BriefFriday -3/15/13

…And so it begins.  The fundraisers! 

This week has been nothing but preparation for the weekend.  We will be at Lucky Harley-Davidson tomorrow beginning at 10am.  The ride starts at noon.  Scott called me today and sounded like he was surrounded by candy instead of Fat Boys!  Apparently over 4,900 views were logged for our commercial, 54 Chapters have contacted him, 10 local restaurants have offered to donate for the Soup Sampler, 3 stylists will be onsite to shave heads in support of LLS, AND…riders from Decatur will be on their way up bright and early - one sporting Greyson’s side car!

Sometime later, after we got done raising our voices at each other in excitement, I received a text from Scotty which read:  We just got $100 bill donated & the man would not give his name!”  Thank you, mystery man.  And thank you, Scott for ALL you have done to make this weekend successful.  We are looking very forward to the entire day!

Sunday:   Party on, Wayne.  Party on, Garth.  No camera, no admissions, no worries.  When it’s all for a fantastic cause…what happens at O’s, stays at O’s.  Period.  End of story.  (And there will be NO stories, people!  None!  Never you mind the St. Patty’s Day apparel…never.you.mind.)

FORT WAYNE total as we head into week 5:  $46,875!!

Let me say that again…as we head into WEEK 5!  Yes, for those of you who are quick at math that does in fact mean we are HALF WAY through this entire campaign.  Only 5 weeks remaining to hit our $100k goal.   You can see by the above number for the six of us that it’s gonna take the proverbial village to reach it by April 26^th.  But I’m not stopping until we do.  There’s no turning back now. 

Thank you to everyone who has donated.  I truly appreciate it as well as the continued support in many other ways you have been providing.  It keeps me going.

Slainte!  Wish me luck.

42 Days.

 

 

 

 

Almost the Right Kind of Joint

March 14.
A bone marrow biopsy is just that – a biopsy of your bone.  I hadn’t bothered to Google anything on the procedure, and it’s probably a good thing I didn’t prior to getting in my car and driving there under my own free will, unforced. 

Let me tell you a little something about Chesterton, IN which I had no prior knowledge of, having lived there only 3 short months:  it is a quaint sort of place.  And by quaint, I mean backwoods living under the auspices of munchkins.  Chesterton is home to the Annual Wizard of Oz festival.  Straight up.  And yes, under the heading of I’m going totally cliché here just because we’re talking all things flying monkey creepy already, I was a long way from home and there were no red shoes in sight.  All I wanted was to be back home in Ohio, living a normal cancer-free life, and forget that this nightmare had been taking place.

I arrived at the location to have my first of many bone marrow biopsies, and it was nothing like I had envisioned.  The building was a completely stand-alone brick house-like complex out in the middle of nowhere directly off Highway 49.  It was not inviting; it was not professional.  It was scary before I even went inside.  Upon entering, I was greeted by someone that I’m pretty sure did not have official U.S. residency established but was warm and friendly nonetheless.  The entry smelled of vanilla and contained two 1960’s mismatched plaid couches.  (Not kidding), incense was burning on the end tables between them.  Perfect.

The “Doctor” walked out and all I can remember of her is that her first name was Mary, she was tall and thin with curly hair, and had clearly decorated the place herself.  She led me back into the room where the biopsy would take place and explained a bit about it.  I had already made up my mind that “whatever it takes” was my motto henceforth; I would do whatever was necessary, whatever was in my power to get through this ordeal.  I had to get rid of this cancer, because if I didn’t, my daughter would not only be motherless, she wouldn’t even remember anything about her Mom.  She’d have no memories, no recollections of how much I loved her.  That thought surely had to be more painful than any physical pain I would undergo…

It hurt.  You cannot anesthetize a bone, only the skin where the drill enters.  I lay down on my left side; she numbed my right hip, waited a few minutes, then came back in, inserted the drill and started grinding.  Literally, it’s just twist and twist and twist until that thing hits the bone and then whoop!  Pop it back with a piece of bone as a souvenir.  (Thanks for visiting, do not EVER come here again you stupid, unwanted visitor.) 

All that anger aside, here’s what else I remember about my first biopsy:  I didn’t cry in pain, but I had a tear running slowly down my left cheek, the one closest to the table.  I remember that tear very specifically.  It was one not so much of writhing physical pain, but emotional “what am I going to do?” pain.  There is a definite difference, and we all know it well at one point or another in our lives.

After leaving that day, I went back to my apartment and did nothing.  I watched the world pass by out my window, along with the hands on the clock until it was time to go pick up Liv from the Montessori school. 

I waited for her, and I waited anxiously for those results.

43 Days.

 

Who Knew?

March 13.
I am completely beholden with not only the continued donations which arrive daily, but the incoming messages of personal stories as well.  These stories are not just a “Hey, I’ve heard of someone who had cancer once,” these are intimate descriptions of the heart-rending situations people have undergone – or, are in the midst of now.  I usually shake my head and read through watery eyes, as it simultaneously resonates on a core emotional level while stirring up my frustration and disbelief.

