A Little Lighter On One Side

There have been a number of different analogies to describe tonight’s blog.  It’s as if I am in a war.  It’s like weeds in the garden.  It’s like a roller coaster.

I kind of like that last one.  The roller coaster.  Growing up I always hated roller coasters.  Even if all the other kids were going on them, I’d sit off towards the exit and wait for them to be done.  Even if the cute girl was holding my hand, guiding me down the waiting line, and sitting next to me in the roller coaster car, I’d still get up at the last-minute and say, “Nope.  Can’t do it.”  This was then followed by the awkward walk out the exit lane by myself.  (This really happened.  Great Escape.  Steamin’ Demon roller coaster)

Finally, one day, on the ride and about to wave down someone to let me out, a good friend said, “Just get on the damn thing.  Stop thinking about it.” and I did.  The anxiety, the heart beating, everything was still there but I kept in the seat.  Don’t exactly know why but I just accepted what was happening and thought, “screw it”.  I will never forget that ride.  A rainy day at Great Escape in upstate NY on The Comet started a fun, memorable day at the park.

I want to expand on the roller coaster analogy.  What’s happening is more than anxiety in the waiting line, the ups and downs of the ride, and the walk through the exit line.

cancer is like the worst theme park you’ve ever visited.

Flash back about a year to an interesting conversation I had towards the end of one of my one-on-ones with a staff member.  He was looking up something and I was checking out Twitter.  I said out loud, “So one of the classes my undergraduate advisor teaches just put out a game for IPhones.”  He chuckled and said very surprisingly intently, “What’s the name of it?”.  I passed it along and he downloaded the app.  Actually gave it a five star review.

The webpage it linked to was informative and centered on college students.  I browsed it, took a look at the videos, and then really didn’t think anything of it.

Things get hazy from here through December 2012…

I’ve been wracking my brain to figure out when exactly this started.  Was it this app?  Was it some other moment?  I do know that around December 2012 I googled to get some answers.  Google pretty much told me that everything was cool.  Not too much to be worried about.  I went back to the website from that app.  Nothing stood out as a red flag.  I also knew around that point that, “Hey, you’re getting a new job soon.  Just ask the new doc when you get the new health insurance.”

April 8, 2013

I had reconnected with a doctor that I had seen growing up.  We shared some old allergy war stories.  He did his full physical, gave me a pat on the arm, and said, “Well, you’re in good shape.  Sure you could lose a few pounds but all in all, you’re doing good.  Any other questions?”

Now what follows is going to venture into some spicy territory.  Those who know me probably are thinking, “Jeff usually don’t involved in the spicy language or else his face turns very very red…”  Let’s just say that April 8th changed all that.

Last chance….

Any other questions….  A beat passed.

I say, “Actually I do Doc.  I’m actually hoping you could take a look at something.  One of my testicles is bigger than the other?”

He does his thing down there.  And I will never forget this reaction.  Never.

He says, “Ok you can get dressed” and wheels his chair to the other side of the room.  The purple gloves snap as he takes them off.  He rubs his forehead and says, “Yea, we’re going to need to put this to the front of the line.”

Front of the line.  Welcome to the theme park.  The turnstile mechanically circles.  The counter on the far side of the machine ticks up by one.

That night was supposed to be a great night.  Michigan was in the big dance playing for the national championship.  Instead of pre-gaming, I was in the local hospital getting a sonogram done.  I thought wearing my Michigan sweatshirt to the appointment would bring me good luck.  But I could see it in the technician’s eyes.  He couldn’t really say anything about what was on the screen but when you spend 3/4 of the appointment on one particular area, you know something just ain’t right.

They asked me to stick around for a few minutes.  The waiting line for the roller coaster had begun.  Railings on both sides.  People behind you.  No where to go but forward.

That night I left without any answers.  No doctors around.  No one could read the pictures until the morning.  Your doctor will call you.

What do you do to pass the time in a waiting line?  You turn to the people around you.

My family, all of them, have been nothing short of superstars throughout this whole thing.  We’re going to come back to this in a few minutes.  But that night, I went to my parents house, told them about what was going on, and proceeded to watch the basketball game.  They did their best to keep my mind off things.  But it was just adding up in a not so good direction.

