Wednesday, October 19, 2011

October 2011 Update

Hope springs eternal in the human breast;
Man never Is, but always To be blest:
The soul, uneasy and confin'd from home,
Rests and expatiates in a life to come

-Alexander Pope, An Essay on Man.


Almost overnight, Fall has arrived in Texas. Cooler weather, football season, the start of some of my favorite holidays (Halloween, Thanksgiving, Christmas) and a household full of birthdays (Angela, myself and Vincent – all nestled in the month of December).

When I was 9, I dreaded September and the unfortunate return to the school year. When I was 19, this opinion reversed as the end of summer meant a return to Blacksburg and a new semester of college. After college, I entered the “professional” world and began my transition to a world without school and initially I actually felt a bit of emptiness when September revolved around project deadlines at work instead of a return to academia. Eventually, the “professional” world became my new reality as memories of “back-to-school” faded.

In my late 20s, I decided to merge the two, working full-time and going to grad school at night – I’d love to share my Fall memories of those two years but honestly it is all a blur. I’m not sure how I managed that, or if it was even me…the extent of my Fall memories was trying to avoid signing up for a class on Thursday nights as to not interfere with any Virginia Tech football games (priorities).

But now it is Fall 2011 and grade school, college and even grad school are a distant memory. What usually marks the beginning of cooler Texas weather, the return of Hokie & Redskin heartbreak and the advent of the holiday season, now coincides with an important new chapter in my life.

Earlier this year, I began a new therapy, to treat the progression of my MS which had become more aggressive (through new exacerbations & new lesions identified in my 2010 MRI). There is no appeasement with MS, so we fought back and so far IVIG has been a success. Remarkably, I’ve had no relapses since beginning my new therapy and my latest MRI (done in late August) showed no new brain or spinal lesions.

That’s the good news. The other part of the story is the damage that has already been done. Unfortunately, there has been no relief to my current ailments and in mid-September my medical leave became classified as a “long-term” disability (or, as my neurologist called it, permanently disabled).

I’ll have a lot more to write on this but wanted to give you all the latest update. Thank you to everyone for your kind words, cards, emails, everything – I’m doing well and am at peace with the new direction my life is going. Where is that exactly? I have no idea. But what I do know is that my primary focus is continuing to wage war against my disease to prevent any additional setbacks in my health. I may no longer work in Product Management at USAA (and it is with great difficulty that I type those words) but I’m still a husband and father – and for me, this Fall springs eternal.

Monday, May 2, 2011

Healthcation

Tomorrow, I will go in for my fourth IVIG treatment. So as I type this I’m loading up on liquids, organizing some reading materials to keep me company while I’m “hooked up,” and trying to get some rest since the ten hours of treatment, over two days, tends to leave me pretty exhausted after it is complete.

Now, that’s the easy update. The not so easy update is that for the past four weeks I have been on medical leave from USAA. Medical leave sounds very technical and not very descriptive so in an effort to add some color to a gloomy situation, I refer to it instead as a “healthcation.”

I’m not looking to make light of my situation, but vacation is defined, in part, as a period of suspension of work, usually used for rest and by late March, I could no longer ignore my body pleading for relief.

The deteriorating vision in my right eye (detailed in this post), is one of the factors that led us to trying IVIG as a more aggressive treatment for my MS. As February drew to a close, my eyesight was becoming worse. Fluctuating changes to both my eyes became a weekly occurrence. Sometimes, my left eye started to get cloudy, later returning to normal; while my right eye got even cloudier (to the point of being able to see very little) until reverting back to its current, limited function.

My eyes were playing tricks on my mind as I’d be pressuring myself to continue business as usual with my job: reading an article, reviewing a presentation, etc. Reading leisurely is significantly different than focusing on a business case and often I’d find myself getting dizzy, nauseas to the point of even vomiting once (or was it twice?) at work as the room was spinning around me.

