Showing posts with label language around cancer. Show all posts
Showing posts with label language around cancer. Show all posts

Sunday, September 23, 2018

Awareness Time!

Dear Ones,

I am part of a new community this year, one that none of us wanted to join. The metastatic breast cancer community. 
never in october

While I am new there, those here who have known me for awhile are probably aware that I start bristling as October approaches. All the shades of pink are my favorite colors, and I only get to enjoy them 11 months of the year.  

My pink is about to disappear for Pinktober. I will not support the pinksploitation of breast cancer. 

While I know very few in this new community, I recently found joy reading a post encouraging us to note all the ridiculous ways pink is abused in during October. The general reaction was angry, frustrated, disgusted, and unhappy. I’ve found my people! (on this subject at least:)

It’s pretty telling that that metastatic breast cancer community (the people who will probably die of breast cancer) are so unhappy about these campaigns. They feel as pummeled, exploited, and targeted as I. Our diagnosis is being used for fear-mongering and profit. 

Pink Abuse
I ask you, instead of buying pink, to donate (see below) to organizations that actually spend money on research that will save lives. The only breast cancer that kills is metastatic breast cancer - if you find yourself being hounded by the pink, ask! How much is going to research? What research and how is it going to save lives? Money going towards “awareness” is not helping anyone. 

It disgusts me that many of the pink and beribboned items don’t even raise money, or if they do, it is a tiny percentage of sales or a small set amount. Businesses use October to increase sales and look like they care. Please don’t fall for it. 

I get that many people love those who have had or are experiencing breast cancer. I get that they (you) want to do something to help and show support. I know that many people, including those who are diagnosed with stage 1-2-3 find happiness and support in the pink. Do you. 

I simply ask you do you with awareness of what the pink is actually for and how it impacts some of us who are livings with metastatic disease. 

Love,

~Amelia


A suggestion of a place to donate - Metavivor.org - here is there statement about research: 
In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for "pink" does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.

Thursday, August 16, 2018

Carrot Juice and Untangling Self-Responsibility


Carrots that have grown intertwined.

The noise that juicer made was enough to wake the neighbors, and carrots came in 50lb. bags, all to satisfy Mike’s desires to make the best possible choices for his health.  Juicing was one of many paths he followed as he read Prevention magazine, bought supplements, followed eating plans and diets, turned slightly orange, attended EST* Seminars, and listened to the gurus of the 1970’s wellness cults.


Some of this was certainly focused on weight loss, and that he did, over and over and over. Diving into that is fodder for another time. Today what I want to play with is the concept of our personal responsibility towards our health, and how I have stepped away from the direct cause and effect model that sells so many dang worthless books.


Back in the 70’s Mike was lead to believe that he was personally responsible for making the right choices, and he followed the rules, so many of them. Forty years later, as I share my diagnosis, I heard from someone talking about a book that describes a plant based diet. They have been following it roughly for many years and remain healthy and “have never missed a day of work.” Others have offered medical advice straight off of Facebook, Oprah, or the local news. So often there is an “expert” telling us how to eat, what supplements to take, or some other strict prescription of behavior that if only you follow it correctly will make you a new, wonderful, sexy, healthy person. Have you gotten caught by any of these promises?


The dark side is that I see clients and friends berating themselves for eating sugar, or not eating enough veggies, or being too stressed from taking care of kids and parents while dealing with an auto-immune disease. People who have come to believe that any “wrong” move could spell disease. (No, I won’t spell it dis-ease dammit.) People who are convinced that making healthy choices is a moral imperative.


Mike Toombs, 1976
Mike died in 1978 of pancreatic cancer, by the time he was diagnosed it had metastasized to his lungs and liver. Many of the get well cards he received during the very short month between diagnosis and his death were from EST friends who encouraged him to think differently and be different, to “get over it.” They we telling him that he could think, live, and eat his way out of pancreatic cancer. To be frank, miracles aside, that was bullshit, the man was actively dying from a cancer that kills 80% within a year.


With such an extreme example, it is easy to see how off the well-meaning advice was. How much more compassionate it would have been for those friends to connect and come sit with him. They could have prayed for his comfort and ease, or simply sent flowers or a differently loving card.


Mike was my father, I was 16 when he died on May 11, 1978. 

Mike and daughter Amelia, 1963
Clearly, I grew up steeped in this belief system, I was told over and over how I had the power to transform and change my life. This belief fit well with the Yankee sensibilities of my ancestors, and aligned with the so common self-realization, "by the bootstraps" narrative that ignores gender, genetics, history, race, ability, sexual orientation, socio-economics, religion, and more. Yet it was the truth as far as I knew.

I had attended EST seminars at 15, so I also knew I needed to focus on being here now, and If only I made all the right choices, I would find success in all aspects of life, love, and career, while my body would be healthy, slim, and fit. As I moved into adulthood, I was attracted to many of these same messages from the Human Potential Movement and read lots of personal growth, health, and healing books. 


I don’t question or regret any of this. This is a small peek into my life and these experiences have informed me. Because I have such a long and rich history with it, I have had a chance to consider how it is working. Some things work really well, a lot of others, not so much.


These days, I am acutely aware that some with a similar background would find the cancer now wandering in my bones to be something that I have brought on myself. Now, people are polite, I might not hear that directly, I do know that it is considered. Well… she could have lost that weight, you know, cancer and weight. Or maybe if she took these supplements… or perhaps her emotional life, or anger, or sadness, or fill in the blank… Perhaps if I was more present or conscious, I would not be having this experience. 
 

You know what? I think that is bull - all this blame and fault finding with expectations of perfect health. All humans have value, and all are entitled to live their best life. Not everyone is guaranteed health which is not a personal gift or failing. Perfect health, perfect life, and death in our sleep at a ripe old age is not real. Whose life works this way?  