April 9, 2013

Phone rings and the doc tells me that there’s something there but he wants another doctor to take a look at it.  He says, “I’m going to send you to my urologist.  Good guy.  Knowledgeable.”

“Folks if you will please step this way.  Fill all the lines to get into the cars.  Not everyone can have the front seat.  Family and friends, please step around to the other side to wait for your passenger.”  

The urologist does his thing.  Gives me almost the exact same pat on the arm.  And says, “Well, it feels like we’ve got to do something.  How does tomorrow work for you?”  Whoa whoa whoa doc.  Let’s talk about this something.  He tells me it could be a variety of things.  At the end of all these options is the same thing.  No biopsy.  No exploratory stuff.  We’re just going to do something right now.

Testicular cancer.  Most likely Jeff, you have some form of testicular cancer.  Two types to talk about.  Both are highly treatable but one is easier to deal with.  Both can spread.  Don’t want to cross the path of doing further treatment until we know what we’re dealing with.

“Tomorrow” didn’t end up being an option.

“Please make sure that restraint is fully down and in a locked position.  Please keep all hands and arms inside the vehicle at all times.  Your ride will being momentarily.”  

April 12, 2013

An afternoon surgery matched up well with my brother, sister, and some family friends travelling into town to join the other superstars.

Pounds were shed quickly that afternoon.  The procedure I had is called an orchiectomy.  It’s where they remove one of your testicles and most of the cord that goes along with it.

The air brakes release as the tow chain clicks and grabs onto the first car.  A ride attendant is heard saying, “Good luck”.  The ride begins.

April 19, 2013

Clickety clack.  Clickety Clack.  Up the incline you go.  Higher and higher.  But then… silence.  You hear nothing.  The silence is deafening for a brief moment.  The coaster starts to go over the edge.

Results immediately following the surgery showed a mass was there.  But the thing needed to be sent off for a full pathology report.  This doc likes to give the results in person at your post-surgery exam.

On April 19, 2013, I learned that I have Stage 1 Seminoma Testicular cancer.  The “good” kind.  Pathology report showed that the cancer seemed to be confined to the testicle and there were no signs of spreading into the cord.

Folks get your damn hands up.  This is a roller coaster.  WHHHHOOOOOO!!!!!  Not everyone is as excited as you are.  Some look at you with disgust.  Others with care.  Some just close their eyes and see nothing at all.

My superstar family and I went into this appointment with the expectation of cancer of some kind.  Everything was pointing to that.  But, for some very strange, odd, morbid reason, I was happy with this news.

The steps from there include scans to confirm no signs of spreading.  I was going to get my first CAT scan.  Sure, I maybe hoped it would happen following a heroic act or some awesome sports injury, but, ok, we’ll take cancer as a reason.

April 23, 2013

Your stomach drops as you reach the bottom of the hill.  Zoom!  Back up to the top of a hill in the track.  You are flying but for a second.  Literally you have become Superman for a fleeting moment.  Momentum has got control as you start to drop down the other side.

I get a call in the middle of the day from my doctor.  The CAT scan from the Monday before had good news and bad news.

Momentum is a bitch.  Momentum ruins that Superman moment.  

He says to me, “Jeff, there are no signs of the cancer spreading to the usual areas where this cancer normally goes.  However, and I don’t even look at this part of the body when reviewing results, there’s something on your back that concerns me.  I want to get a closer look at it.  I’ve got a MRI scheduled for you on Friday.  It should show more.”

But it’s momentum that keeps you on the track.  Keeps you moving forward.  You are not in control.  (Ladies and) Gentlemen, we just put Sir Issac Newton is in the driver seat.

(It’s a line from Apollo 13)

April 26, 2013

Wow, this restraint does not allow you to go anywhere.  Dang it’s tight.  Can’t really move too much.  Tough to actually… get a…. deep breath in there.  Not a lot of give…

I lived in NYC for a very brief time.  Very brief.  However during that time, I quickly got over any issues I had with personal space.  100 New Yorkers in a space designed for 10 makes you quickly get over some things.

But a MRI machine takes things to a whole new level.  I survived it but, wow, I was very happy to do a modified version of the hokey pokey dance at the end of the procedure.  Everything was shaken.  The MRI tech didn’t want to dance with me.  I know…. her loss.

