Saturday, July 18, 2009

EK Gee...

I went for an EKG on Friday. It's really just an ultra-sound of the heart. No different, from the patient's point of view, from the ultra-sounds I had done during my pregnancies.

I was able to see my heart beating, and my valves flapping in good order. Do most patients talk during this procedure? What does it say about me that I couldn't keep silent?

So I asked the guy, "Is this the only test you do here?"

No, he also works with pre-mature infants often. With children. But whatever he does, it's the heart. 8 hours a day. But it doesn't get old for him because "every heart is different."

I don't believe that was the whole truth. It must get old sometimes.

But I had other questions: "After looking at all these hearts, do you have perfect health habits?"

No, not really.

"You mean you don't think twice before eating a cheeseburger?"

Well, he hadn't eaten fast food for 6 years.

What???? Dude, that is a health habit. It's the only health habit we need to end the obesity epidemic in this country.

He went on to say that he didn't pay attention to anything in his 20's. He smoked. Ate whatever he wanted. Drank often. But at age 32, he finally got his cholesterol checked--it was high, and his blood pressure was creeping up. So he made some changes.

The point of my questions was to guage whether "doctors heal themselves." Do those who see health issues up close take care of their own? It seems like they all should. They know what good health looks like, and they have to look in the mirror a couple times a day.

Their special knowledge is partly why medical professionals have a special power to thrill. What am I talking about? Something I noticed back in October, when dealing with the ankle surgery.

Dr. Tokish--who was a terrific guy, very personable, a very talented surgeon--told me at my last post-surgery appointment that he recommended I leave the plate in for the rest of my life.

I looked at him, then down at my ankle and said, "But I can see the plate when I flex my leg a certain way. I can feel the plate and the screws with my fingers!"

Then he said, "That's because you're skinny."

Then I said, "Oh! What was that? Could you say that again? Just that last part. . ."

A special power to thrill. More powerful than I had even known. . .until a post-surgical appointment with Mayfield, whence the three of us (e.g. Bryan was there) got into a conversation about reconstructive surgery.

Mayfield was describing one version that included taking muscle from one part of the body and re-locating it to another. And I'd be a "perfect" candidate for it because I didn't smoke, I'm young and I'm thin.

And I was like, "Oh! What did you just say? Can you say that one more time? Just that last part."

There I was! Sitting with just one breast and a scar slicing across the other half of my chest, feeling like someone had just mistaken me for a CoverGirl model.

Does Bryan have this power? No. Doesn't matter what he says--and he pays a lot of compliments--because a) there's always the probability that he is blinded by love and b) he is intensely self-interested in my feeling good about myself.

No, the power can only belong to a person who has no vested interest in the emotional result of the statement and who knows what "too much fat" looks like.

Doctors and nurses--medical professionals who know what good health is and who have the obligation to tell you when you ain't got it--are such people.

But here I have to be completely honest: I'm pretty sure the power is only about good health as it relates to what I look like. Because when the EKG guy explained that he'd send the results to the cardiologist for a reading, and that from what he saw, my heart looked to be functioning perfectly, I said, only, "Sounds good. Thanks!" And then left the room with no special thrill at all.

Friday, July 17, 2009

The time finally came yesterday to show Gemma what was different about Mommy. She asked a few questions about the "why" and "how," was pretty satisfied when I told her that it was this or death, and now Mommy wasn't going to die from cancer.

It was a brief discussion. She's moved on. Couldn't care about what Mommy's shirt looks like.
And the whole life and death discussion is not what my post is about.

My post is about how Gemma is so dang pink. I had wondered if she'd be bothered to see me, because she is all girl all the time, and I wasn't sure how that translated, for her, into body image. Now I see that, for her, it's irrelevant.

She did ask if I would wear headbands once I'm bald so that "People will know you are a girl."

No. A hat, probably, when I'm outside. "And I'll be wearing make-up," I assured her, and this, truly, seemed to comfort her concern.

When my ankle was broken, I wore dresses because they were easier to put on. One day, as I hobbled down the stairs, she asked with great eagerness, "Once your leg is all better, will you still wear dresses???"

When she learns that we're going out to eat, she seizes the opportunity to get dressed up. Bryan often buys her random pieces of costume jewelry from estate sales and she wears them. Not just in play. She wears them out.

On one level, I am mystified: Where did this child come from?

On another level, I am very happy for her. That she can enjoy these girlie things so freely. That it comes so naturally to her whereas, what little girliness I've come into came kind of late and not all that easily.

And on a new level--one just recently discovered--I find her kind of inspiring: a reminder that femininity, which she has reveled in since before her second birthday, is about the heart and not the body. What a perfect little girl for me to have around.

