QuestionThirty – Q30

INTRO: Project Learn-to-Live: my quest to live a fuller life after cancer

Me, Johns Hopkins Sidney Kimmel Cancer Center. Getting ready for a stem cell transplant.

Technically, I’m alive but am I really living?

Me, Johns Hopkins Sidney Kimmel Cancer Center. Getting ready for a stem cell transplant.

Me, April 2012, Johns Hopkins Sidney Kimmel Cancer Center. Getting ready for a stem cell transplant (SCT).

THE INTRODUCTION SECTION

Poofy Pants: "What cat hair?"

Poofy Pants: “What cat hair?”

Three years after my initial cancer diagnosis, my life isn’t all sequined butterflies, unicorns farting rainbows, and discount sashimi. Menopausal sweats, cat hair, naps, and a sink clogged by Fancy Feast fish chunks fill my days. I’m often too tired and in too much pain to venture out of the apartment.

I miss my friends. I miss living a life.

I survived cancer, so why I am still struggling three years later?

Me, April 2014, preparing for SCT.

Me, April 2012, preparing for SCT at Johns Hopkins University Hospital (JHUH).

I owe my family, friends, cats, readers, and all of my supporters and caregivers.

I owe the doctors who saved my life, and the medical support staff who monitored my condition and nursed me back from the grave.

Most of all, I owe it to the friends we’ve recently lost to cancer—Shannon, Jill,  Jorge Reisin, MD, and Toni—to live a better and fuller life.

THE WHAT-THE-HELL-HAPPENED-?: MY CANCER HISTORY SECTION

Me, May 2012, pole dancing in JHUH post-sct.

Me, May 2012, pole dancing in JHUH post-sct.

Here’s the story of how my life came to a standstill:

An undiagnosed disease led to…an undiagnosed autoimmune disease led to…stage 2B Hodgkin’s lymphoma (HL) led to…. primary refractory HL led to….radiation myelitis.

Cancer and cancer treatments left me in shitty shape.

(You can read more about my cancer history in my first ever article as a Huffington Post blogger, “How Cancer Screws Young Adults’ Sex Lives”[woohoo!], or just wait patiently for a future post.)

THE COMPLAINING-AND-SHARING-TMI SECTION

I’m thirty-one years old….

…Radiation damaged my spine—a condition called radiation myelitis—leaving me partially paralyzed below the waist. I’m incontinent, but not in the loose bladder and butthole so-poop-and-pee-just-fall-right-out way, but rather in a literally anal-retentive way…Spaghetti Catheter comparison

…Ditto my bladder and urine retention, so I self-cauterize. It’s like putting a hollow strand of plastic spaghetti into my urethra every few hours. Not as awful as it sounds. BONUS: I can pee standing, which is especially hygienic in places like airport restrooms and Europe…

…unless I drink alcohol, in which case, I tend to pee on myself. Just ask my sister’s new car and my favorite pair of fancy pajama pants (twice)…

…(Fancy pajama pants as bar-wear is the best trend ever in the history of humanity besides slap bracelets)…

…FYI: there’s no such thing as a butt catheter. Unfortunate for me…

…I walk with a cane…

…I can’t feel temperature below the waist. Helpful when submerging in cold oceans. Not helpful when trying to determine progressive stages of hypothermia…

"I Wanna Marry Harry" the best TV show ever made.

“I Wanna Marry Harry” the best TV show ever made.

…My tummy hurts…

…Every morning, because of the pain in my legs, I crawl to the sofa, curl into the fetal position, and wish that I Wanna Marry Harry aired as often as Keeping Up with the Kardashians

…I’m weaning off of narcotic painkillers,[1] even though my doctors don’t have another solution to control the burning/electric sensations in my legs, and the withdrawal headaches feel like someone is scraping out the inside of my skull with a scalpel…

…I am exhausted…

…And now, I’m told that I’m thyroid-damaged from radiation and brain-damaged from chemo, which explains why the fatigue has been getting worse, my boobs and muffin top are getting fluffier, and why I feel like I’m bumbling around in an Industrial Revolution era London fog ….[2]

Statistically speaking, I have less than a 10% chance of surviving for 10 years or more.

But as I said, I’m alive, so that’s good news, and I’m motivated to change because I’m sick of feeling sick.

THE BUT-THERE’S-HOPE SECTION

(Me, Maui, HI) Why can't I walk and poop as well as I surf?

