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.