Time for the two week update – more fun with cancer and chemo
I am sad and tired. First ground rule to this post – do not write “keep it up” or “you gotta be positive” or any of that nonsense in my comments. I know all of that already and you telling me that either makes me feel inadequate or annoyed. So let’s save us all the trouble and skip those kind of comments.
It has been a little over 2 weeks since my chemo and I thought I would fill everyone in and write a little to perhaps alleviate some of my sadness.
I HATE PREDNISONE! There I said it. That has been the worst part of the actual treatment part of the chemo medicines. 5 days at 100 miligrams a day and then an abrupt stop really stinks. Saturday night I did not sleep and the other nights I slept no more than 5 hours a night. When I am awake it feels like being a field mouse on crank. You have a ton of energy and all of it is for naught since you can’t really focus on anything for more than 10 seconds at a time. I found myself feeling anxious even with an increase in happy pills. It was interesting to take the dose with breakfast and start to feel the rush come on and then feel it start to all wear off at about 10pm at night. The crash after stopping was pretty sucky as well. My legs were twitchy, I had terrible mood swings, my face started breaking out…
That being said – I feel incredibly lucky that this is what I have to deal with. I am complaining here but the background to it is that I feel incredibly fortunate. The eldest daughter and I went to a Team in Training event last Saturday – I am an honoree this season. When some of the honorees told their stories you couldn’t help but cry. I knew I was fortunate before but there were new depths of appreciation. I am not currently suffereing from heart failure due to the chemo, I am not being put in a medical coma because there would be no way for me to deal with the pain – it could be so much worse.
Back to our story… I felt generally good the first week – even went to a meeting at work in San Diego. This last week has been harder. I am not sure if it is coming off the prednisone or if it is the killing of my blood cells (an intended consequence of my chemo) but I feel drained. And it is not the kind of drained that is helped by a nap, though I have been doing that. It is more this lack of energy and being just plain wasted. I have been able to work and go about my day but it just feels harder.
A second body blow came when I started suffering from alopecia (a fun way to say hair loss). At first it started in my nether regions when I was showering. Now don’t all you porn studios call at once, I am a bit occupied now with my cancer killing and loving my family. Then yesterday I noticed that if I pulled on my beard and head hairs they would just come out. I knew this was coming and I told really care about it from a looks perspective. I have always told people that I hate shaving and that I would undergo electrolysis if it would really alleviate the need to shave. But this is a very real physical manifestation of my chemo and the cancer. I have been used to having hair on my head. For a large part of my life barbers would comment on my how thick my hair was and I would call it a weed and tell them to use a mower. It has not been as thick of late with a bald spot on the back and my widow’s peak, which my children love tracing with their finger. Never the less it is hard to have this happen to my body. Again I am fortunate that I am neither young nor a woman where there is much more societal value on hair – my heart goes out to them. Still, it is hard.
Another physical manifestation this week was grating parmesean cheese for the kids to put on their pasta. I nicked my thumb and it bled, which nicks tend to do. The difference this time is that it bled just a bit more and for longer than I expected. The chemo I am taking basically stops your bone marrow from producing new blood cells for a while so I will start to dip in the number of platelets for a while. Unfortunately for me this means my Pro hockey as well as UFC career have to go on hold for a while since I am not allowed to engage in activities that can cause bruises and bleeding.
The other hard thing that happened today is that my children caught a cold. In a non-cancer house this is really no big deal and I like tending to my sick children. It has a very fatherly feel to being able to protect and heal your children. But since I am near my nadir, which is cancer speak for when my blood counts are low, I have to be very careful about getting sick. A fever over 100.5, sore throat, and a long list of other symptoms become an immeadiate call to the Dr. Today we, the cp pack, had to try to figure out how to make that work. I was feeling sick myself and so nervous about what was happening to me, but at the same time I had to someone tell the eldest and the artiste that I could not really be near them today and had to spend most of the day in my cave room. It made me feel bad to tell my kids not to kiss me or hold my hand. I know I had to do it but it still feels terrible.
Perhaps my nadir in blood cells is matching my mood.
On the good side, we had wonderful friends over for shabbat dinner last night, the nausea was not a big deal, I worked the last two weeks, my friends have been amazing (Dave B sent me kung fu hustle, one of the best movies ever; Naomi knit me an awesome hat; I got flowers from MJ, I have received a ton-o-emails, twitters, phone calls and other signs of love), my family has been loving and wonderful, I got an appt with the integrative oncology unit at the osher medical center, my tumors under my arm have definitely shrunk for now, and I am still waking up each morning!
This week I have my blood drawn on thurs. to check my blood counts and other various signs. I see my nurse practitioner to talk about how things are going. I think I am going discuss prednisone with her and then also some more about my slow metabolizing liver.
Time to turn it in for the night…
I need to share a little boy story tonight. So I am in bed feeling kinda sick, avoiding the girls with the colds, and generally feeling sad. The little boy comes in to share the joy of listening to the Shrek soundtrack playing on his Deigo CD player. He bounces on the bed for a while and then notices daddy is not feeling so well. So he stops listening and repeats a move I have done to him many times. He starts to rub between my eyes and down my nose with his little fingers. Such a sweet and gentle touch. I close my eyes and relax. Hooray for him and bring a soft moment to an otherwise relatively difficult day.