No Spring Fever

I took this photo last week when I thought maybe Spring would arrive any minute. This is all the Spring we've had here in Rhode Island, small maddening signs that promise more than they deliver. At least the snow plow guy came and took his markers away. That's a good sign, right? Today should be another gray 40ish ho-hum day.

It seems some of you were worried about my cold morphing into an exotic opportunistic disease. And why not? That's what I've become accustomed to. I'm pleased to report that the cold is losing the battle. Marty took my temp all weekend, not with a thermometer but the old-school lips-to-forehead technique he swears by. I remain as cool as a cucumber.

Now, if we could just spring Spring ...

Lemon Tea

My usual daily routine calls for a cup of fairly strong tea with milk at 4 pm. I used to drink coffee at this time of day, but decided years ago that while coffee tastes divine first thing in the morning, after that it's just a dark hot beverage.

But today my afternoon tea is lemon-ginger. That's because I have a cold, something I haven't experienced in years. My former immune system handily deflected cold viruses and other common ailments but somehow allowed leukemia to slip through the cracks.

In a way, it's a pleasure to have an average ordinary health issue. This will be a test of sorts for my new system, but I'm confident it can handle a case of the sniffles. I'll drink herbal tea and milk the situation for all its worth. Cooking dinner is out. Reading a book is in.

Handknit Sweater, Unedited Version

It's taken a while, but here's a shot of me modeling the sweater I knitted during the winter of my discontent. I wore it on an outing yesterday, and a friend suddenly blurted out did you KNIT that YOURSELF? Yes, but it took blood, sweat, tears, my patient mentor, the internet and some unorthodox techniques to finally produce something resembling a sweater. What you can't see in the photo is that the thing's way too wide and one sleeve is longer than the other and I mis-knitted about 50 stitches. At one point, I almost threw the various parts into the fire. Writing can be like this for me, too. I begin with what I think's a great idea. I start stringing together words and thoughts. When I go back to it, I see it's not working, so I rip out some sentences, cut and paste a few phrases and forge on. Finally, if I haven't given up, I weave together the pieces and see what it looks like. If I think it hangs together, I might share it. I might send it to a magazine, where the sleeves will be shortened and the buttons changed. That's what I missed while knitting this sweater, a good editor. I don't think there is such a thing as a sweater editor, but there should be.

Two Years Ago

On March 24, 2006 the wheels came off. I'd gone to my doctor to see why my finger was swollen. I hadn't injured it, hadn't been bitten by an insect. After a week of watching and waiting, I'd turned the mystery of this mundane symptom over to him to solve.

My regular doctor hadn't been there, so I saw the nurse practitioner. She examined my finger, asked a lot of questions, and said she wanted to do some blood work. She mentioned rheumatoid arthritis as a possiblity, a shot in the dark really.

The next day, my finger seemed a little better. Doesn't that always happen after you've finally given in and sought medical advice? It was a typical Friday, a day I usually don't work. I went for a morning run, thinking about what I'd wear to one of our favorite restaurants that night. My husband and I were meeting friends in Providence. I stopped by the neighborhood mah jong group and played a few rounds. Then my daughter called to say she'd meet me at the store where she'd picked out a prom dress. For an hour or so, I sat and watched tense interactions play out between teenager daughters and their mothers. I'd already decided that whatever Mariel had chosen, I was going to say it was beautiful, even if I thought another dress would be more so. Later, I would be very happy that we had not tussled over something so minor as a prom dress.

We returned home. I got the mail and checked in with the boys. It was a typical late-March day: cold, gray, cruel. My backyard had no color. The phone rang. It was my doctor, apologizing for calling. He'd prefer to see me in person but he'd just received my lab results and had already left the office. I began to tense a little but didn't have time to rachet up my anxiety to the level necessary to hear what he said next. Acute leukemia, no doubt, something, something, white cells, something, something blasts, I'm sorry. I sat down and stared out the window at the lifeless landscape. I thanked the poor man and hung up. My husband walked in, and although I wanted to save him from the terrible news, I couldn't: I have acute leukemia. An oncologist would be calling soon.