What does work for me, is the knowledge and experience that I have options around how I respond to life’s circumstances. How I respond will often change my experience. This is where so much of the ideas around positive thinking really do matter. In this moment, I can watch the rain coming down and enjoy the sounds and softness. Or I can rail against the never ending rain and be mad. This is my lane, this is my responsibility.


Beyond that much of our lives is actually beyond our control.  Our health, our experiences, the people and places that influence us can almost seem random. Why does one coal miner develop black lung when another who worked side by side for 20 years does not? Why does this college campus feel right to my daughter when a dozen similar ones didn’t? Why did your eyes meet a stranger’s that day, the stranger who is now your spouse?


The best explanation I am aware of is called Prarabdha Karma. This is not the basic cause and effect stuff. This is about the lifetimes of our soul journeys, it is about living as ourselves in these bodies and having the chance to learn and experience many different aspects of life. I personally believe I was a part of making some of these choices before I arrived. I am also completely ok with the thought that the divine has set things up for me.


When you look around at the billions of us, even those who are living similar lives will often have different challenges, different joys, and vastly different experiences. How does that all happen? Prarabdha Karma.

Which seems like a conundrum.
Can I change anything? Yes.
Do I have the ability to affect my world? Yes.
What control is there? Lots. Especially in my choice of response and willingness to experience what is showing up.  In any given moment, I have some level of control to choose my response.  

One piece of truth I have carried with me for over 40 years is knowing that I have made the best possible choices in the moment. That does not mean I have not made mistakes or behaved badly, it is simply a surrender to the understanding that I did my best in that moment. I also trust the same for everyone else.


Sitting here today, I am not questioning that I came to be living with metastatic breast cancer. I continue to notice and let go of the healthism and judgment that I find sneaking in, and find it helpful to discern whose voice is speaking those old ideas. (I talk back.) My body is what has brought to and carried me through this lifetime, and my prayer is for the opportunity continue that life for quite some time. 


While I am here, I may drink some carrot juice, or a milkshake, read medical studies, even incorporate new information, movement, rest, or meditation into my days. Why will I? Because it feels right, because my body or soul is asking for it. I will make those choices through presence and attention. I find such choices more supportive and congruent to living the life I desire. The life that I understand is less about controlling and doing it right, and far more about allowing, accepting, connecting, and rejoicing.


*est or EST – Erhard Seminar Trainings which "brought to the forefront the ideas of transformation, personal responsibility, accountability, and possibility"

Friday, July 27, 2018

For My Birthday, I'm Taking Care of Myself

Dear Ones,

Seven years ago for my 50th birthday, I was prepping for a second breast cancer surgery, an axcillary dissection.

Today, for my 57th I am sharing widely so that I feel comfortable getting back to my writing and blog.


I am one of the about 30% who experience a return of breast cancer. It’s been quite a long road of discovery, and I am experiencing metastatic breast cancer, it is “diffuse and widespread” in my bones.


That’s the bad news. The good news is that there are a lot of effective treatment options, so don’t kill me off quite yet. Many live for many years, as is my intent.


It’s important to me to note some specifics around language, this may be new to you, I ask for your respect. I see this as a challenge and an opportunity.  What I hate is not cancer it is the way we talk about it and our bodies. My goal is to expand the love for my body and embrace its vast strength and health. No to “battles.” This is my living experience, do not call me a “survivor” - what does that say about all of our beloveds who have died? There’s more about this on this blog.


So, here I am on my birthday, planning to bake a gluten free knock off of Main and Market’s strawberry shortcake and getting ready to take Sarah to the dentist.


All is well at work, what amazing people Alchemy’s therapists are!
I’m seeing a limited number of clients and all continues to move smoothly there. Thank goodness!


I will write more about the diagnosis/discovery process. Short story, this presented really strangely and was intertwined with gall bladder, a tooth extraction, random pain, and a strange numbness that nobody could figure out. By the time I had a real diagnosis I was pretty miserable, and in a lot of pain. We then had to wait for additional pathology lab results to start treatment.

I’m feeling better about six weeks into treatment. Less pain, mostly manageable with ibuprofen, and a host of drug side effects. The treatment is a Aromatase Inhibitor that knocks down the estrogen in my system (yay- Menopause3) along with a newer drug that prevents the cancer cells from finding a back door to nutrients when the estrogen is cut off. This drug is chemo-like in that it tanks my immune system and creates those side effects.


So far it is manageable and things are improving. There is a large selection of options my oncologist (who I love!!!) has for treatment and my NP, acupuncturist and other therapists are supporting the health of my whole body. The reality is that this is stage 4 cancer and care is all essentially palliative, however there is a lot of life in me, so here we go - I will celebrate birthdays.

My blog is linked and I have so much more to talk about as spirit moves me. If you are interested, please read along.


What else can you offer? Love and support, prayers and good energy. Lunch perhaps if you’re local. Let Sarah have her privacy, she is doing great and is handling it well. If you are an Alchemy client, this is not a topic for conversation at the office or in session. Period. Big boundary.


Final Soapbox:
From here, notice how much money goes to “pink” and “awareness.” A tiny fraction goes into research for metastatic breast cancer to find treatments and cures. When October shows up, ask where the pink money is going. Send your funds to research that are actually working towards life not fear.


Soapbox Two: Please don’t send me links about the latest hokey diet cure, herb, oil, or articles about "what the doctors aren’t telling me." Actually, my docs are on it. I trust them.


Even more, I trust my body, spirit, and my path in this life. I will focus on my health, my beloved and amazing daughter, family and friends, Alchemy, and living my highest and best.


Love,
Amelia