Today, I have had my final dose of Velcade. This means I have had my last dose of treatment on the PADIMAC trial. It would be unfair of me to say that PADIMAC has failed me, for I have had a partial response, however I did not want a partial response. I wanted my paraprotein to go down to 0. I wanted to be able to harvest my eggs and my healthy stem cell. I want to be going back to work now. I want to have hair. Eighteen weeks and two days ago, I thought that the above would happen. Well, most of it. After my first cycle, I was sure of it. I thought that at the start of 2013, I would be better and that by now, I would be getting ready to return to work, just potentially with slightly shorter hair. I still have hair and the hair I lost is starting to grow back. It need not have bothered for I’ll be shaving it off in a month. At the time I thought my chance of having my own babies was nonexistent, which is good because I prepared myself for the worst. As it turns out, at this moment, I can still have babies; it is unlikely that I will be able to have my own babies in two months time. Thank goodness I prepared myself for the worst.
Over the last eighteen weeks, I have had six cycles of treatment involving 66 pricks of a needle, a facial hair load of steroids, chemotherapy, received a stomach full of scars and produced two buckets full of my pee as well as seven egg cups worth. In this time, I have learnt how my body will feel within in each three week cycle. Every side effect I know and I can manage them, even the horrible ones. I know when I cannot get out of bed and I know when I can. I know when I will not be able to toilet and more often than not, I know when I can. I know when I will not want to eat nor drink and I know when I will. I know when I need to speak to the Medically Trained People and I know when I don’t. Knowing all these things means I know when something is wrong, because my experience tells me so. I do not know what my future holds.
I have a rough outline of what is to come and I have a rather horrible decision to make before that. Regardless of my decision, I know that the treatment to come is going to make me feel more ill than I have ever felt before. I face at least three months of a low immune system, and during that time, until my blood count returns to normal, every sneeze, headache or frustrating stool is going to come with a waterfall of paranoia. Any immunity I have built up over my 28 years will be lost; my body will start afresh. Hopefully.
As for my future treatment and the transplant, I am terrified. I am so scared about the side effects, the chest line, transfusions, missing my flat and death. I don’t want any of it, but I know that all of it bar the latter, is necessary. It will happen. It is happening. I want to get better. Correction, I need to get better. To curb my mawkish thoughts, I have to remember one thing. I have to remember that I got this far. I got through my diagnosis and I now understand what is happening to me. I got through my eighteen weeks of treatment and everything that entailed. I have got this far with my head held high and with my personality still intact, albeit, clinging on for dear life. I did it.
And by hook or by crook, I will get through this next stage, as scary as it seems now. I have to. Every part of my treatment is a means to an end. I have said that from the start and I will have to continue to say it regularly because it is true, and because I now suffer from short term memory loss.
For now, I am going to enjoy my four weeks off of treatment. I am going to build up a bank of positivity because I know I will need it.
A means to an end.
EJB x
