Friday, September 21, 2012

Hope Floats Redux


As I start to pull myself out of the fog of my monthly infusion, I wanted to provide an update on my annual MRI.
Last Thursday or – the day of the year I dread most – I had an MRI done of my brain and spinal cord.  This scan is very similar to the ones that were done when I was at the Mayo Clinic in May 2008 but now, instead of clarifying a diagnosis of multiple sclerosis, the MRI is used by my neurologist to track the progress of my disease.  Thankfully, the lumbar puncture (spinal tap), also part of the array of tests performed at The Mayo, is *not* an annual rite of passage, too…that was just a one-time test to check my cerebrospinal fluid.
But the MRI lives on each year.  The first 15 minutes aren’t so bad, that is when my brain is being scanned so my body is usually only about half-way into the machine.  After that, it gets pretty tough as my entire body is sent into a tube, just big enough to hold my frame, and I’m required to remain motionless for the entire duration.  Ok, I do get a two or three minute break when I’m pulled out of the tube and a contrast is injected into my arm. Then I go back into the tube for another 15-20 minutes.  Overall, the testing takes a little over 90 minutes. 
It’s not for the claustrophobic and you are subjected to some pretty tough sounds throughout.  Here are some sample sounds that somebody has captured from an MRI experience.  My favorites are “Kiss” and “T2” – he has quite a few of the sounds listed out separately but usually it’s a mix of 2-3 of those at the same time.  They provide ear plugs or music but honestly that really doesn’t make that much of a difference (at least to me). 
I did accept their offer for music and was treated to melodies from artists including:  Celine Dion, The Bangles & Lady Ga-Ga.  I think next time I might just stick with the ear plugs!  Nothing against them personally, I know they are favorites of many, but not really in my Top 100 (or 500?)  To be fair, it probably doesn’t matter what song is on.  The argument could be made that it is better that I’m not reminded of my MRI every time I hear one of my favorite songs or bands…but this experience reminded me of when I had a root canal many years ago.
As I sat there in the endodontic’s waiting room, the movie “Hope Floats” was playing on the nearby TV.  This was before smart phones or other electronic distractions and I was left with either my own thoughts, a Good Housekeeping magazine or watching Sandra Bullock facing some type of mid-life crisis.  Soon, I had a moment of relief when the ending credits began rolling of the movie.  Minutes later, the tape stopped, automatically started rewinding (yes, VHS tape.  Told you this was many years ago) and then started to play again.  Once I was in the chair, I asked the doctor if that was an intentional part of the process – have me suffer in the waiting room so maybe the root canal thing wouldn’t be so bad by comparison – he was confused and said he was a big fan of Sandra Bullock.  Oops.  Anyway, whenever I see a Sandra Bullock romantic comedy (there are quite a few) or any reference to “Hope Floats”, I go running for cover as I try to block out any memory of my root canal experience.
During my infusion this past Monday, Angela and I met with my neurologist so he could give us the results of this year’s MRI.  Last year we had the relief of no new lesions but no such luck for 2012.  I have one in my cerebellum (affecting my coordination, which I have certainly noticed) and another on my spinal cord, which he believes is contribution to some new sensations I’ve been having in my abdominal area.
It’s not fun to hear that kind of news but this is why I’m doing IVIG.  I’m not trying to get over a cold, I’m trying to calm the civil war my body is having with itself and even the best medication can only slow the progression of MS, not end it. 
I wish there was a magic pill to take to make it all go away but there’s not so I just move on…happy there is no MRI for another 365 days, no infusion for another 28 days and excited for what the latest chapter in my life will bring. 
I have a wife to love, kiddos to play with, family and friends to enjoy time around, stories to write, treats to bake, Redskin & Hokie seasons to suffer through (go Nats & Orioles!) – no point in letting a couple new lesions get in the way of that. 
My VHS tape is now rewinding to the beginning and starting to play again.  The results of my next MRI are really out of my hands.  But what I do control is how I want to live the next 365 days – with a smile, truly enjoying life, taking good care of my body and mind.  Then when September 2013 arrives, I want to be able to look back at the previous year with pride of what I’ve accomplished and excitement for what’s to come.

