A Peaceful Coexistence –
Three months ago, I launched patient and empowered. Although it took almost two years for the blog to manifest, to say that I had a completely clear vision for how it would play out on a weekly basis would be untrue.
I knew I had experiences I wanted to share and stories to tell, especially when they involved my family and friends. But rather than following my typical behavioral pattern, where I make a plan then obsess over its details, I decided to let the process unfold more organically.
I am telling my cancer story in a mostly chronological manner while still trying to keep things fluid. I find that writing unearths memories I want to spend some time exploring. And without question, the incredibly supportive and insightful feedback I am receiving from those reading the blog has an enormous impact on how I approach each week’s essay.
So, while I have a general idea of where I want to focus the story each week, I am leaving room for the possibility that sometimes, as the narrator, I may want to take liberties and stray a bit off the path. Today is such an example.
This Sunday is National Cancer Survivors Day, an annual event that takes place the first Sunday in June. Three years ago, I had no awareness that such a day existed. I came upon it through a Google search on resources for cancer support.
One of the true bummers that comes with being diagnosed with a rare cancer is that you don’t get a ribbon. There is no special month designated for awareness, fundraising or professional sports teams to wear the color associated with your cancer in recognition of your battle. Try as I might, I found no walk, run or race to support a cure for Sertoli-Leydig.
But I did find National Cancer Survivors Day, whose website defines a survivor as follows:
“…. anyone living with a history of cancer – from the moment of diagnosis through the remainder of life.”
What I identify with most about this description is the belief that “surviving” is a lifelong endeavor.
As I continue to tell the story of my cancer journey, it will include not just one, but <spoiler alert> two battles with cancer. During my first go-round, I equated being a survivor with being in remission – a “get out of jail free” card that facilitated putting the whole experience behind me as if it never happened.
Nope. No such luck.
A recurrence, more surgery, more chemotherapy and another Groundhog Day designation of remission has made me wiser to the fact that being in remission and being a survivor are in no way connected.
The time I spent having cancer represents a very small portion of my life, yet it has drastically altered its direction. I think that having one of the worst things I could imagine happen to me, then survive it – twice – unlocked a type of magical thinking reminiscent of what Joan Didion described in her memoir on loss and grief.
I don’t view cancer as a daily threat. Like hurricanes that are named, the time the storm holds a city hostage is minuscule in comparison to the time needed to rebuild and heal itself from the destruction. This is how I view cancer.
When I am asked to plan or attend something several months in the future, my first thought is whether it may conflict with my quarterly check-in with my oncologist.
When I exit an airplane after a long trip from Seattle to the East Coast, I feel my joints ache, not just from sitting through a six-hour flight, but from the lingering damage that I still feel in my body from surgery and 11 rounds of chemotherapy.
When I am offered a new job opportunity that requires relocation, I think about the logistics of changing doctors and my health insurance.
And when I hear of someone who has received a cancer diagnosis, regardless of whether I know them personally or through a mutual acquaintance – I think of how grateful I am for all the aches, pains and logistical challenges.
Because I am surviving.
When I was a kid during the 1980s, long before the omnipresence of social media, the looming threat of something going in your “permanent record” was used as a means to enforce good behavior. Anything from missed homework, a bad grade or poor judgment had the potential to be a blight on your unknown future.
This consumed me as a child, not only out of fear of the repercussions but also admiration for the coordination required to ensure that the file was always mailed to the correct place. Who makes sure this happens? I wondered.
Cancer is the ultimate mark on my permanent record. I have days where the mark cuts deep as if branded on my skin like a bad tattoo. But there are also days when cancer feels like a badge of honor – a source of wisdom and a reminder that surviving, like aging, is a privilege, not a right.
On Sunday, as I do most days, I will think of others who are surviving – especially those who are also battling.
And I will celebrate the fact that I too am surviving, with profound gratitude for the people in my boat who not only continue to help me row forward, but sometimes, row for me.
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If you have feedback or questions you would like to share; we would love to hear from you! Share your experience in the comments below, or send an email to hello@patientandempowered.com.
This is a perfect expression of feeling. I love this
Amanda, this means the world to me. The example you set for fellow survivors is one I aspire to.
So so so beautiful, Christine. Thank you. This moved me on so many levels. Also, the shift away from the chronology was particularly powerful (though your story of course is leaving a deep impression on me about your power, voice and experience). xoxo
Thank you, Nina. I always appreciate your feedback. At first, it felt a little strange shifting from the chronology, but I really enjoyed writing this week’s post and I have some ideas for how to do this again in the future. Sending love to you and your family!
Any ribbons you may have earned I would bet ended up in the “circular file” when your parents moved.
To all of us who have been praying for you since we learned of your diagnosis, we carry in our ♥️ a gold medal on a gold ribbon with your name on it for your courage and gift of sharing as you continue to make a difference in all you do. 🙏
Thank you, Marj! Trust me, I felt all of those prayers.
You get an A+ from me. You need a very large boat for all of us who have or are praying for you and your family. Just know you are an incredible example to so many.
Thank you, Carol.
Beautiful. This post is both inspirational, and empowering. Thank you for writing so honestly.
Thank you, my friend!
I look forward to your posts each week. Your writing is beautiful. You are inspirational. I just started chemo again, this time at the Hackensack Hospital Cancer Center (JTCC). With new targeted therapies I hope to get through this with little down time. Positivity helps.
Sue, you are a warrior. I am thinking of you always.
I can’t thank you enough for writing this blog and sharing your feelings and reactions. I am just at the beginning of this journey which started with a very concerning regular mammogram on May 4th. If I didn’t know better, I would have thought I had written these blogs. You captured my voice, fear, need to control and my eternal optimism (hope).
I have heard the diagnoses and have either met or have appointments with my medical team. Rachel, my Nurse Navigator, is wonderful and seems to appreciate my humor defense. I will start chemo soon.
I am also thankful to my dear friend Sue DeSimone. She is the one who suggested reading your blogs. Sue, and four other of my old college chums, have reconnected on FB. Each of us are NJ girls and all but one are in various stages of breast cancer treatment. How supportive we are to each other. We also represent a wide variation of time zones (England to So California) so that at any time of day or night one of us may be available for a laugh or a word of support.
I look forward to reading more. You are now on my team. And all best to you on your journey.
Peace is in every step. ~ Thich Naht Hanh
Bonnie, I am honored to be on your team, as both a fellow cancer warrior and Jersey girl. Sue has been a presence in my life since childhood and I am so glad you are leaning on each other for support. Please reach out directly if there is anything I can do to support you. Tich Naht Hanh is one of my favorites too.
A few episodes behind In my fave Netflix series “Boylepalooza”. Here you went off the path to share with “Unsurvivors” what it means to survive. And while those of us who don’t know what it means to carry a “Sertoli-Leydig” tote bag around (Boyle, key chains are next!), we ALL know and love somebody who does. So thank you, for taking a step out of the chronological to bring us a glimpse of what it’s like to “survive”. This week’s episode brings the bond of survivors even closer together (the brilliance of that is way brighter than my iPhone flashlight….and that’s wikkid bright, Boyle) and reminds the rest of us mere mortals how brave and amazing YOU and our beloved survivors were, are and will be.
TK – I think you really need a blog of your own.
I’m so glad you strayed a bit off the path – I love this post!!
I love this comment – because I can always count on you to stray off the path with me!
Beautiful! Gratitude, empathy, fierce, strong, vulnerable, true and honest – you are awesome
Love you, my friend!