First of all, I don’t want to pretend that I’m a master of any kind, nor do I live under the delusion that my thoughts and opinions really make a difference to anyone other than myself. As a writer, it helps to write things down, so that’s the primary purpose of this blog. I don’t look for comments or praise, but I look for the cleansing of cobwebs in my brain. Sometimes, writing helps, sometimes, not.
I am in the midst of a dark day. The sun is shining brightly, I’ve not had to take any pain relief and I’m at home with my beloved family. Yet, I feel the familiar fingers of fear, desperation and anguish closing in around my heart, making me feel shut off from those around me. I’m hard pressed to communicate these inner emotions, but I’m going to try.
Summer, my favorite season of the year, never really happened for me this year. My daughter had a great summer, but she slept away from home (without the rest of her family) for eighteen of those summer days, not to mention her many day trips. While I am incredibly proud of the young woman she is becoming, my heart grieves over her growing up. She’s growing away from me … rightfully so … but there is a mourning process involved in her maturation.
Same goes for my son. Only sixteen months younger than his sister, he, too, is growing beyond belief (both physically and mentally) and seeing the photo that showed him now taller than his dad was a heart-stopper. My “little boy” is gone and a delightful young man is taking his place. While I know this young man, I also feel like I’m getting to know a whole new person as well.
I had disease progression which resulted in a change of treatment and undergoing 20 radiation sessions to my left hip socket in hopes it would reduce the risk of fracture due to the increasingly active and growing tumor there. Time will tell whether this was successful or not, but in the meantime, I deal with fatigue, the major side effect of both the treatment and the radiation.
My dad fell in early June and broke his hip and died July 28 after seven weeks of declining health. This was very traumatic for my siblings and me as we struggled with our adult emotions that seemed to fall back into childhood patterns. We had differing opinions on handling my dad’s dying process and my soul is still torn to pieces over what was both said and inferred (and perhaps, things misunderstood by my own dying self). My heart almost skips a beat when I try to process everything that happened in that seven weeks, and at this point in time, I don’t see a way out of the turmoil left behind. I had thought the acceptance of death in an elderly person (My dad was 84-years-old.) would be easier to process, but it’s not and I hurt when I remember he is no longer here on Earth. Grief is a physical anguish that has no physical form.
Our family vacation was piggy-backed onto a trip to see my dad (scheduled before his fall); thus, it was hard to find joy on a beach, knowing my dad was dying. Additionally, my husband ended up having to work many hours on this vacation and a standing memory will be of one waiting for him to finish up so we could leave together to go do something. It wasn’t relaxing.
The day after my dad died, a “positivity guru” posted the following quote on Facebook as the banner for a new group she was starting:
“Whatever you hold in your mind will tend to occur in your life. If you continue to believe as you have always believed, you will continue to act as you have always acted. If you continue to act as you have always acted, you will continue to get what you have always gotten. If you want different results in your life or your work, all you have to do is change your mind.” (Anonymous)
This was in direct reference to cancer and various treatments and I strongly objected to the quotation, using the following words:
“Cancer is not in my mind. It's in every vertebrae, in both sides of my hips, in one hip socket, in my sternum, in several ribs and in my liver. I live a mostly normal, active life with minimal pain, although there have been occasional bad turns. My mind has no bearing on my positive response to treatments. I've been living with this damned disease for three years, six months, one week and two days. I'm doing nothing different than others and claim no control over this disease. Being a "long time survivor" is more a matter of luck and to claim it is due to positive/changed thinking is a grave disservice (and judgement) to those who have already passed away.”
She replied back to me:
“You are wrong in saying I am implying blame for people who died. You are projecting your negativity on me. I prefer to live my life in the light and don't think it is a coincidence that in my case, every "evidence-based" doctor was wrong about my survival because they failed to factor in that which they do not understand.” (The “factor in that which they do not understand” was reference to the idea of being positive and surrounding yourself with only positive stories.”)
Later in the conversation, she indicated she was feeling a “barrage of negativity.”
That brings up a current conundrum. Since when is disagreeing with someone a declaration of being negative? Since when did the world decide that we have to live in agreement over everything all the time? Since when does challenging something become a statement of negativity?
This “guru” went on to leave the group where this conversation took place (and I’ve only quoted her words and mine) to post only on her own page and in her own groups. That’s all fine and good, except for what she publicly said about us:
“I quit a fb cancer group yesterday because they were such a negative energy vortex. If theres [sic] one thing cancer has taught me, its [sic] to avoid energy vampires. It breaks my heart because i [sic] really feel that bathing yourself in negativity is the last thing we need to do to heal, and i [sic] just want to hug them. But its [sic] pretty hard to hug piranhas in a feeding frenzy!”
