Tag Archives: lymphoma

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

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.

 

A Great First Year!

29 Mar

With the taxes paid and 2011 officially behind us (in a fiscal sense) I was happy to make a donation to the Lymphoma and Leukemia Society and Hockey Fights Cancer from the proceeds of sales of “The Year My Dad Went Bald.” They are great organizations and we are proud to be in partnership with them. I also want to thank everyone whose support made the book a success beyond my wildest dreams. I have met so many great people who are doing so much to fight cancer and look forward to another great year.

What a Week–TYMDWB in Print and in the State House

20 Mar

I thought the most exciting time for TYMDWB would be when we released it, but this has been a pretty incredible week.

First, our good friend Dan Trittschuh, who was actually with me the day I was diagnosed with NHL, wrote a column about our shared experience in Suburban News Publications, one of our local weeklies. It was an amazing column–bringing me so clearly back to that time and helping me remember how much I value our friendship.

And then I open the Friday mail and discover a proclamation from our Ohio State Rep. John Patrick Carney (22nd district) who authored a State House honor for TYMDWB. I was absolutely speechless. What an amazing thing to have happen, and I am so grateful to Rep. Carney for supporting our book and efforts to help those with cancer.

Some local Columbus orders for the book came in this week, which I think may have been spurred by Dan’s column. As grateful as I am for those purchases, I also know they may mean another family is facing cancer. So to all those who order I say, “Thank you, and we are here for you.”

Join Us Tonight for Family Skate for a Cure

12 Feb

Big end of week and weekend. First, Brian get a clean bill of health from his doctor–no sign of cancer and no more CAT scans until February of 2012. Woo hoo! Now tonight he will hold his first book signing at Chiller North, 8144 Highfield Drive, Lewis Center, OH 43035-9673, (740) 549-0009, as part of FAMILY SKATE FOR A CURE, organized by Leukemia and Lymphoma Society supporter Jen Richards and her fellow teammates with TEAM IN TRAINING. Please join us from 7:30-91:15 p.m. for the skating, and pick up a copy of TYMDWB while you are there–signed by the author! Click and print the discount skating coupon below!

FAMILY SKATE FOR A CURE