Grandmother and granddaughter with birthday cake

The Power in Just 'Being'

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I remember that day like it was yesterday. The last day I ever saw my grandmother.

I stood at the sliding, wooden door that separated her kitchen from the stairs that led to the side door of the house. My grandmother sat, frail, skinny, hunched over in her chair in the kitchen. She looked so sad. She looked lonely.

I was afraid.

I was 15 at the time. It was the beginning of the year, early February and the VHS tapes (yes, VHS tapes) had just been released of my Christmas dance recital. It was a cold, snowy day in Michigan. My mom and I were at my grandmother’s house to help clean up, sort bills and take care of her. I remember it like it was yesterday.

My grandmother was sick but not a normal everyday cold kind of sick. This was different. This wasn’t the woman I had always known. For my entire life, my grandmother was nothing short of a superhero. She was a sweet and gentle as Mother Teresa, as wise as Solomon and as fierce as a lion. She was Grandmother. She was my world.

When she was diagnosed with breast cancer, she didn’t want me or any of her other grandchildren to know. She wanted to be strong. She wanted to beat it. After she beat the breast cancer, colon cancer came next. I never knew my grandmother had cancer until after she passed away. I suppose she wanted it that way because I would’ve had a hard time letting go of her. I would have wanted to save her.

I remember the last time I saw her so well because of what happened that day. As my mom was helping feed and take my grandmother to the bathroom, I sat in the living room watching TV. My grandmother called to me and asked if I was ready to watch my Christmas dance recital video. We had talked about it for months now, and they had finally handed out the videos at school. I was so excited for her to see it since she had missed my recital.

Yet, when the time came for us to watch the video together, of me in all my ballet and modern dance glory, I said no. I don’t know why exactly, if it was the teenage angst in me not wanting to do what I was told. Perhaps, I was just too restless from being in my grandmother’s house all day cleaning. I was ready to go. I left the tape, and I think I told my grandmother we could watch it later.

The last time I saw her was when I slid that wooden door to her kitchen and walked out into the cold, Michigan air. I regret that moment so much. How I wish I could go back and just be. I’d go back and watch that silly dance recital video with my grandmother. I wouldn’t have been in such a hurry to go. I would’ve sat next to my grandmother, rested my head on her lap and laughed at the silly costumes we had to wear. I would’ve told her the parts of the choreography I struggled with. I would’ve pointed out the parts where I messed up, but no one could tell.

I would’ve stayed with her. I would’ve held her hand. I would’ve told her how much I loved her. I have would just been.

I got another lesson on “just being” that same year when my closest friend came into the girls’ locker room to find me. I was changing for dance class, and she came in the room trying her best to hold back tears. She told me her cancer had come back. She was afraid, and she came to tell me. Out of all her friends, she came and found me.

I don’t know what level of profundity a 15-year-old girl is expected to have, but again, I didn’t know what to do. It reminded me of my grandmother, when she was sick and frail. I was afraid. So I just hugged my friend. We stood there, her crying and me holding her in the girls’ locker room.

We stood. We cried. We embraced. Her mom stood watching us, and she let us just be. I wouldn’t change that moment for the world. Two years later, in our senior year of high school, my friend passed away. I still hold that memory of us in the locker room tight.

We don’t always have the most eloquent or beautiful words. We don’t have the right words or answers, no matter how much we want to. Sometimes, it is just a matter of being. Just being there through the hurt, the scary diagnoses and the uncertainty. There is so much power, so much unknown healing, in just sitting with someone in all of life’s hurt and confusion and just being.

Image via Thinkstock.

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The Mixed Emotions I Had When My Breast Cancer Diagnosis Came After My Mom’s

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My mom was a beautiful soul. She had vibrant green eyes and a warm, caring nature. She was also tough as nails. She raised us with a good moral code, with a particular focus on conservation. “Waste not” was important to her — we never ran the dishwasher until every nick and cranny was filled in an organized fashion, and though recycling came after we were gone from the house, we had the most organized trash. Nothing went into it until it was compressed by hand to the smallest size.

