Heart of the Storm

I have the feeling that the heart of the storm is approaching. Next week's MRD will dictate whether we're dropped straight into the main event of Kay's treatment without a break, with a high level of cancer still in Kay's system and the likelihood of having to compromise on the quality of the donor match. Or whether the cancer in her system has continued to respond to treatment, whether we get a short break and some time to marshall our strength and whether there is more time to find better donor.

The first alternative is very worrying. It means that Kay's cancer has remained resistant to further treatment and that we will be pushed into a BMT in compromised circumstances. My gut feel says that this will be a much harder path than the second alternative. And what also worries me is that so far at every junction we have taken the more difficult route. Irrespective of everything that we have been told, everything that we have considered, I don't have the sense that Kay's cancer is particularly amenable to treatment. So it really would not surprise me if her MRD is above 10^-3 next week, that we have to immediately deal with another round of heavy chemo, that either Marion or I end up being the donor, that the BMT is harder and less certain as a result. Nothing about this situation so far has offered us a break and it doesn't feel to me like a situation that is going to offer us a break.

I don't mean to sound defeatist, defeatism is not in my nature. However Marion and I have joked in a fatalistic way for many years that the light at the end of the tunnel is the next train coming and that we have seen our (un)fair share of tunnels in the last 12 years. It would therefore be entirely in keeping with our history for the tunnels to continue for a while yet, for us to be tested even more deeply than we have been.

Just writing this statement makes me feel tired all over. And when I look at Marion I see that her face needs ironing and that her tears are never far away.

Please can we have a break? Can we have a little ray of sunlight apart from Kay herself? Can we avoid having to face the darkest and most difficult path?

There was a time when I was a little kid that whilst staying with my uncle I stole a pocket knife out of a draw in his house. Later my mum found and recognized it. When my uncle next visited she took me into the kitchen, gave me the knife and told me that I had to give it back to my uncle and apologize. Otherwise she would tell my uncle and she would ensure that the consequences would be infinitely worse. I remember I absolutely did not want to face my uncle. My legs felt heavy and my feet stuck to the floor, my head hung down like it was too heavy. I had to drag myself to face him in front of everyone in the room and every step became harder, like some kind of anti-gravity. To this day I remember the whole thing clearly, the fear was so great. The only thing that kept me moving was knowing that there was no going back because the alternative would be worse. It wasn't strength of character that made me face my uncle, but rather fear of the alternatives. (I suppose you could always argue that it was mum's strength of character that drove me on).

And this is how I feel about the remainder of Kay's treatment. There's no going back, the alternatives are infinitely worse. So the only way to go is forward, whatever happens. That it's not strength of character that's going to get me through this, I absolutely do not want to face whatever comes next, but simply fear of the alternatives, fear of failing to do the right thing. Fear of not looking after Kay, of not putting her first. Fear.

In every other situation that I've faced where fear was a factor I have dealt with the it by looking it in the eye, by understanding what it was about. For instance, when Verum has been in a tight financial corner, when we have had to face the very real prospect of running out of money, of failing, when I have been waking up at night covered in sweat from stress and fear, I simply looked deeply into the figures, I worked to understand the situation, to look into it and beyond it and to decided what to do. Fear then vanished, banished by the light of knowledge and the power of action.

But this situation is different. In this case fear of the known is worse than fear of the unknown. For instance, imagine that I sat down and did some internet research on bone marrow transplants from haploid donors and learnt that the success rate was 20%. Imagine that I looked into the survival rates of children with the kind of relapsed leukemia that Kay has and I learnt that it was 15%. What would I do with this information? I can tell you: it would paralyse me. It would destroy my (crumbling) mental control. It would mean that every minute of the day & night I would be haunted by images of life-without-Kay. Further, even with this knowledge there are no actions that I can take to changes thing, to bring about a better result. In principle our lot is already cast in the genetic signature of Kay's cancer and there's nothing I can do about it. So in this case fear cannot be banished by knowledge and the power of action. So I have to live with the feeling of having to drag myself to the moment of reckoning, with every fibre of my being begging to find an alternative, any alternative that means that I/we don't have to face that moment.

So, it would be so very nice if we got a little ray of sunshine, some indication that fate has not completely set its face against us.

BTW, my uncle, bless him, forgave me and gave me the knife. A lesson that I have remembered all my life.