chemo /// the program

I had been feeling pretty low in the days leading up to starting chemo, but I woke up on the first day of my program feeling much better. In the handwritten journal I had started keeping I had written "Day 1 ... ready and positive".

turning up to the hospital for Day 1

Day 1, 1 of 63. This post will try to describe what those 63 days looked like in terms of the treatment I received, tests carried out, and at a high level how my body felt during the different phases. I will save a more in-depth description of the physical side effects I felt for another post in an attempt to keep the length of this one reasonable.

CHEMOTHERAPY

Sadly, most people are at least vaguely familiar with how chemotherapy works due to the prevalence of cancer these days. But, to quickly level set, chemotherapy refers to a group of cytotoxic drugs often given intravenously but also increasingly orally with pills, which cause malignant cancer cells throughout the body to stop dividing and die. Other treatments like radiation, immunotherapy, or hormone therapy were never part of the discussion for me or offered at that point.

THE COCKTAIL

The cocktail of chemotherapy drugs usually used to treat testicular cancer patients is called BEP:

• Bleomycin (blee-o-my-sin)

• Etoposide (ee-top-o-side)

• the Platinum drug called cisplatin (sis-plat-in)

I will not pretend to know enough about each to be able to describe what each does or why it's included. But I was assured and had read online that BEP is the "gold standard" for testicular cancer patients. Of course, each has side effects which are no joke (some short, some long), and the BEP program is a very intense one. But the cure rates are extremely high - you hear different numbers but >90% was the one I heard or read most often.

a sample selection of my chemo cocktail

The only one of the three drugs that I'll comment further on is Bleomycin, because my urologist had mentioned how hard it is on your lungs. In fact, when Lance Armstrong underwent chemo, he only received one round of BEP and then switched to a different cocktail without the Bleomycin to try to preserve his lungs (and cycling career). But as I had no professional sports career to protect and wanted to maximize the chances of recovery and non-recurrence, I stuck with the gold standard.

BEP is unfortunately not one of the chemotherapy cocktails that can be taken via pill as far as I know, and is administered via intravenous infusion.

THE SCHEDULE

My oncology team had concluded that I should undergo 3 cycles of chemo, which seems to be the standard for testicular cancer patients with metastasis that hasn't gone too crazy.

3 cycles of 3 weeks each, sequential one after the other and no break in between (the break for your body is already built into the 3 weeks). Broken down in numbers, the total program was:

• 63 days

• 21 days at the hospital for infusions (+ more visits for testing)

• 39 infusions of chemotherapy (+ another 45 infusions for hydration and kidney protection)

• >90 hours in "the chair" receiving infusions

Each cycle looked like this:

Each cycle is exactly the same schedule (more or less), administered three times.

Day 1 infusions

Each week I also had a lung function test (same as described in the chemo prep post - basically blowing into a tube in a pressure controlled chamber) to ensure my lungs were not deteriorating significantly. I definitely didn't feel like my physical fitness or lung capacity was at it's best, but I suppose that's normal and the results were never so bad as to necessitate any change to my program. I would also have a blood test once a week. Normally these were just to ensure I was healthy enough to continue treatment, but at the end of every cycle they also checked my tumor marker levels to see how the cancer was responding to the chemo.

MY EXPERIENCE

To articulate my experience, I think it's helpful to segment by the three weeks of each cycle.

WEEK 1 - THE BIG ONE

As evident from the schedule above, week 1 of each cycle was by far and away the most intense in terms of time spent in the chair at the hospital and the heavy amount of cytoxic chemicals being dripped into your system.

The flow of Week 1 became pretty predictable. Monday through Friday, turn up at the hospital ~9:00 am to get hooked into the first two hydration / kidney protection infusions, which last until late morning. These hydration drips help the body process the chemotherapy infusions that come afterwards. I'd also received some pills - some to control allergic reactions - the others, not sure! Most mornings I actually felt OK and could be pretty productive for a few hours: signing on to work, doing some reading, or completing other admin. But, like clockwork, in the early afternoon after the first chemo drips started to take effect, I slowly became quite dozy, and Netflix or AppleTV took center stage. By 3:00 pm after completing the chemotherapy and one more hydration infusion, it was time to drive home (not me driving, that would have been very dangerous - SO thankful for my private chauffeur Jo). The rest of the afternoon I would drift further into a zombie-like state, completely devoid of energy or mental capacity and mostly thinking about when it would be reasonable to go to bed. I rarely made it past 8:00 pm. Then, wake up and do it all again.

