Week Three Goes Nowhere Near According To Plan

One thing I have learned in my lifetime of exposure to medicine is that the old cliche about it being more art than science isn't quite right. There is loads of science, constantly shifting and evolving science, and there is also lots of art rooted in experience, judgement and a mix of expectation on the part of the doctors and the patients. And these two elements are all wrapped up in the unknowable, how the individual in question, both the conscious being with a name and an identity and that being's body, are going to react to any given experience, any given treatment. 

There are always hitches in a plan...Robbie Burns knew that ('the best laid schemes of mice and men'), philosophers and theologians know that ('from your mouth to God's ear'.., 'Man plans, God laughs,') But I am a relatively optimistic individual and I fully expected that the plan for tackling my cancer would stay on course at least for the first half, but not so.

When the options were laid out during the oncology consult, the doctors were concerned that the option that involved months of chemo might not be compatible with my immune system. Well given that my immune system, or the white blood cell component of my immune system, doesn't seemed to have coped well with two weeks of chemo-radiation, I can at least conclude that they were right about that. 

Measuring things is complicated. On Monday, after having blood work down, one of the pharmacists, explained that one of my counts was at .9 and that they were really uncomfortable proceeding with chemo when a white blood count was lower than 1.5. So no chemo for me this week. I have to admit I immediately conjured up the image of the Soup Nazi in Seinfeld telling Elaine, 'No soup for you'. It was a blow, I am in the chemo waiting room surrounded by all kinds of people waiting to get on with being treated and listening to a very kind pharmacist explain that we just can't go ahead this week gets me down. 

See, I have been doing relatively well with the chemo. Other than fatigue, none of the expected side effects have been occurring. I just imagined everything was going according to schedule. What I now know is that wiping out the immune system is one of those intended-unintended consequences of chemotherapy and when you combine chemo and radiation the possibilities are increased.

What most bummed me out about my conversation with the pharmacist was her response to my question: "so what do I do to boost my white blood count?" She looked at me and replied, there is nothing I could do. ( There are things that can be done apparently but those things are out of my control.) I hate these types of things being out of my control. ( I know, I know...worry about the things that are in your control....yada yada yada)

So this week, no chemo but the radiation marches on. Also this week, consultations with my oncologists about how we get past this roadblock. As I said, I am an optimist. I do believe that, and I have good reason to believe that this is simply a curve in the road, a google maps snafu if you will.

The science is still there, the art and the best judgments that make up the focus of medicine are clearly a bit more of a fudge this week.  

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.