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.

Thursday, November 29, 2007

Running on Empty, But Running

My endorphins are flowing today. I feel truly mellow, and here's the reason why: my doctor said I could start running again. Wasting no time, or very little, I donned my jogging togs this morning and ran a whopping .6 miles, or 1k as I prefer to call it. Obviously, I survived.

Wait, it gets better. The doctor also said I could have fried eggs over-easy. Since my transplant, I've only been able to eat rubberized scrambled eggs or hard-boiled ones. No runny yolks to wipe up with my toast due to possible salmonella poisoning. Harry suggested we have a fried egg party last night, but I managed to hold off until this morning, after my petit jog. Just to be safe, I washed the shell (that's right, I only had one egg--I don't want to throw all caution to the wind) with anti-bacterial soap before cracking it open, since it's the shell that possibly harbors the nasty microbes. Naturally, this is an extremely delicate operation, and works better with brown eggs due to their slightly tougher shells. Do I need to tell you my breakfast was delicious?

But wait, there's more. My Raynaud's Syndrome is now cured! For those of you who've never heard of Raynaud's, it's a circulatory problem that prevents blood from flowing to fingers and toes, causing these extremities to turn white, blue or red. Pain's not far behind, although in my case it was more of an annoying discomfort than actual pain. Raynaud's is thought to be an auto-immune issue, so it's not my new blood that's worked the cure, but my new immune system. As weak as it is, it's somebody else's, and that person doesn't have Raynaud's. Wonders never cease with this transplant business.

That's the good news, along with the fact that my bloodwork continues to shine. In the less-than-exciting-news category, my doctor says I must still remain sequestered for a long time. I was hoping that after I reached the 100-day milestone (on December 16, but who's counting?) I might be able to relax some of the strictures placed on socializing. This is not to be. An outdoor barbeque might be okay, but that's not going to be possible any time soon. My doctor advised that I avoid groups of people indoors, and I plan to follow his advice because I've followed it to the letter so far (except for those bagels and slice of imported swiss) and not been sick. He said there's always next year.

Next year. I like the sound of that.

Monday, November 26, 2007

Monday, Monday

I'm sooooo tired. Why? Most likely because I overdid it this weekend, although my lack of an immune system naturally makes me think of something more sinister. That's a good thing, though, worrying about my fragile health. Sometimes, I feel so good I forget I had a transplant 80 days ago. While this may be beneficial psychologically, it makes me take risks I'm not even aware of taking.

Acceptable reasons to be tired:
It's Monday, and the sky is grey.
I cooked a traditional Thanksgiving dinner.
I went to the Nike Team Regionals X-C meet and (shoot me) did too much running, hill-climbing, screaming.
While the rest of the crew raked leaves, I did laundry and made beds.
Woke up at 4:30 this morning.

Fear mongering:
I was exposed to something and will soon sicken.
I ate a slice of unpasteurized cheese (and other food lapses). Woops.
Over-exercising further weakened my immune system.

Now that all is quiet again, now that I am completely and utterly alone (until 2:30!), maybe I'll relax, take a nap, do nothing. Yeah, right, me do nothing. You should see my list. I'm even thinking about returning to work (if I can do it at home). Maybe I should think about that a little more ... .

Disclaimer: If my doctors or other medical personnel read this, I was only joking about the cooking, running, house-working, forbidden food eating. I spent the last 4 days knitting and reading. Really.

Thursday, November 22, 2007

Alice's Restaurant

A long-standing Thanksgiving tradition in my family is listening to Arlo Guthrie sing "Alice's Restaurant." Growing up in the New York City area, my brothers and I used to listen to it every Thanksgiving morning on the now-defunct (format-wise) radio station WNEW. My husband and I didn't think we'd hear it on the radio when we lived in Costa Rica, but a check of the English-language station proved us wrong. We were able to continue the tradition, exposing our children to a little bit of ancient musical history: a protest song from the Vietnam War era.

Now we live in Rhode Island, and it seems every Thanksgiving we have to scramble to find the song on the airwaves. We never remember which station plays it; I suspect more than one does. So this morning, my husband was on-line trying to see if it he could find it on the playlists of various stations when I decided to turn on the radio to see if any of the likely stations might announce plans to play it. I pushed the button, and there it was, about 3-4 minutes into the song. Arlo and Company had been arrested for littering and were making a court appearance before a blind judge. After the song was over, the DJ announced that it could be heard again at noon. This time, the whole family listened: we were a movement!

Today is +76 post-transplant. I went to clinic yesterday in Boston and discussed real estate taxes with my doctor. I have no symptoms, I am doing better than anyone (including myself) expected and my blood counts are all great, so we have to find something to talk about for 5 minutes. For this, among other things, I give thanks.

The turkey's in the oven, the apple pie's baked and we just came back from a walk in unusually mild weather. I'm thinking about egg nog, booze-free of course.

It's good to be here.

Monday, November 19, 2007

Got Inspiration?

What inspires you?

I received an award Saturday night (not in person, because my fragile immune system wouldn't allow me to be in a room with so many people) that suggests I helped motivate the East Greenwich High School Cross Country team in its journey to the RI State Championship (and beyond). I'm of course honored and humbled to have this recognition, but come on, if not for the XC team, I wouldn't have left the hospital as soon as I did. Nor would I have had so much health-inducing fresh air and exercise, if not for the meets I attended. Inspiration is a two-way street, I guess. Watching those boys in their determination to be the best would inspire anyone: training since June no matter the weather conditions; getting up early even on Saturdays to run; putting the team's goal above personal ambition; running, running, running. If you're not a runner, you've no idea what kind of discipline it takes. Someone once said: life is short, but running makes it long. So thanks guys for the award, but more importantly, for your dedication, grit and success--an inspiration to us all.

When I think back to the day I left the hospital and went straight to the Davy v. Goliath meet against a school that almost never loses in any sport, I'm amazed at how far I've progressed. That was 17 days post-transplant; today is Day +73. I can't say I have all my energy back, because I don't. Some days are better than others but lucky for me, to be alone and palely loitering is not a threatening or depressing state. I enjoy the peace and quiet. I fill the time reading, writing, knitting, walking, thinking, managing household affairs. Napping (deserves its own sentence). If I am enthralled to anything, it's my illness/recovery, my personal belle dame sans merci.

