Living Life

April 9.

Spending 9 unplugged days with Liv was not only much needed, it was everything I had hoped it would be.  Well, sans the teenage boys everywhere with their heads on a 24/7 swivel.  Oy vey.

I was thankful she had the opportunity to visit places she’s never seen, meet people she’s never known, and witness the world from a totally different perspective – her mother included.  Give me some sun, and outdoor café with amazing Cuban food, foreign beer, and a little live guitar music and my kid might actually admit I’m not so bad.  We shared lots of laughs, lots of experiences, and created lots of memories.

So there, leukemia. 

Yet even while all that vacationing was going on, it wasn’t long forgotten.  I sat outside one day and just took it all in – the entire campaign, the people involved, the people fighting this disease now and before – I soaked up every last stinking emotion until the sunscreen burned my eyes. 

Prior to that, about an hour after we embarked the cruise ship in fact, the mandatory “Here’s what you do in case of a Titanic-like incident or if pirates climb aboard” meeting took place in the designated areas.  A nice Canadian family sat down next to Liv and me at the dining room table where we were pretending to pay attention to the instructions.  Small talk ensued, but really we were just all waiting to hear the horn blast and race to the pool. 

It wasn’t until the very last day when we would see them again for a much more in-depth conversation.  We spoke to John, Susan, and Morgan for well over an hour inside the never-ending Marketplace Cafeteria as we watched the clouds through the floor to ceiling windows next to our table.  Suzie is SUPER FULL OF LIFE!  A total spitfire, that one.  They run a few B&B’s in Alberta and know all about things which I can barely pronounce.  Super cool people.

Turns out, she and her family are right smack dab in the middle of dealing with lymphoma – her Mom has it.  We talked at length about that, shared more stories, teared up at times, and laughed a lot in between. 

Additionally, they told us of a young man in their church congregation who lost his battle with leukemia at the age of 24 – after it had recurred for the fourth time in ten years.  You know what he did in between those recurrences?  Graduated from high school, fell in love, got married, and oh…rode his bike across Canada to raise awareness about blood cancers and collect money for R&D so he could help other people avoid the same fate he met shortly thereafter.

What a cruise indeed.

Thank you, John, Susan, and Morgan for passing along so much inspiration in such a small window of time.  And thank you, life, for giving us experiences which we cannot deny and will never forget.  It’s amazing what we can all choose to do in the very short amount of time we are each given.  Even on vacation.

17 Days.

Famalia, Famiglia, Familie

April 8.

So, the longest drive of my life…(including the 3 hour drive home last night from the Columbus airport after being gone 9 days)…when I arrived at University Hospitals to check myself in for an undetermined period of time, it was surreal to say the least.  Yet, a very real feeling of competitive survival came over me the moment the automatic doors opened complete with a light breeze I would not again feel for over a month.  I had switched myself into game mode without even realizing it.  In fact, I could even hear (don’t judge) ACDC’s You Shook Me All Night Long playing remotely in my brain’s background, as that was the exact song we’d run out to before every home B-ball game.  The only difference was I could not allow my thoughts to wonder What if we lose?

Before I was admitted to my room on the transplant ward, I had to stop at the Concierge (Blood Draw Station).  Up and until that point in all the pre-admittance testing, it had only been blood drawn through a vein, but now apparently artery blood was required.  If you’ve never had the pleasure, it’s something like Whac-A-Mole.  With my right arm face up on the table, some stranger watched with her naked eye for my blood to pump in between the blues of my veins and then – whack! – She went in for the kill.  After her third mulligan I though it prudent to ask whether or not she’d ever don’t this before.  Dirty look received from my non-rhetorical question, but shockingly on the next attempt she nailed it.

Off I went to meet with the “Pharm-D” – otherwise known as the jerk face who administered all the meds for every patient in the hospital.  Right.  You’d think I’d make friends with the guy.  However, “jerk face” is mild compared to what I wanted to call him during our introductory meeting.  He was explaining all the forthcoming things I had to look forward to:  loss of appetite, puking, constant metal taste in my mouth, darkened skin around every sweat gland, the obvious loss of hair…ok.  Fine.  Good. Bring it if that’s what it takes to beat cancer.  But it was his next statement which forever rendered him with his new moniker:  The steroids will cause you to gain weight as well as lots of facial hair, kind of like your husband’s goatee, AND YOUR DAUGHTER won’t even recognize you.

Big mistake.

