Adventures in brain tumors: Hormone Medications FTW!

Earlier today I did a full scan of my brain via an MRI procedure. It wasn't as bad as I thought, and I even got to listen to music for most of the procedure (and the radiology dude commented at the end "Nice tunes dude. Tapes 'n Tapes? Love that album").

In the past couple weeks I've felt a lot of changes in my body — energy levels returned to the point I wanted to ride my bike again and I could literally feel testosterone coursing through my veins for the first time in years. I was hopeful these were side effects of the tumor shrinking which would allow my pituitary gland to regain function (it was being smashed by the tumor and deemed inoperable).

An hour after my MRI was done, my endocrinologist pulled up the shots and we looked at them together. She instantly noticed the tumor was smaller, much smaller. More than 50% smaller was her guess. 

This was possibly the best news I've heard in my entire life (after "It's a 7lb 2oz girl!" and "Yes, I will marry you!").

More good news was hearing surgery is off the table, unnecessary as the tumor has shrunk down considerably and will in all likelihood continue shrinking to the point of nearly disappearing, ruling surgery out completely. I'm so glad I didn't let those cowboy surgeons from my first hospital stay drill into my head, as my doctor said it would have likely caused damage as not all of the tumor could be removed via surgery when I was first seen.

The next course of action is to continue monitoring my meds and hormone levels and gradually scale down my medications as my body hopefully begins producing and replacing what I was previously taking. The doctor was hopeful that in six months most of my body's functions could be back to normal with just a few long-term meds to maintain health and replace whatever remaining functions were lost or still on the mend.

So in summary, very good news today, a much better future ahead, and though I'm still not out of the woods yet, things are definitely looking up. And thanks, cabergoline for saving my ass.

In Defense of Twittering During Tragedy

Screen shot 2009-12-18 at 12.07.37 PM
Yesterday, I noticed blogs lighting up as they passed along the story of a mother supposedly twittering while her son drowned and the massive backlash that followed including instant accusations of parental neglect.

The story sounded too good to be true, the kind of stuff people write in their heads and hold in draft mode until the first opportunity presents itself to publish it, so I didn’t read the specifics until this morning at ABC News. As an avid twitter user myself and someone used to sharing information about my life with friends online for 10+ years, I was astounded at the amount of negative attention the mother, Shellie Ross was (and still is) receiving from the story. 

I’m someone in a similar position who posted to twitter (while in my hospital bed) just a few hours after my initial diagnosis of having a large brain tumor, and I have to say it was specifically so I could let my immediate friends and family that follow me on twitter know exactly what was going on as soon as possible. Posting to twitter meant I didn’t have to do a dreaded phone call to dozens of people immediately after hearing my diagnosis, and for me it was both a time saving way to get the word out as well as the easiest way to communicate while I was exhausted and in and out of consciousness in the hospital.

The obvious sticking point in many stories about this drowning incident seems to be about new media and old. No one is surprised at frantic cell phone calls in a hospital waiting room, but apparently button mashing on a cellphone to alert friends via text to twitter is a surprise, simply because it is new.

What happened was a tragedy plain and simple. The family was doing things in the backyard, the pool gate didn’t get closed, and an accident occurred. Some time after (reports vary but it looks like about half an hour after paramedics arrived) she updated her friends and family and asked them to pray for her son. This could have been on the trip to the hospital, as she was leaving home, or when she first arrived. Five hours later he was pronounced dead, and she updated her friends and family with the terrible news. 

I myself posted to twitter five times from the hospital after my initial tweet, bringing people up to speed as I learned more. Half a day after I settled in at home I wrote a blog post further explaining it. I did this again to fill friends in and so I didn’t have to relay the story 1,000 times later. I was commended a lot privately and publicly for being open and honest and sharing my story but to be frank I really don’t know of any other way to be, this is just naturally the easiest way to communicate with friends and (some) family.

Since my parents weren’t tuned into twitter, I did have to call them on that first day, and each day there after. In the end when I got home, I had to call about a dozen friends and family members that also aren’t aware of my twitter account (or even what twitter is), and I have to say those were some of the most difficult calls to make, to drop bad news on happy friends and family. It was hours of work too, to explain and answer questions over the phone.

Twitter is a great tool for personal broadcast to a vast set of friends and family and it’s quickly turning into a new default communication medium for the online world. It can certainly be distracting in the face of day-to-day cubicle work, but in this specific case it appears certainly to me that it had nothing to do with the death and was actually helpful at alerting friends to the accident and later informing them of the tragedy, and mirrors my own use of the service in a vaguely similar situation.

