I feel like my treatment can change daily. I also feel like nothing really changes at all.
This is my world.
In the last four weeks, there has been much progression with my treatment. Or at least, some clarity about where I will be heading when I come to the end of VDT/VTD at the end of this month. Until recently, I have not given a thought to what will happen after, because My Plan, did not involve being on VDT/VTD in the first place. It’s all very exciting. Daunting. And scary.
These would have made really interesting blogs individually, but that did not happen, so, here is a round up… I am still trying to get my head around it all.
Friday 17 May
Results Day. The day when I pretend that it is just a normal day and that I do not care about which way my paraprotein has travelled in the month prior. Except I do care, so there is the snag. This time around, I had also built up the relevance of my paraprotein because at my last clinic appointment, a Medically Trained Person had said that the result was ‘important’, but did not explain why. In his defence, he might have done, but I might not have been concentrating because. Was thinking about something else. Probably the pee I was about to do. That pregnancy test always gets me on the edge of my seat. It isn’t just me who sees the importance of my paraprotein level, those in my support network do, and last Thursday, every question I got about it, just made me more anxious about the result to the point where I did not want it.
The thing about my paraprotein, is that I fail the test every time. I do not know whether it is actually possible to fail a paraprotein test, but in my mind I fail it. I want my paraprotein to be zero, but realistically that is not going to happen anytime soon, so I want it to be below twenty. The problem is, I have absolutely no control over what it is. I cannot make it go below twenty or fall lower than it is going and I cannot see this as anything other than a big fat failure. Every time I get hat area protein result, even f it is a reduction, which it was last Friday, I view it as a failure. I cannot just work a little bit harder for this test, and cram the night before, it has a mind of its own, but people ask me about it like I can control it and I know what the results mean. Even after 8 months of this shit, I still do not know what it means.
I do know however that my paraprotein level is stubborn. It likes to hover around twenty. As I discovered on PADIMAC, it can also plateaux. Correction, it does plateaux. At the end of my first cycle of VDT/VTD, it had reduced to 23 and in the back of my mind, I thought, I had been here before and I knew that I would not be witnessing a paraprotein miracle. I would not be witnessing single figures. Last Friday, I knew for sure when I got my result and it had reduced by two. The key thing here, about from plateau of course, is that I had a reduction, and I myself that any reduction is a good thing. It is not the best thing, but it is better than being slapped in the face with a trout.
However, I did not need to convince myself that something good had happened, because something ultimately more exciting got my brain doing Zumba. A Medically Trained Person said, once I had my result, that they just needed to get my transplant in me. Now, for two and a half months, I had not allowed myself to think about a transplant. It was off the menu for me. Any thought of a transplant had to be bad, because of the complete devastation when I found out I was not having one in March. But there it was, the words had been spoken, and for the first time in a long time, I started to hope again that the end was coming. That I was getting close to the end of this chapter. I know I did, because for that weekend, it monopolised my thoughts and conversation.
Wednesday 22 May
Still thinking about what may have been a throw away comment on the Friday, I received a phone call. I was on the 38 bus. I have to answer my phone all the time now, because I am dedicated to my work, so it was a pleasant surprise to find that the call was not work related and was in fact from a Medically Trained Person.
I was informed that at the weekly Medically Trained in Myeloma Convention, I was discussed. It’s not because I am special, which I am, it’s because I am told, they discuss all the unfortunates. So, I was discussed and it was decided that because my level was plateauing, I was not going to have have my fourth cycle of VDT/VTD, no, instead, I was going to go straight to transplant because they did not think my level would reduce significantly with one more cycle.
I hung up and my brain went like this:
It was not the circumstance in which I would like to have my transplant. The plateau. There is failure there and that was all I could think of. More failure. More potential failure. Though, I let myself think about this for a teeny, teeny bit and then, I made myself think forward. After all, the mental preparation for a SCT, at least for me, is significant and I had locked all that stuff away, that digging it all back up again was an exercise in itself. Dig I did. I rang people, and spoke to more, made plans based on me not being in treatment and dare I say it, I got excited. Full blown excited. That evening, my head was simply saying “it’s coming to an end, it’s coming to an end, it’s coming to end an.” It is coming to an end.
And then for first time in a long time, I was actually able to look beyond July.
Thursday 23 May
I was minding my own business, doing a spot of shopping in Sainsbury’s, which in itself is a rare occurrence because of the carrying involved, when I received another phone call. This one, again from a Medically Trained Person, took back everything that I was told the previous day.
Apparently, the most senior of Medically Trained People thought that as my paraprotein was still going down, despite its meagre pace, I should remain on VDT/VTD for the last cycle and then have my transplant. In reality, this was just a four week delay, however, I had spent 36 hours preparing myself for something that had once again been postponed. Yoda, wisely of course, told me mid whine that I was in exactly the same position that I was in the previous morning. I did not see it that way. I was being messed around again. There is nobody to blame for this, I am not that petty, well, I blame My Myeloma. Maybe, if I was to offer some constructive criticism to the people who look after me, it would be to check such proposed changes with key personnel before informing me, for a four week change may not be a big deal for them, but it is to me. This is my life. It is my working week and my Sunday rest and every change is a deal on the group text message proportions.
That said, in order for me to continue with the stuff that is living, I found myself in the position, yet again, where I had to convince myself that the course I was on, was the best thing for me. I would make a terrible salesperson, as in a terrible salesperson, however, I believe that since I was diagnosed with myeloma, my ability to sell things to myself, has improved greatly.
Thursday 6 June
It was clinic appointment time. My least favourite half an hour of the month. Mamma Jones accompanied me to this one, I had asked her to attend this appointment on the 22 May. FYI.
In this appointment, I received confirmation of what I had been able to piece together in the two weeks before it. The plan is ‘simple’. I will be having a transplant. Not a hypothetical transplant, an actual, real life SCT in 6-7 weeks time. How so soon I hear you think? Well, I will tell you. I have already been harvested, so, bar a biopsy and a few tests on my heart, I am good to go. Good to go once I have finished my fourth cycle of treatment. Good to go regardless of my paraprotein result.
Or so I am told…
This news, by the way, warranted another group text message.
I realised today that I forgot to get my paraprotein result from my end of cycle on Friday. That clearly is because I do not care. I was also incredibly ill on Friday and the only thing I was thinking about was my bed. Correction, I was also thinking about EMan’s paw. I do not care now, not really. It has plateaued and on that I am certain. Well, I just wrote that I do not care, but I would care if it has gone up… I should probably check that one out. Goddamn.
So, anyway, I like a little flutter now and then, but I will not be taking any bets on the fact that I will be going in for my transplant in 5-6 weeks time. I am planning to go in for my transplant in 5-6 weeks time. I will be absolutely furious if this is not the case, but I am well aware that these things can change. I am aware of this because my treatment seems to be based on this principle. I have every intention at my next appointment to tell the Medically Trained People this. At my next appointment I want a date. I probably will not get one. At my next appointment I want a signed contract saying that I will be having my transplant and this will happen by mid August. I definitely will not get that. It is what I want however, some sort of guarantee that things will not change againand I will not be in a position where I have to convince myself that something I have no faith in, is good. Nobody knows how I will respond to my treatments, but I hope at some point in my life, I can reach a stage where there is some sort of rigid plan with my treatment. I would like to look more than three months ahead. Hell, let’s go crazy. I would like to look four months ahead.
Time will tell. A Medically Trained Person, who has absolutely nothing to do with my care said that there is nothing I can do about all of this uncertainty and I just have to let things happen. He is right of course, and I will do as advised, but come on, can somebody, anybody, just give me a break. I beg of you.