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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.

Hockey Fights Hockey

2 Nov

Go ahead and make other plans for New Year’s Day, the Kraft Annual Winter Classic Party is officially off. Due to an inexplicable labor dispute between players and owners, the NHL canceled the outdoor contest, which was to feature the Detroit Red Wings and the Toronto Maple Leafs. Scheduled to be played in front of over 100,000 fans in Michigan Stadium, the game was also the highest rated televised hockey game each year.

When my Philadelphia Flyers visited Fenway Park to face the Bruins in 2010, I got the not-so bright idea to drag the TV outside to watch the game in the elements on the back deck. We invited over some of our heartiest and foolhardy friends over to join us and a tradition was born. A bon fire, street hockey tourney, hot cider and cold beer helped us brave the conditions.

Unfortunately, the NHL saw fit to shoot themselves in the foot once again and have scraped their marquee event as well as a sizable portion of their season with no labor agreement in sight.

While we had a lot of fun, we also used the party to raise awareness for cancer. When we published “The Year My Dad Went Bald,” we decided to make Hockey Fights Cancer, the charitable initiative of the National Hockey League dedicated to raising money and awareness toward cancer research as one of our benefactors from the sale proceeds of the books. Hockey has been a big part of out family life. Danny is now a squirt select players, Nicki earned her coaching certification last season and I have been a huge follower of the game since being a fan of the Broad Street Bullies in the 70’s.

Locally the Columbus Blue Jackets have been very active in the cancer community. When I was in treatment, we were invited to a special breakfast with the players, got the chance to sit in the penalty box during warm ups and the team has raised a lot of money for pediatric cancer with their Hats for Heroes program.

All of these endeavors along with other fundraising efforts like 50-50 raffles during the game for youth teams and their reading incentive program “The Book Jackets” will likely take a hit during the lockout.

A lot of this will be overlooked when fans bemoan the utter insanity of a so-called major sports league cancelling all or at least a major portion of their season for the second time in eight years.  Hopefully people will step up in other ways to help fill the void. Now I just have to figure out some other excuse to get my friends stand out in the cold and drink beer with me. Any ideas?

Turn Your Head and Cough

19 Oct

I went for my annual checkup with my general physician today and it was the non-event that I expected it to be. Besides some persistent nasal congestion, I have had very little to complain about health-wise recently. The check-ups have been reduced to a series of rote exercises; take a deep breath, turn your head and cough etc. and as well as the usual questions, sunscreen?, seat belt?, smoking?, exercise?, which I usually give them the answers they want to hear.

While this may at times seem like a pointless activity, it is still important and I am fortunate enough to have insurance that covers this annual affair. In 2008 I was extremely lucky to have had a previously scheduled physical when my first and mysterious symptoms of my non-Hodgkin’s lymphoma began to surface. Unexplainable pains in my groin and back might have gone untreated for months if not for quick action by my doctor. He didn’t know what the hell they were either so he scheduled some CAT scans after I returned a couple weeks later with the same complaints. It seemed drastic at the time, but it helped detect my cancer very early, which I believe led to a speedy recovery.

I was lucky that he also took me seriously. This should be a lesson for all doctors, if a middle-aged guy is complaining about some health issue there is probably something to it. Most guys I know hate going to the doctor and hate spending money even more. So don’t forget to schedule your check-up this year. Sometimes you have to do what you have to do even if it involves turning your head and coughing.

 

Sharing my Story

5 Oct

It’s been another hectic summer; so hectic I have been lax in blogging about the book. From book signings, to participating at summer camp for kids whose parents are fighting cancer, raising awareness and sharing my story has kept the The Year My Dad Went Bald team busy. But I am not complaining, the publishing of the book has given me opportunities that I never knew existed.

For the third time this year, I have been invited by Genentech to share my story and TYMDWB. I will be a featured speaker at the Genentech North American Country Clinical Operations Meeting later this month in San Francisco. Genentech is a biotechnology corporation, founded in 1976. Considered the founder of the biotechnology industry, Genentech has been delivering on the promise of biotechnology for more than 35 years. The brainstorm of my old friend Amy Black who thought that it would be insightful to for me to talk to a gathering of clinical researchers who had come from all over the globe to a meeting at Genentech’s South San Francisco campus.

Although these researchers work in the fight against cancer everyday, few of them had actually met someone who had benefited from their hard work. Genentech produces Rituximab, which was very effective in my recovery from non-Hodgkin’s lymphoma.

From the shock of my diagnosis, to my eventual recovery, I took them through the many lows and scant few highs of my cancer ordeal, which culminated, with the publishing of TYMDWB. I never considered myself much of a public speaker but it is a role I that I have come to enjoy. And, at least I get to talk about one of my favorite topics, me!

With great anticipation I look forward to revisiting with the folks at Genentech later in the month.