Friday, September 7, 2012

The Leprechaun's Dream

Frankfurt, Germany (1983) --                                                                                                                                                     

It is a crisp Spring day as a sunny morning gives way to a mostly cloudy afternoon.  Six year old Michael is playing an intense game of tag with his two older brothers, Frank and Mark. 
This is not your typical game of tag.  The official name is “Booger Man”.  The objective, as one could guess, is to avoid being called the aforementioned “Booger Man”.  And if you are, then you need to tag somebody else to make them the new King of Boogers.  For these three brothers, on this cloudy day, there isn’t any worse thing in the world than holding this royal title.
The game continues with Frank, frantically chasing his brothers around.  He isn’t having much success.  The more he chases, the more they tease and the more upset he gets.  Soon, Frank zeroes in on his little brother Michael to end his reign as Mr. Boogs.  Unfortunately, there is no one  around with a Polaroid to capture what happened next - and there is still some debate over the specifics - but let’s just say that it ends with Frank finally “tagging” his little bro, four and half years his junior.  Into a tree.   

Ok – this incident was never chronicled by the Frankfurt press; perhaps six years before the fall of the Berlin Wall they had some bigger events to cover.  But – for the record - it doesn’t feel good to be “tagged” into a tree.  Boys will be boys and brothers will most certainly be brothers.  What looks like roughhousing and verbal jabbing is just another way of showing brotherly love.
Returning to Frankfurt…my Mom came outside when she heard me crying to see if I was ok and to figure out what was going on.  I wanted to keep playing so it was less about being a tattletale and more about brushing off the pain so she wouldn’t prematurely end our fun.  She asked if I was hurt and Frank was the first to answer that I was fine.  I lied and said I was ok, too.  My Mom was about to walk back into the house but then she saw a line of something running down the side of my face.  It was blood.  My ear had been split open.

WHEN I GROW UP...

Can’t say I remember much about being at the doctors, getting stitches or how long it took my ear to fully heal.  If you look closely, you can still see the scar.  But there is one thing that I do remember very clearly.  As we rode the bus to the Army Hospital - all I kept saying to my Mom over and over (probably rather hysterically) was, “Am I going to die, Mom?  I don’t want to die…I want to be a teacher.  Can I still be a teacher!?”



Michael, early 80s..






Some kids wanted to be a fireman.  Or maybe a baseball player.  When I was six, I wanted to be a teacher.  Now, I was only six, so I doubt I understood the higher meaning of teaching like helping young minds grow and giving them the skills to really flourish when they are older.   Instead, I thought grading papers was the coolest thing ever and I just loved the thought of growing up and being able to help so many people learn so many new things.  As I rode the bus that day, my biggest concern was whether I’d still live to see the day that I grew up to be a teacher.

 

WASTING AWAY AGAIN IN MEETINGVILLE

Years later, I never lost the desire to be a teacher but my love of numbers (i.e., sports statistics) won out and when I applied to Virginia Tech, I did so as an Accounting major.  After graduating and entering the professional world it was a long path from Corporate Tax at Capital One to Product Management at USAA.  Along the way, I’d always jump at opportunities to help new team members get acclimated at work, be a mentor to interns or younger staff; whatever stoked the teaching spirit I still had burning in me.

In 2003, after working at Capital One for five years, Angela and I moved across the country to join USAA’s Tax group.  I always knew that Tax wasn’t where I saw myself forever.  It was a fantastic vehicle to learn about and understand some of the complex inner workings of a company’s financials.  But my heart rested elsewhere.  Where?  I’m not sure I ever solved that riddle entirely but one thing I clearly knew is that it wasn’t in Tax.
Working in the corporate world might not have fulfilled my childhood dream (does it for anyone?) but I truly did enjoy it every day.  The smile you saw me carry around – that wasn’t fake.  That’s not to say there weren’t a few challenging days sprinkled into my 11 year corporate career (~15, including internships).  I remember one of these moments as if it was just yesterday.

About two years into my job at USAA, I was in a funk and didn’t know why.  As I sat in a conference room, trying to focus on the speaker, feigning interest in the obvious axioms the consultant was reciting, I sank even lower.  Is this what I wanted?  Scanning the room, it reminded me of your typical high school classroom.  Replace the image of teenagers surviving another day until gradation with professional adults counting down the hours until it was time to go home and you are left with very similar results. 
The kid struggling to stay awake is now the professional getting in a quick nap.  The teenager’s passing notes to each other are now sending texts, asking where to go for lunch or perhaps laughing about the dozing colleague.  Some are taking copious notes.  Others look like they are taking notes but are actually working on homework for another class or a business case for another project (or a list of errands they hope to get to after work).  The teenager who raised his hand to ask a question with the sole purpose of increasing his participation grade is now speaking up to appear engaged in the hopes of impressing his or her manager.     

