Please give me a thumbs up for my patient… | Facebook

Please give me a thumbs up for my patient advocacy 2020 hear my voice program and learn a lot about living with metastatic breast cancer, too at Lbbc.org
— Read on m.facebook.com/story.php

Defined by Walls – Removed by Advocacy

I hung the bird feeders where they’re safely out of the way of what dangers may lie in wait for a snack, just below. They become a tease to the enthusiastic ears and eyes of their natural enemies watching…listening.

But I’m not familiar with their language- how would I have known the sounds of foxes: how they seem to giggle like bandits on a mission or laugh at an inside joke to which none but they know the punch line. Wild turkeys, deer, geese, several species of owls, bats, wolves, mountain lions, raccoons, wild hares and rabbits, and skunks, skulk across a the acreage they own and we borrow from them. They hide from human eyes in the forested tall oaks, pines, punctuated with buttercups, black eyed Susan’s, and other newly blossomed wildflowers. It’s wooded and dense with untamed vegetation. My cat’s chatoyant turquoise eyes sparkle as he can see what I cannot. Birds in trees camouflaged in their nests hidden in the branches: he can see them nestled there in the trunks and branches. To me they blend into green and brown.

My eyesight strains to read books or even the warnings on the dense packages of chemotherapy. But damn, he can see more details than the outlines and the colors of the birds against the newly born foliage. They just appear magically as if hatched independent and fully grown.

From his perspective they look like the wild prey they are, food to pounce on as he’s braced and ready. He focuses out the window ready for one to land just close enough. But he can’t get through the glass. And I can let him out because he would make a nice lunch or dinner for many of the wild beasts that see him as he sees those birds.

Today my morning started at 5 a.m. I was treated to two mother turkeys and six turkey chicks. Six little chicks are relative to our word small. These are rather large birds and yet they are cute and very interesting creatures to watch.

These bluebirds are very aggressive. They seem angry as they kick the feed out of the birdhouse. After this bird style vandalism they sit in the feeder as though they were taking a bath in it. But this is good for the turkeys because the little babies are pecking up the seed all over my porch. They did an excellent job cleaning up and I almost wanted to give them all a dollar for allowance or to start their college fund.

But as we all know turkeys are rather small brained. Certainly not intelligent enough to make them the appropriate selection for the United States National bird, which Benjamin Franklin thought should be the turkey. It turned out to be the bald eagle was a far subtly better choice. Although these days with the size of the bird brain relative to the size of the ones inside of the White House I think that the turkey would’ve been far more appropriate choice for this administration in particular.

All kidding aside I love watching the birds here. I also love watching the deer. The orphans are growing up on their own. As sad as I feel when I see them, nature takes care of it’s own. The three deer siblings consist of two bucks as a doe. The furry antlered males act very aggressively. They come up to the door of the house and look right at me as though they’re thinking I’m pathetic. Recently, one brazenly came right into the garage. He scared the hell out of my husband. They’ve grown quite a bit since then and neither buck are as reckless to coming into the house anymore – they’re maturing. Staying outdoors, they revel in eating all of my flowers. I can’t help but not want to shoe them away or cage the flowers from them. But alas, watching them it’s a visual trap I’ve set for them to find a way to come visit once the flowers start blooming again. I count – one, two, three. Sighing with relief they’re all present and accounted.

Orphaned by a wreck less asshole driving a weapon more painful than a shotgun, their mother was struck down by a car. As I drove by that cold April night, I knew it was her. I knew the three babies were somewhere close by, and hoped they’d not witnessed such violence and the slow painful death of their mother – it’s somehow akin to losing a patent to cancer in the wild animal kingdom – senseless, gut tearing, anger producing, preventable. Unfortunately they weren’t spared the sight as I wonder how god could allow violent acts of pain on anything or anyone. I could see six eyes staring out from behind the bushes. Tears came to my own eyes and I couldn’t possibly take in what I just saw in the immediate moment.

They’ve grown quite a bit since then and are not as aggressive in coming to the house. They stays outside and bed down every night at the far end of the driveway out of sight although in the morning the impression of their three huddled bodies remain in the leaves.

How can I help myself but not want to shoo them away or protect the flowers with cage. But somehow I feel responsible for them and looking out for the mother they lost. She was as large as she was beautiful. She was not that old – I could see this was probably her first litter they way she coddled them and nosed them to and away from appropriate food. After she died I did some research to see if they needed feeding or some other help. We were willing to take over any necessary mothering for her as they got old enough to care for themselves. They didn’t and won’t need a thing. In fact I could kill them by helping them. I just watch out for them and yell at cars going too fast down the road on which her life was stolen.

