Friday, December 16, 2011

Wrapping up Gig

Its been a heck of a 6 weeks giving notice and helping the company ramp folks up to take over my day to day operations.  I strive to make this departure as seamless as possible including training my replacements and putting things in good order.  We have some false starts on this, so its good that we have 6 weeks to handle this transition!

Initially when I gave notice I was going to try to help the company through the end of year holiday crush when the company peak business/traffic occurs.   But my dear wife easily convinced me of the foolishness of this, after all it was during said peak a year earlier when my first major bleed occurred, and wasn't it likely that I would suffer severe stress and exhaustion this time around potentially triggering another one?  Seemed prudent to wrap up before the holiday madness, thus a last day of December 16th.

But the blood sweat and tears involved in wrapping things up without loose ends is quite a lot and I end up spending a good part of November and December with head aches and other general fatigue from the work and stress of it all.  I hunker down and get it done including ramping a new hire the last few days of my job.

Stress free?  We'll see.

Saturday, October 29, 2011

The Epiphany

I have had dinner with my dad recently as he was in town for a conference.  He has been hearing what a pressure cooker work is and can relate himself.  He also has personal experience with the sacrifices of burying oneself with work, the hard work ethic runs in the familiy :)  He is a doctor and actually he has always worked much harder than I ever have.

His main point: "You are going to kill yourself with this job."  Well that was a close quote anyway.

But what about that "I can do anything and not affect my next bleed" from the neurosurgeon?

My dad has the good understanding that the entire cardiovascular system is interconnected and pressure sensitive, and that driving high blood pressure spikes from stress could potentially create bleeding events even though my cavernous malformation is supposed to be on the depressurized size of the capillary system.  It adds up to some of the symptoms I have been experiencing this year, that I have been facilitating lots of micro-bleed type events and resulting brain tissue aggravation.  Fact is there is not enough data or studies on these things to definitively know what will cause what, in fact the genesis of these angiomas does not seems to be fully understood.

It makes sense though.  I have been materially feeling the effects of work stress on my system and its related to things going on around my CM.  Its a good idea and I take it too heart.  Life is too short.  Besides if I keep on at this rate I might have a stroke or heart attack anyways in the next 10+ years regardless of this rebel in my brain.

Ironically my initial response is one of a double-down "Go Big or Go Home."  If I can get my sacrifice for the company appreciated and understood for the running of over half the business operations to great success, then all the pain and suffering that I have been doing and would continue to do would be somehow justified.

But this does not feel right.  It is not right.  And on the eve of my 36th birthday I send the final "I Quit" email.  It is final this time.  Life is too short, and killing myself literally for this job is not worth it.

Wednesday, June 15, 2011

"I Quit" - But Not Quite

So let me be frank...

This job I have been at is insane.  The highs and lows are amazing, its a total roller coaster.  The industry I am in is pretty unstable, and lot of wild west stuff going on, a real frontier.  Trailblazing.  Outlaws.  You get me.

I have been running advertising operations, revenue operations, technical operations for a substantial business.  I have some help that is getting hired, but this is intense.

I have been working myself to the bone.  Sleep deprivation, late nights, early mornings.  Nights and weekends.  Headaches.  Mid-day naps just to make it.  Long 1 hour drives to work on occasion which is always pretty risky getting back as I am drowsy on the road.

The occasional all-nighter gets me pretty messed up 1-2 days later for at least a day.  Its weird.  I used to be able to push and punish my body without consequences.  But now its like I am paying for my workaholic sins materially.  Remember that neurosurgeon said nothing I can do will affect the next time my brain bleeds?  I am living with reckless abandon.

I have been getting pretty upset of late.  Its really been getting too much.  It just feels wrong.

Somehow despite all odds my boss saves me.  But once someone quits this is usually just a save for a short time and I am fated to be leaving soon anyway.  He agrees he will back off on the pressure and he will take back some of the responsibility that I recently took on.  I will however continue to run the advertising, revenue, and technical operations for the company.  Its pretty stressful stuff.