* The photo on the left was taken during our May trip back to IL. Gemma had a "dress up night" with my sister, Aunt Leslie, that was, for Gemma, the highlight of her whole trip. The big difference between what you see here and what you'd see in our home is not just that the woman holding her has a tan, but that the stuff they are wearing is all real.

And, of course, this photo also demonstrates that while the "Girl" gene may not be amplified in me, it is elsewhere in the bloodline.

Thursday, July 16, 2009

Song 10

There was a week between the mammo and ultra-sound and the biopsy and MRI. I spent that week believing that this was the real deal. I figured it was best to expect the worst and not be disappointed.

I've mentioned elsewhere that I spent that week helping with my church's Vacation Bible School. I signed up at the last minute only because I really like the director and she was very desperate. What a fun week it turned out to be! God showed up at that VBS, and every day, even though I was volunteering, it felt like the greatest blessing of all was for me.

For instance:

I was one of the leaders for the early childhood kids games. This was Gemma's group, so she was thrilled to see me in the middle of her morning. (Of course, she was also a little disappointed when I didn't pick her first for the games that needed picking. Back off, you little nepotist!)

On the last day, the game I led was follow-the-leader set to music. The only CD player we could get our hands on would play only the 10th song on the CD.

Song 10. Played 6 times for each group. Times 3 groups for each section. Times 2 sections. I heard that song 36 times on Friday morning.

If I were a very sanctified person, I would have thought, "I'm just so thankful we have CD's and CD players and electricity!" or maybe, "I'm so glad it was a song the kids liked so much!"

But I'm not very sanctified. So instead, I laughed it off on the outside and on the inside, I thought things like, "Oh come on. You're telling me there's no working CD player in this whole church?"

It's true. That's what my ugly, stinking, fleshy heart looks like.

By the time the games were over and my job was done, I didn't care or think much about it.

That Friday night, I was thinking and praying about the peculiar joy that had blanketed me throughout the whole week. It was unreasonable that I'd be "taking it so well." Was this really God's joy, or was it just denial?

But it couldn't be denial because during the VBS worship songs, I would just weep from the comfort I experienced. Picture over 600 kids doing the same dance moves to the lyrics:

I will not be afraid
Though trouble's out there
Night and Day
No, I will not be swamped with fear
For God is always, always, always God is always near

And then picture one of the leaders in the back crying, crying, crying through the whole thing.
So. I don't think I was in denial.

But what if--the doubting voice persisted--this joy doesn't last? How could it? Do you know how long your road ahead is, Amy? Do you know the decimation that awaits you? How could this joy that's been your strength this one week possibly last the whole year?

Then these thoughts stopped cold. Switched off to silence. And I heard in my head:

You are the everlasting God, the everlasting God!
You do not faint,
You won't grow weary
You're the defender of the weak
You comfort those in need
You lift me up on wings like eagles

These words are a few different verses of scripture pulled together. I believe them to be true. And I believe they were the direct answer to the doubts of that voice that had been silenced.

They are also the lyrics of a popular church song. A song so popular they made a kids version of it and put it onto the VBS CD for this year. This song, in fact, is Song #10, that I had heard 36 times that morning.

Wednesday, July 15, 2009

Second Surgical Follow-Up and the Thoughts that Don't Really Follow

This is the fifth consecutive week Bryan and I have taken the long drive down to Ft. Carson for an appointment, and some of those weeks featured multiple visits. It's become our weekly date. And I know that sounds pathetic but a) when someone else is watching your kids and you get to have uninterrupted conversations and a lunch with no one asking for a sip from your drink--even if that lunch is in the hospital cafeteria--it counts as a date and b) really, how many things are all that pathetic in context of a recent breast removal surgery?

Now that I am in week 7 since learning the lump was not a swollen lymph node, I've developed a certain mechanism. It's not a "coping" mechanism because I don't think I'm doing it for the sake of "getting through." It's more of a "stimulant" mechanism to keep myself from getting too "bored" with the process.

And the mechanism is this: I've started to become a little obsessed with completely irrelevant details.

Like Dr. Science's first name. Maurice. Mark my words, people: I will find out how a man born in the last third of the last century came to be named Maurice. Family name? Ethnic name? What are his siblings called? I cannot let it rest. Poor, poor, Dr. Markus. He has no idea how I intend to hound him.

Like Evans hospital and its pens. I have seen the pens in the following offices: surgery, admissions, pre-admission and x-ray and every desk has a flower pot full of marbles with pens that have been wrapped with green tape and a fake flower sticking out the top.

Yes, I know this is to keep people from walking away with their pens. (And in a way, it's such a vote of confidence in people regarding their good will: Surely, people are not stealing pens. They simply aren't paying attention when they stick them in their pockets. So dressing them up to be much prettier pens won't make the problem worse, even though if I had to steal, I know I'd take a flower pen and not one unadorned; but instead, it will solve the problem.)

