Tuesday, April 11, 2017

Is This How It Ends?

Have you ever asked yourself this question? It has a question I have asked myself nine separate times. Confronting your own mortality - your vibrancy - is frightening; the greatest dread is for your question to be answered with one word. Every time I ask myself “Is this how it ends?” I fear the answer: “Yes.”

The first time I asked myself that question, I was ‘vacationing’ in Hawaii. My tentative diagnosis of MS in Korea was first shared on October 6, 1999. Unfortunately, the Army did not have capabilities for advanced diagnosing in-country. I was sent to Tripler Hospital for another MRI, a Lumbar Puncture, and a slew of other appointments.

The Lumbar Puncture, or Spinal Tap, didn't work out as planned (understatement). After the most excruciating procedure of my life, my doctor finally abandoned efforts to extract fluids from my spinal column. My best recollection of her instructions is, “Go back to your billet and try to let your body rest. We'll try it again in a couple of days.”

Losing most sensation in my upper body, as well as sight in one eye, I did the exact opposite of what my doctors prescribed: I rented a car to drive around the island and sightsee. It seemed logical to my blurry mind.

Touring the perimeter of Oahu, the question first formed in my head: “Is this how it ends? Losing my limbs… losing my sight… agonizing pain… Is this how this MS will develop? ...a life with the horrors of modern medicine?”

My next spinal tap was a little smoother. After initial treatment, I returned home (Wonju, Korea) with medication attempt #1 for nine additional months. Then, retirement. Then, life with MS.

Friday is my second treatment infusion of medical attempt #7. I'll leave drug names out for now, as my story is an inaccurate representation of many miraculous treatments. This is a story of the fear I face every day, as I try to stem the advancement of my MS, maybe one day reversing the course. This is a story about asking that question for the 10th time.

New treatments scare the hell out of me. I used to optimistically look forward to the start of a regimen. Later, I learned to fear ‘critical points.' Now, every pill, every needle, is the potential FINAL BLOW.
Doing nothing may be even worse.
Or, it could be better.
Who the hell knows.

Brie and I moved to Oregon in the summer of 2007. I was enjoying the continued stability of medication attempt #1. Two weeks after we arrived, I was in the hospital with unknown pains in my leg. There were theories, but no firm diagnosis or treatment. With no noticeable signs of damage or infection, I spent the next five days warehoused in the general ward for pain management.

In between green lights and the opportunity to self-administer another dose of morphine, I lay and thought, “Is this how it ends? ...in the old veterans’ wing screaming for more drugs?”

Finally, an exam discovered a fluid pocket, undetected because of the masking properties of my medication. No testing was needed; within an hour after extracting a sample, I was in surgery. By smell alone, the phlebotomist detected an infection. We later found out the staph infection had traveled through my thigh and up into my hip.

Minus the two big holes in my leg, I was fine the moment I awoke from surgery. The prevailing theory was my injection struck a foreign body in my leg (old splinter?) and caused the infection. Three days later, I went home; back to normal.

Back to normal is something I can't even imagine today. I don't remember what normal was; my new normal worsens daily and worries over accelerating my next normal flood my mind right now. What will this treatment bring?

Medication attempt #1b is actually still #1. ‘Something else’ caused the infection, so we thought ‘why mess with success?’ In 2011, I developed a pain in my other thigh; the feeling was indescribable but for the words, “It's happening again.” As I drove to the hospital, I wrestled again with, “Is this how it ends? Am I destined to fight the same infections repeatedly, until I lose?”

In the ER, the diagnosis needed more than just my word. Unfortunately, there was nothing else: clean blood work, clean X-rays, no visible sign of damage. The doctors were stumped, and I was growing irate, insisting I knew what the problem was.

A surgeon was called in to review my case. After extensive work, he was stuck.
“We don't see anything. I'm not saying that you are faking it, but I've never seen anything like this before. Wait! I remember a patient I had a few years ago, with similar symptoms…”
“Yeah, that was me.”
My diagnosis was confirmed; I was bombarded with antibiotics and steroids; the infection was shut down, as was my 12-year run with medication attempt #1.

