Be the Boss Over Cancer

I am writing because I really have reached to total level on frustration. I was diagnosed with terminal cancer on December 12, 1990. I was only three months shy of my 17th birthday and was a star athlete in basketball and baseball where I was already being recruited after my sophomore year.

I am now 37 and live on Long Island. I suffer from Crohn’s disease, Lymphodema and Hemochromotosis as a result of the treatment. In 2008 I was forced to go on disability since I no longer could consistently attend work. I had spent the previous 10 years as a researcher for ESPN, a job and a company that I loved dearly and who treated me very well.  As you can imagine, being on disability in today’s economy is rough, however the good Lord has blessed me by giving me the perseverance to survive and the desire to reach and help others with my experiences.

My story is powerful, and one that I believe can touch others and give hope to many who need hope and suffering with similar experiences. My journey is not over, and I believe I have a responsibility to encourage others and speak of the power of prayer, love and perseverance. Hope is a powerful emotion, and just a little can turn a life around.

What I am looking for is a chance to be a spokesperson for organizations that wish to raise money for cancer research/survivors/patients/families. I am a very good public speaker and know that if I was put in front of a business or individuals with the premise being fund raising, I would rake in the dollars. 

Sometimes I feel like a total failure, because surviving cancer is more of a scarlet letter than something to be proud of. Because of this disease, I can no longer support my family, I have mountains of medical debt, and disability is a joke and soon might be eliminated all together. Now I'm left to suffer because I survived. The treatment permanently affected me.

I have a powerful story. I can be a very strong asset and I can DEFINITELY help those who need hope and who need to see someone who suffered through just about everything a cancer patient could, and yet still survives. What I am looking to do is to be able to visit hospitals, organizations, anything, that can hear me and see me and be motivated to go out and donate time, money and perhaps their story to help others who are suffering.

Tell me, what is someone in my position supposed to do? I can't LEGALLY work while on disability, without them going through an arduous process that would then subtract or possibly eliminate the minuscule amount that disability pays, while having to work at something that I can't possibly commit to. 

Why can't someone with my story catch a break within the cancer community? How do I make myself more known? All I have is my story and experiences which certainly make me an "expert" on the topic, so if someone is looking for that, I should automatically be at the top of their list. Problem is I have no clue what to do. How do I do this?

I started a website in April www.cancersurvivorfund.com and am trying to start a for profit organization. There are way too many red flags with non-profits that make it impossible for me to start one. However, since the site has been up, not one person (if anyone has seen it) has donated yet because they can't get tax breaks, and the entire circulation of a parchment like this is very confusing.

Bottom line with me is I have a pure heart to try and make a difference for people who need help like I do. Problem is, I have no idea how to make this happen, and no matter how hard I try, I just can't seem to find people that can lead me to the right avenues to get this started and get me in front of people who want to donate and let them hear my story.

4 Comments

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  • Alice McKenney

    Alice McKenney on Sep 1, 2011

    Cancer and Careers Staff Comment:

    Hi Mark,

    I will defer to our career coaches on many of your questions, but I did want to share a few avenues you might want to check out regarding ways to be a spokesperson and share your story.  One we hear of survivors getting involved with on occasion is for pharmaceutical companies which allows them to share their stories with other survivors, doctors, etc.  If that interests you you might want to explore this avenue.

    Another avenue you might want to look into are public speaker's bureaus.  These are lists of people willing to do public speaking for events with fees listed.  A quick Google search should return some options for you.

    Best,

    Alice

  • Kathy Flora

    Kathy Flora on Sep 2, 2011

    Career Coach Comment:

    Mark,  Hi!   I am one of the career coaches for Cancerandcareers.org.   I am impressed with your passion and your resiliency!  What a story you must have to tell. I have several friends who have made it their passion to volunteer in cancer support organizations, and frequently they are asked to speak at rallies, events or at conferences.   From what I can tell of their experience, and from my experience coaching others in their careers, having a hook, or a special "something" to talk about is a good door opener.    I recommend crafting what we call an elevator speech...30 seconds to 2 minutes that describe who you are, and what you have to offer. Include your speaking ability and topics, but also any support you can give to the organization through your volunteering with "feet on the ground".   Then, approach local not-for-profits, such as the American Cancer Society,local chapters of the Susan G. Komen foundation, Gilda's Clubs etc.  Speak to the director of volunteer services and ask what they need from volunteers.  Become a known entity through service, then approach them with your ideas for public speaking... this may be a way to break in.  One last thought I have is to approach local cancer treatment centers and oncology offices to see if they sponsor cancer treatment support groups.   Approach them with your ideas, and get to know the people who run these groups.  Perhaps you can start small by partnering with them on a session or two for survivors.   You are limited only by your creativity and your approach...but understand that people must know you, trust you, and be comfortable with your message before they will ask you to speak to their constituencies.   A little effort making that happen may just be the door opener you need.  My best wishes on this journey!  Kathy

  • Judi Swedek

    Judi Swedek on Sep 3, 2011

    Career Coach Comment:

    Dear Mark,

    Thank you for sharing your story and your passion. It's evident that you truly have a gift and message to share with others.

