Adventures in brain tumors: part one of many

 Photo on 2009-11-13 at 14.13

You know it's going be bad news when the ER doc slides a chair over to sit on. Good news is quick, a simple "You're gonna be fine! You can go home!" Seeing that chair slide over with her let me know I was in for some long explanations of bad news.

Of course the worst part is that I went to the hospital with a bad flu and two hours later this ER doctor is explaining that during the routine CT scan on my head, a lump was found. She couldn't tell if it was blood, a mass, or a collection of both. She couldn't tell if it was benign or cancerous either. I was immediately rushed to the area major hospital OSHU for MRI scans that could provide higher resolution data.

I finally got to experience the horribleness that a 45min long MRI I've been hearing so much about. That really is a ghastly creation, sliding me into a jet engine whirring to life for 45 minutes with about one inch of clearance above my face and an entire field of white to stare at until it's over? Figure out a way to project a few Simpsons episodes or at least some music to overcome the loud, claustrophobic noise machine that is a MRI.

I forgot to mention that before I got my MRI, I was waiting in their area and a technician asked me to move from my flat hospital bed that I was sleeping on to a waiting wheelchair before I got transferred to the MRI sliding test bed. I remember saying "Ok, I guess…" and as soon as my ass hit the wheelchair seat I said "I'm going to pass out" to the tech. I blinked my eyes and when I opened them six people were above me on a bed with an alarm sound in the distance. The head person in charge asked me if I do recreational drugs "It's cool here man, no judgments, it just helps us help you" and I said no, I've never done any recreation drugs (which is true). When I said I'd just taken a few doses of Codeine cough syrup the night before he rattled off a bunch of what I guess are street names for codeine based highs that were each more hilarious sounding than the next. I was exhausted and just coming back into consciousness so forgive me for not remembering the real names but it sounded something like this:

"Oh you took Codeine huh? You doing Night Rammers? Doing Robot Jammers? Doing some Springboard slammers?"

I had to confess that without a copy of UrbanDictionary.com, I wouldn't even know what he just asked me but that no, I didn't take any more than the recommended doctor's dose.

I'm getting ahead of myself, let me go back to the beginning for the sake of friends wondering what was up with my initial tweet (this is long and exhausting and I don't mind if it's tl;dr for you).

I started feeling a sore throat last Saturday night, which progressively got worse until Tuesday/Wednesday when I slept about 16hrs straight and still felt awful. I went to my local ER because our normal doctor group was slammed with patients (2 local people have died of H1N1 so far). They said my chest was clear so probably no swine flu and didn't bother to swab my nose, then sent me home with Codeine cough syrup which I hadn't had in probably 30 years.

When I got back home, I took some of the cough syrup and went back to sleep. At this point I lost track not only time but also the concept of time. I moved about in a fog, occasionally getting up to drink water and/or pee, and when I thought four hours had passed, I'd take more cough medicine. This continued until I remember passing out on the way back from the bathroom to my bed. I remember feeling like my limbs weighed 500lbs and I couldn't get up as badly as I tried and wanted to. I kept attempting, and struggling until I heard a slam and crack loud enough to wake me up enough to realize I had just smashed my arms, shoulder, and head against the bathroom sink counter/cabinets. I sort of stopped trying to get up so badly and the next time I tried to get up again my wife was over me, talking into the phone with 911 emergency describing me and she kept saying "seizure" and then bright lights came on, I rolled to my side and I was talking to paramedics.

The paramedics thought I was just exhausted, dehydrated, and a bit out of sorts on Codeine. I followed my wife's lead and agreed for them to ambulance me to the local hospital. The local ER doc literally threatened to give me a spinal tap if I agreed I had a seizure versus a simple passing out, so I said I just passed out. The doc eventually caved to a CT scan just in case I injured my head during my fall. That's when I got the sit-down about the mass. It was just beginning to hit me: brain tumor. Brain surgery. Holy Fucking Shit. What? I just turned 37 last month, I live a completely clean nerd lifestyle, and this is the thanks I get?

Oregon Health Sciences University Hospital (OHSU)

Fast forward to OHSU medical center and there were lots of tests, lots of blood samples, and many bags of IV fluids. I've never been to a hospital as a patient in my life and wondered if I'd be freaked out by the whole thing so it's a stroke of luck that my first visit was during a period of such exhaustion that I got through everything while fully relaxed (My history of blood samples includes lots of fainting, swearing, and shouts of pain, followed by embarrassed walks out of the doctor office).

My room at OHSU was nice and I got it all to myself (nerd note: they have a fantastic free open wifi network that operates somewhere in the 30-40Mbps range). A few sleep cycles interrupted by nurses taking my temp, blood pressure, and pulse and suddenly a room full of men shrourded in temporary facemasks and scrubs wakes to ask if surgery in the morning is ok. I mutter "I guess…?" because I can no longer tell what time it is or what is coming next and surgery would be just one more thing happening to me. I mention that I feel too sick to handle recovery right now and that we might want to postpone it, they say pshaw, we'll go full steam ahead.

At some point I'm told the whole story. I have a walnut-sized tumor sitting on my pituitary gland, at the base of my brain, separating my optic nerves. Usually people notice changes in vision immediately but I have one bad eye from birth I don't really look out of so I didn't notice right away (I did notice it's harder to "switch" over to it in the last year or two). They have to operate and remove it, or in some cases if it's a tumor of a certain type it can be shrunk down and even managed completely with some hormone meds. My hormone levels across the board are very low, solving multiple issues I've had for the last couple years and wondered about constantly. They wouldn't know until later if my tumor was treatable with meds, but I should anticipate surgery in almost any case.

Twitter

About this time, my good friend Anil Dash takes my story to twitter to ask people to spread the love for me and when I take a first look at the hundreds of comments, I'm overwhelmed with tears and actually starting to dread surgery for the first time, on the off chance I die in the operating room. It's oddly amazing to see the outpouring on twitter, and in a weird way I feel like I got to attend my own funeral and hear all the nice things people said about me after there was a chance I could be gone. It was all quite a surprise and I felt awed and loved and supported by everyone's good thoughts and kindness towards me. As I shut my laptop I feel like I just crowd-surfed the entire internet as they held me high above and as cliched as that sounds it was a very good feeling to sleep to. As people say at funerals, don't forget to tell the people you love the things you'd say at their funeral, when they are still alive.

