Monday, December 31, 2007

2007 Up in Smoke

I've got a serious conflagration going here as I torch all the 2007 calendars in the house. Good riddance to bad rubbish, I say. It was not a very good year.

A person who posts on the LLS Discussion Board gave me the idea. She actually had a worse year than I did, I think. Lots of people did. All over the world.

Not that 2007 was a total washout. Some good things happened, too. Even in the worst of times, there was occasional humor to be found. Go back and read earlier posts and you'll see that some of the circumstances I found myself in were too ridiculous not to laugh about. And of course I'm still here authoring this blog, a huge plus.

So tonight, we'll take a cup o' kindness (about all I can have a cup of, my dears), ring in 2008 (probably around 9:30 pm) and look forward to a better year.

SPECIAL ANNOUNCEMENT: Tune in tomorrow for a hair-raising multi-media edition of The Plog.

Thursday, December 27, 2007

Ode to Sleep

On this my pensive pillow, gentle Sleep!
Descend, in all thy downy plumage drest:
Wipe with thy wing these eyes that wake to weep,
And place thy crown of poppies on my breast. --Thomas Wharton, Jr.

I've never been a great sleeper. The only way for me to sink into a deep sleep is through illness or heavy drugs, and then it's more like unconsciousness than restorative sleep. These days, I feel pressured to sleep, since it's said to boost the immune system.

Lately, I've gone to bed tired, positive that I'll fall asleep right away. But no, as soon as my head hits the pillow, I start having conversations with people. Sometimes I talk to my doctors about my illness; sometimes I talk to my brothers about our childhood; most of the time, these conversations don't cover any new ground, nor do they lead to any apparent insights. Last night, I was telling someone about how I started running at age 44, reliving how difficult my first 5k race was. Thinking about running is no way to fall asleep.

Often, I'll think about the people I've met on the Leukemia/Lymphoma Society discussion board. These people--some patients, some caregivers--are at the center of my social world at the moment, more real to me right now than my best friends. That's because we share a bond that we don't even want to share: all of us have struggled with the Beast. It's an interesting and informative community, unconstrained by time and space. The downside of participation is that members die, often of the very disease you happen to have. That's hard to take. Every time I read a post about another passing, I feel like crying. Sometimes, I do. Right now, there's an "in memoriam" thread listing all our comrades who lost their battle in 2007. It's like entering a virtual veterans cemetery, where everyone who's died has died from the enemy you're still fighting. It's not easy, but it's important to remember.

And I need the reminder. Some days I forget what I'm up against and become too complacent. I forget I'm walking through a microbial minefield, a mental defense mechanism that could be deadly. I must: Think Germs! Wash Hands! Take Meds! Drink Lots of Fluid! Hand Sanitize! Don't Stress! Get Lots of Rest! Live One Day at a Time! Eat Right! Make a mistake, or too many mistakes and BOOM!

When I go to bed tonight, I'm going to try to shut out the voices, the worry, the fear, the cataloging of experience. Maybe I need to look into getting a crown of poppies. The other stuff I'm taking just doesn't work.

Saturday, December 22, 2007

Camptown Races

The results of my latest chimerism test show that the Colorado cord is widening its lead over Australia. The analysis of my peripheral blood puts Colorado (60% )out in front by at least two lengths, with Australia (40%) starting to fade in the stretch. My bone marrow shows an even bigger gap: 28% Australia / 72% Colorado.

Can Australia come from behind and win this thing or is he out of gas? Can Colorado maintain his commanding lead? It's a horse race: anything can happen and winning is up for grabs. And we still can't rule out a dead heat.

I'm uncomfortable with the impersonal nature of calling a person's blood by the name of his country or state of origin. Colorado will forthwith be known as "Peetz" after a Colorado town of same name. Australia will be called Paleroo, or Pal for short.

Do-dah, do-dah.

Friday, December 21, 2007

Solid Information

Liquid information is good, but solid is better. The bone chip off the old block showed no leukemia and no host (that would be me) cells. My baby boy donors are partying without me, doing the XY shuffle.

The battle of the boy blood rages on. Who will win? Will it be Little Mr. Colorado USA or Little Mr. Australia? Vote for your favorite now!

Thursday, December 20, 2007

"The liquid information is excellent."

Now we're just waiting for solid information.

