My LMS adventure

In 2014, I had surgery on December 23rd. I was discharged from the hospital on Christmas Day. The following Monday I got a call from my surgeon. She kept apologizing, and told me the pathology report showed Uterine Leiomyosarcoma. I had a flashback to medical terminology... Leio- smooth, Myo- muscle, sarcoma - Cancer. Later after some Internet research I realized why she was apologizing. "Rare and aggressive" were the two terms used to describe this. I dug until I found statistics... how long will I live? I reached out to others with this disease. ---Even found a few who were diagnosed at the same month I was. My surgeon had done a residency with a gynecology oncologist, Dr. Chon. She had made phone calls to Dr. Chon, and gave me the phone number to make an appointment with Moffit Cancer's Women's Center. And that's how this adventure began a year ago. What a wild ride it has been. Everything changed... Where I live, where I work (ummm, I don'...

It's been a week since I started caring for the open hole in my abdomen. I've changed dressing twice a day. Here's how I'm coping with some unexpected situations. The surgical pad wicks the moisture away from my body... however, that means my clothing gets damp. So I'm wearing dark pants/jeans.... but I'm also putting clean dry washcloth over the pad, to gather more moisture. By the way, pouring Hydrogen Peroxide on cloth removes blood. Not that there is much blood on the washcloths... but enough that I don't want them stained. It's the little things I do that make it better. I'm walking more. Went to a movie today... The holidays are here. I'm enjoying the lights, the music and the movies. 3 good things: Finally got to see the Star Wars movie. Got out and walked in the sunshine... glorious day (I live in Florida...) Planned the next few days... lots of cleaning and organizing. Room by room. I want this place to feel like h...

My mother sent several Christmas presents... and while I was on the phone with her, I got to open them. Knowing my current situation with the cancer, and the healing wound, and all the chaos of the past year... she sent me a two year calendar. That is optimism!!

I'm feeling fantastic. I didn't realize how tense I was over these popped stitches, until after I met with the doctor. Short version: typical complication, here's how you'll care for this type of wound. They removed the drain... which was connected to what seemed like 10 foot of hosing... I need to weigh myself and see if I weigh less without the tubing (just joking) So without the drain (I've got a Band-aid over the site) and with the new wound care instructions, I'm back to doing everything (except lifting and driving) I'll heal another week before driving. So now, back to walking, cleaning and organizing. I've got a few stray holiday cards to send out, and Life is good!

NOTE: this is mostly a whine. Sorry. Feel free to skip it. I have no idea how today is going to go. I need to get to Moffitt for an appointment with Dr. Chon. I still can't drive. I posted a request for help on Facebook, an acquaintance responded. I think she'll be driving me there, I'll have the appointment, and my roommate will pick me up after work. The last message was she was looking at where I live to see if it is hard to find. OR she won't be able to do it. I've got a neighbor who can drive me, he'll stay with me for the appointment, then drive back. Although, I'm seeing the oncologist/surgeon because I've popped some stitches. That shouldn't happened 4 weeks after surgery. I think there is infection behind the intact stitches. So they'll be looking at it, cleaning it out, resuturing it, and.... maybe keeping me-- depending on --- well, that's my fear. I need to admit that I've still been using the pain med...

1. I'm emptying a box of papers/paperwork, and filling it with clothes to donate. 2. My goal is to organize and keep only the clothes I love... because I don't have room for the ones I don't love. 3. Quiet day to play on the computer and watch the golf carts drive past (so many of them are decorated... they are fun to watch...)

I've got a binder (basically a medical girdle) that my roommate scolds me for wearing. He relates it to how his ankle became weak after wearing combat boots for 20 years. I tried to frame it like a cast for a broken leg, needed for a time, then not. I'm four weeks past surgery. I've got allergies, and a bit of a cold. Coughing hurts. Just now, I went into the bathroom to take a shower, and noted that my panties were damp in the front. Then I took them off. The topmost section of the surgical incision is open, barely open, maybe an eighth of an inch. So I added some gauze, put my binder on, and am waiting for roommate to get home. This can't be good. But isn't bad... just ... awkward. I've been weaning off the pain meds. So I took one. Just because. That's probably the wrong thing to do. But it made me feel better. UPDATE: Roommate agrees that it is open. I'm also running a fever. We're going to call the oncologist in the mornin...

Here's link to the article: The average person thinks that problems are simple. Cancer is not simple. First it is a generic term for a wide variety of diseases. These diseases have different origins, different locations, different treatments, and different prognoses. We've made progress in some types of cancer... Testicular cancer was a death sentence once. Twenty percent of men with testicular cancer still secumb to the disease. But the treatment is radically different and successful since the clinical trials in the 70's. Yes, cancer can be gone... But it is likely to return. This is what the average person doesn't understand. Each cancer patient knows that their next scan may find the recurrence. We live with this possibility. The average person thinks we are cured. We had it, now it is gone. I hope President Carter lives a long, wonderful life. He has been an amazing man, an example at a time when we really need an example of graciousness. I...

As I mentioned in a previous post, I've got a Jackson-Pratt drain (aka JP drain). This drains cranberry juice colored liquid out of my abdomen, out of the spot where the tumor was removed. At my recent MD appointment, I was hoping the drain would be taken out. But now I have goals. When the daily drainage is less than 50 cc/ml per day for 3 days, I can call the MD, and get the drain removed. Meanwhile, I'm draining it several times a day. I'm tracking the output. Originally, I was tracking on the sheet of paper they gave me. Then I ran out of space. Now I'm tracking date/time and output on an envelope. Soon I'll need to start a new sheet of paper and will use a real sheet of paper rather than whatever is lying around. Okay, I hope that was boring enough to get the casual bystanders bored. I don't like this, it seems to be draining a bit of pus from around the tube hole in my abdomen. I've been using pads (actually panty shields -- never thoug...

Went with a friend to the grocery store today, pushed myself to walk further than I felt comfortable. Monday I need to start back at the Walk Fit class at the clubhouse. I've got a treadmill, maybe I need to drag it inside and hook it up. I sit too much, and am worn out. I need to walk more, exercise more, and sit less. Heck, even standing is exhausting. When I'm going out to a restaurant, or store, I find myself asking for a chair. Generally, there's a chair or two at the front of a store. Even sitting still is not comfortable. So I need to push myself, and get more active. Because I can't be less active without major problems in the future.