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

Monday, March 31, 2008

Guess What...I have Hodgkin's!

Thank you, M.D. Anderson. Just in case we weren't entirely clear, their second opinion came back last week and, aside from not stating very much else, it did indeed confirm that I have Hodgkin's. It would have been a real kick in the ass to find out I was working this whole cancer gig for nothing. While "underwhelming" to say the least, we are making progress with other centres including Dana-Farber in Boston and McGill in Quebec.

In the meantime, I've been doing everything I possibly can to help my body heal. It's been interesting these past couple of years - this week marks two years since my initial diagnosis - as I feel like I'm doing enough to aid my mind and body in the recovery process, and then I will read or hear something that propels me to do more. As a result, I have learned how important it is to not beat myself up for not doing everything, every single moment of every single day (is this largely a Capricorn tendency?)

Still, not one to be complacent, my latest venture has been into raw foods and juicing. Last week, we purchased a Breville Juice Fountain Elite. This thing is a Cadillac among Yugos in the world of juicing. I am very pleased with the concoctions I have made so far and have seriously upped my beet intake (I can't remember the last time I ate one, but now I'm drinking them everyday). You know what that means...

This "tidying" up of my eating habits also has me investigating the wonderful world of colonics. I know. Ick. Bleck. I seriously run the risk of becoming one of those people who discusses the "results" of their weekly sessions inappropriately during social occasions. On the other hand, my innate squeamishness and seeming inability not to make gross noises when the word "colonics" comes up has me thinking I am very immature.

Something really did strike me funny though in my new pursuit of a colonic "therapist." I was reading the health pages of a local publication and came across the listing for a colonic hyrdotherapy centre in Vancouver called "Exodus." Really. I can't help but hum Bob Marley's tune by the same name. Movement for ja people, indeed; and other things, apparently.

Speaking of things that end with "us," I was driving through Gastown the other day and noticed a new high-rise development. As I am always amused by the self-important, anthropomorphic names given to condominiums, such as "George" on Richards Street, or the newly-appointed "Evelyn" in West Vancouver, and how they could go for cocktails with "Sophia" in Mount Pleasant or "Olive" in Yaletown (but certainly not uncouth "Jasmine" on East Hastings), you can imagine my nearly driving off the road when I saw "Terminus - the end is here" on Water Street. Woops. Someone wasn't thinking.

He's certainly not going to be the popular kid on the block.

Monday, March 24, 2008

Back From Seattle

I guess the point of writing an update about our trip to Seattle should be to say how it went with the doctors, rather than highlighting the fact that I went to Sephora to get my Bare Escentuals starter kit. Or, that we found ourselves at the Irish pub, Fado (it was St. Paddy's Day, after all), until 2 in the morning listening to a bad band do great covers like, "Don't Stop Believin."

The Seattle Cancer Care Alliance to the right and the city to the left.


The two doctors I met with on Monday were decent. Although, the first one, on fellowship, repeatedly rubbed his nose while we tried not to grimace (until we had to shake his hand at the end of the discussion). The second doctor was informative, though not able to tell us that much more than we already know (we are so smart).

The focus of the talk was on two primary treatment options. The first, SGN 35, is a fairly early clinical trial taking place in four U.S. centres; unfortunately, Seattle is not yet one of them, though I may be able to have it delivered there. The second option is a nomeleoblative transplant, or "mini-allogenic," different from my initial autologous transplant in that I would be using donor cells, likely one of my parent's, rather than my own. This is not necessarily a fun option and also comes with a price tag of nearly half a million dollars. I guess it really is true that I have champagne taste on an (American) beer budget.

Thursday, March 13, 2008

Button Therapy

Today I spent a wonderful afternoon in the art studio at Callanish making, of all things, buttons. Buttons with birds, cowboys, trees, even the odd swear word or two (shock, horror). I seem to be going through a self-righteous (but Tourette-like in its predictability) period of profanity use. See my gun-totin' cowboy below.

