Sandi's Story- by sandi liberatori

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As a school kid, I loved historic novels. One of these novels was "Hiroshima," the story of survivors of the atomic bomb which was dropped on that city. I was horrified by what occurred, but also morbidly curious. For years, I followed stories about the survivors, and what happened to them years later due to radiation exposure.

I never would have guessed that the information, to which I exposed myself, would someday have meaning in my own life, due to my “exposure” to radiation. Such a strange little coincidence. 

In 1983, I was a law student, home visiting my family during a break. As I was playing with my necklace, my fingers touched something on my neck. It felt like a golf ball. My Mom and I were in shock when we realized we could see the “lump.” My Mom wanted me to wait a bit, thinking it would disappear. She was hopeful and scared. I was just plain scared. “I will not wait---I am getting it checked out NOW!” Little did I know that, down-the-road, these words would become my mantra when dealing with any weird physical or mental feeling I had.

My small town doctor and local hospital confirmed my worst fear after surgery. Weirdly, I remember coming out of the biopsy and overhearing a few nurses talking about me in the recovery room. They said something like “she is a cute, young thing.” (Um, really…in the recovery room?), followed by something like “poor thing. It looked suspicious.” And I was off on the roller coaster that IS cancer. CANCER! That’s all I heard; that’s all I knew. Hodgkin’s Disease meant nothing to me at that time—never heard of it. The doctors in my small town had, by coincidence, only seen it once before---misdiagnosing a young patient at first because it was rarely seen. They caught mine because they missed her’s.

Then, another weird coincidence; I had a call from my law school Dean. She revealed to me that one of my law professors, a popular, young wunderkind, also had Hodgkin’s Disease. A dynamic, entertaining, and sometimes sarcastic professor in class, he reached out to me almost shyly and offered advice. His story was that he was lecturing at another school, when he realized that he ran out of breath and couldn’t keep speaking. His Hodgkin’s tumor was pressing on his windpipe. As an attorney AND a former medical student, the professor naturally was an avid researcher. He told me that when he realized he had read medical journal articles about the disease that his oncologist never heard of, he quickly made a change. He researched and found a  young oncologist at a major cancer research hospital in the same city and made the switch. “Go to him—mention my name,” he told me. I did, and I remain eternally thankful to the professor for that very valuable referral to my oncologist. Thirty-five years later, he remains my primary oncologist and the “band-leader” of the team who deal with my late effects from the lifetime dose of radiation I received.  

Radiation cured me of Hodgkin’s but set me up for my own "Hiroshima".  I have had endometrial cancer (hysterectomy); breast cancer (bilateral mastectomy); kidney cancer (partial nephrectomy); gall bladder removal, blood clots in the lungs, multiple basal cell carcinomas (removed in a variety of ways); carotid bruit; and subclavian artery stenosis (right side). I am sparing you a lot of the gory details. Suffice it to say, I have been through a lot. Are all my problems related to radiation treatment? Who knows? But I have had an awful lot of problems that didn’t seem to happen to my own parents until they reached their late 70’s, and I am not there yet; (I am a 35-year survivor at age almost 62).

Radiation saved my life, but might kill me in the end. Nobody gets out of this life alive, right? I don’t regret my choice to go through a tough treatment. I'm still alive. I know of other Hodgkins patients who were not as lucky. I graduated law school, got married, had two beautiful daughters, and lived a normal life for about 20 years or so after treatment.  

Twice a year for many years, I head to the city for my check ups with my oncologist, in fear and anxiety, which I now recognize as probable PTSD.  I know there have been other effects on my career and my family, which of course makes me sad. When my primary care physician asked me about depression, my response was, "After all this, who wouldn't be depressed?" But my depression made me reach out to this wonderful group of Hodgkin's survivors online. Hearing their stories, I no longer felt like a medical weirdo or a hypochondriac. This connection, that has turned into "Hodgkin's International", has helped me tremendously.

Still living and looking for coincidences!

Sandi Lieberatori

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