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| Photo of ultrasound. |
I found a mass in my left thigh on June 16th. I have been training for a half-marathon and danced my butt off at a MarchFourth concert on June 15th so my legs were sore an in need of massage. It seemed pretty large to me. I immediately sent my sis a text message with an expletive. On Monday I called my primary care provider to schedule an appointment. During the appointment, she agreed the mass is deep in my leg, and is 2 or 3 centimeters. She ordered an ultrasound. That was done on June 20th. An MRI done on June 26th. I think the report indicated the tumor is in my vastus medialis muscle. They couldn’t tell whether it was or was not cancer so an ultrasound-guided biopsy was ordered for July 2nd.
As I've gone through the various diagnostic tests my coping skills to deal with the stress has been to hike in the mountains or go running. I can't sit still! There's nothing better than being in nature to try to make sense of what's going on and process the possibilities. I hiked Cervidae Peak and Around the Mountain at Bogus Basin for the first time while I was going through the testing process. I think this is a better option than curling up in a ball with the covers over my head. On that note, I am NOT sleeping well at all. For some reason, I now wake up at 4:00AM every day. Stress-related insomnia. It's not fun. 😩 (Note: Emoji options didn't exist when I blogged about my TNBC diagnosis. This is a fun development! Gotta find the good in everything!)
I received a call from the PA on July 7th. She said the words “low grade” and “spindle cell” and indicated myxomas were typically benign so the words she used were confusing to me. Low grade is a term associated with cancer. She also said she was referring me to my oncology because “we need to get it the hell out as soon as possible.” As soon as we hung up I Googled “spindle cell” and spindle cell sarcoma was the first thing that appeared in the results. My heart dropped. I suspected it was a sarcoma and this news confirmed my suspicion. I was with my daughter, Olivia, at the time and we’d planned on walking on the Greenbelt so I quickly sent a text to my family that it wasn’t looking good, and went on a walk with Olivia.
I received a call from the cancer center on my way home and they indicated my oncologist was going to be on vacation and the earliest they could get me in was July 31st. I gave it some thought and knew that it would be a major challenge to wait that long so called back and asked if I could see a different oncologist in order get in sooner, and they weren't willing to do that, but they changed the date to July 25th. It is still too long and heightens my anxiety a few notches.
My experience has been that waiting is the worst part of the journey. I want to know what kind of cancer it is, when surgery can be scheduled, what stage the cancer is, and whether I’ll need radiation and/or chemotherapy. During my first battle, learning I had to go through chemo and radiation was hard, but I actually looked forward to those treatments because it was doing something! The goal is always to get the cancer out and kill it in any way possible. It's part of my type A personality, I guess.
After returning home I started doing additional research about sarcomas and spindle cells and I called the medical office and asked for a copy of the pathology report. It said, “low grade myxomatous spindle cell neoplasm”. My heart dropped yet again. I spent hours reviewing case studies, learning about the 50 different forms of sarcomas, and struggled to accept the fact that I had cancer for the second time in my life. It finally started to sink in around 11 o'clock that evening....I have cancer again. It's surreal.
The next day someone suggested I contact the Cancer Treatment Centers of America (CTCA) to ask if they might be able to shed some light on the pathology report and I called them on Sunday, July 9th. A representative called me on Monday morning at 6:30AM MST! By the end of the call I decided that I wanted to go to their Phoenix cancer center for an evaluation and treatment. They indicated that sarcoma is a rare form of cancer (I’d already come to that conclusion) and they have a Sarcoma Team of specialists with experience treating this cancer. They will do genomic testing on the tumor to determine the right course of treatment, albeit radiation and pinpoint exactly what type of chemo will fight the cancer. Those two facts alone were big selling points. They will also pay for my airfare to the cancer center. i have an Aunt and Uncle that live in the Phoenix area so housing could be covered. They contract with two hospitals near the cancer center and while I’m there for the evaluation the lodging will cost $25 and while I’m undergoing treatment it will be $50 per night. I said I could stay with my relatives and they said they like their patients to stay at the hotel so they have time to decompress and relax. CTCA couldn’t get me in any earlier (they did put me on a waiting list) than the Boise St. Al’s cancer center but I’ll be there July 25-27th.
I’ll meet with members of my team on day one, undergo additional testing on day two, and receive my treatment plan on day three. I had a 30 minute call with an oncology nurse on July 11th and we talked about my previous cancer and treatment as well as the new mass in my leg. She said she was adding a surgical consult to my orders. I asked her if she can let the surgeon(s) know that I want the surgery done ASAP and I will stay in Phoenix if they can schedule the surgery the next week. I’m going to pack as if that’s going to happen and I’ll stay in Phoenix if we can make that happen. I want the tumor out and tested!
I also told the nurse I've been training for the Onward Shay half-marathon and that I'm still planning to participate in at least one of the races on October 28th - even if I have to walk the 5K. It's a major personal goal to get this taken care of and take part in that race! The marathon is named after a woman named Shay Hirsh that lost her battle with multiple myeloma, a form of blood cancer. She battled it valiantly for 11 years. I want to honor her memory by doing that race.
I am feeling confident that I found the mass early and all will go well. My new mantra is "I'm a badass and I'll kick cancer's ass again." I'm creating a Kick Sarcoma's Ass Playlist - if anyone has recommendations for the playlist let me know!
I've got this!
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