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 thoughts on “Adventures in brain tumors: part one of many

  1. 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?

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  2. 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.

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  3. 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.

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  4. 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.

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  5. 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.

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  6. 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…)

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  7. 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!

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  8. 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.

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  9. 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. πŸ˜‰

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  10. 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

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  11. 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.

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  12. 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.

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  13. 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

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  14. 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.

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  15. 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!

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  16. 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.

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  17. 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 πŸ˜‰
    I hope the meds work for you! My neurosurgeon was also incredibly positive about the tumor’s reactin to the medication.
    Best wishes!

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  18. 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.

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  19. 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!

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  20. 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.

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  21. 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.

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  22. 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.

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  23. 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!

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