My LMS adventure

Again, I had someone drive me to the infusion appointment. We were running a bit late, hit the lab about 5 minutes late, The ARNP appointment was the same time as the lab. The nurse and I had a great conversation about Pokémon Go. We're both getting excited about the game. I'm feeling good. Well, let's clarify "good." I'm tired a lot, but have days where I get the dishwasher unloaded. About half the time I start laundry, but finish it after a nap, or later in the day. --- and the laundry is piled on my bed, so it's not really done. When I'm sitting on the couch, I feel good. I'm eating well, can still drink coffee, and have stable weight. The infusion went well. My roommate and I ate at Cracker Barrel for lunch, then I went home for a nap. The steroids keep me moving when I'm awake. I got some cleaning done. We moved into this home almost a year ago. I'm still finding places and sorting what needs to stay and what nee...

I've had my second treatment of Doxyrubicin (aka the "Red Devil"). I'm fatigued, exhausted after unloading the dishwasher. I sleep a lot and barely answer the phone. Thursday, I had a doctor's appointment with supportive care at 8:45 a.m. I managed to get there, and look good, but took a long nap when I got home. So there's not much going on here. I'm tired. I sleep. Occasionally I can't sleep at night (like tonight) because I've slept all day. Is the ache in my back from sleeping too much? Sleeping in the wrong position? Don't know. It just aches. I can take a pain med, but that makes me constipated. So do I want a dull ache now or a more painful time tomorrow? This is the point where it seems like life will be this way forever. My belly is bigger due to... the tumor? the fat? the lack of exercise? Don't know. At least I kept my larger pants so I have something to wear. I'm constantly cold in the house, because room...

Link to National Comprehensive Cancer Network guidebook --- written for patients and families. This booklet has a great flow chart and explanation for various stages of general sarcomas and treatment options. Great place for someone who wants answers, and can filter out what doesn't apply. The entire booklet can be overwhelming.. too many choices at once. But, it is a good place to learn your questions. Another sarcoma blog: Sarcoma blog - "Coping with the Big C"

I've learned to be flexible and prepared for anything. Friday was a great example of why this works. There was a scheduling glitch. I wasn't scheduled for "chair time" at the infusion center. So labwork at 8:00 a.m., appointment with ARNP (Advanced Registered Nurse Practitioner) at 8:45 a.m. When I saw the practitioner, the office started getting a chair scheduled. It worked out that there was time for a quick breakfast at the cafeteria (glorious biscuit/gravy and a side order of cheesy grits.) Then off to the infusion center. I even got a private room for the infusion (that's a first, I've enjoyed chatting with the other patients when I shared rooms). We managed to get out of there before 12:30 p.m. So the day wasn't what I thought it would be. I was able to get the infusion. --- and avoid a second trip on Tuesday (which is my birthday). Red Devil is interesting. My hair was falling out, so I shaved it. Status report; toenails are ...

My hair still looks good to others. I see the pile of hair by my sink. The final task is to get a passport photo while I still have hair. Then I can shave it. Oh, and I need to get some sunscreen. I'm still able to get things done. I have been doing laundry and outside activities. Although it takes three times as long to get anything done.

Today I went to the Tax Assessor's office, and changed the address on my driver's license. I know, I should have done that months ago. I also dropped the organ donation designation. I got my first driver's license in 1977. I've been an organ donor since then. But cancer changes things... and LMS changes a lot of things. Taking an organ from my body would quite possibly transfer LMS cells to the recipient. I was an organ donor almost 40 years. I donated blood for years. It just seems wasteful to put a perfectly good heart or lung or liver into the ground. Except my heart, lung and liver are not perfectly good.

Below is a link to the original article. I realize that links don't live forever, so I've copied the article. I am currently on Letrezole.... and having bone pain. --Although that is something I'll be discussing with the doctor at Friday's appointment. Remember there are no easy answers... so a way to prolong life, also has side effects... pain, and reduced bone density. I'm grateful that I've drank as much milk as I have during the past decades. Hopefully, that will help strengthen my bones during this treatment. This also shows how treatments can cross from one cancer to another. I'm not sure there are any official treatments for my cancer, it is just too rare... so we keep trying new and interesting treatments. Washington Post Article about breast cancer and Letrezole Extending anti-estrogen therapy to 10 years reduces breast-cancer recurrence, new cancers CHICAGO — Researchers said extending hormone therapy to 10 years reduces the risk ...