What season is your favorite? Mine is hockey

This is my winter season team, during our last game of the season, needless to say we were short a few players.


Hockey.

I have written about it many times.  It has helped me get through a lot of things.

Sports.  One thing that helps cancer survivors survive ( I hate the word thriver or thrive, just my personal thing.)

Some people run 5Ks, half marathons, marathons.  Never understood the excitement about that,  maybe I just don't like running, after all marathon comes from the legend of a Greek Runner who was sent from Marathon to Athens to announce that the Persians had been defeated in the Battle of Marathon, and supposedly dropped dead after he relayed the news of the victory.



This does not make me want to run a marathon.

Back to the ice.

We draft two seasons: Fall (Oct-Dec) and Winter (Jan-March)

Fall season I was Co-captain of Apple Tree Inn.  We were last in our 5 team league, with an abysmal 3-8-1 record.  We didn't win either of our two playoff games and well we finished.  

We didn't win the season, however we didn't lose it either.  My fall team, team Apple Tree Inn (seen below)

short once again, without our Co-capt who was out of town on a job, had fun.  We had a game where we got totally blown out by another team 8-0 and my team was in great spirits, because we were having fun (well I am not a goalie, I hope he had fun, even though we lost, sorry Zach.)  I think I missed one game in the fall, I was going to participate in a bike race and, well that didn't happen.  We didn't do great, but when one of the best players in the league tells you it was the most fun they had playing hockey, then you know, as a captain you did your job.  ( I did a good job drafting the team, the hockey gods deemed it a non winning season.

Winter season.

New sponsor.  It happens, businesses decided not to renew sponsorships,  We have had several businesses do that.  Since my co-capt and I had gotten 2 sponsorships, we decided to captain Trish Hartwick Coldwell Banker.  Doing so we became the first all female sponsored and captained team in the league.  Unfortunately once again my co-capt. was out, this time with an ankle injury.  

So we had more jerseys ordered before the season and then we drafted.

I think I drafted pretty well, but again the hockey gods were not favoring us.  We had a 4-6 season and we made it to the semi finals of the playoffs, if you look at the photo at the top of the blog you will see why we lost, most of our team was gone that day.  Most people didn't expect us to make it that far.  I am thinking our team didn't expect us to make it that far.  

I never doubted us.  Not for a second.

You see, every season that you draft, you draft not just people, but your team, that team becomes your family.  For 13 games those player were my family. 

Family.  if you have played hockey you understand.  If you haven't, then it is difficult to explain.  

I don't like missing games.  Most people don't.  I really hate missing games.

I know what it is like to not be able to play.  

I know the feeling when your body hates you, and you can't lace em up, step out onto the ice and skate with your team.

I missed 1 game in the winter, I had bronchitis, I was coughing so much my doctor, who was also on my team, told me to come see her that week.  

I missed a game, 

I wasn't able to play.

I coached from the bench.  (Yelling probably wasn't good for my throat, but I am not the quietest person out there when I am at the rink)

Having bronchitis reminded me of what it was like when I had to stop playing after I was diagnosed.  It is weird how things can take you right back into that moment.  

It was a moment I will never forget.

It was a moment I do not want to repeat.

I may not be the fastest player out there, or the best, but when I am out there I will give 110% every game, because I know that any game you play could be your last.  That is a scary feeling to know about the sport I love so much.

So if you see me play, you will know why I skate hard, yes I like to win, but there is more to that sheet of ice that most people can see.  

That is why to me every game is a victory.

To some it is just a game.

To me it is a whole lot more.

That is why I will keep skating.

 Check out my podcast The Cancer Warrior on Empoweradio.com available on demand, on iTunes, IHeart radio, the podcast app on your iPhone and on stitcher.

"SELF"ish RANT

 

I read a lot of articles and information online, and usually things don't get my ire up enough for me to blog about it but a recent article in SELF magazine really upset me.  It is an article about thyroid cancer, the author quotes Louise Davies, M.D., a researcher with the VA Outcomes Group in White River Junction, Vermont. "Calling thyroid cancer 'cancer' makes it sound like it will kill you, when the truth is, not all cancers matter."

Wait.

WHAT?

Right. so what this article is saying is don't worry about it.  Thyroid cancer isn't really cancer.  If you are diagnosed.  Meh.

I am not a doctor, I have no medical degree.  I give people advice and tell them I am not a medical expert, I went to college for television production, and all my experience I have is from being a cancer patient/advocate.  If you want to take my advice, that is up to you.

But to be an MD and say not all cancers matter is perhaps the most irresponsible statement I have read.

Calling thryoid cancer "cancer" makes it sound like it will kill you.....

That's because it CAN...

It's called cancer for a reason.

I am wondering if Louise Davis, M.D. would give that advice to her daughter, mother, best friend or sister, its not really cancer "cancer"  it's thryoid cancer.

What?

Louise Davis doesn't have to live with the consequences of not treating the non cancer cancer.  The patient does.