She became my best friend as I became a young adult. While we had our conflicts, I always looked forward to our daily chats on the phone. When I was 10 and my brother was 8, she divorced my father and returned to college to get her bachelor’s and eventually her master’s degree in social work. At the age of 40, she went on a trip that really influenced her final full decade of life. During that trip, she recalled her childhood dream of walking the entire Appalachian Trail, from start to finish, and spent nine years meticulously researching and planning for the journey. At 43, she was diagnosed with breast cancer, the same age her older sister had been diagnosed. She went through treatment and healed her body. Six months before turning 50, she began the Appalachian Trail in Georgia. Ten days before her birthday, she finished the trail, the final assent up Mount Katahdin, in the company of her siblings, my husband and myself. It was a beautiful day filled with joy and celebration.

Six weeks after she finished the trail, my mom called me to talk. At the time I was living in Boston and she was in Maine. She shared the most unexpected news. Her cancer returned, and it was everywhere — her bones, liver and lungs. This amazing person, who had just walked 1,200 miles with her “home” on her back, had actually developed full-blown metastasis on the trail. She said, “Well, everyone was talking about how they were in pain, so I just assumed that mine was no different.” It was the first time in her life that she did not have any specific goals in mind, beyond wanting to beat cancer again. I recall this conversation with her as we lay next to one another, disbelieving that this could be the end of her “story.” It was early on in the treatment phase, and while we hoped for the best, a part of me knew somehow this was the beginning of the end.

My brother, my husband and I came home shortly after her diagnosis to help care for her, along with our family and her numerous friends. She was gone less than a year later, dying five days after she turned 51 and just two weeks after the first anniversary of finishing the Appalachian Trail. Over 300 people came to her wake — her family, friends, families from “the old neighborhood” and the extended community. It took several years to really process the loss of my mom, to adjust to the fact that I could no longer pick up the phone and talk to her. I was 26 years old when she died.

I continued on with my life, training to be an art therapist, giving birth and raising my two sons, and so forth. Yet in the back of my mind, I always pondered whether or not I would get cancer. I didn’t feel tormented with anxiety about it for the most part, but naturally, I couldn’t help but wonder. I watched my older female cousins reach and surpass the age of 43 without getting diagnosed, which gave me hope that this would be the same for me.

Then, in the summer after I turned 40, I had a dream that I had breast cancer. The next morning, I did a self-exam and found a lump. At the time, I had a high deductible insurance plan I knew would change in the fall, so I scheduled an appointment for the future and quit coffee to see whether or not the lump was possibly a caffeine cyst. Unfortunately, it grew in the weeks that followed, becoming visible to the eye when I looked in the mirror. The day my youngest son started kindergarten, I went to the doctor, who ordered a mammogram for the following day. The mammogram turned into a ultrasound, which turned into a biopsy. While I was shell-shocked, I was deeply appreciative that we were not “wasting time” figuring it out. My mom would have approved.

September 9, 2014, my breast surgeon left me a voicemail saying I could call her on her cell, no matter what time it was, so she could give me the results of the biopsy. I had triple negative breast cancer. The sample had been saturated with cancer.

It was scary. I was in a state of disbelief. I was angry. I had hoped to be able to really focus on my career now that my kids were both in elementary school. Yet there were other plans in store for me. The cancer had spread and they found a potential issue in my hip, but ultimately decided it had not metastasized. And while I was experiencing all of these mixed emotions, I was deeply surprised because I was also feeling a deep sense of peace. The question of whether or not I would get cancer, the one I had asked since the age of 19 (my mom’s first diagnosis), had finally been answered. Feeling peaceful was completely unexpected, but I was grateful for it, because it helped me maintain some sense of being grounded — which fueled my resiliency to take on this challenge.

It can be difficult to accept the range of our thoughts and feelings when we are confronted with a life-altering experience. We often feel like we “should” have certain reactions to life’s complications, and thus unanticipated responses can throw us for a loop. Yet, in order to heal, I believe it is important to create space inside for them all to coexist. For a tapestry is always made more beautiful by the diversity of its interwoven colors and patterns.

You may be struggling with accepting the many emotions a diagnosis can bring, not to mention the challenge of experiencing your loved ones’ reactions to the news. It’s fairly common that cancer patients feel like they need to be strong out of fear of burdening their family with their feelings. Yet if we remain quiet, we miss important opportunities to feel emotionally connected, which is central for keeping yourself afloat.

