|
Notes from the Cell (May 2001 BMT)
5-15. Day -6, BCNU Chemo.
Now christine is lying in bed so I have to sit at the computer...I'm getting tired, but not tired enough to call it a day yet. Ack, restlessness. I think I'll be learning the true meaning of restlessness here.
May 16. Rest Day Well, all the nurses and docs and aids and more that I've met so far have been great. I'm already getting to the point where I try to strike up conversation as much as possible to keep them in the room with me a second longer. I may turn into a real talker after this. The constant flow of papers that state all the known side effects of the drugs I'll be taking has finally slown down. Even the flow of nurses and doctors into the room has slown down for a bit, or maybe it's just finally getting late. I like this time of day, knowing that it's finally okay to call it quits, to lay down in bed and give in to sweet sleep. Now it's 12:30 AM. I can't believe I'm staying up so late. I just took a shower and discovered that my feet are all swollen up. Despite the fact that I pee every half hour, I guess I'm starting to reatain fluid.... Okay, bed time.
May 17. Day-4. VP-16
Chemo infusion.
May 18, Day -3, Rest Day.
Rode the exercise bike for another hour today, rocking out to Bjork the whole way up Little Cottonwood Canyon in my mind. Then I downloaded some more toys for my laptop. Unfortunately it's 500MG hard drive is so packed now I won't be pirating any thing else... Gosh, I can't remember anything else that I did today. I ate a bunch of hospital food, which is getting quite challenging. I watched Evita with dad, I doodled a little, I talked to a bone marrow transplant survivor who told me to take a walk and exercise every day. I decided to go for a walk. I called a nurse but by the time she came to bring me my protective walking gloves, air mask and smock, I was in nap mode. Then I thought I'd read a little Harry Potter, but that put me in nap mode too. The naps were nice. This is a rest day after all.. I'm starting to get a little nervous. It sounds like next week is going to get ugly. I'm on a slippery slope and there's absolutely no turning back now. I just hope I can hold it all together. Sorry that this is starting to sound like most of the other pathetically boring web journals I've read. Guess I must be getting the point across. The Doctors said that when the patients start getting really board it means that it's time for them to go home. I'm Ready!
May 19th, Day -2, Cytoxin
chemo day.
Looking at the world
May 20th, Day-1, Rest Day
Tomorrow is the big day. They call it your birth day here in the bone marrow unit. Day 0, when I get my stem cells back and they hopefully reanimate my chemo swollen/decimated body. It's hard to think of myself as being a normal healthy human being after all these caustic drugs have poured through my body, but I'm willing to try. Don't got much to loose. Here's the big news of the day: I broke into the world of TV Dinners. There just hasn't been enough food around here to keep me busy so I sent out friends and family to to purchase hermetically sealed dinners to satisfy my macaroni and cheese cravings. Mac and cheese is also, I've discovered, an excellent cure for nausea. I've been eating up a storm in here and if I can keep it up, I think I may be okay. As soon as this is all over I can't wait to eat real fresh veggies and salads, but for now they're off limits. Packaged foods to keep the germs away! I also got some pictures to hang on the walls today. A little of Southern Utah, pictures of Mick and Al and Me, postcards. I think it helps, and the nurses have stopped complaining about my boaring walls. I wish I had more to say about my day. Even if nothing is happening within these white walls, it seems as though something should be happening within my soul. Some big change in my life brought on by cancer, solitude, or challenge. But nothing happened today. I just made it from beginning to end, which during days like this, is all I can ask.
May 21st. Day 0. Stem cell
birth day.
May 22nd. Day 1. I just took a shower and am waiting for a masseuse to come visit, something I've been looking forward to all week. My body is stiff and sore and a good rubbing ought to help. My muscles are feeling the effects of this room, the constriction, the confinement, the lack of motion. My skin is getting rough and almost hurts to touch. A massage should help bring blood back into my ragged alien body, which stares back at me from the mirror. Such a strange beast with pleading eyes, unprotected by brows or lashes. I look in the mirror and I wonder what I've become. Where did Jamie go? I've become a walking pharmaceutical. No life left in this infused sack of pale skin. I’d rather not have to look at myself in the mirror. Other than that, I feel fine, just like me The massage was awesome.
May 23rd, Day 2. I had a good group of folks visit me today. John Quackenbush on his last visit before he heads off to India again. Rolf back from his Colorado kayak trip. Bucky back from his Escalante trip. Amber on her way to work and Stu who's about to go the the wind river range. I'm excited to hear of friends travels and I feel as excited about the stories as if I had actually been there. At one point there were three friends from different backgrounds all hanging out together. It was nice. Chris showed up for a visit, promptly fell asleep, slept through Rolf’s visit, woke up, and left. The morning I had mostly to myself, organizing the room, reading Desert Solitaire, and just trying to feel uncluttered. I had the evening mostly to myself too, which seemed quiet until I watched the hilarious "The Hitchhikers Guide to the Galaxy".
