The Pain. How do I talk about the pain? What do any of you really want to know about the pain? I obviously don’t care what you want to know because I’m writing this entry anyway.
The pain started as itching at my vulva all the way up the crack of my bottom. Going forward we will refer to this area as my “undercarriage.” Itchy and a little tender, but tolerable, was the way I described it to my radiation oncologist for the first 4 weeks. I was using aquaphor as a prophylactic measure because everyone told me the radiation would cause severe burns and tenderness to the area. I was ready, I was doing fine, and I didn’t think I would really have that many problems. Until the itching got worse. Especially at night. In the still of the night when the house is quiet, the body is relaxed and sleep is only seconds away, my undercarriage would begin screaming with inflammation, discomfort and itching. I stopped sleeping and started getting up multiple times a night to apply creams and salves, sit in shallow, warm baths, and try to position myself just right. The area was also draining because it was raw, and eventually I realized that slow trickle of drainage into that already moist area might be the thing that drove me truly mad. Screaming at the night, pulling out my hair, over medicating mad. But don’t let me get ahead of myself.
Lidocaine ointment will help itching for approximately 10 minutes, shallow baths help while you’re sitting in them (but don’t stay more than 15 minutes or the skin might break down), and Benadryl works for a day or two, but best not to take it with pain meds and sleeping pills, or so they tell you. I promise, there will come a moment when you’re not quite sure you care.
I finally took a look with a mirror as the itching progressed and discovered the cause of my discomfort. All the skin had sloughed off my undercarriage and what was left looked like the skin had been removed and then burned with scalding water. Coincidentally that’s also what it felt like. At this point I was a zombie due to lack of sleep, and suddenly I couldn’t sit. Side sitting fine. Side lying fine. Sacral sitting fine. Getting into and out of cars BAD. Waiting room chairs BAD. Leaving the house BAD. Pain meds good.
They gave me Ambien because I couldn’t sleep, but it didn’t really help. Pain was the central focus of every moment of my day. How bad would it hurt to pee? How bad would it hurt to get up from the couch then walk the 20’ to pee? How bad would it hurt to pat myself dry? Oh god, what if I move my bowels? AAAAAAAACCCCCCHHHHHHH! FYI, stool and urine are highly acidic. When those highly acidic body fluids touch raw skin, you are surprised to hear yourself cry out, and surprised by how much you don’t care when it happens in a public place. How bad will it hurt to get in the car? Any worse than it will hurt to get out of the car? No. I stopped leaving the house except for radiation. I walked hunched over like a 90 year old geisha taking the worlds tiniest steps and trying not to bump into my enormously swollen lady bits. These were not the best days. But then I embraced my meds. With big, loving, open arms I embraced my meds, and while I’m not entirely sure how much they helped, I am entirely sure that they numbed my body to a tolerable level. And for that I am forever grateful.
Hydrocodone helps. 2 really help, but then you go through them faster. The ideal cocktail for sleep is 2 Ambien and 2 hydrocodone. Do not do this. Ever. I was desperate and just before nodding off realized it might have been a very bad idea. I didn’t care. Thankfully I woke up 5 hours later with the most rest I’d had in over a week. Sleep is good. And this is how it goes. You medicate, you readjust, and you wait until it gets better. Always believe that it will get better because somedays that thought is all you have.
One day it hurt less instead of more, and that was huge. A few days later it hurt less instead of hurting the same, and that was even grander. A couple of weeks after finishing treatment the skin healed and it was better. Within a month the pain was gone. 6 weeks after completing my first round of treatment I felt amazing, at which point I started seeing my doctors again in preparation for surgery. FML.