45, 36, 26, 29, 24, 23, 21, 20, 19, 18, 26, 21, 21, 20, 19, 8, 7, 5…
Since the 15 August 2012, when a junior Medically Trained Person told me I had an inaudible rare sort of paraprotein in blood, I have been plagued by it’s volume. For the first 12 months, it ruled my life and the monthly test result would determine my mood and resolve for the rest of the month. I lived and breathed that paraprotein level because so much of my life depended on it.
“We must get a partial response of 50% reduction.”
“It has to be below 20.”
“A complete response is 0, and it is unlikely you will get that on PADIMAC.”
“We think it has plateaued.”
“It’s 18, you can go to transplant.”
“I am afraid your paraprotein has increased and you will not be having your transplant. You will have another four months of treatment and then we will see”
“You are unlikely to have a level below 10 after your transplant.”
And so it went… I monitored it and everybody monitored it with me, using a plethora of emojis when it was good news and kisses when it was bad.
To preserve my stoicism, after so many dashed hopes, at some point last year, I told myself that I did not care what it was because I was tired of feeling like I was getting my A Level results every month. In the autumn, for the first time, my paraprotein level reached single figures and then I realised that I did care. The ability to live my life revolves around a figure I have no control over Once upon an infancy, I thought that reaching single figures would be easy, a piece of piss if you will, but for me, it quickly became evident that it would not be a piece of piss. It became out of my reach and the thought of not having a paraprotein level was not even a dream. It was a disappointment.
In recent months, I avoided asking what my paraprotein level was because I did not want to know that the life myeloma has carved out for me was over before I could take off the training wheels. I chose ignorance. Ignorance however, in case you wanted to try it, does come with an unhealthy amount of paranoia and self doubt; and that is how I have lived.
I had a doctor’s appointment recently. It was one of those situations where I had worked myself into silent hysterics prior, mostly because I was informed three days before it that I had to come in for an appointment and then as I waited, I saw The Senior Medically Trained Person and my palms started to sweat. At that moment, all I could think about was my paraprotein level. It had increased to be sure and I would be back to the drawing board.
That is not what happened.
In a matter of fact way, I was told that my current treatment was working because my bloods looked “very good”. Very good, I thought, I must be maintaining my status quo, and I satisfied with that despite struggling through my velcade injections every fortnight. Velcade and all it entails is the payoff. That said, a general comment was not sufficient for me, and seeing as I had made the effort to be half an hour late for my appointment, I used the opportunity to ask what my paraprotein level was and what do you know? I did not have one.
It did not and does not feel how I imagined it would. There are no fireworks in my head. Everyday continues to be an indescribable struggle full of sacrifices and walls, which yesterday’s day in bed would attest to. The overriding feeling I have and this latest development is relief, I feel like it buys me more time. More time to get used to the life myeloma has carved out for me.
Naturally, the Support Network were more enthusiastic about it than I. Emojis and kisses. They do not see that it changes nothing in terms of my daily routine, treatment and ability to see them. My favourite celebration was a fist bump accompanied by the acknowledgement that everyday will still be difficult.
That said, I did let myself smile. A few times.