WANNA GET AWAY?

As I sat there, although I was amused by the scenery, I was also saddened by the emptiness that filtered in.  Is this it?  Is this what my future holds?  More ritualistic meetings with empty words, eyes glazed over, minds wandering elsewhere while heads involuntary nod in approval of the subject at hand…really?  And then, out of nowhere, it dawned on me.  It was time for a change.  At that moment, there was only one thing that made sense to me, raising my spirits and giving me hope a different tomorrow.  It was one of those rare moments of clarity that we have in life – I wanted to be a teacher.

I went home that night and told Angela.  It was as if I was retelling the dreams of my youth, because I was.  It wasn’t long before I was researching what opportunities existed in San Antonio and what career/educational changes would be required to realize my boyhood aspirations of being a teacher.  I’m a part-time dreamer but full-time realist. 
Meanwhile, when I had this teaching epiphany, I had also just committed to the M.B.A program, sponsored by USAA, at the University of Texas at San Antonio.  Additionally, a new career opportunity presented itself at USAA and I was quick to realize that the timing just wasn’t right. 

I moved forward with my education and career hoping that one day the timing would be right.  My “a-ha” moment remained as my own little secret, a get-away island to carry me through those days that never seemed to end.  Maybe one day I’d gravitate towards a position at USAA with a heavy focus on educating...or perhaps, someday, after I retired I could work part-time, helping out at a school, teaching history or math.  How and when it worked out was minor to my larger hope that one day I would teach in some form or fashion.

EVEN DETOURS HAVE POTS OF GOLD

This was all before the numbness started.  The vision problems.  The falls down the stairs.  The pains, the tingling and everything else that accompanied my diagnosis of multiple sclerosis.  Accepting that I had MS wiped out many dreams and left little time to think of new ones.  I was now in survival mode, adapting to each new struggle or symptom I faced.
 
Testing out canes, wearing an eye patch while working from home, battling fatigue so severe that, even with medication, it hindered my ability to make it through an entire workday* and trying out another medication to help ease the tightness and pain so I could get a good night of sleep.

(*)Sometimes, if you were unlucky, you might have seen me at work splashing water on my face or giving it a few smacks in an attempt to keep myself alert during the day.
But, life, I believe, has a way of working out.  I’m not going to be a teacher, at least not in the way I envisioned.  But, truth be told, that probably was never going to happen, anyway.  My career was going well and with a growing family it is doubtful I would have risked it all by shifting direction so radically.  Dream big but dream smart.  And, in retirement, it’s much more likely that instead of teaching, Angela and I would have spent time traveling and enjoying our grandchildren, much as my parents do now.

Here I am, almost a year removed from my corporate career and it has again dawned on me that all of those closed doors and extinguished dreams that came with MS have left a beautiful, almost magical, opportunity. The years ahead will no doubt be a struggle, as my children grow older and my MS continues to progress.  But I won’t be going to any meetings, away on any business trips, or frantically working on an important presentation to be made the next morning.  Instead, the energy I do have will be directed towards guiding Vincent and Gianna as they grow and start their own path in academics and everything else that life brings.  I will be their teacher. 

It’s not an ideal situation, I’ll never have the energy I wish I could have, but life is never ideal.  The reality is I’ll be around my children a lot more than I would have if I was in my previous career.  Back then an average work day usually started before they awoke, ended with me getting home with the kids already asleep and that night's homemade dinner cold, on a plate waiting for me to re-heat in the microwave.  Sometimes, I’d hope that the noise and commotion of me arriving back home would wake Vincent or Gigi up, just so I could get a glimpse of them – a reminder of why I went to work that day. 

So now, I’m a writer.  MS Ambassador.  And full-time teacher to our two little blessings. I hope to instill in them my belief that you can be anything you want – but while you take that journey – it will be a lot richer, if you are doing it with a smile

.

In my writings, I often speak to the hidden gifts that I have discovered with having MS.  As I do, I worry that I might come across as too rosy to the reader – almost not a real person – and become a happy go lucky caricature of myself that doesn’t mope, get angry or cry.  I’ve said it before – having MS sucks…it really sucks – but, as they say in business school, that is a “sunk cost”, I have MS and it’s not going anywhere, so to borrow from songwriter Tom Petty:

It's time to move on, time to get going
What lies ahead, I have no way of knowing
But under my feet, baby, grass is growing
It's time to move on, time to get going

And that’s what I’m doing, moving on and finding the positives that are always out there, in every story, every problem we face…that happy ending.  It’s there, it always is. 

