Chronicle of a Stem Cell Transplant (and on through to the other side)

Tuesday, April 28, 2009

Sorry, Andy, I wouldn't call it exciting.

Yes, I'm still waiting for the SGN-35 trial to open. That's not to say that there hasn't been a lot happening. I am grateful to have a team who is working very hard to get the trial here ASAP despite a whole lot of small-print finagling which is necessary but delaying my treatment.

While the delay and subsequent rescheduling of all my tests from week to week is a challenge, I feel lucky that I am not very symptomatic and therefore able to ride out this wait. It also makes a huge difference to have regular and effective communication with those managing my care. It allows me to conserve my energy and focus on being as healthy as possible for the start of the trial.

When we went to Montreal last spring to begin the MGCD 0103 trial, this was not the case. Information and adequate care there were not easy to get. At the root of these problems was poor communication and a lack of accountability. While it makes me all the more grateful for the care I am receiving now, I can't help but wonder why it isn't the norm rather than the exception.

Sunday, April 26, 2009

My Current Anthem

(Ironic that there's a bit of a "wait" at the beginning...)

Friday, April 24, 2009

Death - The Sequel

Today and tomorrow, I am attending the second part of The Sacred Art of Dying workshop I began last month. Since then, I've had time to reflect on some pretty compelling questions such as:

Whom have I loved: Who has loved me?

When in this lifetime have I died before, changed, or transformed?

What energies do I want to carry with me into death?

Not exactly idle chit chat. That'll come later when I go to the spa for a post death-workshop massage and pedicure.

Monday, April 20, 2009

I don't care, I'll pay the five bucks.

As some of you know, I've been having a bit of a rough time the past while. Low energy and treatment burnout have been a big challenge lately. Then, today, the ultimate irony - I nearly choked to death on a cough drop.

Can you imagine the obituary?

After a three year battle with cancer, Kirsten succumbed to a Hall's honey-lemon mentholyptus...

I'm laughing now, but we weren't when it looked like it was going to be the Heimlich or 911. Fortunately, the little bugger eventually moved down my airway, but not without a lot of gagging and coughing in between.

Aah, good times...

Sunday, April 19, 2009

I'm a Joker, I'm a Smoker...

Well, the bronchoscopy is over, but now I'm coughing like a five-pack-a-day smoker.

While I had a good doctor and very kind and competent nurses, the procedure itself was extremely unpleasant. Whatever utensils were stuck down my throat seemed to trigger a massive coughing attack in the operating room so, for twenty minutes, I felt like I was simultaneously drowning and choking.

I was trying to find my voice to say "stop," but could not and was only able to remain calm (if you could call what I was feeling calm) through the reassurance of the nurse holding my hand and being fairly certain that the medical team would not knowingly asphyxiate me.

Normally, this is a non-eventful procedure, but I found it and the recovery rather gruelling. Fortunately, I only developed a low-grade fever that broke after about six hours and the cough is better than it was the first day or two. Still, my ribs are killing me and my head aches from coughing so much.

I don't know how the Marlboro Man does it.

Wednesday, April 15, 2009

Save the Plumbing System, Save the Family

So, after eating the heads off my chocolate brethren on Sunday, I headed down to Bellingham with my mom for a little R&R (and a brief trip to Target). We stayed at a cozy little cottage overlooking Emerald Lake that had a huge deck. The birds were chirping, the deer were out - even the neighboring wiener dog paid us a visit (though we suspect she was after our breakfast).

When the sun broke through the clouds, we tried to absorb as much vitamin D as possible (pasty white things that we are). I think it was the first time since last October that my body temperature has been above zero.

Today, I have the pleasure of going for a bronchoscopy. A little camera will travel down my throat to see how and when more radiation might be useful to treat a lesion in my right lung.

A bronchoscopy is not supposed to be a big deal, except that I was given a rather unfortunate description by the referring doctor that has remained with me. When I asked what the procedure entailed, she replied, "Oh, it's kind of like a roto-rooter going down your throat."

Uh, come again? Isn't that the massive spinning drill-bit they use to unclog gunky bathtub drains?

Sensing my alarm (likely evident by my near gagging and grabbing my throat), she reconsidered and came back with "Well, no, maybe not a roto-rooter, more like a fat piece of spaghetti."

Personally, I would prefer not to have pasta or a plumber anywhere in the vicinity.

Friday, April 10, 2009

Happy Easter


Thursday, April 09, 2009

Don't Come Around Here No More

So, I didn't expect to ever write a blog entry about Billy Bob Thornton, much less have an opinion about him, but that's what happens when one is waiting (still no official date for the opening of the SGN 35 trial in Vancouver). Besides, who can resist after his bizarre appearance yesterday on the CBC program, Q.

