Living Beyond Breast Cancer – What’s in it for you?

www.lbbc.org/sites/default/files/LBBC003_Org_Bro_8x8_Optimized.pdf

Here’s a PDF brochure of the services that LBBC.org provides – you can find EVIDENCE-based, expert vetted information so you don’t have to go searching all over the web or wonder what Google searches will turn up for you today. If you’re looking for clinical trials, an ear to listen, advice you can use now, including difficult to discuss topics like sexuality and breast cancer, and much more. LBBC tends to focus on us with metastatic breast cancer and those diagnosed at a young age – however, the information is for anyone diagnosed with breast cancer at any stage and any age. I am happy to be a part of this organization and I hope you’ll find the same caring support and valuable data that I’ve come to rely on, year after year.

I’m also pleased to say that 86% of the funds raised by and for LBBC go directly to their programs. That’s huge. Not many organizations can run that close to the razor’s edge financially and deliver the quality of services. And you won’t find a bunch of pink washed rah rah crap either, there’s real stories by real people and their voices are like yours from all walks of life — all races, stages, socioeconomic groups, and son on. No one is left out.

Yep, I’m slightly biased, but the bias comes from experience and having been all over the web looking for what LBBC provides.

I was well enough to attend the conference in Philadelphia this year and was so very much looking forward to meeting some of the women who I call my community of support, and only know virtually through our blogs and primarily through twitter – but alas, COVID, you suck, and took my first opportunity in five years since diagnosis and flushed the in-person ever important hugs and talks away for a while. But LBBC put together an amazing virtual conference and you can watch and listen to the program on their site, at LBBC.org. And I hope there’s next year, too.

For a good time and a good amount of information from people you probably know – patients – that voice that rarely gets heard at conferences – you’ll find something useful. I can bet my life on it and my life is extraordinarily valuable the longer I live with MBC.

Hey, enough yakking! I’ll let you read the brochure at the top of the post and follow the links included.

Hugs and love.

Ilene

2020 Patient Advocate in Training for Living Beyond Breast Cancer’s Hear My Voice program

(So proud!)

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.

Oh, It’s Been One of Those Weeks

Aside from starting my training for LBBC’s HMV or hear my voice patient advocacy program, I’ve also literally gone crazy around the house. We’ve been doing all kinds of projects that seem to be taking way too long. We have had a people parade for Craig’s birthday including my two stepsons over the course of a week. I swear I just recalled it’s Saturday night and still not posted to my labor of love – my blog.

Well, there was an attempt to write a post so this is not entirely true. The new editors is giving me a stomach ache. I attempted to post a completely written and edited piece and went to quickly search the web to grab a link and the post vanished. Frustrating. But what’s the point of crying over spilled words. This transpired while I was trying to beat the 3 am or so deadline before Marie Ennis O’Connor does her weekly breast cancer blog roundup in which I like to get my posts included. First, I use it to deliver a post a week ant being included is an honor and a reward. I am slightly Pavlovian what can I say. It also bullhorns my words to people who may not have read it, which hopefully improves any impact it may on breast cancer awareness.

But this hasn’t been an easy week. I’m finding it incredibly difficult to let my heart open up at all. But doing nothing isn’t on the metastatic agenda. Though trying to heal in every way requires rest. And that basically requires doing nothing. That’s just not something that makes me comfortable. Doing nothing or not thinking about anything. Except when I meditate. There’s a witness meditation I recommend that helps to push thoughts aside and remind the meditator that they’re not their thoughts and are not defined by them. It also requires a great deal of concentration.

Drawing on the creative mind Learning a new trick I am drawing on a pretty regular basis which helps to clear my mind. Since I was very young I’ve written poetry. Those two creative endeavors seem like cheating since I’ve started the blog, but in many ways each is more work. My drawing has only recently begun to take shape and poetry requires an eloquence and a frugality of words. Not all poems need many rounds of editing although most do. Some of the poems just flow onto the page – the gifts from the synchronistic universal mind delivered right into my own and written with ease. Some poems have a wider breadth of ideas that take time, take many many edits, and some may even take years. Then there are good ideas that don’t make good poetry and never turn out quite right. But we wait for those magic moments. I think all writers do no matter what format they choose.

