March 2004 Archives

More counts return in the days that follow. Platelets are back. Polys creep higher. Hematocrit is up. Everything is up. It couldn't be anything other than sudden, but it's still surprising, and it lightens everybody's mood.

In a matter of days, we've moved from dark, ominous discussions about searching for an emergency bone marrow donation -- maybe even accepting a partial 4/6 match because it was looking more and more likely that my marrow would never recover on it's own -- to laying out the requirements for my departure. I'll still need to come back later in the spring and summer for more treatment, two more rounds of consolidation chemotherapy, but I'll be allowed some home time between those two rounds.

"Your counts will need to be at certain levels," Cindy tells me. "Your doctors should be telling you more about it, but there's some minimum thresholds they'll want before you can go home. Not just the main ones, either. There'll be a lot of different numbers they'll be looking at."

"How long?" I ask.

"Before you're back home?"

"Yeah. How long do you think it'll take before I can get out of here?"

"It depends," she says. "Depends on how quickly all of your counts recover. I wouldn't want to say. It'll be up to the docs."

"Can you guess?"

I'm itching. I am so ready to get out of this hospital, back to my house, my bed, a neighborhood that I'm familiar with, a couple of different loops, a mile or two, that I can run or bike. Being able to get up and out of bed, to actually get dressed again, to go out to restaurants, movies, whatever. Not to mention that it's less than two weeks, now, until I'm twenty-one. I can't wait.

Cindy smiles.

"You're doing awesome, Robert. You really are. You'll be home soon enough."

"Next week?"

Now she laughs.

"Just be patient. It won't be long, now."

It's just a blip. The tiniest of tiny blips on the chart, but there is a number, now, where for weeks there had been none. I'm all a million questions suddenly, wide awake, reaching for the controls at the side of my bed, fumbling for the little button that's like a triangle pointing up. I'd like to say that I'm sitting up in bed, like a bolt, but I'm still too tired for that. The bed adjusts. It's motorized, adjustable, and it helps me get kind of vertical without having to expend any energy.

"Are you sure?" I ask.

"Positive," Cindy says. "Absolutely positive."

"How many?"

"Twelve."

"That's it? That doesn't sound like much."

Cindy laughs. "It's better than zero."

"Are you sure?"

"Very sure."

"Could it be a mistake?"

"Doubt it. We'll do some extra draws today. We'll make sure."

It's so completely unexpected, this rough early morning wake up call, these new counts coming back so late in the game. It's the best news we've had in a very long time. It's the single best piece of news we've probably received since I've been in the hospital. But that still doesn't prevent me from asking the obvious question. Maybe I just want to hear Cindy say it out loud.

"This is good, right?"

"Yes, Robert," she says, smiling, laughing. "This is very, very good."

Rough hands are shaking me awake. Gentle hands, roughly. One of Cindy's slight but strong hands grabs my left wrist, the other pushes repeatedly against my left shoulder. I don't know how long she's been here.

Wake up! Wake up wake up wake up wake up wake up!

She's obviously back from the weekend, and I'm happy to see her, but I'm sleepy, too. There is no bright morning light trying to push through my curtains. The sun isn't even up yet; Cindy starts work early. Too early.

"Wake up, Robert," she says. "They're back!"

I'm groggy, not quite ready to process what she's saying.

"I know you're back, Cindy. But I'm really tired."

"Not me," she laughs. "Your polys. Your polys are back."

Saturday and Sunday pass without incident. These things are the same. There is a sameness in my days, a kind of perpetual deja vu, this magnetic pull from my bed that makes my limbs so heavy, my body not strong enough to want to bother with resistance. Let the heavy lids close. Let the sleep surround.

Drugs arrive in the morning: benadryl to go along with the fresh blood hanging next to my bed. Are Mom and Paul here today or Dad and Jane? Who is with me today?

I am sleepy. Sleepy sleep tempts me.

White coats are in and out of my room. They blur. The blurring blurs mumble to my parents, their voices in and out, too, a "Robert" here and a "patience" there, sentences sifting into my dreams, then jarring me awake, then coaxing me back down again.

It's the same thing as yesterday. It's the same as last month.

I can feel the chills before they even start, like driving the line of a thunder storm. A nurse that is not Cindy puts her fingers on my wrists, takes my temperature with great care, brings one steaming blanket, two, and even though she's doing everything right, nothing happens until the Demoral pushes. It's the same: knees, chest, chills, all followed by the rush of the push, the melting draining whoosh, and then I'm sleeping again until someone wakes me.

I drift sideways through the weekend, waiting for Cindy to return.

Cindy will be gone for the weekend. It's Easter, and she and her husband, Chris, have made some plans to spend some time with their families in Cashmere, this tiny town up along some narrow Cascade Mountain highway or another, not known for much of anything other than being the home of Aplets & Cotlets. She knows how much more worse my fevers get when I don't see her at all during the day, although we can never explain exactly WHY it happens. It just does.