Friday, March 11, 2011

Get Used to It

2nd MRI results are in!

I have not had a new bleed!  The neurosurgeon explained that apparently between the reappearance of original symptoms and new ones like the pulsing pressure or throb in the roof of my mouth are not uncommon side effects or symptoms of living with a condition like this.  It is supposed that the surrounding brainstem tissue can be aggravated on an ongoing basis.

What was not explained in detail but read elsewhere is that cavernous angiomas are leaky structures so its possible to have ongoing leaking and hemosiderin deposits aggravating the neural tissue and sometimes causing permanent damage.  This activity in the brainstem can be particularly sensitive because of the eloquent (important) location amplifying the effects of even small bleeding.

Saturday, March 5, 2011

Am I Crazy?

Its official.  I am crazy.  I just took on 2x the responsibility at work, adding half the operating budget of the company and the hot seat of advertising and revenue which are the front lines of the companies performance.

My head was already exploding from running the technical operations of a high growth startup.  Am I nuts?

But someone has to do it...

Friday, February 25, 2011

New Symptoms, Full Time Gig Stress

Just when I think I am out of the woods.
Not out of the woods.  photo: Alexander Torrenegra via flickr.

Something has changed in the ramp up to my starting full time March 1st with this company from part time consultant status (the difference between 35-40 hours a week and 50-60 hours, its silicon valley after all).

Some of the symptoms come back in a light way.  Slight numbness of left foot/toes and hand, but more disconcerting is the pulsating pain/pressure that I now have in the roof of my mouth.  I feel it and it seems to coincide with my heart beating.  This is new.  Its unpleasant.  Its frightening.  I notice this peaking particularly while at a conference I am attending on the company's behalf, and towards the end of the day I am having a harder time focusing on the topics at hand and getting a particularly washed out feeling that will be repeated over the next year while under higher stress.

Did I just have a new bleed?  I call to discuss with the neurosurgeon's office, and its suggested that I get a new MRI done.  I just had one done but this had been done with a different medical facility and this new MRI will be done to this doctor's specifications as its the radiology group out of UCSF.

Thursday, February 10, 2011

Don't Operate, but Don't Worry (Much)

My 1st visit with the neurosurgeon!

My father flies up to join me from Southern California.  We have a nice time with lunch and the drive up to UCSF.  This is a nerve racking experience and I am very anxious, it is comforting to have such good company and to help provide input during the surgical consult.  Since this was a rush appointment and we are being squeezed in, we are told that wait will be some time.  The view from the waiting room is amazing and a lovely way to ease into what is an otherwise nerve-wracking consultation.  Points for ambiance!
view from UCSF

There is some good news here, and its all in the silver lining.

Normally it would be suggested to do the surgery immediately, however my cavernous malformation is covered by 1-2mm of healthy brain tissue, and it is 10-15% likely that I will have a permanent neurological deficit by the time the surgery is done and potentially long postoperative recovery.  He would be willing to operate and the choice is mine whether I can live with this thing in my head, but it is not a good amount of risk to take.

Because of the location of my angioma, even when they do normal mapping of the brain tissue to figure out what to cut through to gain access, there is much risk since the location is close to things like:
  •  Sympathetic system, vagus nerve
  •  hypoglossal, nerve for tongue
  •  cranial nerve
  •  sensory nerves
  •  motor tracts
Is this the same thing as saying its inoperable?  No!  But its an assessment of risk, and not a good one.

The recommended approach is to wait for another bleed, hope that the new one ruptures past the healthy brain tissue so there is direct access.  So we go into conservative management mode...

Saturday, February 5, 2011

Outage - In my brain

I am dealing with a systems outage at work today.  Its important and complicated work unraveling a series of events that result in the death of certain machines and tank other parts of the cluster and service with it.

