A life worth living WELL

Almost 4 years ago, I was diagnosed with chronic myelogenous leukemia. As anyone that has been diagnosed with cancer will tell you, it was a complete shock. I was a 30's something mom with 4 kids ages 2, 4, 8 and 14. Ever since that day, I started looking for support from other patients like me. But I had a hard time. CML is rare. In the U.S, about 5,000 people are diagnosed a year. That is very small compared to other cancers. My search for support looked grim. Until I came upon an organization called The National CML Society. I was thrilled to find an organization that was strictly for my type of blood cancer. I am happy to say that I am now a co-facilitator for the Chicagoland area CML connection group (support group). I am so happy to be able to help others and hopefully bring something positive to this experience. On April 21st, myself and my co-facilitator for the Chicago group, hosted the Living Well with CML Summit in Chicago. We had a top CML Specialist there, as well as a LCSW that has over 12 years experience working with patients with cancer. We also had a special guest that is "larger than life", Kareem Abdul-Jabbar! At 7'2", he really is larger than life. He shared his story of his diagnosis with CML and udpates on his progress. Including a few jokes about his diving on "Splash". I feel truly blessed to have been a part of the Living Well with CML Summit. I have pasted a blog that was written about the Chicago Living Well with CML summit below but you can find the story of the summit and all that went on at the link below. http://nationalcmlsocietyblog.org/living-well-with-cml-2013-events-under...  »  Connection   »   Living Well with CML 2013 Events Underway Living Well with CML 2013 Events Underway On April 22, 2013 Dr. Luke Akard, Anita Vargas, LMSW, and NCMLS representatives, Jen Schwarz and Lisa Lewandowski pose for a picture at Living Well with CML Chicago.The National CML Society, in collaboration with Novartis Oncology has set out to bring Living Well with CML summits to patients all across the nation. These summits are one-day, educational sessions that provide those living with CML more information regarding diagnosis, treatment options, nutrition guidelines, side-effect management and other methods designed to enrich life with CML. Leading CML specialists, Social Workers, and CML advocates including National CML Society representatives and special guest and fellow CML’er, Kareem Abdul-Jabbar, are panelists for this exciting event.The first stop in this year’s schedule found ourselves in Chicago, Illinois. Our very own NCMLS representatives and Chicago CML Connection facilitators, Jen Schwarz and Lisa Lewandowski, were hosts for the inaugural kick-off, which included medical expertise from Dr. Luke Akard, Medical Co-Director for the Indiana Blood and Marrow Transplantation Program at St. Francis Hospital and Healthcare Center in Indianapolis, IN, and Anita Vargas, MSW, LSW at the John Thuerer Cancer Center in Hackensack, NJ.Living Well with CML summits aren’t solely about taking in information. Attendees also find value in simply meeting others who share the same experiences. Speaking about the event, NCMLS representative, Jen Schwarz shares, “The Living Well with CML event was fabulous. It was such an amazing feeling to be in a room full of people that you can speak completely freely with about this disease.” A disease that isn’t discriminatory, CML affects a variety of age groups. “We had young and old there. I met a guy that was diagnosed in 2005. He was 25 at the time. And then we had people in their 60′s.”Living Well with CML Chicago presented lots of useful information, including topics about the necessity and significance of medication adherence. Luke Akard, MD, covered this topic extensively says Schwarz, “Dr. Akard mostly talked about how important adherence is. Always take your meds just as the doctor has told you. It is very important to your response of your medicine. He said if you miss 20% of your doses in a one month period, your response to that medicine declines.”Additionally, CML’ers have the special benefit of learning insights from licensed oncology social workers like Anita Vargas, LMSW. “Anita, the social worker, was wonderful. I found myself tearing up a few times. Her message throughout was to keep living your life. That your life is different now, but that you have to keep living. Do the things that you enjoy. And with the people that you love,” shares Schwarz.This year, Living Well with CML has also partnered with CML advocate and NBA Hall of Famer, Kareem Abdul-Jabbar. As imagined, his presence as this event was larger than life for Schwarz and other attendees, ”It was so awesome to sit with Kareem and hear is story.”Summarizing the Living Well with CML event in Chicago, Schwarz states, “The Westin in Chicago was fabulous. I hope that I can do another event like this again. I feel very blessed.”Indeed.Thank you to all who came out and shared this special day with us! We hope that we can continue to help you navigate your way through your CML journey and are grateful for the opportunity to get to know you. We look forward to sharing more moments like these moments with you in the future.For a detailed list of Living Well with CML events, including locations, schedule and designated experts, click Living Well with CML 2013. Once you’re at the link, you’ll be able to learn more about the event, register, and secure a seat for you and a family member, friend or caregiver. We hope to see you in 2013!If you have been diagnosed with CML or know of someone who has and is looking for support, please reach out to me at jschwarz@nationalcmlsociety.org. Or you can visit the website at www.nationalcmlsociety.org .