Allow me to translate the title quote. When a bone marrow biopsy is performed, marrow (liquid) is extracted as well as a teensy piece of bone. Don't faint. It's not that bad. Really. The results from the marrow show no leukemia and 100% donor cells, which is basically FANTASTIC. Solid information (i.e., from the bone chip) should be available today or tomorrow.

My 15 minutes of elation have ended. As Yogi says, it ain't over 'til it's over, which for me will be sometime in the Summer of 2012. That's when I will be certifiably cured. Only four-and-a-half years of anxiety to go!

Considering the good news, I'm feeling a bit piffy today. I didn't get enough sleep last night (I was seduced into watching a questionable TV show; my bad). I physically went way over the limit yesterday, and dem bones are protesting wildly. My knitting project required pretzel logic, not to mention mathematical and spatial concepts unused since my last IQ test, circa 1974. And the stress, oy the stress.

Let's collectively exhale.

Wednesday, December 19, 2007

"I sing to use the waiting"

I'm not going to bore you with more blather about waiting. I'm just going to cite some other folks who've explored the topic, starting with Emily Dickinson who's quoted in the title of this post. There's a novel called Waiting by Ha Jin; also a film by the same title. There's book-to-film Waiting to Exhale (Terry McMillan). Jim Morrison was Waiting for the Sun. Tom Petty reminds us that The Waiting is the Hardest Part. In Samuel Becket's Waiting for Godot, waiting is boring, slavish, funny, pointless and intensely human: "Such is life."

Tuesday, December 18, 2007


Still waiting for news,
as ants crawl across my skin.

Monday, December 17, 2007

The Weight of Waiting

The sinister ding of email arriving in the inbox, the menacing ring of the telephone, the desire to run away and not be found. Waiting for lab results twists your guts into knots, pierces you with tenterhooks, makes you think the blackest thoughts.

I was told to contact the doctor mid-week for the results of my bone marrow biopsy and chimerism test. Today's only Monday. Still, the preliminary results could be in. I could dash off an email, but why look for trouble? Ignorance is bliss. If the results are bad, I'm sure the doctor will contact me right away.

Practice does not make perfect when it comes to this waiting game. You want to know and you don't want to know. You look up and there's the sword, sharp and menacing, right above your head. Say you get good results. You are euphoric for several moments until you realize there will be more waiting. There will be constant waiting. You will have your liver plucked out every time, only to have it grow back so it can be snatched again.

That's what this waiting game is all about. It's no game.

Sunday, December 16, 2007

Another Hurdle Cleared

Today is the 100-day anniversary of my cord blood transplant. In the transplant business this is an important milestone, so I feel compelled to mark it. My doctor described the transplant journey as a series of hurdles to overcome, an apt metaphor I think. The first hurdle was getting through the pre-transplant regimen, a highly toxic brew that blasted any leukemic cells lurking in my bone marrow, and effectively dismantled my immune system. With zero ability to fight infection, I had to hope my new cells would quickly grow and produce the whites, reds and platelets I desperately needed to survive. It worked. After 12 days on a wire without a net, the new cells engrafted and I was out of serious danger, although still at risk. I'd made it over the first hurdle.

The second hurdle would be living through the next few months without getting an infection, and without my new blood attacking the rest of my body as "foreign." When this happens during the first 100 days, it's called acute graft versus host disease. It's serious, and can take down a body already severely weakened by chemotherapy. I swallowed many pills designed to combat GvHD. But these immuno-supressants also prevented my immune system from developing, which in turn kept the risk of infection at a very high level. I was still on the wire, with a "net" this time, if you can call two baby boys holding a blanket a net.

For 100 days, I balanced risk-aversion with risk-taking. I slowly returned to life before transplant, with certain restrictions, of course. I began to have days where I "forgot" I'd had a transplant, although my pill regimen kept that feeling in check. On Day 89, my doctor told me to begin tapering the immuno-suppressants. He also said I could liberalize my diet, meaning I could have foods that had been black-listed for 3 months. Being an over-achiever (and one very fortunate person), I took my second hurdle 10 days early. And now I have survived 100 days. As my daughter would say, woot!