Content sausage factories

This is new to me: seeing a friend's awesome (and creepy) halloween cooking idea (which is kind of shocking and disgusting looking even though it's good food inside) show up in content mills I hadn't previously heard of, like 2leep and odditycentral. The 2leep links show up at the tail end of posts at Inquisitr like this one

So it appears that one site pays another to redirect links to a third, which sucks up almost an entire post's writing and photos (with a teeny tiny link to the original, but there's no point in following), and all three sites are coated in advertising.

It seems like someone has taken the old anonymous image aggregator sites (typically no-attribution russian blogs with 200 images in each post) and propped up a business model on it, but at the expense of the original creators of the content. 

Four hours with a Motorola Droid Phone

Some notes from spending a few hours with my first Droid phone.

  1. The first thing I encountered that drove me crazy was trying to login to my own sites. When I highlighted a text field, it took up the entire viewport in landscape mode, not even showing the label for what I was entering. I had to remember what it was when the label went away, or submit forms to get errors so I could see what the next form label was.
  2. On the Motorola droid, the wake button is on the top, not the home buttons on the front. On the HTC droid, it's not the big white trackball button, but one of the metal buttons on the side marked "end".
  3. No way to just silence text message alerts, had to silence everything ("no sound" not an option for any single noise making feature)
  4. Amazon mp3 store download test — I downloaded whole album, one song had network error, but no way to re-download it as far as I can tell. I bought another album later on while connected to wifi and I think the failed download was redownloaded? I can't tell.
  5. Saved searches are not editable, when you click them, they run automatically as a new search, so misspelled ones stay in your history for ever, no way to pull them up, modify and rerun the search. No way to pull up an old search and add detail when there are too many results, you have to type it all out again.
  6. Onscreen keyboard comes up sometimes in apps, doesn't in others, and I have to resort to the hardware keyboard when that happens
  7. Hardware keyboard keys are too small for my big thumbs, seem smaller than an iPhone's virtual keys.
  8. Icons along the top are cryptic and confusing. Sometimes they turn red with a number, but I have no idea what it corresponds to. tapping them does nothing. I eventually figured out a way to get to a notifications page, but I can't remember.
  9. The hardware/software is different even among things called "Droid". The HTC droid has a lovely theme with a giant clock and weather running based on your location. On the Motorola Droid, I found desktop hacks to try and mimic it, but the apps and themes were clunky and not easily customized. Every basic weather app required I put in my zip code even though the phone has GPS in it.
  10. Way too much technical detail. In the About This Phone section of Settings, you can know the exact kernel version of the phone's OS and build number before you can figure out the phone number of your phone. Was this made for linux system administrators? Also, there are graphs for battery use by application and hardware. Does anyone outside of the Android development team need to know this? When I installed dxTop to try and get weather on my desktop (which didn't work btw), it added two main panels to the home screen, one for pulling up all apps, the other for showing which processes were running on the phone, a sort of virtual command line TOP output. Is that as important as getting to applications, knowing what is using up memory and processing?
  11. The app tab seems like it can infinitely grow, but it is always listed in alphabetic order. You can't put the apps you use most often at the top, I guess you're supposed to put them on your desktop area.
  12. I accidentally added the stupid Corporate Calendar (which is different than the Calendar app that uses Google Cal) to the desktop and I can't for the life of me figure out how to remove it from the desktop.
  13. Is there no mac desktop app for managing media on the device? If I want movies or music on it, do I have to just copy files directly from my file system to a removed SD card and transfer that way? It doesn't seem to mount as a remote disk on my Mac when connected via USB. I have no idea what kinds of video files work on it, and I don't see any where to buy shows/movies in the Market.
  14. The well publicized driving app doesn't have settings for telling it where my home is. That seems like an oversight as every car GPS hardware and software I've used has a big "go home" button this app lacks.
  15. The Youtube app simply lists popular items and has search. I'm signed into Google on the phone, but there's no quick link to my account, my favorites, my videos, etc. I had to search for my own stuff to find it.
  16. The app store title fonts are so large you can't read entire descriptions in portrait mode. On the plus side, if you download a paid app that doesn't work or sucks or wasn't what you were looking for, you can get an instant refund when uninstalling through the Market (but not if you go into Settings and Manage Applications and hit uninstall).
  17. I can't figure out how to remove default apps I will never use, like the Email app (I just use the Gmail app).
  18. I'm generally confused as to what the Back button will do at any one time. The button with lines on it that I think is supposed to be "settings" gives variable results depending on context within apps.

