Another Turn

If you don't know San Francisco, UCSF is the large complex at the foot of Sutro Tower

We woke up Sunday morning to find the fog lifted and the glorious Bay Area fall had begun.  The scent in the air is different, the light is transformed, and one has the unmistakeable sense that a new season has arrived.  It drives me nuts when I hear the refrain,"I like California but I wouldn't want to live somewhere without seasons."  A day like Sunday is as distinct and dramatic to me as the explosion of color in a New England hardwood forrest.  You just need to adjust the sensitivity of your perception.  The signs are subtle but the difference is rich and varied.
This is somewhat analogous to how attuned you can become to subtle shifts in your body.  Doctors are pretty frank about the fact that the MRI is an imperfect tool; a remarkable one but a window into the brain that lacks fine sensitivity.  I could feel the change in my cancer before it showed up on a scan.  
The good news from here is that after nearly a month of radiation, I'm feeling much stronger than when I started which has confounded my expectations in an entirely positive way.

Im Westen nichts Neues

Dr. Walter is also adapting to the new UCSF data entry system

This post may be a bit scattered as I feel unable to marshal much focus to write.  I'm feeling drained.  After feeling strong for the two weeks since surgery, I came crashing down yesterday with a splitting headache and nausea that kept me horizontal until six in the evening. This is pretty normal post-surgery but it is still unpleasant and disheartening since I felt like I was clear of these symptoms.  I'm feeling better today but still fighting some queasiness.

Change is good, right?

Walt's backseat perspective heading home

Today was the day for my three month MRI and visit with my doctor.  It's not good news.  There is new growth and my tumor has changed.  This is what brain tumors do - they don't stay stagnant for very long.  The grow, change, evolve, mutate.  It is hard to know what exactly has happened but we will be facing some hard decisions soon.

Feeling Funny

I have to quote the late 70's genius of Steve Martin again (and it probably won't be the last time.)

"You know, a lot of people come to me and they say Steve, how can you be so f*****' funny?  There's a secret to it, it's no big deal, I'll be honest with you - before I come out, I put a slice of baloney in each one of my shoes.   So, when I'm on stage, I feel funny."

This is where I've been for a few weeks now - feeling funny - but laughs are hard to come-by.

Summit Leads To Эпоха застоя

It was Always Sunny In Philadelphia until the last day of the conference and the 5K which is why Steph appears to be frozen in this shot.

We spent last weekend at the National Brain Tumor Society Summit in Philadelphia.  It is the annual meeting of the NBTS - part scientific conference part networking opportunity for patients (or "survivors" in their lingo) and caregivers.  We did learn a few things and connected with some very nice people but I left feeling dissatisfied - my perspective hasn't improved significantly but it hasn't gotten worse either.  Stagnation.
I'm not sure what I expected, certainly not a miracle cure that had somehow eluded me before, but I wanted something - some kernel of hope, some promising procedure that I hadn't come across yet - and unfortunately, that simply doesn't appear to be out there.

Happy Anniversary

It is hard to believe that it has been a year since we snapped this picture in front of our house in Canberra before we hopped in a rented car (our hastily packed nine suitcases somehow crammed in there) and headed for Sydney and home.  Looking back, I now realize what a complete altered state I was living in for the next six weeks.  Brain cancer, brain surgery, chemotherapy - the kind of words that make you do a double take - is this real?  Did I hear that correctly?  I was fortunate enough to have never had a serious illness in my life and so nothing compelled me to think about it too much.

Fierce Ambivalence

"But Roseman had also spent a sleepless night, brooding over the Perry Mason television show the evening before, which his wife was fond of but toward which Roseman cherished a fierce ambivalence, wanting at once to be a successful trial lawyer like Perry Mason and, since this was impossible, to destroy Perry Mason by undermining him."
Thomas Pynchon The Crying of Lot 49
I had my MRI yesterday and saw my neuro-oncologist.  After standing for over an hour on a combo of MUNI buses headed to China Basin (hacking fellow passengers everywhere - anyone seen Contagion yet?), I arrived late for my MRI.  They pushed me back forty minutes but were able to get me in.

All Cancers Are Not Created Equal

Last week, I found myself with some time to kill at the Hellen Diller Comprehensive Cancer Center at UCSF's Mt. Zion Campus.  It is one of 39 centers around the country specially designated by the National Cancer Institute as institution that provides "laboratory, clinical, and population-based research, with substantial transdisciplinary research that bridges these scientific areas."  This is essentially where you want to be if you need cancer treatment in the United States.  

Devouring or Devoured?

