A Little Bit Country, A little Bit Rock & Roll

Had my clinic visit today. I felt like hell, yesterday and today. I had a pretty high fever last night--bad. But it was back to normal by this AM--good. Which means that I obviously have some white cell action goin' on. But I was hurtin' most of yesterday.

Which brings us to today's clinic visit. Today at the clinic was my big day to get my chimerism testing done. We'll find out the results next week. What's a chimera? For all the non-X Files fans out there? A Chimera in genetics is defined as a single animal organism with genetically distinct cells from two different zygotes. As you may have surmised from all of my screeds regarding donor stem cells, I am currently a chimera. Some parts of my body reflect my own DNA, some others reflect the DNA of my donor. (Do I have any special crime opportunities as a result of this, I wonder?)

So how did we find ourselves so soon at this august moment of chimeritude? Simply put, the whole marathon that is a stem cell transplant can be broken down, for practical reasons, into 6 stages.
Stage 1. Do Not Get Infection Before Transplant.
Stage 2. Survive the chemotherapy regimen (via minimal infections, fevers and reactions)
Stage 3. Day +13ish, see if your counts are coming up. If they do, your donor's cells have engrafted. You're on your way! If they don't, see your doctor for advice.
Stage 4. Chimerism testing. Test what percent of the DNA in your blood cells is donor vs. recipient. You want it to be 100% donor. If it's more like 50/50 "then we need to strategize what we're going to do about that," said my doctor, not filling me with any sense that even 75/25 would not be a complete disaster.
Stage 5. Assuming you were summa chimera laude, feel glad. Then watch for the next 6 months for any sign of the dire Graft Versus Host Disease.
Stage 6. Assuming you were out that day when GVHD dropped by, celebrate your one year anniversary. Begin plans to get your immunizations. Start allowing yourself to dream of having a normal life. Meet your donor and buy her a drink. Meet your friends again! Meet their kids born last year! Thank God that you and your miscellaneous DNA lived to tell. Now go buy shoes and cosmetics and worry about the price tag later. After all, you've already spent a million-plus becoming the spokesperson for Chimeras R Us (a role that denies you the wearing of cosmetics and the public places in which to unveil your fantastic footwear); you might as well splurge a little bit for Jimmy Choo and Shu Uemura.

*********************************
*Wee serious note: If you are inclined to offer thoughts, wishes or whatnot for people with any kind of belief that such offerings may have an effect of any positive kind, I'm going to offer my support for said thoughts and wishes....blah blah blah...what I'm saying is that I really really need my chimerism test to be as close to 100% as possible. Otherwise, I'm a bit reluctant to hear the "other options" available, one of which might involve doing the chemo/transplant thing again, which I don't need to tell you is so very really desperately exceedingly not something I want to relive. My deal is this: I'll do all the bargaining with God if you do all the genuine, real-stuff praying. Between the two of us, I can't see us getting less than a B-. :)

Enough About Me; Now Back To Me

I just got dinged via email by a couple of people worried about me because I haven't posted much recently; and what I have posted has not been about my health progress.

Would you believe I've been way too busy to blog? Too many meetings and lunches and evening get-togethers to find my way to my computer?

Didn't think so.

As hard as it is to believe, I think I started to bore myself with...myself. Which therefore must mean that someone who is not me must be positively over this whole topic, desperate for some other subject matter, and completely content to spend the rest of their days sans insight into my GI issues. And who could blame them?

But, just as the whole class is "rewarded" when those two kids ask moronic questions with five minutes left to go in the class, you will now be treated to more Adventures In E's Immune System courtesy of the email dingers.

