It’s time to do this….. a story about my very own transplant.
I decided to call him “blog“!
Thought it sort of suited the amorphous nature of the thing. It’s not after all an easily recognised body bit. Everyone “gets” the transplanted organ. Even if you haven’t seen one, as I have many times, you can conjure kidney, liver, heart or lung. Stem cells though? They’re just not quite in our consciousness in the same way.
So, blog it is.
The need for blog stems (and yes, pun intended – no point making this a dry, boring, “doctor does his own demise” story after all) from a failure – a failure of the body, my body, to control itself. Curiously, like all cancers, some cells have lost the plot, and decided to behave aberrantly. T-cells have migrated from their usual sites to congregate in my skin, build abnormal clones in my blood, and for good measure, deposit themselves in my lymph nodes.
To this point my internal organs have been spared the burden of unwanted visitors. My cancer therefore has been staged as “advanced” and given a name. I have a form of cutaneous T-cell lymphoma (CTCL). Like so many cancers, within the generic group of CTCLs, there are those that behave in different ways, and some are more aggressive (I’ll go “rapidly lethal” here). Sézary Syndrome, the most aggressive, is where I am at. International experience would suggest that only half of all patients are alive 4 years from the time of diagnosis when at this stage.
Sézary however is rare. Very rare. Few of my colleagues had even heard of it. I certainly hadn’t. There are less than a handful of cases diagnosed each year in Australia.
Now “rare” can be OK if it comes with “obvious”. A large lump, even internally, can be seen or felt, duly biopsied, a diagnosis ultimately arrived at, and treatment commenced.
Sézary however can be, and in my case, was, just another rash. For four years, as my skin became more significantly affected, I repeatedly sought advice from specialist colleagues – and not just one, on what to do with this thing that was making my life miserable. The thing – labelled eczema, had progressed from a small patch on my right shin, to a flaking (the f-word!), itching conflagration, covering my entire body. I walked around in a cloud of dander. I could no longer work as an anaesthetist – the required, frequent handwashing left my palms raw, and at times, bleeding. I became intolerant of cold. The operating room was Siberia. I had begun wearing thermals to work. I was photosensitive – something doubly frustrating as we had just moved to a home on the beach. Even a short walk was a call for slip, slop and slap, lest I should become burned in only minutes.
Behind the obvious signs and symptoms of a skin disorder though was something far more debilitating. I was becoming progressively more fatigued. Put down initially to the after effects of a severe flu, it meant that I was forced, incrementally, to cut back on all activities. Regardless of how much I cut back, the sense of exhaustion remained.
Now, while hardly fanatical about exercise, I had always done something to keep fit. A return to the gym seemed in order. Perhaps it was after all just a lack of deliberate, regular exercise that was contributing?
I soon learned that it wasn’t.
By way of introduction to a new gym, I was offered limited personal training sessions. So, on day one, I was being assessed. Flexibility – tick. Floor work – tick. On to the rowing machine, an old favourite. Felt good to be back. But crikey, it didn’t last long. I was pleased to stop and move on to the step machine. Pleased that is, until I realised that if I didn’t stop stepping I would come to some form of grief. There was an overwhelming sense of impending collapse.
I was soon prostrate on the floor, at my side a medical colleague who happened to be at the gym and had seen what was going on. A quick assessment and slow return to steady feet proved that there was nothing sinister happening. As did a formal medical review and cardiac work up.
I had a rash.