Hey Louise, how about this analogy.  If your brakes are squishy, and you push them and they go almost to the floor, when you take them into the mechanic to fix them and he says they are fine, you can drive home.  He doesn't have to drive your car, take your kids to school, live your life.

Tell not all cancers matter to any of my cancer survivor friends, some of whom are thyroid cancer survivors.  We have all seen good friends of ours die from cancer,   and we would never say, well he died from cancer, but not CANCER cancer.  It doesn't matter.

YES IT FUCKING DOES MATTER.

It is reckless to give blanket medical advice like that when everyone's cancer is different.  Yes thryoid cancer is treatable, but so are many other cancers, oh its only Leukemia, its not LEUKEMIA leukemia, it doesn't matter.

 

Every cancer matters.

Every survivor matters. 

 

I would like Louise Davis to explain herself to a roomful of my thryoid cancer survivor friends.

Tell them that it doesn't matter.

Yeah, let me know how that goes...

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone

'Cause I love that dirty water....

Photo above by Jessica Rinaldi/Reuters

Boston.  Everyone's city. At least after the Boston Marathon bombings on April 15th.

I went to college in Boston.  Spent 4 amazing years there.

I grew up in a small town in New Hampshire.  Wasn't the sports nut that I am now, but we would watch the Celtics (back when Larry Bird was THE man), we would all watch the Pats on Sunday.  God they were terrible, but you would keep watching them every Sunday, no matter how much they disappointed you.  It's the Patriots, its YOUR team.

Growing up where the country was started was a pretty amazing experience.  I didn't realize it at the time, but I realize it now, how special it is.  Having all that history, all that culture.  Everything started where you live. You don't think about it when you are a kid.  But when you are older, you realize growing up where our country started, in one of the 13 colonies, is pretty cool.

Ok I grew up in New Hampshire, 2 hours away from Boston. 

I didn't really care about high school.  Looking back I should have done better.  I am smart, but in school people compare you to your siblings, and my brother, 1 grade ahead of me, was class valedictorian.  So I would inevitably get compared to him.  So why should I try if I was always going to be compared to.  Not really a fair thing for teachers to do to a kid.

So I graduated somewhere in the middle of the pack.

Television always interested me so I applied to Newbury Junior College (It's now a 4 year college)  I figured I would get an associates degree and if I liked what I was doing then I would go on to Emerson.

College in Boston.  Our dorms were in Back Bay, on Comm ave, just 5 blocks from the Common. 

I loved going to school there. Finally, in a place full of misfits, I fit in.  It was great.

Patriot's Day.

I heard on the radio there were explosions near the finish line.

I wasn't able to get to a TV until about an hour later and then I saw the images, the videos.

The horror.

Terrorists had placed improvised explosive devices (IEDs) in the crowd at the finish line.  Several hundred people were injured.  3 people would eventually die from their injuries.

The first marathon I experienced was in 1989.  I still remember the hallway of our dorm had boston marathon signs that we had taken.  Signs that were discarded after the marathon.

The marathon was hot that year,  I remember because my friend Sabrina and I walked around and being around all those people and the heat made it even more hot.  It was a fun experience, but I am not a runner, and it is something you should experience at least once, because Boston is THE marathon to run in.

The terrorists took a lot that day, from the people of Boston, and from me they took a little bit of the innocence of the city from me. 
 
It depressed me.  I know the tragedy of it all depressed a lot of people, I get that, but when you are so familiar with a place, when, even though you haven't been there for almost 20 years you are still part of the city.  I think every past college student who studied in Boston knows what I am talking about.  You picture taking money out of that ATM,taking photos of the John Hancock building, walking home buzzed from a party with your roommate. 

I felt incredibly lost and helpless.

4 days.

That's all it took.

4 days to find the people responsible.  Ironically in my college roomate's hometown.  Crazy how small this world is.

I remember when they caught him I felt as if a weight had been lifted off of my shoulders.

I was sad for a city that I hadn't been to in almost 20 years, a city that I have so many fond memories of, I city that will always have a place in my heart.

Big Papi said it in a speech at Fenway:   This is our Fucking city....

Yeah it still is.

It's a Boston thing, you probably wouldn't understand.


Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes, stitcher radio, Tune In radio, Roku and on the Podcasts app on your iphone

X Men

There are those among you who are different.  Sure they may seem just like you, but they are not. You are normal, you don't have what we have.  No its not some exciting superpower, we can't time travel.  Nothing cool like that.
We have something you don't want:

An invisible illness

Sure we may not look sick, and I would say for myself , I'm not all the time.

We fight a battle that you will never see, an internal battle that for some would be too hard to bear.

We don't talk about it, because it has become a part of us, and for those of you who don't have these side effects, well you just wouldn't understand.

How can you explain to a friend you have known for years that when you see them at a restaurant or store you can't remember their name?

Or when you have chronic joint and neck pain, that gets worse when when you get stressed out, how do you keep a smile on your face when you are sitting at your desk and greeting people at your job.

