Posts tagged Diagnosis
Facing Cancer More Than Once

Alicia has faced cancer more than once. She was diagnosed with Hodgkin's Lymphoma in college and has had to deal with both cancer recurrence and a new diagnosis of breast cancer since. More than half of her life has been colored by cancer. Today, Alicia has become an advocate for others living with cancer, and a voice of inspiration. She is a dynamic and powerful speaker and an excellent storyteller who delivers her message with compassion, wisdom and wit. 

Journeying: Towards Healing, Wholeness, and Authenticity

My mysterious symptoms began when I was 11 years old.  I liked to play soccer, create art projects, and ride bikes with friends to White Hen to buy candy.  I was the student council class president.  I was also as pale as a ghost, barely weighed 70 pounds, and continually missing school because I was sick.  High fevers, headaches, and chills—that was my deal. The pediatrician repeatedly told my parents, not me, that I had the flu.  After almost a year of recurring flu, my parents wondered if I was being misdiagnosed and sought a second opinion.   I remember being nervous as I overheard phone conversations my mom was having, asking friends for pediatrician recommendations, wondering what was wrong with me.

After one visit, this new pediatrician didn’t think I had the flu, admitted he didn’t know what was wrong, suspected migraines, and sent us to an allergist to do sinus testing.  And so my medical journey began.  From specialist to specialist, until an infectious disease physician referred us to a gastroenterologist for a colonoscopy and, there, my atypical presentation of Crohn’s Disease was discovered.  Crohn’s Disease causes inflammation in the lining of the digestive tract, it can be painful and debilitating, and while there are therapies to reduce symptoms, there is no known cure. 

 By the time my Crohn’s was diagnosed, I’d missed a ton of 6th grade and the one month session of overnight camp that I’d already packed my duffle to attend: T-shirts, shorts, sneakers, swimsuits, beach towels, extra long sheets for the bunk beds, tennis racket, cassette player walkman and headphones, berry flavored lip gloss, and carefully selected stationery to write friends and family at home.  I remember the morning of the camp send-off.  It was a warm, clear, sunny day.  I went to breakfast at McDonald’s with my mom, my younger brother, camp friends, and their parents. Then, we all went to the camp bus stop at the local high school.  While my brother and my camp friends loaded the greyhound buses, buzzing with excitement and nervous energy about spending a month away from home, I stayed back with the parents and waved goodbye as they drove away.  Since we were surely going to figure out “what’s wrong” soon, I planned to go to camp late.  I should have known when I started taking out “just one shirt” from the royal blue duffel bag on the hallway floor that I would soon be unpacking the entire bag.  That summer I watched the fun from the sidelines at home.  Through letters from friends, I heard about camp sneak-outs, gross cafeteria food, and which boys the girls liked.

 Twenty-one years later, now 33 years old, I am just beginning to realize the impact living with Crohn’s has had on my life, the force it has been in shaping my identity.  Watching the fun from the sidelines, as I did on that summer day when the camp buses drove off without me, is a metaphor for how I spent a lot of my time growing up.  Beginning at age 12, I needed to take medication three times a day.  Staying healthy meant restrictions in my diet.  No carbonation, no fake sugar, no drinks from a straw, no chewing gum, no popcorn, no greasy food, no, no, no...  Living with Crohn’s meant no drinking, which meant when friends began experimenting with alcohol, guess who was always stone cold sober and, as soon as I turned 16, the perpetual designated driver?  Me.  Then in college, everyone drunk, having fun, enjoying life.  Not me.  All nighters?  I couldn’t do it.  I stayed up most of the night with my boyfriend who was in town during the fall of freshman year and I ended up in the hospital the next day with a high fever and chills. I was left behind when my parents and brothers vacationed in Mexico when I was in college.  They didn’t take me because they didn’t want me to get sick from the food or water. To be fair, my parents planned to travel alone, but my brothers wheedled their way in on the trip.  Even though I asked to join, I was told “no.”