One thing I am feeling while I am doing this is that my head feels like its exploding while I am dealing with this crush of stress.  Its very odd working through this new haze that has come from my bleed a month ago.   

My system reacts very differently to stress now and when the crush is on there is a particular haze I have to cut through to successfully deal with the situation.  Knowing that I have some kind of bomb that went off in my brain does not help things, but this is a physical reaction to stress that my brain and body overall is having.

Wednesday, February 2, 2011

Post Diagnosis - Mad Scramble

The next 10 days are a mad scramble!

1st is to find out about this condition.  There is not much information out there that is readily accessible.

One excellent resource is the Angioma Alliance, and there is much here about the condition itself for those newly diagnosed, community forums, newsletter, etc.  I would highly recommend to start here for understanding the condition!  My father who is a doctor helped acquire some excellent medical literature and the one that most stood out in understanding the condition in depth is this paper:

Brainstem cavernous malformations: anatomical, clinical,and surgical considerations

Through my reading and analysis it seems that having a cavernous malformation (aka cavernous angioma) in the brainstem with a recent bleed / hemorrhage (or ICH intracranial hemorrhage) is bad news with a annual re-hemorrhage rate of 20-30% at least initially.  This is pretty scary.  But its not clear what this means, whether it applies to my condition and so on.

Further apparently if there is surgery to act on there is apparently a window of time after a bleed where the surgery is better performed during and as it has been over a month since the initial event.  Thus I am in a rush to get to the neurosurgeon that can make this call...

I have been trying to identify the best neurosurgeon to treat this condition.  My father suggests as this condition is more rare it may be worth flying to the best to get the treatment that is necessary even if they are located elsewhere in the country.  I initially get a referral to the UCSF neurosurgery department as having the best expertise for this type of condition in the San Francisco Bay Area.  Getting the referral expedited and cutting through the red tape to get through their neurological center is an initial challenge as they want the initial referral to work up before surgical consult.  I nevertheless get the appointment with the neurosurgeon and its scheduled for Feb 10th.  My father will be flying up to join me, and his support has been incredible through this scary process.

Going parallel on this, I contact the author of the above paper to discuss my situation further and offer to send my MRI scans for review.  The author confirms that the neurosurgeon that I am scheduled to meet with is one of the best in the nation!  I feel pretty blessed to have access to some of the best medical care out there.  I also begin reaching out to the UCLA neurosurgery center for patient pre-screening but there is a lot of paperwork here to get through and this will take some time.

My meeting with the neurosurgeon is tomorrow!

Tuesday, February 1, 2011

MRI - Rebel Hideout Discovered

Well its official.  I have a cavernous malformation in my brain :(  The radiologist comes back with these findings after reviewing the MRI:
1.0 x 0.4 x 0.9 cm focal lesion in the anterior aspect of the 
medulla most consistent with cavernous angioma.

Here is the picture of my brain that shows this little darling planted in the medulla of my brainstem.

Cavernous malformation in brainstem as seen on MRI taken with contrast, side view

As the neurologist discussed with me later, "Its not that big, its just in the wrong location."  The brain stem controls the vital functioning of the human body.

Friday, January 28, 2011

One Month Anniversary - Appt with Neurologist

I have an appointment with a neurologist at Palo Alto Medical Foundation.   I don't have a referral and get the appointment pretty quickly a few days before.

My lingering symptoms of my bleed a month ago are some numbness in my left foot and a disorientation like vertigo when I jump and run.  Its like my body cannot keep up with me when I move in terms of where it thinks I am.

Its pretty puzzling to the neurologist, I generally check out, and I get the MRI.  Having my father being a doctor recommending this helps.  I am pretty aggressive about getting this quickly as I have to make a go/no-go decision in the next few days about cutting over to my new employer's insurance plan.  As an aside I have been a consultant for this startup, not a full time employee.  Full time employment formerly starts in February when it comes to benefits though I have been hitting full time hours as a consultant.

