Welcome Charlene “Shar”! My Story, My Journey, My Testimony

Lacuna Loft is excited to continue introducing more young adult voices! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Charlene!

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Hello All! My name is Charlene and I am a wife, a mom of 3 amazing kids (ages 23, 14, and 4) and a 2x breast cancer SURVIVOR. I was diagnosed February 1, 2013, a couple of weeks before my birthday. Some birthday present huh! My cancer was ER/PR positive in the left breast. I was diagnosed very early so I had options, either a lumpectomy with radiation or mastectomy. I chose the latter. You see, my mom is also a breast cancer survivor, diagnosed at ages 32 and 65, so that played a big role in my decision. We are both did genetic testing and tested BRCA negative, so I decided to just have a single mastectomy. I was trying to save what I thought was a healthy right boob (to my surprise not so much). I had immediate reconstruction, I went with a TRAM flap. Somehow, after all of that surgery, I felt that I should have just gone ahead and done a bilateral mastectomy rather than the single. I knew in my soul that something just wasn’t right.  After having my mastectomy and recon on April 1, 2013, I had breast reduction on the right breast only to find out that there was cancer in that breast as well. My right breast was Triple Negative (TNBC). So 20 days after having a brand new perky boob, I was back in surgery to have my second mastectomy, again with immediate reconstruction. This time with my reconstruction I had to go with a LAT flap (latissimus dorsi). Since then I’ve had a ton of surgeries, from implants to revisions, I have about half a dozen scars to show for it. I’m not ashamed of my scars, I have come to embrace them. They are apart of who I have become, behind my scars is my story, my journey, my testimony. Breast cancer has forever changed me, and it is my goal to be an inspiration to others. I am my sister’s keeper!

Welcome Nikhil!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Nikhil!

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Nikhil was diagnosed with AML in 2011, and has had 2 bone marrow transplants from matched unrelated donors, the last in 2013. Despite getting sick in his final year of high school, he’s managed to get into medical school, and started writing a blog to both help other patients out and try and convince doctors and future doctors to understand, and care more for their patients. He aspires to find the cure, and is working on immunotherapeutic research right now, and has also started his own social enterprise, PlayWell.

Welcome Lara!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Lara!

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Lara is from London and was diagnosed with Grade 3 Triple Negative Receptor Breast Cancer in October 2014 after finding a lump whilst in the shower, aged 32.  After a Lumpectomy and the removal of 2 clear lymph nodes she had 6 rounds of Chemotherapy, a re-excision and then 23 sessions of Radiotherapy.  She is now in remission and has moved to Brighton on the South Coast and lives by the sea with her boyfriend and 2 dogs.

Her blog ‘Get Your Tits Out!’ documents her breast cancer journey.

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Welcome Mahalia!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Mahalia!

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Mahalia Breen is a Filipino-Irish quark bred in captivity in North Carolina. She has recently repatriated after six years in Europe and currently lives in rural Vermont with her spunky daughter and beer brewer husband. In addition to being a domestic goddess, she is also the author of the book 30ish, a certified teacher, an illustrator for beer labels, and the business manager for Casita Cerveceria, LLC.

Diagnosed with stage 3 triple negative breast cancer at the age of 32 while living in the United Kingdom, she has very strong feelings about the need for healthcare reform in the United States.

At this stage in life, she is at peace with the fact she will not likely live a very long life, but she is so grateful and happy to have made it this far past her diagnosis and hopes to be able to ride this wave for as long as possible.

This year, she is getting new boobs to replace the ones that tried to kill her, so she will probably write about it.

She is also a lover of Victorian literature and period dramas, and she cites them as a strong influence on her development. One of the characters she connected with at an early age was Jane Eyre.  This scene from the novel Jane Eyre has stayed with her through the years.

https://www.youtube.com/watch?v=mgXfdoE5GTk

While it’s become clear Mahalia will not achieve her childhood goal of immortality, she hopes to be able to make the most of however much life she has left, and she looks forward to generating content for Lacuna Loft.

Last Chance This Year To Support Lacuna Loft!

donate to Lacuna Loft

Lacuna Loft provides resources for your good days and your bad days, right at your fingertips.  We need your help to develop these programs and to provide them at no charge to young adult cancer and chronic illness patients, survivors, and caregivers.  Before the end of the year, donate to Lacuna Loft!

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]Donate Today![/button]

[list type=”like”]
[list_item]$20 helps a young adult survivor or caregiver participate in our book club[/list_item]
[list_item]$50 allows survivors + caregivers to share stories, in our Young Adult Voices program[/list_item]
[list_item]$250 funds a wellness workshop for 10 survivors and caregivers[/list_item]
[list_item]$500 connects 50 new survivors and caregivers to Lacuna Loft’s wellness resources[/list_item]
[/list]

Make a difference in the lives of young adults impact by cancer and chronic illness today!

