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.




1 comment:

  1. "And you say she's just a friend, and you say she's just a friend. oh baby, you... :-)" I just recently came across some pics of that OBX trip when you were "just friends." You know the one where it flip-flopped between Arctic Breezes (thx Randall) and Sahara Desert (thx Wentinks!). Thanks for sharing your thoughts with us....it's always hard to talk about the 800 lb gorilla in the room so reading about it is helpful for those of us who tiptoe around it. And kudos for the shout-out to the Center of the Universe - Ashland. PS - It WAS a pretty good best man's speech...to this day, I can't hear the term "Math Book" without thinking of well, you know.

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