Which reminds me how much I rely upon the Leukemia & Lymphoma Society's Discussion Boards for information and inspiration. It's a place I can go and hang with others who have (or take care of people who have) life-threatening blood disorders. Many of those posting have had transplants and are at various stages of recovery. Some are long-term survivors. Some of the stories are unbelievably sad; but many are hopeful, inspiring and even at times, funny.

Inspire or be inspired. Either way, you win.

Thursday, November 15, 2007

No News of Note

Skimming an article yesterday entitled something like "10 ways to a better blog" put me in mind of similar articles ticking off ways to enhance your sex life, your skin, your food, or whatever. One recommendation was to post every day. Every day? Even if you have nothing to say? Apparently, there are bloggers out there who do so. I promise you, I will only post when I have something to say relating to my health. If I were to use this blog as a soapbox, you'd all be sorry. I've been known to rant.

As my title so clearly (and alliteratively) suggests, I don't have much to report. But now that I'm writing, I can't resist the urge to go on. Forgive me, oh Editor of the Infinite Blogosphere, for tossing in a few more needless words.

Tomorrow will be 10 weeks since I had the transplant. I am still standing, and walking, and doing a lot of things, some allowable, some not. My blood counts are good, although the pesky white count bounces around a lot which I attribute to those little boys having fun in my marrow. I've actually felt almost completely normal, and do forget sometimes that I'm supposed to be on high alert 24/7. So far, my lapses haven't made me sick, for which I am grateful.

One symptom I've noticed lately is that I seem to be clairvoyant, something I don't even believe in. Does having someone else's blood coursing through your veins boost the so-called sixth sense? I will make further observations on this unnerving phenomena and get back to you. There, you see how silly blogging can be when you have little to say.

Monday, November 12, 2007

News Briefs from the Knit-Wit

The blahs have been banished, possibly because my weekend was so busy I didn't have time to pay undue attention to my body's efforts to unravel my mind. On Friday, I started two projects: recovering the kitchen chairs and knitting a sweater. As for the chairs, I got as far as removing one seat, measuring it, estimating how much fabric to buy and buying the fabric. And if that wasn't excitement enough, my friend Patty gave me a long-awaited knitting lesson. Sometime over the summer, we'd picked out a pattern, and Patty donated yarn to the project and knitted a sample to check the gauge. Two and a half months and a transplant later, I finally got started. Patty spent a couple of hours demonstrating the various stitches and techniques, which I thought I understood. Wrong. Like the (Greek?) goddess who knits and unknits time, I spent Friday and Saturday knitting and unknitting and reknitting. In theory, I'm knitting myself a sweater, starting with the back. Maybe I'll just knit a placemat.

Another interesting thing that happened Friday was that my doctor decided to decrease my immunosuppressant drugs based on their levels in my blood. What I don't know is whether this decrease (which is sizable) is the start of the tapering of these drugs that usually begins around 100 days post-transplant. I'm only 66 days post, so it's early for that. I'll ask the doctor when I see him this week. One of the issues with tapering the immunos is that graft versus host issues can start rearing their ugly heads. In other words, the new white blood cells (graft) could start picking on my organs (host). On the positive side, my immune system, currently as effective as a 2-month old's, can begin to rebuild.

Saturday's blah-chasing event was our trip up to Maine to watch the East Greenwich HS Cross Country team compete in the New England Championship race. Ranked 4th, they ended up placing 2nd by one point. Mark ran a great race and placed 14th out of a field of over 250 runners. On a personal note, due to the cold weather and my being bundled under many layers, you couldn't tell I was bald and wearing a surgical mask.

Sunday I spent reading the New York Times and knitting. Whereas I finished the Times, the knitting never ends.

Thursday, November 8, 2007

The Blahg

I'm feeling blah today. Nothing serious. A little nausea. I think I've been dehydrated, so I'm trying to up my liquid intake. Yesterday was my weekly clinic visit at Dana Farber. My CBC looks very good. I am now in the normal range for white blood cells and platelets. The meeting with my doctor was brief, since there was nothing to discuss--a good thing. Instead of blah-blah-blahing, I'm going to keep this post brief, too.

Tuesday, November 6, 2007

Still Paying the Piper

Usually after 8 hours of sleep I wake up raring to go downstairs and make those PB&J's for the boys' lunch. After I've brewed some Costa Rican coffee, of course. Today was different. I felt queasy. I felt like pulling the covers back over my head and sleeping some more, if only to ignore the blahness. But get up I did, because that's what mothers do, even mothers 60 days out from transplant. The problem with feeling good is that you tend to do more than you should. I am notorious for overdoing, and Sunday I pushed the envelope. Now I'm paying for it.

The weather isn't helping. It's cold and dark and rainy, and the leaves keep pouring down. Leaves I want to rake but can't. Normally, I'd take a morning walk, but that's out due to the conditions. I could work on some writing projects. I'm almost tempted to turn on the TV and watch whatever garbage they're churning out. I could continuing reading "Return of the Native." Decisions, decisions. I think I'll go downstairs and curl up with Turbo and Asta and snore the day away, dream about chasing rabbits. That would of course be illegal because I can't have direct "contact" with the dogs. But it sounds so cozy.

Tomorrow's clinic day in Boston. I have no symptoms to report (the blahs is not a symptom) so it should be a quick visit to the doctor to discuss my labs. I'll post the results on Thursday.

Have a politically satisfying Election Day. I'm pretty sure they cancelled it here because there's nothing to vote for.

Monday, November 5, 2007

Wanted: Sleep

I'm sooooo tired today, but I know the reason. Or I think I do. No, I'm not worried I have an infection lurking, that my graft is failing, that I sucked in a mold spore that's about to turn my body into a fungus factory. Those are just a few of the run-of-the-mill worries I live with day-to-day. This morning I feel as though I ran a marathon yesterday, or at the very least a 5K. I wish I could say I had. (Some day ...)

Physically, I did a lot of standing, about 1.5 hours outside and another 45 minutes inside. I also did a fair amount of walking, maybe a mile or more. Then, there was the jumping up and down, screaming and clapping which sucked the rest of the energy out of me. Emotionally, I was nervous, excited, overwhelmed by happiness, and my eyes even teared up at one point.

