We all know the cliches: recovery is not linear. You cannot put a timeline on bodies. You don’t understand challenges of recovery until you experience them.
It is one thing to know that intellectually and quite another to live it.
Coming home has been hard—I have to do a lot more for myself and there is no net. For instance, when a cyclical vomiting episode kicked in on Tuesday it took 90 minutes to get out of it because there was no IV Zofran on offer. That left me totally drained yesterday—literally and metaphorically. The cyclical vomiting is new since I was in the hospital, and its phenomenology probably warrants a post in itself.
This morning it really hit when I woke up, or maybe it was just my first chance to actually feel depressed. I awoke with a head full of wool from the codeine cough syrup I take to help me sleep and not cough at night—I have always hated how codeine makes me feel but the trade off is necessary for now. For the first time in forever, there were no other opiates or other mood-altering drugs in my system, and for the first time since this ordeal began, the negative thoughts came fast and hard. Which is weird because at my 2:30am wake-up, right before the coughing started, I remember feeling overjoyed at the idea of the number three.
At the hospital I was “doing great”—walking circles around the unit, climbing stairs, and on decreasing oxygen needs. I’ve managed some of that here. Yesterday I walked about a block outside and did the stairs. But my oxygen saturation has dropped and my oxygen needs have gone up. This feels like a huge step back. The relatively simple life I had planned here—and briefly lived—felt further away this morning than it did when I left the hospital. (Though that is certainly an illusion. What’s not an illusion is taking Carrie away from her sabbatical.) The physical therapist I saw today said this happens to everyone as they move from very controlled hospital environments to home environments with their suites of allergens. But this morning I hadn’t heard that yet and it would not have been much consolation at the time.
When Carrie woke up I eventually shared my feelings and started to do stuff and feel better. Later on a friend stopped by with a dog and a ukulele. I’m eagerly anticipating dinner as I write.
But I am going to have to find some kind of patience I don’t normally have.
In point of fact I am doing many things for myself even though I am still very dependent on Carrie. I’ve been following the Occupational Therapist’s advice about conservation of energy — sort of a naive spoon theory — and the physical therapist’s advice about moving every hour, along with the exercises I was given.
For now I have to just do the work.
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Bonus round: cyclical vomiting phenomenology.
Read at your own risk. this is a symptomology for the search engines.
I think this is actually slightly different from what people with true cyclical vomiting experience, but I don’t know what else to call it.
It begins as a normal coughing fit, the purpose of which is to get phlegm out of my lungs. Or so I’m told. But somehow it keeps going. Maybe there’s a little food stuck in my pharynx, and that comes out. That’s where it used to stop. But in the hospital, it would keep going, as my stomach would begin emptying its contents (Emesis is the name of my next metal band). The thing is, I AM NEVER NAUSEOUS. This seemed to confuse everyone at the hospital. It just keeps coming, and the stomach acid burns my throat, which keeps it coming. It’s like an uncontrolled reflex. For coughing fits they recommend codeine. For vomiting they recommend Zofran, which worked well intervenously. At home, my doctor suggested Ativan, which either did the trick or I just ran out of gas after 90 minutes. It could also be a stomach acid thing. Lenvima gave me big reflux problems, but I stopped taking my ppi because the pills were too big. I don’t know if dabrafenib and trametinib are doing the same thing but they are known to be hard on digestion. For now, I’ve got a new smaller-pill ppi prescription and I’m taking a prophylactic Zofran in the morning, which makes me loopy in a way I don’t like. At least I now have a plan for the next attack. Though I’d love it if there wasn’t one.
In the meantime, stay hydrated out there!