Who was I kidding? I’ve discussed this journey before; I’m not Superman and pushing myself to the brink only does more harm to my body and nobody hands out trophies for recklessly endangering your long-term health. That’s not being a warrior, it’s being stubborn and neglectful to the reality staring right at me – I was getting worse, not better…am I going to wait until I wake up one day and have NO vision in my right eye?

Whether it is the constant pain in my legs, vision issues, managing ever increasing fatigue – and the cognitive hurdles that resulted from these and other symptoms – I knew the time had come.

Friday, January 28, 2011

IVIG

Just a quick update --

On Monday, I will begin a new treatment called Intravenous Immunoglobulin (or IVIG). My neurologist recommended IVIG based on the results of my latest MRI results and the magnitude of my relapses during 2010. He believes my MS is a more aggressive form of relapsing-remitting and wants to go on offense against the disease. Naturally, I was quick to agree.

IVIG will be administered to me, once a month, over a 2-3 day span. The number of days and hours it will take each day depends on how my body reacts to it. Our plan right now is that I will go to the infusion center (located on the same floor as my neurologist) on Monday and Tuesday and it will last about 4-5 hours each day. That's the best estimate right now, anyway. I still take my daily injection of Copaxone; IVIG doesn’t replace Copaxone, it just joins the battle to fight MS.

IVIG isn't an "MS drug”, in fact, it’s not FDA approved for multiple sclerosis. It's more commonly used in leukemia and is also in Phase III test for Alzheimer's. However, it is used "off label" for multiple sclerosis, often when the patient's current therapy option is not performing successfully.

I will be loading up on liquids (water and more specifically Gatorade) starting this weekend in advance of Monday to hopefully offset some of the common flu-like side effects.

The objective of starting this new therapy isn’t to “cure” my MS, unfortunately no drugs like that exist yet. Rather, several European studies have highlighted various benefits of IVIG therapy for MS patients, including a reduction in relapses and lesions while showing an improved or stable neurological state and overall quality of life.

Catch you on the flip side.

Tuesday, January 25, 2011

Happy New Year!

IT WAS THE BEST OF TIMES…

And what a year 2010 was…Vincent transformed from a toddler into a little boy and Gianna started walking, talking and each day growing more and more into a twin of Angela -- just as her Dad had feared. If only she looked more like me, I’d have a lot less to worry about when she becomes a teenager!!

Angela finished another year working part-time at the MS Society and full-time as Mommy to Vincent and Gigi. In addition to managing the household and taking care of her four babies (J├Ąger and I finish the quartet), Angela added yet another dimension to her life – running. What started off as a quest to get back into an exercise routine eventually progressed into running her first race, a 5K, in October. Since those 3.1 miles were a breeze, she decided to up the ante, with the urging of her running partner, Carolyn, and will be taking part in a half-marathon next month. Wow! To say she is an inspiration would be quite the understatement and it would be impossible for me to be any prouder of what she has and continues to pursue/accomplish.

…IT WAS THE NOT SO BEST OF TIMES

For my buddy, multiple sclerosis, 2010 was also quite the eventful year.

Unfortunately for me, that means I lost a few battles but I also realized I’m never going to lose the war.

There’s a lot to cover and I’ll start with yet another encounter my eyes had with optic neuritis. I used the plural form intentionally because it started off with my left eye and eventually worked its way to my right…and unfortunately decided to unpack its bags and stay awhile.

With each new morning, I await the bag of goodies to open from MS. Usually, the first few minutes involve me just laying there and – as I explain it to Angela – “put Humpty Dumpty back together.” Some mornings all I can feel in my hands is the prickly and tingling sensation that encircles them. And others, it’s my legs or feet leading to a leisurely beginning to my morning as I gingerly take my first few steps, either dragging my leg or bracing for a fall when/if my leg gives out. Thankfully, by mid-morning, these symptoms have dissipated a bit and I return to feeling somewhat human.

