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Cancer Update
A columnist returns to write again about the journey that never ends
By Cynthia Nelson Weiss

Photo: Amanda Rosenblatt

In 2005, Cynthia Weiss started a journey to treat her recent cancer diagnosis – and she took SJ Magazine readers along for the ride. Cindy wrote regular columns that described exactly what was happening in her life: the good, the not-so-good and the really bad. Her series was the most talked about story we’ve ever published. Throughout South Jersey, people stopped us and emailed us for months to ask how she was doing. We asked Cindy to let us all know how (and where) she is today.

 

It’s hard to believe 12 years have passed since I called New Jersey home. Or that it’s been almost as long since I last shared an update with SJ Magazine readers on my journey with ovarian cancer. In Sept. 2008, I wrote about my recurrence, moving to Florida to work at Mayo Clinic, and getting married.

Well, the journey continues.

Fast forward a decade plus and aside from being older – I’ll be celebrating my half century birthday this year – I also have a new name: Mom.

I officially became a mom on April 15, 2010. Having gotten married on Independence Day, I found it a bit ironic that I gained a dependent on tax day.

Today, my daughter Charlotte is 10. She stands almost eye to eye with me and she’s a pistol. A passionate yet stubborn girl – hmmm, just like her mom – she loves to read, draw anime and play Minecraft. She desperately wants a Shiba Inu puppy (well, any dog really. Or a cat, but she’s allergic). And she wants to travel to China to take care of pandas. Most afternoons you can find her riding her bike or hanging out with friends, while evenings bring singing silly songs with dad and me, exasperated over “new math” homework! But I wouldn’t trade it for anything – even cancer.

Maybe that sounds weird but I’m a big believer there is a reason I was diagnosed with cancer and needed a hysterectomy at age 33. Although at the time I may not have understood why God decided that traditional motherhood was not for me, I know in my soul that Charlotte is my child.
But it did take time for me to get there.

Dave and I had been married a little over a year and after settling into a quaint beach house in St. Augustine, FL, we began to talk about our options for having a child. I was blessed to have two friends who offered to be a surrogate and my sister had agreed to donate an egg. In the fall of 2009,
Dave and I began interviewing reproductive specialists.

When we found one who clicked with us, Dave, my sister and the surrogate we chose went through testing. Egg viability, sperm counts…there would even be psychological testing for my brother-in-law to make sure he was on board. As we inched closer to selecting a date for the IVF cycle, I got a bit uneasy.

We took a breather. Adoption seemed like a better option despite the mounds of paperwork and background checks required. Our biggest obstacle was finding the right agency to work with.

In our quest to become parents, I learned that people view stability differently. Some look at age and your income. Some, your family unit – do you have other children? Were you married? If so, for how long? Interestingly, marital status played a big role in the eyes of more agencies than I’d care to remember. Despite the fact that Dave and I had been together for over a decade – and Dave was older than me by as many years – we were not considered to be a stable couple. They wanted couples who had been married upwards of 3-5 years. I finally chose a private attorney. She knew a nurturing couple when she saw one.

The other hurdle was the health form. I, as a potential adoptive parent, had to get a physician to attest that I wouldn’t die anytime soon or have a significant health issue that would preclude me from being a mother. The irony to me is that many children who are up for adoption often have issues related to their birth mother’s drug or alcohol use. Needless to say, I will never forget the day I asked the oncologist to fill out the form.

“Why do you want to have a baby when you know your cancer will come back?” he inquired. I’m glad Dave was sitting next to me. I don’t remember the details of the ensuing conversation but I got the form signed obviously. The next day I called and transferred my care to another doctor.

In December 2009, we got a call about a baby boy who was about to be welcomed into the world. Was he our son? We met the mom. We met the social worker. I was excited. But Dave said he felt this wasn’t our child. It was the hardest phone call I had ever made – “passing” on a child I so desperately wanted. I’m not sure if it was fate or just fatherly intuition, but we learned later that the birth mom changed her mind after delivery.

