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

Friday, January 30, 2009

How's It Going?

Good question.

Let's see. I can't believe it's been five months since I came back from Montreal after the MGCD stopped working. When I arrived home, I was in pretty rough shape. Not in a near-death sort of way (in my opinion, anyway), but I was very run down - under weight, over anxious, sleep deprived and extremely itchy.

Thankfully, I can say I am back to a normal weight (that part of recuperating was fun) and I am definitely less anxious. However, I am still fairly sleep deprived due to the itching (which can be a symptom of Hodgkin's or may be related to hormonal or other issues). What frustrates me most are frequent decreases in my stamina. I often feel discouraged by the fact that, not that long ago, I had enough strength, even with cancer, to complete a marathon, yet these past few weeks, I feel winded walking up my driveway.

I know I should cut myself some slack. I have been chronically anemic since I was first diagnosed. My hemoglobin hovers around the 83-95 range and has only been over 100 a few times in the past few years. That, in and of itself, renders some people bed ridden, so I count myself lucky to not have had that happen. Still, I don't like to feel like I have been "benched," so to speak, while everyone else is out there playing.

So, what can I do about it? I am thinking out loud here so bear with me. Well, more yoga for one. I love yoga and we have a beautiful studio with great teachers just up the street. I've been thinking about a little tai chi too. I love the beauty and fluidity of people doing it together in a group, and my mom practices with a good friend of ours (hi Roz) who is very skilled.

I also have it in the back of my head that I would like to do the Vancouver Sun Run again in April. Whether walking or running or a combo of both, I would love to work toward that goal and complete it with a bunch of ya'll for moral support (Lisa, are you with me?) My treadmill is sitting right here beside me with a jacket draped over it. Hmm, I guess it's time to dust her off. Maybe it would help to call this endeavor "Project Sun Run Meets the Afternoon Martini." See you on the patio at English Bay.

In addition to these goals, I will continue to shoot for the moon on my mini tramp and juice the hell out of all these fruits and veggies we keep buying. In February, I will also finally be seeing an endocrinologist who specializes in patients who've had extensive chemo and/or transplantation, and I hope he will have some good suggestions.

Next week, I'm having my first B12 injection to see if it can help with the Raynaud's Syndrome I have in my hands and with some other long-term side effects of the treatment I've recieved. The Raynaud's is probably caused by all the chemotherapy, possibly the bleomycin, and causes my fingers to go white, numb and weak when they are cold.

Basically, the only thing that brings relief is getting them warm again which has been difficult in this cooler weather despite my always wearing gloves. Wikipedia recommends if the Raynaud's is triggered by exposure in a cold environment and no warm water is available to "place the affected digits in a warm body cavity - arm pit, crotch, or even in the mouth."

Good grief, let's hope it doesn't come to that.

Wednesday, January 21, 2009

We're Off to a Good Start

Well, exactly one day after being in office, Obama, I mean SGN-35, is taking action. Today, Seattle Genetics (the manufacturer of the trial drug I have been waiting for) announced that it has reached agreement with the FDA to begin opening the phase II trial at centres in the U.S. They will begin the first arm with 100 patients with relapsed or refractory Hodgkin's who have had autologous stem cell transplants (that's me).

To quote their president and CEO (because it makes me happy): "The data thus far from both of our phase I trials of SGN-35 have exceeded our expectations, including multiple complete and partial responses at well-tolerated doses, suggesting that this agent may address a substantial unmet medical need in patients with relapsed or refractory Hodgkin's Lymphoma."

This could be the one we've been waiting for.

Tuesday, January 20, 2009

An Auspicious Day...

Hope seems palpable today as the 44th president of the United States is sworn in, and, wanting to soak up some of that hope, I thought it might be useful for me to visualize Hodgkin's Lymphoma as George Bush and the SGN 35 trial as Barack Obama.

Like Bush, the Hodgkin's has been nefarious and without conscience; I picture it with crossed eyes and an IQ the size of dryer lint. Obama, on the other hand, has inspired the hope of millions. So, here's to him and SGN 35 fulfilling their campaign promises.

Aah, remember when...

Personally, I don't think that this dumb ass ever fooled anyone, and today - finally - he is gone, gone, gone! This means I can officially end my six-year in-house protest of the Bush administration. I took the photo below on February 15, 2003 at the anti-war demonstration in Vancouver, one of more than 800 cities to participate in the largest protest in human history.

