About

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That’s me.

No, I didn’t win the lottery.

I have Stage 2 adrenal cortical carcinoma (ACC), an ultra rare, aggressive cancer with a grim prognosis that strikes .5 to two people out of a million annually. This is one time when you don’t want to feel special. I had surgery the day before Thanksgiving 2012 to remove my right adrenal gland, kidney, a piece of my liver, and resected my inferior vena cava (what in the world is that, I wondered. It’s the artery that returns the blood from my legs to my heart. Who knew?)

Not only did I miss Thanksgiving dinner, which I would normally have hosted at my house, but a Thanksgiving day trip to Atlantis in the Bahamas with my middle daughter and her family. We did make it there the end of March 2013 and it was a wonderful trip. Funny how when I was recuperated and able to eat normal food I craved turkey dinners, whether at a local restaurant or in frozen dinners due I am certain to being deprived of a real Thanksgiving dinner. I am not certain what I did eat for Thanksgiving dinner on the day following my surgery as the day of and most of the day after have disappeared from my memory. A good thing, I am told by my family who were unlucky enough to be there with me and forced to endure their Thanksgiving dinner in the hospital cafeteria. I no longer crave the turkey dinners as my cravings change constantly—what I absolutely had to eat a short while ago I no longer desire.

Except for carbs.

For the last few years my husband and I have tried to follow the South Beach diet principles and now all I want to eat are things off limits on South Beach: all carbs, including bagels, cinnamon raisin bread, pumpernickel, pasta, even the occasional toaster streudel.

Vegetables? No thank you.

It sounds as though all that ACC has done is impacted my eating habits. Nothing could be further from the truth. I am lucky in that my cancer is stage 2, even though the prognosis is that I have a 51% chance of living five years. I had several options for treatment, one of which was to do nothing, just wait for the results of my CT scans every three months. That didn’t really thrill me.

I am used to taking action, to being in control.

A remote second opinion from the University of Michigan recommended Mitotane, a DDT derivative, taken in pill form daily for three years. Although my oncologist at Dartmouth Hitchcock Medical Center did not support my decision, I went with the U of M recommendation. Rumor has it that only 20-30% of ACC patients benefit from Mitotane—how am I to know if I am one of those? Clean CT scans only prove that the cancer has not returned, not that the Mitotane has kept it from returning. Mitotane has extreme side effects, which prevents many patients (are there really many people making this decision?) from taking the drug. Because it also kills your other adrenal gland, you need to take hydrocortisone, which I have difficulty tolerating even though it does fuel my appetite and apparently my energy level.

The biggest decision of my life was to retire at the age of 58. (Sorry, Steve, marrying you wasn’t really a decision, it was a given.)

On the day I returned to work from medical leave after my surgery I gave my notice. That wasn’t part of our plan, just like cancer wasn’t. Steve was supposed to retire this year at 63 and I was to continue working until I was old enough to draw Social Security. So much for plans. But who wants to keep working, no matter how rewarding, when death looms on the horizon? Sure, we’re all going to die at some point but by the time you reach my age you assume you’ve got another 30 years ahead of you, especially when your mother is still alive and kicking—and I do mean kicking—at the age of 85. And I thought I could produce a lot of novels in those 30 years.

Now I am hoping just to finish the writings that I’ve already started.

Yes, writing is my dream and what better time to try to realize your dreams than when death is no longer just a concept but a very real possibility?

 

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One thought on “About

  1. donna palmieri January 19, 2014 at 4:09 pm Reply

    I had left adrenal removed on August 15, 2014. What a shock to have ACC when I had no symptoms. I went from zero pills to 15 pills a day including mitotane. I am at Sloane Kettering in NY and had second opinion at MD Anderson. I was toxic on 8 mitotane pills a day and now down to 4 a day which seems better. I am still working. How did you make the decision to stay on mitotane for years when there is no research to support. My docs plan to get me off mitotane after 6 months – March. It’s really hard to stay focused and positive with this diagnosis. I pray; meditate; work; stay close to family and friends – but it is always on my mind. My food interest is nill, but I eat and hydrate to offset taking all the meds ie steroids since the right adrenal went dormant. First CT was negative. How are you getting through the days? I stumbled on your blog. It was most helpful. Donna

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