My 2014 MS Evening of Hope talk

Hope

As defined by Merriam-Webster

-To want something to happen or be true and think that it could happen or be true.

-To cherish a desire with anticipationhh.

-To desire with expectation of obtainment.

-To expect with confidence

-Trust

Hope is necessary. It is essential for survival, for living, for being.  Without it there is no reason for, or meaning of life. We all have so much for which to be hopeful.   It is each and every one of our responsibilities to define, discover, cherish, and maintain hope . Living with a chronic illness, such as multiple sclerosis, hope can easily be lost, or forgotten, or sometimes downright impossible. But we have so many more reasons for which to be hopeful than previous generations. Advances in understanding, diagnosing, treatments and medication, and research that has brought us that much closer to finding a cure are but a few.

My name is Rudy Yanuck. I am a 46 year old recently retired pathologist, the 2010 gateway area multiple sclerosis society chapter’s Father of the Year, and a 20 year survivor of multiple sclerosis. though my life with MS is full of moments of hope,, no doubt MS presents challenges each day.   My family shares these struggles with me and I know it is not easy.  For them, I am truly grateful.

I have so many of my own reasons for which to be thankful and maintain hope. Tonight I’d like to share with you my most precious.

My wife and I have had kids over three decades, two centuries, and two millenia.  How many couples can make that pronouncement?  I have her to thank for that and not only for the obvious reasons.The first five were premeditated.

Late winter 1994, during the last half of my surgery internship at the San Diego Naval Hospital,  my wife exclaimed, “I want a baby!”  “No,” I responded.  Starting a family was not on my short list of things to do.  I just received orders for flight surgery training in Pensacola following internship.  Six months that included education in aviation medicine and flight training, followed by what I envisioned as 2 years of a life much like the characters “Maverick” and “Goose”, the confident, cocky, envelope-pushing Navy fighter pilots from the 1986 movie “Top Gun.”   Those orders were never executed thanks to my diagnosis later that spring.

My wife was persuasive.  On December 19, 1994, we became parents of beautiful twin girls, Al .and Ca.  Al made our duo a trio at 10:36 pm, followed 15 minutes later by Ca, making our newly formed trio a quartet.  Our pure emotional bliss lasted less than 8 hours before tragedy struck.  Al became septic, requiring extreme modes of life support.  On Friday, December 23 - please take note of the date, 1994, Al took her last gasp of air as she kissed the three of us goodbye.  We were a trio again.  

Despite our grief and despair over Al, we chose the hope Ca brought us.

In 1996, my first year of pathology residency, in late winter, my wife exclaimed, “I want another baby!”  Again, I selfishly answered, “No.”  Later that year, on December 31, at 3:21pm, An entered the world, and our family.  A few months later his profound deafness was discovered.  At nine months he developed cataracts, and at 17 months, juvenile diabetes.  After an exhaustive genetic workup searching for a reason, the best answer we were given was, “The An syndrome, God just made him that way.”  A muscle biopsy was normal but “smelled like a mitochondrial abnormality,” according to Dr. Salvatore DiMauro, the World’s leading expert on mitochondrial diseases.  He discovered most of the mitochondrial disorders, literally writing the book.   Later An’s developmental delays became evident. He suffered a traumatic retinal detachment resulting in the loss of that eye, and most recently vision threatening glaucoma in his remaining eye.

More grief and despair, but ultimately we chose hope.

Early summer 2003, my wife, earned her  MSW degree with honors at Washington University, the nation’s top school for social work, My wife again exclaimed, “I want another baby!”  Once again my answer was,”No.”  After all, it would make more sense to put her newly earned graduate degree to good use, right?   On August 24, 2004, at 11:23pm, El was born, greeting us with smiles, bringing us hope.  My wife proved to me that being an amazing mother and a superstar therapist were not mutually exclusive.

In early 2008,  my wife proclaimed, “I’m going to be 40 soon.  This is my last chance.  I want another baby.”  She was only 36.  Initially, I responded with my consistent “No.”   Then, over the next few weeks, I began thinking about her desire to have another child.  I’ve heard older women say, a touch of regret in their voices, “I wish I would have had more kids.”  I have never heard anyone say, “Damn it! I had too many,”  I wanted to prevent her from having this regret.   At 12:12pm, October 13, 2008, Os, who looks like the love child of Paul Newman and Brad Pitt, completed our brood.  Our family was finalized...or so we thought.

