Letter to my LIVESTRONG Donors

Tribute Wall – LIVESTRONG Challenge Philly – August 2012

Written by Krista L. Paternostro

Originally published at www.livestrong.org/blog on 23 August 2012.

Dear Team LIVESTRONG Challenge Philly Donors:

I am truly honored and humbled to tell you about what you made possible through your generous donations to my LIVESTRONG ride in honor of my sweet sister, Kass.  I know that this story is long, but I wanted to make sure that I captured every moment.  This is a story that I want Kass’s daughter Josie to read when she gets older so I did not want to move past a moment of significance.  The weekend just kept unfolding in front of me in one very emotional moment followed by another.  This is how it all played out.

On the ride down on late Friday afternoon, the rain just poured over my car and my bike.  It has been a long time since I have experienced rain that challenging.  It was on that rain-drenched highway that the uncertainty started to creep in:  Can I really do this?  Will I even make it 10 miles, let alone 100?  How will my body hold up, as I have not put in the proper time on the pedals?  But, I knew in my heart that this was something I had to do. This was a part of my healing, my recovery from devastating loss, and a way to keep a promise that I made to my sister: a promise to honor her memory and to tell others about her life and about her courage to fight and about her determination to beat this awful disease.  So many people had contributed to my ride, so many people had believed in me.  And, I am no quitter.  Never have been, never will be.  Not doing this was never even an option.

But, I thought that my emotions might get the best of me.  Unbelievably, Kass had died only 7 weeks before the ride.  The pain was raw and the pain was real.  The memories of last year’s Challenge weekend kept flooding through my mind.  Kass had attended the fund-raising dinner with me last year.  She told me later that it was one of the best nights in her cancer journey.  She met her inspiration, Lance Armstrong.  She talked to him about never giving up, fighting like hell, and doing whatever it takes.  Tears fell down her cheeks as she proudly stood along with other cancer survivors introduced that night as the crowd cheered.  I was so very proud of her.  As long as I live, I will never forget that night.  Not doing this race to honor my sister, well….that was just not in the cards.  I was going to do this, and I was going to do this for her.  No question about it.  Not a doubt in my mind.

I arrived on Friday evening and after checking into my hotel, went to the packet pick-up at Montgomery County Community College, which was also the start/finish line for the weekend’s activities.  But, before picking up my materials, I completed my In Memory Of card and clipped it onto the Tribute Wall.  This is always an emotional part of the weekend, as we think about why we are there and the purpose by which we ride/run.  This year, I reached for the In Honor Of card first, only to quickly correct myself because this year I will ride in memory of a beautiful soul gone too soon.  I clipped the card onto the wall, and gave it a quick kiss.  Tears?  Yes, tears were a big part of this moment.  Tears of love, tears of sorrow, tears of time lost, tears of moments yet to come, tears of hope, and tears of happiness….happiness that I was able to be here to be a part of this amazing weekend and to bring Kass’s name and memory out from the shadows and back into the light.

I stood in awe as I read the messages that had already been written on that wall and I was overwhelmed by the emotions likely attached to each and every story.  I thought about my own journey with cancer as a caregiver for Kass.  I thought about how my life will never be the same.  I thought about all of those who continue to fight.  I thought about those whom we have lost and the immense pain endured by those loved ones left behind.  I thought about my own family and how hard we all fought to try to help Kass to win this battle, but in the end only to have no choice but to let her go.  Then, I thought about the power that cancer has over our lives.  I am not referring to the destructive power of cancer: changing lives, taking lives, and destroying families.  Rather, I am talking about the positive power that comes from cancer.  The power to move people to action.  This is what LIVESTRONG is all about…..harnessing people’s personal stories into a movement of hope, inspiration, and love for people across the globe that share in the understanding of the cancer journey.  That is what I saw in those messages: hope, peace, love, memories, sadness, struggle, heartache, joy, and inspiration.….it was all right there in front of me.  I knew it was going to be a life-changing weekend.  I just had no idea how life-changing.

