Symptom Bingo and other unhelpful models and analogies

 We are still stuck in the same loop waiting for a diagnosis that the oncologists trust enough to recommend treatment. This week we met at Memorial Sloane Kettering and we will probably rely on them from now on, and they have all the available material at this point so will pontificate once their pathologists have done their stuff. Meanwhile I still feel fine – actually eerily better than fine thanks to a steroid medication that is hyping me up – and somehow the longer we manage to go without any new symptoms or catastrophe, the quieter the ticking clock sounds in the back of my head and the easier it becomes to remain patient. It has been a blessing to have my daughter with us for the last week too.

 

Ever the strategist, I can’t resist finding models and analogies for the various aspects of the situation we face. The most morbid one concerned the brain biopsies; my mental model for those was Russian Roulette. No matter how the neurosurgeon tried to reassure us, those two procedures felt like taking mortal risks, and preparing for the first one was undoubtedly the toughest part of the ordeal so far. But, having survived one pull of the trigger, being asked to repeat the exercise was not easy either and I really hope that there won’t be a request for a third.

 

Now I seem to have been inserted into an episode of House. There have been many best guesses of a diagnosis shared with us over the last month, all containing various words that do not auger well, but the second biopsy led the experts to retreat a bit and to doubt some earlier assumptions. There is some unusual material in the sample and that has piqued their interest. Unfortunately follow up tests (including a gender-supporting mammogram this week) have not provided a breakthrough so far, so we now have rival teams of Hugh Laurie’s searching for answers. Like in all the best House episodes, I, the patient, am perfectly lucid and free, with my family, to contribute unhelpfully to the process. So far I have not provided the drama of an episode every time the show needed a commercial break. But there is the House background of the ticking clock for added tension.

 

The next analogy that came to mind concerned our transfer for leading our care to Memorial Sloane Kettering in Manhattan. The Long Island University Hospital is full of talented people doing their veruy best for their patients, but it was clear that their resources were stretched to the limit in many fields, and the result for the patients could be witnessed in compromised bedding solutions and in hurried communications. MSK is obviously abundantly resourced, and thrrefore hs the luxury of being able to supply a top quality patient-centred experience. On our first visit, the senior neuro-oncologist leading the team for my case described himself as my quarterback, and that was exactly what I wanted to hear.

 

The analogy that came to mind was an experience in a crowded airport departure lounge awaiting boarding for a packed long-distance flight, but being approached by an airline staff member and offered an upgrade to club class. On the rare occasions this has happened to me, I can recall a glorious sense of warmth flooding my body. The introduction to MSK felt very similar to that. Of course I have to remember that the passengers in club class are travelling in the same rickety plane with the same flawed pilot to the same destination the same distance away. But the cosmetics certainly matter.

 

My final image is the most common one, and that is of symptom bingo. I know the rules of this game very well, having undergone perhaps a hundred tests of my optics, motion skills and cognitive awareness over the last month. Many practitioners have used very similar tests to check me out. Most of them have read in advance that I have a peripheral vision issue so they start there and often seem bewildered that I can see anything at all, let alone get their questions right much more often than not. A few resort to making it more difficult by hiding their hands almost behind their backs so that only a four-eyed monster could ever tell them how many fingers they had raised.

 

Because the tests all focus on the same areas I have a sort of agenda for my own future. I suppose this is reassuring in a way, despite any clues about timelines or severity of handicap. What it does offer is a template for self-assessment. I play this bingo game with myself all the time.

 

The problem is that it is a hard game to play accurately. Worst of all are the phantom symptoms, brought about by fear and anxiety. As soon as I start to think about the numbers on my bingo card, I imagine I feel them. One of my clues towards self-awareness is when this starts to happen less; it signifies that I am closer to being at peace with myself. It is no surprise: in the end is these symptoms that will drive the agenda and the rate of my decline. It would be strange to imagine nothing in this situation.

 

The next problem are true symptoms from external and short-term causes. Last Saturday I noticed a rather strong burning sensation in both my hands focused at the lower end of all my fingers. I was immediately worried because that symptom is most definitely on my bingo card. Worse, unlike the optical issue, it was something I could easily imagine getting worse quickly and leading to a lot of pain and incapacity.

 

What I failed to note amidst my mounting panic was that on Saturday I had a PET scan. A heavily radio-active chemical was injected into my body, and then I was asked to lie still for an extended period. Surely that is quite likely to lead to the bingo symptom? Sure enough, by Monday the symptom had almost vanished again, though actively noting the absence of something can also be something I forget to do.

 

Then there is the challenge of judging how the true symptoms are developing over time. I try to monitor my peripheral vision issue each day. Some days it seems much worse and other days it seems a little better. But then I realise that on the days when it seems worse there is usually an external cause such as a very dull day or a heavy glare or trying to read something with small print in bad light. My conclusion so far is that the symptom has neither become better nor worse for a full three-month period. That is rather reassuring.

 

This week my quarterback reminded me of an extra bingo rule that I often forget about. Because the tumour is on the right side, I should expect most symptoms to arise more strongly on the left side of my body, as indeed has been the case with my peripheral vision. So far all the burning and other symptoms have seemed equally prevalent on both sides, and that is comforting evidence that they really are phantoms of unrelated to the core illness. If you play a bingo game or any other game, it is smart to remember all the rules.

Not even MSK can afford to give me an MRI every week so my own bingo card monitoring is surely an important indicator of my health and of the behaviour of the tumour, and it is something I have to carry on with as rigorously as I can and report honestly to my doctors. But it is not easy to do that. The many external tests give me an agenda but the quality of their execution I often lacking. I know I cannot trust many of my own assessments, due to the phantom symptoms from anxiety and then the true but temporary symptoms caused by external factors. I have to move past this towards a bingo card that I can trust and report. I guess it is something to pass the time, and certainly more fun than Russian Roulette.