I was normally a strict rule follower. In fact, I took pride in my ability to get permission as opposed to beg for forgiveness. People said I was a good girl. I did what I was told and thrived on the praise associated with my steadfast obedience.
Until I was diagnosed with stage four cancer and rules didn’t seem to matter as much.
I had many well-meaning friends and family members who wanted to give me advice on how to handle my cancer diagnosis. People tried to tell me what to eat and drink, how much to sleep, whether I should continue working, books I should read, medical research to study and which brand of lotion I should use or type of socks I should wear in the hospital. My favorite was when someone told me I should take my diagnosis more seriously. Really? Evidently I was laughing too much for a person with incurable stage four cancer. Go figure.
The doctors didn’t even give me that much advice. When I asked if there was anything I should be doing or not doing, my doctor and nurse both shook their heads. When I pressed them on whether I could have a glass of wine, the nurse looked at me with a sympathetic smile, “I think you could have a bottle.” (Thank you. I think I’ll do that.)
I know the suggestions were out of concern for me and that everyone wanted to help me get better. And if they felt a diet or sleep or work or knowledge would help me do that, they wanted to let me know. And I love them for that. They cared enough to tell me that they wanted me to live. Thank you!
I wished it were that easy. But in my heart of hearts, I knew that would only get me so far.
It’s not that I didn’t need or want help. The amount of information coming at me was overwhelming. The large folder stuffed with pamphlets and brochures; Metastatic Melanoma Conversation Kit: Have the conversation of a lifetime. (I wonder who made up that snappy title?) The list of treatment options and what to expect. Another folder with general cancer information. How to deal with a terminal illness. Getting your financial papers in order. Legal documents. Talking to your family.
Other questions swirled in my head. Should we plan a shotgun wedding? What was I going to tell my boss and my staff? Who was going to take care of my dog after I died? And what was I going to do with all the meetings on my calendar?
Suddenly it hit me – I was going to die so what the hell?! I can do whatever I want because none of this will matter in six or nine months when I’m laid out in a wooden box or scattered in the wind somewhere.
So I did. Which turned out to be essentially the opposite of what people said I should do. I didn’t change my diet (which was relatively healthy anyway.) My bedtime remained at news hour time. Work only stopped when I was too drugged and hospitalized to function. I continued to hike high peaks and bike to work. My dog still walked me around the neighborhood.
Reading medical information was out of the question. Who cares about PD-1 blockers or T-cells or even how to pronounce the full names of the drugs when you’re told they probably won’t work? I did use the lotion and the socks people bought me. And I also kept laughing and living and loving life.
Don’t get me wrong, I was scared shitless. The average survival was a mere nine months. But no amount of food, sleep or research statistics calmed my fears. Those were mine – all mine – and I had to find my own way to keep from falling apart, or worse, giving up. This was my cancer. My life at stake. As much as I would have liked a guide, I was on my own. Blazing a new trail on a mountain I never intended to climb. One step at a time.
None of this is to say one should ignore all the great advice and information that is out there – or to even follow mine. I believe there is no right or wrong way to deal with cancer. Just your own. This is your journey. Your path. For better or worse, you are the main character in this book. And I encourage you to write your own story.
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I know I broke many of the cancer patient rules. I’d be curious if others had a similar experience. What was the best piece of advice given to you – serious or outrageous, followed or ignored? Post a comment below and start writing your story.
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