Adventures in brain tumors: a frustrated start

Posted bymathowie 42 Comments on Adventures in brain tumors: a frustrated start

I wish I had a copy of the images to show you, because they're kind of
amazing. Imagine a cross-section shot of a head and what isn't brain,
is tumor. In the small gap at the base of the brain, there it is, and
it's huge. Tumor, all of it. So large you can't see my pituitary gland or other tissues in the region
at all. So large I hear it may have caused irreparable harm.

Of
course I'm twice as old as the last time I believed I was truly
invincible, but I'm not so old that I forgot what it felt like. Walking
to the Neurosurgery wing Friday morning, I noticed I'm younger than the
average patient age by 20 years and that just about broke my heart.

My imagined full, amazing, and
speedy recovery was sidelined Friday as I reviewed photos of my brain, took some
blood tests, and got some results. My hormones? Zeros, across the
board. Testosterone? Zeros across the board. Adrenaline production?
Zeros across the board. I'll get to wear a Medic-Alert bracelet for
that last one.

Of course, hormones are replaceable,
as there's a giant body of work stretching decades behind me and pretty
much everything can be synthesized, measured, and replaced. A
sudden fear is subjecting my loved ones that surround me to the rocky
weeks. This can't go perfectly, right? I don't want too much
testosterone Matt to snap at his daughter. I don't want not enough
hydrocortisone Matt to pass out and ruin a weekend. I never wanted to
be a guy that carries pills around wherever he goes, but here we are,
and it all seems too fast, too soon.

Overall the path is up the meds and hope to shrink the tumor a bit because it's actually too big to clean it up in one surgery. The meds have side effects so we're ramping up slowly and I've also just learned a path of total inaction will end with blindness eventually.

So we have to keep on it.

Published by mathowie

I build internet stuff.

42 replies on “Adventures in brain tumors: a frustrated start”

  1. You have the courage of a warrior. Stay strong, man. Thank you for sharing what you’re experiencing, and please continue. Sending you good vibes. Bless you, good sir.

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  3. It’s a choice to be a survivor, Matt. Good luck and know that there are plenty (some of us much younger) that know your experiences and feelings. It’s hard to remember how blessed you are normally, but even harder when times are rocky.

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  8. I understand what you mean about how disconcerting it is to be half the age of everyone else having the same treatment. My fiancée is currently undergoing treatment for breast cancer – average age: 58. She’s 31.
    But, as our doctor told us, there’s a positive side to this. Because she’s younger and stronger than (most!) 58-year-olds (i) They can use a more aggressive treatment regime (she’s getting drugs in doses that would knock an older person flat on their back) and (ii) Her recovery time between treatments is *much* faster than an older patient.
    So keep your chin up, mate: your age is a positive factor, not a negative one. Keep fighting.

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  9. Is there a reason you couldn’t get copies of your scans, or did it just not occur to you? I asked for mine. They mailed them to me. I had them in 2 days. It took me longer to find software for the mac that could view them. The disc came with a limited PC viewer, but no where near as cool as what the mac version I found did.
    Speaking from experience, anything in your head looks huge. I thought mine was big until I started looking at other people’s shots on the internet and realized I was pretty darn lucky.
    I hope things go well.

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  10. Matt, it’s Andy’s mom. We met at Eliot’s party. I wanted you to know that you and your family are in my thoughts and prayers. Just stay positive and draw strength from the many people who are cheering you on. You are young and strong and you will get through this.

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  11. For what it’s worth, if you have this much ambition without your testosterone, the ability to ride superhuman distances on your bike without your adrenaline, I’m frankly excited to see you running at full speed.
    Not to dismiss that very real sense of loss, I know that feeling of “I’m too young to have the trappings of age”, but the reality is your daughter and your wife (and all of your friends), are judging you by the sum total of all that you do. Even if you never had a tumor, even if you never had any health issues at all, you’re still gonna have bad weekends. And it’s okay. That’s not a shortcoming of yours, or something unique to this lump in your head. It’s just an obstacle of the sort you’ve overcome all your life.
    You’re good at the long haul. Nobody else has a good idea for a website and says, “I know, I’ll sign up for a decade of this.” Nobody else would slog at a community, with downtime and bickering and all kinds of burdens, for five years before starting to see a return. You know how to do the work, and this is another one of those situations where you’ll have to rely on your extraordinary abilities.
    And you’re gonna be great at it.

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  12. I found out I have a huge mass in my thyroid that requires removal of my thyroid, and like you, I keep thinking — I’m too young for this! This isn’t how it’s supposed to be. I’m awaiting surgery this week. I have the same fears: being the one that people have to think of (and I’m always the one that does the worrying before! it’s hard to take a back seat), being on medication for life, being dependent on my loved ones, etc. From one ‘patient’ to another: we’re going to beat it. Matt, positive, healthy thoughts and prayers go out to you. Take care.

