I Don’t Cherish Every Minute

cancer survivorship

It’s a cliché, I think, that cancer gives you a new outlook on life, a renewed appreciation for each day. Inspirational memes about making each moment count abound.

But just because they’re clichés doesn’t make them false. It turns out that facing your own mortality, and all the dark days that are often a part of it, can help create the contrast that makes so many other days so bright.

Getting thyroid cancer – twice – did change my lens on life. When my cancer recurred, I promised my husband over dinner while on a quick pre-treatment getaway that I’d work less at a job where the hours were too long and the environment too toxic – and I did. (And then I found a new job, where I don’t have to fight so hard to work normal hours and I don’t carry anxiety home in my tote bag.)

I took steps to tune in to the good. I practiced gratitude, writing lists of things I was thankful for every day. I got high on the endorphins that running brings. I cooked good food and drank good wine.

But cherish every minute, and make the most of every day? Nope. Not while I was in active treatment, and not today, years later. That’s a lot to ask of a person, and a lot of time to be “on.” It’s a standard I can’t meet. I had cancer, but I’m no Pollyanna.

Because some days I just want to veg out. I want to hang out in sweatpants and watch too much TV and eat food that’s not particularly good for me. They’re days that I know I won’t have much to show for. I won’t have made the most of every minute.

And then there are the less-than-good days — the days where I’ve slept little the night before, where my patience wears thin, where the food spills on the floor AGAIN. They’re the days when nitpicking replaces gratitude, when I’m too short with everyone in my house, when I yell too much. Rather than cherishing them, they’re the days that I’d just as soon forget.

Sometimes I feel guilty when I hear someone say that cancer has made them grateful for every minute. I’m happy for them, and puzzled for myself. What’s wrong with me that cancer didn’t leave infinite patience and grace in the place of my now-missing thyroid? That I continue to get annoyed in traffic and sigh in long lines, and yes, even still sweat the small stuff?

And then I cut myself some slack. I remind myself that I wasn’t perfect before cancer, and I’m not perfect now. And I try to remember, after I watch some mindless TV, to write a few good things in my gratitude journal.

How do you live through your young adult cancer survivorship?

Have A Pink Weekend

Young Survival Coalition Summit

I’m in Atlanta this weekend for the Young Survival Coalition Summit 2016!  I’m really excited to sport my Lacuna Loft gear, meet a bunch of young courageous women, and to spread the word on Lacuna Loft’s wonderful age-appropriate wellness resources!  Follow along my weekend on instagram!  In honor of the YSC Summit, here are some breast cancer specific resources for your weekend!

Here are some pink weekend links from around the interwebs…

[list type=”like”]
[list_item]Young Survival Coalition[/list_item]
[list_item]Pink Ink Fund[/list_item]
[list_item]Pink Ribbon Girls[/list_item]
[list_item]Feel Your Boobies[/list_item]
[list_item]#FeelItOnTheFirst[/list_item]
[list_item]Metastatic Breast Cancer Network[/list_item]
[list_item]Bright Pink[/list_item]
[/list]

Have a pink weekend Lacuna Lofties!

P.S.  did we mention free Headspace subscriptions? + Lacuna Loft’s new online, creative writing group!

Today I Am – Caregiving For Me

In the land of illness, cancer survivorship, and being a caregiver, some days are better than others.  How we care for ourselves is important.  My most recent article with the Cancer Knowledge Network focuses on all of the feelings that can come with survivorship and caregiving … and how through it all, the one constant is *you.*  You can make all the difference for you, whether you enjoy your current set of emotions or not.

There isn’t always a silver lining and there isn’t always a happy ending, but through it all, there is me.

You can read the whole article here!  Self-care isn’t always easy but it is always necessary.

Book Club: Everything Changes, Chapter 4

Welcome to the comments and discussion of Chapter 4: Human Spectacles of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: RamenonmicsChapter 2: When G-d Things Happen to Sick People, and Chapter 3: Single.

Let’s get started!  Chapter 4!

