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Heroes

14 Jan

This year has started out like a kick in the stomach as recent deaths of David Bowie, Alan Rickman and Lemmy from Motorhead have reminded that we still have a long way to go in the fight against cancer. These losses come along with some notable fights against lymphoma in the world of sports especially Andrew Smith, a key player on two Butler University basketball teams that went to the NCAA national title game, who died after a lengthy battle with non-Hodgkin’s lymphoma. He was 25.

As someone who survived a similar form of cancer it is hard to reconcile and understand why some of us survive and some do not. Why a young man who was an excellent health and a top flight athlete did not respond to treatment while a regular Joe Schmo in his 40s like me is still standing six year later is confusing. It can also make you feel a little guilty.

The only way I know to fight these feelings is to keep busy. Some days I feel like have been blessed with a second chance and I don’t want to waste it. The loss of David Bowie was especially sad but also an affirmation to get back out there and create and do things.    Bowie had such an epic life because he was always doing shit. I have a hard time imagining him sitting around playing video games or binge watching some TV show. He had shit to do. My son asked what the big deal was about Bowie, I told him whatever you do, be interested and interesting. Even when I assume that Bowie knew he was dying, he rushed out a final record instead of feeling sorry for himself. He had shit to do and things to say.

Not all of us are as talented as Bowie, Alan Rickman or Lemmy but we all have things to say and do. It is just a matter of getting out there and doing it.

Heroes
I, I will be king
And you, you will be queen
Though nothing, will drive them away
We can beat them, just for one day
We can be heroes, just for one day

And you, you can be mean
And I, I’ll drink all the time
‘Cause we’re lovers, and that is a fact
Yes we’re lovers, and that is that

Though nothing, will keep us together
We could steal time, just for one day
We can be heroes, forever and ever
What’d you say?

I, I wish you could swim
Like the dolphins, like dolphins can swim
Though nothing, nothing will keep us together
We can beat them, forever and ever
Oh we can be heroes, just for one day

I, I will be king
And you, you will be queen
Though nothing will drive them away
We can be heroes, just for one day
We can be us, just for one day

I, I can remember (I remember)
Standing, by the wall (by the wall)
And the guns, shot above our heads (over our heads)
And we kissed, as though nothing could fall (nothing could fall)
And the shame, was on the other side
Oh we can beat them, forever and ever
Then we could be heroes, just for one day

We can be heroes
We can be heroes
We can be heroes
Just for one day
We can be heroes

We’re nothing, and nothing will help us
Maybe we’re lying, then you better not stay
But we could be safer, just for one day
Oh-oh-oh-ohh, oh-oh-oh-ohh, just for one day

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Blogging Your Cancer

29 Jan

An interesting column by Bill Saporito in last week’s edition of Time magazine addressed the growing phenomenon of blogging about cancer. Former New York Times editor Bill Keller and Emma Keller of the U.K.’s Guardian both wrote columns questioning the necessity and taste of patients blogging about their cancer and their treatments. Both columns made valid points but set off a debate about over sharing and fighting cancer with dignity.

When I was receiving treatment for non-Hodgkin’s lymphoma, I felt no need to share what I was going through with the public. Although I wish I would have had a Facebook account at the time so I would have been able to update family and friends on my treatments without having to make multiple phone calls. How primitive.

Since the publication of The Year My Dad Went Bald, I have found myself in the position of sharing my experiences with people I’ve never met before on a regular basis.  I didn’t realize it at the time, but when I sat down to write and illustrate the book it gave me a unique perspective to happened to me and how I would never look at life the same again.  Initially, I wanted nothing to do with any sort of self-help encounters or discussions groups. Since my recovery, I have found myself speaking and participating in these encounters that I was so desperate to avoid. What changed?

I never wanted to be the “cancer guy” but like it or not I have become a voice, especially for fathers, for those who are going through this ordeal. I can only hope that my story and recovery has given comfort and hope.

I have been fortunate that companies like Genentech and the Ohio State University to be given me the opportunity to share my experiences with researchers, and future doctors. Everybody handles adversity in different ways; The Year My Dad Went Bald has changed the course of my life and made me a different person. Hopefully better.

Robert Kessler who writes for Gawker has started to blog about his diagnosis of non-Hodgkin’s lymphoma.  As a well-known writer he is in a unique position to share his story with a large audience. I wish him well and look forward to his posts.

If people like the Kellers can’t handle it or find it distasteful there plenty of other websites to distract you from the realities of what some people are going through.

21st Annual Writer’s Digest Self-Published Book Awards

15 Jan

While The Year My Dad Went Bald was shut out of the 21st Annual Writer’s Digest Self-Published Book Awards, the judges still had plenty of great things to say about the book in their commentary.  After reading this, I think I need to find out who actually won, because those books must be awesome. Thanks to Writer’s Digest for recognizing excellence in the growing field of self-publishing.

