me in my room
My abode safely stashed within LDS Hospital, on day one of 21.

Notes from the Cell (May 2001 BMT)

 

5-15. Day -6, BCNU Chemo.
Well, my first day in the hospital is almost over. this is how it went: I got admitted feeling fine, but soon I got the feeling that I was one of those people in the movies who is blindfolded, hands bound behind the back, and gets asked if they have any last requests. It's a funny feeling to be looked at that way. Then there was a lot of talk about how bad this first chemo is. It's been okay. I've got some bad chemo brains going, a flamed up sore jaw, and minor nausea and vomiting bouts but nothing much. Almost worst was just seeing how much medication I'm going to be taking. It was enough of a shocker to make me want to go running for the hills. Now, however, I''m committed. The first full infusion is over so now all the ensuing side effect mania must follow. No turning back. 

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.

 

 

Me in the mirror

May 16. Rest Day
Well, so far so good. I handled the gnarly alcohol infused chemo quite well, and as forewarned, I woke up feeling like a new man this morning. Plenty of visitors and phone calls kept me busy between working on this web site and learning how to do everything on this archaic PC laptop. It's so slow! Rolf says I shouldn't be in any rush, but once you get used to a fast computer, it sure hurts going back to a slow one. Anyway, I rode my exercise bike for an hour today. You know, the goofy kind with handle bars that giggle back and forth as you peddle. An hour seemed like a long time at the time, but as the day dragged on I started to get the feeling that it wasn't quite long enough. I listened to Tom Waits on the bike, Beck while computing, now I'm ending the day listening to my "Hair loss and You" CD, the one that my nieces Rachel and Alexis sing along with. Earlier I watched "The Virgin Suicides" with dad. It was an amazing slice of life from teenage years, beautiful, and I've been crying ever since I told dad "that wasn't that depressing". I guess I was crying for the passion, intensity and innocence of youth. I suppose I miss those times after all. Especially sitting here in this room where I'm constantly trying to conjure up my spirits beyond the bounds of this white container.

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.
Well, I'm starting to feel run down. My face is all flushed and red, like a pink jelly bean. Chemo flavored! I've been beating my head against this computer all day trying to get this new web site to link. Some friends promptly came to the rescue so I hope the have pictures up soon. Dad has once again been hanging with me all day, we just quietly work on our separate laptops, or he reads and I rest. It's nice, having someone else in the room. It helps you retain you sanity to just hear another persons breath, or hand slid across fabric. Doctors are making their rounds as normal. They're always fun to talk to because they are all so cheery for some reason, like rosy cheeked cherubs. I didn't ride my bike today. I feel bad about it. I'll probably skip the shower too. I'm feeling a little wiped out.

 

 


The breakfast of champions

May 18, Day -3, Rest Day.
Well, here I am. slightly more swollen than before, but still kicking. I'm retaining water, I'm up to an all time high of 136 pounds! My feet look like water balloons and my face is round, but that's okay, I'm about to go to bed. 

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!

 

 


Call me Puff-Chemo Daddy

May 19th, Day -2, Cytoxin chemo day.
Well, I'm just waiting for the chemo to come my way. Oh, what a feeling it is. I'm a little fearful of this one because I have had Cytoxin before and don't have real fond memories of it. Not that I have really fond memories of any of the chemoís I've been through. The interesting aspect of it all is that this could possibly be my last chemo ever. It had better be because if this doesn't do the trick, nothing likely will. So keep you fingers crossed and I'll try to take myself on my best mental journey through chemoville where Cytoxin is pouring out of the sky and is cremating the remains of my cancerous cells, black smoke of burning cancer filling the sky and a mean storm coming in to blow away the ashes.  Visualization therapy. Along with visualizing myself outta here, I've got to visualize the decimation of these bezerk cells that don't know when to stop, like a kid with too big a bowl of ice cream.

 

 


Kathy is back to help keep me company too.

 

Looking at the world
for something
out there
from in here.
A calming of desire.
An instrument to rhythm.
From behind this glass
looking out
at the world 
for some feeling
that only lives inside me
can only be real 
inside me.

 

 

 

May 20th, Day-1, Rest Day
Well, today was a long day. I won't say boring because Kathy just read to me that only boring people get bored. So I've been really busy not being bored, or restless, or sick of this room. I had a lot of visitors today. Tom, Mick, Al, Dad, Kathy, Joyce, Ted, Jim, Chris, along with the standard entourage of nurses, aids, and doctors. Looks like I survived yet another day after chemo.

