My LMS adventure

Link to article Some of the grim statistics Sharon mentions are still around. Initially, my research showed that ULMS stage 4 (mets to distant organs... i.e. liver, lungs) has a 14% survival rate at five years. With the new treatments, and the new clinical trials, survival is improving. I figure I've got another two years..

You remember anatomy and physiology? Human hearts have four chambers. A normal left ventricular ejection fraction (LVEF) is 50 to 75 percent. Other tests used to measure EF include cardiac catheterization, magnetic resonance imaging (MRI), computed tomography (CT), and nuclear medicine scans. This is the chamber that pumps blood to the rest of the body (as opposed to the right ventricle which pumps blood to the lungs to get oxygen). They test this on Red Devil patients because the heart muscle can be damaged, and 10-15% of patient may have heart damage (or may suddenly die due to heart damage). Friday I go for a cardiac ultrasound. Today I feel energetic. I'm not getting much done, but I feel energetic.

Interesting day yesterday. Lab appointment was 7:15, wow that's early. The medical assistant couldn't get blood return from my port. So he pulled blood from my arm, then sent me over to a nurse. She injected TPA into the port. It dissolves.... whatever might be blocking my port. Wait an hour before taking it out. There was time to head down to the cafeteria (which is being remodeled)... this is the Summer, and the slow season in Florida. Moffitt is done remodeling the Infusion Center waiting room. They started the cafeteria a couple months ago, and have now moved all the serving line to a small area that was just vending machines. It will be wonderful in a couple months. I went to see my ARNP, but got a different ARNP. All is well except a concern about my blood glucose which has been high a couple appointments in a row. We discussed future treatments, as well as a possible break in treatment when I'm going on a cruise with my friend. I'll get a cardiac u...

My uncle died this morning. Three weeks ago he was at a NASCAR race with my mother. Two weeks ago, he checked into a hospital for a Whipple Procedure. He had a tumor on the head of his pancreas. The surgery went well, except for unexpected bleeding and he was taken back into surgery the following day to correct that. He was up and walking yesterday. There were problems. Early this morning, Mom texted that we were losing him. Later she texted that he was gone. So many thoughts and emotions raced through my mind. I doing errands when I got the news, and started crying. As he aged, my uncle looked more and more like my grandfather. I thought of the many times my uncle was there for his own grandchildren. They were homeschooled, he was flipping and renting houses. Many times they'd shadow him as he was fixing a house, solving problems, showing how math was important for plumbing and carpentry. He was so very patient, and just wonderful. When I finally went to bed, I co...

For Christmas last year, my mother got me a two year calendar. I'm half way through the first year. At the time I saw the calendar (like so many that I've carried over the years...) I thought, "Dang, she's an optimist." You know, she might be right... I might be around long enough to finish this calendar. I've already got events listed in December, 2016. Here's to the optimists in my life... that keep me going. Even when I'm sore and grumpy.

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...