Michelle Courtney Berry’s Summary Remarks

We gather today for the Cancer Moonshot National event, sponsored by VP Joe Biden and with regional summits happening all over the country, and ours here in Ithaca, sponsored by the Cancer Resource Center of the Finger Lakes – we gather in our shared desire to put a local face on cancer and in addition to shooting for the stars and moon, we look at small ways that make a big difference in the lives of those people and families facing cancer or supporting other beloveds in that effort.

We are united today in the power of our stories – our vulnerability, our concern, our longing for a cure, our unity in knowing that the truth can indeed set us free…in knowing that is the power of story that makes the bridge, paves the way, heals a community in need of healing.

We have learned that all our cancer stories are unique, that each story is different, it has a different texture, a different backdrop – even the same type of cancer in one person is not the same cancer in another – even if it is called by the same name – and each story is unique to your socioeconomic status, class, and age and generational differences and backgrounds and ages and skin…all bodies react differently and blanket advice about how to feel, what to eat, think and do – is rarely what you truly need.  You may know clearly what you need or need time in figuring that out.

We understood more clearly today – that the cancer story is a journey unique to each individual and that they must work hard often against a tidal wave of fear, or different information from varying experts, that they must be vigilant advocates that they must endure often the most difficult of procedures and systems that they might not know that NYS may often reject the first disability claim as a matter of course, triggering a desire to ensure that we have the minds, ears and hearts of officials at the local, state and federal levels who we implore to understand and respect the empower the rights of individuals in their desires to be seen as individuals as whole persons, holistically and individually.

We heard that the struggle may be just in getting admitted after being refused treatment, though your instinct knew differently – that you may require the unthinkable, multiple surgeries and multiple treatments, some painful and alienating and overwhelming – and even more so – that the diagnosis of one cancer is not a protection against other cancers, that you may have more cancer, and more treatments and weekly visits and feel lost and alone – and you might sit outside the door of the Cancer Resource Center – based on a friend’s referral but you might be afraid to turn the knob and come inside – that you might not know how to ask for help or seek help, that you may not even know all of the help that is there for you…

There may be too many medications and treatments and confusion and fear and exhaustion and you may be unable to work – and you may need advocacy in knowing your rights – and you may need a free ride to treatments or for even deciphering the language of cancer – a language you do not want to learn, a club you do not wish to have a membership in – but there you are – in this club and you may feel down, alone, afraid, overwhelmed by bills and procedures and trips and endless accounting, you may need a CPA you may need a lawyer, a free ride to Sloan-Kettering or to Weill or to another opinion past your second opinion – and you may need more caregivers and then you may need relief from caregivers and your caregivers may also need caregivers too!

You may rely on a support group that understands your exhaustion, your rage – either vented or held in – or private and personal – and a place of people your age – you may be diagnosed at an age that the cancer wasn’t “supposed” to be- you may be “one in a million” – your cancer may be rare, you may suffer, you may not sleep, you may not be able to work – but you have three kids and you may need to have someone provide a car or rides or a business that knows that not all cancer patients are adults they are kids – and that our kids have cancer too – and that you may need more fundraisers to deal with not being able to work – you may not know what to do when the sick bank runs out – then what?   What if your co-workers donate their sick time and it’s still not enough?

You may lose your body – that you knew – your hair – you may need wigs or not want wigs. You may not know that there are over 200 types of cancer…you may not feel grounded but then you may find support in a group at CRC…you may come right away, or take years to get here, but we are here.

You may have symptoms you ignored – or no symptoms at all.

One day you will wake to feel the worst you ever have felt – and other days you will wake feeling fine and still, the diagnosis can change your life.  You may not feel you can talk about a “bottom-end” cancer the way others talk about their “top end” cancers, and you may not like the silence or approve of it. You know that the speaking out of wherever your cancer is should bear no shame, no blame…and then you will learn Cornell President Elizabeth Garrett, a young woman who died of colorectal cancer and it will give you pause or earnestness in your knowing that the more we talk about what we aren’t “supposed” to talk about – the more we can eliminate stigma in society, the better the journey for all. You should be able to talk about your cancer, no matter its location.

You could have eaten Twinkies or only organic and you may still have the EPIDEMIC that is cancer. You may be very fit and still hit with cancer. It seems not to matter by age, by size, by degree or class or whatever you felt was “safety” – before – you may have to travel many miles, you may be cancer free then hit with cancer after many years, you may have lost your parents, you might blame some doctors who did not move quickly enough for your parents or even you, you may have other great doctors and medical teams – but you might feel isolated as each team is not all aligned or that you may not have a radiologist who talks to the urologist or the primary care physician.

You may long for alignment, holistic treatment, unity in a community that feels fractured.  You may have a great team of nurses and supporters and staff at CRC sitting at appointments with you, holding your hand when you need it, sitting quietly or chatting or just being still.