Imagine we were sitting together, discussing how to manage the chaos of the diagnosing phase. My advice to you would be to become an observer of your thoughts and feelings, to welcome them rather than critique them. There is no right or wrong way to handle the words, “You have cancer.” The more accepting we can be of ourselves and our feelings, the more resilient we can be in addressing them.

As Jon Kabat Zinn wisely reminds us, “You can’t stop the waves, but you can learn to surf.”

Follow this journey on Creative Transformations.

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Breastfeeding and Body Acceptance After My Mastectomy

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As I hold the newest addition to my family, I am bursting with love and contentment. I know I can do at least one thing right — I can make some pretty amazing children! I have a healthy, handsome baby boy. I won’t make it seem like it has been easy since having my fifth child. It has been trying, but every second is worth it. I may lose my “cool” the same as the next mother, but it doesn’t mean I love them any less. It just means I’m human, a not-so-perfect human.

I have had two years to accept my body. I’m not saying I’m bursting with joy with my new image, but it surely wins against the alternative of dying. There are people who wonder what it looks like to have a mastectomy, and there are people who think it’s disgusting and never want to see it. I remember having a discussion with someone and they said something along the lines of, “That’s gross, I would never want to see it.” I thought to myself, well, that’s OK, they can’t help the way they feel. Then I thought about it for a while, and I said, “I am deeply offended. This is my body we are talking about, and if you think my mastectomy is gross, then you are saying I am gross, and that hurts my feelings deeply!” I think in that moment of defending myself, I realized I have nothing to be ashamed of.

I had cancer. My breast tried to kill me, now my other breast is feeding and aiding in the life of another human being. I have a love/hate relationship with my breasts. I hate that they tried to kill me, but I love that I am able to feed my baby. My children don’t care that I only have one breast, they don’t care about the way I look, and they don’t care that my chest has scars. But what they do care about is the fact that I am alive, the fact that I am able to provide food for them, and the fact that they are deeply loved by so many.

I have formula feed and I have breastfeed; there is something good to be said about both. I feel a strong connection with my newest little one while breastfeeding. I may have felt unwanted before, but now I am needed more than ever, and that brings me great comfort.

There are people who are unaware that someone who had breast cancer and a single mastectomy is able to breastfeed. Life is a miraculous thing. We are capable of so much as humans, if we put our minds to it. I am not an outcast because I had cancer. I am still a fully functional human with many possibilities, and I plan to push myself each and every day until I cannot push any longer.

So when you are looking at someone who looks different, think twice before you say anything out loud. Think about the struggles that person may have faced and is probably still facing. Try thinking about the positive outcomes instead of focusing on the negative outcomes. We all have feelings, and some are more sensitive than others. We should just share the love. Share the love, people.

Follow this journey on Myunexpectedjourney2016.

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Why Breast Cancer Awareness Month Is for Everyone

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October is one of my favorite seasons. I think of leaves changing, Halloween, pumpkins, and I also think of awareness. In October of this year, we celebrated World Ostomy DayMental Health Awareness Week , Domestic Violence Awareness Month, and Breast Cancer Awareness Month. It is a month to love ourselves and our bodies — a month of awareness I think we need to honor every day, all year long.

dancing girl

It is a month to show our support in whatever way we can – whether it’s sporting a pink ribbon, participating in a run, or learning more about the issue. This mixed media painting above, “Dancing Girl,” was a piece I created in Yale Hospital and is now in a brand new Breast Cancer Outpatient Center. I couldn’t be prouder to be displaying it in a brand new beautiful center in Connecticut.

Making art, going to a medical checkup, reaching out to a friend – there are many ways we can spread the word about the importance of women’s health to raise more awareness around breast cancer. There are many common misconceptions about breast cancer, and to know it exists isn’t enough. That’s not the kind of awareness this month is about. Awareness starts from within – from the intimidating, yet extremely empowering fact that we have the ability to keep our amazing vessels as healthy as we can. That’s a wise and daily approach to healthcare.

breast cancer fact sheet As women, an important stance we can take to breast cancer is prevention, and the best stance anyone can take to any kind of physical illness is good self-care. It’s an effort I try to make daily –  I’ve been through enough already! So the least I can do is take an empowered approach to my health for the one body I have. After 27 surgeries, my digestive system was surgically reconstructed with the intestines I had left, and now I want to make sure I fill that system with the best nourishment possible, and do everything I can to take care of myself – inside and out. No matter what we’re going through, we need to love, nourish and care our bodies. What else can I do? I try to exercise, eat healthy foods, and see my OB-GYN regularly.

