My LMS adventure

It's a bit of everything.. My phone failed, and had to be replaced. I went to Family Dollar (I wanted a cheap replacement), and was, I guess, invisible. No one looked at me, no one acknowledged that I needed help, I tried to get the attention of two different employees who were dashing around. After five minutes I left. Ended up at Target, Roommate teasingly harassed me about going to Target after I wanted to go to Dollar General. How do I explain that I don't normally need his permission or help to go ANYWHERE? but I can't drive right now. Plus my damn Jackson-Pratt drain popped open twice while I was out. I changed the way it was pinned to my clothing... apparently it was rubbing the top against something... Ick.... wet running down my leg. Just frustrated. Holidays coming. It's been 11 months since diagnosis. Next month is the 10 year anniversary of my sister and great aunt's death. Which means Dad's death is 10 years in May. And this is h...

When I went to see the oncologist, I started with her ARNP (Advance Registered Nurse Practitioner). She asked if I had seen the path report. I didn't admit that I had looked for it on their website, because I hadn't found it. Benign. She read the report twice. Then gave me a copy. The reason the tumor was hurting... it was dying. Necrosing... in medical terms. When Dr. Chon came in, we discussed the finding. This case went in front of the tumor board, to examine if surgery was the best option. Then the Tumor Board reviewed it again after the path report. Basically, I'm back to Live life full force. Which means my "to do" list is big. I know, rather selfish and shallow of me, but if I die.... my to do list is done. Everything transfers to someone elses' responsibility. So now I'll be an adult, and get something accomplished. Meanwhile, my phone is going away. I was going to kill it off in December (it is 34 months old). However, my ...

You look good. I love hearing others say this. I'm three weeks past surgery, feel sore, creaky, achy. Then someone sees me and says I look good. They're right, and wrong. My hair is growing back out. My color is better. The first few steps are usually sore and painful, but after that, I can move well. Today I see the oncologist. I'm hoping she removes the drain (Jackson-Pratt draining from my lower abdomen). Not sure if I'm doing it right. The pamphlet says to "milk" the drain three times a day for the first three days. I didn't realize I was supposed to stop, so I didn't. I'm still getting drainage. I spiked a fever over the weekend, but it is back to normal now. I should have called, but didn't. I'm kinda feeling like a bad patient. Not reading or following all the directions well. But I look good. For the appointment today, I'm drawing in eyebrows and wearing lipstick. My clothing is simple, but I've go...

Holidays were always special when I was growing up. I was the oldest of three girls. My father was attending college and working full time until I was 8 years old. Each of us got an outfit of new clothing and a toy. Grandparents's gifts would include handmade pajamas or bathrobes, or handmade toys. One year, my grandmother gave me a purse, just like hers. She filled it with chapstick, a small change purse, mints, sweet and low, and candy cigarettes. --all those treasures I'd find in her purse. Perhaps she was trying to keep me out of hers. When Dad was young, he spent his Christmas money buying his mother a dozen blown glass Christmas balls. There was no money for wasteful things like wrapping paper, so he wrapped the box in the Sunday comics. Almost sixty years later the last of those balls broke. They had been carefully wrapped and protected, stored away from the other decorations, so nothing would fall on them. Every year, at least one gift under the tree w...

I received adjuvant therapy (the GEM/TAX chemo) to kill the cancer cells that had not settled and started growing. Here's a study that was done about this type of therapy. Cancer treatment is constantly changing as new therapies are available. This is an example. I'm also very pleased that my education for Health Information Administration gives me the skill to read complex articles like this one. Even bad news is news. We've tried this, now trying something else. Expert Rev Anticancer Ther. 2015 Nov 11. [Epub ahead of print] The role of adjuvant therapy in uterine leiomyosarcoma. Ducie JA1, Leitao MM1, Jr MD1. Abstract Uterine leiomyosarcoma (uLMS) is a rare mesenchymal tumor of the gynecologic tract. Although diagnosed in only 1-3% of patients with uterine cancer, uLMS accounts for the majority of uterine cancer-related deaths. The standard of care for patients with uLMS includes total hysterectomy and bilateral salpingo-oophorectomy (BSO). There are n...

You know that feeling that drivers are too young to drive? Or MDs look too young to actually be MDs? Apparently that is the feeling some park residents have about me.... "Are you visiting?" And just like those young drivers, I feel like saying, "Hey, I'm old enough to do this..." and having heard someone say that--- I know what the response will be.... (not aloud, but still thought...) You might look old enough, but do you have enough experience to do that correctly? I love hearing my neighbors' stories... grown children, grown grandchildren, second marriages, travels around the world. I live vicariously by hearing about their lives. And ironically, I look at some of the 80 year old women power walking around the complex, and I'm jealous. I'm pulling every bit of joy out of these next few days. After surgery, I'll be tired, sleeping and sore. And maybe in 25 years, after beating this leiomyosarcoma, I'll be the 80- something power...

Preparing for surgery tomorrow and the to do list looks like this: clean off the kitchen counter move a couple dishes to the counter so I can reach them. lay out clothes for the next week. (nothing tight,) pack for hospital Wear what I want to wear home. It's all the practical stuff I should have done today. So to procrastinate, I made Jello. So Jello. I bought Jello for this glorious clear liquid day. Lemon jello... sounds good? Okay, I'm wishing I had gotten one other flavor. Love you all. Take care of yourselves. This will work out how it is supposed to. But remember, not all stories have happy endings.

Recently, talking to a friend, I realized that I don't remember the last surgery. I've blocked it out of my mind, or just conveniently forgotten it. I don't remember the pain, the days or nights. I vaguely remember being picked up at the hospital... being happy to see my friend who was bringing me home. Maybe that is best for now. I'm preparing for the after surgery. I'll have the dishes on the counter, so I don't have to reach for them. All the laundry is caught up. I've laid out clothing for the first two weeks. I love my giant t-shirts (2X or larger), which I wear as a housedress when I don't feel well. The mobile is still needing lots of work. I'd hate for anyone to see it right now, but I'm sure neighbors will eventually come in. Everyone has been so kind. Many are offering to bring food. I've been meeting a lot of new people as the Canadians and other Northerners come down. So it will be a quiet week. Today is the la...

Yesterday, I realized just how much of my life I've neglected while I've been sick. You don't need details, but I've made a list of what didn't get done, and who I need to contact to get it done. That seems so simple when I write it. And on the surface it seems stupid that I haven't filed short term disability for the time I've been sick. I've had (just enough) money to keep me afloat, so I didn't need that money (right now). So now I'm back tracking, filling out paperwork, and filing it. Because I KNOW that in the next few weeks I won't have the energy or stamina to do this. If I don't get it done this week, I'll be that much further behind. Procrastination, that's what it is. When I'd rather lie in bed and just watch the ceiling fan go around. That seems silly now. But I've spent many hours doing just that. I just didn't have the energy to sit up.... and I didn't have the concentration to remember w...

I'm so excited. I just signed up for a research study, monitoring side effects of treatment. More details later after I sign the consents and read about it.