Sadly, I haven't been well enough to write a proper blog post that's up to my standards, but am functioning well enough to give a quick update.
It's been a 1,013 days since my original prostate cancer diagnosis, so I missed the magic milestone of 1,000 days to do something special. It's also been about 18 months since my neuroendocrine diagnosis, and everybody else I'm aware of that got a a neuroendocrine diagnosis in January 2020 has now passed. This includes a friend from work who was diagnosed with small cell lung cancer (basically neuroendocrine cancer of the lung) about a week after me. These deaths have cast a large dark cloud over my recent struggles.
In the weeks after Folfiri failed, I developed a severe pain in my left buttock and an MRI showed no spinal compression and offered no other explanation. I've since had two treatments with Lubrinectidin (approved last year for SCLC, being used for my neuroendocrine at the suggestion of Dr. Beltran) and while my liver enzymes have improved implying that this is working at some level, my leg pain has evolved and now affects my entire left leg. For a while it was also affecting my right leg.
My daily dose of oxycodone has tripled, I've started on gabapentin, and am currently increasing my dose of dexamethasone. Still, I have several hour periods where the pain in my leg breaks through it all and I'm left screaming and crying in pain. This interferes with sleep, and the side effect of most of these drugs is a foggy brain and a drunken body that staggers to the bathroom occasionally. Such short trips are enough to aggravate the pain. Sometimes I have trouble getting a stream started in the bathroom, leading to multiple trips to empty my bladder once. Welcome to my version of life in hell.
At this point fighting cancer is no longer my number one priority. I'm working with my oncologist (mostly his NP but she's going on vacation) to try to get the pain under control enough so I can tolerate additional MRIs, perhaps a lumbar puncture, any test that may help find the root cause of the pain. I'm desperate enough I've even suggested the idea of checking myself into a hospital so they can roll my bed from test to test instead of me having to take a long car ride each time.
I'm still on the waiting list for the DLL3 trial, but in my current condition I doubt I'd qualify. I certainly can't imagine riding into Dana Farber from rural MA for the daily blood draws that would be required at the start of the trial (first use in humans, so they want all the data about how long it stays in circulation, etc.)
I need to get this pain under control, preferably with less opioids and gabapentin so I can walk and drive safely. Then I can think about returning to my BHAG (all caps) or even a scaled down bhag (small letters, same idea, shorter distances). Until then, I'm basically either asleep, or laying on the couch trying to manage my pain if I'm not groaning, screaming, and crying though a major flare which has been happening on average at least once a day.
Once the pain reaches a certain critical point, my thoughts go dark and I honestly believe I've entered my final spiral and such emotional turmoil does not help get the pain back under control. We also upped my dose of clonazepam to try to stop or slow down this spiral, and so far it seems to be helping, but nothing has been a magic cure.
In summary, I'm in a really bad place right now, and I'm coping with the pain because I have no other choice, and not because I have any special powers of pain tolerance. I'll point to all the time I spend crying like a baby as proof.