I'm surprised to see her on Saturday morning, but she said that she wanted to stop by, quickly, on her way out of town, to bring me a little something.

"It's not much," she says, handing over a bright yellow envelope. There are a couple of Snoopy and Woodstock stickers on the outside.

"Thanks. You didn't have to do this."

My two bulletin boards are completely filled with cards and notes and letters. I've shifted my Far Side calendar to the bottom, so that it's hanging over the edge, to make room for more cards. The cards have come from all over -- friends at Lancaster, immediately after I'd left, and, now that I've been in the hospital for almost two months, follow-up cards to make sure everything is going well; friends from Carleton, sometimes sending a card a week; neighbors; former teachers; former high school (and grade school) classmates; my parent's co-workers; daily cards from my Aunt.

I don't need (or expect) a get well card from Cindy. She's with me almost every day. She's helped in more ways than I could have ever imagined, and if I would have allowed myself time to think about it, I probably could have figured out that the reason my temps spiked the highest when she wasn't working was because I'd equated all of the good things that had happened since we'd arrived at the hospital -- all of the healing that was taking place -- with Cindy. If she wasn't there, my brain had quietly figured out, then things were not getting better.

"Careful," Cindy says.

I've opened the envelope. I'm taking out the card.

"There's something inside," she says.

Already in the envelope I can see tiny metal dots, shiny punches of confetti. They're falling out of the card. A few fall into my hand before fluttering further downward, pinpoints of color on my white bed sheets. The outside of the card has Snoopy and Woodstock dancing together, hands together, noses pointing skyward, their feet a circular blur. Inside, there are dozens of bits of confetti. More fall out.

"Catch those," Cindy says. "Those are your polys."

She's written the same thing inside the card.

We've been waiting almost a month, now, for my polys to return, and I wish it was simple as confetti inside an Easter card, but it's the thought that counts, and I know Cindy wants them to come back as badly as I do. I'll take them. I'll take absolutely anything at this point, even though these polys won't show up on any of my charts.

"Thanks, Cindy. This means a lot to me."

"You're welcome. Now don't get sick while I'm gone, okay?"

"I won't."

She hugs me quickly. "Okay, then."

Laura walks across the room with barely a hello. Just a "hey" as she sfuffles past my bed. She doesn't bother to knock. Why should she? She's my sister, after all, and she's just finished donating plaletets for me again. She has to take a couple of hours off of work to drive down to the Blood Center, and then to sit there while the platelets spin out of her body, so she usually schedules these appointments for some time in the afternoon. When she's done, she'll drive over to the hospital so the two of us can visit for a couple of hours before any of the parents visit.

She falls into one of the chairs. She grabs at the armrests and kind of lift-wiggles it until the chair is parallel to my bed. She kicks at the other chair with her feet, pushing it, too, no longer faces my bed. She slumps in the one, stretches her feet out in the other.

"fucking-A," she says, a deep sigh, eyes closed, hands running through her hair to take out the loose pony tail.

She's been putting in a ton of hours at work lately. She's beat. She starts venting, my sister, about work and increasingly lousy traffic into and out of the valley, and stupid drivers on 520, and the whole elaborate get-up that she has to deal with every couple of days (especially now that Mom isn't donating platelets any more) and she's so damn tired. The whole thing is so exhausting.

I'm trying to listen to her. This is about her, not the boy in the bed. We all know about his troubles, but what about the sister?

She dropped out of college the summer before. It was a remarkable decision, obvious in hindsight, but the source of a great deal of confusion and concern leading up to it. It simply wasn't a good fit, maybe never had been, the whole college thing. She'd spent the summer trying to figure out how to explain to the parental units that she didn't want to go back to finish up her degree, that she wanted to work, find a job, apply herself to something that she felt was actually WORTH something.

Best decision she's made about her education and her career, this difficult step to leave her undergraduate work unfinished, and everybody (surprisingly) supported her, leading to more success than she'd probably ever imagined possible.

But she doesn't know this now, this dark gray April afternoon, sprawled out across a makeshift bed in my hospital room. She shares her frustrations for five minutes or so. I'm supposed to be the good little brother, listening, acknowledging, agreeing that traffic sucks, and it sure does sound like that Amy is a sneaky back-stabbing bitch. The weather sucks, too. Right on, sister! So tired, lately, too, working long hours and weekends. And donating plaletets must be a royal pain in the ass, too, all that time spent at the Blood Center, and no more junk food for lunch, either, on top of everything else.

Hold it.

Hold everything.

Helping to save your brother's life is a pain? Excuse the fuck out of me?

I'll blame the drugs. I'll blame the drugs and my own fatigue, sick and tired of being stuck in a hospital bed for four, six, eight weeks. I don't remember what I said next. When my parents told me about it a few days later, I didn't believe them. Laura hadn't visited for awhile and I'd asked why.

"Because of what you said to her," they answered.

"What did I say?" I had no clue. (to this day, I still don't remember.)