No, I did not go to Wal-Mart to purchase the $199 computer that's really an Etch-a-Sketch taped to a toaster over. I went to see the East Greenwich Boys Cross Country Team become first-ever State Champions. I watched Mark come in 6th with a time of 16:16.7. I hovered at the door of the gym sneaking peaks at the awards presentation, trying to stay out of harm's way. East Greenwich High School, one of the smallest schools in the Rhode Island, State Champs! That's when I became a bit teary. Of course, at that point, I was completely exhausted. Exhausted and proud. Happy that I was there, witnessing that special moment.

Thursday, November 1, 2007

Halloween Horror: CSI East Greenwich

Sketchy reports continue to trickle in regarding the possible homicide that may have occurred in bucolic East Greenwich, Rhode Island on, of all days, Halloween. No body has been discovered so far, only the tattered remains of a bloody Boston Red Sox sweatshirt. A spokesperson for the Boston Police Department confirms that 7 persons last seen at this week's World Series celebration have indeed gone missing. Signs of an epic struggle, including blood and chocolate smeared on a white tile floor, were discovered at the scene, a colonial-style house on sleepy Moosehorn Road. All five residents of the house were interviewed by police detectives, and four of the five have solid alibis placing them in other locations during the estimated time of the alleged attack, although all admit to being NY Yankees fans. Only the Lady of the House, a veritable recluse due to a recent medical procedure, was home all day. She claims she didn't hear a thing, spending the morning in the upstairs office writing her blog, and then taking a long nap. Preliminary DNA analysis of the blood indicates it came from two unrelated males. Police hypothesize that a home invasion might have taken place, and that the two intruders got into a fight, possibly over Kit Kat bars. This is of course pure speculation and cannot be confirmed at this time.

The Lady did it. In fact, the notion of getting away with murder has long intrigued this (so-called) woman. It was her oncologist (a Red Sox fan, by the way) who planted the seeds for the dastardly deed during her recent visit to him in Boston. It seems that her double umbilical cord blood transplant has created an unusual (some would say freaky) situation in her blood. Since both cords came from boys, and recent bloodwork shows none of her own blood exists any more, she has 100% male blood. Just think, her doctor said. You could murder someone, and if you struggled with your victim, and if you bled, you would be ruled out as a suspect because you're female!

Readers, it's really true. Not the murder of course, but the fact that the blood in my veins is now male. Harry asked me if I have a strong urge to chop wood. I have been having strong urges NOT to do any domestic chores, and for the most part, I haven't done any since they're forbidden by my condition. Now we know what my "condition" is. I have manly blood.

Wait, there's more. Two weeks ago, my blood was 66% cord #2 (which hailed from Colorado) and 33% cord #1 (from Down Under). There was still 1% me in there. Well, it seems the Colorado blood has cooled off and is now tanking, just like the Rockies. The score is now 55% Colorado, 45% Australia. Can the Aussie make a comeback and win?

Ripley's Believe It or Not just called ...

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

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.

Saturday, September 29, 2007

A Quiet But Glorious Day

I had planned to regale you with all the messy details of yesterday's platelet infusion gone bad. But I woke up this morning (always a good sign in my book), feeling grrrreat. It was a beautiful Fall day, and all I wanted to do was make myself a steaming cup of Costa Rican coffee and read my book while everyone else was still quietly asleep. Ah, my first Saturday morning of freedom.

So I decided to scuttle the negative and dwell on the positive. Hmn, methinks the cord blood is perhaps making me a wee bit sappy. I'll happily tell you the platelet horror story in person some day, if you really want to hear it, or you can check with my friend Patty S. who witnessed the ordeal. Best give her a few days to process the nightmare, though.

Great news! I think I'm getting used to sitting around on my butt all day reading and eating bon bons. It's a lovely way to pass the time. Most importantly, today I've felt really good all day, almost normal. In a few minutes, Marty and I will go for a walk with the pups. Marty will make dinner. Marty will clean up after dinner. Marty will offer to bring me more bon bons, perhaps some herbal tea, dear?

No, not a bad day at all.

Friday, September 28, 2007

Wimpy Woman

Imagine that you feel pinned to the bed, a body-sized steel plate pressing down on you. Or that all your bodily fluids have been replaced with one of nature's heavier elements, one you never heard of, substantially heavier than lead. You can't do a thing, and you don't care. You just take up space and wonder how long the ghastly feeling will last.

This is how sheer exhaustion feels, how I felt most of Thursday. Fortunately, I began to feel better by late afternoon. But I am now forced to admit that wonder woman is dead, or at best, packed in mothballs. In her place is wimpy woman, a wan creature who cares little for perfection, feels close kinship with slugs and sloths, and who is learning that doing nothing can be a good thing.

I wanted to tell you about the bad reaction I had today to a platelet infusion, but I can't. My battery is just about out of juice.

More tomorrow ...

Wednesday, September 26, 2007

Home Sweet Home

I was discharged on Monday. Here's how I did it.

Beginning last Friday, I started making suggestions to hospital staff that I thought Monday would be an acceptable day to release me. My ulterior motive was that I wanted to be home to see the East Greenwich Cross Country team (and my darling sons) make history by defeating Hendricken High School, a team that hasn't lost a meet since 1978.

By Monday morning, the nursing staff was confident I'd be discharged. The doctors, however, who hadn't been around all weekend, were less convinced that this would actually happen. When they moved into my room en masse, I was projecting utmost confidence and, I hoped, a picture of health. They asked me a few questions, and appeared satisfied I could go, as long as Dr. Antin (my primary doc) approved. He did.

The discharge took forever, and I feared we wouldn't make it to the meet in time. But we did. I'd just had a cord blood transplant, but witnessing the E.G. boys make history seemed the bigger accomplishment.

I'm delighted to be home, sleeping in my own bed, eating tasty food, interacting with my family. My dear friend Dianne is here helping out, doing her best to keep me from doing too much. Sad to say, this sometimes involves tying me to a chair, forcing me to nap at gunpoint, and removing sharp knives from my grasp, an extremely unsafe maneuver.

