Sunday, August 14, 2011

The art of language



Everything has its own language.  For example, if you were to sit down next to me and I started talking about hockey and you had no idea what a shot on goal, PIM, one timer was, you would think, what the hell is she talking about.

Language, words.  Everybody has a hobby or a job that has its own language or terminology.  My friend owns a pilates studio. Before I started taking pilates you told me well today we are getting on the cadillac and doing the one hundred, then we will do the tree and the elephant.  I would think wait, we are getting in a car and what going to the zoo.  ( I haven't done pilates in a while but I know you cant do the elephant on the cadillac, or at least I am pretty sure) 

Another friend of mine chemobabe is a math professor.  That has its own language too.  If someone came up to me and started talking about word problems, fractions or pi my eyes would start to glaze over and I wouldn't understand what they are talking about.  (Did I tell you I totally sucked at math in high school?)

Language. 

There is a language I have learned that I wish I didn't know.  The language of cancer.  The medical terminology that comes with being a cancer patient/survivor.  I can talk at lengths about zofran, chemobrain, side effects of herceptin, adrymicin.  Tell you how good Biafine felt after radiation. Talk about muga scans, ct scans, insomnia, constipation.  Tell you how it sucks when I get depressed. Language.

I hate knowing that language.  I wish I was blissfully ignorant of terms like chemo fatigue, neuropathy & left ventricle ejection fraction.

But I know them. 

As cancer survivors we all know them.  Unfortunately it is not like a foreign language where you get a semester to learn what everything means.  You are essentially tossed off the boat into the ocean, where you have to swim and figure this shit out either on your own, or with the help of friends, family and the internet.

Fortunately there are enough of us out there to help if you find yourself stuck in that ocean.  The sea of words.

I'll be around to toss you a life preserver and help you out.

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

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



Monday, August 8, 2011

Warrior Dash


Before I got cancer I never understood why survivors did marathons, bike races and other endurance events taht they probably would have never done before.  I ran in high school.  Lettered in cross country.  Only ran one year.  I hated it.  Hated running.  I did better when I didn't run between meets.  Ironic I know.  We had 5 girls on the team.  I always came in last of our team.  I can't recall how I did overall.


Now I understand.

Cancer takes a lot of out of you.  It can make you feel weak in an instant when you were feeling so good.

Chemo fatigue.

Radiation fatigue

Fatigue from fucking who knows what.

As a cancer survivor I was sick and tired of feeling sick and tired.  When I was ready I got back to the gym.  Hopped back on the bike.  Jumped over the boards and back on the ice.

I participated in a 5k obstacle course called warrior dash.  I was going to train for it, but like I said, I hadn't ran since high school, and that was oh so many years ago, and my sad attempts at training reminded me why I hated to run.  No one ever looks happy when they are running.  At least not until they are finished running.

So we briskly walked the course.  Did all the obstacles. Got covered in mud. Jumped over flames.  Yes flames.  Crawled under barbed wire.  Finished the race.

Most people were surprised that I did I 5k.  I tell people I only run when chased.

Yeah I had fun at the race, with my friends.

But the Dash meant more than that...

So the next time you see a cancer survivor run a marathon, do a triathalon, or even climb a mountain, you don't need to wonder why.

Now you know.




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

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

Saturday, July 30, 2011

Cruising for the Cure



I am on the board of directors for  Cruising for the Cure, a classic wooden boat show to benefit pancreatic cancer research.

I don't know much about boats.  I know I like to take photographs of them.  I am not a boat geek like the other board members of CFTC.  Truth be told I get nauseous if I sit in the back seat of a car.  That has gotten worse after cancer, and even though I grew up 10 minutes away from a lake I only learned how to swim about 5 or 6 years ago.

I don't think I told the other board members about that...

I have been involved with this organization for 3 years now.  I love to go out and advocate in public.  I love to see where, in even a small way, I have made a difference.

The boat show came at a perfect time for me.  I have written extensively about my battle with depression.  If my friends haven't read this blog they don't know how hard it has been in the last couple of weeks.  I am not sure why that is, stress of everyday life.  Maybe because I started a second job to help pay the bills.  Either way it has been a rough few weeks.

