leukemiasurvivor.com

leukemiasurvivor.com http://www.leukemiasurvivor.com/ On leukemia, chemotherapy, and moving on with the rest of your life. en Copyright 2007 Tue, 30 Nov 2004 16:01:30 -0600 http://www.sixapart.com/movabletype/ http://blogs.law.harvard.edu/tech/rss Back Burner months since I've written anything here. Out of sight, out of mind, I suppose. This is a brief note. Funny, in hindsight, given some of the other more recent entries about cleaning up and updating and whatnot. I've finally implemented a more permanent solution to the comment spam that's been the scourge of a neglected site, so I trust that things will remain fairly stable here for awhile. But the reality is that telling the remainder of this story needs to be a full-time commitment, and that kind of time is a scarce commodity for the forseeable future. My target date for completion has simply been pushed much farther into the future. At some point during the next several years, I hope to be able to carve out a significant chunk of time to be able to dedicate to the retelling (reliving?) of my leukemia experience. I'm a sucker for milestones: in March of 2010, I will not only be 40 years old, but I'll also have been in remission for 20 years. Half my life. So that's the target. About five and a half years away.]]> http://www.leukemiasurvivor.com/miscellany/back_burner.html http://www.leukemiasurvivor.com/miscellany/back_burner.html Miscellany Tue, 30 Nov 2004 16:01:30 -0600 Back To The Beginning advancing the story, I am in the midst of improving it. Filling in details, adding a little across-the-board spit and shine. For example, here is a paragraph from my first entry that I'd never edited beyond cursory first draft changes:

Then I will be talking with Mom. We are standing in the kitchen at the new house. She is writing a grocery list. I'm swishing a glass of ice water around, listening to the ice clank against the sides, asking her about insurance. We talk about this fairly often. It concerns me, my ability to find insurance with such an ominous "pre-existing condition." I'm not even paying much attention to what I'm saying, just random questions for her to field. Suddenly she'll start crying. Real tears, running fast, and they make me uncomfortable.

I've been making wholesale changes throughout, starting from these very early words. This section now reads as follows:

Maybe it's 1992; I would be talking with Mom. We'd stand in the open kitchen at the new house, the cleaner, newer, more spacious house that she and Paul had moved into after Laura and I had gone away to our respective colleges. Mom is working on a grocery list, standing in front of the refrigerator with a small notepad, opening and closing cupboards almost at random. I'd be leaning up against the corner by the double sinks, swishing a glass of water around, listening to the ice clank against the sides, asking her what she thinks about insurance. We've talked about this fairly often since graduation: it concerns me, my inability to find insurance with such an ominous pre-existing condition. COBRA won't last forever. What am I supposed to do when I finally get a real job? I'm not even paying much attention to what I'm saying, just random questions for her to field. She's The Mom, the solid, strong business woman. She knows these things. But suddenly she'd start crying. Real tears, running fast, and they would make me uncomfortable.