I hope to post here a few times per week to let you know how the business of growing an immune system from scratch goes. Ain't going to be easy.

Sunday, September 23, 2007

Let Me Outta Here!

In each of my extended hospital stays, I reach the point where I suddenly feel as though I can't take another minute being locked up. Ladies and gentlemen, I've reached that point.

The thing is, I know I'll be discharged pretty soon because my counts continue to rise. Before I was admitted, the nurse told me that after 2 days with an ANC over 500, I'd be set free. Well, I've had my two days over 500 and now I'm ready to leave. Did you hear that: I'M READY TO LEAVE.

What's the rush, you might say? Tomorrow, the next day, the next; you know you're getting out sooner or later.

Naturally, I want sooner. I want tomorrow. I want this minute.

I just can't deal with the rules anymore. Case in point. I've been eating less and less because the food doesn't even deserve to be called food. So,I asked Marty to sneak in a bagel for me. It was immediately confiscated. I can only have the bagels they bake here, and you can just imagine how little they resemble bagels.

Okay, whining's over. I'm planning my escape for tomorrow. I might be using in-house bagels to knock the nurses out.

Saturday, September 22, 2007

Star Patient or Just Staying Alive?

Okay, so I engrafted more quickly than they predicted. I didn't develop the dreaded mouth sores that end up putting patients on TPN (artificial food--a bag of yellowish liquid they infuse directly into your body, no chewing necessary). I didn't develop pnuemonia. I did spike one neutropenic fever, a really good one. Is this because I am special in some way? Hogwash! I played by all the rules. I did everything they told me to do. They were pretty sure they could save my life, so was I going to argue over taking handfuls of gut decontamination pills? Sure, they're big and nasty and they sit in your stomach like a huge wad of high density sludge. No one wants to take these mothers, but who wants to risk contaminating their gut?

I knew eating would start to feel like slicing off little bits of my body and throwing them on a composte heap. Not pretty. But I forced myself to eat some little thing at every meal. I dreaded being hooked to that TPN bag filled with unnaturally colored, liquidy goo. I was determined not to be. I did the obsessive hand-washing bit. I did my exercises, though with less gusto over time. Why was I so compliant? Why was I so willing to push "my way" to the side and embrace "their way"? Had I been brain washed?

No, I simply want to live. I want to go downstairs in the early morning light and sip coffee in front of the computer, watching the birds find ways to jump-start their new day. I want to lie in bed and watch my husband sleep like a baby (unlike me who sleeps like a battle's raging). I want to hear my daughter talk about her classes, about ideas she has for an ethics paper. I want to listen to my oldest son discuss race strategy for the big meet Monday. I want to talk baseball with my youngest son. I want to laugh at how ridiculous the dogs look after their shearing. There are lots of things I want to do, but doing just the ones I mention would make me very happy.

As much as fighting the power has its appeal, staying alive is more compelling. I have a long way to go before they pronounce me officially cured (and to be candid, I may never be cured), but I'm getting another shot at it. So, short of cheering for the Red Sox, I'll do everything they tell me to do.

Friday, September 21, 2007

Defying the Odds

White cell production continues unabated. More importantly, today's ANC (see yesterday's post) increased four-fold. One of the doctor's assistants came in today and said I'm the fastest cord grafter they've ever seen here at Dana Farber. She did suggest my size may have something to do with it. Dr. Antin says I shouldn't count my chickens yet because my counts could plateau for a while. I told him that as long as they plateaued at ANC 500, I didn't care, because I'd be out of here.

Surprise!!!! Mariel flew in from Phillie today to spend the weekend. She's here in my room right now, on the phone with Mark discussing running strategy. Marty's uncomfortably snoozing in a chair.

The better I seem to be doing, the harder it is to be trapped here. I need to be amused, and you, my readers, can help.

What day do you predict I'll go home, and why am I defying the odds?

Thursday, September 20, 2007

Production Starts Rolling Out the Whites

Time to break out the bubbly, although around here, that means taking out a carton of milk and shaking vigorously.

There's movement on the white blood cell front. For three days in a row, the white count has been bumping up a bit. It's impossible to know at this point if it's the Australian Whites or the homegrown varieties that are in production. Could it be North Fork, Long Island? The famous Napa-Sonoma regions of California? Iowa? (Rebecca: if there's Iowan wine, I expect a bottle of it, especially if there's any hint of corn on the label).

They won't let me out of here until my Absolute (no, not the vodka) Neutriphil Count is at least 500 for two days. Today, it was 48.6. Fortunately, once these suckers get going, there's no stopping them. It could happen this weekend!

But they are baby cells, and as such, often take longer to multiply. What with naps, diaper changes, and "staying on goal" issues we might be looking at a week.

There are still many challenges to face. The hospital part has been the first hurdle.

Ah, I can almost smell the fresh air.

Wednesday, September 19, 2007

Fever of 103

The long-awaited neutropenic fevers have settled in. This is the body's mechanism that kicks in when white counts are severely low. Basically, the body heats itself up to try to fry the bad guys. Usually, the fevers stay fairly low, hovering around 100 degrees. But sometimes they spike, and that's when the medical team swings into action, drawing blood, doing cultures, taking x-rays.

Last night, my temperature was 103 point something. Fortunately, Marty was there to hold my hand. This morning at 5, it was 100.1. This is probably what I'll be dealing with for the duration.

Which is why I was so pleased that no fewer than four of you left comments on yesterday's post indicating a favorite quote. That means I didn't have to do my early-morning research, which given the way I feel, would have been challenging. This means I won't have to do it for the rest of the week! Keep those quotes coming in.

Well, they just made my bed, so I think I'll crawl back into it. I'll try to write more later.

Tuesday, September 18, 2007

Plog Gets Bogged Down in Intestinal Distress

Marty says I can't disappoint my cheering squad, and that even though I feel like I've swallowed a large object no amount of Maalox will budge, I must make an entry in my blog. It will be short.

I will probably be receiving platelets every other day. On the days I don't get platelets, I'll be getting red blood cells. My white cells continue to remain at rock-bottom levels. They are also pumping me with potassium and magnesium, which have been leached out of my system by the chemo.

It's getting a little dull around here, but dull's better than too much excitement. I continue to look forward to your cards, calls, visits, emails, and blog comments.

