Mid-term Review

Yesterday we went to the Cross Cancer Institute to meet with Dr. Jha for what I am calling a mid-term review… basically to let the gentleman have a look at how I’m doing and to make suggestions (pronouncements) about what comes next.

The visit with Dr. Jha was a bit anti-climatic. Sure, he poked and prodded, and looked in my mouth, stuck a scope up my nose and down my throat… but he really didn’t say much other than it all looks good. He quizzed me a bit about functionality of tongue and swallow, weight gain (or lack thereof) but it just felt ‘blah’… he seemed really blaise about my early morning vomiting, which we’ve attributed to phlegm build up on the soft palate owing to allergies, and didn’t offer any strategy for dealing with it. Delores, his triage nurse was more helpful. At the end of the meeting, he told me that he was handing me off to the surgeon, Dr. Williams, ’cause there wasn’t much point in two specialists keeping me on their roster, and he did see/consult with Dr. Williams on a daily basis.

Okay… I’m a bit puzzled. I know that I’m in good shape, relatively, but I still expected a bit more from him…

The other person we saw was Cathy Kubrak, a research nurse who is working on a study of head and neck cancer patients and their QOL (quality of life) when it comes to saliva production and food ingestion. A really nice person, and she seems genuinely interested in the outcomes…

What she is discovering is that the weight loss curve seems to be consistent to most of the patients she is surveying… so I take heart that this isn’t just my issue. They don’t yet have a solution to the problem, but they are talking about a number of strategies, including ‘tubing’ all head and neck cancer patients. I took issue with this approach (and discovered that she is NOT onside with it, either). For me, putting in the abdominal tube would have been tantamount to declaring failure, and my emotional state would have suffered dramatically. My cancer is not the same as MS or one of the other diseases where the introduction of the J-tube gives the patient a sense of hope. For me, it would have meant that the recovery was not going well… that I was in serious trouble. Hope would flee…

I told Cathy that our GP, Dr. Naiker, has prescribed an appetite stimulant (gotta remember to fill that prescription one of these days). I got the impression that that was one of Cathy’s preferred approaches.

The problem with an appetite stimulant is that I still haven’t found an intake regime that makes sense… the celiac issues complicate things dramatically. I’m not able to just load up on noodle soups… I do need to find something that works, that is easy, otherwise I’ll just continue to do ‘maintenance’ feeding and not begin the ‘bulking up’ that I really need.

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