April 30, 2013

Up and down.  Up and down.  Loopdy-loop.   Ohhhhhh cooooorrrrrkkkkksccccreeewwwww.   When does the ride stop?  The brakes start to be applied as soon as you turn the corner to see the loading area.  More people have gathered to get on the ride.  Some high five you as you go by.  Others can’t even bare to look at the car as it goes by.  

The doctor calls again.  “Jeff, MRI results show good news.  That spot on your back is a hemangioma, a collection of blood vessels.  I can say with good confidence that nothing on the scans show sign of the cancer spreading.”

The car jolts to a stop.  “Ladies and gentlemen, thank you for riding.  Remember to take all items with you from the car.  Please exit to your right and enjoy your day here at the theme park.”

May 1, 2013

Hey!  Look!  There’s another roller coaster over here at this theme park!  And, wow, it has no line.  I’m headed right to the front.

The next part in addressing this cancer was to now be referred to a cancer specialist.  Here’s part of our opening conversation:

Doc: Well none of us specialize in this group.  Each has experience dealing with different types of cancer and I have dealt with some serious testicular cancers before but with you, things look good.  Other than this spot on your lung, you look to be in good shape.
Me and my mom: (Almost in unison) Spot on the lung?

There are different types of roller coasters.  Most are old school clickety clack ones with the chain that brings you up the ramp.  Folks, we just jumped on board those ones that take you from 0 to 80 in two seconds.  You don’t get a warning or anything.  They strap you down and you just GGGGGOOOOOOOOO!

The pathology report had shown that there is possibly a spot on my lung that could be something, could be nothing.  At this time, it’s very small.  Not 100% sure it’s a problem.  Three out of the four doctors I’ve spoken with about it say, it’s probably nothing.  But this doc isn’t as positive.

At this appointment, and at subsequent second opinion appointments I was given three options.

1) Radiation
2) Chemo
3)Do nothing

The stats I’m looking at are that this cancer has a 99% treatment rate.  30 years ago, this type of cancer was a death sentence.

If I was to do nothing, there’s a 20% chance that the cancer could come back somewhere in my body.  Usually, it forms first in the lymph nodes in the back or stomach area.

Chemo or radiation would knock the chance of recurrence down to 4%.

Thankfully, I didn’t have to make a decision right there.  I had time to do meet with other doctors at the practice and even go to another cancer center to get a second opinion.

May 8, 2013

Radiation doc was up first.  Young guy.  Extremely supportive.  Some of the best bedside manner I got out of any doctor.  Here’s a snippet from the beginning of that conversation:

Radiation Doc: Jeff, listen.  I’m going to do the full workup.  Answer all your questions.  Explain to you all about this option.  But we’re going to skip to the end of this conversation.  Get out of my office.  Go get the chemo.  This stuff, while it helps tons of people, is not for you.  It’s totally your choice but if I were in your shoes, knowing what I know, I’d be down the hall starting the chemo process.

And sure enough, we spent the most time talking this guy’s ear off about my situation.  Answered every last question.  Probably even the ones that were answered twice.  Best part was, he said, “And by the way, you’re going to be ok.”  My superstar family had been saying this from the beginning.  Friends and other family who knew had said this as well.  Don’t know if I really let myself believe it until this doc.

My main oncologist was also handling chemotherapy and after both discussions, it looked like things were heading in that direction.

We thank you for riding today and hope you enjoyed it.  Please follow the path to your left.  It’s going to take a while to get back to the park but you’ll find the end eventually.

May 24, 2013.

Second opinion day.

Dana Farber

Boston

Chemo.  Chemo.  Chemo.  My mind had been set.  That was the direction.  Bring it.

Dana Farber doc: Jeff, why the heck are you focusing on the 20% chance of recurrence?  Focus on the 80% chance that everything will be ok!  I advise my patents to just observe.
Me: But that spot on my lung?
Doc: That’s probably nothing to be worried about.  Rarely does it go there.  I think you should just skip the drugs and get back to life.

You can see it off in the distance.  The biggest roller coaster of them all.  We’re talking peaks that go above the clouds and valleys that dive deep into the ground.    Every person in the park knows it’s there and at some point, will have to get in line for it.  Parts of it are so high and so low that you can’t really see the whole thing.  

It hit me right there that, treatment or not, there’s going to be an observation point in my future.  My thoughts were, do I want to gamble with 20% or 4%.  I absolutely suck at gambling.  4% sounds like the plan.

