Tales of Triumph

Over the past 3+ years, I’ve met so many incredible people touched by cancer.  I’ve met both newly diagnosed cancer patients and 20+ year survivors.  I’ve met caregivers and concerned family members & friends trying to advocate for a loved one.  I’ve met doctors and surgeons and researchers too.  Many of them have asked to guest blog on my site…. but they do not write about resources, they instead have a story to share.

To help them share their stories or tales of triumph, I’m launching this new section on CancerHAWK called “Tale of Triumph” where you can read about their experiences and their perspectives and their journeys.  I hope these posts inspire you the way they have inspired me.

 

*** This video was created by mesothelioma survivor Heather Von St. James.  The Mesothelioma Cancer Alliance is a fantastic resource to help anyone touched by mesothelioma.

 

 
 

*** This post below was written by Eva Grayzel, tongue cancer survivor & founder of SixStepScreening.org, a grassroots oral cancer awareness campaign. 

What Mom puts herself before her kids?  I had the sore on my tongue for a month.  Everything else seemed more important. Finally, I got to an oral surgeon who did an incisional biopsy.  The results were ‘Hyperkeratosis”, which I was told was a hardening of the skin, like a callous.  Nothing to be concerned about.Cohen Family 5x7H2

I had no symptoms for 2 years.  Early stage oral cancer is often asymptomatic.  You don’t feel it, but it can be detected by the trained eye of a dental professional.

The sore returned. I was bounced back and forth between my dentist and oral surgeon for gels, rinses, shaving of the teeth to reduce irritation, even a  plastic retainer that covered my teeth to prevent irritation to the area during the night.

“If it doesn’t improve, come back,”  I was continually being told.  Why was I being asked to determine whether my condition was improving?  Living with it everyday, the changes were subtle.  If my dentist or oral surgeon mentioned oral cancer as a possibility, I think I would have been more proactive as the sore continued becoming more painful.

After 8 months, I developed an unbearable earache, and was treated for water on my eardrum. I was waking up throughout the nights in tears.

I returned to the oral surgeon desperate for answers. “Your tongue is small and we don’t want to cut it up unless we have to, but at this point, I guess the next step would be another biopsy.”  For the first time, after 9 months of treatment at his office, I thought I should look elsewhere for answers.

A family friend told me to get to a medical center and recommended Dr. Mark Urken, chief of Head and Neck Surgery at Mt Sinai Hospital in NYC.  I took the bus into NYC that day not having an inkling that the gross sore on my tongue was cancer.  He felt the enlarged lymph node in my neck, looked at the classic ulceration on my lateral tongue, and after doing a minimally invasive procedure, told me I was in an advanced stage of oral cancer.

I went into shock.  I ate well, exercised, had no risk factors commonly associated with oral cancer.  My surgery included a radical neck dissection and partial reconstruction of my tongue.   I was given a 15% chance of survival.

During radiation, when I was teetering on the tightrope between life and death, I thought good and hard about how I would be remembered by my young children.  I would not be remembered for sitting through soccer games, but for how I made a difference in other peoples lives.  So, when I got a second chance at life, I got to work. First, I started at home with my own children.

How will my children know what I do to make a difference, unless I tell them?  We started a tradition with our charity box.  Every day we would put money in and say how we brought a little light into someones life, or how someone brought light into our life.  We are all role models, performing good deeds every day, but often without a special way to share our kind acts with those we love.  The charity box became an opportunity to instill my values of giving charity as well as reaching out to others.  We start every family holiday with the passing around the charity box and saying what makes us grateful.

Another family tradition I initiated was blessing my children every night before their goodnight kiss.  I wanted them to know how special they were on a regular basis.  Why is criticizing so easy and praising those we love most in the world so difficult?  Bedtime took 2 minutes instead of two hours because my children felt everything they needed to fall asleep:  Praised, loved, and safe.  One day, my son asked me who blesses me.  I told him the truth: no one.  He put his hands on my head that night and blessed me.  That gesture made a lifelong imprint on my soul.  It doesn’t matter what age you attain, the education you acquire, or the profession you practice, you can bless and enrich another persons life.

To prevent this disease from happening to others, I started SixStepScreening.org to raise awareness not only for the general public but for dental professionals.  Also, I wrote two books for children to help them understand a cancer diagnosis in the family. Visit Talk4Hope.com for a free download of sample pages.

Many times I asked myself, “Why me?”  A friend gave me an answer:  “Why NOT you?”  Now, I tell my story professionally.  It is more than a mission to educate, but a tribute to those that came before me, and an obligation to those that will follow.  It’s been thirteen years since my diagnosis.