 The thing is, the missed opportunities for fun, the regimented lifestyle, and the premature responsibility, none of that includes the actual medical interventions: The surgeries, hospital visits, blood tests, IVs, colonoscopies, physical exams, medications, allergic reactions to medications, blah, blah, blah…  While I have a difficult time remembering my medical experiences in their entirety, I do remember certain pieces vividly.  I remember being in the hospital, a male African nurse trying unsuccessfully to put an IV in the top of my skinny little left hand.  I was sitting in a chair next to my hospital bed.  He was standing over me in his scrubs.  I felt helpless, paralyzed with pain and terror.  That was probably close to 20 years ago. A million times since then, I’ve been poked, without flinching.   I worked in a Neonatal Intensive Care Unit; I’ve seen blood, guts, vomit, and babies who are no longer living.  Yet, if I’m in a medical setting and hear the voice of a man with an African accent, I stop dead in my tracks and feel like my heart has momentarily stopped beating. 

 In every medical experience since that fateful IV, I plowed ahead—strong, focused, determined, and without complaint.  I pushed my body to the limit, training as if for an athletic event, but really the event was life.  If my doctor said six weeks post surgery I could begin more intense physical activity, on the 6-week mark I incorporated jogging into my walks, turned jogging into running, and soon was back where I started or stronger.  I’d puke in the trashcan on the side of my high school’s track after running just one mile before evening tennis practice.  Even though I can run for miles in the morning on an empty stomach, I couldn’t run after having eaten breakfast and lunch.  My digestive system wouldn’t allow it.  I coordinated with college professors to have coursework sent to me while I recovered at home from surgery my junior year.  I went to the gym to walk on the treadmill during the polar vortex because I needed to get my legs working again.  I went to yoga when my hands were numb and did poses on my forearms rather than my palms because I needed to use my body in a positive way.  I needed to feel what it was like when my body was working for me, not against me.  I needed to be in charge of my body, make it do what I wanted it to. 

 My family fundraised for the Crohn’s and Colitis Foundation of America (CCFA) for 15 years and I volunteered for CCFA for over a decade.  I created the Pediatric Gastroenterology Family Assistance Fund at University of Chicago Hospital.  I’m proud that I didn’t allow Crohn’s to stop me from achieving, from leading an active, full life.  I’m proud of my philanthropic endeavors and the ways my family and I gave back to the GI community.  I wouldn’t change any of that.  I just wish I’d stopped for a minute to be more present in my own experience.  By never allowing the space to realize or fully understand that my experience was not typical, I think I did myself a disservice. 

 Several months ago, I started seeing a psychotherapist for the first time in my life, ironic, since I’m a clinical social worker.  I sought this support for a personal, important, yet non-Crohn’s-related reason.  My draw to therapy had to do with me needing to feel alive, to feel passion, excitement, connection, desire, and understanding… to feel whole.  I needed to grieve and I was overflowing with anger.  I felt panicked and sad about what I had missed and what I felt I was still missing.  I wanted to feel really alive, like heart-pounding-out-of-my-chest alive. 

 However, when I began to talk, so much of what I shared came back to living life with Crohn’s.  I couldn’t believe that I’d missed how Crohn’s influenced not only how I navigate my life, but who I am, and how I act.  Here I was, no longer operating in survival mode, no longer dissociating, finally aware of my own body, and my feelings, thoughts, and emotions were pouring out of me like a fire hydrant, burst open, flooding the street.  It was as if my Crohn’s flare during my recent pregnancy and the traumatic delivery that followed had opened the floodgates of awareness of 20 years of experiences of growing up with Crohn’s.

