Triumphing over adversity. What does it mean in myelofibrosis?
We are under attack, outgunned by an enemy acting with stealth and brute force, whose numberless forces have penetrated deep behind our lines. Miraculously, sometimes we counter-attack to gain ground, sometimes we can slip off the battlefield to recover.
But, after all, what can it mean to triumph in this battle against MPN?
When life itself is a fatal undertaking, surviving is no measure of triumph or defeat. Our friends and families rejoice when we emerge wounded but whole from the MPN battlefield. Mourn our loss when we fall.
For all things there is a season.
We don’t have to succumb to myelofibrosis. But if we do, if help arrives too late for us, it will surely arrive for our brothers and sisters down the road. All we can do is honor our many fallen heroes, the efforts they made to share their gifts, the knowledge gained from their trials, and their fierce resistance to the brutal enemy within.
Today, report of another fallen warrior, Kelley Lanier who left us June 26. And how many can we number in all these years of our MPN trials? From each we draw courage and hope that we too can endure with a generous, loving spirit and fight like hell to survive as well and as long as we can.
The tribute to Kelley is both a moment to remember, to mourn our loss, and a stark reminder to be courageous and hopeful in the awful heat of battle.
The last five have been spent dealing with MPN. Given 18 months to live at diagnosis Kelley fought back with clinical trials and was able to stretch that prediction to five years. We spent that time enjoying visits with our daughter Jennifer and her family in North Carolina. Through the extension of his life by clinical trial treatment, Kelley had the joy of watching his grandson grow from a toddler to a inquisitive eight year old who shared with his PePaw a love of Harry Potter and Doctor Who.
Kelley enjoyed travel and did not let MPN slow him down. We had adventures in Central Europe and toured national parks in the western US. Kelley was a voracious reader on a myriad of topics including MPN. I think he surprised doctors with his breath of knowledge on the treatment and research of his disease. I would tease him that he would earn an honorary MD.
Kelley’s last five years were not worry free but at the same time we tried to enjoy every moment, to appreciate each other and the people and things around us.
His loss will be deeply shared by many. Life goes on. But there is a hole in the lives of those whom Kelley shared his life with and loved. Judy Collins was a favorite singer of Kelley’s from years back. We played this song for him on his final day and it fits. It is a song/prayer that honors the arc of all of our lives. I would like to share it with you.
Kelley, too briefly known
The Kelley Lanier I knew was a quiet, thoughtful man. Although long a part of our MPN community, he only emerged for me as I prepared for the ASH meeting in New Orleans, last year. He e-mailed offering to help.
We had never met or talked before. He and his wife, Suzie, picked me up at the airport and drove me to the Convention Center. And when the cheap dump of a hotel room I rented (against his horrified advice) turned out to be even worse than feared, he found me another hotel. And at the end of the Meeting, he arrived in the morning to drive me to the airport.
To so extend himself for a stranger was extraordinary enough, but Kelley was suffering from the effects of myelofibrosis, had already failed one trial and would soon leave another as his counts dropped. I only learned all this and got to truly know Kelley in our exchange of calls and e-mails these past few months. His knowledge of MPNs was deep.
Kelley acknowledged the high level care he received from his Mayo Clinic trials and he also noted, publicly, how abandoned he felt to be ignored once he was dropped from trial because of lack of response. He was concerned that in clinical trials the patient was secondary to the outcome. We offered to publish his comments anonymously but he waved off that easy route. “I plan to submit my email as a signed comment, with more emphasis on having a doctor who is solely focused on you and your disease.” And he did.
When I hadn’t heard from him for some weeks, I e-mailed to see how he was. Suzi responded “Kelley passed away this past Thursday of pneumonia.” Even with a WBC of 1, Kelley fought to hold on for more than two weeks. In the end, Suzi reported, “He gave his disease a good run for its money but in the end his body was just worn out. He died peacefully.”
Comments on: "Special Report: Kelley Lanier, victory over adversity" (9)
What an inspiration he was. My prayers and thoughts are with you and your family.
Wow. What a guy. He is an inspiration for those here who knew him. And for me as well.
A beautiful tribute, Suzi and Zhen, for a brilliant MPN friend. Though I did not know him, I want to honor his fight and courage. May we continue the fight he battled whether we have an MPN, or love someone who does.
My deepest sympathy to the family and friends of Mr. Lanier. He sounds like someone I would have enjoyed getting to know. I’m sorry to say that I completely understand his feelings of abandonment upon being dropped from a clinical trial. For many of us, a clinical trial may be our best chance of feeling well again. The Mayo Clinic is a symbol of hope for many people, but one that is also out of reach for many. I was able to seek treatment there because of the tremendous support from my fellow teachers, students past and present, their parents, local businesses, amazing friends and community members. The protocol for the trial meant flying halfway across the country to Rochester 10 times in 6 months. I felt blessed to have this opportunity but very troubled by the lack of time that the doctor spent with me at each visit–usually 5 minutes or less. Sometimes it took longer than that to have my blood drawn, especially with the additional vials that were needed for the multitude of “required tests”. And of course, the additional labs were considered “standard of care” for which I was ultimately financially responsible. This is not to say that my feelings about Mayo Clinic have changed or that I wouldn’t do it the same way all over again. But, I share Mr. Lanier’s concern that in clinical trials the patient is secondary to the outcome and pray for the day when these trials are no longer necessary.
What a courageous man and family. He deserved support from the medical professionals who needed his help, win or lose. I am a partaker of services from Mayo Scottsdale and feel anger and shame with Rochester. Peace…………
Zhen, you are just as amazing.
Our deepest condolences on your loss.Gord and Bern Starkman
My deepest condolences to Suzi and family. Thank you Kelley for your example of living life to the fullest despite your prognosis and for participating in clinical trials which ultimately will help the MPN community.