Wednesday before last, I went through an abrupt gastrointestinal shift. Two and a half weeks after the preceding infusion, I started experiencing nausea, diarrhea, and considerable loss of appetite. I hadn’t experienced any of these symptoms (other than minor nausea) with chemo, previously.

The following night was a tumultuously sleepless gastropocalypse with intense, recurring bouts of diarrhea. Nausea got increasingly worse, until I eventually vomited multiple times, in rapid-fire succession. I don’t vomit very often (it’s been years), but I just don’t recall it ever being this … extreme. I got hot and sweaty, and my eyes and nose were both streaming. My throat was sore for hours afterwards, like everything had been chafed raw inside.

Delirious at 4:30am, desperate for a distraction, I stumbled upon “Believercise.” And verily, it didst suffice to bemuse me, and my soul was calmed. Somewhat.

I headed to Fred Hutch yesterday for chemo infusion #4, accompanied by my sister Katy. Lo and behold, after they drew my blood, they determined my white blood cell counts were too low for me to proceed with an infusion yesterday. They went ahead and rescheduled the infusion for next Wednesday, allowing time for my body to naturally build back up its white blood cells.

(By the way, check out Katy’s latest blog post about hiking, here!)

My care team is also going to have me increase the number of Nivestym shots that I self-administer, from 5 daily shots up to 7. While I don’t particularly enjoy sticking a needle into my belly (and the subsequent mild flu-like sensations, which last for 30-60 minutes), I understand the reason for doing this. I don’t want any future infusions to be canceled and rescheduled, if at all possible. This makes trying to maintain a work schedule incredibly difficult — not to mention the fact that Katy traveled up from Eugene, OR, for yesterday’s canceled appointment. Fortunately Katy was able to find a train south yesterday afternoon, but I still feel bad about the inconvenience of the cancellation.

I was super-wired during the infusion on Monday. That feeling got pretty intolerable near the end of the irinotecan infusion. I was exhausted, yet very jittery. The nurse checked on me and seemed concerned. After someone else came in and they noticed my slurred speech (this did happen for me at the end of my first irinotecan infusion), they decided to give me something to alleviate that (can’t recall what it was).

I slept ok that night, and then the past two days have really been all about major fatigue. It’s like I crashed from the weird all-day mania that happened on Monday. Yesterday and today, I’ve been too exhausted to do really anything. Haven’t checked social media, and have had a hard time replying to anyone. Pretty dense brain fog — particularly today. Went in and got the pump disconnected this evening — that’s a wrap for infusion 3.

Currently on the fence about returning to work tomorrow AM. If tomorrow is anything like today, I won’t be able to function at work. Will see in the morning.

Greetings from Fred Hutch. My third chemo infusion is currently underway. It is unusually cold in this room today. Also, they decided to try a “slow drip” approach to the oxaliplatin portion of today’s infusion “menu.” That means that the oxaliplatin (which is “notorious” for its side effects, as one nurse mentioned to me today) infuses at half the rate, and thus takes twice as long: four hours rather than two. While this makes for a very long day (looks it will wrap around 8pm), the “slow drip” approach helps reduce the risk of any the 10 million side effects popping up.

I decided to skip the icing (cryotherapy) today and see how that goes. Wearing the freezing mitts and socks for four hours — in an unnaturally cold room — is a bit more than I can take today. I haven’t been having neuropathy issues over the last few infusions. So, we’ll see how this goes.

This second run through the chemo gauntlet was different than the first: in some ways easier, but in other ways, more difficult.

• In general this past week, I did better with sleep than during the first infusion week. Well, except for last night. Very little sleep last night, and I’m not sure why.
• Because I slept more total hours this 2nd infusion week, the fatigue was less of an issue.
• Anxiety was my biggest issue over this past week. I had lots of different “weird” side effects (?) that I struggled to explain or make sense of. This is clearly a theme for me, in chemo. I’m not sure if other folks have an easier time of this, but I have often not been able to neatly capture my side effects in … well, in language. I keep reading through the list of common side effects for my chemo regimen, and it doesn’t really describe my situation. I’m not (thankfully) struggling with nausea or diarrhea. Instead it’s … intermittent weirdness. Sometimes my throat is very sore. Sometimes I am extremely thirsty. One day, my lips felt really numb most of the day, and there was sometimes pain and numbness in my neck. My port area has been … not in pain, per se, but I’ve been aware of the port, sometimes uncomfortably aware of it under my skin. Bowel movements have been quite painful (an “8”) but only for a brief moment. Sometimes there are intermittent heart palpitations … but is that just my anxiety? Who knows?! I did have what was likely another panic attack, a few nights ago.
• This time, the pump disconnect day seemed to be what other people describe — much of that day I felt just super-bad. Again not really fatigue .. I tried (but frustratingly wasn’t able) to sleep that day. Heart was racing. I felt dizzy, overwhelmed, bad.

I have continued to lose weight — down another few pounds this week. (I lost 5-6 pounds in the first infusion cycle). That is frustrating, because I feel like I generally have an ok appetite, and I’m eating! I’m putting a TON of time and attention into eating, actually, making sure I’m getting a lot of protein, healthy fats, etc. As the PA said in my last infusion day, I really don’t have much there on my body left to lose.

I bought a pair of pants a size smaller than what I’ve been wearing the past several years — and these are still too big for me. The weight loss is pretty extreme and very visibly obvious — a neighbor commented on it to me, the other day. I see myself in the mirror before getting in the shower and the skeletal figure I see in the mirror is honestly pretty disturbing.

I feel like I should sum this up on a happy note, but I guess that wouldn’t reflect reality. Not much ups to be honest. It’s mostly … downs. Chemo is not easy.

I started off yesterday with a blood draw — this is a standard first step for all chemo infusions. I was happy to see that all looks stable with my white blood cells and complete blood count (CBC), no concerning drops from two weeks ago.

Next, met with a member of my oncologist’s team, a PA. Very jovial, exuberant fellow, he immediately announced his amusement with how I had filled out my pre-visit questionnaire. Its first question is: “what is your primary objective in today’s meeting?”

My answer, in large, underlined letters, was:

REDUCE STEROIDS!!!

He came in laughing an “oho, I’ve got a feisty one!” laugh, and he said “ok, we need to frame this one. This is hilarious!” I didn’t find anything funny until he explained yes, no problem, they can cut the steroids in half, given the fact I didn’t really struggle with nausea during my first cycle. I guess my very direct comment stood out as something unique. So, that was great. Reduced steroids = less crazy = more sleep.

Things then got a little exciting during the oxaliplatin infusion.