 I had serious health issues while pregnant with my second baby.  Reflecting back, I see that the ailments came on in a fashion akin to that of my initial Crohn’s symptoms 20 years prior.  The “we don’t know what’s wrong with you” experience was similar as well.  The chills, headaches, and fevers during pregnancy paled in comparison to the morning when I woke up with no ability to move any joints of my lower extremities.  None.  My symptoms were a mystery—a blood clot?  MS?  Just Crohn’s?  My world-renowned GI doctor was stumped. “You’re a bit of a black box,” he said.  I sat on the crinkly white paper on the medical exam table and asked, “So what’s the plan?”  My doctor’s response was “We’ll figure something out.”  In my mind, that loosely translated into “We have no freaking clue.”  I was terrified.  It was unclear if I’d: A) Need another bowel resection B) Need to try a new medication that “increases the risk of getting a rare brain infection that usually leads to death” or C) Wait for the doctors to figure something out.  I didn’t share it with anyone at the time, but during that pregnancy, I felt I might die, or that I’d potentially live with a severe disability, never able to go running, do yoga, or play at the park with my kids again. 

 With so many drugs pumping through my body and so much illness during pregnancy, I was also secretly scared that my baby wouldn’t be healthy.  There was nothing to do except hope for a good outcome and wait for delivery.  After 15 hours of un-medicated labor, a drastic drop in my blood pressure, and baby’s dangerously low heart rate, I was rushed to the operating room for an emergency c-section.  I felt the wind blowing against my face as a slew of doctors and nurses raced my bed down the corridor through the automatic doors and into the bright lights.  My heart began to pound, my breath became rapid, tears began to flow, and panic set in.  I was acutely aware of what was happening, yet, simultaneously feeling in an out-of-body-experience.   At the last second, a voice of one of the medical professionals from behind me on my left yelled, “Heart rate’s back up!  Cancel the Crash (emergency c-section)!  Cancel the Resus (neonatal resuscitation)!”  I had a brief moment of relief, but medical distress continued and a c-section followed just minutes later.  While in the recovery room holding my brand new baby, swaddled in the white fleece hospital blanket, wearing a little blue knit hat, I cried.  Not happy tears because my baby was healthy.  I cried because I failed.  My body had failed, again.

 Until now, I have not shared the intimate details of this all-consuming process of self-reflection and self-discovery that began for me many months ago.  I have been scared others wouldn’t understand, that they would judge.  I had, however, confided in Rebecca, a dear friend of mine.  Rebecca is soft-spoken, wicked smart, a talented mental health professional, and knows trauma.  She was also my roommate in graduate school, and has taken me to the ER, stayed with me overnight until my parents arrived, calmly rubbing my legs, my body shivering and shaking with chills, my fever dangerously high.  During one of our many phone conversations, I was teary, struggling, trying to make sense of my life as if I was working to solve a physics problem, yet didn’t have enough information and didn’t know the right equations.  She responded, “Al, this is your journey to find your authentic self.”  I laughed.  Leave it to Rebecca to name this humbling, painful, and often lonely process something so pretty, so succinct… so… accurate.  Rebecca’s description resonated with me. 

 I continue along my journey towards healing, wholeness, and authenticity.  I am starting to integrate the fragmented parts of myself, the decades of living in a regimented, need-to-stay-healthy way.  I’m beginning to acknowledge the medical trauma that my physical body endured as threats to its very being, but to which my conscious awareness was not connected.  I am peeling back layers of emotions I never recognized and feelings I never felt.  I am having revelations about decisions I made and paths I chose.  There is so much.  I can’t contain it in my body and mind anymore.  I need to share it so that I’m not carrying it alone.  As I bring to my full awareness this new, yet old, information, I continue to be stunned.  And each time I find a new piece of clarity along the way, the most interesting thing happens: my body gets warm, yet feels chilled, my lips feel tingly and chapped, and I feel feverish… just like I do almost every single time a Crohn’s flare is beginning.  

Guillain-Barre Syndrome: My Story

In 2001, when I was 58, I developed odd symptoms in my legs - pain and weakness, falling on the sidewalk and unable to get up without assistance. I first went outpatient to my physician who had no idea what the problem might be. Nervous and living alone in an apartment, I carried my portable phone with me. One evening I fell and couldn't get up. I called 911 and the EMTs from my neighborhood fire station came and transported me to the ER of my Harvard-teaching community hospital in Massachusetts. The physician asked me to get up from the examining table and walk. I told him the problem was not walking, but falling. He found nothing wrong with me and sent me home. A few days later, at home, I fell again. I called 911, got the same EMTs, went to the same ER, was told nothing was wrong and was sent home again. Then I fell a third time. Having the same EMTs for all the three calls, they assured me that this time they would insist I be admitted. I was admitted but to the geripsych unit , as they believed I was making my symptoms up for attention! This scenario is well known in the disability community. If a physician cannot determine a medical cause for reported symptoms, the default position is too often psychiatric.

