The Marquarts and the Woods – BE Committed

Jim and Keri

Be Committed. The meaning ascribed to these two words can vary a great deal from person to person. In times when health and circumstances are beyond one’s control – as is often the case for young adults experiencing cancer – we are inspired by those who take these words seriously. They look beyond themselves, they get comfortable with discomfort, and they just keep showing up.

At the Ulman Cancer Fund for Young Adults, we are honored and humbled to partner with these types of people every day. Sometimes we even get to interact with an entire community of truly committed people – this is the case in a small town, three hours away from UCF headquarters, in Northeastern Pennsylvania.

Each fall for the past four years, a small group of UCF staff has piled into the car and made the trek up Route 83, gone over the river and through the woods, and arrived at the “Back Mountain” of Luzerne County, PA – more specifically, at the home of Jim and Keri Wood for Screw Cancer Brew Hope PA.

It all started because of the Woods’ natural inclination as 

Marjorie and Brian

helpers. This bent prompted them, in 2013, to introduce long-time friend Olivia Marquart – a recent college graduate newly diagnosed with synovial sarcoma – and her family to Brian Satola, Chief Operating Officer at UCF, where Jim serves on the Board of Directors. The relationship, and ultimately, the community that developed as a result of this introduction, soon made the distance between the Back Mountain and Baltimore seem inconsequential.

The Woods have always been committed to having a good time, hosting a big end-of-summer party at their home each year. Upon Olivia’s diagnosis, they saw a need and felt compelled to leverage this event into something more meaningful. They partnered with Olivia’s mother, Marjorie, and sister and brother-in-law, Samantha and Jamie, and committed to turning the lighthearted party into Screw Cancer Brew Hope PA: an awareness-building opportunity and fundraiser for UCF.

 

Samantha on Key 2 Keys

Both the extent and impact of this commitment are impossible to quantify. For four years in a row, this small group and their extended families and friends have spent countless hours on event planning and execution – spreading the word across the neighboring towns, collecting donations for silent auction items, negotiating with vendors, setting up and tearing down decorations – all toward the goals of teaching their local community to be ambassadors of the knowledge that young adults are not immune from cancer, and giving that community a tangible way to support Olivia and family throughout her ups and downs with cancer.

Through their commitment to Screw Cancer Brew Hope, the Marquarts and Woods have come together to donate and raise more than $175,000 for the Ulman Cancer Fund. Their commitment to building relationships has decreased the alienation Olivia has felt, and created stronger connections throughout their community. It has enabled the Ulman

 

Cancer Fund to expand the programs through which we fulfill our mission of creating communities of support for young adults, and their families, facing cancer.

Marjorie, Olivia, and Keri

Both Olivia and Samantha have been able to extend their communities beyond the Back Mountain through UCF’s Key to Keys program. Each sister has participated in the experience, driving or bicycling to Key West with a group of strangers who, over eight days and 1,200 miles, become family. They have created cherished memories of riding into Key West and sharing dedications with their teams, which empower them when recalled on tough days. Through Key to Keys, they have each committed to supporting their newfound friends, and have received invaluable companionship and encouragement back in return.

Margaret Mead is often quoted as having said “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” At UCF, we are so grateful for this small group of committed people, and we have no doubt that they will change the world for countless young adults well into the future.

 

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Cristal’s Story – BE Courageous

Meet Cristal! Born and raised in the suburbs of Chicago, Cristal is a spunky, resilient and big-hearted, daughter, sister, student and inspiration to many.

Cristal’s cancer story began during a college semester abroad in Spain. In the middle of her experience, she began to experience intense pain in her abdomen. She found a local doctor who told her that she needed to go home immediately. When she returned home, Cristal learned she had stage 3 Ewing Sarcoma – a rare and aggressive form of bone cancer. She was pulled away from her peer group, and put through an aggressive treatment that included 17 rounds of chemotherapy, 6 weeks of daily radiation, a major tumor debulking surgery and a lot of time spent in the hospital due to cancer treatment and surgical complications such as a bowel obstruction. It was a quick and scary switch from frolicking the streets of Salamanca, Spain to spending time in a hospital bed fighting for her life.

Throughout this entire process, Cristal never lost sight of her goal of graduating. With an incredible amount of resilience and determination, along with the support of her university, family and friends, she returned to school and graduated a year later, becoming the first in her family to earn a college degree!