If I reflect on the experiences written here I realize how much seems to be about mothers and children. In someway mother nature takes care of her children. During the COVID19 virus so many things came back into the natural state of the blue sky, the vegetation reborn, and hidden within it all of the animals just months ago nowhere in sight. Humans and our habits have taken over or destroyed most of their habitats.

But it’s really about protection, about advocating for people that you love, for things that you love, and for experiences in this life. Experiences may seem a bit out of place in this context but let me explain.

There’s the experience of reading this blog and finding the words that perhaps you couldn’t to express something that’s going on with you and your experience in your world with your cancer. There’s the experience of going to a doctor and wanting to know what questions to ask. There’s the experience of finding a website where you might find the information that you’re looking for. But it’s really about protection. It’s really about advocating for people that you love, for things that you love, and for experiences.

Experiences and advocacy don’t really seem to go together do they? But in fact they do. There’s the experience of reading this blog with words that perhaps you don’t have at your own fingertips to express something that’s going on with you and your experience in your world with your cancer. There’s the experience of going to a doctor and wanting to know what questions to ask. There’s the experience of finding a website where you might find the information that you’re looking for. And so when I’ve been super busy with these days is I have been chosen to become a patient advocate for the Hear My Voice Program through Living Beyond Breast Cancer.

We all have a purpose. Our lives and our legacies are built on a foundation of purpose. It could be as simple as getting up on time and arriving on time to an appointment. There’s purpose in all we do great and small. But nothing is insignificant as it effects others, even people we may not even know – the butterfly effect for instance and the ever reaching meaning of a single thoughtful glance.

Yet its not unreasonable to say that my purpose is based on my experience. The last five years of my experience having metastatic cancer have made it incumbent upon me to become an advocate. I was chosen to be one of of 22 others for the class of 2020 to learn to be patient advocate for Living Beyond Breast Cancer’ Hear My Voice Program. I am very proud and very humbled. Perhaps I began this post with my animal cohorts and their babies so I can update their progress along with mine. In so many ways this experience in my life is so new its taking a front seat to many other serious things. I have a friend in my group as well. I was hoping to hug her in person and get to know these wonderful women face to face. But it’s been robbed from us – I know we will meet but not yet.

Soon. God I hope soon. I wanted that camaraderie as much as anything else.Do you know how it is running into someone else with cancer. No matter the type of cancer no matter how long they’ve had it your conversation goes directly towards it it’s almost as if you can’t help it you see someone like yourself and you feel that there’s no need to explain there’s a short hand already in place and you have to take advantage of it immediately it’s so important. But we will get that I know that we will. It’s just gonna take a little more time. So please stay and come back and be updated I can’t wait to give you a better part of myself about her part that I’ve been able to give you through only the blog.

It’s going to be a wild ride as we are the first and only class to be virtual in all of our learning and we’ve utilized all of the resources so far that are available to us to make it as personal as possible but I will tell you this it has not been easy. I don’t think it’s been easy for the people teaching, for the mentors, or for the students. But COVID-19 has gotten in the way of that true personal touch that feeling of the other person that hug that we were looking forward to so much. But we will get there I have faith. But onto the more meaty stuff. Let me tell you where you can find all of this wonderful information.

Living Beyond Breast Cancer can be found online at:

https://www.lbbc.org

They also have a staffed helpline at

https://www.lbbc.org/helpline

And you can find them on Twitter at @livingbeyondBC as well as Facebook, Instagram and Pinterest. I encourage you to take advantage of all they’ve got to offer and please reach out to me right here in the comment section of this blog or you can also send me an email to my personal address at iakaminsky@me.com. Please mark it with a flash or a subject of urgent and personal and I will make sure and find it. I’m happy to help in anyway that I possibly can.

LBBC generally focuses on people who were diagnosed at a younger age (under 40) with breast cancer and also people existing with the life sentence that is metastatic breast cancer. However no one is excluded who has breast cancer. You’re welcome whomever you are at whatever stage or even prior to a diagnosis.

And I have not only to advocate for myself. I know it’s incumbent upon me to use my knowledge and that “rare patient voice” as it’s called of the approximately 20% of those of us who make it alive after five years post MBC diagnosis. That’s where the juggling act comes in. It’s unfortunate but one that I’m learning to do currently I’m juggling with two ball Falls and I hope to get the three balls in the next month here. By then I should be spinning plates for the next several months. But to be honest it’s a hard lesson to learn.

I’m trying to fit it into my life just at a point where I’ve been the busiest I think I’ve been since I’ve been diagnosed.

