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?

Part Of My Story Belongs To My Mother

Recently, a new friend of mine asked me about my story…about my mother’s death and about my own cancer diagnosis.  While seated at my lovely friend’s dining room table, all the time hand sewing a gift for my grandmother, I told the cliff notes version of my mother’s diagnosis, treatments, and death…followed ultimately two months later by my own Valentine’s Day biopsy surgery and my own diagnosis.

I cried….but I did not fully enter that space either.  That space of sorrow and loss still feels like such a black hole of grief and pain.  So much still feels missing from my life since my mother left.

I wish that my mother could see what I have tried to build here…what Lacuna Loft has come to mean to me.  At the same time, without my mother’s death I’m not sure Lacuna Loft would have come to be.  It is intriguing to me how these things in life evolve.  How rebirth can come out of such loss and sadness.

Setting Winter Goals

setting winter goals

While the weather this past weekend (in my neck of the woods) was unseasonably warm, winter is definitely back.  The days are shorter, the trees are nearly bare, and holiday lights are starting to appear on trees and houses.

Setting goals, whether you are dealing with a long term illness, caregiving for a loved one, or dealing with cancer is a healthy way to evaluate the small things you can do to improve your day-to-day life.  Did you all set some fall goals?  Have you revisited them and decided to set winter goals too?

When I first talked about my goals for the summer, and then my goals for the fall, I had visions of daily walks where I didn’t need to force myself out the door, dinners filled with enticing and wonderfully healthy vegetables, meditation expanding my mind’s eye, and so much more.  Now that fall has come and almost gone, it is time to look at those goals, decide how well they were accomplished, and to readjust for the coming new season.

Mallory’s Goals for the Fall were…

[list type=”like”]
[list_item]take more real pictures.[/list_item]
UPDATE:  Nope…did not do this at all.  My camera is finally sitting on a counter in the living room…maybe that will help get things rolling?
[list_item]bake yummy things.[/list_item]
UPDATE:  While I specifically wanted to make macaroons and didn’t, I made so many new baked goodies this fall!  I baked apple pies and pumpkin pies with a friend for Thanksgiving (did I mention that the crusts were homemade too?), cooked homemade banana cream pudding (maybe not a baked item but I’m counting it!), and more!
apple_pie

[list_item]continue growing Lacuna Loft.[/list_item]
UPDATE:  Check!  I went to the 2014 Critical Mass Conference, have continued meeting and networking with a great group of cancer advocates and resource centers, and we made the decision to file for non-profit status.  Whew!
[list_item]eat lots of different vegetables.[/list_item]
UPDATE:  Check!  Sweet potatoes, carrots, broccoli, oh my!  I’ve learned that the key to eating vegetables is buying vegetables 🙂  If I have a veggie to easily grab and snack on, I’m more likely to choose a veggie over that piece of chocolate!  I’ve also become crafty about sneaking vegetables into meals (has anyone else successfully put peas in mac-n-cheese?  so good!)
[list_item]take a dog walk everyday.[/list_item]
UPDATE:  Check!  While there were weeks when this happened every day and weeks when this happened every other day, I’m going to consider it a win.
[list_item]explore meditation.[/list_item]
UPDATE:  Well…I started going to yoga at least once a week but I think meditation is still on the list of to-trys.
[list_item]start training for a race.[/list_item]
UPDATE:  I have not started training for a race…but I’ve started running again!  Does that count?  🙂
[list_item]go camping.[/list_item]
UPDATE:  I went backyard camping with my family of four!  It was really fun to spend a night outside, right before the cold weather really set in, and to test the 2 pups in a very small tent 🙂
[/list]

Ok!  Time for setting winter goals!

