Today is kind of a blended post (I guess most of them are when it comes down to it). I’ve been trying to think of how to describe the way chemo feels. Both to help other people understand and to help me remember. It is unlike anything else I’ve experienced and the only thing I can say for sure is there are phases to it. When I get my chemo I am usually feeling pretty good. My counts don’t fully recover from one dose to the next, but they get good enough that I feel okay. Trust me, feeling okay is pretty good these days. So – on day one, I get the chemo. Then anywhere from the next day to three days later (depending on the steroids and meds) phase 1 kicks in. During this phase, I can’t even really explain what it feels like. I imagine it is what being poisoned would be like. I can feel it coming on like a weight all over my body. The heaviness is a combination of the sick and depression that it wraps itself in. I can feel it all the time during this phase – from the moment I wake up in the morning until I fall asleep. The sick isn’t like having the flu although there are some similar symptoms. It is the dark period that I have described in the past. The nausea is pretty much constant and I throw up a lot. In parking lots if I’m out or on the side of the road. If I’m home I either make it to the bathroom or we keep the left side of the kitchen sink empty to give me a spot to run to. It seems like no matter how good of a mood I’m in going into chemo, the darkness always takes over during this phase. Then I slowly transition into phase two which is where I am now. This is after the initial onset of symptoms but before I feel better. Kind of an in-between if you will. I am very fatigued – this round more so than the previous ones but it is cumulative so I expected it to get worse. I have times when I feel pretty good but then the fatigue and/or nausea hit me by surprise. It’s not as dark as phase one, but frustrating in that I start to think that I can do things only to find out I can’t which is frustrating. Also, the nausea comes on quickly and I find myself fine one minute and running for the sink the next. I find it hard to get through the day without a nap and even when I do nap I still go to bed early and sleep late. I’m hoping it’s helping my body heal.
The other thing I needed to blog about was my visit to the radiation oncologist today. I had my personal photographer (Fletcher) with me and he took about 80 pictures so I need to sort through them to blog about everything. But, it looks like we are starting radiation on the 29th of this month so two more weeks. It will be every day for five and a half weeks, along with going to lymphedema therapy during treatment twice a week. I won’t be posting pictures of my tissue expanders, but it was a whole new experience to see them in Fletch’s pictures. I only have the top view and haven’t really tried to see them any other way. The expanders, have I have talked about before, do not move whatsoever. So when I lay down, they stay exactly where they are when I am standing up. So what seems pretty normal in a standing position seems absolutely bizarre when lying down. On a side note – this is true of all implants so if you’ve ever wondered if someone has foobs just check out what happens when they lie down. If things roll to the sides they are real – if they don’t, they’re not. I’m not sure how that hasn’t gotten out before – but now you know the secret.
I will post soon with pictures but I’m feeling happy to be moving on to the next step in the journey. I will definitely be happy to not be throwing up going forward. At least not on a schedule anyway. I’ve got to keep my weight the same through radiation so I can’t make the diet changes I’ve been working on yet. I’m going to do some little by little as to not have an impact on my weight but I definitely can’t go cold turkey. I will be weighed every day before they zap me and I had the CAT scans done today so this is where I need to stay.
I’m also working on fundraising ideas if anyone has any of those. With Eric’s job change things have definitely worked out well job-wise but all of our out of pocket balances just got reset so here we are with an additional $11,000 on top of everything else. I can see how easy it is for people to go bankrupt with ongoing medical issues year after year. I can’t imagine what people without insurance do.