A Whole Lotta Nothing

Two year tumor update/Good bye to mom

Today marks the two year anniversary since I had the whole tumor scare. I'm feeling great and almost back to full health but the anniversary is bittersweet since by some strange coincidence, today also marked the date of my mother's funeral, which I've talked about a bit on Twitter, but I don't think I've mentioned here.

My Mom

(Flagstaff, Arizona xmas time 1986 (I think). My brother, me, mom, and dad)

Back in July/August, my mom had a mammogram and they discovered a growth that was deemed stage 1, highly treatable breast cancer. In late August they operated and the surgeons were surprised to find extended growth of the cancer into her lymph nodes, but removed it all and gave a good bill of health. Chemotherapy was set to begin soon after but further tests showed complications with her liver (also showing cancer) and ultimately it seemed her cancer was stage 4 and beyond, and her liver functions soon started to break down. By October she was having trouble walking, eating, and talking, ending up in the hosptial in the last week of that month. Last Wednesday November 9th around 8:35am, she passed away with me, my brother, and my aunt by her bedside. Today's funeral was attended by about 60 people and I got to hear lots of great stories about her from friends and family.

At the funeral I shared some memories of my mom working very hard her whole life, never really knowing how or when to relax. I meant to tell a great story of a vacation we once took as a family. It was done in our typical style of waking up one weekend at around 4am, piling in a car in half-sleep while my dad drove hours and hours north towards our destination. We'd arrive in late morning and start hitting museums, state parks, zoos, one after the other until it was quickly dinner time. I recall running into some family friends that also vacationed in a coastal town we visited and my mom asking them how their day had gone. They said they just plopped down on the beach sand and relaxed all day, doing nothing. 

I remember my mom was livid back in the car. She couldn't believe this family of friends simply sat around all day instead of doing all the activities we did. She thought they wasted their vacation but after feeling exhausted by the breakneck pace of our trip I wished we had a bit more downtime like that other family got to enjoy.

I spent a lot of time with my mom over the last three months (thanks JetBlue Bluepass for all those flights to Long Beach) and I finally got her to accept a ticket to fly up to Oregon and spend some time with my family. We saw the coast, we saw the falls, we ate like kings at all the finest restaurants. I took her out to see Moneyball in a theater which she enjoyed (she was a huge baseball fan) and afterwards she admitted the last movie she saw in a theater was Dances With Wolves. I like to think despite her failing health I taught her how to relax the last few months of her life and enjoy some quiet time to herself.

Today's funeral helps close a chapter in my life but also reminded me of all the good times I had with my mom, and sets the stage for moving on in my life without forgetting her. So long mom, I'll miss you greatly.

Tumors

In tumor news, there isn't much to tell. My tumor stabilized nearly a year ago to about 1/3 of the original size. My medications have been reduced (but not yet eliminated) and all my vital signs and energy levels are back to near normal. I can't believe it's only been two years since the diagnosis, I feel like I've lived another ten years since and it helped me re-evaluate many things in my life. I feel like the tumor scare has taught me to appreciate all the people, experiences, and things in my life and I've done my best to live a fuller life while I can. In 2012 I'm going to be doing a lot of things I've always wanted to do, and they will mostly involve travel to places all over the world (planning on Hawaii, New Zealand, Belgium, Yosemite, Italy, all in the first six months). A tumor taught me that life can be brutal and short and to relish our time here. Dreams are good to have but even better to live up to and there's no reason to put them off any longer.

One year later, and some updates

A year ago today, I had the surprise of my life. Thanks to Charlie Park, you can relive the outpouring of support I described in my first post about the diagnosis on the site mathowielove (along with this explanation of it). I get a lot of email from people with similar health issues and from friends and family and thought I should post an update and recap how the last year has gone. 

A year in 30 seconds

Last November feels both like it was just yesterday and it was ten years ago in my mind because so much has happened. Immediately after getting out of the hospital and starting on the mend from the worst flu I'd had in years, it was just over a month later I got some good news that my tumor was shrinking thanks to a drug regimen. My other vitals were lagging behind but by March of 2010, most of my hormone levels were approaching normal and I was beginning to feel better. By Summer, I'd gotten my first not-so-great prognosis that the tumor had stalled in size and was sitting at 50% of the original size, with my hormones still bouncing back into the lower limits of normal. By mid-Summer, I started a course of human growth hormones to gain some energy but I also cut my steroid dosage in half, so the effect of each counteracted and I've felt about the same. 

