Living Well With CML
An Educational Program for Patients and Caregivers
Hosted by the National CML Society in conjunction with Novartis Oncology
Living with CML, (Chronic Myeloid Leukemia) for ten years, today I was lucky enough to share a few hours with real people, good people, who live with CML.
What a difference it makes to look into the eyes of someone who shares a rare disease. Having communicated on social media with questions and concerns doesn’t compare with actually talking face to face.
It wasn’t a packed room because CML is a rare form of leukemia. I didn’t get to speak to everyone, but the couple and gentleman at my table were delightful. The wife was the caregiver and shared her feelings about caring for her husband, and her husband talked about his concerns. The gentleman who sat with us killed two birds with one stone – he conducted business the day before and when he found out there was a CML conference, and living with CML, he decided to attend.
Leading CML Specialists, a Social Worker, The National CML Society Advocates, and Kareem Abdul-Jabbar made up the panel of experts.
The information was familiar to me, as I’ve been living with CML for ten years; however, I did learn to ask if my blood tests were on the International Scale. I had never heard of this scale of comparison, and will be sure to ask my oncologist at my next visit.
Surprised that our special guest, Kareem Abdul-Jabbar, who suffers from CML, took time from his busy schedule to appear was a treat. He shared his story with us, and hearing it live certainly made an impact. Earning my full attention was when Kareem mentioned how he dealt with one of the side effects of his oral chemotherapy medication – cramps – especially hand cramps. I suffer from cramps every single day, so when he said he drank tonic water with quinine, I wrote it down immediately.
On the way home, I stopped at the first store I passed and picked up four 1 Liter bottles. I’m working on the first bottle and hoping for miracle results. Driving home cramped up my hands, so I had to wait a couple of hours for them to subside enough to write this blog. Thanks to Kareem, my new choice of beverage is tonic water with quinine. I’ll report the results in my next blog as I’m sure it isn’t an instant cure.
Besides the presentation being informative and well done, we were fed! A delicious breakfast was waiting for us, followed by a sandwich and salad buffet being served by The Renaissance Las Vegas. I enjoyed drinking hot tea during the entire presentation and a delicious lunch.
Networking took place, and it would be nice to hear from others – maybe some will drop by my blog and say hello, or drop me an e-mail.
Thank you to The NCMLS and to our special guest, Kareem Abdul-Jabbar, for a lovely and informative conference.
As always, thanks for reading!