Health Update #10: Palliative Care

Mom and Pris, August 2022, Old City Cemetery, Monroe, LA

Happy Mother's Day. I'm fortunate to still have my mother in my life, though I know right now that she and the rest of my family are very concerned about my health. 

This past week has been much better by far than the few weeks prior. The Dilaudid (2 pills every 4 hours) was doing a bit better than the Oxy, but I was still in quite a bit of pain and having trouble sleeping, moving from the bed to an arm chair to the couch. I met with Tim, the Palliative Care Coordinator, on Monday. 

Tim appears to be about my age, a nurse with a great deal of experience in palliative care, with a grey chin puff and a Pride button on his lapel. That was reassuring to me that we would be getting care from someone a bit openminded and on the same wavelength. As a number of people have said, it's important to have a good match. If you ever wonder whether or not these signs or signals can put patients at ease, I can attest that they do.

Palliative Care and Hospice Care both fall under the same umbrella -- they're meant as wrap-around services to ease the suffering and increase the quality of life for those struggling with major illnesses such as cancer. Hospice is comfort care without curative intent; the patient no longer has curative options or has chosen not to pursue treatment because the side effects outweigh the benefits. Palliative care, on the other hand, is designed for patients with major illnesses who have the possibility of being cured. In part, the distinction is over whether or not one qualifies for medicare benefits. My medical oncologist explained to me in our last session that immunotherapy is typically reserved (per insurance guidelines) for patients in the final 6 months of disease, but that we were able to negotiate with the insurance company for me to be covered for curative treatment.

While Palliative Care covers a range of comfort measures, for this visit, we focused on pain management. Tim added a 25 microgram fentanyl patch (with all requisite cautions) and adjusted my Dilaudid dosage from 4 mg to a sliding scale of 2-6 mg. I found quickly that 6 mg was the magic number, at least for now until my arm heals a bit more. I've been able to sleep through the night each night this week, and it's been blissful. Working on getting set up with physical therapy and possibly some massage therapy. Maybe I'll take another trip back to the pedicure salon sometime soon. Guys, I highly recommend it. Tim will be taking over managing the medication for anxiety and depression and helping to manage any other physical or psycho-emotional symptoms. 

I spent the week with Pris and Scy who drove up from Philadelphia. They arrived on Tuesday evening and we were able to get some quality time in and run a few errands and to a number of appointments together with me while Corrine returned to Chicago for a few days to catch up on some work details and reconnect with her friends and family support system. She's been a real trooper taking care of me and wholly deserved a short break. 



Scy and Pris drove me to my post-op in Grand Rapids where the oncology nurse removed my staples and the oncology surgeon told me that everything looks good. The surgeon seemed quite hopeful that this regimen of treatment would be successful toward achieving remission. After the post-op appointment, we stopped at The Green Well in Grand Rapids for their vegan options (though I went with the cuban sandwich, of course).


Cuban Sammich

On Monday, I'll start radiation on that shoulder, every day through Thursday, and then the first chemo and immunotherapy session starting the following weeks. That's likely to have the worst side effects, though I can't imagine worse than the bone mets. They'll re-scan sometime soon to make sure that the cancer has not metastasized somewhere else such as the femur and that all the lymph nodes and other organs are still clear. If that's the case, they'll continue with the chemo/immunotherapy once every three weeks for another 12 weeks, and then just immunotherapy for the next year. I'm feeling a bit better about it than I was last time.

Pris asked that I play some happy music, rather than so much Warren Zevon and Gary Miles and The National and Nick Cave and such, so here it is:







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