Mallory’s Winter Goals!:

[list type=”like”]
[list_item]take more real pictures.[/list_item]
Yep…I want to do this on a weekly basis.
[list_item]bake yummy things.[/list_item]
I (STILL!) specifically want to make some macaroons!
[list_item]continue growing Lacuna Loft.[/list_item]
This will keep being a primary goal of mine.  We are applying for non-profit status, forming a board, and starting to set a planning strategy for the next few years…this winter is going to be great!
[list_item]move every day.[/list_item]
Dog walks, dog runs, yoga, swimming, you name it.  I want to stop working and make some space to sweat and move every day.
[list_item]eat fewer sweets.[/list_item]
I love sugar…donuts, pies, chocolate, the list goes on and on.  With the holidays fast approaching, I want to make healthy decisions as often as possible 🙂
[list_item]explore meditation.[/list_item]
Yes…I still (STILL!) really really want to try meditation.  Hopefully we will have some posts about it here in the near future.
[list_item]play with my pups.[/list_item]
I often work from home.  While I’m in close proximity to my two lovely doggies, they often sleep most of the day.  My husband is also a work-a-holic.  Time for us all to take a breather and make some space for us…time for us all to play together a bit more each day!
[list_item]hike in the snow.[/list_item]
It has been years since I went hiking in the snow.  (unless you count walking along a beach?)  Time to bundle up, grab the pups and husband, and head out with the first snow!
[list_item]make more things.[/list_item]
My craft list is growing!  I have things I want to make for Christmas presents, wedding presents, household fun, and more.
[/list]

When do you decide to set goals?  Do you set them for a season or for a year?  Setting winter goals is a great way to focus in on a shorter amount of time than new year’s resolutions…especially during the winter months when things can quickly seem dreary in the continual cold!

Welcome Andrea!

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 Andrea!

—
Andrea Ridgard is a 500 Hour Kripalu Yoga Teacher, with a focus on Ayurveda as well as an Ayurvedic Health Counselor. She currently teaches yoga classes and private lessons Ann Arbor, where she is expanding her business to include Ayurevdic Diet & Lifestyle Consultations. Ayurveda is Traditional Indian Medicine. Studying it has led to Andrea initiating several diet and lifestyle changes that have helped her enhance her digestion, readily find calm and ease an anxious mind, and most importantly establish a real sense of self-love. To read more about Ayurveda, visit groundedhere.com/ayurveda

At the beginning of her Yoga teaching career, before she knew anything about Ayurveda, Andrea also spent time cooking for Oncology patients in treatment, delivering warm, home-cooked meals for them and their loved ones. This was a beautiful and trying experience. The knowledge of Ayurveda would have thoroughly enhanced this work, and she is eager to share her insight and collaborate with others in exploring wellness daily for all of us, whether bearing a severe illness, caring for someone who is, or just trying to get through life feeling our whole, true, and healthy selves.

Before teaching yoga, Andrea graduated from the University of Michigan and worked with local grassroots non-profit organizations: The Young People’s Project, Inc. and Tilian Farmer Development Center to organize the community around their missions and create sustainable programming. She continues to be closely tied to this and other meaningful community work. When not practicing or teaching yoga, Andrea enjoys cooking with local ingredients, growing her own food, hiking with her husband and dog, and sharing food with friends and family. She also volunteers with The Agrarian Adventure.

Packing Up Home

About a week ago, I spent a weekend packing up my childhood bedroom.  After finishing with my bedroom, I moved into the rest of the house, packing up things left and right.  I went through a range of emotions during the experience…from frustrated at the painfully slow process of packing up a bedroom that has looked the same since I was 15, to exasperated at how much f***ing stuff can even fit into a child’s bedroom, to astounded at the shear volume of school papers I still possessed in that bedroom, to sad at the realization that I had just spent my last night sleeping in my childhood room, to lonely from having to go through this without my mother, to excited to create new traditions and memories in a brand new house.

