Twin Cities 5K Walk/Run
The Multiple Myeloma Research Foundation is delighted to recognize Team Ken as the MMRF Spirit of Hope Honoree at the 2016 MMRF Team for Cures: Twin Cities 5K Walk/Run.
Team Ken’s Story
When Ken Port was diagnosed, he and his wife Paula became members of the MMRF community and quickly found the race calendar online. Ken said, “As an academic, I’m very curious about education, learning, research, and analysis in MM. The MMRF seemed to be primary focal point of all this activity. In addition, the MMRF’s support of research in MM is simply amazing. I’m very interested in helping MMRF’s mission in any way that I can.”
Ken was diagnosed in September of 2013. By January of 2014, he had one of “those” conversations with his Oncologist, that he was out of treatment options and he should get his stuff in order (as if it wasn’t). However, he had a very resourceful spouse, Paula. Paula wouldn’t accept that answer and started doing research on the MMRF site. She found references to a new drug called Kyprolis (carfilzomib). She immediately contacted Ken’s Oncologist and asked if they could try it. He said he had never used it, but sure, he was willing to try anything.
Ken has Bence Jones Kappa Free Light Chain MM. His light chains at diagnosis were 23,000. In January of 2014 when the doctor said he was out of options, they were about 18,000. Within 3 months of starting Kyprolis, his light chains were at 500 making him eligible for a stem cell transplant which he then had in June of 2014. The stem cell transplant and maintenance therapy gave Ken two full years with minimal residual disease. In June of 2016, he relapsed. His light chains jumped to about 609. As a result, he started taking daratumumab and within one month of treatment his light chains decreased to 73. He has had three treatments so far, two in-patient, and one out-patient. He reacted to the first treatment with rigors and a fever. For a bit, it appeared that he wouldn’t be able to continue treatment. However, his third treatment as out-patient was uneventful. Other than that, his so-called “journey” with MM remains unknown and unwritten.
“Journey implies some longitudinal consistency. With my multiple myeloma, there is no consistency. There are also usually happy endings to “journeys.” As we don’t know the ending of this, we don’t know if it’s happy so I hesitate to use words like “journey.” Fits and starts is not a journey. It’s an irregular path through thick and thin. Regardless of what you call it, we have found the MMRF to be an instrumental authority in understanding, to the extent that is possible, this disease and, thereby, playing an informed, active role in my treatment.”
Through all of this, it has confirmed to Ken that there are some pretty special people in his life, in particular, his wife Paula and his sister Terri.
“Paula has been simply amazing. She gave up everything to take care of me. She is my consummate advocate, researcher, and caregiver. I say she has acquired an MD in Myeloma. Much of her knowledge as well as the motivation to understand more was derived from the MMRF. She is vigilant in responding to my side effects, treatment issues, etc. I knew she loved me; I just didn’t realize how much. My sister, Terri, has also been remarkably supportive and helpful. I have a large family and they have rallied.”
To Ken this award means the MMRF has recognized the amazing support he has received from his team and that the MMRF realizes that he is here because of that support. Ken says this to Paula, Terri, and his other team members all the time, but this is an amazing opportunity for him to say loudly and publicly, how much he appreciates that support and that his entire community recognizes it, honors it, and cherishes it.
“To have MM takes a very large village. From physicians and researchers around the world to team members to extended family and spouses, they are all part of a very important village. MMRF is one more important part of that village. To me, the award means that this very large village is rallying. That is the most gratifying thing to see and be a part of.”
Paula keeps a saying by her nightstand. It references how important it is to be like a tree in a strong wind. “We bend, we give, but we don’t break.” Ken finds a lot of solace in that saying.
“No matter what life or MM decides to throw our way, we are like a very strong tree in the wind. The wind might make us bend a bit, but we will spring back and stand up straight. After all, what else is there? If you know Paula the way I know Paula, I know that giving up is not an option.”
The MMRF works tirelessly to find a cure to extend the lives of patients just like Ken, and is proud to honor Team Ken as the 2016 recipient of the MMRF Spirit of Hope Award, given at every MMRF 5K Walk/Run event to a person or team who inspires hope and shows extraordinary commitment to the MMRF. Team Ken has touched the myeloma community with their strength of character, their kindness, and their embodiment of hope.