First chemo infusion – recap

Have you wondered what chemotherapy is like? I had never seen it first hand, just in a few episodes of Breaking Bad. Here’s a recap of my experience.

9:05am. The nurse places a heating pad on my forearm to get the vein ready. She hands me 4 pills for nausea and I forget what else and takes my vitals. I’m then walked through what’ll happen in terms of the day and details.

The chemotherapy protocol I’m on is called R-CHOP. This is a cocktail of 5 drugs each with a different function to combat the cancer. The tl;dr is CHOP targets fast-dividing cells (including healthy cells), while Rituximab targets the cancer (B-cells) more directly.

Before we get going with the real drugs we start with an infusion of benadryl. Benadryl? Turns out the first drug, Rituximab causes severe allergic reactions, hives, rash, hot flashes, in 30-90% of patients (gotta love the precision, anyway turns out I’m in the non-reactive group). What I noticed was a burning sensation in my arm when the benadryl was infused. They slowed the drip rate and that seemed to help. I then got loopy/drowsy for about 20 minutes as was expected.

The nurse was ribbing me for not taking the “chemo class” which is kind of mandatory/strongly encouraged prior to starting treatment. These happen every Wednesday. I decided if I have a week left of pre-chemo strength I wasn’t going to waste my time on a class – I’ll experience it soon enough. So I googled it and read the pdf in 10 minutes. Still, she didn’t react well to my breach of protocol. I do appreciate medical professionals following protocol so no issues, and she turned out to be great otherwise.

She leaves the room for a bit while flushing the line with saline. A moment of solitude. Then it just happened. I’m overcome with a tsunami of emotion and break down weeping like a child. Why – here’s a dissection of the layers:

  • Poisoning a strong body I’ve built from scratch. Friends who know me as an adult know me as a healthy guy, intense competitor. But they don’t know that I suffered horrible asthma as a young boy and spent my life after age 12 setting up systems to overcome really severe asthma. I recall the day vividly. I was running home in my brown dockers, a white gap short-sleeve button down with one of those old school damp orange life-vests slung around shoulder from a sailing camp I was taking (I was quite a sight back then). Panting I lunged through the door and collapsed on the sofa, staring lightheadedly at the white ceiling, gasping for air as if through a cocktail stirrer. I ran about a block. The sense of vulnerability and weakness was awful, terrifying. I resolved never to feel this way again. I didn’t know how I would do it but I resolved to just get stronger. As part of this new mindset I would oftentimes do things just because they were hard, to remind myself that life is struggle. I don’t value convenience and comfort, in fact being in these situations makes me anxious (like being in people’s homes where they just sit on the sofa and watch TV). Another aside here, if you want to get under my skin you should call my physical abilities “talent” or genetics, or some other BS. I get why this happens because sometimes people think I get a lot done with little effort (like I’ll sign up for a race last minute and do fairly well). But what they don’t realize I’m relying on decades of hard work to have built a baseline that allows me to quite foolishly train less than my peers . And I do it more for the sense of struggle and competition than for actually breaking a record. I like to think of it as the physical equivalent of living off of compound interest vs. working harder day-to-day to make ends meet. Nope. whatever I’ve done physically is purely the result of decision and commitment at a young age. That’s the secret. Commit.
  • Relinquishing control to doctors. I don’t do well with not understanding every detail of a plan, with blind faith. But I have no choice here regardless how much I want to read up on things. The alternative emphasized by two independent medical opinions is that this is fatal within a year.
  • Admitting I’m sick. I took prednisone as a kid for my asthma to reduce lung inflammation. Whereas for decades I felt like I reached escape-velocity on medical issues it was like I was pulled right back to the hard earth. Whack!
  • The dance of weight and lightness of being.  My universe exists within the dark confines of this body, this skull. When I go then the universe as I know it goes too. I feel the gravity act on my body, pulling me into the chair. Of course I know the world will continue without me. Nevertheless my cosmos will die if this plan fails. It all hinges on this imperfect protocol, on messy medical statistics. If this fails all of it goes away: no more newtonian physics, space, electric purple flowers, hugs, language, songs, Saul’s golden locks, Lev’s joyous screeches, Lua embracing my leg, Michelle’s sweet voice saying ‘Ari’…no more grand ideas, tasting food, smelling thanksgiving, strategizing, breathing fresh air, walking through gardens…no more hypnotically staring at dust particles diffusing in a ray of sunlight. Game over for me, and a wake of hardship/sorrow for my family and friends. Ugh!

