Tuesday, October 30, 2007

Nothing to Say But It's Okay

Let's take a (deserved) break from discussing disease. It becomes so dull after a while, especially for me. So, if you're looking for news about my latest platelet count, what new symptoms I (might) have, influenza issues, the Colorado v. Australia slugfest, or any other medically-related news, just stop reading now.

Daughter Dearest (that would be Mariel) writes: doing anything to stay busy at home? I always seem to be busy at home, even when I'm being a slacker. It's a special talent I have wherein one minute it's 8:15 in the morning and the next, my stomach's growling for lunch (which it just started doing). Time warping comes naturally to me, although I couldn't tell you how to do it. Either you have the ability to skewer time, or you don't.

Here's a little secret though, known to many mothers: if you have nothing to do, read a book. Or write one. I just finished (reading) a novel written by an Aussie sent to me by an Aussie and filled with Aussie-isms I didn't understand. My Aussie blood (tangential mention only, and doesn't count as a referral to the topic that won't be mentioned) must be fading, because it was no help at all translating words and terms into English. Lots of writers are mentioned in the book, and those I did recognize, except for the Australian ones. Thomas Hardy was one of the blokes quoted, so I decided to read a Hardy novel, if I had one. I do have one, and although it looks like it spent some time under water, it will have to do because I can't go to the library.

So last night, I began my slog through Return of the Native, fully end-noted with defintions of words/terms a 21st century reader might be puzzled by, seeing that Hardy wrote in the late 19th-early 20th century. I'm a sucker for reading most of the notes, which is why this is going to take me forever. But it's good for my brain to be challenged by thorny syntax and classical references, don't you think? Isn't Hardy a tad depressing? Hey, it's not like I'm reading Jude the Obscure.

Of course I do other things besides read, but I forget what they are at the moment. Some of them are related to the topic which I'm not discussing.

That's it. My mid-section is crying out for a savory dish, which it's not getting. After a thoroughly ho-hum lunch, I'll take a walk, a nap, have tea and crumpets, make a meatloaf, read. Day is done.

Friday, October 26, 2007

The Road to Hell is Paved With Good Intentions

Or, no good deed goes unpunished. Pick your proverb.

A couple of weeks ago, I asked the head transplant nurse if everyone in my immediate family should get flu shots. Usually, only Marty gets one. She said yes, so I called the pediatrician and scheduled appointments for Mariel, and Mark and Harry. Then I called back and expressed my concern that they get the shot (dead virus), not the inhaled version (live virus), the exposure of which is potentially very dangerous for an immunosuppressed person such as myself. I was assured they'd get the shots. Mariel went last week and came home sporting a colorful kiddie band-aid. Bet you already know where this is going. Mark and Harry's appointment was yesterday. When they came home, I asked Mark how the shot was, and he said "what shot"? Thinking he was pulling my leg, I said, "you went to the doctor, right?" And he said, "yeah, but we inhaled the vaccine. The lady said it was easier." Can you imagine my reaction?

Enraged, I called the pediatrician's office and spewed forth my venomous tirade. I asked to speak with the doctor, and he actually came right to the phone, apologetic but full of assurances that although the virus was live, it was weakened and shouldn't pose problems. Unless of course the boys come down with flu-like symptoms (a possibility with the live vaccine), in which case I should steer clear of them. Just what my phobometer needs. Not a word, you say? It is now.

I tried to be philosophical, I truly did. It was an honest mistake. No one intended any harm. And it is wildly hoped no harm was/is done. The inoculator thought she was doing the boys a favor, saving them a few seconds of pain. But when I emailed my transplant doctor to explain what had happened, he said I have to avoid contact with them for at least a week. I can't eat dinner with them, and I have to wear a mask when we're in the same room. Poor Mark is walking around turtle-like with his lower face retracted into his sweatshirt. There are Purell dispensers everywhere.

Phobometer's in the danger zone. Thanks for listening.

Thursday, October 25, 2007

I Kissed My Catheter Goodbye

That's right folks, yesterday, I had my pesky catheter yanked. Quite literally. It only hurt for a moment. No more contortions while trying to bathe/shower; no more fear of infection; no more daily flushing of lines and weekly dressing changes; no more worrying about tugging on lines (ouch) or worse, accidental cutting of lines (which would involve a lot of blood); no more Frankensteinian feelings (even though Halloween's around the corner and I sure could've scared people by exposing the lines hanging out of my upper chest). Goodbye Catheter, ye served me well, but I will not miss thee, even though I now have to face the needle for my weekly blood work.