Or the chronic fatigue, being so damn tired all the time then trying to sleep and laying awake all night.

I have a lot of friends with invisible illnesses. 

Lupus

Diabetes

Side effects from chemo

There are many more that I am not aware of, of this I am sure.

It's interesting because the more people I talk to the more I find out about their invisible illness.

You will never hear us complain about what we go through, except with each other.

We smile and laugh to ourselves when we hear others bitching about what a crappy day they had, if their computer stopped working or they had a flat.

If only I had a flat instead of chemobrain.  Flat tires are easy to fix.  Searching for words when they just aren't there isn't an easy fix, its especially difficult when you do a live radio show.


There is nothing like knowing what you want to say but can't say it and there is dead air.

But I am not  complaining, it's a part of me, unfortunately.  Something I have to live with most likely for the rest of my life.  It is simply an explanation.

So the next person you meet may be one of us, or may not be.  You will never know if they are one of us, one of the X Men.

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone

AGAIN

There is a scene in the movie Miracle where Coach Herb Brooks makes the 1980 Olympic team do the now infamous blue line drill after a game that the team was paying more attention to the girls in the stands to the Norwegian team they were playing.


It is a drill that no hockey player wants to do:  Goal line, blue line, Red line, blue line, goal line and any variation therein.

In the movie it is referred to as the AGAIN drill.

Again.

Never a word a cancer survivor wants to hear.

Had a routine blood draw, although I guess after cancer nothing is really routine.

Got a call from the nurse practioner that she wanted to talk about my labs. 

I knew it wasn't too bad since the doc didn't call me, those are the calls I dread.

The blood draw I had was to test my thyroid and D3 levels.  Somewhere along the way during cancer treatment I got hashimoto's thyroiditis, yeah its really called that.

So the Nurse Practitioner and I do the phone tag thing.

Labs show your levels are up.

No wonder I have been tired, I know I stay up late and enjoy a good nap, but seriously, people who have these diseases that give you chronic fatigue should be pillow testers or something.

Hmm I may be on to something maybe I should write relax the back or tempurpedic for a sponsorship.

Back to the story.  Doc thinks I should up my dosage and do another blood draw in 6 weeks.

Hopefully this is the last time I have to think about my thryoid...

AGAIN

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone

Meeting the Challenge of Cancer and Care-giving

 

 

Another guest blogger!  Enjoy!

There have been numerous times when my wife made the comment to me that she cannot fathom the things I went through when she was diagnosed with mesothelioma. I’m writing this to shed some light on my experience as a caregiver for her during her illness.

Our daughter, Lily, was born just three months before the mesothelioma diagnosis. After the birth of our daughter, we were radiant and hap

py and were enjoying our new, beautiful family. Suddenly, we were tossed into a sea of worry and uncertainty when my wife received her unexpected diagnosis. I recall looking at my tearful wife and wondering how we were going to survive this period of our lives. It all seemed so frightening and daunting to us as new parents.

Shortly after the diagnosis, I went through an emotional state that was pure outrage at this turn of events. I cursed and shouted and felt completely helpless. My anger got the best of me for a bit; but I soon realized I needed to be strong and stable for my family because they needed me now more than ever. This realization hit home and while I still had my moments of weakness, I did my best to be a solid rock my wife and daughter could depend on.

Once the diagnosis was given, I had a huge to-do list. My regular responsibilities of work, taking care of household chores and helping with our daughter were added to significantly. On top of these tasks, I also began helping my wife with basic care, making regular travel arrangements and scheduling frequent appointments. It was a lot to deal with, but I kept my priorities focused and became determined to accomplish each task set in front of me. I also had a lot of help from the community and family members. I am truly not sure what I would have done without the remarkable outpouring of support that was offered to our family.

Following Heather’s surgery in Boston, the next two months were incredibly hard on me. It is difficult for my wife to imagine what I went through during this time frame. After her surgery, Heather flew to South Dakota to be with her parents while she recuperated and prepared for her next round of mesothelioma treatment. Her parents had watched Lily while we were in Boston during Heather’s surgery. While Heather was recuperating, I only got to see her and my daughter one time during their stay in South Dakota. This was harder on me than I can put into words.

The obligation of maintaining my job while being separated from my family was really hard on me. I made a long drive to visit them one weekend and then returned home to work again. Looking back now, I know we had to face difficult choices while my wife was going through treatment, but I am grateful we still had options. 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.

About the author:

"Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world's turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma.
Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey."

It's always something...

Today I read an article online that said Gilda's Club is changing its name to The Cancer Support Community Southwest Wisconsin because most young people do not know who Gilda Radner is. 

The club's executive director Lannia Syren Stenz said in the article "One of the realizations we had this year is that our college students were born after Gilda Radner passed, as we are seeing younger and younger adults who are dealing with a cancer diagnosis."  (The Wisconsin Gilda's club is the fourth such club to change its name.)

