I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.
My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.
At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.
Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.
I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.
I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?
There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.
At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.
The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.