The Big Bang Theory

I’ve been trying for months to get tickets to see a live taping of the show “The Big Bang Theory”.  I’m borderline obsessed with it right now.  I thought a lot about it last night and I think I discovered why.

Besides being a funny show and it woud be a blast going, there’s underlying feelings about it for me.
Back when I was a Genius at Apple, quite a few of my co-workers watched the show.  I’m not sure why I didn’t at the time but I just never checked it out then.

Fast forward to my second trip to the hospital last year.

When I was in the hospital the first time for my surgery, MJ was there the whole time and I was flooded with visiters.  I was there 12 days and I don’t think I was alone for a minute.  It was amazing and I appreciated all the support.  I needed it.
When I went in the second time almost 2 months later, MJ couldn’t take that much time off of work again and I didn’t tell everyone right away I was back in the hospital, so I had some alone time.  It was OK though, I needed that too.  I was really sick.  I spiked fevers up to 104 and had cold sweats and was just pretty miserable.  I don’t remember now how long I was there, but it was quite a few days again and without visitors and no energy for much else, I got quite a bit of TV time.

One of the nights I was alone and couldn’t really sleep I clicked on the TV and flipped from channel to channel, over and over.  Couldn’t find a thing to watch.  Finally on one of the passes I saw a clip that said “Up Next: Big Bang Theory”.   Huh.  Wanted to check that show out, guess this was my chance.
I watched that episode and LOVED it.  I couldn’t believe I hadn’t checked it out sooner.  And as luck would have it, they played 4 or 5 more episodes back to back.  Awesome!
Every night at that same time they played 4 or 5 more episodes.  And it made me laugh.  It made me forget how sick I was for a few hours.

Once I got home I was still pretty down and couldn’t do much so I had more time to kill.  I went and got all 5 seasons of The Big Bang Theory and watched every episode.  I don’t remember how long it took me I just remember how sad I was when I finished that last episode.  I couldn’t wait for the new season!

I noticed something when the new season arrived months later.  I felt a little weird watching it.  I got a little lump in my throat when I heard the theme song.  I didn’t figure it out right away, but as I started noticing other little things (like the smell of the soap in the infusion center), I finally put it together that I was associating those nights in the hospital with the show.  Those gut feelings of being sick, scared and alone.

Once I realized that was happening I tried to watch the show in a more positive mood.  Sometimes I would have to skip the theme song since that seemed to be a big trigger.  I can enjoy it now but there’s still a little tiny reminder every time.

I think this all made it super funny when I had to meet with Dr. Hampshire in Dec. when my oncologist, Dr. Huynh, was on vacation.  Dr. Hampshire resembles the character Sheldon Cooper from the show.  He even has some of the same mannerisms.  I was having a hard time concentrating on what he was saying.  I kept waiting for a “Bazinga!”.

See for yourself…

PARSONS

So I’ve come to the conclusion that the reason I want tickets to see the taping so badly is that I want to rewrite my history with the show.  I want a fun new happy experience with it.  I’m finding myself having to do this with other things too.  Like the infusion center soap.  It’s from the same facility so it smells like the hospital soap.  I need to find a way to associate the smell in a better light.  I know this all sounds kinda weird and it’s not that my hospital stays were horrible.  Quite the opposite.  They took great care of me.  It’s just that reminder of how sick I was.  I was in survival mode at the time and didn’t even realize it.  And now that I do it’s hard to think about sometimes.  I don’t want to totally forget, it’s a part of what I went through and continue to battle, but I’m just trying to find new ways to associate.

So if you know someone who knows how to get tickets to the taping?  Let me know.
I’ve been trying every Monday and haven’t had luck yet 😦

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Mile 24

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I’ve finished two full marathons and during both of them, mile 24 was the toughest spot.
I think it’s the toughest mile because you’ve come soooo far and you see that mile marker and you get extremely excited!  Only 2.2 more miles to go!  And then you feel your body.  Every part of your body.  Your feet are swollen and starting to blister, your knees are begging you to just stop.  You have aches and pains in muscles you didn’t even know you have.  Your body starts to override your brian’s joy and tell you..  YOU HAVE 2.2 MILES TO GO  UGHHHH!  And those 2.2 miles in your mind start to feel like they may as well be another 24.

