This week started off with my fourth round of chemo on Monday and Tuesday, and the rest of the week has been my needed recovery time.
Each chemo treatment has been very similar for me. I head down to Barnes-Jewish Hospital in the morning, get checked into a room, talk with a few doctors, and then start receiving the treatment by IV which takes between 16 to 18 hours to receive.
It’s a lot of time sitting and thinking. I spend a lot of time wondering if the treatment is really working. Will this get me back to normal? The answer is complicated and unknown. Yes, the treatment is working. I know this because I’m able to read again, my headaches are much less (although currently coming back, but we don’t know if it’s connected yet), and mentally I’m improving greatly each month.
My abilities are coming back, but will I be back to normal? Will I be back to the way I was before? No.
I’ll always be concerned with having CNS-vasculitis flare-ups, which can lead to starting this treatment from the beginning again. Part of my brain was damaged. Some of it is healing, but a small area is damaged enough to be “dead” — and we still don’t know how much of my brain will/will not recover.
These are just a few of thoughts that start pushing their way through my mind when I’m “trapped” getting treatment. I’m not really trapped, but it can feel like it when I am hooked up to so many wires and IV’s. Moving around is quite complicated and I have to keep my arms fairly straight and resist moving them around too much. If I move or bend my arms, my infusion pump will run into errors and start beeping. It’s loud, annoying and each time it runs into trouble it slows my treatment down. My 16-18 hours of treatment can quickly grow to 17-19 hours or even longer.
It’s a lot. It’s a long day(s). It isn’t easy.
It isn’t easy, and I can’t always do it, but my goal is to have a smile on my face the whole time. There’s no reason for me not to. I just mentioned the reasons why it’s a tough day(s), and it is – but I’m lucky to be going through it.
Not long ago, we (including many different doctors) were thinking I most likely had a cancerous brain tumor that would take my life in a few months to a few years. It’s not that! I’m going through chemotherapy treatments, but it’s not fighting to extend life. I’m getting treatment for an autoimmune disease that shouldn’t have an effect on my life expectancy.
Chemo isn’t fun, it’s tough – but staying positive is easy when I think long term instead of short term.
I’m not saying it’s easy to stay positive, it’s not. I’m saying it’s easy to be positive when thinking long term. If I allow short term thinking to control my mind, it’s easy to become frustrated and dread the treatment. It takes so long. It involves needles. It leaves me feeling sick for many days. It takes all my physical energy away for over a week and a half. It stops me from doing the things I would rather do. It stops me from working. The list can go on and on.
If I focus long term, it’s hard to be anything but happy. I’m getting a treatment that will make my life better. The treatment is only once a month. It makes me feel sick and takes my energy down for a week or more each month — that leaves me with almost 3 weeks of feeling better and able to do more of what I like to do each month. Each month, my health improves even if it doesn’t feel like. There’s an endless amount of things to feel positive about and will make me smile. But I only need one thought… I’m getting a treatment that makes life better — a life I get with my wife, with my family, with my friends. I’m more than happy to go through the uncomfortable, exhausting and at times painful feelings of the treatments for that.
That’s an easy choice to make, that’s easy to happy about.