It’s been a while… I even cheated and used a website to work out how many days it’s been since my stem cell transplant.
I usually put such a delay down to the fact I’ve been too busy getting on with life, which is at least partly true. It’s also, though, because medically my life hasn’t been very interesting, which is both something to celebrate and a remarkable statement to make less than nine months since I received someone else’s stem cells in order to grow an entirely new immune system…
What I’ve been up to (Part 1):
That new immune system has so far being doing a pretty damn decent job (even the late-summer bout of ‘flu didn’t last too long), to the extent that I’m embarrassingly proud when I see other people going down with the winter sniffles that I’ve miraculously escaped so far. Mean? Maybe. But after everything else my body’s been through, I think I can justify a little smugness in little victories such as this.
My blood counts look good: last time they were checked, everything was just about normal apart from the lymphocytes, but even they were a measly 0.1 off the ‘normal’ level – and rising. They help protect me from viral and fungal infections, and have been on a smooth upward trajectory since I stopped taking the immunosuppressant drugs at the beginning of August (with a brief hiatus when they rallied against the ‘flu). Effectively, on a relatively basic level, my blood looks much like anyone else’s!
It looks very much like someone else’s in particular, though. The chimerism tests – which show what percentage of cells come from the stem cells given to me by my donor and which have been produced by any lingering bone marrow of my own – have shown my cells to be 100% donor ever since my transplant. This isn’t always the case, and usually extra infusions of stem cells, or just lymphocytes, are needed if the new team hasn’t quite taken over so comprehensively, so I can add this good news to my – very long – list of reasons to feel exceptionally lucky, and incredibly grateful to my anonymous donor.
What I’ve been up to (Part 2):
You may well be thinking at this point that there really is nothing medical to write, read or think about and we can all go home and get on with our lives. After all, it looks very much as though the transplant’s been as much of a success as we might ever have hoped for; I’ve got a new immune system ready to fight off any nasty illnesses, including any of the mean old leukaemia that might get any nasty ideas about having another go at me; and I’m “too busy getting on with life”, to quote myself.
That’s certainly what a great many people seem to think when they see me, looking healthy (if a bit hairy), going back to work and attending as many transplant/cancer/healthcare/leukaemia events as people will invite me to – sometimes even letting me stand up and talk about myself. It’s uplifting and encouraging when people marvel at how well I look, and I am myself amazed at what I’m managing to do.
It’s a bit more complicated than that, though, on a number of levels. Medically, my blood counts are good and my cells are 100% donor, but this immune system is only around 250 days old – younger than the immune systems of my bug-prone nephews and niece. Even more noticeable – to me, at least, albeit not generally to everybody else – is that body is very much still recovering from the illness and the transplant process. The leukaemia itself; all that supercharged chemo; the wiping-out of my bone marrow; adjusting to foreign cells: that’s a super-compressed summary of what was an enormous and draining attack on my body. Things are on the right track, but there’s still a long way to go.
What I’ve been up to (Part 3):
People have been great. But people see the best side of me. I work a day, and am then wiped out the next. It’s expected and often understood (and my company has been excellent), but if you only see the good moments – and I’ve usually left before you’ll get much chance to see the weary ones – then you may well think my life is pretty much back to where as it was before I relapsed.
On a few social occasions recently, I’ve felt almost as though my speed of thought hasn’t quite managed to keep up with my general recovery: it’s fabulous to be seeing so many friends again, but I don’t yet have the energy or quick-wittedness to be the life and soul of the party… I’m probably out of practice socially after a year of treatment, but there are moments when I’m just hit by weariness and fear I come across as either antisocial or a terrible bore.
So please don’t take it personally if you see me staring blankly into the distance, and do keep trying. It’s not you; it’s me!