One way I amuse myself around here is by posting a quote of the day on a whiteboard hanging in my room. The staff looks forward to it. If you'd like a shot at having your favorite quote spend a day on my wall, put it in a comment. You must give attribution (that is, who said it). Your name will appear below the quote (as sent in by ...).

Today's quote is
"What is written without effort is in general read without pleasure."
--Samuel Johnson

Sunday, September 16, 2007

What Did I Do To Be So Black and Blue?

I'll tell you what I did. I willingly allowed my body to be blasted with Love Canal's leftover toxic waste and then some. My blood report has AB Normal written all over it. In theory, if I were to cut myself, I'd bleed to death due to lack of platelets. But then, I have very little actual blood so I'm not sure what, if anything, would leak out. Apparently, being bloodless does not affect the desire to write about one's misery. Plog on ...

I was having a hard time mustering the strength to do anything this morning. My nurse breezed in and announced I had 3000 platelets (normal range is 150,000-400,000) and would have an immediate transfusion, probably around the time breakfast arrived. Eggs topped with mellow yellow sauce, anyone? The doctors came in and practically strip-searched me for evidence of bruising, a classic hallmark of very low platelets. They were disappointed. They planned to pre-medicate me to the max so as to avoid a nasty reaction like the one I had the other day. I broke out into exactly one hive (right in the middle of my forehead), so the transfusion was a breeze. My breakfast was quite tasty, too.

But my mood was black and most definitely blue. Today was the day of the CVS-Providence 5K, a race I competed in last year, just two months after my final chemo treatment. I ran that race because I could, because cancer hadn't vanquished me. Instead of joining thousands of runners in Rhode Island's capital city (including my sons Mark and Harry), I was to spend the day nestled in my bed like a Faberge egg. The day was getting more pathetic by the minute.

Here's what I did. I donned my race shirt from 2006 and vowed to run the race in 2008. I also ate a Kit Kat bar. So there!

I have some very sad news to report. Stacie Edmonds, a woman I know in East Greenwich who was diagnosed with brain cancer shortly before my leukemia diagnosis, died last week. We both had boys on the track team, and would sit together at various track events and banquets. We were the two bald ladies proud of our sons' accomplishments. Stacie leaves behind a husband and two children and many grieving relatives and friends. Peace, Stacie.

Saturday, September 15, 2007

Not-So-Mellow Yellow

Yesterday, my low platelet count meant I needed a transfusion. I've had many of these transfusions throughout the course of my leukemia. I refer to it as "mellow yellow" due to its rich caramel hue.

As with any blood product, you can have a reaction to it, from mild to severe. After all, it's someone else's fluid, not yours. The mellow yellow I received left me anything but mellow. First, I developed hives all over my body. Then I started coughing, and my nose became totally blocked. The nurse quickly gave me various antihistimines, which cleared up the worst symptoms, but I felt pretty out of it the rest of the day. I even developed a low-grade fever.

So, my friend Mecca who took the train from NYC to Boston mainly watched me doze. We were able to talk a bit during my more coherent moments.

I had spent the whole day looking forward to the Yankee-Red Sox game. Marty and I watched the first five disappointing innings. I could barely stay awake. Marty went home and I left the game on just in case the Yanks or I rallied. Well, I slept through the rally, but at least it happened. Today's a day game, so I should be in better position to watch it in its entirety. I won't be getting platelets today so hopefully my body will cooperate.

Just found out I'll be getting red blood cells today. Perhaps I'll get a boost.

Friday, September 14, 2007

Sunrise Over Boston

It looks like today will be one of the ten best days of the year. From my viewlet, not a cloud can be seen. It's supposed to be cool and dry, although that I can't confirm. You don't think they'd allow windows to be opened around here, do you? Mine is bolted shut. It's perfect baseball weather, as a matter of fact. And speaking of baseball, because you knew I would, the Yankees are coming to town. Three days of games between the Evil Empire and Red Sox Nation. (Last time I checked "empire" trumped "nation.") I'll be able to watch every game from the discomfort of my hospital bed.

The day might have started better, but then again, it could have been worse. At about 5 pm, the nurse comes in to draw blood and the aid takes vital signs. I try to stay very quiet, clinging on to sleep with all my strength. The nurse asks questions, which I don't answer. I don't want to be rude. I manage to fall back to sleep, but wake up around 6 pm with leg and hip pain due to a certain drug I'm taking to promote cell growth. I ring the nurse, who scurries in to hear my complaint, and then scurries out to get me something for pain. In the meantime, I sit up and look around for a glass of water, which I promptly knock over. Then it hits me--the relentless nausea. I grab a bucket and go through the motions. Meanwhile the nurse is back with pain meds, which I cannot take due to the nausea. The nurse rushes out to get some anti--nausea meds, and with luck, it will improve from here.

Today is my sixteenth day in the hospital, 7 days post-transplant. I am very fortunate that I haven't developed any fevers. I'm still eating fairly well. My sense of humor is badly bruised (damn those low platelets), but every so often it surfaces.

Carpe diem.

Thursday, September 13, 2007

Ploggin' On

Today the physical therapist arrived with some alternative exercises I can do to keep from turning into a pile of jelly. Frankly, these new offerings take almost no effort. One could easily fall asleep in the midst of them. The exercise bike has been replaced by a set of pedals that offer no resistance. You sit in a chair and place your feet on the pedals,and then you make some attempt at a pedaling motion. Pathetic. The therapist gave me a handout on exercises I can safely do in bed or in a chair. They're so safe and so effortless, you need a partner to check on whether you've inadvertently fallen asleep.

They started giving me a growth stimulating factor to boost white cell production, but it makes my legs, arms and joints seriously ache. This is mainly a problem when I want to go to sleep. Fortunately, they are very quick here to offer serious pain-killing meds. Suffering is kept to a minimum.

I've been here 2 weeks. Luckily, I haven't developed any fevers or opportunistic diseases. My days are all the same, but I'm not complaining. I'd rather have it stay nice and boring.

My only escape is dreams. Since I need to spend a lot of time sleeping to rebuild my blasted cells, I take full advantage of this activity.

