Monday, October 20, 2008

October 20

Had my meeting with the doc but I don’t know too much yet other than that I came through the chemo with flying colors. An evaluation of progress, with CT scans and perhaps another biopsy, won’t take place for another several weeks. Theoretically, my bone lesions will diminish and energy level will be back to more-or-less normal in a couple months. My counts are good for the time but I have to be careful for a pretty long time. I’m allowed to go back to fresh fruits and veggies at home if I’ve washed them or know who did, but it’s recommended that I avoid restaurants for 3 months, and buffets and potlucks for longer than that, no 7-11 slurpees or soft serve ice cream for a while, no gardening for a year (I’m supposed to avoid dirt…. but I’m a dirt geologist, how can I avoid dirt? Dirt is what I do!), no home renovations for a year, no new plants in the house for awhile, especially the Fungus-Spewing Fuchsia I saw at Home Depot.

My appetite is mostly back, I’m enjoying Alicia’s cooking, and furthermore Regina and Gemmie have brought over some delicious stuff. I’m in no danger of losing weight. Au contraire… Days are not overly exciting, but I still have more to do than I have time to do (which is not stopping me from nice afternoon naps), and the best part is the quality time I’m spending with my daughter. Got to see Will too; he was in for 3 days over the weekend and an epic Monopoly game ensued. My mother and brother arrive in 3 days. I may be getting empty-nest syndrome after everybody leaves. I just made that up about the fungus-spewing fuchsia.

Well, it’s time to wrap up this blog. Blogs…. I’m getting to be more and more like a 20-year-old all the time. I tried to avoid getting a cell phone but Wendy got me one anyway. Then once I had one my students taught me how to text-message; I’m the only guy I know of my generation that knows how to text-message (I even know “lol” and “brb” (but thank god (that little-known Navajo tree god) I’ve never used them; please shoot me if I do). And now a blog. What I need is to get away from all this technology and communication, and get off by myself somewhere on the rim of the Grand Canyon, sit down with my feet dangling into the abyss, with a thermos of lapsang souchong tea and a down jacket, and watch the sinking sun turn the buttes and temples to ochre and orange and siena and terra cotta (yes I can actually recognize those colours!), while a canyon wren sings, and sit there till the darkening sky turns to indigo, my favourite colour, and the first stars appear…. all the while marveling, but not at the twists and turns that life throws at us. Rather, I would marvel at the only reasonable conclusion that can be drawn when one looks at the big picture:…. that I have been, and still am, fortunate.

I love you all.

Jerry

Wednesday, October 15, 2008

October 15

Discharge Day. My own bed tonight. Alicia’s cooking instead of hospital cooking. Walking along the river instead of in the hallways. I meet with my hematologist on Monday; he will attempt to evaluate the success (or lack of) of the transplant. Which will be difficult because I am part of the 1% of myeloma patients who do not secrete the “M proteins” which are used to assess stage of the disease. Enough stem cells were extracted to allow for a second transplant; in a small minority of cases the first transplant doesn’t take and a second one is done soon thereafter. What a drag that would be!! Expectations for the next few months: will be tired and occasionally queasy for the next few weeks (?); appetite will gradually return; blood counts will gradually rise over the next couple months but my immune system will not be back to completely normal for over a year. I will be avoiding crowds for a while. I expect to resume teaching in January.

My last thoughts upon leaving the hospital:
1.The Tom Baker Centre is a well-organized place with great doctors and nurses and physiotherapists and nutritionists and technicians and housekeepers.

2.The thing I’m going to miss about this room is the glow-in-the-dark stars and planets and comets that adorn part of the ceiling. Their installation must have been directed by a kid, because no adult would have that much imagination.

3.I have wonderful friends.

4.I’m not particularly anxious about anything in particular. There’s a cliché about cancer patients, whether they’re completely cured or have only a month to live, having epiphanies and seeing each new day in a different light, treasuring all the things that they and everyone else always took for granted. But I am lucky enough to have treasured those things all my life. I have been flashing back to some episodes of my life….

