Comment On Research Results!

computer on bed with water

The Behavioural Sciences Unit, a research group in Sydney, Australia is looking for cancer survivor consumer representatives aged 15-39 to provide feedback on some brand new study results from the AYA Global Accord international research study. Some of you may have provided input on this study in 2018 when it was first applying for funding. This global study is being led by Dr. Ursula Sansom-Daly, a psychologist and researcher whose work focuses on AYA cancer, and she is working with a team of international experts from Australia, New Zealand, USA, Canada, and the UK.

The study involved AYA healthcare professionals completing an online survey. This survey aimed to find out what an international group of healthcare professionals thought ideal end-of-life communication with adolescents and young adults with cancer should look like, and what type of training they wanted to improve their skills in this area.

The first thing we’d be seeking your help with would be commenting on the results from this survey based on your experience, via an online survey format.

Later on, there will also be an opportunity to join a teleconference with other young cancer survivors and the research team to discuss your perspectives on the research findings some more. Consumers will also have the opportunity to contribute to a publication (an academic journal article) about consumers’ views.

If you’re interested, fill out the form below and Lacuna Loft will forward your information along to the research group!

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!


CancerCon In Quotations

As we’ve already talked about, CancerCon was an amazing experience.  So many survivors.  So many advocates.  So many friendly faces.  I will definitely be going back next year.

Here are a few glances at the magic of CancerCon…in quotes from the weekend.  I didn’t add who said the quotation.  If you see one of your own though, and you want credit for the awesome quote (or you want it removed) just shoot me an email!  Sometimes I’ll provide a bit of explanation but sometimes I don’t think its necessary.  The event was intense and powerful and so many great things were said.

This is where we all learn to be tough, brave, bitches.”

“The two of us are brave bastards.”

“We are no longer B-list subplots!” – talking about how young adults with cancer used to be the on-the-side characters while their support system received the main spotlight

“I feel like I crammed a nonprofit degree up my ass.” – oh Matthew Zachary, I can definitely relate to this one!

“You have so much permission to be pissed as hell…but you have an opportunity now…you are not alone.” – talking about Instapeer, check it out!

OSW = Oh Shit Window

“73,000 young adults diagnosed per year, 1 every 8 minutes.  Let’s be there for them.  Let’s be there for us.”

“Colorado, you are the healthiest state and you should be proud of that and you have no goddamn humidity in your air!”

“If you follow the rules, you’re doing something wrong.”

“Now I share my story like a boss.” – in reference to sharing your story once you feel in a place to do so

“Whenever I’m stressed, I watch kitten videos on youtube.”

“I don’t sit in that shit boat.”

“I’ve been getting so used to being open and excited about everyone I meet at the conference that I almost knocked on that stranger’s car window just to show them that we were eating donuts too…but I stifled it” … “I know!  I just have this urge to go up to someone and start talking about fertility” – this one is paraphrased…and the conversation was hilarious

Have any more from the weekend?  I’ll definitely add them!

A Mantra A Day…


I’ve always loved singing… when I was a kid I would sing along to songs on the radio, even if I didn’t know them.  I would listen to the words, and anticipate what was coming based on the line or even just the first sounds of the word.  Okay, often it was a jumbly mess, but I loved it!

When I was in school and going to church regularly, I loved the singing of the worship.  I loved to get lost in my voice.  I always loved musicals and would come home from school and sing and dance around the house (with no one home, of course)!

Voice has resonance for me.  I like to feel the vibration of sound in my throat, in my body.  I like music and have worked with the muscles of my voice for a long time without knowing that I was refining them.  Naturally, when I met mantras in my yoga training, we hit it off.

Well, actually, at first I thought the Sanskrit words were uncomfortable and strange and I didn’t know what I was saying.  Meaning is important to me.  But as I gained understanding, the unknown language with deep layers of meaning stuck with me.  As I would chant/sing with my words on paper or with my eyes closed and feeling through my 108 bead mala, I found peace.  Trust.  A prayer in another form.  One layer is the words and their meanings.  Another the melody repeating over and over.  Another in the vibration as it resonates in my body.  Another is the history of the mantra and that I’m connection to unknown amounts of others who have said this prayer before.   On great days, I feel unbelievably content and complete after reciting mantras (and who couldn’t use a little more of that?).

I’m working on practicing these types of formal Sanskrit mantras more in my life (check out this mantra for obstacles).  AND, I also have mantras that are informal (and don’t require singing!).  These are sayings or phrases that ring deeply true to me.  Mottos.  Inspiration.  Soul stuff.  I write them on my chalk board.  I breathe in and out thinking or saying them to myself.  I write them on cards to others and post them on my social media.  They come from ancient mystics, favorite books, comedians, friends, anything!  Here are a few that I’ve been chewing on lately.  If one rings true for you, grab it and keep it somewhere great – on a mirror, on your phone background, or just tucked into your heart.

