This Face of Hope is a story donor who faces her diagnosis (Renal Cell Carcinoma) with faith, positivity and humor. With a passion for stories and music, Suzi’s bright spirit inspires us all.
I was ready to put cancer away for Thanksgiving (which also happens to be my 42nd birthday). It’s just been a lot lately, but as I woke up this morning at our farm I realized first I needed to get out some feelings… and process the past couple weeks. It’s quiet… the boys are sleeping, Jay is hunting. So, it’s just you and me.
The MBC community lost two young, passionate advocates this week. (Actually, we lose 113 people each day… each and every day… according to statistics. These are just two of them.) Caitlin and Laura were constant voices in the conversation around living life to the fullest and demanding more money for MBC research. For all the annoying aspects of social media (said by a mom of a 13-year-old) it is a powerful tool of connection for our community, especially young women facing MBC because you might not know someone in your own city. In my case the women I was close with in Louisville have died so I keep up with friends living with this disease online. Hundreds of them. Many I haven’t met in person. Caitlin was a friend to thousands with her candid storytelling and beautiful smile. She was 34 years old when she died.
Laura and I only met in person once, but it was significant. As many of you know (a little backstory) …
I received a box of scarves from Kelly when I was first diagnosed. I wore her scarves throughout my treatment. Both as a practical resource and inspirational gesture, these scarves carried special meaning for me. When I finished treatment, I asked for her address to send them back and she said “just find someone who can use them.” So, I took them to a YSC conference where I met Roberta. I gave her several of the scarves. I realized how much these scarves meant to me when I received them, but also how empowering it was to pass them on and share my story. (This was my inspiration to start Hope Scarves.) One of my favorite scarves was a brown scarf with rich merlot and gold flowers. Roberta wore these scarves and then passed them on to her friend Laura. In 2015 Laura brought this scarf back to Hope Scarves and added her story. You can watch our silly exchange in this short video. I was so giddy.
All three of us progressed to metastatic breast cancer. And, I tucked this scarf away feeling it was too special to send out without knowing if we’d get it back. I also thought, I’d like to have it when I needed it…
This past week Laura died. While we hadn’t seen each other for years we had a constant online conversation- commenting on each other’s activities, growing kiddos and travels. I will miss checking in with her. Her family was her life. I know how much they are hurting and pray for peace and acceptance.
Recently, Roberta got the news that she has to start toxic chemo treatments again after the cancer progressed on all the other options she tried. This is devastating because many MBC patients were on chemo as early stage patients and know how hard it is… however, the reality is now the duration is more uncertain. Having to attend her dear friend Laura’s funeral while carrying the burden of treatment changes is just too much. Roberta has three children – a son about Bennett’s age and adorable little twin girls. She has a witty humor and quick laugh. I know her heart is heavy this holiday season with all she is carrying.
All this as I carry my own uncertainty as to whether my October radiation treatments were enough to hold off my own cancer. My next scan is December 20th…
I had to turn all this heartbreak into action.
I knew it was time for our favorite scarf to head back out. I wrapped it up on Tuesday with four beautiful stories of the women who wore it- Kelly, Lara, Roberta & Laura. Now heading back to Roberta. I hope reading our encouragement and her own words will bring her strength.
But, that didn’t seem like enough. Many of you know, when I developed metastatic breast cancer we started a MBC Research Fund recognizing that scarves and stories are practical and inspiring but they weren’t going to save anyone’s life. It we truly wanted to live out our vision, Change the way people experience cancer, we had to invest in research. 100% of the money we raise for MBC research goes to research. 100%. In addition, our board designates an additional amount raised in our general fund to research. Our final amount for 2018 will be announced in December. We founded the MBC Collective with two other organizations and leveraged a 1:1 match so when donors give to Hope Scarves they know their research investment is matched dollar to dollar.
So, to truly honor Laura, Roberta and the shared story of our scarf, research had to be included in our actions.
Laura was an active supporter of Metavivor, another important nonprofit organization that raises money for MBC research. So, in honor of Laura, Roberta and our shared story – we made a challenge- each dollar raised in memory of Laura will be matched by Hope Scarves up to $25,000. So that together we can fund a $50,000 young investigator grant that scored excellent in Metavivor’s peer review process but fell outside their current funding capacity. I am excited to work together with Metavivor to make this $25,000 donation to honor Laura and our shared story.