The Surgery Train

Late Thursday night I got a double dose of cortisone steroids to "strenghen up" for the next day's home run derby surgery. I'm warned of two side effects: fitful sleep and nausea. An hour later when a nurse checks my vitals, I figure out what nausea means and cough up the dinner I ate. Later when I finally get to sleep it's immediately a nightmare where I'm being chased or yelling at a longtime friend and it feels like it lasts for hours, then jerking myself awake in a cold panic and realizing I've been asleep for seven minutes. Going back to sleep repeats the cycle. This continues for 6 to 8 hours, as I awaken hundreds of times in the night. Normally I would be nervous the night before surgery and sleep poorly but I was completely at peace with it and ready to go (because I knew I'd be knocked out away — hey more time jumps!) but it was the longest night of my life. As the steroid wears off in the early morning hours, I hit full sleep and I'm awaken by a series of doctors and nurses preparing me for various stages of surgery, all while I'm half asleep. There's the two-vial blood draws. The double-time IV drip. Then the surgeons are back in their obscured garb.

The surgeons in the room number in the half dozen (it's a teaching hospital and that's to be expected but in a half asleep haze and their medical shrouds I feel like I'm getting constantly awoken by Jets or Sharks cast members ready for a rumble). The surgeon says in neutral tones that we have two options. Option one is to go ahead with surgery as planned and they swear I'll be alright after, get released home on Sunday. Option two is my bloodwork showed I had high levels of prolactin, which indicates a tumor that responds well to medication and possibly shrinkage, even eliminating the need for surgery completely in some cases. The choice was mine. I said since I was still so exhausted and feeling horrible with flu that I'd rather wait, and with that, the surgery train stopped and I could eat and drink water again and a parade of pills started coming to me.

Kay showed up soon after and we started seeing a bunch of different doctors saying somewhat different things until we finally got a great doctor with a sense of empathy that sat down and really explained everything to us in detail and answered any questions we had and also mentioned I should go home that very day and treat it with hormones in the future. This came as a surprise and eventually the other doctor teams (I could never tell who was in charge) agreed and I went home to sleep it off with a fist full of hormone meds.

Upsides

Three rays of light in all this, thanks mostly to my longtime friend Dr. Jason Levine:

  1. The neurosurgeon that would have done my surgery was one of the best in the country and specializes in base of the brain operations like mine would be. It's actually a simple up through the nose, drill a tiny bit of bone and clean out the tumor, which is easy with a nose like mine.
  2. Jason on my chances of meds vs. surgery "The good news is that it looks like something like 90% of
    prolactin-secreting tumors respond to cabergoline or bromocriptine, and
    that the bigger the tumors, the more they are likely to respond in
    terms of shrinkage.  In addition, around 70% of the tumors responded
    enough that the patient was taken off of the drug, and then they
    remained with normal prolactin levels for life, without surgery or any
    other intervention."
  3. Unbeknownst to me, a close friend has been living with a similar thing for years, treating it with medication.

Thinking this through, I've had low-hormone symptoms for a couple years. Despite a couple years of hard training on a bike for races, I continued to finish in the back of the lowest classes at race events. I've been going to a gym for a year and pushed more weight every week but gained almost no muscle mass. Losing weight this past summer was an enormous task to counteract the 30-40lbs of unexplainable weight gained over the past several years. My libido all but disappeared. I not only took frequent naps, they weren't the sign of my laziness but began to feel absolutely necessary to function each day, and this was with nightly sleep of 7hrs or more.

All symptoms pointed to depression, but I didn't feel that bad about things. I actually quite enjoy my life and everyone in it these days but it boggled both my mind and my wife's mind for the past several years. Figuring out there was another explanation is like a huge weight lifted off our shoulders.

Conclusion

The last few days were my first adventures in losing the concept of time. Not being a recreational drug user or heavy drinker, I've got no experience with blackouts or loss of time perception and this past week was my crash course in both. The days in the hospital didn't go by so much as a blur as they did a smear. I was either asleep, passed out and seizing, lethargic, and very briefly completely awake each day as an army of medical professionals grilled me with a couple dozen identical questions and eventually life altering decisions were presented to me when I had been awake for all of 30 seconds. 

I came away from this experience feeling the OHSU hospital in Portland continues to impress me with its amazing staff, but that the process of dealing with patients could be done in a more efficient manner. I know they all sort of kept an internal log of my story but to constantly be asked the same things by different groups of people and then not know who is your main decision maker was a challenge. Given my state of sickness and exhaustion, I felt like what an elderly man might feel like in the medical system. I had trouble understanding what people were saying as they woke me from sleep, I was constantly poked and prodded without descriptions of what results entailed, I literally wanted to "phone a friend" when those surgeons asked me in the early morning hours what I wanted to do.

Overall, I'm in a much better place and just trying to rid myself of a really bad flu, cough, and cold as I take fist fulls of hormone meds and await a barrage of additional office visits and the many required blood workups to see if this is all working.

I'm actually quite optimistic at this point. Oh, and I'm home and not in the hospital like these photos suggest.

 Photo on 2009-11-13 at 15.56

187 Comments

  • Best of luck to you Matt… Oh, and nice pattern on the hospital gown… :-)

  • Matt, the medical geek side of me is fascinated by your story (and amused by its excellent telling); the Mefite in me just wants to tell you we all love you to the millionth power. Thanks for the update — I know a bit about this kind of tumor and its associated treatment (knew someone else who had a very similar case — he’s right as rain now), and it sounds like you have every good reason to be relieved and optimistic.
    Take good care, keep getting well, know that you are loved.

  • Thanks so much for filling us in, Matt. Great to see that you might not need surgery at all and that you’re home now.

  • sending you all the hugs and hope in the world… from half a world away.
    if i were in your hemisphere… i’d do the chicken soup thing, or something.
    in lieu of that… have a cyber hug possum.
    taff

  • The outpouring of #mathowielove reminded me so strongly of the final scene of It’s A Wonderful Life. It’s an amazing thing to witness, striking evidence in how you’ve affected so many others in a positive way.
    Get well soon, George Bailey.