So this television/comedic icon, who has been ranked as one of the comedic geniuses of the 20th century, one of the original Saturday Night Live Not Yet Ready for Prime Time Players will have her name removed from the club started in her honor by her husband actor Gene Wilder, Radner's cancer psychotherapist Joanna Bull and broadcaster Joel Siegel.

All because our younger generation of cancer survivors are unaware of who Gilda Radner is.

I guess because its before their time they probably don't know who Chevy Chase or Dan Akroyd, Jane Curtin or  John Belushi are.

I bet they do.

Gilda Radner died of ovarian cancer in 1989.  Her husband and her friends wanted a place for people to go to not think about cancer.  

By changing the name to the Cancer Support Community, it does just the opposite.

If you watch any female comedienne today I am betting that Gilda Radner is up there as one of their influences.

I was 6 when Saturday Night Live debuted in 1975.  My parents would sometimes let my brother and I stay up to watch.

Gilda Radner died in 1989.

A 21 year old college student would have been born 3 years after she passed away.

I am guessing the younger generation also don't know who William Stewart Halsted, Larry Page & Sergey Brin or Jack Kilby or Robert Noyce are, even though they should.

Halsted performed the first mastectomy.

Larry Page & Sergey Brin invented Google

Jack Kilby and Robert Noyce invented the microchip.

I didn't know who any of those people were, I had to look them up.

I guess their names wouldn't belong on a door of a club either..

If only there was this amazing place where younger people  who had cancer could look up information, like who is Gilda Radner, and get it in an instant.

Oh yeah its called "the internet."

As Emily Litella would say:  "NEVERMIND"

 

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand, on Itunes and on the Podcasts app on your iphone

One of the realizations we had this year is that our college students were born after Gilda Radner passed, as we are seeing younger and younger adults who are dealing with a cancer diagnosis,” said Lannia Syren Stenz, the club’s executive director.

Read more: http://host.madison.com/news/local/health_med_fit/gilda-s-club-changing-name-as-fewer-know-namesake/article_0893171c-53c8-50bd-900f-6381aee41f71.html#ixzz2DZVrU8aY

One of the realizations we had this year is that our college students were born after Gilda Radner passed, as we are seeing younger and younger adults who are dealing with a cancer diagnosis,” said Lannia Syren Stenz, the club’s executive director.

Read more: http://host.madison.com/news/local/health_med_fit/gilda-s-club-changing-name-as-fewer-know-namesake/article_0893171c-53c8-50bd-900f-6381aee41f71.html#ixzz2DZVrU8a

Looks can be deceiving

If you stopped by my house and saw this winter hat, you would think nothing of it.  I live in a cold climate, something anyone would wear during the winter. 

But this hat means a lot to me.

Cap
Chapeau
Toque
Hat

There are many names for it.

But this particular one is important.

I wore this when I lost my hair during chemo.

I knew when I got my head shaved I would probably be cold.  I usually have long hair and not having any well that was an abrupt change.  When I thought about what hat I should get to wear during the winter, to treatment, at home and when I slept I knew I wanted this one.

Under Armour.

I know its a good brand because I wear it when I play hockey.  I think I started wearing it before it was the normal thing to do, wear a dry wick material shirt under gear.  Bought my first shirt in El Segundo, California, where the Kings train, back when it was called HealthSouth, now its the Toyota Sport Center.

I wore the hat because it not only covered my head, but it reminded me I would get stronger.

Its funny what we cling onto when we go through something like cancer.  I imagine other people have trinkets and lucky stuffed animals that they cherish, that to other people look like a knick knack on a shelf, or just another stuffed bear.

But to survivors, these things can mean the world.

To me its a reminder of where I have been, and how far I have come.

Are you wondering do I still have my cap?

Damn right I do.

Check out my podcast The Cancer Warrior on Empoweradio.com
Also available on Itunes and on the podcasts app on the iphone

Milestone

Five
Cinco
Cinq
Fem
пять.

Five.;  In any language it is just a unit of measurement.  Days, weeks, seconds, moments.

Five.

For cancer survivors its the magic number.  5 years= remission.

I just had my last oncology visit before my 5 years of being cancer free, which I will celebrate at Red Wings training camp (if there is no lockout)

It is a milestone.

It has been a while since I have written anything.  Over a month.  Not that I haven't had anything to say, just have been busy.

Living life.

Milestones

Hockey

LA Kings

Home ice.

You never forget home ice, the first place you skated, the first game you saw.

I learned to skate late in life, at Pickwick Ice in Burbank, CA, my California home ice..

Staples Center

where I saw my first hockey game. It was awesome

Now if you read my blog you know I am a big fan, and a lot of good things have come surrounding sports, particularly hockey.

The LA Kings, when I first started to get into hockey were in a constant rebuilding year ( starting in 1997)

I still stood behind them though, even though they were awful, when I couldn't get anyone to go with me, because they were so bad or no one was as big of a hockey fan as me.

Even when I moved to Michigan, LA was still "my team"  Yes, I do love the Red Wings, their 2007-2008 stanley cup winning season helped me immensely spiritually and emotionally,  but you never forget your first love.

