A Pivotal Day

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A friend asked me how my pivotal day went. What’s a pivotal day? It’s the day you’re told information that will forever change your life. The day I was diagnosed with a severe and rare case of FAP colorectal cancer. 20+ years beyond the average age of diagnosis, I was told it would be a long, hard road, but that I could recover. This was the moment where I had a choice to make – complain how unfair life is or challenge it. I chose me along with a positive attitude. I’m a natural optimist so the choice was easy.

My body is different, my mind has grown. Both are amazing at redirection and adaptation. Now, my body, mind, and will is stronger. I credit my physical and mental recovery to walking my 100 lb dog, Charlie, every day that I was able; my family, and daughters who still asked for braids before school knowing how much I needed to maintain my routine; along with friends who listened and lingered. On October 24, 2023, just like that same day in 2011, I put the top down on my convertible and let the sun shine down on me, thankful and grateful for this second life given to me on a pivotal day long ago.

Rejuvenation

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Getting to step out of our normal routine is, not to be cliché, priceless.  Going to SanFran and literally walking my daughter’s daily routine, was priceless. I feel like I received a gift beyond my dreams.  Grateful to take that first step to travel, despite worrying about pain and exhaustion from desmoid tumors, was freeing. When we talk now, I can envision her steps (one day included 17k steps, and they all seemed uphill!), and the 2,500 miles between us disappears.  I’m happy I encouraged my daughters to soar, even if they flew far and wide and yet near.  Despite my cancer stages at the time of each of their flights, I wouldn’t change a thing about their decisions.  Their spirit to explore and accomplish their own dreams inspires me to continue finding my world of wild dreams and laughter and happiness and they all center around family and friends. I don’t know what the future holds for any of us, but for now, I’ll just say, “I left [a piece] of my heart in San Francisco.”

Jade Vine – pollinated by bats
View from Miss Beach Distillery

Survivor

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One word packs a big punch – survivor. Everyday I’m grateful – for the sun, the opportunity to take a walk, to be present with my family and friends. Every. Damn. Day. While my cancer is a variable of colon cancer – genetic FAP colorectal cancer – March is still my month to remind everyone to take care of YOU. Don’t take chances with your health – get screened and be proactive in taking charge of your life! Happy Friday!

Joy

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I’ve been thinking about what brings me joy – besides my friend Joy! I had so many thoughts about this and couldn’t really narrow joy down to one person/place/thing. Until I was cleaning out photos on my phone and came across this pic of me and my daughter, Victoria, who shares the FAP gene mutation. I’d been an avid cyclist in my late 30-40s until FAP colorectal cancer hit me. This past autumn, I got my courage up, dusted off my beloved 28+ year old bike – which is still a fantastic ride, thank you Giant Bicycles for making such a quality bike! – and pedaled away. I biked with all three of my daughters at different times during their visits home. Talk about joy – I could not wipe the smile off my face and Victoria captured it perfectly. I found I could still ride no-hands which drives my family crazy, threatening not to pick me up when I crash and burn, which I did not. I know everyone’s journey is unique and some hurt more than others and this can limit joy as well as exercise. My wish is that everyone reading this will find something to bring them joy each day. It doesn’t have to be a big event, could be as simple as getting outside for some fresh air and listening to nature and feeling the sun on your face. OK that might be hard for those of us in the Northeast experiencing some cloudy days, but you get my drift!

Joy

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I’ve been thinking about what brings me joy – besides my friend Joy! I had so many thoughts about this and couldn’t really narrow joy down to one person/place/thing. Until I was cleaning out photos on my phone and came across this pic of me and my daughter, Victoria, who shares the FAP gene mutation. I’d been an avid cyclist in my late 30-40s until FAP colorectal cancer hit me. This past autumn, I got my courage up, dusted off my beloved 28+ year old bike – which is still a fantastic ride, thank you Giant Bicycles for making such a quality bike! – and pedaled away. I biked with all three of my daughters at different times during their visits home. Talk about joy – I could not wipe the smile off my face and Victoria captured it perfectly. I found I could still ride no-hands which drives my family crazy, threatening not to pick me up when I crash and burn, which I did not. I know everyone’s journey is unique and some hurt more than others and this can limit joy as well as exercise. My wish is that everyone reading this will find something to bring them joy each day. It doesn’t have to be a big event, could be as simple as getting outside for some fresh air and listening to nature and feeling the sun on your face. OK that might be hard for those of us in the Northeast experiencing some cloudy days, but you get my drift!

Optimism and Hope

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Happy New Year! On NYE 2022, at a local restaurant, a couple walked up to me and reintroduced themselves – we worked on a community project 25 years ago. Cancer survivors themselves, they told me they enjoyed reading my essays in the Health section of the Philadelphia Inquirer (for new readers, mine was FAP with a side syndrome of desmoid tumors). What?  They asked when I might resume writing – I’d taken a hiatus most of 2022. That’s all the inspiration I needed. Due to my health journey, I have connections to groups of people that the average person does not. I’m seeing so much positivity in this new year.  And support. Positive support is critical to healing and a happy soul.  It is so easy to pass along a kind word or smile. Could I be highly alert to the passing of time and the merits of optimism having faced a real possibility of no time – yes. I also know from my family that I’m annoyingly optimistic and I’m damn proud of that!  I’m not saying that I don’t have down days. Sometimes I just roll with and embrace the melancholy for a short amount of time.  Then I force myself to put on those big girl boots and literally walk.  Fresh air and Mother Nature are quite the healer.  Sometimes I call a friend. This photo is named Optimism and Hope. Although geared up for the walk, still they stare and press noses to the door, anticipating the journey. My hope for the new year is that we give and receive kind words and smiles daily.  Let me know what you’re seeing out there or if I can be a friend to help lift you out of a funk.  Peace to each of you.