The stories also arrive from the least likely acquaintances, customers, or sometimes even total strangers.  The correlation between this and the answer to “who gets cancer” is not lost on me or anyone else, I’m sure.  We never know.  We only know it never seems right or adds up that THIS person would be the one to receive the news and experience the subsequent life-altering treatments, emotions, and changed relationships.

I lost my nephew to testicular cancer last year, he was 27 and one of my best friends just lost another best friend to leukemia at 52 just a month ago. I admire your willingness to put your story out there and fight the cause. I saw a commercial about not being quiet. Very cool stuff, still one in three, still too many. Good luck with the fund raising Beth.   

As with others who have written you their stories, I lost my very favorite uncle and my mother's only brother to Hodgkins Lymphoma when he was only 32.  I was 8 and his sons were only 6 and 4.  He was such a handsome, kind man who I had such a crush on.  As the only girl with his two sons and four brothers of my own, he treated me like a princess.  I remember so vividly when he came to our house and the adults were talking about his treatment.  I of course had no clue how serious it all was, but I remember him unbuttoning his shirt and showing everyone the red dye where he was marked for his radiation treatments.  It wasn't long after that he was gone.  I remember at the funeral being mad at my cousins (who have grown up to be incredible men and handsome like their father) because they weren't crying. That's how young they were.  There are so many things from my childhood that I don't remember, but this time of my life is very vivid in my mind and I am honored to help in your quest, especially knowing how far treatments for Hodgkins have come since he lost his battle.

We know life is fragile.  We know life sometimes just does not make sense.  But we also know that for the circumstances we abhor and fear yet have some – any – control over, it makes them much more tolerable and much less painful.

Cancer is something we have a say in; it is something to which we can say NO MORE.  We may not know all the memories, but we know this. 

It’s time to take back control.

44 Days.

 

 

Vistas

March 12.
It’s funny, the memories each of us has.  You can take the exact same situation or story and end up with two or three or four different renditions of what really happened, depending on who is recounting the tale. 

Sunday afternoon was beautiful, so I dropped Liv off at her boyfriend’s house and zipped over to my buddy’s to meet him for a run (well, he was on a bike – sissy).  As I was driving, it dawned on me that I’ve not yet met Joe Cool’s Dad, so I say: “Hey, I think I’ll pop in and introduce myself to Ryan’s Dad, sweetie.” 

You would think I just told her we were moving to Alaska where there is an anti-iPhone policy in effect. 

She, after picking up her jaw and un-rolling her eyes, said, “Mom…NO.  Do you even REMEMBER when I was in 8^th grade and you were going on a run and …”

Do I remember when I was going on a run 2 years ago?  Oh.  Sure.  I can absolutely remember that run.  The one through the TWILIGHT ZONE neighborhood. 

Anyway, the point is perspective.  I somehow embarrassed her because I was decked out in running attire and actually spoke to one of her teachers that day (to retrieve her cell phone, mind you, that they had “no right” to confiscate.  do do do do do do do do…) 

We all view things differently, including the people in our lives who have had cancer.  We view the people differently, the circumstances differently, and the feelings differently.  But we do NOT view a negative outcome any differently.  On that front, we are united.  It sucks.  It’s unfair.  And it has to stop. 

I posted a video earlier this morning so you guys can all meet Greyson.  Here is the link:   

http://www.youtube.com/watch?v=L3OUotu3B98&feature=youtu.be

45 Days.

In Honor of Someday

March 11.
After I told Jen that yes, I will campaign on behalf of LLS, she immediately inundated me with paperwork.  Disclosures, disclaimers, addresses, lingo to use (which I totally changed), etc., we all pretty much had to sign our names a zillion times in agreement.  There was also my personal favorite check box entitled: “I Don’t Care How Many Horrible Pictures or Videos Are Released These Next 10 Weeks, They Will ALL Still Be Used for the Secondary Purpose of Allowing Your Shallow Friends to Make Fun of You More Than Usual.”

There was also an entire Bio which we had to complete.  One question read as follows:  Do you have a personal honoree and if so, what is their story?

By now you all know I can talk forever, so to cram someone’s story into 3 sentences is almost an impossibility for me; picking just one honoree was even more difficult.  So of course, I didn’t.  I listed 5.

The first two were my fellow Bone Marrow Transplant recipients, Kurt and Jeff.  Kurt was in the room to my right; Jeff was in the room to my left.  The proverbial rose between two thorns, and I reminded them of this daily.  It’s amazing how closely and instantly you can bond with another human being in the midst of crisis, especially as you fight the same fight.  They both fought hard and courageously; and they both lost the battle.

I also listed my Bone Marrow Donor, Beth Robison.  What an amazing person to give so selflessly and be used as an instrument to save a complete stranger’s life.  A donor, in my opinion, epitomizes the fact that we are all in this together – life and its challenges.

Greyson.  He is my special little honoree, as he is all of ours who are in this campaign together.  I love his laugh, I love his smile, and I love that he is fighting leukemia like a champ at age 4.

