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 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?
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…®