MS-DAR

So it wasn’t that surprising to me in mid-August when I woke up with pressure around my left eye. I knew this feeling, like somebody had punched me in the face the night before…the pain is throbbing but manageable. Or maybe I’ve just gotten used to all of these strange sensations and they’ve become the new normal? Either way, I knew something was up - my MS radar had gone off. I’m extremely careful about how this radar/alarm is calibrated, too. If you review through “typical” MS symptoms you’d quickly learn that (1) nothing is typical, although there are many similarities, everyone with MS lives it differently and (2) just about every poor experience your body has, could or could not be related to multiple sclerosis. This disease impacts our brains and spinal cords and because of this it could impact nearly every aspect of our daily living.

So, if I have a headache…is it MS? If I trip on the stairs or lose my balance…is it MS? If I get dizzy and need to sit down for a moment to collect myself…is it MS? While many of the symptoms are pretty easy to identify as MS there is also a long list of ambiguous, grey areas and I like to use caution first before just attributing it to multiple sclerosis. It’s not denial or some badge of honor that I wish to boast about…it’s actually an attempt at self-preservation. If I lived each day, fearing what is coming around the corner, or associating each ache, shooting pain, numbness or other oddity I experience to MS, I’d never have internal peace and that is one thing that MS can never take.

VISION QUEST

Over the past few years I’ve had my share of eye problems. Throbbing pain around my eye socket. Blurred or kaleidoscope vision. Flashing lights. Vision so sensitive having a light on in a room feels like somebody is literally digging a screwdriver into my eye. Even momentary loss of vision. So it’s not shocking to me when they happen (it would be if they didn’t!) but this time I knew something was different. I like to call those eye symptoms “residue” from a previous MS relapse.

Reminder --- I’m not a doctor, just a guy with MS. So I make up my own terms to help communicate this world to others but often it helps explain it to myself, too. I didn’t get recurring blurred vision, etc. before my diagnosis of optic neuritis in 2008. I got it all at once and more. I was treated and things got better but there is always something left behind after these exacerbations and I like to call that “residue” or residual effects. So life goes on but I get constant reminders and on that scorching August morning, as I felt my eye pounding, I knew something was different.

A few days went by, the pain continued and even got worse and my vision began to be routinely impacted. Later that week, I had an appointment with my neurologist. It was a routine check-up but also we were going to discuss the results of my latest MRI, to see whether my MS has been progressing, getting better or staying the same. I didn’t want to go into my appointment with a half-story about how I think I have optic neuritis (ON) again so we set up an appointment with my ophthalmologist and, not surprisingly, was diagnosed with ON in my left eye.

I wasn’t hoping to get this answer but it was helpful to have confirmation of ON when I met with my neurologist. Since the ON was “manageable” (my description) we decided to hold off on any treatment for it. I knew the next step would be an IV steroid treatment and that just wasn’t high on my list of things I really wanted to do. Yes, my eye was bothering me but also around that time I was very sick. Not MS sick (although sometimes I can’t tell between the two) but feverish, night sweats, every bone in my body ached, couldn’t get comfortable in any position other than just lying still on my back with a wet rag on my forehead type of sick. I was being treated by my primary care doctor for this at the time (this fun story is for another blog entry) and I just couldn’t imagine being strapped down and taking an IV – my eye was bothering me but it wasn’t to the point that I thought needed treatment, at least not yet. We agreed that I’d closely monitor my eye and be in touch with him immediately if anything got worse.

The good news is, my left eye did get better. The bad news is I wasn’t fully healed - the ON just moved to my right eye. I feel like it happened overnight. Literally.

ONE HEADLIGHT

“Daddy. Daddy! Daddy, let me tell you something. In my dream I had a truck, a big truck and there was a puma in the backseat and my sister was in the front seat. It was my truck, it was blue and it went really fast and...” – that’s how the morning started off for me, Vincent coming to my bedside to tell me an elaborate story about the dream he had during the night or maybe just random musings of his. If Angela and I were smart, we’d write down each one of his “screenplays” and create a blog that will one day be turned into a TV show a la “Sh*t My Day Says,” renamed something like “Stuff Vincent Says.” This particular morning, as Vincent entered the “I’m a puma today, Daddy” part of his address, I noticed something way off with the vision in my right eye. I tried closing and then re-opening my eye several times, washing my face, anything to snap my vision back into place. As much as I wished my impaired vision was just a loose eyelash or a function of me still waking up it was not meant to be. The ON had moved from my left to right eye and five months later it still hasn’t recovered.