There was one final person on my honoree list.  His name is Donnie Begue.  He too, was from the village of Minerva.  We grew up together, mostly in church.  Donnie was great friends with my high school boyfriend, so the three of us would *ahem* listen intently to the Gospel as Father Mike would deliver it at St. Gabe’s each Sunday.  We’d eat the donuts in the basement after Mass, play football at Youth Group, decorate the church for Christmas every year…you know, typical teenage stuff.  (My parents read this blog, so I’m skipping the high points in an effort to remain ungrounded.)

The three of us also went to Ohio State together.  The boys arrived two years prior to Chelsea and I, so by the time we arrived they had already broken the place in, which I thought was very hospitable.  I clearly remember walking into their crappy mint green off-campus house one day in between classes (no knocking necessary), needing to talk to Donnie.  He was upstairs in his room studying, and we hung out a while.  I could tell something was off with him, although I also knew not to ask because he wasn’t in the mood to tell me.  That’s what gave it away – he was always in a good mood, at least with me. 

I can’t tell you the date, nor can I tell you the details.  I didn’t know much about it then.  OSU is a giant campus, and 19 is a giant age of not knowing what’s going on with your life.  Someone later explained Donnie’s mood to me:  he had leukemia.  And it wasn’t long after that explanation that I was provided another one, outlining the details of his funeral arrangements.

My 19 year-old self was devastated.  My almost 40 year-old self has a goal.  I want to honor Donnie, his family, and all others who know what it’s like.  I want us to do whatever it is that each of us is equipped to do so that no one has to lose any more battles or friends.

Donnie never tackled me when we played football.  I razzed him saying it was because he couldn’t catch me; he smiled and said it was because he didn’t want to hurt me, but maybe someday I’d be strong enough to take it. 

Please.  Let’s tackle this thing now.

Someday is today. 

46 days left.

BriefFRIDAY - 3/8/13

Is it Friday already?  For about the past year, every week has seemed like I wake up on Monday morning, blink and it’s Friday.  This week there wasn’t even time for blinking…

Tuesday morning I taped a segment on the Dan and Dude morning show on K105.  Yes, that is a Country station so if that doesn’t sum up my commitment, I don’t know what will.  It was fun; they were cool; I still hate all things Country music unless we can count Taylor Swift’s We are Never Getting Back Together.  I digress…

Tuesday afternoon we shot the commercial at Lucky Harley-Davidson for the ride on the 16^th.  It started snowing that day too; just like it did the last time we tried to shoot it and had to cancel.  But alas, we all made it there safely and Grey had a blast!  He ran through the shop, checked out all the bikes, hopped up on one his size – the kind that takes pennies and does not require a helmet – and was the star of the show!  The commercial will air next week on the local stations beginning (I think) on Wednesday.  C’mon, snow, melt like my teenage heart did when I first saw Leif Garrett so we can ride and raise a ton of money for the cause…

Yesterday was Grey’s 4^th Birthday.  Happy Birthday, buddy!  Here’s to many more…

FORT WAYNE total as we head into week 4:  $39,785

I continue to be amazed as I watch and give thanks for donations as they arrive daily.  Even though I much prefer Alice Cooper over Kenny Chesney, I don’t want to look like Alice right now so I’ll save the emotional thank you’s for later… 

$100k is A LOT OF MONEY to raise in ten weeks, but it will go towards doing A LOT OF GREAT THINGS.  There’s no giving up.  We have a little over six weeks to go.  Just like Dude said Tuesday morning on my way out the K105 door as he patted me on the shoulder:  “Keep on keepin’ on!” 

We’re doing this thing.

49 Days to go.

 

Cramming

March 6.
I got out of that car that day.  After driving around in circles with Liv all afternoon, I finished making “the call” to family and friends.  My Dad was the first person I dialed before I left to go get her.  He divulged much later to me that had to leave work after hearing the news.  He too just drove, pulling off to the side of the road when he could no longer see it.

The local clinic in Chesterton where I had seen my Doctor neighbor, Laura, the day before was the same place I returned.  My blood was taken again just to make sure there wasn’t a bad reading.  Just to make sure my counts were ten times higher than normal, and just to make sure I probably had cancer.  They never really want to tell you concretely what you have – just in case they’re not right.  And we non-Doctors all know this; so there is a shred of hope which remains that those very human people have made a very human error.

But that wasn’t the case.  They were right.  My counts had climbed even higher in that 24-hour span.  Dr. Laura said I needed to have a bone marrow biopsy as soon as possible to determine exactly what kind of cancer it was.  The unknown is the worst.  I left the clinic with nothing more than a stranger’s name on a business card and a phone number to call to schedule some procedure for something which no one could tell me about.  So I did what any not-that-long-ago college graduate would do:  I consulted Google.

Wow.  The horror stories people put on the Internet as an attempt at catharsis are definitely not recommended nighttime reading.  As I scrolled down the hits that “leukemia” brought back, I clicked each one and skimmed the first few lines of the impending overview of doom.  With every click, I looked for a better answer.  Some new technology, some new treatment - a chance to live the rest of my life with my daughter had to be there.  I continued to read as I wiped away tears and inaudibly whispered prayers of “please help me, please let me find something on THIS one, please don’t let me have this.”  