May 31, 2013

Now I know why they call them vomit comets.

In prepping for the chemo treatment, the doctors and nurses said, “In your case, you’re only going to get this one time big, whopping dose.  Most people get three or more smaller doses.  And we actually don’t exactly know how your body will react.  You might lose your hair.  You might not.  You might feel sick.  But you’re one and done.  You’ll be fine!”

Chemo is like the worst hangover you’ve ever experienced without the headache or funny stories from the night before.  (Now granted, I say this knowing I only had one dose.  I am, by no means, an expert on the topic.  My experience.)

Present day

“Park guests, make sure to check out the other parts of the park.  We’ve got miles of paved pathway so make sure to stay off the grass.  And, as always, pick up a park map to see about other attractions and shows that could be part of your amazing experience here at….”

The reason I think cancer is like a theme park is that this whole four months hasn’t just been one type of experience.  It hasn’t been one roller coaster.

It’s been multiple ups and downs.  Multiple conversations.  Multiple different thoughts, ideas, and moments.

Some other thoughts about this cancer experience:

The little “c”

You may have noticed something in this blog.  It’s a very small thing however, very intentional.  I accept the fact that I have gone through this but I don’t really feel like I’ve had Cancer.  It feels weird for me to put the big “C” in front of the word when describing it’s connection to me.  Some of my family and friends are currently going through their own cancer battle and, in comparison, I’ve gotten off real easy.  They talk of multiple treatments, horrible complications, and much bigger reactions to the treatment.  Me?  I got off with some fogginess and queasiness in my stomach.  They have lost their hair.  They have ended up in the hospital.   They have been hit so much harder.  It’s my feeling, and I know it’s weird, but there are definitely times that I don’t feel worthy to be counted amongst the survivors who’ve struggled through so many more ups and downs.  I’ve got cancer with the little “c”.

This little “c” will never change though my support of these family and friends, nor will it change my support of various cancer outreach efforts and support groups.

A little lighter on one side

This same professor who was guiding the class developing the Testicular Cancer campaign, was also a professor who exposed me to the positive uses of humor.  Scientifically, humor is a tremendous stress and anxiety reducer when used appropriately.

A coworker said, “Jeff, I’m going to be there to support you and send positive thoughts your way.  You just need to let me know when we can start with the jokes because this is a gold mine of material”.  Others have also said similar comments so without further ado…

I officially give notice that all “one ball” jokes are allowed and welcome.

Do I call?

I’ve wanted to share this with people for a long time.  But it’s not exactly a topic you call up a friend or colleague and say, “Hey, How ya doing?  Great!  Well, I just wanted to let you know that I’ve got some news.  I’ve got cancer.”

Going to talk in a few seconds about the support I received but I just wanted to point out that, with many of you, I didn’t know how to share this whole experience.  It’s not because I didn’t want to.  It’s because I really didn’t know how.

Shifting gears to thank some people:

Mom and Dad

They are the leaders of the superstar team.  They are the Nick Fury’s of this superhero lineup.  My Mom has been there every step of the way.  Far beyond the medical expertise that she brings to the table, she also has been my notetaker, my sounding board, and my kick in the pants to stay standing.  My Dad has been the guy who say in five minutes what would take volumes of books to explain.  His quick wit and stories have been unbelieveably appreciated because we don’t have to sit there and sulk about some part of this experience.  And then after this amazingly smart quip, it’s a smooth transition into talking about something completely different.

Together they have been amazing.

I came back to Troy to help them out.  It’s funny how God works sometimes.  Turns out I really came home so they could help me out.

I love both of you very much.

Chris and Stacy

Whether from the other side of the country or standing right next to me, i can’t thank these two enough for their support.  My brother many times throughout this experience said something along the lines of, “I’m a betting man and I’m betting that everything is going to be fine”.  I doubted him along the way but he always stayed positive and true to that sentiment.

The other day he sent me a “F**k cancer” gift.  I had no idea what the heck this could be but he said he wanted me to open it over skype to see my reaction.

photoSon of a gun outdid himself.  In case you can’t see it on your computer, the image is a signed Lions jersey from Ndamukong Suh.  Suh is a beast on the field.  A guy who runs ahead with full steam and plows down a lot of players in his way.  Don’t know if it was for that reason they picked this player, but immediately when I saw this gift, I thought more about trucking forward with all my might.

