Pre-Triathlon Speech to ACS DetermiNation Athletes

Last weekend, I was honored to be asked to deliver a speech to athletes raising funds for the American Cancer Society through its DetermiNation training program. These athletes raised more than $200K toward ACS' patient services and research efforts by training for and competing in the New York City triathlon. When asked by Hope Lodge staff if I could talk about my cancer story and Hope Lodge experience, I gladly accepted. My focus was the importance of health, wellness, endurance and appreciation for those who so selflessly give – in many ways – so that this world can be that much closer to cancer-free. I am so grateful to have had the opportunity and am so inspired by these devoted athletes. One day I will be among them.

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Know that the cause you have devoted your efforts to makes a tangible difference in a countless number of ways. Not only do your fundraising efforts help to make an essential facility like Hope Lodge and all of its offerings a reality, but your training efforts help to inspire and encourage cancer patients – and beyond – who may question their abilities to push forward when they hit their own personal walls.

You crossing the finish line today proves what strength, perseverance, determination and sheer willpower can accomplish: lessons every cancer patient needs reminders of during our difficult moments. You’ve given more than dollars to help ensure that cancer patients get a fair chance at treatment, comfort, and cure, you’ve also given the sweat to inspire us.

I am a huge proponent of the importance of health and fitness. At 20 pounds shy of my healthy weight, without hair, and wearing a germ-blocking armor of gloves and a mask, I may not look like someone who can relate to a group of endurance runners. But at one time, I hit the pavement, too. Two days before my cancer diagnosis I ran many miles with my dog on a hot, spring day through our neighborhood streets in Connecticut. I went to the gym at 5 a.m. before work each day. I hiked. I biked. I kayaked. I played volleyball. I ate a healthy diet. My only physical limitation was my inability to go underwater without holding my nose.

On May 8, 2009, at the age of 26, I found out that despite my healthy track record, I had cancer growing within me – a lot of cancer. Turns out that even athletic twentysomethings aren’t invincible against this undiscriminating disease. Lumps started appearing in my underarm, along my neck, and on my collarbone. Diagnosis took weeks of doctors grasping at the idea that it was an infection of some sort, trying myriad antibiotics to fix it. No one – most notably myself – considered cancer when looking at someone in my demographic. The lumps (which I later learned to be swollen lymph nodes) popped up more and more until one day I could not turn my head and landed in the ER. It was there that a CT Scan revealed I was full of lymphoma. The pictures of my insides lit up like a Christmas tree.

I was diagnosed with Stage 4B Hodgkin Lymphoma – a blood cancer of the immune system. We joke now that it was everywhere but my big toe: I was at the latest stage possible and needed to start treatment immediately. Even so, I was told in the beginning of this journey that I had “the good cancer.” There is no “good cancer.” I was told that the cure rates are very high and that I would be rid of it after six months of chemotherapy. Unfortunately, I fall into that small percentage of Hodgkin patients that did not get cured with front line treatment. This is why the research efforts of organizations like the American Cancer Society are so vitally important. Science has saved me.

I am now 29 years old and have been battling this aggressive strain of recurrent lymphoma for more than two years. In the span of this time, I have essentially been on nonstop treatment with all of the surgeries, scans, hospitalizations, and detrimental side effects that come with that. I have endured 24 different chemo drugs in 9 combinations. I’ve taken part in three clinical trials. I have had two failed autologous stem cell transplants using highly toxic chemotherapy that would be deadly if not for the stem cell rescue. I have been treated in Connecticut at Hartford Hospital and Yale. This past spring, my husband and I relocated to Texas for five weeks so that I could enroll on a trial of targeted therapy drugs that were still in very early development at MD Anderson Cancer Center: the only place in the country offering them. I’ve been through several drug trials at Sloan-Kettering here in New York that required slews of travel from our northern Connecticut home. Each therapy worked initially, but the cancer ultimately proved to be too resilient for any to provide a forever cure.

If it sounds like a lot it was – and still is. My body has been through hell and back several times over, but the key is that it keeps coming back. Its resiliency and ability to heal has astounded me, and I know exercise and a healthy lifestyle have played no small part in that.