In May 2008, at first glance I saw was an impish leprechaun dressed up as a diagnosis of multiple sclerosis but not far around the corner was a hidden rainbow and a pot of gold.  Six year old Michael wasn’t derailed by a trip to the emergency room and nearly thirty years later, his dream hasn’t ended - it’s only begun.


 



Tuesday, July 31, 2012

Don't Be Alarmed


I am on my way
I am on my way
I am on my way back to where I started


 ~Head and the Heart (“Down in the Valley”)

My Mom never learned to drive.  Ok, right before I got my license I remember she got her learner’s permit but it eventually expired (little known fact - that happens if you don’t take the driver’s test).  I don’t remember it being that much of an issue growing up, at least not for me.  I guess you only know what you know and as far as I knew, my Dad drove and my Mom didn’t, that’s just the way it was.
Sometimes, my Dad would go on multi-week international business trips but it was never anything my Mom and two older brothers couldn’t handle.  I remember all of us walking to church, hitting the grocery store for a quick shop (two miles each way) and even on some special occasions, we’d venture out to the shopping mall.  That was a three mile hike, taking us through such exotic locales as East Springfield (if you lived in Springfield, you know what I am talking about.  If not, then you are better off not knowing) and over the intersection of I-95, 395 and 495, which used to be called the “mixing bowl” – just in case you don’t believe me, it has its own Wikipedia page.

On most weekends, though, my Dad was around and a pretty standard Saturday for my parents would be for my Dad to drive my Mom to a mall so she could enjoy her favorite activity -- “shopping”!  (I use quotes, because she rarely ever bought anything when she went shopping.  For most men, this is still a mystery we have yet to understand about the art of “shopping”)  After dropping her off, my Dad would then go to a stamp or coin store (he was a collector) or other times sit on a bench at the mall and work his way through another novel. 
I don’t remember my exact age, let’s estimate it was somewhere between the ages of 10 or 11 years old, and on a few of these Saturday’s while my parents spent most of the day shopping, I was up to something at home.  It was a secret.  In fact, as far as I know they don’t know about this until now.  But there I was at home….my parents out shopping/stamp collecting…my brothers out of the house doing whatever it was my brothers did…and I was at home – baking.  Yes, that’s right, baking.
I’d fumble through one of my Mom’s cookbooks and find the most random recipe that called for the least amount of ingredients (with the easiest directions) and I’d give it a shot.  I struggle to remember anything specific that I baked, this only occurred two or three times but I do know that it was always in the cookie genre.  It wasn’t about rebellion.  Sure, I got the “if you leave, lock the door”, “no friends over while we are out”, “do your homework”, etc. but it probably never occurred to my Mom and Dad to declare “…and Michael, remember, no baking!”  And this wasn’t about feeding myself.  We had plenty of food in the house and nothing I made was edible, anyway.
I just enjoyed it.  The measuring.  The science.  Creating something of your own.  Unfortunately, I had no idea what I was doing.  I’m guessing most unsupervised 10 year olds would have about the same fate. Without much success, whatever short-lived baking phase I went through eventually passed.  It got buried under school work, friends, sports, trying to (usually without much success) make girls laugh at school and other general nonsense that a teenager floats in and out of.

LET THEM EAT CAKE

Around two and a half years ago, I was feeling pretty down about my health.  My new exacerbation's were becoming pretty common, in fact, most days I woke up afraid to stand up, worried that I wouldn’t be able to.  Sometimes, I couldn’t.  There were many instances of my legs just giving out from under me.  I’d try to play it off, hoping the children wouldn’t notice and reassuring Angela that I was ok.  I was struggling with potentially permanent changes to my vision and various other MS symptoms.  It wasn’t the happiest of times and I needed a change…something else besides thinking and worrying about my disease. 

