So yesterday I wrote about my good news in that my clinical trial is shrinking my mets quite dramatically. You’d think that would be really exciting news, right? It was – for the first few days.
Then my mind went to the mixture of sucky and ambiguous news that I’ve been receiving for the past few years. I had been in so much limbo as to “are things moving in the right or wrong direction?” that now that I have evidence that things ARE moving in the right direction, I’m still having a hard time getting out of my old mindset.
And there’s the simple fact that with metastatic disease, things move in the right direction until they don’t. How many times have I heard of fellow metathrivers finally reaching the long-anticipated status of No Evidence of Active Disease (NEAD) only to have serious progression (or be dead) within 3-6 months?
Then there’s also the issue that I know too much. I had genomic testing done years ago and I know I have a number of mutations that can make my disease less responsive to the treatment we already have, but researchers haven’t puzzled out what that means. And I’ve been all over the country and even beyond (i.e. ABC Lisbon 2017) asking the world’s top scientists and researchers “what does this report mean? What do these mutations mean?” Since there’s so much we still don’t know about what makes my cancer act the way it does, how can I really believe that this particular drug is the thing that will get me NEAD for years?
And since this mess began, the fall has hurt less when I’ve been braced for it. My Stage IIIc diagnosis at the end of 2014 knocked the wind out of me. I didn’t expect the lump to be cancer in the first place and for it to be cancer AND advanced as it was shook me so much. As someone who spent 2+ years as a health educator in an underserved part of the world, the diagnosis didn’t just change my whole life but hit my in the gut as a moral failing. How could I have let this happen?
In the 18 months I was going through treatment after my initial diagnosis, I cried lots, blamed myself, moved past blaming myself (mostly), read about metastatic disease, panicked about metastatic disease, went through periods of denial about metastatic disease and eventually made peace with the likelihood that I would someday have metastatic disease myself. So when it did come for me, the fall hurt less. It still hurt,
I still went through a period of denial, but I took it better than the initial diagnosis.
I guess I’m in that place right now – cautiously happy but not TOO hopeful because I know how quickly things can change. My analogy about falling off the cliff makes me remember something Beth Caldwell wrote. I wouldn’t say I’m still hanging out at the base of the cliff but I’m not at the top either.
This also makes me remember when I was in Peace Corps and I traveled to Cape Town with my cousin Jesse. We climbed up Table Mountain and he wanted to motor up to the top. But it was too much climbing all at once for me and I had to stop and rest. I remember at one point I insisted we stop so I could drink some water and enjoy the view. So we did. And that’s where I am right now, partly up Table Mountain, not wanting to climb back down and too cynical to think about climbing further up. It’s not comfortable, I didn’t have time to grab a tent or sleeping bags and the ground is hard and sticks are poking me in the back. But I have a great view and enough water and snacks to get me through for awhile so I will make the best of it because I don’t have any other choice.
Hanging out halfway up Table Mountain