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Showing posts from August, 2016

Article about Long Term Survivor of ULMS.

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..

Next stop --- Cardiac ultrasound to test ejection fraction of Left Ventricle

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.

Red Devil: Dose Four

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 due to surgical complication from Pancreatic Tumor surgery

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

Definition of an optimist.....

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.