Moving Mountains for Multiple Myeloma (MM4MM) is a collaboration between CURE Media Group and the Multiple Myeloma Research Foundation to raise awareness

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It is finally here! For months we have been counting down the days until Iceland!

As soon as the team reassembled, it was like we picked up right where we left off on the training hike! After navigating the airport we took a shuttle to our hotel right in the heart of Reykjavik. We walked around the city and had lunch at a cute little cafe. The fish and chips was delicious!.

It is hard to put into words how beautiful this city is: fresh air, sunshine and something new to look at on every corner. Most of the team took a redeye flight so we were pretty exhausted and decided to head back to the hotel for a quick nap. We then walked to dinner and window shopped along the way. We had a dinner of pasta and pizza. Carb loading was a must for tomorrow’s trek! We headed back to the hotel to pack our bags for the big adventure.

Overall the team is so excited to be together and we can’t wait for the journey we will take over the next few days!

My father would have loved to see and hear about this trip. He would have thought I was crazy for wanting to go somewhere cold! I choked up at dinner when telling my reason for being part of the trek to my teammates because I love to tell his story.

I am so honored to be a part of this team and form bonds that will be for life.

With that I will say goodnight, even though it does not ever get really dark in Iceland during the summer.

Next stop to move mountains!

Eat, Sleep, Hike

I’ve never done anything like this before. There are so many aspects of this that I’ve never done before. So how do you prepare for something that you’ve never done, and has so many variables? You just do it, because it matters so much.

When my best friend from college, who has been battling multiple myeloma for a decade, called and asked me to join him on the Moving Mountains for Multiple Myeloma Fire and Ice Trek across Iceland, I jumped at the chance. Well, maybe crawled at the chance. The opportunity to spend this time with my friend, the opportunity to raise funds for his care and research for finding a cure for his awful disease, was something I didn’t want to pass up. Going this far from home, away from my family and business, to a place I’ve only heard of but knew nothing about, was daunting.

Here we are, just weeks from heading out on this trek, and the question sitting heavy on my mind is, “Am I ready?” How do I know if I’m prepared for something like this? Physically, I know I’m ready. I am an avid trail runner in the beautiful mountains of Colorado. Knowing I can run 15 miles at 8500’ altitude assures me that I can handle the trek. But there are so many differences.

Look at the name of this trek. Fire and Ice. Where does that come from? We will be crossing lava fields in Iceland (fire), and camping sandwiched between two glaciers (ice). Temperatures will be in the 50’s or 60’s, maybe 70’s. It’ll be raining, unless it’s hailing, except when it’s sunny. How do you stay dry, warm, cool, and comfortable in all of those situations?

Fortunately, we have help. The guides that the MMRF are providing with us have prepared us well. I have my Solomon boots, my Osprey pack, my LuLu layers and my NorthFace and Patagonia jackets. My extensive packing list has check marks next to every item. I think I’m ready.

Now, to prepare mentally. I’m not a camper, I like my luxuries and conveniences. I know my body is ready. I know my backpack is ready. Fortunately, the WHY behind this trip is so much bigger than the WHAT. Shoes, socks, jackets, hats...none of the “whats” that I’m bringing really matter when held up to the purpose of why I’m going. I’m spending invaluable time with my best friend of 24 years. I’m helping him raise funds and awareness that will serve him and serve future multiple myeloma patients.

So how do you prepare for Fire and Ice? You do the best you can with the amazing guidance the MMRF provides, you gain perspective, and you get on the plane!

 How Do You Prepare For Fire and Ice?

I like my sleep. It is surprising that having spent a 23-hour day of travel (yesterday and early this morning) to get home here in Western New York after our Fire and Ice Trek in Iceland that I am able to put words together for this blog. I am however, feeling compelled to do so because of what needs to be shared.

First of all, the presence of a divine blessing permeated our team experience. Our training hike in June initiated a sense of purpose and belonging that was palpable. That beginning was only enhanced as we gathered in Reykjavik and looked forward to our hike. I think we all felt excited and happy. Multiple myeloma is a terrible disease but the tragedy that brought us together was going to be overcome by our hopes and commitment.

Secondly, the weather we encountered was perfect. Oh, it was chilly and sometimes windy and bone-cold but the sun was out for us each day. Blue skies were an appropriate companion for how we felt. The challenges were real. The trek demanded hard work and concentration as we carried our packs up and over mountains, across snowfields and rocky paths near steep drop-offs. Through it all, we kept a very positive outlook and took care of each other with genuine compassion.

Thirdly, I think our journey taught us individually and collectively life lessons that were and will continue to be invaluable. Personally, I learned the hard lesson of humility. I wanted to be able to keep up with those on the team much younger than myself - but couldn’t. At 66 years old and a veteran of the battle with multiple myeloma I have changed. I took my training for this event seriously but my lungs just couldn’t keep my oxygen levels at a comfortable level on the uphill slogs. I had to slow down. When they offered, I allowed our guides to carry my pack on the second day when the trail was mostly uphill. I was reminded of the scriptural admonition “Pride goes before the fall.” I considered how true those words were for me as I focused on keeping upright.

