Weekly Update #17

I met with my chemo doctor this week and we’ve agreed that we’ll lower my dose by 20% for the next round. He said that I don’t need to get that sick for the drug to work, and that he fears getting the full dose again would put me in the hospital. I’m so grateful that he’s so humane.

Unfortunately I still don’t feel back to my normal yet. My blood work this week showed some of my electrolytes were off and even though I’ve been focusing on it with diet and supplements, I’m still having symptoms from it. The chemo triage nurse and I spoke this morning and it was my choice whether to continue home care or come in for IV fluids – I chose home care, which I hope I don’t regret. I wanted to spend the day with my family instead of in the infusion room.

I had a hard visit to the radiation center this week. I went in at a different time than my normal and discovered a group of patients that has bonded. They all have the same diagnosis and are going for the same treatment, they knew what number treatment everyone was on and were checking in on each other. They tried to welcome me to radiation as if it was my first time and I felt myself being the Scary Patient at them. When you’re going through your first set of treatment, it’s so terrifying to think that it might come back. And there I was, a young woman telling them that no, it wasn’t my first day, this was my 3rd time going through radiation. And no, I’m not just on radiation, this is happening during a break from my chemo. Yes, I’ve also had several surgeries for metastases. Yeah, unfortunately, I’ll probably be in treatment for the rest of my life. My current life used to be the thing that kept me up at night. I never joined any cancer support groups because I was afraid of meeting someone as sick as I am now. I didn’t want to be the Scary Patient, but I had no energy to smile and nod and be welcomed to an existence I wish I could have.

The next time I visited the radiation center totally made up for it, though. My daughter came with me because we were planning to do some shopping for my husband afterwards. We saw on ambulance out front when we parked, and when we got in the EMTs lit up and offered to play with her. They were waiting for a patient in treatment on a different machine, and they let her get into the ambulance and turn on the lights and the siren. They answered all her questions and played paper airplanes with her while I was on the table. As a sick mom I feel like there are too many times where I cannot give my daughter the attention she deserves, and I always remember the times when strangers step up and help us. I managed to get their names and the number for their supervisor and am going to call and give them accolades.

On a positive note, I finished radiation today. At the end of treatment they throw confetti at you, which I had been dreading because I don’t feel celebratory about this. But my daughter came with me and helped toss the confetti and it was so special to share that with her. Then she made a confetti angel in the detritus on the floor and made the entire staff laugh. I think it’s the happiest I have been this month, watching her make fun memories of time with her sick mom.

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