Interview on Your Story Matters with Angela Schaefers 8-10-10

Fearless????

I was planning on writing a blog about something else unrelated to this topic.  This one gets every survivor.

I was having a great day.  Just did a great radio interview. Had an awesome lunch with the crew from work.  My internet still isnt' working at home so I decided to check facebook on my phone.

Thats when I saw the post


Bad News.

My cancer is back.

Nothing sends shock waves through you like hearing or reading that.  Recurrance.  The scariest word a survivor can hear.

I posted something on her wall.  I told her I would help her out in any way I can.  I can't help her out financially.  Financially I am the Titanic and the iceberg is my debt.  Cant seem to steer clear of it.  I can help her emotionally.  Listen to her.  She is far away.  I can't hug her, or be there in person for her.  That makes me sad.

Quite frankly what she is going through scares the hell out of me.

A friend of mine recently called me fearless.

Now you know the one thing I fear the most.

Mel is the producer of The Vic McCarty Show.  Listen Live Monday-Friday 10am-noon eastern on wmktthetalkstation.com 

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

Being Sick is Personal

Another Guest Blogger, Enjoy


If you’ve recently been diagnosed with cancer, or someone you know has, you’re about to
enter something you probably never knew existed: illness culture. As you can see by the
existence of this blog and the thousands of other cancer-specific sites on the Net, having an
illness is a huge part of people’s lives, and as such, it becomes a part of their self-identity.

In this way, illness culture resembles any other group with a defining characteristic in
common, just like people of a certain religion, or motorcycle enthusiasts, or a clique of
teenagers.

And while many find their particular illness culture to be supportive and helpful through
their struggle, some can become sick only to find that they don’t “fit in” in with the
main line of thinking or expression associated with their group. Barbara Ehrenreich, a
breast-cancer activist, discusses this issue in her great essay, “Welcome to Cancerland.”

In the essay, she confronts the predominant feelings and modes of dealing with cancer that
she encountered in breast cancer culture, and how she ultimately did not identify with
them. In her mind, breast cancer’s “cult of pink kitsch” was infantilizing and infuriatingly
positive.

Ehrenreich’s defining emotion about her cancer was anger—anger at the impersonal
treatment by her doctors, anger at drug companies for offering harsh treatments with little
benefits, and anger at her fellow breast cancer sufferers for being unwaveringly cheerful in
their battle with cancer.


My point here is not to knock keeping a positive outlook when ill. As reported in The Cancer
Warrior, staying positive can have great benefits for people fighting cancer. My point is
that, like any other type of groupthink, illness cultures can be single-minded, and those
who don’t fit into the current line of thinking can find themselves excluded and alone—this
on top of the fact that they are already facing a serious illness.

In the end, sickness is incredibly personal, and all types of reactions to illness and ways of
dealing with it should be actively welcomed. It’s important that those facing illness, and
their loved ones, recognize this and internalize it. While some may deal with cancer by
distracting themselves, others may need time to grieve over their situation—even to feel
sorry for themselves.

In America, self-pity is often regarded as the worst type of emotion; we live by the “pull
yourself up by the bootstraps” line of thinking. This aversion to self-pity and the endless
positivism seen in many illness cultures is unrealistic and doesn’t reflect the range of
emotions people feel when confronted with cancer. While staying positive is helpful, it’s
also okay to express emotions besides optimism.

If you’re dealing with cancer or supporting a loved one, remember that it is okay for sick
people to deal with their illness in their own way. Discouraging this is counterproductive
and even harmful.



In her essay, Ehrenreich recounts posting on a breast cancer forum about how fed up she
felt with her doctors, treatments, and insurance company. The responses to her negative
attitude were quick and judgmental: “I really dislike you having a bad attitude towards
all of this, but you do, and it’s not going to help you in the least,” said one commenter.

Support groups are supposed to be just that—supportive of one another’s struggle with
cancer, not dismissive or judgmental. People experience a range of emotions as they come
to deal with facing cancer on a daily basis. Realizing your own approach to illness and
accepting others’ is essential to creating an illness culture that helps, and doesn’t hurt, its
members.


About the guest blogger:

Joy Paley is a blogger for An Apple A Day and a writer specializing in medical coding for Guide
to Healthcare Schools.

Tug of war

I have been thinking about blogging about this for a while now.