Milestones

The Kings were a long shot to win the Stanley cup this year.  Came in 8th place out of 8 teams in the western conference.

No one would have thought they could win.

Not even me.

But they did.

First time an 8th seed beat the top 3 teams in the division, and beat the eastern conference champions the NJ Devils.

Watching the Captain Dustin Brown hoist the Stanley Cup at Staples was a surreal moment.

Some days I still can't believe the improbable run.

Some days I can't believe all the things I went through with this damn disease.

But here I am.

On my 5th year of being cancer free

The Kings win the cup.

That is a pretty awesome milestone.


Check out my podcast The Cancer Warrior on Empoweradio.com
Also available on Itunes and on the podcasts app on your iphone

All I wanna do

Recently I was reading about how Sheryl Crow told the public she had a brain tumor.  I was shocked and stunned.  I was (shockingly) not by a computer so I didn't know the full gist of the story, my heart sank, thinking she had a recurrance or a new cancer.

I searched online and read this article  about her brain tumor.  Fortunately it is benign.  Unfortunately it is causing memory loss.  The writer of this article joked: "Man, if we ever forgot any Sheryl Crow songs, we’re gonna to start freaking out. Doctors should start including “Crow forgetfulness” in the list of benign brain tumor symptoms. If you can’t at least get through the chorus of “My Favorite Mistake,” straight to the MRI machine you go!"


Ha freaking Ha...

It is one thing for a person with memory issues to make fun of themselves, its a whole other ballgame if someone else does it.

I have chemobrain, cognitive memory issues caused by the chemo I took because of my cancer.

It sucks.

Ok I know I am not a grammy winning songwriter with millions of fans, and while making light of Crow's situation may be funny for Halle Keifer (and for the record, I have no idea if she has ever had cancer or what her relationship with cancer is) it strikes a deep nerve with me.

It's hard knowing what you want to say without being able to say it.  To visualize an object or place in your mind when you are wanting it, say a pen or want someone to get something out of, for example, the kitchen.

When I meet people I don't know, which I often do, I hope I don't forget the name of my friend with me, which has happened on occasion.

Or if the grocery store clerk asks if you want paper or plastic and you stare at her blankly, knowing the answer but not being able to verbalize it.

Or being on a live radio show, trying to explain something to the host on air only to speak in either gibberish or fight for the right thought.

My friends understand, its one of those side effects that I have, they know if they ask me a question and it takes me a minute its not because I am slow, or stupid.

It is chemobrain.

It sucks.

It isn't funny.

Try to remember that, Halle Keifer, next time you write an article about someone with a serious condition.

I may not recall everything Halle, but I will remember YOUR name...



Check out my podcast The Cancer Warrior on Empoweradio.com
Also available on Itunes.

Dormez-Vous?

Frère Jacques, frère Jacques,
Dormez-vous? Dormez-vous?
Sonnez les matines! Sonnez les matines!
Din, dan, don. Din, dan, don.

A song that I learned when I was a kid.  I had this stuffed toy, a white french poodle with a music box inside that played that song "Are you sleeping?, Are you sleeping?, brother John, brother John, Morning bells are ringing, Morning bells are Ringing, din dan don, din, dan, don"

5 years of high school french and this is what I remember.

Ironic.

But relevant.  I asked my Doc at my last checkup what could be making me tired.  She did the full round of tests thryoid, vitamin D etc.  Everything checked out.  Another mystery.

So then I began thinking ok, is this just residual side effects from chemo, radiation or who the hell knows what?

I do have chemobrain.  I know this for a fact.  Nothing better than looking like an idiot at the grocery store when the clerk asks you paper or plastic and you are looking right at the bags and the answer escapes you.

Ok side effect, sure, could be, but what could make me so damn tired?

Maybe I push myself too hard?

Work too much?

Go to bed too late?


All of the above?


None of the above?


Effexor

The meds I take to manage my "major depressive disorder" fancy word for depression make me tired.

I have to take effexor with food or else it will make me dizzy.

So I take it when I eat either at breakfast or at lunch.

About an hour and a half after that I start to get tired.

Now its a good thing I work at a radio station and not guarding the missiles in this country, or else we may be in trouble.

I can't stop taking Effexor because I would rather be tired than depressed.

But being tired and fatigued reminds me of when I was going through chemo, and it scares me a little

All those what ifs.

What if its not the meds?

What if the cancer comes back?

What if?

You can't live your life in what ifs.

And unfortunately you can't live your life nap to nap. 

I have tried.

People don't understand side effects, people who don't have to deal with them anyway. 

The meds also give me insomnia.

So I nap when I am tired then I try to sleep and sometimes I can't.

I know it sounds like bitching or whining, but its not.

Just explaining.

If you don't deal with side effects or what are called invisible illnesses, a great website started by my friend Christine Miserandino called   But you don't look sick

So if you see me up late online wondering "Man, does she ever sleep?"

Now you know the answer.