Everything came together in a magical moment as we approached our finish line - the Skogarfoss Waterfall. Not as high or wide as Niagara Falls but Skogarfoss offered a unique experience. We walked right up to the falls itself and got as wet as we wanted. The amazing moment was enhanced by the appearance of a rainbow! This rainbow was not a mile high – it seemed to hover right over our group! While my body was sore and tired, I felt a surge of energy as we were lifted together in a moment that will never be repeated.

The finish line of our trek was a celebration that included a sense of accomplishment. Not only for having finished the hike but also that our team raised over $208,000 for research to combat multiple myeloma. That total continues to grow. Other finish lines are ahead. A new school year, children growing up, jobs and for me a continuing journey with multiple myeloma. Until a cure is found I will remain focused on what will unfold for my life and the challenges of living with this disease. For today, I am thankful for each and every member of the 2019 Fire and Ice Team. I would like to thank Adventure Fundraising and Moving Mountains for Multiple Myeloma. I am thankful for generous sponsors like GSK that underwrote the event as well as Celgene, MMRF and CURE.
P.S. The Finish Line at Skogarfoss has given me a new appreciation of the land and the earth we live on. The magnificent snowfields and glaciers of Iceland are melting. Where last year there were thick fields of snow this year there was bare ground. Our guides who traveled the same route last year as we did this year were astounded at the changes. My humble opinion is that we all need to work together not just as Americans but citizens of this earth to do what we can to keep the ice in Iceland.



The Finish Line

I chose to come to work at GSK as global lead for patient advocacy for the company’s special purpose: to help patients do more, feel better and live longer. I was honored – and a little bit surprised – when I was asked to participate in the Iceland trek. Don’t get me wrong – the trek ties nicely into my role leading GSK’s oncology patient advocacy efforts but having never completed a hike as intense as this one, I must admit that I had my doubts on whether I was the right person and whether I would make it to the end. Ultimately, I decided to do the trek in honor of my stepmother and the bravery she displayed in her battle with cancer.

My stepmother was diagnosed last June with stage 4 T-cell lymphoma and had a short and ferocious fight with the illness. Throughout her ordeal, I could see the peaks and valleys in her outlook. After her diagnosis was finally confirmed, she started chemotherapy which took an extreme toll on her body. Though, even in the lowest of lows her spirits remained high, giving the family hope that she would make it through. She continued to fight on through low platelet counts, infusions, neutropenia and even neuropathy. Although she was the one with cancer, we were very much on the journey with her and trying to support her the best we could. Unfortunately, we lost her after only four months and my family is still grappling with how much of a whirlwind the whole experience was.

Throughout the trek I couldn’t help but think about the metaphorical mountains that my stepmother climbed while she was battling cancer. She confronted unknown terrain but was never alone in her journey. Of course, she had us, her family, but I now realize that she also had the support of a much larger community.

I was so moved by the Moving Mountains for Multiple Myeloma Iceland team, which along with representatives from GSK, included patients, caregivers, family members, a doctor, patient advocates and 

. I realized that just as was the case with my stepmother, that everyone who has been touched by cancer – be it a patient, caregiver, health care provider, friend – are all tied together. Much like our hike through Iceland and the bonds we made during our journey through this “Fire and Ice” landscape, it’s important that no one feels they are fighting cancer on their own. While I was traversing the nearly 25-mile trek, I had the invaluable opportunity to speak with patients, family members and physicians. I heard their experiences firsthand and was inspired by their fighting spirit. These are the conversations I will take back with me to further GSK’s commitment to the community of individuals impacted by multiple myeloma.

 You Are Not Alone

We are one week out from flying to Iceland in preparation for our hike! I am so ready to be reunited with my teammates. Most of us were able to make the training hike back in June, and we bonded so well as a group. We’ve had several team calls and now have a very active GroupMe chat going, and it only makes me more excited for this adventure. I can’t wait to see them so soon.

I signed up for this hike in honor of my mom. This trek will be challenging, and I know her determination and her fighting spirit will spur me on throughout the trip. I know this is something my mom would want to do, but physically it would be too much. I am grateful to be hiking on behalf of her and so many others who are fighting this disease.

I’m making last-minute orders for gear and gathering what I’ve already got. I’m the type of person who starts packing for a trip a few weeks out, and Iceland is no exception. It has been suggested that we bring along snacks for the trail to help keep us motivated between meals. I’m trying to decide what to take!

Ultimately, I am looking forward to this experience for so many reasons. The traveler in me is excited for the adventure and seeing new sights and wonders in a country I’ve never been to but have always wanted to visit.

But there is a bigger piece to this picture: I am looking forward to a cure. For my mom, for my teammates, for the family members and patients of my teammates, for the thousands of others battling this cancer.

Our group is made up of doctors, patients, caregivers and family members. We are a group of people with a connection to multiple myeloma who have become a family. It’s a reminder that no matter who we are or where we’ve come from---we have a common goal of eradicating multiple myeloma. With the support of our friends and family, we are helping the MMRF raise the necessary funds to do that.

