#TURN IT UP A LITTLE BIT LOUDER HOW TO#

ItвЂ™s a low-grade cancer that came back as high-grade but which still acts like low-grade, which means chemo is generally going to be a bust. My cancer just doesnвЂ™t respond well to chemo. My disease has moderately progressed despite the poison weвЂ™ve been pouring on it.

I saw my oncologist today, and as expected, weekly Taxol was doing fuck-all. ItвЂ™s important to remember that this is not a war because I donвЂ™t want the decision I made today to be construed as вЂњgiving up.вЂќ But itвЂ™s not a war itвЂ™s a biological process gone awry. If this were a war, I would have raised the white flag long ago. IвЂ™m not engaged in warfare, IвЂ™m living my life with an illness. I take offense to the idea that I am вЂњbattlingвЂќ cancer (sorry, Dad, I know you have talked about me fighting cancer, but I just donвЂ™t see it that way). 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. IвЂ™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. IвЂ™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.

#TURN IT UP A LITTLE BIT LOUDER HOW TO#

I also feel sad, but mostly I feel angry - angry that there arenвЂ™t more options for people like me who run out of options long before they should, angry that the research machine doesnвЂ™t operate in such a way that individual doctors have more of a say in how to treat individual patients who donвЂ™t fit the mold of typical patient or typical research subject. And I donвЂ™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. But IвЂ™m physically capable of tolerating more treatment right now, there just isnвЂ™t any treatment (easily) available to me. I think I always thought that when I stopped treatment, it would be a decision IвЂ™d make after deciding the treatment was worse than the disease, after side effects became too much to tolerate. A lot of people have told me how brave I am for making the decision to stop treatment, but I donвЂ™t feel ownership of this decision in many ways, the decision was made for me by a simple lack of options. I really didnвЂ™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 - IвЂ™m in a considerable amount of pain right now as my muscles and organs find their ways back home, but thatвЂ™s expected and thatвЂ™s also what narcotics are for). But if I need to agitate, itвЂ™s nice to know I have a lot of you willing to use your voices and work your connections. Maybe this will be an unusually uncomplicated situation where the drug company generously grants me access to the drug without too much agitation. 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.

To everyone who has offered to help me argue for compassionate-care access to a MEK-inhibitor, thank you.

Turn it up a little bit louder