Short story long: I'm fine. Eating better, mostly feeling better. Still dawg-tired. I'm having major psychological issues with the fact that I can neither floss nor brush my teeth till my platelets are 50,000. I have these little green foam-on-a-stick things that I have to use, but when was the last time foam got some toast out of your front teeth? I was an avid flosser pre-transplant, so the lack of between-teeth hygiene is completely wigging me out; more even than the non-shaving of the legs and the inability to groom the eyebrows that have now gone to an appalling state of nature. It's a good thing I'm blond, is all I can say, or I'd be a shoo-in for the Brezhnev lookalike contest. It's horrifying, but certainly less so than not having flossed for almost a month.

I raised the issue with my doctor (who I am adoring more every day as he gets more comfortable and funny around me). He's the head of the transplant program and--not for nothing--he has the lowest infection rate in the country for transplant patients. How does he keep these numbers so low? Because he's strict and he don't care about your wah-wah-I-need-to-floss drama. He said, "when your platelets are 50K, you can floss again." I countered with, "But I flossed all the way up to being admitted here!" He looked horrified. "Are you serious? Well then you are a very lucky young lady because that was dangerous. With your low white count and your lack of platelets you could have given yourself a massive blood infection, and those tend to not turn out very well." Then he waved his hand at me and said with a sort-of humorous shiver, "Don't tell me anymore about it! That is frightening." Apparently, plaque is bacteria. And flossing can cause microscopic nicks in your gums. Into which the plaque goes. From which you can get a mouth/gum or blood infection if you don't have the immune system to stop it. Who knew!?? I was living on the edge all that time, courtesy of Oral B.

Undeterred by his shock, I circled my way back to the "can I floss now since my white count is getting really good these days?" He repeated in the style that I do with Bambina where you are being really matter-of-fact and on-message because you don't want to have to repeat yourself again: "when your platelets are 50K, you can floss again." Still convinced of the absolute necessity of flossing, I was about to try another tack to get him to give me the nod on flossing when he said (again, like he was talking to a willful toddler. Which I suppose he was), "How about I just tell YOU when you can floss so you don't have to ask again?" I started laughing and said, "Fair enough. Point taken."

So that's where I am. I ate a pickle for the first time the other night. It tasted so awesome. The next morning wasn't such a dill-y of a time (Ba-doom-boom!), but eating it was worth the drama. Mostly I eat vegetable samosas, naan, chicken soup, and cornflakes with banana. That's pretty much my repertoire. Oh--and potatoes. Of course. My whole appetite seems to have shifted. I used to love zone bars, balance bars, all of those meal-replacement things. I literally can't even look at the packages now. I loved pizza, any kind, the greasier the better. Now it has to be a very particular type of Trader Joes frozen. I loved Diet Coke. I can barely even type "diet coke" now. I never imagined I'd be eating samosas and naan for lunch and dinner, but if it works, it works.

So that's the update. Thank you for staying after class for a few moments to get the info. Now you can go steal those kids' lunch money.

I’m not your type

As crappy as this transplant thing has been on a practical level, there are so many unbelievable science-fiction elements to it that I constantly find myself amazed that it was even possible.

First of all, let's just discuss the actual process. They were able to put someone else's stem cells into me, those cells just knew where to go, and--Great Scott!--someone else's basic life essence is now mine too. Even more amazing, I am up and walking around (albeit slowly and immune-deprived) 15 days later. (Although I will cop to my new senior citizen daily routine of afternoon nap from 2-4, early bird dinner at 6, and bed at 9pm right after Matlock...)

Secondly, I'm sitting here at the clinic getting a red cell transfusion. Red cells are the last to grow, usually between 4 and 6 months post-transplant. But here's the extremely cool, bionic, frankenstein aspect of it: right now I have no blood type. I used to be O, my donor is A. O types apparently have an "anti-A" element to them, so it's one of the hardest switches to make, with my remnant O's fighting my new A's all the way. So right now my blood type, for lack of an actual type is "ABO Unresolved." That's pretty damn cool--and weird--and unbelievable in pure medical terms if you consider that not long ago we were using leeches and not washing our hands between leg amputations at Bull Run.