Is that what I am? Am I a piranha in a feeding frenzy simply because I don’t want to stand by and see women with cancer bullied by the “positivity” mantra? I’m an “energy vampire” because I challenge this mindset? Being realistic about this disease and what it does to the human body is being negative?
I really don’t have a major problem with someone believing that positivity can change their outcome. However, I do have a problem when that same someone starts preaching it with the same fervor as a religious evangelist that it is the appropriate way in which to live with cancer. Living positively can most definitely help you get through your days, but it won’t do anything to change the outcome of cancer.
I was saddened to read of the death of another young woman, only age 45, who died of metastatic breast cancer. She was also determined to live the positivity mantra. She was convinced that her embrace of both alternative concepts and conventional medical treatments would make a difference in the outcome of her life with metastatic breast cancer, but unfortunately, she is not one of the fortunate 22% who live five years following a mets diagnosis. She lived 42 months with the disease. She lived fully and she lived fully on her terms … but she was wrong in believing that positive thinking would extend her life to the decades that she wanted. She, too, accused those who acknowledge the reality of death due to metastatic breast cancer as being negative, and to use her words, we are “storm chasers instead of cure chasers.”
Fast forward to National Dog Day. This made up day falls on August 26 and Facebook was filled with pictures of beloved pets. Kind of fun and cute. While I’m more of a cat person, I can appreciate a furry family member of any kind.
But then “pink” had to ruin it all. Susan G. Komen (the organization I seldom mention anymore) had the gall to post a photo of dogs wearing pink bras filled with pink balloons, using the following tagline: “The dog days of summer are over! Now let’s talk about how cute these dogs are, showing their support for breast cancer awareness! #NationalDogDay”
Seriously? I mean, really? I am baffled at the joy and delight people get over pinkifying a disease that kills, simply because the disease starts in the sexy breasts.
The metastatic breast cancer community has gotten to where we tend to ignore Komen and its oblivion and its obsession with pink feel-good shenanigans. However, this hit a raw nerve and once we heard about it, we made our voices heard in the comments. Our anger and disgust was quite obvious.
The responses to our comments started to come in … “quit being so dam [sic] bitter” … “I'm a huge supporter of breast cancer awareness” … “This is cute, for me no matter what is in the picture. If it helps to draw any kind of attention to the awareness of breast cancer. I support breast cancer awareness no matter what.” … “Spend less energy on being negative and more on trying to live each day to its fullest.” …
Did you see that? “Spend less energy on being negative and more on trying to live each day to its fullest.”
Do you know how hard it is to live each day to the fullest, knowing that every single day, 110 people in the United States alone take their final breath as a result of this disease? Their “living to the fullest” means dying.
I’m supposed to laugh over that? Or, be “positive?” Or, stop being so “dam bitter?” Or, chuckle over dogs in balloon stuffed bras? Or, look the other way when “awareness” becomes a sex-related game for all to giggle over?
It’s too late for my mother who died of metastatic breast cancer at age 52. It’s too late for me, diagnosed at age 48, still living at age 52, but living with the knowledge that I’m actively dying. I DO live each day to the fullest and I don’t need anyone telling me that challenging injustice is spending “negative energy.”
My daughter is 15-years-old. It’s not too late for her. The cycle needs to be broken now. I have no desire for her to face this disease when she is 52.
When I was first diagnosed with breast cancer, I said I didn’t want to be a voice of breast cancer. I unwillingly became an advocate when diagnosed with mets. I do wonder if I make a difference, but if the only difference I make is in the life of my daughter, then it is quite enough. She is the reason I keep shouting into the sea of pink, hoping for change.
Last night, I held hands and cried with a woman in my local metastatic breast cancer support group. She has decided to stop chemotherapy treatments and hopes to be in some immunotherapy clinical trials that are less toxic. She has extensive mets, including the rare metastatic occurrence in her bone marrow. She, too, has a 15-year-old daughter and we wept, not only for ourselves, but for our daughters. When we say we "fight," we have them as huge reasons not to give up, but also as huge reasons not to pursue treatments that will only extend life in a miserable way.
Every time I turn around, pink is flashing in my face, hiding the river of tears that flow each day as people mourn their loved ones. The alternate reality of breast cancer is everywhere. This is what I saw as I drove out of my neighborhood today.