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.
Dana Jennings was/is writing a weekly blog post about his fight with Prostate Cancer. O pointed me to this one about libido. While my situation isn’t Testosterone related, the way he describes his libido just vanishing are so much like my experience of the last two months.
As recently as two weeks ago, my libido hadn’t yet checked out. But since then, hormone injections — like the oncologist’s elves — have kept doing their job, which is to suppress testosterone. No testosterone, no sex drive, and, my doctors and I hope, eventually no prostate cancer.
But even with the promise of being cured, the physical changes in my sex life and, more shockingly, my recent loss of interest in sex, are among the most difficult aspects of having prostate cancer — not just for me, but for my wife, too. Men often don’t want to talk about these changes, as if words and impotence couldn’t possibly coexist.
A list of Side Effects that I have to tell my various doctors about. Compiled with O’s help.
- muscle aches (strained bicep)
- joint pain
- Finger nails are not growing in thick enough
- lip and tongue cuts
- infected lesions in ear canals
- nose crusties
- bloody noses
- nose infection/pain
- memory problems (persistent)
- slurring of speech
- loss of balance/falling
- ongoing lesions (legs, arms)
- hair loss
- irritability + spaciness VS indifference + apathy
- loss of appetite
- broken tooth
today was the end of week 22 of self injection, which if you count the 4 weeks of IV high-dose, makes it 26 weeks, which is halfway through the year. I kind of think of them as two different events. the 4 weeks (which was really 6 weeks). and the 48 weeks, which is actually going to be closer to 55 weeks, with all of the breaks and drug holidays i have had to take to let my body heal. The one number that is undeniable is I have exactly six months left. Half a year. And that going forward it just gets less. I’m at the top of the hill, and everything is downhill from here
despite that uplifting bit of cliche’d symbolism, i’m feeling pretty shitty right now. my body is really falling apart. i strained my right bicep, and the interferon interferes with all of my healing processes. So strain not healing, and as i tweak it by accident it gets worse, so now i think i’m going to have to put it in a sling to protect it. more hassle. more atrophy.
my fingers are falling apart. more lesions, and split skin. that wont heal. same with my face (eyes and mouth)
the weirdest is that i chipped a tooth at the front of my mouth sometime about 48hrs ago. probably in my sleep. it was a fake tooth – a porcelain covered gold crown from a root canal, so the good news is that the tooth is long dead and i don’t have to worry about that. the bad news is that the break created this sharp hook like protuberance that is snagging and cutting my tongue when i talk or eat. so not so much talking or eating until i can get into my dentist
I just woke up. With a bloody nose and an irrational desire, no… need, to listen to Stairway to Heaven.
I found a quick mp3 that was so over-compressed it almost sounded like it was live. It was kind of an amazing experience.
And I guess the lyrics are about life, power, death and choices, and “its not too late to change road you’re on.” I realized that for probably the first time just now. Because I haven’t really listened to the song since the last song of my last High School Dance. Every dance ended with that wistful “and she’s buy-uy-uy-uy-uy-ing as stairway to hea vun.”
My naturopath has me taking fish oil for depression and joint pain. I had been taking the gelitin encased ones. But my naturopath says you don’t get. Much out of those and he has me on the real thing. One tablespoon straight from the bottle.
It isn’t as bad as I thought. It is a little fishy which is covered by the lemon flavor. I’ve actually kind of acquired a taste for it. In fact I want it to be more subtly infused with thyme. Or maybe rosemary. I think that freshly lemoned fish oil could be a hit in the kinds of restaurants that serve wheatgrass. I’m joking but I’m also serious. San Francisco, I’m looking at you. Let’s see some gourmet mercurey free omega-3s!
We had dinner last night at BH and JW’s. The food was wonderful. They played some great music we had never heard of before. We caught the 1990 hiphop references that are generationally specific.
As we were leaving BH said something to me like “you are my motivation. Whenever I feel overwhelmed or like I have so much on my plate and I think about how much you are going through and how productive you remain.” it was really touching. And affirming.
As per usual I defer much of the credit to my team of two to three assistants. Without them I would not be able to handle this.
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.
Its late, i’m up. Tossing and turning in bed.
I was thinking about the blog. I was thinking about being done with treatment. I was thinking about how I will have to transition to a new state of not-quite-healthy-forever. All my lesions will go away. All my dysesthesia will be under control. I’ll have a rough time coming down off of my Klonopin, and I’ll get my sex drive back. But I will still be living with a 15 to 30 percent ‘rate of re-ocurrance.’
I don’t want to do this again.
Depending on how you count, next week is halfway through the 12 month treatment, or two weeks later is halfway through the 48 week self-injection sequence.
And the end of February is the one year mark since I was diagnosed.
I don’t want to do this again.