May 24th, Day 3. I did have one adventure: I left the room today! First time since I got here about 10 days ago. I put on the gown, mask, gloves, and went down the hall to nuke a Mac and Cheese TV dinner. Oh, it was good! The mac and cheese that is. Leaving the room wasn't all that great. A hospital has never felt like such a dirty place to me. Despite brightly lit corridors and scrubbed walls my minds eye had me walking down a dank, rancid hall thick with oozing bacterium. Spores of disease were cascading through ventilator shafts as I steadied myself to not slip on a floor shiny from a film of polished human grease. Every room I passed contained diseased bodies bellowing fungi and infection, and I didn't even want to think about where the nurse aids had been. The thoughts made me sweat through my two pairs of plastic gloves and suffocate in my mask. After the macaroni was done, which seemed an eternity in such a dangerous place, I retreated to my room where gasping for breath, I threw off the mask and bathed in the steady hum of my overhead hepa-airfilter.
May 25th. Day 4, Friday.
This morning was good. I actually sat at the computer and worked on some graphic design for a few hours. I'd tried being creative before but just wasn't up to it. Today I was just cranking along as if this hospital room were just a good place to work, which it is. Here, I could have all my biologic needs dripped in, vacuumed out, and fed to me as I sat working eternally at the computer. Wouldn't that come in handy for those tight deadlines. Now, I'm starting to ride the waves of nausea. It's a dark, cool and turbulent ocean in here. My stomach generally deals with the fluctuations and surges. It keeps pace with predictable undulations. My body plummets to low arching shallows, then rises to high rolling crests. The sea isn't angry, but has a sensation of something building. Something brewing. From time to time bigger swells appear. The only warning I have is my bodies sensation of ascending towards the crest more forcefully. Then I realize that the waters have changed, and predictability has turned to turmoil. As I am rushed upward, a heated flush overcomes me. My head beads with perspiration.. I see the dark waters at the crest begin to foam and pile up. I fight back a wretch, or suddenly lunge for the bucket. And as suddenly as I have risen, I fall back into the cradle of the oceans skin, treading water, no longer afraid of the heights. That's when I am thankful for the return of a predictable ocean's rhythm, and the calm that can survive despite the waves. When I see the ocean turned completely angry with foaming crests I look for help. A small white pill lands under my tongue and dissolves there. As it's hard, round body turns to dust in my mouth, the massive waves around me slowly dissapate. From froth to crest, from ridge to hump, from wave to ripple. I'm left floating in a calm sea. Not a drop of water is cast to shatter the surface. My mind is as calm as the water, unmoving, frozen as well as the waves by the pill chalk. The rhythm of riding the turbulence is gone, the comfort of surrender presides. Now I have a new buddy. It's one of those things you breath into and try to make the ball go up. They say it’s to fight pnemonia. I just think its fun! Just like the circus game where you try to swing the mallet hard enough to ring the bell. Unfortunately this one dosen’t have a bell, but it does have a plastic thingy to mark my all time high score. Technology, gotta love it.
May 26th, Day +5, Saturday.
I really like all my docs. And the nurses and aids have been great too. I’m fortunate. I’m probably going to jinx myself by writing this but this whole thing has gone so smoothly, I’m wondering if they accidentally gave me the "beginner" chemo rather than the "expert" chemo. I should have warned them that I’m a chemopro. Anyway, I’m not through this yet. Today my white cells bottomed out completely. My body is completely defenseless right now against infection. If I cut myself, got a rash, or came down with a cold it would remain as is, or get worse for a week, which is the estimated time it will take for my body to finally start making infection fighting cells of it’s own. Anything can happen in this week. Doctors say "We’ll see". Nurses tell horror stories. I try not to think about it which is why the subject will change now so my parents arrived today. Too bad dad has a sniffle and can’t come see me. Mom hung out with me for a couple spells, wearing a face mask for fear of spreading something from dad. Our conversation had a nice contemplative pace to it. A change from the recent visits with friends which almost got to be hectic. Life in the cell.
May 27th. Day +6. Sunday
Today was a break through day for me. I finally confronted my fear of needles and started giving myself shots. I’ve been in the habit of having someone else poke me while I look away and dream of some far off place. I’ve been getting shots all the time now for close to six months, and I’ve never been able to look or do it myself. I’ve planned trips around these shots and have waited patiently at home for Christine at times so that I wouldn’t have to do it myself. Well, since I’ve been in the cell I’ve been getting a Lovenox shot every day. Starting today I have to have a Neupogen shot every day as well. I decided that it’s just time to start doing it myself. To tell the truth, my existence has been so dry lately that the thought of stabbing myself with needles seemed as though it might bring a little excitement. So it was as I found myself pinching a batch of defenseless skin on my belly with my left hand and lining up with the needled syringe in the right. The needle looked like a cruise missile ready to rocket at a 45 degree angle, and my hand was getting sweaty behind the controls. The nurse explained to just strike it in and stood waiting. Suddenly I felt like changing my mind. I looked for a way out of it. Then I though of a time when I stood high above a deep pool of water in the middle of the New Mexico desert. The uncertain needle hovering over my skin reminded me of standing on that sandstone brink looking down. The distance was massive, for certain, but I knew that once I was off the lip and plummeting into the air, I’d do fine. So I took a deep breath. Reliving the plunge in my mind I started to run for the lip. I confess I was scared so instead of leaping off the lip I sort of just eked off, but the plunge was on! I was falling through the air, plummeting to the soft, waiting waters below, satisfied knowing that this terrible deed had finally been put into action. Not much time to think as I neared the surface and prepared to spear in. As my feet hit the water my face prepared for the victory splash, but no. Something was wrong! The surface of the water was hard and pushed down like a trampoline. After completely absorbing the full force of my fall, the taught skin rebounded and shot me back into the sky like a ricochet. I blinked. The nurse blinked. The needle was back where it started. She giggled, "you’re gonna have to do it a little harder than that!" I’m still a little squeamish about the whole thing, but I did manage to dive down into the deep waters on my next attempts. Needles just aren’t worth worrying about.