I've got a ton of pages marked up. Slowly working my way through them all, currently getting ready to make changes to the scene where I'm third-person again, stupidly staring at a bloody toilet bowl. There's much more to come. Much more new prose to follow, even though it won't be in the form of any brand new entries. I'll keep trying to get these templates to work the way I'd like, to better highlight new writing in old entries. Until then, the table of contents on the left, or the more printer-friendly version of the story remain the best ways to keep up-to-date.]]> http://www.leukemiasurvivor.com/on_writing/back_to_the_beginning.html http://www.leukemiasurvivor.com/on_writing/back_to_the_beginning.html On Writing Thu, 27 May 2004 10:56:20 -0600 Update everything I've written thus far. This has involved a lot of pen and paper, scratching out words, trying to cram new ideas into the margins, circling headers and whatnot. A lot of behind-the-scenes improvements, I hope. At the same time, I will need to make some template modifications (again). After I finish with the manual revisions, I will want to implement the changes. I'd like for those changes to be reflected as "recent updates" without necessarily changing their intended chronological order. I'll try to figure that part out later. But for now, I'm keeping busy with editing. For any regular (or even semi-regular) readers out there, fear not. I am committed to finishing this story.]]> http://www.leukemiasurvivor.com/miscellany/update.html http://www.leukemiasurvivor.com/miscellany/update.html Miscellany Wed, 05 May 2004 13:00:29 -0600 Baby Steps No, no. This is his home. He will do this thing. He has been so dependent on so many people for so long already. These eight steps. Ten steps. A hundred? He will do these on his own.]]> http://www.leukemiasurvivor.com/4_happy_birthday_to_me/baby_steps.html http://www.leukemiasurvivor.com/4_happy_birthday_to_me/baby_steps.html 4. Happy Birthday To Me Thu, 15 Apr 2004 16:20:38 -0600 Finally bleed anymore, and I'd be able to fend off any new infections with my new healthy polys, and all the other white and red blood cells, and... and... and everything. Didn't they understand that I had a birthday coming up? I mean not just any birthday, but the big two-one, legally an adult now? Doesn't that take precedence over any stupid low stupid potassium stupid counts? He didn't budge. "It's all or nothing," he'd said, "you don't leave until all of your counts are back." Now, outside, he's talking just above a whisper, the quick huddle outside my room before the team comes in to let me know where everything stands. He tells them that I was angry about this as he's ever seen me, so close to the finish line, only to have it move back another hundred yards. Just be prepared he says. So they bring me these potassium pills. Huge fucking pills that are easily the size of a grape. I'm supposed to take them two or three times a day. The team nods wisely. These will help, they say. I'm so very glad that I've been able to work on my pill-taking technique over the past month or so, because without all that practice, there's absolutely no way I'd be able to force one of these monsters down my throat. But force them down I do, with a cold shotgun glass of apple juice. Within a matter of days -- running right up against the deadline Dr. Doug had drawn in the sand -- my potassium counts shoot ahead. I'm golden. It's April 23rd, 1990, exactly one week before my twenty-first birthday, and I'm finally going home.]]> http://www.leukemiasurvivor.com/3_induction/finally.html http://www.leukemiasurvivor.com/3_induction/finally.html 3. Induction Tue, 13 Apr 2004 12:05:28 -0600 Except For One Uh-oh. Dr. Doug continues. "Your counts have made a wonderful, remarkable comeback, Robert. We're very excited for you. All your numbers are good. Umm... I mean... except for one." Dammit. "Which one?" I ask. The clipboard is freed from the confines of his arms. He holds one end of it close to his stomach, tilting the top outward, as if he's holding playing cards and doesn't want me to see his hand. "Potassium," he says. "Potassium." "Yes. It's coming up, just not as quickly as the others. It's still very low." "Potassium," I say again. He nods. I never even knew we were tracking my potassium counts, and even if we were, they wouldn't matter nearly as much as all of my others. I'm not going to bleed to death with low potassium. I'm not more succeptible to infection. It feels like they're picking nits, now, trying to come up with reasons to keep me in the hospital longer than necessary. "So who cares about potassium, anyway?" I ask. "We do." Dr. Doug has folded his arms over the clipboard again. His feet are solid. There's eye contact this time. Good, solid, eye contact. He's not smiling. "You're not seriously gonna keep me here just because of that, are you?" "I'm really, really sorry..."]]