The next morning, I woke early to be at the start for the 10K race.  I decided since I was not running on Saturday, I would volunteer to help during the race.  I checked in and received my blue volunteer shirt and nametag.  I was asked to help to distribute the yellow survivor roses at the finish line.  Once again, this was an emotional job but one that I was happy to do.  It was a beautiful morning.  The sun was shining.  And, my friend Rafael was running in the 10K with Kass’s name on his back.  It was an amazing morning, full of smiles, tears, laughter and joy.  I was so happy to be there and I met so many wonderful and nice people at that finish line.  Meeting Mary, Rich, and Brooke were three of the highlights of my day.  All three were strangers to me when I arrived, but all three became my friend following our brief interactions.  That is the thing about cancer.  It provides an opportunity for people to care and to help one another.  And the collective encouragement and kindness from these three helped me to make it through that very emotional experience.

And, as I applauded each runner that finished that race, I could not stop my mind from thinking, “What if?”  What if Kass had lived?  What if she could have been here with me this year? What if she had never had cancer?  What if someday, somehow the world did not have to deal with cancer anymore?  What if?

The rest of Saturday afternoon was spent preparing my bike for the big event.  After having lunch with Rafael, we went to the local bike shop to shore up on our supplies for the long ride ahead.  I had met some wonderful people on Friday night (Scott and Katie, among others), who were kind enough to help on my final bike tune-up, which it desperately needed after the hard rains.  Then, it was time to prepare for the Fundraising Appreciation Dinner.

I asked my two teammates, Rafael and Casey, to meet me in the hotel lobby before we went to the dinner.  When they arrived, we had a champagne toast and raised our glasses to officially inaugurate Team Kass.  It was a real honor to have both of them on my team.  Rafael had joined the team only 4 weeks before, but had done an exceptional job at fundraising and providing overall team support.  He had come to know Kass this past spring and felt a connection to her, and she to him.  When she died, he knew he had to ride.  I was grateful that he did.  And, when I saw Casey in the lobby that night, it was the first time I had been in her company in more than a decade.  It is amazing how people will support you in a time of need.  She had been a real source strength and encouragement to Kass along her journey.  I knew that she would offer much to our team and I was not disappointed.  Rafael and Casey met for the first time in the car ride over from their hotel to mine.

In the lobby on the way to dinner, I had a chance to introduce them to my dear LIVESTRONG staff friend, Mindy Boyum.  Mindy has been my main contact at LIVESTRONG and has been a tremendous source of energy for Kass and my family over the past year.  She is an inspiration to me, and it was so good to reconnect with her again.

When we arrived at the dinner location, the evening was just beautiful.  The venue was lovely, as well.  We checked in, grabbed a drink, and found our seats.  Kass would have gotten a kick out of it, as we were seated at the head table.  In addition to our 3-person team, I had invited our high school tennis and basketball coaches, Beth and Paula, to join us at the dinner.  Both Beth and Paula had been amazing to Kass throughout the past year and I was so glad that they were able to attend.  So there the five of us sat, at Doug Ulman’s table.  At Lance Armstrong’s table.  Pretty unbelievable.  I was thrilled to have a chance to speak to Lance about Kass.  I showed him the picture I had taken of the two of them the year before.  I told him that she had lost her battle.  I told him what an inspiration he was to her during her fight.  I told him that she was the reason I was sitting there that night.  I told him that it was because of her that I became involved in LIVESTRONG.  And, it is because of her that I will never stop doing whatever I can do to support the fight to end this devastating disease.

But sitting with Lance was just one highlight of the evening.  The others came with the rest of the dinner program.  We heard a touching and moving tribute by former NFL linebacker, Chris Draft, about his wife Kaesha.  As I watched the introductory video, I could not but help correlate all of it to Kass’s journey.  So similar, yet so very different.  But, when I heard him speak, I just knew that the similarity was there.  Two young women in their late 30s diagnosed with advanced stage cancer.  Two young women who did not want to lose this battle. Two young women who kept a smile despite very challenging times and a complex diagnosis.  Two young women who always said, “whatever it takes” and “what’s next?”  And, someone who loved one of these women standing at the podium asking, “What if you had just one more minute, just one more second…”  Oh, I have said those same words thousands of times over the past 7 weeks!  After the dinner, I went over to speak with him.  I once again shared Kass’s story.  I told him that he was an inspiration to me and to so many people.  I told him that I plan to start a foundation for Kass.  We posed for this picture.  I just know that our paths will cross again someday.

The rest of the program honored the tremendous fundraising work of some wonderful and deserving LIVESTRONG volunteers.  It is always energizing to hear the stories and the motivation that drive these passionate people to raise so much money for an organization that they love and believe in.  Someday, I hope to stand on that podium and be able to share Kass’s story.  Go Team Kass!

