Thank you for the prayers and good wishes and positive energy and notes and letters and cards and food and EVERYTHING!
Here is the high-level summary. Details are below.
Got the tattoos and did the dry run for radiation, but due to low white cell count, my first week of radiation and chemotherapy was cancelled. We'll try again next week.
Last week, I got the CT scan and tattoos to set up for radiation. I had to drink a drink before the CT scan, but it wasn't too bad. The IV is always terrorizing, so that was normal. Getting the tattoos felt like getting pinched by a needle, but it wasn't too bad overall.
This week was supposed to be my first week of the combined radiation/chemo therapy, for any of you keeping track.
My normal routine is supposed to look something like this:
Mondays: Go to the infusion room (ugh -- even just typing that made me nauseous). Get attached to the pump so that I can have continuous chemo five days a week while I am getting radiation. I get to wear this thing five days a week now. I thought two days a week was onerous!
Monday thru Friday: Go to the radiation room, get radiated. Leave. Radiation takes about five minutes, but you need to allow an hour because you just do.
Friday: After radiation, they remove the pump and draw blood to test my white, red cell counts, liver, etc.
This week, it looked like this:
I thought this would be Day 1. But, it was just a simulation, kind of like a dry run.
Under the category of "Angels appear in various ways", someone from my yoga class used to head that whole department at MGH. So she met me there and introduced me to everyone to help things go a bit more smoothly. It was fun to see her outside of yoga, and incredibly generous of her to get up early and spend the morning with me there. I don't normally see her outside of yoga, so it was one of those funky coincidences that one can only marvel at.
So, I thought THIS would be Day 1. In some ways, it was. I arrived early, went to my normal infusion nurse and got hooked up to my chemo bag (the continuous infusion pump that I am supposed to wear five days a week through radiation), then made my way to radiation, which is in the basement of another part of the hospital.
Because these machines need to be stable, they are typically located in the basement of a building. For a claustrophobe like me, that can be crazy-making. But, the building designer kindly put stairs within sight of the waiting room, and at the top of the stairs is the door to the outside. That helps!
Got the radiation done. People were really nice, though for me, someone who doesn't even like to use a microwave, it was a funky thought to be purposefully irradiating my body. For my radiation, I lay face down on the table and they line up lasers with my tattoos. Then everyone scurries out of the room while the radiation happens.
Went home. Got a phone call -- My white cell counts were too low. Return to the hospital and disconnect the pump.
So, I got a little further on day 2! But, no chemo or radiation this week while we wait for the white cells to rebound.
It's nice to have a week off. Another week to get used to the idea of living with the pump. I get to take showers without worrying about getting it wet, and I get to sleep without worrying about tangling myself in the tubing. Woo hoo!
Of course, it puts off the treatment for another week, but let's not look at it that way...And after that little bit of radiation, I needed a nap, so I can see why people say that I will likely experience fatigue.
A couple of other things: The waiting room for radiation is WAY more chatty than for infusion. In the infusion waiting room, people don't really talk with one another. In the radiation waiting room, strangers compare cancer stories. And, it is sobering. You hear things like, "Hey, Dad, he has throat cancer, too!" and "What stage are you?" The only other time I've heard strangers open up so much to each other is on an airplane. And, like I do on an airplane, I sit and read my book. It's a bit much for me.
The kids are doing alright. My four-year-old is getting used to the idea that doctor appointments are non-negotiable, but is a bit tired of it all. (join the club, I guess) My one-year-old is, well,your typical 20 month old, and mostly, he just wants someone to throw a ball with and sometimes, at.
My husband is hanging in there. I figure that it is a good thing that his best friend and I are both at MGH. Unfortunately, between accompanying his friend and me, my husband is there often enough that one of the doctors asked if he professionally drives patients to their appointments. We also have another friend who is going there (for a completely different reason), and yesterday, my husband was there with me, then there with his friend, and then ran into our other friends. We need to expand our world and find better meeting places.
The song stuck in my head this week is No Rain by Blind Melon. Who knows why. Lyrics are below if you are interested. Maybe it is oversharing. I put the words in bold that stand out to me.
Well, I'm psyched to have a week off, away from the chemo pump. In fact, today, for the first time since I started treatment, I've been able to do more than one thing during the day. Yippee! I hope that you are having an awesome week, too!
No Rain by Blind Melon
All I can say is that my life is pretty plain
I like watchin' the puddles gather rain
And all I can do is just pour some tea for two
and speak my point of view
But it's not sane, It's not sane
I just want some one to say to me
I'll always be there when you wake
Ya know I'd like to keep my cheeks dry today
So stay with me and I'll have it made
And I don't understand why I sleep all day
And I start to complain that there's no rain
And all I can do is read a book to stay awake
And it rips my life away, but it's a great escape
All I can say is that my life is pretty plain
ya don't like my point of view
ya think I'm insane
Its not sane......it's not sane