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 responses to “Adventures in brain tumors: part one of many”

  1. Best of luck to you Matt… Oh, and nice pattern on the hospital gown… πŸ™‚

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  2. 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.

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  3. 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.

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  4. 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

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  5. 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.

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  6. 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.

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  7. 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.

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  8. Feel better soon, good sir.

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  9. 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.

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  10. 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.

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  11. 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.

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  12. 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. πŸ˜‰
    Glad that so many nagging questions were answered; I’m optimistic too.

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  13. 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.

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  14. 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

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  15. 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!

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  16. 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.

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  17. Good luck, man. You’re a hero.

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

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  19. 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. πŸ™‚

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  20. 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.

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  21. 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)

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

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  23. 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!!

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

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  25. You made me cry. Jerk.

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

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  27. 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.

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  28. 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!

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  29. You made Mike cry. You are my hero.

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  30. 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.

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  31. 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.

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  32. 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.

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  33. 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.

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  34. 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.

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  35. Just wanted to let you know I’m rootin’ for you πŸ™‚

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  36. All the best wishes, Matt!

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  37. Cheers, prayers, and best of wishes from Glasgow. Life and love are so rich and so fleeting β€” glad you’re around for more.

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  38. 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

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  39. 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.

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  40. Best wishes from Scotland.

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  41. 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.

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  42. 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?

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  43. 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.

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  44. 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!

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  45. This is like an episode of House. Best of luck to you, I’ll be watching for updates. πŸ™‚

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  46. 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

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

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

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