Once she was given a clean bill of health, Cristal became determined to reclaim her body after her Cancer experience. She found out about UCF’s Cancer to 5K program – a free 12-week training program for cancer survivors.  Given the opportunity to meet and train with other survivors, Cristal flourished and showed the world that she not only kicked cancer’s butt, but could also run a 5K!

Upon crossing the finish line, Cristal met a member of the UCF staff who suggested she look into the 4K for Cancer program and bike across the country. She initially thought this was inconceivable, but by that June, Cristal had fundraised more than $4,500 for the Ulman Cancer Fund, was well-trained, and ready to start her journey.  With 18 strangers, she hit the road – on her bike – heading out across the United States to support other young adults with cancer.

Cristal’s 4K journey was not an easy one, but it was undoubtedly incredible. She struggled in the beginning, learning how to push her body in a manageable way and how to make friends with these strangers who didn’t know her story yet. Having been isolated from friends and classmates during the two years she was in treatment, Cristal had become apprehensive about interacting with people in her own age group. Her 4K team became a supportive community that allowed Cristal to, in her own words, “catch up” with her peers.

Cristal was tested by times of frustration and challenge, but when asked why she was biking across the country, she would always say the same thing; to show other young adults with cancer that something like this is possible. You can survive and you can take your life back.

Throughout those 70 days, Cristal grew in a multitude of ways. She became an incredibly strong rider. She learned that she had to be patient with her body, but that she could in fact do this. She became one of the fastest riders on the team. She even gained the nickname “Hill Doctor” due to her awesome ability to conquer steep hills at impressive speeds. Even more incredible, however, was how Cristal changed as a person. She began opening up about her story and her struggles in ways she hadn’t done before.

While riding on the long roads of Idaho or Nebraska she would tell her teammates about what she went through and the people she met in the hospital and support groups, who inspired her to fight back against cancer. Each day, she dedicated her ride to a long list of people, including those who had fought cancer, were still fighting, or who had lost their battle. She created lasting bonds with her team, who supported and leaned on each other every second of their journey. One day of the ride, each member of the team surprised Cristal by dedicating their day to her.

While on the 4K, Cristal celebrated one year of being cancer free – her “Cancer-versary” as she called it. It is a testament to her persistence and strength that she was conquering this journey less than a year out of treatment. Throughout the 70 days of the 4K for Cancer, Cristal laughed and cried, fixed flat tires, and danced her way up hills.  On August 12th, she rode across the Golden Gate Bridge next to 18 of her best friends, officially completing her 4,000 mile journey from coast to coast.

The programs of the Ulman Cancer Fund for Young Adults helped Cristal to reboot her life after cancer, changing her perspective and connecting her with a community of support that became her family.

Donate to Be Day https://tinyurl.com/y8btb4mz

Josh’s Story

Josh’s Story

Josh Minton thought he was invincible. A 27-year-old Army Captain in peak physical condition, Josh had already been through what he thought would be the biggest challenges of his life – four years at West Point and a tour of duty in Afghanistan as a Field Artillery Officer – and he survived both with aplomb. Engaged to be married, with a clear path forward in the Army, Josh planned confidently for his future.

While training at Fort Still in Oklahoma, Josh got checked out for what he thought must be a kidney stone. To his great surprise, he instead received a diagnosis of an incurable form of neuroendocrine cancer. He shipped off to Walter Reed National Military Medical Center, leaving behind his comrades and far from his roots in Ohio. He withdrew from the world and separated from his fiancée, in denial about his new reality.

Over the next six months of chemo and self-imposed isolation, Josh processed his situation and little by little began to shift his perspective. He learned about the young adult support group at Walter Reed, run by UCF Patient Navigator Meg Fitzgibbons, and decided to give it a try. He found the group to be dynamic and flexible, and enjoyed sharing awkward moments of hilarity as well as poignant and sad reflections with his new peers.

 

Josh now reflects that the emotional challenge he continues to face is harder than any physical or tactical task he has encountered. Getting support from people at UCF and Walter Reed who could truly empathize with him, Josh – ever stubborn – rallied and decided to give support to others. He has shepherded fellow officers and enlisted through their cancer experiences, developing relationships he knew would end in heartbreak, but having the courage to do it anyway. He has completed physical feats – a half marathon, a60-mile walk, and UCF’s Key to Keys – to keep perspective, focus on the positive, and honor those who have gone before him. He has taught high school students how to be there for their friends who have cancer or chronic illnesses, and addressed elected officials at a Cancer Moonshot summit.