JUDGE’S COMMENTARY FOR THE YEAR MY DAD WENT BALD

The illustrations are cute and quirky (even Dad barfing!), nicely complementing the text, adding humor to a serious subject.

The title will intrigue kid-readers; its seriousness makes it valuable for kids whose parents have cancer.  The boy protagonist/dad cancer victim widens the audience since studies claim boys won’t read books about girls, but girls will read about either sex.

The story is funny (beginning with the subtitle “coping with a cold head” through the reactions of the protagonist/dad (particularly nice: who made Dad’s hair go gray; the champagne scene); humor is vital in such a book.  The boy’s voice is natural and perfectly kid-like, drawing readers in and making his plight understandable.  The details about the diagnosis are presented in easy-to-understand terms; the protagonist’s confusion and worries are things kids in similar situations face. Particularly nice: the added responsibilities for him and Mom.

The hockey tie-in is unique.  The explanations of lymphoma and chemotherapy are good; while sidebars, they are presented in a way that keeps the book sounding story-like, not a lecture; wonderfully done.  The list of wildly successful people who’ve had lymphoma is perfect, as is the list of resources.  Wonderful is the bit about “the new normal.”  A fantastic book for kids knowing someone with cancer, yet lively enough to appeal as an “ordinary” story, too

Books are evaluated on a scale of 1 to 5, with 1 meaning “needs improvement” and 5 meaning “outstanding”.

Structure and Organization: 5

Grammar: 5

Production Quality and Cover Design: 5

Plot (if applicable): 5

Character Development (if applicable): 5

Camp Kesem in my backyard

2 Aug

Just like being back at camp, making s’mores in the backyard. We were honored to host a thank you/reunion party for the fantastic counselors of Camp Kesem OSU last week. Camp Kesem is a student run, volunteer organization which provides a summer camps experience to kids whose parents are fighting cancer. We are grateful for their enthusiasm and dedication to this program.2013-07-27 19.09.28 2013-07-27 19.09.43

 

Summer Fun

25 Jun

999336_479540892120993_1695275706_nDanny just returned from another fun-filled week at Camp Kesem. I can’t thank the Ohio State students involved enough for their commitment to this program. Camp Kesem is an overnight camp for children who have a parent who has battled some sort of cancer. It is completely run and funded by OSU students who work incredibly hard to raise funds in order to be able to offer the camp FREE of charge.

With camps at run by college students across the country, the OSU chapter is quickly growing into one of the biggest.

In just its second year, the Camp Kesem OSU was able to offer spots to 65 campers, up from 21 in its inaugural year

“As the Program Director for CKOSU”, said Lauren “Mazipan” Ellis, “I could not possibly be more proud of the magical experience my students have created for the children of Ohio! Through their hard work and relentless pursuit to exceed goals set for them, they have surpassed my expectations time and time again and this is clearly evident in the passion they show for the campers they serve and the smiles they create.”

The funds were raised in just about every way imaginable from silent auctions, pub-crawls and the Make the Magic dinner event. Danny already can’t wait for next year.

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RELAY FOR LIFE THIS WEEKEND

Also this week, I will be helping the Columbus Tri-Village Relay for Life kick off their 2013 event. The Relay starts at 6 pm at Jones Middle School in Upper Arlington. I will be on hand to make some opening remarks at 6:30 and help lead the survivors and caregivers lap. Although it is a busy weekend in Columbus (isn’t it always!) there is still time to get involved and help raise funds to fight cancer. It is a great honor to be a part of their efforts. For more info check out their website at http://relay.acsevents.org/site/TR?fr_id=49606&pg=entry

Havens of Hope

21 May

Book lovers and Cancer haters, if you missed last month’s Evening with an Author event at the JamesCare Center, Nicole Kraft and I will be featured speakers at Havens of Hope Cancer Foundation this Thursday (6pm). We will be discussing the creation of “The Year My Dad Went Bald” and sharing stories. The event is free but registration is required. For more info please call/email Haven of Hope at 614-383-6256 or info@hohcf.org to register.
The Year My Dad Went Bald

No Sophomore Slump

17 May

I was thrilled today to mail off my annual donation to both the Leukemia and Lymphoma Society  and the NHL’s Hockey Fights Cancer. It is always gratifying to support these two organizations that provide such excellent services and support to patients and their families. When I first created “The Year My Dad Went Bald” I wanted to be able to give back to those who helped me in my fight against cancer. Since I self-published the book, I am able to share a portion of my sales with these organizations. I am especially thrilled since the donations this year were three times the amount of last years donations, meaning we had a really good year getting The Year My Dad Went Bald out to the people who it might help. I grateful to all those who played at part in this very successful year, including the James Cancer Center at Ohio State, the Central Chapter Ohio of the LLS, Camp Kesem and Genentech, Inc. which has been a great supporter of the book.