Many things have happened recently that have made me want to put fingers to the keyboard.  If you are a constant reader of this blog then you know a good friend of mine passed away from cancer recently.  It has been hard to say the least.  Add to that the mountain of debt that keeps getting larger, chemo brain, which frustrates the shit out of me, I don't knowing what I want to say but not having my brain fire synapses correctly, neuropathy, having to take x amount of pills at so and so times, etc, etc, etc.

Some days I feel like Sisyphus pushing the rock up the hill.

My mind is alway working constantly, either thinking about work, or advocacy, or how I can help someone out, hockey, whatever,  it doesn't shut off.  You could look at me and see me sitting calmly at work at the computer or talking on the air, my brain is constantly thinking, (yeah I know I just said I have chemo brain, comes and goes, like the mogwai in the movie Gremlins, don't get it wet, don't feed it after midnight, if only it was that easy to predict when it would kick in)

I battle constantly with this, all rolling around in my head like many tornadoes.  Its frustrating.  No wonder I don't know how to relax.

Yeah you read that right.  I don't know how to relax

I can sit still but I can't relax.  I can't really sleep either  I can't sleep unless I am medicated, I have a mouthguard in at night so I don't grind the shit out of my teeth. 

You know when people get a massage they get all relaxed and go to that happy place, maybe even fall asleep, I don't.   I used to, but I don't know what happened.  I have gotten some great massages here, and they have worked out knots and tension in my muscles.  But I can't relax during the massage.  I don't know why.

I did the reeling and healing midwest program for cancer survivors, a 2 day fly fishing retreat close to where I live.  I know you are thinking what the hell does fly fishing have to do with cancer.  Well let me tell you.  It does help you relax, standing in the water there, with your guide, and nature.  I figured out how to relax.

Unfortunately I can't take the stream and all of nature with me all the time.  Yes the program is totally awesome, and I would recommend it in a heartbeat,and it helped me, but not being able to relax is something I am trying to overcome.

I found a brochure for a pilates program that a local studio was putting on.  It was for breast cancer survivors, designed by a survivor.  It was free, I called, they had to wait for enough participants before they could start the class.

So a few weeks later there I was in class with 3 other survivors, all at various stages of survivorship,all of us were well past surgery.  

We were all there not knowing what to expect.

It was an eight week mat class, doing various exercises to strengthen the core and the muscles around where women would have had mastectomies, lumpectomies and lymph node removal.

Now I wouldn't have thought that something that may look like to the average person, a bunch of simple stretches would have any kind of impact on me, except for maybe getting a little toned.


But it did. 

I have written before about my constant struggle with depression, yes I am on meds, but sometimes the mind can over come the meds, a tug of war in my head, dealing with the many mini tornadoes in my head and just survivorship of everyday. 

I do maintain a positive mental attitude

But some days are harder than others.


Doing the pink ribbon pilates program with the other survivors helped me to find my comfort zone within my self.  Lets face it having cancer  and survivorship takes you completely way out of your comfort zone.


But with pilates it has forced me back in.


And helped me to relax...


A little more than before.


That is something I still need to work on, but I am slowly chipping away at that stone.


I found this quote and I will leave you with it:

Some of the greatest battles will be fought within the silent chambers of your own soul.
Ezra Taft Benson


 Mel is the producer/co~host of The Vic McCarty Show.  Listen Live Monday~Friday 10am-Noon eastern on wmktthetalkstation.com


Check out my podcast The Cancer Warrior on Empoweradio.com available on demand now and also available on itunes.
 

Suicide by Cancer

Another Guest Blogger.  Enjoy

Have you heard that phrase that the media uses?  ‘suicide by cop’?  It’s when someone is so mentally ill, so distraught, so DESPERATE that they provoke the police to the point where extreme force is necessary – generally resulting in death of the ‘suspect’.  Pretty messed up, huh?  It makes you wonder how things can possibly get that bad.  How can a person possibly put their soul into someone else’s hands?  I can’t fathom it and I’m so glad I can’t.

My dad is currently going through something that it makes sense to call ‘suicide by cancer’.  

He was diagnosed with Stage 3 esophageal cancer (no mets) in May of 2009. 