So I’m now literally injecting myself with poison to kill the cancer faster than it kills me. It’s real and it’s a needle prick. This flies in the face of everything I know, all I’ve built, all I love. It’s as counter-intuitive as it is rational and necessary. The paradox and the reality of it hit me like a punch to the stomach.

Staring at the floor I see those distinctive black nurse clogs through my teary peripheral vision. She backs away tactfully. I take another moment to compose myself. Then I look up. Ok, let’s do this.

Nurse hooks up the Rituximab. I pick up some literature she printed out at my request. I pick it up and the second line reviews the side effects. I fixate on the second line in what seems 94 point font “SIDE EFFECTS CAN INCLUDE DEATH…”. I stop there, putting the sheet down. My inquiries aren’t helping the current situation. I try to relax.

The next few hours were really quite dull. The drugs didn’t hurt. Actually I could feel them acting on the tumor site as kind of a sharp tingle which actually was a good feeling. Maybe it was working. The nurse mentioned at the outset that some patients have this sensation.

Michelle takes the nurse aside. She heads to the pharmacy and returns with some ativan to ease the anxiety. I’ve been aware that my hand has been mostly clenched in a fist for the better part of the past couple hours. I shake my head no, I want to feel. I’ve always broken distance runners into two types: dissociative vs. associative, the key difference being focusing on the body vs. on other stuff to distract from the pain. I tend to be in the strongly associative group, I like to know what’s going on and feel the experience.

And now I’m feeling my bladder so I head to the bathroom. I walk very slowly, not because anything really hurts but because I’m just uncertain about everything. What the fuck are these liquids going into my body, what are they exactly doing, what should this feel like? So I amble to the bathroom wheeling the IV pole with all the beeping machines, no doubt looking like a cancer patient. I make eye contact with the other patients – we’re all in this together. our looks communicate a lot, no words. It’s a nice feeling to connect.

As I sit back in my plush chair I figure now’s a good time for some external stimuli. I put on my headphones and throw on a spotify meditation playlist. I brought a few books not knowing how I’d feel. I pick up The heart of understanding by Thich Nhat Hanh. This book has been with me a long time but I always find some snippets worth re-reading.

There are three kinds of gifts. The first is the gift of material resources. The second is the gift of knowhow, the gift of the dharma. The third, the highest kind of gift is the gift of non-fear….he continues….In Buddhist meditation we do not struggle for the kind of enlightenment that will happen five or ten years from now. We practice so that each moment of our life becomes real life. And, therefore, when we meditate, we sit for sitting; we don’t sit for something else. If we sit for twenty minutes these twenty minutes should bring us joy, life. 

So that’s what I tried to do the rest of the session. Be present in the joy of the now, the joy of doing, of being. I breathe and send positive energy to my body. Try to feel the drugs working on the cancer. Be in the moment. Easy to say and hard to do. If I can face this fear I can face anything in life – what a gift to face it. Really.

3:30. The nurse pulls out the IV. You’re done. I take a great breath and sit for a few minutes taking stock of my body. Doesn’t feel too out of whack. No nausea, just tired. I put on my shoes it happens again. No warning. I weep. I don’t even try to fight it. Michelle hugs me tight. Again, those same mixed emotions but this time with some amount of satisfaction for getting through… whatever it is I just did. An ironic sense of relief on top of it all.

Round 1 done. 5 to go.

Reading while I get infused