That’s where I am with this cancer and chemo right now.  I just saw the 24 mile marker.
I have 2 more rounds and then I get a new scan to see where I’m at.  I have high hopes for good news.  I even have visions of those last 3 tumors being gone and reaching N.E.D.  and maybe, JUST MAYBE I’ll get a chemo break.
I had my first round the end of March last year.  I had a small break in April but have been going pretty solid since May.  It’s along time.
My brain is so excited at the prospect of not having to do treatments and yet my body is pointing out there’s 2 more rounds.  Two more rounds of being tired.  Two more rounds of acne breakouts, mouth sores and insomnia.

I’m hitting my breaking point.

And that’s the mental game.  A lot of people say they could never do a marathon, but they really can.  It’s not about moving your body through it, it’s about moving your brain through it to get your body through.  And that’s what I need to remember.

Lately I’ve pulled out my finisher medals as a reminder what I can do.
I put myself on that course passing that mile 24 sign and I remember what it feels like and what I did to get through.  It helps.

Were close warriors!  If it looks like I need a boost, keep me movin on!

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Butts vs Boobs

I hate fundraising.  Hate it.
Between Girl Scouts, Band, Drum Corps and such, I’ve done my fair share.
In 2009 when MJ and I decided to do the marathon with Team In Training, we were required to raise $1800 each.  It sucked.  I still can’t believe we managed to do it.  When I decided to participate again with Team In Training in 2011, I just paid all the money myself so I wouldn’t have to ask for money again.

Well, now here’s it’s 2 years later and I have cancer.  All those fundraising speeches about raising the money “to find a cure” hit me so much harder now.  Now I truly get it.  It’s about time or not having it.  I pray every day for those guys in the lab coats.  I pray that one of them finds that thing that going to keep me alive for another year.

So I entered a 5k that’s raising money for colon cancer.
Something I noticed though is the lack of money going to this cause.  So far the entire campaign has raised just over $10,000, which is great, but if you look at the “Pink” campaign or at the money Team In Training raises, it’s nothing.  Those events bring in MILLIONS.  MILLIONS.  A single person will fundraise $10,000 for one event.  And it’s great that they bring in that kind of money.  But did you know the top 2 killer cancers bring in the least amount of money?  Lung and colon.  It’s true.  And it bugs me so much.
There’s a stigma around lung cancer.  That most of the people who have it deserve it because they probably smoked.  And while that’s true that they may have contributed to their disease, it doesn’t mean that people aren’t suffering.
And colon?  Well, I just think there’s a lack of information about it.  That and it’s easy to market boobs.  Save the ta ta’s is a great campaign.  Ass cancer doesn’t quite have the same marketing appeal.  But did you know that colon cancer cases in people under 50 have risen 40% in the last few years.  FOURTY PERCENT.  That’s scary.

Every dollar is important to me.  It could save my life.  It could save someone else from having to go through what I have.  If you can spare it, I would greatly appreciate it.

This is the link to my page:

Colon Cancer Alliance UNDY5000

You can also join my team and walk/run with us if you’d like!  We get to run in our underwear!  No fundraising necessary  but will be very welcomed.  Let me know if you need the password to join.

Thanks for considering.

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The Buptist

I have a funny little story to share.

Our church has been going through some transitions lately and while we have no intentions of leaving, we have always talked about exploring other religions.  So we’re taking this opportunity to check out a Buddhist Center.  We took the kids last week for a family introduction to “What is Buddhism”.  It was very interesting and I think we could all benefit and learn from Buddhist teachings.  A nice compliment to my current religion and beliefs.

