Chemo Rounds 1 and 2
or... the update I've been meaning to write for two months
“[this drug] is learning me his experience.” - (paraphrased) Yogi Berra
I’m sitting on my couch. It’s a Friday night, and I just took the fourth dose of Round 3 Chemo - of which there will be 33 total - which brings my count to 69 doses consumed thus far.1
The doses are spread over two weeks per round - nine days of twice/day followed by five days of thrice. Then 14 days of rest before the crescendo starts again.
The first round started in January, and I’ve been meaning to write this post for the duration of that drumbeat. Each day passes with me thinking I really need to get the blog up, need to get people updated.
But it turns out talking about oneself is hard - requires a leap of faith there are people interested, people will engage, or at least indulge, in the details of my journey2.
And I think, subconsciously, I’ve been avoiding that, in part because it signals this is the kind of thing people would care about. That my diagnosis is dramatic enough, serious enough, concerning enough. Or that people care about me enough, I’m interesting enough, compelling enough.
And it turns out embracing both of those - that I actually am dealing with A Very Big Thing, and that the people in my life may genuinely take interest - has taken some work.
But I’m here now. With a not-going-to-overthink-it update on how I’m doing.
So, without further ado… some FAQs.
“Katie, how are you? Are you ok?”
Yes, I’m ok. The chemo I’m on (Capecitabine and Temozolomide) is less toxic than an IV infusion, and the side effects so far are relatively minimal.
“Ok, but… what are the side effects?”
The worst of it has been fatigue - I sleep a lot at night, and often need (or badly crave) afternoon naps. Some of this is the drug itself, and some attributed to an emerging anemia. None of it is dangerous, or out of the ordinary for these drugs.
There is some mental fog - it builds as the two weeks “on” progress, though each day seems to be a little different. My executive skills seem to be most impacted, so I’ve been working on simplifying tasks so I can still be productive. For example: I don’t do a full week’s worth of meal-planning, just head to the grocery store more frequently and get what I know I’ll need for the next few days.
(This is made easier by not having a job, and therefore lots of time. More on that later.)
I was getting headaches, but those seem to have diminished. I’ve experienced two ocular migraines, which is a trip - what I’ve heard mushrooms or acid are like, though without the accompanying euphoria. Bummer. And I’m generally achey, my skin is dry… you know, a bunch of little stuff that isn’t fun, but also isn’t terrible.
The most concerning right now is what may be emerging peripheral neuropathy. The jury is out on whether a) that’s actually happening, and if so b) how serious it is, overall.
Which is a good time to remind everyone that, while I am in excellent care and have done extensive homework, all of this - the treatment plan, the treatments themselves, the expected course of the disease - is a total unknown until and as experienced.
It’s not super fun, and the psychological impacts are real (more on that later).
But I’m adjusting to the experience, and very aware it’s really not that bad.
“Ok, what about your job? Are you looking for something?
As you may know I lost my job in November when my company unexpectedly shut down. The start of chemo means I can’t work full time, so I’m taking this chapter to focus on health, and not actively looking for a new role.
I’m doing ok with that, and grateful for the support systems in place to make it possible.
“What are the next steps?”
I have an MRI scheduled March 29th to see if the chemo is having an impact on the tumors on my liver. The ideal state is they are stable or shrinking. If that happens it will be a discussion on whether to do surgery to remove them, or keep the chemo going.
If there is still growth it’s not clear if we continue the chemo to give it more time, or move on to the next treatment option.
I am also monitoring the DCIS, and will know by end of March if that remains stable.
There is a much more detailed, extensive decision tree in place - a lot of “if this, then that” - but, for now, the focus is the next 12 days of active treatment, then the scan.
“What can I do to support?”
First - thank you. I only type that hypothetical FAQ entry because I’ve been fortunate enough to receive enough people asking it directly to know this is on folks’ minds.
Second - the best thing right now has been patience. The past few months have been a major shift in just about every part of my life, and it’s made it challenging to know what’s what. I appreciate any grace / flexibility that has, or will be, extended.
Third - connecting with people is extremely therapeutic - and also challenging. I’ve been terrible at texts and phone calls, and only recently learned the art of “I will make plans, but may have to cancel”.
I’m going to experiment with this blog in the coming months to try and bridge the gap between capacity and need — and hope to see you here.
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“Anything else?”
As a reminder, while this cancer is incurable, I intend to be keeping it at bay for some time. So this blog will include medical updates - but also life updates, and maybe even some advice I’m learning along the way.
The first of which is: When a friend meets you for lunch and says “Wait, I just have to capture this moment, you are total vibes right now.”
Just say “yes” and then “thank you”.
Each dose is multiple pills, so that’s actually [does math] 150 pills, exactly, down the hatch to date as of writing
Sending Good vibes your way from the EC, no, not the European one, the other EC, across the continent from the WC. No wait, I'm not saying The entire PC is a WC ! I mean, er, okay, I've learned my lesson for today: don't reply to a blog post in the morning until you're awake enough to have brushed your teeth.