Well it looks like the muscle soreness is on it's way out, thank God. Was actually able to hang some curtain rods today and cooked my first meal in a long time - seared a Mahi Mahi filet with some brown rice and corn, it was just ok... Actually, the rice was nasty and I'm kinda a fish snob preferring fresh over frozen but hey, it was good to be able to cook again!
I ended up renting on demand "The Hurt Locker" and it was really good, very intense. Kinda makes my situation a little more tolerable being reminded there's guys and girls over there with their lives on the line every day.
Although I enjoyed the movie, I just wanted to document that I had 3/4 of a beer and for the first time in a while I had some pretty serious pain in my back from the alcohol beyond my normal discomfort. I haven't mentioned it in a while but I have the rare symptom of my disease of pain in my affected lymph nodes after consumption of just a few sips of alcohol. That is, when my disease is active is when the pain happens. It's kind of like my own personal PET scan so to speak. There may be other contributing factors because I've had disease in me now for almost a year since my transplant and the pain with beer comes and goes. They don't know a whole lot regarding why it happens but my personal experience is when the pain is there, the cancer is growing. I'll be anxious to see how my required scan turns out before I start the next clinical trial.
Despite this, I'm pretty calm and content. I had a nice conversation with my friend and fellow Hodgkins Warrior Kirsten today and it's calming to speak to someone who is going through the same thing I am. In fact, I'm really grateful to everyone who has reached out to me with support via commenting on this blog or sending me e-mail. It's so nice to hear from people letting you know they care, even if you've never met them... In fact, I've never taken the time to thank my friend Veronica from across the pond but please know Vx that I really appreciate all of your comments. You are awesome!
Tomorrow I'm going to go out and grocery shop for the first time in a while. I feel like I have to prepare for battle coming up and need to "bulk up" in the likely event that I'm going to be feeling not so swell in my stomach from the next trial. If I choose the SAHA trial, 61% of the trial participants reported having nausea. Hell, I forgot what the percentage was but another side effect is anorexia, yikes! To be proactive, I might seek out a prescription for Marinol which has antimetic properties and has been known to give people the munchies, ha! There's another trial I've been looking into called Lenalidomide which has a 35-50% response rate but the big side effect of that one is reduced blood counts and rash. Like Kirsten and I were talking, it seems like nausea is the lesser of two evils as you can somewhat control it but the only way to fix blood counts is through transfusions which I've had plenty and prefer to avoid. Not to mention, when your counts go down, you're suscetable to infection and I don't want to get sick...
Maybe Dr. Younes at M.D. Anderson in Houston has a trial that gives no side effects and has great efficacy...!
I guess the beer has gone to my head too ;)
I'll find out for sure Friday...
6 comments:
I know that not all nausea medicines are the same, or work the same way for everyone. My personal favorite, however, is Zofran. It is about the only medicine that ever worked for my nausea. .... Just a note, in case....
I will be thinking of you at MD Anderson ( parking is 20 bucks a pop) , there is a free lending library and books everywhere and the cafeteria is very nice.... .we sat in that waiting room and saw the same people you will see and yet we have never met....My Chris got good news re the cancer there and I hope you do too...... Loraine
Should clarify the 20 dollar parking was for valet, but since it was a long walk where we had to park and also depending upon the day and time the parking lots fill up we went with the valet parking for ease.. Loraine
Chris, you are amazing. your honesty, your work to achieve serenity, your care for others while facing your own battle, your ability to make your blog into a kind of unique cultural study (i've actually learned a few things about florida, detroit, etc. from your 'piece'). you are doing a heck of a job navigating the limbo and we are all pushing for you and manifesting your health and well-being.
I am a strong believer in the healing power of chocolate chip cookies. If you need them during treatment, I will send you a batch (no beer bread). I know we don't know each other, but cancer patients need to look out for each other. I was given Emend for nausea and it worked well, but is very expensive.
About bloody time, Chris ;0P (JOKE!!)
I left the forum quite a time ago as our lives were, very fortunately, moving away from cancer and reliving it all through everybody else's story made it hard to 'move on' - but, the blogs I was following at that time, I vowed to continue to follow (so, sorry - you're on my stalking list!! ;0) )
as I know how very important everybody's comments were to us on W's blog.
Your blog is fantastic and your honesty is so refreshing - this is an emotional journey and you don't shy away from the down times - I'm a huge fan of yours, Chris - you're one strong character and well, updates of Chili are also important!!!
Hoping for positive news from the trial, freedom from pain and the ability to drink alcohol without being reminded of your condition!!
Now.......go give this Hodge a damn good kicking....Vx
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