Remember when you were little and were amused or curious about everything no matter how ordinary or fascinating it might appear to adults? Having two kiddos is a constant reminder of those days, finding hours of enjoyment from just playing in a box or building a fortress out of pillows. Now imagine you are eight years old again and looking at yourself in a mirror. You’d breathe really hard into the mirror so it would fog up and then you could draw a smiley face or maybe write something silly? That could provide endless amount of entertainment! Ignore the smiley face or inappropriate word choice for the moment and go back to the fogging up part. When I was awoken by my puma son that morning - the fogged up mirror image in your mind – that’s what remained of the vision in my right eye and continues to this day.

When this was all happening, I was having a hard time explaining the exact vision problem I was having to Angela and then I found something online - another individual had encountered the same issue as me and he had actually doctored a picture to serve as a visual aid. The moment I saw it, I knew it was optic neuritis...I've posted it below since in this particular situation, a picture might speak better than words:





Can I drive? Sure. Do I drive a lot if I don’t need to? No. Can I work? Yes. Does it require adjustments? Absolutely. Often, when working at home, I wear an eye patch over my right eye…almost as a form of relief. Trying to review a presentation with colorful graphs or reading a business case will result in dizziness and nausea, best case, without a patch covering up my right eye. If I’m in the office, I find an office product nearby (or usually just my phone) to cover up my eye to assist in whatever I’m trying to view. Can I type? Well, I'm writing this blog but it's not without the obvious challenges. Thankfully, my days in the office are usually spent in various meetings instead of sitting at my computer reading through emails, etc. so I don’t have to work around it as much.

But walking around leads to other fun issues. Yes, I can walk and see in front of me – remember, it’s fogged up – but I really don’t have peripheral vision and what I do see in front of me while walking is sometimes a struggle. If somebody is walking up to me I usually don’t know who it actually is until they are right in front of me. One time, I got on an elevator at work and didn’t even see an individual to my right until they happened to say something. Walking into a grocery store, attending my son’s basketball game, anything with a sizeable population and lots of moving around – that’s pretty much a zoo. I have to stay laser focused on whatever my objective is, whether it’s buying some bananas or cheering on Vincent to score a basket. My eye doesn’t have a lot of energy, or ability, to accomplish much more.


ROIDS WITHOUT THE RAGE

As soon as my vision became this impaired we called my neurologist and set up a steroid treatment. Obviously, my hope was to fix my vision but beyond that, I wanted to protect it against any further damage. I won’t go into the medical details, I’d fail miserably if I tried, but let’s just say that unfortunately, the steroid treatment doesn’t automatically lead to repair.

The next three days I went in to the infusion facility, got hooked up to an IV for an hour or so and then went on with the rest of my day. Once I finished up my third and final session, the clock started ticking for me…..constantly giving myself eye exams…has it gotten better? Worse? Tick . Tock. Tick. Tock. Nothing. No change.

THIS GUY SURE IS A DRAG

2010 was a difficult year. My experience with optic neuritis and continued eye problems only scratches the surface. Sometimes it’s hard to admit my struggles to others. They might ask how things are going and I’d rather not be the MS Guy…the downer…I’d rather the focus be on them, my kids, Angela – who wants to be friends with, or be part of a family with somebody that always throws the wet blanket on conversations or fun get-togethers? I want to bring happiness into others lives, through kindness or humor. I want my family to be proud of my accomplishments. My parents, somehow, survived the insanity and raised me and my two brothers so they deserve the best and I want to deliver that for them. This is the guy I want to be. Not the MS guy. Waking up every day, not knowing what was going to hit me next, then absorbing whatever new ailment did introduce itself, made it very difficult to be the person I wanted to be.