In no particular order:

i.)                Yes, I had a husband then.  He was great during my entire sickness.  Anything else I’m taking the fifth or read my personal blog. 

ii.)               JERK FACE.  (The Pharm-D, people…please.) 

iii.)              I told him just because “everyone has to take steroids during a transplant” that I wasn’t everyone and I’d let him know if I’d be taking them or not.  Never had to.  Good guys up 1.

I was fine listening to each and every “bad” thing that was potentially going to happen to me in the way of a side effect:  but, you mess with my daughter and consequently you’ve messed with the wrong mother.

I believe this to be a pretty universal reaction, not necessarily cancer-related.  But what I will also say is this:  it reminds me how much more difficult it can be for the family members, friends, and caregivers of cancer patients to watch their loved ones be attacked by another kind of jerk face.  They can yell, cry, and spew wrath and expletives like I did – but cancer won’t talk back; it cannot be goaded.  It just keeps on coming – until it messes with the wrong mothers (and fathers, brothers, sisters, aunts, uncles, cousins, neighbors…).

We are a universally connected family.  And I look forward to the day when none of our relatives ever have cancer again.

18 Days. 

Yikes!  The 26^th will be here before we know it.

 

Brief(Good)FRIDAY - 3/29/13

I saw Dana this week and she’s almost over her cold.  The good news is Grey did not get sick and he’s doing well overall right now.  Thanks for your continued prayers for that little guy.  I know he and his family appreciate them, even though I bet they may not be able to say so this morning since their voices might also be gone….Go Bucks!  Woohoo!!

Our Buckeyes are now in the Elite 8 on their way to the Final Four.  Hey, good segue.  The number 6 is in the middle and the 6 of us have raised….

$107,824.15!

As a team, I’m rooting for us to get to that $175,000 mark and show Indy and other cities what a place like Fort Wayne is made of!    Today will be my last post until Monday, April 8^th.   I’m taking this Spring Break week off to hang with Liv, rest and recharge so I can come back and finish the campaign with everything I’ve got.  This is a once in a lifetime opportunity and I recognize that.  While I will always be actively involved in LLS, there’s only a “first” once, and all the specialness which accompanies it.  The feeling can never be replicated.  So in the words of Eminem (cut me some slack, it’s almost vacation time!)…you only get once shot do not miss your chance to blow, this opportunity comes once in a lifetime yo.

Please don’t miss your chance to help make a tremendous difference in the lives of others.  We all have to give up something, just like the ultimate thing was given up for us…on this day.

Happy Good Friday.

28 Days.  Next time we talk, there will be only 18 remaining…

 

 

Daily Thanks

March 28.

You ever hear any newlyweds respond to the standard question with, “Oh, we’ll probably have kids after I get my Master’s degree, after we buy our first house, and after our American Kennel Club litter of puppies is trained not to pee in our perfect French Colonial kitchen?”  Right.  Me neither.  But I have heard people try to justify their decision as to when their very detailed life plans would come to fruition, including the ideal time to have their bumper-sticker-brag-worthy kids.

Haha.  Good one.

I am absolutely and extraordinarily thankful that God blessed me with Liv before my transplant; the chemo rendered me unable to have more children afterwards.  Timing on our own is never right.  Our plans may seem entirely well and good when we brilliantly formulate them, but chances are somewhere along the line in the execution we jack them all up. 

Yesterday morning I was at the gym working out with my trainer and the regulars were there.  We were not only sparring with the gloves on, our March Madness was in full swing as well.  (I hit Michigan fans harder.)  When I asked where Gene was, everyone got instantly silent.  “His wife died,” Evan said.  “Cancer.”

Gene is in his late 60’s.  He has 5 children, although one, a twin, died two years ago at the age of 21.  She was on her way home from college for Thanksgiving.  We were all incredibly sad when learning the news about Gene’s wife; yet, it somehow became even more unbearable after learning about his daughter’s premature death.  The vicarious grief became unfair, unwarranted. 

It reminded me of my uncle.  The one who had taken care of my grandmother for years until she finally passed in February 2011.  While it was sad when she left us, I’m sure he felt a little sense of relief as he could “get his life back” and fully retire with my aunt in Arizona…as was their plan.  Except in October 2011 he was diagnosed with liver cancer. He was gone 4 months later, in February 2012.

Life doesn’t go according to plan; and it doesn’t stop.  Ever.  We may have just gotten through something, be going through something, or be perfectly fine when cancer shows up for an unexpected visit.  It’s not part of anything we had written down on our grandiose Bucket Lists. 

