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.


9-10-24
Saw Oncologist & had labs & a CT. All good. After my next 6 mo dr/scan in March I will drop down to yearly for 5 years.

Birth parents found!

My ex-husband was adopted at birth. He never wanted to find his birth parents. It wasn't until our daughter has grown up that it seemed important.

For several years my mom had a theory that an aunt of his might be his real mother. She (my mom) died a couple years ago without ever knowing for sure. My daughter & I have tossed around how we might determine the answer. In the meantime, I got interested in deeper genealogy and did the Ancestry DNA test. Then my daughter decided she wanted to do it also. We thought it might shed some light on our theory.

In prep for the results I made her a family tree with her adoptive family as a starting point. When we got the results she actually matched a set of her great great grandparents. Actually she matched with someone whose shared the same set. Anyway, we thought we were on the right path.

Then as I learned more about how the DNA measures work and looked at her matches I noticed she had 20-25 matches that had a common surname. One match was quite significant and had to be rather close in relationship. Eventually we found an adoption searcher who has a rare set of original birth indexes for the state in question. For $300 she would tell us the maiden name of the birth mother and last name of the supposed father. We felt it was worth it. By morning we had our answer. It was not the aunt.

The mother's maiden name was listed as Ledd, father's last name as Marchian. So I started looking for families with the Ledd last name. Turns out that name if very uncommon. So I thought maybe it was transcribed wrong and tried Ladd instead. Yes, that was it. So I searched the genealogy sites and found a possible couple with the names. I put them in a new family tree. I got a new set of matches to the maternal line. But the common name from the previously mentioned group wasn't from the mother. Therefore had to be from the father.

With the '2nd cousin' range match, I was able to determine that this one couple had to be my ex's grandparents. That left me to figure which one of their sons was the father. One was deceased, one out there somewhere and I found one on Facebook. This one jumped out at me. He looked like my ex. Alot!. I continued to search the internet. I found a lady who had posted on a genealogy forum way back in 2001 looking for one of the brothers. What caught my eye was her last name. It was the same as the 2nd cousin match. So I found her on Facebook too and messaged her. Her profile pic is an old photo of her as a young girl. She looked just like my daughter at the same age. Turns out the fellow on Facebook is her father. She had also been adopted and was at the time searching for her dad. Also turns out that the 2nd cousin match is actually her son.

During the same time, I was working at making contact with the birth mother's family. It worked out quite well as I contacted what turned out to be a great grandson of the birth mother. When I messaged him, he happened to be on the phone with his mother, a granddaughter to the birth mother. She wanted to speak to me, so I called her. She was very emotional. She had been raised by her and told me she had always hoped her baby boy would look for her. A few days later, the sister and I texted back and forth. I got a photo of his mom and he also looks like her. The sister seemed skeptical for a bit. She said she had a couple aunts who'd also given babies up to adoption and maybe my ex was one of theirs. My ex had been told he had 4 siblings and their father was in jail when he was conceived. The sister confirmed that her dad indeed had been in jail at the time. She said she remembered a man staying with them for a little while, when she was about 8. She said his name was Carl. Her age would be in the right time period and I asked her if the name might be Carrol. She said yes it may have been. I sent her a photo of the fellow from college and she said that it looked like the same guy.

So I was sharing this with the other lady. She in turn told her dad about all of this and sent some photos. He said it was interesting. A day or two later he told her he was the father. But it was all a shock and he needed time to gather his thoughts.

So the lady who's profile photo looked like my daughter is indeed her aunt! My ex-husband's half sister. I had an extra DNA test so I sent it to her so we can confirm. Both families are happy.

The sticky part is we still need to tell my daughter's dad. His adoptive parents and grandparents are all dead now. He really doesn't have much family save an adopted sister and an uncle and two aunts. So now he has the chance to have a dad again. I really hope he is open to this wonderful opportunity!

There's been alot of coincidences. The new half sister
s name is nearly the same as mine. We are in the same profession. That's just a couple.

So the ex had a total of 6 siblings, two have died. But he has a brother and sister alive from both sides. His birth mother is dead. I hope he will be happy to know he wasn't unwanted by his birth mom. She wanted to keep him but her husband said no. So, mother nature decided to make sure he wouldn't forget it. My ex was born on his birthday!