Check out my podcast The Cancer Warrior on Empoweradio.com Available on demand and also available on Itunes. 

PBS Series A Wider World Segment "Cancer Etiquette"

Survivorship and Depression

I was recently on the PBS series "A Wider World" to talk about my cancer survivorship. Here is a segment they filmed about my battle with depression.

My dinner with Susan

Remember when you were in school and the teacher asked you to pick one person dead or alive from any time in history to have dinner with, to talk to, to gain words of wisdom from?  I do.  I can't recall who I picked, but family members aside (yes Dad, you would be first, as long as dinner would include your delicious goulash)  I would pick Susan Komen to sit down and have dinner with.

"What???"  You are thinking...

"All the amazing people throughout history and you pick her?"

I am a bit of a history buff, I love the stories of how our country was founded, hey I grew up in one of the 13 original colonies, can't help that, and the whole story of Pearl Harbor intrigues me, but yes even with the chance of having dinner with John Adams or George Washington, I pick Susan G. Komen.

As any cancer survivor knows her battle and unfortunate death because of cancer started the Susan G. Komen foundation.

Nancy Brinker.

Susan Komen's sister.

Her name instills anger in many cancer survivors, because of the recent uproar over "pinkwashing", something I had written about in 2008 on the stupid cancer blog.

and then again dear dear Nancy and her Komen foundation created Promise Me perfume, ironically which could cause cancer, and most of us have issues with strong fragrances while going through chemo and well beyond that.

And now pulling funding from planned parenthood, which it seems to be a political move, and many assume that the poor and un and underinsured will not be able to get mammograms.

Then panic sets in.

Now lets be honest, Planned Parenthood isn't the only place women can get mammograms or cancer information. There is no need to press the panic button.

Komen however did press that panic button and decided to rescind their decision on  funding planned parenthood

Dinner time.

I can imagine Susan and I sitting down to dinner.

I think the first thing I would show her is the Komen website, show her where it says about Susan, which is little more than a glossed over story about Nancy.

Tell her that even though her sister has taken the pink ribbon and tried to sue other organizations for using it, as well as suing other organizations who use for the cure as if breast cancer is the only cancer we want cured.

Let her know that it was in fact Evelyn Lauder who created the pink ribbon campaign, and the Estee Lauder foundation has not tried to sue other organizations for use of the pink ribbon.

By this time I can imagine Susan is silent.  Wondering how this all has happened.  How an organization that was founded through, what I am sure was love, has become so large, so hated by many, including the very cancer survivors the organization was founded for.

I wish I could actually have this dinner, have this conversation. 

Wonder what she would say that her sister can't see the cancer awareness forest for the pink trees? 

Ask her how putting a pink ribbon on friskies or alcohol furthers research and awareness.

But I can't

I can only wonder how her sister Nancy became so far removed from what she started

for Susan.



Check out my podcast The Cancer Warrior on Empoweradio.com Available on demand and also available on Itunes. 

Interview on BBC radio program World Have Your Say

BBC World Have Your Say Interview with The Cancer Warrior Dec 16,2011 from Cancer Warrior on Vimeo.

I was honored and humbled to be requested by the BBC to speak about "The Topic of Cancer"  Here is my segment on the program.

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand and also available on Itunes.

What its like to survive

Another guest blogger. Enjoy.

What’s it like to survive? Have you or someone you really care about ever survived something that could have changed things forever?

Being a survivor sets you apart from other people in that you have a totally different view on things after “surviving”. No, I am not suggesting that we survivors are better than other people or anything like that; after all it’s friends and family who helped us survive, bring us through the hard times, and stand behind us as we continue on our journey. In a way, they survived too and are a part of the survival team. Think about it, a mom having to watch her child go through treatments for cancer? When that’s all over, you better believe she feels like a survivor also!

Survivors of car wrecks, wars and other diseases all know that they have, for some reason, been given a second chance; and I’d like to think that second chance, was not by “chance” exactly. Now my next comment is not to just show my fascination with conspiracy theories and secret clubs like the “Skull and Bones”, but I would like to think of survivors as being in their own little club too. (Unfortunately, we don’t rule the world though!)

As a survivor, first and foremost, we realize that we are temporary. No matter how great things are today and at this moment, we know that it can all change in an instant. We carry this attitude with us at all times. Whether we are at the Christmas party hanging out with friends and cutting up (break dancing in some cases), or at home relaxing with our families, our survival and what “could” and “could have” happened is always tucked away within us. We know that the unthinkable does not just happen to “other people.”

Now, this all shouldn’t read as the “poor little survivors”, because we are not “poor little survivors”; we are “blessed little survivors.” We now have a new appreciation for the smallest things, for all kinds of people that enter our life; we now take the time. That’s what it’s like to survive!

Ryan Hamner is a 4-time survivor of Hodgkin’s Lymphoma and a singer-songwriter who travels performing and speaking to those affected by cancer. Please check out his new song, “Survivors Survive” online at http://www.hearthehearttour.com and learn about his community for cancer survivors at http://www.2surviveonline.com .