Wednesday, September 12, 2007

The Bike is History

It's official. My platelet count has dipped below 35 so I'm not allowed to use the stationary bike anymore. It seems the docs are worried I might fall off it and bruise myself to death. What a way to go. Low platelets means that my body can't stop itself from bleeding. Once I fall below 10 platelets, they'll infuse me with some. The bike was wildly uncomfortable anyway, but it was a way to get some exercise. Maybe I'll start marching in place.

I can still use my arm weights, but I can't drop them on my toe. All sharp objects have been removed. If I had any hair to shave, I'd not be allowed to shave it.

With the drop in platelets, there's a corresponding drop in white blood cells. I've only got a handful of those. This condition is called neutropenia, and it calls for all sorts of safety precautions. That's why I'm in this special room with filtered air. That's why I can't eat fresh foods such as salad or fruit. Everything has to be cooked until it lacks flavor. My appetite is shaky enough as is.

I feel pretty good today.I finished one book this morning and plan to start another one after lunch. The chemo fog has lifted sufficiently so that I can concentrate fairly well. I do drift off to sleep suddenly, which is a good thing. I wish I could laugh more, but amusing things are severely limited around here.

I want to personally thank the Yankees for winning so many games the past couple of weeks. I look forward to this weekend's match-up between the Bombers and the Sox. Of course, being in the heart of Red Sox Nation, I have to be careful not to alienate my caretakers. They might take away the TV set claiming it's suppressing my red cells.

Tuesday, September 11, 2007

The Falcon

After I've exhausted most of the other activities in my room--and this does not take long--I stare out the large window to observe the weather, the pigeons, the colorful row houses, a swath of trees, and the various mechanical appendages that perch on top of the area's medical buildings. Every so often, a falcon swoops down and spends some time seemingly observing the same things I'm seeing. Only, he's probably scanning the area for lunch--a tender tasty mouse or a neurotic spinning pigeon who seems to have forgotten the term "survival of the fittest." So far, I haven't seen any squirmishes, although I know it's just a matter of time. My lunch, whether I want it or not, is delivered sometime between 12:30 and 1:00 pm. Unlike the falcon, my food must be cooked beyond recognition to kill any lurking bacteria. No pigeon pie for me, unless it's thoroughly cooked.

The doctors say all continues according to plan. Aside from occasional nausea and a case of the blahs, I'm doing alright. By tomorrow, I should have no white blood cells.

Let the obsessive hand washing begin.

Monday, September 10, 2007

The Waiting Game

I had a dream last night in which I became a part-time patient. As long as I arrived at the hospital by noon, I was allowed to be on the outside a certain number of hours each day. The problem was, I never seemed to be able to get back in time, so they revoked my privileges.

Most of the day, I wait. I wait for meals to arrive, pills to appear, nurses to hang bags of meds, doctors to shuffle in with nothing much to say. We're all waiting for my blood counts to go down (they are), and for my new cells to engraft (not yet). Something else we wait for, but about which nobody speaks, are fevers to develop, infections to creep in, bacteria and fungus finding a microscopic chink upon which to gain a foothold. If I'm lucky, none of these things will happen to me. But they are all possible. I have virtually no immune system, although I am taking prophylactic drugs to come to my rescue if need be.

Fortunately, visitors arrive to help break up the day, to take my mind off the waiting. Without them, I'd be a basketcase, wishing I were sitting on my front lawn sipping tea, or watching Mark & Harry run at Goddard Park, or taking Turbo and Asta for a walk, doing anything, anywhere that wasn't within the confines of this small sterile room, my prison.

Sunday, September 9, 2007

The Aussie Connection

Some of you have been wondering about references to Australian cord blood. One of the two units I received for my transplant was flown in from Oz. I'm pretty sure the other one was from the U.S. At some point, I'll have Australian blood flowing through my veins. I'll want to be stocking up on vege-mite (sp?) and Peter Carey novels. Anyone for Waltzin' Mathilda?

Things are pretty dull around here, which is a good thing. May they stay that way. I just took a "walk" out in the horseshoe-shaped pod, about 50 feet total back and forth back and forth. There are 8 other transplant patients on the pod, and a few non. We pretty much stay in our rooms because there's so little walking space, although I did see another woman out there who appeared to be about my age. I have to wear a serious mask when I'm out there, plus gloves. A little change of pace is good.

Marty will be here soon. Phone calls drift in. Still, the day has no shape and just spreads out over everything. I may have to break down and start watching TV.

This is my 10th day here.

Saturday, September 8, 2007

I'm Back

Thanks to Marty, I have an inkling of what transpired the last few days. Strong stuff. Happily, I am back, and will try to write a short entry. Nausea remains a problem, so the old heave-ho might cut this short ...

I don't feel quite like myself, but then I am not quite myself. I'm about 2 cups worth of other beings, and once they set up shop, they will be even more of Them. This is a very odd feeling, probably how people feel who've had organ transplants. Now the waiting game starts. The baby cells must migrate to my bones and start cloning and differentiating--all those things that cells do best. This process can take anywhere from 2-4 weeks. Patience is a virtue but it's never been one of mine.

I'm trying to force myself to eat whatever will go down and stay down. I just finished a bowl of corn flakes, which put me in mind of an off-off Broadway show called Angry Housewives. In the play, the mother screams at her kid, who's dawdling over breakfast: eat your f*cking corn flakes! I think of that line every time I eat corn flakes, and it always brings a smile. I need smiles.

Company has arrived--Mark and Marty. Gotta run.

Friday, September 7, 2007

Things you can do in 15 minutes

A short list as compiled by Marty

Have your 15 minutes of fame.
Get a car insurance quote.
Take a power nap.
Get a tan.
Take a coffee break.
Get an oil change at JiffyLube.
Watch the winner cross the line at a 5k, on a really good day.
Get halfway through a standard sitcom, so you can go get a snack.

Watch an entire portion of Umbilical Cord Blood Cells drip through a tube into a loved one's heart, to save her life.

Watch the second portion, 4 hours later.

Day minus 1, the real nitty gritty

It's actually early Friday morning, Day 0, but since Patty has been flattened for the last 24 hours, I, Marty, her B team, will give an update of yesterday's activities.
That's about it.

