Wednesday, August 15, 2012

The Difficult Patient

It's a strange feeling going through a treatment plan that no doctor completely agrees with. I disappointed the conventional docs when I chose to go to Arizona for IPT and I have now disappointed the alternative docs with my choice of radiation. Between my two choices, I have managed to alienate, in some way, every doctor I've spoken with.

Sorry, docs.

I'm not trying to be difficult (despite what my doctors might think). But cancer is tough. Some people die and some people live - regardless of the path chosen.

Recently I read a book called "Love, Medicine and Miracles" by Bernie Siegel. I avoided reading this book for almost 9 months because, honestly, a book about love and miracles seemed a little too new age-y for someone who believes in the facts. I didn't want to read another book about "visualizing" or "finding my inner goddess" to rid myself of cancer. Plus Mamma Bear really wanted me to read it (I currently have four copies, all from her) and I guess that stubborn "parent pushes/child pushes back" relationship doesn't necessarily go away as we age.

Eventually I realized that the book was written by an oncologist who decided to study (with facts!) the success stories of his patients; instead of studying why treatments were failing, he began to study why certain treatments, or more importantly, patients, were succeeding. (Siegel might want to consider changing the name of the book to "How Cancer Patients Succeed").

If two people are given the same diagnosis, why does one live and the other die? Why do certain people defy the odds even when the odds are stacked against them? What makes a patient thrive?

Siegel says there are three categories of patients.

"About 15 to 20 percent of all patients unconsciously, or even consciously, wish to die. On some level, they welcome cancer or some other serious illness as a way to escape their problems through death or disease. These are the patients who show no signs of stress when they find out their diagnosis.

In the middle of the spectrum of patients is the majority, about 60-70 percent. They are like actors auditioning for a part. They perform to satisfy the physician. They act the way they think the doctor wants them to act, hoping that then the doctor will do all the work and the medicine won't taste bad. They'll take their pills faithfully and show up for appointments. They'll do what they're told -- unless the doctor suggests radical changes in lifestyle -- but it never occurs to them to question the doctor's decision or strike out on their own by doing things for themselves that just "feel right." These are the people that, when given a choice, would rather be operated on than actively work to get well.

At the other extreme are the 15 to 20 percent who are exceptional. They're not auditioning; they're being themselves. They refuse to play the victim. When acting out [the role of victim], patients cannot help themselves, for everything is being done to them…Exceptional patients refuse to be victims. They educate themselves and become specialists in their own care. They question the doctor because they want to understand their treatment and participate in it. They demand dignity, personhood, and control, no matter what the course of the disease."

What's up now doc?

Turns out I'm exceptional. And according to the book, the patients doctors deem most difficult end up doing the best over the course of their treatment. The difficult patients are the ones who live.

So go ahead: call me difficult, stubborn, and controlling.

The truth is, I've struggled a lot over the last 10 months over this idea of control. Who do I listen to? Who is the most knowledgeable? Do I trust my gut or theirs? Who has ulterior motives? Who sees me as Dana Frost, the person, not case number 347?

But what I've realized is that none of these doctors have all the answers. In their own way, they all want to help me, and help get rid of the cancer. But patients die at the hands of the alternative doctors and they die at the hands of the conventional doctors. The reality is, there is no right answer (if there were, 30% of the world wouldn't be suffering from cancer).

So, I'm stuck listening to myself. And as someone who was average at best in science class, and in no way an expert in the field of medicine, it can be quite a discomfort putting my opinions ahead of those of the doctors. And because of this, I am considered a difficult patient. I ask questions, I refuse treatments plans, and I change my mind - often.

There are times I wish I was more of an average patient. It would certainly be easier to be one of the 60-70 percent of patients who never questioned and just listened. I can imagine the relief one feels when they are told what the decision is and they never have to think about whether or not it's the right decision. And I'm sure it's easier to play the role of the victim. To wallow in this terrible thing that happened to me. To give up any sort of control of the outcome. There are days I wish I could be more like that. Days where I could just give up control.

But that's just not me. Besides, who wants to be an average patient anyway?

Call me difficult. Call me demanding. Just don't call me average.

And whatever you do, don't call me a victim.


  1. YOU ROCK!!!! Keep doing what your doing

  2. Wow! I cried with joy when I read this this morning! I KNOW that you ARE EXCEPTIONAL, always have been, always are. And yes, maybe you were right too, when you said you were not the warrior. Maybe you are right, maybe we need a kindler, gentler approach. Instead of the "War on Cancer", maybe like the "War on Drugs" we are losing the battle. I believe the statistics are now one out of 2 men and one out of 2.5 women will get cancer in our lifetime. This is in reference to our children born after 1980, MY CHILDREN. Now you know why I am a little passionate about this? Instead of fighting ourselves and our bodies. Doesn't it make more sense to honor the "dis-ease"? To listen to what the body is trying to tell us? Why are we having this pain? is it the toxins we are consuming and breathing and slathering on our bodies? Is it the gluten in our diet? Unresolved pain? No one has all the answers. But like my friend Sue Ansari, (Thriver, Laughing Yoga and Raw Food Chef extraordinaire) says, maybe Love, Laughter and the spread of those healthy endorphins is part of the answer?! So I am sending you, my daughter extraordinaire, exceptional women and thriver, all of my love and bright healing light as many of my friends are doing now too. Can you feel it?! You my HEROINE! Yes, that's it! My beautiful talented daughter. You are not a warrior you are a heroine! I love you dearly!
    With Love, Mom
    PS LOVE the advice to Dr Siegel on the title of the book too. Two more books coming your way. Dean Ornish, MD Love & Survival (all the studies proving this new agey idea of Love as Medicine) and the best one so far is "Healing Essence, the Proven Path to Wellness by Mitchell L. Gaynor, M.D. and Medical Director, Cornell Center for Complementary & Integrative Medicine. This was recommended to me by Pamela Turcyzn, the talented artist who created the mandala we used in our meditation at our family retreat. Isn't it amazing the people we meet on our journey to wellness? We are love you and are inspired by your writing, your candor and your essence. Love Always, Mom

    1. ABSOLUTELY,, love, laugh and let the lymph flow!

  3. Ok. Tears are flowing down my cheeks as I read your blog Dana and your reply Lisa. I'm amazed at your journey Dana and the wisdom you share so poignantly. Much love and healing thoughts sent your way. Gretchen

  4. I am a friend of your mothers. I read this book when I was in my early 20's (am now nearly 42) and it changed my life and the way I look at health. The impact was and has been incredibly powerful. It is my go to book when I find out friends have cancer. The odd thing was it was left in the back seat of a flight down to the islands and I had 4 hours of plane rides to read it. I do believe to this day that mind of body is a huge component of anyone's path to cure dis-ease. "Unconditional love is the most powerful stimulant of the immune system. The truth is: love heals. Miracles happen to exceptional patients every day—patients who have the courage to love, those who have the courage to work with their doctors to participate in and influence their own recovery." Your doing great--Keep the faith and be true to your self.


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