  • Hang in there, fella. The update is much appreciated and, of course, you know if you or Kay or Fiona need anything at all that I’m capable of providing, you have but to ask. Much love to you and yours. Whatever’s going on in your noggin, I feel certain you’ll come out on top of it.

  • Matt, here’s hoping the non-surgical treatment has great results (and it’s good to know there’s a back-up surgical option just in case). Literally thousands of people are sending you their best, happiest healing thoughts.

  • Feel better soon, good sir.

  • oh… and i hate anecdata… but one of my really good friends has had a prolactin secreting benign brain tumour for 15 years. she takes bromocriptine and leads a normal life. although her neurologist has banned her from mobile phones.
    which is not supported by research, as far as i know… but he’s an older doctor and a bit of a worrier. apart from that she’s completely normal.
    it affects her vision a bit when she’s very tired or if she forgets her meds but that’s the sum total of it all. and i hope it’s a similar story for you.
    if your situation is anything like my friend’s, then i won’t fret about you anything like i was going to.
    take care.

  • Thanks for the detailed description, it’s much appreciated. I don’t usually get too bent out of shape about people I’ve never met, but I’ve been thinking about you a lot over the past couple of days and the wife and I are still wishing you and your family the best.
    Hoping that this’ll be an ordeal that’ll lead to some great writing and nothing awful.

  • So glad to hear you’re home and the news is on the better side. Your account of all this is remarkably lucid for how stressful and crazy it must be/have been.

  • Good to read the backstory. OHSU is a good place, I agree. I was up there yesterday, too. My deal was less epic…just looking at surgery to help me hear better. Maybe we can share a ride next time. ;-)
    Glad that so many nagging questions were answered; I’m optimistic too.

  • It’s great to hear that things are looking more positive by the day. As you know, you’ve got most of the internet pulling for you — and we appreciate you being so candid here to fill us in on all the details.
    Glad you lucked out on the hospital too. Top-notch care and a T3 is just about all anyone could ask for.

  • So relieved to hear this update, Matt! What a crappy week, but it’s great that you’re back home.
    Much love & hugs to you & Kay!
    Dinah

  • I’m glad you’re home and feeling okay. Thanks for sharing what happened to you. I think that you hit the nail on the head when you compared your experience to what an elderly man might experience in the medical system. I’ve seen that sort of thing with other patients when my father was in the hospital and I worry for people who don’t have someone around to help them make these decisions.
    Anyway, here’s hoping the hormone treatments will work and you won’t have to have surgery. Maybe all that #mathowielove helped a little!

  • Well I hope this helps solve some questions for you healthwise and that your recovery is speedy.
    You did indeed crowd-surf the internet. In a hospital gown!
    I think middleclasstool has pictures – you’ll need to negotiate with him in regards to their release.

  • Good luck, man. You’re a hero.

  • Good news. Well, the best news possible in the circumstances, I guess.

  • I’m so, so glad you’re feeling a bit better, and can’t wait ’til you’re back on your feet. Once you get a clean bill of health, we can start the #mathowiemockery meme. :)

  • I’ve always thought one of the worst things about hospitals is they wake people constantly, preventing patients from getting much needed rest.
    So glad you are home and I hope your tumor responds well to the non-surgical treatment. Get well soon Matt.

  • under the circumstances, the news couldn’t be better. not only do you solve all your problems, you DO get to go on and become the hulk!
    you really will be bicicycling when you get back to it.
    yay hormone therapy!
    take care
    de (RN/australia)

  • Matt, glad to hear that the worst is behind you. Best of luck on the road ahead.

  • Yo matt I’m glad all is well.
    Thank you for creating a website that has become an integral part of my life.
    You’re an inspiration!!

  • I’m so glad you’re able to post this. The crowd surfing comment is awesome. Big hugs and get well soon!

  • Good to see you’re back home. Here’s hoping the drugs do work!

  • amazing story, I just would like to send you some positive vibes and support from Geneva , Switzerland. Your nerd note ( they have a fantastic free open wifi network that operates somewhere in the 30-40Mbps range ) made me laugh so much, it’s nice that you are able to make such comment because indeed in these moments our best friends may be a good wifi connectionn to be able to communicate with the outside world.

  • You win worst week of anyone I know. And best hospital camgirl photo.
    Very glad that you are doing well enough to write all of this, particularly taking the time to note the hospital wi-fi.
    Get all better!

  • You made Mike cry. You are my hero.

  • Seriously though! I was downloading movies to watch at 3Mb/sec. Any comedy you want in about two minutes on a network shared by thousands — it was a feat worthy of mention.

  • San Francisco has been worried about you, mister. Thank you so much for the update, now go recoup so we can start mocking you again without guilt.

  • Get better, Matt.
    Anil’s Twitter thing confused me, but along with me there are upwards of a thousand people who’ve posted their best wishes in the Metatalk thread too. Some serious positive vibes winging your way through the aether.

  • A quick note to beam a few more positive vibes from this corner of London, and to say chapeau for sharing this with so much openness, honesty and positivity. Get well soon Matt.

  • My brother has that same condition, and the mess are rocking his world. It’s been a few years, and he’s doing quite well as the tumor has been shrinking. I hope you do at least as well.

  • Just wanted to let you know I’m rootin’ for you :)

  • All the best wishes, Matt!

  • Cheers, prayers, and best of wishes from Glasgow. Life and love are so rich and so fleeting — glad you’re around for more.

  • Wow, great story, so glad to hear and so glad to see you’re able to tell it so well.
    Somewhere between the jealousy over the hospital wifi, the laughter over the codeine drinks [is that the Purple Drank I heard about on NPR this week?], and the tears of the crowdsurfing, I had the idea that these doctors should have an advance team. Maybe someone moving a room or two ahead of them on their rounds could tee up their visit and questions, not with any medical details necessarily, but just to moderate the “who are you people?” effect.
    Of course, that might be just one more inexplicable interruption, too. Maybe doctors could just lay a bit of groundwork themselves.
    Welcome back to the stream of time

  • Get well soon, Matt. This is a fantastic story that some day will help others in your exact same situation. That is the power of the Internet. Thanks for sharing.
    Kay and Fiona are very lucky to have such a great husband and father.

