getting back to in a few months. . .

Bryan looked at me like I was just. . .crazy. Has he not been telling me this for about 12 years? But that little voice just wouldn't believe it. Until 3 days ago, when I saw it in contrast to what I'm living with now.

So. I think this all totals up to a solid piece of advice, for those of you who would also like to get to this 4th stage:
a) Take a photo of yourself.
b) Get an illness that will leave you temporarily disaster-ized.
c) In the midst of your low point, look at that photo.

Then you, too, will appreciate the great height of your own beauty. And when you get better, that little voice will be gone and you will be free to enjoy yourself just as God's made you.

And this will probably be a very nice relief for the man in your life as well. . . .

Round 5, Day 2

2009-10-27T15:41:00.002-06:00

Chemo yesterday went well. I really enjoyed my appointment with Dr. Markus. I haven't commented much on how we appreciate him. He's a very compassionate person who seems to have all the time in the world to chat throughout the appointment.

Yesterday, he walked in and I put down my crochet project. He remarked that he'd learned to knit when he was a child, but never got into crochet. This lead to other handiwork discussion and he disclosed, "Embarrassingly, I'm the one who sews in the house. When the kids need something fixed, they know to come to me."

I said, "That's not embarrassing!" and told him the story of a Navy birthday ball Bryan were at. We sat next to a SEAL and his wife and Bryan got to chatting with her about his Fall pie baking, how he'd just finished the pumpkin and was about to start on the apples.

She told us, "This macho husband of mine brought a mum plant home from Home Depot yesterday and swore me to secrecy because he felt like a sissy and here your husband is bragging about his pie baking!"

And the SEAL said, "I told you not to tell anyone!"

So, then, Dr. Science. Yes, I like him a lot. He asked about our plans after Bryan's retirement and Bryan mentioned that the plan had been to head to MO, but now we were looking to stay here. Immediately, Markus said, "Will you be near St. Louis? I have a colleague with a terrific practice there. Do you want me to look into where you could go in Kansas City?"--and he was genuinely concerned. Said it was "so sad" to have to see people change life plans because of medical issues.

I said, "Nope! I'm happy to stay here!"

And Bryan is definitely getting happy about it, too. . .

I asked, again, about his family history, and he's just not on it. I told him, "You know, Dr. Markus. Your parents are going to die one day and then there will be no one to ask."

He said his mother has put it all on 4 CD's and counting. So I guess he doesn't need to ask now. And I guess the rest of us will never know.

Chemo got started an hour late. I never know why there is a delay. . . But it all went well. I feel OK. Everything it is yet again a little worse this time--more stomach cramping, more fatigue.

But what's different is that this feels like the last 'real' round. Sister #3 will be here for Round 6, and that will make a big difference. Plus, with Round 6, as bad as I may feel, I'll know that it's the last time I'm feeling that bad! So Round 5 therefore feels like the last regular round.

Went out with 2 friends this morning and had a great time. We first dropped the kids off at Betsy's and even Amber, the friend, noted, "They settle right in, don't they?"

Yes. As though they own the joint.

And Josh is pretty thoroughly potty trained! Goes number 1 AND 2 out in public, which is kind of my standard for determining the level of thoroughness. . .

Ate feta cheese the other day to no ill effect! Ate a piece of Swiss cheese yesterday to no ill effect! Had two small pieces of brie today on my salad at lunch and might be a little off from that. But I am hopeful! Perhaps cheese can be a part of my life after all!

Very good news, because I would very much like Sister #3 to make Gramma's Stuffed Shells for us when she's here. . . .

Sparks!

2009-10-26T05:00:00.000-06:00

I am writing this on Sunday night, to be posted on Monday morning. I won't blog live from the chemo barn this time because I'd rather spend the time crocheting, reading and talking with Bryan.

But I'll take copious mental notes and if anything really interesting happens, I'll be sure to report it to you on Tuesday.

For now, let me tell you about my Sunday afternoon:

I went to AWANA today! I signed up to be a leader for Sparks, the K-2nd grade level that Gemma started this year, and completed the training for it. But because of my treatment schedule, I knew I'd have unreliable attendance this semester at least, so I wasn't actually slated into a position.

It had been my intention to avoid AWANA on the Sunday after chemo and Sunday right before a round because of germ issues. But one each one of those middle Sundays, I've always felt so crummy and/or sick!

So, even though tomorrow is a chemo round, I went anyway.

