A bit late but happy new year everyone! In my last blog post I talked about my last donor stem cell top up. I have had all the donated cells they had frozen in the lab.
Since then I have had my 4 and 8 week tests to see what effect the cells have had, just waiting on the second set of test results.
Although the donor stem cells have run out and they initially said that would be my last top up, the consultants are now undecided and may ask my generous donor to donate a few more stem cells.
As it stands two of my chimerism results are not too bad and the other is at 30%, they do not think I will ever reach the ideal of 100% chimerism but the question is how far they push the top ups as each time I have a top up it is a larger dose of cells and the risks increase.
While two of the results have at a snails pace gone up one has been slowly decreasing so the question is are my cells going to behave and stay at the level they are, or decrease and cause me to relapse eventually?
Uncertainty is something you have to learn to live with when you have had a stem cell transplant or any type of cancer or longterm illness. You can sometimes feel a jealously to those who seem to breeze through life thats inevitable you cant help it, lets face it we have all felt a bit of the grass is greener at some point, but you wouldn't be who you are without all you have gone through.
You learn to look at things from a different perspective. As what you can and cant do changes smaller goals become more important, enjoying the things you can do when you can do them.
You cant focus on the ‘what if’s’ or you will drive yourself mad just go from day to day and appreciate the things you do have and can do.
All my other problems remain stomach and joint problems etc. New to the list is soft tissue swelling on one ankle and my lower back. As you know I have lymphedema, but these are definite swollen lumps rather than fluid.
My consultant used ‘Dr Google’ to see if it could be linked to my Gata2 but as yet we don't know the cause, they are not painful just annoying so not too worried about that. Whilst using Dr Google during my appointment the consultant did discover I am more at risk of other cancers than usual after a stem cell transplant because of the Gata2. So some lovely tests to look forward to in the near future, ladies will know what I'm talking about squashed boobs etc ha