Now let’s go hike Iceland!

 The Countdown is ON!

Family. What's your definition of family? I came across one today that states: "Family consists of nurturing relationships with compassion, love and care, and supporting its members during phases of hardship and troubles."

Any of us that have experienced hardships together as a family, especially cancer, can relate to that definition. When the news came that my older brother, John was diagnosed with multiple myeloma three years ago, having more than 80% of the cancer already in his bone marrow, it was time for our family to pull together in love and support. I found myself doing whatever I could to help, which included being able to thoroughly clean his house before he came home with no immune system after his stem cell transplant. I also become a caregiver during that time to give his wife, Bonnie much needed breaks. The hardest part of all of this for me besides not knowing what the outcome of his battle would be, was watching my big brother have to deal with such an incredible amount of pain mostly caused from 10 compression fractures in his spine. It was heartbreaking.

Days go by, and John has fought his battle with multiple myeloma well. The doctors gave John a life expectancy of three, maybe four years, and here we are three-and-a-half years later. We are once again facing something together, only this time it's full of hope and expectation as we are preparing to trek through Iceland for three days to raise funds and awareness for MMRF, as they work to find a cure for multiple myeloma.

It's beyond words how proud I am of my big brother, both as I watched him fight this terrible cancer, and now as I get to share in his victory as he conquers Iceland. Family is not only walking together through the difficult times, but also sharing in the victories and mountain top experiences. What an honor for me to experience both of those with John.

Family

I had absolutely no idea last December when I applied to attend the Iceland Fire and Ice excursion that this would forever change my life. I remember the interview day on the phone with you and then wondering if and hoping that you would pick me to be a part of the team. Then in January, I asked Dr. Martin to sign the release form knowing very well that exercise has not been my recent strength and leaving my house – especially flying on airplanes – lands me in the hospital each and every time. But I kept marching on, planning and learning all I could about this opportunity ahead. The months that followed were filled with so many changes in my personal journey. Repeated hospital stays, adding my Megan to the training hike, losing one of my best friends to cancer just before leaving for training hike, last-minute flight changes, then ultimately losing the Iceland adventure to my upcoming BEAM transplant plan in Arkansas in July. I had no idea what I was really going to be missing, so I just kept marching on.

Fast forward to our training hike weekend. The 2019 Iceland team, now people I will forever call “family” gave me hope and determination that has been dormant these past few years. Once a healthy overactive type A busy mom, athlete, coach, employee, community volunteer and person who hated napping, I have found myself living my days these past three years on my “perch" (aka the chair by the fireplace) living in a bubble – away from germs; napping hours a day often with no relief; walking instead of running; meds, meds and more meds; frequent admissions to the hospital (aka the “slammer”); breaking bones without even a good story to tell; and wondering what my future will look like with this multiple myeloma in my back pocket. That weekend I recognized pieces of the old me that I had almost forgotten existed. I felt safe, but not coddled, tired but able, and filled with hope for 2020.

My Megan, I don’t think I can accurately express my feelings of the love she felt that weekend from all of you. She now has an extended family of sisters, moms, aunties and even a pastor watching out for her. She is strengthened by all of your love.

These next few weeks will be filled with training and prepping for all of us. Just a little different for me. I find myself completely confident in the doctor’s treatment plans, but really just bummed on the effect it will have on the current and future life I have worked so hard to rebuild.

So together, let’s spend these next several weeks training and preparing for our different upcoming journeys, entering our big events with eyes wide open, prepared and ready to take on the world and coming out of it a stronger happier healthier person in every aspect.

My thoughts are simple really. Thankful, grateful and blessed. Thankful for my current and new family of friends and doctors who have given so much of themselves to better my life and the lives of others like me (and John and Erik). Grateful for Jane, Laura, Jen and the MMRF and GSK for their financial support and lifelong dedication to finding a cure for myeloma and to Nina for dedicating her life to helping patients like us. Blessed and filled with hope for the life that still lives within me both in 2020 and may many years ahead. (Jane please accept this as my official application for Iceland 2020).

Team, family and friends: Thanks for taking me with you to Iceland! I can’t wait to do this adventure with you all!

I can’t wait to take this journey with you. You have all strengthened me in so many ways.

 Reflections on the Training Hike

On August 7-11th, our twelfth MM4MM team will venture to Iceland. This group will take on Iceland's otherworldly, challenging landscape. These two-and-a-half days of challenging and spectacular hiking includes an assortment of geological marvels, including volcanoes, glaciers, geysers, hot springs, gorges, lava beds, waterfalls and, of course, mountains. Geothermal activity in the form of steam and green and yellow sulfur coming from the rocks we pass, coupled with the topography, make this mountainous hike otherworldly. After 7-8 hours of rigorous hiking, the team will sleep in mountain huts situated in an incredible setting. This hike is sometimes called "Fire and Ice" because on any given day you hike up lava fields and volcanoes, and then alongside stunning glaciers.

Iceland Trek2019