“But dad, you’re a doctor.  You should know how to prevent this,” 16 year old Ca lamented when we told her my wife was pregnant in early summer 2011.  We were still in shock ourselves.  On mid morning Friday December 23, my wife spontaneously went into labor.  At 4:00pm Ab unequivocally completed our family filling our lives with more joy a hope than we could have imagined.  

Now days, in late spring 2014, when asked my kids’ ages, I reply, “19, 17, 9, 5, ...and 2.”  Preemptively answering the unasked questions, I continue.  “Same mom. No, we’re not Catholic.  And until recently, no, the middle names are not ‘Oops’... but it’s the best damn mistake I’ve ever made.”

Never lose hope.

Thank You

Evening of Hope 2014 blog (conclusion)

With the addition of a small suggestion from Michelle, I didn’t.

As I entered the venue for the Evening of Hope, Michelle hung a gift bag on my scooter containing an afghan, knitted by a cancer survivor, as a thank you.  She informed me I would be the third of three speakers.  My wife, eldest daughter, and I sat at a table next to my friend Pat, who had driven 2 hours from Columbia to hear my talk, and her grand - now THAT’S a good friend.

After the second speaker, Michelle began her introduction of the next speaker: me.  As I made my way towards the podium, a petite blonde woman, I believed to be one of the NMSS Chapter staff, clipped a lapel microphone to my collar and handed my wife a wireless battery pack to clip to my belt, prepping me for my talk.  I continued my trek to the podium, gave my talk - which went far better than I had hoped - and began the return trek to my seat.  On the way back, the same woman as before unprepped me, removing the devices placed ten minutes earlier, and told me how well I had done.  At my table, my wife told me that I did, “great, not a dry eye in the house”...including my own.

Michelle then began her presentation of a handmade quilt to the sponsor of the evening, another MS survivor, Brenda Snow, as a thank you not only for making our event possible, but also for all she has done for the MS community through her Snow Companies.  Brenda went to the podium to accept her gift and speak.  Much to my amazement, the woman I thought CHAPTER STAFF, MY PREPPER, walked to the podium!

At the conclusion of the evening, I had the opportunity to meet and mingle with a few of the attendees, both newly diagnosed, and “old salts” with regard to MS, like myself.  In the newly diagnosed, I saw myself 20 years ago- upright, walking, no external visible signs of the internal war their bodies are waging against themselves.  In the “old salts”, I saw myself now- long since able to keep secret the internal battles of war now visible, some still raging, others lost.

A Chapter volunteer and fellow MS survivor introduced herself to me.  She invited me to become an MS Ambassador.  As an Ambassador, I would have the opportunity to host a volunteer fair table, speak to a class of students, pass out pamphlets at fundraising events, and speak about MS at local organizations whenever the National MS Society is invited to do so.  This is just the kind of meaningful fun for which I have been looking.

Brenda walked towards me.  Passing by, she dropped her business card into the gift bag hanging on my scooter’s handlebars and said, “Shoot me an email tomorrow.  It may take me a while to get back to you, but I will. I could use you.”

Michelle had asked me to speak at the event about what gives me hope, to try to give hope to those who may be struggling.  Yet, I have no doubt, I left the event having just been given the most hope of anyone there.  Heading to my car, I noticed a feeling I had not had in quite a while.  I felt a “puff” in my chest, a confidence, the sense things could be, would be, great.

The next day, while reflecting on the event, I googled Brenda Snow.  Reading about her, her Snow Companies, and her trademarked Patient AmbassadorTM   model of direct-to-patient communications, empowering patients, giving voice to their disease, and sharing their personal inspiring stories, my eyes began to moisten.  Tears slowly trickled.  By the time I finished, tears were streaming down my face, my head echoing, “Could this be my life’s next chapter...”

Evening of Hope 2014 blog (part 1)

“Awesome!  I hope you will be able to speak at the event,”  replied Michelle in her email response.  She was referring to the YouTube link I sent of the short video of my family and me.  The Gateway Area Chapter of the National Multiple Sclerosis Society commissioned it when I had been honored with the 2010 Gateway Area Chapter of the National Multiple Sclerosis Society's Father of the Year award.  