Less than a week later, on Jan. 5, 2010, the social worker emailed. A baby girl had been born 4 weeks early and she needed a forever family. The fact that she was born on my grandmother’s birthday was a huge sign to me.

We brought Charlotte home when she was 19 days old, weighing barely six pounds. Wide eyed with a full head of dark hair, she was the smallest baby I’d ever seen. When I first held her – let’s just say someone got a photo of me with that “deer in the headlights” look.

Cindy Nelson with her husband Dave and daughter Charlotte

Charlotte knows the word adopted, but I’m not sure if she really understands it despite our dissimilar appearances. We didn’t really talk about it. I told her that Mommy had a “sick belly” and couldn’t carry her in my tummy so Ms. Laura did. Simple. I think that’s why she gets a little nervous when she hears me say my tummy hurts. Which, unfortunately, I say more often than I like.

For the past four years, I’ve dealt with episodes of debilitating abdominal pain. They come on without warning and for no apparent reason. Typically I’d go curl up in the fetal position, heating pad on my stomach and pray. Usually the pain would go away in a day. The first time it happened was over Thanksgiving, 2015. I ended up in the ER. No one could find anything other than scar tissue.

Scar tissue. Those two words have become the bane of my existence. My abdomen is filled with scar tissue from my surgeries and from the seven weeks of radiation I had. The doctors tell me radiation is the gift that keeps on giving – it can wreak havoc on tissue for years.

This past May, on the Thursday before Memorial Day, I ended up in the ER again. The pain was strong. But this time, I vomited – something I never do. My anxiety was through the roof. Do you remember how my story began? On the Friday of Memorial Day in 2003. With abdominal pain. I was terrified.

An MRI revealed a bowel obstruction. Caused by – drum roll, please – scar tissue. I spent six days in-patient with a nasal-gastric tube. Now that is not something I want to repeat. The good news, aside from losing ten pounds, is that there was no evidence of disease.

But I still worry. I always will.

I have an MRI and lab work annually – or twice annually depending upon my anxiety and episodes of pain. My numbers are normal. My scans show nothing new. Just scar tissue.

I try not to dwell on cancer every day. As a patient told me recently, “I’m better. I want to close that door.” Only I’m not sure if I – or anyone with cancer – can ever shut it completely. It’s always lurking.

My parents, as well as my sister and her family, moved to Jacksonville a few years ago. When my mom was diagnosed with breast cancer shortly thereafter, I was the unofficial cancer expert. Despite it being a different kind, I had had cancer. So I knew about things.

Granted, it was mom, so I was involved – going to doctor appointments, researching treatments and being her advocate. But the knowledge I gained during my journey did allow me a little savoir-faire to ask certain questions, push back when needed, and be her champion.

My passion for advocacy and storytelling has become my fulltime job. I’ll be celebrating 13 years at Mayo Clinic this May, and I love what I do. I get to meet people from all walks of life and share their stories about overcoming cancer or other complex medical issues. I develop written and video content to educate and inform consumers about the latest advances in medicine, from vaccines to prevent the recurrence of ovarian cancer to new treatments for epilepsy. And yes, I’ve shared my story, too, in hopes that it will help someone.

It is a bit funny, though. Remembering when I first reached out to SJ Magazine’s Marianne Aleardi, encouraging her to include a story about gynecologic cancer in an upcoming issue. When I was first diagnosed, I learned things I didn’t know. I realized other women might not know it either and an informational article might be helpful. Little did I realize how Marianne’s request that I pen an ongoing column would help me.

Admittedly, chronicling my experiences was not easy. I’m a writer, but writing about myself was not something I had ever done. But it actually made living with cancer a little more palatable. It gave me a sense of purpose.

Thank you for sharing my journey. Thank you for letting me educate and entertain you. Thank you for being a part of my story.

Charlotte’s been asking to see snow. I certainly can’t predict the weather, but perhaps I can share my next update in person next time.

January 2020
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