His body may not be invincible, but his spirit surely is. Josh, we salute you!

Donate to Be Day https://tinyurl.com/y8btb4mz

MJ’s Story

MJ’s Story

Meet the newest member of UCF’s Body of Young Adult Advisors (BOYAA): Marissa Hayes, also known as MJ.  Through her BOYAA service, MJ is poised to be the epitome of one of our organizational pillars: giving and getting support. Coming to BOYAA as the recipient of its 2017 scholarship, she quickly came to appreciate the community BOYAA creates and signed on to help raise funds to award future scholarships, and to give hope to other young adult survivors by sharing her story.

The fourth of seven siblings, MJ has, by necessity, learned to fend for herself. When she experienced consistent shoulder pain that she couldn’t chalk up to wakeboarding or perfecting her round-off/back handspring/back tuck combo, she persisted in seeking an answer after being told by several practitioners that she just needed physical therapy. While finally meeting with an orthopaedic cancer specialist, she received the news – alone, at 18 – that she had Ewing sarcoma.

MJ moved from Oregon, where she was enrolled at Oregon State University, to San Francisco, to seek treatment. She endured a year of chemotherapy and radiation, with some harsh side effects. Choosing this path of treatment instead of surgery, however, enabled MJ to continue as a Formula 3 driver – ultimately ranking 8th out of 40 in her nation-wide class!

As is UCF tradition, MJ has turned her frustrations into action. Feeling out of place in the pediatric hospital, she got involved with its AYA youth advisory council and social group. Inspired by a few of her caregivers, MJ has set her sights on becoming an acute care pediatric nurse practitioner – a position that will enable her to work specifically with the AYA population. Bolstered by the UCF scholarship, MJ is now enrolled in an 18-month program at theJohns Hopkins School of Nursing. Strengthened by the support she is currently getting from UCF, there’s no telling how much support she will ultimately give to others.

Thanksgiving & Coping

Turkey Dinner

by Sharon Curran, RN, #facingtheissues

Over the years, at times it’s been hard to think about that year without feeling anxious and sad.

Ten years ago this week on the eve of Thanksgiving, my then 20 year old was diagnosed with cancer. We set up the Christmas tree and spent time with family and friends in between consults with oncologists. By Christmas, my son’s physical pain was peaking and his breathing was strained. Thankfully chemotherapy began just after the New Year when an infection cleared. After three surgeries, an inpatient stay for another infection, four months of chemotherapy and a month of radiation, he was cancer free. Since its Thanksgiving, I want to express how grateful I am for my son’s recovery.

I do recall how difficult that year was for my family and I, especially for my son. Over the years, at times it’s been hard to think about that year without feeling anxious and sad. Admittedly, I am filled with gratitude for the positive outcome that my son and our family had related to his cancer experience. I reflect on how fortunate we were with some degree of survivor’s guilt, understanding the losses that others experience due their cancer diagnosis is far greater.

During my nursing graduate school studies, I learned of the “Theory of Chronic Sorrow” which was developed and published in 1998 by three nurses, M. L. Burkes, G. G. Eakes, M. A. Hainsworth.

The theory provides a framework for understanding and working with people following a single or ongoing loss (Eakes GG, 1998). The theory is useful for analyzing individual responses of people experiencing ongoing disparity due to chronic illness, caregiving responsibilities, loss of the “perfect” child, or bereavement (Eakes GG, 1998). Nurses need to view chronic sorrow as a normal response to loss and, when it is triggered, provide support by fostering positive coping strategies and assuming roles that increase comfort (Eakes GG, 1998). With an understanding of chronic sorrow, nurses can plan interventions that recognize it as a normal reaction, promote healthy adaptation, and provide empathetic support.

I wanted to share this information with anyone reading the UCF website as I believe there are many cancer survivors and cancer caregivers who might relate to this experience. I hope some of you will comment describing your story, hoping that in sharing, it may help you or other’s cope with periodic sadness, grief, or anxiety that you experience.

Theory of Chronic Sorrow

Eakes, G.G.,Burke, M.L., & Hainsworth, M.A. (1998). Date of last revision September 19, 2013.

