Thursday I was back to Mayo Clinic. It was test day. First off a stop for gas. A big thank you to the wonderful people who sent me Kwik Star gas cards. It is so appreciated.
I had a pick order at Walmart and picked up my meds on the way. Then I headed towards Rochester. Usually, afternoons are slower at the clinic but not today. I ended up on level 8 for parking.
First up was a blood draw. I stitched in the waiting room.
Then it was time to head up for a CT scan. Technically I needed three a chest, abdomen, and pelvic. They do them all at once so it’s no big deal. The waiting room was really full. I had a 3:00 pm appointment and ended up waiting until 4:00 pm before they took me back. That was totally okay. I had my stitching with to distract me.
I get my CT scans with contrast so had to down a bottle of water. I don’t know why they don’t make it cold water. It’s room temperature and you all know I like ice.
Once back to the parking ramp, it was cleared out. It was a night and day difference from the time I came to the time I left.
I picked up some supper at Chick-fil-A on the way…thanks so much to the blog readers who sent me a gift card!!
Then it was time to drive home and wait for the results of the tests to come in. I got almost an hour into my drive and stopped to go to the bathroom. I checked my phone to see if any results had come in. Most of the results were blood work that didn’t make a difference.
I did get the Chest CT scan results back and they weren’t good. The report opened with this sentence.
“Enlarging pulmonary nodules and nodes remain highly concerning for progression of metastatic disease.”
I read through the report and it was true…the results aren’t good. The problem areas in my lungs have started growing again. UGH. I got back in the car and headed home. I called each of the kids along the way. We all agreed that we weren’t happy with the results but we didn’t know anything for sure until the Tumor Marker number came back.
I got home, fed the dogs, did laundry, wrote a blog post, loaded the dishwasher, and periodically checked to see if any other results came in. Nope, none.
Then I decided to just forget about it and stitch. At about 9:45 pm, just when I was starting to decide how much more I was going to stitch for the night my phone binged. I had test results. My tumor marker that we were waiting for was in.
The news isn’t good. It’s 2692. There is a chart below that graphs out my history. Any number over 2 means there is active cancer. People can occasionally have a number of 10 and it just stays at 10. Once it starts fluctuating higher, that means the cancer is growing.
So that is where I was left for the night. It was 10 pm and I had to work in the morning. There was a telehealth appointment scheduled with my doctor the next morning. I’d be taking that call at work.
Being this isn’t my first rodeo with this I made the assumption that I’d have to get a PET scan…then some sort of treatment. I was hopeful that there was nothing in my bones like in August but wouldn’t know anything about that until the abdomen and pelvis results came back.
Off to bed I went…and surprisingly slept great.
In the morning my other results trickled in. This was the report of the abdomen/pelvic CT scan.
1. Minimal increase in size of the lytic metastasis in the L5 vertebral body, which now measures 2.2 cm. Likely additional bone metastasis with focal cortical disruption in the left side of the L1 vertebral body.
2. No evidence of extraosseous metastatic disease in the abdomen or pelvis.
Again that news wasn’t the best.
The appointment with my doctor was a telehealth appointment. I went to work and waited for the call. My daughter Kalissa came and she was with me when I got the news.
Even though not down much my tumor marker was down. She took that as good news that it didn’t go higher meaning the radiation I had on my spine is starting to work.
She was concerned overall and thought it might be time to retreat me with Radioactive Iodine. For me being I am Radioactive Iodine resistant, it means I have to go through that whole icky treatment all over again with the hope that it will buy me a few years. It also will increase my chance for getting leukemia.
At that point, I might be sick enough to qualify for a clinical study that they are having pretty good results with. UGH. She says that new treatment protocols are just around the corner and we need to try to keep me here long enough to try to benefit from them.
The icky treatment is the one I had back in January of 2022. I have to go on oral chem. The stuff does a number on me. It’s the stuff that made my face break out with lots of oozing pimples. It’s the stuff that made my mouth feel like it was badly sunburned with canker sores on top of it. It’s the stuff that had me in the hospital in isolation for three days and then kept me away from people for a bit after that. It had me unable to taste food for about 8 weeks. It blew out my salivary gland on my left side and it didn’t work properly for six months after. It took me to the doctor’s office twice begging for some kind of help because I was so miserable. I also have to do that low iodine diet which stinks. It was the worst 8 weeks of my life…and I have to do it all over again.
I’ll admit. I’m pretty sad about it all. I hated the treatment. I never wanted to do it again.
Then part of me pulls myself back to reality. My husband would have gladly done all of that to live another two years…and I will do it and be thankful for the ability to do it. I need to remember that and not get mopey.
Here I am. The choice is to do the treatment with the hope it will buy me a couple of years of quality life…or give up and let myself go. I’m deciding to give it another try. I feel a little better this time knowing what to expect and can hopefully stave off some of the misery…go on steroids earlier, and get treatment for my face and mouth sooner. I will also know to give myself a little more grace in the process.
There are lots of complications before the treatment will actually happen. Insurance will deny the oral chemo…the company has a program to help people in that situation and will give the medicine to me cost-free…but all of that takes time. After I get the medicine in my hand I have to contact my doctor and the times and dates will all get set in place. It makes planning hard but it will get figured out.
I’d be lying if I said I didn’t cry a few tears over this. It’s hard to see life slipping away and there is nothing I can do about it…but maybe there is. I can do the treatment.
I’ll keep you posted as things progress and I get closer to treatment.