We Have a Plan to Make a Plan….Cancer Update

If you have known me throughout this journey with Leiomyosarcoma (LMS), you know it is a very rare form of aggressive cancer. Every single LMS patient is different. It is a hard cancer to treat but there are big hopes for the future in individualized immunotherapy. New things are coming out all the time, not just for LMS but all forms of cancer. When I was first diagnosed, there was a 17% chance I would still be alive in 5 years. Thankfully, I have been blessed to have treatments that have held things stable for over 6 years. I have had 3 major abdominal surgeries, two forms of chemo for 15 months, and have been on oral meds with occasional IV treatments for the last 5 years. I have been lucky. Actually, I have been blessed. I have walked into offices to meet oncologists locally here that are amazed. They have said my chart and scans don’t seem to match the person they are meeting. Then I tell them I am volunteering with my local fire department as a firefighter and EMT and I watch their eyes bug out. I tell them I travel the world and they continue to be amazed. So I have been blessed. I am, however, back in a spot where I need to be fighting a harder battle right now. I have several tumors but one is being a stinker and growing again. It needs to be taken care of in some fashion.

I have been followed by a sarcoma specialist (the head honcho, actually) at the Mayo Clinic in Rochester, Minnesota for 5 years now. I really like him. He is a kind person and yet he lays it all out without sugarcoating it, which I appreciate. I had an appointment with him early April 1st. He stated we needed to move forward to stop this tumor growth. He presented my case in front of the Mayo Clinic tumor board last night. These are all the oncology surgeons, radiologists, medical oncologists, etc. They discussed my case and think I should have radiation first, surgery, and possible radiation while I am being operated on. I have a consult with a surgeon on April 22nd and a consult with a radiologist on April 23rd, both in person at the Mayo Clinic. I am leery about having radiation locally. I want to see how long they want the radiation to go on…I may just do it all in Minnesota. I don’t know any details at all, so please don’t ask. I know that this tumor, along with my other tumors in my pelvis were not removed 6.5 years ago because they were highly vascularized….the tumors had created their own blood supply and the surgeon felt I would either bleed out on the table or end up in the ICU for 2 months. Neither were good choices, so he left them. I actually have small tattoos on my hips and back for radiation I never ended up getting in Omaha. They found out I was stage IV and moved to chemo instead. The goal with radiation right now is to shrink the tumor(s) (I don’t know if they will pinpoint just the one or go for the other ones as well) and decrease the blood supply to them. I have to talk to the radiologist at the Mayo Clinic to see if she feels my local hospital can handle this or not. If not, I will do the radiation there. I also don’t know how long we will have to wait between radiation and surgery. I am fair skinned and radiation will burn my skin. If my skin breaks down at the surgical site, will they do surgery? What about my bladder? It is precariously right in the middle of things. I don’t want to end up having no bladder control for the rest of my life because of poor radiological treatment. So there are a lot of things in play right now. Not to mention….June 17th I leave for Africa. If that ends up being my last big trip, I want to take it. My goal is to have treatment so I can live my life. If I can do this afterwards, great. If I need to do radiation first and surgery after the trip, great. I just need a plan and I don’t have all the information yet.

Rich and I will fly to Minnesota on April 21st and fly back on April 23rd. Hopefully we will have all the answers at that point. Until then, I have a couple of blood tests Tuesday and Wednesday, an IV treatment on Wednesday, and a meeting with my oncology nurse practitioner, where I will fill her in on what I know so far. Then I hop on an airplane to Houston to see most of my side of my family for 6 days. I will celebrate my mom’s 80th birthday, spend time with my dad in his memory care facility, and spend time with my brother, his wife , and my niece and nephew. I will have a good time and not let cancer be hanging over my head. That will be saved for my trip to Mayo. I know there are a lot of folks in my corner who have reached out to me. Thank you. Please know that it is best for my mental health to just deal with this when I have to. If the next couple of weeks are my last normal ones for awhile, I want to enjoy them. I kinda had this problem when I was first diagnosed with cancer…everyone wanted to talk about it. It rules my life, and I sometimes may just say, “this is a cancer free zone right now” and not talk about it. Believe me, it is on my mind all the time. I think I slept 4 hours last night and even then, dreamed about it. I need to set it aside right now until I have to deal with it. I do welcome healing prayers though. Thank you.