I thought it was time to rename the blog.  Keeping Up with Chris, Steph, and Walt Van Bebber has done the job admirably since we started this last January when simple and literal seemed appropriate.  Getting overly  precious about what we called it just didn't feel right at the time.  But recently it's just seemed a bit too bland and descriptive - like a folder we have in the file cabinet labeled "Taxes 2006" or "Moscow Receipts."
I found out not too long ago that one of my oldest friends called me the "Devouring Mind" in high school I think mostly because I was curious about and interested in everything and I just had a burning desire to know and discover things.

Hooray for a home!!

We've been reluctant to write since we left Canberra.  It has been a different transition.  And although we should be used to moving this has been a harder move than we've had in the last few years.  We've been staying with family and friends, we've traveled and we unfortunately even had a few days in the hospital (Chris coming down with pneumonia in Canada). But mostly, we've been superstitious, not wanting to share our news until it was for real.  After talking about buying a home in San Francisco since we first lived here we finally did it.

Strikes and Gutters...

...up and downs.   This pretty much describes our last few weeks.  Three weeks ago, I made the long, and this time, stressful trip back to San Francisco for my regular two-month MRI and appointment with my neuro-oncologist  Casey made the trip down from Idaho to see me and go to the appointment with me since Steph remained in Canberra with Walt.  The news was good - stable, no new growth perhaps a slight improvement.  I was so exhausted from the trip and stress, it was hard to enjoy much about being home.

7 months

Chris just returned from San Francisco. A crazy, short dash to get his MRI done and the next two rounds of Temodar in hand.  Despite a lot of trepidation going into the trip, the news was once again a great relief: stable disease to possible response.  After two sessions at the Osher Center and a great visit to Dr. Chang we were fully satisfied that all the subtle symptoms that seemed to be creeping into our lives were the result of too little rest, many different medications and jumping back into full time work again for the first time in 6 months.

Heading "Home"

It looks like on Sunday the three of us will be boarding a plane bound for Sydney and heading back to our house in Canberra and my job at the Embassy.  The last few days have been a Through The Looking Glass inversion of our last few in Australia.  Fours days ago, it just did not appear to be a realistic possibility that I would be medically cleared to return to Australia.  Now that I've had a few days to process this and let it sink in,  I  couldn't be happier.

Headaches and hiccups

With Walt & Dad on Bennett Ridge

I'm sorry to report that my headaches returned for the first time in almost ten weeks last Sunday.  I was hoping that the alternative therapies that I'm doing along with the apparent effectiveness of the chemotherapy were at the very least, controlling my symptoms.  After a rough night and twelve miserable hours in bed on Sunday, we spoke with the doctor and I went back on my favorite steroid.

Qualified Good News

Is there any other kind when dealing with health (or doctor's pronouncements)?
I had my four-month MRI yesterday and saw my oncologist.  I can say for the record that what began as an hour of torture in the Sci-Fi machine has become old hat.  I found myself drifting off, looking at my reflection in the control room window via a mirror attached to my "Hannibal Lecter goes out for the day" mask, wondering if GE was consciously channeling 2001: A Space Odyssey when they designed this MRI machine.  I used to find the hour of lying immobile in a small, noisy (imagine R2D2 getting slowly crushed in the Death Star's trash compactor) metal cylinder was an unpleasant experience that required visualizations (trying to recall the run in Hance in every detail) to endure but honestly, it doesn't seem like a very big deal anymore.  

Treatment

We discussed our treatment options with our doctor - we could simply monitor the tumor with regular MRIs and hope that it is in fact a very slow growing cancer and discuss treatment when the tumor showed change.  It is a strange thought that I may have been carrying this cancer in my brain for a very long time without showing any ill effects.  We will never know this.  The doctor thought this wasn't the best option in our case and this made sense to us given that I had started to show some symptoms.

Diagnosis

Pre-surgery haircut - I only needed a small patch shaved

The day after my MRI, I saw a GP in Canberra who sent me to see a neurologist. While ruling out a diagnosis strictly from a scan, it appeared that my "migraines" were being caused by a brain tumor.

After talking with the doctor, we decided to return to the U.S., specifically to the University of California, San Francisco Medical Center (UCSF), for further evaluation and treatment.

The next few days were a bit of a blur. Colleagues at the Embassy could not have been more helpful and supportive and by some minor miracle, thirty-six hours later, we were boarding our San Francisco bound flight in Sydney having spent about an hour packing our bags.

When and how did this all start?

We began noticing that something was up around the time we returned to Washington for training after our posting to Yekaterinburg, Russia in March of 2010. I felt exhausted and could never catch up and feel rested. Given the circumstances - a mid-winter move from the edge of Siberia to a demanding training schedule at the Foreign Service Institute (FSI) in Arlington - it didn't seem too unusual and we just plowed ahead.