Catheter removal means my blood counts continue their upward climb, and that it's very unlikely I'll need any more transfusions. This is a major milestone, and obviously I'm thrilled to have taken another step on the road to Normal. Or to Kinda Normal, which is where I'm headed. Now that I don't have to worry about my catheter becoming infected, I have more time to worry about being accidently exposed to live-virus vaccines, breathing in an aspergillis spore, relapsing, or developing acute or chronic graft versus host disease (GVHD). Fortunately, I have many strategies for keeping my mind off of these nerve-wracking possibilties. And I always have my poetry to protect me.

Sha-la-la-la-la-la live for today.

Monday, October 22, 2007

Home Alone

Can you believe it? I'm on my own after four weeks in the hospital and four at home. Now I understand why they recommend having a caretaker when you're discharged. I sure needed one, and I was even able to do many things for myself. Some transplant patients come home in much worse shape. I'd like to thank (pay homage to?) the people who helped this invalid reach today's milestone: Dianne; Esther; Karen; Chris. I will do my best to keep myself healthy, fed and in clean laundry.

It was a busy weekend, and I probably overdid it. Today I'm determined to be as sloth-like as possible, moving at a rate of 8 inches in 3 hours. We'll see. I spent much of Saturday in Goddard Park watching my boys run in the Brown Invitational Cross Country meet. It was chilly to begin with (for me) but the sun came out later and warmed me up to the point where I only had to wear three layers. My body temperature is only in the 97 degree range, so I get cold easily. Even though I brought a folding chair and sat for most of the time I was there, I still did plenty of walking across the field to try to get good vantage points. Both boys PR'd, Harry cracking the 20 minute mark (19:36), and Mark slipping into the high 15's (15:49).

There was hell to pay Sunday, though. The first part of the day was slow slogging. I was queasy, tired, and frustrated that I wanted to do so many things but could not, either because it's illegal (raking leaves) or because my batteries were dead. Mariel had agreed to prune some bushes and dead-head perennials for me, but she was leaving to fly back to school in the early afternoon, so I dragged myself out of the comfy recliner, and went outside to supervise. I think the fresh air revived me because I suddenly felt up to giving Harry and Mark haircuts on the deck. You'll be relieved to know I didn't cut anyone, including my low-platelet self. Actually, the haircuts came out quite good, considering my relative weakness and slight scissor-hand tremor. Brave boys.

That was it though for the rest of the day. All I could do was nap and read the NY Times. Ah, what a life.

Thursday, October 18, 2007

"Glad you're getting bloodier."

That was my friend Peter's reaction to my rising blood counts. Yes, I am getting bloodier, and thankfully it's all staying where it belongs, inside.

This probably explains why I've been feeling more energetic. I'm taking on more and more activities (lunch-making, laundry--only my own, getting out winter clothes and putting away summery ones), things I couldn't even think about doing a couple of weeks ago. Tomorrow will be seven weeks post-transplant.

There are many things I can't do, some of which I regret and some of which I don't. I regret not being able to get outside, especially on a day like today, and rake leaves. Yup, I like to rake leaves. I'll have to be content with watching the colors turn and then drop as the rest of my family rakes and rakes and rakes, and then withstand long pouty faces and complaints about how Mariel is getting out of the job.

I still feel incapable of putting dinner together and cleaning up afterwards. Maybe because it's late in the day and I've had enough excitement. Maybe I'll feel this way permanently. I'm sure millions of you out there share my sentiment and you haven't even had a transplant. At least you can opt for take-out or a restaurant. That's considered too easy, I mean risky, for me. The irony is that an iron-laden spinach salad is a definite no-no, akin to carrying around a live grenade in my pocket all day. However, anything with preservatives, any food that's been virtually stripped of all natural nutrition and then pumped with unpronounceable chemical compounds, is allowable, if I can swallow it. My brother Chris is making lasagna tonight (domestic pasteurized cheese only!) and instead of a nice crusty Italian bread to go with it, we'll have to opt for one of those pre-made garlic breads in the frozen section, the ones that are a scary yellow color that glow in the dark and have a strange after-taste.