Carly:

Everyone typically has that one person (or more if they are lucky!) in his or her life that tells you straight. When you look like hell, need a reality check, or cut your bangs too short. I think (hope) I was that person for my aunt. When she was sick with C and preparing herself for and thinking through next steps, I was always open and honest with her. I feel like she appreciated that. I appreciated it. It allowed me to help her in ways that others couldn’t. It allowed us to have special moments together, moments I’ll forever cherish.

Amilca’s brother saved her life through a stem cell donation. My next thought: What’s it like to donate stem cells? The American Cancer Society has some good info.

“Facing death is the most painful thing I’ve had to go through, but it is the greatest gift I have ever been given.” – Amilca

No one enjoys the hell that is C. There’s nothing easy about it – for you or your caregivers. Even strangers have a hell of a time dealing with it. But do you learn a lot? You learn everything.

Thanks for joining us for our Chapter 4: Human Spectacles of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 5: Malignant and Indignant.

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!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Have A Speedy Weekend

I’m in Napa this weekend for the Napa Marathon.  Anyone out there who follows me on instagram has seen more and more pictures of scenery from runs or pictures of my shoes…with the definite constant stream of doggie pictures too.  I’m a little nervous but this is how I #getbusyliving post-cancer so I’m going to give it my best shot!

Here are some speedy weekend links from around the interwebs…

[list type=”like”]
[list_item]15 Fastest Things In The Universe[/list_item]
[list_item]how to run faster[/list_item]
[list_item]a superhero feed![/list_item]
[list_item]cheetahs[/list_item]
[list_item]Want to connect with other young adult cancer or chronic illness peers? From your own home? Join our writing group!  Forming now![/list_item]
[list_item]needing a writing activity you can do in your own time?  sign up for our journaling prompts[/list_item]
[list_item]book club is going well! join in on the fun![/list_item]
[/list]

Have a speedy weekend Lacuna Lofties!

P.S.  did we mention free Headspace subscriptions?

Book Club: Everything Changes, Chapter 3

young adult cancer book club

Welcome to the comments and discussion of Chapter 3: Single of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: Ramenonmics and Chapter 2: When G-d Things Happen to Sick People.

Let’s get started!  Chapter 3!

Carly:

A few things really stuck out to me in this chapter…

Memories

Post C world, there are some things you just forget about. It’s hard to remember all your feelings and experiences when healthy, let alone while being sick. Many things can jog your memory – a place, person, conversation, perhaps even a smell.

A few weeks back, I had a MRI for some lower back pain and when I was getting scanned (holding still, trying not to move or breathe too hard – I didn’t want to be in there any longer than I had to, even with a towel over my face), my body was numb and the memories came back quickly. It left a pit in my stomach. I couldn’t get out fast enough. When I walked through the double doors and saw my mom, it was a huge sigh of relief and comfort.

Side note: scanxiety is a real thing. Here are some tips on how to cope from Stupid Cancer.

“Being strong is not just about being inspirational or having your shit together. It’s about being able to freak out, too, so long as you don’t get stuck there.”

It is sometimes weird to hear others call you brave or strong for having had C. I didn’t feel strong when crying to my parents or not being able to hold my shit together before an appointment with my oncologist. I didn’t feel inspirational when I couldn’t look at my siblings without breaking down.

But as Wafa’a said, you can’t get stuck there. You have to keep focused, fight, talk it out (to whoever that might be), scream, cry, take a walk. Do whatever is needed to get out of the rut. Learning how to not get stuck while going through C will pay off later on.

“Cancer has made me so real. I feel like I’m so raw, there’s no time for bullshit.”

No time for BS. C taught me that. Say what you mean, mean what you say. Don’t hold back.

Side note: it’s good to remember this with strangers. As you can’t judge a book by its cover, you don’t know why people are raw. Appreciate and embrace it.

Mallory:

One of my favorite aspects of this book is how wonderfully the personal dialogues are mixed into each chapter along with a great resource section.  This chapter had great resources focused on dating, cancer sex ed, body image, and relationships.  Sex, dating, intimacy…these are all charged topics among young adults anyway, without cancer being a part of the equation!  “Don’t feel like a freak” as the author wonderfully puts it, be nice to yourself, and ask questions!  If your doctor doesn’t bring up a specific dating or sex topic but you have questions, ask them!  You are never going to shock them with something you want to know more about.

