My LMS adventure

I don't talk about this much -- just to the right person at the right time. Lately, I've been thinking about my life... and an important part of it. I've been sober since September 28, 1983. Here's a list of what I've accomplished stone cold sober.... I've had a child out of wedlock (with an uninvolved partner) I've raised that child, Got a Bachelor's Degree Worked in a health care setting at the Director level Opened a new hospital with an amazing team of professionals, Liquidated my assets and moved to a retirement park. Have been diagnosed and treated for uLMS, so far: 3 types of chemo, radiation, and disability retirement. So many of these could make someone drink alcohol. I've made it through this. If you want to stay sober in crazy circumstances, you can do it!!

Okay, CT results from last Thursday. SMALLER.... all the lesions are about half to a quarter of the size they were. The liver lesion is dead, and slowly being carted off by my body's trash system. The spinal vertebra shows no growth; the adrenal is smaller (first time!!) and the lung lesions are shrinking. SMALLER. Other good things? I found the clothes basket with the missing underwear which now doesn't fit because of my 40 pound weight loss. No, I wouldn't recommend this diet. Another good thing? I had the energy to look for and find the laundry basket. -- I've got my appetite (and hair) back with this maintenance treatment of Yondelis. Ah, I'm pulling out the tape measure, and then ordering my fav underwear from Hanes.com. Heck, I may even order some yoga pants since all I have are black.....and too big (fortunately they have drawstrings....so they fit any weight.)

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...

Some background about me. In January, 2006 my sister died, and I was helping my father discard/donate/sort her belongings when he died in May, 2006. Both were packrats. I proceeded to give away to basically anyone who would take, their belongings. Dad was a generous man.... he would have enjoyed the (uninstalled) dishwasher going to his neighbor with 5 kids. Or the Tonka toys being given to each of the kids that helped. At one point I had a list: tools, toolboxes, cars, etc. My father's two bedroom/ one bath house packed to the brim, and my sister's one bed/one bath --with full basement house packed with romance novels and scrapbooking supplies. At my father's the upstairs was a pleasant surprise, a neighbor needed some spare cash, and Dad hired her to organize/ cleanout the second bedroom. Another shock was the freezer in the basement. He had bought it less than two months before, and it was filled with seafood. Myra, a friend since college, was around when I...

It's like a high school Logic problem. All sarcomas are cancers but not all Cancers are sarcomas. I found a lovely explanation: A sarcoma is a rare kind of cancer. Sarcomas are different from the much more common carcinomas because they happen in a different kind of tissue. Sarcomas grow in connective tissue -- cells that connect or support other kinds of tissue in your body. These tumors are most common in the bones, muscles, tendons, cartilage, nerves, fat, and blood vessels of your arms and legs, but they can happen anywhere. Although there are more than 50 types of sarcoma, they can be grouped into two main kinds: soft tissue sarcoma and bone sarcoma, or osteosarcoma. About 1 out of 100 cases of adult cancers is soft tissue sarcoma. Osteosarcomas are even rarer. Sarcomas can be treated, often by having surgery to remove the tumor. Because sarcomas (like my Leiomyosarcoma)are rare, it's harder to be diagnosed. Generally, a patient has surgery, the tumor is sent t...

I go to Moffitt Cancer Center's Infusion Center for chemo. So far, I've been twice. First stop is the lab to get blood drawn. If I'm running an infection, I can't have chemo. Then upstairs to the fourth floor for infusion. I follow the footprints to the end of the line, then wait for a registration clerk. This generally only takes a couple minutes. The first question is my date of birth and name. They check me in, hand me a wristband and ask me to verify the information. Then he/she fastens the wristband, and ask me to take a seat. The waiting room is frequently full. There's a lending library (lots of Star Trek novels, but a good assortment of everything.) Several puzzles are started on nearby tables. There are some comfy chairs/recliners for those who want to relax a bit or just don't feel good. Generally someone is curled up in a blanket, and my heart goes out to them. I know that someday soon I may feel the same way. There are computers wi...

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 chemotherapy was very peculiar, something that makes you feel much worse than the cancer itself, a very nasty thing. I used to go to treatment on my own, and nearly everybody else was with somebody. I wouldn't have liked that. Why would you want to make anybody sit in those places? Maggie Smith Read more at http://www.brainyquote.com/quotes/quotes/m/maggiesmit415746.html#iLb0Hz4bGfLuRFrl.99 1/12/2015 Nothing is scheduled yet.  But the first conversation with the oncologist makes this a real possibility.  I've made a list of people who might be good company for this.  I plan on doing this alone for as long as I can.  I live near the hospital, -- literally within walking distance.  Despite agreeing with Maggie Smith, I understand why having family and friends around is important. Someone is watching you... who knows you.  They call for help when needed.  They can distract from the waiting times, the cold food, the discomforts...

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...