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  17. Matt, as others noted, your age and exceptionally good health are on your side, even if there are some surgeries to come. It makes a big difference. I’m so sorry you got dealt this hand, but I’ve every confidence that you and your enormous support network will do well. The older I get, the more people I know who have serious issues to deal with – friends with cancer, chronic autoimmune disease, etc. Whenever it comes, it always seems to be too soon, but it doesn’t invalidate the idea that there’s a great life you’ve yet to live and it’s still coming your way. Hang in there. I’m wishing you well.

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  19. I’m your age and I had a brain tumor last year. (Not the same kind as you have.) I just want to give you some extra hope, it’s possible to survive these things. After the surgery (my tumor was the size of an egg) I was cured, and the tumor hasn’t come back. I feel like a very lucky person, my life has new dimensions today.
    I’m an active blogger, like you, and a week after brain surgery I started a new blog about my rehabilitation. I went back to my full time job a few months after the surgery.
    I wish you all the best! You will beat this, because you have to. Hugs.

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  20. Matt, I lost my father to a brain tumor in 1986. The technology then compared to now is like the dark ages compared to gigabit ethernet…
    I hope you know that you are an inspiration. Even before this set of hurdles. Your honesty and candor mean your reach and influence will only grow. That you’ve done so much while having a tumor means that you have the strength, drive and determination to tackle amazing things in the future.

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  22. I know how you feel about being too young– the average age in the retinal specialist’s office is “well north of 65,” not “somewhere between 28 and 33”- but, like everyone else says, your youth is your secret advantage. You’re quicker on the uptake, more likely to comply with your treatments, able to employ current technology to keep yourself informed, and vocal enough to advocate for yourself.
    Also, I can’t recommend it enough– if people in the waiting room want to talk, do it. It makes a huge difference in your outlook when you get a chance to talk to other people in your boat, and maybe make them feel a little better about their own situations.

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  23. Hi –
    My mom had a tumor like this one – they found it more than 20 years ago, and she had surgery for it a few years back because it had grown to the size where it began invading her sinus cavities and rubbed a hole in the covering of her brain. She was leaking CSF – that’s what finally clued everyone in that the tumor had been growing (she admittedly wasn’t keeping on top of the thing… not such a good practice).
    Anyway, she ended up having surgery twice – the first time she bled too much and they had to stop before getting as much of the tumor as they wanted to get. The second surgery was a success; they removed as much of the tumor as they could (they can’t remove it all, as you know – they would remove your pituitary if they did), and they were able to put in a fat graft over the hole in the covering on her brain. Recovery was slow but not awful. She had the surgery in mid-July and was teaching full time mid-August.
    She’s definitely had some struggles with the drugs she takes to keep her hormones in check and to keep the thing from growing again. It’s going to be a lifelong process to keep the drugs in the right balance.
    I don’t know why I’m telling you this – I hope you find it helpful. I know your situation isn’t exactly the same as my mom’s, but you’re not alone. It’s scary as hell to think about a brain tumor, but (unless I missed something), these tumors aren’t malignant and with management, they can be discouraged from regrowing.
    I remember when my mom first told me about the tumor – her doctor told her that “we usually see these at autopsy.” Of course, that completely freaked all of us out – it certainly sounded like he meant the tumor was deadly, but he really meant that there are plenty of folks wandering around with these tumors that never amount to anything while the person in alive. You’re just one of the “lucky” ones to be impacted… (that’s supposed to be funny…)
    I wish you a very speedy recovery and good luck with your continued treatment and management of your tumor.

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  24. Matt, it’s good for all of us to hear you talk about your experiences. Thank you for that.
    Like others here, my mother had a brain tumor at 39, different than yours. As I look back on all of our experiences from that I learned to take this one day at a time.
    Thinking good thoughts about your next bike ride.

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  25. Matt, you’ve been an inspiration to me for almost a decade. I still make it a point to read your “Just Add Water” article about once a year. I look forward to you continuing to inspire me for decades to come.
    You rock. And you’re a badass.

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  28. Matt, I am thinking of you and your family. Stay strong, and take just one day at a time.
    Lottsa hugs,
    Gerry

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  29. matt – try to get your images on CD. you can make amazing 3d reconstructions with a program called Osirix (macosx only…)
    something to look forward to when you’re past this whole mess.

