Englishgirl in Indiana

So much for that plan! Those few days out of the hospital will have to wait. Around the same time that they started me back on Neuprogen, they also decided to taper me off the steroids. As the days have gone on my fevers are getting worse (104 today) and last night I experienced the same excruciating bone pain that I had when I was taken into hospital back in March. So I spent last night sweating up a storm and having the doctors/nurses frantically adjusting my pain meds. I did manage some sleep intermittently throughout the night and woke up to yet more fevers and the pain starting again. So more blood cultures and pain medication assessment. Fortunately my counts have gone up, not much but a small climb which is good but they still gave me platelets and blood. The doctors made the decision to take my steroids back up, to try and get rid of the fevers, and they’re also going to hold off on the Neuprogen and see if my bone pain goes away. As of writing my last few vital takings of my temp have been good, no temperature but it also seems to come on at night a lot as well so we’ll see what happens in a few hours. The worst thing about it all was that last night my legs were so weak and everything was just too painful they brought me a bedside commode to use. For the first time in this disease I felt utterly dependent on someone else; humiliated at the fact that I couldn’t use a proper bathroom. Anyway needs must and I ended up using it to pee but I sure as hell wasn’t going to take a crap in it and staved off my regular until I could make it to the proper toilet. But it did remind me of how low this disease can bring one and while I’m no prude there are certain base human dignities that it’s nice to maintain. Cancer does not allow for that.

And of that lovely note I want to turn you on to a very cool website called My Crazy Sexy Life and Crazy Sexy Cancer. Great sites to check out. The community was started by a girl, Kris Carr, my age diagnosed with terminal cancer. She made a movie that was shown on MTV and brought a super book out last year that I have devoured time and time again. She brings a refreshing take on her approach to dealing with cancer and it was nice to find someone and thus a whole community of people my age dealing with the disease.

Filed under: cancer, T-cell Lymphoma on July 7th, 2008