Post-Op 2

The after effects of this past surgery are much different than my first. 

- My vision is significantly worse in my left eye.  Part of this is because one of the remaining tumors (I had three left at the beginning of this surgery and I now have 1.5 - they couldn't even attempt one due to how far into a ventricle it is, which we knew pre-op) is described as "velcro" and the surgical team tried about everything to get it off, as radiation on the optic nerve is less than ideal.  The tumor is still on the optic nerve, so radiation will need to be tried, but it will be the 5-8 week low dosage of radiation in August/September versus the 1 week Cyberknife.

- The headache pain is more of a constant hammer rather than a radiating pain.

- The post-op prescriptions are wreaking havoc on my hormones, but it's a trade-off between temporary hormone insanity and brain swelling.

- Cosmetically, my face is a little lopsided.  There's still a little bit of swelling which will go away, but due to my anatomy (my chewing muscle and the size of my frontal sinus), the team had to do a little internal reshaping of the left side of my face. It's not terrible, but it does look like I'm permanently puzzled about something.

- The disequilibrium is totally weird.  I can walk and balance, as long as I'm focused.  However, the swaying particularly as I try to eat, is a little bit funny.

- I have an awesome scar.

Left Frontotemporal Orbitozygomatic Craniotomy

So my next surgery is June 4.  Half the vision in my left eye is gone, which apparently is being caused by three remaining tumors sitting on top of the left optic nerve.

Above is a picture of the two bone flaps that the two surgeons will remove after they make an incision from just the right of my midline at my hairline to the middle of my left ear and pull down my face (my face!!!).  I'm really curious how the surgeons work around my eye to cut the bone behind it.  Then the surgeons will try to resect (i.e., cut into) as little of my brain as possible to get to the tumors on my optic nerve and the part of one that is extended up into my left ventricle.

Here's a paper co-written by Dr. Spetzler from Barrow (my surgeons are Dr. White and Dr. Little).  Every time I read it, I have a little freak out, but each time my freak out is a little less (or maybe not).

http://www.mc.vanderbilt.edu/documents/singerlab/files/Zabramski%20et%20a.pdf

I've been told that the likelihood of getting all of my tumors is slim and that the goal is get create separation between the optic nerve and any remaining tumors so that I can have radiation (i.e., CyberKnife) in September.

Grizz's 40th!

Cheese

Another J&J cheese:

Istara Ossau-Iraty:  A classic French semi-hard cheese made from sheep's milk.  It's smooth, light, and creamy with just a slight hint of nuttiness. The flavors come in waves starting with a hint of salt at the beginning, progressing to the creamy sheep flavor, and ending with a rich tang.  The rind is exceptional and changes the experience considerably.  In other words, it's delicious. 

Thank you!

Cheese

Liz and I are not on our way to Paris and Barcelona (we had tickets to leave today, but well, you know, the tumor decided otherwise), but that doesn't mean we're not eating good cheese.

Our good friends, John and Jamie P., sent us a surprise package with four cheeses.  The first:

Pierre Robert: an aged, pasteurized, cow's milk cheese from France.  Buttery rind, with a sweet, semi-hard inside.  Very smooth.  This 3.5 oz cheese lasted about 30 minutes before we finished it.  We're usually not like that with cheeses, but we couldn't help ourselves.

One down, three to go.  Thank you J&J!

Phoenix Brain Tumor Walk

My family is participating in this year's Phoenix Brain Tumor Walk on March 16.  If you're interesting in donating to this worthy cause, or participating, please do so by clicking on the link below:

Phoenix Brain Tumor Walk

"Portlandia"?

What I learned in Portland this week:

- Women wear big giant glasses
- I'm in the beardless minority
- Single speed bikes or die
- Bikers are crazy
- If the forecast says rain, it probably just means cloudy
- On the off chance it does rain, it'll be mild
- No more leather soled shoes
- I've been to lots of cities where food trucks are the rage, but Portland is ridiculous.  Whole parking lots are dedicated to them (i.e., I saw one lot with almost 40 trucks crammed in)
- I didn't hear "cacau" once, but I wanted to say it, but not for the reason you think
- If I was a beer drinker, I'd be in beer drinkers heaven
- The people begging for money aren't nearly as aggressive as those in the SF Bay area
- Having a car is very inconvenient
- It has an awesome foodie reputation and I've eaten lots of good food, but haven't had anything special yet

More to come.