This week the service was more adult oriented so Brian took the kids and MJ and I went for the meditation service.  I was a bit nervous about the whole meditation thing. I just don’t know how to quiet my mind sometimes. I know it’s something that requires much training and practice to be good at so it’s good for me to go and try this out.

We get to the center a few minutes before the start of the service.  The room is not very big.  I found a picture online so you can see how smal the space is:

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The row on the right side only had 2 chairs in each. Also, the chairs didn’t actually go back that far.  There was a space for people who wanted to sit on the floor.  There is also a space in front of these chairs before the alter where you can also sit on the floor.
There were 2 chairs in the same row left on the right side when we got in.  I think the only 2 seats left together, so we sat there.

There was a heavyset man sitting behind us.  He was alone in his row.
He was a heavy breather.

Here’s where I have to stop the story and try to explain something.
I have Misophonia.
What is that?  I’m sure you’re asking.
It is a rare sound disorder.  The name literally means “hatred of sound”.  Anyone that knows me knows I love music and I couldn’t possibly “hate” sound.  I don’t.  It’s just certain sounds that I hate.  I know we all have sounds that annoy us.  I do too.  This is not like that.  When I hear a trigger sound, it throws me into a fit of internal rage.  It’s bad.  I need the sound to stop and I need it to stop immediately. My trigger sounds, like most Misophonia suffers, tend to be mouth sounds.  Chewing, smacking, heavy breathing.  I sometimes can’t even eat with my kids.  They chew loud and talk with mouths full which results in smacking.  Makes me crazy.  If you snap gum around me?  I could cut you.
Wanna learn more?  Look it up or check out this webpage.  It has links and videos:

Do You Have Misophonia?

So you know where this is going, right?
The buddhist nun came out and started the service with a meditation session.
I sat up straight in my chair and made myself comfortable.  I closed my eyes.  Listening to her message of clearing the mind I tried to think of the sounds of the surf.  But all I could hear was the sucking sounds of Mr. McBreathy behind me.  I concentrated even harder but it just made the wind tunnel suck even louder.  And it wasn’t just that he breathed loudly he had some kind of lip smacking, guttural throat sound happening too.  It was a Misophonia nightmare.  I was screaming so loud in my head I was sure it was going to leak out and the nun would either kick me out or use me as some kind of horrible example of meditation.  I told myself there was a reason I was the one who was sitting in front of this hell and tried to work with it.  I tried to train my mind to block out the noise and be like a normal person.  I did have a few moments of clarity.  Maybe seconds.  The rest of the time I dug my fingernails into my arm and bit my lip as tears streamed down my face.  I would’ve rather had to hold a spider for that meditation.

Once it was over the nun lead us in a chat/song/prayer for world peace.  Oh, that’ll be nice!  Yes, let’s get the music going!
Um, yeah, dude can’t sing either.  And it’s not that he couldn’t sing, he just had a really creepy voice.  I don’t even know how to describe it.  He would drop words while he gasped a huge breathe of air and then come back in much louder than anyone else in the room.  Lips smacking between verses.  Arghh!  OK, at least this wasn’t quite as bad as the meditation?  Maybe?

Once the nun started the discussion I was pretty much gone.  I was crumpled in my seat wishing a plane would just hit the building.  By this point it was so loud in my ear I was convinced that he was not only doing it on purpose but that he had some kind of amazing technology that was amplifying the sound just to my ears.
Durring the discussion (kinda like the sermon), he started talking.  Repeating words or phrases that spoke to him.  He was the only one in the room doing this and it didn’t seem quite like a Buddhist thing to do.  More like a Southern Baptist.  So he’s a Buddhist Baptist?  A Buptist?

Poor MJ.  She just wanted to enjoy this.  About halfway through the discussion along with my fidgeting, nail digging and crying, she went into her purse and handed me the car key. I didn’t want to ruin this experience for her, but I was determined to get through this.  One of the reasons for being there is to learn how to clear your mind and I’m going to do that!  Yeah, right.  Besides, I didn’t want to offend the nun or bother anyone else by getting up to leave.  So I sat and concentrated on not crying or reaching back and jamming the car key down that guys throat.