We are the authors of our lives. We can’t change the fact that cancer invaded our bodies, or that it is killing our friends and tearing apart families. While the tears are still fresh, we can choose what we do next. We turn our heartbreak into action.
Seems there is a lot of heartbreak right now – in the horrifying wildfires, in victims of gun violence, hate crimes and addiction. Perhaps more than ever we need to stoke the power of love. Lend a hand, do your part to bring love to the world. As you gather with friends and family, give thanks and turn this gratitude into action. What can you give?
There is healing power in helping others.
Following this post – I received several inquires with how to donate to MBC research. Thank you! Click below:
I’m 30 years old, 7 months pregnant, I dress up for Halloween wearing an orange shirt with a pumpkin drawn on my big round belly. Our little two year old dinosaur trick or treats for the first time with his monkey and princess friends.
I am planning the McWane Science Center annual fundraiser, Beaker Bash. This year, in collaboration with our new dinosaur exhibit, the theme is “Bad to the Bone.” I connect with a local motorcycle gang who agrees to line the red carpet/valet drop off with their Harleys to welcome guests.
We are living in a rental house while we renovate our historic little 2 bedroom/1 bath into a two story, 5 bedroom/3 bath home for our growing family. I design our kitchen and pick out countertop.
I run the three mile loop on Wednesday night, a little winded at 7 months pregnant, but feeling great.
I go to my 7 month check up with Dr. Sharp. Running through my list of pregnancy questions, the last one being the pain in my left breast… a little bit of blood. The Dr. is immediately suspicious and sends me the same day for a biopsy. Slightly annoyed to miss my Target run, I agree.
Two days later I am sitting in a salon with Wills teetering on my pregnant lap as he gets his blond curls trimmed. My phone rings. I answer it.
The next I know I am looking into the mirror at a tear streaked face I barely recognize. Wills puts his pudgy baby hands to my face and asks, “mama, you have a boo-boo?”
That was 11 years ago. 11 years today.
What an amazing rollercoaster of love, laughter, adventure and sadness these 11 years have been. I’m grateful that there have been more smiles than tears. While cancer has taken a lot from me. My breasts, my hair, my ovaries, my invincibility… Cancer has given me an enhanced appreciation of the joy of being alive.
In 2014 – every cancer survivors worst fear… reoccurrence. Metastatic, stage iv breast cancer. I experience a deep, dark depression, anxiety, fear.
We came to understand that when the timeline is shortened – you savor moments even more. We doubled down on hope.
Today, as I think back to that young mom terrified with the news of a cancer diagnosis and everything she endured… I am proud of her.
I could never have imagined the chapters that would follow in my story. As I think back on the past eleven years I think the strongest theme is acceptance. Accepting the heartache, the disease, the loss of what I expected for our life. In each acceptance, a little light is sparked in the darkness. A tiny prick at first. But, then it grew stronger.
I read once that eternity is found in the moment of acceptance.
For a sentimental person, with a major case of FOMO (fear of missing out) this is everything.
It hasn’t been easy and I know there will be hard things to accept in the future. But, I’m grateful I have come to this place. I’m grateful for today.
Turning heartbreak into love. For 11 years and counting… My hopeful life.
With a goal to empower and connect, Carlene embraces the similarities and differences in each survivor story and reminds us all to live a great story.
Thank you for the outpouring of love and support as we faced our first MBC progression diagnosis. It’s been a crazy couple of weeks – hosting 500+ friends for Hope Scarves annual event, Colors of Courage (a huge success… more on that below), soccer tournaments, scans, doctor appointments, phone calls, more scans, escaping to Maine for a family adventure in Acadia National Park and now today… sitting at the airport in Washington DC on my way to a speaking engagement… finally at a point where I can reflect and write.
I was hesitant to share an update until we had a conclusive plan. Which we do now… here is a recap of the cancer rollercoaster of the past couple weeks and our plan:
- Original diagnosis was of MBC progression in my right hip and left femur.
- Additional scans ordered to measure the left femur and determine any structural issues that we needed to mindful of.
- An x-ray and consequential MRI revealed that the “spot” in my femur wasn’t cancer after all. woot- woot! GOOD NEWS!!!