I was placed into a bed and later an orderly told me to get up, as the psychiatrist wanted to interview me. When I told him I couldn't get up, he told me I was lying. After the interview, I asked to see a "regular" doctor. She came, had blood work done and later told me the results indicated kidney failure. She put me in the ICU, all the while I kept saying to everyone "It's my legs" to no avail. Retrospectively, I know my elevated creatine level indicated not kidney failure but evidence of a rare muscle disorder. After 3 days in the ICU without kidney failure, the team finally decided to listen to me. They did a muscle biopsy and told me I had Polymyositis. I was in a med-surg unit for a few days, commenting each evening to my attending "This is odd. My feet are paralyzed". Next evening "My ankles are paralyzed", Next day "My lower legs are paralyzed". Then I had complete respiratory failure and was in the ICU on mechanical ventilation for four months, not expected to live. A friend told me the medical team was frantic, not knowing what was wrong with me. Eventually, I was discharged to a respiratory rehabilitation hospital as I was still medically unstable. I stayed for a year. I was then discharged to a nursing home on a trach and feeding tube, where I have been living for 13 years. In 2006, I was decannulated after 5 years intubated, to the surprise of many.

In 2010 I went for a consult with a Rheumatologist at a Boston teaching hospital where I was made a research patient. After 9 years, I got my correct diagnosis- Guillain-Barre Syndrome (GBS). The team concluded I have GBS based on three factors - my report of what I have since learned is called "upward progression of paralysis", the fact that Polymyositis is not a paralyzing disorder, and finally, by looking at the original muscle biopsy slides, where the inflammation of the muscle tissue was insufficient for a diagnosis of Polymyositis. Because of the failure to be properly diagnosed, I never had the opportunity for treatment of GBS in the acute phase.

Today, I am in my 14th year as a nursing home resident due to quadriparesis, an inability to not only walk, wash, and dress myself, but also to cook and clean. I can use my hands in spite of the contractures of my fingers, and can brush my teeth, feed myself, turn pages of books, read, write and use a computer. My mind is intact. In 2011, I got a power chair which permits me to go outside when I want, after 9 1/2 years living inside facilities. I'm an accidental nursing home and disability advocate. In 2011, I read an article in the Boston Globe about the possibility of a nursing home bed-hold program being eliminated. This would have put me at risk, after a hospitalization, of losing my "home" and having to live in another facility, if my current bed were filled while I was away. I wrote a letter in support of retaining the program to our House Ways and Means committee. The letter was circulated and I was asked to become a state and national nursing home advocate. I am now an active nursing home, disability and elder advocate, nationally published writer, speaker and consultant. You can find some of my work by googling "Penelope Ann Shaw, PhD". I am leading an interesting, and hopefully useful, and fun life as a survivor of acute GBS. I enjoy my personal life immensely, mostly my lifelong friends who have supported me in every way during my medical journey.

Originally published in 2016 by the GBS/CIDP Foundation International: “It’s Only Rare Until It’s You. Stories of Strength and Survival from the Guillain-Barre and Chronic Inflammatory Demyelinating Polyneuropathy Community”. Reprinted with permission.

Penelope Ann Shaw, PhD, a doctor of French Language and Literature, is a former university faculty member and administrator of English Language Learning. Now a nursing home resident, she is on the boards of the Massachusetts Advocates for Nursing Home Reform, and the Disability Policy Consortium. Boston. She is a member of the disability patient access focus group at the Massachusetts General Hospital. Boston. She was named an elder trailblazer for Older Americans Month 2016 by the U.S. Department of Health and Human Services. Administration on Aging's Administration for Community Living.