Friends and Family,
Breathing and pain management have gotten better since I last wrote, so now I can come up for air and write with a little more hope. Feels good just using the “H” word again.
Dr. Sanborn hooked me up with a pain management specialist, and she is brilliant. Within twelve hours my pain was quite manageable, and she had plans to make it even better. She also had advice for managing chemo better, and is hooking us up with a neurosurgeon to consider using a nerve block in my spine rather than heavy drugs if radiation doesn’t cure the back pain. I have never had palliative care before, but now I’m an instant believer.
I had radiation last week as well, but it wasn’t what we expected based on my other experiences. This was done in a single, high-dose zapping rather than the more-standard ten sessions over two weeks. I suspect my oncologist had a hand in this, since she didn’t want me to start chemo until a week after radiation, and she didn’t want to delay chemo for two weeks. Either way, I’m happy it’s done. I should start feeling the pain relief within days… or weeks…
I knew there was fluid on my lungs making it hard to breathe, but I had no idea how much fluid until it was drained. Genevieve chased down every provider who had ever even seen my name in print until she was able to get these appointments authorized and scheduled. Since I was getting desperate for air, I have never been happier to see her go all ferocious on these unsuspecting victims until she got action. Things didn’t change much after the fluid was drained from my right lung on Friday, but when they drained the second (left) lobe yesterday, it made a huge difference. Now I see why I couldn’t breathe. Between the two lungs, they drained 2.3 liters of this gunk off my lungs:
More than two full gunk containers! That’s over five pounds of fluid. No wonder I was having trouble breathing. I was drowning!
The next step will be to start chemo (carboplatin + Alimpta) on Friday. I’ll stay on the Tagrisso along with the chemo, and have sessions every three weeks. Unless…
My liver was biopsied on Friday when the fluid was drained from my lung, and the results of that biopsy could change everything. Dr. Sanborn is concerned that the cancer may have converted to small cell lung cancer (SCLC), which is much more aggressive and has far fewer treatment alternatives than the non-small cell lung cancer (NSCLC) I have had until now. I’m not going to look at lab results in MyChart. I’ll just wait until I hear from Dr. Sanborn, who is out of town this week, or my chemo type and schedule is changed, which would tell me everything I didn’t want to hear.
In the meantime, please think non-small cell, or pray for non-small cell, or meditate repeating non-small cell...
Your thoughts, prayers and meditations are much appreciated.
Love,
Dann