The Bone Marrow Blog

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.


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.


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