Jim’s Story

Site created on February 23, 2023

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.


For those who are curious, here is my medical journey thus far:

In 2016 after seeing a dermatologist several times for a weird “sun burn” which refused to go away, I was diagnosed with Cutaneous T-Cell Lymphoma. CTCL is a rare cancer that lives in the skin, manifests as a rash, is very slow growing and treatable, although not curable. For the first couple of years the CTCL was treated simply with light therapy. I stood in front of a full body UV light-box for about five minutes several times a week. After that I went for a couple of years to KUMED to receive twice monthly apheresis treatments. Basically, I was hooked up by an IV to a kind of washing machine on spin cycle that over the course of a couple of hours spun out the T (white) cells in my blood, exposed them to UV light and returned them to my body. During these many months I was simply living with the disease, suffering no ill effects and annoyed that this was considered “real cancer” at all.

In most cases CTCL responds well to one of these first treatments so they simply continue indefinitely. However, in some cases the disease continues to progress and needs more drastic intervention. Just over a year ago my doctors noticed the blood levels they had been monitoring were spiking, indicating the disease was taking hold in my blood and lymph system and was no longer responding to the treatments. I felt fine and the CTCL was still slow growing, but the real danger at that point was what could happen if the disease was left to progress. In July 2022 I began chemotherapy every three weeks and made plans to retire in November from Pine Ridge Presbyterian Church after 28 years as pastor. Chemo was not ever to be a long-term cure but the beginning step in a long process of a bone marrow transplant (BMT).

My only brother, Dan, was identified as a full match and graciously agreed to act as my donor. As it has gotten closer, I don’t make as many jokes about my little brother as I did in the beginning. “His bone marrow is his best feature,” still makes me smile, but I am overwhelmed by his great gift of life and love. That makes me tear up every time.

The first week of April I began full body radiation, five days a week for six weeks. Again, it was not to cure the CTCL but combined with the chemo, it has all but alleviated the disease, so that the BMT has the best chance to be successful. At the end of these treatments, I am left with growing fatigue and the realization that this is “real cancer” after all.

On June 5th I will enter KUMED here in Kansas City for some final radiation to my lymph system and drugs to suppress my own immune system in preparation for the BMT June 16th. After I receive the transplant, which is simply an IV of my brother’s bone marrow stem cells, I will stay in the hospital for a few more weeks and then be released to isolation at home for several months guarding my fragile immune system as it regrows.

I have always known BMT offers high rewards at great risk. This is the best shot I have to put the cancer into permanent, or at least lengthy, remission. My age, general good health, great support system, and a donor who is a sibling offers great hope for a positive outcome. It can mean many more years with Marcia, loving our family, watching grandkids grow up, enjoying nature and staying open to being surprised by the beauty of life. However, I am keenly aware that the risks are numerous from simple infections that can be turn ugly while my weakened immune system is rebuilding to chronic Graft Versus Host disease. The bad news is that I must have a bone marrow transplant, but the good news is that I CAN have a bone marrow transplant!

I continue this journey with the hope of Psalm 121, “When I look to the hills, where will my help come from? My help comes from the Lord, who made heaven and earth.” And with the trust that although it will be mostly uphill, sometimes frustrating, and often exhausting and lonely, this journey itself will be healing.

This Caring Bridges site is the way for you to follow and share my journey from here and communicate with Marcia as she cares for me throughout my recovery.

Newest Update

March 17, 2024

Journal entry by Marcia Gordon —

Hello friends and family,

We had the best intentions of posting an update on Day +180, but time flies and it is now Day +280 post bone marrow transplant (June 16, 2023).

We have a lot to be thankful for.  Jim continues to improve, slowly but surely.  He was healing well, however around day +150 the lab numbers indicated that they needed to call Dan, Jim’s brother/donor, back in to take some more blood cells for a couple of boosts in order for his cells to fully take over in rebuilding Jim’s immune system.  It was all out patient and did indeed turn the numbers in the right direction.  However, Jim did have a reaction that required a long and high dosage of prednisone with all of the side effects that come along with it—sleepless nights, talking non stop, ordering off of Amazon in the middle of the night, Marcia needing to hide the car keys for a while, etc.  Fortunately, the steroids tamped down the reaction and after a long taper off the drug(s), blood counts are returning to normal.  We are still waiting to see if Dan’s cells completely take over, so prayers are appreciated specifically for that to happen.

Jim began to get his “baby shots” at the first of the year and just finished the second round.  They have encouraged us to begin to venture out a little more, in small healthy groups.  We still mask in public most places and don’t go to restaurants yet.  A recent highlight was having our daughter, Clair, with us for two weeks from South Korea in February.  We also took a short trip to the Lake of the Ozarks to be with part of Marcia’s family about a month ago.

As anyone knows who has ever recovered from a long illness, healing is a journey that takes its own time.  It is also not a straight line and sometimes it is uphill.  But we have learned to enjoy the pace healing sets and the people who have shared this road with us in spirit.

peace+,

Jim and Marcia
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