Uncomfortably Numb

I had read a blog post by my friend Sarah, also known as  The Carcinista, that she had decided to forgo treatment and choose quality of life over quantity.  She has been battling stage 3c ovarian cancer on and off since 2006.  The cancer metastasized to her lungs.  She decided that she didn't want to do more taxol, which makes you lose your hair.  She wants to leave this world with her hair.  Can't say I blame her on that one.  I hated being bald.

So I thought it would be interesting to have her on my podcast.  Not really knowing if she would want to share her story with me.  Its one thing to write about it in the comfort of your own home, its another talking about it.  Sounds kind of weird I know, but since I have been on both sides of the microphone I understand how weird it is to talk about yourself.  Luckily Sarah said yes.

As I listened to her story it reminded me how she was a part of the Inner Tough Girls 12 weeks of transformation, as was I.   I was going through a rough time emotionally during those 12 weeks and I have to say I wasn't the easiest person to deal with  (sorry Angella)  but was grateful for meeting the women in the group. 

Being a cancer survivor/advocate you get caught up in forums, discussions, advocacy, your own survivorship etc.  As some one who has a good prognosis for survival I try not to think about my own mortality.  I did that during treatment.  As survivors we always have that word recurrance on our minds.  In my case it has been shut in the back of my mind.  Not something I think about.

So was surprised about The Carcinista's post.  I know she has been battling ovarian cancer on and off for a while but whenever I read about friends who make the decision to stop treatment it is always shocking to see. 

You always think: WHAT?  Keep fighting!! Don't give up!!

But its not about that is it? 

When you have done all you can, exhausted every option, every treatment, every clinical trial.  EVERYTHING.

When you know that you have fought all you could and now its about quantity vs quality of life. 

 Would you rather spend what you know to be your last remaining days on chemo being bald, feeling like shit, possibly not wanting to be around your family because you have that chemo haze surrounding you?


Or would you want to spend every last waking moment with them, knowing that every day is one day closer to not being with them anymore.

Its a hard decision to make for anyone.  Especially someone with two young children.

As I listened to Sarah tell her story I heard the labored breathing.  I knew it would get harder for her to speak to her husband, to her kids. 

It was hard to listen to, not because her story wasn't interesting, but because as survivors when something like this happens to a friend you can picture it happening to you.  It is one of those surreal circumstances that happens when you are a survivor. 

After I left the studio I called Angella and told her about Sarah's podcast.  Angella had not been online in a while she did not read Sarah's post. 

So I had the dubious honor of telling her about Sarah's choice, while hard, sadly I know she had made the right decision.

After listening to the podcast and informing Angella about Sarah's decision I went home.  Not even knowing what I was feeling. 

How can I be happy for someone who is going to die? 

And why the fuck did I have to be the bearer of bad news?

Now I know in the end, as my good friend Don Wilhelm would have said. "It is what it is"

True

But it still sucks.

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.

OMG Summit 2011 Cancertastic wrap up

Last weekend I was I was able to go to a cancer summit for young adult survivors. To be a young adult survivor you would have been diagnosed when you were age 15-40.  The event was put on by my good friend Matt Zachary, founder of the I'm Too Young For This Foundation.  I really didn't know what to expect.  I haven't been to any events that focuses on young adult survivors and the specific issues that we deal with.

I have to say this:

It was a life changing experience.

Now I have been to many cancer events before, I have been invited to speak and participate at many. 

But nothing had an impact on me like this.

Being in a room of over 350 young adult survivors was amazing.  It didn't matter what type of cancer they had, how old they were.  We all feel the same. 

It was nice for one weekend to not have to try to dance around the cancer subject or try to explain to someone why I feel the way I feel.

I also met many of my online friends in real life.  Many of the people who I have had on my podcast.  It was awesome to meet in person Jonny Imerman, Tamika Felder, Patti Murillo-Casa and many friends who I had only spoken to via computer or text or phone.

Knowing all of these people put me totally at ease, and being in a room of 350 plus strangers could be daunting for anyone, but it wasn't.  I think even if I had only met Matt I still would have been comfortable this element.

One of the great things was that almost all of the people speaking at the summit have the same mindset as I do:

You need to empower yourself as a patient.

You need to be your own advocate.

No matter how you feel, you are not alone.

I knew all of that was true.  I just didn't realize how many others felt the same way.

If you are a young adult survivor this is the event to go to.

Prepare yourself now Vegas, because OMG summit 2012 will descend upon you.

Vegas will never be the same.

And for that I am grateful.


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.

PUSH

Last week I went out with a couple of friends of mine for a day trip.  We went just a couple hours away to just have lunch, go shopping, girls day out. 

I have new hours at work.  I start work at 5:45am and work until noon, sometimes later on during the day.  I should go to bed early, but being a night owl is hard to give up.  I just can't get my ass in bed before 11pm on most nights.

