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

Wednesday, April 23, 2008

Endings and Beginnings

Nous sommes arrivés! This last week has certainly been a whirlwind, but we managed to get everything done and are now relaxing (well, somewhat) in Montreal. I had an incredible few days before I left that included visits with family and friends, as well as a great morning with the Leukemia & Lymphoma Society's Team in Training group last Sunday. It was with Team in Training that I did the Vancouver Marathon last May.

That's me in the middle of the back row, between coaches Lisa and Angela

My dear friend, Lisa, who fundraised and trained every step of the way with me last year is coaching this season and I have had the privilege of being an honorary team member.

Here she is with some of her team members doing a short (18km, was it?) training session.

During this current season, I have received the most incredible emails of support and encouragement from the Team and it is really something to know that there are people taking time out of their busy lives to raise money and awareness for blood cancers. Speaking of which, Lisa, who, needless to say, is incredible (but also a bit of a nutter), has now signed herself up for a Team in Training century ride in Honolulu. As soon as she gets her fundraising page up and running, I will be posting it here so we can help her to meet her goal by September. What a woman.

Another highlight of last week was the final session of the eight week writing series I've been co-facilitating at Callanish (the extraordinary non-profit I've been involved with, in other ways, for the last two years). The group completed so many stunning pieces over the course of the series that it seemed appropriate to honour this work in some way. While there were a few technical glitches (that had us thinking Kinko's would do just fine), with the support of my friend and fellow writer, Allison, we were able to publish a gorgeous book showcasing the work of the first-ever writing group at Callanish.

If I hadn't been editing into the wee hours of the morning, I might have caught that run-on sentence in the second paragraph!

Of course, celebration aside, there were all sorts of other details to take care of before we left...Ian had to wrap things up at his school and deliver a final presentation at SFU for his Masters on Saturday. Also, for a brief moment in time, he was in possession of a pair of Rush tickets (his favorite band, god knows why...) that his loving wife surprised him with before she realized they would be relocating to Montreal prior to the show. Quel domage! No glimpses of Getty Lee in leather pants for me.

Ian lamenting the loss...

We also had to sort out arrangements for Miles (who's gone to his mom's temporarily) and Finn (who's gone to my mom's, also temporarily). Here I am with Finn after I told him the bad news. As you can see, he's devastated.

Finally, we made it to the airport on Tuesday morning. Luckily, you can't see all our luggage.

Now in Montreal, we walked around downtown and at McGill before going up to the hospital on Wednesday.

This is the very scary-looking Royal Victoria Hospital where I am receiving the clinical trial. I hope Stephen King isn't my doctor. Oh well, who cares what it looks like, as long as it works.

Thursday, April 17, 2008

Je me déplace à Montréal!

That's right, we're moving to Montréal - this Tuesday! Nothing like 6 days notice to move across the country. We're flying out with as much luggage as West Jet will allow us to bring and will be staying at a hotel (thanks, Jenny) until we can move into a furnished place at the end of the month (which we will find when we get there). Now I'm wishing I hadn't been such a shit in Madame Pekovich's class during high school. My French would certainly be better. Merde!

Ian will be going with me (trust me, he's very upset to be getting out of school 7 weeks early) and my parents will come out soon and/or I will be back from time to time, in between weekly follow-ups at McGill. I am very grateful to actually know someone who is going to be in the trial with me too. We serendipitously met at the chemo clinic a few months ago and she will be flying out next Tuesday as well. It is amazing to have met someone who knows exactly what I'm going through and that we will be heading into this unchartered territory together.

The drug I will be receiving is called MGCD 0103 and is part of a new class of cancer drugs called HDAC inhibitors. Having shown promise particularly among the small portion of patients with Hodgkin's that does not respond to standard treatment, it attacks cancer cells differently than standard chemo. It kills the cancer cells directly and may actually boost the immune cells to make them better at fighting the tumour cells (just in case you were wondering).

Unlike other cancers, with Hodgkin's, the primary cancer cells are less than one percent of the mass or tumour. These cells (evil Reed-Sternberg cells) originate from premature B cells that fail to develop into normal, mature functioning immune cells. Imbeciles! The rest of the tumour mass is made up of reactive inflammatory cells, which is a normal immune response to any injury, infection or disease.

In theory, you would expect these immune cells to kill the tumour. But they can’t because the little buggers are actually collaborating with the cancer cells, providing support by secreting factors that help the cancer to grow. Stupid wankers! MGCD0103 works by influencing the reactive immune cells either by turning them into killer cells, or by simply getting rid of them. Hey, hey. Ho, ho. Reed-Sternberg has got to go.

