#10 Practice Gratitude

January 13, 2022 0 Comments

What are you thankful for?  Take a second and look around you.  Wherever you might be reading this, it’s likely that there are at least three things that you can find to be thankful for.  It could be something as grand as a loving spouse all the way down to something relatively and seemingly insignificant as just good weather.  I say “seemingly insignificant” because if you’re thankful for it then it’s anything but insignificant.  In the moment there can always be something that we are grateful for.  

When my original transplant date was indefinitely postponed, I went down a deep rabbit hole of what if’s.  I was still going to get a transplant but the timing was questionable.  It was then that I realized just how difficult it was going to be.  I’ve told friends and family that getting the transplant was very similar to trying to force the stars to align.  We have zero control over the celestial bodies so it was an exercise in futility.  My particular case of chronic myelomonocytic leukemia (CMML) is fairly aggressive.  Most modern medicines have a difficult enough time keeping mild cases of CMML under control.  CMML is only treatable in the long run via transplant.  All other means are just to get it under control enough to give the transplant a higher success rate.  

With the tall order of bringing everything together, it was easy to get lost down a deep negative spiral.  The coordination effort necessary to go to transplant was better properly explained at this point and it seemed nearly impossible for everything to line up.  

First was finding a donor.  I am fortunate to have a lineage that goes back to areas of Europe where they are very good at getting on the international donor list.  I had three 10/10 donors that popped up very quickly.  That was step one out of the way.  

Second was getting my disease under control.  We needed to have my white blood cell count down, my neutrophil count down, as well as my blast count.  It appeared for a time that some of the oral meds were working but as my disease progressed, the medicinie’s efficiency declined.  This meant going on more aggressive medications or trying IV chemo.  

Third was hoping the bone marrow transplant floor had an open bed and getting that scheduled.  There are many other blood disorders and cancers that require bone marrow or stem cell transplants so there might not be an available room when the time comes.  

These three were the primary drivers but there are other minor things that needed to happen so that we could move forward with the transplant.  All said and done and my transplant was postponed a total of four times.  Four times when the circumstances didn’t line up properly and everything needed to be pushed back.  This meant reorganizing everything.  Changing my meds, changing the donor’s date, changing my admission date.  It was a constant flux of moving pieces that all had to be coordinated.  Part of my team included a dedicated coordinator whose main responsibility was to look at timing and scheduling.  

Through five months we waded through the mire of disappointment and let downs.  It’s easy to let the negative build up and we can easily crumple under the weight.  This is why I spent a lot of my time being thankful for what I did have.  Things could very easily go wrong, and they did.  But, despite that, I had a lot of things that shone a bright light through my difficulties.  I spent a lot more time through that summer with my wife and kids.  I wasn’t able to work and I wasn’t very physically fit from all the medications but that time was invaluable.  We received a tremendous amount of support from family, friends, and even people that I had never met did some small part to make our burden easier to bear. 

I started doing two things during this time that felt like they had a big impact on my mental and emotional stability.  I started writing down three things I was grateful for and one thing that I was looking forward to.  

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