Tonight I go to sleep without taking the two pills per night I've been taking for the last three years that have basically kept me alive. It hasn't hit me yet or maybe I'm just battle weary but I'm moving forward in my life with cancer growing in my body and there's nothing I can do to stop it for the next 30 days or more. Kinda unnerving as I write this just thinking about it but I think it's really going to hit me when I wake up tomorrow morning with the pain I've been waking up with over the last 3 or so weeks. I call it the tin man effect. It's like my body is locked up and every move I make is painful until I'm able to take the meds to help me move like the tin man used oil to help him move. Now that I've stopped the RAD001, the drug I've been taking to keep the Hodgkins away the last 3 years, I wonder if the Hodgkins is going to grow even faster now that there's nothing to slow it down. I wonder if the pain is going to get significantly worse in a short period of time...
This is just one of the many things that are crowding my mind right now. So I wake up tomorrow to face the day with uncertainty and a healthy amount of fear while I do everything in my power to drink in the gift of life and be thankful to be alive.
On the other hand, perhaps the benefits of not having to take this drug anymore will counterbalance the potential "exposure" issues and back pain with hopefully having more energy and finally getting my appetite back! Throughout my time taking this drug, my energy level has been 3 to 4 out of 10. In other words, I was pretty much exhausted every waking hour, I just learned how to mask it I guess. Can't wait to crave good food again! I can count on my one hand how many times I cooked a proper dinner for myself over the last year. It was either scavenging or getting a carryout. I had no desire to deal with food, going out to buy it let alone preparing it. The main culprit for this was the Everolimus or RAD001, yet it kept me alive...
I'm thankful for the 3 years despite these two major side effects. I think anyone who has dealt with cancer would trade being tired and having no appetite for being cancer free.
Part of me is excited to see if I can do better with the next trial. I can't get greedy and expect things to go perfectly and get great results with this next trial...
I guess it's ok to dream though right?
With that said, I'm out...
2 comments:
Hey Chris, I've followed your page now and then since my treatment in 2007 and I try and check back sometimes to see how you're doing! Sounds like life has been tough for you and your family but that you've dealt with it as well as anyone could. So sorry to hear the cancer has returned. Fingers crossed for you that you feel the benefits of the break from the last drug and that your next treatment goes well. Thinking of you and of the other hodge warriors. Katy x
Oh Chris I have no words - everyday I get searches on my blog for HL - I am always thinking of you and your battle - you are a true inspiration to those with this obscenity of cancer Loraine
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