Now, since I am reporting as an observer, and since I, as Patricia's husband, feel particularly ineffectual through all this, my descriptions of yesterday may be somewhat dark, but I feel it safe to say, whatever I saw, the reality was worse.

Patty's nausea wasn't that morning sickness queasiness that has everyone else in the room smiling, or the nausea after a night's cavorting where you remember thinking "I really shouldn't have had the wine after drinking two cocktails, but it tasted so good with the food" type of nausea. This was her whole body trying to empty out a stomach that had been emptied out during the first 5 minutes of the day, yet continues to clench and unclench, clench and unclench, for hours without end. This is the nausea where a sip of water seems a foreign substance to your stomach, and it responds with gut-wrenching spasms. Nor is her headache the headache of your boss dumping on you when his boss dumps on him, or the kids yelling in the pool, or the music being too loud. This is a headache that refuses to let her sleep. She starts to drift off with the help of drugs, and the headache keeps her just enough in consciousness to know she is still in pain, and still nauseous.
The shakes yesterday weren't vanilla or chocolate. They were her muscles reacting to all the drugs in her system. The nurses assured us these were only slight tremors, and would go away. Only slight tremors. After watching Patty go through the first dose of the rabbit drug, the offhand remark "only slight tremors" is actually reasuring.
Amateur writers tend to overwrite: we try to come up with more exotic or unusual ways of saying or describing things, and we repeat them over and over. One of these phrases often over-used is "blessed sleep." Well, that is a cliche that describes a special type of sleep perfectly. That is the sleep full of wonderful dreams, where the sleeper is smiling and almost purring. That is the sleep where the sleeper awakes refreshed, stretches, looks out the window, ready to go head to head with the world for another day. A sleep that has you feeling you really are blessed.
That is not the sleep of day minus 1. The sleep of day minus 1 is just unconsciousness, if you are lucky enough. It is the body not understanding the onslaught of multiple poisons and toxins that are the treatment for the disease. It is your body telling your mind to try and shut down. In this state of sleep, there are no smiles. I look at Patty's face, and see her eyelids tensed as they attempt to deal with the aching pain in the temples. The edges of her mouth appear clenched to keep from gagging. During the short periods when the secondary drugs do work, her face muscles all relax and her whole body goes slack. For too short a time, I'm afraid. She drifts in and out, not feeling the passage of the time, not interpreting the data her senses are giving her. Trying not to feel.

I remember back to one of our first conversations with Dr. Thomas, when he was discussing treatment options. He said that best case scenario has days and months of hell, followed by cure. This was one of those days.

Wednesday, September 5, 2007

I Wanna Be Sedated

Rabbit Redux. The best thing about the third treatment is that they gave me so many drugs to head off any nasty side effects the rabbit might bring, I was more or less comatose for the entire afternoon. I was a boneless pile of mush, which was fine by me.

This morning, I woke up with hand tremors and a feeling that my body had been drained of all its blood and replaced with cotton. The tremors are likely to be drug-related, according to the docs. The other sensation is hard to explain and very annoying. I feel I'm not all here, and I guess I'm not.

It's Day -2 for transplant, which will probably be anti-climactic. I'll receive the stem cells in 2 batches, 4 hours apart. Pretty surreal.

That's all she wrote.

Tuesday, September 4, 2007

A Day in the Life

I decided to write this in the morning before I receive any toxins. Here's what a typical day is like in this joint.

Sleeping has never been my forte, so you can only imagine what it's like to sleep here. My room is right across from the nurses station, and they do a lot of yaking and laughing at night. They must be bored. At 5 am, my nurse arrives to draw blood. An aide tags along to take my vital signs. If I'm lucky, I fall back to sleep. Today I was lucky, but the machine I'm attached to (I have a constant saline drip) started beeping at about 6:15. Goodbye Shut-Eye.

I peer over at my bedside table to see two medicine cups filled with pills. I dutifully swallow all of them (estimated 30-40 pills per day). Then I do some mouthcare involving nasty rinses. This will hopefully ward off mouth sores later on.

I actually receive a cup of coffee at 7:40, woo-hoo.

After a short stint at the computer, it's time to get moving. I write a Quote for the Day on the white board (today's: "To be worn out is to be renewed."--Lao-tzu). Then I do my stretches and toning exercises, followed by 15 minutes on the bike.

Breakfast arrives, followed by a visit from the nurse or nurses. They bring me even more pills and discuss the day's "plan." Then the docs arrive. Today there were 5 counting the pharmacist. I've decided to stand while they speak to me because (a) I need more standing time and (b) I want to be at their level, literally and otherwise. Apparently, I'm the only person who ever does this, but who cares? When a visitor enters your house, you stand to greet them, and you only sit down when they do. Mostly we Q & A, and then they do the stethoscope thing. Bye.

After they leave, it's shower time, but since I have a catheter hanging out of my chest, I have to get someone in unhook my lines and put a special covering on the whole piece of equipment. Of course, this someone has to come back in and remove the covering when I'm done.

Then I'm free to do what I want until I get my chemo, which comes around noon. Lunch comes; visitors come; I use my laptop; my phone rings; I try to nap (impossible due to the many many disruptions). It seems every time I close my eyes, someone wants to give me meds, change my lines, take my vitals, check my bathroom output (yes, all bodily fluids are carefully noted and measured). No rest for the weary.

I rarely leave my room, because if I do I must be masked and gloved and it's really crowded out there. One advantage of going "out" though, is that I get to see what people look like without a mask. Everyone who enters my room must wear a mask and gloves, so I only see the top third of everyone's face. Sometimes I don't even recognize the people who've been in and out of my room all day.

And so it goes.

PRIZE!!! The first person to tell me who sprinkled the above line (and so it goes) through one of his most famous novels wins a line mention in my Plog.

Like Ol' Man River, I just keep rolling along.

Monday, September 3, 2007

Blame it on Drugs

Well, I've possibly developed dyslexia, and since it just starting occuring since I've been in the slammer, I'm blaming it on the drugs. I know what I want to say, but I'm having trouble writing what I want to write. Reversed letters, missing letters, added letters that don't belong. Then there's the getting tripped up on homonyms (right for write--I just corrected that one a few sentences back). This may not matter to you, dear reader, but to me it's one more sign of my temporary decline. Spelling, grammar, usage, the bon mot--these all matter to me. I've given Marty permission to edit the Plog, though not its content.

