AYA Cancer Awareness Week Is Next Week!

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Next week, April 6-10, is Adolescent and Young Adult Cancer Awareness Week!  Along with a coalition of nonprofit organizations focused on AYA cancer, Lacuna Loft is excited to help bring attention to AYA Cancer, share common misconceptions about AYA’s experiences, and present opportunities for young adult cancer patients, survivors, and caregivers to engage in online programming specifically for you!

All week long there will be graphics and social posts for you to share and a variety of online meet-ups, hangouts, opportunities for movement, writing workshops, and more to join.  (Lacuna Loft is offering an Open Write Night which you can already sign up for here!)

Coalition members include the Ulman Foundation, Cook Children’s, Dana Farber Cancer Institute, the Dear Jack Foundation, Elephants and Tea, Epic Experience, the Expect Miracles Foundation, First Descents, the Fort Worth AYA Oncology Coalition, Lacuna Loft, Oregon Health & Science University, the Send It Foundation, the Steven G. AYA Cancer Research Fund, Stupid Cancer, Teen Cancer America, True North Treks, and the Young Survival Coalition.

Share the love and get involved next week!

Flashback #13: Being At CancerCon

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To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #13: Being At CancerCon, written by Mallory. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

….When I arrived to my first activity, the run/walk scheduled for Friday morning, I was nervous, toting my registration bag of swag, and feeling silly to be at a semi-professional event (since I was representing not only myself but Lacuna Loft) in multi-colored knee length tights and a running shirt.  I stayed off to the side and just watched for a few minutes as groups of people, who seemed to have known each other for years, congregated and visited in the downstairs lobby of the hotel.  Then, someone walked up and just started talking to me.  He was friendly, but not so overly friendly that I immediately worried about what cult I was joining, and very welcoming.  During the run/walk I was supposed to be having a walking meeting with someone so I kept an eye on her while I kept talking to my new friend.  Once the group started making its way out the door, my walking-meeting partner yelled out for me, and I quickly joined her.  From there started an epic couple of days.  The first timer welcome and orientation involved a rock-paper-scissors tournament where, once you lost a round of the game you turned into a cheering section for the person you had just lost to.  Eventually, the whole room was divided into two, yelling and cheering masses, each supporting their own rock-paper-scissors champion.  Over the course of the week, I kept running into people and saying, “oh yea, hey!  I played you in rock-paper-scissors!”…

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Read the rest of the article here!

Flashback #16: Styling Pixie Cut Hair

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To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #16: Styling Pixie Cut Hair, written by Mallory. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….My sister-in-law is getting married this weekend!  With my short hair, I was worried that my options for wedding worthy style were limited…boy was I wrong!  There are SO MANY different ways to style pixies and quite a few video tutorials to help you along the way.  Whether short hair is your jam, or you’re growing your hair out after chemo treatments…you definitely have more than a few ways to style your pixie cut!…

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Read the rest of the article here!

Flashback #31: The Anti-Bullying Cancer Manifesto

cancer bullying

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #31!  The Anti-Bullying Cancer Manifesto was written by Christina.  These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

This may seem like an odd topic when discussing cancer, but cancer bullying is surprisingly prevalent – and it needs to stop!  In my time going through cancer, and since recovery, I’ve discovered that there is a little-known – yet highly-destructive – phenomenon called, Cancer Bullying.

This manifesto is intended to shine light on the many forms cancer bullying can take, and why they are detrimental to those experiencing cancer.

Types of Cancer Bullying

Cancer bullying comes in many forms, but in this manifesto I’ll go into these four main types of cancer bullying:

  • Treatment choices (aka, East vs West)
  • Emotions & boundaries
  • The cancer pissing contest (aka, My cancer is worse)
  • Nit-picking over words, names and references

All of them are pervasive, and some – ironically – sprout from good intentions, and can even come from our loved ones.

I dedicate this Anti-Bullying Cancer Manifesto to all past, present and future cancer warriors.

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Read the rest of the article here!

CancerCon 2016 In Photos

CancerCon 2016

CancerCon was an absolute blast.  I wasn’t sure what to expect…I’ll admit that I had my reservations.  While I have a strong LOVE (seriously…some of the best folks around) for the people I work with on the Steering Committee and many others I’ve met at the conference, the angry branding of Stupid Cancer is not one that I enjoy.  I knew that I would be busy and tired and maybe not have a ton of time to myself.  We all have different tastes, right?  With a year in between one CancerCon conference and the next, it is easy for me to forget the real strength that comes from the event.  It isn’t the branding of the organization that holds it (though I do enjoy the rock star like glam that they adhere to the entire weekend), or the local celebrities that come…

The power of CancerCon is found in each and every survivor and caregiver that shows up, speaks their truth through tears and laughter, and shows love to everyone around them.  It’s the late night banter, the fatigue induced laughter, the new definition of “normal” that appears in a place when everyone there has been through something as profound as cancer.  This is what will bring me back to CancerCon next year.

