I attended a unique gathering last night. The local hospital where I was successfully treated for leukemia held its 12th annual reunion for survivors, their family/caregivers and donors. It had been about five years since I attended this yearly event. (When my friend and fellow patient, Debbie, passed away, I just no longer felt like attending without her as my “date.”) Last week, I had my yearly checkup at the hospital. Both Amanda, my very favorite phlebotomist, and Dr. B., my oncologist, encouraged me to attend the reunion this year. (Dr. B. even presented me with his own, personal invitation, since mine remains “lost in the mail.”) I am happy to report that I am grateful that I chose to attend this year’s event, along with my sister, who acted as my caregiver nearly eight years ago. The event, which focuses specifically on blood cancers (leukemia, lymphoma and multiple myeloma) has doubled in size since my last appearance, which is a great thing! Apparently, more and more folks are successful in their battle with these dreaded diseases.
I was pleasantly surprised to see that much of the staff responsible for my care so many years ago are still actively employed and dedicating their lives to this cause. There were lots of hugs and photo opportunities. (The staff is always happy to see their former patients healthy and happy and with hair:) The evening always includes a sit-down dinner and a speech by the medical director. There was also a tribute to the family of a long-time patient who ultimately lost his battle with multiple myeloma. The final presentation was delivered by a current, also kind of long-term patient. Rick, now age 31, was diagnosed with Acute Promyelocytic Leukemia about four years ago. (This is the same, rare type of leukemia that I was diagnosed with in 2003.) In an often funny and poignant speech, he spoke about his five relapses, two anonymous bone marrow transplants, and the serious side effects he has had to endure as a result of his treatment. He shared how difficult it has been to continue the fight after so many setbacks. He is ever hopeful that he can continue to work as a computer programmer, and has also started his own band, where he can share his gift of music. In conclusion, he said the following, “I just want my life back.” This one sentence resonated with me. So many times during the past decade I commented to friends and family that “I just want my dull and boring life back.” I could feel the angst and frustration that Rick was expressing.
After dinner and the conclusion of the program, my sister and I made the rounds, catching up with more of the staff. I was also sure to be present and accounted for when it came time for the group photo of leukemia survivors. As we were leaving, Rick was seated near the door speaking with fellow attendees as they left. My sister and I patiently waited for an opportunity to speak with him. I introduced myself as a fellow APL survivor, and leaned in and said, “I want you to get your life back.” Rick, my sister and I then had a brief conversation about our common illness and how we were diagnosed. He invited my sister and I to come hear his band (which we intend to do), and then I agreed to email Rick and friend him on Facebook.
And so it would seem that I was supposed to attend the reunion last night, not just for the camaraderie with the staff and fellow patients, but to meet Rick and hear his story. I decided to write this post so I could ask the universe (and my faithful readers) for help in keeping Rick in our thoughts and prayers so that he can get his life back!
With all its sham, drudgery, and broken dreams,
it is still a beautiful world. ~the Desiderata
I’m glad you went to the reunion…godspeed to Rick.
I’m crying – mixed feelings. Just before Arun lost his battle with Burkitt’s Lymphoma last year, he said with frustration “I just want my life back!” His life, before his diagnosis in December 09 had been full of joy and friendship and activity. For 5 months he rarely left a hospital room and was not even allowed visitors of his age for 3 of those months. Our lives too were completely taken over. Until that point I had never realized what families go thru, or how many friends appear with support and help. I never let Arun know that he was likely to die and I denied to myself how much he was suffering. We just had to keep going, but how I wished for normal – for him to be able to sleep comfortably in his own bed and grow his hair back. My response that day was “So do I, Arun, so do I!”. Well, I got my life back and he lost his. It will be a year ago on Sunday. My heart goes out to Rick and I will add him to my prayers. I hope he gets his life and his hair back. I am glad for you. We have to do whatever we can to beat these diseases.
Good post, Joan. It’s a tough group you belong too, but I’m sure sharing your experiences with each other is inspirational.
I have made some great connections with patients and the staff that took care of me during that very scary time in my life. It is a special bond, and one that I would not trade for anything.