May 28. Day +7. Monday. Mom reads as I lay
Pictures long forgotten
May 29th, Day +8, Tuesday.
The initial small chamber I have entered is the core of the Bone Marrow Transplant ward. The shining floor would make the likes of Mr. Clean envious. The accoutrements of stem cell rescue are in good order after a tangled day. In a small open cubicle an aid is noiselessly hunched over a glowing computer screen. I choke a hello through the mask and proceed down the hall. The short hall ends at two large closed doors. These are magnificent doors. Kept shut most of the day, they suggestively divide the hospital into two parts. On my side is a pure sanctuary of sterility, a virtual haven for immuno-suppressed types like me. On the other side exists all the typical germs, fungi, and viruses that belch forth from the continual rotting of hospital patients. I boldly walk up to the doors and stop just short of smacking into them. Then I turn around and walk back to the large shining "open" button that I passed earlier. Once through the double doors I enter a long corridor, freshly buffed, and start speeding up my uncertain gait. As I approach a speedy pace, my legs start feeling a bit wobbly. As I extend forward with each step, I feel as though my calves are overswinging their reach and that my knees are bending in backwards. I stop, bend over to look at my clunky knees, and then try it again. Eventually I get the hang of walking again and swiftly move into cruise control. I move swiftly down the glimmering halls, now totally empty except for the occasional ghost strolling their IV post through the night. At one point of my loop I pass the nurses station. Then I pass it again, and again, and again, and again. I suppose they’ve seen it before, but I can’t help feeling like a good gerbil, making the wheel go round, and round, and round. A gerbil with a mask on.
At another point of my loop, I encounter a large window overlooking the Salt Lake City valley. The lights of south bound streets extend massively in concentric converging parallels. I search the city lights for landmarks until I can pinpoint home. Then I get that feeling that comes from observing the panorama that contains your small, small world. Thoughts that remind you how fleeting your life is. I’m also pleased with the visual proof that there is a real world out there, my world. Even if it doesn’t have me in it right now. Eventually my nose starts to run, spoiling the fun. Unable to remove my mask, the dripping nose and the need to resolve it instigate a drowning like sensation. To remove the mask would be to suffocate in the rank air of the putrid hospital halls. I realize need to get to my room, and fast. But before I resurface, I must first finish my out-of-room endeavors. I hurry to the fridge and pull out the grape juice. Opening the cap with encumbered plastic fingers. I pour the juice into the hospital mug of choice, the Dixie cup, return the juice, and scurry down the hall. Clutching the juice I nod a muffled "goodnight" to the nurses dozing at the station. Next I hit the wonderful warm blanket dispenser machine, grab a couple toasty blankets, and stuff them under my slick nylon armpit. At this point I really gotta wipe my nose. I run as best as I can, gripping the juice and blankets, to the closed double doors. Then I turn around, run back to where the "open" button is and smack it with my only available elbow. I then dash through the now open double doors, snort goodnight to the nurses in the small cubicle on the left, and crash back into the safety of the cell. Got an infusion of caramel colored platelets today. My immune system could be coming back into effect as soon as tomorrow. Rumor also has it I might be able to get out of here by the weekend. The record time for being discharged is 18 days. I may tie. My pelvis is beginning to surge with marrow growth as I write. Things are starting to happen.
May 30th. Day +9. Wednesday.
The batteries died in my digital camera last night. I’m sorry that I can’t keep up the tradition of taking a new shot and posting it. I’ll comfort myself by going to sleep now. Good night!
May 31st. Day +10. Thursday.
Now it’s once again transition time. Radiation Threrapy up ahead. A brand new list of unknows ahead. Going home to a house that can be my best friend or worst enemy. A new list of "do’s" and "don’ts". Well, it wasn’t long after I named this hospital room "the cell" that I realized that it wasn’t a place of confinement, but a place of freedom. I’m going to miss it here, all the great care I have received, writing stories till 1 am, roaming the shining hospital halls at night. I’ve felt a part of something bigger here. And now it’s time to leave the fish bowl, and return to my small life.
|