Recurrence is the reason I have slowly grown to trust nothing when it comes with my MS. Medication reactions are not a singular horror story; they're Halloween 1/2/3/4/5/6/etc. Even as I write this, I fully understand my first infusion of #7 (last October) went well…

Medication attempt #2 was an infusion treatment as well. After a needed wash-out period, my candidacy was confirmed. No more self-injections!! A monthly trip to the chemo ward would be cake; I do love Spa Day at the VA.

My first infusion was indeed cake: painless, relaxing, no side effects. Besides, the nurses in the chemo ward really knew how to take care of their patients. I thought everyone was happy-go-lucky: these nurses have a sweet gig, kind of like a glorified candy striper. Whatever. I loved it.

15 minutes into my second cake walk, I started to feel a little uncomfortable.
“Excuse me,” I asked as I rolled my IV cart up the nurses’ station. “Can I get something? I'm feeling real itchy.”
With a stone face, her reply was, “How is your throat?”
“It feels a little swollen.”
“Go sit down in your room. We'll be there in a minute.”

Over the next half hour, every never-to-be-thought-of-as-a-candy-striper-again in the ward attended to me: removing the IV, flushing the site, attending to my rapidly worsening anaphylaxis. I watched the calm, focused care, asking myself, “Is this how it ends, with an immediate shutdown of my body?”

Doctors were called, but the nurses ran that fire drill perfectly. Well-rehearsed or well-practiced? By definition, if you're going to have an anaphylactic reaction, it will be after initial exposure, i.e. the second infusion. My guardian angels saved the day. After pictures to document the severity/recovery, I went home that afternoon to my family like it never happened.

As I prepare for my second infusion this time, my thoughts focus on another word: anaphylaxis. What are the odds lightning will strike twice? I'll be in the same chemo ward… probably some of the same nurses… maybe I should get the same room/chair… I definitely need to buy a lottery ticket.

My greatest fear is making it through April 14th.

Medication attempt #3 was a life changing blessing. Pills; no more needles! It was convenient as well as effective. 10 months passed as I showed improvement, gaining strength and feeling healthy again (I still did not look disabled).

This story is usually a long one. Bottom line: my faculties turned to mush as meningitis ravaged my brain. For 9 days, I was unable to express a comprehensible thought. One concern I kept to myself: “Is this how it ends? Will my MS, or the treatments of the disease, turn me into a shell of the man I once was?” I recovered, sort of, and life went on.

There's the rub. Even if I make it through April 14th, I remain fearful every day of my life. In 2012, I thought long and hard about going off-treatment for the first time. The thought still comes and goes often. I don't fear one possibility; I fear both, the medication destroying my body or stepping back and letting my MS run its course and destroy me. There seems to be no good outcome. I'm so deep in despair, I can't see the upsides of either.

Please, please, never tell me, “Have you heard about…?” Yes, I have.
Please, please, never tell me, “My friend did this, and his MS is cured.” I am very happy for them.

I tried medication #4, an old-school treatment. Years of efficacy and tolerability stood behind this drug. It was OK, easy to inject, and a wonderful bonding experience for Ellie and me. Unfortunately, my slide into secondary progressive MS was underway. After many years of stability, followed by a few rough ones on the medication-go-round, I again wondered: “Is this how it ends; drugs have no effect, my slide into oblivion is here… and it's inevitable.”

Inevitable is a word able to crush your spirit with a mere whisper.
‘Why fight?’
‘Why try?’
‘Why not quit now, before the pain worsens?’
Those thoughts were crushing my soul. One tagline continued to drive me:
Never Stop… Never Quit…

Medication attempt #5 was an FDA Phase 2 clinical trial. High hopes were dashed as my health continually declined over the next 2½ years. There were thoughts, dreams. I must be in the untreated placebo group (50/50), and a magical cure was still in sight. Yes, I was on the placebo but that magical cure didn’t exist. The drug had failed to meet its endpoints. “Is this how it ends, with hopes hinged on the untested/unapproved? How far can I decline before true magic happens?”