Rare Disease Day

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Rare disease day- a day most people never heard of, ever. It is not a Hallmark holiday but a real thing, that real people experience and survive. I for one never heard of it until I was diagnosed with FAP- a very rare, genetic disease. Then I was diagnosed with another rare disease- Desmoid Tumors. Since then, I’ve been to conferences, participated in a speaking engagement, and am vocal about my disease- all in the hopes of reaching even one person who may feel alone and scared about their future. And I have my daughter who inherited the rare gene mutation for FAP and rocks her life with zest and hope for a happy future. She choose to have her colon removed a few years ago, to save herself from certain colorectal cancer. Smart girl- taking charge over the rare disease. I’m proud of her everyday and all the other FAP and rare disease thrivers out their taking charge of their world! #rarediseaseday2022 #FAP

P.S. I choose this pic to post because it was a carefree day on a hayride to the pumpkin patch about 4 years before we were diagnosed – makes me smile.

Go- Be Free and Wild!

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Since my girls could walk, when they would go outside to play, I’d open that door and say, “Go- Be Free and Wild!” And off exploring they’d run. Gathering nature’s objects to create with, playing hide-n-seek, splashing in our little crick. Always collapsing into bed at night, tired, ready to dream. I realize I say the same thing to my pets- I open the door, and they speed off chasing a squirrel or bird, always hopeful for a catch but I know it’s more about the chase. So why when Luna jumps the fence repeatedly to go be free and wild into the bigger world outside of the safe fence (to play with a skunk!) is it frustrating and alarming. After all, she is doing what I suggested! And when my girls excitedly moved to different coasts or chose to stay and explore, is it hard not to wish them back to the good old days, when they played free and wild together, safely in the backyard? Since getting my FAP colorectal cancer diagnosis almost 10 years ago, sometimes I feel that my go- be free and wild mentality got up and ran, never looking back for me. Sure, I stay active, even trying tap dancing (which is way harder and physically demanding than I expected!) thanks to my dear friend Dahnielle. But I want the spontaneity to come back, I want to jump the fence and be free and wild, not thinking about genetic syndromes that chase me. And I’m determined to make this happen. Maybe when the temp is above 40! Today, I encourage everyone Go- be free and wild!

Take Care of You

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Happy 2022! I took a hiatus from writing and found I missed it enormously. The holidays, ya know. I dove into the season head first, 110% excited that my daughters from opposite coasts would be home together with their PA sister. I started my hiatus in early November attending a gorgeous wedding, reveling in love and life and so much dancing! Celebrated my husband’s 65 birthday at the happiest place in the world with a fun and rowdy group of loved ones. And skid into the Christmas season happy and content. Come January, the house quiet once again, I felt a little deflated, started thinking too much about my health and desmoid tumors – yep went down that damn rabbit hole. The pity party lasted a day. I dusted off my pickleball paddle, tuned up my skis, grabbed the dogs’ leashes, and took off to take care of me, determined to get some exercise everyday. I had a January reset- a trendy term these days but accurate in my case. Although I’m still and probably will always take oral chemo, I can’t let the lethargy keep me down. I listen to my body- rest when my body demands it; eat the foods that lift me, physically and spiritually (some foods are just that good!); as well juice daily with a recipe to keep inflammation down. And, most important, I move everyday that I can! This reset is probably a smart life-style choice for most people- healthy as well as cancer survivors. It’s simple – take care of you! And if you sense a friend needs a lift, be the one to reach out. Trust me, it’ll be time so very well spent.

Today is My Day

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October 24, 2011. My life, and my family’s, forever changed. Ten years ago today, I was diagnosed with FAP colorectal cancer. It was shocking. I was a healthy person – walking miles a day, bike riding, pilates, working in my gardens. My oncologist was always impressed, saying my will to participate in life is what kept me strong, mentally as well as physically- that and having 3 teenage daughters! Through my trials and tribulations, my girls have become more in tune with the possibilities life has to offer and have a tenacious grip on their goals. When we get down, we know we can call each other and get a firm hand to lift us out of our funk.

I know it’s an odd day to celebrate but I do as it makes me realize how damn lucky I am to be on this great big, beautiful earth. Sure, I’ve lost a lot but I gained much more. Cloudy or sunny, I embrace the day- ok, cloudy days make it a bit tougher to stay motivated! I have friends and family that stuck with me through the good, bad, and down right ugly. I took up a new sport – thanks to a friend- and made more fun friends. For all this, I am grateful. At the end of the day, I fall into bed, content and happy.