Now the course becomes more interesting. It's possible I'll develop chronic GvHD, especially as I continue to reduce the meds that keep my new blood from sparring with the rest of me. It could be mild or severe. If it's severe enough, I'll have to take steroids to treat my condition, which in turn will suppress my immune system. The other factor in this strategic balancing act is that I remain in remission. This feat requires a sustained hurdling effort. In fact my feet will barely touch the ground, because relapse could come at any moment. While I can somewhat influence my outcome through hygiene, living a hermit's life, and religiously taking my meds, I have absolutely zero control over the course of my disease. Sigh.

To celebrate this auspicious day, I plan to do things I enjoy: read, knit, cook. I'm not going to dwell on the results of my bone marrow biopsy, which I'll be receiving this week. Oh yeah, and I'll be sure to stay nimble and maintain my equilibrium, both physical and mental. Falling is such a let-down.

Friday, December 14, 2007

The Need to Read

This is my plug for reading for pleasure, a habit that's in steep decline in the U.S. Research I've done for a grant I'm writing confirms this sorry news. Americans read for fun on average 7 minutes per day. We spend hours, at times slumped and drooling, in front of the tube. My sons have pretty much replaced TV with video gaming, which I suppose provides training in finger dexterity, enabling faster text messaging ability, but I'm not sure if the benefits go beyond that.

I'm reading two books at the moment, one my daughter Mariel recommended called "The Spirit Catches You and You Fall Down" and another entitled "Things Fall Apart." I've been in a World Lit mode, which means I've been all over the globe sampling various cultures and trying to get my geography straight. "The Spirit Catches You" by Anne Fadiman is a non-fiction account of the acute culture clash between Hmong refugees and American doctors in Merced, California. The Hmong are an ethnic Chinese people who migrated to Southeast Asia in the 70's and eventually moved to the U.S. (and other countries). Chinua Achebe, a Nigerian, wrote "Things Fall Apart" in 1959, an assignment in my son Harry's English class. He is kindly allowing me to read it. I'm not very far into either of these books, but I'll admit that I'm entirely ignorant of the cultures they describe.

Just before starting these books, I finished "A Fortunate Life" by A.B. Facey. Facey lived most of his life in the Australian bush, but saw a bit of the world when he fought at Gallipoli during WWI. His was a harsh, impoverished life, with no formal education (he taught himself how to read and write), and little in the way of family support. Prior to that book, I read "Dirt Music" by Tim Winton, a novel that takes place in present-day Western Australia. I'm lucky to have a book-loving friend in Melbourne who's been sending me books (including an Aussie phrase book) I'd never run into otherwise. "Dirt Music," with its references to Thomas Hardy and other English writers of the late 19th - early 20th-century, made me want to re-visit that literary period, and so I re-read Hardy's "Return of the Native." If you ever want to dwell on human frailty and futility, Hardy's your man. Ditto if you want to improve your vocabulary, and your reading ability in general.

What books have you read lately that you'd recommend? My niece mentioned "The Brief Wondrous Life of Oscar Wao" by Junot Diaz (I think she met the author at a reading), so I've requested it from the library.

If you're brave enough to discover just how much you don't know, read.

Thursday, December 13, 2007

Testing, 1, 2, 3, 4, 5 ...

Yesterday was my BIG 100-day post-transplant check-up, done 4 days early (Day 96) because I don't like to wait until the last minute to complete my assignments.

My first stop was Phlebotomy, where they drained me of 13 tubes of blood. Then it was off to find the Respiratory Clinic where I was scheduled for a Pulmonary Function Test. I'm happy to tell you I passed all the various tests, which involve breathing into a tube in different ways. The results compared favorably with the one I'd had pre-transplant, which means my lungs are fine. Next, I went to Radiology for a chest x-ray, which turned out to be normal, too.

Then we (Marty and I) met with the doctor's assistant to go over meds, bloodwork, etc. I was hoping I'd be able to stop boiling my tap water and be able to eat grated romano cheese, but the answer was no and no. I can have freshly ground pepper, though.

Finally, I had a bone marrow biopsy. It was a little more uncomfortable than usual, but not too bad. Unfortunately, the doc had to re-insert the needle because the first attempt failed to bring up the small bone chip they analyze in addition to the marrow they aspirate. Are you cringing?

