One PCR result does not a trend make - but I'll take it for now and revel and celebrate just the same!
For one thing, the last time I stopped a TKI and switched to monotherapy IFN, within two weeks I was no longer PCRU, I was MMR, and then in another two weeks after that I was at CCR, but I stayed steady at CCR - until switching back to a TKI AND IFN...
I am pretty sure you might have guessed by now that the result from the October draw, taken one month after stopping TKI is - drum roll please.... NEGATIVE....
My next check up is this coming monday, and we do another draw which will tell the tale of two months of no TKI therapy. You might be wondering how do I feel? Well I feel very good actually, less fatigued, less achy. But it is more than just those physical things, there is a deep feeling of wellness that I cannot even begin to describe. It is something that I believe I haven't felt in, well, decades...
What's even more interesting is that people are commenting that I look different. I am not sure I look different as much as I feel different, but maybe it might be because I am just smiling more?
The period of time spent waiting for the results of the PCR draw was a time of good reflection for me. It occurs to me that CML in most cases, creeps up on us so slowly and insidiously that when we think about it, we cannot remember the last time we felt perfectly well. A few weeks ago I was meditating on my childhood and I was especially thinking about my "active" childhood. I remembered summer vacations with the family on Cape Cod, the smell of the salty air. The crispness in the very early morning and waking up really, really early, full of energy. If the tide was low, we would run down to the beach and go clam digging or wade out a bit and go quahogging. Then we would set off on other adventures, like rowing the Sinbad around in the bay, riding our bikes for miles or walking to the golf course at dusk with our hoodies on to watch the bats collect on the water tower....Back in New York, I was just as active - running, riding my bike or swimming forever...It was very good to take this reflective journey through meditation back to my childhood. It gave me time to think about how much I missed that energy. Happily some of it is coming back. When I work out in the mornings I push myself a bit further, sometimes my lungs burn just a bit, but it is a good burn, the kind of burning feeling when we were young...The good news is that I seem to recover much faster, and sleep a bit sounder....
There is no way to know how long this will last. According to the literature, I probably still have the original LSC. But I am not going to ponder on that for now.
What I am most grateful for at this moment is the fact that I feel well, I am happy, and that I am experiencing some downtime from drugs and CML.
In my excitement to spread the good news it became painfully evident to me that in my entire network of fellow CMLers - which is very extensive, I know of only three people who can entirely relate to what is going on for me at this time.
So, my meditative thought for today and for the next while is that there needs to be more opportunities for my fellow CMLers to get on this very path and be able to experience a safe break from drugs.
May we all be well and healthy!
