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

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.

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. 

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