For those who don't know, AWANA stands for "All Workmen Are Not Ashamed"--from a verse in 1 Timothy that talks about knowing the Word of God well so that when various moments arrive, you'll have the answer you need.

This is a Bible memory club/organization. Kids wear a uniform vest for each level, and as they memorize Bible verses, they earn patches and gems to put on those vests. The meetings are filled with games and story time and the year is filled with extra fun like skate parties, grand prix rallies and dress-up nights. (Tonight was Bible Character night and Gemma was a mouse. You know. From either the 6th day of creation or Noah's Ark, take your pick. . . .)

Gemma loves it. So does Josh, who is a Puggle. (Did you know that a puggle is a baby platypus?) He doesn't have verses to memorize, but they have a curriculum in his room, too.

As for me? I was so glad to finally get to a meeting! I went with the plan of just hanging around and looking for ways to be useful. I'd told the Sparks leader ahead of time that I couldn't be in one of the small classrooms with the kids because of germs, but that I could stay in either the big story room or big game room.

And lo! In the story room, they started singing "This Little Light of Mine," with no one to lead the dance motions. So I ran to the front and did them. (This is a big deal for kids: to have motions to go with their songs.) And then I made up motions to go with the other songs we sang.

Sparks also do a little mini-cheer for each award that is announced. I got to lead that cheer, too! And I turned off the lights for the candle-in-the-pumpkin object lesson, and I passed out the pumpkin cookies. . . All of this 3 times over because all the Sparkies rotate through as 3 groups.

What fun.

Parin once told me, as she watched me facilitate a pinata-busting, "You missed your calling! You should have been a cruise director!" Sometimes I think she's right. I just love leading folks in the fun stuff.

But what was best of all was actually being a helpful, useful person. It's not that I was a spectacular servant before chemo began, and that I got knocked off my game by it. But since the surgery on 23 June, I have been on the receiving end of help, and there haven't been too many opportunities to be the helper that I could actually rise to.

Being a helper today just felt terrific. Being with all the other AWANA leaders and children was terrific, too. Our church is a real family to us, and being part of the Body in this meaningful way was good medicine.

PS: Happy Anniversary, Sister #2 and Brother-in-law #1!

Sunday Storytime: The Korean Locker Room

2009-10-25T05:00:00.000-06:00

The following is a story from the Vault. MLQ's comment about being a in locker room got me to thinking about the locker room at the club on Post. Parin and I would go often, on our own and with our girls. We'd swim with them, hit the hot tub with them, then get dressed and go to lunch, all without stepping outside, which made it the perfect winter morning activity.

But there were always many Korean women at the club, which also made it an interesting morning activity. . .

Here’s how Americans operate: You work out. You go to the locker room. Go into the showers dressed. Deposit your clothes on the chair outside your shower curtain. Shower up. Towel-up. Return to your locker. Get dressed. It’s a 7-minute evolution, carried through with an expedient sense of modesty.

The Korean version: Work out. Go to locker room. Undress. Bandy about, naked, collecting various shower articles. Stop to talk to random woman standing next to you. Mosey into shower. Stop by whirlpool spa and talk to ladies sitting in tub.

Shower up. Towel up hair. Drip the rest dry. Take out lotion and moisturize your entire body in front of a wall of mirrors. Amble to and fro among towel stacks, but do not to take one to cover yourself even though the sign clearly states: Please wear bathing suit or suitable alternative when lounging in locker room and spa.

Ladies, tell me, does the Hongul translation beneath this sign read, "If you got it, flaunt it"?

It’s not that I object to naked. I’ve given birth. If I ever had a problem with naked, I’m over it now. Nothing wrong with naked. It’s just that there is a time and place for naked. And 25-30 minutes of post-work-out naked preening is just. . .too much naked.

Stacks of clean, fluffy towels stand in abundance, waiting for use. These women are all thin enough to fit inside one towel with plenty of room for tucking in. So ladies, come on. I mean, what’s with the naked?

Eventually, they do get dressed. They do their hair quite elaborately. They apply a full swath of make-up. And the whole time, they are speaking in Korean, commenting now and again, I presume, that the Americans in the room with them are slobs, and if they could just spend a bit more time on themselves before getting on with their day. . .

Except when Gemma is in the locker room with them. Then they talk about her. At the end of our swim, I take her suit and diaper off, wrap her in a towel and sit her on the bench while I (expediently) get dressed.

The other day, she was waiting for me when a locker door slammed behind her and she jerked her head to the noise. Immediately, she furrowed her brow, slowly re-cocked her head and then jerked it again. This made her smile a bit. Then she did it again and started laughing. Then again. Each time, she made her wet piggy tales slap her face and spray a bit of water. What fun!

