By Amandalynn Jones
Alan and I met in college. He was several years ahead of me but we were both in an intro acting class my first semester, and his good naturedness and sense of humor caught and ultimately held my attention. We eloped within a year. Close to a decade and a half later he is still the love of my life.
We have been fortunate to have both found careers we deeply love, Alan is a technology trainer at a local college and I am a professional photographer and run my own business. We have two kids who keep our world spinning in joyful chaos; 11-year-old Dmitri, and two-year-old Astraea.
Hiding underneath all the wonderful parts of our life was a slow process of what we now realize was cancer’s shadow creeping in. In 2013, Alan started to have fatigue that just wouldn’t lift, and then came what we now know were other symptoms of colorectal cancer. In spite of half a dozen clinic visits over the course of almost three years, he went undiagnosed until Jan. 28, 2016. I knew before the gastroenterologist came in to speak with us that this day was going to stand our lives on end. We walked out of that appointment with confirmation that he had a large malignant mass, and a list of 10 appointments for the next four days.
He was officially diagnosed with stage III colorectal cancer the following week, since then he’s gone through 5 weeks of radiation and oral chemo, surgery to remove his sigmoid colon and place a temporary ileostomy, a port placement, 6 months with an ostomy, 4-1/2 months of 5-FU (IV chemo), and had his ostomy takedown surgery.
When I think of that first week I was struck with such immobilizing sadness as I tried to make sense of what this new reality meant for Alan and our family. At the same time I felt like the weight of it was sitting on my chest, but somehow I still wasn’t able to absorb the reality of the news while caught in the constant pace of appointments, work schedules and trying to maintain routine for the kids. I wanted desperately for everything to just stop until I had a chance to catch up.
Alan was in a totally different place emotionally, he was relieved by the diagnosis, and at one point was even excited to start the first round of oral chemo. I was dumbfounded by his enthusiasm, and understood then that he had been in far more pain than I ever knew, which broke my heart in a whole new way. He was told for years that his pain didn’t have a real cause or something he’d just have to live with forever. His diagnosis was a positive thing for him and his attitude about talking to other people about it and raise awareness inspired me to start to do the same.
A NEW PERSPECTIVE
I started taking snapshots with my phone at appointments, mostly because my nervous energy was overwhelming when I was not busy. In the beginning it was just a natural habit to document what was in front of me, but as time went on I realized that it was also an important way to remember what he’d been through, and how we felt at the time. Mostly because it all changed from day to day. Taking those photos created spaces for the experiences and feelings that I didn’t have time to process when they were actually happening. Thanks to the photos I was able to go back to those moments when I was ready.
When I did look back, I was surprised to find that in the midst of the worst year of our lives there was so much good. Chemo appointments and hospital stays became our “dates,” close friends became honorary aunts and uncles to our kids, care packages brightened our days.
Family time became more of a priority, even when time and energy was running short. We made up so many butt jokes (highly popular with the 11-year-old). Hospital gowns became superhero capes. Somehow, in spite of cancer, life was still good.
All the hard stuff I was so paralyzed by in the beginning? That was there too. Some days were awful, some were tolerably unpleasant. Most days were mixed, good and bad together. Even when happiness was present there was also fear, and tear-filled nights. Any fights between us were mostly motivated by panic and exhaustion, and the unfortunate temperamental side effects of steroids didn’t help.
The bad never overwhelmed the good though, it was miserable but we survived it. We can do ANYTHING now.
CONNECTING WITH OTHERS
Early on when I first realized the process of taking the photos was therapeutic, I asked my husband what he was comfortable sharing with others. His response was, “No drama, no fluff, nothing below the waist. Other than that, all of it. If we can help anyone else by sharing what this is like, let’s do it.”
We found a lot of hope in the early days, by engaging with others’ stories on Instagram through the @FightCRC account and other colon cancer awareness pages. We got invested in cheering them on as they reached milestones, or needed encouragement through the rough parts. Knowing that we were all in the same boat made it so much more bearable, and the support we received in return was wonderful.
It’s amazing what happens when you open yourself up to others.
Since I started posting on Instagram we’ve gotten so much love and encouragement from so many people. I’ve had spouses and parents contact me with messages of encouragement and support for my role as a caregiver. Knowing how they felt being in that role themselves has validated so many of my own feelings.
A few months ago we spent an entire evening talking with a young woman on the other side of the world via Google Translate, she’d just been diagnosed and was worried about what the side effects of 5-FU would be like.
Our family and friends who live far away have been able to follow us and feel engaged in our lives. We’ve had family members and friends tell us they got screened because being able to see what we’ve got through made it less scary for them.
It feels really good each time someone shares that with us, to know that maybe this could help someone.
The connections that we’ve made through sharing these photos have given this beast of a disease a purpose in our lives, a purpose we hope we can continue to pursue as advocates for colorectal cancer awareness.
Amandalynn Jones is a photographer based in Madison, WI. Jones and her husband Alan run the @teamnatachu Instagram account, which chronicles the experiences of a young family dealing with a colorectal cancer diagnosis and treatment.