There is no perfect time for anything.  Therefore, we must choose to live fully every day, be thankful for what we have, as well as for the things we don’t.  Today I’m giving thanks for being cancer-free, for the people in my life, for learning from my mistakes (mostly), and for all of you who have gone through your own hardships – cancer possibly/probably included.

In case I haven’t said this lately, this campaign has been overwhelmingly humbling, fulfilling, and unbelievably emotional.  I’ve grown close to Greyson and his family and pray for them daily.  When I was in the midst of leukemia, fundraising for 10 solid weeks fourteen years later for LLS certainly wasn’t part of my plan. 

I am SO glad plans change.

Less than a month!  29 days.

Turn This Thing Around

March 27.

Tell Me…What Are you Waiting For…Turn This Thing Around – Van Halen, ‘92

As I’m typing this entry, I am also texting with my buddy Brad.  He’s a bit down after his most recent appointment.  The waiting is not easy.  It’s slow going and frustrating for him right now as his counts have not yet returned to normal.  He’s a runner and runners have goals.  Runners have plans.  Runners have numbers to crunch.

Speaking of, did you know that there are more than 232,000 people in the U.S. living with leukemia?  That’s as many people as there are in Winston-Salem, North Carolina.  Baton Rouge, Louisiana.  Almost as many as the 255,824 people living here in Fort Wayne.  That’s how many people have leukemia right now.  And this year?  Another 44,000 cases -  3.3 times more people than are at the Kid Rock concert right now at the Coliseum.

If you think about it, each of us only has a “right now,” right now.  Our time on this earth is very short.  Yet we are all here for a very specific reason.  I was yipping the other day about how I think I was born in the wrong century – that I’d have been better off in the days of the Pony Express instead of all this technology.  But then I realized each of us is placed within this beautifully intertwined story of life at exactly the right time. That, and I would not have rocked a bonnet well and corsets were for suckers.

The people we have, had, or will have in our lives are in them for a reason.  Sometimes we know and recognize it, sometimes not.  But eventually we will all look back and ask questions such as did I try my best?  Did I use what I was given?  Did I love well?  Did I make a difference in the life of another?

For our sake, I not only hope we can answer yes, but I hope we can mean it.  Because there are at least 255,824 + 44,000 people right now counting on it.

30 Days to go.

Anything is Possible

March 26.
I went to Cleveland met with Dr. Lazarus at University Hospitals (UH) to discuss the prospect of having my BMT there.  He was a short little Jewish man, with a grey-white beard and zero tolerance for humor.  Whatever, I thought.  I didn’t need a friend; I needed a miracle and someone who knew how to administer one.  Any potential for friendship or an appreciation of my off-color jokes or his awful ties would have to wait.

Yes, he’d accept me as his patient.  If a suitable donor was found for an allogeneic transplant (cells from someone else, not my own), Dr. Lazarus would handle the course of treatment from start to finish.  The National Marrow Donor Program (NMDP) was contacted and 6 potential matches were found.  To say that was lucky is an understatement. It almost never happens.  Even rarer, I would later find out the donor Dr. Lazarus chose out of those six had gone through this once before for a woman who lives in Las Vegas.  I tease her to this day that she has really good stuff.  (Her name is Beth, too.  More on meeting her later.)

I was admitted to the hospital on April 14^th, 1999.  The day before, we drove a little over an hour from my parent’s house in Canton to UH for my central port to be surgically installed. Falling asleep on the cold steel table, counting back from ten, I clearly remember thinking, here we go.  There’s no turning back now.  Please let this work.  When the intern ripped open my gown to start the procedure, I was still awake, so I mumbled that he could leave his money on the table for me.  Those people were gonna learn to love my humor or kick me out, one or the other.

I woke up feeling like someone had socked me in the left shoulder.  Three prongs stuck out of my chest kind of like those cool giant floor reading lights you see everywhere nowadays, and they would serve as my lifeline for the next four months.  I left the hospital that day, went back to my parent’s house and watched the clock while trying to find something meaningful to say.

But there weren’t any words.  I don’t find myself at a loss for them usually, unless I really need to convey something like it’s the last time I might ever have the chance.  Then I either say nothing or say way too much and royally screw it up.  Maybe if they would have named me Malcolm…  In that instance I just said, “See you when I get back” as I walked out their door into the unknown.

It was one of the longest and scariest car rides I’ve ever taken.  But it’s ok not to know sometimes, because knowing smothers possibility. I walked into that hospital feeling like I used to when I walked onto the basketball court for the big game.  My stomach had butterflies, my confidence was buried underneath the nerves, but this thing was getting done.    

