Seeking the New Normal

Sitting in Dr. Sur's office today ( the radiation oncologist who first took me on at the Juravinski Cancer Clinic way way back...has it really only been 6 months, sometimes it feels like 6 years...) he does a check on my appetite, asks how I am eating, growls a bit about my weight - only up a pound. I point out it is up a pound not down - and then tells me that the key now is to have regular scans, regular scopes, every three months just to make sure there is no re-occurrence of the cancer. The odds are, the reality is, that at the moment I don't have cancer in me. I am reluctant to say I am cured, I notice very few people who have done cancer ever use the phrase cured, but I am for now dealing with something truly unexpected, getting to a new normal.

A few weeks back, Debi and I went to Toronto, spent the night at the Royal York Hotel, ate a very nice meal in the Library Bar and had, for the first time in months, a normal night out. Two weeks ago, we drove to Pittsburgh ( I have always wanted to visit Pittsburgh and we can talk about that later). A road trip with a detour through an amazing state park, a night in a fabulous inn with a great meal, a couple of sunny hot days in Iron City drinking local grappa, sampling city made gin and eating truly interesting food.

The key difference between these recent experiences and what I did immediately before being diagnosed are actually pretty remarkable. Just prior to the diagnosis, I could barely eat and had no appetite. We could still travel but it just wasn't all that enjoyable for me and I suspect my discomfort made it truly unpleasant for Debi. Now my appetite is back. I can eat just about anything. I can only eat about a third of what I used to eat and my love of beer has been shelved. But I can eat and there is nothing wrong with a white wine or a good grappa. A couple of nights ago I had a bowl of potato garlic soup which was incredible. I loved the flavours, the texture, the taste. The fact that it was a small bowl was of little consequence. The wine I had with the soup was crisp, tart, cold and a bit too expensive but I am not complaining.

All my doctors tell me that the next couple of years are key. This is the time of watchfulness. The first 24-36 months after my type of surgery is the time when a re-occurrence is most likely. My surgeon says, I tell people, spend the first few years doing the things you most like doing. It is a plan.

So the new normal? Figuring out what a decent sized meal really is. Finding wines I really like. Reading books that matter and appeal to me. Talking with and spending time with people I truly enjoy. Writing what matters to me. Travelling with Debi wherever we can and whenever we can. Being with and content in the moment. This is all the new normal.

One Week Done...

In about 12 hours I start my second week of chemo/radiation therapy.

Week one went well, all things considered. All things considered of course include the pumping of powerful chemicals into my body, getting bombarded by radiation every day and spending two hours a day driving to and from the Juravinski Cancer Centre in Hamilton. It is not quite as wearing as it sounds, for me, but it is much much more boring than it sounds. The actual process of chemo infusion and radiation bombardment lacks real observable impact. You lay there, you sit there. Things are done to you but you are at the moment of it happening largely physically unaware that it is happening. Mentally, you are very aware.

People say to me, you look good. I think they are afraid that they will find me wasting away, gaunt, sickly looking and, for most part, none of that is the case. A couple of weeks ago I said to a friend, who had remarked that I looked good, you know if it wasn't for the swallowing thing, I wouldn't know I was sick. That's not quite true but the swallowing thing is the key indicator.

What I mean by swallowing is that it is very hard. At the moment, it is better than it was thanks to the three brachytherapy treatments I had before starting the real treatment. Before that, for a time, I could barely swallow and every bite threatened to make me gag. Now, the threat remains but I gag less and less and can get some food down. My oncologists, my nutritionist, tell me that it could get worse, swallowing could become an increasing problem as the esophagus become irritated by the treatment.

It is more than just swallowing. Eating is a true chore and the taste of food no longer brings any pleasure. The combination of those two things means eating is something I would seriously rather not do. My doctors see this as a real problem. My weight can not change during the chemo-radiation. Everything is calculated on weight and body dimensions. For my weight to change is to throw everything into a tizzy. I have never been lectured as much about anything as I have been lectured in the last two weeks about my weight staying the same. The oncology team also stress that food is a problem for all cancer patients because the cancer tumours emit chemicals into the blood system that decrease appetite.

On Thursday, we met with the nutritionist on the team taking care of me. She believes and insists that I need to eat an insane amount of food, with an equally insane proportion of protein to stay right for the chemo-radiation and to be ready for surgery in the winter. It almost makes me nauseous to contemplate the food she wants and needs me to eat.

Finding things to eat is a challenge. Fish is great, beef not so much. Eggs work. Smoothies laced with whey powder are filling and really help with the protein quota. The staple of the aged, Ensure, I can handle. Coffee is no longer a true pleasure. Beer lacks taste. My subconscious seems to crave Cheetos and my conscious mind thinks my subconscious is an idiot. I have to eat standing up, I am embarrassed to eat in public. I never know in advance what will cause me to choke, gag, throw up. Being told that at the moment my eating is pretty good but it might worsen down the road frankly scares me. Friends knowing what we are going through have been overwhelmingly generous bringing soups, puddings, juices...even a couple of low cost cases of Ensure. It has blown me and Debi away and has seriously eased the burden she is carrying in trying to make sure I can and do eat.

When you are sick, when you are ill, you learn truly interesting things about yourself. You learn about limits, you wrestle with inadequacies and with personal disappointments. I have done this in the past and often surprised myself. This wrestling with food is making me confront issues of desire, satiety, need, want and choice. This is new and this is perplexing.

What isn't new is my understanding that some things just need to be done and sometimes you just need to do the things that need to be done.

Debi tells me I have one job. I have to beat this thing. It is the work I have taken on. And I will do my job. I just never realized doing my one job would mean finding a way to eat as if I mean it.