In other news, some of you have been asking about the writing group I am working with. We are half way through eight sessions, and I think it is safe to say that it is an incredible success. I continue to be inspired by the bravery, skill and unique voice of each participant. My flyer will give you a better idea of what we're doing if you're wondering what the hell I am talking about.

Lastly, we are off to Seattle on Saturday and have our actual appointment at Fred Hutchinson on Monday. Thank you to all for your emails of support and continued words of encouragement. They mean so fuckin' much to me. :)

Wednesday, March 12, 2008

A Year In Pictures

As I said in my last post, my life has certainly not been "on hold" this past year. Sometimes I get the impression that people think that cancer renders you somewhat useless. Don't get me wrong, I can strike the feeble, poster-child pose when necessary, but I consider the last year to have been very rich with life, possibility, and, of course, the usual dorkiness. Everything has changed, yet nothing has changed, if you know what I mean.

Ian and I above Palm Springs, March, 2007.

Our daily poolside margarita and a lighter shade of pale, indeed!

Cruising "The Strip" in Palm Desert.

Wind turbines west of Palm Springs...notice the apropos song playing in the background.

With Lisa, my marathon partner extraordinaire, at our fundraising event, "Chocolat in the Cove," March.

Pasta Party the night before the Vancouver Marathon. Was this before or after we sobbed through "Learning to Fly?"

At the finish line, May 7th, 2007!

Ottawa 10K race a few weeks later...I have no eyes!

Ottawa finish line...wait, what's SHE doing in my picture?

Creepy radiation mask...I had to wear this thing bolted to a table.

Girls' weekend at Point Roberts after some wonderful news in June.

Same weekend...why was this picture taken?

Getting Josefine ready to say "Hell yeah!" in July.

My colleagues at the "Light the Night Walk" for Leukemia and Lymphoma, October.

Light the Night on the seawall...I ran into my hematologist, surprise, surprise.

This year I was able to attend; last year, I was having a stem cell transplant.

Seaplane to Pender Island for Ian's "belated" birthday, October.

Scary seaplane landing!

Poet's Cove on Pender.

Ian on the dock.

Me in the woods in Connecticut, November.

Gorgeous Japanese Maple outside my window in Connecticut (at a writing retreat).

The room at Wisdom House, CT, where I led my first writing group.

Oops, accidentally driving out of Connecticut and into New York City.

In search of the Brooklyn Bridge.

Driving beside, under, around, but not over, the Brooklyn Bridge.

34th birthday, December 24th, 2007

Saturday, March 08, 2008

Is This Thing On?'s been more than a year since I've written on here, and what a year it's been. At the time of my last post, February 20th, 2007, I had just three days left of radiation and thought that, afterward, I would be well on my way to recovery and would quickly move on with my life "after" cancer. Hmm, slight change in plans. That's not to say that I didn't get on with my life. I certainly have. However, the Hodgkin's decided to stick around and keep me company, not realizing, like an inept house guest, that I'd rather be alone.

While I did recover very well from the stem cell transplant, for whatever reason, it wasn't enough to get rid of the Hodgkin's completely and in June 2007, small spots were found in my hip bone and liver. So, I began chemo again and had more radiation in October, which resolved the bone lesion. Still, this Hodgkin's remains (and I could use any number of creative metaphors here, but let's call it what it is) a relentless mother fucker.

I had no idea when I began this blog that "on through to the other side" would mean looking outside my own country for treatment options. However, whatever it takes, I am willing to do. Just please let it be in Texas and not Alabama. Not that there's anything wrong with Alabama. I'd just rather not receive treatment accompanied by dueling banjos.

Fortunately, our first stop is in Seattle. We will be going down on the 17th to see what their experts have to say. I am also receiving a second opinion from MD Anderson in Houston. By the reaction of the lymphoma "expert" here to our seeking more innovative treatment, you'd think (as I said to a friend the other day) that we were in hot pursuit of voodoo and a magic chicken. That is simply not the case. There are promising clinical trials going on in dozens of centres in the US and we feel that, just because they aren't going on in Canada, or they aren't willing to bring them here, they are most certainly worth exploring. You'd think any informed doctor would think the same thing.