  • Best wishes from Scotland.

  • Yay and awesome hospital story. Now we just have to get pb and cortex some tumors too. Unlike many people I’m sort of in love with he MRI machine.
    We were worried, thanks for the update.

  • It’s great that you seem to have gotten such a manageable prognosis. I’m so glad that a positive offshoot of this was to tie a few loose ends together and provide you some answers. I hope things continue to get better. Get over that nasty flu! Do you have an idea where you picked that up from?

  • Thanks for the update Matt. So glad to hear things are looking up.
    And how cool is it to have a friend like Jason Levine in a situation like this? He’s a longtime blogger/computer/web guy and a pediatric oncologist! First he hosts your webserver in his closet and then several years later he can give you very helpful input on dealing with brain cancer. I love the Internet.

  • Glad to hear you’re on the way home and on the mend. And that you have more than one option when it comes to treating this thing …
    Get better!

  • This is like an episode of House. Best of luck to you, I’ll be watching for updates. :)

  • hey man – hang in there. my sister was diagnosed with a brain tumor in april and it was super scary. but she’s getting through it, and you will, too. she’s a huge inspiration and you can read about her at her blog – http://www.girlbert.com

  • Wow.
    All my best to you and thanks for opening yourself up (so to speak) to all your readers/friends/fans/etc.

  • That’s a good feeling. I hope this kid makes it.

  • Another strong American Prayers work! I’ll give my all
    Your dignity in a hospital gown is inspiring. Thanks GBA

  • Good luck Matt, I’m glad to hear that the medical outlook is promising. Now just focus on dropping the banhammer on that flu and tumor. Feel better!

  • I came to this through Dooce’s tweet… and wanted to wish you well.
    You very fortunate, in some ways, to have received the medical attention you did — many people suffer with vague hormonal problems for years without getting a diagnosis… so that is so excellent for you. Well done to your Doctors!
    I too have a pituitary tumour and am going through the diagnostic process. Mine isn’t a prolactinoma though so surgery is in my future.
    There are some great support resources for Cushing’s Disease sufferers, given that its all so new if you ever need to talk to others about it, feel free to hit me up :)
    xx

  • Glad to hear you are feeling better. Good luck shrinking that thing down. On the bright side, think how bad ass you’ll be when you can bike at full strength.

  • My grandmother had the surgery in her late 70’s and after the recovery (intense headache and severely bruised face) she resumed a normal life with absolutely no more problems! They also removed hers via the nasal area. Good luck!

  • I’m glad they figured out what was wrong with you and now you can start treating it. Best of luck and thanks for the updates. Be well!

  • Huge PHEW. Glad to hear things are on the mend. Mega vibes continue to be sent. Feel better soon.

  • Good news, and a well-written, informative update. The usual thanks and a heartfelt “keep getting better.” Also, you can expect this post to be found and read into the future by patients searching the web for “lump in brain,” “brain tumor,” and “hormone therapy tumor.” It will help them feel better; for that, and presuming to speak for them, I thank you.

  • Oh, a prolactinoma! I guess it’s one of those “if you’re going to have a tumor at all it might as well be this one” situations. Feel better soon.

  • So glad to hear this more positive news about your ordeal, Matt! And amazed at your ability to produce a not-only-coherent but actually enlightening (as well as entertaining) piece of writing in its still-recent wake.

  • Best wishes, Matt. We’re pulling for you.

  • I’m a stranger who got here via a KMartino tweet. Good luck with your recovery. I’ll be thinking of you and hoping for the very best.

  • Thanks for sharing so much of the story, Matt. I’ve been thinking and worrying a lot about you, very glad that a relatively simple course of medication is the best course of action! Looking forward to seeing you soon.

  • Glad you’re out of the hospital and I’m sure you’ll be back on the bike soon. Also, 45 minute MRI? bitch please. I threw up DURING my 2 hour MRI (okay, they took me out at that point). I didn’t have a brain tumor though, so you win this round.

  • You don’t know who I am but I have lived a similar life when my mom’s neurological condition went undiagnosed for four years.
    I wish you strength.
    I send hope and courage to your family because although you are the one who is sick, they feel helpless.
    Thank you for this beautiful and moving post.

  • Slow-growing, long-term, with a chemical in your blood they recognize…no wonder they were prepared to not do the surgery. Sounds like they have ruled out cancer.
    So this is just your brain’s way of getting your attention. And everything will be better from here, as treatment will make you feel better than you felt the week before all this started (and the year before all this started). What great news!

  • soooo relieved and pleased to hear it!
    (…but,, but… it would have been such a cool transphenoidal approach!!….)
    really delighted it explains so much and you’ll be back to normal in no time!!!

  • Matt, depending on the scan you can have headphones and such in the MRI machine. You can even often pick your own music. The ne you had doesn’t leave enough room around your head for this though. At least that’s what I was told when I had the exact same scan done.
    I know exactly what you mean about waking up to get well wishes on twitter. I knew my girlfriend would be fretting about the surgery, so I set it up so that I’d be updating while I was on the table. I thought this would distract, amuse, or occupy her. I woke up to over a hundred people wishing me a quick recovery (including one from you!). It did make me feel better to know that some people did care enough to say they wanted me better.
    I am glad to hear that you have some options on how to approach this. Surgery may still be the route you’ll go, but at least this way you can spend some time getting acclimated to this idea.
    One of my suggestions is to ask for copies of your scans. I got a CD full of them and and was able to use a free open source Mac app called OsiriX to view them. I don’t know why it made a difference to me to be able to see this, but it did. I’m obviously not trained to know what the heck I am seeing, but being able to do it at home meant I could spend as much time as I wanted with each image.
    It’s good this was discovered. Hope everything turns out well.
    p.s. can you get PB to make it so we can sign in here and post using our metafilter credentials?

  • Best of luck to you during your recovery; my dad just discovered last week that he had a very large (fortunately benign) brain tumor and had surgery for it Wednesday. We’re starting a long recovery process now, which is a bit daunting, but as you said — it’s nice to know what the symptoms he’s been experiencing the last few years were.

  • Dude, I think the mose horrifying thing in the story was the MRI-that sounds totally unfun.
    Anyway, Ralph and I will keep praying for you…
    Hope you feel better really soon, and hope the meds totally kick that lump’s butt!

