I was a few months into the non FDA administration of my new miracle cancer drug Gleevec. The side effects were harsh as expected but the expected outcome of success at a gradual pace made it worth the while. I was making bi- monthly treks down to the city to see Dr. Dave for bloodwork and general examination. Even though the trial was over, Gleevec patients needed to be closely monitored for any severe side effects and to make sure our responses were consistent. At last, there were no more bone marrow aspirations. Thank God. My hips were permanently scarred by so many deep intrusions into my bone. I knew that there were more to come at some point but a break from the action was well deserved, mentally and physically. Since patients in the Philadelphia area that were taking Gleevec were far and few between, remember “rare” cancer, information about other patients in the same realm was hard to share. Information about dosages, side effects, outcomes and general discussions by contemporaries were non existent.
Most Leukemia patients at the time of my diagnosis would get up to date information about their disease through a small international website called CML BY ANJANA. A young Indian woman had started this very informational chat site to learn all that she could learn about CML and ascertain information about the cancer. Anjana, herself a scientist, was having her own crisis as her husband was diagnosed with CML himself. Her site was amazing. Informative, insightful and compassionate, Anjana would answer and break down any questions for anyone who needed useful information about the disease. I myself used her site often and followed along with the chat. So much information could be found about our cancer. A collaboration of ill people seeking answers and dishing out love and well wishes along with hope and civility.
Through the website, I received an email from a gentleman named David W. He was a CML patient who lived in the Philadelphia area and was in search of other like people who were currently taking Gleevec. He had recently been diagnosed with CML and immediately began a regimen of the newly approved drug. His desire was to find a few recipients of the drug who might want to get together for dinner and discuss our similarities and exchange conversation about our experiences with CML and Gleevec. The first Philadelphia Chapter CML Club was born. Dave and I along with three other woman recently diagnosed met at an Asian Fusion style restaurant in Center City Philadelphia. The conversation was deep and very scientific. After the usual pleasantries and introductions we delved deeply into our stories, our situations, our medications, our side effects and our outcomes. I was the only person in the group to have been diagnosed pre- Gleevec and had suffered through years of medical torture, multiple aspirations and a bone marrow transplant. The main gist of our conversation was that we all were responding to the drug. We agreed to meet again after a three hour soiree and followed up at one of the women’s homes as our second spot. The meetings continued every third month and as our numbers grew, we needed to find a venue large enough to hold the many other new patients joining the club. After about eight months, the Leukemia/ Lymphoma Society of America became our new meeting place. The huge LLS building near the Philadelphia Airport would accommodate our crowd along with a Chapter nurse and LLS administrator to proctor and answer technical medical questions…. much better. My participation began to wane after a while. Being an original founder, I needed a break. I was on the road to recovery. The club had so many new members who needed a lot of care. And hope. It was dragging me down. I needed to turn the page and handle my own recovery. I wasn’t being selfish. I was just the longest diagnosed patient there. I’d been through so much more. I was still not in remission and still not seeing that light at the end of the tunnel. I left the last meeting that I would attend with only well wishes for all and never looked back. I was looking for that light and had all the information I needed. My philanthropy had not ended though. I owed much more. Much more.
Next Up: The Beginning