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!)

Resources for coping with COVID-19 | Living Beyond Breast Cancer

COVID-19, also called the coronavirus, has caused stress and uncertainty for people around the world. Many people in our communities are worried about the risks to their health because of underlying conditions, such as a weakened immune system as a side effect of breast cancer treatments. Some are also wondering how to cope with weeks in the home avoiding human contact or going out for necessary appointments, such as treatment.
— Read on www.lbbc.org/news-opinion/resources-coping-covid-19

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?

.