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

40 Deeds for Stacy Heath

Another guest blog, about a good friend

Stacy Heath was the most enthusiastic, passionate, fun-loving person most of us have ever known. She gave more of herself than she ever received from others. It was her mantra. She lived and breathed making other people happy. The connections she made, the grapevines she wove, were more often than not the glue that held relationships together. When she died suddenly and tragically in December from a hemorrhagic stroke, the gaping hole that was created in our daily lives was immense. Who could ever fill a space so uniquely hers?

Another dear friend of mine, Randi Hunter, also mourning this great loss confided in both Tom (Stacy's husband of 21 years) and I that she was going to do 40 Good Deeds in honor of Stacy on her birthday. “Instead of crying all day, I choose to do good deeds.” Hearing her positive spin on such a recent and tragic loss, we had to jump on board! Tom and I both agreed to take the day off of work and all together (with my husband) we are going to do 40 Good Deeds to celebrate Stacy in “true Stacy fashion” (as Randi says).

We decided to create a page to get the message out to her other friends and family so we could do it all together. We worked together to create the 40 Deeds page on Facebook in honor of Stacy Heath and her giving heart. The page caught on quickly; many people joined in our efforts to spread the word of 40 Deeds and within 36 hours the page had over 200 likes. Anyone who has ever come into contact with Stacy has been touched by her in some way; it’s a beautiful thing to see so many other people get involved.

Stacy didn’t just do good deeds one day, she did them every day. We would love for people to do daily good deeds and live the giving spirit that Stacy did. However, on this first birthday since we lost her, it will be particularly difficult for all of us. Hence the purpose for 40 Good Deeds on January 23rd, Stacy’s 40th Birthday.

Tom says “If Stacy were here, this is the sort of thing that she would orchestrate or at least passionately participate in.” Spreading this message of goodwill and seeing it ripple through Northern Michigan helps to heal our hearts. As we come together on her 40th Birthday, join us in committing to touch someone else’s life. If everyone did just one good deed, just imagine the impact that would have on our community, families and world. We can change the world one Good Deed at a time, One Day at a time…because that’s what Stacy Heath would want. She did them every day; she even gave the Gift of Life after passing away.

Xo – Anora O’Connor, Stacy’s Friend & Chosen Family
(Also with Randi Hunter, Dear Friend and Tom Heath, Husband of 21 years)

www.Facebook.com/40Deeds

In Retrospect

Should old acquaintance be forgot,
and never brought to mind ?
Should old acquaintance be forgot,
and old lang syne ?

Never really sure what that song meant... Should we forget about the past and not think about it? Or never forget it. Not really sure.

2012 has been an interesting year for me.  

One of great happiness, as well as great sadness.

I celebrated my 5 year anniversary of being cancer free.

And I also lost some good friends along the way.

People like me, who have faced their own mortality, realize how precious life is.

How important it is not to waste even a second of it.

If you are full of hate you miss out on joy

If you are angry you won't be happy.

If you worry  you won't have hope.

You never know when the last time you will see someone will be.

One of my friends passed away this year suddenly from a stroke.

She was one of the greatest people I have ever known.

I still remember the last time I saw her, it was like any other day.

I watched her walk away with her coffee as I was continuing my job,

I had no idea it would be the last time I saw her.

Tell those important to you that you love them.

Know that everyone who comes into your life is there for a reason.

Enjoy every day.  

Drink in the sheer awesomeness that is life, and this earth.

Life is precious.

Enjoy every second of it.

There are 31,536,000 seconds in a year.

 Don't waste any of them.

I'll leave you and 2012 with this quote from John Hughes, from the movie Ferris Bueller's Day Off:

"Life moves pretty fast. If you don't stop and look around once in a while, you could miss it."

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."

San antonio breast cancer symposium

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