Grand Finale

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

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

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..

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

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

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!

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

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.

The Coming Surgery

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.

Radiation: End of a Road

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.

Breast Loose and Sugar Free

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.

Radi-elation

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

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.

Brief Notes on the Last Round

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.

The Long Road

In the last few months, many have asked the "What's next?" question, sometimes phrased as, "You're having more surgery?" Today, I'm fielding all such questions by telling you what I know.

My last round of chemo will be, God Willing, 16 November. I will continue to get the Herceptin treatment every 3 weeks for the remainder of the treatment year--that is, through August of 2010.

I'll probably get 3 weeks of radiation, 5 days a week. I say "probably" because I haven't met with the radiation guy yet, but this is what Dr. Science mentioned. We hope to do this in December so that we'll be done with all this stuff by the new year.

I'll also be taking some kind of drug once a day for 5 years that has to do with the estrogen supply to cancer cells. Something like blocking the e from the bad cells, but flooding my bones with it so they end up very strong, even after chemo. (?) I don't know. I'll be sure to fill you in once I learn about it.

Once the Herceptin is done in August, I'll have an itty-bitty surgery to remove the port. Mayfield says it can be done in the exam room. I look forward to this day because I plan to make a key ring out of it.

Now, early on, I mentioned my genetic screening for BRCa1 and BRCa2 (the unimaginatively named breast cancer genes). I did that screening before my surgery, and got the results back the day before surgery, at which time, I had other things on my mind.

The screening itself deserves a post of its own. Suffice to say here that if it comes up positive, the medical recommendation is to remove not only the other breast, but the uterus and ovaries as well because chances of developing cancer in these places, if one has one of these mutations, are through the roof.

And it's bad news for my daughter and my first degree relatives, and the daughters of my brother.

But my screening came back negative. So no one reading this has to worry.

(Note to sisters, however: You should tell your doctors at your next physical about me. My specific cancer is
1. ductal
2. HER 2+
3. estrogen receptive)

So, yes, thank God, there is not necessarily a genetic mutation lying in wait for Gemma.

I still plan, however, to have my other breast removed. It's very common practice to do a double removal when a tumor is found in one. (A young nurse during the port surgery told me this was her training and she was a bit confused as to why I had one breast. . .)

I asked Mayfield if we couldn't do a double at the time of my surgery. He said he would, but because the removal on the right was supposed to be a radical, including a portion of my pectoralis, and because I was also getting a port installed on the left side, there was reason to avoid the additional trauma of removing the left breast.

Why plan on this surgery now?

Two big reasons, both so big, there's no point in deciding which is bigger.

1. My chances of developing cancer in the left breast are now 4 times greater than normal. I'm 34 years old. Seems like we would look at those years and those odds and think, "It's not 'if,' but 'when.'"

And, sure, there's a chance I wouldn't develop cancer on that side. But do you know what I know for certain? I do not want to do this again.

No breast is important enough to chance going down this road a second a time.

2. The current state of my body--you know, being one-breasted--is pretty unacceptable. It's a disaster. It really is.

When a man goes bald, and has some hair, that hair can still look good. The head can still look handsome. I do not look at my body and think, "Well, you've got one breast. . ."

It's like. . . It's like a hand of beautiful, long nails, painted perfectly. Except for the pointer finger. That one's missing its nail and there's a scar running across the nail bed instead. There's no looking at that hand and thinking, "Don't those 4 nails look nice?"

Not that I'm explaining anything to you all because I feel the need to. No, unless you're missing one or 2 breasts or are married to someone who is, your opinion on this matter does not count.

I think I'm writing it all down because my kids will read this one day. And because a year from now, I may want to know my own thinking as of October 2009.

In any case, as I say, the current state of affairs is not, I dearly hope, a permanent state of affairs.

So I look forward to reconstructive surgery, which I shall call henceforth "restorative" surgery.

And what, I ask, is the point of being restored on the right side to the age of 20 or so while still being 34 and post-nursing-2-babies on the left side? That would be disastrous in its own way, no?

I say: go for the matching set. Guarantee your life as breast cancer free.

Back to the question of "what's next?"--at some point after radiation, my body will start to heal. When we deem it strong enough, I'll have the left breast removed. I'm not sure if this can happen while I'm getting Herceptin, or how long after chemo I have to wait, so the timing is uncertain.

And then, at some point after that surgery, we'll meet with a plastic surgeon and learn about our options for restoration.