A Summary

I'm a 39 year old male and had my transsphenoidal surgery at Barrow on January 23.  My tumor was a 3.7cm x 3.7cm x 3.7cm non-functional pituitary macroadenoma.  It had four oblations.  Unfortunately, two of the oblations remain post-surgery and I'll find out after my 3 month follow up MRI what we are going to do (i.e., radiation or a craniotomy).

Post-surgery, my endocrinologist told me that I have pan-hypopituitarism and have had to take testosterone and hydrocortisone.  I'm still debating whether the testosterone or cortisol withdrawal were worse.  The testosterone withdrawal made my skin burn and caused insane night sweats (i.e., I woke up in pools of sweat).  The cortisol withdrawal made me feel like I was going to pass out and die.

Additionally, I have a small csf leak (I take my temperature several times a day to make sure my temperature hasn't gone above 100), which tastes pretty awful, and my headaches are worse now as compared to pre-surgery.  I still have moments throughout the day when I feel woozy and need to take a break.  I also have real problems sleeping, as the headaches wake me up.  My average wake up time is 2:30.  The long days have given me the chance to watch almost all of Arrested Development (what a great show!).

All that being said, I'm much happier and calmer than I was just a week and a half ago.  I was an irritable mess.  My deepest apologies to those affected.

I shall now stand up and hope my back stops sweating.

Side Effects

Some interesting side effects:

- I can only really taste sweets right now.  Salty and savory are beyond me (temporarily).  I can get spicy, but only on the side of my tongue and it's just the heat, not the flavor.  Chipotle, which I love, was tasteless mush.  Good thing it's temporary.

- Man-o-pause: Hot flashes and night sweats (standing and just dripping).  Very treatable and in fact, I'm looking forward to it.

- It's amazing how much your mood and overall feeling of comfort is dependent on the pituitary.  Spatial awareness, balance, nausea, etc.  All the hormones that the balance these out for us are managed by this little pea sized gland.

Going EMO

The doctor wouldn't let me keep even a small piece of the parts of my tumor that he was able to remove.  He said even if he could give it to me, it had the consistency of oatmeal.  I always imagined it being more like a rubber bouncy ball. 

So the good news is

umm

well

oh, yes.  I wasn't part of the <.1% that die during surgery.  I know I should be more grateful.

The bad news is that I'll be back in three months for what appears to be some kind of awfulness.  Not even my pain meds can ease the dread of what's probably yet to come.

As you can tell, I'm feeling pretty emotional and sharing.  I probably was all along, but my tumor probably repressed my need to share my emotions.  So if I start crying on the phone or getting all emotional on you, it's not because something terrible is going to happen, it's because something amazing has been taken away.

Here's goodbye to my Vulcan self.

And always remember, Dirtbiking Saves Lives.

The Latest ...

My surgery is on 1/23.  This surgery will be endoscopic transsphenoidal (i.e., through the nose).  Due to the size and placement of my tumor, particularly the nobules, there is an 90% chance I'll need a follow up surgery in 3 - 4 months via craniotomy (i.e., cut open the skull and create a bone flap).  My vision is pretty jacked up.  The surgery could make it worse. 

Despite all of this, I ate some amazing cheese this evening.

Rush Creek Reserve: An American cheese in the fashion of Vacherin Mont d'Or.  I'd need to do a side by side comparison to tell the difference.  Rush Creek Reserve seemed a little more smooth and less tangy.  It was delicious.

An email ...

from a good friend.

"Studies have shown that some tumors are caused by compulsive masturbation on business trips. And the growth of said tumors is heightened when said masturbation happens when a fancy leather belt is placed around your neck.

I heard that's the kind of tumor you have. Is that true? Let me know because I want to write about you on my blog.



Hope you're gonna live dude."

Some of you know him.  First one to guess correctly gets to name my tumor.

Plankton

Sorry, that was my tumor talking.

Whoa!

I just watched a video of a 2.5cm pituitary tumor being removed.  Lots of cutting.  Then I made the mistake of reading more about my tumor's tentacles and where they are located.

Shit.

Cheese

Latte Da Caerphilly - An American aged goat cheese.  Semi-hard cheese full of buttery goat flavor, with just a hint of almonds.  Very nice.