Michelle Keating, a chapter board member and fellow multiple sclerosis survivor, contacted me at the suggestion of Rebecca Fehlig, Chapter President, whom I had met earlier that Spring at a fundraising event.  Michelle was organizing the 2014 MS Evening of Hope (the first ever event of its kind by the Chapter) and asked if I would be one of the speakers, sharing “what gives me hope.”  Many of the attendees would be newly diagnosed, most likely scared of what their futures might hold, now that they contain those two words, Multiple Sclerosis. They might likely feel pretty hopeless...

I jumped at the invitation, emphatically saying, “YES.”  This was exactly the kind of opportunity I had been hoping for, yet never expected.   Since my forced disability retirement from medicine, I had been searching, trying to figure out my life’s next chapter, especially as my children got older and my primary parental duties lessened.  

I knew that I did not want to return to pathology, an area of medicine not entered into by choice.  “Time to have fun,” I decided.  Reflecting on my education and training, personal struggles and triumphs, my gift for gab making a short story long,  and my passion for performing in my youth, I felt that public/ motivational speaking would be a great way for me to have fun meaningfully.  A ridiculous pipe dream, I know.

In fact, I had practically no public speaking experience, limited to fundraising events, thanking donors for their generosity, and telling them how their donations were helping the MS community.  I had only spoken about myself in the “Memoirs” class I’ve been taking over the past year at the Lifelong Learning Institute at Washington University .  There, I only spoke to at most ten people at a time. I call my classmates my “editorial board.”

Anguishing over what in my life could possibly give someone starting their new journey in, if not my shoes, ones that will most likely look awfully similar, I asked my friend and fellow MS survivor, Pat Sachs.  She immediately responded, “Creativity,” -- a story I recently wrote for class.  “What’s more hopeful than children?” she continued.  Modifying my story to the venue, I had my MS Evening of Hope talk.

The week before the event, when Michelle and I were arranging a time to meet and discuss the upcoming event, I informed her my talk was roughly nine minutes long.  “I’m sorry but you only have 5-7 minutes to talk.  You’ll need to cut it down,”  she responded.

“But where?” I thought.  I cut a few words, rearranged a few sentences, and actually added a few details. 

The weekend before the event, Michelle and I met to go over my talk.  As I began, she started her stopwatch.  Mid-way through, I noticed her turning off the stopwatch.  I finished my talk with tears streaming down my cheeks.  I looked up at Michelle, and with tears of her own, she said, “It’s perfect.  Don’t change a thing.”

- to be continued -

RRY II - AKA DAD

"Rudy, they're working on your father!" came the terrified, panic stricken voice of my mother, through my Bluetooth earpiece.  I answered the call on my mobile phone on the morning of November 4, 2010. "Who? What?" I replied in confusion over what I had just heard. "Paramedics are here working on your father.”  "He's dead Rudy.  He's dead.  Oh my God he's dead OH MY GOD HE’S DEAD!!!" She wailed.

"Hi mom. I'm on my way driving CB to school right now.I'll call you back in about 4 minutes once I drop her off," I cheerfully responded with my 15-year-old daughter in the passenger seat. I didn't want CB to have to start her day overhearing this kind of conversation. No one should have to start their day like this.

I dropped her off at school and called mom back as soon as the car door shut.

I finally got a hold of mom on her mobile phone after trying her home phone. The ambulance had left, and she was en route to the hospital.   “Are they taking him to Holy Spirit Hospital?” I inquired.  “No,” she replied.   “People go there to die. I told them to take him to Harrisburg hospital” she explained. "I don't think it will make a difference," I thought to myself.

"What happened?" I asked. Amidst sobs and sighs, she proceeded to describe to me the events of the previous 12 hours. She explained how just before bed, dad felt very uncomfortable with indigestion. I immediately thought to myself, "heart attack.”  But that did not make sense as dad was "healthy as a horse"  outside of his multiple sclerosis. She told me how he was unable to get comfortable and was tossing and turning all night, not being able to sleep with the discomfort. Subsequently, she wasn't able to sleep either, up with him trying to relieve his pain.