I recognize that my biochem and med school friends will perhaps find all this wide-eyed wonder a little ridiculous. But I feel it. And I'm committed to finding and expounding that wonder because every day I wake up and have breakfast with The Bambina, I feel the joyous disbelief that I'm still here. And, as I've said before, I thank God that somebody out there studied science.

Commit to the Nipple

At the risk of making you think I'm a part-time stripper I will now write what I believe to be my fourth post in 2 years about adhesives on my nipples. I don't know. Sometimes a person always sees a rainbow, always picks the correct Pick Four lottery numbers, always gets called for jury duty. Me--I always find myself in situations that end up with adhesive on my nipples.

Today my "visiting nurse" came by to check my Hickman line, help me do the "flush" to keep clots from forming, etc etc. Fair enough. The nurse was extremely nice.

And his name was Paul.

Paul was a lovely, competent man. Paul has two kids. Paul agreed to wrap my Hickman for me so I could shower (you have to have three hands to do it, to coil up the lumens, cover them with gauze, and then stick an 8 1/2 x 11 piece of adhesive waterproof plastic over it all so that the line doesn't get wet in the shower. Getting it wet is a Very Bad Thing To Do). Having gotten my dressing just a wee bit wet yesterday I figured I'd have an expert do it for me today just for refresher's sake.

Paul did a pretty bad job of things, quite frankly. Or, more accurately, he did it no better than I could have done it myself. Why? Because Paul did not commit to the nipple. I could tell he was trying to find any number of ways to have me not pull my shirt down over my boob. I didn't know how to tell Paul, R.N. that I didn't care if he saw my boob. I just wanted the damn line covered. I recognize the placement of my line is awkward, but the nurse at the hospital said that it's that way for most petite people because you don't have a huge amount of space between your superior vena cava and your neck. Or something like that. Basically, wee people have awkwardly placed lines, and I, by public vote of acclamation, am apparently wee. Hence my line that requires that the 8 1/2 x 11 adhesive cover my boob and nipple as well as the line. I'm okay with that. But Paul clearly was not.

I probably could just have put him out of his misery by saying something like, "yeah, it's awkward, but I'm used to the adhesive so don't worry." But something evil in me found it funny that he was gingerly trying to preserve my dignity when we all know that I have none to preserve. The best part, where I almost had to stifle a laugh, was when he finally came to terms with the fact that the adhesive was going to have to go near NippleLand, but he deftly made a small fold in the adhesive so it wouldn't actually stick and said too quickly, "There. I've given you a little flag so you don't have to search for a place to peel it off." He did not mention that he had also thereby managed to avoid touching said nipple. He also did not mention for a few moments that he had left a large swathe of Hickman line gauze unadhered, so dedicated was he to avoiding my prodigious (not) boob.

All in all, I found it to be a very helpful and entertaining nurse visit. Although I'm sure that if I need a visit in the future, Paul will be unavoidably unavailable. ;)

Home Sweet Home

I'm going home today! Nineteen days later. Amen.

I almost got sprung yesterday but I developed a rash all over my body that was either an allergic reaction to antibiotics or early-onset Graft Versus Host Disease. So they kept me one more night to see if anything happened. Nothing happened. It still might be GVHD, but at least I'm going home.

It's astounding what happens to your mind as soon as someone whispers in your ear that you "might go home today." All of a sudden, after spending 17 days with no expectations, on Day 18 you decide you MUST go home. Now that they've said it, I must have it. I was so disappointed yesterday to spend another night here, but I dealt with it by assuring myself that today would be the day. Thank God for everybody involved that it turned out to be the case!

I miss Bambina so much I can't even discuss it. Forget chemo; being away from her was the worst and most painful part of this whole thing. I'm sure that being with her and convincing her that I'm back but not "back to normal" will be the second hardest part of this whole thing...