Creakiness & Crocuses

My joints ache. I'm walking like a very old person. This is not fun. I was up last night for hours trying to get comfortable. Finally, I gave up on sleep and wandered around the house for a while, eating pretzels and trying to work out the kinks. In me, not the pretzels. When I woke up this morning, I was creaky and cranky. Poor me.

To take my mind off my sudden descent into geriatric hell, I went outside for fresh air. I noticed the crocuses were struggling to get some air of their own, covered by piles of leaves I wasn't allowed to rake last fall. I got a rake and a mask and went to work. This made me happy, even though I felt a touch of anxiety about the fungal spores I may have exposed myself to. I'm tired of being fragile.

Most 100-year olds wouldn't do what I did next, which was go for a jog. I thought it would loosen up my joints and make me feel more sprightly. It worked, but mostly on a mental level.

I am the Tin Man.

Blood Diplomacy

Yesterday I did some research about t-cells and how they function during transplant. T-cells are a type of white blood cell. From what I think I understood, cord blood contains t-cells that are "naive," meaning they take a while to get up to speed. T-cells live in the body for a long time and are an important component of the immune system. One possible reason I've managed to stay so healthy through all this is that my leftover t-cells continued to do their job, even after they got their walking papers. The main concern is that these residual cells might attack the new cells that grafted into my bone marrow and have been churning out all the important components of my new blood. This has not happened, as I remain nearly 100% engrafted. If my t-cells were up to no good, they'd be trying to eliminate the interlopers. All parties involved must have worked out a non-aggression pack, to my benefit.

In theory, as I decrease and finally cease my immune-suppressant medication (about 3 weeks from now), the donor cells (the grafts) should get bolder. I'm not sure what will happen then. I may get graft vs. host symptoms. My t-cells might come under assault by the newly unrestricted white cells, which will hopefully mature and graduate to full t-cell status. It's strange to think I'll be sitting around doing nothing, possibly sleeping, and a battle royale might be raging in my immune system. All I ask is that they all join forces and annihilate any lurking leukemia cells. Once that's accomplished, I'm all for peace, love and understanding.

Fear Itself

There's a dark little corner of the mind where you cram all the stuff you don't want to think about. You know, thoughts about losing a loved one in a car wreck--especially a child, fears of financial ruin, health worries real and imagined. Living with a disease like leukemia unfortunately provides ample opportunities to process information that's frightening. The little corner becomes a little bigger and a little more toxic, and every time you try to slam the door shut, there's stuff sticking out that you shove in only to have other stuff spill out in another spot. In the past two weeks, I started to let myself think that maybe I've beaten this nasty disease. The door was firmly closed; nothing was oozing out around the edges. It felt good. No, it felt exhilarating. I wasn't even worried about my recent bone marrow biopsy, I felt so confident. Last week, I posted the partial results indicating my blood was genetically all male, with no evidence of leukemia. The panic room in my brain shrank to the size of a pea.

Yesterday, I found out that the chimerism tests painted a slightly different picture. These tests are a bit more sensitive than a biopsy. These tests show I still have two donor cords, but there's also some of me. My blood chimerism showed 2% me; my marrow, 1%. That's nothing, really, and still no sign of leukemic cells. But the chimerism analysis of my t-cells, which are part of my immune system, indicate that 62% are mine, 38% my donors'. My doctor says the results are excellent, and from the zero leukemia point of view, they certainly are. Even so, my terror alert level immediately went to red, and even though I'm using all my mental strength trying to cram panic back into its special corner, it's leaking out everywhere.

What am I so afraid of? Relapse. The way a transplant's supposed to work is that you receive not just new healthy blood, but a new immune system. The new system is what keeps any residual leukemia in line, destroying the clones before they overwhelm the healthy blood. My latest tests show I have a hybrid immune system, that there's been a truce called between my system and the donors'. There's evidence that a situation like this increases the chance of relapse. I can't keep the thought of relapse contained to a small area in my brain, although I know I have to try. For one thing, fearing relapse won't prevent it. If I eventually do relapse, then I'm wasting this precious healthy time living in the dark ages. And relapse may not be in my future at all. This is just another challenge I'm going to have to face and manage.

