Jay Lake (jaylake) wrote,
Jay Lake

[cancer] Yesterday's medical appointments

Yesterday I saw both my medical oncologist and my oncological palliative care specialist. In both cases, the conversation essentially consisted of, "Yep, not dying just yet." These are not bad conversations to have.

This is my off-month appointment, between scans, so all we're evaluating is the general state of my health, and the lab work on my blood. Except for some upward trending bilirubin levels (an indicator liver functions), my blood work was fine. My medical oncologist scheduled my two-month scan for next month. (About which more anon.)

Meeting with the palliative care doctor, we wound up mostly discussing my continued cognitive impairments. They think it may be a result of the medications I'm taking for sleep, which in turn are necessitated by my core cancer medication, Regorafenib. They switched me to low-dose Ambien, also known as Intermezzo. (About which more anon.)

I also had a discussion about my declining appetite. The current hope is that getting me off the Trazodone will help that.

On leaving the clinic, I made my CT scan appointment for November 8th. We then headed for the pharmacy to drop off my Ambien prescription. Before I'd even gotten home, the pharmacist called to tell me that my health insurance carrier won't cover the low-dose form, Intermezzo. They suggested I ask for the more common 5 mg Ambien. So I called the health insurance carrier, where I learned that my appeal process for the prescription decline is very complicated. I wrote my doctor a note asking whether I should appeal or they should represcribe.

While in my hospital's MyChart system to write that note, I also checked on my CT scan appointment. It had been made for October 8, 2014.

I called back in to the clinic in a state of WTFery. I was assured it would fixed. A few minutes later, I got an email alert about a new CT scan appointment time. I doublechecked, and it was still October 8, 2014, just in a different time slot.

So I called back in to the clinic again, in further state of WTFery. This eventually got sorted out, after some snarkiness from radiology about of course they knew what year it was (demonstrably not true).

Still no answer on the Ambien, but I'll have one sooner or later. The scan appointment has been properly set. But this is what I mean when I say it never ends around here. Simply to pick a prescription and go to a critical scan appointment, I had to make (so far) five followup phone calls and reschedule twice, due to problems at the other end. This would be me, the cognitively impaired cancer patient. If I wasn't being proactive about being my own advocate, there would have been no appointment for me on 11/4 when I walked into the radiology unit. As for the Ambien, I'm not sure what to say, except it's my problem to solve, because if I don't, I won't get the medication.

This kind of crap is why being seriously ill is a full time job. And mind you, I have a good hospital and good insurance and a lot of people of goodwill and professional competence helping me.

Tags: cancer, health, healthcare, personal

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