I came at this the same way I came at my iPhone, pulled it out of the box, ran the basic tutorials, and figured it out on my own. I do not consider good hardware and software design to require all users to do Google research on every aspect of a device in order to use it.

If you're a happy android user, feel free to correct me by point number and steps to accomplish what I was trying to do. Also, how in the heck do you take screenshots within it?

UPDATE: I forgot to mention a list of things I think it does better than the iPhone and that I was impressed with:

  1. I like the subtle buzz when pressing the screen. It's a good indicator that a touch was accepted
  2. Refunds for paid apps that didn't work is fantastic. I've probably wasted $50 over the last couple years on iPhone apps I thought would work and be great and were useless.
  3. The iPhone app store is the biggest failure point on the iPhone. I've personally not paid developers to make iPhone apps for my sites fearing the iPhone app produced would not be accepted and I would have spent $5k for nothing. I like that anyone can write Droid apps (but the quality of android apps seen in some casual searches also supports this — I saw more than a few "$search_keyword babes" apps with busty blondes shown)

La Blogotheque takeaway shows

I’m a late comer to La Blogotheque’s Takeaway shows (Andy turned me onto them six months ago). From what I gather, the site is like a French Pitchfork, and when musicians come visit, a video director and sound guy throw some instruments at the musicians and they play wherever they can. Buses, street corners, and hotel rooms are the norm, and the videos (and music in them) are simply amazing.

There’s some magic combo of improvisation with nervous musicians using borrowed guitars, standing in a French street where few people recognize them, while a shaky hand camera captures the unamplified sounds. There’s something incredible about how it all comes together and you’re instantly transported onto the street as a nervous onlooker, instead of an idle observer at a computer. It feels like if a tripod was used, the whole thing would come off as fake like U2 playing a rooftop show, or if the band seemed too rehearsed or comfortable, you couldn’t pick up on the energy of the moment.

They’re all great, but these are my favorites:

I’d never heard Phoenix before but I enjoyed the videos so much that I bought two of their albums off iTunes. Much to my surprise, the sound on their records is smoothed over and diluted, with none of the raw charisma seen in the live taping. I almost want to rip mp3s from these videos and replace the album tracks.

On the plus side, this means they’ll be great live and hopefully next month I’ll see them in Portland.

Adventures in brain tumors: some ups, some downs

Brain information library overlooking Portland

Another week, another set of appointments.

This week I did a long appointment with an eye doctor, had an ultrasound of my heart, and then checkups with my neuro surgeon/endocrinologist. The eye appointment was excruciating as it involved many dilation drops over a period of around three hours. Once per hour I'd see the doctor or a gaggle of residents for five minutes, then they'd depart with a "we'll be right back" and sure enough, 55 minutes later they would return. Not the most efficient use of anyone's time and not the best way to set expectations. The upside was that I am showing no visual impairment beyond what I've already got. This is great news because if I was having visual field problems, spots, or headaches, that'd mean the tumor is butting up against my optic nerves and surgery would be sooner rather than later.

OHSU has their own bottled water

The ultrasound on my heart was done to make sure I don't have any heart valve issues as some of the hormones I'll be taking could lead to detrimental effects on them. I did the same thing about ten years ago when a doctor thought I had a murmur but I never got the results (UCLA Medical center was a confusing morass back then). I'm curious what my heart looks like now. A highlight of Friday's visits was taking the OHSU tram from the old hospital down to the waterfront.

Blood pressure checks are a new ritual

The results of my last endocrinology appointment came up and it seems that my tumor is responding well to the drug treatments, but possibly too well. While my initial thought on hearing we've reduced prolactin amounts by 80% in three weeks was good, it was too soon to mark that into the win column. Too much reduction too fast could lead to an air gap that would leave me prone to infection and even meningitis. We'll do CT and MRI scans to be sure in the future.

First question: did you take your hydrocortisone today?

After that news there was a new blood draw to check my testosterone, prolactin, and potassium levels, all of which were a concern at my first checkups. Thankfully, I'm now hooked into OHSU's patient extranet system so I'm hoping updates will be quicker than once every couple weeks and can be done over email soon after tests are completed.

Adventures in brain tumors: a frustrated start

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

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

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

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

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

So we have to keep on it.