Once the nun finished the lesson, she stated we would be finishing the service with another meditation.  The words barely left her mouth and I was up and out the door.  No way.  Not again. I just couldn’t do it.
I went in the hallway and looked at all the different Buddhas on the shelves and walls.  Once I calmed myself enough, I decided I would try and sneak in to the front and sit on the floor. Once I crept back in I realized I wouldn’t be able to do that without disturbing someone.  So I stood in the corner by the doorway.  I felt weird standing there while everyone was meditating so I knelt down on the floor.  The room was fairly quiet yet I swore I could still hear grizzly snort from the back of the room.
I would hear normal little noises every now and then.  Bt then I hear someone’s stomach growl and that made me laugh a little until my own bowls decided to betray me.

Here’s where I have to stop the story again and explain something else.
As most of you know, I have a colostomy.  His name is Chewbacca and he’s been a little talkative lately.  I’ve started eating more plant based foods and well, it makes Chewy speak.  You can’t control a stoma.  It goes when it goes and that includes wind.

Again, you know where this is going, right?
I had been clutching my side for most of the service knowing that it could happen at any time.  Putting pressure on my bag will sometimes muffle it enough so that no one notices.
As I was crouched down on that floor, the nun started to speak to bring everyone back from meditation, and as I started to sit up, my side unclenched…  I farted.
Awesome.
I swear I think the nun cracked a little smile.

I made my way back to my original chair next to MJ.  Let another little air bubble out.
OMG GET ME OUT OF HERE.  I just wanted to run to the car and scream.
Once the nun left, MJ and I just looked at each other and didn’t even have to say anything.
We skipped the reception they had afterwards, quickly grabbed our shoes and beelined for the car.  We got in and laughed.  She said she didn’t hear my fart, but it was her stomach that was growling.

Hopefully we’ll be allowed to come back.

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Soooo I’m gonna keep on bloging now

It’s my “blogaversary”!

It was one year ago today that I got “that call” and started this blog.  I can’t believe it’s been a year already.  And I’m still here kickin’ it!

I remember that phone call still.  I was standing in the living room looking out the window.  I was hoping for some kind of liver disease.  I really didn’t think it was cancer.
Once he dropped the C-bomb I couldn’t think straight.  It was like my brain severed from my body.  I remember still staring out the window listening to his voice start to sound like the adults on Peanuts specials.
He said he thought it was likely gastro-intestinal and that they would “just give me some chemo, maybe take it out and no problem.  Nothing to worry about.”  NOTHING TO WORRY ABOUT?  Knowing what I know now I so would’ve lost it on the guy.  I didn’t fully understand metastatic cancer at the time.  And now that I do, I know that any cancer that has spread to the liver is stage IV.  Nothing to worry about?  There is no stage V!
I guess in hindsight it was probably good that way.  Reading back at that first blog post I really wasn’t all that panicked.  Shocked?  Yes. But I at least had time for the whole stage IV thing to sink in.
It was weird having to call MJ.  I didn’t want to tell her over the phone but I couldn’t wait either.  I had to tell her right away.  I’m pretty sure I cried but I don’t remember.

So now here we are a year later.  It seems like yesterday some days and a million years ago on others.  Today it feels like yesterday.
I’m happy with my year.  I’m happy with the progress.
And look!  I have hair!

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Thank you all for your support this last year.  I don’t have the words to express how much it all means to me.  Thank you for the jokes, the funny pictures and videos, the warrior poses and the love.

I love you all and I’m gonna go and kick some more ass now.

I’m back!!!

I have been down, sick and miserable for about a month now.
It’s been weird.  Supposedly I’m getting better but started feeling worse.
I’ve been sluggish, weak, cold and depressed.  My nose keeps getting so chapped that it bleeds.  My face is so dry it’s cracking and I have mouth sores that make eating difficult.
I think the biggest factor was my hemoglobin levels.  I’ve been anemic for awhile but my levels dropped very low in the last month.  They’ve been keeping an eye on it but it wasn’t until the beginning of this week when I dropped to 7 that they decided I needed a transfusion.