What’s really bothering me this week is that with all the things going on in this insane world, those people who are senseless and incredibly violent. They’re the ones who use ignorant dialectics and who take their positions in this world so seriously that they use their hands their minds as their weapons to harm others not to protect them as they were sworn to do. I’m not going to string together a long commentary on racism. Racism is ignorance. Racism is something that is taught. Racism is something that I deplore. I could go on for pages but it won’t help. Just know that it hurts and I find it hard to write on anything else. I loved this definition of dialectics from Wikipedia because it fully describes what my point is getting at:

Dialectic or dialectics (Greek: διαλεκτική, dialektikḗ; related to dialogue), also known as the dialectical method, is at base a discourse between two or more people holding different points of view about a subject but wishing to establish the truth through reasoned methods of argumentation. Dialectic resembles debate, but the concept excludes subjective elements such as emotional appeal and the modern pejorative sense of rhetoric.[1][2] Dialectic may thus be contrasted with both the eristic, which refers to argument that aims to successfully dispute another’s argument (rather than searching for truth), or the didactic method, wherein one side of the conversation teaches the other. Dialectic is alternatively known as minor logic, as opposed to major logic or critique. – Wikipedia

But it’s hard to forgive those using power as a kind of moral viagra. I try not to look at the news more than three or four times a week or I get really angry and my anger tends to make my language snarky. These are seriously strange times beyond my vocabulary and my gut just says “fuck.”

Not very eloquent but it’s the only word that’s a noun, verb, exclamation, adjective, and proper noun all in one four letter word. The rest aren’t strong enough. Fuck it. I say fuck you to the murderers in Minnesota who take life and amid all this tragedy add racially fueled killing to more of the ugly side of our species ability to create situations and think about consequences.

The consequences are as far reaching as the illness that caused the curfews that caused the tensions, caused the Anonymous videos to vanish, that caused a 10 minute hide out by an unglued insane global ruler, that caused us to watch a man murdered for his race by those sworn to protect and serve not hate and kill because they’re drunk on power, that caused more fear in a world verging on economic collapse while everyone closed their eyes as the crooked at the top begin taking the pie away and sending us all to either riot or demonstrate, causing us to lay face down so we cannot see what’s crushing our necks so we cannot breathe.

There’s a very ugly parallel between the murder of a man and the the killing of thousands by a virus most likely unleashed by a lack of social control. The man was already sick with a congenital heart condition so he was already in a situation that put his life in danger. That’s true for Covid and those with weak immune systems. There’s no cure for the men who killed him. No riot, no peaceful demonstrations can change his death. No time and no medicine can bring back the dead. No one was really watching the people meant to protect us who killed a man who did not resist arrest. There’s objective video proof. There’s proof that the powers who pose as protectors knew about the virus well before it became news and before elderly people died alone without anyone to help them to the light of the spirit world. And if there is one I pray they’re given special treatment as the man who was killed in cold blood by those who were supposed to protect him. We won’t know the true severity of the outcomes of either event for years to come, and we won’t really ever know the truth.

Racism is real and it’s shocking and it’s plain stupid. But remember the average IQ is 100 – there’s 49% of the population on the short bus. And then there’s are those who are smart enough to know better. And then there are victims dying on a planet covered with clouds of sadness crying polluted tears. We can trust no one in power to help. We can believe nothing broadcast to us because it’s all like wartime propaganda – and nothing seems quite right. There’s 5G towers going up and fuck if I know if it’ll help deliver messages of hatred and open our immunity to Covid? Do you hand out hope amid a global economic depression of proportions we’ve not seen in history -ever?

