Tell Congress That You Need Your Healthcare

#ProtectOurCare

Politics in the United States are changing every day.  One of the policies under scrutiny is the Affordable Care Act, also known as the ACA and as Obamacare.  The ACA made many strides towards helping cancer patients and survivors obtain and maintain their health insurance coverage.  There is fear that changes made to the ACA (or the repeal of it entirely) will dramatically impede the young adult cancer community in having quality and affordable health insurance.  You have the power to let your voice be heard.  Are you only covered because of the ACA?  Before the ACA removed lifetime caps in coverage, would you have run out of coverage due to cancer treatments?  Were you able to change jobs or take time off of work because of the flexibility the ACA finally allowed people with pre-existing conditions…*cough* cancer *cough.*

Tell your members of congress that you need your healthcare! The NCCS has a tip sheet and a sample script to make it SUPER easy!  Make a call, send a postcard, tell your story.

Your story matters.  Make it heard.

Have A Happy Holidays

Today is our last day of 2016 posting in the Young Adult Voices blog.  2016 has been a very exciting year for Lacuna Loft.  We launched a number of programs, we grew our participant base significantly, we spoke with a number of healthcare providers about the age-appropriate needs of young adult cancer survivors and caregivers, we had 2 different book clubs and 2 sessions of the unspoken ink: young adult cancer creative writing group and 2 creative workshops, many new contributors, and so much more.

2017 holds so much in store.  We’ll have a new creative workshop announced in January and the Young Adult Cancer Hangouts are starting.  We’re growing our programs, growing our support base, and growing our reach.  We are really excited for what is to come.  We’re excited to learn more of your stories, excited to meet more of you in our online programs, and excited to expand Lacuna Loft’s support programs to meet the needs of more and more young adult cancer survivors and caregivers.

From all of us, here at Lacuna Loft, have a very happy holidays.  Stay warm and dry and safe.  Remember that you are valued and that we will miss you until we’re back in January.

Go Vote!

go vote

We had another post scheduled for today…and then it occurred to all of us, here at Lacuna Loft, that we should just tell you to GO VOTE!

If you’re in the US today, go and vote.  Vote for healthcare, vote for peace, vote for radical inclusion of all people into our society, just go VOTE!

We’ll be here when you get back 😉

Tell Your Community About Lacuna Loft

Lacuna Loft

As we start nearing the end of 2016, Lacuna Loft would like to thank you for participating in our programs.

We hope you loved your experience!

Lacuna Loft exists to make programs and support available to you, wherever you are, whenever you want.  To make these programs available to every young adult cancer survivor and caregiver we need your help.  Use the hashtag, #JustLikeMe, to tell your communities what Lacuna Loft means to you.

Let your community know that you deserve age-appropriate support and connection to other young adult cancer survivors and caregivers who understand!  Encourage your community to join our Lacuna Loft Flight Crew, the amazing community of donors who directly supports young adults facing cancer, just like you!

You know, better than anyone, the consequences when one young adult is diagnosed with cancer every eight minutes.  Your future is changed in an instant.  Lacuna Loft offers connection to other young adult cancer survivors, access to emotional support that addresses your age-specific needs, and encouragement from other young adults who understand, all wrapped conveniently in a website, accessible 24/7, with all of our programs offered free of charge.

This is why we need your help.

Lacuna Loft is a community funded charity and financial support keeps our programs running.  Can you tell your community what Lacuna Loft means to you?  Partner with us, as we grow, making sure that no young adult cancer survivor or caregiver faces cancer alone.  Using the hashtag, #JustLikeMe, we emphasize how alike we all are, as young adult cancer survivors and caregivers.

Share on your social channels, let your community know that Lacuna Loft’s programs are important to young adult cancer survivors and caregivers!

Encourage them to donate to Lacuna Loft!

 

You can use some of our Shareable language!
Looking to donate to charity this holiday season? @LacunaLoft offers programs for #yacancer survivors, #JustLikeMe https://cactuscancer.wpengine.com/donateYour donation provides a community for #yacancer survivors, 24/7 @LacunaLoft #JustLikeMe https://cactuscancer.wpengine.com/donate

Your donation provides a community for #yacancer survivors, 24/7 @LacunaLoft #JustLikeMe https://cactuscancer.wpengine.com/donate

P.S.  Looking for some easy, shareable images?  Email info@lacunaloft.org and we can send you some!