As I prepared for the big day, I was anxious and tired all at once.  Since last year I did not ride, I had no idea what to expect the next day.  This would be my first official bike race.  This would be the farthest I had ever attempted to ride.  I had trouble sleeping, and knew I had to wake early for the 7:30 a.m. start time.

But, as it is with every other new and uncertain journey in life, we just wake up and go.  I met Casey and Rafael at the college at 7:00 a.m.  We biked to the start line and took this picture.  Whoa, the nerves were running through me.  I felt like I was in over my head, which I most certainly was.  We made our way to the 100 mile corral and talked about our strategy.  We quickly realized that we really did not have a strategy other than that we should all cross the finish line safely.  That will work!

As we made our way to the start line, I could not help but hear a shout from the spectators “Go Team Kass” the voice yelled.  What?  Unfortunately, for many reasons no one in my family was able to make it to the race, which I certainly understood.  But, when I looked to my left I saw an old friend from high school – Kim and her friend Jo – shouting from the sidelines.  It was then that I realized they had been following our posts on Facebook about the race and had decided to come down for the day.  How amazing is that?  I still have no words for what that truly meant to me.  Kass would have smiled at the thought of it.  Not only were they there for the start, they actually found us on the course to cheer us on, and they were there as we crossed the finish line.
Never underestimate the power of people to come back into your life just when you need them most.  Thank you, Kim for your kindness, encouragement, and support.

Now as we pedaled past the podium at the start line, I gestured to the announcers about our team jerseys. “And, there goes Team Kass!”  “Riding in memory of Kathleen Morgan,” they announced to the crowd.  I was so proud in that moment!  I had designed our riding jerseys with Kass’s picture on our backs so that as people passed us, they could see who we were riding for.  I also included her words that still echo through my mind every day.  Kass used these words all of the time, but especially as the prognosis continued to worsen:  “Everything will be okay.”  You see, it was always she who was comforting us.  That was her gift.  And today, I try to live by these words no matter how hard things seem.

The ride itself became a personal odyssey for me, as I am sure it was for my teammates. I know with complete confidence that my sister was with me on that ride.  Those hills are grueling and no one is spared during this ride.  I have complete respect for riders who had come to that course ready to ride.  Some were in amazing shape and those hills (we called them mountains) were no match for their strength and determination.  My teammates were among those who were ready.  Me, on the other hand….I was not.  And I knew it.  Yet somehow, in those quiet moments on the open road as I was pedaling all alone, I kept talking with Kass.  And from somewhere deep inside of me, I found the strength to just keep pedaling.  I believe that it was she who pushed me up those hills.

We felt strong at the beginning and then things began to test our endurance and our will to actually do this.  Casey suffered two flat tires within the first 20 miles of the race.  Rafael fell onto his injured elbow right after the first tire change.  I was overcome with the emotions of the entire experience, not sure if I could find the strength to finish the ride.  And so it went. One setback after another.  And, with each setback, a moment of reflection and wisdom from Kass, “Now what?  What’s next?  Let’s go.” And, on we rode.

We missed the 100 mile cut by about 25 minutes. This meant that we were re-routed onto a 77-mile ride instead of the 100-mile ride.  After what seemed like 10 straight miles of hills, we thought 77 miles would be a pretty respectable distance. And, it was.  But, around mile 40, leg cramps set in.  I know from years of participating in sports and exercise that I had not prepped my body for the demanding toll this ride would take and now I was going to pay for it.

The hills were the worst.  Not only are they psychologically tough, they actually forced both calf muscles to seize up whenever I started to climb.  I knew I had no choice but to take off my shoes and walk to the top of some of the steepest climbs.  Anyone who has ridden with leg cramps knows exactly what I am talking about.  I was inspired though, as I cannot tell you how many people talked to me as I walked and they rode by, “Cramps?” they would say and then they would toss me their best remedy to ease the pain.  I had gels, wafers, honey stingers, etc. all thrown to me from anonymous riders. It was like a community of people that did not know me, but wanted to make sure I made it to that finish line.  It was unbelievable and I was grateful.