For the most part, I think I am happy at the change.  While I spent almost my entire childhood living in that house, my mother also died in there.  As one of her primary caregivers, I have haunting memories of our last days as a family of four (my dad, mom, little brother, and myself).  That house contained our last Christmas all together celebrated early as my mother’s health deteriorated and then, just a few days later, our first Christmas without her.  My family has forged through, attempting to deal with the pain and sadness the winter in this house embodies and I’m looking forward to a new time together in a new place.  Over the weekend I finally felt ready to say goodbye to my mother’s closet full of possessions, although not before loading up a bag full of her things that I wanted to keep.  I’ve replayed memories of our last trip all together, focusing on the fights that my brother and I insisted on having.  While packing up everything, I asked my dad if he remembered anything else from that trip besides the fighting…he told me that he didn’t remember the fighting much at all.  I don’t know why I insist on tormenting myself with all of the times that I wasn’t a good enough daughter to my mother…with all of the times that I didn’t find the right toolset within myself to act in the way that I might now.

I’m not sure how I’ll feel though, coming to visit my dad in a new house where there are no direct memories of my mom…

And then I had a realization.

There is no way for my life to continue without the constant guidance of my mother.  She will always have an impact on where I am and what I’m doing, for new traditions will be forged with her watchful eye constantly on my mind and her love held tightly in my heart.

When to Say When

When we went to St. Louis Children’s Hospital in October 2011 and was told, “Your child has cancer”, naturally, the plan was to fight. To do everything in the doctor’s power to get rid of Sebastian’s cancer. So, that’s what we did, and Bastian was led down a path that consisted of chemo, radiation, bone marrow transplants, pain, nausea, more chemo and more pain. He spent countless days in the hospital, missed out on school and friends and birthday parties and swimming. He lost all of his hair, and a quarter of his body weight. The treatments made him so very sick. And all the while the scans continued to show no disease improvement. The treatments were not working.

In June, the side effects of the chemo and radiation caused him to have to get a urinary catheter due to damage in his bladder. Complications from the catheter landed him in the hospital for 12 days with several infections. Right about the time he was being released from the hospital, his docs gave us the treatment options available for him. After several discussions about what the options are, Sebastian finally tells us, he doesn’t want to do this anymore. He doesn’t want to keep making himself sick. He wants to stop.

Imagine making this decision for yourself, knowing that nothing you do will take your disease away, and everything you are doing is potentially causing more pain and more problems. Would you know when to say when? At some point, the desire for quality over quantity would present itself, and that’s where Bastian is.

We’ve known for a long time that we would be faced with this decision; I just didn’t think that Bastian would be the one to bring it up. The docs told us a long time ago that there is no chance of curing Bastian’s cancer, and that everything we are doing is an attempt to give him more time. After his last stay in the hospital, Bastian said he wanted to spend the rest of his time with the people he loves, not taking things to make himself sicker, and not constantly being hooked up to IV’s. He wants quality over quantity. His decision was not accepted by a lot people in his life, particularly his peers. They don’t understand how “he can just give up”; they think he should try every single thing possible. But those of us close to him know that this isn’t him “giving up” or “choosing to die”, this is him choosing to LIVE.

This is the ultimate act of letting go. Letting him make this decision, and follow through with it, means that we aren’t doing anything to slow his cancer growth, and that he will die from his disease. But letting him make this decision, and follow through with it, means he gets to live the rest of his life on his terms. And that is much more important to us.

Stopping cancer treatments is a difficult and painful decision.  Have you experienced something similar?

End To Summer Goals, Setting Fall Goals

Summer is almost gone and the fall is quickly approaching!  Setting goals, whether you are dealing with a long term illness, caregiving for a loved one, or dealing with cancer is a healthy way to evaluate the small things you can do to improve your day-to-day life.  Did you all set some summer goals?  Have you revisited them and decided to set fall goals too?

When I first talked about my goals for the summer, I had lofty expectations of all of the small changes that I would make to my life that would help to create a grander vision of who I am and who I want to be.  Now that summer has come and almost gone, it is time to look at those goals, decide how well they were accomplished, and to readjust for the coming new season.