So one day, I decided to bake a cake.  Not just any cake, no, one of my favorites – German Chocolate.  It wasn’t about burying my worries in food, it was about the peace of certainty.  You don’t add a splash of vanilla, no, you add one teaspoon exactly.  In a world of, “not sure why you have MS, don’t know what your progression will be, etc.”, following a precise recipe was a welcome change.  My health, my future had become the great unknown and I craved a sense of order and resolution.  It was time to replace the odor of  doctor’s offices visits with the inviting aroma of a freshly baked cake.  So after a little research, I found a recipe online, picked up a few things at the grocery store and to the kitchen I went.
I’m pleased to say the cake was a success.  That’s the good news.  The great news is the moment I started baking, it was like I was being reborn.  Outside of a couple of those clandestine baking expeditions when I was much younger, this was a largely unexplored part of who I was and it had remained nearly untouched for over two decades.  Think about that.  Am I alone in this?  I doubt it.  I bet most people go through life, missing out on or never fulfilling dreams, passions, hobbies…just because, well, regular life gets in the way.
What started as german chocolate cake carried on to homemade twinkies, apple pie, numerous birthday cakes (including a football field for Vincent and a butterfly for Gianna), Boston cream pie, carrot cake, cookies, fudge, cupcakes, brownies and everything in between – I’ve covered a lot of baking ground since then.  I’ve attempted to replicate some of my Dad’s favorites, using recipes passed down from my Grandma (and I hope I’ve done her justice).  I had the pleasure of baking my Mom one of her favorites, Black Forest cake, on her 70th birthday.  As a family, we’ve started new Christmas traditions of baked goodies.  On a few occasions Vincent has been my helpful baker in-training – we even have matching Redskins aprons.  The special moments and memories are priceless and I look forward to what the future brings to this part of our lives. 


 

A NEW ME

My writings have done much to document the hardships that come with having a chronic disease like multiple sclerosis.  The symptoms can fill a book, but aches and pains dull in comparison to the larger picture - guilt for not being the husband I had set out to be on the day I said “I do”, realizing that I’m not going to be the father that I had always hoped I would be, seeing my career put to a premature end; those are just some of the heavier issues that weigh on a person that is diagnosed with MS in his early 30s.

I write to help bring awareness and understanding to multiple sclerosis.  It is a very hard disease to understand, for those that have it and even for those that treat it.  But to highlight only the darkness wouldn’t give an accurate representation of my life.  MS may take many things and I choose to not tempt fate by presuming that it won’t take more.  But one thing I know it can’t take is my spirit, my zest for life and my belief that every day is a new day to be a new you. 
This isn’t a self-help blog entry, I’m not that guy.  This is about showcasing how a disease that has torn down so much, has also left in its ruin a second chance to become a new me.  I know I would have never started baking if it wasn’t for MS and the intrinsic rewards it has provided reach far and wide:  a new avenue to foster creativity, bond with my children and the chance to shower family, friends or Angela’s co-workers with baked goodies.  Best of all, it’s given me an opportunity to continue the tradition of some of Grandma Wentink’s recipes, in her honor and warm spirit.
I’m not starting a bakery tomorrow.  I have to keep this a casual enjoyment, my body wouldn’t allow anything more serious.  We’ve made the kitchen MS-accessible, bringing in stools while I bake to eliminate most of the standing required.  I have a drawer and cabinet dedicated to only baking so I don’t have to spend energy pacing the kitchen for tools or standard ingredients.  We make sure to schedule rest before and after I bake because even a small amount of time spent in the kitchen can drain me.  Often, when needed, Angela is on call to help give me a break – for example, cutting up strawberries or scooping out dozens of cookie dough balls and, most important of all, the clean up. 

I can’t cure myself.  I go to my treatment, I try to eat right, be active when possible, staying as healthy as I can.  But MS isn’t going anywhere.  Becoming at peace with this has allowed me to let go of who I was and start on the journey of who I now am.  I don’t say this for dramatic effect, or to overstate the light that baking has shined into our lives.  For Father’s Day this year, Vincent made me a present at his school.  A question was posed to VIncent, “What makes Daddy the best?" - his response, below, was as surprising as it was touching. 
We all live day to day not knowing what tomorrow will bring.  Having a chronic disease like MS highlights this paradigm; it’s an alarm clock that won’t go off.   Some might view the constant beeping as a warning sign of potential trouble ahead.  I can’t and I refuse to see it that way – my “alarm clock” is a reminder that every new day is a gift, a day to be a new you – and sometimes that new road leads you right back to where you started.

 


Wednesday, July 11, 2012



Humpty Dumpty sat on a wall,
Humpty Dumpty had a great fall.
All the king's horses and all the king's men
Couldn't put Humpty together again.



28 Days Later


Angela and I never had “the talk”.

