Going Down the Rabbit Hole: My First Chemo Treatment

Hodgkin’s Lymphoma has an extremely high cure rate, with 90% of patients living cancer-free 10 years after completing treatment. The treatment is very protocol-driven with few variables. It entails several rounds of chemotherapy and, in some cases, targeted radiation after chemo. It is treated with a combination of four chemotherapy drugs—adriamycin, bleomycin, vinblastine, and dacarbazine, referred to collectively as ABVD for short—administered intravenously on an outpatient basis.

I received my first chemotherapy treatment on Thursday, July 21st, 2016. Chemo was administered every two weeks thereafter for five months, for a total of 12 chemo treatments (or six rounds; one round = two treatments). I did not require radiation.

The morning of that first chemo treatment I was a complete wreck. Even with all my internal freaking out since my diagnosis, I had actually been holding it together pretty well until that point but I did NOT want to go to that chemo appointment that morning. Everything treatment-related that I’d had to do up to that point had been reversible, including getting a chemo port implanted in my chest the day before. Chemo, however, was not reversible. Chemo was the point of no return—I would really and truly be a cancer patient. Starting chemo felt like stepping off of terra firma to fall down Alice’s rabbit hole into a topsy-turvy, unknown, unpredictable world. I had closely witnessed my brother and a good friend go through chemo and I didn’t want to follow them down that rabbit hole. I didn’t want to get sick, lose my hair, or interrupt my life, all of which I knew chemo would require of me. No, thank you!

So yes, that morning as I prepared to go to the infusion center at a local hospital, I was just a few degrees away from a panic attack. Overnight I’d had terrible joint pain, especially in my hands, for no apparent reason. I’d also kept waking up and tossing and turning, my mind in overdrive about what was to come, which didn’t make for a good night’s sleep.

I went through the motions of getting ready, trying to ignore the extreme anxiety bubbling inside. I knew I’d be at the infusion center for at least a couple of hours so I packed a tote bag full of things to read plus my laptop. I made sure my phone was charged. I chose an outfit that would both be comfortable and give the nurses easy access to my chemo port (cropped yoga pants, flip-flops, and a scoop-necked t-shirt). I dutifully applied lidocaine cream to the skin over my chemo port to numb it, as instructed. These were all things I could control—the only things I could control, in fact—and I clung to them.

My friend Mark drove me to the infusion center that morning and kept me company during the chemo session. I was still a wreck when we arrived but I tried not to show it. I think Mark saw through my act but kindly didn’t call me out on it.

After a few minutes in the waiting area, a chemo nurse named Ellie called my name and we followed her into the infusion center. We chose seats in the second “bay,” two reclining chairs next to each other, while Ellie got some supplies. Knowing it was my first chemo appointment, she explained everything she was doing and what I could expect at each step.

The first item of business was to access my chemo port. Ellie cleaned and sterilized the area, stuck a special IV into my chemo port, then secured it with a large patch of medical tape. (Check out Figure 3 on this web page to see what I’m talking about.) The IV tubing dangled down from the oversized thumbtack hooked into my port, giving the appearance that a small animal was suckling at my breast (even though the port was just above the breast and I was fully clothed).

“Take a good look,” I said to Mark. “It doesn’t get any sexier than this.”

Next, Ellie brought a handful of fluid-filled IV sacks and started hooking me up. A saline drip to keep the IV and port from clogging whenever something else wasn’t being administered, and steroids and anti-nausea meds to mitigate the chemo side effects. Once those had made their way into my system, which took about 30 minutes, she brought out three huge syringes that contained the first three chemo drugs, each of which had to be pushed in slowly by hand over a period of several minutes. One of them was vivid red and turned my urine orange for the rest of the day.

One of the drugs, bleomycin, is known to cause an adverse reaction in some people, so Ellie injected a small test dose into my arm first, explaining before she did so what a reaction would feel like. Within 30 seconds, I knew something wasn’t right—I just felt funny. Sixty seconds later or less and I was having the full reaction Ellie had described: shortness of breath, a feeling of pressure on my windpipe and then on my chest, and my face suddenly felt flush and sweaty. I turned to Mark, eyes wide, feeling panicky.  

Ellie was on the other side of the room getting some supplies out of a cupboard. I called out to her with as much breath as I could muster that I was having a reaction. She and the other nurses reacted immediately. Ellie and two other nurses rushed over to me, one using a machine to check my vital signs, one switching out my IV, and the third injecting a vial of Benadryl into the IV. The doctor on duty arrived a minute later. He got a report from the nurses, checked my pulse, asked me some questions, and shone a small light into my eyes. It was all somewhat scary but I felt reassured by how quickly everyone had responded to my distress call.

The Benadryl took effect very quickly. It made me feel a little dizzy and very sleepy but it also kept the reaction to the bleomycin at bay. (It also made me cold. Note to self: bring a blanket to the next chemo appointment.) The doctor explained that since the goal of my treatment regimen was a cure, I had to receive the bleomycin. That meant that, going forward, I’d have to get snooze-inducing Benadryl with every treatment. To me, this was another (albeit) small annoyance caused by cancer, since it meant I wouldn’t be able to drive myself to and from future chemo treatments. Sigh.

The remainder of the appointment was uneventful—and not just because I slept through it thanks to the Benadryl. After about 30 minutes and some more steroids, Ellie administered the bleomycin slowly from a big syringe, followed by the remaining drugs. The last drug, which was in a large bag hung from the IV pole, was swathed in a fluorescent green plastic sleeve. It was sensitive to light and the green sleeve protected it while it hung there on the pole. I learned later that that particular drug is so toxic that chemo nurses wear double gloves when handling it to protect themselves from potential leakage, since the drug eats through any bare skin with which it comes in contact. Yes, that is what was put into my body, directly into a vein next to my heart, in fact. Awesome.

When it was all over, we went back to Mark’s house, which was close to the hospital, and I went straight to sleep in the guest bedroom. I just felt so… drugged. My phone kept buzzing with calls and text messages from friends and relatives wanting to know how it had gone. I appreciated their concern but was also annoyed by the interruptions when all I wanted to do was sleep. I finally dragged myself out of bed, found the phone where it was lying on a table across the room, and put it on silent.

When I woke up, I thought I had probably been sleeping about an hour. It had actually been three. I went for a short, very slow walk in the July evening heat and sent a group email to everyone who had been trying to get in-touch with me all afternoon. I had no appetite but managed to eat some rice Mark had made. I was tired and my brain felt a little foggy but otherwise I was not much worse for wear. A little while later I drove myself home and slept for 11 hours that night.

For all my meticulous preparations that morning, I was ultimately unprepared for what really happened during the appointment. Of course, I couldn’t have predicted the reaction to the bleomycin or the fact that I’d need Benadryl and therefore sleep through half of it. But even so, on a practical level, the whole thing just underlined how much I DIDN’T know what I was getting into when I showed up for chemo that morning. I didn’t pull anything out of my bag of stuff to read, didn’t use my laptop, and didn’t use my cell phone. I also needed a drink and a blanket, neither of which I had brought. Great planning!

So there it was, my first chemo treatment, finished. I had unwillingly followed Alice down the rabbit hole and there was no turning back now.