The road stretches long. . . I wonder if I will blog the whole time?. . .

Wellness Update

Whoah.

Last time I felt pretty OK after chemo and on Day 2. I exercised both days and did the grocery shopping.

This time, about 2 hours after the last drip, the fatigue started.

For a while I thought, 'No, this can't be. I'm just being a wimp. This is half in my imagination. I'll be fine for another day.'

And then a little voice inside my head asked, "Why be a hero, Amy?"

So I called Betsy and Bryan dropped the kids off there this morning. He'll bring them home on Friday.

Gemma was a little bothered by it this time. She was excited to go, but still had a real Mommy moment. I told her that I didn't want her to be home with me because I would be cranky with her and would have no energy to do anything fun with her, and that I thought it was a better idea for her to be with Betsy and Amy all day who would have lots of energy to spend on them and who would be loving and not cranky.

Gemma saw my point.

Here is another example of the Lord's timing: Bryan begins his Retirement Class at the Air Force Academy, which is 5 minutes from Betsy's house. It goes from today through Friday.

The Burch family suddenly have a huge painting and flooring project on their hands that must be finished soon in a property of theirs. Bryan is a handy guy. So after his class, he'll go to the Burch house, eat dinner, change, and then go help Terry and TJ (that's Betsy's husband and son) paint like crazy. And because the kids are over there, I won't need Bryan too badly here! How perfect is that?

As for me, I hardly slept because the stomach cramping was so bag. The first bag of drugs was an anti-nausea med, and in the first round, it lasted long enough for me to fall asleep that night. This time, we got started a lot earlier and it wore off earlier, and according to my instructions, I can't take anything really effective until Day 2. I'll have to ask about that next time--e.g. whether I hit the hard stuff late on Day 1.

So, I'm exhausted right now, the kind where you feel almost hyper-active from it.

BUT! No responsibilities other than to rest! And my friend, JenJen (so nick-named by Gemma, whom she now calls GemGem), is driving me for today's white blood cell booster shot. So all is well enough.

Search and destroy, guys. Go get 'em.

The Thinning

It began last night in the shower. One hand through the hair before I shampooed. Out came many strands. We all lose a few hairs each day, in each shower, right? Tried the other side. Many more strands.

I had the option of waiting a day or two or three more. Maybe even another week. But this afternoon, I shaved it off. This, for several reasons:

1. My hair really hurt. You know that feeling of letting your hair down after it's been pinned up all evening? (Sorry, male readers. You'll have to choose to believe the women in your life on this one.) Your hair is sore after that, right at the root. For a few minutes, at least. My hair was feeling like that all the time.

2. Why delay the inevitable if it means dropping hair all over my house? The Merry Maids came today, and I was mindful that everything had just been vacuumed.

3. It's really annoying to pull out so much hair while in the shower. There it is, in my hand. Can't send it down the drain. So I twist it up so it holds together, then drape it over the shower handle where it awaits being tossed into the trash afterwards. Repeat. Shampoo. Takes at least 6 swipes through to rinse all the soap out, each soap yielding another handful. Twist each one. Drape each one.

It was the longest shower of my life!

I now look like Natalie Portman in V is for Vendetta.

But soon I'll look less like her, and more like someone else. Though without the hat.

Speaking of which, I do have a cute little hat to wear that a friend gave me. And a wig or two. Photos of those are forthcoming, but I need to wait until all my hair is gone lest the natural hairline throw off the whole look.

I'm not too bothered by all this. I've had a few emotional moments--just more grief--but now that the deed is done, I figure, "Eh." The real bummer of it, for me, is that I feel marked as a cancer patient. Just today, I was chatting with a grandmother (whom I'd just met) as we watched our kids play at a park and she was going on and on about the foot problems she'd been having. I thought to myself, "If she knew about me, she'd not be telling me all this. Or maybe she would, but would do so comparatively. As in 'Of course, it's not as bad as what you're dealing with.'"

And I find that I pretty much like not being thought of a breast cancer sojourner by total strangers.

Hey! "Sojourner" as opposed to "warrior"? Hmm. . . )

That's what a wig is for, I suppose.

The other comfort is that it will grow back. Unlike certain other parts recently cut off of my body.

I saved some hair in a little baggie so I can compare color with the new growth. And I asked Gemma what color she thinks that will be. Purple? Blue? She's hoping for pink.

