A lot of folks have reached out to see if I have found out much about what the next step in my cancer journey will be. I would like to know too! I mentioned before that I had some growth in one of my tumors in my pelvis when I had my scans in November 2025. I asked my local oncologist (whom I really like) if I could get scanned at 3 months rather than 6 months since LMS tends to just explode and run wild when it decides to activate itself. For new friends, LMS stand for Leiomyosarcoma. It is a very rare cancer than affects about 10 people in a million with cancer. Unfortunately, treating it is like playing whack-a-mole. What works for some, don’t work for others and vice versa. Some people say surgery is the only way to treat it while others have surgery and it is like poking the bear – it comes alive and spreads like crazy after being messed with surgically. Everyone is different and that is the hard thing about this disease. What worked to stabilize my tumors, led to the death of a friend with LMS. Anyhow, I had my three-month scans done early on Feb 23rd and saw my local oncologist late on Feb 25th. The local radiologist didn’t do any comparisons (which is what you have to do with EVERY cancer patient doing serial scans) and he skipped even talking about at least two of my tumors, one being the one we were concerned about growth. I don’t know if this man was having a bad day, was interrupted multiple times whilst reading my scans or what, but he totally dropped the ball on reading my scans. This was then a waste of over 2 hours seeing my oncologist as she had no results to talk about and was behind schedule so therefore, I waited for over an hour to be seen to find out nothing. It is a 30-minute drive one way to my oncologist as well. I was not happy. My oncologist put a call into the radiologist to re-read my scans. 10 days later, he finally posted an addendum, and it was talking in circles in medical jargon and basically said to send the scans to the Mayo Clinic and let them read them. So not happy. This was the news I got on March 6, the anniversary of Joe’s death, as we were driving to Kansas City. I had decided that day was going to be about Joe…not my cancer and this stupid cancer still managed to impinge on that day. My nurse navigator called (who is wonderful, by the way) and she made sure my latest scans were sent to the Mayo Clinic that day.
Fast forward over a week later….no word from anyone. I could see that the Mayo Clinic had received my scans and added them to my patient record. They had not touched them though. Finally I contacted my local oncologist and told her that someone needed to talk to the Mayo Clinic and let them know to read the scans and let them know I was having an issue and they needed guidance on what to do. I got a message from the Mayo Clinic two days later stating they had set up an appointment with my favorite oncologist, who is head of sarcoma specialties there. What is nice is we are doing the appointment over telehealth, so I don’t have to go there….yet. My appointment was set for April 8th, with the promise to contact me if an earlier appointment arises. I was notified and offered an earlier appointment yesterday, this one being early on April 1st. By today, I had multiple messages from the Mayo Clinic to get everything in place for this appointment. I think I have jumped through most of the hoops to be ready. I also was notified that my scans had been read by the Mayo oncology radiologist. They really know what they are looking for and are the cream of the crop when it comes to giving me ALL the information on what I am looking at. They even have a “patient view of the results” which is awesome because if you don’t understand a term, you can highlight it and see what they are talking about. It is an awesome program and I wish all hospitals offered it. Even with a medical background, it was helpful and I learned a couple of new terms.
I carry a large tumor load. This paragraph is more for my family so I don’t have to keep repeating everything. Honestly, someone once said I should put this on a caringbridge website, but I really wanted to keep my info to me…and here is a safer place for me to share everything in my life. Okay, here are the numbers. I have three tumors in my pelvis: the mass on my left side is 7.0 x 9.8 cm. It actually shrunk a bit (was 7.4 x 9.9 cm), the one on my left side is 2.1 x 3.8 cm and is stable, and the middle one (my problem tumor right now) is currently 4.8 x 5.1cm (growing from 3.9 x 3.9 cm). That is the one we are concerned about. The tumor in my L2 of my spine continues to be stable (thanks in part to Zometa IV infusions every 3 months to seal my bones to the cancer). I have a few spots on my lungs with one in my left upper lobe in the lingula (the word I learned today on that nifty patient scan program) that is 1.8 x 1.2 cm. They are keeping an eye on that one. I also had one slightly less than a cm on my right lower lobe. I have several micro nodules that in my lungs that remain unchanged from 2023.
When my sarcoma specialist and I started this journey 6 years ago (almost exactly), we decided together that we needed to decide when we felt a treatment was failing. Our agreed upon deciding factor was growth of 20%. If my tumor growth grew by 20%, it was time to move onto my new treatment. I have been so lucky. I am on my third treatment of this disease and have been on the last one for 5 years now. Do I have side effects? Yes. Have I learned to overcome most of them and lead a full life? Yes. How blessed am I to have the health to be able to travel…to be able to be a firefighter and EMT in my community? So blessed. Every extra day is a gift. The first year of fighting this disease was pretty rough…especially the first few months (I had a rare reaction to one of the chemo meds and it attacked my lungs and I just couldn’t breathe). I literally thought I would be dead in two years or less, that is how awful it was. Instead, I have been able to live and travel and do a lot of wonderful things, making memories with wonderful people. I don’t know the math, but I am guessing my doctor will just have me have more frequent scans at this point. I have a big trip planned in June to Africa and I will be going…and need the strength to make that trip. So we will see what he says. I just hadn’t had any growth in so long…I had been blessedly stable for so long, this was a shock. Is this the beginning of the end or the beginning of round two in my fight against this disease that will allow me more stability and more time? I don’t know. I know that I look at things a bit differently now. I have someone so close to me waiting for me in Heaven. I am no longer afraid of death. But I also have so much to live for. I have two great kids I love so much and a husband I thoroughly enjoy walking through life with. I will let you know what my doctor says when I see him next week. Until then, I am enjoying life here in Montana with my trusty companion, Tallinn, at my side. It is almost porch sitting weather. We both can’t wait!




























































































































































































































































































































































































































































































