I am trying not to live for my paraprotein result. By live, I really mean, I am trying not to dwell on my paraprotein result. Bloody numbers.
I have spent months waiting for the result of that monthly test, where a few points up or down can have epic consequences. On the one hand it goes down and I got a Christmas with my family, on the other hand, it goes up and before you know, I am back watching my paraprotein level, sweating at the thought of it like I am finding out my A Level results all over again. The anxiety this causes cannot be good for me, maybe good for my bowel, but really, it isn’t good for anything else. The thing is, try as I might, I am always going to fixate on the result.
The Medically Trained People told me not to worry and think about it, but when my paraprotein level is the indicator they go by as to the success of my treatment, how could I not worry about it? Don’t worry about your paraprotein, but it does need to reduce by half for you to go to transplant. Okay, sure thing, now just excuse me, whilst I remove this elephant from the room.
In this area, I want to be a medical marvel. I don’t want to be known as the young lady who got myeloma, I want to be known as the young lady who got myeloma and responded astoundingly well to her drugs and was cured. Alas, that is not a test I can study for. If only I could. My body does what it wants regardless of what the best thing for me is and intellect has no weighting here.
I’ve been pretending I am indifferent to the results, mostly because failure scares me. I failed once before and now, I just see the stubborn figure as a big fat major. Every time I think about my paraprotein level, I think about failure, my mind goes into a spiral with thoughts that do not need to be repeated here. Bad thoughts.
The issue I also have, is that I don’t know what is a good or bad result. I have already been through this once before, so I know that any improvement (see what I did there, positivity)is going to be slight. As much as I would love to fall asleep, have my blood taken and then three days later find out that I have had a reduction of 15, I know it is not going to happen. My paraprotein level takes things slowly, like my erm… metabolism. So, I have to take any improvement as a good sign, as hard as it is for me to get excited about a point here or there. I don’t get excited about it anymore, because even if it goes down, it is still there. I get my exam anxiety pre-results because there is always going to be a part of me that wants to be the medical marvel. I cannot stop myself thinking that, thus anything that is not that, is a big fat letdown, even if it is a move in the right direction.
So, with that in mind, last Friday I found out that my paraprotein level had reduced by a measly three during my first cycle to 23. I am not excited about it.
EJB x
E.J. Bones 
Since the beginning of my daughters diagnoses we have not focused on numbers. It was overwhelming. It may be naive but she leaves it up to the docs to tell her good, little low, needs improvement. Sometimes I think she should keep closer track but then we would become fixated on every little change. It’s different for her though because she has been through transplant. When hers was postponed for 2 months we were so anxious. We just wanted to get it over with & start on the journey of renewal. Emma Jane, you are so young like my daughter. I keep you in my prayers each night with my daughter.