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. 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!

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  2. 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.

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  3. 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.

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  4. 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!

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  5. 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!

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  6. 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!

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  7. 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.

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  8. 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.

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  9. 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)

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  10. 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

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  11. 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.

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  12. 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!!

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  13. 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.

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  14. 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 🙂

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  15. 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.

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  16. 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.

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  17. 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.”

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  18. 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!

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  19. 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!

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  20. 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.

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  21. 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.

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  22. 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.

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  23. 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.

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