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  35. My imagined full, amazing, and speedy recovery was sidelined Friday as I reviewed photos of my brain, took some blood tests, and got some results.
    My brother recently had the 52nd ever reported case of a type of cancer in his jaw. Half of his top jaw is now hip bone, and his cheekbone up to and including and eye socket is now one of those fancy new titanium models. His eye is cradled by a piece of titanium mesh rather than bone. Weird, huh?
    Anyway, they said he’d have bad scaring across his face. They said his speech would be slurred forevermore. They said he’d permanently lose feeling on his lip. They said a whole bunch of stuff, and they were wrong about all of the above.
    A few months after the op and you can only see the scaring if you know where to look. His speech is 100% normal. Feeling is coming back to his lip where there was supposed to be done. And he’s just been allowed back to his full time job of being a paramedic, meaning his been deemed mentally and physically fit and able to carry people up and down stairs, or crawl through wrecked cars, or deliver babies, or administer drugs, etc.
    Not saying the past few months have been ‘fun’ for him, but the point is things can go better than the doctors might anticipate.
    Keep up the good fight.

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  36. Too much testosterone Matt may snap, but amazing everyday Matt will patiently explain why. Not enough hydrocortisone Matt may pass out, but when he comes back everyone will just be happy to see him.
    Your everyday beautiful life has created a way for you to handle all of this. You have an amazing family foundation, passionate friends, time to learn and advocate for yourself, and people all over the world who want to help. In days to come, don’t waste time feeling burdensome — it makes you weaker — just take the help you need. It’s a renewable resource.
    Love to you from Hiram and me both.

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  37. It sounds like you are feeling what I felt when I got a cancer diagnosis: there’s a line in the sand you have to cross that is the distinction between the you you are now, the one everyone knows, the one you understand yourself to be, and the you you will be in future, which is a very cloudy and scary unknown, and very very different. It’s the BC/AD of your life, and not in a good way. The break between everything you’ve known and some other, sickly, struggling, being-a-burden life filled with medical knowledge you never expected to have.
    Do you think, “I’m always going to have to explain this to people,” or, “I’m going to be the one with X” or variations?
    As I understand it, anything serious like this, life events and medical diagnoses that makes us rethink who we fundamentally are (emotionally, phyically, and so on) come along with this “standing on the edge of the precipice” feeling. It’s terrifying, and I personally didn’t have the language to express it. In retrospect I see it all over the place, though.
    As much as it feels like you will not be you (as you know you) after whatever point feels like the line in the sand, it’s not really quite as clear cut as that probably feels. I wouldn’t have believed that if anyone told me so at the time that I felt it, though. I was really terrified of crossing over that line in the sand and living the life of that cancer patient, always being sickly, having to take drugs forever, etc.
    Replacing real hormones with fake hormones is weird; since we’re just a series of chemicals, you’d think some essential youness would be lost.
    Anyway, I just came here to say: if you feel that sense of the youness precipice and it’s upsetting you, I hope it’s comforting to know that that feeling seems to be a mark of any major passage in life when it comes to things medical. It always feels a lot more dramatic at the beginning, a complete break from what came before. But it’s never quite that simple.
    You’ll still be you as you know you; from the sounds of it, with treatment, you’ll just be more you.

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  38. I’m so sorry, Matt. This is awful news, and all of your friends are a little broken hearted right along with you.
    Try your best not to worry for the people around you, let them worry for you. With all your levels at zero, you already haven’t been yourself, and now any behavior irregularities will at least be moving you toward health.

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  40. Hi Matt, one of your friends you didn’t know you had . . . wishing you the best recovery. I also had that same “WTF — I’m too young to be here” moment, in the skin cancer ward with melanoma. Freaky feeling. But I am okay now, and it sounds like you will be, too, as you are in good hands. Strangers are thinking of you! Your first hospital pic below just about broke my heart.

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  41. Matt,Thanks for sharing and keep us posted: You are strong willed and destined to beat this thing.Take care. A new friend you never knew about from Me-Fi

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  42. Matt, I worried about the “too much” testosterone thing too. Don’t. They’d have to give you way too much for a long time to do anything weird to your personality.
    You can request copies of your MRI and CT scans on CD-ROM. I did. You can make fun 3D movies of your brain and skull. Take the fun where you can find it because there won’t be much.
    Get used to “false summits” too. You think “Okay, I take these meds and in 3 months I’ll be fine.” Then after 3 months there’s a new wrinkle. Your doctors have probably told you it’s going to be a long haul; it will be. Like you, I thought because I was young and super healthy I would be the exception and I wasn’t.
    Keep being positive though. When you’re walking around the hospital, it’s easy to find people way worse off than you. You can be thankful you’re not worse, be thankful you have doctors that know what’s wrong, be thankful you have family and friends supporting you.
    Hang in there! You WILL get better.

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