  • Sheesh. Glad you’re doing okay. Let’s see if we can get that walnut down to a filbert, eh?

  • Matt,
    I have three friends who have had recurrent brain tumors and had two or three operations to have them removed. The good news is: they almost always stop recurring. These three friends have been tumor-free for 20 or more years now. That’s 100% of all the people I know.
    My wife, Maria João, has advanced breast cancer and I recently suffered a full-on MRSA infection on my prosthetic hip as well as a predictable alcoholic hepatitis.
    It’s boring and frightening and takes a long time to go away – but, it seems to me, you can’t get through life without at least one awful experience which makes you glad to be alive.
    Every single color becomes brighter; every morsel tastes better. There’s no better feeling than knowing that it’s better to be temporarily sick and alive than sick all the time or dead.
    The boredom is the worst. That and everyone around you reducing you to your illness. Distraction and taking every minute at a time is the best strategy.
    Don’t forget that it’s you who decides what your day was like. It’s you who decides whether it was the day you were diagnosed or the day your children kissed you or when you watched a particularly good film.
    You get to decide. Not them. Not the doctors or the onlookers. Or your friends who selfishly want you to be brave and present a happy face, just to prevent them for worrying about you.
    My heart goes out to you – but it’s your heart that matters. And your brain: you didn’t really believe all that intelligence was free, right?
    Think of the tumor as a mass of conglomerate stupidity (brain cells of the same feather) that came together in order to guarantee easy removal amd, most of all, that your intelligence and lucidity weren’t affected – as they would be if they spread about.
    You’re doing the right thing, Matt.
    Keep doing it and all will soon be well. Even if you don’t keep doing it, all will soon be well. But it’s quicker and easier if you do.
    Um abraço amigo,
    Miguel

  • I’m so glad to see this update, and so glad you’re feeling better (well, barring flu symptoms, anyway). I love the image of you crowd-surfing the internet!

  • Came here via a Dooce tweet. After reading this I feel like I kinda know you.
    So since we’re chums I expect you to get better even sooner!

  • No we don’t! …Which is to say, how can you have the full demographic of moderators if you don’t have the tumored and the tumorless, right? Ok.

  • Yeah, I read that too, sorry I forgot to mention it.

  • daughter had it. Half her pre-school had H1N1 type symptoms.

  • Thanks for the full update. Josh and I have been worrying about you. I feel comforted by details (and I get the feeling you do too) and between the details in your post and all the happy anecdotes in these comments, things are sounding really good. It sounds like you’ll probably come out of this better than you went in! Hope you feel better soon.

  • Jonathan ("jonson") Rouse

    An amazing story – I’m sorry you had to go through it, and I hope the worst is behind you. I don’t twitter, so let me add my well wishes to the list here.
    Get better & stay better, Matt!

  • Thanks for the story, it’s great to hear from more people that this isn’t so rare and is frequently manageable.
    Obrigado velho amigo

  • Oh man is that good news. Not only will the tumor go away but you’ll be like a super bike monster. Go team medical science!

  • The reason the docs keep asking you the same questions over and over is to make sure they are dealing with the patient they think they are. It’s bad when they do brain surgery on someone who was in for knee surgery.

  • Good luck to you! Fascinating read about a man with a prolactinoma: Ken Baker’s “Man Made.”
    http://www.amazon.com/Man-Made-Memoir-Ken-Baker/dp/1585420832
    pituitary.org is a great resource.
    Hope you’re on the road to recovery very soon.

  • I’m so glad to hear you’re feeling positive about this. My wife and I have been thinking about you, worrying and hoping. I read somewhere, Twitter or Metatalk, someone joke that a lot of atheists were going to be praying for you. I can confirm that’s true.
    Maybe it’s weird to hear this from a semi-complete stranger on the Internet, but we send you our love and best wishes.

  • Thanks for all the details, Matt. It’s a huge relief to know things are looking pretty under-control at this point, and I’m glad you’re feeling optimistic.

  • Oh yeah, the multiple question asking…while I was in hospital waiting for my throidectomy, I think I was asked about ten times by various people what surgery I would be having. But one of them pointed out that THEY knew what I was there for. They just wanted to be very sure that *I* knew what I was there for.

  • That sounds incredibly trying for you, and I’m sure for Kay and Fiona as well. All my best to all three of you.

  • OHSU is great but because they are a teaching hospital it can often be confusing to patients. You and Kay should keep in mind that you have the right to ask students to leave the room or that you speak directly with your primary physician. I had to go through a series of tests there and they will send in students to take your vitals and do rounds of questioning. After my third visit, I said, I’d like the physician and they had no problem with that. I also allowed only 1 student to watch the procedure.
    It looks like they have a Patient Advocate office, you or Kay might visit with them just to get a good lay of the land.
    Also, I’m going to email you my contact info. I don’t know what kind of support you have here in Portland but if you do need someone to help out, I’m available.

  • Heh, multiple groups of doctors asking you the same thing is our practiced defense mechanism of actually getting the whole story out of most of our patients. Which is sometimes is all about asking the right questions and sometimes ask them twice!

  • So glad to hear that you are on the mend. You are in my thoughts!

  • I’ve always counted you amongst the smartest people I know. Seriously. And now I can safely say that you’re among the bravest. And, like many have noted above, you’re also now in the tiny, elite group of people that have made me cry.
    So happy to hear you’re in good spirits and are on the road to recovery.

  • Keep fighting, Matt. We’re all rooting for you.

  • I’m really sorry you are going through this. I wish you and your family the best and get well soon.

  • Well-shared and brilliantly done. I hope all you have to dread is another damned MRI. (I got headphones in mine but nothing other than a screw to stare at.) Good luck, Matt.

  • Best wishes from Tallahassee, my friend. Thanks to your genius, I am able to participate daily in a remarkable worldwide community. I can’t thank you enough for that.
    Here’s hoping that overwhelming good vibes from your posse will help discourage that rotten tumor!

  • Wonderful to hear your quite coherent tale of a largely incoherent and scary time. Keep up the good work and may your recovery proceed apace.

  • Thanks for the update, Matt. I’m worrying a little bit less, but will continue to send good healing vibes your way.

