Well, after a whirlwind trip of 10 hours of driving in the upper Midwest, we are safe back home in Omaha. We got home and decided to stretch our legs and go for a family walk before Tim headed back home to Lincoln. It was really great that he was able to come up here and stay with his sister and Tallinn while we were gone for about 30 hours. Listening to podcasts while we were driving there and back really helped make the trip pass more quickly. Also, a quick shout out to my best friend, Judi, who lives in Rochester. She picked us up this morning and drove us right to the front door of the building we needed to be at for my appointment. I only got to spend about 7 minutes with her, but I will always take what I can get! She is one of those friends who always makes me laugh, even through the tough times.
We entered the Mayo Clinic and immediately had to answer a barrage of questions. We then got our temperatures taken. We moved on to a second station and had to give my Mayo clinic patient number and let them know when and where our appointment was. We were given a big blue sticker with the word “Thursday” printed in big white capital letters. We had to wear the sticker in plain sight the whole time we were there.
The Sarcoma Cancer Care Team is housed on the 10th floor of the Gonda building. It is a newer building and was beautiful. There were a lot of Murano blown glass sculptures in the main areas and then beautiful quilts back in the patient appointment room areas. The waiting areas are massively large with several wings waiting in the same area. There were signs on some seats for people not to sit on to keep physical distance from one another. Most, if not all, of the patients were cancer patients, so there wasn’t a lot of need to say much. We are pretty good at practicing social distancing when we need to before the COVID 19 virus became an issue. I got called back pretty quickly and when I was measured at being 5 ft 3.25 inches. That’s the tallest I have ever been in stocking feet! Okay, truth be told, I was wearing a fuzzy hat. It was cold today up in Rochester! Anyhow, the person checking me in asked a few questions and then gave me a sheet with the names and pictures of all the team members on my Sarcoma Cancer Care Team and contact information. Wonderful idea! A fellow (which is a doctor studying to be a specialist in a medical field) came in and so did a RN. He asked me to start telling me the story of my cancer journey. He had already known most of what I was going to say….but wanted to hear it all in my own words. He verified some of what I said with questions of his own, and then allowed me to ask him the questions I had brought with me. Then he went over some of the scans with us and then some of the options that the team had talked about ahead of time for treatment.
When the Sarcoma Specialist came in (he’s the head guy there and super nice), Rich and I were very impressed. He told us that he had talked to the gyn surgeon at the Mayo Clinic and they had talked about my case ahead of time. Surgery is not an option right now, agreeing with my local surgeon in Omaha. So they cancelled my later appointment for today. That did allow us to leave earlier to get back home, which was nice. So this doctor has a different way of approaching my case than the doctors in Omaha. This Sarcoma Specialist sees a LOT of people with LMS like me. To the doctors in Omaha, I am an enigma. Leiomyosarcoma is 1% of all cancers. The fellow has seen more sarcoma patients than my doctors in Omaha. So they have a lot of experience. My doctors in Omaha want to be very aggressive and try to shrink the tumors in my pelvis so they can operate. The trouble is, it has to be shrunken down really small to get ALL of it out. LMS is an evil beast. It just keeps coming back. It isn’t a matter of if it will come back but when and where. My cancer has already spread to other areas of my body. I am stage IV. The toothpaste is out of the tube and it isn’t going to go back in. There will be no cure. There will be living with it as best I can. The doctor said that there is no reason to put me through the really horrible chemo treatments (which is what my chemo doctor in Omaha wanted to do even before my lungs were cleared) when we can use some that will give me better quality of life. So for all you medical folks out there, we are going for palliative care versus curative. Currently, I have no symptoms from any of my spots of LMS in my body, including the one in my pelvis the size of a cantaloupe. If I hadn’t really been in tuned to my body, I would likely still be living my life not knowing about it. My back does hurt if I have been walking a lot from the spot on my spine. However, if we can keep everything like it is or even shrink it, then I can lead a good life. The studies have shown that the really icky combo drugs did not prolong the life more than the single, less icky chemo drugs. So we are aiming for quality of life. Surgery is not longer the top goal. Letting me live my life is. No, we are not giving up. I know this will most likely kill me at some point. There is no cure. However, I am going to take the Fellow’s advice and do whatever makes me happy. The plan is to start on Doxil. It is a chemo drug with a lipid attached to it. It is evidently bright red and has very few side effects. The biggest one being that it may turn my hands and feet red. At least I live in Nebraska where the greeting to all natives is “Go Big Red!” I should fit right in! It does not cause hair loss. In fact, my hair has started growing back in a bit over the last 6 weeks. It is maybe 1/2 cm long (yes, I look like a chia pet). My hair is dark though….so I don’t know if it will be blonde again or not. It is nice to know that I will maybe have my own hair for Joe and Michelle’s wedding! Six months of growth….I might be able to pull it off! The doxil is an IV drug and will be administered over a couple of hours once a month. The Mayo doctor also suggested another drug (not a chemo drug) that is given IV once every three months. It is a drug that will strengthen and seal off my bones so the lesion in my L2 vertebra doesn’t spread or weaken the bone and will protect my other bones from getting other cancers spots growing on them. So these two drugs are the suggested plan of treatment here in Omaha. I have two appointments tomorrow (Friday) at Bergan Mercy. I will see my chemo dr to review my plan and set a start date (most likely next week) and then the pulmonologist to get my lungs checked out. I had a chest CT on Tuesday, and the Mayo dr’s reviewed it and said I should be good to go. So more tomorrow on dates and such.
I want to thank you all for your words of encouragement and support. I am overwhelmed with the kindness being sent my way. I have so many wonderful people in my life. I am so very blessed! I am sorry if you sent me a message asking how today went and I didn’t get back to you. I really wanted to talk to my kids first and my parents. To avoid having to type out everything or talk about it over the phone multiple times (because I tend to get a little emotional talking about it) I would rather just type it here and let you all read it at your leisure. I hope you understand.