The following quote arrived in my inbox today and it made me think, again, of Susan Steel.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of those depths.”
Elizabeth Kubler Ross
We’ve been thinking about her a lot over the last few days, since hearing the news she passed away. For those that did know her, she was a long time Melanoma survivor who started, among her other accomplishments, the Skin of Steel foundation. She was not only an intimidatingly smart and perceptive woman, she had a huge heart for us sick melanoma folk, a real spirit for family (I could totally relate to her desire to see her kids grow up and fight like a mofo to try to make that happen), and an awesome sense of humor. What’s more Susan was a tough as nails customer when need be…10 years ago when she got diagnosed there was almost no hope for us, yet she survived and helped a ton of people in the process. You can read more about her compelling story here.
Besides saving my life with her initial advise after I got my Stage IV Melanoma diagnosis, Susan pointed me towards a number of things:
- When you get a tough diagnosis go to the experts. For instance, if you have melanoma find the melanoma docs. A general oncologist might see 1 or 2 melanoma patients per year. A guy like Omid Hamid in LA at the Angeles Clinic sees a couple of hundred, besides having a vested interest and passion for fighting this specific malady. It stands to reason that the quality of care (as expressed by knowledge, intent, access to the latest treatments/ideas/approaches etc) is probably going to be higher. So, if you can do it, seek out the experts. Its worth the effort.
- There is power in applied information sharing. Simultaneously amazing and tragic, the medical and pharmacological research communities do not share information very well. More than 50% of the findings gathered during clinical trials, for instance, are never publicly disclosed. Say what you want/draw your own conclusions about this and the closed nature of this system, Susan set out to do something about it. In her typically astute way, she saw a real opportunity to take a bite out of this close door problem. In particular, she saw how tissue banks where dramatically moving forward research in breast, colon, lung and other cancers, leading to new effective treatments. So she took the initiative to start SOS with the expressed purpose of doing the same for the fight against melanoma. Someday, when the cure(s) are prolific there could be one named after her.
- You can be a smart and strong, even when your sick. Susan traveled from Chicago to Colorado for the benefit dinner thrown by the Fay Family Friends (F3, https://www.facebook.com/search/top/?q=f3%20-%20fay%20family%20friends) even when sick, just weeks after getting another gamma knife treatment. She delivered a powerhouse speech and provided a huge jolt of positive energy and hope for our family just by showing up. She had an aura and power about her and was a true melanoma warrior bad ass.
Susan at Leland’s Benefit Dinner in 2012. Her beautiful daughter Sacchi pictured here too (far right)
Finally, I’m including a text from our friend Polly who, eloquent as usual, said this about Susan:
“Leland I am so sorry to hear about Susan. there is just no way for that not to be terrible and sad news. The reed I grab for is her everlasting fingerprints in so many lives and families- your own included, where she played such a pivotal role in finding a new way to be in this battle. I was part of an ad campaign once and it was called “on the shoulders of giants”, a term I don’t think was original – I’m sure it’s borrowed from something more well known then I am aware of; however, I think of that a lot —-she was a giant. Giant footprints left to follow.”
God bless Susan Steel Ishida, always.
You can find out more about Susan foundation @Skin of Steel
Funeral and some nice tributes: Susan Steel in Memoriam