So back to the trip.  It was a great day with friends. Started out about 10am and we got back home around 5 or 6pm.  Great food, a lot of laughs and some shopping thrown in there.

I didn't realize how much the trip to a town just an hour and a half away would wipe me out.  I didn't drive.  I have to ride up front, if I sit in the back seat I get car sick.  Always asking to sit in the front seat is a little embarrassing for me, but it beats the alternative.   Chemo made tolerance for that worse.

When I got home I had that fatigued feeling.  The same feeling I got when I was going through chemo, that tired worn out feeling.

Now being a 3 year survivor I would have thought that feeling like that would be gone.  But no, it isn't.

Being a cancer survivor is hard sometimes.  You do things you did before you had cancer, expecting it to be what it was like before, sometimes it is, sometimes it is not. 

This time it was not.  The fatigue I felt felt exactly like chemo fatigue.  Feelings like that can bring you right back to a particular moment.

Remembering how shitty you felt, or looked.

Even after playing hockey this season, even after the two times a week pilates session I did in addition to the hockey.

I still have times when I feel like that.

I hate that.

I have to remember that it still takes time to heal from cancer, even after three years.

I have to remember that I still have to push myself sometimes to get back to where I was before.

Or push myself past that, to be better than I was.

That is the place I want to be.

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.

The season

I play hockey.  That is not new to any readers of this blog. I played on a coed league this year.  Haven't played coed hockey since I lived in California, because of the expense, and I really wanted to try to get the women's hockey program of off the ground, but cancer had other plans.

So I really returned to the ice this year, in an organized hockey program.  Last time I hit the ice before this was 3 years ago

3 years.  

I found out about my cancer right before the season started in 2007.   I remember telling my teammates, that I had cancer.  That was hard.  It was shocking, both to them and to me. At that point I didn't know what my course of treatment was going to be. 

When I finally saw the surgeon and he told me I had to have a port put in I said, what I can't play hockey for two years?  I actually thought that!!  Isn't that crazy?  I know I have written about this moment many times, but that tells you what an important role hockey has played in my life.  

So I really didn't know what to expect when I was told about this coed league.  Like I said before I had played in California.  There were a few women here and there, I had 2 female teammates on my first team I played on.  Some teams had no women on them.  Some didn't like women playing hockey.  There wasn't a sense of camaraderie within the league, only on our team.

The league manager does a draft.  He tries to put different levels of abilities of players together.  Its a C league, which means we have beginners and intermediates mostly, and some people who play very well interspersed within the teams.  There are 4 teams in this league.  I played on Hartman Law.

Now let me tell you this, in California, we had to buy our jerseys home and away, which was fine.  There is nothing like getting your first jersey with your name on the back.  Its an awesome feeling.  This being a small town that I live in now that is not the case.  They have sponsors for the teams.  So they have jerseys already made for the team, kind of a bummer, but that's ok.  I looked in the bin full of jerseys, found one that wasn't too big, it was #6.

 I remember when I stepped onto the ice for the first game I felt shaky, it had after all been 3 years since I played, but it felt good.  

On the ice everything makes sense, you can take all your aggressions, frustrations, anger, happiness every emotion you have and use it to play.  Its a physical sport, and it can change in an instant with the bounce of the puck, a deflection or a pass. Its also a team sport. You can't win the game alone, you rely on your teammates.

We only played 9 games in the regular season, but I was grateful for every second on the ice.  We won 4 games lost one and tied 4.  

We were in first place.

I didn't score a point in the regular season, and I wanted to so bad.  I had scored goals before when I played in California, and in the first game I played when I moved to Michigan, but I really wanted to score a goal or get an assist.  

I didn't during the regular season.

We had a two game playoff.  The first game was close. We won

Holy shit, my team is in the finals.

I have never been on a winning team before.

Until now.

I don't know what the time was in the first period but I scored the first goal in our final game.

It was a one timer.

All I can remember is seeing the puck on my stick then looking up and seeing it hit the back of the net.

My first goal after cancer.  Awesome.

The game lasted 45 minutes.  Just a blip in time when you consider how long I was in treatment for.

45 minutes, and we played hard.

And won.

The cool thing about this league, is the cameraderie.  My team was happy I scored.

But so was everyone else.

Not everyone in the league knew of my battle with cancer, how hard I fought.

How hard I continue to fight during survivorship for myself.

How hard I fight for others, some I have met, some I never will.

The best thing about this season?

It has brought me closer to feeling like me.

 And its about damn 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.

The Long and Winding Road

Those of you who are frequent readers of this post know I like to exercise.  Makes me feel good, it slowly gets me back to where I was before all of this. Before cancer, before side effects, before I knew so many medical terms one of my doctors asked me if I was in the medical industry, unfortunately, no I am just a student of my disease.
So I have decided to try to take up running again.  I haven't run since high school when I ran cross country. I lettered in that. Still have the varsity jacket, and it still fits.