No way we lose today.  It’s not possible.

Thank you for continuing to contribute so that others can win their own fights as well.  We are providing hope and possibilities to so many people.

31 Days!

 

Choosing

March 25.

Change is hard.  Not changing is sometimes harder.  And being held to standards which others (even well-intended) expect of you based on experiences they’ve not experienced themselves is impossible…

One of the first questions I was asked immediately after being released from the hospital threw me for a loop.  It was as if I was taking a test and leaving a question blank, and we all know how well that works for a Type-A personality. 

So, are you changed?  Are you like, stopping to smell the roses and all super close to God now? 

What what?  I had no idea how to answer if I was “a new person!”  Was I supposed to be?  Did one of the copious amounts of chemo contain an alter-ego, a better me, a different me?  I didn’t feel like someone else.  I might have looked like a totally different person on the outside, but my insides were still (mostly) intact.  My past was unchanged; my memories and friendships and loves and lessons and hopes and dreams were all still the same.  Cancer may have been my worst adversary to date, but no way did it have enough power to unlock my treasure chest containing those precious items.

I hadn’t stopped to think about how I felt.  I just wanted to go to the Post Office again.  Pick up dry-cleaning.  Fall asleep next to a human being I was connected to instead of a beeping machine.  I wanted to be normal again.

But is there ever such a thing as normal in life?  I mean, really.  If you guys know where they sell that let me know, would you?  Not that I’d buy it, mind you, but it would be fun to find out what constitutes such a subjective idea that most of us strive to attain.  

Here’s what I did learn many years later (not in the hospital parking lot):  it is exactly in that striving when we miss the things which are right in front of us.  The people who are there, the ones who are glaringly not, the chance to be changed.  

Cancer takes normalcy out of life in the blink of an eye.  But we can still choose to see.  We can still choose to believe. Because on the other side of cancer is a new person just waiting to blossom into exactly what (that God I’m much closer to now) wants them to become. 

I can’t wait to see what Greyson and Kellcey become when they grow up.  Please help us give them and so many others that chance.  We all have choices to make, and many of them in this journey are not that easy.  This one is.

32 Days.

 

 

BriefFRIDAY - 3/22/13

This week marked the half-way point of the entire campaign.  Jen warned us it would come quickly; what an understatement.

 I am happy to report that I’m fully recovered from Sunday.  And it only took me 5 days.  Nice.

Tonight is our last fundraiser for the month at Peter Franklin Jewelers on Dupont Rd.  I’m pretty excited for it, as there will be friends in attendance whom I haven’t seen in forever.  We are long overdue for some laughs.  Pretty sure all I’ll have to do is recount one or two stories from O’s and they will look at me with their usual, “You cannot make this stuff up” faces to which I will respond with, “You guys aren’t new, are you?”

Liv will be helping this evening along with Stacy’s daughter, Sydney.  Hmm.  Two teenage girls in a jewelry store.  Call me quick, but it’s possible part of my personal donation to the campaign might happen tonight.

As a reminder, the Fort Wayne goal between the six of us is $175,000.  To date, we have raised…

$76,860!

So…we march on in this quest to get money into the researcher’s hands so they in turn can Get.Rid.Of.Cancer. 

Woo-hoo!  I like that goal the best.

Thank you again to all of you for continuing to read this blog, for your support, and for your very generous donations to date.   We ARE making a difference together.

 

 

 

 

 

 

 

 

 

CML

March 21.

Tall, thin Dr. Mary finally called with the biopsy results.  Ironically, I was in the exact same chair in my home office where I had been when Dr. Laura called speaking in that soft, broken voice with news that would forever alter my life.  Chronic Myelogenous Leukemia.  By the time I heard these three little words, I had already accepted the fact that I had cancer.  This time though, I knew the call was coming.  I could sense it in my bruised bones.

There are many circumstances in life which present themselves that you kind of already know are coming.  Yet, when they finally arrive and someone finally utters the words you either long to hear or long to avoid - it somehow hurts even worse.  The blow is not softened, the pain is not lessened.  And it is exactly this way because the confirmation causes action to be required; usually it’s one that scares us.

Knowing the call was coming also did not immediately make “accepted” synonymous with “I got this,” or “this will all be ok,” or even “whatever.”  In that moment, I was in shock with angry on deck.  My initial acceptance was reluctant, but I accepted it nonetheless because it was reality and I had no choice.  Oddly, I also experienced an instant relief.  I could feel the tension in my neck and back dissipate. All that fear was breaking up, and the burden of the unknown was no longer resting on my shoulders. 