  • Looks like robotjammers.com isn’t registered. I smell an opportunity.

  • Hey, I have one of those! A prolactinoma, that is. I’m a lady, so once it got big enough, I stopped menstruating; therefore, I went to the doctor pretty early and they figured out what it was before it got walnut-sized. I’ve been on cabergoline for about two years now. It has worked perfectly; no side effects, my blood work shows prolactin levels going up, and a bi-yearly MRI shows the tumor shrinking. I hope you have the same experience!
    For me, the worst parts were the MRIs and the monthly blood-taking, but once you start responding to the medication, they tend to back off on the frequency. From what my doctors have said, most people never end up needing surgery for a prolactinoma, because it can be managed through medication.
    Cabergoline can be kind of a pain in the ass to find, though; smaller pharmacies don’t usually carry it.

  • My dad has the same pituitary tumor. It was discovered over 20 years ago. He has been taking medication to shrink the tumor and also inhibit any more growth. He’s just as healthy as ever today.
    Sorry that you had to go through such a scary experience. It looks like you are in great hands. Good luck to you!

  • Best wishes, Matt; glad you are in a spot where you can get a good night’s sleep before making a decision.

  • Couple of things:
    1. If you ever do need a spinal tap, contact me. I’ve had one and as bad as it is, it’s not that bad.
    2. MRIs CAN provide music – they have special headphones and can give you whichever radio station you want. You’ll do best to keep your eyes closed once you slide in so you don’t have to see the tube’s ceiling an inch from your eyes.
    3. They keep asking you the same questions for two reasons. One is they’re paranoid about mixing up patients so they want to make sure they’ve got the right guy, and the other is to see if anything has changed, or your perception or memory of what happened has changed.
    Very glad you’re feeling better.

  • I’m glad you’re feeling better – or well enough to write this. I think the whole internet will be relieved when you’re back to 100%. But your story is so well written – it made me laugh and cry and laugh again.
    Thanks for sharing it.

  • Thanks for telling your story (so far). Glad your experience at OHSU was, for the most part, positive. They should take your comments to heart. Both my kids were born at OHSU – you’re in good hands. Keep us posted. We are all rooting for you!

  • I don’t know you, never heard of you till I saw some tweets about you. I’m writing because you’ll probably find tons of people telling you they have the same thing (like me!). It’s way more common than you realize till you have it and start telling people about it and they start telling you they know people who have it! Anyway, mine’s not as big as yours, but I’m being treating with meds (though not hormones…maybe it’s different for a man) and doing just fine!

  • So very glad to hear the update, and I hope the meds do the trick and surgery can be avoided. Those MRI machines are horrid, aren’t they? I have to go in for one soon, and fortunately they gave me a prescription for some nice meds to get me through it. Be sure to ask for that if you can’t handle the machine.
    Sending you all lots of love as you get through this!

  • +1. Anyone who can make Mike cry is a hero in my book.
    Get well soon, Matt.

  • Matt, thanks for sharing this story with us! You are definitely crowd-surfing the Internet! :)

  • get better, man.

  • Thanks for the update, great to hear you caught the Twitter wave when it mattered. Groove to the Hodgman tweet, in particular! I kept seeing your iChat icon and thinking, ‘oh that means he’s fine,’ which is of course absurd.

  • best wishes from Glasgow, Scotland Matt. Take care,
    CH.

  • What Byrne and Ginevra said.
    Glad you get to treat it with pills, and that if you need it you have a great surgeon and an easy brain surgery (if there is such a thing).
    My mom was on cortisone for months years ago, that stuff is nasty but does the job I suppose. She spent her nights on it redoing her address book in very shaky handwriting.

  • Feel better soon, Matt.
    My mom had a benign tumor at 48, had the surgery & lived for another 20 years happy as can be.
    Here’s hoping the hormone approach is successful & manageable.
    best wishes,
    yoga (MeFi) @ecomod (twitter)

  • Wishing you better very soon Matt.

  • Best of luck and get well soon, Matt. The whole Internet is pulling for you.

  • jmcname@gmail.com

    so does this mean you’re not going to race bikes today?
    we’re thinking about you but will not be coming near you until you’re rid of H1N1. warmest wishes..jefe and family

  • Darryl (The Deej)

    Thanks for the update Matt! Get better ASAP!!! I want to see you again at MaxFunCon!

  • Holy moly! Best of luck shrinking that tumor! From now on anyone bitches to me about having just the flu I will laugh at them for you.

  • Seems like you´re in good hands, but best of luck all the same from Norway.

  • What an ordeal. So glad you’ve got some answers and I hope the flu lets go of you soon. I was going to order you this book called: “I Had Brain Surgery What’s Your Excuse?” but I’m glad I don’t have to! Thanks for taking the time and energy to write us a detailed update, we’re all rooting for you.

  • Glad your back at home and good to know that meds will be all it takes to get you back to better than you’ve been in years.

  • More get well wishes for you and a big hug for your wife. My 37 yr old hubby had a stroke this time last year and I was terrified. Anything to do with the brain adds an extra level of “Oh Crap”. He had to recover but he is fine, as will you be, but I wanted to show some love to your wife because I know EXACTLY how she feels. Hug your girls close every day! That’s the best medicine!!

  • Awww… Met you via Twitter but wanted to leave a comment to keep the internet crowd surf going. Get well! Lotta folks pullin’ for you.

  • Wow – that was equal parts fascinating, terrifying and heart-warming. I’m so glad you have what sounds like a manageable diagnosis and I hope things continue to improve from here.

  • Take care Matt. Thinking of you here in London. Phil.

  • Thanks for the update. I was worried about you, sir. So glad to hear you’re getting such good care. (Sidhedevil from MF)

  • I hope you get well soon, Matt. This story is really touching and upsetting, and I think it’s courageous of you to share your prognosis and treatment with the world. I hope to see you back on the bike soonest. Also, I guess no more Churchill naps for you.

  • Matt, I am a brain tumor survivor (27 years post-opp). My thoughts are with you. Please let me know if there’s anything i can do to help. – Steve

  • I have the same thing. Just a suggestion – take Cabergoline not Bromocriptine – Cabergoline doesn’t make you feel as sick, I’ve tried both. Good luck :)

  • Ooh, the old “my kid brought it home from school” scenario. I’m convinced children are underutilized as weapons of germ warfare.
    Glad to hear you’re getting good medical care and that your prognosis is good, Matt. We’re all thinking of you and hoping good things for you.

