Be The Match

Blog Post by
Elder Jim Cook
Member of our Presbytery
and Past Interim Presbytery Leader

“This is serious, Jim.  You’ve probably got 6 months to 2 years if you’re lucky.”

I am not the first person to be diagnosed with cancer.  I am not the first person to be given a devastating prognosis.  However, this was the first time that such a “death sentence” had been given to ME.

In early 2015 I was introduced to the term “myeloproliferative neoplasms.”  That’s the official term for a group of blood cancers where one’s bone marrow does not function properly.  I was diagnosed with one form – myelofibrosis – which produced no unpleasant symptoms but certainly needed watching.  Then, in early spring 2018, I began to experience serious shortness of breath.  More tests and a visit to my oncologist resulted in the conversation above.  The myelofibrosis had morphed into “myelodysplastic syndrome.”  There is no cure.

This was going to be a serious impediment to Pat’s and my 50^th wedding anniversary in June 2019. There was no cure, did that also mean no hope?

My doctor told us that my only hope might be a bone marrow stem cell transplant.  However, there were a couple of potential impediments to that plan.  One, my age.  Folks over 70 are not great candidates, so my case needed to be reviewed by a transplant committee.  I envisioned appearing before a group of doctors in a life-or-death job interview and then waiting for a “thumbs up or thumbs down” sign.  I assume it’s not that crude, but whatever it was, I passed.

Second, an even more difficult impediment – finding a “match” somewhere in the world.

While waiting to see if a match could be found, there was a spring and summer of chemo and blood transfusions – to keep me alive long enough to get the hoped-for transplant.  Chemo every day for a week, and then a couple of weeks off and then back again.  Plus, blood transfusions – a total of 16 or so.

One day, when I was in the “pod” at one of the BJC Center for Advanced Medicine Siteman Cancer Treatment facilities, feeling sorry for myself, I met a young man in the chair next to me.  We were both getting chemo.  He was 20 and had just within the last 10 days discovered he had leukemia.  Two weeks before our meeting he had been living the life of a typical college sophomore – looking forward to the next weekend of who knows what kind of fun – and now, here he was getting chemo next to Grandpa Jim, facing a very uncertain future.  My self-pity withered away.

In June, in between chemo visits, Pat and I were able to volunteer at the St. Louis airport to help coordinate transportation downtown for our General Assembly visitors.  This once in a Presbyterian lifetime experience of helping to host the 2018 GA in St. Louis was not going to be missed if I could help it!

Then in late September, a “perfect” match was found in Germany.  My kids and sister’s genetic tests proved to be OK, but not as good as the experts wanted. The process of matching is amazingly interesting but more complicated than I can properly describe here.  But there is a worldwide network available to find a “match” and the match that was found for me in Germany was a “10 out of 10.”

So, we prepared for the transplant.  I was admitted to the BJC Stem Cell Transplant unit and prepared for a month-long stay.  Chemo continued.  I also had “total body irradiation,” which really is being microwaved.  This kills the blood cells that have remained after chemo.  It’s literally do or die now!   Stem cells were obtained from the donor – which is basically a blood draw.  They were packaged like any blood product and a courier was dispatched to transport them to St. Louis.

The transplant was delayed for 12 hours from the original schedule because the courier missed a train connection in Munich.  I had visions of a WWII movie: the Munich train station, its dark, locomotives are billowing steam, a guy in a fedora and long trench coat on the platform, he slips a secret package from one spy to another.  Luckily the bad guys didn’t intervene, and the package arrived safely in St. Louis.  And, just after midnight on the morning of October 13, 2018, my new life began.  No drama in St. Louis – just another blood transfusion – but this time with the life-saving stem cells from Germany.

Then – – – we wait.  We wait to see if I develop any Graft Versus Host Disease.  That can be anything from mouth sores to very serious complications involving most anything.  I was lucky and escaped all of that.  And the waiting also includes the weeks it takes to build back any strength and develop at least a little immunity.  Then, more tests and bone marrow biopsies to see if the new cells are “taking.”  Those tests went well.

Finally, home. In-home physical therapy, more isolation for several weeks.  Limited trips out.  I was wearing a mask before it became a thing.  And at some point … my life really began to return to “normal.”

Today, a little over three years from receiving the “death sentence,” I don’t wake up every morning and smile and say thank you God for another day.  I still grumble and try to sneak in a few more minutes in bed.  But, later in the day – at the strangest moments – I am overcome with gratitude and joy.  The simplest things bring tears to my eyes, because I realize that this is what I didn’t want to miss out on – hearing one of my grandkids laugh, watching the sunset, hearing the rain, eating breakfast with my wife, or just sitting and watching TV with her, or the very best – having our eyes meet.  Life!  Nothing spectacular, but oh, so special.

And gratitude  – so many to thank:  God; the donor; the many doctors; nurses; attendants (including Orlando, who wheeled me back from being microwaved, and ended up running 50 yards pushing my wheelchair so I didn’t lose my lunch all over the hall); the maintenance worker who gave me his bucket for said lunch; the folks who took my blood, and gave me blood and chemo, and tested my genes, and conducted the search, and brought the stem cells from Germany; the folks who prayed for me (some perhaps who are reading this, and friends at Calvary and Oak Hill and Affton PCs); my family; and most of all – my (literally) 24/7 caregiver (well, there was the Garth Brooks concert) in the hospital and for weeks later – my wife, Pat.

There are so many whose cancer stories do not end this well.  I lost a Presbyterian friend in southeast Missouri recently who had serious surgery and then died shortly thereafter from his cancer.  There are those who are living with very difficult chemo regimes just to make it a few months longer.  And there are countless other “survivors,” who have stories of their own. Just a glance at our GLPBY newsletter prayer list or any of our congregations’ prayer lists shows so many of our friends are going through all sorts of difficult health challenges.

And I do not assume I am forever immune from more health issues.  We all face that uncertain future. But my experience has given me the opportunity to realize anew the many wonders that God has given us.  I am blessed every day.  My wish is that all who read this will also be blessed with good health and a renewed joy in life itself.

Thanks for staying with me for this long story.  Please consider volunteering to be a stem cell donor!  Save another life!  And see the item nearby about “Be The Match.”

Elder Jim Cook
Member of our Presbytery
and Past Interim Presbytery Leader

As we look back to 2020, it is with mixed emotions. While we have a lot to be grateful for, there have been ups and downs. We learned to do virtual church, work from home, teach our children. And at the same time, I am pleased to report that Be The Match impacted 6660 lives, the most in its 30+ year history.