Acts of desperation are neither beneficial nor sustainable in any situation; healthcare decisions made from a sense hopelessness will disappoint, worsening an already failing body. My doctors continue to focus me with realistic and positive, not lofty, expectations.

Medication attempt #6 was a relatively new pill on the market. Basically, the only untested option. What the hell, huh?

I awoke on December 28, 2015. It was my 44th birthday, I was 5 days into the new regimen. I tried to roll over and out of bed. Nothing moved. I tried again and, once more, nothing. My left side, significantly weakened over the past few years, lay dormant. For a while, before I called out to Brie, I peacefully thought of my future. “Is this how it ends? Am I bedridden forever? I can do this… I think.”

I gained enough function to make it to the ER, supported under Brie’s power. Diagnosis: stop taking the meds, flush my system out, then wait. December 29th, I walked. I was happy to walk with the glorious difficulty and dysfunction of December 27th! Simply flushing the drug from my system halted a gastrointestinal reaction. Now what?

‘Now what?’
If you're looking for something to brighten your day, don't search for synonyms of hopelessness. http://www.thesaurus.com/browse/hopelessness
Desperation. Misery. Gloom.
Yep, that about sums it up.

Medication attempt #4b was a redo of #4. This was essentially a placeholder until something better came along. It didn't show positive results, but at least it didn't send me to the ER! Besides, without the injections, my MS probably worsens. Every injection was the proverbial big bite of a shit sandwich. “Is this how it ends, occupying my time until my body can fail no more?”

I have tried every approach. I have pledged my allegiance to medications that held my MS at bay until they could no longer help me. I have embraced the newest breakthroughs and hitched my wagons to a search for the next hope. I have even been a human guinea pig for an unproven treatment. No matter what, I have held on until something comes along…

Fortunately, I have an army of support to care for me, guide me, walk with me, and push me forward. My family, Brie and Eleanor, are the reasons I can never stop. The rest of my family and friends, and their incredible motivations, are the reasons I can never quit. My array of doctors and nurses, their sole focus being my improvement, are the reasons I will fight.

Medication #7 is rituximab. Though not approved for MS, my doctors fought for candidacy in this treatment based on Phase 2 testing of the drug. I am not qualified to say this, so please forgive me if I word it inaccurately, but the drug is a similar agent to ocrelizumab. Ocrelizumab was just recently approved as the first sustainable treatment for progressive MS; the VA did not want to wait as my condition worsened, so they started me on rituximab six months ago. The jury is still out, but I am hitching my wagons once again.

In the past, I always asked myself “Is this how it ends?” when I stood in the midst of everything failing.
This time, I walk into my treatment with those words hanging over me.
This time, I carry with me the fears and anguish of my diagnosis and Medications #1a/b, 2, 3, 4a/b, 5, 6.

If everything goes well on Friday, April 14, I will walk on Saturday for Portland’s 2017 Walk MS; this will be my not-so-quiet celebration. I will still carry with me the fears and anguish of Medication #7.
…but I will carry them.
I will not stumble.
I will not fall
This cannot be how it ends.

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®
Kevin Byrne
Portland, OR

Monday, April 3, 2017

45 is the New 0

I despise clichés. I see them as an inaccurate way to marginalize topics of greater importance; my response is normally one of scorn or mockery.
It's always darkest before dawn
No, before dawn is BMNT (look it up).
That which does not kill us, makes us stronger
Sorry, Nietzsche, what doesn’t kill you can weaken, cripple, bankrupt, depress, or worse.
Whatever happens is God's will
My initial response was vulgar. To put it in terms appropriate for Ellie: please don’t say that about my God.

There is no cliché appropriate for my current predicament. ​My body is under siege; daily struggles are taking their toll. To be honest, I wasn’t sure if my final blog post of 2016 (Bike MS 2016 - Last Dance) was indeed my last dance. I lost the taste for writing about MS, for documenting continual loss of the existence I will hold dear even after memories fade. This is not the life I’m willing, able, or strong enough to endure; I despise this disease for forcing a fight.