I've already had some help. This morning I wrote emails to two women who've also undergone transplants for leukemia. I've never "met" them face to face but I feel I know them and they know me. When it comes to this stuff, they're experts. Both wrote back to me, offering sympathy, understanding and support. They know what it's like to battle not just leukemia, but the unending worry about the future. Their kind responses helped mop up some of the mess. Fear hasn't been vanquished, but it's taking up a slightly smaller piece of my brain right now. Thanks guys.

Death and Taxes

For now I've eluded Death; taxes is another story. The last scrap of financial data I needed to complete our 2007 taxes arrived yesterday. I had already added up all the medical expenses for the year that was, a tidy sum. I gathered up the forms this morning and carted them off to my accountant, only to find I was missing some obscure 1099 from an UGMA I'd rolled into a CollegeBound fund. One form. That's not too bad considering my brain is still recovering from considerable chemo strafing. Augmenting the financial migraine is the notice Swarthmore sent informing us that tuition is rising 4 point something percent next year. I wonder if we get a discount if we pay in gold. Or oil. Speaking of oil, our most recent home heating bill was higher than our monthly mortgage payment. My stimulus check is going straight into the furnace.

I think Ben Franklin's remark ennumerating the only certain things in life needs to be modified:

In this world, nothing is certain but death, taxes, tuition increases and freezing our butts off.

All Boy

The results are in. My bone marrow shows 100% XY cells which means they are not mine. I should soon know whether I still have mixed chimerism (meaning cells from both donors) or whether one of them has muscled out the other. This is excellent news by the way, because my blood and bone marrow (XX), with its potentially leukemic properties, has been effectively banished.

Maybe this explains why I can suddenly do push-ups. In the past, I was only able to do one or two "real" push-ups, the manly kind where you don't bend your knees. My daily calisthenic routine has always included 20 bent-knee push-ups. Having read an article recently about push-ups being a measure of overall body strength, which unfortunately decreases as we age, I decided to see how many straight-leg push-ups I could do. Last night, I did 6. This almost killed me. My goal is to work up to 10. This boy blood's the best.

One Down, Two to Go

Happy 20th Birthday Mariel! Today I'm the parent of just two teenagers since you are now in your 20's. Of course, this milestone reminds me that tempus fugit and I grow old. Shall I wear the bottom of my trousers rolled? Sorry, couldn't resist.

Twenty years ago, I noted the first crocus blooming in the garden as I left for the hospital to birth you. Twenty years later, you are in Ecuador immersing yourself in the language, culture and social issues of its people. Feliz cumpleanos a ti mi hija.

It has been worth it, after all.

A Plug for Knowledge

Recently, Marty's been bemoaning the fact that the people he works with don't place much value in knowledge for the sake of knowledge. As a matter of fact, they ridicule him, saying he knows too much. They keep telling him to purge. We thought maybe this was a function of the nature of his business, manufacturing. You have to know certain things to make and sell stuff; beyond that, what's the point? But a friend from New York writes that he's sometimes belittled for the breadth of his knowledge, and he works for a publishing company. They call what he knows "trivia," because they see it as worthless.

Give me a minute to climb on my soapbox. I'm a little rickety these days.

Okay. It seems that it's no longer cool to know that a quotation comes from a play written by a guy named Shakespeare, or that 1066 was the year William the Conqueror had his way with England. I guess if all you know are the quotes and dates, that you've never actually read the play in question or understand the impact of the Normandy invasion, then what you know are facts, and I can see an argument for them being trivial. Rhode Island was recently shocked by the news that 80% of its 11th graders aren't proficient in math. Oh, the obligatory hands were wrung, but not too many people seemed overly concerned with this. In fact, there's an essay on the editorial page of today's Providence Journal that refers to the woeful test scores, written by a member of the governor's task force on urban education. Incredibly, he argues against learning algebra and geometry, noting that he hasn't had need of these disciplines in the last 50 years, and that a "prominent RI businessman" learned all the math he needed to know in elementary school. Did these gentlemen (apparently not scholars) ever try to figure out the area of a round baking pan to see if it could be substituted for the square pan called for in a recipe? I'm pretty sure you need to use geometry.

Can't we just learn something because it's interesting or fun, something we can perhaps discuss with fellow human beings when we're hanging around? Does everything we learn or know have to add to our bank account or improve the gross national product? Maybe this explains why there are so many dullards walking around scraping their knuckles on the ground. Why bother to read a book or an article when it will just add to that useless heap of knowledge? Did you ever try to read something one of these non-readers writes? Its you're life. Myself will shut up know so you can wach American Idle.

