Friday, October 31, 2008
Tuesday, October 21, 2008
Well, since we are now in a holding pattern (I started "maintenance" chemo yesterday, a drug called Lomustine) until I can begin the SGN 35 trial, I thought I would take the opportunity to write about my hair. Fascinating, I know.
Its falling out, being bald, and re-growth have certainly been the least of my worries with this whole cancer gig, but I know for many it can be traumatic. I have heard from friends and family, too, who had never seen me with short hair in my 34 years, that seeing my hair grow back has been interesting in a Chia Pet kind of way.
Initially, losing my hair, especially because it was really long, felt quite icky; there just seemed to be so much of it because the strands were so long. As soon as this started happening, I cut off my ponytail and realized how much I liked having a bob (I wish I'd found this out a decade earlier). However, this didn't last long as my hair was still noticeably thinning, so my very nervous hairdresser chopped it all off without taking out an eye. A few days later, my husband gave me the final "Sinead" buzz cut with an electric razor.
My first look in the mirror was a tough one, not because of my hair being gone, but because I felt like my privacy regarding having what was considered to be a "dreaded" illness was now obvious and that this "evidence" would now enter a room before I did. However, once I was over the initial shock, I found being bald very empowering. There was no more long, blond hair to hide behind (not that I was aware that I was even hiding) and I felt pretty kick-ass, if I do say so myself. People know you mean business if you are a bald female, regardless of what they think the reason may be.
I have since come to regard a bald head, particularly on a woman, as utterly beautiful and natural. It enables us to see another's face, bright eyes and lines of expression with so much more clarity. When I see friends who are undergoing treatment that causes hair loss, I am overwhelmed by the inherent beauty of each of their faces and am often struck at the actual superfluousness of hair. When I didn't have any, I started to find it weird looking and unnecessary on people who did. Funny and wonderful how the mind adapts.
What was actually more difficult was when my hair started to grow back in an unfamiliar colour and texture. Having always had pin-straight, long blond hair, tight, curly brown hair was a bit of a shocker for me. It was hard to identify with and, as I had experienced so many changes, I really just wanted my old familiar hair back. I was told that the chemo curls were temporary and I gave them a good ten months before taking them to slaughter. They simply would not straighten-out or weigh-down, and in the words of one of my dear friends, I "looked like Ronald McDonald," just without the big red shoes.
So, off they went, nearly a year of hair growth falling to the stylist's floor, but low-and-behold, after that cut, my hair started to grow in much straighter and a bit lighter. Now it's almost in a bob; I'm just waiting for the remainder of the Cocker Spaniel ears to grow out. In the last few weeks, I've also been able to get it into a rather precarious pony tail with the help of half-a-dozen bobby pins.
In a nut shell, I'm happy to have hair, but will certainly not go to pieces if I have to lose it again (which doesn't seem to be the case for the foreseeable future). However, if I do, I will look forward to the unfettered beauty and confidence that I see, love and appreciate in the faces of my brave, currently-bald friends, regardless of my undeniably large frontal lobe.
Wednesday, October 15, 2008
I Wasn't Kidding About the Waffles...
Breakfast in Texas
We're back. It's taken me a while to write as I have had a pretty sore back after the bone marrow biopsies I had in Houston and couldn't sit down for long at the computer. Perhaps, if I would finally opt for a comfortable and ergonomically-correct desk chair instead of a nice-looking one, I would have been here sooner too.
Things went well down south. It was an exhausting trip as I had a full-work up of tests. My final scan was an "eyes to thighs" CT, which included the added surprise of having rectal barrium. I usually feign nausea when I have to drink this stuff; after all, it seems silly that everyone, regardless of body weight (including the 300+ pound man across from me in the waiting room), gets the same amount, so I figure I'm good to go if I can get a litre down (and that's about as much as my gag reflex will allow). Unfortunately, I fooled no one and soon found out I would be getting more of this thick, pasty sludge through another orifice. Horror of horrors. I didn't bother to ask what flavor it was this time.
In between testing, we tried to see as much of Houston as we could, starting first with a trip to Target, or Targét, as we like to call it in Canada.
Not just Target, but SUPER Target!
I was also lucky enough to see a wonderful friend, Baranna, who I met last year while I was in Connecticut, and it was so nice to connect again. We had quite an adventure west of the city to a quaint little town called Round Top on the weekend.
My lovely (and most hospitable) Texan friend
Throughout the week, our driving and lack of direction was somewhat mitigated by the fact that we had out-of-state plates on our rental car, so not every gesture was "the finger" when we turned into the wrong lane. We got a few thumbs up from fellow Oklahomans too.
The car also came with these two thugs
On the last day of our stay, we got the treatment recommendations from Dr. Younes. We had no idea what this would entail and whether we may, indeed, be staying in Houston to start a trial right away. However, that was not the case. The trial he considers most suitable for me at this time is SGN 35, a drug we are familiar with that belongs to a class of agents known as anti-CD 30 antibodies. The drug works by binding to receptors on target (cancer) cells then undergoes rapid "internalization" and releases active drug from the antibody carrier inside the cells.
What was unclear, however, was how quickly I could get on this trial if I wanted to do it in Houston. Getting started right away while I qualify and without the risk of delay was certainly an important consideration; however, we were unable to get a definitive start date. This is often the case with clinical trials, particularly when they are in stage I, as there can be limited access to the drug itself, more urgent cases and other administrative issues. So, we would have been staying with very little chance or guarantee of getting on the trial a few weeks later.
As all pre-screening needs to be within 30 days of the start of the trial, if I didn't get a place in that intake, I would have to have a full-work-up again, still with no guarantee of a spot in mid-November. As a Canadian receiving treatment in the U.S., I am basically in the same position as an uninsured American. All expenses are out-of-pocket and it would theoretically be possible for us to spend more than $50 000 doing all the pre-screening and still perhaps not get a spot in either of these two intakes.
It is not a pleasant feeling to have to make such decisions based on cost, and, really, I am not. I am very, very lucky to have an incredible family who assures me we will do whatever it takes, whatever I decide. Fortunately, we also found out in Texas that the SGN trial is expected to open in Vancouver in phase II in the new year.
So, as soon as we came back, we were on the phone to see if I could get access to the drug up here sooner through an Expanded or Compassionate Access Program. While it is not possible at this time, through due diligence (and holding him hostage in his office for an hour and a half), we seem to have precipitated a major shift in the doctor I have had so much difficulty with here in the past (the one who saw no point in my exploring clinical trials). Fingers crossed, he seems to now understand why I would like to take a stab at the whole survival thing.
While it is a little scary taking this leap of faith and going back to "maintenance" chemo to hopefully hold the disease until the Vancouver start date, I can't express how relieved I would be to be able to stay at home to do the trial. I don't want to be away from my family and friends anymore and we have so much support here; Ian would also be able to continue working. Plan B might be Seattle if they get the trial open faster, but for so many reasons, we'd rather stay here. Still, who knows, stranger things have happened.
So, that's the view from here on this fine fall day (despite Stephen Harper still being Prime Minister this morning).