Scanxiety: The fear that you experience before, during, or after a scan that might or might not provide life altering results.
In the Beginning
In the beginning, the doctors confused me. When they talked about my daughter’s brain, they used words like “shadow” on the brain or “lesion” on the brain. In my denial, these words allowed me to continue to not understand. These words allowed me to think of Brittany’s brain cancer as a filmy shadow, a veil of something that would be easily removed. Or an abrasion, a place where tissue had been scraped off and disturbed. Like a skin lesion, I thought her healthy body would grow fresh new cells over the wound, the sore – and it would heal!
Do they use these words purposely?
The next words were confusing too. “Diffuse” tumor. Every nerve in my body jangled at the word tumor. But, diffuse sounded softer. Diffuse brought images to my mind of something spread thinly, loosely, not concentrated. Diffuse sounded like something we could handle.
I couldn’t have been more wrong. A diffuse brain tumor is better described as infiltrative. It is not a tumor that is focal, confined or has defined boundaries. Diffuse, in the case of brain gliomas, means that the tumor is like an octopus. The tumor’s tentacles have infiltrated the brain. These tumors cannot be removed because they are like a cancerous weed, roots tangled in the healthy tissue of the brain.
Brittany was wheeled in and out for scans at three different hospitals during the first week of January 2014. The CAT or CT scan, at the first hospital, took only a few minutes. An MRI scan followed. It was performed at the second and third hospitals. It took longer and was more claustrophobic. Her excruciatingly painful head was rolled into a tunnel of banging and pounding noise. Then, there was a Functional MRI, where she accomplished tasks while in the tunnel, so that they could see what part of her brain accomplished the task. Later there were Dynamic MRIs where contrast dye was injected and still later, iron was injected to study the blood flow of the tumor.
I can’t imagine what it felt like to be Brittany.
My eyes fill with tears, if I even try to understand what it felt like to be shoved into that tunnel over and over again. Each time she came out of the tunnel, we received another report. In our case, every report was worse than the one before. I gained a new understanding for the word “scanxiety”.
Her first MRI took place after her craniotomy. We all expected the doctor to say that they had bought additional time by resecting some of the tumor. Instead, we heard worse news. We learned that the tumor had jumped grades and roared back.
At the same time, in early 2014, Brittany’s cousin was also being rolled in and out of MRI and CT machines. She was told that she had stage 4 colon cancer. She was 38 years old with 2 young daughters. Stage 4 Colon cancer? We felt we’d been sucker punched.
Our family absorbed the blow and began researching not only brain cancer but also colon cancer. Then a routine scan on my brother-in-law, who has had a weak heart since childhood, came in. Doctors said he needed to get on the transplant list. He needed a new heart. Now.
As you might imagine, our family has a complicated relationship with scans. Scans, we know from experience, are not all alike. Some machines are more sophisticated than others. Some scans require ingesting disgusting liquids and others conjure up visions of nuclear power domes as doses of radioactive isotopes are injected into someone we love. Our whole family, spread across more than half a dozen states, reacts to scans in different ways. It is a very personal journey for each of us as we wait for scan results. We are all part of this emotional roulette at different levels. We all suffer from scanxiety in various ways.
Family is Forever
Brittany, my fierce and bold girl, is gone. She suffers no more. In the end, her brain scan revealed angry swirls as her cancer progressed. She is now on the other side of any imaginary tunnel you might envision. She no longer has to wait, tick tick tick, for results. She knows and understands everything. “We are one,” she told me when I was at the top of Machu Picchu.
My brother-in-law, a walking miracle, has a new heart and creates havoc everywhere he goes. It is as though he was reborn in his teens. He races cars, tells bawdy jokes and just the sound of his voice makes us smile. But transplant patients will tell you it can be a rollercoaster ride and there are scans and scans and more scans.
My niece, after more than two years of surgery, chemo and radiation had a scan today. She came out of the CT scan and was given a good report. Her most recent radiated tumor has remained stable and there was no new evidence of disease. Thumbs up, way up! Across the miles, family members embraced that news as it rippled through the universe. We held it in our hearts in different and very personal ways.
As with my daughter, I can’t imagine what it feels like for my niece to get these scans every three months. I can’t entertain the thought of how many scans she has endured in the past two years. My eyes flood with tears. Scans found her cancer. Scans told her the treatment was working and the cancer was shrinking. A scan told her the C monster was back and she needed another surgery.
Now, the scan says … “live, laugh, hallelujah”! She will celebrate her life as a mother, wife, daughter, sibling, and niece. She has found what brings her joy and she shrugs off the symptoms that the battle with cancer left her with. To me it appears effortlessly (her joy is that tangible and consistent). She will live life fully – reveling in the routine, mundane and amazing – until the next scan.
Doctors know that the patient and their family suffer stress as they ride the roller coaster of scans. They even have a name for it. Prescan psychosis or PSP.
I’m a mother who lost my daughter. I’m an aunt that loves my niece fiercely. I’m a sister-in-law who finds some sort of spiritual redemption in the juvenile antics of a man who walks around with someone else’s heart beating in his chest. I am a ready candidate for top honors in PSP. My breath gets tighter and I take shallow little inhalations. I long to be near my loved ones. I am also aware that my scanxiety is only a fraction of what other members of my family feel.
I know that my niece, her face glowing with health and happiness, has probably already made her appointment for her next scan. Somehow to outsiders looking in, she appears to have grasped that worrying is not good for her. She moves through life with joy.
Life is amazing. Today is breathtakingly beautiful. I feel Brittany’s energy humming and happy close by. She and my niece forged a special bond in those last months of Britt’s life. In my heart I can only hear one word being repeated over and over.
I think this word, this song, this beautiful broken Hallelujah, has been planted in my heart today by Brittany and that all who are in “the whatever comes next” sing it with her.
“You say I took the name in vain
I don’t even know the name
But if I did, well really, what’s it to you?
There’s a blaze of light
In every word
It doesn’t matter which you heard
The holy or the broken Hallelujah