We’ve talked a little about finding your own motivation and mantra before!  Have you seen our posts about beautiful message tucked in public placesinspirational quotes, a wonderfully uplifting songmotivational desktops, a great life manifesto, being darn tough, and picking your own mantra!  Let the mantra’s truth, the vibration of juicy awesome love-joy-compassion, fill you up.

“Do that which best stirs you to love.” -Teresa of Avilia

“I am doing well.”

“We cannot attain what we don’t pursue.” -Gioconda Parker, yogi

“Breathe in.  Breathe out.”

“Change is the only constant.”

“Rule your mind or it will rule you.” -Buddha

…and, more ideas are online here!

Bonus: I find mantra paves the way into a meditation – try it out!

Look around online or in your life for your inspiring mantra.  We’d love to hear what you find on the blog or social media!

5 Tools to Enter Meditation

5 tips for meditation

Welcome to the third post in a series on meditation techniques and lessons.  You can read the first post here and the second post here.  Meditation can be a powerful tool to help calm your mind and anxieties.  We hope you enjoy!

I have found that often I need something to get my thoughts to begin slowing down to enter into meditation.  After my alarm goes off on my phone in the morning, I’ve probably already noticed some new emails to read, thought about what food I want to prep for the day and looked at my schedule.  Even if I aim to meditate first thing in the morning, sometimes there are a lot of buzzing thoughts already filling my mind.  Here are some entry points that I’ve played with to quiet my mind and help guide me to stillness:

1. Walking Meditation – This is exactly how it sounds.  Walk around (inside or outside) but very slowly.  Pay attention as your heel and then ball of your foot and then toes grab the ground.  Feel the back of your foot as it lifts off when you move forward.  See if you can notice each sensation in your body as you walk.  Where do you put your weight?  What pace do you want to be at?  Find yourself completely absorbed in your movement.

2.  “I Am Enough” Meditation – With each inhale breathed, “I am,”  and with each exhale, “Enough.”  As thoughts come to my head about what I want to do or be or things I wish I could change… I remind myself that as I am, I am enough.  And on the way, I learn all the areas of my life that I think need more.  My health, my physical appearance, my accomplishments, my relationships, my career… And I begin to remind each area that I am enough already.  Seeds of new stories…

3.  Follow your Ears – When you close your eyes, let your attention follow the sounds around you.  Focus on the loudest sound – the birds chirping, a train going by, the sound of the heater, anything.  It may change during your time sitting for meditation but let yourself completely go into that sound.  Notice that we attach meanings to sounds (birds, train, heater).  What can you notice beyond their meanings about the quality and feel of each sound?

4.  Levels of Awareness – As you sit down with your eyes closed, begin by hearing and feeling the room around you.  Notice the temperature, the sounds, the spaciousness.  Slowly draw your attention then to what is near you, what you can feel.  What is the surface you are sitting on like?  What do your clothes feel like on your skin?  Finally, bring your attention inward.  Notice your breath, your heart beat.  Can you feel your digestion at work or any muscles responding to how you are sitting?  After you’ve observed all these things fully, maybe you will enter into stillness to observe your mind.


5.  Focused Gaze – Sit with your eyes open and an object in front of you.  You could sit very close to a wall (like Zen), light a candle, or look at an image of a mandala (or any drawing!).  With your eyes, discover the details of the object.  A wall might really challenge your sense of observation!  With a candle, see the edges of the flame move and the colors change within the flame.  With a mandala, let your attention trace the edges of the lines around the circle.

What tools have you played with to start meditation?  What have you learned from them?  Did these 5 tips for meditation help get you started?  Have you tried meditation as a young adult cancer survivor or caregiver?

Welcome To National Young Adult Cancer Awareness Week!

national young adult cancer awareness week

Yep!  April 6-10, 2015 is National Young Adult Cancer Awareness Week!

With the knowledge of this, here is my next question…what should we do (as patients, advocates, and organizations) to bring awareness to young adult cancer and all of its topics?  How do you think we should be pushing the envelope to better educate, inform, and reach out about the importance of providing age-appropriate resources to young adult cancer patients, survivors, and caregivers?

Last Thursday there was another tweet chat edition of #ayacsm.  (the next one is April 19th at 8 pm ET if you want to join!)  This great group is comprised of ya cancer organizations, young adult survivors + caregivers, as well as health care providers.  The question remains though, how do we continue to bring in more young adult cancer survivors + caregivers into our tribe?  What kinds of resources are/were you craving as a young adult cancer survivor or caregiver?  If you found the resources that you wanted, how did you arrive there?

How can we continue to build awareness about all of the specific needs that young adult cancer survivors + caregivers require?

Together we can build power, strength, and knowledge!  #ThisisAYACancer

For more information about what is happening this week for National Young Adult Cancer Awareness Week, check out this information from Livestrong.