I’ll speak more in the next few weeks about various pieces of the wonderful event that is CancerCon, until then enjoy some photos and remember, you are never alone.  If you missed CancerCon or were there but aching for some more connection with your young-adult-cancer-having-peers, check out some of the great programs here at Lacuna Loft.  You still have time to sign up for the next Writing Group or the soon to come Drawing Workshop.  These programs happen from the comfort of your own home while still connecting you directly to 10 other young adult survivors or caregivers through video chat.

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Happy 2 Years Lacuna Loft!

Lacuna Loft

Wow!  I can’t believe that 2 years have gone by!  So much has changed since we launched Lacuna Loft on March 3, 2014 and since our birthday one year ago.

Lacuna Loft is hitting its stride and settling into its life as a dynamic nonprofit.  I am so proud of what Lacuna Loft has grown into.  I am so excited by the programs that we have going and the programs that are arriving soon.  It has been 2 years and 6 months since I left my life as an aerospace engineer to dream and scheme on how I could help make my own life better as well as the lives of others going through serious illness.  What an incredible ride it has been so far.

Given how far we have come and how far we are going, the Lacuna Loft team would like to request that you fill out our super easy-peasy survey below.  It will provide us with information and feedback on how better to serve you; about what you’re interested in and what you could do without.  Feel free to fill in as much or as few details in that last question as you’d like.

Lacuna Loft is here for you and we are #StrongerTogether.

P.S.  Happy 1 Year Lacuna Loft! & Launch Day!

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Book Club: Planet Cancer, Meet The Authors!

planet cancer

Welcome to the comments and discussion of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying SaneChapter 6: People, and Chapter 7: What Now?!

Let’s get started!  Meet the Authors!

I recently had the pleasure to chat with the authors of the Planet Cancer book, Heidi Adams, CEO of Critical Mass, and Christopher Schultz, writer and founder of Start Here Development.  I hope you enjoy it!

Thanks for joining us for our first book club of Planet Cancer!  We had such a great time reading and discussing.  Are you interested in seeing another book club here on Lacuna Loft?  Have any books in mind?  Let us know!

Book Club: Planet Cancer, Chapter 7

Welcome to the comments and discussion of Chapter 7: What Now? of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane, and Chapter 6: People!

Let’s get started!  Chapter 7!

Carly:

It’s such a common question in your C life. During the process & after – ok, that’s taken care of, now what’s the next step?

This chapter provided several great examples, all very different (which was good to read…there is no right answer for everyone). Your “new normal” is yours for the taking; it’s a blessing to have. Move mountains, travel, sit back and relax, find a new job, take up a new hobby, or all/none of the above.

Post C life is different. Things have changed. Your body is likely different (physically) & you probably think a little differently as well. As the book said, it’s important to take the time to figure out this new normal. All the answers might not come at once. You may feel differently about people, places, things, and causes. Embrace it.

I really appreciated the details on employment in this chapter. When wrapped up in the C world and focusing on being your own health advocate, it can be hard to juggle everything. And frankly, work can be the last thing on your mind. Know the laws. Know your rights. Know what can and cannot be asked of/from you. And if you have to explain an employment gap (ya know, because you were busy kicking C’s ass), be prepared for what to say.

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane, and Chapter 6: People.  Join in on Monday, September 21st for a very special Meet the Author post with Heidi Adams and her brother, Christopher Schultz!

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.  We’ll also have a great “meet the author” post coming up!  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club on Planet Cancer?  Any thoughts on what book we should try next?

Book Club: Planet Cancer, Chapter 6

Welcome to the comments and discussion of Chapter 6: People of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, and Chapter 5: Staying Sane!

Let’s get started!  Chapter 6!

Carly:

People. Of all the chapters thus far, this one was by far the most emotional for me (grab the tissues). It brought back so many memories, both good (remembering all your loved ones who helped you) & the bad (ya know, the person who tells you everything happens for a reason).

A comment that stuck out early to me in this chapter was from Haley, shown below.

I always knew I had good parents, but I learned that in fact I have great parents. For me, nothing was harder than to watch my parents. They had the cancer as much as I did and wished they could take my place.

This is SO TRUE. True for my parents and siblings. That was certainly one of the worst parts of the whole process – watching how scared or nervous they all were. It’s funny what you do and don’t remember. But that feeling — looking at their faces when were waiting on the hard answers – that stays with you.

I think this chapter is important because for some, the anxiety of people (what they’ll say, how they’ll act around you or behind your back, etc.) is just as stressful as the big parts of the C process. Because really, people play such a big role and knowing what to expect and how to handle difference situations is really helpful. Like when to tell people to leave you alone, stop looking at you with sad eyes, and say thank you.

My people? They are so loved & appreciated. In fact, I’m going to tell them all that now. I encourage you to do the same.

Cheryl:

“Be the arbiter of your own time and be unrelenting. People will understand. And if they don’t, hey, you’ve got cancer.”