Here are some ideas to keep your mind and body healthy:

My biggest healing and recovery resource has been sharing my story. If you’re going through something… talk about it. Sharing our story makes it more palpable for ourselves. By just speaking it, writing it, dancing it – we reframe what has happened to us in a way that we can easily process. And the mind and body are definitely related – so take care of all of you. We can cope with any detour in life if we travel it together. You are not alone, and just having someone be able to nod their heads in empathy makes things that much easier. I think awareness months are also about knowing we’re not alone. Life can be a bit hard, and it takes a bit more work at times, but there is some kind of power in numbers here. Knowing we all struggle, we all get frustrated, we all feel messy, sick, angry, sad, or just don’t want to deal – when we know others go through this too, we actually feel human. So this month – and every month — let’s spread awareness in our world. But let’s not forget the best kind of awareness – our own. Take care of you. Together, we’re stronger. Creativity is healing. So get creative, get mindful, get self-compassionate – and let your body do the rest.

Amy  is a  PTSD peer-peer specialist, artist, author, speaker for RAINN and TEDx, award-winning health advocate, actress and playwright. Endorse Amy’s nomination by WEGO Health for a Health Activist Hero Award until October 21st at amyoes.com/health-activist.  Amy is currently touring with her one-woman musical, Gutless & Grateful to theaters, schools, healthcare communities and more.  For information on keynote presentations, workshops and signature talkbacks, (and specialized versions for corporations, college campuses, survivorshealthcare professionals, and artists) visit amyoes.com.  Amy also offers private coaching to help others navigate their own beautiful detours, and subscribe for free excerpts of her upcoming book, My Beautiful Detour, and download a free creativity e-book.

The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here.

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'Live in the Moment': Lessons From a Young Breast Cancer Survivor

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I ran my fingertips through pale pink sand and gazed at a glistening blue-green ocean ahead of me. I was laying on a lounge chair, enjoying a peaceful break from my busy life during a beach-side vacation. I yearned to immerse my entire body in the warm water but thought twice about going into the ocean. A large sign with a picture of a jellyfish had caught my eye earlier that day as my husband and I walked onto the beach.

Remembering this sign, I was now trying to decide if I should go into the ocean. Ordinarily, this would be a no-brainer. There were lots of other tourists basking in the sea, taking in the sound of the waves hitting the shore and the glorious color of the water, fully enjoying the moment. 

The moment. I recently learned to appreciate precious, fleeting time. I didn’t always follow the mantra to “live in the moment.” But surviving breast cancer at age 33, less than a year after becoming a mom, taught me the importance of it, among other lessons.

Between the time I went for my initial mammography exam until the time my tumor-status was determined post-operation, my life was in question. There was a good chance the cancer in my breast had escaped to nearby lymph nodes. But it didn’t. For that, I live in the moment. There was a good chance that if it was invasive, I would have needed chemotherapy. But I didn’t. For that, I live in the moment. There was a good chance that because I would need chemotherapy, I would struggle to fulfill my dream of completing my family. But I didn’t. And for that, I live in the moment.



Surgery to remove a good portion of my right breast followed by six weeks of radiation that left me exhausted was not a walk in the park. It was a struggle when I couldn’t lift my baby for a few weeks after surgery. It was an emotionally and physically trying time for me because I was working while undergoing radiation and taking care of my family. My life was on the line, but I still had to be a mom and an employee. A positive attitude kept me afloat. I was able to power through this rough patch in my life knowing everything would be OK.

Now I realize breast cancer could have killed me. After I finished treatment, I began to reflect and developed a new outlook on life. Facing cancer head-on has made me see that life can snap away in a moment and has opened my eyes to these life lessons.