It began to sink it, my vision may never recover. My left leg still limits my mobility, making it uncomfortable to stand for long periods of time and near impossible to find comfort when sitting down. My MRI results came back and the news was not good. My disease continues to spread in my brain and spine and my doctor is recommending more aggressive treatment. I got mono (again). I….could….go….on….and….on…and….on…and..on….and…on but then, something happened. I had an epiphany and it was in a place I least expected it.

ANGELS IN THE PARKING GARAGE

Most weeks, I work from home three days and the other two I’m in the office. Those days in the office are bittersweet. Being able to interact with my co-workers in person is medicine in its own way since working from home can be an isolating experience. Going into the office results brings positive energy from feeling somewhat normal again and the best part is – even on the worst days – I feel a tremendous amount of pride, just for surviving the grind. But it’s also a constant reminder of my physical limitations. The bright, artificial lights that pierce my eyes, always worried about getting dizzy, needing to sit down, taking medicine when I feel my stomach starting to twist and walking around to different meetings has me, by the end of the day, feeling like I was in the ring with Mike Tyson for a few rounds.

It was mid-October…I can’t remember the specifics of my day in the office, but I do recall feeling even more worn down than usual that night as I went down the elevator to the parking garage. My company has a turnstile that we exit through, after scanning our badge, to enter the parking garage where our cars await. As I exited the turnstile and stepped out into the cool autumn night (note for non-Texas readers, this is probably right around 62 degrees)….something happened. As the wind blew lightly in my face, for a moment, I did not feel alone. There were no words spoken to me. They didn’t need to be. This wasn’t an alien abduction. This wasn’t the product of recreational drug use. Warmth. Bliss. Inner Peace. I don’t know if it was angels speaking to me but I’d like to think so. Whatever it was, it provided a moment of clarity and I was the gracious recipient of a few more over the next several weeks.

I’ve done a horrible job keeping up with my blog and it’s my 2011 New Year’s Resolution to change this and hound you all with many, many, many more entries before we bring in 2012. If Angela can train and compete in a half-marathon, then the least I can do is make this work. One entry I’ve still yet to make is our trip to The Mayo Clinic where I was officially diagnosed with MS. It was there, at the Mayo Clinic, that we had our initial conversation about multiple sclerosis with a doctor, a thousand miles away from San Antonio in Rochester, Minnesota and he stated that “what they don’t know about MS far, far outweighs what they do know. You could wake up tomorrow and be symptom free for twenty years or you could wake up tomorrow and be in a wheelchair.”

It’s a chaotic existence, not just for me but for my wife and children, too. How will Daddy be today? Will Michael be able to help out with Vincent and Gianna this weekend? It’s within this backdrop that I’ve had an internal struggle in my own mind ---- what is going to happen next?? What is this disease going to introduce or take away from me tomorrow? Tonight? Three minutes from now?
This struggle provides no lasting positive value and on that October night in the USAA parking garage I realized that it just doesn’t matter. This disease might never return the full vision that it took from my right eye. Tomorrow could bring new limitations or expansion of other ones I currently have. I’m not happy about this but it’s time to move on from my constant worry about what this means, what might happen tomorrow, what impact this will have in 10 years, etc. etc. etc.

TIME TO MOVE ON

I’m oddly at peace with it all but it’s not surrender. Far, far from it. If I could take a magic pill and make it all go away, I would. But I can’t, so that’s life. I see various medical professionals many times throughout any given month. I’m taking a Copaxone injection each night and have my other daily pills to choke down each morning. I even have to take a pill (muscle relaxer) so I can sleep at night. I’m fighting this thing head on and then letting the chips fall where they do. I don’t know what tomorrow will bring – none of us do in our lives – and that night in October I had that moment – and decided to enjoy the NOW. It was time for me to stop deliberating about the “what-ifs,” and in the process found inner peace with whatever MS throws at me next.

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