Coming Back Around
In 2008 at age 55 I was diagnosed with stage IV Prostate Cancer, heart attack in 2010, bladder cancer diagnosed in 2015 stage 0, AFIB, A-flutter, cardioversions, ablations, P.A.D. with many stents, and more. Thirteen years later I am still standing. Medical folks call me a miracle, but I call it pig-headed — too stubborn to give up.
Begs to ask the question of why am I still here? Secondly, now what?
Trying to make sense of it all
Early on there was a lot of trying to figure out why me? I was mad, depressed. How did I get this disease? Will I be around two years from now? Do I have any control over the outcome?
It did not take too long for me to realize I was no more than a rudderless ship adrift in storm waters. Blowing here and there, up, and down, around, and around. Just an unwilling participant in a game much bigger than me.
I like to use ping pong as an analogy. Just a ping pong ball getting smacked back and forth with no control of the next hit.
Coming back to sanity
I stand convinced that the best thing I did to gain some clarity on cancer and the road now being traveled was to learn all I could about the disease.
For me, the worst thing was the lack of a solid plan and a way to gain some control over this mystery disease. I could not see it, did not really feel it, yet here are a bunch of folks telling me I need to cut things out, take a bunch of pills, get infusions. I had little to go on but faith that they had my best interest at heart.
Then I read, talked, researched, and began to understand what prostate cancer was and the way to manage it. What course of action to take, and what was coming down the road?
Hey, I could converse with the "whitecoats" and finally begin to understand them. Once they knew I was interested in what they did the flood gates opened, and a lot of healthy discussions ensued. Cool! Some sanity!
Learning from fellow patients
I also learned that some of my best sources of information came from fellow patients, those who had already gone through what I was heading into. I joined many groups online, then was recruited to be a Patient Ambassador and share my story.
Unbelievably, even got some pocket change for the guitar fund (basement music star). I have traveled nationally and spoken to a lot of people. The largest group was 1500 in Vegas for a national convention.
Today I am a Patient Ambassador for two companies, a national speaker telling my story of living with cancer, an online moderator for several cancer groups, patient advisor for a large Indiana teaching hospital, and a reliable resource to my friends who know I am willing to talk about my disease.
Being a Patient Ambassador
Every time someone from my audience takes time to come up and thank me for my openness and willingness to honestly share my journey with this horrible disease (lucky me with two primary cancers: prostate and bladder).
I feel blessed to be able to do something good with this junk I carry around. I have seen many a tear shed as it seems that, unfortunately, there is an endless supply of people like me fighting cancer and another group of friends and families that are trying to understand what a cancer patient is going through and how they can help.
Learning that helping someone else helps you too!
If you have been able to get your head back up and are walking with this disease, please consider helping the new folks make sense of what is happening to them. Give a caring heart and listen to what they are experiencing.
Together we can make a difference to someone who is heading to where we have already been.
How long did you wait before telling others about your diagnosis?