Uncertainty, Trust, and Surrender

 I'm back in the hospital again (for the 7th time). I've had 12 weeks of immunotherapy (Pembrolizumab) and it looks like I'm having a serious adverse effect, where my immune system is so revved up that it is not only attacking the cancer, but in my case, also attacking my liver and you really need your liver! My liver enzymes (ALT/SGPT) are 10 times the normal level and so the main goal for now is to protect the liver and lower those numbers.  They have me on IV steroids (Methyl-prednisone) which has stopped the increase in the numbers but hasn't lowered them.  They may give me a stronger drug (CellCept) and/or do a liver biopsy (with a long needle). The numbers are high but not alarming, still we want to deal with it before it gets out of control. They don't allow cannabis gummies in the hospital and it seems that they may harm the liver if not dosed properly, so no THC or CBG for me, but the steroids help with appetite!

Since this is probably a reaction to the infusions, I might not be able to have any more Pembrolizumab infusions, but my oncologist says that the infusions I have had have trained my immune system to effectively kill the cancer and I might not need more infusions.  There are also other drugs I could take, including traditional chemotherapy, but I'd rather not if possible.

At this point I'm in a peculiar situation as it is not at all clear what is happening with my liver and how that will impact my future cancer treatment, so there is a lot of uncertainty. In 2 weeks I get a brain MRI and meet with my neuro-oncology team.  I'm hoping that there are no new mets and that the tumors have all been shrinking or eliminated... more uncertainty!

My strategy for dealing with all of this uncertainty is to trust in my medical team and to surrender to reality. It is what it is and if I want to beat the cancer, we have to know where it is and how effectively my body is (or is not) fighting it.  I'm comforted by knowing I have the full arsenal of modern medicine behind me and a world class medical team of research physicians as well as excellent nursing care. I also have no pain (though a pretty itchy rash) and the steroids have bolstered my appetite so I'm having no problem eating. My mobility is also really good. I can walk 15-20 minutes without a cane or walker.

Yas spent the entire day with me yesterday but for the rest of my hospital stay she will go back to work during the week, since I'm clearly in good hands. I hope to be back at home within a week.

Caitlin is in LA for the NaMM convention where she will be demonstrating her DJ skills on new controllers. Ryan is working at Jos A Bank but said the cold weather discourages customers, and Shaye is busy getting all of her appliances hooked up in her home in NOLA!