PLEASE!  Why is this one not saying anything new?  I am going to die.  There’s nothing they can do.

I had so much tension in my neck and shoulders after sitting in front of my computer in that crash course on leukemia, that I literally couldn’t turn my head left or right.  I was one big ball of a knot, only I didn’t know it was from stress build-up.  Instead of course, I thought the cancer was ravaging throughout my body.  Everything was cancer.  Every noise, every silence, every blink – it was all cancer.

Finally, I fell asleep.  The next day I found myself laying down again, only this time it was on that stranger’s table having my first bone marrow biopsy.

51 Days to go. 

...To Those Who Wait

March 5.
Got a text update yesterday from running buddy Brad.  He was going to see his Oncologist and told me he’d report back with his counts.

“Hi Beth.  Disappointing results today!  White count stayed the same and most everything else dropped slightly.  Dr. not concerned, but I’m realizing this might take some time.  I just want my life back!”

I knew right away what he was feeling.  I sent a return message saying that this was all positive news. Good counts = a good report.  Always.  But, it’s the getting to the “real” overall numbers and holding them there that feels like forever.  You walk into that hospital feeling pretty normal, but after drugs like Cytoxin, Methotrexate, and Busulfan are pumped through your bloodstream daily, you feel ridiculously abnormal. 

Nothing about your regular routine is maintained.  Not one thing.  From showers to food to sleep (especially the sleep), the way you function completely changes.  But even more difficult than the functional changes is the waiting.  Mentally trying to maintain an optimistic outlook on everything, yet knowing full well you are not fully well just yet, is unbelievably taxing.

So it was hard for me to know exactly what to tell Brad, since I can remember as if it was yesterday how badly I wanted out of there.  I needed to function normally again, to get back into any semblance of a routine, but my body and my doctors would not allow it.  And no matter how many times your brain tells you yep, we’re good to go, time to get back at it, whatchya waiting for anyway?, if the rest of you isn’t quite ready, there simply is not much you can do in that moment.

Have you met impatient, goal-oriented runners?  Type A does not just refer to blood let me tell you.  This is not easy for any cancer patient, let alone those of us who dislike sitting and being told what to do constantly.

But I will also tell you this:  not being able to do anything in that moment has helped me all these years later to be ok in other [painful] situations.  Sometimes we simply cannot - and should not - do anything in certain moments or seasons of life… other than wait. 

Yeah, yeah, Tom Petty, we know that The Waiting is the Hardest Part.   

I for one like a good cliché once in a while.  Good things are comin’.

52 Days.

Comfort Zones

March 4.
Nothing makes us more uncomfortable than being outside our typical zones of comfort.  Especially when we are forced to do so, having no say whatsoever about being there.

Saturday, I had a say.  It was our team’s first fundraiser – wait for it…wait for it…a purse party.  Yeah, I know.  Tell me and MY comfort zone about it.  Sometimes my big mouth gets me in a lot of trouble and this was one of those times.  I had been in a customer’s office back in early November, roughly 3 days after agreeing to campaign for LLS. 

“Hey, Cindy, I LOVE your bag!”

“You do?  Well, I sell them!  Want to have a home party?”

(Silently:  Um, <insert not acceptable language> NO.)                      

But in Pavlov fashion, I responded with, “Well maybe.  If we can somehow turn it into a fundraiser, then yes, I would absolutely love to have a purse party.”

Like I ever imagined those words ever coming out of my mouth.

It was actually really fun.  I have some wicked funny girlfriends, most of whom make jokes at my expense, so I love them all the more.  Dana and her family members came over; I’m glad they were able to meet Liv briefly.  We laughed, shopped, and made some money for the cause.  Angela came up from Indy the night before for a team “meeting,” and to help get everything ready.  I’m pretty sure she isn’t speaking to me anymore, but once her cool purse arrives she’ll forget all about being out of her own comfort zone.

Cancer completely comes out of nowhere most times, not asking us what we have to say about it and certainly never inquiring about our comfort at any point throughout the process.  It’s a pretty rude guest.  Yet once we realize it has crashed our party, all we can think about is how to kick it out as quickly as possible; sometimes without even telling anyone else around us that it has shown up uninvited.

Whether individually or someone we know, a diagnosis always strikes when we are least prepared, mostly because we aren’t thinking about it.  We are just going about our usual business – work, groceries, calendars, trying to put away Christmas decorations before Valentine’s Day, that kind of stuff.  And then we are immediately transported to a place called NotMyComfortZone against our will.

But it’s ok.  There are good people there.  People who love you and want you to get back home.  And years later you will realize that even though it was a total interruption of everything you had planned, being outside of your comfort zone helps you appreciate them, purse parties, and working towards a cure so much more.

53 Days.

 

Just Like the Beatles

March 3.
In this momentous quest to attain $100k for LLS, I’ve asked fellow reps at IOS to inquire with their contacts for contributions.  There is seriously no doing this alone, so I ask everyone to donate as you all well know by now (yes, you’re welcome Mr. Non-Exempt reading this).
 