Thanks for joining us for our Chapter 3: Single of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 4: Human Spectacles.

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!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Have A Satisfying Weekend

Spring is in the air around my  neck of the woods!  How are you all doing?

Here are some satisfying weekend links from around the interwebs…

[list type=”like”]
[list_item]a breast cancer survivor walks 1000 miles[/list_item]
[list_item]dream of owning a book shop?  there’s a vacation for that![/list_item]
[list_item]i am enough[/list_item]
[list_item]the power of your passport[/list_item]
[list_item]what nutritionists order at popular chain restaurants[/list_item]
[list_item]the most dog friendly office[/list_item]
[list_item]10 behaviors of genuine people[/list_item]
[/list]

Have a satisfying weekend Lacuna Lofties!

P.S.  did we mention free Headspace subscriptions?

A Young Adult Cancer & Chronic Illness Writing Group!

writing group

Lacuna Loft is incredibly excited to introduce you to a new program that is starting here in mid-March called Unspoken Ink! Unspoken Ink is a creative writing group, designed to help address issues that transport us from initial diagnosis into the new normal and survivorship. The group will consist of 8-10 people, and will meet over 10 weeks for 2 hours each week over google hangout video chat.

If you’re interested in joining us, read more below and fill out the form!  Our Spring Session is forming now!

For the Spring Session of Unspoken Ink, we will be forming a group of 8-10 survivors. Caregiver groups will start slightly later in the year. If you are not able to attend the Spring Session for any reason (you’re a caregiver, the group was full already, the time didn’t work for your availability, etc.) please fill out the form anyway and we’ll put you on the list for future writing groups!


Welcome to the Unspoken Ink writing group! Jen and Mallory are so excited that you are considering joining us!

This group is designed to take you on a journey through your cancer or chronic illness diagnosis and into your survivorship with a small group of your young adult cancer/illness survivor peers. Each 10-week program consists of a weekly writing session attended via google video hangout. We will get to know one another in an intimate, 8-10 person setting and address issues that transport us from initial diagnosis into the new normal and survivorship.

The Unspoken Ink writing group uses a creative writing method (Amherst Writing and Artists (AWA) Method) wherein the facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Hearing your own story and hearing someone else’s teaches us all so much about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what do we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.

Sometimes the prompts are about cancer/illness, sometimes indirectly related to cancer/illness, and sometimes not about cancer/illness at all. Above all, the writing program emphasizes that we are more than a diagnosis.

Our Spring writing group is forming soon!

Some logistics:
– The writing group meets for 2 hours each week, for a period of 10 weeks. A commitment to attend each week is important to group continuity and in creating a safe space. Please be on time. The group will begin in mid-March with a TBD meeting time.
– Each participant will receive a name@LacunaLoft-writinggroup.org email address to use when attending each writing group session. At this email address, you will receive a weekly invitation to a google video hangout where the writing group session will take place. These email addresses will help preserve individual privacy if desired and will make meeting as a group via video hangout easier.
– Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

Book Club: Everything Changes, Chapter 2

Welcome to the comments and discussion of Chapter 2: When G-d Things Happen to Sick People of the book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Catch up on Chapter 1: Ramenonmics!

Let’s get started!  Chapter 2!

Carly:

I thought this chapter really hit home the struggles of understanding what you want for yourself, what you expect of others, and thinking about your future. I can certainly relate to Sheila in her explanation of not knowing what she wants from people. You appreciate their support, but don’t want them to be sad around you or overbearing. You don’t want to hide what’s going on or people to think you want sympathy, but you feel awkward not saying anything at all. You want to not think about cancer 24/7, but it sometimes just consumes you.

I can also appreciate her not wanting to wear the Survivor shirt. I’ve also participated in various conferences and events where you’re treated like a rock star for having had cancer. And sure, the support is nice. For some, their history with cancer is painful and long, and they don’t want to wear a crown or ribbon.

