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.
2020 Patient Advocate in Training for Living Beyond Breast Cancer’s Hear My Voice program
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 wreckless asshole driving a weapon more painful than a shotgun, their mother was struck down by a car. As I drove by the accident that cold April night, I knew it was her. I knew her 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 to happen to any living thing. I could see six glowing eyes staring out from the shadows in the brush. Tears came to my eyes blurring my vision, not allowing me to immediately take in what I’d seen in that 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 huddled bodies remain compressed in the leaves.
How can I help myself. I should shoo them away or protect our flowers by encircling the trunks tender shoots with chicken wire cages. But somehow I feel responsible for the deer and looking out for them since they lost their mother to human error. She was as large as she was beautiful. She was not old – I could see this was probably her first litter they way she coddled them and nosed them towards the right food.
After she died I did some research to see if they needed additional 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; nature takes care of her own. During the COVID19 virus so many things have come 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:
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 firstname.lastname@example.org. 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.