What’s Changed in Five Years with Metastatic Breast Cancer

Warning – a philosophical stream of breast cancer consciousness ahead. And some good news – after three years of applications I made it to the Living Beyond Breast Cancer’s Hear My Voice program and I’ll train in April to evoke the role of Patient Advocate. Some things do change for the better.

But some days nothing at all seems to work. My body just cannot cooperate. Desperate and jubilant, isolated and surrounded, frightened and soothed, all on the roller coaster hoping the slow climb up will take forever and not send me screaming on a steep downslope to a dead stop. After five years I feel like I am sitting in a bathtub full of ice cubes when I think about having cancer. In a way it’s easier saying it and engaging in discussions about it because conversations naturally end.

My mind loses track of time when I think about things. One of the things I think about is Cancer and the role of the disease, which has taken over as a full time job. I didn’t hire it. But this new employee of the brand of me I used to be changed. In some ways for the best yet not for the better.

I feel like I used to be Coca-Cola then some idiots in corporate decided there needed to be a new me, so like New Coke (for those of you reading who are too young to remember it was a MASSIVE failure and still the brunt of many jokes). Like New Coke, I lost the support of my friends and relatives one after the other, yet finding love in the strangest and most unexpected people, and it’s all a mess.

I hope for the best, demand the care I need and want, I cry sometimes all alone and sometimes I cry at night when I cannot sleep out of frustration. I cry from pain that drugs can’t touch anymore because of my fast metabolism and built up tolerance.

Sleep requirements have changed, too, although my body always fought sleep so I’ve never slept well. I couldn’t wait to get up in the morning and see what would happen – all curiosity and annoyance to my mother’s chagrin when I was a little girl. Now I can’t get to sleep – and I’ve tried everything. Guided imagery. Meditation. Everything, but my mind and body aren’t cooperating. Now I’d make the worst employee being in pain and going to constant doctors appointments and being perpetually late.

It’s all so broken. But in breaking things down, I grow. I will grow something beautiful from my wreckage. It’s debatable what beautiful new things will arise from my broken life. I don’t even know if I’ll be living next year. But I know I’ve survived as well as I can, unselfishly and without too many apologies necessary. I wish I could talk to some people who meant so much to me. Explain. Yet no one needs to explain themselves. We hope apologies will come to people from a place of humble strength. Mostly I’ve come to understand apologies connote weakness to most people.

I feel the Psithurism – the sound of the wind through the trees. That’s why we moved away from the city – away from the crash of cars on the shorelines of garage doors, away from the rage emitted by the people you meet by “accident” – accidents don’t happen on purpose so why get enraged?
It’s your blood boiling. Cars usually can be fixed if not catastrophic. So why burden your soul with objects. Granted one must get from here to there. But it can always wait. Oh there will be those who hit you purposely, but it’s because they’re in so much need they chose you to get the correct to their directions to their destination.

One shouldn’t leave the scene of any accident without apologizing even if not at fault. You arrived there, too. The attention of the driver of the car at fault wasn’t on you. However, don’t let anyone curse you for being in the way or driving slower than they’d have liked.

Have you ever noticed how drivers who race to get in front of you are always at the sand red traffic light three blocks away? This is the sound of the wind through the trees. Accidentally meeting on platforms of unintended consequences. We are polarized by them, yet also congealed into a single warring faction against one another. Why when we know something is untrue can we stand around and shake our heads, “yes” in unity around a false value. It’s not valuable to anyone. Can you hear the grumbling of the loneliest people in the world? The people who seem to be the most popular have no idea who really loves them. Give them a test and ask if they’re loved – and can they really say the sycophants around them define love? I haven’t the time to pray for the preyers.

I may on that day experience ellipsism – that sense of sadness one might experience when realizing your life’s term will not include the future. And as I hear the psithurism, the rustle of the leaves in the trees, or smell the petrichor on the highway, the scent of oil coming up from the road after the rain that day, I realize nothing accidentally happens.

Getting in the car that morning, understanding things would change, my chemotherapy, my appointment structure from in person to telemedicine, my driving habits, my nutrition, my entirety of existence, that I’d fall not far and get up again.
Here I am five years gone maybe five to go of course if I am to continue to be so lucky, and see the true resilience of myself and this planet. Neither of us have long to go so I inhale the oil, feel the breeze and think of how long I might sit waiting again to be late for appointments and how it all really doesn’t matter to me in the long run because there’s no long run. It’s been a short one so far, and I feel some sadness that this may be my very last accident, like 2020 may have been my last new year’s eve.

Or maybe not. Hope. That naughty word I love to taste as it delicately rolls through my lips like a kiss or a whistle. Hope became an endangered emotion like a species of animal. The fragile ecosystem, the human mind, may be the last place I see but isn’t that true for all of us?

.