At least I can ride a bike without falling off it. Yes, the exercise bike, the one that was delivered when I was being prepped for the rabbit drug last Friday. Well, this morning I was feeling about 85-90%, so I decided to pedal for 15 minutes at a relaxed rate. Near the end of my ride, I had a visitor, Lizanne from Costa Rica. She's in town settling her daughter at Tufts, which is somewhere around here. We had a lot of ground to cover because we haven't seen each other in 2 years. She brought me 4 bags of Costa Rican coffee, my preferred brand.

Speaking of coffee, the so-called "coffee compromise" isn't working AT ALL. Today my 7:30 hand-delivered cup didn't arrive until my breakfast did, just before 9:00. That's right, I had two cups of coffee on my tray. I WANT HOT COFFEE. I don't want two cups of warm coffee. So I told my nurse I want to see the Nutritionist who thinks a single-cup coffee maker, one that ONLY I TOUCH, puts me at more risk than brewing it in the public pot. I tried to be nice. I really did, but now the gloves are coming off. In defense of the nursing staff, 7:30 is probably one of the worst times to get a cup of coffee for a poor transplant patient, because it's shift change. Okay, I'll stop. At least if I go off on a rant, you'll know I'm doing okay.

The rest of the day was uneventful, and pretty quiet because of the holiday. No noisy gangs of roving doctors/interns/residents/physician assistants jockeying for position out at the nurses station. I'm sure the nurses enjoyed it, too. My blood counts are still passable (though dropping); some of my chemicals are out of whack (to be expected); no nausea today (although the little patch they put behind my ear migrated to the middle of my neck during my shower so I'm not sure if it's lost some of it's efficacy).

I had a nice visit with Harry W. and his wife this afternoon, and of course, Marty was here for several hours.

Tomorrow the silly wabbit weturns (calling Elmer Fudd!), so who knows what or if I'll write. Do bunnies write?

Sunday, September 2, 2007

Another Bullet Dodged

Today was day 2 of the pesky wabbit. Since I felt pretty low already, going into to the infusion was worrisome. The nurse decided to mix up my pre-meds, giving me a different steroid and some hydrocodone to relieve my headache. I think it went a lot better than the other day, where I had spent the evening, all night, and into the early morning down the bunny hole. It must have seemed bad because Marty spent the night propped up in a highly uncomfortable beach chair.

After a slow start to the day, I did improve somewhat. I was able to shower,eat breafast, field phone calls, etc. Just as company arrived (Mark, Laurie, Harry) I started feeling feverish again and crawled back into bed. I felt bad that I didn't make conversation with anyone, but I think it was pretty obvious I was not in a chatty mood. I'll call the boys later to reassure them I'm alright.

Tomorrow, I just get one chemo drug, and this one doesn't do an number on me. Or at least it didn't the last time. One can only hope.

Saturday, September 1, 2007

Shake and Bake

I can't say I wasn't prepared for the side effects of the immunosuppressive drug made from rabbit serum (ATG). I mean, I knew it was serious when the nurse took out the epi-pen. The nurse monitored my vitals the entire 6 hours I was having the infusion. The first three-and-a-half hours passed uneventfully. We were able to joke about pesky wabbits, and told the old story with the punch-line/moral "hare today, goon tomorrow." Then it hit me. My temperature began to steadily rise and I got the chills. I was pretty much flattened for the next 14 hours, feverish and shaking. My nurse Vytus said they call it shake and bake. Cute.

Marty spent the night, but truthfully, I was not aware of most of what happened. I woke up around 8 am with a terrible hangover. By noon I was feeling better, but I slept a lot today.

I feel pretty good at the moment. My blood pressure's really low so they're bumping up my iv fluids which means more trips to the bathroom.

At least the epi-pen wasn't needed.

Friday, August 31, 2007

"That rabbit's dynamite!"

Your substitute plogger for today is Marty.

Those of you who've seen the now-classic "Monty Python and the Holy Grail" will surely remember the scene where the Knights encounter a rabbit, guarding a cave. It was no ordinary rabbit. Well, his stronger, meaner brother was used to make the serum that was infused into Patricia over the course of this afternoon and evening.

For the first 3 hours, Patricia and I kept up a fairly steady banter combining humor and q&a about the transplant with the nurse assigned to her. Apparently a nurse is assigned to be with the patient constantly during the entire infusion of this immunosuppressant, ATG, a serum made from bunnies. At the 4th hour, the bunny knocked Patty down for the count. The next 4 hours saw high fever, headache, chills, the rigors (pronounced RY-gors), or uncontrollable shivering, and delirium. The nurse reassured us that this was "normal." As normal as it can be when you are chemically bombarding your body to destroy your bone marrow so you can replace it with some "goo" that's been squeezed out of a leftover umbilical cord or two.

Most of the management of the infusion is done with drugs, but to help bring the high fever down, the nurse placed some ice bags in Patty's armpits. Not the most comfortable, but she was so wiped out, she barely noticed. Also, considering all the electronic machinery attached to Patty right now, the ice bags seem like a home remedy. "Simple, but effective" was the answer the nurse gave me.

One moment of pure hilarity came this afternoon as they prepared Patty for this infusion. The nurses had double-teamed her to get 5 leads on her chest for the heart monitors, 2 pumps for the infusions into her heart, a cuff on her arm for the automatic blood pressure monitor, and even a clip on her earlobe to check her blood oxygen levels. At this moment, as we're watching the 2 nurses trying to keep the 8 electrical wires and 2 infusion tubes from becoming entangled with Patty's arms and legs, a young physical therapist backs into the room, dragging an exercise bicycle, and announces with a big grin on her face, "Okay, here's your bike!" About 5 seconds of dead silence, and then we all break into hysterical laughter. All except the poor young woman, who just stands there asking "Didn't you want an exercise bike?"

It is now about 10:30 pm. Patty has thrown up, had a round of the "shakes," her temp has peaked and is finally starting to come down, the ATG is done until Sunday, and Patty appears to have fallen into a deep, almost peaceful slumber. I look over at the exercise bicycle. Maybe tomorrow.