I speak to you now at 50 days post-allogeneic stem cell transplant. This summer, due to the incredible work of the scientists, researchers, oncologists and medical professionals on my team, I finally reached a sufficient enough remission to go forward with the donor stem cell transplant that all agreed I needed to achieve lifelong remission. My younger sister turned out to be a perfect DNA match and on June 16, after tough lead-in chemo, I was given a second chance at life with the insertion of her donated stem cells into my bloodstream. Those cells are currently building a brand new immune system in my body that will hopefully forever keep the cancer at bay. The process required 27 days of hospital isolation. I was not allowed to leave the confinement of my hospital room walls.

On July 5, I was released and my incredible husband – and cancer co-pilot – Craig and I had the privilege of moving in here to Hope Lodge. The high risk and frequent doctor visits my allo transplant requires forces me to remain in NYC close to my Sloan-Kettering team for 100 days post-transplant. We have been away from the familiarities of our home for two months now: half spent in a hospital room and the other half here at what I’ve affectionately come to refer to as “the lodge.” It’ll be a while longer before we can go home.

Sure, we miss our house, our family and friends, and our yellow lab terribly, but Hope Lodge has provided more comfort and community than we ever could have imagined. On the day we moved in I was so weak that I could not even complete the tour of the place. When the volunteer got us to our room I sat on the king-size bed: a huge upgrade from the paper thin mattress at the hospital, and I broke down in tears in front of her when she told me that even the washing machines and dryers here were free.

I don’t know how we could ever financially manage living in Manhattan for the summer on top of the tremendous medical bills and the household expenses we need to maintain even though we are not there. Never mind the lack of job income. To have a place like Hope Lodge to alleviate that financial burden is no less than a miracle. It allows us to focus on more important things. The support services they offer here have been essential to both of our healing. I’ve napped on the outdoor couches. I’ve laughed along with the comedians brought in. I’ve relaxed and rebuilt with the yoga and energy healing sessions offered.

In the first week here I had a particularly rough evening. I was doubled over with stomach pains, palatable nausea, chills and a migraine. I was sobbing crying in pain and self-pity curled up on the bed. My husband dragged me to my feet, helped me into my sweatpants and down to the sixth floor to see the Cherub Improv troupe perform. The group’s visit had been announced on the weekly activity schedule slid under our door. Despite my reluctance to leave the bed, once I got to the performance, I laughed so hard that it physically hurt, in a good way. I was howling laughing and I could not believe that this perfect cure to my woes was brought right to me, and that I could enjoy it in my hangy sweatpants with a heat pack on my belly and one on my back and no one gave me a second look.

That’s been the most cherished aspect of living here: the respect, comfort, empathy, and support displayed by everyone. We’ve built intimate friendships with fellow patients and caregivers that can relate to what we’re going through in a way that no one else can. There are currently several others here who have gone through donor transplants at the same hospital on the same floor with me. It helps so much to know that I’m not alone on this journey. We’re able to whine with, celebrate with and encourage each other as we heal.

This building is where I literally learned to walk again and laugh again and where I began this promising, though tumultuous, path to healing. We’ll forever cherish the safety and community that Hope Lodge has brought us and are tremendously grateful that a place like this exists. We realize that without devoted supporters like you, it would not be here. It is so comforting to know that because of your efforts, future patients will be able to find home when they have no choice but to be far away from their own.

So thank you for challenging and pushing yourselves so that our lives can be a little bit easier. I know that if it weren’t for continuing to be active throughout my treatment that I would not be here talking to you today. Learning about DetermiNation and your accomplishments solidifies that fact. Even on my most difficult days, inspired by all the patients here healing along with me, I have made it a point to get up and do something active. These days, it might be just getting from my bed on the 12^th floor to those chairs out on the patio – on others, it’s walking a mile. I still have a lot of healing to do, but I am fortunate to have glimpses of a strong body again and I know that I will get there. To be cliché: treatment recovery is a marathon, not a sprint.

I don’t share my story to make you live in fear of disease, but rather to inspire you to continue on your paths of wellness. You only get one body and it is moving to see people who are nurturing it and exercising it in the way it should be treated. Inevitably, we’ll all hit bumps in our road, we’ll all have some kind of bout with illness, but the adventure is made much easier when you’ve given your body the tools it needs to get through unimaginable physical, emotional, and mental challenges. Not only are you keeping yourselves fit, but you are doing it in honor of those of us who have lost our health and giving us hope to endure. Because of the contributions you’ve made, we will find health again.