  • Matt – so glad to hear you’re back home, and I hope the drugs clear up the problem.
    Coincidentally enough, a family member was recently diagnosed with a pituitary gland growth, but further investigation found that it was congenital – i.e., it had been there for a long time but had never been found because they’d never gotten scanned there before.
    Anyway, I hope you return to full health soon. Good vibes from here in NYC.

  • Much love to you, mathowie. Get well soon.

  • Thanks Mark. You know whenever I was frustrated by something at the hospitals, I kept thinking “I hope an actual patient like me speaks at GEL Health someday instead of a bunch of medical professionals that have never experienced their own procedures.”

  • Glad to see a positive update, Matt! Best wishes to you.

  • Thanks for this post. What a huge relief, and it sounds like once this is treated you’ll be feeling better than you have in years!

  • That’ll teach me to be offline for a bit, just saw this. Our thoughts are with you!

  • for whatever it’s worth, odin and us are sending good healing vibes your way. thanks for the update.

  • Gotta love the fast internet. We actually share the same connection as OHSU to the interwebs here in PSUs on-campus housing. Never before have I actually noticed an Internet speed boost when going from 802.11g to 802.11n. I’m so going to miss nabbing stuff at 6MB/s when I move on.
    Get well!

  • Best wishes from North Carolina. Thanks for sharing your story, and I hope the tumor responds well to the hormone therapy and that life soon returns to “normal” for you.

  • Thank christ. I want to hang out with you again next year at MaxFunCon. TAKE CARE!!!!

  • Best wishes for a steady and swift recovery, Matt.

  • I hope everything ends well!

  • Matt, thank you so much for sharing your story. I’m relieved that you’ll be able to go the medication route for the time being. I hope you feel better soon from the horrendous flu and that your treatment for the growth is smooth.

  • I (female) have the same condition that you have, it was diagnosed 11 years ago and i have managed it with gradually smaller doses of cabergoline ever since. I am at the point where it has shrunk to where it might be possible to stop taking the drugs.
    While I realize everyone is different – I did not go through what you went through (and like everyone else, glad to hear you came out okay!) – but it might help you to know that it’s possible to live with it.
    Your story has made me get off my ass and call the endo and go in for my yearly checkup, which I have been putting off for stupid reasons.

  • Matt, wishing you all the best. Good thing they caught it early, so we can read your ramblings for the next 50 years …

  • Hey Matt,
    Jason and I are rooting for you and sending you and yours our love and support and prayers.
    Hoping that everything goes smoothly from here on out.

  • Thanks for sharing this story… A big hug from Italy

  • If you didn’t get your bespoke suit yet, you might want to put it on hold until you settle into your new, tumor-free brain and corrected-hormone body.
    I’m glad at least one good thing has come out of this H1N1 mess, who knows how long your little friend would have remained undetected without it?

  • Best wishes from Bangladesh and a long time reader. Hope you get well soon.

  • I’m so glad that things have ended up in such a positive way, and that your’re viewing all of these events as an upside. A world without you would be a lesser place.

  • I had a prolactinoma on my pituitary gland. The pituitary is about the size of a pea, but the tumor was about the size of a grape. We tried treating it with bromocriptine at first, but that made me too sick to function, so we switched to cabergoline. After a couple of years on what turned out to be a massive dose of cabergoline, the tumor was undetectable on MRI scans. So, if one absolutely has to get a tumor in one’s head, a prolactinoma is the way to go.

  • Thanks for the awesome hospital story, and best wishes as you continue to kick this thing’s ass.

  • Glad to hear things are looking up for you. I hope you’re feeling much better very soon and the hormones work their magic.
    Sending good thoughts for you, Fiona & Kay.

  • Warm thoughts aimed from Oakland atcha, man.

  • Get well soon Matt! I hope the non up-the-nose-bone-removing-brain-slicing works! If it does not, though, sounds like you’re good hands.

  • Matt you are such an inspiring gem of a person. I hope the treatment makes you feel better than ever.

  • I am glad that this seems less troublesome. I went through a scare myself recently.
    I hope to get up to a PDX meetup one of these times and meet you and the rest of the Portlanders.

  • Awesome result for you. I had the same thing diagnosed 3 weeks after we got married, but thankfully before reaching the seizure stage. I was given the choice of drugs or brain surgery. Like you, it was a no-brainer (all pun intended). Unfortunately, for me, the bromocriptine made life hell. Adjusting to it will not be fun, but 99% of people do adjust to it with time and are fine with no lasting side effects. For the other 1% of us, surgery is a great option. I can’t say enough good things about my surgeon and how well it went once I decided to go that route. It’s now 13 years later, and I’m 100% with no regrowth, and no need for replacement hormones. You’ve got my email now, feel free to contact me if you have questions from someone who has been there and done that! (Granted, I’m a total stranger, but still a nerd who knows…)

  • God bless you man! You’re in my prayers. Get well soon!

  • Best wishes for the speedy recovery, I am just glad you are going to be ok…very scary in the first stages of your ordeal…esp when i have other family members giving me the bits and pieces of what could be or what it should be…Get well and recover!

  • Going in through the nose to get a pituitary tumor: Endoscopic Endonasal Approach.
    When I heard about your situation yesterday, I shuddered at the prospect of traditional cranio-facial surgery. It’s the only option for many types of tumors, but it’s a rough recovery compared to Endoscopic Endonasal Approach (EEA).
    For people who don’t know, EEA is a minimally invasive brain surgery approach whereby a tiny endoscope and is inserted through the nasal cavity and into the brain. It is capable of reaching a remarkable (and increasing) number of locations inside the brain, and recovery from EEA is relatively quick and complete. In combination with shrinking techniques like Gamma Knife, EEA has an EXCELLENT history of safely and effectively removing pituitary tumors like yours.
    I have never had a brain tumor, or the procedure you’re being prepped for. But last year I researched both deeply – including having read scores of patient outcome studies – while doing the IA for the website of the pioneer of EEA, Dr. Amin Kassan of UPMC here in Pittsburgh. This is not a plug for either Kassan or UPMC. It is a note of encouragement and hope for you, Matt.
    The stories and studies I read about prognoses and EEA outcomes blew my mind. There’s no other way to put it. I had never been so moved by the results of compassionate, brilliant doctors’ drives to advance the effectiveness and quality of their practice. What EEA has done for brain surgery patients is nothing short of awe-inspiring.
    It’s beautiful, how many people are pulling for you, Matt. Count me in. And I hope it further bolsters your courage, and brings you some comfort, to know how truly great the outlook is for your condition.