 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.
Got the stem cells today. They tasted awful as they entered my body. They are infused in a solution that prevents the cells from bursting when they are frozen called DMSO. I sucked hard candy to help alleviate the downright awful taste. A head full of Benadrly also helped me stumble through the experience. It was rather anticlimactic to think how now all these procedures are done. Now it's just a matter of me hanging out here and regaining my immune system. It would be easier to have something to do, but I just hang, for now: muscle through the occasional fever or infection that may come my way.

 

May 22nd. Day 1.
Well, I actually had the room to myself for a little bit today. I had a leisurely morning reading a SKI magazine. A daunting ride on the exercise bike while listening to Ray Bradburyís Farenheight 451. I also took some time to write in my journal. It felt strangely unfamiliar as I've been spending so much time typing that I have forgotten how it feels to write with a pen: relaxing. 

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. Iíd 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.
Well, I didn't actually write today. I futzed with computers enough to decide that I needed a break. Besides, uploading to the web site hasn't been easy lately. 

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 Rolfís 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.
Well, I'm not sure what I've been up to today. I feel as though I've done nothing and done it well. I guess I've just been bouncing about the room. I've had a ton of bloody noses which kept interrupting my already scattered tasks. Maybe that's why I keep ending up laying on my back in bed wondering what I'm doing.  But what's amazing is that I think time must be speeding up on me. I have had few visitors and have done nothing to make time go flying by, but it has. 

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.
Well, I had my first real complaint last night. Something suddenly caught up to me. Something that kept me tossing and turning with flushing itchiness as I hopelessly wished for slumber. It took a double dose of sedatives to wipe me out of my own writhing misery. "What could cause so much grief" you ask? "The very end of the digestive tract itself!" I tell you. Now, an kaleidoscope of creams, gels, and ointments later, I'm doing Okay.

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 itís 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 dosenít have a bell, but it does have a plastic thingy to mark my all time high score. Technology, gotta love it. 

 

 


Notice the bacterium oozing off the walls behind me.

May 26th, Day +5, Saturday.
Every day Iím visited by a doctor twice. The visits are all the same. The doc comes in slowly. Gliding, rather than walking. His soft face smug, framed in the coils of a stethoscope. He never sits, but maintains his presence through standing, smiling through eyes accustomed to gazing upon hairless beasts like myself.
"So...." (long pause) "feeling nauseous?" 
"No, not really" I stammer, sensing disappointment.
"Mouth sores?"  He spurts with raised eyebrows.
"Ah, no. Not yet" I say, double checking my mouth with my tongue just to be sure.
"How about pain?" He asks, with furrowed brow.
"Uh, no. Not really" I say as my neurons search for something to complain about.
"Light headed?" One eye enlarges, imploring.
"Nope" I say, wondering how light headed I need to be before I say that Iím lightheaded.
"Well, okay then, you're doing great" His face is now satisfied, marvelously content.
When the doctor says "Well, okay then, you're doing great" it means that on another plane, in a parallel universe, the doctorís astral being is gathering momentum. Within moments, this astral momentum will hit the doctor standing in my room in the real world and heíll be shot out the door. I sense this paranormal happening that shrouds doctors in mystery, this gathering of momentum, and in that very same instance I am filled with insecurities, questions, and demands for the unknowable.
"Www, wwhat about my cough? I still have a cough?"
"Itís not a problem"
"Www,wwhat about that transfusion, can I make it all the way without it" 
Then I see the cosmic momentum hit. Even though he is standing still, answering my questions, his body starts sliding towards the door. Heís facing me, giving me all the information I need in a concise, friendly manner, but his shoes are sliding across the floor towards the door as he stands and patiently answers.
I know this next question will probably be my last so I search deep but end up saying the first thing to pop into my mind.
"Wwwwhat about getting sick, nowís when I probably get sick, right?"
The door swings open on its own and the handle connects in his delicate hand.
"Well, with how well youíre doing thatís not necessarily the case. Youíre doing great. See you tomorrow!"
Boom, and heís gone in a flash.  The room is filled with the negatively charged particles of burnt rubber from another plane. Iím left sitting on my bed, flushed with a maelstrom of  yearnings and questions that refuse to order themselves or get in line for the next doctor visit. Two times a day, everyday.