Anatomy of a Choice

If you’ve read all of “The Medical Story” posts, you know that early on, we had a Big Choice to make. Should we do surgery or chemo first?

I’ve written without much description that we knew how God was leading us. I want to explain more about that for 2 reasons: 1) I want my children to know and not wonder, years from now, what I was talking about and 2) A few people have mentioned that they wonder what I was talking about.

So: surgery or chemo first?

We chose surgery. We chose a very radical surgery that, we were told, would leave me permanently deformed with a caved-in chest, without strength on the right side, with nerve damage that would limit my range of motion and let my scapula wing out sometimes, and with a cancerous lymph node stuck under my collar bone.

Why surgery?

1. From the beginning, it appealed to my common sense. I knew that the advantage of chemo first is prognostic—e.g. we can see if the tumor responds to treatment and so know for certain that all the cells we can’t see are responding, too. But leaving a tumor and cancerous lymph nodes in for longer than necessary seemed. . .dangerous. Even though statistics show that it is not.

So, from the first, this was my bias.

2. One of the first things I learned about breast cancer is that everyone knows someone who’s had it. For as much as statistics show that the outcomes are as good for surgery first as they are for chemo first, every single story I heard of a breast cancer patient featured

A) a woman who had surgery first and survived, or
B) a woman who had a lumpectomy and then had to go back for mastectomy and chemo, or
C) a woman who had chemo first and then surgery and then, sadly, the cancer came back.

Every single story. And I’d put the number of stories at 30. At least.

I didn’t hear one single story that featured a chemo-first patient who was now cancer free. (Or, in the case of one good friend, a child who endured several additional years of cancer recurrence and chemo before finally becoming cancer-free.) Statistics show that there are as many out there as surgery-first patients who are now cancer free. But I didn’t hear about any of them.

This is what we took to be the first super-natural leading. God speaking through circumstances of whom I happened to be meeting and which cancer patients they knew. Not a big thing. Not enough to base a whole decision on. But it was part of the caseload.

3. When we met with Mayfield for the first time, we concluded the appointment by scheduling the surgery for the following Friday. We were in no way locked into it. I felt completely free to cancel it, or make it a mere port installation. But I also felt a great peace about it. No misgivings at all. Plenty of grief, sure. But not even a slight inclination that maybe we shouldn’t.

We took this non-anxiety to be supernatural as well. We believe God is real and that He loves me and wants to see His will done in my life (even if that includes deformation and other side effects). If this wasn’t cool with Him, I expected the living God to tell me or us with some kind of emotional content: anxiety, disease, non-peace, unsettledness. But we experienced none of this.

4. As I thought and prayed about the choice, Biblical examples kept coming to mind of “cutting out the cancer.” Most days, I read a children’s Bible with the kids and during this time we “happened” to be on the part where many Israelites were put to death because they’d led everyone to idolatry.

And in my own reading of Acts, I “happened” to get to the story of the two fakers in the early church who tried to pull off fraud. God struck them dead. Aside from the places where I was reading, other Bible stories came to mind, and all of them had a certain theme: Don’t mess around with the trouble-causers. Cut the trouble out.

Now, there are also plenty of stories in the Bible that describe redeeming the trouble. It’s definitely God’s character to re-claim what has been spoiled and make it good again. Maybe if these portions of scripture had come to mind and our attention, we would have had to think about whether God was leading us to allow the chemo to re-claim my body from the cancer.

But these portions didn’t come to our attention. Again, we took this as more leading towards the surgery option. It’s important to note that this wasn’t Russian Roulette with a Bible—e.g. Flip open to random page, see what’s there and interpret an answer from it. These examples were what came to mind as we prayed, and what were already on the page we were already reading at that time. Was this God’s timing? That we should happen to be at those portions of scripture on those days?

Why would we think it wasn’t God’s timing?

5. A week after our first appointment with Mayfield, we had our second. The pre- surgical consult. We went in ready for mastectomy, knowing that the MRI showed the muscle had cancer, too, knowing he’d cut out a hefty portion of it.

Mayfield launched into a very serious talk about how serious this surgery was.

OK. . . We knew this already. . .

Then he told us that for the last week, since first meeting us, he hadn’t slept well. He’d had disturbing dreams. That there’d been no good rest because he couldn’t stop thinking about me and my children. He would read Scripture to help ease his mind enough to sleep. His wife, obviously, noticed the distraction and had started praying for him and for me. Finally, he told us that in the case of most other patients, he’d actually recommend chemo first. But that he really thought we needed to do the surgery, as hard as that would be.