  • Matt, one side effect of your journal is that it demystifies a hospital experience. So, in a way, you are helping others who might be confronted by sickness, hospitalization, and the obfuscations that often comes with it.
    Second, it reminds me that any hospital patient needs an advocate, someone who can both help you understand the mountains of raw “data” you’re being thrown and to make sure that your best interests are kept at the top of the heap.
    Third, it’s wonderful to have friends like Jason who can provide you with good information about your caregivers.
    And lastly, what an interesting experience (and glad it looks like it has a happy ending/beginning).
    Be well and ride hard. ;-)

  • Hi Matt,
    Just got reminded by my friend Fil, who’s been organizing events for them, of http://braintumor.org
    He says there’s loads of good “so ya just found out ya got a brain tumor” info on there.
    Probably already on your bookmarks, but just in case…
    hugs,
    Dinah

  • Get well, Matt. I’ve been following your blog for years and years. You’re important to the internet, and to me. Maybe that’s weird but maybe that’s just how things are now with technology and people.

  • Hang in there, Matt. You’ve got a great outlook on things, which will take you a long way through.

  • Great informative and well written post Matt. Sending love & support from Santa Barbara. Get well soon!

  • Excellent description of the hospital patient experience. Having recently gone through my own unexpected hospital stay after a random mugging and gunshot wound to the chest, I am intimately familiar with the fog of which you speak. Unfortunately, having spent my time at The University of Louisville ICU, I am not so familiar with the killer WiFi.
    Furthermore, the outpouring of support facilitated by twitter and facebook has renewed my faith in the utility of online social networks.
    I hope your treatment continues to progress and that you make a full recovery.

  • tl;dr
    Just kidding, Matt i wish you a whole lotta something in the form of good health and a speedy recovery.

  • Wow, Matt, we don’t know each other but I had a strangely similar experience recently. Things are looking up for me as of yesterday… the drugs (vs surgery) seem to have really helped so far. Thinking good thoughts for you and a speedy recovery.
    -sarah

  • Wishing you the best with your recovery and treatment! I had my second pit. surgery at OHSU – they did a good job, but if meds will work for your tumor, all the better!
    Take care.

  • dang, Matt! feel like i’m really behind, just having heard this. best wishes!

  • Holy cow.
    Damn, you’re a good writer.
    Get well.

  • That’s a crazy hospital story, but I’m glad you’re on the mend. I was really feelin’ you re: the MRI, those machines are scary as hell! Anyway, get better soon Matt!

  • That’s a wonderful, informative post and I’m really glad this is treatable. I know it’s terrible, but I keep flashing to that commercial where a guy is walking through an office and says, “I’ve got the company’s entire strategy right here” and points to his head, right before walking into an open file cabinet and knocking himself out.

  • I also had a tumor on my pituitary gland when I was 18 years old. Same thing…close to the optic nerve, could possible make me lose my vision, prolactinoma. I tried the hormone medication but it made me incredibly nauseous so I had it surgically removed. Up under the lip, through the nasal cavity and voila. I didn’t even have to shave my head for brain surgery. Granted, it’s a crazy experience to have surgery on your brain, but from what I heard, this is the best of the brain tumors to have ;)
    I hope the meds work for you! My neurosurgeon was also incredibly positive about the tumor’s reactin to the medication.
    Best wishes!

  • All the best of luck and healing for you from Holland

  • I haven’t been to your site in a long time. Wow what a story. I wish you the best. I worked as a pharmacist for about 35 years and I can tell you there are a lot of people that like codeine cough syrup.

  • Fantastic update. I’m really glad to hear that you have a non-invasive way to try to deal with this. In the end, all that clean living will pay off.
    As for the MRI. I had one last year for a back thing and I’m a bit claustrophobic. They gave me shielded headphones of some sort — horrible sound, but better than full-volume “Crack! Crack! Crack! Mmmm! MMMM! MMMM!” for 45 minutes. Kept my eyes closed the whole time and made it. I imagine headphones would probably not work when they’re photographically slicing and dicing your head with magnets.
    Looking forward to updates on this and hearing about class wins in the coming year.
    All the best!

  • Wow, that was a really well written story of what happened, thank you. I don’t know you and I missed all the Twitter crowd-surfing somehow but I have been diagnosed twice with high levels of prolactin, only found when trying to get pregnant, and both times it was immediately corrected with bromocriptine. My first doc said it was totally common, and asked if I ever had headaches or vision problems, but never even suggested an MRI. My second doc asked if I’d ever had an MRI to check for a tumor, but didn’t go any further than that. Now I’m sitting here wondering if I should be retested and get an MRI, just for the heck of it. Anyway, good luck.

  • Geez, Matt, I’m coming in late on this story. Very glad you’ve gotten this prognosis and hope to see you around Metafilter for, like, forever.

  • hello. heard about you somewhere on twitter. glad i stopped by to read your account today. it’s amazing to hear it from the patients point of view. i had a 10 year old nephew that had a brain stem glioma and took lots of hormones for over a year. his prognosis was never very good but they did what they could. he sadly passed away in 2003 after trying like hell. i am glad to your prognosis is good and that you will hopefully be taking these hormones for the rest of your life… you are obviously a huge asset to our internet world and the real world. thanks for being so honest in sharing your story. i’m sorry this had to happen to you… take care! love from us in israel.

  • Matt,
    Not sure if this helps or not- but my mom had a pituitary tumor about 15 years ago. She successfully had the transphenoidal surgery- the tumor was removed and she has had a great recovery. She sometimes has some problems with her cortisol levels- but overall is doing really well. My thoughts are with you!

  • all the best to you Matt – I hope you are feeling better and better every day.

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