Being interviewed with his band, which I'm not going to bother mentioning the name of, 'ol Billy Bob went "wackado" on the interviewer. Apparently offended by mention that he is an Oscar-winning actor and screenwriter (god, what a dig), he began the interview by answering questions about his music with "I don't know" and "I don't know what you're talking about."

It appears poor Billy Bob felt his musical integrity was not being taken seriously, demanding to know if the interviewer would ask Tom Petty the same questions. Hmm, tough to say, but I have a sneaking hunch Tom's sold a few more records.

The interview continued to deteriorate; however, host Jian Ghomeshi, who I happen to know is a pretty nice guy from my time at the CBC, remained composed. Jian questioned Billy Bob (OK, I'm not going to type that asinine name again) on his odd behaviour while remaining tactful and appearing not to break a sweat.

Still belligerent, BBT went on to describe concert goers in Canada as "mashed potatoes without gravy," and said that he prefers American and European audiences where people "throw things at each other."

Perhaps it's time for William Robert to reprise his role as Bad Santa. Now that was an artistic endeavour with integrity.

Wednesday, April 08, 2009

Speaking of Trials

Alice Upsets the Jury Box

A few weeks ago, when I was feeling somewhat overwhelmed, particularly by paperwork (people living with cancer, it seems, develop a very long paper trail...), I received a letter from "The Sheriff."

Good grief, I thought, the parking police from journalism school have finally found me. (Insert snickers from my accomplices Catherine, Tara and Tanis here...) Actually, it was a summons to jury duty for some other poor sod's trial.

Well, since I have a pretty decent "sick note," I knew I could get out of it, though not without the added burden of submitting my medical records, writing a personal letter explaining why my medical condition prevents my participation in a jury, and obtaining a letter from my doctor.

Jesus Christ, more paperwork.

It seems easier just to go and fulfill my civic duty and, really, I'd be happy to. I always found the time I spent in court (as a journalist, not a defendant) very compelling. However, as I am imminently beginning my own trial, I think it best not to get sequestered in someone else's.

Monday, April 06, 2009

On Trial. Well, Almost...

And so it begins...again.

The official "work-up" in preparation for the SGN 35 trial has begun.

Scheduling is underway for the numerous tests and procedures (ECG, CT, PET, and another bone marrow biopsy) that must be done before I am actually accepted into the trial (it'd be a bit of a kicker if, after all this time, I didn't qualify). However, lucky me, I've "failed" a stem cell transplant and have enough measurable disease that I'll likely make the grade.

I am happy to be at this point. Hell, I'm happy to be anywhere, as I was told last year in Montreal that this trial wouldn't open "in time" for me.

Well here I am. Now let's get to work.

Saturday, April 04, 2009

The Eighth Deadly Sin...

Why write about cheezies you ask? Because they are ruining my life, that's why.

OK, not really. Yet, despite all I know about healthy eating and the "cancer-fighting diet," despite juicing, growing my own wheatgrass, and tolerating inhuman amounts of tumour-shrinking tumeric, I still succumb to binges of this little orange snack crack.

Even the mere suggestion, let alone catching a glimpse of the ol' Hawkin's bag will send me jonesing like a junkie. Why this particular food, I'm not sure, and I sense addiction to this cornmeal crap could become pandemic.

You might think you don't like cheezies, but then someone, somewhere, will open a bag and offer you one. Later you'll find yourself desperate for a fix, orange-fingered and swearing like a trucker at the defenseless carrots in your refrigerator.

Or maybe that's just me.

Thursday, April 02, 2009

While My Guitar Gently Weeps

So, as my art and writing workshops wrap up this week, I have finally tried something I've wanted to do for a long time (you may want to cover your ears)...


Now I don't claim to be able to carry a tune, but I do admit to fantasies of being a rock star most of my life. When my childhood dreams of being a professional roller skater, yes, roller skater, failed to launch (I blame my parents), I quickly moved on to rock 'n roll, baby. However, writing is as close as I've ever come, and I'm thinking that's probably a good thing given that I don't know how to sing.

Still, I've been waiting for my "moment" on stage and it came this past Tuesday. Well, sort of. It wasn't actually "my" moment, and it wasn't on stage, but in a shop class at West Van Secondary School. No matter, close enough.

I sang the blues, Brazilian and bluegrass with a wonderful choir that requires no talent, just a willingness to sing. Yet, despite no requisite need of ability, I thought we sounded rather good.

My favorite was a piece called "I Belong to the Band"

Granted, it didn't quite sound like that, but, watch out Five Star Motel, Ian's incomparable band (and Mike's and Ryan's and Paul's...god, you guys are so sensitive...), you don't call me Yoko for nothing.

Other musical notes...I am revisiting my guitar with help from my mom (who plays beautifully). I am learning some new chords and trying to toughen up my fingers which feel like they're going to bleed after playing for ten minutes. I wouldn't be surprised if anyone's ears are bleeding too. Sorry about that.