Mallory’s Goals for the Summer were…

[list type=”like”]
[list_item]take more real pictures.[/list_item]
UPDATE:  I did this just a little, bitty, bit 🙂  Does that count?  On vacation I spent a single day using my real camera instead of my phone to take pictures.  I think I would like to revisit it in the fall.
[list_item]bake yummy things.[/list_item]
UPDATE:  I definitely made a few new things for dinner (homemade rosemary, macaroni and cheese…yum!) and a handful of fun new ice creams/sorbets.  (I talked about one of those recipes for mango sorbet here).  I even experimented with individual peanut butter brownies.  Macaroons will have to be moved to a fall goal though!
[list_item]continue growing Lacuna Loft.[/list_item]
UPDATE:  Check!  This is an on going process which I took steps at each day of the summer 🙂  On to the fall for even bigger and better things for Lacuna Loft!
[list_item]eat more vegetables.[/list_item]
UPDATE:  I actually became a vegetarian this summer so I think this goal went pretty well 🙂
[list_item]take a dog walk everyday.[/list_item]
UPDATE:  Yea…definitely didn’t do this one 🙁  Brett ran the pups a few times a week and I started swimming and lifting a lot more regularly but I never seemed to figure out how to put a dog walk into my every day routine.  In the past 10 days though, I am 8 for 10!  A dog walk almost each day!
[list_item]explore meditation.[/list_item]
UPDATE:  Nope…I still really want to do this though.
[list_item]have fun.[/list_item]
UPDATE:  Check!  I traveled with my family and with my in-laws this summer and generally tried to practice what we talk about on Lacuna Loft…self-care, self-care, self-care, and have fun!  🙂
[/list]

Ok!  Time for setting fall goals!

Mallory’s Fall Goals!:

[list type=”like”]
[list_item]take more real pictures.[/list_item]
Yep…I want to do this on a weekly basis.
[list_item]bake yummy things.[/list_item]
I specifically want to make some macaroons!
[list_item]continue growing Lacuna Loft.[/list_item]
This will continue to be a goal of mine.  I have some great ideas for new things to add to the site in the coming months.  Lacuna Loft will be at the Critical Mass Conference in November.  If you’re going, let us know!!!  I’m really excited to meet some great people and talk a bunch about Lacuna Loft.  🙂
[list_item]eat lots of different vegetables.[/list_item]
So this may seem a lot like the goal of eating more vegetables that I set for the summer but hear me out.  I have a set of go-to vegetables that I love and am comfortable cooking (and eating).  I’d really like to start cooking more and more with vegetables and diversifying my meals a bit.
[list_item]take a dog walk everyday.[/list_item]
Taking a walk or run with my 2 pups is a big part of my self-care.  Being out and about in the world, with my 2 favorite mutts, brings me out of myself a bit and helps me to stay calm and centered.  Bring on the fall weather!
[list_item]explore meditation.[/list_item]
Yes…I still really really want to try meditation.  Hopefully we will have some posts about it here in the near future.
[list_item]start training for a race.[/list_item]
For the past few years I’ve been running the Chicago Marathon for the American Brain Tumor Association.  This year though, I am in a wedding the night before the race so I won’t be able to participate in the run.  Time to find a new sporting event to train for!
[list_item]go camping.[/list_item]
I love to be outside.  I love hiking, camping, backpacking, climbing, you name it.  I’ve done a couple of long distance treks in my day but I have never gone camping with my husband!  (and he has never gone camping, ever!)  For our wedding, we received most of the needed camping/backpacking gear that I didn’t already own and we still haven’t used it.  This fall is the time!  We’re going to do a practice run in the backyard and then hit a state park for a weekend!  The pups love walking in the woods so I think they’ll enjoy it too!
[/list]

When do you decide to set goals?  Do you set them for a season or for a year?  Setting fall goals is a great way to focus in on a shorter amount of time than new year’s resolutions.  I also find fall goals to help ease the transition from the great summer weather into the cooler fall 🙂

Why And How To Start Journaling

“Journal writing is a voyage to the interior.” -Christina Baldwin

Journaling is a mysterious hobby. I’ve been keeping a journal for years, but I’ve only discussed it with a handful of people- it just doesn’t come up in conversation that often. When someone does discover that I journal, though, they are invariably intrigued. I am asked, “How do you do it?” “When do you find time?” and “Do you have any tips?” However, it’s the unspoken question: “WHY do you keep a journal?” that’s the most meaningful of all.

