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To the Surgeon Who Diagnosed Me With Cancer at 13

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To the surgeon who diagnosed me with cancer,

Do you remember me? The sick 13-year-old who you just performed major surgery on? Do you remember walking into my hospital room? My plain, white walled room had a mini flat screen TV with the Syfy channel turned on. I bet not many kids you see watch the Syfy channel. It must have been a shock to you. Do you remember talking to my mom and telling her, “According to the pathology report, your daughter has a rare tumor called carcinoid. Unfortunately, her cortisol levels did not go to zero like we expected, do you know what that means?”

My mom’s a nurse, you know; she understands everything that comes out of your mouth.

Did you know I was in the room too? I was the girl who was sitting in an uncomfortable wheelchair hooked up to an IV pole via a PICC line. I was also hooked up to a canister via NG tube that was sucking out stomach acid to help settle my stomach after my emergency surgery. I was in pain from being one week post-op and having a chest tube removed. You must have been unaware I was in the room because the next words you said to my mom were, “Your daughter is going to need another surgery.” You did not even bother to explain to me what “carcinoid” meant or why I would need to have another surgery.

Do you know how hard it is to be told by one doctor, “You only have one tumor and lung surgery will be your cure,” only to be told by another, “Your daughter is going to need another surgery”? I know you knew I started crying afterward because you told me, “Do not cry, why are you crying?” Why would you tell me that? I was a sick teenager who was under the impression I was cured and would not need any more surgeries. And I was just told I was not cured and would need another surgery. I am usually pretty tough, but you must have not realized the hell I just went through.

Are you aware the surgery, prior to my lung surgery, was an emergency surgery? Did you know I woke up in the OR during the first surgery with a breathing tube still inside my throat? The surgeons, nurses and anesthesiologist were still suited up in their blue gear. They all had relieved faces when I woke up and the surgeon exclaimed, “Thank God she woke up!” Until this day, I have no idea what happened in the OR room that early morning. The ICU stay was horrendous. So many noises varying from children crying and machines beeping. Absolutely no windows or color what so ever. I experienced so much pain and my blood pressure was in the 200’s. I could not function; I could not even sit up on my own. I honestly thought I was going to die.

How many people can honestly say they were close to death and they knew it? My mom had to explain to me what carcinoid tumors were and why I would need another surgery. I feel like you could have attempted to explain everything to me. I was not a five-year-old, I was 13 and perfectly capable of understanding and comprehending everything.

I ended up at the National Institute of Health, you know. They performed my last surgery there, removing my right lower lobe of my lung and all the lymph nodes leading to the right lung. It was not a cure surgery though. I still have tumorlets in my right middle lobe and they found one tumor in my lymph node. I now have carcinoid syndrome and I have to do octreotide IM injections every four weeks. I am also closely monitored by my amazing oncologist and endocrinologist.

I should thank you though. You made me more resilient when facing physicians who lack empathy about their patient’s situation. You also helped me realize I want to be an advocate for fellow zebras like myself.


The sick 13-year-old with a rare cancer diagnosis

Photo credit: LightFieldStudios/Getty Images

Originally published: February 21, 2019
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