I get the MRI the same day even though my case is tagged non-urgent.   God bless America, where private insurance can you get the best of care quickly!

I am pretty sure that the MRI is ordered without contrast as its a routine MRI.  However in the middle of it, the technician injects me with contrast.  I chat them up, asking whether this is typical and am only told "they saw something they want to get a better look at".   Great I'm thinking.

Saturday, January 15, 2011

Day 16-18 - Trip to Los Angeles

Been looking forward to visiting my family down in Los Angeles after the holidays.  I am still somewhat numb, but well enough to drive some but my wife and I share this duty.  I even manage a little ice skating with the kids (ice needs to be artificial in LA, its an indoor ice-skating rink).

Discussing my condition with my dad, he presses upon me and reiterates that this sounds like some kind of stroke.  The numbness simply does not add up to anything that can be reasonably explained. But I'm 35!  I need to go see a neurologist and get an MRI ordered right away.  He is willing to take me in immediately but I suggest that I can handle it when I get back home.

Before we leave L.A. we have chocolate cupcakes at my mom's house.

Monday, January 10, 2011

Day 13 - Still Cannot Drive

Still recovering.  I try to get on the road to drive into work in SF an hour away.  I can almost manage it but when I turn my head too quickly I get a twinge of vertigo.  I make the call after a few minutes to abort and go back home, its just not safe.

Sunday, January 2, 2011

Day 5 - Working - Not Driving

Did I mention that while all this is going on, dealing with the after effects of my small brain hemorrhage, I am still working?  At least I have been on call to keep systems alive.  This is what I write to my colleagues that are expecting me to show up for the usual Monday meeting:

I will not be coming on site tomorrow but should be dialing in fine
for at least all hands if not scrum also.

I have a nice case of Vertigo, acquired likely as a decent bout of
altitude sickness (never heard of this until having it!).  Anyway operating
heavy machinery now out of the question, but can still be minimally
productive with being on calls, on-call, etc.  Expecting to improve as week
goes on and today much better than yesterday.

So I could sit at a computer.  That's good at least.  But drive a car?  Forgetaboutit.  Fortunately the anti-nausea medication seemed to be helping and after a couple of days I no longer needed to be taking it to seem halfway normal.  The numbness is fading.

Saturday, January 1, 2011

Day 4 - New Year's Day - I am Toast

New Year's Day comes.  I am sick.  The room is spinning. I vomit in the bath room time and again.  I am numb on some parts of the left side of my body.  Its worst when I lie down.  Resting while sitting up does not seem to hurt so much.

At least the kids are out building a snowman
But its vacation dammit, and the kids have to go out in the snow to make a snow man.  Fortunately my friend is coming over with his son (our sons are best friends) and they make a snowman and my wife and he have the kids sled down the hill.  I am obviously not able to participate.  This sucks.  I am not as bad as earlier in the morning, but I dare not walk around.

Mean while I am holding our 6 mo. old since someone has to watch him.  Its a painful sacrifice.  I'm terribly nauseous, each minute that passes drags excruciatingly by, and I'm counting the seconds at times.

But WTF is happening to me?  A bad flu I speculate.  Some bizarre case of altitude sickness with a case of vertigo?  The problem is that this new numbness I have on my scalp, back, left side of my body does not add up.

At this point I think the mountain is doing me in.  We pack up somehow, I even load some things in the car.  Its brutal and I cannot quite handle walking let alone moving bags and suit cases into the car but I do it anyway.

 I call up my father who is a doctor, and while he urges me to stay put I insist on getting off the mountain.  He orders me anti-nausea medication at the local pharmacy and we pick it up while driving out of Tahoe.  If it were not for the medication I would not be able to suffer the ride down the hill with my wife at the wheel.  I am passed out most of the time, its too painful to be coherent, and thankfully the anti-nausea medication has a bonus of making me drowsy.

We make it home.