Helpless
My taxol infusion days last about 6 hours. We check in, wait to get called back, they set us up in a “cubby”, then there’s some waiting for pre-meds. Once the meds arrive, they administer them- some simultaneously, and some individually. This part takes an hour or so. The actual Taxol infusion is next, and it takes 3 hours. During this time, I have to keep frozen packs (in mitts and socks) on the tops and bottoms of both hands and feet. It’s extremely painful/uncomfortable, and while I think I could have successfully kept my hair, and I hate the baldness and dread the years it will take to grow my hair back out… I am glad that I didn’t also subject myself to the Arctic cold caps. The mitts and socks are quite bad enough!
Taxol frequently causes neuropathy, and the most commonly affected parts are hands and feet. There are no guarantees that icing these parts will prevent it, but it is a terrible potential side effect, so I have to do everything possible to avoid it. So far, I don’t have any signs of it, so that’s good.
After the Taxol infusion, I get fluids (which I request) and that takes another hour. The rest of the time is used accessing the port, scanning in meds, taking bathroom breaks, etc. All together, it makes for a long day at the hospital.
At the end of my visit, they stick on my Neulasta On-pro. It’s a wearable that goes on the back of my arm. After about a minute, a needle pops into my arm, and 27 hours later the medicine is administered. This medicine boosts my white blood count.
I usually feel fine the day of the infusion and the day after, but day 3 things start to get rough. This round, things got very bad, before I was even out of bed. The Neulasta causes side effects- mostly pain related, but the Taxol can, too, and I can’t tell anymore what is being caused by what. I’ve had some brand new issues this time, though, so maybe it’s a combo?
Typically, it starts with my skin hurting. It begins in the back of my head, neck, jawline, and both the inside and outside of my throat. As time goes on, it moves down, and my arms, chest, abdomen, and lower back all begin to hurt to the touch. After that, I have pain in assorted bones and joints- typically knees, hips, ankles, and spine. Last round, I also had extreme weakness in my quads for a few days. On top of the pain stuff, I usually have high heart rates, shortness of breath, general weakness, and fatigue.
Things started off the same this time, but yesterday morning I woke up to excruciating pain in my calf. It was so bad that for a second I was afraid it was a blood clot, but then the pain/spasm extended all the way up into the entire back of my leg, to the top of my hamstrings. Once that let go a little, I realized I was having pain in my right eye, and that it was oozing. I’d had mild pain in it the day before, as well, and assumed I was getting a sty from my eyelashes falling out (which I still assume is the case). Then, I felt very, very sick. My eye was running, my nose was running, I was absolutely pouring sweat, and then it felt like very bad things were going to happen with my stomach… I went to the bathroom, but luckily did not throw up. I did, however, feel like I was going to pass out. After that calmed down, I realized I couldn’t see out of my right eye. With that eye both open and closed I saw a glowing yellow iris, and that’s all I could see. It looked exactly like this, except yellow:
That was pretty scary. But then… it just magically went away and I could see normally again.
I spent most of yesterday with extreme weakness and pain, and today has pretty much been the same- but fortunately without the early morning insanity.
Chemo is weird. There are many different kinds, with many different possible side effects. Some people are able to function pretty normally, others are extremely sick. Some of my side effects have been bad- really bad, and there have been plenty of days with tears and despair, but even still, this is doable. If you find yourself in a situation where your doctor recommends chemo for your best chances at living a long life, please do it.
If you’ve been reading my blog from the start, you know that I fought and resisted and agonized about doing chemo, but I’m doing it. I’m almost done doing it! And I’m certain that if I can get through it, you can, too. It’s hard, and at times absolutely miserable, but it’s not hard or miserable the WHOLE time. There are breaks.
I’m very much looking forward to being done, but if I had to do it again, I would- and I’m saying that the day after one of the absolute worst days I’ve had!
In other news, our friend Audré made me this awesome pop-up Mike Patton card. We have all found it very entertaining. 😋 🤘🤘🤘
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