One sentiment I shared with family very early in my cancer diagnosis is when this is all said and done, I wanted to make a difference in the lives of others. This blog has given me a head start on that, but there is so many other ways to help people than just chronicling one patient’s ups and downs.
I got the chance to start down that path on Saturday, speaking at the Melanoma Research Foundation’s “Navigating Malignant Melanoma” conference in Miami. The MRF supports melanoma research, educates patients and physicians, and advocates for the melanoma community. Their website – www.melanoma.org – contains a wealth of knowledge on melanoma and resources for support and research. They are one of several organizations that are committed to battling melanoma alongside us patients. And they are doing another symposium in New York City on Saturday, February 8 – I highly suggest you make the trip up the Turnpike if you or a loved one has melanoma to learn about the breakthroughs being made in clinical trials and treatments.
The forum itself was small – they were piloting this approach for conferences in NYC and San Francisco – which turned out to be a good way to lead my first melanoma discussion. I don’t have much of a public speaking resume, mostly hour-long work presentations. Opening up about my illness was certainly going to be a change of pace, so I am a little glad the room wasn’t filled. Plus, the first of the two speaking parts was strictly with other patients and caregivers, which meant my story became more of a talk of treatments and clinical trial experiences. I could really relate to my audience (and they to me), and that connection is something I hope will seamlessly (yea right) transfer from blogging to speaking engagements.
The morning talk went well; following the presentations by a top melanoma doctor and clinical trial nurse meant that I had a lot less initials after my name, not to mention medical expertise. They presented information on the latest in melanoma research and how to understand and manage your treatment options. My contribution was partially sharing experiences, but also facilitating the conversation around how the science that Dr. Gonzalez and RN Rosenthal presented really impacts patients (and caregivers). I was the walking, talking, slightly stuttering, real-life example.
That afternoon, they brought our group together with a second group comprised of doctors and nurses to have a panel talk on what patients say/what doctors hear and vice versa. I sat next to Dr. Rene Gonzalez and Dr. Jeff Weber, my oncologist at Moffitt. They are two of the leading melanoma research doctors in the WORLD… and then there was Patient #1, armed with nothing but a few well-worded blog posts and some scars. It was like hosting a panel with Einstein, Edison, and Curly.
My contributions to the discussion were far less intelligent and scientific as my “esteemed colleagues” – really, it’s hard to make quantitative points discussing what patients actually hear when told “You are BRAF negative” or “Here are the clinical trials options”. When you are batting behind two heavyweights in the field, candor and brevity tend to be your friends – and the last one is not really my forte. Learning to speak so the audience takes away something is certainly an art, one that I am hoping to improve so that my experience can help a wider audience. I just wish those talks occasionally came with a Backspace key and word count.
Maybe the most important takeaway from the entire day was this: there are a lot of people out there trying to help cancer patients, to help melanoma patients. Take the time to find them. The avalanche of information that comes with a cancer diagnosis is extremely difficult to process and digest. Employ family and friends to find the websites and the organizations that are dedicated to cancer, and particularly your cancer. For melanoma, there are a lot of resources to sift through, but it’s worth it; I wish I had done a better job of finding the melanoma advocates and support organizations in the early stages. Research the websites below. Find the experts in the field and get an appointment with one (or more) of them. Call Shelby from the MRF on her cell phone, the number is… OK, OK don’t do that. But every organization has a hotline and/or an email to put you in touch with someone.
If you can get a chance to hear someone of the caliber of Dr. Weber or Dr. Gonzalez (and RN Katherine Rosenthal, too!!!) talk about advances in melanoma treatments, please take it. I have two full pages of notes from the conference, and I thought I was pretty well-read on this subject. The science might not always be easy to understand, but the takeaways will be extremely valuable. If you could take batting practice tips from Chase Utley or guitar lessons from Bruce Springsteen, you would do it in a heartbeat. Apply the same logic to “potentially terminal illness” as you would to sports and recreation. After all, hitting .300 or selling out the Spectrum is nice, but beating cancer would rank pretty high on the accomplishment list, too.
AIM at Melanoma: www.aimatmelanoma.org
T.J. Sharpe shares his fight against Stage 4 Melanoma in the Patient #1 blog. Read more »