Impact Numbers (July 2015 – June 2016)

lacuna loft impact

Without *you* there is no Lacuna Loft.

Today is all about *you*!  Today we spend thanking *you*!  Below, we share some of the impact numbers on the young adult cancer community that *you* made happen.  Lacuna Loft’s first year as a nonprofit has been amazing…all thanks to *you*!

*You* made Lacuna Loft’s impact possible through your donations, your contributions, and your participation.  *You* are making the lives of young adult cancer survivors and caregivers better, more manageable, and less lonely.  *You* are connecting these young adult survivors and caregivers to one another when they really need someone who understands.  *You* are sharing stories, ending isolation, and forming a community where a community has been deeply needed.  *You* are all of the lively and peppy and bold and courageous and loving adjectives that we share each week.

*You* are a rockstar!  Thank *you*!

lacuna loft impact

Our full annual report will go up on our website soon.  We’ll point you to it as soon as it’s there.  Some changes will also be happening on the site so that *your* impact on the young adult cancer world is always available, front and center, for ALL to see.

*Together* we are making this a better world for young adult cancer survivors and caregivers.  Lacuna Loft Impact is *your* impact.

Book Club: Rising Strong, Chapter 2

book club

Welcome to the comments and discussion of Chapter 2: Civilization Stops at the Waterline of the book, Rising Strong by Brené Brown!  Catch up on Chapter 1: The Physics of Vulnerability.

Let’s get started!  Chapter 2!

Mallory:

This chapter focused on the mess in the middle…that part in every story when the internal battles are happening, the solution forms itself, and the really hard work happens.  I can relate to this in so many ways.  My personal struggles with cancer, caregiving, and survivorship, as well as my professional life, have had many a messy middle.  This middle part is where “the protagonist looks for every comfortable way to solve the problem.  By the climax, he learns what it’s really going to take to solve the problem.  This act includes the “lowest of the low.”

This middle is where the second guessing happens, where we internally debate the “right” and “wrong” ways to handle something (or to ignore something).  Brené relates this story process with the process of Rising Strong.  In the Rising Strong process, the middle part is the Rumble.  The part where honesty is a must, where growth is inevitable, and where we learn just a little bit more about this journey of being human.

Stories can be big and small.  They can be the process of our morning, a big change at work, a move across the country.  Big or small, being honest with ourselves and allowing the middle part to happen, not glossing over it hoping for an easy fix or a quick ending, is essential to learning how to Rise Strong.

Thanks for joining us for our Chapter 2: Civilization Stops at the Waterline of Rising Strong!  Join in next Monday for Chapter 3: Owning Our Stories and in the meantime, learn more about the book club commentators!

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  At the end, we’ll have a book club discussion via video chat!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Have A Peppy Weekend

This month is super busy at the Lacuna Loft offices.  How is your Fall starting off?

Here are some peppy weekend links from around the interwebs…

[list type=”like”]
[list_item]make your own Marauder’s Map![/list_item]
[list_item]caring about caring[/list_item]
[list_item]let’s talk about sex[/list_item]
[list_item]a great, cheap kickstarter game[/list_item]
[list_item]learn how Lacuna Loft is unique[/list_item]
[list_item]volunteer with Lacuna Loft![/list_item]
[list_item]interested in teaching a creative workshop at Lacuna Loft? Email us! info@lacunaloft.org[/list_item]
[/list]

Have a peppy weekend Lacuna Lofties!

Book Club: Rising Strong, Chapter 1

young adult cancer book club

Welcome to the comments and discussion of Chapter 1: The Physics of Vulnerability of the book, Rising Strong by Brené Brown!  A big shout out to Random House for donating all of our books this time around!

Let’s get started!  Chapter 1!

Marnie:

Introduction: Truth and Dare
The introduction actually resonated with me before I even made it to the first page of Chapter One.

Brené says “On a cultural level, I think the absence of honest conversation about the hard work that takes us from lying facedown in the arena to rising strong has led to two dangerous outcomes: the propensity to gold-plate grit and a badassery deficit.”

