I am pleased to share with you that I am on vacation. It’s not a “Wooooo!! Spring break! Cancun! No parents!” kind of vacation. It is the vacation your doctor’s give you from chemo when your quality of life is in question.
I went to the doctor last Friday accompanied by the lovely Sarah. The beginning of these appointments after they take your weight and blood pressure are to assess and “grade” each one of the side effects that are having an impact on your life. As I mentioned in my previous post there are quite a few side effects that are making everyday life a bit challenging and unpleasant. You know how you feel when you have the stomach bug? That’s most days for me. My stomach is torn up, my appetite isn’t great, my hands and feet are swollen, I’m nauseated to the point of vomiting at least once per week, and I have an invasion of mouth sores. Fatigue goes without saying but aren’t we all?
Everytime you report a side effect to your medical team they need to know in full detail the frequency and severity of what you are experiencing. They use your feedback to put it in a nice little category and “grade” your side effect based on an established criteria. The trial has a protocol for EVERYTHING. Grade 1 nausea? Do this. Grade 2 mouth sores? Do this. Usually the “do this” part is some sort of pill. The tricky part is that each pill comes with a price. For example, I took myself off of the pill prescribed for skin rash because it was intensifying my stomach issues. It’s like this never ending cycle of pill popping to keep up. I don’t want to be taking 20 pills a day to feel partially normal. My liver is already overworked and underpaid.
I expressed this to a few members of the medical team and I was pleased to see just how responsive they were to my concerns. I asked the NP how long they projected me to realistically be on these drugs and the answer was “ideally, indefinitely”. It was a punch in the gut to hear the word “indefinitely” as I am only 12 weeks in and feeling so out of sorts and worn down. It was at that point that I could no longer hold back my tears (the NP even started to tear up as well). They really empathized with me and the toll the trial is taking on me both physically and emotionally. We had a very open and honest dialogue about the importance of quality of life. I told them that if they foresee me on this drug indefinitely, this is not sustainable as it is now. It’s just no way to live.
They really listened. They didn’t dismiss my concerns and it was evident that they wanted me to feel well and in control. This conversation reinforced that they view me as a person first and a research participant second.
With everything on the table, we made a deal. They are giving me about a week off from the MEK inhibitor. I’m on a really high dose of that drug and it’s the culprit when it comes to the majority of the side effects I am experiencing. I am still required to take the other pill which is either a 2nd drug or a placebo. Once the mouth sores clear up (good riddance) I will return to MGH in a week or so and they will do some blood work and dispense the MEK inhibitor to me at the same dosage. We will check in toward the end of September following my next CT Scan. After that, at my request, we can discuss reducing my dosage.
My hope is that the cancer will still stabilize (or die a painful death) being on the drug longterm but the side effects will minimize once I am on a less intense dosage. I told them that I want to dose reduce (badly) but I do not want to compromise my progress. They assured me that in trials it is very normal to start at the highest dosage and eventually dose reduce.
A few people asked me what I’m going to do this week since I’m off drug. The answer is eat ice cream. I am going to eat ice cream without living in fear of a stomach revolt. Flavor TBD.
Oh and fun fact- I kicked off my chemocation by going to the Providence Roller Derby (if you haven’t seen this before or don’t know what it is, google it. I can assure you that it’s intense and these women are not to be messed with). To my surprise Michelle Kwan was there as a celebrity guest (um, what?). At the beginning of half time she walked by my friends and said “hi” to us. I was oddly starstruck and just smiled back at her like a goon without saying a word. I turned around at my friend Erin and she was also sporting a goon smile. So basically we looked like idiots. I would chalk it up to a win.
My second and final win of the weekend is that I had enough energy today to clean my entire apartment top to bottom, do 2 loads of laundry, and run to Savers to donate some clothes and household items. It’s amazing what you can accomplish when you aren’t slowly and systematically poisoning yourself. Am I right?