A little after four in the morning, she finally fell asleep from exhaustion. When she awoke approximately one hour later, he was lying there beside her, motionless, unresponsive, not breathing, froth covering his lips, with an occasional bubble forming, then popping. Paramedics came and began attempting to resuscitate him, removing approximately 2 L of blood from his stomach.

By the time she had finished recounting the previous night’s events, she had reached the hospital and had parked the car.  She just sat, paralyzed, afraid of what she would find when she went in to the emergency room.

As mom walked into the emergency room, I walked into my office. I closed my door and sat. I sat with my memories of dad. Even though I had not yet been told he was dead, I knew.

I thought about the time when, as a child, maybe five or six, he would be lying on the bed in his darkened bedroom, unable to lift his head off the pillow without being overcome with severe vertigo and violent retching. Mom would quickly rush me past his room, attempting to protect me from the sight. Those were my first experiences with multiple sclerosis, a disease that dad had lived with, at that time unbeknownst to me, until his death.

I thought about the time he and his dad, my grandfather, Rudolph Raymond Yanuck Senior, 40 years ago, were in the attic rafters of the new construction at 901 Charles St, the house my dad designed and mostly built himself.  Both men wearing t-shirts, covered in pink flakes of fiberglass from the insulation they were installing.  My grandfather holding the stump of a lit stogie tightly between his cheek and teeth.  Dad laughingly saying, “Pap, you’re gonna set us all on fire and burn the house down with that thing.”

I thought about the time when, as a teenager, we were playing baseball. I was pitching, he was catching. He got hit in the head by the baseball he couldn't see coming. This was the first time that I found out he had multiple sclerosis. It was the last time we threw baseball together.

I thought about the time he walked with a cane, across the college campus, to my induction ceremony  into Phi Beta Kappa, senior year.  I thought about the time that he attended my med school graduation in a motorized scooter. I also thought about the time he attended my wedding in the same scooter the following week.  I thought about how, after my wedding, the visits with my father became fewer and fewer, and further and further apart.

I thought about 2 L of blood in his stomach. Wondering what could have caused it. The only plausible explanation, I thought, was an undiscovered peptic ulcer eroding through the posterior wall of his stomach into the splenic artery, a major arterial branch. My suspicions were correct and corroborated by the death certificate, which read, "cardiac arrest secondary to ischemia due to severe anemia caused by peptic ulcer disease. "  An autopsy was never performed for confirmation.

Days after my dad’s funeral, I began wondering, now that my grandfather, Rudolph Raymond Yanuck, Senior, and my father Rudolph Raymond Yanuck, Junior were dead, was I still the third?

Crash

‘The AFIP wants me to observe an autopsy up in Riverside tomorrow.” said the San Diego Naval Medical Center’s forensic pathologist.  “An Air Force jet crashed on a training mission near a populated area and the pilot did not have a chance to eject. They found his body amidst the wreckage. I’m leaving at 6:30.  Wanna ride shotgun?” he asked.  Instantaneously a “HELL NO!” response formulated at the top of my skull, working its way down my brain, through my throat and mouth, and by the time it exited across my lips, sounded something like, “Sounds great, I’d love to.”

What was then known as the Armed Forces Institute of pathology, or AFIP, Now known as the joint pathology center, or JPC, is the premier pathology reference center for the federal government,  Some have called it the “Mayo Clinic of military pathology.” It is also where the department of forensic pathology for the military is located.  The Naval Hospital had the closest military forensic pathologist to the crash site on staff, hence, the reason for the assignment.

Early the next day on that late summer 1994 at 6:30, we left with me in the passenger seat of the forensic pathologist’s pick up truck for the two-hour drive from the San Diego Naval Medical Center to Riverside, California. Upon our arrival at the coroner’s office, after brief introductions, the autopsy began. As the charred remains of the pilot were burnt beyond visual recognition, dental record comparison was required to identify the body.  The records supplied by the Air Force matched, fortunately for us, unfortunately for the pilot.

