Saturday Update

Feeling better today, almost human : ) My primary complaint is fatigue; I'm just tired and it seems like no matter how much I rest I am still tired. I ache a bit and for the moment eating doesn't really give me any pleasure, which, if you know me, is a big deal. I figure I've lost probably 60 percent of my taste sensation since I started chemo.

I just finished watching a soccer game between Wiggan and Tottham Hotspur from the English Premier League. It ended in a 1 all tie. Very good game; a lot of goal scoring chances but no one managed to actually put the ball in the net. There's another game coming on now which I am going to go watch.

AM Update 4-18-2008

Sort of a hard night. Slept fitfully, had a bit of nausea and ended up taking compazine which took care of the problem.

I'm getting tired of updating my health. I know you want to know, but it's like, ok, I am nauseous, blah blah blah. I'm over this already.

I heard this morning that Bruce Springsteen & The E-Street Band keyboardist Danny Federeci died of melanoma at age 58. I didn't even know he was sick. As you may know, I am a big Springsteen fan and Danny is an integral part of his music. It sort of feels like a part of my childhood is gone, because so much of my teenage and young adult life was influenced by Springsteen. I haven't really followed the band in a while; I prefer the older stuff to the new stuff. It is sad to think that the band will never really be complete again.

PM Update 4-17-2008

Although I am extremely tired, in general I feel good. After my bout of nausea and constipation last night, I have not experienced a lot of discomfort. I feel better then I did the first time around, except for the overwhelming fatigue, which hits me like a ton of bricks.

Assistance Needed

OK, so I had the same pattern tonight as I had the last time I had chemo - horrible constipation, followed immediately by nausea - but I had it a day early this time. Anyone out there with more experience then me with chemo, is this a normal pattern? Should I plan for this?

I am feeling much better now. The nausea didn't last nearly as long and I didn't puke nearly as hard as I did the last time, but the constipation was equally traumatic.

I need to sleep.

Thoughts About my Uncle Eddie

My uncle Eddie died of cancer in 2006. His cancer was different then mine. I have been thinking about him a lot lately, especially today. I spoke with my Aunt Vicki after seeing the doctor and finding out about the genetic mutation I carry. She is an amazing human being, not only because she really knows her stuff having been through chemotherapy and treatment with my uncle, but because she is so kind and so strong. When my uncle died I wrote her a letter basically telling her that I didn't have the words to express the sadness I felt, that I couldn't begin to imagine the pain of what she had to go through and it was pointless to even try. I felt inadequate because words and expressing myself through them is my strong suit. But there really were no words.

When I spoke to her the other day, I said, "I have words now. I didn't have them before but I have them now." God, this is so unfair. Not for me, but for her and for my family and for the other people who have to suffer while we go through this goddamn thing. I miss my uncle a lot. I hear his voice. I wish he was still here. I hope he is watching me and is taking care of me. I hope that he is proud of the way I am going through this, although I can never express the kind of strength he showed after he realized he was going to die. I hate that I have to go through this, and I hate that my family and friends have to watch, and I hate that the people I love have lost other people to this disease and have to watch me go through it, all the same kinds of stuff with all the same kinds of side effects, and know there is nothing really they can do, that they have to just depend on me to tell them how I feel and what the doctor says. And, at the same time, I am hopeful. I no longer believe I am going to die. I truely believe I will live and beat this goddamn thing. And I am grateful that I can appreciate life in a way I never did before. And grateful for the people in my life who love me.

Update - Post Treatment 4-16-2008

I went and had my hydration and anti-nausea treatment, and also saw the doctor. Apparently, he finds me 'genetically interesting' as some genetic testing he did came back and revealed I have a mutated gene which prevents me from absorbing one of the chemotherapy elements which he prescribed (5FU, if you want to look it up). What this means is that I have to be on a very low dose of 5FU and monitored carefully moving forward. He also expressed surprise I haven't been sicker then I am. My blood counts are very good from what he told me and he is enthusiastic. I feel good too. I am tired and achy, but not that nauseated. We'll see how it goes.

AM Pre Treatment Update 4-16-2008

Right now I feel OK. The biggest complaint I have is my extreme sensitivity to cold. I cannot even touch anything cold without it causing pain, which is a problem when removing food from my fridge. I get around this by using potholders as you would use them to remove something hot. Unfortunately, I also cannot eat or drink anything cold, so whatever comes out either has to be heated or let to sit until it gets to room temperature. Hopefully this annoying side effect will go away once a few days pass without me being on chemo.

Today I will go in and have a standard hydration - anti-nausea treatment, get my blood work done, see the doctor, and have my infusion pump removed, and then I am free for a few days.