“Lori! Your voice is missed! – Pat Killingsworth
Before I launch into what is happening with Dave and I, I have to spew my pain at the loss of Pat Killingsworth. OMG! How can this happen? Pat and I had a very tumultuous beginning in our friendship. He was anti SCT and very ANTI LITTLE ROCK! He and I had MAJOR SPATS! It was private and intense. But in the end he sent me his newest copy of his MM Book and in it a note said, “You convinced me. I added a section about the treatment in Little Rock.” I came to love Pat. We met up for my first myeloma support group in Spring Hill, FL. My in-laws live there. I contacted him that we would be close and hoped we could meet in person. He invited me to the meeting and then pretty much bush whacked me with introducing me and asking me to tell our story. I realized as I was sitting there, that I could tell our story, so I did. After that, we met for breakfast at a local diner. He was very generous and kind to Dave, even though it was clear that Dave had very little understanding of his disease. This was a major problem for Pat, not Dave, just in general. He and I would go at it about this point. I would explain to him that each “couple” has their own method of dealing with disease. For us, it was me figuring it out. It didn’t mean Dave was uninformed. It just meant that it what was worked for us.
Pat and I had many conversations along this line. He was so passionate about gaining knowledge about multiple myeloma. So passionate that I worried about him.
A following year we met his “better half” Pattie. What a treat it was to meet her. When you meet Pattie, you get it. Pattie is the very grounded part of Pat. She is a treasure.
I recently ran into Pat in Boston. We were working on a project Multiple Myeloma related. I didn’t know he would be there. How stupid of me. As I walked up he looked at me and me him, and he said, “What? You don’t recognize me?” He was bald and had a mask on. Give me a break Pat! Seriously? I laughed and said, “Pat? Is that you?” He smiled and we hugged. I really did come to love him. I’m still processing the loss of him like many of us. And for the record, it will be your voice, your smile and your heart that will be missed
So Dave’s Myeloma started creeping back last year (2015). He had stopped going to Little Rock. When it became apparent that his Myeloma was coming back I pitched a two year old hissy fit. “We are not letting your local handle this” I said. “Would are going to LR handle this. So off we went, back to Arkansas. The place I LOVE.
All the tests there confirmed Dave’s MM was indeed creeping back slowly. We resumed his maintenance therapy (REV/DEX/VEL). It contained it, but didn’t reduce it. So we began the Pomlyst/DEX/Krpolis regimen. His myeloma dropped like a rock.
However, he had some abnormalities show up on his Echo that put us in a tailspin.
Now we are headed into Darzalex tomorrow. There is so much to be hopeful about with this new immunotherapy. I found a great curetalk.com panel discussion about it with my friends Gary Peterson, Jack Aiello, and Cynthia Chemielesi http://www.curetalks.com/event/rsvp/Everything-you-need-to-know-about-Daratumumab-and-Multiple-Myeloma/248/
So here we are, out of remission and moving forward. It’s not a happy scenario, but one we are dealing with. And because Pat Killingsworth pushed me forward, to get back to my blogging as a voice that needs to be heard. For you Pat.
Keep the faith. Don’t give up. That’s what Pat would tell us. I miss you friend. I miss you something awful.