Next, we looked through the pilot's personal effects that were found on and near the body at the crash site. Small fragments of fire resistant flight suit material, a portion of a metal belt, a cracked helmet visor, the sole of a boot were all articles that survived the inferno partially intact. Of special interest to me, a wallet, which contained partially melted credit cards, a driver’s license, and a picture with charred edges.

Of this whole autopsy experience, seeing that picture is what moved me the most.  The picture  showed a young, happy, loving family.  The pilot, about my age, with a blond, military haircut and a twinkle in his steel blue eyes that seemed to say, “Life doesn’t get any better than this.”  His young, attractive, brown haired wife, with her big beautiful, infectious smile seeming to say “I love my life.” Their son, a blond towheaded boy of maybe five or six with a big tooth missing grin, seemed so happy to be nestled in between his mom and dad.

As I looked at the picture, I imagined this likely being their most recent family photo, one they never expected to be their last.  I imagined the wife, answering the knock on the door to find two Air Force Officers present to inform her there had been a plane crash and she was now a widow. I imagined I heard her scream "NOOOO!", and saw her collapse in their arms.  

I imagined the look on the little boy’s face when told dad was not coming home...ever. Not even hearing his death was heroic, by not ejecting himself to safety, rather, steering the doomed plane away from populated areas, saving countless civilian lives, sacrificing his own, could soften the blow of the knowledge “Daddy” was never coming home.

As I recount this episode in my life, the significance of this moment became evident. In the picture I saw myself, my family, at the beginning of our journey, ready to start our adventure, not sure what was to come, but hopeful. In the pilot I saw myself in command of my vehicle, his, the plane, mine, the body.  For some reason, no matter how hard he tried, he was unable to steer the plane to safety.  Now, thanks to Multiple Sclerosis, like him, no matter how hard I try, the best I can hope for is a heroic effort.

Death by Christmas Lights Saga IV

Prologue

Christmas has always been an exciting, joyful time for me as a child, and still is today as an adult . Growing up, there were family gatherings, presents, and snow, with snowball fights, and presents, and snow forts, with snow tunnels, and presents, and sledding and skiing and presents and Christmas trees with decorations and presents.  The only thing that was missing was outdoor Christmas lights. Once I became a homeowner, I decided I would have outdoor Christmas lights.

The first Saturday after Thanksgiving in 2010, I did what by then had become a tradition of hanging outdoor lights.  I’m sure it is a somewhat comic spectacle watching me zip around the front yard in my little red scooter setting up the outdoor array.  After perfectly positioning a string of lights, I returned to the bucket of decorations in the driveway.   I leaned down to my right, reaching into the bucket.  Grabbing two handfuls of string lights, I began righting myself, and the scooter tipped over.  Not wanting the glass I held to shatter and slice my hands, I broke my fall with my elbows.  They ached slightly,  but my sleeves had no rips after my fall.  I continued hanging lights.  That night, taking off my shirt, I noticed a quarter sized abrasion on my left elbow.  I thought it was nothing of concern.  “Just a flesh wound,” I muttered to myself. Nothing so innocuous and insignificant as a scrape could have  devastating consequences.   Boy, was I wrong.

Conclusion

Antibiotic associated diarrhea wasn't the only "fun" of my nine-day hospital stay.  Immediately after surgery, my arm started regaining its pinkish, humanoid appearance.  It was still markedly swollen. So, back in the makeshift IV pole sling I went, an apparatus that felt more like a Medieval torture device then modern medical ingenuity.  I spent both awake and sleep hours with my arm elevated above my heart pointed to the ceiling, 24/7. The extreme discomfort of this position prevented me from sleeping at no more than 20 to 30 minutes at a time, with seemingly hours of restlessness in between.  During these sleepless nights, my mind would wander to dark places that, in retrospect disturb me, but at the time seemed completely reasonable.

At night the darkness in my room led to loneliness, that turned the discomfort of the sling into agony and despair.  “Why me?” would run through my mind like a broken record.  I thought about everything that MS has taken from me, starting with my young adult self all the way to the present.  An intense and profound sadness over “what could have been, should have been” deepened the abyss.  I just wanted it to end, all of it to end.  Fortunately, thoughts of my wife and children would break through my melancholy and yank me back into the light.