We had a silent auction on Friday, and the boat show/parade was on Saturday.  Both days were picture perfect.  The last 2 years I didn't ride in the parade, I didn't have any dramamine, and I would rather not get sick in a classic wooden boat. This year I bought some in the hopes I would be able to ride.

And I did.

I was introduced to Suzie and Bob Davies who own the boat Tango.  Suzie is on the board of directors for a local cancer charity.  It was a good fit.

We cruised around all of Torch Lake in the parade.  It felt great to be outside in the sun, with the wind in my hair and the occasionally splash of water from the lake.

I understood why Jane Thie loved boats, and why she loved that lake.

If every cancer survivor could experience that feeling, that would be awesome.


A lake carries you into recesses of feeling otherwise impenetrable.  ~William Wordsworth


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

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

Wednesday, July 13, 2011

What is Mesothelioma?


 Another guest blogger enjoy...
 
Patients who come to us often have no understanding of the cancer they have. Unlike more well known and common cancers, mesothelioma is not only a pain to try to pronounce, it’s a pain to learn about. Unless you’re up watching late night TV about needing a lawyer for a mesothelioma lawsuit, you’re not likely to understand the tumor that is sitting inside your lungs is caused by asbestos fibers you may have inhaled 30 to 50 years ago.


The symptoms start small. A cough here. A little bit of chest pain. Shortness of breath. When the cancer spreads, nerve function decreases and patients begin to cough and spit up blood. It’s quite a leap from cold-like symptoms to complete neurological collapse. The survival rate for mesothelioma is often not long because it’s so rarely caught in the first stages. Patients rarely connect their cough and discomfort with their asbestos exposure decades earlier.

What’s so frustrating about mesothelioma is that it’s almost entirely preventable. Our patients who come to us did not get exposed to natural asbestos fibers camping or walking in the woods. They were exposed on the job. About one-third of all mesothelioma diagnoses are veterans who worked primarily on ships laden with asbestos insulation in the Navy. The rest are construction workers, electricians, plumbers, blacksmiths, teachers, hairdressers, and the list goes on. We have women who we advocate for that developed mesothelioma from washing their husband’s asbestos-laden clothes.



  As the Asbestos.com outreach coordinator, it is my job to help raise awareness about mesothelioma. While it’s hard to remember and a mouthful to say, we’re working on making it a household name. The more people know about the risks of asbestos to their health, the more they may understand that their cough is something to get looked at by a doctor. If we can change cancer treatment to focus on prevention, especially for something as avoidable as asbestos, then we have done our job.

About the guest blogger: Jennifer Bingaman is an Outreach and Awareness Coordinator at the Mesothelioma Center at Asbestos.com. You can contact her via email at outreach@asbestos.com, on twitter @TheMesoCenter, or on Facebook (TheMesoCenter).

Friday, July 8, 2011

The Monster Within


We have all heard the verdict in the Casey Anthony trial.  Most of America was captivated by this case.  Most people are outraged by the verdict.

I didn't get into it.  It wasn't the crime of the century.  Yes it was, and well still is, a tragic story.  Most people think Casey Anthony is a monster, a killer. 

Casey Anthony has, if she is indeed guilty only killed one person.

I have a monster in me.  I didn't know I had it in me.  Many of my friends do as well

The monster is cancer.

This monster kills more than one innocent child.

It kills thousands a year.

Kids like Ellie Potvin:


and MacKenzie Stuck:
Why isn't there coverage every night on the major news channels about this?  Why doesn't the fact that a disease takes so much from so many, kids as well as adults, get broadcast every night?

Where is the outrage?

There is no tangible villain to see, no young mother who would rather party than spend time with her daughter.  No person we can look at and hate.  No one to get angry at.

Like I have said.  I was not captivated by the trial.  I am not outraged by the verdict.  When I look at Casey Anthony I don't see someone scary.

The monster with in me:  (that is a breast cancer cell pictured below)



 potentially in all of us, is a hell of a lot scarier.

Film at 11?

Probably not..

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

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

Friday, June 24, 2011

Not really much of a choice is it?



