Twenty five years ago I was sitting in my bedroom playing doctor with my dolls. My grandmother, who was babysitting me that day, overheard me say to my dolls that they had to take their pills or they were going to die.
At the time I was going through intensive chemotherapy for my ALL diagnosis. The treatment was so rough on my little body that the doctors decided to give me a break and take me off all meds. Apparently my unconscious mind was scared by this and in my pretend play with my dolls it came through. My grandma told my parents what she heard and they immediately began giving me a children’s multivitamin each morning so I would have a pill to swallow. I was so young; I didn’t know the difference between a vitamin and prednisone.
Fast forward to this past August when I celebrated 25 years cancer free. For all intents and purposes I consider myself really healthy. This past October I completed my 3rd Team in Training endurance event. It is hard to believe that the same little body that was too weak to walk upstairs all those years ago has completed full marathons! Even more shocking is how much I thought I hated running.
Growing up I led a fairly normal life–considering. Once I was declared cured the doctors sent me on my way. I played sports, JV but still. I went out with my friends, and I went off to college. But when I got to college, stomach aches I had suffered my whole life rapidly got worse. The pain was so debilitating that at times I couldn’t walk to class and often in the morning I would get sick to my stomach.
Because of my medical history I had all kinds of tests done. Blood panels, full work ups, ultrasounds, and even a colonoscopy. I was barely twenty years old and had a colonoscopy, not fun! But every doctor I saw said I was fine. I started to question if it was all in my head; if the pain I was feeling wasn’t as bad as I thought.
Back when I was in treatment, there were few, if any, studies or even conversations happening around the long-term effects of chemo. How I was I supposed to know that the severe stomach aches I had all my life could be linked to the chemo my 4 year old body endured? It seems so obvious now, but 25 years ago all that mattered was that the cancer was gone.
It turns out that I have severe food intolerances and my body can’t digest many common foods. So far there is no way to know for sure that chemo directly caused these intolerances, but I wonder if anyone else out there has experienced something similar after going through intensive chemotherapy?
The list of the foods I must avoid is really specific in that I must avoid gluten, any dairy that comes from a cow (that means cream, milk, butter…you know the good stuff). I also cannot eat any chicken eggs, and I have to avoid all mustard. I mean who has a mustard allergy!?
As I have uncovered the foods to avoid, I have been tested for hundreds of food reactions. It turns out my gut is really damaged and I had a reaction to every single food on the allergy panel. I remember getting the results and the nutritionist saying “Wow, no one has ever had even a low level reaction to every food” as if I had won some prize. It turns out recurring pain I have battled for what seems like my whole life may all be linked back to the same drugs that saved my life.
Believe me; I know how lucky I am to be alive. But the long-term effects of those toxic drugs need to be addressed. It is one of the many reasons I raise money for LLS. Funding research for life saving drugs is incredibly important, and so is funding research for long-term effects of drug treatments. Donor funding, Light the Night walks, Team in Training, Man and Woman of the Year and other campaigns from The Leukemia & Lymphoma Society are why I am alive today.
The quality of life after cancer is improving by the day. If you had asked me even 5 years ago if I would be writing about my food intolerances on the LLS Light the Night blog I would have said no.
I was focused on looking forward, trying to find new doctors who specialize in food intolerances, allergies, gut health. I didn’t think anyone noticed, cared, or that it even mattered what happens after you get the cured card. It never occurred to me to look back, to request my medical files and start back at the beginning. But with the research improving the survival rates, quality of life and investments in less toxic therapies are more important than ever.
I still don’t know if I will be able to have children. I still don’t know exactly how to heal my body from the inside out. But I do know how lucky I am to have incredible care, doctors, and support. I know that the money we raise together is why the children going through treatment today, will be able to live happy and healthy lives tomorrow.
-Written by Sally Ekus. ALL survivor, Team In Training (TNT) alumni, Light The Night volunteer, and Society Connection co-chair.