She describes “gold-plating grit” as the tendency to sanitize our stories of falling into something uplifting and redemptive, while glossing over the painful details and emotional consequences. I feel this happens more often than not when we speak of our cancer experiences. We summarize and move quickly to a more positive ending, leaving out the ugly bits – fear, pain, anguish, heartbreak, weakness, grief, devastation, and more. I believe we do this for multiple reasons – the first of which is sparing ourselves the pain of reliving the hurt again, especially if the experience is still fresh or ongoing. It is also very difficult for us to admit vulnerability, often describing it as weakness in ourselves or our character, so we definitely don’t want to voluntarily share it with others. As Brene suggests, we feel too much shame to let others see the intimate process of overcoming hurt. I think we also do this to spare our loved ones from their own pain of having to watch (often helplessly) while we struggle and fall.

I did this myself with my first cancer diagnosis – I was the queen of gold-plating grit. At first I didn’t want to talk about any of it at all and when I finally did, I would move quickly through to end on a high note, skipping all the difficult parts in between. I was finally able to admit something horrible was happening to me, but was not acknowledging the emotional consequences. This felt wrong to me and kept me from rising up and moving on. As Brene says, if we do not acknowledge the real hurt and fear, if we strip the emotional consequences, we remove the qualities that make grit and resilience important – toughness, tenacity, perseverance, knowledge, courage.

Brené also mentions a “badassery deficit”, which I think goes hand in hand with gold-plating grit. Cancer fighters and survivors are often called badass (or kickass, warrior, inspiration, brave, courageous, etc.). But so many of us shun those adjectives and push back, feeling we don’t deserve or haven’t earned those descriptions. I think this happens often when we have been gold-plating grit and are not being honest about our experience with cancer. I agree wholeheartedly with Brene that people standing fully in their own truth despite discomfort and vulnerability are true badasses. I wish more cancer survivors were able to see this about themselves, to see admitting vulnerability and being honest about the difficulties encountered does not make us weak. It is the opposite – a true measure of our strength and courage.

Chapter 1: The Physics of Vulnerability
This chapter discusses Brené’s “rules of engagement for rising strong”. These ten truths are fundamental for being able to get back up after falling or failing. I found myself nodding agreement to just about every word here, but a few sections stood out for me.

I want to be in the arena. I didn’t realize this at first when I was diagnosed with cancer, but it quickly became evident. I couldn’t just sit back and let these awful things happen to me, even when I thought I wanted to or didn’t think I had the energy or strength. I did want to get up, time and time again after being knocked on my ass and kicked while I was down there. I want to be brave. And honest. And open. With myself and those around me.

A lot of cheap seats in the arena are filled with people who never venture onto the floor. This paragraph was more about criticism, cruelty, or other negative feedback, but as a cancer survivor it meant something different to me. As I read this, I was remembering all the times I was told what I “should have” done or how things would be or what I could do to “fix” something, all by people who had no idea what I was going through. This is a good cancer, an easy one. This is nothing to worry about. You’ll be fine. If only you had eaten better before (or did eat better now). You should drink juice and take vitamins. You just need to exercise. I still get worked up when people say these things, whether to me or others (ok…admittedly quite often more than “worked up”). I dare greatly and share my story as often as I can, so I can help others to understand what being in the arena is like.

Once we fall in the service of being brave, we can never go back. Oof…big one. Every cancer survivor I have ever met has, at one time or another, wanted desperately to go back to where they were before the diagnosis. Yet part of being in the arena and rising strong is to realize the place “before” no longer exists…there is no ”back to normal”. This can be a difficult, often devastating realization, something which yet again shoves us to the ground in the arena. But as Brene says, this awareness can also ignite our sense of purpose and our commitment to daring greatly. Walking the line between wanting to go back and moving forward is a fundamental piece of rising strong.

The journey belongs to no one but you; however, no one successfully goes it alone. This was another big one for me. This was a huge hurdle when I was first diagnosed (and continues to be, if I am honest). I saw the diagnosis and resulting emotions as some sort of failure on my part, a weakness or character flaw. The last thing I wanted was to admit I was vulnerable and needed help. But cancer doesn’t really care what we want and I soon found myself at a point where I literally could not get through my daily life without help from others. I was ashamed of needing to ask for help and felt as if those around me would think less of me if I did ask. This was one of the biggest, most important and life-changing lessons I have ever learned…that we all need connection and we all need help at some point in our lives. And asking for help, admitting vulnerability, is not only a strength but can also be a gift to those you seek help from, who have likely been feeling powerless and wondering what they can do to ease your suffering.