Everyone has been going over the rules for returning home. In essence, as I may have mentioned before, I have the immune system of a 12 day-old baby. Just as babies are born with good blood counts and yet no real immune system, so am I. So even if my white count gets back to normal by tomorrow, I still will have no immunity to anything. All the common colds, flus, skin irritants that I developed a tolerance or immunity to over 35 years are now gone. I'm back to zero. So colds and flus can kill me. Viruses that don't even register on the average 35 year-old will decimate me. Which is why going home really means that I'm trading one type of solitary confinement for another until my immunity gets up to speed over the next year and a half.

So that's the downside. So what am I happy about? What am I grateful for?

1. My donor. I still can't really talk about her without getting emotional, so generous and selfless and non-mandatory was her choice to help me. I'm a colossal cynic, but thinking about this woman, who I someday hope to meet, simply humbles me into silence.

2. My doctor. I love my doctor. I love him for being smart and kind and on top of his game. I also love him for being stricter than all the other doctors; that way you know if he says you can do something (like go home) that you can do it with confidence.

3. My nurses. God himself put oncology nurses on the planet for the benefit of humankind. I would not have made it through this without three very special nurses who talked me off ledges, out of nausea and into morphine. They are truly the strongest links in the chain of patient care. The interesting fact about all of my nurses is that they are all really pretty and incredibly talented, like you wonder if the hospital has a policy of hiring only beautiful African-American and Black Irish women.

4. My family and friends. No one gets through something like this alone. No one gets through something like this with two other people. You need a team, and I'm fortunate enough to say that I have one. From all the friends who packed up the DC house, loaded the truck, took care of Bambina on a moment's notice, to all of the friends and family who have just been there in ways large and small over the past few weeks, I know that I am standing on the shoulders of giants, and I am once again humbled into silence at the loving and giving nature of so many people.

5. All of you. For keeping me company, for making me laugh, for making me think, for giving me a reason to do something other than sit and mope. For being my mental medicine during the barrage of physical medicine. I am so truly blessed that I am, again, humbled into silence.

Unfortunately for you, the silence will probably only last till tomorrow. :)

Hurts So Good

I haven't written much because I've been in massive amounts of pain. I woke up yesterday certain that I had sciatica, that I'd pulled my back, and that perhaps I had a tumor at the base of my neck. I don't even know how to describe what I was (and currently am) feeling, but it is B, A, and D. I even consented to morphine every two hours, no request necessary.

It turns out when your bone marrow is growing that your bones actually hurt. And they hurt excruciatingly if it's growing at a very fast rate. Which means that I can therefore officially report that my white count has gone all Evel Kneivel, jumping over twelve buses, three trucks and two cars, surpassing any white count I've had in the past year. Admittedly, the huge count bump I've had is still half of a normal white count, but it's still double what I've had in recent memory.

As you can imagine, these are the days I've been simultaneously praying for and feeling too scared to admit it lest they not arrive. I've approached this whole thing with a "one day at a time" attitude, refusing to ponder questions that might arise two months from now. I know others have probably found my unwillingness to discuss some things annoying, but I just knew for my own sanity that I had to deal with today and then tomorrow, and then two months from now in two months. I've still got eleven months to go, which is a marathon. The only way it's going to work is if I continue to see today as the only day I need to get through. Especially because the very scary specter of Graft Versus Host Disease is still out there. I'm not cured--and life is not back to normal--until we know I don't have that. Which we won't know for another month or so. Which I can't worry about today.

Why?

Because my white count is growing exponentially, which means the transplant engrafted, which means my platelets will be back in a couple of months and my red count a couple of months after that. I want to experience this incredible joy for one day before I start pondering all the ways this ain't over yet, and potentially could still end in disaster.

I especially want to celebrate it because the past 16 days have been rough, and this is my payoff. I truly especially want to celebrate it because my body aches like a mofo to the level that I'm on narcotics (and actually barfed in the middle of writing this), but only because my brand new bone marrow is working overtime.

It definitely hurts so good.