Introduction

  • Theory of chronic sorrow was developed by Georgene Gaskill Eakes, Mary Lermann Burke and Margaret A. Hainsworth in 1998.
  • Other related theories – Kubler-Ross (1969), Bowlby (1980)
  • Theory explains the ongoing feelings of loss that arise from illness, debilitation, or death.
  • This theory provides a framework to describe the reaction of parents to the ongoing losses associated with caring for a child with chronic illness or disability (Scornaienchi JM, 2003)
  • Nurses caring for families need to be aware of the high potential for chronic sorrow to occur in persons with chronic conditions, their family caregivers, and bereaved persons. (Eakes GG, 1999).

Concepts

  • Chronic Sorrow: The periodic recurrence of permanent, pervasive sadness or other grief related feeling associated with a significant loss. (Eakes GG, 1998).
  • Disparity: Refers to the difference between the ideal and the real situation due to some type of loss.
  • Loss: A significant loss that may be ongoing or a single event.
  • Antecedents (Gorden J, 2009): First antecedent is initiated when a single event of a living loss is experienced e.g. onset or time of diagnosis of chronic illness. Second antecedent to chronic sorrow is unresolved disparity resulting from the loss.
  • Tiggers: Events which prompt the recognition of a negative disparity in the disabled loved one or loss which brings out sadness again.
  • Internal Management Methods:  Individualized coping interventions initiated by the person experiencing chronic sorrow (Gordon J, 2009).
  • External Management Methods: Interventions provided by medical professionals to aid in effective coping (Gordon J, 2009). Examples include – Professional counseling, Pharmaceutical Interventions, Pastoral Care or Spiritual Support, Therapeutic Communication, and Referral Services.

Conclusion

  • Theory is useful for analyzing individual responses of people experiencing ongoing disparity due to chronic illness, caregiving responsibilities, loss of the “perfect” child, or bereavement (Eakes GG, 1998).
  • Nurses need to view chronic sorrow as a normal response to loss and, when it is triggered, provide support by fostering positive coping strategies and assuming roles that increase comfort (Eakes GG, 1998)
  • With an understanding of chronic sorrow, nurses can plan interventions that recognize it as a normal reaction, promote healthy adaptation, and provide empathetic support.

References

  1. Eakes, G.G., Burke, M.L., & Hainsworth, M.A. (1998). Middle range theory of chronic sorrow. Image: Journal of Nursing Scholarship, 30(2), 179-183.
  2. Eakes, G.G., Burke, M.L., & Hainsworth, M.A. 1999) Milestones of Chronic Sorrow: Perspectives of Chronically Ill and Bereaved Persons
    and Family Caregivers. Journal of Family Nursing, 5(4), 374-38
  3. Scornaienchi JM (2003) . Chronic sorrow: one mother’s experience with two children with lissencephaly. J Pediatr Health Care. Nov Dec;17(6):290-4.
  4. Gordon J ( 2009). An evidence-based approach for supporting parents experiencing chronic sorrow. Pediatr Nurs.35(2):115-119.

 

http://nursingplanet.com/nursing_models/theory_of_chronic_sorrow.html

Unexpected Good Luck

stpatty_graphic_big“Who says cancer can’t be my good luck charm?”

-Cassandra Burke, Cancer To 5k & Half Full participant

 Happy St. Patrick’s Day! Cassandra Burke is a breast cancer survivor who recognizes that, despite her diagnosis, there has been plenty of good luck involved in her fight. In the spirit of St. Patrick’s Day, she shares her story with us:

“Luck is not often a word associated with cancer. And while I’m not sure luck is the best word to describe the power of what a cancer diagnosis has given me, in the spirit of St. Patrick’s Day I find myself compelled to use it.

If you had asked me on October 7, 2010 if I felt lucky, you probably would not have liked the answer.  On that day and the months ahead, luck was the farthest thing from what I felt.  Fast forward three years….my perspective is drastically different.

I am lucky that I have family and friends that wrapped themselves around me and held on tight.  I’m also lucky to have neighbors who wrapped our family in the warmest hug – cleaning our house, cooking our meals, driving me to appointments, providing play dates and transportation for our daughter when I needed to be in the hospital.  It was almost five months before I cooked a meal.  In that time, neighbors and community members we had never met, who only knew us by name or heard of us through someone else, became caregivers for our family.

