Welcome Mary!

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 Mary!

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Mary was diagnosed with advanced interstitial cystitis in 2006 and pheochromocytoma not long thereafter.  She is a graduate student pursuing her Master of Public Health (MPH) with a focus on health policy and management.  One of Mary’s passions is helping college and university students obtain and utilize the disability services they need to be successful.  She enjoys spending time with her family, reading, and snuggling with her cat Tresor, one her family’s six cats.

Part 2 of YSC’s Shady Pink Elephant End of Life Series

end of life

Part One of Young Survival Coalition’s Pink Elephant End of Life series was wonderful.  The conversation was enlightened and captivating while offering down to earth and relevant information.  If you missed the live streaming event you can watch it all via youtube, anytime you want!

If you watched the event and want to share what impact it had on your own planning, let us know!

Part Two of the series has been scheduled for January 13th at 9 pm EST and will be a lively discussion with Michael Hebb, founder of Death over Dinner.  Find out more about the free, live streaming event by going here.  Young Survival Coalition has worked hard to put on a meaningful and enriching series and you will not be disappointed.

These end of life discussions are important to have even before we feel the end of our life approaching.  Young Survival Coalition’s End of Life series can help you figure out what information you need, who you will want to include, and how to go about planning for everything in an easy to digest live streaming format.  Check out Part One if you missed it and sign up for Part Two today!

Did you check out the first part of the End of Life series?  What do you think about the speakers and topics so far?

Tips For When You Don’t Know What To Say

when you don't know what to say

This summer I was on a trip with friends and developed a sinus infection and pink eye.  I found myself near the end of my trip, in an optometrist’s office getting an eye exam.  The woman taking down my information told me that her sister also had Hodgkin’s Lymphoma.  I responded with silence.  Don’t get me wrong.  I said “hmmm” is an affirming way, and nodded lovingly but then I said, nothing.  My silence did nothing to validate her feelings about her sister’s illness or try to connect with her in any other way.  I didn’t know what to say but then I made the mistake of not saying anything.

When you don’t know what to say, saying nothing is not an option.

Here are some tips for when you don’t know what to say:

[list type=”like”]
[list_item]hold and sit with what you were told[/list_item]
[list_item]don’t try to fix it[/list_item]
[list_item]don’t shrug it off or minimize it in any way[/list_item]
[list_item]don’t compare it to what you think is a similar personal story[/list_item]
[list_item]nod[/list_item]
[list_item]say you’re sorry[/list_item]
[list_item]affirm that what they experienced is hard[/list_item]
[list_item]let them keep talking or let them change the subject[/list_item]
[/list]

That’s it!  You don’t have to strategize on how to fix the situation and you don’t have to try and make them feel better.  You just have to hold what you’ve heard, nod, and validate that life is difficult sometimes.

What tips do you use when you don’t know what to say?

A New Way Of Making New Year’s Resolutions

setting new years resolutions

The practice of setting resolutions for the New Year dates back hundreds of years.  The New Year brings the promise of new beginnings, a chance to change and evolve into the coming year.  These resolutions seem like such a good idea when we first list them out…and then weeks go by without little or no progress.

The problem is that every year, we tend to focus on the things that we feel we *should* be doing and set those items as our resolutions.  We list those goals and we continue through the New Year on our merry way without much thought to how we want to accomplish each goal.

This year, instead of focusing on those things we *should* be doing, think about where you’d like to be in the coming year and divide that into measurable tasks and goals.  By focusing on a direction you’d like your life to take, you can easily break it up into achievable goals and hold onto that motivation for longer.  For instance, one of my New Year’s resolutions could be get into better shape,  but three days after the New Year celebrations have come and gone, I will inevitably end up wondering how do I get into better shape?… and then I’ll probably lose interest.

Instead, I can decide that this next year, I want to make healthier decisions.  That is the overall direction that can then be used to set my New Year’s resolutions…I want to have one green smoothie every day, do a workout class a week, and run/bike at least 3 times every week.  Instead of an ambiguous thing I think I should do, I decide where I’d like to be going in the next year.  You can pick more than one overall direction and you can have as many or as few resolutions (actual goals) for each.  The world is your oyster!