Friday afternoon, the below email was forwarded to me from my co-hort, Elsy, who works near the LaPorte/Valparaiso area:

 

Elsy, 

Thank you for sending Beth’s story my way.  It has special meaning to me for reasons very few know about.  I spent the last 5 months or so being tested for what appeared to be some form of a blood cancer.  What started off as a complaint over fatigue and inability to sleep (something I’d normally associated with “burn-out” or stress), later generated test result which indicated anomalies in my blood counts.  Needless to say, one test lead to another and so on, and so on...

 

I was recently cleared of the threat of cancer as my blood counts slowly retreated to what would otherwise be considered “within normal levels”.

PHEW!!!! 

I’d love to hook up with you and Beth in Chicago.  That would be great.  I am continuously inspired by individuals who encounter health challenges along their journey and fight to regain it.  I’m more inspired by the effects those who are cursed/blessed with illnesses have on those of us who should be thankful for having the good fortune of good health. 

As you know, my loyalties and focus is on SickKids but I never shy away from helping whenever or wherever I can.  I will gladly pass along Beth’s story to many of my colleagues who share my perspective and are always willing to help. 

Keep well, speak soon of good things, and please relay my most sincere best wishes to Beth and those near to her.

Joseph

 

Now, I don’t know Joseph but I like him.  Neither did I know what kind of cancer I actually had when my Doctor called with the news or what the future held for me after the diagnosis.  But guess what?  None of us know.  And that’s both the beauty of this life and the fear which we sometimes go through as we live it. 

What I do know with unwavering certainty is that I am unbelievably grateful for everything which is happening as part of this campaign, and realizing beyond a shadow of a doubt where it is coming from.     I’m thankful for solid friends – both old and new.  I’m thankful to have met Greyson and his entire family.  And I’m thankful that we all have opportunities in this life to come together and make a difference.  

Come together at the Gala on April 26^th!  It’s 54 days from now.  You can purchase tickets on this page and get all dolled up for a fantastic cause.  Really?  How can you say no?  I’m thankful I didn’t.

BriefFriday - 3/1/13

Updates:

The commercial shoot was cancelled Tuesday due to weather.  It’s been rescheduled for next Friday.  We’re really looking forward to doing that at the Lucky Harley-Davidson shop to promote the ride on the 16^th.  I stopped in there this week to check in and say hello to everyone.  They are great.  Truly, I cannot say enough about the phenomenal support they are showing me and LLS.  Thanks, guys – see you Sunday at the HOG Chapter Meeting (I love saying that).

Tonight, Angela, Stacy, Billy, and Travis are all coming over so we can organize the auction items, prepare for the fun-fest which will be O’s on St. Patty’s Day (yikes), and catch up in general.  And what I mean by that is eat sushi, drink not water, and take a breath.

This is the best hard work I’ve ever done.

FORT WAYNE total between the six of us as we enter week 3:  $28,175!

57 Days.  Rock on.

Grey's Gram

February 28.
I met Greyson’s Grandma, Jo, at his house last week.  Jo is Grey’s maternal grandmother, as in, she is Dana’s Mom.

Jo was not just at their home on the north side of Fort Wayne for the Cantaloupe video shoot; she was there because that is their new “normal.”  When she introduced herself to me I thought, man this entire family is so young.  The woman is hip, beautiful, and full of energy.  Good thing since she drives roughly 35 miles one way daily to watch Grey, Aubrey, and Lainey while Dana and Nate are at work.

No… Jo was not yet retired and yes, she used to have a job when Greyson was diagnosed with leukemia.  As a mother, she instinctively knew there was no way her daughter could work full-time, take care of a home, a husband, and Grey’s two younger sisters while she coped and cared for Grey.  So, she did what any mom in a position of being able to help would do:  she stepped up and stepped in.

We talked in that OSU-inspired basement about her former employment, her husband and his job, their trek to Fort Wayne every day, and how their lives have changed since finding out their grandson has cancer.  I enjoyed listening to her, all the while never once missing a beat as Grey and Aubrey would interrupt with a “Hey Gramma, can you help me?”  “Hey Gramma, where is my new train?”  “Hey Gramma, I need more batteries, please.” 

Ah, Grey and those batteries; those hidden little triple AAA buggers which keep his trains going ‘round and ‘round that crazy track.  I listened carefully to Jo’s words, as they were clearly the glue that kept the day held tightly together.  It’s not that anyone else there was frazzled or that Jo did everything – that wasn’t the case at all.  Rather, her tone, her demeanor and the way she handled all that was happening around her set the stage for everyone else.  Including me.

Without her calm, I would have been super emotional and unable to hold back the tears which I could feel welling up behind my eyes.  For when I looked at Jo, I saw my Mom. 

My mother stopped her entire life the moment she found out I was sick.  Her focus was one-fold:  she was going to do everything in her power to make sure I had a chance.  In the middle of it, I didn’t appreciate her selflessness to the magnitude which it deserved.  Not even close.  It is one of the many times I wish I could go back in time and change my behavior and my words.

