My Father Dreams in Creole: Part TWO

December 2020 was filled with scans and conversations. Hard conversations. We found out the cancer was stage 3 but learned what that meant for him specifically. For those who may not know, “the cancer's stage tells you where a cancer is located and its size, how far it has grown into nearby tissues, and if it has spread to nearby lymph nodes or other parts of the body.” (https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/stages-cancer) Stage 3 was scary but after staring at some digital blobs on a screen we learned that treatment was overclocked due to some minor uncertainty about whether his lymph nodes were affected. We also learned that nasopharynx cancer cells were more sensitive to treatment. Things appeared to be slightly less dire. Only slightly.

We waited until after Christmas weekend to tell more people and broke the news to immediate family over Zoom since we all lived in different states and outside of the US. Oh yeah and there was a pandemic. Breaking bad news via webcam did not make it any less emotional. After about an hour of out-of-sync crying with frozen pixel people we made jokes to cheer each other up. We spent 5+ hours on the virtual call to make up for consoling hugs and human contact. I decided not to share the news too widely because after years of concealing some of the deepest parts of me, this was just another secret sadness. I think my dad can tend to hide his suffering as well.

You could say we treated this like spies on a mission to assassinate nasopharyngeal cancer.

At 67 years young, my dad was in good health for his age. He had high blood pressure and bladder tumors in the past but there wasn’t much concern about his overall health. The question his oncologists would ask over and over was “how far can you walk without getting tired?” Ten blocks was apparently an impressive feat for his age which seemed to make the doctors confident about him tolerating aggressive treatment.

New Year’s came and went as we prepared ourselves. The plan was three cycles of chemo then seven weeks of radiation combined with three more cycles of chemo. We were both anxious to get him plugged up to an IV. The sooner we get started the sooner we’re done with cancer, right?

Well, no one warns you about all the waiting.

There was the waiting during chemo and waiting for the next dose. Then there's all the waiting you do at home in between doses. You could sleep, eat, even work if you’re employed or physically able, but it’s all still waiting. On the first day of the first cycle, he had two hours of IV hydration, then two hours of chemo, then another two hours of hydration (this is all to protect the kidneys from the chemo drug). A week later he got more hydration, then a smaller dose of chemo, and more hydration. A full cycle is three weeks long and this first treatment lasted three months. This was the minimum for cancer in general and other types of cancer call for more cycles and more waiting. Color us lucky, I guess.

Day in and day out you’re just waiting to see how the chemicals affect you while resting before they pump more in. There’s also waiting for nausea to either start or end. It was intense nausea that would come and go which was surprising because he felt fine most of the time. Fatigue was expected since chemo is like pouring gasoline on a charcoal grill to cook a single hot dog. Your body gets wrecked and your cells attempt damage control

EVERY SINGLE TIME.

After three cycles of chemo there was a slight break where he realized it wasn't as bad as he thought. Treatment anxiety started to wane but then that turned into paranoia. Is the treatment even working if I can’t feel it? Starting radiation didn't seem too bad at first either. The treatments are cumulative meaning you don't start to feel the full brunt of the side effects until the fourth week or so. Chemo was more immediate in that the effects usually occur about three days after a dose is administered, as per his oncologist. It was easier to expect and manage that. With radiation there was almost this sort of veil over reality where we could very well think, “oh this is not that bad,” because the worst of it was on a delay.

Getting to the treatments was another time-consuming part of the process. We decided on continuing treatment at the VA but this also meant that we had to travel to Brooklyn since radiology was not available at the Manhattan location. The annoying part is radiation is done five times a week. Most days I went with him until he started to get use to the routine. We were given free travel through an ambulette service which eased some of the stress of commuting between boroughs. For seven weeks, it was up to an hour from East Harlem to Fort Hamilton and then another hour back.

The actual radiation only lasts about 15-20 mins so on a good day, with no traffic, we’d be gone from 8 AM to 11 AM. There weren’t many good days. When he needed hydration, which was most of the time towards the end, or during radiation+chemo days, we were out from 8 AM-6 PM, sometimes getting caught in bumper-to-bumper traffic. More waiting. I’d pack snacks and lunches, tons of water, all kinds of hard candies, and a phone charger. Being sick is a full-time job, y’all.

The radiation side effects were, thankfully, minimal and manageable for most of his treatment. Don’t get me wrong, it was still bad just not as bad as it could’ve been. Both treatments caused dry mouth and he needed to drink at least a gallon of water to keep his kidneys healthy. Eventually, he started to experience some swallowing issues, skin burns both outside and inside, and body aches. He lost his sense of taste and desire to eat. He lost 20 lbs. even thought the weight of it all was more apparent. His eyes were heavy, cheeks sunken in, and his shoulders slumped. One day he shaved his mustache and beard, but the hair struggled to grow back. Despite all this, he would get up, get dressed, sit in the ambulette, sit in the waiting room, sit in the chemo chair, then back in the ambulette, for the full seven weeks. He walked to and from treatment on his own two feet until one day, a week after we celebrated his final treatments, he walked in for hydration and was admitted.

Thanks for reading. The next part will be a difficult one to write. Apologies in advanced if it’s late. -BYJM