We finally have progress on my treatment. I was assigned to the control group for the clinical trial which receives no radiation therapy and a continuation of chemo. It would mean seven or eight rounds and another two to three months. I decided to drop out of the trial and go with radiation treatments in half as much time. I’m anxious to get back to my life.
On February 26ᵗʰ, I met with the radiation oncology team to prepare. We created a mold to fit my upper body and head that I lay in and added four freckle-sized tattoos. These allow the team to line me up in the same position every time. The mold starts out like a small waterbed. I lay on it on the CT scan “bed” while two people held and taped it up. The warm liquid and chemicals inside solidify due to the heat. It’s similar to insulation foam that’s sprayed in houses. Once the mold was ready they gave me my second through fifth tattoos that will help line me up with lasers for additional fine-tuning of my position. I have one on my chest, one just above my belly button, and one on each side. I might turn them into other tattoos later. The nurse suggested constellations. My first thought was the four compass points. We’ll see.
Next, they did a CT scan of my torso. They’ll use this scan to map out ten different paths the radiation machine will follow and the exact location and amounts of radiation applied to the cancer cells. My first treatment is on March 11th. In the meantime, the radiation oncology team will be triple-checking the computer’s plan and making any adjustments. I’ll go for a treatment every weekday for two weeks. The first visit will include a practice run to confirm no kinks need to be worked out, but each treatment appointment after will take less than an hour.
I probably won’t feel side effects until the second week. The biggest one will likely be fatigue, which I’m already dealing with from chemo. The others will be related to dry and sensitive skin around the machine’s target area. I’m not sure if it will be just my chest or if my sides and back could be affected, too. I’ll have to be very careful with my skin. There’s a five percent chance that my throat could become sore and make swallowing painful. After five months of chemo side effects, bring it on.
If you’re curious, I found two videos that explain how it works. This one and this one. There are different types of radiation, and mine is either proton or photon radiation. I’ll double-check which one it is.
In other news, Oscar starts his new job on the 4th. Part of his training will have him in Houston for a week. I’ll be getting most of ‘my treatments without him, so I’ll be leaning on Team Hedgehog more than usual. I’m not worried. I’m just happy his job search is over. It does mean he’s commuting to work again. We’ve been lucky to be working from home together for almost four years. I’ll probably put on Street Fighter Lets Plays in the background to make it less eerie. I’m excited for him and proud of how he never gave up or settled for a position he was not enthusiastic about. I just hope this new company is good to him.
Now that we know he’ll have a regular income again, we can finish settling into our new apartment. My craft supplies have been in boxes since my DIY cabinet doesn’t move well on the thick carpet. I bought some tempered glass chair mats to go under it, and the casters glide just as smoothly as when they were on hardwood flooring. I love how good it looks so far with my supplies arranged on the cabinet shelves. So much better than when they were all in drawers or boxes.
I also got a new bird feeder to hang over our patio. It was something that caught my eye when Rachel and I last did some window shopping. She texted me that night saying she was loaded. I bet it would have been a chemo shopping spree if the circumstances were slightly different. I could tell things were not going to get better for her with the way she would suddenly not remember what she was talking about, or how the conversation would bounce around so much in a short time. I don’t know if she saw her Chiefs win. The last time I heard from her was before halftime. I hope she got to celebrate. A few days later she died, just as she arrived at hospice.
I haven’t gotten the… nerve? guts? strength?… to watch the footage of her funeral. I still haven’t watched Roxy’s either, even though it’s the first tab on my phone’s browser. It hurts so much more losing Rachel. She was my best friend among the other survivors. I get the feeling she was a lot of people’s best friend. I wish her cancer would have given us one more year with her, or at least seven months. We were going to the Sites and Insights retreat in Denver this September. It would have been the first time seeing each other in person.
A nickname from Rachel is a major honor. She called me Jonesy after the cat in the Alien movies. She loved those. I’m not sure (or I can’t remember) how I earned the nickname. Maybe it was related to one of my chemo brain shopping moments when I surprised her with a Budha Xenomorph.
She loved my artwork and gave me the confidence to consider selling crafts. I turned a favorite comic strip of hers into a large plaque and shipped it clear out to Missouri. It made her so happy that she cried. So there are two items I’ve contributed to the eclectic and fantastic collection that filled her room. I can’t help but wonder what her mom will do with all of them. Will Lucy go to the retreat in her place? I hope so. I’d love to give her a hug for taking such wonderful care of Rachel.
Rachel probably saved my life, or at least extended it. Learning Rachel’s cancer had spread so severely to her brain was one of the four factors that sent alarms up during my routine CT scan in August.
If I had to pick a favorite moment, it was when she asked what Kale was. She’d bought $45 of vegetables while shopping with chemo brain. She hates vegetables. She bought Kale without knowing what it was. She felt bad because it caused her account to go negative, so she couldn’t afford a gift for me. It made me laugh so hard, which was a gift in itself.
She was about the same age as my mom but felt like a slightly older sister. She was a softie, sassy, and so punk rock. And now she’s gone. I’m going to win this round for her, and then I’m going to make so many wonderful things for strangers that will make them smile and maybe cry. Colon cancer brought her into my life, and I’m grateful for that, but I think Rachel said it best.
Team Hedgehog 