Quantifying Loss
Visually, my slide began around four years ago, after release from the hospital (meningitis, a reaction from medication #3).

On April 8, 2013, I started Tracking my MS. It is a completely non-scientific protocol that highlights one area perfectly: the downward trend. My decline, though not significant day-to-day, has proven crippling after four years.

There are moments when I sit back and think of what I have lost:

  • I can’t run anymore; walking any distance is difficult
  • I can’t type on a keyboard, instead awkwardly dictating through a voice to text application
  • I’m left-handed but I cannot write, nor can I shave, eat, dress, or brush my teeth in the ways I learned over the first 44 years of my life
  • I have complete feeling and sensation on my left side, I’m just losing the ability to move and coordinate
  • I have complete ability to move and coordinate my right side, but I have already lost most feeling and sensation
  • I cough and choke dozens of times every day, as small portions of everything I eat and drink go into my lungs
  • I fall, leading to cuts, bruises, and cracked ribs
  • My voice ranges from garbled and slurred to inaudible (voice-to-text aggravation)
  • Pain, spasms, edema, and atrophy are part of every day
What do I miss most of all? My pincer grip. The simple ability to grasp something between my thumb and index finger; I could do that with my left hand since I was about seven months old. I really do miss my pincer grip, for its absence makes so many simple tasks… well, difficult or impossible.

This story of loss isn’t shared with you to elicit pity or sorrow. I'm describing my mindset. I finally feel disabled. After 18 years of battles, hope, and clichés, I am coming to grips with the fact that this is my MS. While we fight to drive change through advocacy, professional education, and providing services to empower people with MS, my struggles will continue. While we raise funds to support cutting-edge research, research that will someday lead to a cure, my MS will worsen. Since you last saw me, my condition is worse; when you see me again, it will be worse still. I have little hope of improvement. Next year, next week, I try to envision life…

So, now what will I do?

The first of many questions, ‘So now what?’ is an absolutely frightening beginning for a man in search of answers. How bad will this get? Do you have the money and insurance to care for yourself? How about your family? How long can you hold on? How long should you have to?

I never imagined feeling tired and scared like this again.

Darkness Visible
Years ago, a good friend of mine shared with me this memoir, written by William Clark Styron. They discovered the book when in a time of personal struggle; I first read it in during rising action of my own trials. While it may be easy to succumb to fear, depression, and anxiety (as I nearly did in 2003), understanding the existence of alternate paths is a value I am unable to quantify. Any disease, any disorder, is a gateway into despair.

There was no “cause” to my depression; my MS was merely one, albeit a significant, aggravating factor. Ultimately, the parallels of my struggle and Styron’s were remarkable:

  • Those “who kept admonishing me that suicide was ‘unacceptable’”.1
  • The discussion of “early sorrow—the death or disappearance of a parent...before or during puberty”2 (my father lost his own struggle with depression to suicide in my youthful days).
  • Ultimately, I embraced the singular truth, “depression is not the soul’s annihilation; men and women who have recovered from the disease—and they are countless—bear witness to what is probably its only saving grace: it is conquerable”.3
So, why discuss this beast I conquered more than 14 years ago? Styron writes, “…depression has the habit of recurrence. But most victims live through even these relapses, often coping better because they have become psychologically tuned by past experience to deal with the ogre. It is of great importance that those who are suffering a siege, perhaps for the first time, be told - be convinced, rather - that the illness will run its course and that they will pull through.”4

Recurrence seemed inevitable a few weeks ago. The severity of my disability and, what I saw as, the futility of fighting was confirmed again and again: long-term disability transition from work, the VA’s 100% ‘total and permanent’ classification of my condition, and Social Security disability processing, on the first attempt without any questions, were just a few of those things that threaten depression. Adding to that, my body continues to fail. I’m quite aware of the danger confronting me.

Knowing depression will unexpectedly strike when you’re least prepared, I picked up William Styron’s memoir once again for reassurance I will pull through. His words helped me shape my fear into a recognizable form. In those pages, I sat with the author and commiserated. I listened to his deepest moments, then shared my own inner thoughts, both before and now. I continued to read as he told me his story of recovery from that depressive state. I shared my own account, my own physical and emotional recovery which would return me to this amazing life I hold dear. Styron and I worked out quite a bit in that time; collectively, we mapped my plan to start.

