My LMS adventure

Two years past diagnosis and initial treatment. Third round of Yondelis finished yesterday. Feeling good. I was able to feel the large liver tumor, there's little there (including no pain). I've got a CT scheduled to find out if the liver tumor is going/going/gone. I've been very weak. Recently my resting heart rate, after walking a few feet, was 129. Not good. I need to move around, so I keep healthy. I've been walking with a cane, walker and (at the hospital) wheelchair. Nesting: I've been nesting.. curling onto the couch, playing on the computer, knitting, sleeping, watching TV, eating and drinking. This has been BAD for me. SO I'm now standing up on a regular basis.... I am at least staying awake during the day.... so I am sleeping through the night. I'm realizing that eating is huge. When I eat breakfast, I can move through the day... My reserves are down that far. I've lost a total of 45 pounds in two years. Twice I've los...

Last week was interesting. I had been in severe back pain for several months. I got a PET/CT scan, and sneaked a peak at the results. Back pain was due to new mass on vertebrae. I had worked with pain management and started taking Gabapentin/Neurontin, but started stumbling and falling. I fell completely to the floor three times, and started using a cane. Last Monday, I went to see my oncologist to get the results. On the way into the hospital, I asked for a wheelchair...I realized I couldn't do the long halls and stay on my feet. After talking to me, hearing about the falls, and watching me walk, my oncologist pulled a neurologist into the room. They convinced me to be admitted. Their concern was the falls, which could cause damage to my spinal cord. I had lost about an inch of height due to the compression of my vertebrae. The report from the scan: Liver tumor is significantly smaller, lung lesions are larger. No evidence of tumors in neck at lymph system. There's a s...

Tomorrow morning, I start with Doxirubicin infusion. I'll be getting it every three weeks. The oncologist didn't mention how long I'd be on this. This medication has much research, since it started out with breast cancer. There are now more effective treatments for breast cancer, just as there will be more effective treatments for LMS in the future. I'll be losing my hair. (so I saved some money by not trimming my hair. ) The goal is no longer to cure, but to control the uLMS. It spread to the liver (9 cm X 9 cm x 6 cm.) I'm avoiding wearing belts... it just makes my stomach uncomfortable. It seems that a small amount fills it. When I suck my abdomen in, it feels full... and awkward. According to my oncologist, there are still some options after this treatment. Meanwhile, I have an appointment to pay for cremation. Then when the time comes, everything will be handled. I haven't had a TV for several years. The technology changed, I'm ...