By Karla Guererri
“Come on and let me know: should I stay or should I go?” — The Clash
This is exactly how I was feeling about life three years ago. More than thirty years after radiation treatment–huge amounts of crudely aimed cobalt radiation to the mantle field–some serious late effects had come at me in full force, one after another. My aortic valve was already under surveillance by the cardiac team when the breast cancer diagnosis came in. Over the next three and a half years, I underwent a double mastectomy, open heart surgery for a new aortic valve, and finally, a thyroidectomy. I was trying to hold my health together and stay afloat financially at the same time, performing contract work that barely paid for the health insurance and associated costs. I was sinking deeper into a bottomless hole.
Surprisingly, it was the thyroidectomy that nearly did me in. That operation was supposed to make me feel better by getting rid of a malfunctioning gland that had been taken over by a multi-nodular goiter and compensating for the function with a high-tech, laboratory-made pharmaceutical product. Instead, it sucked the life right out of me. Sleep became my default setting. In the morning, it took every iota of energy I could find to open my eyes. I would lie in bed, motionless, willing my eyes to open. First one, then the other. Could it have been like this for Lazarus? I would look at the clock. Sometimes it took an hour or so to get out of bed and another hour to get dressed and ready for two or three hours of tutoring students for the local school district. I wondered how I would ever survive, and I didn’t really care. I reasoned that I could credit myself with some satisfying accomplishments and that I had a good life. My daughter was grown and my house was paid for. Maybe I would just grow weaker until I drifted away to whatever lies beyond. It seemed that it wasn’t even going to hurt. Should I stay or should I go? The scale was tipping in favor of GO.
Right around that time, I began communicating with the people in a closed Facebook group for HL survivors with late effects. Knowing that they were there gave me enough encouragement to make a conscious decision to hang onto life, even though I did not know how that would happen. The first step was to find a new endocrinologist. I knew that my most significant, the fundamental problem was that I no longer had the gland that runs all the systems of the body. The replacement hormone prescription I was getting was not adequate, regardless of the numbers generated by my blood tests. I wanted to try “ArmousRThyroid, a non-synthetic product made with desiccated porcine thyroid, but my doctor refused, saying that the quality could be inconsistent. Feeling that I didn’t have much to lose, I set out to find a doctor who would listen to me. Ultimately, a referral from a friend got me an appointment with an endocrinologist who not only allowed me to try a new medication, but she listened to all of my symptoms and worked with me to find solutions. I started feeling more energetic and clear in my mind thinking within a month, but I was still bogged down with some extra weight that had begun accumulating after my thyroidectomy, and it was interfering with my mission to find my best health.
Again, my internet associates came to the rescue. Come to find out, many long-term HL survivors have found better health through particular eating plans. Some swear by plant-based nutrition and others prefer the “Specific Carbohydrate Diet” or the “Whole 30 Diet”, among others. What made the difference for me was the “Fast Metabolism Diet” by Haylie Pomroy. I bought the book and read it with interest, taking notes and planning my new life. I thought I had a clean diet before, but this was something else.
First the forbidden list: coffee, tea, alcohol, wheat, corn, sugar, any and all dairy, and sadly, potatoes. It was complicated, requiring different foods in particular combinations at strict intervals on different days. After a week of trying to keep track of everything, I got an app for my phone to organize it all. And I began to feel like a living person again. I no longer gasped for breath, even when carrying things. I could think clearly and quickly without fighting through the brain fog. No more need for naps. And the added bonus was that I was searching the recess of my closet for my old clothes- two sizes smaller than I had been previously wearing.
Now, with almost 41 years of post-HL life, I am very much alive. Those of us who have been irradiation and lived to tell about it know that we will never be “all better,” but every setback doesn’t have to be permanent, and health can always improve.
I wish all of my HL sisters and brothers the best possible health in the New Year!”
Please note: the thoughts and opinions expressed within the content are solely the author’s and do not necessarily reflect the the opinions and beliefs of Hodgkin’s International.