Chemo Education

After a deep sleep, I felt better this morning (sans the super puffy eyes!).

Unexpected setbacks really suck. I thought we were over that part. But on the flip side, better to know now rather than later. The folks at Mayo are trying to get me in next week for the final biopsies. The lung biopsy is scheduled for the 7th at the moment, the first day of school for the kids. UGGGGGH. That’s just a bummer. But like Linds told me, it’s so I can be there next year. Hopefully, we can get the skin punch and node biopsy next week, then start chemo ASAP.

And chemo, oh boy. I was wrong the other day, it’s TCHP. Because the drugs dry up your body, that’s why the port is installed. The port is a device that’s surgically installed under the skin. There are three little bumps between which the nurses can take blood and give infusions. It’ll be sore for a few days after surgery but I shouldn’t be able to feel it much after that.

So the chemo will happen every three weeks for a total of six times. They test your blood for low blood cell count. You can proceed with the chemo if they’re good. Otherwise, you wait. I’ll need to take some kind of steroid via bill a day before and a day after, plus the day of. And THEN 24 hours after the infusion, I go back in for a shot. Yeah.

Each of the drugs have their own side effects, a lot I can’t remember at the moment. There’s a lot. Biggest is fatigue. There are drugs to combat the other things pretty well. Lindsay has apparently made a list for these things already ? I get get a few gadgets that were suggested in a young cancer survivor’s group.

I’ve thought and thought about cold cap therapy. I was kinda meh about it from the beginning because it’s so much WORK. And it’s cold on your head when you’re already cold. The chemo infusions can run 5-7 HOURS. And then you change it every 20-30 minutes during the whole thing – and before and after (2-3 hours after!). That’s a lot. That’s really stressful. It’s having to rely on a whole bunch of people to help me with it and nah. It’s too much. It’d add stress. So, once it falls out, it’s being shaved. And we are gonna be wearing the coolest wigs. or hats.

If you don’t know, I’m obsessed with hair products. It took me 25 years to figure out what to do with my curly hair, and then years more to like it. It’s going to be sad to let it go. I can’t be sure I’ll get my curls back. My hair may come back in all gray or white. It might not come back at all. I feel like I need to mourn it. It’s been a sore and proud spot over the years.

I had a haircut scheduled in October. It’s that far out because my stylist is THAT good. Seriously. I’ve had maybe 3 stylists who knew how to cut my hair, and she was one of them. Hell, she’s become the “firm’s” stylist – at least 5 of us get our hair cuts there. I canceled the appointment and wrote her email letting her know why – I didn’t want her to think I wasn’t coming back because of her. I admit I cried doing it. Besides being really great at hair, I enjoyed chatting with her while she cut and washed my hair. From kids to travel to BLM to tattoos and a whole lotta other subjects. She remembered my kids’ names, how old they were, what hair products I was using. It’s a connection I won’t get for a while and it feels like another loss. Know what I mean?

Anyway. The nurse who explained all the chemo stuff took me around the infusion area. There are little rooms with curtain doors for each individual. There’s a TV and a window that gets bright light. A decent place to spend 5 hours in. I’ll need suggestions for keeping occupied. Here are current hobbies:

• Crosswords (I do have the NYTimes app!)
• Handwriting, cardwriting – pens in many different colors (I think I have all of them)
• Watching horror movies, teleparties
• Reading…horror novels ? no self-help or business books

OMG what else?! I was trying to think of things I do on airplanes. I’ll think of more I’m sure. I wonder if they’d let me bring plants… ?

No appointments tomorrow! Feels weird. Echocardiogram on Friday. So many appointments recently. Let’s get on with this shit!