The signature says, “Kick cancers a$$”  Will do sir.  Will do.

Much love to both Chris and Stacy

Amy

Little does she know that the question I ask often to my parents is “Is Amy coming home this weekend?”  Due to work and other craziness that has popped up, I haven’t hung out with her too much but that will change.  Amy has been the workhorse throughout all of this.  She’s the one throughout this experience that has been lifting this, or clearing that.  She has worked extremely hard to keep balance in the house and she’s worked hard to keep me comfortable.  She even gave me a new nickname, “Chemo-sabe”.  Much love to Amy.

Other family

My entire family has been a tremendous support.  From aunts and uncles who have reached out with positive thoughts, to extended family who have been nothing but kind and supportive.  But two cousins, in particular, have stood out amongst others.

One got the brunt of the tough conversation because he had been through a lot of this stuff with his own cancer story.  From funny facts to brutal honesty, he was only a phone call or text away to talk through the really tough questions.  I can’t thank him enough for the resources and positive, motivating thoughts that helped at the lowest times.

And my other cousin who was in the middle of a tough cancer experience who I only spoke with briefly but answered questions that got me through the chemo part of the process.  She handled me with both great medical knowledge and supportive thoughts.  Her best though was the fact that she found no problem with a question that I was really nervous to ask anyone.  Get ready for this “I feel like a five-year old” question- does the chemo hurt.  Without hesitation or laughter, she gave me an honest no followed by some great insight.

Friends (This includes some great coworkers, colleagues, and extended connections)

From late night phone calls to chats about what choices to make in my treatment, I appreciate all the support from my friends.  I am truly blessed to have people across the country (I’m looking at you too Quincy, IL!) who are sending supportive thoughts and prayers my way.  I’m lucky to have a lot of people who, just for a moment, think to help me out.  I will be looking to somehow say thanks in some small way in the future.

And to those friends who now know what’s going on, I say in advance, THANK YOU.  Even if we don’t talk about it, I just appreciate you taking the time to read this blog.  But don’t hesitate calling or texting.

Let the jokes begin!!!

Aug 8, 2013

I see so many people I know here.  I saw an old friend in a line for roller coaster we got on when we first arrived.  I saw another friend hanging out with her family near the Tea Cup ride.  I waved to a few of them.  Chatted with others.  I helped one up off the ground after he slipped on an ice cream cone.  But it’s time for me to find a new ride.  Let’s go get in line.

Today I had my first follow up scan.  The gameplan from here is scans every six months along with some various chest x-rays.  I have to wait until Tuesday for the results.

I was free to walk around for a while.  Things kinda felt normal.   But now it’s back in line.

Hopefully I don’t have to get on the ride.  Hopefully I can do what I used to do and just hop over the car and head for the exit.

_________________________________________________________________

Earlier I mentioned the organization that my professor and her students started to raise awareness for Testicular Cancer.  Their group is called Check Yo Nutz and their website can be found here.  The app that they developed is available on the Apple App Store and Google Play for free!  Click here for more information.

Gentlemen- Regular self exams are highly recommended.  You’re down there most days in the shower anyway?  Take a few seconds and Check Yo Nutz!

If you or someone you know has questions or concerns about testicular cancer, you’re first step is to talk with your doctor.  Various websites and support groups are out there with more information but it all boils down to talking with your doctor.  Don’t procrastinate the discussion.

If you’d like more information on testicular cancer, head to the American Cancer Society’s Testicular Cancer website here

________________________________________________________________

Thanks for reading:-)

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4 Responses to “A Little Lighter On One Side”

  1. Andrea Saccucci Says:

    Perfect analogy and very well written. You do have an amazing family and I am very glad that you have made it through with such a positive attitude.

    Hopefully the only roller coasters you will be from now on…will be an actual roller coaster 🙂

  2. bicejr Says:

    Even with your sense of humor, I know it took a lot to share this, Jeff. Glad things are in the clear and I’ll add my thoughts and energy for that to continue!! Hopefully see you at NEACUHO soon!

    • jeffspain Says:

      Thanks Gary! Looking forward to getting back involved in NEACUHO! Hope all is well out there! Good luck with opening and training!

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