I had my follow-up today with my favorite NP. The appointment went well because I took control of the appointment. I didn’t wait for her to ask questions. I went through all of my concerns, and the answers may not have been deeply informative, but they were generally satisfactory.

We addressed my lack of taste and appetite. There really isn’t much I can do about it other than keep experimenting. Oh and I can employ the Hook movie Lost Boy strategy of imagining the taste of what I’m eating. I’m skeptical of this strategy, but I’ll try it. “I am eating cheddar cheese. I taste cheddar cheese….” I will meet with the nutritionist this week to see what we can do about me maintaining my weight. Which of course brings me to an important point. I’ve shared before about my issues with body image, relationship to food, and weight loss. However, I find it important to point out that my current weight loss of more than 10% during treatment puts me at a higher risk of overall mortality. So, as I’ve said in the past, comments about my body, positive or negative are not welcome. And perhaps it’s important to remember that not all weight loss is good weight loss even for those in larger bodies. Of course, I am seeing the nutritionist to mitigate the effects of this weight loss, but truly, don’t make comments on other people’s bodies as positive as you think it may be.

Anyway, what took most of the appointment was addressing my high heart rate. I had it on my list of things to address, bc my heart rate goes pretty high just from standing up and walking to the kitchen or bathroom within the first few days of infusion. Yesterday I did 5 EKGs on my Apple Watch which were all inconclusive or couldn’t measure, but I attributed that to watch dysfunction. However, I was obviously feeling heart rate changes and acceleration to even think to use the EKG function on my watch. But my heart rate decided to just make things loud and clear today. I was at 155bpm at first measurement in the office, then I stayed between 135-145bpm during the appointment, which lasted about 20-30min. That was enough to raise red flags. She gave me the choice to try to drink a lot of liquids to lower my heart rate then go get an ekg if that didn’t lower my heart rate. Or I could get IV hydration at the infusion center, monitor my heart rate, then go get an EKG if there was no change. I said the option of me not having to force liquids down my throat is the best option.

So off I went to the infusion center to see my friends. I was warmly greeted and quickly hooked up to an IV bag set to drip for 90min. Even within the first 20min my heart rate began to fall. By the end of the drip I was still at 102bpm, but that was low enough to go home to just monitor my heart rate. I’ll have an EKG within the next few days to make sure nothing else wonky is happening. I feel pretty confident that dehydration was the issue. It was also super helpful to have a talk with one of the infusion nurses about my struggles with hydrating. She said “Do what you can, but don’t make yourself sick about hydrating. Call us, we can get you hydrated without the stress of trying to force liquid down your throat.” That’s not an exact quote but close enough. I’m curious if the nutritionist might just put it in my plan do go for hydration on certain days in my cycles.

I’m home now. My body feels better with a lower heart rate. I hadn’t realized how on edge I actually felt when my heart was working so hard. Even in the infusion center I could feel tension release. While the IV fluids didn’t fix the stomach discomfort or peripheral neuropathy, it released one pressure valve that I didn’t realize was causing as much discomfort as it was. I’m exhausted from all the excitement today.


Gratitude: clevercolette had big plans of ice skating with friends for a fundraiser today, but my dysfunction threatened those plans. Thankfully we were able to get her to the ice skating rink, and the other parents swooped in to help her enjoy the rest of their plans. She is being taken care of and has a ride home, and that is something to be very grateful for.