Having resolutions as a survivor or caregiver helps us take control over our lives.  They help us reshape our reality into one of our choosing…instead of one that cancer or illness have shaped for us.

How do you go about setting new years resolutions?

Death Over Dinner

planning end of life

How we want to die and what happens after we have, is one of the biggest conversations that we aren’t having.  Deciding end of life is a crucial part of our healthcare survivorship plans as well as our lives as human beings.  Whether you are close to the end of your life or not, leaving end of life decisions up until it is too late costs us control over an important time in our lives.

Where would you like to die?  Who do you want to write your obituary?  How do you want your family and friends to celebrate your life?  What would you like to happen to your body once you’ve died?  How would you like your belongings and wealth to be distributed?

Each of these decisions require love, attention, and care to sift through.  Each is a personal decision, better made by you than by any one else.  Starting these conversations can be difficult though, in a society that shies away from conversations about death and planning end of life.

Death Over Dinner helps to solve this problem.  An informative and interactive website, the interface takes you through the steps of planning a dinner party where you talk about end of life, death and dying.  The site allows you to consider who you invite, how you discuss the weighty topics at hand, and guides you towards resources to do just that.

“We have gathered dozens of medical and wellness leaders to cast an unflinching eye at end of life, and we have created an uplifting interactive adventure that transforms this seemingly difficult conversation into one of deep engagement, insight and empowerment. We invite you to gather friends and family and fill a table. “

Have you spent any time planning end of life?  Would Death Over Dinner help you initiate these crucial conversations?

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Today I Think Of Her

There are two days every year when I write about my mother, on her birthday and wedding anniversary, and on the day that she died.  So many things have happened since she left.  I often think that I need to call her only to remember that I cannot do that right now.  Such is life after death.

Arromanche2 2001Before my mother died, my family had very few conversations about her last wishes.  I ended up writing her obituary because I like to write and it felt like the thing to do.  We planned a memorial service instead of a funeral because that also seemed like what she might have wanted.  What about her belongings?  What about the who to invite and what we should say?

I knew that she did not want an open casket and that she wanted her ashes to be sprinkled into a body of water because of a conversation that I had with my mother years prior to her cancer diagnosis.  She once told me that I could speak with her from anywhere I wanted…no need to find a tombstone.  This is often an important piece of info that I hold onto.  Still, with such little conversation accomplished ahead of time, when my mother died, my dad and I were bombarded with a million things to figure out and plan…and often without the informed voice of the person who mattered most, my mom.

Tomorrow we will introduce you to a great organization that is helping to alleviate this lack of end of life planning.  While I am happy with how we said goodbye to my mother, I still think often of the many conversations that I wish we had had together.

Free Headspace Guided Meditation For An Entire Year!

free guided meditation

We are all out of subscriptions!  Thank you to everyone who signed up!

Are you a young adult cancer survivor or caregiver?  Interested in meditation but having trouble sticking to it?  Interested in meditation and not sure where to start?  Loving guided meditation and looking for more?

If any of these describe you, we can help!

Lacuna Loft has partnered with Headspace through their Get Some/ Give Some program! As a program participant of Lacuna Loft, we are happy to offer you a free, year long subscription to their guided mindful meditation from your computer or smartphone!

How do you get your free subscription?   Fill out the form below and within a few days we’ll email you the code to get started!  This code is exclusively for Lacuna Loft.  I don’t know about you all, but I am eager to get started!

We are all out of subscriptions!  Thank you to everyone who signed up!

Are you a young adult cancer survivor or caregiver?  Interested in meditation but having trouble sticking to it?  Interested in meditation and not sure where to start?  Loving guided meditation and looking for more?

More info on the wonderfulness that is Headspace…

Headspace provides a course of guided mindful meditation via your smartphone or computer, starting with bite-sized 10 minutes sessions. A new study published by The Journal of Medical Internet Research ranked Headspace as the top mindfulness app. Just 10 day’s practice has been shown to have wide-ranging benefits, from improving sleep and relationships to reducing anxiety and stress. See ‘How it Works’ animation for a little intro, our online Science ebook for a summary of the potential benefits, and Andy Puddicombe’s Ted Talk.

