A Mad Cancer World – guest post

This one comes from a young woman diagnosed with AML, acute myelocytic leukemia.  She writes at Girl With The Swirl

While I’m not caught up in ad world, I’m trying to take more small walks. Here’s the current predicament, which is pretty minor in the grand scheme of things. I’m pretty sure I have muscle atrophy from completely suspending all my physical activities I used to do 8 months ago + 2 1/2 weeks of solid bed rest have now left me tired and sore from being in the same positions. It’s like my bed has a crater and I’m a moon unit officially parked on it. So in my attempt to get rid of my muscle soreness I try and walk, but I get quite tired from lack of activity, so I can’t push myself a lot otherwise the artery in my neck feels like it’s going to burst. Lol what a joke I feel like right now. I could start physical therapy when I have built up enough stamina, says my oncologist. However, since I’m pretty familiar with how to work out, stretch, and build muscle I can do it myself. I just need to be extra slow working into it.

I had a good phone conversation with a friend I made in Moffitt while I was there in August and September. We both shared our “war stories” of hospitalization in the past week. I completely hate we’ve (ESP they) gone through rough times dealing with our health provider staff and system. It’s such a frustrating, helpless feeling when you feel things are going wrong with your treatment (which has been rare in my case) and you have no impact on changing it, or you’re too damn fed-up with it all, you have no choice with it but to go with the flow. I can’t even describe the level of stress a patient feels walking into the hospital some days. You’re thinking about annoying problems like the previous paragraph, to someone next to you telling you they’re terminal, tracking down insurance and providers regarding billing errors, what your blood levels are, am I going to have an 8 hour day here, am I eating enough, do people think I’m just on vacation and I’m not really sick, what if cancer ever comes back, how long is this going to take for me to get back to normalcy? I mean, you name it, I think it goes through your head. I’m currently trying to not freak out on my insurance company who is trying to dodge payment and pass onto me. My parents have been a godsend about this issue. I would be totally clueless with how fogged up I have been on medication to figure this all out. I’m so glad I got that paperwork in order days after I was diagnosed that made them legally allowed to handle this stuff with me. They’ve been here a month. Can you believe that!?

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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