Saddened and enraged over the Bush administration's declaration of war on Iraq, I did my very meager part by vowing to keep this photo hung on our wall for the duration of Bush's presidency. I may have thought twice if I knew he was going to be re-elected.

Anyway, the funny thing about this photo is that the original version actually read, "A village in Texas has lost it's idiot." However, as I appreciated the sentiment (and being somewhat anal rententive), I photoshopped the sign holder's grammar mistake so that I wouldn't have a linguistic meltdown every time I walked by it.

Regardless, today is the day George and his friend Hodge pack their bags and head back to the village. Later, losers!

Sorry Texas, but it had to be done.

Monday, January 12, 2009

Juice Mama

So, I decided to ring in the new year with a little juice fast to detox from some of the sugar that inevitably crept into my diet over Christmas. I was going to do this for 48 hours (two days), and then for longer the following week and see how I felt. So, last Monday morning, I whipped up a delicious lemon, lime and apple brew. By lunch time, I was feeling rather hungry, so I made a smoothie combining silken tofu, avocado and soy milk topped with pumpkin seeds.

The avocado smoothie was not bad tasting, just weird, sort of like drinking/eating a crunchy, savory Shamrock shake (do they still make those?) Then, despite all its protein, I was absolutely ravenous by dinner time. As the dog was looking pretty good at this point, I decided I better eat something solid, so, nine hours after beginning my 48-hour detox, I broke down and "hoovered" a warm spinach salad and an Annie's organic pot pie. I know feeling hungry is part of any fast, but I don't cope well when my stomach gives me attitude. I must get this from my mom who doesn't like to be more than half-an-hour away from a carbohydrate.

The next day I was at Callanish and they had chocolate-chip cookies, so, well, you know how the rest of the story goes... Anyway, my inability to go more than several hours without solid food has not stopped the juicing action. As you may recall, we got very into it last year when we bought our industrial-size Breville (the one that could survive the apocalypse if necessary). For months, we were juicing all kinds of things and even hauled it to Montreal (sorry WestJet) and juiced in our hotel room (sorry Delta...never did find that beet). However, when I was on the MGCD trial and having all kinds of G.I/nausea/vomiting issues, I developed an aversion to drinking green sludge.

It took me months to recoup my tolerance for juicing, which was frustrating because I loved all the fruits and vegetables I was able to get in my diet. However, by starting out again making more fruit-based juices of different colours, I'm back at it. This morning's concoction was a combination of beets, grapefruit and lime.

Lately, I have also been bouncing on my 1980s mini-tramp that I bought off of Craigslist last year (not to relive my youth; it is supposed to stimulate the lymphatic system). The only problem is that we don't really have anywhere to put it so it ends up in the middle of our living room. It has now become impossible for me to enter the room without launching off of it Super[Wo]man style onto the couch.

Must be the Underoos.

Monday, January 05, 2009

A Mixed Bag

First of all, happy new year. My new mantra for 2009 is:

35 and still alive!

If I were overwhelmed by statistics, I would consider this quite an accomplishment. However, I believe that we are all living on borrowed time. That's not to say that learning of my "predicted" life expectancy over a year-and-a-half ago wasn't difficult. It actually worked its way into a piece of fiction I am still working on:

Now I have the number. The number of months they expect me to survive. If nothing else, I had managed to dodge it until now. But there it was and I could not shake the slender curve of that single digit from my mind.

Hopefully, now that I've passed said expiry date, I won't "go bad," but, you never know. There's still time to go Britney.

Anyway, speaking of writing, we are gearing up to begin our next writing series at Callanish (we have a wait list!) and I am hoping to bring a workshop to the North Shore in the spring. Now I just need to figure out what the hell I meant by "inner landscapes"...

I am also really excited to be attending a three-day workshop next week with John Fox, author of Poetic Medicine.

Last, but not least, my PET scan results (just thought I'd make you read through all that other stuff first)...

They were mixed but OK. No new areas of disease, but some reduction and progression in the existing ones. It wouldn't have been realistic to think that the single-agent chemo I'm on would make a big dent, but I always kind of hope I'll get the results and they'll say "spontaneous remission." As I said to my mom after I read the report, it's like studying really hard for an exam and never being able to get an A.

Maybe I need a tutor.