How long this will take is anybody's guess, but if all goes as planned, I will be in the trial for one year. So, for these first few weeks while we get sorted, email will be the best way to get hold of me, until we have a land line in our new place. Also, I've opened up the "Comment" option (seen at the bottom of each post) on here if you would like to drop by and teach me more swear words in French.

In the meantime, nous préparons à la bataille!

Tuesday, April 08, 2008

Rising and Shining

Good morning! As I write this I am enjoying my great big morning glass of Life Force Power-Ade. It seems all the juice and my increased vegetable intake are really doing what they promised to do, giving me a well-needed boost of energy. Since the transplant, and being on continuous chemo, the one thing that has been a challenge is regaining my energy; although, I'll preface that by saying, on average, I am as busy now as I ever was with appointments, writing, research, etc. However, I can't remember the last time I got up this early, willingly, and look what was in my breakfast...

Yep, that's kale, broccoli and a whole shwack of carrots. It's certainly the first time I've taken a picture of my breakfast, but I am just so enamored with the beautiful bounty that is going into my body everyday to help it heal.

Another reason I am feeling so good these days is undoubtedly due to the writing group I am co-facilitating at the Callanish Society. Yesterday, on the way there, I was practically bursting as I was driving - not because I had to go to the bathroom, but because I am so happy to be participating in this kind of work with others who are equally as inspired by it. Sitting amongst over a dozen people who share an innate passion for words and having the time to really listen to each other as we consider, grapple and make sense of what it means to be human...well, there are few things that compare, in my book.

This is one of my pieces from yesterday...

Digesting the sweet juice of spirit
sweating it through the pores
The organs evolve

Do as you wish
But we will grow new again
again again again

Limbs and legs
planted firmly as trunks
sinking deep into earth
Spinning earth
a dervish among weeds


reels her
round and round
Dervish again
whirling whirling whirling

Unimaginable until now
this moment,
earth spinning dervish
in the palm of my hand

It is so much fun to be writing more than magnetic poetry on my refrigerator. I also have three major projects in the works, and just like when I read (I think I have about eight books going currently), I am working on too many things at once which means that it will probably take me four times as long to finish any one of them, but that's just how my brain works.

I am in the process of setting up a non-profit (more on that soon) and I am working on two books (one novel and the other, a patient advocacy handbook that many of you know about), and, I am also now one of those people who can smugly say, "I am working on my screenplay."

"My screenplay" is a big deal for me as it is something I have always wanted to do, yet have never had an idea that I felt I could sustain for long enough to write what was required to go along with the action and dialogue. However, I now have an idea firmly planted and I am very excited about the potential of the characters and their inherent conflict.

Whew, with so much going on in the brain these days, I haven't even mentioned my other good news. Last Tuesday, I had a CT from my neck to pelvis and the results came back as "stable." I was growing increasingly concerned over some recurring pain in my hip area and was trying very hard not to "catastrophise," so it was wonderful to not see any new proliferation of the disease.

We are also making progress with McGill. My records are being reviewed there and we should know this week if I qualify for their clinical trial of a therapy called MGCD 0103. Instead of donning a cowboy hat and heading to Texas, I may be saddled up with a baguette (or Ian) en route to Montreal for another PET scan in the coming weeks, as they like to use their own machines if they are going to be making comparisons in the future.

Speaking of radioactivity, many of you know that last year, after returning from the Prevent Cancer Now conference in Ottawa, I became Chair of the Canadian Campaign for Safe Cosmetics. Unfortunately, I had to step down due to a rather full plate, but I am still hell bent on getting rid of the toxins lurking in the homes of the people I love (and everyone for that matter). There is virtually nothing in your home that can't be cleaned with a little vinegar and water or baking soda. Granted, your house may smell like a bag of chips for awhile, but your body (and the earth) will thank you. Here is a concise article from the Health Action Network Society newsletter that illustrates the importance of making the switch:

In terms of cosmetics, a good rule of thumb is, if you can't eat it, don't put it on your face or in your hair. Remember Clairol's Herbal Essence campaign..."a totally organic experience?" Well, not exactly. You can check all the personal care products you use at: which is a fantastic site compiled by the Environmental Working Group in the U.S. Remember, no parabens - butylparaben, methylparaben, sodium laurel sulfates or other unpronouncables.

Also, if your products, perfume or otherwise, smell nice, they are most likely made with synthetic fragrances that are toxic to the nervous and respiratory systems. Unless it is a naturally-distilled essential oil, it is likely to cause adverse effects and a loophole in our current legislation allows the noxious chemicals used to make things smell "good" to be disguised as "fragrance" or "parfum." Who wants that?

OK, I'll stop ranting now. But if I wreak of vinegar the next time you see me, at least you'll know why.