Paul's Heart

Life As A Dad, And A Survivor

Understanding Versus Knowledge

A couple of days ago, marked twenty-three years since the passing of my grandmother (pictured on the right). I remember the day it happened in great detail from the conversation with her early that morning to the fateful call I got in the afternoon. She passed away from complications of ovarian cancer, her second fight against cancer, with breast cancer remission as of twenty-two years earlier.

She was the first person I would know personally to survive cancer. My grandmother would be my role model and inspiration as I faced my own battle with cancer, Hodgkin’s Lymphoma. Beyond cancer, I considered my grandmother to be my moral compass. As I often tell my daughters if the time comes that they face a difficult decision that could result in consequences, to ask themselves, “what would my Dad think of my decision?” as to how they should make their choice. I was the same way with my grandmother.

And while her passing still has left me with that counsel that I miss, it took several years for me to come to terms with it, I did finally accept decisions that my grandmother made prior to her passing.

First, a few facts. I was trained and certified in “peer to peer” counseling through the American Cancer Society. I have been working with cancer patients nearly my entire survivorship through various methods of direct referral all the way to social media. One of the main tenets I was taught right from the beginning, you never tell a patient, that you “know” what they are going through, even if you have experienced the same cancer itself. The truth is, you may have an idea of the emotions and thoughts they may have, and you may understand them, but you definitely have know what of “knowing.”

But as my family met with my grandmother and her doctor in the hospital following the surgery, in my experience, I was already not anticipating great news, because survivorship from ovarian cancer at that time, averaged two years at best. My grandmother had already faced cancer before. How much more could her body take?

The doctor stated, “everything looks great. We got it all. I would like to do preventative chemotherapy just to make sure.” When I went through my chemo, I too had to go through preventative chemo, two cycles, so, this recommendation did not seem unusual. Then he finished his thought. “I would like to do between twelve and sixteen cycles.”

My grandmother sat in the bed, with her typical comforting “don’t worry about me I’m fine smile”. Man, the money she could have made as a poker player. But of all of us in the room, two of her children, her own sister, and myself, only I was the one to be puzzled by this direction. To me, something was wrong. I pulled my mother outside, and told her that she needed to talk to my uncle, and call my other uncle in California. Something was wrong. The quantity of treatments was not something that should be considered “preventative”, but rather an active treatment regimen. Either the doctor was lying, or there was something else going on.

Only after my grandmother had passed, did we find out what actually had happened, a grand plan, and literally only two people knew about it, my grandmother and her doctor. We figured it out, as we prepared for her funeral.

One of the first things that was discovered, was that my grandmother had already picked out her burial clothing. Why would she have done that if she was going to be starting chemotherapy? The crazy thing is, her own sister who lived with her, never even noticed this had been done.

Here is what I believed happened. My grandmother had a discussion with her doctor before meeting with us about her oldest son and his family coming in to visit from California a few months later. Clearly, her prognosis was not good, in spite of what we were told. I believe the doctor told her that she may be able to buy time, by undergoing chemotherapy. Also, my grandmother was not one who wanted people fussing over her, which clearly she was overwhelmed with all of the attention that she was getting.

The days leading up to the beginning of chemotherapy, I could see that my grandmother was troubled, yet, she also did not seem to be preparing for the chemotherapy. Guides about side effects, and directions to prepare, had not even been read. And just a few days before, she did get her hair cut quite short to prepare for the likely hair loss.

But as I sat across from her in her living room the day before she died, just two days before the start of the chemo, she seemed withdrawn, deep in thought, her mind clearly somewhere else. I just chalked it up to the anticipation of starting chemotherapy. I now know it was way more than that.

My grandmother made the choices she did, and that was the way she wanted it to be. She did not want other pressures put on her about what she should do, as well as not worry anyone else.

In my years talking to cancer patients and survivors, a simple instruction was given to us, “never tell a patient that you ‘know’ what they are going through.” This was the rule, even if we happened to be dealing with a patient that was dealing with a similar cancer. There is no possible way to know what is going on in the mind of a cancer patient. We can have an understanding, but not know. And that is a huge difference.

Over the decades, the many patients and survivors that I have talked to, and too many that I have said goodbye to, all had their ways and their feelings and wishes how they desired to carry out their plans. It did not matter if they were multiple relapsers (I knew one person who had relapsed from Hodgkin’s five times!), or were facing yet another challenging late developing side effect from their treatments, I can understand what they are going through and feeling, but I do not know what they are going through. Hell, even my feelings are not always clear about what I have gone through, or what I would allow myself to go through. No one knows how it feels to be me, other than me. You can understand what I am going through, and that is different.

I understand what my grandmother was going through in the end. My emotions went the full range from grief and sorrow of her loss, to anger at what I felt was a doctor selling a false hope to my grandmother, time she did not have. It has taken over twenty years for me to get this through my head, and in spite of me missing her so much yet to this day, I do have this better understanding of what she decided.

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