Sister Morphine

--The Rolling Stones

Thank you for that intro, Mick and the Boys. It's time for that segment of the program we call 'Confession of the Week." Today's confession: I am on morphine.

Shock! Horror!

I've finally relented and allowed them to give me a small quantity of IV morphine before meals so that the pain in my mouth and throat will subside and allow me to swallow. Thereby ensuring I don't lose any more weight and that I eat enough to support my (hopefully) growing new bone marrow and immune system.

This is a huge step for me. The Physician's Assistant who comes around every day just finally begged me to take some, assured me I wouldn't end up a junkie, and told me that food was important enough to justify narcotics. So I relented. But why so resistant, Miz Haggis?

Well, it all goes back to Little House on the Prairie.

Do you remember the shark-jumping 9th season where Pa Ingalls moves the family to the city only to find Albert acting like a hoodlum? Where he forces him to go back to Walnut Grove to learn how to act like a decent god-fearing citizen? Where he finds out that Albert has been stealing morphine from Doc Baker's surgery and is now ADDICTED TO MORPHINE!!! One of the final scenes involved Doc and Pa essentially kidnapping Albert and making him detox. There was a vomiting scene so grody that, to this day, when someone says "morphine" I think of Matthew Laborteaux wretching in full technicolor all over his bed and Michael Landon. Followed by the scene in which he says he's going to make Pa Ingalls proud, and we are foreshadowed into the knowledge that he will someday become Doc Albert Ingalls. Cue the single tear in Landon's eye, the extreme close-up of the healed father-son relationship, the credits---and then the flashback in my head to the morphine vomit scene.

This was my dilemma. Every time they said, "you should take some morphine for that" I was adamant that I was no Albert "Hoodlum" Ingalls barfing all over Doc Baker's office in prairie-town Minnesota. That's all I'd need; Mrs. Oleson telling the whole town about my problems and trying to run Laura and Almonzo out of Walnut Grove on the strength of my addiction. I wasn't havin' it.

Then my lunch arrived and I couldn't even begin to eat the liquid stuff I'd ordered (soup, milk shake, boost and whipped potatoes), and I wondered WWPID? What would Pa Ingalls do? Pa Ingalls--and I'm convinced Mr. Michael Landon himself--would tell me to take the hit and eat the food. And so I did. Because if there's one thing you always get from a Little House episode, it's a lesson learned.

Day Plus Seven: Not Exactly Heaven

Lame rhyme, I know. I should have tried something creative involving leaven or Kevin or something, but I can't be arsed right now. I woke up this AM with a raging sore throat and swollen esophagus, the kind where you can neither swallow nor speak. I was afraid I had an infection. The good news is I don't. The bad news is that this is one of those week-later side effects of chemotherapy, and it's gonna get worse before it gets better.

The nurse explained that chemo affects all rapidly-dividing cells in your body. Hence why it kills cancer. Hence why it injures everything else. The cells most affected are bone marrow (of course) and the kind that line your mouth, throat, gut, intestines and rectum, as well as your skin. Which is why you get mouth sores, esophagitis, stomach aches, diarrhea and skin rashes post-chemo. My opinion? I don't recommend them. Mostly because they get in the way of eating. For the first time in the history of my life and historically proudly-fat Scottish family (ie, if you're not 10 pounds overweight everyone wonders if you're sick or perhaps waging a hunger strike for Scottish independence), I can't keep weight on. It's insane. I'm eating what I can, when I can, and drinking those dire Boost and Ensure drinks to supplement, but the weight keeps coming off. And also for the first time in my life, I'm not thrilled about it, mostly because I know it's muscle I'm losing. Which is why I'm so dedicated to my laps around the pod, in an effort to put a little definition back into my calves and to at least use my muscles even a little so they don't forget why they're there.