Side effects.

The bain of my existance.

I was getting back to feeling like me after I had upped my anti depressant medication.  The new dosage makes me tired. Like I want to nap tired.  Not that naps are a bad thing mind you, but wanting to nap everyday is.

I first thought I was tired because of how early I get up for my job, but medication tired is different than regular tired or lack of sleep tired. 

Frustrating.

Some days its hard dealing with these side effects.  I put cancer out of my head then it creeps back in in these subtle ways.  Being tired from my medication is another reminder.  Fighting to stay awake reminds me.

Its not like I have a choice.  I can't go off of my meds.  I upped my dosage to put me back to normal.  Because I didn't want to spiral downward again. That is a place I do not want to go to. A place I cannot go to.

So I struggle yet again, with an inner battle. Hoping that it will slowly dissipate, and I will be less tired.

Hoping this will be the last side effect I will have to deal with for a while.

Oprah Winfrey said "Where there is no struggle, there is no strength."

Yeah, but I am sick of being so damn strong all the time...



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

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

Sunday, June 19, 2011

My Love/Hate Relationship With The Net


 Another guest blogger. Enjoy

There are a lot of things I don't like about Facebook, Twitter and the Internet.


I don't like how the Internet splits up our information source--so instead of everyone reading a headline and then forming opinions on it, we get news from so many separate and sometimes unequal places of knowledge (Huffington Post, the Drudge Report, CNN) that the credibility of the facts we get are oftentimes up for grabs.

I don't like that search engines--like Google for example--apparently track the kind of links we click on, keep score, and then "feed" us what they think we want to read when we next search a topic. The engines filter our information based on our past choices, which is okay if there's a disclaimer on top of the screen that says "Hey, I'm giving you this because you last clicked "Paris Hilton" when you were eating that gallon of ice cream and having a down day about your break up when you last searched Paris. Do you really want me to send you to a similar kind of meaningless, airy website about an heiress who does mindless things with her millions with today's new search for "Paris" or do you want to learn about the real city, its history and culture?"

All of this means you and I may not get the same knowledge about politics or food or what's going on in Afghanistan--and that leads to a much grander worry that the world will become more separate than equal. And now that I've scared you, let me tell you what I love about Facebook, Twitter and the Internet. I love--and I mean LOVE--that I can reach out to people all over the world in a moment of fear and doubt and get help when I need it. Like this week for example--

when I got an email about a doctor in Texas who allegedly has the "cure" for cancer, but--and this is where it gets scary for me--has been allegedly "suppressed" by the FDA and the government. Talk about hitting me in my sweet spot--I got so worried and upset I spent three hours googling, searching and otherwise trying to find out who this doctor is and what his treatments are--and worse, if I've been sold a bill of goods by the entire medical establishment over these last 7 years as I try to (now) beat back metastatic breast cancer at age 45.

I'm still working on that last part--I have no idea what to say about Dr. Burzynski and his antineoplastons. I'll keep googling--and asking questions, and using the Internet to help me separate fact from fiction. And for that I am FOREVER grateful for cyberspace and all of our choices out there--whether I've been handed them on a silver search platter or not.

But I absolutely LOVE Facebook, Twitter and the Internet for this one reason--my friends out there who are helping me weigh in on this huge, important, life-in-the-balance matter by reading what I post, doing their own research and then commenting and helping me figure this mess out. I know our IT World is a crazy one--full of potential misrepresentations, mistakes and misnomers--

but knowing I have people from San Francisco to an island 20 miles off the coast of Maine helping me figure out my scared-out-of-my-wits fears-for-my-life makes me feel like I am not alone--that I can do this, I will figure it out.

And if that's the price I pay for spliced up news and misdirected cyber information, I'll pay that bill-- all day long.

About the Guest blogger: Ann Murray Paige is the author of 'pink tips. breast cancer advice from someone who's been there,' available at www.annmurraypaige.com.  She is an award-winning writer, co-founder of the breast cancer non-profit Project Pink, mother, wife, blogger and breast cancer fighter now battling metastatic breast cancer.  Read her blog, "Ann's Diary" at www.projectpinkdiary.com