Flip the switch

I had an appointment with the doctor the other day.  My general practioner.  Regular checkup.  My doc always asks about my meds, my moods.  Told her sometimes I feel down. Yeah I get depressed.

Sometimes I can snap out of it pretty easily, sometimes I can't.

This was one of those times I couldn't.

I wish I could figure out what brings my mood down.

Some days it seems like it comes out of nowhere, and suddenly I am deeply entrenched in emotions that make no sense to me, but sometimes they do.

It can come in waves, like one moment I am fine the next I am not.

Its worse when your alone, or at night, when there is nothing but your own thoughts surrounding you.

I guess its no wonder that it is hard for me to fall asleep because when I feel this way all I do is think about the things that bother me, or what is upsetting me.

The thing that really gets to me is how I can be fine, then just feel totally steeped in it.

Its inexplicable really, unless you have been there, and if you are reading this I hope you never have been.

I recall one of the times that I felt the worst was right before the carcinista had passed.  That was end of April early May of this year.  I was at a friends house apologizing for the way I had acted, another wonderful thing about this mental condition of mine, I have a tendency to lash out at people that I care about, do and say shit that is totally out of character for me.  I don't recall exactly what the conversation was about but I know I was in a dark place and I felt utterly lost.

Its not something you can just snap out of.

So I try to make sense of it all. Figure out what gets me down.

Ultimately I have no idea.

Right now I am feeling pretty fucking good, and man I love this feeling,

The feeling I had before cancer, before Sept 18, 2007.

Then I wonder when my brain chemistry is going to go askew and flip that switch.

Lyrics from Pink's song Perfect:

You're so mean, 
When you talk, about yourself,
 you were wrong, 
Change the voices in your head
make them like you instead  


If only it was as easy as the song makes it out to be.

I will continue on the fight against my own mind, when the depression hits, when the switch is flipped, I gotta find the right trigger to put it back.

Until then I will continue to advocate, blog about it,try to destigmatize it.

That's the only thing I can do.


Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand and also available on Itunes.

Hockey Fights Cancer night at Joe Louis Arena

I had Bekki Nill on my podcast last year.  She is the wife of the Assistant General Manager of the Detroit Red Wings.  She is also a breast cancer survivor.  She invited me to the Hockey Fights Cancer night at the Joe Louis Arena.  Every hockey team has a HFC night.  It is " a joint initiative founded in December 1998 by the National Hockey League and the National Hockey League Players' Association to raise money and awareness for hockey's most important fight."   That is off of NHL.com.  Needless to say I am happy that the NHL sees the need for more funding going towards cancer, and if you can catch a hockey game in the process, well then I am all for it.

It was my first professional sports game I had been to since diagnosis, and the first game I had seen in a suite since I moved from California to Michigan.

Watching the teams warm up made me want to get on the ice and skate.  I hadn't played since March, and there is just something about the sport of hockey that speaks to me in a way that nothing else does.

Watching the game from the suite was an amazing experience.  As I sat there watching the game, the players, I felt good.  Better than I had in a long time.  I think my friend Ashley (another cancer survivor)  and I were the only ones into the game, and I get really into the game.

I honestly and truly appreciate Bekki Nill's invitation to Hockey Fights Cancer night at the Joe.  Probably more than she realizes.



The Red Wings helped me fight cancer.

Hockey helped me fight cancer.


And it still helps me now through survivorship.

As I think of that night and look through the goodie bag full of stuff I will always be grateful to the Wings, and especially to Bekki, and her husband John for what they have given me, not the autographed Lidstrom puck or the pink hat with the Winged Wheel.  

But for something more. 


They keep me skating, and advocating.

Hockey really does fight cancer.

Check out my podcast The Cancer Warrior on Empoweradio.com.  Available on demand and also available on Itunes.

Transformation, turning points and clarity in life.

A guest post from Mr. Wonderful

Well here we are, coming close to the end of September. Have you heard? It's Ovarian Cancer Awareness Month! There's a lot to know about ovarian cancer and cancer awareness in general. But, I would like to share something a little different today. Two stories about how ovarian cancer has change my life: the first, about my wife, Sarah Sadtler Feather (1971-2011); and the second about me – after losing my wife. Both stories are about transformation, turning points and clarity in life.

Sarah – Rock climbing at Estes Park, Colorado with First Descents, September 2010

 

A year ago, Sarah ventured to Estes Park, Colorado to attend a rock climbing program through First Descents, an outdoor adventure program offered to young adult cancer fighters/survivors that is designed to enable a defiance of cancer, a reclamation of life and a connection with others doing the same.

Rock climbing was definitely not in Sarah's standard repertoire. As a matter of fact, she'd never even tried it. She was scared, but intrigued. I know she was also excited for the opportunity to check off a new item on the bucket list. 

During her five-day trip, she experienced two incredible personal transformation points. Both would remain a part of her to her last day. One would give her strength. The other would ultimately take her life. 