You know, the whole “Are we exclusive?” or “Let’s define our relationship!” exchange that most dread and for some couples might work more as a bad luck charm than a step forward. Our friends teased us about how we were “just friends” although it was clear to all (including us) that we were anything but. Why fix what’s not broken? It didn’t take long for me to realize I wanted to marry Angela (the first night we hung out together) but I figured it was better to keep things “breezy” than make any declaratory statements about how she was going to be my wife one day. So, almost overnight, we went from friends that “hung out” pretty much every day to Angela telling me the night of my friend Randy’s wedding that she wanted “to be next!”

And so she was. Sure, I was wearing a tux that night and gave the greatest best man speech ever known (*) and that might have contributed to her request. There was also an open bar. But really, she was just saying out loud what we both knew already.


When the magic happened...


(*) Ok, maybe not the greatest. But certainly in the Top 10 of Best Man Speeches given in Ashland, Virginia on October 2, 1999.

Although we didn’t have “the talk”, we certainly discussed our future together. Our dreams. Where we wanted to be in 10, 20 or 30 years. If we wanted to start a family. How many kids? What kind of parents we wanted to be. Thoughts on finances. And most important of all, our mutual dislike of mushrooms. But this process wasn’t perfect and some things didn’t get fully fleshed out until after our marriage.

I‘m a fan of scary movies and soon learned Angela most certainly was not. I’m not sure how I missed the clues - she had nightmares after watching “The Sixth Sense”. Angela did graciously give it a try but honestly watching a horror flick isn’t that important to me – it wasn’t meant to be and watching anything from that genre for me is now a thing of the past.

One of our final attempts was the movie “28 Days Later”. I don’t remember a whole lot about the movie (it was ten years ago!), but I think it went something like this - virus that turns people into zombies, with only a few survivors who attempt to save civilization, etc. – can’t even remember how it ended but I'm pretty sure there was a sequel a few years later.

NOT A WALT DISNEY PRODUCTION


Little did I know in 2002, what a defining mantra the term “28 Days Later” would be in my life a decade later. Ok, so there is (thankfully) no flesh eating bacteria or zombies in my “28 Days Later” but it is not quite a Walt Disney production, either.

Every 28 days I have my IVIG treatment.

For me, the most frustrating part is the impact it has on my family. Everything Angela and I plan – grocery shopping, date nights, vacations, Vincent’s soccer practice/games, Gigi’s gymnastic, holidays, friend/family get togethers – everything – revolves around my “time of the month”. And it’s not like living with MS doesn’t already require us to live like this but it adds a whole new dimension.

Here is a peek into “my time of the month”.

FEED ME: DAYS 25-27


Usually two or three days before my next treatment, my body runs out of fuel and is not shy about letting me know. How it tells me might vary month to month but the primary way is through pain. But this discomfort is a more unique brand than my regular MS fun. For example, my lymph nodes get really sore and tender. Sometimes, this tenderness spreads to the rest of my body, almost as if I have the flu.


My legs get a case of the “twisties”. Imagine a loaf of bread that you just bought from the grocery store. At the top is a “twist tie”, used to keep the bread fresh after using. The best I can explain is that it feels like somebody is taking some of those twist ties and tying them around the veins in my legs and well, twisting them.

twist, twist go away and don't come again some other day

I won’t list out an exhaustive list of my other “Feed Me” symptoms; what’s relevant is that they serve as a not so subtle reminder that my next treatment is near. 

 

DADDY GETS HIS MEDICINE: DAYS 28-29


I don’t remember a lot about my first treatment. I was still working at USAA and had intentionally scheduled it the first few days of the month, around the time that my team would be waiting on financials to be completed, monthly product #’s to be released, etc. – the proverbial calm before the recurring month-end storm. That wasn’t my biggest worry; the more pressing issue in my mind is how I was going to explain my new schedule to Vincent. Gigi was too young to sense any change but Vincent was another story. Sometimes I think he knows our daily routine better than we do. This is back when I worked from home on Monday, Wednesday and Friday, so when I left early in the morning – for three days in a row – he knew something was up (I’ve since graduated to finishing my treatment in only two days).

I thought I was protecting Vincent by telling him that Daddy had important work meetings to head into the office for but really I was just making myself feel better. Feel better that I was taking time off work. That the progression of my MS required more aggressive treatment. I wondered, how I would I react to the treatment? Would I be able to adjust back in time for my job? Would the treatment help or would I continue to get worse? What will my wife think, sitting there watching an IV drip into me over a period of 4-5 hours for three straight days? I remember not being able to look Angela in the eye those first few treatments. I don’t want to say I was ashamed of it but maybe I was…what I do know is that it was far from any future I had envisioned.