In the interest of shedding some light on a secretive habit, and hopefully inspiring some of you to give it a try, here are my answers to those questions…

How to start journaling

First, figure out your preferred medium (how you write best). When I started my journals as a teenager, I used big sketchpads and bold markers. (I was inspired by the work of the artist/writer Sark.) I have about 15 of these journals, and I’ve managed to keep them safe and private throughout several location changes. They are a storage issue, though, so I’m grateful that I’m now more comfortable writing on my laptop. I keep a word document called “journal” (original, I know; if you don’t trust your housemates not to snoop, call it “alfalfa pie recipe” or something as unappealing) and start a new file every year.

How to create a journal entry

I like to start with a day/date heading, so that if I choose to look back on previous entries, I can orient myself easily. Other people prefer writing blog-post style, or simply picking up where they left off the day before. It’s your choice.

The biggest potential roadblock to journaling is the dreaded “blank page” syndrome, where you’re sitting there having no idea how to start. You can solve that problem by starting the same way every time, either with a journal prompt (the same one every day, or a variety- Lacuna Loft can help with this); a list, a la Bridget Jones’s Diary; or by cataloging what you did that day. I take the last option, and I’ve never once had to sit and watch the cursor blink. Generally, starting with what I did becomes how I felt about what I did, which leads into deeper topics. If it doesn’t, well, at least I wrote something.

When to journal

This is entirely up to you, of course, but from personal experience I strongly recommend writing every day. Once you skip a day or two, it becomes a lot harder to reestablish the habit. It also helps to write at the same time every day. I like to journal first thing in the morning.

And now the big question:

Why keep a journal?

This is a personal question, and everyone will have a different answer. I don’t mind sharing my reasons, in the hopes that one or more will resonate with you.

1. It keeps me feeling positive and grateful. Like most people, I tend to focus on the negative things that happen to me. Writing about my life gives me instant perspective on my problems. It helps me to remember that when my doctor called with questionable test results, my husband stood there and massaged my shoulders, then offered to get me frozen yogurt. Telling the story of that moment brings the positive memories into greater focus.

2. It helps me release feelings I didn’t know I had. Throughout my teens and twenties, I had a lot of trouble getting in touch with my own feelings. I would act out by overeating or fighting with family, and I would know I was unhappy, but I honestly didn’t know why. Journaling helped put an end to that phase in my life, by giving me time and space to talk about my feelings to the one person who really needed to understand them (me).

3. It’s a great warm-up to the other writing I do. I’m also a musician, and I’m a big believer in a daily warm-up that sets the tone for the practicing my students and I do each day. The same goes for writing. Once I’ve journaled, I feel much more ready to dive into the bigger projects I have scheduled.

4. It documents my memories. I often return to journal entries from meaningful times in my life, such as when my son was born, to remind me what really happened and how I felt about it. It’s also a great resource if my husband and I disagree about when something happened- I can just look it up!

5. Maybe my journals will be a memoir one day. Hey, it could happen!

Best of luck with your journal habit! If you’d like to talk more about journaling, I’d love to hear from you. Please email me at leannesowul@gmail.com, or visit my website, leannesowul.com.

Happy Birthday Mom

Today, my mother would have been 58 years old and my parents would have been married 36 years.  We post a variety of personal stories here on Lacuna Loft, focusing on caregivers, survivors, and fighters.  My mother is a huge part of my personal story even though she wasn’t able to be here during my cancer diagnosis or treatment.  She wasn’t a young adult cancer fighter but she was too young and a cancer fighter all the same…and I was proud to be her caregiver.  I think about her everyday and I miss her.

Family christmas 2008

Steps To Reduce Stress As A Caregiver

I recently read a great article about reducing stress as a caregiver.  In the post, the author discusses, among other things, the importance of learning to channel your stress (since caregiving is an immensely stressful occupation)  and talking to your patient/loved one about what they are wanting out of your care.  

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