Now it's a waiting game, a game I am all too familiar with, and one I hate with a passion. I was told to call in a week's time because they'd probably have the chimerism test back by then, too. Stay tuned for the latest score in the Aussie vs. the Coloradan Slugfest. I'm cautiously optimistic that I remain in remission, but since I've been sucker-punched before, I'm keeping my dukes up just in case.

Tuesday, December 11, 2007

Breakfast for Dinner

Every so often, my family likes to take a break from the protein/starch/vegetable dinner dialectic and have breakfast instead. Last night, we had corned beef hash, eggs and Pillsbury "Butter-Tasting" biscuits. I was immediately suspicious about those biscuits, knowing full well that they contained faux butter, whatever that is. Then I made the mistake of reading the food label on the can of corned beef. We consumed so much cholesterol, I was was sure the blood in our arteries had turned to sludge.

I calculated that I myself had swallowed 550 mg. of cholesterol, 250 mg. more than the American Heart Association's daily recommendation. Whoa! No wonder I felt greasy and bilious afterwards. Marty decided to put off his fasting lipids test for another day.

What's amazing is that some people have this type of breakfast for breakfast nearly every day, perhaps substituting bacon or sausage for the hash. It's Lipitor to the rescue!

Chastened, I plan to counterbalance yesterday's gluttony with a more Spartan diet today. Breakfast consisted of cooked oatmeal with 1% milk and a drizzling of maple syrup. How virtuous!

Tomorrow, I'm going to Boston for my super-duper 100-day post-transplant check-up, only it's day 96. My lungs will be the focal point for some reason. I have to submit to a pulmonary function test and a chest x-ray. These are easy to handle and involve no pain. It's the bone marrow biopsy (my 13th in 21 months) I'd prefer to skip, both for the discomfort it causes, and the 4 or 5 days of anxious waiting for results.

Where's my Ativan?

Monday, December 10, 2007

Eat, Pay, Love

Faithful, even occasional readers of this blog know that I was required to follow strict food guidelines in the three months following my transplant. Except for a few relatively minor lapses (I confess to three fresh bagels), I did my best to adhere to the letter of the law. I'm sure I committed unintentional blunders, but fortunately I suffered no consequences.

Last week I was told I could "liberalize" my diet. I'm afraid I went overboard. I added heretofore forbidden foods at a rate and quantity that likely compares to the amount of alcohol consumed by the average freshman college student on that first weekend away from home. Goodbye processed food, hello pizza, Thai take-out, salad, apples, more salad, bakery-fresh bread, birthday cake, leftover Thai-take-out--you get the idea. The problem was, I was sure that I would pay some price for binging on deliciousness. Even the tiniest digestive signs fed my anxiety. The deadliest strains of e. coli and salmonella bacteria infected my thinking, if not my gut. I worried I would not know which food had poisoned me. Unlike the recommended method of introducing new foods to a baby's delicate system (that is, one food at a time), I re-introduced many foods all at once. The food fest was therefore tempered with the sobering thought that I might need to have my stomach pumped.

Today I can say I have no regrets: I loved eating all that yummy stuff. That's easy to say since I survived the orgy with only minor indigestion that wasn't even Rolaid-worthy. I love good food, and can't wait until I can have a medium rare steak washed down with a sturdy red. But wait I must, probably at least another nine months.

Friday, December 7, 2007

Remembrance of Things Past

I reached for the small bottle of amber liquid and poured some on the washcloth. Suddenly, I was transported back to Roger Williams Medical Center, where I'd spent too much time being treated for leukemia. I had to be careful washing around the catheter that protruded from my chest, even though it was covered with plastic. Nausea, a near-constant companion, surrounded me in the steamy mist and threatened to knock me over. The all-purpose shampoo/body wash mocked me as I slathered it over my slumping, chemo-ravaged frame. I had no hair, and taking a shower had become an oppressive task. The liquid reeked of cancer.

The smell of that bath gel brought back awful memories. Why had I saved it? Looking at the bottle hadn't unnerved me, but the smell sent me right back to a time and place I prefer not to re-visit. Part of me, the tough (and thrifty) part says: keep the cursed stuff, use it til it's done and kick that olfactory memory in the butt. The other part says: toss the goo; it's not worth the mental trauma.

What would you do?