We have 3.5 million users now and subscriptions cost $155/year. To help fulfill our mission of improving the health and happiness of the world, our Get Some / Give Some program donates free subscriptions to nonprofit partners for use by their staff, volunteers, and people they support.

Enjoy!  Let us know how you like your free guided meditation from Headspace!

Lidocaine Nasal Drops for Migraine Treatment

migraine treatment

Earlier this year I wrote about intranasal nerve blocks for migraine treatment, a newly-FDA-approved treatment.  At a recent appointment with my neurologist, I asked about it.  My doctor doesn’t recommend it for me, but he does recommend a lower tech version (one I referenced in my initial post).  Instead of lidocaine applied via camera-guided catheter to a bundle of nerves deep in the sinuses, he prescribed me a 4% lidocaine solution and gave me a nasal dropper.  When I get a migraine, I am supposed to lie down on my back, on my bed, with my head hanging off the end.  Then I dispense several drops of lidocaine – the angle of my head will allow the lidocaine to flow back and anesthetize the ganglion block.

My neurologist expects that these nasal drops will significantly improve my migraine pain, although he’s not sure whether they’ll be effective on my other symptoms, like nausea and photosensitivity.  But I have my drops waiting by my bedside table now, waiting for my next migraine to hit.  I hope this works!

Have you ever asked about a treatment and had a lower tech or less invasive version recommended, either for medical reasons or because insurance wouldn’t cover the more involved treatment?  Have any LL readers tried lidocaine treatments for their migraines?  While I wait to see how these drops work for me, I’d love to hear how they’ve worked for you.

image via

Partnering With Friends To Maintain Motivation

how to maintain motivation

According to my neurologist, migraines respond well to structure.  That means I’m supposed to keep a regular sleeping and eating schedule, and also exercise daily.  The latter is particularly unappealing on my bad days, which is why I enlisted some friends as exercise buddies.  They hold me accountable, making sure I get out for a jog or a brisk walk every day, without fail.  If I miss a day, I’ll end up with two furry black monsters bouncing off the walls.

While not everyone has, or wants, a pair of rambunctious dogs, the general principle of making a joint commitment with a friend is a great way to increase your motivation and accountability.  When you cancel a workout or a study date, you’re not just canceling on yourself (which is often easy, especially when dealing with fatigue and/or pain), but you’re letting someone else down.  That external force can help keep you on track.

In addition to my canine exercise buddies, I have friends with whom I regularly schedule work sessions and chore days.  It feels a little silly at times, but it definitely helps, so I do it!

Have you ever used this method?  Did it work for you? How to maintain motivation is always challenging.  How do you do it? 

Gluten-Free Berry Lemon Cake

gluten-free recipes

There aren’t any gluten-free (GF) bakeries in my area, which means I am on my own when it comes to GF cakes, pies, and scones.  Fortunately, the internet is full of good gluten-free recipes.  I recently found a recipe from the UK for a raspberry polenta cake; I converted the measurements and adapted it to be nut-free.  The result is delicious – rich without being too heavy, and sweet without being overly so.  I used raspberries when I made it, but I think it would be just as wonderful with any berry (I think I’ll try blueberry next).

IMG_0356

Do you have any favorite gluten-free recipes?  Share them in the comments!

Gluten-free berry lemon cake, adapted from Stevie Parle’s gluten-free raspberry and polenta cake recipe from The Telegraph.

8oz unsalted butter, softened, plus extra for greasing

1 cup sugar

3 eggs

1/2 cup white rice flour

1/2 cup corn meal

1 tsp gluten-free baking powder

1 tsp salt

1/2 tsp lemon extract

6 oz fresh raspberries

1 Tbs confectioner’s sugar, if desired.

Preheat oven to 325F. Grease a 10-inch springform pan.

Beat the butter and sugar until creamy and pale, then beat in eggs one at a time.  Stir in rice flour, corn meal, baking powder, salt, and lemon extract.

Pour half of the batter into the pan, and sprinkle the raspberries evenly on top.  Add the rest of the batter and smooth it over the raspberries, covering them completely.

Bake for 50–60 minutes until golden on top and firm in the middle.  Cool in the pan.  Dust with confectioner’s sugar just before serving, if desired.

Does your long term illness require a gluten-free diet?  What gluten-free recipes do you enjoy?