So, here’s what I will do
Unwilling to boil my efforts down to stereotypical catchphrases, I’ve chosen to not start anew or start over. I'll just start: each day, each effort, etc. Sure, maybe there is no time like the present, but that will always be the case.

I’ll forgo the cliché: when the going gets tough, the tough get going.
I prefer my mantra: Never Stop… Never Quit…

My focus on medical exams and evaluations, disability paperwork, and benefit transitions are coming to an end. While nagging physical issues, new appointments, and ongoing paperwork will always be part of my routine, they are no longer at the forefront as of today.

I don’t have a Bucket List but I will maintain a Rolling List of activities and adventures I need to experience, for the first time or yet again, this time as a new me or with my family. There are so many places to go and so many things to see. This list will never be complete. I’m renewing my passport; my goal is to fill it up before the time comes to renew again. Brie and I are excited to show Eleanor so much; we’re passionate about new adventures together.

I will not travel because of my MS, nor will our explorations be in spite of my MS. No, my MS will just be there, hanging over me, slowing me down and threatening activities. I will curse my MS, tell it to “piss off” as I forge ahead, and live life when I forget, if only for a moment, I'm not limited by my MS.

I will participate in the fights my MS started. In August, I ride again with Team Amulet for BikeMS (15 years and counting). On Friday, April 14, I undergo my 2nd treatment of medication #7. That Saturday, I walk in Walk MS. My reason for walking this year is simple: I may not be able to next year.

I will project my voice in our community. I hope my lessons, learnings, and fights will support the mission of the MS Society in my role as a board member of the Oregon Chapter. My love and faith will hopefully continue to shape the young souls I teach on Sundays at church.

I will celebrate with others on their journeys: birthdays, graduations, weddings, retirement, your fight for your cause. Life can't be all about me or all about MS.
Finally, I'll write. My writing can't be all about me, or all about MS. Last year, I published My MS and E. Soon you'll see:
     My Puppy and E
     My Family and E
     Air Pressure and E
     28 and E
     Imagination and E
     ...and many other magical children's tales about growing up as a this amazing little girl.
I'll introduce you to Dominic Bandall and Chris Baxter as they face their own fantastic trials forged in my imagination.

Yes, some of my writing will also be about this fight. I’ll need to raise awareness. I'll need to raise money to fund more research. I'll need to vent. Every year, my outreach has a theme. This year, my stories will be the roller coaster of emotions with which I struggle: horrors of disease progression, its loss, debilitation, and the unknown; sparks of hope, some dashed while others still show promise; tales of unending strength, compassion, and support; stories of my dreams and fantasies in this fight against MS. I'll share examples of the benefit your support has already realized, and tales of why we need to do more.

It starts today
I awoke the morning of March 14th, my first day of long-term disability, and told myself, “It starts today”. New life, new focus. I fell (figuratively and literally). My frustrations mounted quickly: ailments, pain, medications, health care benefits, insurance. Life. March 15 - “it starts today”. 16, 17, 18… There were ups, there were downs. Life. I soon realized every day will require the same level of passion and promise. Every day, for the rest of my life, it starts today.

Hope for the best. Expect the worst. Be prepared for both.
It starts today

I guess there are some clichés appropriate for my current predicament!

The fight is not over and it won’t be over until a cure is found.
It will never stop…nor will we
It will never quit…nor will we
This is why we fight!

Never Stop… Never Quit…®

 bike, August 4 – 6: main.nationalmssociety.org/goto/embk
Kevin Byrne
Portland, OR

1 Styron, William C. (2010). Darkness Visible: A Memoir of Madness [Kindle version] (l. 708). New York: open Road Integrated Media
2 ibid. l. 728
3 ibid. l. 771
4 ibid. l. 698

 Never Stop... Never Quit... Reg. U.S. Pat. & Tm. Off.