My family is originally from a small, blink-and-you’ll-miss-it town in New Hampshire (Mel is familiar with it…. We were classmates and friends from kindergarten on up through high school).  In 1993 I realized that there was a great big world out there and took off for the great unknown (a/k/a Texas) – I’ve been here ever since.  My brother is here with me… a block away…  My neighborhood is wonderful.  My kids are wonderful.  The schools are wonderful.  WINTERS are wonderful!   A cook-out on New Year’s Day?  Oh, HELL yeah! 

I finally convinced my parents to come down and spend the winter away from the frozen tundra of New Hampshire. 

They planned on staying three months.

They stayed almost a year.

Christmas Eve 2008 we were in the doctor’s office with my dad.  He couldn’t swallow.  ‘It’s his vertebrae protruding’, they said. 

‘Surgery it is!’  We said.

He still couldn’t swallow after surgery.

Insert feeding tube.

Watch the beginning of the end.

Houston has a HUGE HUGE HUGE Medical Center.  It has one of the best cancer centers in the world.  MD Anderson is where all of the big shots go to get treated. 

It’s here!  My parents were here!  What luck!!!

My dad’s doctor had studied under Dr. Michael DeBakey!  (Google him, he’s a big deal) – they told us 3 weeks of chemo and 2 of radiation and the tumor would be GONE!

Dad said, ‘no’

He said he was tired.

He said he was done.

He took my mom and left Texas and flew back to New Hampshire.

(Can you tell I’m a little bitter?)

I know, I know, I know… it’s HIS choice.  It’s HIS body.  It’s HIS life.

But it’s not just affecting him.

My mom LOVES to travel.  (My mom has (undiagnosed) ADHD and can’t sit still)  My mom is a social butterfly.  My mom knows everyone in town.  My mom loves to shop (she’s all about the bargains – getting a good deal is an adrenaline rush for her)

My mom deserves better than this. 

My mom is now a prisoner in her own home.

My dad has chosen his own destiny – but DAMN… he’s sucking her right down with him.

I’m 3000 miles away with two young kids, a husband with a job and volunteer activities up the yin-yang.  I’m no help. 

I call her five times a day (sometimes more).  I try and provide a diversion.  I try to listen.  I try to comprehend.  I try not to take it personally.

Most of her friends don’t visit her anymore. 

They can’t go up to see her because ……. (you fill in the blank)

It’ll bother her

It’ll bother him

They don’t have time

They don’t know what to say

They have other prior engagements

The dog barks

The moon is full

The tide is high

…………….Yada yada yada

All this being said…

           Don’t forget the caretakers – there’s morphine and fentanyl and lorazepam for diseases… but no painkillers for a broken heart.

About the author:  Amy Lord Gonzalez

bio:
Transplanted New Hampshire girl, currently residing in the country of Texas. Stay-at-home mom, rock star wife who makes a mean enchilada and still cheers for the Red Sox and Patriots from afar.
contact info: icknamy@yahoo.com

Endure to Cure

Another Guest Blog.  Enjoy

Why I founded Endure to Cure
by Jason R. Sissel

Many people often ask me why I founded Endure to Cure, and rightfully so.  By popular standards it might seem counter-intuitive.  Why would someone trade a Wall Street career to start a charity?  Well, my answer to that is pretty simple: no regrets.  I am convinced E2C will be a life-changing experience for everyone involved.  The worst case scenario is that everything does not work out and I fall flat on my face; then at least I will have tried my best, gained priceless experience, and I will never wonder what might have been. So with that, I'll tell the E2C story...

After undergrad, I enjoyed a long tenure at Morgan Stanley & Co., earned my MBA at the Kellogg School of Management, and then worked for another great company, Robert W. Baird & Co.   I loved working at Baird and I have a deep passion for the financial markets.  By most people's standards, I may have been "living the dream."  But I felt like something was missing and no matter how hard I tried, I just couldn't identify that elusive void in my life.

Then, on a vacation and four days into what turned out to be a life-altering, six-day climb of Mt. Kilimanjaro, it hit me.  Before my grandfather passed away from his second form of cancer, he simply asked me to carry on his spirit in my life.  It was in the rocky Karanga Camp at 16,000ft as I watched passing grey clouds so large they resembled cotton candy made for King Kong, when I understood what my grandfather's words really meant to me.  I heared his voice in my head, "Jason, you need to think less with your mind and more with your heart and all will fall into place.  When you find the courage to pursue what your heart tells you to do, then work hard, smart and fearless; and do it well.  Now is the time.  Use your resources and initiative to push your limitations outward each day.  And then, selflessly use that experience to positively influence the lives of others.  People may doubt you in the beginning, but if your heart is fully committed to what you choose to do, and you do the right things and give your best effort, I think it will succeed."  Hearing "that little voice" in your head and thinking it's right is one thing, but acting on it is usually the hard part.