I was kinda freaked out about getting it at first.  It’s just strange to think that someone else’s blood will be mixing in with your own.  I’ve heard stories about people getting heart transplants that all of a sudden have ou-of-the-blue cravings for food they never liked or started watching sports all of a sudden.  I was kinda worried about having some bizarre experience like that.  But more importantly I just wanted to start feeling better. So there was no doubt about going through with it.

I had the transfusion on Tuesday and was hoping I’d start feeling better right away.  I didn’t get much sleep the night before and they gave me Benadryl so I ended up just being tired and sluggish.
I caught up on my sleep that night so I thought Wednesday would be better.  It wasn’t.  I was still weak and tired.  It took everything I had to go with MJ to Sprouts to pick up a few groceries.  I carried the basket and it felt like a 100lb weight.
Looking forward to Thursday I woke up and still wasn’t any better.  I cried quite a bit.  I figured the hemoglobin must not have been the problem and was worried what the next step was going to have to be.  I didn’t go to my support group that day and that’s a big thing for me.  I love going to group and when I couldn’t muster the strength to go it scared me.  You can’t help but wonder “is this the turning point?”  Is this where I start to be very sick?  But it just didn’t make sense since almost all of my tumors are gone.

And today was a new day.
Today I opened my eyes and felt like getting out of bed.  I don’t know if there are words to describe the kind of relief I’m feeling.  Mentally and physically.  It’s like that feeling you have driving on a sunny day, window rolled down, favorite song on the radio, and you fly your hand through the air as you move along down the road without a care in the world.

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That’s today for me.

It’s such a helpless feeling when you’re that down and so amazing to be free from it!
All the little tasks that became major chores I can do today without struggle.  It’s like someone untied me.

MJ has been a trooper trying to keep my strength and spirits up.  And she’s been beyond a sport picking up my slack.  I can’t thank her enough for that.  Go ahead and tell her how awesome she is because she deserves it.

I’m hoping this isn’t a fluke and will last now.  I feel like walking around.  I even feel like getting to the gym to swim some laps!
I’ll let you know how that goes.

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So ANGRY today.

Yup. I’m pissed.

And you should be too.

When I first started this cancer journey and went to oncologist appointments and to the infusion centers, I was almost always the youngest person in the room. Doctors would comment about how young I was to be there. Especially when I went to get a colonoscopy.
Over the last year I’ve noticed more younger people coming and going. Not all cancer patients use the infusion center, but it still does mean they are sick with something.
But this week was the worst. On Monday in the oncologist office, I only saw 3 other people, but they were all my age or younger. Tuesday in the infusion center, there was 1 very old woman, one other woman that was probably in her 50’s and the rest of us (there were FIVE others) were my age or younger.

What is happing???

WE ARE TOO YOUNG FOR THIS SHIT.

We should be out living our lives!

Cancer cases are on the rise, especially in younger adults.
There are many articles, here are 2 to check out:

New York Times Article

Dana-Farber Article

We need to take a good look at ourselves and ask why? I know that genetics play a role in all of this, but I do believe some of it is preventable too. Including my own cancer. I know what I put into my body and I’m not completely shocked it happened. But did I ever tell myself it wouldn’t happen to me? Sure I did. And I’m sure you tell yourself the same thing. And I really hope it doesn’t happen to you. I couldn’t wish this one anyone, which is why I’m speaking up and hoping that you’ll listen.
The one common factor I see in almost all of the new people coming in? They’re usually overweight. Obesity is sickness. Nothing good comes of it.
I admit I know what horrible things I put in my body, but I still didn’t ever imagine it would lead to this. But after reading more and learning more about what certain things do to our bodies? I can’t believe I didn’t get sick sooner.