Running on, running on empty
Running on, running blind
Running on, running into the sun
But I'm running behind


WALKING ZOMBIE: NIGHTS 28-29


During my now two days of treatment, I’m a walking zombie – but not like in the movie -I use that term as my Mom used to when I was much younger. She would tell me that I shouldn’t stay up late or the next day at school I’d be a “walking zombie”. Not sure about back then but no doubt it is certainly applicable now. I’ll return from my treatment around noon and basically just lie down in bed until Angela and the kiddos get home. I don’t really sleep, its more exhaustion, my body doesn’t want to move and lying down provides a sort of comfort. At night, I try to hang with the family but usually I’m having a hard time keeping my eyes open (it’s not about sleeping, it’s about having the energy to keep my eyes open!)

GUMMY BEAR ICE CREAM FOR DINNER? DON’T MIND IF I DO!



Yes, please!
Eating – well, I could do a journal entry on my appetite alone. Let’s just say that during these the two days of treatment and one to two days after treatment it is quite bizarre. Usually, I don’t have an appetite for much. Of my usual dinner portion, I’ll maybe have about ¼. But that is if I can stomach what is even in front of me. I’ll usually crave odd items – which have varied by the month – gummy bears, chocolate bars, ice cream or maybe salty chips. Angela would ask me what I want to eat and there is not one meal that would ever sound appealing to me. Usually by the day or two after my treatment I need a big cheeseburger…or some waffles (protein vs. carbs – again, it varies by month) to act as the meal to start re-charging me.

We no longer tell Vincent that Daddy is going into the office for special meetings. Obviously, I’m not working anymore but I stopped before I left USAA. The night of my very first treatment, Vincent and Gigi came running inside the house to find me. I was upstairs lying down in bed. Vincent led the charge into our bedroom and the first words out of his mouth were “You are the Incredible Hulk!” It took me a moment to realize that he was referring to the green bandage I had on my arm from my treatment. I realized at that moment that I was going to be just fine with my monthly infusion. Vincent turned all of my anxieties about my IVIG treatment on its head – instead of feeling shame, I was his super hero. And so I’ve been, month after month, from The Hulk to Silver Surfer to Iron Man.

DADDY GETS HIS GROOVE BACK: DAYS 1-4


Start of the new cycle. Lots of rest and recovery. Elation that another months treatment is over. As much as the days leading up to my next treatment are spent with dread, disappointment about all the things I haven’t accomplished during the previous 28 days, my days are now filled with hope and optimism of the bright days ahead.

It’s a bumpy road to recovery. Imagine the worst flu you’ve ever had – that’s how the side effects were described to me before my first treatment -and it’s a pretty accurate description. Now imagine having that flu 12 times a year. I used to create Excel spreadsheets to support business decisions at work, now I have one to track my monthly IVIG infusions.

Beyond the physical ailments, is an emotional toll, seeing the role Angela must shoulder while I’m “checked out” during this week. Vincent and Gigi, the little bit of innocence that is lost each time they see their Daddy get his medicine. They are much too young for me to explain the why but they know their Daddy is like “Humpty Dumpty” and I need time and help to put myself back together again.


This wall seems sturdy, what could go wrong?


EPILOGUE


As dreadful as this period is, it is a blessing that we’ve finally found a treatment to give the progression of my MS pause. And that’s a relief. Before I went on IVIG and took an early retirement from USAA, my life with MS was becoming a “based on a true story” horror flick but it didn’t have a runtime of 90 minutes, there was no popcorn, no over air-conditioned movie theater and certainly no Mike & Ikes.




Wednesday, February 22, 2012

2012 Walk

Please support my Team, Comfortably Numb, at this years Walk MS: San Antonio on March 3rd, 2012. Last year, our walk team finished 4th overall in the San Antonio area and was 1st overall for non-corporate sponsored teams!!

As most of you know, 2011 wasn't a good year for the progression of my MS but I'm no less inspired in my quest to raise awareness and education about multiple sclerosis.

Click here to access my page for Team Comfortably Numb. Donate or even join my team -you don't have to walk in SA, you can walk ANYWHERE! Ask me for more details on how...

If you are on Facebook, feel free to "like" our Comfortably Numb in SA page, which will focus on my blog and continued efforts to fight MS.


