My LMS adventure

Yes, that was bad news. But the medication change gives me hope. The bad news on that (it seems there's always a balance of bad/good news errr... positive/negative news) is that I'm eating constantly. Today I'm hoping to get a grip on that.. Drinking more water, walking, and timing my meals (that is, only eating three meals and two snacks at 6, noon, and 6 with snacks written down. Otherwise, there could be a repeat of yesterday where I ate through an entire sleeve of Ritz crackers (with bits of cheese on top). Currently, my left arm is painful. I've knitted too much (didn't know it was possible) and the triceps for fine motor skills is painful when I try to lift the arm. I'm using my right arm to lift my left arm... feeling quite disabled with this movement. I'm icing and heating it, and have taken some Advil for the pain. I haven't told my daughter that the cancer is back. I don't want to be that crisis mamma. From her distance, ther...

Genealogy. I live in a community that has various clubs/groups/activities. Recently a friend started a genealogy group, which I wanted to support. Older people do genealogy. Younger people don't. There are lots of reasons, and I've only got the data points of my life. As we get older, we remember our families and their impact on us. We remember the stories our grandparents told, and wish we had written those down. Sometimes we want to understand how we got here. To me, the frustration is that the names and dates don't tell the whole story. A friend is frustrated that he'll be shown as married once, with no children. The reality is that he's raised three children, though they weren't his. He's passed experience, and love to children, who will pass those qualities to next generations. So the official record isn't a good reflection of what really happened. Another challenge is that only the people who didn't reproduce are not included. ...

After my appointment, the oncologist called in a prescription, and later my pharmacy texted that it was ready for pick up-- almost $300 for a month. When I got to the pharmacy, I updated my insurance information, and it cost about $6. Now how much is the insurance paying for that? (NOTE: these are hormone inhibitors to keep my tumors from growing... not optional medicine) Healthcare is complicated-- even more so than new cars or office supplies. There's the MSRP Manufacturer's Suggested Retail Price, several drug discount programs that may or may not work, the cost to the insurance company, the cost to the patient... rebates, coupons, etc. It is what it is... know how to play the system. Find drug discount cards, and coupons. Check to see if you can get any medications free. The main grocery store in Florida is Publix. My high blood pressure medication and many antibiotics are free through Publix. Some medications are cheaper through the discount program than t...

http://www.ralphehanson.com/2016/01/22/what-kind-of-cancer-was-it-and-why-do-we-care/ Interesting blog about celebrities dying of cancer and whether we should care what type of cancer caused them to perish. When I first found I had uLMS, I was pretty pissed at the "popular" cancers. You know the type, pink products, fund-raising and teams of people showing support by walking several days in a row. There was also the annoyance that I had a rare, aggressive cancer that no one had heard of. So, this is serious. No, really, it is serious. Why does it matter what killed our heroes? Do we want to focus research and funding on a specific cancer because (for example) David Bowie died of it? Do we want a lifestyle to blame? It was liver cancer, he did a lot of drugs, it makes sense. Furthermore, since I don't do drugs, I'll be safe. Substitute Lungs and smoking, anal cancer and sexual practices... anything to make us feel safe. There are a lot of types of ca...

Almost all the lesions are in "L" organs.... Liver, Lungs, Lymph node. Too bad the intestines were mentioned... maybe the actual lesion is on some "L" named portion.

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...

Okay, it is over now. I was worried about the scheduling and transportation of this test. Long story short. Everything ran late. But it was okay. The MRI/PET. Generally they don't bother me. This time my arms were raised over my head in a strange position, maybe they were just tired. I don't know. My arms started cramping, I tried shifting my hands, and other minor changes. Eventually, I started thinking knit, knit, knit, purl, purl, purl. That's the pattern I'm currently using for a scarf. I am not bothered by claustrophobia, so the MRI isn't too bad. I spent hours waiting. I kept thinking about how patient I am. With my knitting or a magazine, I can wait for hours. And I have. A large part of cancer is managing patience. My doctor is very busy. Since I've worked in doctor's offices (though not in oncology) I know that some "short simple" appointments turn out to be long complicated appointments. With oncology I imagine it i...