Running will definitely take me out of my comfort zone. I haven't run since high school because of my knees, and well, quite honestly running never really appealled to me, probably because of the growing pains I had with my knees.  I only ran the one year for cross country, and after I lettered I guess I wasn't that interested in it. 

In high school I wasn't much of an athlete.  Didn't participate in team sports after  cross country in 9th grade I believe.  I even recall that many of my classmates were on diets, drinking diet coke and worrying about their weight.  I never did that.   Wasn't my thing.

Back to me deciding to run.  I have my reservations wondering if I will enjoy it.  I know it will be hard at first.  Different than what I am used to doing.  In the summer I love to ride my bike on the local bike path.  Nothing like you and your bike and you and the serenity of nature.
 
I have a friend who is going to go running with me.  Train me I guess. She is one of the pilates instructors from pilates midwest, the pilates studio where I did the pink ribbon program and where I currently take pilates classes.  I don't even know if that is the right terminology.  All I know is I enjoy going there and she enjoys kicking my butt.
 
So we did a 5k walk this past Saturday, my friend the pilates instructor, Jan and I walked,while the other pilates instructor ran. It was cold, about 20 degrees outside.  It was good to get outside in the fresh air. 
 
But of course we know, as cancer survivors, nothing is ever easy.
 
I have osteopenia.  I need to do weight bearing exercises to keep the osteoporosis away.  So I thought the walk would be a good addition to the pilates and hockey that I do currently.
 
The next day I noticed my neuropathy flaring up. 
 
So let me get this straight.
 
I am trying to get back into shape with the help of one of my friends, and the walk causes a side effect?
 
The neuropathy doesn't really hurt.  My foot is numb.  Its more of an annoyance, but I would rather it not get back to the point of shooting pain going all the way up my leg to my knee.
 
I am hoping that running will cause a break through and it will go away permanently, and not have it return doing something that I want to do.
 
 
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.

Getting back on track

As a cancer survivor I am used to the waiting game.  Waiting for doc appointments, waiting for results from scans.  Waiting, waiting, waiting.  I wonder how much of my cancer experience I have spent waiting.  Probably over half of it.

I am used to waiting for other people, but not for myself.

I am used to going all out all the time.  When I had two jobs I would start my day at 5am as a server finish up  around noon or 2pm, get to the radio station, do some voice tracking, go to the gym, then maybe head back to the radio station to work on a Tigers or a Red Wings game. A 5am-10pm day.  I would do this about 2 or 3 times a week.

I am 3 years into my survivorship, and I am still waiting to be able to get back to that level of energy.  Don't get me wrong, I do have energy.  I still get up early, my work day ends around noon -2pm.  I do pilates twice a week, its winter so I play hockey, but I am still not back to what I was before.  I have to nap during the day to be able to do what I need to do.


Its hard waiting for me.  Its harder not knowing if I will ever get back to where I was before.


I am close.


But not quite there.


This is one of the things they don't tell you about when you have cancer.


This is just one of the many charming aspects of survivorship that I have to deal with on a daily basis.  Just one of the many thoughts that go through my head wondering when I will be back to me, or as close to it as I possibly can be with everything that I have been through.

There are some friends of mine that I haven't seen since I moved from California.  Since I was diagnosed.  Since I had cancer.

Sometimes I wonder how much I have changed and if they will even recognize me.  The Me that they knew.

Its a scary thought to think that they wont.

Henry Wadsworth Longfellow said "All things come round to him who will but wait."

I hope he was right. 


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.

Happy Happy Joy Joy

I have been feeling great for quite some time now.  I know it has a lot to do with playing hockey and pilates.    Exercise raises endorphin levels.  Endorphins make you feel good.  We all know that.

I think a lot of it has to do with not only working out but knowing that I am getting back to my old self.  Not that I can ever get back exactly to the way I was I know that.  Sometimes that is a hard reality to face.  But very close. 

I still remember telling my hockey team I had cancer.  I still remember what it feels like to be going through treatment and not being able to do anything.  To be tired and weak. To feel shitty and feel like someone else.

Cancer takes so much from you.  So does the chemo. It can strip away feeling like the person you were, to a person you don't even know.  Makes everything about you feel like someone else, down to the very core of your soul.   It took a few years of doing things that I love doing away from me. I When I was going through treatment I would look forward to these days and hope that they would come quickly.  Now I look back and am glad that it is a distant light in the tunnel behind.

Like I said I am feeling good.  I didn't realize how bad I felt until recently when I realized I felt so good. 

I felt so bad for so long I didn't know the difference. 

Now I feel so great I don't want it to end.  I am hoping it wont.

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.