Seriously I know you are thinking, “she’s finally lost it, get out the straight jacket.” I feel like going to sleep on the sofa. While editing my post the commentary of my beloved can’t have been much worse. It’s 5:30 am. Having been writing since after dinner and not moved since, he says, “I’m upset with you.” Why? He’s not saying. I can’t think beyond the weight of life and he just can’t fathom my intensity.

What can I control? There’s resilience that metastatic cancer has taught us to reach into our viscera, pull out our strength, and know exactly what to do next. Myself. Lead by example and don’t fall prey to the bullshit yet don’t remain silent out of fear. We’ve faced our mortality already. We’ve nothing to lose. So even if you don’t agree with me it’s perfectly okay. But doing the right thing means deploying a well tuned moral compass and exhibiting love where hate can go metastatic in a heartbeat.

Here’s a poem I have done at least 50 drafts of including a total rewrite on the premise alone. I was going to turn over the one that came out in a moment as it was intended on my part. Those are from god if there’s a god. A gift. A piece of our souls. No, I didn’t give that one away yet to time and to beckon critique. I’m giving you the hard one. The turgidity was painful getting it out. It’s still not quite right but oh so apropos.

Remember I love you all by the way. There’s not enough being shared but a dearth of it to cover and protect every single living creature. I’m sincere – you have someone who loves you as long as I breathe. And life is all you need so live it knowing you are loved.

Victim
Dark blue night wings overhead
Snuffing out the last of the day.
If memory serves,
Against curtains of magenta
Birds with flaming wings
Burned the scene into the scene –
The stripes earned by stones
Over years of echoes
Outside the river banks
Snake the eon twisted canyons
How stubbornly the water flows.
For a life as long as a blink the same Picture on every postcard.
Markers of a trip out west
We lower ourselves and continue to Take frozen photos to describe
By the end of the poem
A couplet of a sunset
Sinks below the canyons, finding us
Buried with sky writers of yesterday.

Let’s go kill this scene off
Erase the canyons from the
Bucket list. I bristle at the very idea And insisting angry I hear myself Echoing across the painted walls –
Kicking a bucket is no better revenge
Of a life well lived.
A container cannot defend itself –
It stores pictures without words.
Believing in emptiness
We never fill up our containers
And rename our dreams to fit
Infinite, empty, and black as ink.

Cat’s Cradle

Pink cheeky girls woke up
Hearing my screams in the dank alleyway.
Just a caterwauling stray, they yawn,
Slipping into their pretty dreams
In between rose covered sheets —
Lining the inside of a restful box.

Curled up like kittens having tea
Painted into black flocked drops
Still life frozen stiff.
Another innocent mother
Wasting her love
Couldn’t know what to do:
Crying deeper than an orphan
With a never ending need
Of a basic meal and the itch unscratched it’s Mottled by parasites.

With her tongue like a steak knife
She cuts the fleas
From their bare coats.
Nearing silence finally in hearing Satisfaction in their innocent mews, Rewarded by the razor sharp claws Ripping, scratching, pushing for more. Without a sound she moves away as
They watch her slowly
Slip and back away. A last sound
Like an old door shutting she closes Herself from their endless hunger.

Finding parts everywhere,
Slashed and scattered, she collects herself
From the pavement glass and stones
Hearts and bones under a red porch.
Food and water sometimes appear
Bowing into the dish and darting
Up for air and reassurance no one’s there.
In a crisis of conscience
One rarely finds relief or the space To eat for food for thought.

I press against a window, yet at night When it’s light inside you see only a Reflection of the night.
Seeing her own green eyes in the glass Afraid of her own image – is that what I am?
Running faster and passing the pink girls who turned in,
Between Egyptian cotton sheets of papyrus,
She never once let a word out again – The litter stole everything
Including her tongue.

They sleep and wait for her,
But wake to find me instead. The frightened babes, bottle fed and unnaturally fat.
It’s true that all of us may never find home
And the coats we wear
Are the coats of the pick pocketed and the poor: all of us victims
Crying for our mothers.