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...

Ten years ago yesterday was a Saturday. My youngest sister died. She was 42. Earlier this week, a friend was visiting, and she asked a question, and my sister's story, from my viewpoint, spilled out. I had forgotten how angry I was at her. Each of us make choices. Those choices shape our lives. But before the choices, are other factors. My sister was the youngest of three. She benefited from two tired parents, who had experience with two intelligent, curious children. With three, there was always two against one. That continued until we moved to a suburb where there were many neighbors. Biologically, she had a body predisposed to diabetes. She lacked the skills, and perseverance to go to college when she was young. She worked low income fast food jobs. Generally she'd lose those jobs when she worked a double shift and then told off a lazy co-worker. After she was diagnosed with diabetes, it made sense... she had low blood sugar from working hard, and not e...

Yesterday, a friend and I went tour the Frank Lloyd Wright buildings on the Florida Southern University campus. About three years ago, they built a USONA style house (USONA is for United States of North America). I'd forgotten that FLW originally wanted to build inexpensive homes. He used local materials for homes. Here's the information about the FLW Usona house that was just built. Interesting challenges. And they didn't take the short cuts that I would have taken.. it is truly a house of light..

As I've mentioned, the surgical wound/opening/to be scar hasn't been healing fast enough. I thought they thought it would be healed by 4 weeks. The oncologist didn't say when she thought it would be healed. --and that makes sense, everyone heals at a different rate. So I thought it was healing slowly, little/no progress made. The wound was as deep, as long and wider than when we started the wet-to-dry dressing. I was also concerned about the PET scan. So I saw the nurse Monday. It's all good. Wound is healing as expected (just not on my timetable), and the PET scan is unchanged.

Today I hit the high points, consolidating some boxes, wiping down the dirty bits, and generally straightening up. My goal: By the end of the day, I want two filled trashbags, a sparkling kitchen, and clean floors. And there's a paper list, to keep me on task. The walking is helping keep my heartrate down... when I was debilitated last April, my heart rate was racing, with very little effort. I've moved the treadmill onto the porch, so I can walk a couple miles, a couple times a day. -- In theory. So far I've not even touched the treadmill. My three good things for today: Quiet two hours on the computer, nice, slow start to the day. Made a list so I stay on track today. Walking with friends 3 miles this morning.. Soft, relaxing rain. Seems appropriate. Today is the funeral of my roommate's aunt. She died of cancer, after many years of fighting and remission. Whenever he tells me I've got a long future ahead, he's referring to her and his sister...

One advantage of where I live is the many activities. Three days a week, there is an 8:00 walking class... which follows a video and walks (in place in an air-conditioned room) three miles. I've got a fitbit, which helps remind me that I need to move more. Some days, I walk so little that the most I walked in 15 minutes was under 100 steps. Meanwhile, I called the Moffitt today about the non-healing wound. It's been three weeks, it doesn't seem to be making progress. I've got an appointment with the nurse practitioner on Monday. After hitting several drug stores, I found the gauze that I need for the wet-to-dry dressing, and got more tape. I like this tape, not as sticky, so it (hopefully) will be easier on my skin. I'm writing this blog for myself, as well as others who have uLMS (or LMS in general). I want to remember the challenges, how it was. It's getting better. Tomorrow I'm doing Qi Gong. With the new year, I'm making some minor c...

1. Knitting group today. Last week I was the only one who showed up, probably due to the holiday. But I got a lot of knitting done, and had some good hot cocoa. 2. Made progress sorting yarn and clothing. Three boxes gone. 3. I'm getting cable tv... I know... everyone else in the world has it... but they're finally running a really good special. This means I'll need to plug the TV into the wall.... No, none of these good things are about cancer.. because right now... cancer is a small part of my life. (and the grumbly part of it is that I can't swim in the heated pool because of that pesky non-healing wound...NOT a good thing. .. okay, a slowly healing good thing. I guess i'm supposed to learn patience. I've not lived someplace with a heated pool before.. So I've not swum in January before..so I'm not able to do something I've never done... )