Less than a month later, I took the leap of faith and decided to resign from my job.  Over the next few years I will be following one of the things my heart says to do.  I expect to log over 1,000 miles of swimming, over 3,000 miles of running, over 39,000 miles of cycling, countless hours of strength and mental training, and climb a number of the most difficult mountains on Earth.  I do this to complete my Endurance Campaign and raise money to help improve the lives of children with pediatric cancer.  While I endure this arduous physical and mental challenge, I also hope to inspire people to believe that when you have a vision, determination, and perseverance you can overcome any challenge despite how big it may seem.

If you assume that I am a natural endurance athlete, that would be the furthest from the truth.  Just back in 2005, the farthest I've ever run (and perhaps "run" is an exaggeration!) was 5 miles.  Thoughts of a marathon or Ironman would have been absurd.  I didn't even know what an Ultraman was until I was invited to do one.  The fact of the matter is: I dislike running, I don't go distance swimming and distance cycling for personal enjoyment, and aside from the challenge, there is not much I like about an Ironman other than finishing!

But what I do love is having an unrelenting purpose and doing something well out of my comfort zone that changes someone's life, inspires people, or gives a child hope that he or she can overcome a difficult battle with cancer.  While I do not know what it's like to go through round after round of chemo, I imagine that the mental and physical anguish I experience in a long distance event can only be a small fraction of what these children must endure.  That is my higher purpose.  It is what pushes me when I feel like I can't go on.  It is why I believe everyone's possibilities are endless; why our limits begin where our vision ends.  And this is why I founded E2C!

Team Endure to Cure also hosts a team of fundraising athletes known as “Team Endure to Cure” who are comprised almost equally of men and women of all skill levels.  The team motto is, “Anybody. Any Event. Anywhere in the world.”  You decide your dreams, we will help take you there.  In the process, you not only transform the lives of kids who we are fighting for, but also inspire and unite people worldwide.  Our team of athletes raises funds for very specific causes at our beneficiary organizations.  Check us out at endure to cure to learn more and thank you for reading!

Relationship with cancer

 There has been a lot of talk about how Catherine Zeta Jones has reacted to Michael Douglas' cancer and how she is not planning on going with him to his chemo and radiation treatments.  She has come under fire from all sides about how heartless she is, how can she not be with him during this difficult time.  She said that she didn't think she could see him like that, that maybe she should be stronger emotionally but she just isn't.

When I was diagnosed I had several friends disappear.  And I was pissed.  Pissed for a long time.  How could my friends just go away?  Don't they see that I need them?  Yeah I felt that way for a good 2 years.  But then I realized something.  I didn't know what their relationship with cancer is.  Maybe they had someone close to them die, maybe they watch tv and see the fictionalized version of what happens, maybe they are just scared and don't want to see their friend go through treatment.  It took me a long time to get over my anger at them.


So who are we to judge her and how she feels?  How she relates to cancer?  Because we know how we react? As survivors? As caregivers, friends, family, co-workers? 

Michael Douglas and Catherine Zeta Jones live in Hollywood.  Its a fishbowl.  They can't go anywhere without the paparazzi snapping photos and posting online and in the tabloids.  I know.  I lived and worked there for 10 years behind the scenes on television and award shows. Its a different world out there.  Imagine if every move you made was documented in print and on tv for everyone to talk about, to gossip about.  How would you feel?

Now add on a cancer diagnosis to that.  Paparazzi are probably swarming whatever hospital Michael Douglas is at hoping to snap a photo of him at his most vulnerable.  All for a quick buck.

Now imagine that was you.  During treatment.  At the time when you feel the lowest, the shittiest, the worst you will probably ever feel.  Walking to your car.  Someone takes a picture for all the world to see.

So yeah,  I am not upset with Catherine Zeta Jones.  As my friend Donald Wilhelm would say, hey  "it is what it is." 

It's their journey.  Not mine

I have my own journey.

Mel is the producer/co-host of The Vic McCarty Show.  Listen live Monday-Friday 10am-noon on wmktthetalkstation.com

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