An Oddly Cheery Conversation about Death (and a Few Other Things)

Yesterday I had my first conversation with one of the nurse practitioners in the Palliative Care office at the SCCA. It was a hoot (if in a surreal sort of way).

I might be unique in this regard (though I doubt it) but one of the primary challenges of cancer I’ve found is that pretty much every conversation becomes this oddly complex dance. You’ve got what can be a very emotionally charged situation, with an extraordinarily wide range of possible responses, and so the two parties communicating are each trying to guess where the other person is at and then structure their messages in light of that assumed positioning. It’s this dance that leads to situations like my initial diagnosis, where it took eight days and conversations with literally scores of healthcare providers before anyone actually used the word “cancer.” Even now, my conversations with my providers -- nevermind friends and family -- all tend to be conducted in a sort of weird code which puts a maximum emphasis on uncertainty.

It would seem, however, that palliative care nurses don’t do uncertainty, and they don’t dance. The woman I saw was about as straight a shooter as I’ve come across in two years of cancer treatment. She wasn’t morbid or depressing, but she was more than willing to talk about dying in whatever capacity I desired. 

It was great. 

We talked about medical directives. I learned that the SCCA is actually set up to store a copy of the patient's medical record in their system, so if/when anything goes wrong their set up to know how to react in accordance with the patient's desires. Two years into treatment and this was the first I've heard of that.

We also talked about what they do when diabetics hit their final days. I knew from my Mum's passing that one of the signals that a person is...

Stop. Wait. So here's an example of the dance. I could write "getting close to dying" here, but many people would find that depressing or upsetting. Some -- ahem, Sib4 -- might actually mention it to me, but many others would just be sad. I don't want people to be sad, so perhaps something like "nearing the end" or "reaching their final days," but that just seems overly euphemistic and kinda stupid. So what's a person to do besides hem and haw and stare at their feet? You see the problem.

So anyway, insert your own preferred euphemism -- or not -- for dying here. And now back to diabetics. 

...is that they stop eating or drinking. The body's just not interested anymore. Fair enough, but my question was what they do with a diabetic, who's typically taking insulin to offset the carbs in their food when suddenly that person refuses to eat. Obvious answer: they stop giving them insulin before that point arrives. As my nurse so wonderfully put it, the only reason to try to manage diabetes is to avoid the long-term complications that come from out of control diabetes. Once someone no longer has a viable long-term, there's no reason to keep trying to manage it. 

I love that answer. It's so rare to see common sense in action.

Of course, we didn't only talk about dying. I wanted to talk about dying, but the nurse wanted to talk about all the other things the palliative care group can do for me. And I'm glad we did. 

For example, I mentioned in passing that the infusions have been resulting in two days of insomnia. Nurse's response: "It's the dex." Unlike GHC, which always seemed to prioritize my diabetes treatment over the cancer treatment and so wouldn't give me dexamethasone, a steroidal anti-nausea medication that can cause high blood sugars, SCCA always gives me the dex. Apparently, aside from high blood sugar, dex also causes insomnia. And since my reaction to chemo has never really included nausea, it seems kinda pointless to give me an anti-nausea medication that's going to keep me from sleeping for two days. So my new nurse talked to my PA and got them to remove the dex from my treatment plan. 

So I'm already liking palliative care, but it gets even better.

In the time I've been seen at SCCA, I've been to Vietnam, Spain, Morocco, Hungary, Argentina, Antarctica, and probably a couple of other places I'm forgetting at the moment. I've also had conversations with my oncologist about how my travels, and the interruptions in the treatment cycles they occasionally cause, were potentially having a negative impact on a) his ability to figure out the best treatment plan, and b) my response to the treatment. But nowhere in any of that did anyone mention the fact that the SCCA can arrange for patients to get chemo infusions in clinics in other countries. This, however, was the first thing out of my palliative nurse's mouth when the subject of travel came up. She hears me say New Zealand and immediately responds, "you know we can arrange for you to get your infusions remotely if that would help, right? A few weeks ago I helped get a patient set-up to get their treatment in Iceland." 

So I'm thinking a) I want to get chemo in Iceland just so I can say I've done it, and b) why has it taken two years for anyone to mention this? Granted, there will likely be a cost associated as the fact that SCCA can arrange it doesn't mean my insurance will necessarily pay for it, but still, the option to be able to go away and not have to worry about coming back every three weeks to get poisoned certainly has appeal. 

Long story short: if you find yourself with a terminal disease, don't wait until you're on death's door to talk to the palliative care people. Given the opportunity to start this all over, my first stop would be the palliative care office.