My big crash happened on one of those hills.  As I started up, thinking for some reason that this hill would be different, the cramps started again in both legs.  Bad.  So bad that I squeezed my brakes but forgot to unclip from the bike and over I went.  Right in the middle of the road.  I was crying out in pain.  Casey and Rafael stopped and came to my aid.  So did other riders.  I think they thought I broke my leg.  But no, just cramps.  The medic arrived and asked if I was okay.  By this time, I was okay.  Once I took off my left shoe I was able to relieve the pain.  At this point, it seemed a little too much to have so many people off of their bike trying to help me.  It was great though.  And, this is where my path crossed with John.  He came out of nowhere.  He is a tri-athlete and was doing the 100-mile loop.  He had made the time cut and was on his way back toward the finish line.  He stayed there with us to make sure that I was okay.  He then insisted that I take some of his drink from his water bottle.  He promised me that it would help with the cramps.  He called it his homemade “ironman powerade”.  I did not know John, but I was desperate for a remedy.  I poured some into my water bottle, added some water and drank it.  All of it.  This, along with the other remedies people had offered, worked and the last 20 miles of the ride seemed more bearable.  No more walking, no more debilitating cramps.  Thank you, John, and all of those with names I do not know, for helping me through.

Toward the end of the ride, I could begin to feel myself weaken physically, emotionally, and mentally.  My teammates helped me to make it through.  I cannot thank them enough for believing in me.  And as I crossed that finish line, I could not hold back the tears.  I was overcome with so many emotions: unconditional love for Kass and sadness over all that I had witnessed her go through over the past year; longing for just a little more time with her; wishing she could have been at the finish line to see what we had done as a team to honor her; pride over actually crossing that finish line – which at times seems doubtful during the ride; but most of all, I felt tremendous hope.  Hope for all of those who still fight and hope for those of us left behind.  Hope for Kass’s beautiful daughter, Josie that she will continue to grow in love and be surrounded by happy memories of her Momma taken too soon.  And, for the first time since Kass had died, I actually thought that maybe I really could find a way to live in this world without her.  Maybe I could honor her life by continuing to be a part of these types of experiences where I have a chance to tell people her story and about how hard she fought to live?  Maybe, just maybe, everything would be okay?

Sunday night was filled with the normal emotions that follow any challenging athletic test.  I was exhausted and energized.  Ready to sleep and ready to party.  At the end of the day, sleep won out.  I was wiped out. Just before I headed back to my room, I was standing at the bar talking to some of my LIVESTRONG friends when someone mentioned that the announcers from the race, Rich and Chris, were sitting at the bar.  I knew that I had to talk to them.  I had to thank them for announcing our team as we started this journey.  We were such a small team compared to the others.  Only three of us.  It meant so much to hear our name at the start.  As I spoke with them, they were very nice and asked me “Which team?”  “Team Kass” was all that I replied.  In an amazing moment, I realized that with just that little bit of information they actually remembered our team. They remembered our red jerseys, they remembered Kass’s picture, and they remembered the words at the bottom of our jerseys.  They remembered.  I was so taken aback at this that it brought me to tears.  I proceeded to tell them all about Kass.  I told them about her fight to live.  I told them that I am on a personal quest to keep her memory alive.  I told them that I want to do whatever I can to help others going through this experience.  “Keep going,” Chris said.  “You are doing great!  Keep going.”  He had no idea, but those words were very timely and just what I needed to hear.  As you may suspect, when everything around you feels sad and you are grieving, it is easy for the doubt to creep in.  Thank you for your words, Chris.  “Keep going.” I promise you that I will.

Within a day after returning from Philly, Team Kass decided that we wanted to do more.  We are now moving Team Kass down south and will ride the 45-mile course in Austin, Texas for the Team LIVESTRONG Challenge Austin on October 21, 2012.  We would love to have your sponsorship support.  We need to raise $20K in just 5 weeks.  But, just like Kass used to say, “Whatever it takes.” We believe that nothing can stand in the way of the passion we feel about why we ride.  We feel confident that others will feel our enthusiasm and embrace our cause.  As one of my favorite sayings goes, “Don’t judge each day by the harvest you reap, but by the seeds you plant.” – Robert Louis Stephenson

So what does participating in these LIVESTRONG events mean to me?   For me, I walked away from this Challenge weekend with some new friendships formed, old friendships strengthened, and a renewed sense of commitment to this cause.  I want to share Kass’s story with the world.  I want to do my part to make sure that other families do not have to endure what Kass and our family endured.  I want to be surrounded by those involved in this organization that truly care and are trying to make a difference.  In many ways, I think of the yellow LIVESTRONG band as a circle of hope.  Because within that circle you will always find love, understanding, acceptance, and a sense that no matter what, “everything will be okay”.

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