My question is one of origin. Who made all these pens for the hospital? Candy stripers? Orderlies? Some little old lady volunteer? I asked the gal at the pre-admisisons desk and she said that she and "the others" had a "pen party" one day to make them.

Well. I mean. . . Did all the desk people in the offices I've visited have their own pen parties one day? Did the Army send out a memo to hospital personnel regarding the Top 10 ways to save money? (#1: Stop over-prescribing--you know we give these drugs away for free! through #10: Make your pens into flowers.)

Something else: Mayfield was telling a story several appointments ago that related to drug theft within the hospital and this story included his mentioning some girl he'd dated in college. He said, "She was a Texan. I'm a Texan. So we dated," and then went on with his story.

What?

Who says this? Who suggests that the principle reason to date someone is hailing from the same state? Texans, that's who! I know other Texans, and they are like this. Since hearing this, I've been paging through the mental files of my experience with Texans. It's like I'm trying to build a case against them. I've met many Texans here in the Springs. How do I know they're Texans? They tell me. Most of the time. They are. . . they are. . . state chauvinists.

And don't get me wrong: I luuuuuuv the Texans! This is a quirk and not a fault, to my judgment. But I would like to offer the following true story to demonstrate what those of us from the other 48 are like. (Not 49. Why? Ohioans!! They are like mini-Texans! I should know. I married one and he and his family are like Texans in this way, only to a slighter degree.)

I met one of Bryan's co-workers in Korea who had lived in Illinois. Elmhurst, Illinois. Hello! I had repaired the parkway on the very street where he had lived. He went to Sandburg and then York, so we had no teachers in common. But still! We were from the very same suburb.

And we had exactly one conversation about this before moving on to small talk on other subjects. I saw him often in those 2 years and we didn't bring up the Illinois connection even once. No Illinois wave between us. No secret Illinois handshake. (Don't pretend like you don't have one, Texans.) No longhorn gestures combatted by whatever the Aggies do. Nothing. Because we don't think there's anything super-special about being an Ill-annoy-in.

I can't tell you how often I've rolled this state thing over in my head. Trying to figure if any other state produces people who are like this. (Aside from Ohio, of course.)

These are the things I find engaging nowadays. Surgery? Yeah, yeah. Did that. Healing up well. The minor infection is almost all cleared up. Surgery coming up to install the port? Yep. That'll happen on 23 July--next Thursday. Chemo? Uh huh. Starting 3 August. Got to go to a class first to learn all about it.

But the name Maurice. Now this deserves attention. . .

Tuesday, July 14, 2009

The Chemo Choice

Bryan and I had a really terrific weekend. Mom went home on Saturday morning, and that was kind of a bummer. Then again, she and Dad have never been apart for as long as 3 weeks (wimps!), so it was OK that she had to leave. What a great mother! We're so thankful for her help and her heart.

Also on Saturday morning, Bryan managed to acquire a WWI German mauser with all its original parts. The euphoria of this find has net yet worn off.

On Sunday, we BBQ'd with our whole cul de sac and topped it off with a marshmellow roast. The kids collapsed with exhaustion and I particularly enjoyed being in the season where both of our children are big enough to run with the wolf pack and not need intense supervision.

Are you getting the feel of this? That there was a lot of life-as-usual delight for us? All of which is to say that we are really at peace about this chemo choice, and have not sensed a life-or-death pressure hanging over it.

It looks like we'll go with Option 2. This is for a few reasons that give me a warm fuzzy about it, regardless of the statistical indifference. I did talk to Dr. Markus today. A) The trial demonstrating this indifference was only among post-surgical patients, all of whom were "got all the big stuff out" women (Of course, Dr. Science used the medical term for this, but I don't remember what it is). B) My question, basically, had been "How effective was ACT without the H?" and the answer is, "In comparison to what? Because we have no studies comparing it to something that is relevant to my decision."

So, then, why Option 2:

1. I like the idea of shooting the H protein into the rogue cells right now and not waiting 4 months from now.

2. Option 1, Old School, administers 3 poisons 4 times over for a total of 12 doses of poison. Option 2 administers 2 poisons 6 times over for a total of 12 doses of poison.

BUT I like the idea of giving m body only 2 poisons overall, instead of a 3rd.

3. Old School "A" causes nausea. I would very likely suffer that effect. And then would either have to gut that out or take more drugs to counter-act it. While Option 2 lasts 6 weeks longer, I'm hoping the quality of life and quality of recovery (in terms of fewer chemicals to process) will be somewhat better.

So there it is. I think. We'll call Markus tomorrow with a firm commitment, and then we can nail down a firm start date.