One day, as luck would have it, I was at BJ’s picking up some items for our family.  As I stood in the checkout line laughing with the cashier (if you knew me, you’d know that I can often be heard laughing for miles), a woman approached me.  I had on a Vera Bradley breast cancer scarf on my bald head.  She asked me if I was a breast cancer survivor.  I told her I was.  She told me that she was too.  There in the aisle we began a conversation that lasted almost an hour.

That Sunday in church, a family sat a couple pews in front of us.  From the back, I recognized the woman as someone I had pointed out to my husband several months prior.  Sometimes she came with her family.  Sometimes she didn’t.  When she did, she usually wore a scarf.  I often prayed for her and her family.  This particular day as she turned her head, I realized she was the woman from the BJ’s encounter.  Before I had a chance to approach her after mass, she was gone.

Several days later, I ran into her again at my daughter’s elementary school.  One of her children was in his last year at the same school.  Was this luck?  I think so.  I was lucky that she approached me that day at the store.  Had I not had cancer, I would not have been wearing that scarf.  Had I not been wearing that scarf, she would have never approached me.  Would we have met?  Possibly.  Would we have connected in a way that has bonded us for life?  I don’t think so.  Would I have missed out on having this friend in my life? Absolutely!

Being diagnosed with cancer brought many more positives than it did negatives to my life.  I’ve always been one of those burn-the-candle-at-both-ends kinds of people.  You know the girls that had the color-coded day planners before we had iPhones with calendars.  My life was completely overextended, both personally and professionally.  When I heard the words You Have Cancer that day, it took me about fifteen minutes to say no to it all! Cancer did that for me.  It gave me perspective.

My husband and I have always embraced the belief that cancer found me for a reason.  It set me on a path that was different from the one I was traveling on at that point.  Cancer gave me the ability to recognize my own strength.  It allowed me to see the selflessness in others. It allowed me to step back, gain new perspective and realize that I had a purpose in this life that I hadn’t yet found.  And while I’m still trying to figure out what that purpose is, I was given a small glimpse almost a year to the day of my diagnosis.

I couldn’t believe I was hearing those words again.  It was as if all the emotions and fears that I had spent a year working through came rushing back.   Within a few days, we were in my surgeon’s office sitting at the same table where I sat at almost a year ago.  I watched in disbelief as she began drawing pictures and talking pathology.  Was I really sitting here listening to this again?  Surgery options, post-surgery options, scars and reconstruction.  Appointments with my plastic surgeon followed.  A post-surgery appointment with my oncologist was scheduled.  What was going on?  It was déjà vu.  Driving through the hospital gate, parking in the lot, walking the halls of the hospital….There was really only one difference.  This time, I wasn’t the patient.  The patient was one of my friends.  She was diagnosed just two weeks shy of the one year anniversary of my diagnosis.  The day that she had surgery, I actually had my fourteenth Herceptin treatment.   After I finished my Herceptin treatment, I went upstairs to keep her company post-surgery.  And there was that luck again, a glimpse into my reason.  I was lucky I had amazing doctors.  I was lucky that I knew exactly what do to help her when she heard those words.  I was lucky that my experience could be the hope for someone else.  It had all come full circle that day.

Cancer is a word that people react to differently.  My family chose to embrace our diagnosis (and it is our family’s diagnosis, not just mine).  We celebrate what I call my Cancer-versary.  Every October 7, we celebrate the day.  It’s a day of hope.  A day that with each passing year allows me to look back at the strength I’ve gained since that day.  It’s a day to celebrate all that I’ve accomplished since treatment and a day to look forward to the path ahead.

I’ve never asked Why did I get cancer?  Some may find that odd.  In the three years since my diagnosis, I’ve had a variety of experiences that have begun to help answer that question.  Do I look at cancer as my good luck charm?  In a way.  It’s changed my life for the better.  It’s returned my perspective to focus on what is important in life.  It’s taken me to the abyss of darkness and allowed me to climb to new heights.  But, if I had to give you one reason why I truly believe that it was lucky that I was diagnosed with cancer, I’d have to say cancer gave me the freedom to stop dwelling on creating a perfect life.  Today, I live my life to the fullest….I’m one of the lucky ones.

This St. Patrick’s Day we encourage you to spread some good luck to your families, friends and those you know who are impacted by cancer. Take some time today to share how lucky you feel to have someone in your life. Or help UCF spread good luck by volunteering for one of our many life changing programs – deliver ChemoCare Bags to cancer centers, support survivors as they are reintroduced to physical activity (CancerTo5k), or lend a helping hand during one of our many events. Contact kim@ulmanfund.org for more details.