I appreciated Sheila’s decision to stay where she was and not return to Boston. I can’t image it would be easy to take on C in a new place. Then again, maybe that’s just what she needed.

As for thinking about long-term goals, C changes everything. It certainly did for me. When I was younger and someone would ask where I saw myself in 5 years, I’d answer with something career-oriented. When people ask me now, I say, “Happy, healthy, alive, and around my friends and family.” And that’s the truth.

Thanks for joining us for our Chapter 2: When G-d Things Happen to Sick People  of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 3: Single.

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!  Also, there will probably be spoilers.  Read along with us!

How are you enjoying our young adult cancer book club?

Book Club: Everything Changes, Chapter 1

young adult cancer book club

The time has come!  Our second young adult cancer book club has begun of Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s by Kairol Rosenthal!  A huge shout out to Ms. Rosenthal for all of the help she provided with the purchase of these books as well as the special touch she added to each one!

A bit of logistics before we start:  If you are just getting on board, are interested in reading Everything Changes: The Insider’s Guide to Cancer in Your 20’s and 30’s along with us, and are also interested in having your thoughts and comments on each chapter published here on Lacuna Loft, email me at mallory@lacunaloft.org!  If you would like to read along with us, Lacuna Loft is offering a free book to 20 survivors or caregivers.  To get your free book (I have just a few left!), email info@lacunaloft.org with your name, mailing address, and a little bit about yourself.

Ok, the last of the logistics from me: 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!  Also, there will probably be spoilers.  Read along with us!

Let’s get started!  Chapter 1: Ramenomics!

Carly:

Intro – Only a few pages through the introduction, a few words really stick out – life sometimes sucks. And when the sucky parts of life include health issues, life really sucks.

I was one told, “If you have your health, you have everything.” That always stuck with me. Throughout the years, I’ve really fallen back on that conversation. Sure, a shitty co-worker, breakup, or dead car battery can suck. But those things don’t come close to any health-related issues you, your friends, or family may have. Ever.

Chapter 1- I can certainly relate with Nora when she describes the call to tell her mom as “probably the worst part of the entire cancer experience.” Even to this day, I don’t remember the details about the physical pain much. Sure, I had it. But it doesn’t stick out to me in my mind like when I had to call my parents (out of town with all my siblings for a sports tournament) and tell them the news. I remember the conversation like it was yesterday and it still makes me sick to my stomach.

My blood boils when reading about how Nora was treated by the state and her healthcare professionals – a common story I hear way too often: young, educated, hard-working adults essentially being punished because they get sick. It’s total bullshit. At a time when you are doing everything to survive, the “system” is working against you and making it harder to focus on what’s really important – surviving.

Mary:

This chapter focuses on health insurance and access to healthcare. Nora had great difficulty accessing health care in the US because her mother dropped Nora from her health insurance. With the implementation of ObamaCare (the Affordable Care Act) in the US, children are permitted to stay on their parent’s health insurance until their 26th birthday. I dreaded my 26th birthday. The possibility of losing my health insurance was the absolute worst birthday present ever. For the past ten years, my medical costs have exceeded one million dollars a year and insurance has paid for most of it. Luckily for me, my parent’s health insurance has a provision where children incapable of self-support may remain on their parent’s insurance until they either become self-supporting or die. My family knew I qualified for this provision and we started working on getting my exemption approved before my 24th birthday. Three months before my 26th birthday we were still waiting for the approval of my lifetime insurance extension. I did qualify for Medicaid, but like Nora, we knew Medicaid would not pay for almost all of the medications I take and only one of my physicians would accept it. I got the best birthday present any chronically ill young adult could ever want: lifetime health insurance. Getting that approval was better than getting a car or a house for my birthday because I knew without it, I would be homeless trying to pay for my medical bills.

Thanks for joining us for our Chapter 1: Ramenomics of Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s!  Join in next Monday for Chapter 2: When G-d Things Happen to Sick 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.  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?