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.

6 comments:

  1. Hi mike. Mris stink , the next one I get, im doing the valium. I dont like meds but I really got antsy in the tube. You have a nice voice. Thank you for sharing your story. Sending light your way. Olivia

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  2. Here from the link on the MS Society FB page - I REALLY enjoyed your article Wishing for a New Normal. I was diagnosed Nov 30, 2012, am a 34 y.o. wife and mom of four little ages 7 and under. I lost the vision in my left eye, my ears ring and one of them is muffled. I have gone limp on my right side four times, have constant numbness/tingling, and now I can't seem to regulate my body temp. It's SO frustrating because I LOOK normal, yet really, it's hour by hour as to how I feel during the day. So THANK YOU for such a great way of explaining how so many people feel about explaining their MS to others. I shared your article via FB in hopes that my friends and family get a better glimps into my life. Thank you, and keep up with the great attitude, I know it's hard, but it's better than deciding to be depressed over all of this.

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    1. Hi Lindsay, appreciate your message and hearing a little about your story. Sending healthy thoughts your way for 2013 and beyond. You are very kind, I'm flattered that my writing might be of assistance to you explaining this awful disease to others -- I hope you come back and visit more!

      Mike

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    2. P.S. Beautiful family!! :)

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  3. I found your link from fb....gotta love fb!!! I was diagnosed March 2012.....I was 35 and it hit me out of the park. Hade to do the 5 day stay in the hospital 3 days after the offical "yes you have MS"....not fun! I have a great husband of 16 years,2 great kids 11 and 7 and I have to say they have been such a huge support that it really makes me choose joy and to have a smile on my face. I look great,everyone tells me that just wish they knew how bad I feel inside. Love your blog...will be reading more of it. :) ~Kate ~~~Ballwin MO

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  4. Hi Kate! So true - the wife and kiddos are integral to my positive attitude - how can I not wake up with a smile each day, they are true blessings.

    And yes, love the "but you look so good" especially when I feel like death warmed over...but, I'm always happy to hear it. Better than the alternative - "wow, you look awful" ;)

    Hope you've been back to visit and will continue to! Mike

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