The Korean women crowded around her, as always, gently pinching her soft, juicy limbs, wrapping their fingers in her curly locks, cooing, "She's so keewwwt! So keewwwt!! Laughing at her head-jerking trick.

Gemma finally stopped her trick and looked back at them, relaxed. She wasn’t smiling anymore. She was instead asking, with that look in her eyes, "Why are all of you naked?"

Comments on Comments

2009-10-24T13:19:00.003-06:00

Welcome to a new feature at The Big "C," where I'll be commenting on your various comments from the week. I'm doing this because I miss this kind of interaction from The Name Game posts and because I so appreciate the comments y'all leave.

B, G and J Day! My mother commented that it took her a while to figure out what those letters stand for. But we have Mom to thank for this new Friday feature, because she is the one who commented earlier that she loved reading stories about her grandchildren.

I had hesitated writing much about them because I didn't want to be that kind of mother--the kind who thinks there's nothing more fascinating than her own kids. I'd rather be the kind of mother who thinks there's nothing more fascinating than herself. But Mom weighed in, and so you are all stuck with B, G and J stories.

Some Flood stories came in. I realized after reading KQ's comment that--oops!--neighbors who know the neighbor I disparaged in my story are actually reading this, so suggesting that said neighbor had a lover was tantamount to gossip. I've since scrubbed this neighbor's name from the post.

Nor did I realize that KQ thought Sister #3 was like a Barbie doll. You are all dying to know, now, what Sister #3 look like and/or what prompted a comparison to Barbie. Sorry. You'll have to ask KQ to expound.

MLQ e-mailed a Flood comment--that the same neighbor I disparaged a) hogged sandbags and b) posted a "No Wake" sign in their yard.

Could they have posted it as a joke? Sure sounds like a joke. . .

MLQ also reports about Pink Month in Pinehurst, NC:

"(T)he Spa at Pinehurst offered free treatments (facials, massages, mani-pedis) to breast cancer survivors and 50% off to their "breast friends" on October 1. Each participant got a goody bag and there was live music and a pink balloon launch - way to kill the birds! I cringed at the thought, but mellowed when I saw how the participants enjoyed it. It occurred to me that the locker room and lap pool were probably more comfortable when everyone had a badge of honor of some sort."

AP!: Clearly, I should be living in Pinehurst. Recall, also, that the policemen there don't give tickets to cancer patients and their families. . .

And the locker room comment gives me an idea for Sunday's story time. I have a word or two to say about Koreans in the locker room.

Also, MLQ explains:

"I understand putting the girls list on hold, but I plan to still add to it as memory serves. . . . Do you remember the Japanese story about folding 10,000 paper cranes? That's what your song lists remind me of. I can't fold worth a dam, or do anything requiring manual dexterity - ask your mother - but I have a steel trap memory. It's my way of participating in your support staff."

Well, thank you for that support. I shall endeavor sometime this weekend to update the Name List with about 4 weeks' worth of submissions.

Parin also had a flood story to share. She e-mailed about the time it rained so much, the sewer on base blocked up and her side of the street flooded. It was just weeks before Jason deployed to Iraq. Just days before Christmas. A disaster, though at least USAA came through very well for them.

She wrote, "The funny thing is that when Sarah talks about the flood she talks about it as an adventure. While Jason and I were dealing with insurance adjusters and clean up people; she was hanging out with all her friends in the neighborhood, going from house to house playing in candle light houses. She got to eat pizza and make decorate gingerbread houses. She still talks about the flood and how fun it was. I hope she always has that memory. And I remember how wonderful our neighbors were taking care of our kids while we dealt with all of the mess."

All of this--both Sarah's fond memories of a tough time, my own fond memories, KQ's. . .--it all makes me very hopeful that Gemma and Joshua will think of these chemo-days as a fun adventure, too. After all, they've spent weeks at Miss Betsy's, where Betsy and Amy make thorough plans to entertain them all day, and they get to spend their Monday's with someone who either plays with them or has kids who play with them. Many mornings, I cannot get out of bed and they get to watch movies until I do. What's not to like about chemotherapy?

I notice, too, from the comments that both Mom and the Adventure, a.k.a. Vonnie, have uploaded photos to accompany their comments. Well done, ladies!

