Home Sweet Home: Finding Hope Through My Whipple Recovery

We are the architects of our own experience.  What we can control, that should be the focus. 

I felt very out of control.  Having had two surgeries for bile duct obstruction on a Tuesday and the Whipple 3 days later on a Friday, I was emotionally vulnerable and torn.  Lying in the most uncomfortable position in a hospital bed in unbearable pain had left me weak and struggling to find meaning in all of this.  The challenges were all so unexpected, like a storm blew in and left it’s devastation in a most expected manner.  The little I knew about this disease was discouraging.  Learning that 93% of the patients died in the first 12 months of diagnosis was certainly not reassuring.

Creative living is a path for the brave. When courage dies, creativity dies with it.  I have never considered myself an anxious person.  Carefree and fearless, impulsive at times would be more appropriate. I have had many situations where my courage has been severely tested, but I don’t dwell on it.  I move on and consider it a distant memory. I believe fear is a desolate boneyard where dreams dry up. I was determined not to let fear or feelings of hopelessness overcome me.  Removing myself from the hospital environment was the answer, and I was determined to go home on the seventh day after my Whipple surgery. I could not endure another week, let alone another hour.  I was desperate to find an emotion or action I could control.

Emboldened by my success of shuffle-walking all the hospital floors five times a day for the last six days gave me a new sense of confidence.  I was told walking ALL floors of the hospital totaled approximately 10 miles.  I am not showing off my math skills, but subtracting the staff, maintenance, cafeteria, surgery and pediatrics floors, I felt pretty good about completing at least one-third or one-half of that distance! 

Sitting out on the patio on day six, basking in the warm sun, drinking orange juice with my friend Kathi Koll, I commented that I could walk home from here.  I didn’t see any security and our condominium building was in plain view only a few blocks away. Escape was possible!  This made me more determined than ever to go home and start my recovery where I was in control (or so I thought!).  We arranged for a nurse to accompany me home the next day. I was resistant (or independently stubborn!) but agreed to anything that would not delay the departure process. 

Be content with what you have, rejoice in the way things are, when you realize there is nothing lacking, the whole world belongs to you.
— Lao Tzu, Philosopher

When I walked off the elevator into our beautiful condominium, I felt, in that moment, grateful for…being alive, for the loving people surrounding me, for the courage and determination I knew I would summon to overcome this, for the good fortune to be in the care of the best medical team…..nothing was lacking.  It was the most delicious sight -  the sun streaming though the floor length windows in my lovely bedroom with the luxurious, crisp, fresh, embroidered sheets with soft, fluffy pillows awaiting my arrival. 

My nurse was young, professional, beautiful, and most compassionate.  She had a touching earnestness and gave you the impression that nothing would go wrong.  I have never had a nurse and apparently misunderstood our roles!  I familiarized her with our coffee maker and stocked refrigerator, offered her magazines, showed her how to work the remote to view movies, gave her a list of local restaurants with lunch menus for deliveries and showed her the guest room where she could nap.  She said in the sweetest tone, “Laurie, I need to remind you of the nurse/patient relationship.  I am the nurse and you are the patient!”  I put her in a cab a few short hours later with her compensation and my assurance it had nothing to do with her; I really felt capable of taking care of myself and Paul was there if I did need help.

It was up to me to find meaning in all of this.  I was now beginning a trial or journey (however I chose to look at it) of discovery.  Chemotherapy would start in 8 weeks.