My Dad teaching my brother and I how to catapult stick-arrows into the sky along the Kern River in California;
Patty and I singing a love song to each other in harmony in our wedding ceremony and me choking up (it didn’t work out in the end, but at least we had half the audience crying!);
The nurse handing me Will, age 10 minutes, and leaving us alone, and me singing “Hush Little Baby Don’t You Cry” to him while he looked me straight in the eye and tears rolled down my cheeks;
Lou and I sleeping in the mountains of sand in the Erg Occidental in the Sahara Desert;
Lou and I traversing the Desert of Death in Afghanistan;
Sleeping on the beach in the Grand Canyon numerous times and looking up at the narrow strip of brilliant stars bordered by the black canyon walls, while a canyon wren trilled in the background;
My first run of the upper Red Deer River, in a toy raft; running all the grade III’s without scouting and not flipping until attempting the Grade IV without scouting;
Our guide leading Will and Thom and I across untracked slopes of Mt. Kilimanjaro, where tourists never go, in search of obscure outcrops of glacial deposits;
Clay and I rock-climbing to the top of Salaginella Wall in Yosemite Valley, needing every ounce of strength we had, each of us falling on the way and held by the other, each of us holding the other’s life in his hands;
J.T. and Cathy and I making a then-illegal July backpack in the western Grand Canyon, featuring heat exhaustion and extreme dehydration and incredible thirst, and the epiphany I had when I stumbled into the green strip along Thunder River and stuck my cup into the waterfall and drank, realizing for the first time the meaning of water;
Will and I photographing the landscape with great exhilaration in the Sossusvlei dunes of Namibia;
Re-meeting Wendy at the Brentwood Starbucks after 25 or 30 years, all because Alicia wanted a fancy coffee;
Watching Alicia grow into one of the most compassionate young women on Planet Earth…

…..and I think that in the part of my life still to come, I don’t plan to do anything or see anything differently.

5.Did I mention that I have wonderful friends?


I’m going to make one more post to this blog after my meeting with the hematologist on Monday.

Tuesday, October 14, 2008

October 14

Brian and I took the bike photo and found a pretty good Thanksgiving dinner at the hospital deli. Wendy took him to the airport this morning.

I'm a little bit queasy today but blood counts are rising and it looks like I've made it through without the major side effects. They say I'm ready for discharge as long as I have a caregiver. My local caregivers are sick or potentially sick so I'll be here another night; Alicia flies in tomorrow and I will be in good hands then! Perogies and peas tonight.

Monday, October 13, 2008

October 13

Day 10 post-transplant. Mike the nurse says by Day 9 most patients are on narcotics from mucositis pain. I havn’t had any pain or nausea or fever yet, just one mild mouth sore. I’m almost, but not quite, ready to claim that I’ve made it through without the big side effects. The blood counts bottomed out yesterday (white cell count was 0.1 (normally between 4 and 11)) and are just starting to rise today as those stem cells, troopers all of them, do their thing.

Thanksgiving Day. Brian Menounos flew in from Prince George for a visit and we are going to seek out a takeout turkey dinner if they exist (Denny’s?). I have to avoid restaurants and the turkey they’re going to serve in the hospital today doesn’t have me too excited. If all else fails at least I’ve been getting pumpkin pie: yesterday I got an afternoon pass and Brian and Kristyn and I watched a DVD at my place while Kristyn baked a couple pies. I have to count another supporter on my supporter list: Brian’s son Nathan, age 2, who made me some finger paintings that now adorn my wall.

The doc just came by on her rounds, said I’m doing amazingly well and joked that I could have done this on an outpatient basis. Stuff could still happen in the next day or two, but since it’s Thanksgiving Day I’m going to assume that it won’t, and give thanks to my god (a little-known Navajo tree god). Another afternoon pass today; our plan is that Brian takes a picture of me on my bike and I post a print of it on the Inspiration Highway, labeled “Bicycling on Stem Cell Transplant Day 10”.