Cancer Changes Lives…So Do We!

Please share this story! If you are interested in writing for UCF and sharing how you have been affected by cancer please contact sean@ulmanfund.org.

Miracle on the Tundra?

On May 19th 2008 , I ran the Green Bay marathon with my running partner Jan and our friend Vince.  Vince is a  friend of Jan’s husband Jim from way back.  This one was going to be Jan’s first marathon since her pancreas removal surgery in January so looking for any positives , we realized the removal of the organ would make her lighter on her feet and a favorite in the female non pancreas division.

We all met in the hotel conference room Sunday morning for breakfast.  Jan was debating if she should get something else to eat,  I said yes, if in doubt eat and the higher the sugar level the better. Maybe it was being in Green Bay, getting ready to head to Lambeau Field, Vince Lombardi….  That inspired me to give Vince a pep talk.  As Jan was finding something to eat, I looked at Vince and said We have no chance.  His momentary pause and response of What! Made me think wrong speech.  I explained that we can’t even make it through a 4 mile run,  how can we make it through 26.2.  He said really,  I repeated we have no chance.  However,  I would never bet against her so there was still a part of me that thought it was possible, hence the miracle word in the subject line.

We went to the atrium at the stadium and hung out. The normal routine.  Bathroom line, stay warm and then head to start.  Women much more efficient in bathroom then men.  Vince did his best Diana Ross routine by changing running outfit 3 times those last 10 minutes.  That last one was almost costly as he headed to car and headed right back to atrium but we couldn’t find him.   As we were waiting for him to come back Jan and I noticed 2 young women, shorts, jog bras, long flowing hair, bopping towards the door, heading to the start.  I looked at Jan in old gray sweatshirt, arms crossed trying to keep warm,  oh yeah my confidence was at an all time high.  Between Vince not being able to figure out what to wear and Jan looking outside like it was Mount Everest, things weren’t looking good.  Finally with 5 minutes to go before the start, Jan and I headed for the start.   We were near the back of the pack when we finally saw Vince,  luckily the sun came out, reflection from my head worked as a flare for Vince to find us.

The gun went off and off we went.  Nice and slow was the plan.  We had the continuous monitoring system so between that and 10 packs of Sport Beans, plenty of water stops we were set.   At the start sugar level was at 200 and every half hour she was going to have a pack of beans.  I made a contact on the web who told me about this device but more importantly told me that sport beans was his preference for fuel replenishment and how much he took.  This really help Jan who normally  takes in minimal fluids.

I looked at Jan and knew the look well enough that at mile 1 then 2 that she had that oh shit, how’s this going to work.  At around mile 7 there were a group of people holding up a sign that said, Chuck Norris wouldn’t quit,  I went over to talk with them and one women said can we have some high fives,  I said, you can have whatever you want.  Boy, I hate people that can’t handle their endorphins.

At mile 10 Jan found her groove,  again groove is a relative term but we had a flow going.  Vince and I kept chatting, Jan kept running.     Sugar level still in the 160-170 range and no alarms from the unit, sports beans every ½ hour,  gatorade at every water stop.  Things looking up.

Things continued like that for a bit and there was no temptation to go left with the half marathoners when the moment of no return came upon us.  Why make a left and finish when you can make a right into an industrial park with no spectators, and sparse amount of runners and 16 miles to go.  But it was 26.2 miles or die trying,  a bit worried about the literal translation of that but always fun when the stakes are higher.

At mile 17 we loop around and under a bridge.  I look up and see someone who looks very familiar.  After a few seconds, she says Andy,  she was from the first time marathon program, which is funny because this was her 40th marathon.  She said what are you doing back here,  Poor Jan,  she explained to Vince here we go again,  Andy has to explain why he’s back here running with a loser.   I told Karen, my friend has cancer and she just had her pancreas removed Monday, whoops,  I mean January.  I think she was more impressed when she thought it was removed Monday.  Anyway, it was great to see a familiar face and she and her friend were at the finish waiting for us and cheered loudly for us.  Karen hugged Jan, congratulated her, it was very supportive as all runners tend to be.  Ironically Jan encouraged Karen’s friend earlier and recognized her at the finish.