Me, Lauren Sczudlo, Maui, HI. Why can’t I walk and poop as awesomely as I surf? (photo credit: Garret Zallen, MD, co-founder Athletes 4 Cancer; photo editing magic: me, L. Sczudlo)

In April 2014, I learned to surf and stand-up paddle-board (SUP) in Maui, Hawaii. Professional kite boarding instructor Tonia Farman and pediatric surgeon Garret Zallen, MD, founded a program  called Athletes 4 Cancer that empowers young adult cancer survivors by taking them on athletic adventures (for free!). Not only did I discover my talent for floating atop polyurethane covered foam in varying ocean conditions, the week I spent at Athletes 4 Cancer’s Camp Koru was longest time I’ve consistently NOT felt bloated, constipated, nauseous, and debilitated by fatigue.

Campfire at Athletes 4 Cancer’s Camp Koru. (photo credit: Garret Zallen, MD, co-founder Athletes 4 Cancer)

So why was I suddenly able to surf, SUP, and poop (using enemas but still)?

THE MY-SAVIOR but no pressure or anything SECTION

Angela Krause, Mt. Hood, OR.

Angela Krause, Hood River, OR.

Angela Krause[3] is the founder of vitalLife: Fitness and Nutrition.

She is cool in a way that makes you want to Facebook stalk her and–theoretically, of course–search Craigslist for available apartment rentals in Hood River, Oregon where she lives (FYI: there’s only one rental and I call dibs). She’s also a NASM certified personal trainer, nutrition coach, and personal chef, and was our chef at surf camp.

In a rented minivan during a Camp Koru field trip, Angela and I talked about the topics ranging from nutrition and exercise to the ways we can reorganization our lives and accomplish our goals to Cameron Diaz’s quest to save lady pubic hair from evil lasers. Even though she’s in ridiculous shape and knows pretty much everything about nutrition and the body, she isn’t preachy or judge-y or annoying. Plus, she’s funny and self-deprecating. Of course, I developed a total hetero-lady-crush on her and a lady-hard-on for her athletic, outdoorsy life.

I got back home to DC from surf camp totally inspired and empowered but went back to the same eating habits that put my career, social life, friendships, and even romance on hold. Once again, I was full of shit. Literally.

I realized that the nutritional and somehow super delicious meals that Angela made for us at Camp Koru, had energized me and coaxed inner movements in ways that exercise, gluten-free and other dieting, therapy, socializing, sleeping, whining, and toilet yoga did not.

I need Angela’s help! She agrees.

PROJECT LEARN TO LIVE

My ultimate goals: full life, empty bowels (and to never go bleach blond again).

My ultimate goals: full life, empty bowels (and to never go bleach blond again)…Can you spot Stinky Pants (cat)?

Angela and I talk on the phone weekly and email almost everyday. She helps me set realistic goals and adjusts my program. With Angela’s guidance, menus, shopping lists, recipes, and more, I’m relearning how to eat and, most importantly, how to live.

So far, I’ve managed to stock the shelves and fridge with nuts, seeds, fruits, and vegetables from Trader Joe’s, and spent a lot of time thinking about how I should really start making smoothies for breakfast.

Over the next eight weeks, I’ll post as often about my adventure with Captain Awesome Angela who is sailing this Q30 pirate-hooker/cat-lady to the island of better eating habits, consistent exercise, efficient time management, and general well-being.

Please read, comment, question, and join me on this journey.

Love and Smooches, XO

Lauren Sczudlo[4]

Angela and some dude: life-fixing in action!

Angela and some dude: life-fixing in action!

P.S. Want to hire Angela to heal your body and help you live a fuller life too? Click here or contact Angela Krause: angela.vitallife@gmail.com Tel: 503.869.5233.

[1] No, you may not have a painkiller. Even my reduced dosage would literally kill you.

[2] Should Paul and I move to London? I think I hate it there but I’m not sure.

[3] Angela Krause,vitalLife, LLC:

  • NASM Certified Personal Trainer
  • Fitness and Nutrition Consultant
  • Nesta Fitness Nutrition Coach
  • AFAA Group Fitness Instructor
  • Schwinn Cycle Instructor
  • Personal Chef

Portland – Hood River, Oregon. www.vitallifefitnessandnutrition.com

[4] Pronounced: Skud-low. Yes, that’s my last name.

 

                           

About author View all posts

Lauren Sczudlo

am a 30-year-old nap enthusiast, former high school English teacher, world traveling vineyard laborer, and picture book librarian, pursuing her life-long dream of being a ‘real’ writer.

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