The only course of action back then with any chance of avoiding death and providing a solution was a Bone Marrow Transplant.  The odds did not seem great and the process itself reminded me how sorry I was for not paying attention in any Science class whatsoever.  However on the bright side, I didn’t have to think much about what to do going-forward.  There was only one choice, and I accepted it.  I was in.  Let’s do it, I told Mary and everyone else who awaited alongside me in the abyss for an answer.

Chronic leukemia, I learned, was the “good” kind of leukemia to have…if you had to pick.  That’s always a top ten favorite thing to hear come out of someone’s mouth.  I know they meant well, but I was not well.  My sarcasm, sense of humor, and patience tends to be non-existent when I’m sick, as is the case with most cancer patients.  It’s kind of like saying Well…if you’re going to be a Cleveland fan, the Indians are playing tonight and no other channel is working on TV anyway, so maybe they’ll finally win.

The first thing to do in conjunction with all the pre-testing that goes on to ensure your body might even have a potential shot at handling a BMT is to figure out where you will have your transplant.  My parents, sister, and I drove to IU Medical Center in Indy.  Very nice people, very nice facility.  I remember taking the tour, trying to take in all the information, trying to be ok.   Except I couldn’t and I wasn’t.  Nothing was registering, but I kept my head held high and kept on trying.  Once in a while, I would understand exactly what was being said and I’d choke back tears.  I did not want my parents, especially my Mom, to see me cry. 

It’s hard enough watching your kids go through any of life’s regular pain.  Couple that with knowing your child might die and there is absolutely nothing you as their parent - the one who protects them, cooks for them, hugs them, loves them unconditionally - can do to make it go away, and it’s too much to take.  So crying was not on my agenda.  And I made it through the entire day UNTIL…until I walked into the kind of isolation room where I would be undergoing this potential life-saving procedure.  It was then that it started to sink in and become as real as any of this fiction had been.  I would not see my child, the one whom I protected, hugged, and loved more than I’ve ever loved another human being for at least a month, and maybe never again.

We left Indianapolis and I was silent.  The only thing I knew I could control was my loyalty.  Let’s go to Cleveland instead.  Shock is on base; Anger is up to bat; Game-on.

As I write this, I can’t help but continue to think of Greyson.  I was a child and a Mom all at once as I went through these stages of grief.  We are all children of someone.  We all have family and/or friends who feel completely and utterly helpless when their loved one is diagnosed with cancer.   And I know how Nate and Dana and the rest of their family – along with so, so many others – are feeling right now.

I need you to please feel this way now, too.  This stuff is real, and it is here and it is NOW.  We only have one month to make a difference. 

We don’t have to accept cancer and loss anymore if we play as a team.

36 Days.

 

There Are No Strangers

March 20.
I decided against a post outlining the O’s fundraiser.  I’m pretty sure within all the “I agree” checkboxes  was some language about not disclosing any events which even remotely rivaled High Street in Columbus, Ohio, circa 1991.  That, and a guy who looks exactly like Russell Brand is still out there somewhere swearing on his fake English accent that I am his Katy Perry. 

Back to Lucky’s.  I had no idea how to fundraise initially.  Sure, I ask organizations for money all the time as part of my “real” job, but that’s different.  I ask only after an entire sales process is exhausted and most of the time it takes way longer than 10 weeks.  So when Angela brilliantly suggested I walk in off the streets to a Harley-Davidson dealership, it sounded reasonable enough to me.  I mean, what could possibly go wrong?

Turns out nothing.  And do you want to know why?  It was meant to be.  Right place, right time, right everything.  From a long-time customer of mine who just “happened” to be there at the same time to the fact that Scott just “happens” to be a fellow OSU alum who was thrilled to learn that Greyson is also a huge Buckeye fan …it was not my doing.

This whole campaign is way bigger than me, or any of us for that matter.  I know, I know, don’t talk about politics or religion at work and FOR SURE don’t do it on a blog!  What are you thinking?!  (Donate now please, before you read on and may change your mind.  Thanks.)

(Ok, seriously.  I’m asking today.)  It took me a lot of years and a lot of hardships to realize we are not in control of much of anything in this life.  Yes, we have free will to make choices.  Yes, each one of those choices has consequences – both good and bad.  But when God wants something to happen for His plan, it’s gonna happen, whether we want it to or not.  (And no, you eye-rollers…there is no “un-donate” button.  Gheese.)