About mile 18 sugar began dropping,   Jan mentioned levels going down,  I suggested a less dramatic, oh they’re decreasing maybe we should do something.   How valuable has this monitoring system become.  She drank OJ, another packet of jelly beans but our best range was now in the 115-125 and we just needed to maintain it there.  The wall was coming if not already here.  But at that moment we saw Vince’s family coming down the trail, and nothing is more exciting than seeing one family.    We had seen them earlier but this time the timing and boost was great.  A couple a miles later we saw them at mile 20,  and I got revenge I have been seeking for 5 years!

Vince’s family was there also, waiting for us.   Jan was talking with Sue and the boys and I barged in and said, enough of this chit chat we’re here to Finish a marathon. I think Sue was a bit thrown by this tough love approach.  J   Back in 2003, at mile 23 at the NYC marathon I was so done,  my wife gave me a nice hug,  I didn’t want to finish.  Jan yelled, enough lets go already.  She was right but I was going to have my payback and this was it!!!

The final 6.2 and this was going to be tough.    I suggested we switch to a run walk and I’ll let you know when we should run and then walk.   She said ok.  This really concerned me.   In most cases that would be comforting when someone agrees to being told what to do, with Jan NOT COMFORTING.     But it worked out and then the most amazing rootbeer I ever tasted was at a water stop.  Jan and I split one and then we continued on.  Sugar levels still in the 115-120 level.   The last 2-3 miles I felt like I was part of an Indy 500 pit crew.  When they have 10 laps to go and don’t know if there is enough fuel in the tank.  In this case,  I was thinking will the sugar levels bottom out before we get to the finish.  I handed her one last pack of Jelly Beans knowing it would last the 20 minutes we had left in the race.  Told he just get this down and no more Gatorade.  She agreed.

As tough as the last few miles were, it was the most rewarding and fun.   At that pace you know people are here for the fun of it.   I saw one girl asking someone if there was a restroom at a shop , I yelled its going to hurt your time, and her friend said better then having her poop on her leg.  Can’t argue with that.  The two of them caught up to us and she made a point of letting me know it didn’t hurt their time in a joking way.

Lambeau Field –  There it was and we were about to run through the players tunnel  and as we got to the field We are the Champions was playing on the loud speaker.  As we made our loop around the field, I had such goose bumps.  I couldn’t imagine how it would feel to enter the field with 60,000 people screaming, it was unbelievable even with the few spectators on the bleachers.   Later on Sue pointed out that they were much more crowded earlier.  I wasn’t the only one with motivation speech issues.

Andy Steinfeld
We crossed the finish and mission was accomplished. Was it a miracle, a bit dramatic, but if you saw how the 3 of us worked together as a team,  you wouldn’t of been surprised that we got it done.

Another marathon in the books, another unique story.

As Jan and I headed to our plane,  I decided to carry her bag as I knew how tired she was. She said, you know I can carry my own bag and I said but you just ran a hard marathon. She said, “You did too.”  I responded, “But I’m a trained athlete” and she finished the sentence “Oh yeah, I’m the loser runner” and this allowed me to put my finger up  towards her face with the Big L. We both know that the truth is somewhere between these 2 extremes.  I think that’s been our secret to being a good running team,  not get caught up in the inspiration of the accomplishment but to be able to laugh about the circumstances and just run because we love it.  Although the cancer topic is always there, maybe not spoken, but  its there.  A run where there is no worry about cancer,  now that’s a miracle.

– Andy Steinfeld

Andy Steinfeld is a Road Runners Association of America (RRCA) certified coach and avid runner. His list of endurance event accomplishments include 27 marathons, six ultra marathons and an IronMan. Andy has worked with numerous running clubs and charitable organizations in their endurance event programs, including serving as the co-director of the First Time Marathon (FTM) program with the Montgomery County Road Runner Club (MCRRC) from 2007-2011. He received the coach of the year award from MCRRC for his work with FTM in 2010. This spring Andy became a sherpa and coach for the Cancer to 5K Montgomery County team. He is extremely passionate about the combination of coaching people with cancer-related health obstacles who want to achieve running goals.  His running partner for the past 11 years has neuroendocrine tumors (net) and the two have run nine marathons together.