Everyday moments of bliss, whether they are with family, friends or alone, are incredibly valuable and not to be missed. Bliss is spending time with my 2-year-old daughter. We watch “Dora the Explorer” in bed on weekend mornings, splash around in the pool and whip up batches of muffins together.

Life is short, so do what fulfills you. Since I was a child, I have enjoyed writing. It’s even been part of my career, although it’s been corporate-focused. After surgery, I began to pour my thoughts onto paper and realized writing about personal experiences really fulfills me.

Be positive.
 I try not to let the little things drag me down. I turn negative situations into positive ones and try to be flexible. When my job was eliminated shortly after I finished treatment, when all of my energy had been sapped out of my body, I felt defeated. I took time to sulk and then moved on, knowing a better opportunity was on the other side of the rainbow.

Time has seemed to speed up since I was diagnosed with breast cancer. I now realize the precious nature of every moment, so I am anxious to hold onto as much time as possible and make the most of it.

Cancer returning to invade my body is always on the horizon of my mind. I grapple with thoughts of being diagnosed with breast cancer again and being ripped away from my daughter, my husband and my family and friends. I vigilantly check myself every month and routinely go to see my doctors, but I try to not let this ever-present worry get in my way of living my life. 


On that note, since living life trumps worry, I waded into that glorious green-blue sea and basked in it. I was even stung by some sea creature on my foot, but it was minor, and I didn’t let it stop me from enjoying my time in my happy place. Before I knew it, I was back in my everyday routine. Each day is not to be missed.

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10 Lessons I Learned Early On in My Journey With Breast Cancer

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Breast cancer. Who – me? Stage 2 invasive ductal carcinoma. That certainly wasn’t in my life plan! I was diagnosed in January 2016, and these are some of the valuable lessons I learned early on in my journey. 

1. There is a difference between a crisis and an emergency. 

It was an emotional crisis to hear my diagnosis, but I learned it was not an emergency. In the midst of the initial shock, tears and sleepless nights, there was time for me to come up for air. A good friend recommended “Dr. Susan Love’s Breast Book,” and I devoured it. It was a great crash course in breast cancer. It took me three weeks to finalize a treatment plan, during which I had further testing, visited the surgeon and oncologist, and sought a second oncologist’s opinion. 

2. Trust my gut.

My brother gave me some wise advice the first week I was diagnosed. He said, “Sis, sooner or later you’ll be faced with decisions only you can make. You need to trust your gut.”

My oncologist recommended four months of chemotherapy to shrink the tumor before surgery. He also mentioned that I qualified for a clinical trial that would use a pill to cut off the estrogen supply. It involved a second breast biopsy besides my initial one, and a third biopsy after the first month of treatment, so he didn’t think many women would want to participate. Mark and I were at the check-out desk scheduling the appointment for my chemo port placement when I asked him to go back and see if they would give us the clinical trial papers so I could look them over. I spent the weekend stewing over chemotherapy side effects versus the possible risks of the clinical trial. Early Monday morning I read through the clinical trial again and my gut clearly told me, “It’s the right thing to do.” My cancer is 100 percent estrogen receptor positive and slow growing. Since chemotherapy works to destroy cells with rapid growth, my gut told me that cutting off the estrogen supply trumped chemo. It was a relief to cancel the port placement appointment.

3. There is no turning back.

That is the thing about cancer. You have to make treatment decisions, and you will never know the outcome of the options you didn’t choose. Even if you change course midstream, you can’t necessarily go back and start over. I remember crying for two days before I started my pills. I wanted to stay “normal” for a while longer. Then I realized that normal had already changed, and what I really wanted was to be post-treatment. There was no way to get to post-treatment unless I let go of being pre-treatment.

4. Get organized.

I was quickly accumulating pamphlets and reports from my office visits and tests. I knew it was time to get organized. We bought four nesting bins: medical records, billing information, cards and letters, and miscellaneous handouts. I take a small notebook to every appointment with a list of questions and write down the answers on the spot. I also keep a record of the date of every office visit and procedure. I vowed that cancer was not going to take over our kitchen table. Instead, I have it neatly stacked in the corner.

