Adventures in brain tumors: My first not-good news

Today I got to see images from my most recent (and third) MRI brain scan and with it, the first not-great news to date. While my second MRI showed extraordinary promise with a near 50% reduction in tumor size, and over the past few months I've experienced a return in many of my hormone levels, the results today weren't great. My most recent scan showed negligible change in tumor size (we were hoping for continued reduction) but worse than that, the scan showed two different densities in the tumor, with most of the tumor looking to be quite dense. It could be caused by a variety of things, but the most likely result is the tumor will not likely be getting much smaller. We'll try higher doses of medication and keep repeating these brain scans every 6 months going forward. While the tumor didn't change in size, if it does start to grow again it will be time for surgery to remove as much as we can.

So far I've been lucky in getting good progress reports every month or so as we've done oodles of testing so today's results were the first time it really dawned on me that this is a serious ailment and not likely to go away anytime soon. I know this all started with a pretty big health scare for my friends and family, but to be honest over the past 8 months since it happened I felt like my friends were taking it harder than I was. Everywhere I went since it happened, people corner me to ask how I'm doing and I've often felt a little guilty as their concern for my health seemed to be greater than my own. I was making extraordinary progress this whole time and I guess I figured I was still relatively young and invincible and this minor problem could be easily licked, so today was the day it actually dawned on me that this is serious.

This may never go away completely. This may very well require drilling holes in my skull to try and fix with no guarantee it will be a permanent fix.

Lastly, I found out that even if we can hold everything steady, the medications I'm on have side effects from prolonged use. One shows increased mortality over long periods of use. Another can affect my heart valves over time and leave me with some pretty serious heart disease. I went to the doctor today hoping for not-bad news (I didn't want to hear about a larger tumor) but 12 hours later as I write this, I'm kind of surprised how my not-bad-but-not-good news is really the first time this whole thing started to feel real.

34 Comments

  • Mike Monteiro

    Ugh. I’m sorry.

  • Oh man, sorry to hear this news, Matt.

  • $%&^ it, I’m starting a religion so I can actually pray for you instead of just hoping with all my might.

  • Ah crap. Take care of yourself Matt, and don’t let it sink in too hard.

  • Thank you for keeping us updated, even when the news is not what we all want to hear. Please do not hesitate to let us know what we can do to help if anything.

  • When you win a fight, you get some punches. Keep fighting!

  • I’m so sorry. I wish we were close enough to bring you terrible casserole and cone over to do the dishes while you process. Thinking about you.

  • We love you, Matt. Keep up the good fight.

  • Thinking of you, Matt, sorry to hear this.

  • With you all the way, and hoping this small blip of not-good news is just a tiny aberration in the overall story of your healing.

  • So sorry, Matt.
    If there’s anything we can do for you or your family don’t hesitate to ask. We’re all eager to help you.

  • Sorry for the not good news. Thinking of you here in NC.

  • Man, I wish I didn’t live in the soy infested wasteland of the Midwest, but somewhere closer that I could be useful…
    Meh.
    Best wishes and all due deistic supplications on your behalf!
    (Samizdata from the blue)

  • My mom’s cancer and tumors (including brain tumors) have ups and downs with growth, and the doctors and my mom bob and weave like a boxer. Scans every 3 months, adjustments to medications, It’s stressful but it seems to be the way it goes with tumors. I’m not sure that’s comforting, and if it’s not, try to ignore it. :-)
    May you have better predictability and success fighting the extra stuff in your head.
    For what it’s worth, you’re in my prayers. Rock on, Matt.

  • Ouch. So sorry to hear this. Hope everything goes well, and this is just a tiny, temporary setback.

  • Sending you strength over the net, and wishing for the best. I’ll be thinking good thoughts for you!

  • You already know this, but I’ll repeat it for the benefit of others: When faced with a serious and life-threatening illness, the most important thing you can ever do is to not forget that you still have a life to live and enjoy. This is not only important for you but also for your family. You’re doing a great job of facing and managing your illness and it sounds like you also realize that you still have to go and live your life. Keep up the fight! Your friends and family are behind you 100%!

  • So sorry to hear it, Matt. I really admire how strong you’ve been throughout all this and hope that you get better news on your next visit. Thanks for keeping us up-to-date.

  • matt, i’m one of those “followers” from the distant and unknown lurk.iverse, but i have been in your story with you for some time now, and your last statement calls me to the comment box with this: the feeling you are having now is a good match for the “real” you have … i get that, but, if you think about it, the feelings you had just before today were a good match for that same “real,” too. i get that the drugs might take a hard turn against you in time, but there’s enough mystery in the unfolding story to make us all stay with it and you, to ride this puppy through the whole menu of feelings available.
    from this perspective, you pretty obviously continue to touch lives and make a REAL difference in the lived outcomes for a lot of us every day. … you win, dude. every day, you win.
    you are not alone.
    ***echoes of javi and cameron, too

  • Crap! What a sucky thing to be going through. Sorry to hear about this setback and the uncomfortable mental changes. No, wait, that’s not quite right; I am really glad you’re sharing the ups and downs with us, so the hearing is good. The news bites.
    Huge hugs to you and Kay. Thank you for being such a beacon of enjoying life. Looking forward to more of the insights you share as these challenges hone your focus on what’s really important.

  • Matt, I’m sorry that this is the news you were given. I was one of the legion hoping that your tumor would continue to shrink with the regimen you were on. You and the whole mathowie fam are on my mind and heart. Much love from Huntsville, Alabama.

  • I kind of know what you are going through here, so sorry to hear you kit a bump. I live in fear mine will come back. I also didn’t have to deal with it in the brain.
    Hopefully they will figure out something that works and you can get this to a place you are happy with and can live with.

  • Jonathan Rouse

    I haven’t the words, but I still couldn’t keep myself from chiming in to say that I am hoping & wishing & praying that you (and my fellow mefi’er Sara) look back on this five years hence as “that time I survived cancer.”
    Know that for every idiot like me that leaves a comment, dozens more echo the sentiment. If there’s anything to the New Agey “power of positive thinking” nonsense, your tumor will end up in Glen Beck’s head soon.

  • Matt-
    Just wanted to say thanks for sharing this and that you’re in my (and many peoples’) thoughts.
    ZM

  • Shit.
    You’re in excellent physical shape, have a great attitude and fortitude and support to do whatever it takes to survive this hurdle.
    You are in our thoughts and we are in your corner, hoping for the best for you and your family.

  • Sucks about the not-good news. We’re thinking about you, and shooting nasty glances at your tumor.

  • I’m sorry to hear this. My thoughts are with you.

  • What everybody else said, plus, If the positive thoughts, prayers and soul light being sent make any difference, you’ll be a superhero in no time. A lot of people care about you, many of us at a literal and figurative distance. Fuck Matt’s tumor!

  • fuck that tumor!!!

  • Ah damn.
    You are in my thoughts.

  • I’m with Lilly. I used to be Christian, but even now, it seems like I become Christian temporarily again every time someone I care about needs help. Praying for you, man.

  • Wow, Well I just stumbled across your site (and tell you the truth I have no idea from whence I came) and saw your post.
    My husband had cancer several years back. Doc sent him home telling him he had a month to live. One good second opinion, lots of treatments, and seven years later… he’s still here, alive and kicking. And we had a baby this past year – something else the docs told us wasn’t possible because of all of the treatments.
    Wishing you the best!

  • It seems to me that doctors would want to see you earlier than six months, like maybe three months. I am at a loss for words so all I can send to you is a strong vibe of healing and love.

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