Progression was not the news we were hoping for this week, but then the unexpected paths that life has brought us has been par for the course over the last few years. Expecting the unexpected is a difficult adjustment to make and clearly I’m not quite there yet. Two (2) years of stability after the initial shock of the diagnosis had, in many ways, lulled me into expecting that status quo to last.
Last Friday was my sixth PET scan.
We heard nothing over the weekend, which was not a good sign since my medical oncologist has been extremely consistent about calling me over the weekend after a scan to give me the results.
Monday afternoon, I met with my medical oncologist, Dr. Grace Wang, at the Miami Cancer Institute. She delivered the news with a matter of fact compassion that we’ve grown to expect from her. Not only did we discuss the “mild progression” that the PET scan showed, but also her plan. She’d been busy, consulting with other doctors and reviewing the details of my genomic and genetic markers and mutations, yet she started the conversation by asking what I wanted to do, if there was a trial I wanted to pursue. She’d also presented my case to a molecular tumor board, gleaning more perspectives.
Bottom line, I have two new lesions, one in my spine and one in my pelvis. The rest of my bone mets are still inactive and dead or still dying. It is definitely a noted silver lining that instead of dealing with hundreds and hundreds of mets all throughout my skeleton, we are only dealing with two (2).
Yet, those two are two too many.
I’ve learned well over the last two years that medical oncology is both science and art. Yes, the medication is based on science and research. Understanding the body, its processes and the cells, the cancer cells and otherwise, is important. However, there is still so much that we don’t yet know. So, when the cancer figures out how to get around medication that was designed to keep it in check, then the scientist must also embrace the art of anticipating the next move the cancer cells might take.
My medical oncologist is both scientist and artist.
I’m so thankful for that. Truly.
Even though the progression is mild, the fact that my tumor markers have been rising over the last few months, communicates that the mild progression we are seeing right now is likely the harbinger of a major progression. In light of this development, we are in the process of changing my medication from Ibrance and Letrozole to Piqray and Faslodex. We’d already completed the testing and paperwork necessary to confirm that I have the mutation (Pik3ca) that Piqray targets.
I am thankful for the research that makes the medication I will be taking possible. I am thankful for a medical oncologist who cares. I am grateful for the support I’ve been offered over the last few days.
I’m also really fucking angry.
I’ve been living with this disease for 2 years and while it hasn’t been easy, we’d hit a plateau where I finally felt as though we’d adjusted, we’d relaxed. Probably too much. The reminder of the fact that cancer will take my life, that this disease is definitely not chronic, that there is no cure, that the best medication science can offer right now will only work for a glimpse of time, sucks big time.
I’m thankful for the time with my family that the current medication gives me. At the same time, I’m so angry that I’ll miss out on so much. I’m so angry that the cancer is able to get around the best we have, that allowing the doctors to inject me with poison for more than two years, resulting in hospitalizations and blood transfusions and many many sleepless nights, hasn’t been enough. All of the alternative therapies and everything I’ve done to literally turn my life upside down, hasn’t been enough.
I’ll get back to a semblance of equilibrium, I’m sure. For now, everything is upside down again.