Last week, I said that I had some good news that I was waiting to share with you. I think I can share it with you now, on the condition that once it is out there, that it is not discussed again for at least three months. This rule is for me. As it turns out, the good news is once again bittersweet. Maybe bittersweet is the wrong word. Scary and surreal. The news is scary and will involve me making a decision, that in my 28 years, I never thought I would have to make.
The reason for my delay in sharing it, is that I had to discuss the consequences with my doctors, and I had my first trial appointment today. The news is amazing and is against some significant odds… Last Thursday, my sister received a call from UCH to inform her that she was a match to my stem cell. There was a 25% chance of this being the case. I had not allowed myself to even think this was possible because the odds were so low, and I really have been suffering in the luck department of late, and when Big Sister told me last Thursday morning, I cried with relief and I cried tears of hope. It seems that my life now rests on a careful balance of odds and statistics. It is not fair, and I am allowing myself to dwell on it today, but when I wake up tomorrow, I know that I would have moved on. It is imperative to my well being and thus my recovery that I do.
A match to my stem cell means that I, hopefully, will be eligible for a donor stem cell transplant. I also discovered today that Big Sister, who is quite simply amazing, I may have mentioned this before, is not only a match, but the best sort of match for me. A negative and a negative. There are more medical terms involved, but I did not write them down, and as I said yesterday, my short term memory is somewhat lacking because I am a walking pharmacy.
So that is the good news.
The bad news, or the less good news, is that we cannot even consider this stem cell transplant until at least 90% of my MM has gone. The crux therefore, is that I have to continue with my current treatment and hope that it works. There is approximately a 50% chance of the trial working. These odds cannot be more definitive because it is still in trial. If it works, I would then be eligible for the stem cell transplant. If it does not work, then I will have to undergo another treatment programme before it can be considered. Yet more odds. I am not even considering the odds involved smashing this MM into hibernation, I daren’t.
My energy now then, as it was yesterday, is successfully getting through my trial. It has to work.
The donor stem cell transplant is called an allogenic transplant, which was described to me today as a ‘high risk procedure’. The details are sketchy, because we need to wait for the Myeloma to go before I meet with the transplant team and find out more, which will be in at least three months time. It is for this same logic, that I only discovered today what the transplant involves, the doctors did not want to get my hopes up when I was in hospital. What I did find out, and this is the scary, scary part, is that there is a 10-20% chance of mortality with this procedure. Put it another way, this procedure, historically, can result in a 10-20% chance of death. Equals my death. The risks lie in what happens to my immune system in the 6 weeks I would have to be in hospital undergoing the treatment, and the three months afterwards as my body takes to the transplant, and the odds of me rejecting the donor stem cell. Alternatively, there is a 80-90% success rate. Perversely, if successful, the transplant will give me the highest odds of a long remission before my next relapse. This means it will give me the best odds of leading a normal life. A life where I can carry on where I left off 4 weeks ago. I can meet a nice man and get married. Or live in sin. I am not fussy. The man could be a farmer and we can have special cuddles in the morning in the pantry after he has milked the cows and the kids, I may have (yet more decreased odds) have gone to school.
Understandably, I have thought about this all day and I have discussed it with my nearest and dearest. All have said, rightly, that everyday there is a chance of people dying. Every time somebody leaves their house. Or even in their house. As Big Sister said today, there is a chance of me completing the trial successfully, without the stem cell transplant, crossing the road and being hit by a car. Odds and chance. Odds and chance. Odds and chance. If I think about it this way, the odds I was given today seem less daunting.
I do not intend on thinking about all of this again for a while. Two days ago, I thought my life would return to normal by Christmas; this is likely not to be the case now. I will be going on half pay, I really am ever the pragmatist. So I have set myself a new milestone for success. My 29th birthday in May. That’s the new goal and by hook or by crook, I am going to see that birthday and I am going to have one fucking awesome party. I promise you that. I am promising myself that. For sure.
Bloody mortality. Bloody odds. Bloody chance.
I don’t want my life to rest on odds, but for the time being at least, they are going to feature. I am just going to have to try my damnedest to improve these odds, by any means. That is the way this goes. That is where my positivity comes in. Rest assured though, when I wake up tomorrow, my focus will return. My glass will be half full. My immediate focus will return to getting rid of this myeloma, as it was yesterday, and as it has been since I was diagnosed 27 days ago.
All of this, so that in three or four months time, my Big Sister can give me the best chance of living and these are the odds I like.