5. Be willing to accept help from unexpected places, and don’t expect help from expected places.

Mark and I have repeated this advice to each other more than any other we have received so far. It came from a physician friend two days after my diagnosis. I am a private person, but we soon realized that people can’t reach out if they don’t know anything is wrong. To balance that, I also learned it is OK to only share when you are ready. If people ask questions that are too personal, I feel empowered to say I’m not ready to talk about it.

6. Build a support team and a medical team.

Some people are eager to offer unsolicited advice and talk about their experiences with cancer. I appreciate their good intentions, but I did not want to make decisions based on anecdotal information. A good friend suggested, “Build your support team and build your medical team. Use your support team for support and your medical team for your treatment decisions. It is OK to keep them separate if you want to.”

7. A positive outlook makes a difference for me.

I used to hate the saying:  Life is 10 percent how you make it and 90 percent how you take it. It made me feel like all my hard work only added up to a 10 percent difference. Now I realize that even if I can’t control a situation, I can control my outlook, and a positive outlook makes the biggest difference of all for me. I have made a conscious choice to focus on the positive. I have erased negative texts instead of sending them. I have chosen not to complain when things go wrong. The biopsy I had one month into the clinical trial had to be repeated the following week due to a processing error. Instead of focusing on the negative, I asked if they would take some extra time with the ultrasound to measure the size of my tumor. They agreed, and I had the relief of finding out it was already shrinking. We waited two hours for an appointment last week and spent the time Googling cartoons about long waits in doctor’s offices! Picture this: The patient is sitting on the exam table and his right leg is sticking straight up in the air.  The doctor stands beside him with stars floating around his head like he has just been kicked.  The nurse says, “Looks like appropriate reflexes for someone who’s waited two hours!” We were chuckling when the doctor walked into the room! When I am feeling especially discouraged, I always look for a way to reframe the situation in a positive light.

8. Cancer isn’t a competition.

I have been blessed to connect with two friends who are going through breast cancer treatment ahead of me. When we first met and shared our stories, I tried rank ordering who had the “best” and “worst” diagnosis and treatment plan. That is something I conjured up on my own, and it was not helpful at all. I still have three more months of taking pills to cut off the estrogen supply before I know whether I will have a lumpectomy or mastectomy, and I will only learn if I need chemotherapy after the surgical pathology report is back. This could end up really good or really bad. That does not negate the stress I’m going through during this waiting period imposed by the treatment plan I chose. I have lost a lot of sleep over the “what-ifs,” but I’ve also made good use of this time to consult with the radiation oncologist, plastic surgeon and mastectomy fitter so I will be prepared to make decisions when the time comes. I have a newfound respect for all women with breast cancer, regardless of the details. 

Everyone has to find the path that is right for them. Writing poetry, e-mailing friends and writing in my prayer journal helped me process some of my emotions.

9. Stay engaged.

Mark found a friend whose wife is also going through cancer treatment. They have started meeting for lunch regularly. The most helpful advice Mark got from his friend was, “Stay engaged.” Mark sat down with me one evening and said he wanted to stay engaged but didn’t know what he wanted to talk about or if he even had anything to say. An hour later, we were still talking.

10. My faith is a source of strength during this process.

My first husband died when I was 37, and I learned I could rely on God in hard times. Even when I was mad at Him and someone else had to stand in the gap for me, I believe God was always there. I had plenty of time to re-evaluate my priorities and started living a more authentic life. Facing my cancer diagnosis almost two decades later, I was feeling pretty good about how I was living my life without regrets. I felt I was reaping the rewards of what I had been through in my 30s. That was – until I had lunch with Nancy! She is in her 90s and her husband was moving to a nursing home because of his poor health. Mark and I took her out for lunch to lift her spirits, and she ended up lifting ours. I told her I knew they were going through a hard transition, and it would be nice to know how long the roller coaster ride would last so she would know how to pace herself. Nancy replied, “Oh, honey, then how would my faith have a chance to grow?” That stopped me in my tracks.

Lunch with Nancy gave me the resolve to stop coasting on past experiences and open myself up to the new lessons cancer has for me to learn. I joke that my life goal is to take up smoking on my 100th birthday and light my first cigarette from the candles on my cake. That leaves me 44 more years to coast or grow. 

You can’t gain speed coasting unless you are going downhill. I choose growth. I choose faith. I choose life.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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