Survivor, I thought, that was going to be me

My first interaction with The Ulman Cancer Fund (UCF) was not as a survivor but as a supporter. I found out about UCF when I signed up for its inaugural Half Full Triathlon in 2010. After watching my dad go through cancer the year before I leapt at any opportunity to raise money and awareness for those battling this awful disease. UCF was a great organization to support at that time; it put its money into programs that directly impact cancer patients, survivors and their families, what more could I ask for?

Katie is a breast cancer survivor, Team Fight member and UCF Supporter!

Fast-forward about 6 months, to March of 2011. I, Katie Anderson, 28-year-old triathlete and marathon runner was diagnosed with breast cancer. Getting diagnosed with cancer at such a young age was terrifying, isolating and mind-boggling. I had no idea that you could get breast cancer that young, especially when I felt like I was doing everything I could to live a healthy life. After the initial fear, turmoil and distress subsided, I thought back to that amazing triathlon, Half Full, that I participated in 6 months prior, where I competed alongside cancer survivors. Survivor, I thought, that was going to be me. I was going to beat this deadly disease and get back out there. From that point forward, I began to look at my journey half full.

Katie biking at the Half Full Triathlon

While the road was tough and painful, both emotionally and physically, I did just that. Despite facing a mastectomy and several other surgeries, I set my mind on participating in Half Full again, so that I could raise money and awareness for those battling cancer. Competing in a race dedicated to cancer patients, survivors and families gave me something to work towards, something to look forward to.

Despite my multiple surgeries, I did it. I got back out there and competed in Half Full in 2012. After this race, and learning more about how UCF supports young cancer patients like myself and their families through programs like Cancer to 5K and patient navigators, I jumped full force into UCF activities and haven’t looked back since. In the past year, I have started volunteering with Cancer to 5K and have also joined Team Fight. Both of these programs have led me to other cancer survivors, which is a great support to me as a 30-year-old who still faces fears of recurrence and daily aches and pains. These programs also allow me to combine my passion for competing in endurance races and my need to give back to the cancer community.

Katie

I hope that you too will decide to give back to the cancer community and support a great organization that supports so many young cancer patients, survivors and their families. As a survivor, The Ulman Cancer Fund has given me a support group to lean on and raise awareness with. Join me in this great fight!

Sincerely,

Katie's Signature

Katie Anderson

Remembering To Look Back

I had always thought of the scar on my chest as my scarlet letter. The scar that was once site of such a bad port infection that doctors used me as their  “worst case scenario” exhibit, but now it’s the scar that people most tend to think is a hickey. When my treatment ended in 2005 I didn’t want to look back. I did what I had to do to be a normal 13-year-old. I went through chemo, had blood transfusions, spinal taps, dealt with a bald head and chipmunk cheeks from steroids. When I was given the all-clear from my oncologist that was it, the cancer chapter was finished.

It wasn’t until 2008, right before I was graduating high school that it hit me; I am a cancer survivor. I never went to a support group or met other patients or survivors. I never absorbed what was going on around me. I just looked straight ahead.

In the midst of college applications I decided I was going to Montana to a cancer camp. This was completely out of my comfort zone, but I knew it was something I had to do.

It was there that it clicked. I watched as a young adult with a prosthetic leg climb a rock wall faster than me, a survivor in a wheel chair laugh hysterically when his door-prize was a jump rope, and stood by as a patient had every strand of her long hair shaved off by a beautiful bald survivor.

It was that week that I absorbed. It was that week that the scarlet letter on my chest started to transform into a badge of honor.

It’s weird how things work out sometimes….

My second day at Ulman I met a 13-year-old girl going through treatment and learned the4K stopped at the camp I attended in Montana. I listened to a fellow survivor speak and motivate a room full of people.

I wasn’t diagnosed as a young adult, but I am a young adult and I am a cancer survivor.

I’ve never been shy or uncomfortable to share my story; I just chose to avoid the sad faces and generic remarks. Although, at times, when a stranger would congratulate me on such a hickey, I loved throwing them off.

But, here at Ulman I was reminded on my first day that everyone here gets it. Whether it’s someone in the office, a Team Fighter, a 4Ker, a volunteer…someone gets it. And when they don’t know right thing to say, there’s no generic lines because they get that sometimes saying nothing means more.

So, during my Year of Service I will not only absorb, but I will share. I will share my story, learn from others, and continue to look ahead. But this time I’m remembering to look back.

Samantha Powell

UCF Year of Service Fellow