Things Are Not Always as They Appear


(Yes, I know it’s long, but I promise it will be worth your time)

I know…
…that surgery and scar on my belly.
…that uncertainty, wondering and wanting.
…that search for the expert and regular trip to New York City.
…that feeling of just not wanting to exist, but to live.
…that desire to have children and not being confident it will happen.
…how to say, fuck it, and keep going when people tell you to slow down.
…wanting to be normal, but also not wanting to be normal.
…the art of balancing cancer treatment and dream chasing.
…wanting to be anxious for something other than cancer.
…rare disease.
…the wait for more research and treatment options.
…getting through and not giving up.

Yes, I know I’m not Gabe or a runner of her caliber. Actually, I wouldn’t even call myself a runner anymore. I don’t personally know Gabe.  I don’t know exactly what she is going through.

But, I do know there is so much I can relate to in her story. And I know there are many out there who can relate. I applaud her openness when it would be so easy to go quietly into treatment. Instead she chose to share and I feel a little less alone and grateful for the stereotype she is shattering.

I also know if you passed her (or I) on the street, you might (incorrectly) assume we are healthy because we are young and fit. Then, once our truth was revealed, you might (incorrectly) assume we should be at home with a scarf covering a bald head, cup of tea in hand, while staring out a window.

Cancer’s teachings are infinite and this documentary of Gabe’s race reinforces a truth I know all to well.  Things are not always as they appear.

 

Gabe Grunewald is a professional runner and an adenoid cystic carcinoma survivor. Follow her on Twitter, Instagram her website.

 

And if you needed more evidence that things are not always as they appear:

 

 


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8 Tips from a Professional Surgery Recoverer

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As featured on curetoday.com

I’m becoming a professional surgery recoverer. It seems like for the last three autumns, I’ve had surgery and spend the season looking at the leaves change through a hospital window or on my slow, prescribed daily walks. I recently read in each person’s life, they will start over many times and I believe whoever came up with this probably had several surgeries.

In my previous life before cancer, I was a marathoner, triathlete and was always trying to push myself to the next level. Going from running 26.2 miles to not being able to walk down a hallway has been a humbling experience.

In September 2014, I had a distal pancreatomy and splenectomy to remove a tumor on my pancreas. In October 2015, I had a liver resection and cholecystectomy to remove tumors in my liver. Then this October was the surprise surgery – a bowel obstruction, which is considered a complication from my liver operation. Something about the body not liking open spaces and my small intestine moving into that space.

Strangely and fortunately, my body seems to recover quite well from these surgeries. Youth and being physically fit are on my side, but I believe more so, it’s the determination and figurative steps I take after each procedure. So, here are a few tips from a professional recoverer on abdominal surgery.

  1. Ask a thousand preoperative questions. What can I expect from my incision? What kind of physical difficulties do patients experience? What should I expect when I wake up? Will there be drains, IVs, tubes? What will we do to manage pain? Will I be closed up with staples or glue? In my experience, surgeries are so routine for surgeons they don’t realize we don’t know these things. Waking up with an unexpected tube up your nose or a larger incision than you thought can be upsetting. Therefore, ask every question that comes to mind. I’ve found connecting with others who have been through the surgery to gather questions can be helpful too.
  2. Lean on your nurses. Can we just take a moment to recognize the awesomeness of nurses? They are the foot soldiers and we and doctors could not do it without them. Most nurses will go to bat for you. If something isn’t working, ask them to advocate to the doctors on your behalf or ask what they recommend. After my first surgery, a nurse recommended a trapeze when I expressed how hard it was getting in and out of bed after having my abdominal muscles cut through.
  3. Walk…..a lot. This is a tough one, but critical on getting yourself discharged. Set some goals. The day after surgery my goal was to walk to the end of the hall and back three times throughout the day. I only made it twice, but the next day I did it four times. I’ve found activity trackers are helpful. I’d set an alarm and try to do a bit more each day. Also, walking is useful in getting your digestive system moving when it’s been put to sleep by pain meds, anaesthesia, surgery and the change in diet.
  4. At Home.  Being confined to a hospital room makes me crazy.  I know I’m not alone when I say how wonderful it is to get home after a stay.  However,  coming home presents a new set of challenges. After getting used to a moveable hospital bed, my stationary bed was tricky. I actually found the couch to be more comfortable. Some people find it easier to sleep in a recliner or gravity chair. Also, if you’ve been sent home with drains, my thoughts are with you. They are annoying. I always safety pinned them to my shirt. Recently, a friend and breast cancer survivor shared a zip up hoody with interior drain pockets. What a revolutionary idea. If something is bothering you at home, don’t just accept it, a quick Google search or call to a nurse could change your world.
  5. Keep walking….a lot.  Your walks are not over now you’ve left the hospital. In fact, this is where you really need to increase your daily steps, endurance and strength now you’re no longer confined to a hallway. Again, the activity tracker is great. The day I came home from the hospital, my goal was to do 1,000 steps. The next day, I went to 1,500. Some days it would take me several outings. A month from surgery, I finally made it to 10,000 steps. Now, I’m working on increasing my endurance by walking for longer stretches of time.
  6. Don’t ignore the mental and emotional.  This is also a hard one. After every procedure, I find myself struggling to regain my ingrained positive attitude. I’ve come to realize a pattern of PTSD (post traumatic stress disorder) after I come home from a surgery. Recognizing this, I’m sure to combat it with extra sessions with my therapist, making plans with friends and planning daily trips out of the house. It’s easy to stay in a mental slump when you’re alone and confined all day, so as painful as it might be, just do don’t do it.
  7. Go to physical therapy. I feel doctors don’t recommend this enough. I went to PT after my first surgery and recovered fast. With my second, I decided to forgo physical therapy. Months post op, I wasn’t as strong and my endurance was nonexistent. I finally submitted to PT and within a few weeks I was back on track. This go around, I cringe at the idea of spending so much time at the therapist’s office, but know it’s the way back. This is also the safest way to regain strength. Attempting on your own could result in hurting yourself with a hernia and what you don’t need after surgery is another surgery. Thanks to physical therapy, 6 months after I completed treatment, I hiked 250 miles across Spain with a backpack. If that’s not a testimonial, I don’t know what is.
  8. Practice gratitude, patience and mindfulness. No matter how major or minor the operation, I notice how much quicker I recover when I give myself a break.  I do this by mentally listing ten things I’m grateful for each day.

So, here I am, a couple months post-op and doing pretty good. I walk for an hour everyday and start physical therapy in the new year. After I get the green light from my therapist, I plan to work my way back up to daily yoga and sign up for a half marathon in the spring. There are survivors out there defying the odds by running marathons, completing ironmans, climbing mountains and biking across countries. These acts inspire people and are proof our bodies are capable of much more than we can even imagine. I’d rather strive to be these people than submit to cancers quest to stop me.

Read all my articles from Cure

Not the End of the World

Eek! I’m so excited – I put an obsessive amount of time and emotional energy into this essay.

 

 

This was published in Vanderbilt University Medical Center’s Momentum Magazine and tells the story of my four year journey to and on the Camino de Santiago.

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Kevin & I at the end of the world

I went to the Camino with a map and a plan to walk alone, but the universe conspired for something better. That something better goes by the name of Kevin Keystone. So, I’ll dedicate this to him and the universe for bringing me the medicine I needed most. My thank yous will be forever immeasurable.

Not the End of the World

To watch Kevin’s take on our voyage together, check out this YouTube video.