To everyone who has offered to help me argue for compassionate-care access to a MEK-inhibitor, thank you. Less than 24 hours after my last post, a friend contacted someone she knows at Novartis on my behalf and he, in turn, is contacting Novartis Canada. Maybe this will be an unusually uncomplicated situation where the drug company generously grants me access to the drug without too much agitation. But if I need to agitate, it’s nice to know I have a lot of you willing to use your voices and work your connections.
This is a strange situation to be in. I really didn’t think I would run out of treatment options so soon, especially not at a time when I feel relatively well (other than the side effects of the ascites, or the side effects of having the ascites drained — I’m in a considerable amount of pain right now as my muscles and organs find their ways back home, but that’s expected and that’s also what narcotics are for). A lot of people have told me how brave I am for making the decision to stop treatment, but I don’t feel ownership of this decision; in many ways, the decision was made for me by a simple lack of options. I think I always thought that when I stopped treatment, it would be a decision I’d make after deciding the treatment was worse than the disease, after side effects became too much to tolerate. But I’m physically capable of tolerating more treatment right now, there just isn’t any treatment (easily) available to me. And I don’t count more cytotoxic chemotherapy — which has a poor performance record in treating low-grade ovarian cancer and, more importantly, a poor performance record in treating my low-grade ovarian cancer — as a viable treatment option.
I feel a bit lost.
I also feel sad, but mostly I feel angry — angry that there aren’t more options for people like me who run out of options long before they should, angry that the research machine doesn’t operate in such a way that individual doctors have more of a say in how to treat individual patients who don’t fit the mold of typical patient or typical research subject. I’m angry that I feel like I have to grovel and beg for some pills that maybe, just for awhile, could give me some stability in my health. I’m angry that so much of my head space is taken up by thinking about cancer, leaving little room for me to think or care about anything else. But I also feel blessed and privileged to have an extended community of people who are willing to help me through this, in various ways, however they can.