> http://www.leukemiasurvivor.com/3_induction/except_for_one.html http://www.leukemiasurvivor.com/3_induction/except_for_one.html 3. Induction Mon, 12 Apr 2004 13:12:04 -0600 Does A Body Good All the Coke I can drink? some might say when they see the fountain pop dispenser in the dorm cafeteria, proceeding to stack twenty short glasses onto a tray, filling them up. Me? Who knows why, but I actually preferred the ice-cold glass of milk. At home, especially over the summer, I'd sometimes even put a glass into the freezer before dinner started so by the time the meal was on the table, I'd be able to enjoy a truly frosty cold beverage. All this means that I had strong fucking bones. My bone marrow might have managed to get all messed up, but the bones themselves? Solid. Another thing about milk is that it's the only beverage I'm ever able to drink when I'm eating Hot Dish. Please don't ask me to explain these things. It's the same Pavlovian response I have to watching a movie in a theater; even if I'm completely stuffed, I absolutely cannot watch the movie unless I've got a bucket of popcorn and an equally large (and overpriced) gallon or two of Coke. Dr. Pepper. Whatever. Milk and Hot Dish go equally hand-in-hand. It is the way the world works. So when Dad and Jane come into the room first, smiling, holding what appears to be still-warm baking dish of grilled onions and fresh ground beef and creamed corn and noodles and tomato soup, and it's that familiar, comforting smell that I haven't smelled in probably close to a year, at least well before I'd left for Lancaster, I know that I'm going to want to wash down my first few bites with only one particular beverage. "Shelby is parking the car," Dad says. "She'll be up in a minute or two." He starts to unpack a grocery bag. Napkins and bowls and some plastic forks and spoons. One of those little travel-sized salt-and-pepper shakers we'd bring on camping trips. "Do you want something to drink?" Jane asks. "Some milk would be great. I think they have some in the fridge down the hall." "Are you sure?" she asks. She knows. She knows that maybe it's not such a good idea. "Yes," I say. Definitely. There aren't any options in my mind. I'll drink it slowly. I'll give my stomach a chance to welcome these old tastes. "I'll get it," Dad says. Jane lifts the foil from the glass baking dish. Steam escapes. She folds the foil in half a few times, placing it back inside the grocery bag. She brings out a large spoon. She stirs the Hot Dish. More steam. Dad returns with a couple of cartons of milk. The little cartons, half pints, that we used to get from the school cafeteria. The kind that has that little extra funky taste, especially when they've only just been recently put into the refrigerator. I thought the nausea had passed. I thought it was so totally and completely rear-view mirror by now. But there's something. I'm not sure what's happening, but I recognize some of these sensations, and they're most definitely not the kinds of sensations I want to be emanating from my stomach when I'm about to partake in a victory dinner. How many bites do I get in? Three? Six? At least a few for the taste, I'm sure, before I grab a carton of milk. I somehow think that drinking milk will help with the naseau, even with all evidence to the contrary. Plus I'm a little embarrassed. I'm supposed to be better. An old family friend is here with us, and we're celebrating. It's no use. I excuse myself as I rush over to my bathroom, letting the door shut behind me. It doesn't take long. When I come back out, Jane is already packing up the dinner. She knows how smells have affected me. Everybody's apologizing at once, then forgiving, saying "no, no, it's okay," then laughing, then trying to figure out what to eat for dinner instead. I end up going with saltine crackers. Mmm. The crispy taste of victory.]]> http://www.leukemiasurvivor.com/3_induction/does_a_body_good.html http://www.leukemiasurvivor.com/3_induction/does_a_body_good.html 3. Induction Thu, 08 Apr 2004 16:43:07 -0600 Hot Dish not have been amazed by it's elegant mix of ground beef and egg noodles, a fresh onion and a can of creamed corn. And the tomato soup. Can't forget the can of tomato soup. That's, what, like two vegetables, a fruit, some grain (sort of), and meat. It's like a complete well-balanced meal that you can pretty much cook anywhere. How perfect is that? The only food group we're missing is dairy. More on that later. Had I not grown up in Seattle, I probably would have realized that "Hot Dish" wasn't some clever name that Jane had come up with for a taste sensation that's served, well, hot, but that it was the ubiquitous name for an infinite number of variations of the noodle/meat/vegetable casseroles that are served at potlucks and church socials and company picnics all across The Land of 10,000 Lakes. But I didn't know. To me, this was a special recipe, a super secret family recipe, so simple and quick and easy. Here it is, from the kitchen of Jane O'Dell. I actually had to call home my freshman year at Carleton because I'd forgotten one of the ingredients. Twice.