Lacuna Loft is an entirely community funded charity that provides all programs at no charge to young adults in need!  Your gift is tax deductible to the full extent of IRS rules & regulations.

#GivingTuesday

#GivingTuesday

Today is #GivingTuesday!  Today we all come together and offer support to our favorite charities as we celebrate giving and generosity.

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]Donate Today![/button]

This year, consider giving to Lacuna Loft.  Our programs are growing and expanding and each one helps young adults facing cancer or chronic illness the tools and resources to adapt to their difficult circumstances.  Cancer resource centers, in their brick and mortar locations have helped the cancer survivor and caregiver community for years.  They are an important and integral part of the in-person cancer care community.  But they are geographically limited, further isolating those living in smaller communities, and they often lack programs appropriate for the young adult population.  Lacuna Loft seeks to offer these psychosocial resources that have been proven essential to improving quality of care and quality of life, in an age-appropriate package for young adults.

There is so much in store for the future of Lacuna Loft.  In the next 6-8 months, your support will foster online wellness workshops and support groups.  These online programs will connect young adults facing drastic health concerns.  While most of their peer group hasn’t faced anything like cancer or chronic illness, the young adults they meet and interact with through Lacuna Loft will help to end their isolation and improve quality of life.

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]Donate Today![/button]

No more brick and mortar.  With your help, here comes Lacuna Loft, because we are #StrongerTogether.

Lacuna Loft is an entirely community funded charity that provides all programs at no charge to young adults in need!  Your gift is tax deductible to the full extent of IRS rules & regulations.

Supporting Lacuna Loft’s Programs

Two weeks ago, Lacuna Loft put out its first ever call for donations.  Being a completely community funded entity means that we can provide our resources and services to young adults in need completely free of charge, and that we need you to do it.

In the last two weeks we have raised a whopping $2400!  Way to go!!!  Thank you so much to everyone who has donated so far!

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]Donate Today![/button]

At a time when their peers are advancing their education, careers, and families, young adult patients and survivors face time away from school and work to facilitate treatment and recovery.  They often feel an intense sense of loss of their once busy lifestyles, experience social isolation from their peers, and are overwhelmed by the daunting financial burdens they face.

Imagine feeling alone during one of the most important and stressful points in your life because of serious illness.

Lacuna Loft needs your help to empower young adult cancer and chronic illness patients, survivors, and caregivers.  Our programs provide psychosocial and lifestyle support that are age-appropriate and that address the challenges unique to young adults facing dramatic health concerns.  Our flagship program is an online way of story telling, helping end isolation and provide an outlet for these young adults to tell their truths.  Next comes online wellness programs and workshops.

But we can’t get there without you.

Your donation goes straight to helping these young adults affected by cancer or long term illness.  Give a little or give a lot to help these young adults adapt their once bustling lives to fit their new challenges and learn to live vibrantly in a new normal.

No more brick and mortar.  With your help, here comes Lacuna Loft, because we are #StrongerTogether.

[button colour=”accent” type=”dropshadow” size=”large” link=”https://cactuscancer.wpengine.com/donate/” target=”_blank”]Donate Today![/button]

Lacuna Loft is an entirely community funded charity that provides all programs at no charge to young adults in need!  Your gift is tax deductible to the full extent of IRS rules & regulations.

Behind the Scenes: Lacuna Loft’s First Days

Here at Lacuna Loft, we are all about the behind the scenes, nitty-gritty of running an organization. When I started Lacuna Loft, I relied on some very communicative and helpful small business owners to help guide me…along with a load of library books!  In the Behind the Scenes series we’ll talk about the various stages of the development of Lacuna Loft and some of the lessons we’ve learned along the way. You’ll hear often from me, the Founder and CEO of Lacuna Loft, as well as from our Design Guru, board members, contributors, and more!

Today we’ll discuss the very beginnings of Lacuna Loft and how we chose our business structure of a not for profit corporation.

If you’ve missed other posts in our Behind the Scenes series, check out a day in the life of Lacuna Loft’s founder!

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Lacuna Loft grew directly from a lack of resources that I experienced during my time spent caregiving, during my own cancer treatments, and into my survivorship.  I was a super busy graduate student, marathon runner, and doggie mama.  I loved salsa dancing and found every excuse possible to stay up late having fun.  Then caregiving hit, followed closely by my cancer diagnosis.  When I took a summer off of school to finish treatments I had no idea how to take care of myself emotionally.  I didn’t know what exercise meant.  I didn’t know how to keep myself entertained if running 5 miles, working in the lab, or staying up late weren’t on the table of options.  What followed were a few very difficult months of self discovery.