I asked, ‘Do you get like this with everyone?’

And he looked at me with disbelief. Did that question even make sense? He’s a surgeon. He’d be dead by age 40 if he bore this much angst over everyone. “No,” he said, “That’s my point.”

“Well. . .” I began, “Are you leading up to some extra terrible news? Because we’re already going to do the surgery.”

No additional news. Why had he given such an intense plea about his disturbed sleep? He just really thought we needed to know all of this.

Okedoke.

We left the office in great spirits. I remarked to Bryan that of all the side effects Mayfield had described, the one I really wanted to avoid was the arm swelling—a potential effect of removing the lymph nodes. I said to him, “Let’s pray against that one.”

10 minutes later, Dr. Markus, the oncologist called with news: He was looking at the detailed pathology report and mine was the kind of cancer that is very responsive to the H protein. So we could do chemo starting next week, shrink this sucker down, maybe even do breast conservation surgery in the end, but almost definitely avoid the “terribly morbid” surgery that would take my muscle as well as breast.

The lymph nodes would still come out after chemo. This means I’d still be at risk for arm swelling. That’s key. If we had left Mayfield’s office, and I had remarked to Bryan, “I just wish there were some other way. Let’s ask God for some other way” and then gotten the call from Markus, maybe the decision would have been different.

Instead, I had very specifically said that the only part I really wanted to avoid was a swollen arm for the rest of my life. And the option that came in 10 minutes later, while offering to change a lot, would definitely not change my risk for a swollen arm.

I told Markus we would call back after talking about it.

This chemo option was tempting. Are you kidding me? Not losing my right pectoralis? Possibly conserving my breast? Of course it looked good.

But, but, but. We had been praying—and others had prayed with and for us—for discernment and wisdom. That we would choose what God would have us choose. What did we expect His help to look like? Writing in the sky? A letter from God in our mailbox? He’d given us scripture, circumstances and a believing-surgeon who had just given a passionate recommendation for surgery even though at the moment he was giving it, we weren’t even thinking there was another option worth considering.

What were we to do with all of the above input? And the absence of any input recommending the chemo first option? Could we write it off? Could I say that, given my bias from point #1, all the rest feel into place because that’s what I wanted/expected?

Yeah. I could have said that. But then what does that say about my alleged relationship with the living God? That He let me fake myself out? That He let me receive as His leadership something that was really just a psychological mistake?

I thought of Lot as we ate lunch and talked about this decision. I specifically mentioned him to Bryan. The famous Lot who enjoyed success and the same kind of wealth as Abraham did. And eventually, their flocks were too big to share space, so Abraham told him: You pick a region and I’ll go the opposite way. Go ahead. Pick.

And Lot “raised his eyes and saw with them” that this one direction was good and fertile. He chose it. This was his pattern for the rest of his life, to walk by sight. He might have had one foot in God’s kingdom some of the time, but all of the time, he had his other foot in the world and he chose according to what looked good and right to him. Of course, this is a life that ended in tragedy.

I told Bryan I felt a similar temptation as Lot did. Look with our eyes and we see the possibility of a healthy breast in the future, and at the very least, an avoidance of a severe procedure. With our eyes, one direction looked good.

But faith is being sure of what we hope for and certain of what we do not see. We’re certain that God is powerful enough to lead people as stupid as we are in the way we should go if, in our hearts, we truly welcome that leadership. We’re sure that God’s version of what my life should look like is the best possible version, even if it includes deformity following a bummer surgery.

In those two days before surgery, I was a wreck. A good portion of this was due to my sugar reaction to the radioactive glucose and the rough recovery from it. But a bigger portion was the sheer sadness over the coming surgery. This all was probably even harder on Bryan, who, of course, couldn’t do much to help. He kept saying, “Babe, you don’t have to do this. If you’re not feeling a peace about this, we can reconsider.”

And I kept telling him, “No, that’s just it. I have complete peace about this, which is why I know it must happen, and it just sucks that this has to happen.” I can only describe the actual feeling of those few days as being pressed. Being absolutely wrung tight.

But scripture promises that His joy comes in the morning. The morning came pretty quickly for me, didn’t it?

Praise be to God, for the miraculous surgery that left my muscle behind and pulled that last lymph node out. Praise Him for being the Good Shepherd in our lives. Praise Him that His staff is with us every day, and not just on the days when the Big Choice is before us.