With Lemons Come Lemonade

go with the flow

Young adult cancer or chronic illness makes life more difficult to navigate.  Quickly, the amount of control that you thought you had over your life is greatly diminished and so many things are forced to change.  Adapting to those changes takes practice and patience.  Learning to go with the flow is often a great asset.  This doesn’t have to mean that you let every little thing go, but there are definitely things that can be altered or shifted in order to create a more balanced life with cancer and into survivorship.

One of the traditions that I have carried on from my mother is sending out Holiday cards and letters.  Every year I do my best to send them out before heading to see family over Christmas.  I rarely make that deadline.  My next goal is to have those cards and letters in the mail by New Years…  Well, this winter, New Years came and went and I still hadn’t even finished the letter.  The idea of breaking what was such an important tradition to my mom was almost unbearable to me.  I’d already lost her and now I was losing a beautiful gesture to my friends and family.  Well, with lemons come lemonade and with the new year comes Valentine’s Day.  Why not go with the flow and send out Valentine’s Day cards?

So I got some cards for cheap off of amazon (using Amazon smile to donate to a charity close to my heart!) and rebranded my family’s holiday letter to include some Valentine’s Day cheer!  An initial round of cards went out and I ran out!  Sooo, I purchased a handful more and sent out a round of Belated Valentine’s Day cards.  What could have been a stressful situation turned into a fun way to connect with family and friends.

go with the flow

How do you take lemons and make lemonade when young adult cancer or chronic illness affects your life?

Happy 1 Year Lacuna Loft!

Lacuna Loft

Today is the first anniversary of Lacuna Loft’s launch day!  What a whirlwind of a year it has been!

We’ve been to 2 different expos, a conference, worked through a lot of business and website development challenges, and found 12 different awesome contributors.  We’ve done a fair number of cool DIY projects and recipes, talked about self care as often as possible, and started offering you some awesome weekly yoga posts.  We’ve had a few series go through the blog and listened carefully to feedback from many of you about what else you’d like to see here on Lacuna Loft.  Our founder had a two clean scans and cut off her hair for Locks of Love.  We’ve had meetings, started collaborations, and met so many awesome people in the young adult cancer world.  We even started working with a great group of lawyers to help us file as an official non-profit.

This next year we’re already attending another expo, going to a few other exciting conferences, designing our first fundraising campaign, and looking forward to a few rad collaborations with other organizations.  It is going to be a great year.  We’re excited to bring on some more people and start really taking things to the next level.  Thank you for your love and support!

With love,

Mallory & Brett and the Lacuna Loft team!












critical mass conference



P.S. Launch Day!

How Knitting Saved My Life

how knitting saved my life

I was asked what was something that helped me get through my cancer diagnosis and treatment. Several things did help, journaling my feelings, talking to other cancer survivors (you’re a survivor from the moment of diagnosis!) and keeping as active as possible even if it was just getting out of bed and sitting up in a chair. But the number one thing that both saved my life and my sanity was my knitting.


During the months of chemotherapy I finished five hats, a cowl and a scarf. I started but never finished two sweaters and a pair of socks. Knitting gave me a purpose, a way to mark the passage of time, and most of all an outlet for my pent up anxiety and anger. Knitting went from something that I would do most days to something that I had to do every single waking moment. If I knit fast enough, I could outpace my cancer’s growth. If I bought enough yarn and had enough projects planned, I could keep death at bay. St Peter couldn’t take me away, I had a sweater to finish first!

Chemo made time slow horribly down. If I had something to work on, my day felt like it went by marginally faster. I would wake up at 5:30 am from a fitful night’s rest and just knit until the sun rose. If I had something to make, I could say that I did more than just lay in a hospital bed hooked up to an IV. My good days were ones where I knitted endlessly. My bad days were marked by stitches rather than inches.


Stabbing my knitting needles through the yarn became my rosary. The rhythmic click became at once soothing and my fight song. I would knit to examine my feelings and to gain distance from them. It was impossible to knit and cry simultaneously so I chose to knit. My world was suddenly much uglier and angry but now I had a way to bring some color and beauty into it.
Knitting helped to remind me that I had a modicum of control in the world and that I could grow something pleasurable. Every day that I made a stitch was a day that I brought beauty into my world even if my hands were numb.

The drive to create also became a beacon of hope. It was a reason to keep going through chemo. I had still many more yards to knit. And I still do. There’s still more beauty for me to knit, if cancer didn’t stop that, nothing else will. I am a knitter, I can do anything.

Vanessa is a martial artist, crafter and blogger living in Minneapolis Minnesota. While she doesn’t knit as much as she did, she keeps her hands busy by making plush internal organs for Survival Organs. You read more about her adventures in survivorship at Mixed Martial Arts and Crafts.