Two summers later I left graduate school and needed to face a new reality.  I started dreaming and scheming about how to fill my time and slowly, Lacuna Loft was born.  I wanted Lacuna Loft to be a place where one could come, take a break, a hiatus, a pause, and hang out.  Where one could learn how to self care and how to advocate for health and well being.  Where I could help others face their new reality with cancer with guidance, creativity, and a shoulder to lean on.  I also wanted a working environment where I could treat myself with compassion and love everyday.

My husband helped me choose a name, get a website up and running, and draft a set of branding images and logos.  We spent hours tweaking colors and website layouts.  I spent even more time talking with everyone I could about my dream.  I talked with young adult cancer survivors and caregivers, people at an expo in Champaign, IL, people in hospitals and cancer resource centers.  If I could find someone to listen to my “pitch” and offer feedback of any sort, I took the opportunity.

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While building Lacuna Loft, I started with a drive and mission to build a blog and a community.  Money, though definitely necessary for living in today’s society, was not a top priority.  Lacuna Loft was thus started with the goal of being a self sustainable and free blog, selling care kits for patients, survivors, and caregivers.  Marketing, however, is not my area of expertise.  Over the course of several months, I discovered that the people who would be buying the care kits were often not the ones actually going through treatments and therefore didn’t recognize the importance of each item in the care kits.  While the kits received wonderful reviews from survivors with whom I spoke (and who purchased the kits), it became clear to me that the care kits required careful marketing, and that marketing care kits was not my life’s passion.  I wanted to write with Lacuna Loft while building a brand and advocating for young adult cancer survivors and caregivers.  The magazine needed to be my top focus.

While looking into other business structures (we had been set up as a sole proprietor thus far), I continued talking with hospital presidents, social workers, marketing departments, resource centers, nurses, and anyone else I could talk into taking a meeting with me.  Over and over again our collaborations were made more cumbersome because they were not for profits and we were set up as a for-profit.  I hit the same road block when approaching nursing organizations and other young adult cancer organizations to join their resources web pages.  If everyone we wanted to work with were nonprofit organizations, a not for profit we would become!

While having a meeting in Chicago with the founder of True North Treks, he suggested that I talk with the Bluhm Legal Clinic out of Northwestern University.  Their Entrepreneurship Law Center takes a handful of clients each semester and helps them with their legal needs for free if you’re seeking to become a nonprofit, and at a reduced rate for for-profit entities.  Lacuna Loft applied and was accepted!  We incorporated as a not for profit corporation in the State of California and applied for (and received) our tax exempt 501(c)3 status.  We formed a board, approved by-laws and everything else required by the State of California, and the rest is history!

It has never been important to me how Lacuna Loft is structured.  As long as Lacuna Loft is allowed to work with other key players in the healthcare and young adult cancer arena and as long as we are able to reach young adults facing cancer as survivors or caregivers, I’m a happy Founder and CEO.

Let us know if there is something in particular that you’d like shown as part of our Behind the Scenes series!

Welcome Jasmine!

Lacuna Loft is excited to continue introducing some guest bloggers! These great folks represent a variety of perspectives on the myriad of topics covered here at Lacuna Loft. Before everyone starts really getting into the nitty-gritty of all they have to say, we wanted to introduce them a bit. Without further ado, here is Jasmine!

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As a thriving 22 year old working in London, I was on top of the world. I had started my life adventure….but cancer had other plans. I ended up scarred, physically and emotionally, and although I beat the disease, I thought I was going to be scarred for life. However, I found a way to see my scar as empowering and beautiful.

In 2011 as a 23 year old cancer survivor, I started a project called Scar Stories. I organised professional photographers to capture beautiful images of cancer survivors and their scars and held exhibitions to raise funds for young adult cancer support. The project kicked off and it changed my life. Scar Stories Inc. is now a registered charity and sells a book of portraits and has lots of projects on the go.

As a cancer survivor four years in remission I am still confronted by unique issues on a daily basis. Writing about what it’s like as a young adult cancer survivor helps me deal with these issues and I hope that by sharing my writing, other young adults in similar situations don’t feel so alone.

Lacuna Loft Is Filing for Non Profit Status!

Yep, that’s right!  We are officially working to become a non profit.  So many little things went into making this decision but we wanted to share the end result with you all!  While not yet official, here at Lacuna Loft we are slowly getting everything in order, forming a board, assembling the paper work, dotting our i-s, and crossing our t-s to file as a 501-c3.  As soon as everything is ready, we will move everything over to LacunaLoft.org.  Don’t worry though…we’ll keep you updated!

The Lacuna Loft team wanted to officially say Thank You to everyone who has been supportive of all of our hard work since our March 3rd launch.  Hours and hours and hours have gone into article writing, brain storming, web developing, paper designing, meeting having, telephone calling, and much more.

If you’re interested in learning more, helping out, or have any other questions or concerns, please do not hesitate to shoot an email our way!  Just contact info(at)lacunaloft(dot)com!