Saturday, October 11, 2008

October 11

The hospital is a condensed microcosm of humanness. People dying, people being born, frustration, grief, joy, and huge helpings of compassion. Looking down on the parking lot, I see the steady stream of visitors coming to cheer on their loved ones; they come and go, come and go. On the ground floor of the building I see a woman who might be 100 years old, wrinkled up with very thin wispy white hair, barely conscious, being pushed in her wheelchair by a young boy who is probably her great-grandson; it’s taking all his effort to push the chair but his Dad doesn’t help because the boy’s effort means a lot to all of them, especially the boy. There is a girl about 7 years old, bald as a billiard ball from chemotherapy, walking hand-in-hand with her mother; they are both laughing. The scene stops me in my tracks; it says most everything important there is to say about the human condition. On the wall of the hallway near my room is what’s labeled “Inspiration Highway”, an expanse of bulletin boards and blackboards on which patients over the years have left their thoughts and messages and photographs. There are some clichés, like “Miracles happen” and “Jesus loves you”, and some more heartfelt ones, like

There is no try. There is only do or not do. (Yoda and Glenn)
This place has lots of good in it.
I’m going to beat this and get the hell out of here.
It’s not over till I win.
Our Dad and Grandpa is a real fighter with lung cancer. We love you. (signed by 2 generations)

There are several photographs sent to the unit by former patients that underwent transplants; in each the patient is holding a sign showing the year of the photograph and the year of the transplant, sometimes in an exotic setting, sometimes showing the person on horseback or winning a racquetball championship.
Poignancy is thick in the hospital. I understand why doctors and nurses have to detach themselves a little.


Day 9 since the chemo. The stem cells are starting to do their work; I can feel them tickling in my bloodstream. I should be feeling worse side effects but it’s not happening yet, in fact the doctor is even letting me out for a couple hours for dinner; I'm dumbfounded . It’s Thanksgiving weekend. I’m thankful.

Thursday, October 9, 2008

October 9

I'm now committed, but homeless. Which is to say, they want me to stay in the hospital now because my white blood count is down to 0.5, which we could for the sake of argument round off to zero, but I'm lounging in the day-use section because they havn't found an overnight bed for me yet.

So the way this blood stuff works is I think like this: The chemo I had last thursday wounds the cancer cells and the hair cells and the throat-lining cells, all the rapidly-dividing cells in the body, but doesn't kill them right away. They die an agonizing death a week and more later. That's why my blood counts are diving now, because the chemo has finally killed off the blood cells that are my friends (collateral damage) as well as the blood cells that are not my friends. And that's why the bad side effects often kick in about 8 days after the chemo (let's see, when is 8 days? HOLEY MOLEY THAT'S TOMORROW!!!). But meanwhile the stem cells that were reintroduced on Thursday are just starting to produce more friendly blood cells (it takes them a while to get going because they are powered by gelatinous macaroni-and-cheese and lukewarm instant mashed potatoes (see below)) so after a few days of flattened counts the numbers will start to rise again, depending somewhat on how warm the mashed potatoes are. It's all pretty amazing.

Appetite still depressed although I find that peanut M&Ms are going down well. Rice Krispies worked for breakfast, particularly when I imagined cancer cells imploding with each snap, crackle, and pop. For lunch they served mac and cheese and instant mashed potatoes. The phony potatoes didn't taste very good but at least I could play with them the way Richard Dreyfuss did in "Close Encounters of the Third Kind". The macaronis were joined in common union by a brown, salty, congealed gel perhaps gathered from the axles of an abandoned D-8 Caterpiller tractor. I got half of it down nevertheless. Regina (remember....the Gallagher librarian?) has promised to make me some real mac and cheese so I hope I still have some appetite at the time.

Have just heard the news: I am being moved to room 567.

Have moved my stuff. The window is facing northeastish; there's probably no finer view of the parking lot anywhere in the hospital. But here is a stroke of karmic convergence: on the wall is a giclee print of the mountains west of Longview, the exact model that I gave Wendy for her birthday. They can't promise anything but they think I will probably be in this room for the duration of the crunchy period coming up.

Wednesday, October 8, 2008

October 8

No news. They're still sending me home for overnights. I still don't have much appetite. They promise I will get sick by this weekend. Whew, what a relief.

Monday, October 6, 2008

October 6

Let me add two more supporters to my previous list: my ex-wife and the head honcho of the local myeloma support group, the latter of whom came to visit today. I am getting so many calls and visits I can't keep up (so please don't be offended if I don't call/email back right away!).