Eva Grayzel is Motivational Speaker, Interactive Performance Artist, and Author.  She founded SixStepScreening.org, a grassroots oral cancer awareness
campaign demonstrating the Six-Step oral cancer screening.  Also, Eva is the author of ‘Mr. C Plays Hide and Seek,’ and ‘Mr. C The Globetrotter’ to be released in May 2013.  Visit EvaGrayzel.com.

Thank you Eva for all you are doing to raise awareness of oral cancers.  Early detection saves lives! xo

 

 

*** This post below was written by Cameron Von St. James, caregiver extraordinaire & blogger for the Mesothelioma Cancer Alliance Blog.  

How Cancer Affected My Family 

Many times recently, my wife has stated that only I know what I went through when she was diagnosed with mesothelioma.  I have not shared my experience as a caregiver very much since her diagnosis.  I am taking this

time now to tell my experience in hopes it can shed some light for others on how this disease can affect families.

Several weeks after my wife Heather gave birth to our daughter, Lily, we received news from the doctors that my wife had mesothelioma.  This completely shattered our newfound happiness at being parents to our amazing infant daughter.  We were caught off-guard and were stunned.  Initially, I did not respond well to the news.  I became angry and I often lashed out at people using foul language.  My temper certainly got the best of me a few different times shortly after her diagnosis.

I soon realized that I needed to quickly pull myself together and be the type of husband and father my family could depend on.  This was going to be a trial of a lifetime for my family, and Heather and Lily needed me to be there for them.  I began coping better and I became determined to do whatever was necessary to help my wife through this disease while also being a loving dad to Lily and providing for my family at the same time.

After the diagnosis, my list of things to do grew to an overwhelming list.  In addition to working, I had to transport my daughter to her wellness check-ups, take my wife back and forth to doctor’s appointments and take care of everyday household chores and meal preparations.  We were very blessed to have a large amount of help from caring neighbors, co-workers and friends.  I really do not know what I would have done without these caring people pitching in to help us out with small chores, carpooling and meals.  I will forever be grateful to them.

There was a two-month time period where my wife went to stay with her parents and Lily in South Dakota.  She was recovering from a surgery she had undergone in Boston.  She was also in resting and getting ready for another session of mesothelioma treatment: radiation and chemotherapy.  This was indescribably difficult for me because I had to stay home and keep working so I could keep my job and pay the family bills.  I did get to visit them one time and I was so grateful for that opportunity, but I missed them like crazy while we were separated for several weeks at a time.

Looking back now, I know we could not have made it through the entire ordeal without the loving support of people who rallied around us.  We will always be grateful to family members and friends who helped out in any way possible.  We were faced with a tough diagnosis and we did everything we could to make sure my wife made it through it safely.  Through all of our struggles, Heather is still here and still healthy over six years later.  I hope that our story can be a source of hope and help to those currently battling cancer.

 

Thank you Cameron for all you are doing to make a difference for those lives touched by cancer! xo

 

 

3 comments

  1. Robyn,
    It takes a special person to do what you are doing. Your dedication to helping patients is beyond inspirational. The world needs more people like you and words of praise are inadequate to express the tremendous good you are doing in reaching out to support those in need of comfort.
    I’m a retired CBS News journalist and following my own battle with cancer my surgeon and I joined hands in writing a book to do just what you are doing. To lend support and encouragement to men diagnosed with prostate cancer and their families. Our work was sited by Weil Cornell Medical School as the most compelling book on the subject for the public at large. We wish more patients would see it because we believe we can save so many more lives. It’s on Amazon and titled: prostate cancer survivors speak their minds. You may want to check it out. You can see the site at prostatecancersurvivorspeak.com/ You are a courageous woman and we hope you will continue doing your extraordinary work. We salute you. Norman Morris and Dr. Arthur Burnett, the Johns Hopkins Medical Institute.

    • Robyn says:

      Hi Norman,
      Thank you so very much for your comments-I’m speechless (which doesn’t happen often ;-)) and very humbled. I will take a look at your site and see what I can do to help get the word out. I will email you directly. Kudos to you for the work you are doing to make a difference in so many people’s lives…. Best, Robyn

  2. Ezekiel Gullotta says:

    Most people who develop mesothelioma have worked in jobs where they inhaled or ingested asbestos fibers, or were exposed to airborne asbestos dust and fibers in other ways. It has also been suggested that washing clothes of a family member who worked with asbestos increases their risk for developing mesothelioma.*-,.

    Till next time
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