Your cancer might have the “I’s” you are not allowed to talk about – impotence, incontinence – you may have too many opinions of how to treat or not treat your cancer. There may be too many medications, too many pieces of advice, you feel the “powers that be” know far more about cancer prevention but do not share it based on the money created in the system by cancer. You may want to speak out but fall tired or even mute at the thought of even speaking may tire you out, unbelievably so…

You may feel overwhelmed and you may have to advocate for yourself again and again and again, by listening to only your gut, telling you that something is not right or some procedure is needed or not needed, you may feel defeated, deflated, elated, wounded, exhausted, frustrated and at a loss. You may not know others are here for you, waiting for you, offering either yoga or acupuncture or meditation or small groups based on your unique set of needs by gender, age, type of cancer…

You may want new treatments but you can’t afford them or your body can’t withstand them. You may long to align your mind, body and spirit, but not know how. You may think, “why me?”

You know it takes a Village, a community connection… and you may crave community but not know of all that is available to you through CRC…you may have a wonderful medical team – you make need to find a new team.  Your mind, body and spirit may grow weary, even with your best intentions. You may be told to be positive, but that may not be what you need to hear and it may feel a violation – or you may be told to eat and drink certain things by well-meaning others what may or may not help you with your cancer or impact your cancer or it might help but what you want most is to be listened to or just sat with or just allowed “to be.”

You may have to push back fear, share your story, you may feel some cancers are indeed man-made that carcinogens in the air, water and food are also to blame and you may yearn for better treatments and outcomes.

Some of you have defied predictions and lived longer than what was said about your own timeline. You may feel engaged in a fight. Others have died – those once beside you in our shared struggles.  It does not mean they lost a fight, they just died.  We will all die. Some of us from cancer, others from something else.  What you are revealing and sharing is the joy of living and looking to each day as a better day – you share your stories because others learn from them and that there is power in shared stories of hope, healing and understanding how unique each diagnosis is.

Fueling this hope is research – in ways that basic approaches to the more advanced – in nanotechnology and in community engagement – in studying cancer in humans – and animals and in creating partnerships to further understand the patient perspective, we have a strong one in Cornell University and its partnership with CRC – and how a high school biology teacher, living with cancer and treatment of her cancer, is now in a lab with those at Cornell, actually hopeful that cancer isolated in a lab will grow so she can learn more paths to treatment – how the biology of all cells – even cancer cells have their own significant role in our ever-unfolding story…

What can you do?  You can do a lot. You can help with your time, your donations of time and money. Are you a lawyer or CPA who can ensure that someone still has their money in order – their taxes done? Someone living with cancer needs the small lifelines too – the occasional gas card and grocery card from CRC to ease the burden.  Can you help someone appeal insurance decisions that do not go in the favor of the person diagnosed? Each chemo treatment may be over 20,000 dollars – what, if you are fortunate to have insurance – what is the copay on that amount – and further, what if you have no insurance? What if you are unable to work? What if you are faced with chronic fatigue?  What if you can no longer support your family, then what?

“No one should face cancer alone” -that is the message from CRC – and another is how can You add your own ‘piece’ to the stockpile of goodness – the ways you can help a friend in need – cut the lawn, garden, pick up packages/mail, walk their dog – all without being asked?

People living with cancers and their families – need support – emotionally, physically, socially, societally, medically and they need their rights honored – at work at home – they may suddenly need disability and they may have been athletes and runners, too weak to run – they may develop “chemo brain” and feel foggy and disoriented – they may need more resources, like legal aid in Syracuse or at Cornell – or rides to local hospitals or ones in Syracuse, Rochester or New York City…

Cancer can show itself or hide. It can be found based on feeling the sickest you’ve ever been in your life – or it may be found during a routine exam. You may have a doctor admit you to treatment right away or you may have to put yourself in the hospital and demand answers.

Your diagnosis may come as a terrible fright or a great relief that “now you know” and now you can act.  You may wish for more information – knowing that information is power.  You may wake with feeling discouraged and other times, blessed and lucky because you have the gift of gratitude, no matter what you might say, “tomorrow will be a better day.”

You may have heard that even your cancer or your beloved’s cancer, “though a great interruption is an invitation to something” – maybe it is that you will be in service to others and other families living with cancer – maybe it is because you will have a greater calling in the care, advocacy, dignity, quality of support and treatment options that you wished you had or did have and you want others to have.

You may hear the rallying cry that we need more information – on early detection, screening, supporting, prevention and you may wish to be part of the grassroots efforts – that are springing up in your own community and those around the spheres of influence that you travel in –

No matter what our story, we are united in that we all have a cancer story – and typically a loved one who has died from cancer or battling cancer.

“A little can go a long way” – so giving what you can – in small ways or big checks can make a huge difference in agencies like CRC.

No matter what our story, we know this – that we understand it is the power of community, in sharing, in being heard that inspires our gratitude and the greatest gift we can give to one another is the power of LOVE.

 

Closing Remarks – Cancer Moonshot – Ithaca – June 29, 2016

by Michelle Courtney Berry

Former Alderperson and Alternate Acting Mayor, City of Ithaca –

Former Delegate in NY-22nd Congressional District for President Barack Obama

Current Entrepreneur/Life Coach for Stress Reduction – Working with People and Families Living With Cancer