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.
A phrase that you hear a lot from people, when you let them know you have cancer, is: “please let me know if there’s anything I can do to help!” Which totally makes sense. It’s hard news to process, and it’s hard to know what else to say.
An interesting twist, for me, is that I myself really find meaning in helping people. Various personality tests have revealed this for me, such as the Enneagram (in that test, I’m “type 2: the helper.”) This means, for me, it’s a bit of a paradox. You can help me — if I feel that I am helping you! This is part of the reason why I’m maintaining this blog: I’d like to offer my own journey with cancer as something that can hopefully help anybody else who gets a cancer diagnosis.
But I’d also like to help people avoid getting cancer, if at all possible. So, honestly the best way you can help me, is to please be inspired by my experience to do something (big or small … something!) to minimize your cancer risk. I’ve been absolutely delighted to hear about some folks who decided to get colonoscopies, after hearing about my situation. Also, I’d love it if you can help share my story (this blog, and my colon cancer walk page) with others.
Early on in my radiation treatments, back in May, I got stuck in a Fred Hutch parking garage due to a mechanical issue with the garage. There were all these cancer patients and their caregivers, stuck for many hours while the issue got fixed. I was fuming with rage about this, and I struck up a conversation with the woman next to me.
On April 2, 2024, I got a call I had been anxiously awaiting. A few days previous, I had a colonoscopy that revealed a large growth in my rectum: much larger than the polyps that can be removed during the procedure. The doctor had sent a tissue sample in for biopsy, and I knew she’d be calling at some point on April 2.
And I got the call, in the mid-morning. I was in the middle of a meeting at the time, but I stepped away to take the call. The doctor explained that the biopsy revealed that the growth is carcinogenic: in other words, I have cancer. She said the next step — happening that very afternoon — was for me to go get a CT scan, to determine whether the cancer had metastasized.
After the call ended, I had this very interesting experience. I felt like I was floating, up somehow, and observing my life. I considered the meeting I had just been in, with puzzlement — people had all been talking very fast, and using so many acronyms. So much focus on these very granular details that don’t ultimately have life-or-death significance (a day in the life of a typical technology firm). None of this seemed to matter, compared with the news I had just received. I thought about how I’m usually one of those people quickly spouting out acronyms in these meetings. Indeed, I can be, admittedly, a total firebrand at work — I dig in and debate! About .. acronyms.
I started noticing hair coming out on Sunday. Yesterday, I noticed more coming out; I’d run my hand through my hair and there would be a few strands on my fingers. Then I was noticing the hair strands other places. I checked my pillow: yikes. Lot of hair on there. I then decided: need to shave my head sooner, rather than later.
So, shaved it off last night.
Don’t think I mentioned before, folks in our neighborhood have been very kind. Word has spread around about my diagnosis, and neighbors have been dropping off meals for us. They even know about my crazy vegan diet (with occasional eggs). We received a delicious meat-free shepherd’s pie, among other fine meals.
Off week going ok thus far. I really do not like giving myself the nightly shots, and I’m wondering if I have to keep doing that for the remaining eight cycles. I’m also wondering, with trepidation, if the cycles are going to get worse from here…
Some folks have been reaching to me with concern after my last post. I’m ok! Slept very well last night, and I’m at work this week. Looking forward to this, an off week — a blessed break before infusion #3, which will be happening Mon the 19th.
I was able to connect with a nurse at Fred Hutch earlier today and talked through all of the “weirdness” I struggled with last week. That was an incredibly helpful call. First, just in validating that I’m not alone in this struggle to even articulate what the heck is going on. the nurse confirmed for me, this is a normal struggle for chemo patients. Also, she provided some tips on what I should actually be worried about. Because that’s always my question, with any new symptom or sensation – do I dismiss this, or look into it further? The numb lips, she said, is normal with oxaliplatin. With the port, yeah, I’m going to feel it; it’s ok (the main thing with a port is to look at the skin area for signs of infection — there are none). And she gave some other practical advice as well, for which I’m very grateful.
Also, I think hair loss has started for me .. just a bit. Yesterday I put product on my hair (just to get it out of my eyes) and then I noticed that there was a lot of hair stuck to my hands .. the product is sticky, but that’s never happened to me before. This morning, I’m noticing more of my hairs .. on my phone, in random places. I’m assuming this is the beginning of chemo hair loss, so I’ll probably shave my head at some point this week. This isn’t really concerning for me; I’ve shaved my head many times in the past. Just something I’m noticing.
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.
Quick note here to say the last several days have been great. This last week was my off week (no infusion). It’s an on-again / off-again schedule. I was pleased to see that I felt basically all back to normal around Wednesday last week — that was one week after pump disconnect day. Energy level, appetite all back to normal. It is very nice to get a break!
It was great to see my sister Katy over the weekend. Katy introduced me to a product category I had never heard of before: hop water. This is just sparkling water, flavored with hops of various kinds. It seems many major beer brands have jumped on this bandwagon. I do find it most refreshing — thanks Katy for the tip!
In other news, we have been binge-watching Stranger Things (Katy and Daniel joined us for an episode!). Such an exciting show necessitates lots of popcorn. Our dog Sunny has a total obsession with popcorn. As can be seen here; he’s looking at the microwave with maniacal anticipation, as the popcorn pops away…
My next chemo infusion is tomorrow, and I’m sure I’ll be back to the world of fatigue at that point.
As I look back and try to recollect last week, it’s mostly a blur: I don’t remember much. I understand now what chemo fatigue is. For example. Sunday morning, I woke up feeling pretty good; I decided to take the dog out for a walk. After five blocks, I was wiped out, and needed to head home. I collapsed on the couch and couldn’t get up for three hours.
This is my “off week” (the infusions are every other week). I’m back at work this week, which is challenging, as I certainly don’t feel awesome. While the fatigue has diminished, it’s still a thing: I need to lie down often.
The olanzapine they prescribed (mentioned in my last post): me no likey. Yes, it knocked me out at night, but I was still a zombie from it well into the next day. And that was just half a pill. Not taking that anymore.
Not everything is bad. Chemo seems to enhance my sense of smell; I’m noticing various smells that seem new to me. Also, it gave me a strong craving for sautéed mushrooms. I cooked up mushrooms, garlic and greens over the weekend and it was unusually satisfying.
I’ll tell you, the worst thing is when I just can’t explain what’s going on. Such was the case last night, when I had a puzzling mixture of sensations: sore throat, watery eyes, blurred vision, numbness in legs. And no appetite. None of this made sense, and I ended waking up at midnight in a full-scale panic attack, struggling to describe any of this and wondering if it was serious.
I eventually got back to sleep, and I’m ok now. I’m realizing this is part of the process. Chemo causes a lot of intense stuff to happen in the body. And the side effects aren’t always easy to explain.
Over the past week, I switched my phone background to this 1904 painting by Diego Rivera. I’ve been staring at it a lot and finding it comforting — something else I can’t really explain. So be it; I’ll embrace the mystery.
foiblish 