"You told her that you'd die if she didn't donate platelets."

"What?" I'm shocked. No way I said that.

"There's no way I said that," I tell them.

"She's pretty upset about it. She's doing everything she can for you, you know."

"I know. Of course I know that. Why would I say such a thing? I know she is. Why would anybody say something like that? I'm not going to die."

I'm having a hard time remembering things. Not the obvious stuff: my name, family members, today's date, the name of the current president, all that. It's not amnesia. I'm sleeping so much. I'm sleeping all the time, waking up, sleeping again. Sometimes I can't tell. Conversations are lost, stuff from yesterday, last week. Mornings and afternoons and evenings are repetitive. My days bleed together.

I don't know for sure if Dr. Collins ever explained that we'd need to be doing this thing, but she probably did.

We already know that I've got leukemia. We know that it is a specific type: Acute Mylegenous Leukemia. What we don't know (but that I'm sure we suspect) is the exact sub-type. It makes a difference. Protocols might change, depending on how much more accurately we're able to hone in on the type of leukemia with which we're dealing. There are eight sub-types of AML, all with different symptoms and treatments, different methods of identification.

And so, Dr. Collins patiently explains, we get to the purpose behind this latest test: based on my textbook symptoms, we suspect a particular subtype. There is one way to confirm this with absolute certainty. There will be no doubts after this test, where we will look to my DNA for answers.

I don't have any idea what my doctors needed to extract to get the results of this latest one, or what the process was to get to the desired results. Probably just more blood work. Much more complicated, detailed blood work than anything I've had up to this point. The word "cytogenics" is used several times. I don't pretend to know much about genetics beyond some rough high-school science class memory of Gregor Mendel, and peas, pea pods, combinations that can and can't be based on what your parents have. I don't even know what my DNA would look like. Links in a chain, I suppose. A double helix. It's all very comic-book like when I imagine the labs and the glowing vials and the swirling camera angles, mad scientists in crisp white coats and Thomas Dolby electric hair cuts, cackling over my DNA.

One of the things they're looking for -- one of the things they knew to look for -- they've found. My links are in the wrong order. Two pieces of the genetic chain are not where they're supposed to be. They're unique enough, and have clear enough markers, that it becomes obvious when the right people look for the right things. Two chromosomes, fifteen and seventeen, have switched places.

Now we know: AML M3. The symptoms had supported this, and now, too, my genetic markers.

For me this is just one more in a long line of diagnostics, a nice-to-know, but no different than the countless other test results that confirmed what we'd already suspected.

For my mother, it is something else entirely. This test makes my leukemia appear to be less then random ; it is no longer a lightning-bolt of bad news from the sky, an out-of-control city bus as I'm walking across the intersection. Suddenly there is a feeling of responsibility: where does my DNA come from if not my parents?

I seriously don't remember what's involved with actually removing my catheter. It's designed to be removed, okay, with this clamp underneath my skin that somehow makes sure that there will be no additional bleeding when the long plastic tube is removed.

I won't even need to go under, counting backwards from 100. It's just a simple tug. I'd never pulled on the catheter hard enough (never wanted to), but Dr. Hickman won't need to do much more than put one hand firmly on my chest, near the collar bone, another hand securely gripping the tube that extends out of my body.

One ... two ... three.

Yank!

Done. Goodbye easy access to major arteries.

Big scheme of things? Not much. Not much at all. We're still checking for infections, every few hours. Instead of being able to pop the needle into the free port at the end of my catheter, we're back to slapping the inside of my arms. Good veins, here. Tight rubber around my upper arm, or my elbow. Flex, please, then relax as the needle finds a vein, somewhere, right arm, left arm, it doesn't really matter.

I don't care much about needles anymore.

I'm finding it hard to care about much of anything anymore.

It's good news and it's bad news. Dr. Collins doesn't play the game, asking which one I'd rather have first. She just launches into the good: everything is clean. Sparkling. The single expensive, full-color, uncomfortable bronchoscopy has confirmed what multiple thrifty, black-and-white, simple x-rays were telling us all along. There are no infections in my lungs.

Dr. Collins smiles. She shrugs. She stands at the foot of my bed and does this little half smile, apologetic, because she knows that as good as the news is -- no infections! woo-hoo! -- what it really means is that the Hickman is coming out. We're both reading between the lines. She's standing there, right, all cool and calm and collected, and it really is good news, that the myriad tests I've undergone recently have turned up nothing but nothing.

But we both know where this is going.

Dr. Collins is standing at the foot of my bed and I'm trying to pretend like I don't have a temp. Stupid. Stupid, Robert. I'm shaking. Blankets are piled. She can read my charts. She knows better. I haven't been able to go, what, two consecutive days without spiking a temp? My teeth are chattering while I wait for the demoral to kick in.

If it's not my lungs, then it's my clean, infection-free Hickman. It's really not all that complicated. It's binary. A process of elimination.

It can't be the Hickman, but then again, it can't not be.