All of which means that I need some motivation to get up and out, mind over esophageal matter. Anyone recommend any good tunes I should download for my pod walks? I'm looking for stuff to keep me moving, not too fast, not too slow. I'll try anything; my tastes are pretty eclectic (my current mix has Creedence, The Killers, Frank Sinatra, Jason Mraz, The Clancy Brothers...).

Help a sister out.

Only Boring People Get Bored

I can't remember who said that to me when I was a too-cool-to-be-impressed adolescent, and I was moaning about how some activity was lacking excitement. I'm not sure it's absolutely true, since some things are just empirically boring. But it occurred to me today that I am going to have to make my own fun or else become a tiresome complainer. And since I cannot abide complainers I simply cannot become one.

So I was watching Ellen DeGeneres this morning. I think she is perhaps the most fun-loving person on TV. I love her show, the music, the dancing through the audience, her incisive (but not mean) humor. I never usually get to watch Ellen because Bambinas don't love talk shows, and why would we be watching TV mid-AM anyway when there are libraries and parks to visit.

Anyhoo. I was out doing my laps around the pod this afternoon with my IPod Nano (thank you BBDD!). I have been trying to do twenty laps in the AM and then again in the PM. It's hard if I've got "Fred" my recently-named IV pole on wheels/shadow tagging along since the pod ain't that large. But whenever I'm allowed off my tether, I dash out there to seize my freedom for as long as I can keep my legs from getting wobbly. Today I got wobbly before Le Freak was finished, so I came in to my room, almost sat down, and then decided to do a little Ellen-inspired groovin' in my room. Then I thought it would be funny to take a photo of me discoing at '54 for you. Then I thought I might submit it to Apple for a new ad campaign focusing on all the not-fun places you can go with your IPod and still have some fun. And why not? I clearly have nothing better to do. Just be glad my room doesn't have a xerox machine or you'd no doubt be seeing some butt cheeks instead of white-girl dancing.
"Aaah, freak out! Le freak, c'est Chic, freak out!"

Day Plus-Five and Stimuli-Deprived

I am a complete social moron these days. Twelve days in solitary and I've turned into that person. The one who says the same thing every time you see her for two reasons: 1. because she's forgotten that she's already said the same thing to you, and 2. because it's the only thing she's really got to say. When someone walks in the room and says, "How are you doing today? How are you eating?" I reply, "I'm doing pretty well. Eating rather well; building my strength now before the next bomb drops and I can't eat for another two days."

But here's the thing: I only see about 4 different humans every day, and most days, 3 of them are the same ones I saw yesterday and the day before. So when my poor wonderful nurse of 4 days asks me how I'm doing and how I'm eating on Day 4, I am giving her the same "punchline" every damn day. Bless her heart for not pre-empting me with, "Right. Eating well. Building your strength. Got it. Now shut your cakehole."

I need some new material.

Before this all started, my doctor told me the two primary side effects of this procedure would be "diarrhea and boredom." I laughed hysterically at the time. But now I'm here and the laughing has stopped. Y'all. The two (three?) most important joys of my life are a)my friends and family, and b) food. The two things I am pretty much denied for a full year? Friends and family and food. The mental challenge for me isn't worrying if I might die or if I'll lose some hair or whatnot, believe it or not. It's just getting myself okay with the fact that this is a type of (completely necessary, albeit) culinary and social house arrest. In practical terms, it's very difficult to fathom that I simply won't see my friends for a year, no one can visit my house for a year, and that I can't eat in a restaurant or order takeout for a year. And yet, when I write it out in words, it sounds so petty and stupid to be all "No social life! No moo shu pork!" And yet YET, it still bites on a daily, consistent basis.

So boo hoo poor me. ;)

Really what I'm bellyaching about is the fact that I now think I'm a bore. Perhaps I always have been, but boy the realization that you have nothing to say, nothing new to add, and absolutely no prospects for getting any new stuff soon is a frigid bucket of ice down the conversational pants.

That said, I'm doing okay. You know, eating well. Building my strength now before....