Today's plans include a stop at the bank's drive-in window, a masked and gloved foray into the drug store, a walk, a nap and plenty of food. They love it that my weight's steady if not rising. Thank you packaged convenience food!

Sunday, October 14, 2007

The Envelope, Please

The results of my chimerism test have come back and here's what my blood's made of: 1% me; 33% cord #1 (Australian male); 66% cord #2 (Coloradan male). Chimerism is the condition of being genetically incongruous. I received blood cells from two different sources, and it appears the Colorado batch is winning the battle of who gets to be Top Blood.

What does this mean for me? Well, it means I've disappointed all those folks who wanted me to have Australian DNA, possibly aboriginal. Unless of course the Aussie makes a comeback and kicks the Coloradan's butt, which isn't likely. So Colorado it is. I've immediately started rooting for the Colorado Rockies in the playoffs/World Series. I've caught myself humming John Denver's "Colorado Rocky Mountain High" at odd moments. Still haven't developed a craving for Coors.

Most importantly, this means that there's very little of me left from a blood standpoint, and that's the goal. I will be an enigma to DNA testing should I decide to leave this suburban life behind me and enter a life of crime.

Recent Accomplishments:
I watched Mariel run in the Seven Sisters cross-country meet in Wellesley, MA yesterday. Swarthmore's not a a member of the Seven Sisters but since there aren't seven left, they invited a couple of other schools they thought might fit the profile. This is what I'm guessing.
I baked scones this morning for breakfast.
I am directing a cadre of workers (mostly relatives, including 2 of my brothers) in a fall clean-up project from the comfort and warmth of my family room.

Now I'm going to eat some candy and read the Sunday Times from cover to cover. Hey, live for today.

Thursday, October 11, 2007

Life on the Edge

Yesterday was clinic day at Dana-Farber. I was having a good day; in fact, it was the second good day in a row. I was thinking, if I feel this way, my blood work will surely reflect it. But as I'm sitting there in this huge waiting room filled with transplant patients in various states of mobility and health, all of them masked and gloved (as am I), I suddenly have a moment of pure panic. My body has fooled me before. Leukemia itself has never actually made me feel sick, so what do I know about the relationship between how I feel and what evil lurks within? Maybe the graft is failing and my blood counts are plunging into the basement. I have my anti-anxiety meds with me. I could pop one right now and feel calmer in a few minutes, or I can continue to fret until I see the doctor. By now I've learned that drugs are my friends, so I go for it. Pavlovian conditioning means I feel better immediately, before the pill even dissolves. If the news is bad, I will handle it with equanimity. I'll have a breakdown later.

But the news is not bad. My counts are creeping up (expected with baby blood) and I don't need a transfusion. Good news indeed. I've survived to live another week on the edge.

One thing I've learned about this nasty disease is that one minute you're fine, the next you're in ICU. A woman I know through the blogosphere, who's 130-something days post transplant (double cord, just like me so I follow her progress like it's my own; plus she's sent me highly supportive emails, which I deeply appreciate), is back in the hospital. She was doing really well, and boom, she develops a fever and is now being dosed with antibiotics and tested up the kazoo. Post-transplant patients like us have virtually no immune systems, and life-threatening germs are EVERYWHERE. Just getting up in the morning is a potential health hazard. I should probably be wearing a haz-mat suit when I enter my kitchen. I accept that all we are is dust in the wind, but that dust can kill me.

Okay take a deep breath; release. Repeat. I just wanted to give you an idea of what lurks in the back of my mind all the time. Most days I do a reasonable balancing act on this razor edge, taking special care not to cut myself because I might not have enough platelets to staunch the flow of blood. I'm confident that if I should fall, my doctors will use everything in their arsenal to put me back together again. People do survive transplants, and I'm sure I will, too. Except when I'm not sure.

Sending healing thoughts to my blogging buddy in Houston.

Monday, October 8, 2007

Sans Sang

Here it is, 11:30 in the morning and I'm lounging on my bed wrapped in an afghan and enjoying the heat emanating from my laptop. Normally, this would be the job of a cat, but I don't have a cat, and this way I don't have to deal with the hair. I'm suspecting that laptops when used on laps possibly result in an increased incidence of lap cancer. I ramble.