It all started with the elevation. At close to 9,000 feet above sea level, the air's a lot thinner than where we live outside of Boston, MA. Ovarian cancer had raided her body, and Sarah knew her lungs were already getting weaker as metastases were taking hold, ever so slowly. Going to the gym was becoming harder, but she still went three or four times a week. In Colorado, the higher elevation made her feel like someone was sitting on her chest. Fatigue had been a part of her daily existence for more than 4 years, but now it took an even deeper hold. Suddenly the idea of rock climbing, an energy/oxygen-intensive activity, was terrifying. 

She called me via Skype every night from her bunkroom. Often in tears, exhausted, frustrated and deeply disappointed, she would say how hard things were. She felt like a failure. I did my best to listen and to be supportive. But I'm sure I also gave too much advice, reminding her of how amazing she was and of her wonderful accomplishments.

But Sarah's struggle at Estes Park is what gave her a new strength. While she had already been through hell and back with numerous major surgeries, an ileostomy, chemotherapy more times than I can count, depression and more, this new challenge was powerful and exciting.

With help from her fellow campers and the amazing staff and volunteers at First Descents, Sarah was able to complete climbs, stand at the top, see the views and embrace her successes. Something about the physical experience of climbing a giant rock face, while others cheered her on, let her find a new strength, a deep vigor that would guide her to meet her goals in Colorado, and, later, would guide her at home as she completed her journey of life.  

When she returned home at the end of the week, she was different. She knew something she had not known before: the end was coming. Nothing could stop it. It was simply a matter of time. Her lungs where getting worse. She could feel it and knew it was time to help people understand.

But, she also had this new sense of strength, combined with hope and a deep, profound love for life. She shared this with me, with our boys, our family and friends. As she moved closer to the end, she encouraged me to live my life to the fullest, to keep going, to be strong for myself and our kids, and simply to remember her and her love in the best ways I could. And in her deepest, giving way, she especially wanted me to love again.

I don't think she knew it at the time (maybe not even when she died), but she was to become a shining beacon - one that would teach so many about life, about death, about love, about courage, about living to the fullest extent we are able.

(You can read her Estes Park story in the following three posts: “Catching My Breath”, “Looking for Footholds” and “Storming the Castle”.)

Ed – New experiences - dating in Boston, MA, Summer 2011

I felt good, but nervous. We'd been talking all night about life, people, places and experiences. Few were shared between the two of us, but the many similarities and differences created some wonderful contrasts. 

The woman sitting across from me was a natural beauty. She was quite stunning with a gentle, beautiful face and long, flowing hair. If she wore makeup, it was very little, and clearly not needed.

Leaning forward, I asked, "What are you looking for in a partner? What do you want?"

"I want to be known," she said, gazing back across the table. I sensed a deeper meaning, but wasn't sure I fully appreciated the significance of her statement.

"Do you mean you want someone who understands you?" I asked, hesitantly. 

Her response was deliberate and pointed. "No, I want to be known." She paused, looked at me and then went on. "Lots of my friends understand me. But none... know me.  I want to be known."  

"Wow," I thought. This was so conceptual, and so far from what I might have expected a woman to say when describing what she wanted in a man or relationship. Her tone was serious, but there was something else. Perhaps a hint of sadness. Clearly something she had pondered, and perhaps had wanted for a long time.

"That takes a long time." I said. "You can only really, truly know someone by spending a lot of time together." 

She gave a slight nod. "Mmm" she said, mouth closed, with a hint of a smile.

That she said "I want to be known" was not as surprising to me as was the depth and importance of her statement. This idea was of a kind that, once implanted, remains active, repeatedly asking for ponderance. I went home that night with my mind hunting for a connection to my own life experience, searching for personal understanding. Of course this raised thoughts of Sarah.

Sarah and I were together for 18 years. She was my wife, my best friend, my love, the mother of my kids, my muse. I was hers. In our shared experience we touched the depths of each other’s souls. We knew each other so profoundly, so completely that our love felt infinite. Our trust was implicit and complete right up to her very last breath of life. 

I held Sarah in my arms as she died. Ovarian cancer had won. As she slipped away and fell limp in my arms I felt my soul shudder. Our love and trust and knowledge had been so complete. Now they were shattered. She was gone. 

I do believe the knowledge we shared will remain in me for the remainder of my days. I will always remember our love, our friendship and all she did for me. She wanted me to move on and be able to live a full life, and she encouraged me to love again.

So now, as I think of my date's statement: "I want to be known."  I think I may fully understand her meaning. And, I agree. I also want to be known... again.

Cancer awareness. Every month. Every year.

I have some strong thoughts on this subject and have posted them at Carcinista.com. Cancer awareness is important. What is even more important, and could have saved the life of my dear Sarah, is to go see your doctor if you are not feeling well. Don't shrug it off. Get it checked out. Be specific. Make sure they know how you feel. Make sure to get a second opinion if you don't feel like they are taking you seriously. YOU are the only one who truly knows your body.

Be well.

Mr. Wonderful