News from my Sarcoma Specialist

Sorry this is a few days late. I had my teleconference with my sarcoma specialist from the Mayo clinic on Thursday afternoon. I planned to post that night, but with having labs, a meeting with my local oncologist and chemo also that day, I was tired….or so I thought. I felt exhausted but thanks to the lovely bag of IV steroids I got along with my chemo, my body was exhausted but my mind continued to race. I didn’t fall asleep until about 0400 and then got awakened by my alarm to get Lily up and going for school at 0645. It was a short night and even though the day after my chemo is usually a good day for me, going on barely 3 hours of sleep was not optimal. I got lots of sleep last night….dreamless even…so feeling better today.

My specialist went over in great detail my CT scan results from my chest, pelvis, and abdomen. It is stable. There were some micronodules that were new in my lungs….less than 3 mm. They could be several things but are considered unterminate right now. They could be a reaction to the meds I am on…or they could be new growths due to the meds I am on not working as well anymore. Basically we won’t know until we wait and do the scans in 3 months’ time. The blood clot in my lung is gone but I was told that as long as I am actively treating my cancer (so probably up until the end when I go on hospice) I will be on the blood thinners. So the plan is this: continue with the current treatment until February. I will always be on the blood thinners and the zometa (the IV medication for my bones). In early March I will have my regular 3 month scans. If all is stable, I will have earned a chemo holiday. I can’t be on nothing…too dangerous with LMS. I will go on hormone therapy, most likely aromatase inhibitors to cut off all estrogen and progesterone in my body. Because I have one ovary left in me (but incased in an inoperable tumor), they will most likely give me monthly shots to make sure it is not working on any level. Blood tests have somewhat confirmed this but we want to give me the best shot to see if the AI’s will work for me. In some LMS patients, this is a magic trick and they get a lot of shrinkage. For others, their LMS cancer just grows out of control. I am highly receptive to estrogen and progesterone, so I am hoping it will help. But as always, it is a crap shoot and we won’t know until we give it a try. Now if the scans are not stable in March, that is a different ballgame. I will then not be getting a holiday…I will be making a choice with my sarcoma specialist of the next chemo agent to pick, while still trying to give me a good quality of life. So there it is. We wait until March unless I can’t tolerate the Doxil for the next three months. I have an echocardiogram scheduled the first week in January to make sure my heart is staying healthy. Doxil will eventually attack your heart and I am getting close to the point where it could happen. So all in all, in case you were wondering, this is good news. They doctor is happy with where I am at right now. I have had a stable year and I am leading an active life (although not as active as I would like). Honestly, it could have gone so much worse this year and I have been stable. This is a blessing. I asked him about the COVID-19 vaccine and he said to take it the first time it is offered to me. So I will. I would love to get my life back a bit.

My sons and daughter-in-law are going to get tested prior to coming home this next week. They will each be here a short time, but I will take whatever I can get! Tim is trying to stay busy during his break in his master’s program…he has been in school full-time, non-stop since May, and is now lost with the free time when he doesn’t have to study. He is half-way done! Joe has been working as a firefighter for three weeks now. He had his first 24 hour shift at his full-time gig yesterday and then his first 24 hour shift at his part-time gig Saturday. He’ll have Sunday off and then work again Monday for a 24 hour shift. He seems to be enjoying it so far. Michelle is doing great but ready for a bit of a vacation. Lily is on her semester break and curious as to how her spring semester will pan out schedule-wise. Rich is plugging away at the store. They had 24,000 lbs of weights delivered this week and a number of bigger fitness equipment….all in time for Christmas and New Year’s resolutions. We are short-staffed right now and I am not in a place where I can go work retail on the floor, unfortunately. But all seems to be going well for all of us…again a blessing after this crazy year.

Thanks to the Miller family for a plate of goodies, and for MeiLing Marshall’s goat milk soap (which I nearly took a bite out of because it looks like peanut butter and chocolate fudge – to my defense, Rich thought the same!) and her gift that is under the tree awaiting Christmas. My awesome husband has planned a trip for himself, Lily, and I to go to Beaver Creek, Colorado during the 2nd week of January. Tim will come down to join us at a lodge. I am going to explore and take photos and walk. They will ski two of the days and we will all do a snowmobiling trip up to some beautiful sites near there on another day. It will be nice to get away. We’ll be gone 6 whole days (minus 2 for driving). I can’t wait! It will be nice to get a trip in before my next round of chemo. We are hoping to take some more of these as time and my health permits. I feel like I have lost so much opportunities for travel due to COVID this year when I was feeling good, which was really frustrating. Something to look forward to! I love snow and the cold….and the mountains. Can’t wait!