I really like all my docs. And the nurses and aids have been great too. Iím fortunate. Iím probably going to jinx myself by writing this but this whole thing has gone so smoothly, Iím wondering if they accidentally gave me the "beginner" chemo rather than the "expert" chemo. I should have warned them that Iím a chemopro. Anyway, Iím 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 itís own. Anything can happen in this week. Doctors say "Weíll 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 canít 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.

 


Ready to battle the germs

May 27th. Day +6. Sunday
Well, survived another day with remarkable ease. People around here are starting to get suspicious. The nurses are wondering "who is this guy who thinks heís on vacation here?" Iím getting afraid that theyíre going to start running me down the hall to fetch my own drinks for a change. Gosh, but thereís germs out there!

Today was a break through day for me. I finally confronted my fear of needles and started giving myself shots. Iíve been in the habit of having someone else poke me while I look away and dream of  some far off place. Iíve been getting shots all the time now for close to six months, and Iíve never been able to look or do it myself. Iíve planned trips around these shots and have waited patiently at home for Christine at times so that I wouldnít have to do it myself. Well, since Iíve been in the cell Iíve been getting a Lovenox shot every day. Starting today I have to have a Neupogen shot every day as well. I decided that itís 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, Iíd 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, "youíre gonna have to do it a little harder than that!" 

Iím 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 arenít worth worrying about.

 

 


A little morning sunbathing in the cell.

May 28. Day +7. Monday.

Mom reads as I lay
and bury my face
white sheets extend
a salt flat horizon
crossed only by
shiny red pipeline
new opaque blood 
creeping itís way
in a electronic pulse
across void

Pictures long forgotten
pushed through a line.
TV noise
winding off tape.
and computer whirrs
plugged in
air pressure
filtered in
patient charts
wired in
quenching live cells 
pushed through a line

 

 


The great divide

May 29th, Day +8, Tuesday.
Every night I leave the cell and dive into the rancid depths of the hospital. About midnight, after Iíve finished my writing, my movie watching, and my pharmaceutical hygienic procedures, the hospital takes on a new stillness. Punctuated only by the sound of handwashing, the skittering of small wheels on tile, or the occasional quiet conversation, this stillness draws me. I don my heavy nylon smock, blow my nose one last time before suctioning the thick mask onto my face, and writhe into two pairs of plastic gloves. I take a deep breath, surprise myself with the Darth Vader effect, and open my door to the night hospital.

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 theyíve seen it before, but I canít 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. Iím also pleased with the visual proof that there is a real world out there, my world. Even if it doesnít 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.
Well, Iím in too much marrow pain to write much. Iím gyrating to the rhythm of cell growth, and cranking Beck through my headphones. Great day today. Just was nice. Iím now starting to look at this place differently. Not like I have to spend an eternity here, but like Iíll be leaving soon. Iím also starting to be filled with questions about my return home. How long before I can have lettuce? miso? Or most importantly sashimi? How long will I have to avoid the now potentially deadly fungus? People with colds? Snotty children? They advised me to not work full-time for three months. Youíd think that someone who spent three weeks confined in a room wouldnít have problems entertaining themselves in the wide open world, but Iím wondering what Iím going to do with myself. Ahh, yes. One day at a time.

The batteries died in my digital camera last night. Iím sorry that I canít keep up the tradition of taking a new shot and posting it. Iíll comfort myself by going to sleep now. Good night!

 

May 31st. Day +10. Thursday.
This morning I got the news that Iím going home tomorrow. I know the news should have excited me, but instead it filled me with great fear, anxiety, and sadness. I must say that today has been the most emotional day of my stay here. Most visitors found me fighting back tears, some found me unable to hold back any longer. I finally had the hang of the cell. Life was quite good, predictable to the minute, comfortable. I had accepted its challenges and its unknowns. 

Now itís 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 "doís" and "doníts".

Well, it wasnít long after I named this hospital room "the cell" that I realized that it wasnít a place of confinement, but a place of freedom. Iím going to miss it here, all the great care I have received, writing stories till 1 am, roaming the shining hospital halls at night. Iíve felt a part of something bigger here. And now itís time to leave the fish bowl, and return to my small life.