Fourteen years later though, another Mom has helped me once again.  Thank you, Jo, for bringing clarity to my older eyes.  You helped me see and remember that when cancer invades a family, it takes that entire family to come together and do whatever it takes to win the battle.  It is a long process.  It affects not only the patient’s life, but the lives of the caregiver’s as well.  Emotions run high, energy runs low, and life goes on even when sometimes we wish it would just wait.

This morning I am thankful for motherly glue.

58 days.

 

Processing

February 27.
We didn’t drive home.  After I picked Liv up from the Montessori School on Friday, December 11, 1998, we drove south on SR 49 towards Valpo.  That town was quaint.  Lots of cool stores and one really, really good Italian joint called Tony’s Place.  Not that I was hungry or expected Dr. Melfi to appear out of nowhere with any magical answers.

In fact we didn’t stop in Valparaiso at all, not even at the University which I always loved walking through on crisp afternoons.  I had no idea where I was going.  Not in the car, not later that day, not for the rest of my life.  The rest of my life…

Suddenly, I wasn’t exactly sure how to frame that picture.  Would I make it to 30?  That was like “it” for me; the age by which I was going to have everything checked off my cleverly named To-Do-By-Thirty List.  The one I wrote in pink ink, probably around age fifteen.  Whatever.

So we just drove.  And sang.  And drove some more.  I finally pulled into the driveway of our apartment, turned off the ignition, and realized there was no getting out of the car.  I couldn’t move.  Shock, maybe, I don’t know.  It was nothing quantifiable in that moment; that moment in which I was stuck feeling nothing – feeling everything.  It was too much.  My brain was so overwhelmed that it just shut down, and the rest of my body followed suit without any ability of thought or control of the matter.

Numb, I remained in that driver’s seat staring at Olivia in the rear-view mirror.  Her little feet were kicking and she was wriggling her hands, smiling at me with an incomplete set of teeth flanked by drool.  I smiled right back and in that moment, everything became perfectly still.

In some weird, indescribable way, it was completely peaceful.  I loved her; she loved me.  I may have had cancer, but I was still her Mom.  Take away my schedule, my hair, my modesty, my dreams, but do NOT take away my baby.  That I will not allow, and THAT is gonna get me out of this car.  Right now.

It is so hard to believe that one word can cause such twisted and immediate emotion.  That one word can change the course of a day, a season, an entire life.  (It’s also hard for me to believe that sweet little smiling toddler is now sixteen and disgusted by my presence instead of digging it, but that’s another post altogether…)

I read a quote yesterday which said, “It’s not the mistakes that break us, it’s the dreams we left untouched that keep us broken.”  Cancer messes with our dreams.  It doesn’t, and can’t, fix our mistakes – only we can do that by not repeating them.  But the messing with our dreams part?  The messing with our life part?  I think WE can fix those things.

Thank you for continuing to read these posts.  Thank you for continuing to donate.  And THANK YOU for continuing to believe we are in this together, because we very much are – right here, right now.

59 days!

 

 

 

Winning

February 26.
“Good checkup today.  Numbers still low, but I can start walking and eating some fruits again.  Might be able to run within a month!  I finally feel like I’m winning!  Bye cancer!”

That is the exact text I received yesterday morning at 11:12am from a friend in the running group.  Runners are an odd bunch.  At least that’s what we are told from non-runners.  Hey, to each his own recreational activities. 

Here is what I can tell you unequivocally from those of us who choose running as a form of competitive catharsis: there is a bond among us which can never be broken.  It’s like a lifetime membership.  Sure, just like with any relationships we form in life, we will have those with whom we connect more so than others.  And so it was with Brad.  We didn’t talk much, as we ran (literally) in different circles.  We’d utter the occasional “hey, how’s it going?” to one another, but that was about it.

I clearly remember the first time I met him – well, met the back of his head because he was pretty far ahead of me and my running partner as we were completing Yasso 800’s around the Jorgensen YMCA.  Really, all I knew about Brad was that he was a fellow runner and therefore must be at least somewhat cool.  After all, we had something in common.

Never once did I stop to think we would someday have cancer in common.  That’s just it – none of us stop to think about it.  Certainly none of us who are “in picture perfect health”…certainly not runners.  We eat GU, drink protein shakes and were born in Kenya.   How could we possibly ever get cancer?  How could our parents possibly ever get cancer? Our neighbor or co-worker?  Our best friend?  Our son, our daughter, our children?

There is no picture.  There is no rhyme or reason sometimes.  Cancer does not discriminate.  It just comes at you when you least expect it, kinda like mile 18 and those stupid @$$ hills.

I went to see Brad at the hospital when he was there for 8 days having chemo to rid his body of Hairy Cell Leukemia, an unusual cancer of the blood which affects B cells (type of white blood cells).  I brought him a cherry slushy, as I remembered how much I craved those suckers after the chemo ran through me. I listened to him talk about his counts, his energy levels, his food intake, his mindset, and nodded in remembrance.

As hard as memory lane is sometimes, I am of the opinion we should all travel back there occasionally in the name of making the journey for others a little easier.  Otherwise, that difficult terrain we each face at certain points in our lives would be totally wasted training.

Up yours hills, and up yours cancer.  We’re going to beat you both.

Keep winning, Brad!  Your fellow lifetime members are running and rooting for you in the meantime.