And, of course, this week there was a lot of poop talk. I can now add, to the list of "Un-expected Benefits and Blessings of Cancer and Chemotherapy" the following:

Educated myself and my sister (perhaps others, too?) about a helpful medication for toilet issues.

Amanda also commented on the Venus flytraps. It doesn't surprise me that she had them growing up, nor that her daughter gives them as gifts because Amanda is a great example of someone who makes a literate home.

I, however, didn't even know these things could be bought in this country.

She suggests feeding it ground beef. But I've read up on the plant and all the Internet sites strictly prohibit this practice. They say the fat content will kill it.

Then again, the fat content of beef is supposed to kill humans, too. I eat beef all the time--iron content!--and haven't died from it.

So the Internet sites must simply be hysterical.

We re-potted the plants into 2 different Good Will glass containers, each with a lid, and each a lot prettier than a terrarium. The Internet sites say to keep it humid for them, and there's only one way to make that happen here in Colorado.

Into one of them, we put a piece of pair, hoping to attract fruit flies for the plant to catch. (Sister #2's idea!) The other, we plan to feed only water. We want to see whether the plant actually needs protein to live.

But the pear, as of yet, Day 4, has not attracted fruit flies. Maybe none will come now that it's already frosted and snowed outside? Maybe we will have to do the ground beef thing. If so, we shall do it with courage because it apparently didn't kill Amanda's plants.

Finally, Renee commented that a friend of hers who has had reconstructive surgery says "they" look terrific.

Reminds me of a story the genetic counselor told me when I went in for the blood draw for that screening.

He said he was in a seminar on reconstructive surgery, and was surrounded by 14 other nurses, all female. He sat in the back during the slide show of before and after photos and just kept his mouth shut.

Then one woman raised her hand and said, "I don't want to sound like a pig or anything, but it's not just my imagine, is it? I mean, these women look amazing!"

Which was this genetic counselor's way of telling me, without risking offence by owning the opinion himself, that he had seen the photos of post-restorative surgery, and that it looked pretty great.

Now confirmed by Renee's friend.

And I tell you: That moment with the genetics guy is one I have thought of many times and taken much encouragement from in the following months.

That's the round-up! Enjoy your weekend--I plan to enjoy mine now that I'm feeling great and know that Round 5 is on Monday.

B, G and J Day: Mostly Bathroom Stories

2009-10-22T23:59:00.002-06:00

B:

The exercise finished up on Thursday. I asked Bryan, "Did we win?" --it's a war game, after all. He said, "Sure. . ."

Bryan told Colonel Putko that he had a medical appointment for his allergies on Friday morning, first thing, so he'd be in a bit late.

Colonel Putko said, "Wait. What do you have to do tomorrow?"

Some post-exercise clean-up stuff.

"Don't come in," he said. "Spend the day with Amy! Hold her hand."

Bryan kind of looked at him and then said, "Well. . .thank you, sir. . ."

"She's sick," he went on, "you need to spend more time with her."

This is a direct order from a superior officer. What choice does Bryan have? Colonel Putko. I love that guy!

G:

We pursued potty training in earnest with Joshua this week, and Gemma appointed herself the Quality Assurance Officer.

Joshua will come out of the bathroom shouting, "I did it! I whizzed in the toilet!"

("Whizzed." Bryan is responsible for this word.)

And I will say back, "You big boy!! Great job!!"

Gemma will say, "Let's see if he really did it." And then she'll go into the bathroom to inspect.

J:

Part of this training is an addition to Joshua's wardrobe. Underpants. The one item in the world of apparel that is cuter for boys than it is for girls.

Thomas the Tank Engine briefs. Are you kidding me? So stinkin' cute. I wish they made them in men's sizes. . .

We opened his Spider Man underpants to find that they are not briefs, but boxer briefs. Underpants with legs. And because we have to get a bigger size to fit his girth at the waste, the legs come down almost to his knees.

Joshua put a pair on, checked 'em out and said, "I don't have to wear pants!"

These also have patches of glow-in-the-dark design on them. I held a pair up to the light as I told Josh I had a surprise for him. I had just finished showing him what happens when you take them into a dark closet when Bryan came home from work.

"Daddy!" they both shouted. "Come into the closet!" and they whisked him away, all 3 cramming into the coat closet.

I heard their muffled voices:

"Josh's underpants glow!"

"Wow. That is really cool. . ."

Indeed. What's even cooler is that Josh is pretty much potty trained in the daytime. There has been much rejoicing in the land.

Theme Song Thursday: Ohhhhh. . .Sweet Thing. . .

