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I have a brain tumor – now what?

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Several folks have asked for an update on my health. Some of this will be repetitive to some of you, but I wanted to document the whole story anyway.

Last Saturday evening, Matthew was in New York on a high school band trip. Julie and Cassady had just left the day before on a confirmation trip and were in Atlanta on their way to St. Simons Island. I was working at home with a friend (Ben Reed) on two iMovie projects (1, 2) when all of a sudden my right leg started to feel some strange combination of numb and clumsy. I knew pretty much right away that this wasn’t a case of my foot being asleep so I had my friend take me to a local trauma center. At the trauma center, they gave me a CAT scan and an Xray. The CAT scan showed something that might have either been a stroke or a tumor so I was transferred in an ambulance (full speed, lights and sirens on) to Riverside Hospital about 10 miles away.

 
They took me into an exam room there and I quickly saw my right leg starting to convulse. Within 30 seconds, I was having a full-on seizure that apparently lasted for 4 minutes. I only remember a bit of it but it was terrible – the most frightening thing you can imagine. While I was under, they apparently did another CAT scan and confirmed that it didn’t appear to be bleeding (i.e. what you could see wasn’t growing) and thus not a stroke.
 
I awoke awhile later in a room in the brain and stroke center of the hospital. After awhile, they wheeled me down for a MRI which has much higher image fidelity, though you have to lay very still in it and it’s extremely confined. That lasted an hour and I was really glad when it was over. Not moving for an hour is hard.Image
 
What the neuro-surgeon told me was that he’s 99% sure that what we see on the MRI is a low-grade tumor on the parietal lobe of the left side of my brain (you are looking up through my chin in that photo). Some of you know that my mom died of a much more aggressive brain tumor about 11 years ago. This appears to be more like a stage 1 or probably stage 2 glioma than a stage 4 (the latter of which has a life expectancy of 6-11 months). The neuro-surgeon said that people with a stage 1 can live 20-30 years still – some with little or no treatment. My own reading and research (pro tip – googling around for glioma is a depressing undertaking) indicates that he was probably being hopeful and optimistic at a time when I needed it, but who knows. There are a few good things in the MRI report including the fact that they described the tumor as “sharply circumscribed” (i.e. it has well defined edges) and its only 2.6cm in the largest dimension. Julie said she saw online that 6cm is a point where the concern level goes up dramatically. Also, the fact that the tumor hasn’t crossed the midline of the brain is good.
 
In the hospital, the neuro-surgeon said the big picture is that we have three options:
 
1. Do nothing and watch it
2. Have a biopsy done to confirm what it is and decide on next steps at that time
3. Go in for a full removal of the tumor
 
Given that even a biopsy in this case involves drilling a hole in my skull, it seems pointless to do that and not just remove the tumor – especially with the risk that the biopsy needle could transport bad cells into a new region. But we’re still doing research. We are meeting with the neuro-surgeon again on April 7 and have a whole host of questions, including what are pessimistic, realistic, and optimistic outlooks for people like me, how long does he think I’ll be out of work, how does he know what to remove, and when would we do this etc. Cassady’s confirmation is Sunday April 27, so I’m hoping that the procedure itself can be delayed until after that. But we’ll let the doctor be our guide.
 
Right now, I feel mostly normal. My right leg, which was still clumsy in the days after my hospital stay, is occasionally awkward. But physically, I don’t feel much different than I did a week ago prior to running nine miles on Saturday morning (I had been training for the Cap City Half Marathon as part of a Run For God program at our church).
 
In the next couple of weeks, we’ll be reaching out for help in a couple areas. In particular, because I’m not able to drive, getting to/from work is going to be a challenge.
 
I have already been the subject of more love and affection than anyone deserves. I’m very thankful to my buddy Ben who took me to the hospital and stayed long into the night, my sister-in-law Jill who works at the nearby James Cancer Hospital and spent the night and morning with me, my beautiful bride Julie who hopped off the confirmation trip and flew home to be with me, and my sister who flew in from California to spend the week with us.
Image
And of course the folks at work, the folks at church, the people in Scouts, and several friends on twitter and facebook have all been so very loving and supportive. Please know that I treasure and value you all very much. You all mean the world to me. When I went up to bed last night, I found post-it notes all over our room from our daughter. It was really emblematic of what all of you have been doing for me and us. Know that it is appreciated. Right now, I have to admit that I feel fortunate. Having a brain tumor is not something I’d wish on anyone, but the entire experience has helped me gain a mountain of perspective and realize just how much each of us is loved. My one piece of advice to each of you is to try and appreciate that today. I’m now seeing demonstrations of it well beyond what I deserve. The love I’m feeling – from friends, from family, from God – is overwhelming. And it’s available to us all. Thank you all for everything you do.

Written by mdoel

March 28, 2014 at 1:56 pm

Posted in Uncategorized

7 Responses

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  1. Praying for ya! Your faith will see ya through.

    Doug Davies

    March 28, 2014 at 2:04 pm

  2. Thanks for the update Mike. It’s hard to express how I feel about this, but please know that I have so much respect for you. Anything I can do to help, I will do gladly.
    Much Love

    John A

    March 28, 2014 at 2:08 pm

  3. Your are in my prayers!

    Paul N.

    March 28, 2014 at 6:44 pm

  4. Saying prayers and sending love!

    Vicki Shepherd

    March 29, 2014 at 1:01 pm

  5. You are loved! It is an honor to include you in my “R4G prayer runs” – inspires me to kick it up a notch and really live 🙂

    Mary Schmidt

    March 30, 2014 at 12:11 pm

  6. Mike, I had no idea. I’m so sorry to have burdened you with my issues when I saw you set Bob Evans. You will be in my prayers and if there is anything I can do for you or julie or the kids please feel free to call upon me. Love, hugs, and prayers. Lynn yoho

    Lynn yoho

    May 7, 2014 at 2:33 am

  7. Hi Mike, a FB friend just contacted me with a link to your blog. I just started my own tracing my own brain tumor battle in 2012. http://www.missingmonthofmay.com . It’s two years later and I am still here, blogging about it. Good luck to you and you are in my prayers.

    Katie

    May 7, 2014 at 4:19 pm


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