The Interferon continues to kick my ass
Week 30 of self injection complete. 34/52 weeks complete. 18 weeks go go. I’m 2/3 of the way.
These are the lesions on the sides of my mouth. I have one on each side. Right about where my teeth meet. I also have two on my tongue. All of these are at least 1 cm in length. Raw. And painful.
As if the nausea wasn’t hard enough, it actually hurts badly to put anything in my mouth. Even water hurts.
My Oncologist freaked out on me when he realized I was using Taclonex, a topical steroid. I was given it by my dermatologist to treat what I know know was Reiter’s Syndrome. I didn’t realize any of it was a problem. My oncologist freaked out so much that I went into a full dysesthesia attack. Fun.
So I stopped the Taclonex, even though it was working on the Reiter’s Syndrome.
Today, I told my dermatologist this story, and he pooh-pooh’ed the concerns of the oncologist, citing several studies that showed that topical steriods do not make it into the bloodstream. And at the same time was a touch defensive, trying to reassure me that he would never have give me something if he was not 100% confident it was safe.
So it doesn’t make it through my skin into my bloodstream… but I had *skin cancer*. Or am I falsely relating the surface with the site of the original cancer. When the real risk are those rogue cells floating in my bloodstream?
So whose instructions do I follow? How much pain can I take from my fingers? How much of the pain is the infections (which I go a prescription for)? With the infections under control, will I get some of my fine motor skills back? (I’ve been having trouble picking up pills, keys, gummi bears, and other small objects b/c the tips of my fingers are so sore and my finger nails are mostly gone. Also, opening the magnetic clasp on my computer is a comic affair: I find some spoon, or USB cable, or the corner of my iPod Touch, slip it in, and lift it up two or three inches, and let gravity pull the bottom half away from the top half (it usually lands on the table with a thud)
So whose instructions do I follow?
a few nights ago I got quite drunk with O. we were going to have a nightcap and hit the sack early, b/c we were both stressed out. and then as we were finishing that drink, my house guest adam walked in, and we poured another round. then more. then more. i think we did half a bottle of whiskey.
i haven’t drank like that in over a year for sure. i cut alcohol out once i started to get anxious pre-surgeries. and it just lost its appeal. since then it has hurt my mouth too much to drink, and wine has made me feel terrible, even when i have just a sip. but i have discovered that if i drink straight bourbon my mouth is numb within a couple of sips, and after that i can’t *feel* the burn.
so we slept late the next morning. we were going to head upstate early, but that didn’t happen. O rolled over and said “oh, i’m hungover” and i said “yeah me too” and sprung out of bed and said “but i feel like shit every morning, so i’m used to it!” I laughed, and old-man-shuffle-walked to the bathroom (like I do every morning), took my morning tylenol and advil. and made us breakfast.
O couldn’t get out of bed for an hour or so, she was so hungover. i, on the other hand, felt like it was just another day. same old same old.
i could choose to learn two lessons from this:
1. i really do feel really bad every day
2. i might as well drink every night
i’m not sure which is the better lesson
My fingernails are growing in like soft shell crabs, with only the thinnest of barriers between me and the world. The nails that were there before I started the IFN have a slight pinkish tint, and the transition from nail to no-nail is pretty rough.
You can also see the lesions and pitting in at my fingertips. The pointer finger is from zippers and buttons, the ring finger is from typing (especially pressing shift and command)
I reached the half way point in my self-injections. 24 weeks done, 24 weeks to go. 72 injections.
I decided I want to go get the most expensive box of 24 chocolates I can find, and eat one every week for the next 24 weeks. Then (ever the pragmatist) I decided they might get stale, so I will get them in two rounds of 12. What is the most indulgent? Jacques Torres?
It has actually taken me nearly 10 days to get adjusted to the idea that I halfway, and that I have more of this behind me, than in front of me. It was really hard to feel that intuitively for a while. Now I feel it, and it feels good.
Of course, though, the last month, and the next two months are supposed to be the hardest ones. I can attest to how hard the last 10 days have been.
My eyes flake and crack at the folds. This is a pretty average state of affairs. It is better at times, and worse at others. It goes up and down every few days. Normally this is treated with a steroidal cream, but I am not allowed to take steroids. So I just have to grease my eyes up as much as I can
I can’t seem to get a really good picture of how messed up my legs are. They look like I have been sleeping with some blood sucking insects. For weeks. They are just covered with these semi-open, semi-healed wounds. And I have scratching problems, so they keep being reopened.
Somehow I was never given a sharps container. So I have carefully collected my spent needles, and syringes with the intent of taking them to my doctor for disposal. I did actually take them to my doctor, but I get so tense when I’m there I forget to ask a lot of questions, and do things like dispose of my sharps.