Thank you for praying for us in this decision. We offer it up to God. He'll let us know before it's too late if it's not the right course--a faithful Father indeed.

Monday, July 13, 2009

Etherized Upon the Table

Surgery is a wild experience.

My first one was in October, when I fractured my tib-fib and had a plate with 5 screws installed. This felt like child's play at the time. For as badly as the break hurt (and, because of pre-surgery fasting, I had taken no pain killer from the moment I woke up on surgery day until 4 PM when pre-op started), there was nothing scary about the procedure, nothing but a fixed ankle awaiting me on the other end of it. So I kind of enjoyed the whole experience in the sense that it was so trouble-free and yet so interesting.

And I did learn something about myself that came in handy for my next surgery: that morphine is a bit over-rated. The night after ankle surgery, I got a shot of it every 2 hours. After 2 doses, in the middle of the night, I told the nurse, "You know. This isn't doing anything for the pain. It just makes 3/4's of my body not care that the other 1/4 really hurts. Why don't we skip it?"

He said, "You can be brave in the morning," and then shot me up with more morphine. And 3/4 of me was then warm and fuzzy and not-caring that the nurse had just ignored me.

Altogether, this last surgery was a lot different.

But it was still pretty wild. Like something out of a fairy tale, what with the deep sleeps and stuff happening without your knowing it. There is no dreaming when under. You're just in one place--in this case, an Army hospital pre-op bed sectioned off by a curtain on tracks--and then you're in another place. But by the time you are someplace else, your awareness has nothing to do with your surroundings.

Instead, hearing comes first. But you hear things without any cognition of the context they should fit into. And your brain is several seconds behind making the things you hear make sense. By then, you are hearing something else. I'm telling you: wild.

Here's my record of what I recall amidst the fog:

I was in the pre-op room with the little curtain. Bryan was there, and then Helen, our friend from KC who came to wait with Bryan during the surgery. She has a giant service dog named BroJean. The four of us waited and I was an absolute mess. Not wanting to go through with it but knowing I'd go through with it.

The anesthetist came into my little curtained room and introduced herself, explained what a good job she'd do keeping me under, telling me that Mayfield was her "favorite person in the whole hospital" and that he'd already talked with her about the coming surgery. And, she reported, he had gotten choked up about it.

I don't remember anything after hearing that. Surely other stuff happened. Stuff like, 'Now, Amy, I'm giving you this drug now to make you sleepy." I should ask Bryan and Helen to fill in the time for me. . .

Then, the next moment, which was several hours later, I said, "Why does my ankle hurt?!"

Then other voices, "Ankle????"

Yes. When I make the mistake of sitting cross-legged on a hard floor with my left leg on the bottom, the plate sets my bone on fire. At that moment, having just had a breast and whole set of lymph nodes cut off, my ankle was the only thing I felt. It was like I'd sat on it in that cross-legged position for an hour.

Then I heard Mayfield on my left side ask, "How are you feeling, Amy?"

And I rolled my head to that side, realized I had this plastic mask on my face and thought, 'Why is there a mask on my face?' and said, "Unhhh."

He said, "I got the licence plate of the truck that hit you."

Then I was being wheeled out. I opened my eyes for the first time and saw Bryan, David and Helen and a dog. A dog in a hospital? Oh. Right. That's BroJean.

Then I was in a room where Bryan was permitted and Mayfield said something about morphine on tap. I waved my hand at Bryan and said, "Tell him about the morphine!"

Folks, does it ever happen that a spouse gets the story right when telling it for the other? I was powerless! So fogged up in the head. Had this oxygen mask on that prevented me from speaking well even if I could have managed some words. I was thinking, "Oh please get this right, Bryan. Please know what I'm talking about!"

And he did. He dispensed with the comic timing, of course, and that crazy nurse's little slogan about bravery. But he made the point: Morphine didn't really do the trick for Amy last time.

I heard Mayfield say to hook up something else. And then at some point soon after, I was given a magic button! Just press this and you will feel better. See? Like a fairy tale.

Things cleared up bit by bit. The context was pretty well filled in, and my eyes were open. I was very concerned about being in the ICU, and knowing only that something had gone wrong with the port installation. But right at the moment when I was about to freak out about it, and I was asking Bryan what exactly had happened, Mayfield came back in and I had the awareness for him to explain it. Ended up being no big deal at all, as we know.

Later--days later--I asked whether I'd been turned onto my left side at some point to expose the right side better. This would have explained why my ankle hurt so much. Mayfield just shook his head and kind of laughed. Nope. On my back the whole time. "But that's the first thing you said. We were all like, 'Did she just say ankle?'

Chalk it up to the mysteries of ether.