As I sat down in my usual spot in my therapists office I said “I don’t want to be here”. She smiled…”Well, let’s talk about that!”
The night before I had been in touch with a cousin whom I haven’t seen in decades. I wanted to let her know about our Uncle’s death and to talk about family genetics, thus, cancer history as I could let her know what we’ve been through which may and hopefully help her, her brother and children with early detection. Not sure if I would hear from her, I was pleased when I saw she had replied to me. Good old facebook.
Her reply resonated through my entire body and settled into my bones. Her brother, my cousin, died in 2003 of cancer at the age of 48. This is the same year my kid sister died at the age of 38. It was too late to call my mom but I did. When I told her she was really quiet. Mom? “Yeah I’m here, that is just horrible, just horrible”.
I walked around my house for a few minutes not being able to settle into a chair. I felt numb, my chest was heavy and numb.
When I sat at the computer to pound out my emotions, my feelings, or to at minimum try to understand them, I couldn’t keep up with what was flashing in my head. I was reacting physically, I felt like I had been sucker punched. Why am I reacting this way? Not that it wouldn’t be difficult to hear a cousin died of the same hereditary disease that has grabbed my family with its sharp talons. What am I feeling? I could not figure out what emotion, what feeling I was having. A fleeting thought went through my head… “Anger?”
Stoic, and in a monotone voice I shared with my therapist what I had learned about my cousins. I felt my foot tapping and could feel my jaw clench as I was speaking. I love my therapist, she is great and has helped me so much in learning to first identify my feelings, and how to cope with them. She asked the questions I was afraid she would ask, which I guess is why I didn’t want to be there. She leaves no stone unturned, trust me. Still feeling sucker punched only worse, I thought out and quickly planned my route to the bathroom should these feelings come UP. Sure felt like they were going to.
Anger? Do you feel angry? I thought about it as I replied “maybe”. The word that came out of my mouth and surprised me was “Powerless”. I rarely use that word and it rings the tone of Step 1 in 12 step program. I’m not even sure all that was said and by who, but I remember the words “unjust, unfair, cruel”. With this I learned that I was angry. “No wonder you didn’t couldn’t identify the feeling, Donna, it’s new for you!” How cruel that my cousin, too, died too young. How cruel that his sister has had to walk through life the past 10 years without her brother, her only sibling. Another mother out living her child, having to bury him. How insidious.
Oh trust me, I have had hissy fits and I know how to clean out a refrigerator and cupboards to help buffer the unpleasant feelings. What I didn’t know was first, how to describe, name the emotion, but also, do so without running from it, stuffing my face so as not to feel it. I am so not good at anger. When my kid sister died I was hospitalized a few months later for “mood stabilization”. I was miserable. Broken and miserable. I knew I was angry but I didn’t know how to deal with it. I also didn’t know how to be “angry at God” that he let this happen to my family, cousins included.
I took a deep sigh and sat back in my seat. “Yes, Yes I am angry. I am very angry!” Walking out of her office I still felt sucker punched, my jaw was still clenched, but I wasn’t as confused as I was when I arrived for my appointment, feeling like I had jumped on a hamster wheel and was stuck on it. The more I thought about it the faster it went. Both my therapist and I were pleased with my thoughts, decisions, to wait to talk to my cousin until I could pull it together.
We have made arrangements to talk this evening. I am looking forward to talking to her, catching up, being in each others lives. Perhaps I have information that may help her as we both swim in a gene pool you wouldn’t want to put spent fuel in. Perhaps she will help me. “Perhaps”, said my therapist, “this will help you both heal”. Well, wouldn’t that be something!
I remember having the genetics testing done at Massachusetts General Hospital (MGH). The doctor, quite serious, asked me if my parents had met at a medical convention, genetics. I thought that was a stupid question given that I was in my 30’s when scientists identified the BRCA mutations. Later, HNPCC or another name “Lynch Syndrome” which is hereditary colon rectal cancer. I remember the look on the doctors face at MGH when I handed him the family history that my sister studiously gathered for her, the first in my family, gene testing. It couldn’t have been more clear had his jaw been sitting on his chest. I remember when the two idiot doctors in New Hampshire that stood over my brothers hospital bed 2 weeks from the day I was diagnosed, and told me that his diagnosis of two cancers had nothing to do with a mutation. I cannot tell you the anger I still feel today. I also didn’t hear them apologize when the tests came back from his second opinion at MGH and the first test they did was Lynch, and he tested positive. Their lack of knowledge became ignorance and arrogance when they refused to listen to what knowledge we had. Breast cancer (2 different cells), ovarian cancer, uteran cancer, ureter and kidney cancer, colon, colon rectal, prostate cancer. Every member of my immediate family including my parents have had cancer. The list above is the cancer portfolio in MY immediate family. ANGER! How dare this doctor have the audacity to not even LISTEN to all that my family has been through, hence learned. Five years later, to this day, I still could slap the shit out of their faces when I think about it. Long gone should be the days when patients are loyal to their doctors, not themselves. Long gone should be the days when a doctor’s ego gets in the way of a patient’s diagnosis and best treatment. As angry as I remain I hope for him, a better doctor than he should he find himself on the other side of the patients table.
My parents have never been testing and have no plans to. I think it would be futile and only serve to haunt them as to whom or which passed down the potential death sentences to their children. With cancer on both sides of my family we have, and our doctors have guessed which came from where but of course there is no certainty unless testing is done. What would be beneficial from their testing is to let family members from each side know which or what or both mutations came from, to know their risks, thus assist in prevention, early detection.
Today I’m more settled than I was yesterday. I spent several quiet hours by myself yesterday thinking about what I had learned from my cousin and in my therapist’s office. Tonight I will talk to my cousin and even though much of the news we have is sad, I hope we are able to find laughter for pockets of hope, for health.
KNOW YOUR RISKs!