Wednesday, August 8, 2012
Goodbye Nancy
I check facebook when I get home. Tonight I got home late after a 14 hour day working my 2 jobs. I saw the link from my friend Betsy De Parry. Komen CEO Nancy Brinker to step down.
Wow.
It is late and I almost didn't want to make dinner before I wrote about this.
This is huge in the cancer world.
I have written about Komen before in a prior blog post about what Susan Komen would say to her sister about the organization that was created in her name
Now Nancy stepped down. The article says it was from backlash from Planned Parenthood funding, but I would like to think it had to do with their pinkwashing of everything from cat treats to toilet paper.
There are many cancer survivors, including myself, who are sickened by seeing the pink ribbon on everything. We don't need ribbons on Friskies, toilet paper or tennis balls. We need cures, we need better treatments, we need better detection for the disease.
Somewhere Nancy Brinker lost her way.
The damage has been done, but nothing is irreparable.
We can fix this.
We have the technology.
Surely if JPL can send a rover to MARS our amazing cancer community can help the Komen Organization see the error of their ways.
Until then..
So long,
Farewell
Auf Widersehen
Au Revoir
Goodbye
Nancy.
Don't let the pink ribbon hit you on the ass on the way out....
Check out my podcast The Cancer Warrior on Empoweradio.com. Available on demand, on Itunes and on the Podcasts app on your iphone
Monday, July 23, 2012
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
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
Thursday, June 7, 2012
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.
Sunday, June 3, 2012
Just Breathe
I can't believe its been so long since I have written a blog. I guess I have been busy with work and life and stuff.
One of the things that I was busy with was going to Washington, D.C. to moderate a panel about social media and cancer survivorship. Most of my friends said that was perfect for me. I am on facebook and twitter talking to many of my survivor friends, and finding new and interesting guest for my show.
The group that I went to speak to were lung cancer survivors. I always thought well survivors are survivors, we all deal with the same issues.
While that is true for the most part, there are lots of things I had no idea other survivors had to deal with.
The one story that stuck with me was of one survivor who told us of how it took almost 9 hours to climb the stairs because she forgot her ipod upstairs soon after her surgery.
Another lung cancer survivor rides hundreds of miles a week on his recumbent bike. (and I barely get in a 10 mile ride a week!!)
Most of the lung cancer survivors at this summit were non smokers.
Lung cancer carries a stigma. Most people think because you smoke you deserve cancer.
No one deserves cancer. I wouldn't wish it on anyone. It has to suck to be asked "Well you must have smoked."
Like that should matter.
Cancer survivors don't take anything for granted. That is one thing that we all have in common.
Next time you are outside take in a deep breath of the summer air.
Some people don't have that luxury.
Lung cancer is the #1 killer over breast cancer and heart disease, yet it is the most underfunded.
What are you going to do about that?
Check out my podcast The Cancer Warrior on Empoweradio.com
Also available on Itunes.
Monday, April 23, 2012
A Hero Named Holden
Another guest blogger, Enjoy
The word “cancer” sends chills of fear down the spines of just about anyone – but it might be most terrifying for a parent who hears the diagnosis for his or her child.
That was the case for the Harless family. An MRI at the Riley Hospital for Children at IU Health revealed their worst fears: the source of the back pain that their two-year-old son, Holden, had been complaining of was a spine tumor, not constipation as one doctor wrongfully diagnosed it.
But today, Holden runs around the family farm with the energetic abandon of a healthy eight-year-old. He’s a heroic survivor and an example of the many triumphs being celebrated at the Riley Hospital for Children Cancer Center, the only such facility in Indiana and a recognized national leader in clinical care and research in cancers that affect children.
According to the National Cancer Institute (NCI), fewer than two American children out of every 10,000 under age 15 develop cancer. While relatively rare for children, cancer is still the second leading cause of death for Americans 1 to 14 years of age, after accidents. The American Cancer Society reports that in 2007, about 10,400 American children under age 15 were diagnosed with cancer and that about 1,545 children die from the disease each year.
Cancers of the central nervous system (CNS)—the brain, brain stem and spinal cord—are the second most frequent malignancy affecting children, and are more common in those under 7, like Holden. And the prognosis for children diagnosed with CNS cancer is less favorable than for other forms of childhood cancer, such as acute lymphoblastic leukemia.
Understandably, “terrifying” is the word Holden’s mother uses to describe the moment she heard his diagnosis. Even more frightening was the choice she faced: allow Holden to undergo surgery, or expect that in six months, without surgery, her son could be paralyzed and never walk again.
That the Harless family encountered such a grim prospect is unbelievable. That is, it’s unbelievable when you see Holden today, brimming with energy and the picture of health. That’s because the Harless family chose surgery, after discussing the options at Riley with pediatric neurosurgeon Jodi Smith, M.D.
Survival rates of children with cancer are on the upswing, according to a study by the Centers for Disease Control and Prevention. Childhood leukemia death rates fell by 3% a year, from 1990 to 2004, the study found, compared to 1% a year for childhood brain and other nervous system cancers. The CDC says improved treatment of childhood cancers is the likely reason for this.
All Mrs. Harless knows, and is thankful for, is that after Holden's surgery, “Dr. Jodi said Holden had done great and that it went better than she could have hoped for. All the doctors were great there. The physical therapists, the neurosurgeons, everyone was phenomenal. I can't thank Riley enough for what they did for Holden. They gave us our family and basically his life."
About the Author: Jon Dawson is an attorney and professional writer in Indianapolis. He has first-hand experience with pediatric cancer as he lost his sister to the disease. Jon writes on behalf of IUHealth and also contributes to several blogs including www.DoseOfMyOwn.com.
Labels:
celebration,
emotions,
healing,
health,
hero,
hope,
livestrong
Tuesday, April 10, 2012
Dormez-Vous?
Frère Jacques, frère Jacques,
Dormez-vous? Dormez-vous?
Sonnez les matines! Sonnez les matines!
Din, dan, don. Din, dan, don.
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.
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.
Tuesday, April 3, 2012
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