- So, then we were “only” dealing with progression in my right hip – which is quite different because it is limited to just one spot. Similar to my original MBC diagnosis with one spot in my sacrum in 2014. This is known as oligometastases and opens up the idea of a local treatment option.
- Soooo, after three consultations we have decided to radiate the hip and stay on my current medication (Arimidex). Then, scan again in 3 months to see if there is more progression.
- If not – we will stay on my current medication as long as we can… until there is progression.
- I have a very high quality of life on my current medication and am thrilled to be able to hopefully get more time on it.
I have a radiation planning session on October 24th and will begin radiation on Halloween (spooky…). I will have three rounds, every other day. The hope is the radiation kills all the cancer cells that have become active and I can get my body back into a state of No Evidence of active Disease. (NED). If at my three month scan we find more active cancer than we will look at a systemic change of treatment.
I am at peace with this decision and deeply grateful.
This diagnosis awoke in me a fear that I had pushed deep into my soul for nearly 5 years. It also revealed a deep hope and steadfast commitment to living life over cancer that helped me not lose my laugh or my smile this time around.
I believe people and experiences come into our life for a reason. The week before my progression news I spent time with my friend Emily who was planning to be our featured storyteller for Hope Scarves’ annual event, Colors of Courage. Her experience facing leukemia had taken a very discouraging turn and she wasn’t well enough to join us for the event. So we recorded her message with a video crew. Being in her presence was an enlightening experience. She was facing devastating news, she had endured years of toxic treatments and months away from her family in inpatient care hundreds of miles away from home. All to find out the cancer was still growing and treatments weren’t working. Yet, here she sat – beaming hope and light. I mean literally, this beautiful woman radiates.
Together we talked about life, mortality, children and fashion. You can read more about our connection in The Voice article published in advance of our event.
So, when news of my progression hit and the weeks of fear followed – I channeled Emily and her light.
At Colors of Courage we honored Emily. Her story brought deeper meaning to the event and a greater purpose to our gathering. Following Emily’s lead we laughed, hugged and celebrated life. And, we passionately spoke about how hope shines brightest in the darkness. Hope isn’t reserved for those who “beat cancer” or are “cancer free.” Hope, love and light are there for all of us – no matter the circumstance… if we choose it. Each day you have a choice to live and love and embrace the day. Emily showed us this in her glitter hospital gowns and colorful headwraps. She can’t control what cancer is doing to her body but she can control the way she lives her life – and she gives and receives love more deeply than anyone I know… even as she enters Hospice care.
We shared her video, three of her friends spoke about what it meant to send her a Hope Scarf and what she means to them… and then we turned out the lights in the event space. In the pitch black darkness, we asked our guests to donate to RESEARCH… and when they did we asked them to turn on the light on their phone. We live streamed the program to Emily at home and together lit up the darkness in her honor – a hundred points of light shining in the darkness – representing over $70,000 in donations in under 10 minutes!
The event raised over $180,000 in total – our most successful event yet. But, success wasn’t just measured in dollars. It is measured in the support we showed Emily, in our shared stories of living life over cancer and creating light in the darkness.
I will carry this light with me always. And, I am certain I would have experienced this progression differently had Emily not been part of my life.
I spent time with Emily this week in an area she named “the cuddle huddle,” a spot in her living room where a comfy bed has been set up complete with twinkly lights and colorful pillows. An hour away from a doctor appointment I hoped would confirm my treatment plan, I was nervous. We talked and laughed and shared stories from the event. She encouraged me repeatedly. As we were getting ready to leave she took a small card off her bulletin board. On it, a mantra she has carried with her since her diagnosis. As she pressed it into my hand – she looked me in the eyes and said she didn’t need it anymore. She knew the words by heart. She was passing it on to me, knowing it would bring me the same strength it did her.
I am safe. Emily is safe.
Hope, safety and joy are not reserved for those who are “cancer free” or “beating cancer.” This was something I didn’t understand several years ago. My happiness hinged on the success of treatments. Of course we celebrate good news and stable scans. We raise money for research to accelerate treatment options and help people live longer… This is what we all hope and pray for… but, hope isn’t reserved for those who have put cancer behind them.
It shines brightest in the darkness.
Thank you for your support and encouragement. Thank you for loving us and following my story. The best is yet to come!