Bump in the road
The last few weeks have had some of the lowest lows and highest highs I’ve experienced in awhile. I went from ‘huh my back hurts’ to ‘looks like you’ve had a progression’ to ‘you’re too healthy from clinical trial’ to ‘let’s see if these pills work for a bit.’
I also got on a plane for the first time in three years, rocked a sequin dress at my first Indian wedding, met my cooking idol/future close friend, Alison Roman, saw a Broadway show, soaked in swanky pools, learned a dance routine to my fave Beyonce song, and tried to enjoy life in the midst of significant anxiety. Oh! And despite all that socialization, did NOT get COVID. I’m still being cautious but
Living with MBC often means a new understanding of the word “lucky.” (Maybe I wrote about this before but it bears repeating/I’m too lazy to look back at my old posts). I was lucky at initial diagnosis that I didn’t have cancer in my lymph nodes, that the cancer was hormone positive, that my tumor was on the small side, that I found it ‘early.’ Last year when I broke my leg, I was lucky because the cancer was confined to one area, only in my bones, and still hormone positive. Now that I’ve had a progression, I’m lucky because even though the disease is in a new area, it is still bone-only, and the lesions themselves are so small they don’t even register on the PET scan. If I had not asked for the MRI due to pain we now think was actually unrelated to cancer, I would likely still be on my same meds, still thinking I’m NED. We’re changing my meds because even the slightest activity in a new area is cause for concern. My oncologist thinks I’m lucky we did the MRI because if we didn’t, and waited another three months to see what was going on, we could be in for a world of hurt.
So, we move forward. Well, first the request for new meds gets denied by insurance, then appealed, then approved — THEN we move forward. What a health care system we have here in the United States.
I’m also committed to working on myself a bit more as I navigate new meds. I enrolled in an online program focused on positive psychology and I’m trying to figure out how to best set boundaries with work and reduce my overall stress. I’d love to reduce my hours but such a reduction could mean losing my health insurance, which is non-negotiable. I’m fortunate to have good insurance and a good support system to help me tackle the administrative nightmare that is health insurance in America. MSK makes the whole process simple and it is such a relief. And when I do get a big bill, I have the resources to take care of it. So I’m looking at how do I enjoy my life (and to me, that does mean working as little as possible) while still being able to take care of my health. I don’t have the answers yet or a plan forward at this moment. But I hope to soon. Till then, I’m going to try and appreciate the blessings I’ve been given.
