A request before we get into the weeds with this post: I would be very curious to know from other chronically ill friends how you prepare for a debilitating “flare up” or “episode” when you are on your own. Over the years, I’ve learned a lot from years of watching Carrie deal with blood sugar management: test and monitor; treat the diabetic first, then fix or adjust the equipment; have everything you need on you; have stuff in multiple places, so that’s what I’ve done.
At 2am Monday I woke up shaking so hard the whole bed was shaking. Brutal. This is one of the side effects of my cancer meds: rapidly spiking fevers, accompanied by chills and uncontrollable shaking. Sometimes the chills come as a warning about the fever to come, sometimes they appear at the same time. Sometimes I hyperventilate because I’m curled up in a ball and not giving myself the lung capacity to properly exhale. I need to stretch out and open up my chest, which is the opposite impulse of what one does when very cold. Carrie went and got me Tylenol, Advil, applesauce and Ativan, piled blankets on me, and 15 minutes later it started to subside.
Carrie leaves for California early Friday morning. Apart from the “missing your spouse” part of it I am mostly fine with it. The biggest concern for me has been two debilitating conditions that sort of take over my body like demons: the uncontrolled, repeated vomiting that grows out of a coughing fit and can go on for 90 minutes if untreated; and the aforementioned shakes/chills. So how to deal with these while living alone? Here’s what I’ve come up with:
- Monitor, and act more quickly/preemptively. I’ve been known to “wait and see if the vomiting subsides” before hitting it with the Ativan/Zofran combo because I don’t like how it makes me feel for the next day or so. (Note: I am overly optimistic and this has never worked. Draw your own conclusions about why I kept trying.) But the vomiting is infinitely worse. So if I vomit more than once, I’m hitting it hard, right away, and will just deal with the brain fog. Ditto with Tylenol/Advil for fever, which I will monitor more closely.
- Stations. The problem with the shakes is they often start while I’m asleep, so I wake up shivering, shaking, and if I’m not careful, hyperventilating.That means having meds ready to hand in the bedroom and living room, the two places where that could happen. I’ve done the same for the repeated vomiting, adding a third station in the kitchen, which is the other place it’s happened. Each station has a sort of “kit” set up with the relevant medications. And for the shakes, I’m placed everything in a very-easy-to-open container with meds (more than I need so I can drop some), applesauce and a spoon to swallow them, all ready to go.
I also have a bag with all the meds I’d need in emergency that lives in my purse or backpack, whatever I am taking out of the apartment. (I also carry tissues and an emesis bag with me for crises.) - Emergency call list. I have a long list of local people who have volunteered to help. If I can get the drugs into me, they work. If for some reason I can’t get the drugs into me, I can call someone to help, though I am not sure I would be comprehensible on the phone. Still, that’s something. And better than 911.
Symptom / Side Effect Report:
Sometimes I just don’t understand my body. With my oncologists, I’d worked out a plan where I’d take a couple days off from the meds and then resume them when the fever / shakes hit. That worked well until last week, when I went back on the meds and within 30 minutes had a fever. So I stopped, my oncologist here sent over a steroid prescription to the pharmacy, which I picked up Friday night. The whole time there and back I was thinking “this is harder than it should be” — turns out I had a fever the whole time, which just goes to show that I need to be better at self-monitoring.
So, armed with steroids, I start the meds again Saturday morning. No fever. In fact, I feel good. I even feel good enough to clean up a bit and wire up a little guitar looping area in the front of the apartment. Still no fever in the afternoon. I take the meds last night, fever shows up 30 minutes later, and I hit it with Tylenol and Advil, all good. Each time I wake up in the middle of the night last night, no fever. Today, no fever.
I had been taking 1g of Tylenol 4 times a day, which is one more than they tell you to, and I was worried that going down to 3 was not working for my fevers, but it did yesterday.
I have one theory about this, and it is much too early to evaluate it because it’s only day 2 back on the meds after my abortive restart. Perhaps it is dabrafenib causing the fevers (that med is also doing the heavy lifting on fighting the cancer) and it is trametinib which moderates dabrafenib’s feverish tendencies. You take trametinib once a day (morning or night) and dabrafenib twice a day (morning and night, about 12 hours apart, give or take). I had been taking trametinib at night on the advice of someone on my cancer group who said it made them tired. But at my last appointment, the doctor noted that they recommend taking it in the morning. When I asked why it mattered she said “it doesn’t really, just do what works for you.” so when I restarted, I took it in the morning. Is it really that simple? It’s too early to tell, and I strongly doubt I will be shake-free for all of my time apart from Carrie, but at least I have well-labelled, easy-to-open boxes waiting for me.