Had enough? Here's a little more you don't need to read, but I hope you'll want to. My son participated in the RI Academic Decathlon yesterday. It's not really his thing, but he was persuaded by his mother and his physics teacher that it would be fun. Mark won two bronze medals, one in math and one in science. He thinks he could have done even better in math if he'd remembered to bring his calculator. He said it was exhausting, but incredibly fun. His school placed fourth overall.

I'm done.

A Half Year Later ...

... and I'm still ticking. Like that relentless rabbit, with whom I've shared more than I care to admit or remember, I just won't quit. Was that really me who had a transplant 6 months ago? Oh yes it was. Since I've forgotten some of the nasty bits from those days of whine and no roses, I decided to revisit earlier blog entries to jog my memory. I read them and wept.

Serves me right. Last week, I poked fun at Marty when he told me he'd read some of those posts recently, and they'd made him misty.

What I learned: I felt like Sigourney Weaver in Alien, and I was bored out of my mind. The fact that I actually recorded the nightmare is testament to the latter. What provoked tears is that my words, although accurate and descriptive and sometimes amusing, don't do justice to the experience. I guess you had to be there.

I'm happy to be here, not there.

Jiffy Biopsy

Today I had my 13th bone marrow biopsy, a baker's dozen. One can only hope it's tossed in for free. Usually, my doctor's assistant does it, but she had a baby recently and is not yet back at work. So the transplant doctor himself performed the necessary but somewhat barbaric procedure, the doctor who's called all the shots regarding my care (recommending an experimental chemo cocktail when I failed first induction, rejecting the 10/10 donor match as not quite perfect, choosing the umbilical cords that came closest to matching each other and me, orchestrating post-transplant drug therapy) but who's never actually touched me except for listening to my ticker once or twice. The man is incredibly cerebral, focused and wastes no words, no time, no emotion.

Have you ever done one of these? I quipped as I lay face-down on the procedure table. I admit, I was a little worried that his technique was possibly rusty. You have to trust the person who's piercing your hip bone with a 6-inch needle. I didn't have much time to worry though; it was the quickest biopsy I've ever had. Numb the area with novacaine, insert needle, 3 quick plunges (ouch!) and it was done. Did you get the bone chip? Yes, a nice one. It was over so fast, the pain was so short-lived, I wasn't sure I'd actually had the procedure. But I had. A 20-minute bone marrow biopsy in 5 minutes. Nothing wasted. No words, no time, no tears.

The 3-Minute Democrat

Rhode Island is holding primary elections today, March 4th (aka Command Day in some circles). More than half of RI voters are registered as Independents (including this blogger), meaning they can vote in either party's primary. So this afternoon, I marched forth and became a Democrat for 3 minutes. I went to my polling place, an elementary school, at 3:30, thinking I'd avoid direct contact with all the little germ incubators. No such luck. An afterschool program was in full swing when I arrived. Fortunately, I was wearing a heavy-duty surgical mask, as well as latex gloves. Voting takes place in the gym, which had maybe 15-20 people in it when I arrived. After becoming a Democrat and voting, I filled out a form to disaffiliate from the party and become an Independent again. Neither hell, high water nor a stem cell transplant can prevent me from doing my civic duty. Now let's hope I didn't get infected.

Unrelated political news: I spoke with Mariel last night who just returned from a trip to the Amazon. I knew she'd been in a border region, but had no idea if the park she visited was anywhere near the scene of the weekend FARC murders, which occured in Ecuadorian territory, close to the Colombian border. Since Venezuelan President Loco Chavez claimed he was sending troops to the area, as was Ecuador, I asked myself: why did we think studying in Ecuador was a good idea? Mariel had not been anywhere near the site of the massacre. According to Mariel's Ecuador Mom, whom I chatted with briefly, everyone's hoping for a peaceful resolution to the problema. Next weekend, Mariel's taking a trip to Banos, a town situated near an active volcano that just last month had been erupting violently. Fortunately, I have a bit of active volcano experience under my belt and therefore am not an alarmist. Volcanoes are fairly predictable, whereas political eruptions are much more difficult to gauge.