The hospital experience for those long infusion sessions wasn't as bad as it sounds. I am lucky enough that my private insurance allowed me to be in a nice enough room with very comfy chairs and a decent view of the forest where I often run with our dog Noli. The nurses were amazing and so friendly, as were the small number of other patients even if almost none of them spoke English. That's expected though, as based on my experience in Germany, with the locals >60 y.o. English proficiency is uncommon (which is fine, I'm in their country after all).

Speaking of age, the age bracket of the other patients was both unsettling and also encouraging at the same time. I was ALWAYS the youngest person in the cancer ward, I never saw anyone within 10-15 years by my estimation. On the one hand, I could feel the looks on the other patient's faces - pity that I was a cancer patient at such a young age. At the same time, I guess I was glad that there wasn't a bunch of other young people in there going through the same thing.

my chemo chair for > 90 hours - actually so comfy

One of the most annoying things about Week 1 was how much I needed to pee. You are getting drip fed a ton of liquids, and those have to go somewhere. I'm sure I was peeing at least every half an hour, each time having to unplug my electric infusion pump and roll it over to the bathroom with me.

One tip I picked up from another testicular cancer survivor blog was to have a well-stocked hospital bag for Week 1 with all the comforts and gadgets needed for those long sessions - pillow, comfy clothes, chargers, laptop, tablet, book, headphones, snacks - almost like packing a carry-on for a flight. It's cheesy, but I also brought a framed photo from our wedding and put it on the windowsill for an extra mood boost.

By the time the weekend of Week 1 rolled around, although there were no infusions - the cumulative effect meant that I was pretty much a zombie the full weekend, confined mainly to bed or the couch.

WEEK 2 - THE WILD CARD

Week 2 for me was effectively a transition week - from Zombie back to human - but was the least predictable of the three weeks of the cycle.

The first few days of the week were normally pretty tough - arguably the hardest of the whole cycle actually. This was partially because of the lingering effects of the intense week prior combined with another dose of Bleomycin on the Monday. But actually in my case, the rough state I found myself in seemed to be mainly driven by the Lonquex injection I had to be given on Sunday evening of Week 1. Lonquex is a drug given to chemo patients to stimulate production of white blood cells, as those cell counts (and therefore ability to fight off infection) drop during treatment. Unfortunately, my body didn't love Lonquex, and for a few days I normally had the feeling of having an allergic reaction - my neck and face felt swollen, my chest tight, and I had some shortness of breath.

However, towards the middle of Week 2 the fog and feeling from the Lonquex would slowly start to lift, and by the weekend I felt much more myself, with capacity to work and exercise, which was great. That said, the rate of improvement during the course of the week was the most unpredictable of the program, which led to some frustration when I thought I should be feeling better than I did.

WEEK 3 - THE GENTLE ONE

If only every week of the program was Week 3! With a week's break from infusions / injections in the rearview mirror, my body would always bounce back quickly from the temporary zombie state induced by Monday's Bleomycin session. By Tuesday morning I already felt better and was able to work more or less normally, exercise, and had reasonably good energy and mental focus. It was an extremely welcome return to something closer to normality, especially knowing that at the end of Week 3 the next cycle would start, meaning repeating it all over again starting with the intensity of another Week 1.

FINAL THOUGHTS

It's hardly a revelation to suggest that chemotherapy is hard, both on the body (see post about side effects) and mind (see post about mental health), but of course it is. It's 63 days I wouldn't be in a hurry to go through again, but I think it's important to point out that it's not 63 days of consistent hell. Some very tough periods, but at least for me also some weeks of respite when treatment was more mild and I felt closer to myself. There were also many coping mechanisms which helped me manage the lows, which I'll share in another post.