Good days and bad days …

A good day back in Miami

So it turns out that chemo is all about good days vs. bad ones. For those of you who don't know I was diagnosed with colorectal cancer in March and after surgery and recovery I'm reluctantly partaking in chemo treatments as a "preventative" strategy to decrease the chances of the cancer returning. Although all indications are that the cancer has not spread, this is a particularly malignant cancer and if it returns it's all but lights out.

As a capoeirista of twenty years I was particularly interested (concerned) about how chemotherapy and having a port surgically implanted would affect my ability to do what I most love. As I couldn't find adequate information from my doctors or online I am using my experience and this blog to maybe offer an insight to others who find themselves in this situation. I'm receiving treatment at the Mayo Clinic in Rochester, MN where my sister Catharine has been so kind as to invite me into her ever expanding family. This week, however I'm back home in Miami and will have a moment to reflect on my experience.

My chemo comes in two week cycles. Currently I have received two treatments. It begins Thursday with two hours in the hospital receiving Oxaliplatin, a platinum-based (yes the rare heavy metal) chemical that has cummulative side effects that begin with cold sensitivity and can eventually lead to permanent nerve damage. I will discontinue this one if I begin to experience the more severe effects. So far the cold sensitivity is uncomfortable at most and results in having to drink warm water to hydrate. After the Oxaliplatin I get a quick dose of Fluorouracil, affectionately known as 5FU (no I couldn't make that up). This Flouride based chemical attacks my cells as they divide so quick replacing cells such as those in the gastrointestinal system suffer most. More on that later.

The key to making 5FU effective is to attack the cancer cells when they replicate. Because timing is everything, they are kind enough to attach a mobile pump through my port and I get to continue receiving 5FU for 46 hours after I leave the hospital. I should mention that prior to beginning the infusions they give me oral meds to help push back the nausea. These meds wear off about the time the pump delivers the last of its precious cargo. That's when the bad days begin.

On Saturday I remove the pump after injecting myself with saline and heparin, a blood thinner. Quite proud that I can do that all myself. I'll have to video it next time. The nausea begins a day earlier but the special time I call "riding the vomit comet" usually begins on day three. This is when I spend three days in my sister's basement sleeping for an hour or two and then vomiting. Rinse and repeat. It seems when this is happening that it will never end. Only tea gives me comfort as throwing up tea is much preferred to stomach acid alone. For the second cycle the Oncologist team recommended an additional nausea medication and an increase in the initial oral meds. It did lead to less vomiting overall but not to a decrease in the most important indicator, the number of bad days.

So on day 5, also known as day three on the vomit calendar I begin to have brief but important cravings for food. Usually it involves bacon and it's important to act on it immediately as overwhelming nausea can ruin such visions of grandeur. I learned a valuable lesson the first time this happened. One must not prepare ones own food. Although I like being independent, I've had to allow others to make my food. The chemo causes me to have extra-sensory olfactory abilities which make even tap water smell horrible. By the time I prepare my own food I am sick from the smell of well just about everything and quickly return to my dungeon sanctuary unable to eat it.

Day six, although not a good day is when I can begin to eat. It's important to get calories so I don't lose too much weight. After not eating for 3-4 days it becomes a race to put on weight before the next cycle begins. Unfortunately my mouth is one of those areas where cells are destroyed. Some foods now taste like chalk and even my Dunkin Donut tasted like licking sugar out of an ashtray or so I imagine. But eating is important and with food comes energy and a return to normal activity. By normal activity I of course mean normal for a capoeira.

Which leads to my central concern. How about capoeira and how about staying in shape. How good are the good days? Let me just say that though I have been able to workout, I must admit a level of disappointment. It seems that fatigue is nausea's younger brother. A walk may leave me exhausted. A two mile run left me itching all over and with uncharacteristicly sore muscles. And yet each day it improves. Also It's been difficult being in Rochester and not having a capoeira community close by. Capoeira is my closest confidante and my psychologist of first resort. This week in Miami I am looking forward to training and playing as much as my body is able. My goal after all is not to just live, but to do it kicking ass.

So what's the final tally? I'll say 5 good days, 2 so-so days and 7 progressively getting better days until it all begins again. To put things in perspective, if you are not vomiting then you should consider it a good day. Here's hoping you make it a great one.

This is Professor Alemão Superação signing off. Até a próxima roda …

#capoeirastrong #superacao #micobymyside