As I mentioned in my last post, it appears that once you drop out of the realm of standard cancer treatments, the system isn’t designed to support you quite in the same way. I don’t think anyone knows exactly what to do with me. And it’s extremely unnerving.
This predicament is many-layered and messy, and it has occupied my time and energy for the last several days, but I’m not going to go into a lot of detail for two reasons:
1) I tried to write this post detailing exactly what happened (or didn’t) and it ended up being about 5 million words long, and
2) I don’t understand exactly what happened (or didn’t) and I don’t want to write anything unfair or untrue.
Suffice to say that as the fog of our initial shock lifted, we surveyed my situation and found that it was a total crash site. We needed a plan — knowing what the next steps would be and who was leading us through them was the key to getting my fear, despair and uncertainty under control. But we didn’t have a plan. We had a piece of paper with a web address (clinicaltrials.gov) and some search parameters written on it, but no real understanding of what comes next.
Admittedly, we were in shock when we heard the news that my cancer does not respond to standard treatments so it’s possible we were given information that just didn’t register, but we left the clinic without really knowing what to do and the result has been confusion, insecurity and a (possibly misplaced) sense of abandonment. And of course, a little rage.
However, we’ve since made some progress identifying clinical trials and other options, mostly by communicating with my oncologist and enlisting the help of friends, my hospital’s excellent social worker and my very caring and capable family doctor. I’m blessed with incredibly supportive people in my life who are good at networking and handy with the Internet. They’ve been researching, calling doctors and other people who might be able to help, and generally just sleuthing around to try to find promising programs and clinical trials that I might be eligible for. I can’t emphasize enough the importance of having people to advocate on your behalf when your head is spinning and you’re lurching unsteadily between terror, rage and optimism like an emotional bride of Frankenstein on newly cobbled-together legs.
Meanwhile I’ve made some changes where I can – every little thing counts and I decided that if there was going to be a pause in my treatment I may as well use it to detox from all the chemo and try to rebuild my immune system. Actually, my mother decided that and I agreed since it’s widely acknowledged that there’s no point in disagreeing with my mother when she has decided something. So I now take about three handfuls of vitamins and supplements a day and have finally and begrudgingly cut back on meat (fois gras is technically poultry,) alcohol (champagne is technically bottled happiness,) and sugar (I cannot be expected to give up chocolate entirely.)
Plus my friend Todd is a nutrition-fascist with a juicer and a lot of experience with cancer diets, so I spend my days knocking back his crazy cayenne- and tumeric-spiced leafy green/dark berry cancer-killing concoctions. They’re actually not as bad as they sound, and no, I have not spiked them with vodka. Yet.
In short, things are moving more or less in the direction of action, though I wouldn’t say I have an actual plan since we haven’t yet identified the clinical trial for which I’m going to apply.
I do have my eye on one promising experimental drug in particular, but there are no trials for it in Toronto, and while we’ve always said that we would find a way to go wherever the right treatment is, right at this minute I have no idea how we would manage to do that, logistically or financially. But I’m trying to just think about things one step at a time, and today’s step is to see what there might be for me in Toronto. This afternoon we’re meeting with the head of clinical trials at my affiliate hospital to see if we can match one of their current studies to my case. I’m somewhat optimistic – after all it is one of the top five cancer centres in the world – but my approach is to find the clinical trial that has the best chance of pushing this cancer back from whence it came, not to try to find the closest match of the most conveniently located trials available.
So once we have an idea of the most promising studies, wherever they may be, we need an informed review of them all and a fairly quick decision. Ideally I want to know what treatment I’m starting (and when and where) by the end of this week. That might sound like a tight turn-around but I’ve got a mean mother of a metastasis taking up a little more real estate in my body every single day and I need to do something about it before the whole neighbourhood goes ghetto. My rib continues to hurt, my cough is much worse, and my breathing is hampered by the pressure of the lymph nodes on my bronchial passageway. This cancer has become symptomatic – I can feel its progress – and quite apart from what that’s doing to me psychologically, it’s wearing me out physically.
I know I need rest and peace, but I won’t be getting either until I have a plan.