Anyway, this has been in the back of my mind since day one and it was further solidified on Saturday.   Harley-Davidson’s 110^th year anniversary is this year.  As part of the fundraiser on Saturday, tickets were sold for two commemorative leather jackets, and I was given the honor of drawing the winners.  The huge container was filled to the brim with little red tickets.  I swirled them around and around even though Scott already had, and pulled out the first name:  I don’t remember.  It was a woman’s name!  She was not present in the dealership, but you didn’t need to be to win.  Scott called her faster than you could say Publisher’s Clearinghouse to tell her the good news.

The next winner would be for the man’s jacket.  And as luck would have it, I drew a man’s name:  Harold.  He was standing immediately on the other side of the counter and looked, I decided, either shocked, embarrassed, or scared.  He had a small and gentle smile on his face, and a woman I figured to be his wife sort of hugged him and started crying a little, while a guy to Harold’s right gave him a congratulatory slug in the shoulder.  Aw…that’s nice, I thought.  A guy who clearly has never won a thing in his life.

Turns out his life is expected to be cut short 3-6 months from now.  Harold has terminal brain and lung cancer.  He’s early 30’s with twin 3 year-old daughters. 

Pulling that ticket out of hundreds was not my doing.  But I did know what I had to do after learning why it meant so much to Harold to hear his name announced.  I went over and made small talk with him, using the jacket as an opening, until he opened up.  We shared our feelings and fears about a cancer diagnosis.  We shared parenting stories.  We shared hope.  We shared life.

Two total strangers that just “happened” to meet.

Please pray for Harold. 

37 Days.

The Ride

March 18.
Seriously, I am too old for that kind of weekend. 

Because the recovery from things I saw at O’s which cannot ever be un-seen isn’t fully over, let me instead tell you about Saturday’s ride at Lucky’s.  I arrived at the dealership around 9:45am and the staff was putting the final touches on everything inside.  Soup sampling tables, head shaving stations, corn hole for the kids, and Irish music could be found in various areas throughout the building.  Joshua unlocked the door, I walked in, smiles and hugs were exchanged, and the day was underway.

People began to arrive around 10:30.  The majority of the crowd, including Greyson and his family, began rolling in around 11:15.  Grey’s Aunt Kara and his two super cute about-his-age cousins came as well.  I was happy to meet more of the family, and it was really cool watching the kids run around and play together.  There was some serious (all in good fun) cousin-rivalry going on at the corn hole station; Grey has an arm on him!  Along with his newfound love of motorcycles, he might just end up a baseball player.

By noon, we were all pretty much ready to ride!  The weather, while chilly, held up nicely.  Everyone lined up and the grandstand was filled with waves and cameras.  A group from Decatur rode up just for this event and specifically, so Grey and his Dad could ride along in one of their side cars.  To see Greyson wearing his little helmet coupled with the HUGE smile on his face the entire time was, as the saying goes, priceless. 

By now you know that one of my favorite feelings in life is that of camaraderie.  I was lucky enough to ride with Charles/Chuck/”whatever you want to call me is fine”; he’s the road captain and one of the nicest, coolest, most genuine people I’ve ever met.  Oh yeah.  He’s alright on the front of a bike, too.  You want to make him or anyone else there laugh out loud?  Ask ‘em if they want to switch places and ride on the back of their own bike. 

I have my motorcycle endorsement and used to ride frequently.  It’s one of the most freeing feelings out there.  Saturday, the feeling was so overwhelmingly freeing, my eyes weren’t just glassy from the wind and chill.  As I sat on the back of this bike with someone I’ve not known long at all in control, I felt like I had known him and everyone around me forever.  I replayed the events of my sickness in my head; where I’ve been, how I got there, where I am now.  Every time Charles rode over a bump on those back country roads, I’d tear up a little more as it somehow connected me to every bump in my past which led me to that ride, that day, for another person who is in the midst of his own little journey right this very minute. 

At every stop light, I would glance over to my right and look at Scott – in his pink (breast cancer) helmet to boot – and realize just how similar we ALL are.  He had the most peaceful and complete smile on his face as he was surrounded by his camaraderie, doing something he absolutely loves, for absolutely the right reasons. 

And when I would crank my neck a little further to my right… I’d see Greyson back there in the middle of a long line of brotherhood, realizing and praying that this will all be his past someday.  We may all come from different walks of life, have different interests, different upbringings, religious beliefs, tax brackets, favorite foods, colors, or cartoon characters but one thing will never change:

We are in this thing together.

39 Days.

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.