1 lb ground beef 1 med yellow onion, chopped (Walla Walla sweets are my personal favorite) 1 can tomato soup 1 can cream corn 1 16 oz pkg egg noodles
Boil the noodles as per the package instructions.

Brown the beef.

Either grill the onion in the fat from the beef, pushing the nearly-browned meat into a wide circle around the outside of the pan, or -- my preferred method -- grill it in a separate pan with a little butter.

In a large baking (or casserole) dish, mix all of the ingredients together, including the cooked noodles.

Cover the dish with foil, and bake at 350 degrees for about 30 minutes. Salt to taste

This was the meal that I'd asked Dad and Jane to bring to me near the end of the month, when my body was finally telling me that we were ready to consume some favorite solid foods.

]]> http://www.leukemiasurvivor.com/3_induction/hot_dish.html http://www.leukemiasurvivor.com/3_induction/hot_dish.html 3. Induction Wed, 07 Apr 2004 14:50:09 -0600 Gimme Some Grub hungry again, that I'm thinking about getting some food into my system. It starts off with baby steps. I've been down this road before, tricked by drugs into believing that I'm ready to eat solid foods only to dash off to my bathroom. So I stick to the basics, steer towards the bland. The hospital continues to bring me three mostly square meals a day; I'll pick at the lightly toasted white bread, the saltine crackers, maybe nibbling at tiny cut up carrots or rubbery celery. I'm trying to get more exercise during these days of rapid improvement, taking walks on my own through the deeper reaches of the hospital. Wheeling my "little buddy" into the middle of my cold floor, struggling to eke out a handful of sit-ups, or a single wobbly-armed push-up. I'll visit the cafeteria once a day or so, rooting through the vending machines. Potato chips, Kit Kats, even the occassional can of Coke. It's all good. I can actually taste it, and everything stays down. But now I'm ready for some real food. Dad and Jane are back in town again, staying with Shelby. They want to bring a celebratory dinner -- remission for sure, plus blood counts, plus I've stopped losing weight, plus the light at the end of the tunnel, all of that -- and they ask what I'd like to eat. Anything. The sky's the limit. Any restaurant, any recipe, any stacked-with-toppings pizza from the swankiest joints in town. For me, it has to be Hot Dish, easily my favorite family recipe growing up. One of my all-time favorite meals, period.]]> http://www.leukemiasurvivor.com/3_induction/gimme_some_grub.html http://www.leukemiasurvivor.com/3_induction/gimme_some_grub.html 3. Induction Fri, 02 Apr 2004 16:34:43 -0600 Almost Home 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."]]> http://www.leukemiasurvivor.com/3_induction/almost_home.html http://www.leukemiasurvivor.com/3_induction/almost_home.html 3. Induction Mon, 29 Mar 2004 12:08:22 -0600 It's Just A Blip 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."]]> http://www.leukemiasurvivor.com/3_induction/its_just_a_blip.html http://www.leukemiasurvivor.com/3_induction/its_just_a_blip.html 3. Induction Thu, 25 Mar 2004 15:27:40 -0600 They're Back! 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."]]> http://www.leukemiasurvivor.com/3_induction/theyre_back.html http://www.leukemiasurvivor.com/3_induction/theyre_back.html 3. Induction Mon, 22 Mar 2004 14:59:39 -0600 Drifting 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.]]> http://www.leukemiasurvivor.com/3_induction/drifting.html http://www.leukemiasurvivor.com/3_induction/drifting.html 3. Induction Wed, 17 Mar 2004 23:14:21 -0600 PSA You probably don't know this but while (Laura and I donated platelets) Paul donated whole blood to the blood bank in your name to replenish what you used of their supply. He did not match you so couldn't give directly to you but gave to the blood bank as many times a month as they allowed for the entire time you were in the hospital I think it was a couple of times a month. Also I got people I worked with to donate whole blood to the blood bank. In fact I got the Blood Bank to come out to Boeing as a special trip to get blood from people in your name. A couple of my work mates signed up for donating platelets and also for being a bone marrow donor. When I retired in 1996 at my retirement party one of these ladies told me she was still donating platelets and is still in the bone marrow registry. All of this because of you. It's a wonderful world isn't it. There really are a lot of nice people in this world.Indeed. Here's more on how to help potentially donate bone marrow (by first registering with the National Marrow Donor Program, which requires little more than a blood sample and some paperwork). Also, if you're able to donate blood, or even platelets, I can guarantee you that there's a leukemia patient who would welcome both.]]> http://www.leukemiasurvivor.com/miscellany/psa.html http://www.leukemiasurvivor.com/miscellany/psa.html Miscellany Mon, 15 Mar 2004 11:42:54 -0600 Easter Weekend 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." http://www.leukemiasurvivor.com/3_induction/easter_weekend.html http://www.leukemiasurvivor.com/3_induction/easter_weekend.html 3. Induction Sun, 14 Mar 2004 01:03:21 -0600