Looking Glass 1 - Reports from my first infusion

Here we are, the place you never think you'll be, fully through the looking glass, 5 days beyond my first infusion of Chemotherapy. I've been thinking of this as my "Lewis Carroll" moment for a while now, feeling like life on the other side of an infusion would be this unknowable, lovecraftian experience full of cronenberg-esque body horror and aches and pains of untold proportion, but if you were looking forward to such descriptions, I'm sorry to disappoint you with how normal everything feels. I am mostly doing just fine.

Demystifying Chemo - Infusion Day

When last I wrote, I was in the calm before the storm, the "caesura" as I called it. I took a trip to Austin with work (I've started a post about that, will post it eventually, stay tuned), spent some time gathering some essentials, making plans, and ultimately resting up in preparation for the first infusion of the R-CHOP Chemotherapy regimen I've been prescribed. I'm picking up the story now on Wednesday December 7th, the date of that first infusion.

What you may know about Chemotherapy is that people sit in the infusion chair for a long time. What you may not know is what happens during that time, so let's taco-bout it shall we? I arrived at 7:15 AM, K by my side and our "chemo kit" (more on that later) in tow. The first step of any infusion day is bloodwork. Remember that port I complained about getting installed in my last post? Well I'm not complaining about it anymore, it makes the blood work SO much less unpleasant. It's like a little rubber bubble that sits underneath my collarbone, the nursing staff inserts the IV into it instead of finding a new vein every time, and frankly I can barely even feel the needle. So they hook up the IV, take some blood from it, and then boot me back out to the waiting room.

The reason they take bloodwork every time is that Chemo is a "bespoke" process, always made to order. They make up the batch based on my current body weight and height and blood work, so that it's hyper targeted, and so that it's safe. Once they had it made up, the nurse (her name is also K, so she's "Nurse K" from here on out) brought me back to my very comfortable, heated recliner that I'd spend the rest of the day in. Once there, Nurse K took us through what was about to happen.

A diversion - what is R-CHOP?

The initials that make up the acronym stand for each chemical involved in this treatment. They are: R= RituximabC= CyclophosphamideH= Doxorubicin Hydrochloride (Hydroxydaunomycin)O= Vincristine Sulfate (Oncovin)P= Prednisone (more info here)

I'll leave it to the NCI website linked above for the medically curious minds who want further information, but what's important to know is that the Rituximab is a very strong drug which can cause severe reactions, up to and including anaphylaxis, so the first time it gets infused, it goes last after the other drugs have been infused, and VERY slowly, to make sure I don't have one (spoilers, I didn't, not majorly anyway).

I took that diversion partially because that was what Nurse K was telling us, in addition to all my aftercare instructions. Trouble with this was, while Nurse K was taking me through all of this information, she was also administering my pre-chemo drugs which included Prednisone, Zantac, and a dose of Benadryl that could knock out an elephant.

I may have a few extra pounds on me right now, but I am no elephant.

I was immediately knocked out - mid sentence trying to ask a question slack jawed head nodding knocked out. Thankfully I have a partner who is a lawyer, and used to taking diligent notes. I continue to be thankful for her.

A short time later, I was gently awoken by nurse K, who was ready to start the first infusion of the C drug.

One tube at a time - hurry up and wait

The C drug is weird looking. It comes in a giant syringe, and it's bright, maraschino cherry red. Drugs C, H and O are the "typical" chemo drugs that cause hairloss and all that, but more importantly they're the ones that will attack the cancer in my blood stream. So, Nurse K starts injecting this cherry juice looking drug into my IV, and we're off to the races. Or, well, we're off to nowhere fast rather. It has to be done slowly. Fortunately Nurse K is chatty, and she and my K seem to get along, so we pass the time with friendly conversation.

The rest of the day followed the same course as we moved through drugs H and O (both a little less strange, just IV bags hooked up to the machine I was plugged into).

A diversion - my Chemo Kit

I mentioned my Chemo Kit above, so let's talk about that. I knew it was going to be a long day, so we packed some creature comforts. I brought my laptop (didn't use it), headphones, a blanket, some clementine oranges, a bag of caramel popcorn my coworkers bought for me, and a couple books. I also brought a buff that I used as a sleep mask for a while. Next time, I am adding to my arsenal with a "port access" shirt that a friend of ours who is an oncology nurse sent us, it has a slit in the chest where the port is so I don't have to keep stretching out my v-neck t-shirts. It's the little things, you know?

Rituxan - or how I almost scratched my scalp off

So finally, it was time for the R in R-CHOP, the Rituxan. This was the one I'd been warned about. Nurse K reiterated that she wanted me to be communicative about every change my body experienced, and off we went.

The first thing that happened was a crazy uncontrollable urge to itch my scalp. Even thinking about it now is making me itchy. I let Nurse K know, she came in and slowed the drip down, we waited for it to pass, and then we continued. That was how it went for the rest of the 3 hours in the chair it took to get through that one infusion. The itching would come in intense waves, I would scratch, we'd call Nurse K, she'd turn the drip down, and we'd continue. Eventually, my system caught up to the Rituxan and the itching subsided permanently.

Cute little sidebar - K was next to me the whole time, trying to get work done, but at one point I looked up and she was literally resting her hand on her chin and staring at me, watching for any sign that I was uncomfortable. I told her to stop being a weirdo and get some work done, but it made me smile. Still does.

So we finished up with the last infusion, and that was it. Homeward bound, chock full of chemicals.

Aftermath

I arrived home to a meal I honestly can't remember, but what I do remember is that my parents were there, they had taken our dog for the day, and they had dinner with us before I zonked out.