    Kathy shared much of the advice I would have given, so I won't repeat the same. A couple of other thoughts...know that attracting people to your website is not easy. There are so many sites and stories out there, you'll need to think about how you want to differentiate yourself and your messaging. I was thinking that you may want to start a blog as you share your story and experiences. The way you write, I would think your passion would certainly shine through. There are a number of different blogging sites like blogspot.com or tumblr.com. You'd be amazed at how people will begin to find you. And once you have developed some speaking opportunities you can use your blog to advertise those and bring more people to your message.

    I wish you much success in your journey...focus on what you can bring to others and the doors will open. Judi

  • Margot Larson

    Margot Larson on Sep 7, 2011

    Career Coach Comment:

    Mark-


    In your opening introduction you indicate that you were diagnosed with “terminal” cancer in 1990. Obviously the diagnosis was terribly wrong, or you have done an outstanding job of beating the odds. Congratulations!


    I know it can be frustrating. And I can only imagine what you have been through over the past 20 years. I have only been going through this for 4 years and yet I feel lucky to have those 4 years. Many of my fellow lung cancer patients have not made it this far.


    I am also on SS disability and understand the restrictions about earning restrictions. Interestingly, the restrictions play out differently if you are self employed.


    Mark, if you are in CT (I am familiar with ESPN’s Bristol location) , I would like your permission to introduce you to the Cancer Support Community of Southern CT who are in the process of raising money to open a facility to provide free support and services to cancer patients and their families, and to Sailsup4cancer working out of Mystic area. Both of these organizations have a 501.3c designation and while young in their development, are trying to grow. Your interest and your passion would be very helpful to them. Check out their websites http://www.cancersupportcommunitysct.org/ and http://su4c.org/


    I agree with my fellow career coaches, look to some of the national organizations to become a spokesperson. Also, meet with the Communications, PR and Social Workers at your cancer center. For instance, I have been featured in Yale’s New Haven Hospital (Smilow Cancer Hospital) Annual Report and have participated on a panel for a Lung Cancer Symposium. Be sure that the head of your cancer center knows of your interest in being a spokesperson. Again, if you are in CT, the Goodman speakers bureau is a good source. Be sure to have an outline for a couple of presentations. www.goodmanspeakersbureau.com. Consider joining the local speakers associations. There is one in CT and the New England one usually meets in MA and is a chapter of the National Speakers Association. Find a friend who would be willing to pay for your membership.


    I came across this website this morning, sent by a fellow cancer survivor. We both found it to be very meaningful. Maybe it will help you too.


    Permission to Simply Be
    Working through Transitions
    During the pause between achievements, many people begin to question what their life is about.


    The elation we feel when we have learned an important lesson, achieved a goal, or had a big breakthrough can sometimes be met with a period of downtime afterward. During this period of transition, we may feel unsure and not know where to turn next. Many people, during the pause between achievements, begin to wonder what their life is about. These feelings are common and strike everyone from time to time. Human beings are active creatures—we feel best when we are working on a project or vigorously pursuing a goal. But there is nothing inherently wrong with spending a day, a week, or even a month simply existing and not having a plan. Just be. It won’t be long before you embark upon your next voyage of growth and discovery.


    The quiet lull into we which we fall between ideas, projects, and goals can make life seem empty. After accomplishing one objective, you may want to move immediately on to the next. However, when your next step is unclear, you may feel frustrated, disconnected, or even a mild depression. You may even perceive your lack of forward momentum as an indicator of imminent stagnation. To calm these distressing thoughts, try to accept that if your intent is personal growth, you will continue to grow as an individual whether striving for a specific objective or not. Spending time immersed in life’s rigors and pleasures can be a cathartic experience that gives you the time you need to think about what you have recently gone through and leisurely contemplate what you wish to do next. You may also find that in simply being and going through the motions of everyday life, you reconnect with your priorities in a very organic, unforced way.


    The mindful transitional pause can take many forms. For some, it can be a period of reflection that helps them understand how their life has unfolded. For others, it can be a period of adjustment, where new values based on recent changes are integrated into daily life. Just because you’re not headed swiftly to a final destination doesn’t mean you should assume that you have lost your drive. The stage between journeys can become a wonderful period of relaxation that prepares you for the path that will soon be revealed to you.
    ________________________________________


    Mark, keep in touch. We are here to provide support and guidance. As you have done so many times through your journey, shift your focus to success and the good things you have accomplished. Be sure to surround yourself with positive-minded people who have experienced similar adversity. We fuel each other.


    Margot

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