Wednesday, December 5, 2007

Holiday Gifts

I got a wonderful gift yesterday, all the sweeter because it was unexpected. My doctor told me to begin tapering one of my immuno suppressant drugs, reducing the Prograf from 3 mgs. per day to 2. Normally, this wouldn't happen until around Day 100, but due to the apparent precocity of my baby boy blood, I was deemed ready to taper at Day 89. But that's not the gift I'm referring to, although it is connected to loosening the handcuffs on my spanking new immune system, which is what the reduction in Prograf does. No, the gift was much more exciting than one less pill per day (and a little one at that). My doctor said I can now eat some of the foods I've been denied these last 3 months: salad, thin-skinned fresh fruits (apples, grapes), undercooked veggies, fresh bread/bagels/bakery items and--here's the best part--take-out food including pizza. Unfortunately, I don't live in the pizza capital of the world, which would be NYC. But we can get decent New-York-style pizza here in Little Rhody, and (excuse the shouting) WE ORDERED SOME FOR DINNER LAST NIGHT.

The pizza was pretty tasty, but it ended up being the gift that kept on giving. At 2:00 am, I awoke with a bit of a stomach ache, thinking great, I've poisoned myself. But it went away, so it must have been mere indigestion. This morning, I enjoyed a crusty baguette for breakfast. Maybe I'll have an apple for a snack later on.

My excitement about eating foods like pizza and french bread is no doubt a typical response for a transplant patient. So much of my life right now is proscribed by my transplant, that it's a minor miracle when a change occurs. It's not just the pizza, but what it represents. My body is getting stronger and able to take on a few new risks. My crawling immune system is learning to how to walk. Let's just hope any stumbles are minor and not ER-quality.

I've saved the best gift for last, one that I gave myself: I started working again. I'm back to grant writing for the library, from the comfort and safety of my own home. My first project is due December 16, basicially an essay describing what unique or creative way the library has encouraged reading this year. My knitting project has suffered a bit, but it was basically limping along anyway. Someday, I will have a sweater. In the meantime, I'm getting a little self-estem boost, and a modest paycheck.

Monday, December 3, 2007

Mind Over Matter

All my life I've depended upon sheer force of will to accomplish things. When I was dealt the leukemia card, I never once thought I wouldn't be cured (well, maybe once or twice). Cancer aside, I have a long history of making things happen through willpower. My return to running is a good example: my head says do it; my body feels like a whipped horse. Of course, my willpower is very effective in motivating me, but less so in getting other people to do stuff they'd rather not do. I force myself to do things I don't want to do, even when my body (and my brain) says let's table that to later or tomorrow or five years from now. Call me crazy, driven, obessive. Just stay out of my way.

Hubris, I know. Rationally, I realize I can't control matter, any more than I can will a heavy object to float in space or move across the floor. I had no control over those rogue blood cells that decided a coup d'etat would be amusing. I have little control over the nasty microbes in my environment that are surely out to get me. I try to avoid giving them a chance, but you can't control everything, or even much. It's a veneer, a protective shell this belief in mind over matter. Scratch the surface, and the chaos that lies beneath overwhelms.

Lest you think this is pure philosophical drivel, I'll provide an example of what I'm talking about. Here I sit, 87 days post-transplant and I'm apparently fine. Fine meaning the transplanted stem cells did what they were supposed to do, and I have not been attacked by any opportunistic infections, even though my immune system is like a house of cards, easily brought down. Of course, I try to control my environment as much as possible. I take my meds religiously; I worship at the fount of hand sanitizer; only foods which have been blessed by the All-Knowing Nutrionist pass my lips. You could probably do open-heart surgery in my kitchen, it's so clean. Even so, lapses are possible, and then there's all the things over which I hold zero sway: my son coming down with a cold; the wood smoke I inhaled on my walk; the honey I put in my home-made granola possibly not being cooked enough*. Each of these dangerous (for me) things happened yesterday. The only way to know if they won't harm me in some way is to wait a few days to see if the other shoe drops, that is, if I develop a fever, a cough, a fungal overload.

In the meantime, I soldier on, doing the best I can to stuff Anxiety in the broom closet (I'm not allowed to sweep or vacuum, so that's a good place to put him), kidding myself into believing I can control things, even with a mind that's a stern and uncompromising task-master. Matter always trumps mind, but I choose not to think about that.

*For some reason, raw honey is the only item on the "Never-Eat-Ever-Again" list for patients who've had transplants.