I'm back home again. Went back to the hospital this morning to find they put some emergency patient in my room while I was out on the weekend pass. So I was put in the overflow section one floor down, which is day use only. So not only did the doctor say I COULD go home again if the blood counts weren't too down, the nurse said I SHOULD go home because I didn't have a bed. Fortunately Lou and I have practiced all our adult lives sleeping in unusual and uncomfortable places on Acme trips (like the roof of the picnic shelter south of Kanab and the raised rim of the water well in the middle of the Sahara Desert-- which Alicia still hassles me about), so if tomorrow they want me to sleep on the treadmill or in the patient refrigerator I won't think twice about it (other than this is ralph klein's fault for imploding the General Hospital).

Blood counts starting to fall but no really bad side effects yet.

Vanessa, one of my grad students, brought me the desert-scene painting she has been working on for me. It's beautiful. Wherever that is, I would like to be there.

Sunday, October 5, 2008

October 5

I've temporarily escaped from the Big House, but only because they let me. Time off for good behavior. Since nothing much happens for a couple days after the transplant and I wasn't puking or feverish, they let me out on a weekend pass, provided I had a caregiver* with me at all times. So i took my creamed-corn b.o. out into the lovely autumn world (but it has passed by now). Wendy would have given care but she's come down with a cold/sore throat so she's staying away. Chanone and Kristyn took first shifts and tonight Cathy is looking looking after me. I don't feel that great; kind of a slight queasiness/stonedness and my appetite is down to 50% or less. The doc said that was probably was from the preservative that the stem cells come with. Just a little taste of things to come. Kristyn and I went for a walk along the river this morning and it was maybe the most beautiful day of what is probably the most beautiful fall I have ever seen in Calgary. Despite feeling a bit crappy I was so happy to be out there with the wind and leaves blowing over my face instead of in my hospital room.

*Let me tell you about my support system. I mean, I already knew I had good family and good friends and good students.... but the amount of support I am getting showered with is stupendous. My kids and Ma and brothers and niece and nephew and cousins, Wendy, present colleagues and friends and students, past students and Gallagher librarians, Grand Canyon alumni, book clubbers, Acme gang members. If I weren't the tough-as-nails, leather-skinned, gun-barrel-hard, honed-to-a-razor's-edge guy that I am, I would get kind of misty-eyed when I think about all the time Alicia is taking off to take care of me. I didn't know there was that much love out there in the world.

Friday, October 3, 2008

October 3

The second of the two main events happens this morning: The Return of the Stem Cells, the actual transplant. These were extracted from my blood a few weeks ago and are frozen in a couple of ziplocks somewhere. They will be the basis of my new blood. I will be as a baby with a brand new immune system, with all childhood vaccinations wiped out. I get revaccinated in several months. Possible effects during the infusion: nausea, fever, and most interestingly, a strange taste in the mouth that also shows up as a body smell that lasts for a day... described by different parties as corn-like, tomato-soup-like, garlic-like, or metal-like. Fortunately no one has described it as olive-like or asparagus-like. Alicia and Chanone will be observers. Stuff
has arrived. The rolling freezer withe stem cells. A rolling computer. A cart carrying a bunch of stuff. Two registered nurses and two helpers. A nurse is now thawing the bags out and syringing stuff out and then into an IV bag. Bag is hung. Here goes.... They're infusing. My cell phone is ringing. One bag is done. Blood pressure check and temperature check every five minutes. No symptoms yet in my senses, but the other people in the room smell The Smell. One says corn. One says garlic. Alicia says it smells like going into a cafeteria. It's done. Benadryl now going in. I never got the taste thing. No fever. A bit of spaced-out feeling. Paperwork being filled out. It was all pretty anti-climatic, considering what an epochal event this is in my life. One of the nurses says I was a boring patient (no side effects, no Code Blue) except that they've never seen real-time blogging before. They're all gone now. Back to hydration solution. I'm sleepy.