Overall, after the initial joy of the tumor shrinking significantly, the rest of the time has been somewhat frustrating, as I've had to adjust to new harsh drugs and then wait for my body to react and then level off with each change. Monitoring the health effects has gone a bit slower than I'd like, with measurements taken every 3-4 months to assess my progress.

For the past several years I've been tracking my physical activity on my bike (miles ridden, heart rates, wattage pushed into my pedals) and racing off and on, and I've noticed not too much improvement this year in terms of my physical performance. My wattage numbers are up slightly, but so is my weight (significantly) so it's basically a wash and I'm about as slow as I was before the tumor diagnosis. Overall, I don't quite feel "normal" yet in terms of physical performance for a dude my age/fitness/size/etc.

The future

In a few weeks I'm doing a full day of testing, including another MRI to see where the tumor size stands, some thyroid testing to see how that is working, and some hormone tests. I'll probably have results by mid-December and I'm hoping we'll see continued stabilization/shrinkage of the tumor (growth would make surgery necessary) and figure out what is keeping my hormone levels still a bit low.

It goes without saying I've been very lucky so far and couldn't have done so well without the support of my wonderful family and friends, and for that support I thank everyone that has said and done nice things over the past year. It's really meant a lot and helped me out immensely.

Adventures in brain tumors: My first not-good news

Today I got to see images from my most recent (and third) MRI brain scan and with it, the first not-great news to date. While my second MRI showed extraordinary promise with a near 50% reduction in tumor size, and over the past few months I've experienced a return in many of my hormone levels, the results today weren't great. My most recent scan showed negligible change in tumor size (we were hoping for continued reduction) but worse than that, the scan showed two different densities in the tumor, with most of the tumor looking to be quite dense. It could be caused by a variety of things, but the most likely result is the tumor will not likely be getting much smaller. We'll try higher doses of medication and keep repeating these brain scans every 6 months going forward. While the tumor didn't change in size, if it does start to grow again it will be time for surgery to remove as much as we can.

So far I've been lucky in getting good progress reports every month or so as we've done oodles of testing so today's results were the first time it really dawned on me that this is a serious ailment and not likely to go away anytime soon. I know this all started with a pretty big health scare for my friends and family, but to be honest over the past 8 months since it happened I felt like my friends were taking it harder than I was. Everywhere I went since it happened, people corner me to ask how I'm doing and I've often felt a little guilty as their concern for my health seemed to be greater than my own. I was making extraordinary progress this whole time and I guess I figured I was still relatively young and invincible and this minor problem could be easily licked, so today was the day it actually dawned on me that this is serious.

This may never go away completely. This may very well require drilling holes in my skull to try and fix with no guarantee it will be a permanent fix.

Lastly, I found out that even if we can hold everything steady, the medications I'm on have side effects from prolonged use. One shows increased mortality over long periods of use. Another can affect my heart valves over time and leave me with some pretty serious heart disease. I went to the doctor today hoping for not-bad news (I didn't want to hear about a larger tumor) but 12 hours later as I write this, I'm kind of surprised how my not-bad-but-not-good news is really the first time this whole thing started to feel real.

Adventures in brain tumors: 90% good

It's been a while since I've posted a health update, but I've been going through tests every 3-4 weeks for the past six months and each time I'd tell myself I should make a post after the next set of results, but never ended up posting about it.

The long-story-short is that I'm happy to say I'm still recovering well. It appears that my tumor is still shrinking given the blood workup numbers and I have a MRI in early June to take another look at it to see where it stands. My testosterone finally bounced back into a normal range for the first time in any set of tests, which is another encouraging sign.

I've done several prolonged tests to see how my body produces human growth hormones and that's about the only thing not bouncing back. It appears that the reason I'm tired a lot and recovering from exercise slowly is that I'm still low on growth hormones and may start to take supplements for the rest of the year to see how my body reacts.

Aside from that, my endocrinologist started to discuss the plans for tailing off the half-dozen medications I'm taking over the next few years as I recover further. So in summary, pretty much all good news and I'll post about the results of the MRI next month when I get them.

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.

Adventures in brain tumors: some ups, some downs

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.

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.

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.

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.

Of 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.

Adventures in brain tumors: part one of many

 

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).