Best Wishes to All -


Mike, Angela, J├Ąger, Vincent & Gianna

Tuesday, February 7, 2012

IVIG - One Year Later

As written during my treatment earlier today -


As I sit here, battling my disease with my monthly infusion, hoping the next 4 hours today and 5 hours tomorrow will limit any further damage, I look around the room at the other MS patients knowing that we each have our own story. Ailments that we are living with, hopes, fears, date of diagnosis, single, married, parent, grandparent; truly from all walks of life...

The Kid

He looks like he is only 19 or 20. Tall and athletic looking, he comes in each month with his Mom on one side and a white cane to help him walk on the other. MS has severely limited his vision, left him nearly blind. They are hopeful the medicine will restore some of his vision. Just a few years ago, his height and athletic skill brought cheers from classmates, friends, family and teammates on his high school basketball team. The cheers have faded and he casually mentions that he wishes he wasn’t so tall, there are no winning baskets to score now, only obstacles to avoid walking into. His Mom is always by his side, helping, talking to others, asking questions, making sure she is doing all she can for her son - doing what Mom’s do. But when the nurses ask if there has been any improvement from the last month, I sense the heartbreak in her response back to them. Angela and I are plagued by guilt if Vincent or Gianna are sick and coughing through the night – it’s a sense of helplessness – but their coughs eventually go away, MS does not.

The Mom

She talks about her kids a lot. How they help Mom out, making sure she is out the door on time for her monthly treatment. She was diagnosed at the hospital when her first child was born. Her parents, brothers and sisters, friends – they all came to visit to celebrate the birth of her newborn. She made the choice with her husband not to tell them then, didn’t tell them for about a year. She didn’t want her family to view their baby as linked to her disease. Like one caused the other. She had symptoms for years before giving birth but her fear was that her family wouldn’t understand. As she tells the story, the hesitation in her voice, the facial gestures and nervous laughter - I get the feeling she is worried they still don’t understand.

The Old Guy

I wonder how long they have been married for. She brings crosswords to help the time go by. They are both probably in their 60s. (He reminds me of this guy I used to intern with. Older man, a bit overweight. Whenever you ask him how he was doing he’d reply “Pretty good for an old fat man!”) The man hooked up to the IV is older but not overweight – in fact, I hear his wife pester him in front of the nurse about needing to eat more. Eating isn’t high on his priority list during his week of treatment. I understand this. Sometimes you are hungry, sometimes not. Sometimes all you want is gummy bears to eat, other times it is a chocolate bar. Or, the thought of eating anything makes you cringe. Last month, I could not stomach the thought of anything other than a cheeseburger. Why? Who knows, but Angela went out and got me a cheeseburger and it hit the spot. No fries, no sides, just a cheeseburger. Other months it has been pancakes. Who knows what this month will bring? So it’s not his weight that stirs the memories, it’s his humor. Each morning the nurses ask him how he is doing and he responds with a smile and chuckle “Pretty good for an old guy with MS!”

The Professor

He says he used to teach. Not sure what his area of expertise was but I know he was a college professor. First time I saw him, he reminded me a lot of my Statistics professor in graduate school – Dr. Xu, not because of his ethnicity but his demeanor. Engaging, very professorial. Wry humor but you get the feeling that if you attempted to make a pop culture joke, it would go right over his head. This man is too busy solving for X to watch any reality television. The nurse interrupts us and lets the professor know that he will have a quarterly check-up during this month’s infusion. I see the look on his face and I know it well. He silently asks if she will show him the way because he doesn’t want to get lost. The neurologists offices are just down the hall, make one right and you are there. The nurse says she will be back in a few minutes to take him and the moment she leaves he quickly explains to me that normally his wife is here but she was only able to drop him off this month. He doesn’t need to elaborate this point, I understand. The vertigo can be awful. The memory lapses. Where am I? How do I get back? I have stories of date nights where I’ve had to call Angela to remind me how to get back to the table after using the restroom and yes, this was before consuming any “beverages” :). It’s embarrassing but it’s my reality. And my situation pales in comparison to our professor. He doesn’t drive and rarely is out alone. When he leaves for his appointment, he smiles and says “Wish me luck” and I know he wasn’t talking about his quarterly check-up.

28 Days Later

The statistics may tell a story of who is most likely to get MS but each month during my treatment I see old, young, black, white, men and women – MS does not discriminate.

My time is up, its time to head home for the day. Half way done! I'll thank the nurses for their help, say my goodbyes and look forward to Wednesday at ~12:30 p.m. when I'll have a 28 day break until the next time.

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