Thursday, October 2, 2008

October 2 Part II

Still sucking on ice chips, have to do so for 6 hours. Alicia is off finding an ice cream cake because it's my birthday today. She is such a sweetheart, being the dad of Alicia and Will is such an honour. The chemo was my birthday present; considering my situation it's probably the best present I could get. Who gave it to me? The taxpayer I guess.... thank you. I've had two staff visitors since the chemo: the physiotherapist and the spiritual advisor. The physio is assigning me a series of leg and upper body theraband exercises, and 6 5-minute walks per day. Well, that sounds pretty pishy-tosh right now, but i guess when i'm feeling crappy in a few days getting out of bed to do a 5 minute walk is going to be a real effort. In fact he wanted to know how many stairs there are between my front door and my bedroom, I guess it may be dicey getting up those stairs when I first get home. Krista the BMT nurse said this procedure is about as hard on a body as open-heart surgery. The spiritual counselor or whatever he is is a young very nice guy. He said "you have that look" (of someone who's not too worried). We established my lack of religious tendencies right away, and talked about the desert as spiritual guide, He seemed quite intrigued.
One of the mega-diuretics, which must have been formulated for Superman or WonderWoman, has worn off, yay!! I can now go 25 minutes between pees. I'm going to go check out the treadmill.

October 2

The first of the two main events starts in a few minutes: the CHEMO!! Yes, gentle reader, 5 minutes of infusion of a poison that will kill off those bad plasma cells and also kill off my immune system and my hair and make me nauseous and inflame my throat lining. Otherwise it's pretty harmless. I'm sucking on ice chips and popsicles as a prelude because the colder the mouth during and after the infusion, the less the drug effects the mouth and the lesser will be the mouth sores next week. Only two minutes to go!! Anticipation is building!! Blood pressure check! Temperature check! Almost ready! 30 seconds to go!! Cool washclothes ready!! The nurse is fiddling with the switches...... HERE IT COMES!!! IT'S GOIN' IN!! So far no sensation.... now, maybe a teeny bit of light-headedness... the IV pump is beeping, too much resistance in lumen in the catheter, switching to a different lumen... first syringe done, onto the second... the described metallic taste is not developing... but getting hot on the sides of my head... feeling light-headed/dizzy.... like being stoned but without the dope... head is very hot, really weird! OK, it's over, head is cooling off, getting less dizzy. No nausea.
Whew, that was fun!
Now they're feeding me diuretics to make me pee out the drug.... what irony.

Wednesday, October 1, 2008

October 1

I've just arrived at my home away from home, Unit 57 in Foothills Hospital. I'm in in room 571, a palatial suite, normally reserved for kings and diplomats I presume. Alicia is here with me, delivered from the airport by Wendy and her friend Leila. The service here is pretty amazing: the nurse was grilling me about any history of infected hangnails, etc., when two people come in to "take pictures". Mug shots in the hospital? No, they take pictures off the wall and put on new ones, so patients don't get bored with the pictures. Being here only 30 minutes, I wasn't bored yet. There are two TV lounges and some DVD players (they can be kidnapped into individual rooms whenever) and a kitchen stocked with food that patients can remove whenever, or cook in. And a treadmill and an exercise bike. One floor below is a gigantic and very complete exercise room. I'm waiting for some doctor or another to come and inspect me and then apparently I can get a day pass for a few hours so Alicia and I can go out and walk in the yellow leaves. And what is my mental state you ask? Well, although i'm not looking forward to feeling sick next week, on the whole I don't seem to feel any differently than if i didn't have cancer and was sitting in my office at the U. Equanimity. There were scary times at the beginning.... like when my GP read out the radiologist's report, on Valentine's Day... it looked like either myeloma, or an organ cancer that was rapidly spreading. My first thought: I'm going to have to revise my will, quickly. I still felt pretty calm when I told Wendy over the phone that I had cancer, and I still felt calm when she walked in the door for the Valentine dinner I was going to cook her, but when she put her arms around me I burst out crying, there was some stuff in there waiting to come out. I cooked the dinner. I also got a little teary-eyed when I told Kristyn and Chanone, before I knew what kind of cancer i had. Kristyn went with me on my first visit to the Tom Baker Centre and I had the biopsy and diagnosis right then and there: myeloma. Of the possibilities suggested by the radiologist, that was by far the best of the bunch. Since then I havn't felt particularly bothered about having cancer... although it's terminal in the long run, so is life without cancer. Emotions in general are a little keener now, my connections with my friends and family are keener, I love them even more than I did.

It's a beautiful day. Alicia and I are going to go for a walk.

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