When someone is stricken with a serious illness their world is rocked. I know, it has happened to me with cancer twice. And, in this age of social media, you might well go searching online for information and posting your story of fear and uncertainty. The health-related communities are full of introductions from newly diagnosed patients or their loved ones. The community I found was lifesaving. But I wanted to make a comment and tell a story. The comment: when sick people do better, or even get well, they go on with their lives and they may no longer post online. They are, too often, the invisible success stories that I think – for most illnesses – are the norm.
As we make progress and people seek out and get better treatments, even where the picture may have been bleak to begin with, patients may recover. Yet their story is rarely reported and the online readers are left with that image of the initial bad news.
Here’s what I mean: In the spring of 2012 a college freshman named Kara was intermittently getting a feeling of deja vu. Sometimes she’d get a metallic taste in her mouth. As this continued it was unnerving. But Kara is an international business student and didn’t have time for doctor visits. When she got home from college, to Pittsburgh, her mother took her to the pediatrician. The doctor diagnosed it a migraine. That was last June. But the problem continued into July and finally mom insisted Kara see a neurologist. The doctor was all booked up for months but a pleading mom got Kara in on the doctor’s lunch hour. He quickly knew the problem was serious and definitely not migraine. The next morning Kara had an EEG and an MRI. The news was bad: grade 3 astrocytoma, brain cancer. Kara’s college girl world of classes, friends and sorority sisterhood was crumbling.
The next stop was a brain biopsy and exploratory surgery in her home town at a major medical center. The doctor removed what he could of the tumor and then gave more bad news: Kara had, at best, two years to live and chemo and radiation would not be effective. He recommended no treatment.
Kara’s family did what most of us should do – they sought a second opinion. That brought them to MD Anderson Cancer Center in Houston where a team there performed a second surgery and removed much more of the tumor. Now 97 percent was gone. That team saw value in following with chemo and radiation and it was effective, although it required Kara to live in a Houston apartment for the month of October and into November. What propelled the young woman was the dream of going back to college in the new year, to become a sophomore and resuming her studies and life with her friends. Three of her close friends from college came for Thanksgiving. One was my daughter, Ruthie. But Kara’s health remained uncertain as her platelets had crashed. During the Thanksgiving holiday Kara needed a second platelet transfusion and she was in and out of the hospital.
Fortunately, Kara’s blood system recovered from the toxic effects of the radiation and chemo. From a low of 15,000 platelets she climbed back to 266,000 and the doctors and Kara were confident she could, in fact, go back to college. An MRI back in Houston confirmed she was “clean” from the cancer. All systems were go!
The other day Kara’s parents drove her back to college, a triumph for all of them and the medical team who thought they could do better. Kara starts classes this week with a new head of hair and hope for a long future. She knows life is now one day at a time, but she is now, once again, living a full life without limitations.
Kara has not written this story just as many people who feel better do not share their stories. They move on with each normal day without doctors, pokes, and tests. Keep that in mind when you read sad stories online and know it is often just a slice of the story of that person who was affected by a diagnosis. Many, like Kara, are just too busy living to write the happy later developments. Forgive them. They care about you but they are also moving on.
Wishing you and your family the best of health,
Andrew is the author of the new book The Web-Savvy Patient: An Insider's Guide to Navigating the Internet When Facing Medical Crisis. He is a respected medical journalist and 15-year leukemia survivor. He founded healthtalk.com and patientpower.info and has hosted almost 3,000 online talk shows for patients with chronic conditions and cancers. Many of America's leading medical centers support ...