April 10, 2023
Sitting here getting my 3rd round of chemo. The last round was more tolerable than the first in one way, but more difficult in other ways.
I didn’t have a repeat of feeling like I had food poisoning, but the heartburn on days 5-8 was terrible, and the fatigue never let up. I had hoped to have those few days of feeling normal again before showing up for the next round, but unlike round one, that didn’t happen for me this time.
The fatigue feels like someone unplugging the power, a sudden shut down of all your energy. At times I didn’t even have the strength to hold my phone or finish a sentence.
Fatigue itself wouldn’t be such a bad thing if I could just sleep through it, but even when my body is shutting down, my mind is alive, wanting to talk, work, or read. It’s feeling too restless to sleep but too clouded to function. Sort of like being in a coma hearing everything going on around you but feeling unable to respond.
When we arrived at the doctor’s office, normally we wait in a chair until the doctor comes in to talk about how the round went, but this time I just wanted to sleep until he got there. My prayer was that he would again know just the right thing to say to help me face another round. He’s proving himself to be reeeeeeally good at doing that.
He asked how I was doing, and I ran down my list of side effects that I had been dealing with. My biggest complaint was that I didn’t get the few days break before showing up for the next round that I thought I’d get. I had been feeling worried that if it keeps getting harder and lasting longer with each round, I don’t know how I could do twelve.
He smirked and said, “Everything you’re saying is textbook. Sounds like you’ve been doing a lot of reading?”
(I’ve actually stopped reading so much about what to expect, since learning that the treatment goes so differently for each person, and I’m better off just taking it as it comes.)
But really – How did he know he could get away with teasing me like that? I just laughed and retorted, “My side effects are NOT psychosomatic.” He chuckled and then started addressing them one by one, things we can do to dial it in even more, to make each round more tolerable.
More about round 2:
My hair started falling out in handfuls. He had said that I probably wouldn’t lose my hair but thinning is normal. But the cool thing is that my hair is generally super unruly. I have straight hair on top and curly hair underneath, so it’s always a battle to either get the top layer to play nice, or straighten the under layers, but most of the time it just ends up in a pony tail.
Interestingly, the hair that came out seems to only be the straighter, unruly layer! All that’s left behind is the fun curly stuff. Yay! I’ve always wanted to be able to just scrunch and go, but that top layer was always needing so much more attention.
Being much thinner though, I needed to cut about 4 inches so the ends wouldn’t be so sparse. So I put it in a loose ponytail, and chopped it myself to land about shoulder length. I didn’t have the energy to go to a salon. After a couple days I realized that it would be better with some layers so I added some in the back. With less hair to fight, and only curly hair left behind, my hair has been much easier to manage. We’ll see how it goes. I’ll probably need to get a professional to clean it up properly at some point.
I should try smiling though…
Back to the doctor’s visit. I asked him how much time I should feel better between treatments, and he said I should only feel side effects for the first 5 days. I shouldn’t be suffering all 14!
Again, he knew just what to say to give me some encouragement. He said what I experienced in round 2 still isn’t quite what he has in mind for me. He’s reducing the dosage by another 5%, plus adding another medicine and a natural supplement to help with the energy problem.
So much of this battle has been about experiencing weird things and not knowing how much of it should be just tolerated, and how much just really isn’t necessary.
He also asked me if I wanted to skip a week, to regain more strength before the next round. I didn’t know that could be an option! So that was encouraging. But, we’ve got some things going on next week that would make it impossible to come in for treatment, so we decided to keep today’s infusion on the plan, and maybe consider postponing round 4 if these new adjustments don’t do the trick.
By the way, my CEA levels are down again, this time from 2.7 to 1.5. Normal is anything below 2.5. So my bloodwork at least shows no sign of cancer, but not being conclusive by itself, treatment will continue as planned at least until I get my next PET scan, which will happen after 8-12 weeks of treatment. (I just finished week 4.)
I’ve been gifted a few different blankets from friends who want me to have some extra comfort during treatments. Today I’m sporting the blanket covered in positive words sent to me from my dear friend Stephanie Francom. Thank you Stephanie!
Oh – I also wrote my article about the day I got word that I’m in complete remission, with no evidence of disease. How we felt, what we did to celebrate, and I’m holding onto it and will send it out when it is true, God willing. This is just me striving to NOT be the limiting factor in what He can do for me. (I’m talking about Rare Faith – the kind of faith that causes things to happen.)
Thanks also to all my friends for your continued prayers and support.
Related: Round 2 is in the Books