60 Days to go. 

 

 

 

Providence

February 25.
Late afternoon tomorrow, Indiana News Center is meeting Greyson, Dana, and me at Lucky Harley-Davidson (LHD) to shoot a commercial for “the ride.”  LHD is fantastic.  The people who work there are truly astounding and continue to leave me speechless (which I think was secretly an underlying goal of theirs after I spoke at a Chapter Meeting earlier in the month...).

LHD’s first ride of the season is happening on Saturday, March 16^th.  Greyson will be there, as all proceeds from this ride are coming back to the campaign in his honor.  In fact the General Manager, Scott Wyman (Scotty to his fellow compadres), told Jen Alia as we were leaving the Chapter Meeting that they will proudly be supporting LLS henceforth.  Meaning, every year after these remaining nine weeks conclude, Lucky Harley-Davidson will be donating money for cancer research to the Leukemia and Lymphoma Society.  How cool is that?  

Let me tell you (quickly, promise) how this all came about.  In January, on a dreary Friday afternoon, I was lunching with Jen, Stacy, and Angela at Bandido’s.  No margaritas.  Angela had the brilliant idea that we should inquire with LHD since they are a tight-knit loving and philanthropic community.  I hadn’t slept well the night before so I’m rolling that day with some hot mess hair and my black leather jacket (office day, don’t judge).  So of course it should be me that goes in after lunch.  Angela selfishly loves when her ideas also turn into entertainment at my expense.

Prior to that day, I knew exactly 2.5 Harley riders.  I walked in armed with my story, my fliers, and my request.  Joshua was behind the main counter – super sweet and possibly super scared for a brief moment as soon as he realized I wasn’t taking no for an answer – and after listening to my plea, said “Um, you probably should speak to our GM.”  Side note:  Hey Joshua, that buck you passed I am totally taking.

Good plan, I thought. As I’m waiting for this stranger of a GM to come out and talk with me, I’m checking out the merchandise and hear another strange voice from behind say, “Beth?  Beth Schrader is that YOU?!”  Now this could go a lot of ways.  2.5 riders, may I remind you.  I turn around, this guy clearly knows me, but I cannot place him.  He’s decked out, head to toe, in gear with a huge and warm smile on his face, waiting for some semblance of reciprocity from yours truly. 

Yes, yes it IS me…but help me, I can’t quite remember you!

Duh, darlin’.  Steve Cobb!

Steve is one of my customers from forever ago so I hadn’t seen him in at least 5 years.  Everything is well in their software world, so there was no reason we should have seen each other…

Until that day.  In the Lucky Harley-Davidson shop.  And the rest as they say, is history.

Here’s to trying to make some in 61 Days.

Sweet 16

February 23.
“So what am I supposed to do?  How do I get rid of cancer?” 

I asked these questions of Laura when she called me with the news, however she’d already uttered the word, so the rest of the conversation was an echo.  She might as well have not even continued talking because nothing was registering.

“We need to determine what kind it is.  You’re going to need to have a bone marrow biopsy as soon as possible.”

She also might as well have been talking in Japanese because I had no idea the cancer lingo.  Prior to that, I had always thought biopsies were for tumors.  The only lump I had was the one in my throat every time I tried to say something in return.

I didn’t care about any of it in that moment.  I left and immediately drove to Liv’s Montessori school.

When I arrived, nothing was said.  The teachers there knew me well enough to know that something was wrong but they shouldn’t ask.  They should just let me walk like a zombie back to the brightly-painted toddler room where Liv played every day.

The drive from our apartment to the Chesterton Montessori School was approximately 8 minutes.  I used those minutes to dry my tears, collect my thoughts, and gather every ounce of strength I could muster in order to pick up my child and hold her, yet not frighten her with my own fear.  Yep, I was going to do this.  I had to do this.

And I almost did.  Before I turned the last corner and made the walk down the hallway where teeny-tiny little winter coats and matching snow boots lined the walls, I sucked in a deep breath.  But as soon as I made eye contact with Liv’s teacher my composure started to shake.   It was then that my 22 month old turned around and ran towards me - and then that I totally lost it.

She was all I thought about the moment I heard the word.  Who was going to be her mother?  I AM HER MOTHER!  Will she get this?  Is it hereditary?  Why do I have to leave her?  No.  No, no, no.  Make it stop!  Somebody tell me what to do, who to say sorry to for any past wrongdoings I have done.  Is this why I’m sick?  Is it punishment for something?  Liv.  She needs a mother.  I AM HER MOTHER.

Mercifully, this mother got to hug her sixteen-year-old today.  What a sweet day it was.

62 Days to the party.

 

BriefFRIDAY - 2/22/13

Today marks the end of the official first full week of the campaign.  In honor of this, I’ve decided that the end of every week will be dubbed “BriefFRIDAY.”  Not only will the content be brief (whatever that looks like), but it will provide a weekly update and a status update on the campaign as a whole.

