Tag Archives: cancer

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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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

 

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.

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.

A Mother’s Fight with Mesothelioma

9 Jul

The Year My Dad Went Bald welcomes a guest blog from Heather Von St. James. Heather is a mesothelioma survivor who was diagnosed three months after the birth of her daughter. Since her recovery she works to offer a message of courage, inspiration and hope to those diagnosed with mesothelioma cancer through advocacy and awareness. This is her story.

A Mother’s Fight with Mesothelioma

If there’s one phrase that’s thrown around a lot during hard times, it’s “it takes a village.” What the phrase means is that in order to get through hardships, it takes a “village” of people – such as friends and family – to help you through it. Although it may be trite, it’s a phrase I’ve really come to believe in; if it hadn’t been for my village, there’s a good chance I wouldn’t be here today.
The first time that I realized the importance of my village was during my pregnancy. With no complications except for an emergency C-section, the pregnancy was very normal. Despite its normalcy, however, all pregnancies aren’t free of hardships. Thankfully, my “village” – my parents, my husband and his family, and our friends – were helping and supporting me every step of the way, even on the delivery room on August 4, 2005. With everyone so happy that day, nothing could have possibly prepared us for the storm looming on the horizon.

Needless to say, this wouldn’t be the last time my village would need to help me.

About a month or so after I returned to work, I began to feel numerous symptoms that are typical of being a new mother: I was breathless, tired, and had no energy to spare. However, I couldn’t quite shake the feeling that there was something else causing my symptoms. As a result, I called my doctor to see what was up. After a few tests, we finally got to the root of the problem.
On November 21, 2005, my doctor diagnosed me with malignant pleural mesothelioma, a type of cancer that affects the lining of the lungs. One of the leading causes of mesothelioma is asbestos, which I had apparently come into contact with 30 years ago as a child. After all this time, it came back to haunt me.

Given only 15 months to live, I knew I had to seek treatment fast. My survival, however, wasn’t just about me: It was also about preventing my husband and daughter from having to live alone and deal with my death. Choosing the most drastic option available, my husband and I left our home in Minnesota, and my mother took Lily with her to my childhood home in South Dakota so that I could undergo treatment in Boston. Upon arrival in Boston, I underwent a procedure known as an extrapleural pneumonectomy, which resulted in the removal

of my left lung and all of its surrounding tissue. After that, I faced a recovery period of over two months, followed by chemotherapy and radiation treatments.

After several months of fighting, I came out alive and cancer-free. Although my survival is mainly attributed to the skill and expertise of Dr. David Sugarbaker, my village played a major role as well. If it wasn’t for the love and support of my friends and family, there’s a good chance that I wouldn’t be alive today. My husband and I formed our own little village in Boston. We met some other amazing families who were going through the same thing as we were, and we all supported each other in our fights. Having these people there with me, going through the same things as we were made all the difference in the world for it. It was comforting to have people to talk to and rely on for support.  My parents had their own village in South Dakota, which helped them in the transition from becoming grandparents to full time caregivers.  Little girls who I had babysat when I was a teenager were grown with families of their own and helped to babysit Lily when my parents worked and people from the church growing up gave so much support to my parents during that time.  It’s amazing how love and support can make such a significant difference!

Cancer, although deadly, is a funny thing: While it throws a lot of bad things your way, from those bad things come a lot of good things as well. Because of this, we as a family embrace both the good and the bad in life, knowing that something good will come either way.

Heather Von St James is a 43-year-old wife and mother. Upon her diagnosis of mesothelioma, she vowed to be a source of hope for other patients who found themselves with the same diagnosis. Now, over 6 years later, her story has been helping people all over the globe. She continues her advocacy and awareness work by blogging, speaking and sharing her message of hope and healing with others. Check out more of her story at the Mesothelioma Cancer Alliance Blog

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.

On The Road

7 Feb

The Year My Dad Went Bald hits the road this weekend to Findlay, Ohio. We were invited by  Carol Metzger-Sturgeon of Cancer Patient Services to sign books at hockey tournament on Sunday February 12. The tourney which features two adult teams from Marathon Petroleum Corporation will be played at the Cube Ice Rink, 3430 N Main Street in Findlay. The chance to meet some new folks who are helping in the  fight against cancer and watch some great hockey sounds like a perfect way to spend at Sunday afternoon. We will be there starting at 5 pm.