Comparative suffering is a function of fear and scarcity. Right after my diagnosis, people would say things to me about how their lives or their trials were nothing compared to mine (this still happens, actually). I always respond by saying something about each of us carrying our own burdens, which cannot be compared. However, I found myself doing the exact same thing when I first started attending support groups or talking to other survivors. You had brain cancer? Well, mine was just breast, no big deal. You had a double mastectomy and four reconstruction surgeries? I only had a lumpectomy. You had 20 rounds of super harsh chemo? I did four of the easy kind. I was dismissing my own experiences, minimizing the hell I was living in. This was a harsh wake-up call for me, to realize our experiences are a matter of perspective and we need to honor our own struggles, no matter what they are.

Courage is contagious. Brené says “rising strong changes not just you, but also the people around you…your experience can profoundly affect the people around you whether you’re aware of it or not.” This has been a large part of my own truth, my own path toward authenticity. I will share my story (or parts of it) with anyone who wants to listen. If one tiny part of my experience can help another person, it is worth every moment and helps us both rise strong. Even if I am not sharing my story out loud, I can still make a difference for others by standing in my own truth and demonstrating how someone can rise strong.

 

Thanks for joining us for our Chapter 1: The Physics of Vulnerability of Rising Strong!  Join in next Monday for Chapter 2: Civilization Stops at the Waterline and in the meantime, learn more about the book club commentators!

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  At the end, we’ll have a book club discussion via video chat!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Book Club: Rising Strong, Commentators

Lacuna Loft book club

Meet the wonderful volunteers who are offering their comments and discussions of the book, Rising Strong by Brené Brown!  You’ll hear from an assortment of them each week, learning how they respond to each chapter of the book!  We’ll be updating this list as you hear from each of the commentators.

marnie-photo

My name is Marnie and I am a survivor of two cancers. I was diagnosed with invasive ductal carcinoma (breast cancer) in 2012 and papillary thyroid cancer in 2015. I also live with chronic pain and chronic fatigue syndrome related to the treatments received for those diagnoses.

That initial cancer diagnosis brought me to my knees. It paralyzed me with anger and fear and destroyed my strength, confidence, and self worth. I existed in a haze, trying to figure out what “normal” was supposed to be and questioning whether I would ever get there again. Though devastating, that diagnosis also prompted me to realize life is fleeting and uncontrollable and should be lived with excitement and joy. It led me to discover my inner strength and determination to get up and move forward. It reminds me to be grateful for every new day.

I have found amazing support and connection in the young adult survivor community, which continues to help me through the ups and downs of being a cancer survivor. Because of that support and connection, I am vocal about sharing my story and fiercely passionate about helping others navigate their cancer experiences and advocate for their own wellness.

If I had a life motto, it would be “I cannot be stopped…the universe isn’t done with me yet”. I am just getting started.

 

Interested in joining the chorus?  Email info@lacunaloft.org to add your voice to the book club!

If you’re just joining us, here are some logistics:

We will talk about a chapter each Monday until the book is done.  Then, we’ll use one more Monday to talk about general feelings from the book and anything else you’d like to discuss.  Join in, in the comments every week!  At the end, we’ll have a book club discussion via video chat!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Have A Spirited Weekend

The book club starts next week, the writing group started this week, and so much fun is right around the corner!

Here are some spirited weekend links from around the interwebs…

[list type=”like”]
[list_item]our young adult cancer book club starts next week![/list_item]
[list_item]a victory for the Women Air Force Service Pilots[/list_item]
[list_item]understanding how Hillary Clinton would govern[/list_item]
[list_item]how to help someone with depression[/list_item]
[list_item]learn how Lacuna Loft is unique[/list_item]
[list_item]how to coach your brain to stop being angry[/list_item]
[list_item]interested in teaching a creative workshop at Lacuna Loft? Email us! info@lacunaloft.org[/list_item]
[/list]

Have a spirited weekend Lacuna Lofties!