I have Cancer.

Those are words I never expected to hear. Heart problems have been the curse in my family. I have back & GI issues so when I ended up in the ER with abdominal pain I figured it was somehow related to those. After a long wait for results of a CT scan, I was called into an exam room. The doctor tells me I have a large mass in my left side. It was about the size of a large grapefruit. I spent the weekend in the hospital & was discharged Monday evening after having a biopsy done of the tumor. Took a couple weeks to get results. Two very long weeks. I knew it was bad.


Leiomyomasarcoma. The journey has begun. Oncology referred me to a surgeon with experience removing sarcomas. My tumor is inoperable at the moment. He referred me to a medical oncologist. The doctor is a nice young lady. I'm going to be taking a trial medication & radiation. I will take the pill daily, Tuesday through Friday. Today I met with the radiologist & team. I will receive treatment Monday through Friday for 5 weeks. A cast of my torso is made & markers made that will allow the radiation to be directed exactly where it is needed & not where it isn't. My left kidney unfortunately will be damaged & eventually be removed along with the tumor. If it all goes as planned the expected surgery will be close to Christmas.

LMS is a relatively rare cancer. There are 3 types. Mine is the least common of the the 3. There isn't a cure. It can be managed. I've read quite a bit about it now. Joined a Facebook support group. Some people whiz through the process & haven't had a recurrence. Others are having no such luck.

10/17/19- I start radiation on Monday. Five weeks of it then in 4 weeks a CT scan will hopefully show the tumor has shrunken enough to be surgically removed. If not then I'll start chemo in addition to radiation.

10/25/19- One week of radiation done. There isn't any going slow at first.


11/23/19- Completed my 5 weeks of radiation yesterday. Plan is to take about 4 weeks to let my body 'cool off' from the radiation. Hopefully surgery before the end of the year.


12/28/19 -- Four weeks of "rest" finished. Have seen the surgeon and still not operable. I've lost about 30 lbs. Will see the Oncologist this coming Thursday. Currently my biggest issue is nutrition. I want to eat but the tumor takes of space.
Sort of like having weight loss surgery.

01/2/2020--Saw the oncologist today. My tumor is inoperable. The tumor wrapped around my aorta. Plan is to go to doxorubicn aka. The "Red Devil" I will be getting it once every 3 weeks IV.

01/30/20--I almost died Saturday. I experienced a complication of my chemo called neutrapenic crisis. I white blood cell count was almost zero and I went into shock. Got out of hospital yesterday.

2/6/20-- Had my 2nd round of chemo. I hope it doesn't affect me the same as it did before. I also got head shaved. There was so much hair on the pillow at the infusion center, I knew the time had come. I had gotten it cut very close over the weekend at Great Clips and it was free. They have a Cuts for Kindness. Saturday someone paid for my cut. So I used the Kindness thing today. There is hope for humanity.

UPDATE:

I go Monday to see the surgeon. I’m 99% sure that he’s going to tell me the tumor can can be removed!! I’m both elated & terrified.

UPDATE:

Saw the surgeon. No more chemo!! I go back in a couple weeks for testing & further exams. He said surgery will be in about 4 weeks so last half of July. I’m to begin conditioning. Exercising & eating better. Expected stay will be 1-2 weeks. They will likely take part of the pancreas, spleen, intestine & probably the left kidney. I am so happy to be headed in this direction.

6/21/2020
Another appt with surgeon tomorrow. I think I will get a date plus a list of pre-op tests. This is a pretty rough one. I have been doing well with walking almost daily or the recumbent bike. Managing to get plenty of protein too.

6/29/2020
July 14th is the big day. The 8th is pre-op tests. The first sign that the chemo is wearing off has shown up. It had completely taken my psoriasis away. Today I noticed that it’s coming back.

7/10/20
Had lab work done. Have To get swabbed for COVID Saturday. Sunday I plan to eat lightly in hopes I can get through the bowel prep sooner. Food on Monday is clear liquids. Monday will start the bowel prep, taking a variety of meds, bathe with Hibiclens that nigh & sleep on fresh, clean sheets & pj’s. Repeat the bath on day of surgery. Tuesday is no food or drink at midnight. Have be at the hospital at 5 a.m. & op to start about 7:30. Yes, I’m still terrified.

7/11/20
Had my COVID nasal swab. Part of preop tests. I’d had one sometime in May I think. One swab for each nare. Those heart awful. The gal who was entering the test into the system told me they only use one swab. Technically that was right, they did use one swab.....for both nostrils! I give the lab tech kudos. She was very gentle. And I can officially say I’m COVID-19 negative. On a pleasant note. My head is now covered with peach fuzz. Still terrified. On a positive note my hair is starting to grow back. I’ve got a whole head of peach fuzz.

7/12/20
Last evening I started having sharp pains at the lower edge of my left rib cage. Took pain meds & slept most of night. This morning it’s worse. I may end up going to the ER but I’m worried it will result in my surgery being postponed. 🤞🏻

7/13/20
Tomorrow is the big day! Surgery is at 7:30 CST. The pain I’ve had is slightly less. I think it is a broken rib. The tumor has caused my left ribs to be moved out of its way & where a lot my pain has come from. I guess they couldn’t take it anymore. I’m going to miss Mara. I’m on here all the time!

8/16/20

Back in the hospital again. I’m not getting enough nutrition & keep losing weight.

10/27/20

Had my first CT scan (post surgery)& the results were clear! I’ll have one every 3 months for 2 years. My labs were good. I still have some pleural effusion in my left lung but I can’t tell it. Also was going to get my feeding tube removed but when the doctor was pulling, very gently, it hurt sooooo bad so he stopped. I go back tomorrow to have it removed under sedation. Also will be weaning off the morphine.

10/28/2020

Today I got my feeding tube removed at last. I was really nervous so I got quite the drug tail. In addition to the meds they use for sedation they also gave me Ativan. They then pulled it & I still felt but didn’t care though I I still cried because it hurt. On a positive note all the terrible pain I was having in my ribs is gone. It must have been the darn tube the whole time. I’m hung over from all the medicine & just want to sleep.

Update: 2-8-21

Scans thus far have been clear!

Update: 5-4-21

Scan was clear again! I’ve regained almost all of the weight I lost.

Update: 11-23-21

Scan & labs are good. I’ve now become a NIDDM (non-insulin dependent diabetic), likely due the rapid weight gain & only having half of a pancreas. Sucks to have to watch what I eat now. It was great to be able to eat all I could get. It’s ok. I’m now watching carbs (can have up to 200) & staying away from ice cream, candy, regular soda, etc.. I’m on metformin ER 500mg/day & my fasting sugar today was 113! Best so far. On the down side I have double hernias. These are from my abdominal incision. Eventually they will have to get repaired surgically.