My LMS adventure

At this point, only my roommate, my mother and one friend know what I'm going to tell you. First let me apologize to all my friends for not telling you personally. I just can't do it. This disease spreads. It is rare and aggressive. I'll be fighting this for the rest of my life, whether I'm in active treatment or not. We've known there will be recurrences. The November surgery was due to a PET scan that showed a mass which turned out to be benign. Two days ago, I went for a CT/PET scan. Yesterday I got the results. There are new lung lesions/nodules. Something is happening with the liver (previously it was identified as scar tissue, now it is active). There are suspicious spots in my intestines, but with the healing (at least it shows on the PET scan, it doesn't seem to be getting smaller). There's activity within a neck lymph node, which (like the others) was there in October, and is now larger/more active. Several months ago, my oncologis...

One advantage of where I live is the many activities. Three days a week, there is an 8:00 walking class... which follows a video and walks (in place in an air-conditioned room) three miles. I've got a fitbit, which helps remind me that I need to move more. Some days, I walk so little that the most I walked in 15 minutes was under 100 steps. Meanwhile, I called the Moffitt today about the non-healing wound. It's been three weeks, it doesn't seem to be making progress. I've got an appointment with the nurse practitioner on Monday. After hitting several drug stores, I found the gauze that I need for the wet-to-dry dressing, and got more tape. I like this tape, not as sticky, so it (hopefully) will be easier on my skin. I'm writing this blog for myself, as well as others who have uLMS (or LMS in general). I want to remember the challenges, how it was. It's getting better. Tomorrow I'm doing Qi Gong. With the new year, I'm making some minor c...

. ...In fact, many people don’t realize that not all cancer can be cured. When I explain, people often try to cut me off, telling me not to be negative, as if denying the reality of my disease could somehow protect me. I am an incredibly positive, optimistic person, but wishing won’t make my cancer go away any more than it will make everybody understand what it means to be incurable. So much explaining is exhausting.” — Teva Harrison. Follow her on Twitter and visit Drawing Forward You know what you know. More importantly, you DON'T KNOW WHAT YOU DON'T KNOW. I run into this a lot. The media covers the advances... and I love hearing that there's a pill called Glevix that knocksout GIST. We're making progress.. but there are over 100 types of cancer...I have to be an expert on my type of cancer. Here's what the average person needs to know: * How you can reduce your cancer risk. * Cancer is a simple word covering a lot of conditions. * "Be...

Today I got both chemo meds:  Gemcitabine and Docetaxel.  I thought they'd be administered at the same time.  I should have asked.  Not that it mattered.  Ninety minutes for the Gem and sixty minutes for the Tax.  I did get to knit this time... thanks to Joni in the lab who installed the IV when I got my bloodwork drawn.  I'll ask for her next time.  And the extra hour gave me time to watch Futurama, a Bones re-run (the one with the dead polygamist... but that's another blog...)  and finish (aka run out of yarn) for the gray turban.  (we'll see if it fits or if I need to modify).  I cast on for a black beanie hat in Knitpick stroll black.  It's stash yarn that needs a good light to knit... and the infusion chair is perfect. Plus I like the circulars for the knitting.... rather than the long straight needles.  No side effects, pleasant company (a woman and husband chatting in the next chair.  Overall a good ...

The PET Scan was interesting.  Back in Indiana, in the dead of winter, I'd go to the tanning bed.  I only went a few times total. But the best part for me was the meditation.  The fan motor whirring, the chance to relax and empty my mind... Quite Zen and relaxing. The PET Scan was like that.  After registration, I was given an injection of stuff... this came in a cute lead container.. even the syringe case had a lead shield.  Then I sat for an hour, waiting for the stuff to circulate and accumulate.  (I'm guessing what it was doing.  I was knitting... ) Then lying face down on the CT imager (big white donut)... I see why they ask if you are claustrophobic.  The room was very cold, but they covered me with blankets. Moffitt is wonderful about giving blankets... even warmed blankets in some departments.  So I lay there just clearing my mind.  After several minutes, they flipped me over, and did the other side.  Then a differe...

ready for a new challenge?  What a roller coaster.... After several episodes of severe pain, my gynecologist and I decided to remove my uterus.  The original diagnosis was fibroid tumors, which are painful and annoying but benign.  The Internet headline after I scheduled the surgery?  "10 most unnecessary surgeries"--- and hysterectomy was #1. The Monday after surgery, the pathology report came back, and my surgeon called to discuss the results.  I have leiomyosarcoma in the removed uterus.  Nothing moves quickly in this kind of situation.  Two weeks after surgery, I met with my surgeon, (the wound is healing well).  Three weeks after surgery, I'll be meeting with a specialist.  I've spent two weeks researching the diagnosis.  There's good news (it was contained).  There's bad news "LMS is a rare and aggressive cancer."  Tomorrow I meet with the specialist.  We'll run tests, then formulate a plan.  From the...