What a waste that would have been had it ended.  I would have missed out on so much life.  Ironically, much of my experiences I owe to my disease.  Without it, opportunities to try new sports, such as wheelchair waterskiing, or experience old ones in new ways, like wheelchair snow skiing, would have never presented themselves to me. Thanks to MS, I don’t have to wait in line for rides at amusement parks or at airport security, and I get great parking.   Without it, I never would have been honored by the local MS society as the 2010 Gateway Area MS Society Chapter, Father of the Year.  I would not have done the radio and television public service announcements that went along with the award.  More importantly I would have missed out on watching my children grow and succeed as they each have, and Abigail never would have been.

Shortly after being discharged from the hospital, I told my friend Don about my ordeal with septic bursitis.  I talked about the ambulance ride, my blood pressure dropping in the ER, my swelling left arm.  We shared jokes and laughs about what I had gone through, like old friends do.  As I told about my high fevers and sweats, delirium fueled dreams, and disturbing thoughts and feelings, he quieted, no jokes, no laughter.  He just listened.  When I finished telling my saga,  Don was uncharacteristically silent.  I realized then just how close to widowing my wife and orphaning my kids I had been.  After a few moments, he broke the silence by saying, “Who’da thunkit, man, death by Christmas lights.”

Death by Christmas Lights Saga III

Despite heavy doses of high-power antibiotics, my arm continued to swell and become even deeper purple until it looked more like it belonged to the popular kids’ show character Barney the Dinosaur than me. My temperature still spiked periodically.  My health continued its downward spiral.  Dr. Irvine decided on Friday night to take me to the operating room for an intra-operative incision and drainage on Saturday morning.

Hospital transport wheeled me to the OR the next morning.  They placed me in a private pre-op holding room.  My wife by my side holding my hand, provided comfort, strength, courage, and most of all love.  Through her touch, I heard “You better come back to me.  We need you.”  

A nurse fluttered around the room prepping me for surgery. The anesthesiologist joined us briefly asking me about previous surgeries, allergies to medications, any history of adverse drug reactions.  All to which I replied “no, except for an ‘appy’ (medicaleese for appendectomy) in 2002”.  Dr. Irvine came in briefly to answer any last minute questions.  A kiss on the forehead from My wife, and the procession to the OR began.

Even though I had been a surgeon-in-training in my “previous life” and had been involved in hundreds of surgical procedures, most much more serious than what I was about to experience, a small part of me felt fear. My thoughts and concerns were less about fear of not surviving the surgery, but rather how my family would go on living if I didn’t.  As my procession passed through the large wooden automatic double doors into the OR suite, my coherent narrative ends thanks to the preoperative sedative administered by the anesthesiologist prior to leaving my holding room.

Looking down at my arm when I woke from surgery and once the anesthesia had worn off, two things relieved me. The first, I was still alive.  The second, my arm no longer looked like it belonged to Barney but a plumper, pinker version of me.  Hospital transport returned me to my room and the “real fun” began.  By “real fun” I'm not referring to the daily physical therapy sessions or the uncomfortable sleepless nights with my arm elevated, pointing to the ceiling in the modified IV pole sling.

Antibiotics not only kill bad bacteria, like the presumed staphylococcus that was attacking me, they also kill good bacteria we need to maintain life.  Bacteria live in everyone’s intestinal tracts facilitating digestion and absorption of nutrients, i.e. food.  Much to most people's surprise -and sometimes disgust- bacteria is necessary to live.   Antibiotics can cause the healthy balance of the normal bacteria residing in the colon to become altered.  When this happens antibiotic associated diarrhea develops, resulting in a watery, frequent, and sometimes explosive diarrhea.  Being a mobility challenged person, I have difficulty outrunning the “runs” as it is.  Giving them a head start is just unfair and downright sucks!  

The first few times I found myself in the position of needing help with the “mess” I had just made of myself, my bed, and sometimes the floor was mortifyingly embarrassing.  After a while I resigned myself to the fact that it was outside of my control, a humbling experience.  I just had to accept that I needed these often times young, cute nurses to run washcloths all over my backside, perineum, and genitals, areas that I had reserved only for my wife. A concept to which my good friend, the older brother I never had, and best man, Don, later said, “Damn, I’d be shittin’ constantly”.