One important note - I was prescribed MANY things, but the only one I was supposed to be taking regularly was the prednisone, (the P in R-CHOP). I've taken Prednisone before for singing related things, losing your voice, trying to power through, etc. but I've never taken this much prednisone. Honestly, I felt like Superman. It was kind of strange, I knew I was supposed to be down and out, but the energy that I was feeling meant I needed to DO THINGS. I cleaned. I worked. I even got on the peloton for a bit. I kept waiting for the shoe to drop, to start to feel nauseous, but... I didn't. I ran the course of the prednisone, today is the first day I haven't taken it, and still, I feel mostly fine, albeit a bit more tired today now that I don't have a powerful steroid running through my veins.

So that's how it's been - no nausea, maybe a little acid reflux, haven't lost my hair yet (they say weeks 2-4 for that), no cronenberg-esque mutations, no nightmares of cosmic horrors untold, just business as usual, plus a great excuse to exist in sweatpants 24-7.

I'm told that the nasty side effects can still come, and I'm well equipped, between the Zofran that Dr. E prescribed, and the various CBD/THC/Melatonin products I can obtain now with my newly minted medicinal cannabis license, I have an arsenal to throw at any maladies should they arise, but I really am doing ok for now.

The next infusion may be different, remember I'm prescribed 4 full cycles, plus an additional 2 of the Rituxan, and each cycle gets harder to recover from. Somewhere in there I will lose my hair, and I very much am NOT looking forward to that. I have body image problems enough as it is, knowing I need to lose weight, I feel like I'm going to look like Baron Harkonnen from the recent Dune movie, but I'll get through that too.

For now, I am exultant that the mass in my leg has already shrunk in size to the point where I have a hard time finding it. Modern medicine is incredible, y'all.

Edit: so an update, I wrote this on Monday evening, the end of the first day off the prednisone. As if on cue, now that I've put out into the world that I'm largely fine, I started to have symptoms that the prednisone was keeping at bay. The nausea and acid reflux came first, which i was able to head off by taking Zofran. I took an edible that is 1:1 CBD and Sativa based THC, mixed with some melatonin, and that about knocked me out. Zofran can, and did, cause constipation, thankfully we have lots of different medicines for that on hand. I share this because I want this blog to be an accurate reflection of what I'm dealing with in case someone stumbles across it in the beginning of their journey. It's Tuesday morning now, I'm about to begin work, and between the meds I was able to take and the big hearty bowl of oatmeal k made me, I'm feeling pretty good.

Reflections

So now comes the part in the blog where I wax philosophic about all the things I'm learning throughout all of this. The first thing is, nothing brings you closer to your partner than a struggle you go through together. K and I have been through a lot, and maybe one day I'll write about some of those things, and through it all we've always come out stronger. This is no different, it's just an order of magnitude more existential than anything we've faced together. Mortality isn't something we've really wrestled with yet, and not that mine is in question but you start talking about Cancer, and well, certain conversations come up. But K and I, if we weren't bonded for life before... we definitely are now. I can't think of anyone I would rather have by my side in that chair, staring at me while resting her chin on her hand. I have had several people tell me that I seem like I'm doing well, how remarkable my attitude is, etc etc. Without K, that wouldn't be true.

The next thing, the thing that continues to be a theme, is the power of vulnerability. Do you ever get bored of your conversations with a friend, spouse, coworker, family member? Do you ever lament the monotony of day to day existence as we go about our individual corners of the capitalist grind that is American life in 2022? Try injecting a little vulnerability into your conversations, it'll change your life, man. I have shared, perhaps overshared (sorry, not sorry) what I'm going through with a lot of people. The result hasn't been people shrinking away as I might have feared, it's been people stepping forward. I mentioned in my last blog a renewed connection with a long held friendship, but I've also had friends stopping by left and right wanting to check in, see how I'm doing, drop off a meal, hang out with K for a bit. It's been amazing.

It also breeds authenticity. I believe when you express vulnerability to someone, whether they're someone you're close to in a personal setting, or they're just a coworker, you invite them to share with you their authentic selves. Most of the time, if they feel safe, they'll accept that invitation. I have had conversations with people I've known forever where I feel like I am getting to know them all over again, and with coworkers, even senior leadership at my company, where I feel I am getting to know them on a level I didn't think possible for a work relationship. I have had authentic, personal connections with people left and right, and for me, who is very much sustained by connection, it has been the salve that has kept me going, kept my positivity on the surface, and allowed me to continue to be confident in the end result of all of this.

This whole thing has become a giant thought experiment. How far can I push this? How much connection can I foster while I go through this? I reach out my hand in the form of this blog, and thousands of you grab it, so where can I go with this? Is there something gestating while I deal with cancer, something that will emerge beyond after this is over and carry my life forward with meaning? I think so.

Last night, K an I finally watched the Elvis movie. I liked it, it had it's flaws but overall I enjoyed it. There was a moment though, where the film dealt with the death of Dr. Martin Luther King Jr. Did you know he was only 39 when he was killed? 39. And still, the ripples of how he changed the world are yet to fade, yet even to be fully realized in many ways. He was only four years older than me when he died. That realization hit me in a pretty profound way, my life has been meaningful, of course, especially personally to me and my immediate circle, but all of this has me wondering if I have more to offer. If there's something else, some other part for me to play. Maybe it's connection, authenticity, vulnerability, made manifest in some teachable way. Maybe there's a way for me to keep living my story, sharing it, inviting people to become part of it, that can be useful in some way.

If you've been reading along with this journey, I'm grateful to you. I hope though, that it's more than just an update on how I'm doing. I hope you can take some reflection away from this. If you can, do me a favor - try trusting someone you normally wouldn't with something vulnerable this week, and if you feel so inclined, I would love to hear the results, share it as a comment or message me directly.

Til next time my friends, I'll be over here, beating this thing one karate R-CHOP at a time.