For the first time in quite a few years, the weight of MBC is is a very present threat and we find ourselves bracing for what’s coming. In hindsight, I think I’d already started bracing for the news we got last week.
Early last week, I had a PET/CT, which I get roughly quarterly, and the results demonstrated that the cancer has spread to my liver. I now have three measurable hepatic lesions along with a variety of new, more active, larger and growing bone mets in a variety of places throughout my skeleton. The combination of Verzenio and Faslodex, my third line of treatment, has utterly failed.
While any diagnosis of cancer is devastating, we know that not all cancer is created equal and the same goes for metastatic sites. For the last 4.5 years, one of the factors that has allowed me to breathe easier is that the Mets were “just” in my bones. Bones can (and do) break due to the Mets and I’ve had quite a few “pathological fractures,” but death is not a direct result and the life expectancy of someone with bone only Mets is roughly twice that of people with soft tissue Mets.
With one phone call, that small nugget of hope I’d been hoarding was stolen forever.
As I understand it, when the liver ceases functioning and no longer filters toxins from the blood, the build up of those toxins causes a great deal of confusion and then an hepatic coma. I’ve seen and heard this happen to quite a few dear friends. Their communication becomes weird and garbled as their brain function becomes more and more difficult and then the news that they died is shared.
There have been some terrifying moments since my diagnosis in 2017 and this news ranks pretty high. My husband says this news is the second worst of his life, only outranked by the news of my diagnosis. It’s getting harder to rank news like this for me.
And so we find ourselves behind and scrambling. The cancer cells have been merrily proliferating over the last several months as my second line of treatment failed and then the replacement hasn’t ever done much of anything to keep them in line and now we must catch up. There is no time to waste now that an organ is involved, an organ that I desperately need to work properly for as long as possible.
After a LOT of time on the phone and many emails, we have a rough plan that has been reviewed and approved by my quarterback of treatment here in Miami, Dr. Wang, my doctor at the Mayo Clinic and several other doctors and researchers that I trust to provide input. I’m also working on an appointment with another doctor just to have another set of experienced eyes on my treatment now that the stakes are so much higher.
Let me just say that part of what made things more difficult to deal with was all sorts of disruptions and staffing issues due to Covid. Initially, I was being offered March appointments to fulfill orders that had the word “stat” on them. I was able to get the timing sorted out with a great deal of effort, a lot of name dropping, tears and a reminder to many different levels of people that this is literally life or death for me. It was exhausting.
So, this week, we have bloodwork for a liquid biopsy and other tests (gotta check for Covid too!) in advance of the biopsies, chemo education on the new meds and the biopsies of the new liver Mets. A silver lining of having soft tissue metastases is that we will finally have an actual biopsy of a metastasis for the first time. For 4.5 years, we have been guessing and assuming that the Mets are still the same subtype as my original tumor. Now we will actually find out for sure.
And next week, I will start the combination of Taxotere/Docetaxel, an IV Chemotherapy medication and Xeloda/Capecitabine, an oral medication. The schedule is a bit complicated and will take some time to get used to but will be anchored by the infusions every three weeks so long as my body tolerates it.
As usual, it will take some time to adjust to the side effects of the new medication. While everyone is different, I can expect with some certainty to deal with some peripheral neuropathy, likely low white blood cells, nausea, diarrhea, nail changes and I will probably lose my hair again.
And while I’ve been working on sorting all of this out, life has continued. The boys have to be taken to school, schedules have to be addressed, homework done, and bedtimes observed with teeth brushing and movie nights and lunch boxes too. The combination of cancer care and real life is often a jarring whiplash of emotions and focus.
We haven’t told the boys yet. The last time I lost my hair they were two and four. They could care less and we made it as fun as possible. At six and eight, we’re expecting some different conversations.
This marathon is brutal.