I want you all to please consider what you do yourself.
Do you still smoke? Seriously, knock that shit off right now. It’s not just lung cancer you risk. There are SEVENTEEN cancers that smoking directly relates to. Plus, even if you stop smoking now, doesn’t mean you won’t get sick years from now. Doesn’t that kinda scare you?
Fast food? I admit that I am a fast food junkie. I used to eat it frequently and in gross amounts. And even now having what I have and knowing what I know, I still crave that crap. And that’s what it is… crap. It’s not food. I’m not saying never have it, but treat it as you would any other treat you would allow yourself to have.
Alcohol? We all know the dangers. But know how hard it is on your body. I punished myself for years with excessive drinking. It took a major toll on my body and it’s not surprising that it is one of the leading causes of my cancer.

Let’s just talk about our diets in general. Do you drink soda? Oh I did. Love it. Still do. AND I still crave it and drink it. And like a drug addict I even try and sneak it sometimes. Although I usually get caught. Wanna know something? Soda is the devil. It’s the sugar mainly. Sugar is evil. ALL SUGAR IS EVIL. Don’t believe me? Watch these videos and tell me you don’t have a different opinion of anything sweet.

If you don’t have time to watch the first one, please take the time to at least watch the second.

When they were talking about that ban on big sodas in NYC I thought Bloomberg had lost his frickin mind, but soda processes in your liver the same way alcohol does. Same effects on your body without the buzz. Alcohol is regulated, maybe sodas should be too. Did you know they put salt in sodas to make you more thirsty so you’ll want to drink more? Evil, evil stuff.

Processed foods can not be good for us! And I think they contribute to the amount of sickness were having. Especially to younger people. Would you let your kid huff out of some random spray can? Probably not. But take a look at the chemicals on the side of the box of what you’re making for dinner. Are there things on there you can’t even pronounce?
We are too young to be this sick!!!
If you have an open mind about this and want to learn more, check out some of these documentaries:

I’m begging you all to please take a good look at your life. Are you putting healthy things into your body? Are you putting healthy things into your children’s bodies? Are you even aware of what is healthy or not? I wasn’t. Think having a glass of juice is really healthy for breakfast? Think again.

And while exercise is important, I think the core of our issues has to do with the chemicals we feed ourselves. If we feel better, we’ll be more inclined to move. I know when I feel good I’m more active.

Please share this post. Even if you don’t believe it yourself, someone might. This is coming from someone who is living the nightmare. Someone who is seeing more and more young people having to go through this hell with me. And it is hell. I try to be as positive as I can through this process, but it has robbed me of my life. And I’m pissed about it! As much as I try to share I don’t know if it’s enough. I don’t know if people can really understand.
This is a documentary from a young cancer survivor that can maybe put things in more perspective:

And it doesn’t just effect my life, it effects those that I love. My family. My friends. How has my sickness effected you? Has it made you think or be sad or question why? Think about how my wife feels every day. It has robbed her life too. It’s a second job that neither one of us wanted. Or our kids.

About 4 years ago I started to clean up my life. I quit smoking and tried eating healthier. Started to avoid chemicals. I completed two marathons and lost 50lbs.
And now?
I can’t get up the stairs today without being out of breath. I wanted to start training again and it takes everything I have to just go to the gym to just sit in the jacuzzi. I’m tired, I’m weak, my face is broken out, I have sores in my mouth and oh, yeah, there’s still that chance I can die young. It’s not a good feeling wondering if you’re going to outlive your cat.
I’m frustrated. I’m pissed. I’m ANGRY.
There are so many things I want to do. So many things that will be such a challenge now if I’ll be able to do at all. I was nervous about approaching 40 and now that I’m almost there in the condition I am, 40 is YOUNG. I have so much life I want to live yet.
I WANT MY LIFE BACK.

Is this what you want for yourself?
Is this what you want for your kids?

Be angry with me that this is happening!
Share this with the ones you love.
Let’s get educated…

Before it’s too late.

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