So here goes.  The week was extremely productive (Read: it flew by, I have no idea where it went, copious amounts of coffee was consumed, but a lot got done).  We secured the venue for our last fundraiser and finalized all the details.  Custom auction items were completed.  Additional auction items were secured.  Pictures were taken, videos were shot, and interviews were conducted.  And as usual, emails were sent, phone calls were made, and shameless “Hey, did you happen to check on?” or “Think you’ll be able to donate?” questions were asked.

Finally, my jury is still out on whether or not to disclose the current team total on our way to $100,000.  None of the six teams has any idea how much the others’ have raised.  It’s all very secretive and our campaign manager, Jen, has such a poker face I often wonder if we should just have a Texas hold’em tourney here in Fort Wayne and call it good.  She could clear more than the campaign goal all on her own with that face.

Between the six teams I can tell you we’ve collectively raised…$14,560 in our first week. 

This money will make a difference.  It’s not just a number on paper or a screen.  It matters.  THANK YOU to all of you who have donated thus far.  You have been incredibly generous and I appreciate it greatly!  There’d be no way to do this without your support.

Next update in a week.  For now let’s just say I’m feeling very Smokey and the Bandit-ish - We’ve got a long way to go and a short time to get there...

63 Days.

 

 

All Aboard!

February 20.
“Come play trains with me!”  That is what Greyson insisted yesterday as he held my hand and led me to the basement of the Snyder home.  I arrived at 9am for a video shoot which a company out of Indy, Cantaloupe, graciously agreed to do for us as part of this campaign when Angela asked.  They are the same folks who handle the IOS marketing videos.  Cool people.  Big hearts.

So I carefully made the descent behind Grey.  Not only did I see OSU galore down there (Go Bucks!), I saw more trains than Jesse James has ever seen.  Tracks led around an entire wall, over bridges and through canyons, with NAMED train cars carrying nothing other than their respective internal individual batteries.  Duracell would be proud of that getup.  Around and around those things went, making noises as they chugged and crashed, chugged and crashed.

All as Greyson educated his studious audience. 

He was simultaneously laughing and barking orders.  “No!  That one doesn’t go there!”  Ok, dude.  I only have a daughter and she never played with trains although I would have much preferred that over Teletubbies.  Talk about freaky giant alien-like English-accented overstuffed loons that scared the crap out of parents.  Me included.  Yikes.

Anyway, I didn’t really know what I was doing with the train situation.  But I did know what I was doing when we left there and went to Lutheran.

Cantaloupe shot a video of a “day in the life” for Greyson.  His days not only include playing with trains, but once a month they include a trip to the Hospital for treatment to rid his little body of leukemia.  As Dana and I discussed today after we saw a much “sicker” looking child being wheeled out of the Doctor’s office, sometimes it’s hard to remember that Grey is sick.  Sometimes it takes a nurse named Shelley injecting chemotherapy into his port to remind onlookers that he has cancer.

I watched as Grey actively participated in a mock check-up, and educated us once again about the right way to do things.  Dr. O’Brien and his nurses are amazing.  They have their own language – with each other as well as their patients – and it was inspiring to see.  Dr. O’Brien (an OSU Grad, I might add) explained that some of his research included a 2-year stint whereby “day and night,” he researched the implications certain drugs have on one cell which is triggered, goes haywire, and turns into leukemia.  ONE CELL. 

2 years, day and night, looking at something which most of us never even consider let alone understand, is how this Doctor used and continues to use his gift.  That guy not only saved me from having to step it up in Science class, he and other researchers like him saved me period.  Just like they are saving Grey.

While Greyson may not know the technical behind-the-port terms of what is happening with his body, he certainly understands the love and care he is receiving in the midst of a bump in the tracks.

Time to get on board.  We have 64 Days to go.

This Was Not on My To-Do List

It was August, 1997.  My daughter, Liv, had been born just 6 months earlier.  My husband came home one day and told me he wanted to accept a job promotion.  So we moved from Columbus, OH to Chesterton, IN - away from my best friend, our collective friends, and my entire family.  With a new baby, a new job, and a new life which I did not know how to handle, I found my 24-year-old self in the middle of a total whirlwind.  I thought the whirlwind was coming to a conclusion when Liv’s Dad moved back to Ohio and she and I stayed in Chesterton (see “dirt” – previous post).  But I was wrong; it was just beginning.  It was then that I was diagnosed with leukemia.

I figured the unexplainable weight loss and constant exhaustion were simply attributable to stress from the obvious situation.  After taking Liv to her day-care that morning, I returned to my home office to begin the work week.  The phone rang.  On the other end was my former Doctor neighbor who still lived in the family-friendly neighborhood we enjoyed for a short while; Liv and I were now in an apartment across town.

“Beth, it’s Laura.”

“Hey, how are you?”

“Can you come back in here this morning?”  Her voice was not normal.  It was softer and unsteady. 

“No, I’m busy and it won’t change anything if I get in the car.  Just tell me.”

“Your white blood count is 88,000.”

“So?”

“So that’s 10 times higher than normal.  Something is really wrong.”

“Like?”

“Like your body is fighting a life-threatening infection, but that can’t be it since you’re able to function. Or, or it is…”

“It’s what?”                                   

“Cancer.”

65 Days.