This chapter covers all the people that make up your support system – from your inner circle to people you barely know. When you make your cancer diagnosis known, it can surprising to see how many people will offer their assistance, drop off meals, watch your kids, etc. I think you realize who your true friends (and family) are when you are dealing with cancer; they are the ones who step forward and really provide you with the support that you need. You might be surprised as to who is there for you and who decides to drop off of “Planet Cancer.” This chapter didn’t touch too much on the friends who distance themselves from you during cancer, but it’s something I’ve seen myself and heard from my “PWCs” (people with cancer). It also gives you permission to pull the “C” card if you need it; it’s okay to say no and it’s okay to take a break from family and friends if you need it!

The section on how to talk to your children about cancer really hit home with me. When I was diagnosed my children were ages 9, 5, 4, and 8 months. When we told them about my cancer diagnosis and upcoming surgery/treatment, we made sure to emphasize that it wasn’t anyone’s fault that I had cancer and that it was not contagious. Even after saying that I remember just a few weeks later driving in the car and my 5 year asking me out of the blue “Mommy…will I get cancer too?” My heart broke for her; my heart broke for all of my children and I felt so guilty for what I was putting them through…even though I certainly hadn’t made the decision to bring cancer into our lives, I still felt guilty.

This chapter also covers dating after a cancer diagnosis and how/when to let a prospective partner know about your health. There’s a section written by caregivers that will help the people who are helping you. It was interesting and heart-warming to read about cancer from a caregiver’s perspective. One quote that brought tears to my eyes was from a caregiver who was helping her sister with cancer – “I understood, just a little, what my place in this was. Or maybe I didn’t understand it so much as feel it somewhere that I knew counted….It seems that those who get cancer are the only ones who can handle it. They’re going through it, not you. You’re going through something different. You watch the great ones shine; you get to be near them. Like light exposed to a prism, you are transformed.”

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, Chapter 4: Side Effects, Chapter 5: Staying Sane.  Join in on Tuesday, September 8th for Chapter 7: What Now?.

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.  We’ll also have a great “meet the author” post coming up!  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Book Club: Planet Cancer, Chapter 5

young adult cancer book club

Welcome to the comments and discussion of Chapter 5: Staying Sane of the book, Planet Cancer!  Catch up on Chapter 1: DiagnosisChapter 2: Getting Your C-Legs, Chapter 3: Treatment, and Chapter 4: Side Effects!

Let’s get started!  Chapter 5!

Carly:

An excerpt from the first page of this chapter: “We on the Planet firmly believe in acknowledging both the ups and downs – the fear and anger is just as much a part of this as the joy and laughter. It’s called the human experience.”

AMEN.

Staying sane (with or without cancer) can be a challenge. Work, friends, family, and general life stuff. Add cancer to the mix and things can get wacky. You. People around you. That’s why this chapter was so fun to read – some of the crazy things I did to stay sane (especially while waiting for test results) were also the ideas of others. Whew.

I’m glad a large part of the chapter talked about sex. I really expected this to be addressed in side effects, the previous chapter, but alas – here it is! Info and tips for males, females, couples, and singles – it’s there. K-Y and all.

Several stories in the religion section reminded me about the awkward things people said to me or things I have heard said to others. Yeah, I totally get it – it’s sometimes hard to find the words (I find myself struggling in various situations). If you need some help, try these cards made by Emily McDowell, a cancer survivor. She has some real gems.

The bottom line: do what you need to do to keep yourself together. Wear what you want (that’s practical for your treatment, of course), seek professional help if you feel the need, ask questions about sex and communicate your feelings to your partner, wear a wig, don’t wear a wig. Just do you.

Cheryl:

“Cancer touches you in every way: mental, physical, social, spiritual, environmental.”

This quote really resonated with me and this chapter is full of tips on how to cope with the changes that cancer brings to all facets of your life. We all know by now that exercise is good for us – and even though there are days when you feel like you can’t even get up off the couch (and that’s okay!), there will also be days when you do have the energy to move and even something as simple as going for a short walk can help you feel better. Same goes for nutrition – food is fuel and it’s important to eat healthy (of course there’s no reason to totally deprive yourself!).

There’s a lot of sex talk in this chapter; I’m pretty sure all ‘bases’ are covered! 😉 Other topics touched on are fashion/wigs, religion, and complementary/alternative medicine (I’m a big fan of both reiki and healing touch).

Last but certainly not least there is info about reaching out to mental health professionals – you should definitely consider adding a mental health specialist to your medical team. It’s hard to stay sane sometimes when dealing with the curve balls normal life throws your way – add cancer in and the equation will usually result in a mix of depression and anxiety. There’s no shame in seeking help. It’s important to take steps to help yourself feel better and learn coping strategies to help you as you deal with the added stress cancer brings to your life.

Thanks for joining us for our first book club of Planet Cancer! To see what you’ve missed, check out Chapter 1: Diagnosis, Chapter 2: Getting Your C-Legs, Chapter 3: Treatment, and Chapter 4: Side Effects.  Join in us on Monday, August 24th for Chapter 6: People.

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.  We’ll also have a great “meet the author” post coming up!  Join in, in the comments every week!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?