2009-10-22T05:00:00.000-06:00

Practically any song by Van Morrison would be a great song to listen to on any given day. I wanted to post "The Philosopher's Stone," one of my all-time favorite songs ever by anyone, but it's not on Youtube.

Come on, Youtubers!

Here, instead, is a live version of the ever-lovely "Sweet Thing." He performed it along with other songs from Astral Weeks, one of his earliest albums. I read up on this concert and learned that

a) He led this full orchestral band through several improvisations that night and
b) They had only one rehearsal before performing.

Finally, one of the things I enjoy most about Van is his voice. It's not great. It's in tune, of course, but other than this, he just. . .sounds like Van. And sounding like Van never stopped him from singing. He didn't get someone else to do that job in a band for him.

This means a lot to me because I, while I can carry a tune, sound like Amy!. Granted, I don't perform at the Hollywood Bowl, but I play my guitar at home pretty often as I worship the Lord. And if Van's voice is good enough for him to sing, then I'll keep on singing, too.

Here is the link to the youtube video. It won't permit me to embed it here.

http://www.youtube.com/watch?v=4BYvoH2_XuA

And this is an interview with the man himself, for all you Van Fans out there. Pretty interesting in that it is mostly music industry talk, and Van's experience with it.

The Weekend Report

2009-10-21T05:00:00.000-06:00

Today, finally, I felt 100%. Or at least the chemo-version of 100%. So we have a few days to enjoy before the next round on Monday. The timing is nice because Bryan is in the midst of an exercise and his shift goes from 3 AM to 11 AM, which means he gets home around 3 PM. (Not exactly a strict shift. . .) So this week, we have all afternoon together as a family and then he and the kids go to bed at the same time: 7 PM.

Anyway. I'm ready to report to you on my weekend. Which was really horrible.

The cramping I described from Friday continued on to Saturday and I spent all of Saturday evening and night in the bathroom with you-know-what. So frustrating.

48 hours into it, I called Dr. Markus on Sunday, mid-morning. That's always uncomfortable. It's the guy's weekend.

Not as uncomfortable as severe cramping, though, so ring-a-ding-ding.

To his immense credit he was totally fine with it and didn't sound the least bit annoyed. I described the situation and he said, "This wouldn't be a side effect of chemotherapy, you're too far away from your last treatment. It sounds like you have an infection."

"An infection?" What was he talking about? Seriously. I had no idea what he could be talking about.

"Yes. . ." he proceeded, in a tone that conveyed, "Why do you sound confused?"

I had an infection in my GI tract and "The best thing is really just Immodium."

"Immodium?" What the hell was Immodium? Seriously. Maybe I'd seen a commercial for it once. . .

"Yes. Immodium. And ignore the package that says take only one every 8 hours or whatever. You should take one an hour until things slow down."

Well. OK. I thanked him, he said to go to the hospital for a blood check if I spiked a fever and otherwise call him if I didn't feel better in the next few hours.

Bryan got this Immodium stuff for me. And after just one of them, I felt better. After 2, I felt completely human. After 3, I felt cured.

Of course, it's now 48 hours later and I still haven't pooped.

Oh, I'm sorry. Did you not want to know that?

Who knew there was a magical pill called Immodium out there? Hooray, hooray for Immodium!

I related all this to Sarah and she said, "There are some people whose lives are like this."

"Like this" as in "People who take all kinds of medicine all the time."

And this, I realize, is one of the Top 5 Annoying Things about chemotherapy. Things that, I think, She Who Shall Not Be Named should tell patients about during their chemo classes. Things that, though immeasurable, are really difficult to live with. The thing is this:

I've always been a pretty healthy person. When I did get sick, it was always a cold/congestion kind of thing. I don't remember the last time I've ever had a fever. The only time I have bathroom issues is when I've been food poisoned or, closely related, sugar-poisoned.

It's not that I've been living a life deprived of Immodium. It's that I've never needed it.

Sometimes part of the struggle now is my sheer inexperience with the symptoms. Feeling like this is all just so. . .surprising. I spent the week leading up to the weekend with a right eye full of styes. (4 total, actually, all on the upper lid.) My eye was nearly swollen shut. Extremely painful.

Styes! Who wants to deal with styes??? Especially when the first and last one I've ever had before chemo came around 11 years ago. I am not a person who gets styes.

But. I guess I am. Being that person is somehow an assault on my pride. And you know how pride is. Whatever opposes it invariably makes the Top 5 List of Annoying Things, no matter who are.