Given my malaise, you'd think I actually did something today but you'd be wrong. Unless of course you consider passive "doing," in which case I suppose I never stop. My friend Andria in a recent email reminds me that I am a 24/7 blood-making machine, which is true. Today I just feel bloodless. (Apologies to those of you out there who actually speak French and are wondering what the hell "sans sang" means. I'm hoping it means bloodless, but I feared looking it up because I was so taken with the euphony of the phrase. Plus I really needed a title.

I had a revelation today. Maybe that's why I feel so listless. I was thinking about all the help I've been receiving from others--the shopping, the cooking, the chauffeuring, the laundry, the disinfecting of the kitchen--and I realized how much work I used to do every day without being aware of it. Sincere thanks to all of you who've already put in your hours; advanced thanks to those of you who've lined up for future tours of duty in the home of your poor bloodless friend/sister. And let's hear it for all of you out there who dutifully perform the daily grind in your own homes. I'm tired for all of you.

Marty just came up with a stack of laundry. He thought he was off for Columbus Day! Tote that barge, lift that bale.

I have to cut this short because my baby blood cells are working a double-shift.

Friday, October 5, 2007

Only 10 AM and I'm Ready for a Nap

"This is not an easy life. But it's the only life we have, so we might as well get on with it." --Leroy Sievers, author of "My Cancer" blog on NPR.org

I think I read somewhere that a reliance upon quotes demonstrates an absence of ideas. That may be, but something about Mr. Sievers' straight forward eloquence made me want to share his wise little nugget with you. Somehow, it makes my exhaustion easier to take. Today, it's exhaustion; yesterday, indigestion; but, hey, I'm not in any pain. I'll take it.

Writing no doubt takes more energy than I can afford, but I've promised myself to take a nap after this. I don't seem to have a reliable internal measure of when I'm over-doing it. It could be that I'm having trouble reading my body's signs in general, which makes sense given what's been done to it and how much medication I'm on. (Blame it on the meds--my favorite). The doctors assured me there'd be days like this.

No, life ain't easy sometimes. Or even much of the time. As my neighbor Gil used to say, what's the sense in kickin'. This is a sleepy morning, maybe a sleepy day. I wish I had more energy. Maybe later. Might as well get on with it.

Thursday, October 4, 2007

My Walden

"I should not talk so much about myself if there were any body else I knew so well. Unfortunately, I am confined to this theme by the narrowness of my experience."
Henry David Thoreau

Summer's pushing back at Fall once more, although Fall's rot is in the air. I'm writing this from the Adirondack chair perched at the top of my front lawn. All I see are trees and sky. If this suddenly goes blank, it's because an acorn knocked me unconscious.

My transplant doctor once referred to the transplant journey as a Year of Isolation (my caps), and so it is. Except for trips to Boston to go to the clinic once a week, I venture no further than my mailbox, or on energetic days, down the street and (maybe) around the corner on dog-walking expeditions.

It's a good thing I don't mind solitude.

Yesterday, I managed to iron a pair of pants, a testament to my vanity as well as slowly gaining strength to perform non-essential tasks. While I was at it, I ironed a shirt, too, just to push my limits. Then it was off to Boston for my weekly blood draw and visit with the transplant team. The waiting room was filled with transplant patients in various stages of recovery, most wearing masks and gloves, all accompanied by a caregiver. Sitting in that sea of immuno-compromised people it would be easy to get depressed. But hey, we were all living, at least in that moment, second-chancers (and perhaps third and fourth as well.)

My blood counts remain low, but they are slowly drifting in the right direction, and were high enough that I needed no transfusions. Dr. A. seems to think I can make it to next week's appointment without intermediary blood draws like I had last week. All seems to be going well, and I was reassured that my physical complaints and limitations are normal. Of the 14 vials of blood they extracted, one will be used to do a chimerism test to determine which of the two cords is winning the survival battle. Apparently, the fittest grows stronger, while the weaker fades away. So next week, I may know whether the blood of an Australian or Coloradan male runs through my veins. Kinda interesting to contemplate, no? This should make for some insightful commentary among the faithful, I'm sure.