How I got over my cancer scanxiety and got my gratitude back

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Laurel Felsenfeld at a 2015 Relay for Life event in Michigan

After 3-1/2 years of living with a rare, aggressive cancer, I hit the wall of psychological fatigue.

Active treatment was over, but with the threat of recurrence ever present, the cancer was still very much a part of my life. I was tired of living on the razor’s edge of between having cancer, and having had cancer.

Gratitude was in short supply.

Back in 2012, I went to the doctor because of persistent pain in the left side of my pelvis. Treatment for me started and ended with a surgery to remove the tumor and run pathology tests to see what it was. When the surgeons opened my belly they found what only looked like a benign nerve sheath tumor. It turned out to be a soft-tissue sarcoma -- an entire group of cancer types, some so rare they affect perhaps a handful of Americans every year.

The surgeons delicately poked and pried it apart and peeled it off the nerve in bits and pieces that spared the nerve entirely. This was very good news for saving my ability to walk, run and bike, but potentially very bad for being alive in five years.

I went to one of the country’s top cancer treatment centers for another opinion.  The physicians there were as perplexed as my hometown hospital team.

I was given what I call the W3 plan—wait, watch, and worry.  I would have radiation-laden CT scans every three months, then every four, then six. This would go on for the rest of my life. I was told the cancer would likely recur within a couple of years, and when it did, I would be back at square one.

Living in specified increments waiting for the shoe of recurrence to drop and stomp out the future is hell. Fear hangs over all decisions -- Do I keep working as a nurse case manager, a job I love, or take early retirement so that I don’t miss the opportunity to travel?  Do we sell the house and go someplace warm now?

I split the difference, cutting my workload in half, and buying a Florida condo to escape Detroit winters.

And I made a deal with myself:  If my scan was clean, I'd stop monitoring for recurrence.

At four years post-surgery with another clean scan, I told my oncologist all the reasons I wanted to stop. I worried about radiation exposure, about another huge surgery requiring a year-long recovery, and most important, I was tired of "scanxiety."

I also worried about her reaction, given how iron-clad my initial doctors were in dictating my protocol.

To my surprise, she did not dismiss my objections.  She admitted that the type of cancer I have can grow very rapidly, so there's no guarantee of catching it at a surgically manageable stage.  She agreed that the risk of surgical complications is very real. And she acknowledged that if my cancer does come back, it likely will be more aggressive, typically with metastasis to the lungs and/or liver, and there are few options.

We agreed to a compromise:  I would alternate lower-radiation MRIs and a chest x-ray with the torso CT scans, having tests once every six months  until year  5, then once a year for as long as I choose.

I am grateful that my oncologist was a willing partner and did not give me the “my way or the highway” talk I'm sure I would have had from the other specialists I saw. 

As Thanksgiving approaches, I realize that there is much I am grateful for, living with cancer, the gifts that cancer brings those who are willing and ready to receive.

If it were not for the cancer I would not have made positive changes in my diet, my attitude, healed broken relationships, got on stage for the Moth radio hour to a standing ovation, taken up drawing and painting and yoga again, joined an online support group where I am loved and supported by hundreds of friends that truly understand what this is like, that I can share my most intimate feelings with, even if all I know of them are pseudonyms and avatars.

If it were not for cancer I would not have transformed into a human being,  present and  grateful for all the miniature miracles I overlooked in my pre-cancer,  Type A  life of human doing:  rainbows, hummingbirds,  raspberries, leaves turning to crimson and gold, the scent of my newborn granddaughter ‘s perfect little forehead.

When you view life through the lens of a life-threatening illness, everything is more  beautiful  … more beautiful  because you are looking at everything as though it is the first time, and because you fear it could be the last.  This is a gift, a gift to be grateful for, on Thanksgiving Day, and every day. 

 Laurel Felsenfeld is a registered nurse care manager empowering families overwhelmed by the care of aging, ill or injured loved ones to navigate the health care system and become effective advocates. She is certified as a case manager and holistic cancer care educator and uses her 30 years of professional experience and personal cancer journey to mentor others living with cancer. She can be reached at kickncancersass@gmail.comThis guest column appears on Diagnosis: Cancer through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 900,000 patients and caregivers.