How Far We've Come

It is bittersweet to put our place in San Francisco on the market.  We landed here feeling things were pretty dire and that we needed to find a place where we could all recover.  To put things in context, in the first ten months after my diagnosis, we moved five times, completed six trans-Pacific flights, and three hospitalizations.  We were all wiped out - physically, emotionally, and spiritually.  We needed a refuge and our small apartment here truly provided it.  The three of us also did a lot of growing in this space which the markings on Walt's closet show.

Breathing Room

Walt running while we are enjoying the spring weather,  having a BBQ at Chrissy Field 

Running wild - wait a minute, did he just bust out of Alcatraz?

The last few weeks have been full to brimming with both stress and fulfillment.  I will go right to the heart of it;  I had my MRI and appointment with my neuro-oncologist on Wednesday and it was continued good news.  I must say again, my tumor is not gone but my doctor said that it is the "best" it has ever looked in the two and a half years that she has been treating me.  The radiation can continue to work slowly, long after the treatment is finished, and that is what seems to be happening.  I'm also on the seventh cycle of my second round of chemotherapy and so far, I'm still tolerating it well.  It is very exciting and more than I could have hoped for.  My brain has a little more breathing room in my skull and I can feel the difference.

Equinox/Spring

I'm a week late for an equinox post - but spring is just hitting it's stride in Northern California.  Everything about our spring feels right, deep down into my bones.  A rebirth.  Easter, the flowers exploding, a new baseball season - the whole world is reset, rejuvenated, and reborn.  Can I tap into some of this?  I hope so....

Preparation

Walt having breakfast at the VA after walking mommy to work

I haven't checked in since my last MRI - all good news and we are doing well.  At this point in time, with an extensive grade three tumor in both hemispheres of my brain ... no news is good news and my last last MRI brought no news.  Chemo cycle 2.5 is in the books and I'm not much worse for the wear.  It is starting to seem like returning to D.C. is a good possibility but after talking with my doctor, I'd like to give it 2 more cycles before we decide.  However, does it seem tantalizing close and we are all excited.  I have been challenging myself more and I've found that my body has been up for the challenge.  I'm still trying to practice patience on a daily basis with about a 75% success rate.

Shedding

Trading portraits with Walt on the walk home from school

"The wilderness had patted him on the head, and behold, it was like a ball - an ivory ball; it had caressed him and - lo!- he had withered; it had taken him, loved him, embraced him, got into his veins, consumed his flesh, and sealed his soul to its own by the inconceivable ceremonies...."
No, I'm not headed up river but I can't help thinking about The Heart of Darkness whenever I see a reflection of myself.  It's odd but I'm pretty sure my brain made these leaps before it was radiated.  It is a daily reminder that cancer has reached out and altered me even on the days when it is far from my conscious mind and I'm feeling great.
I appreciate that everyone seems to think that the Professor Xavier look agrees with me but I must admit that for me it is a sign that the cancer patted me on the head.  Maybe it is a helpful prompt to keep my attention in the present and not waste any of this time.

Is it wrong to follow this quotation with - hey, I'm still feeling well?  Actually, I am feeling great.

Puppies and Rainbows

It's been over two months since my last post which caused some friends and colleagues concern.  Sorry about that.  My body and spirit are slowly recovering from the combo of surgery, radiation, and chemo.  I am still improving - honestly, I'm feeling better right now than at any time post-diagnosis.

Qualified Good News Part Two

Trying to take the long view - walking on Roman tiles near the Sea of Galilee

It has been quite awhile since I've managed to write anything.  I've sat down dozens of times to chronicle what has been going on and I'm not happy with what I've written.  I realize that this may cause the people that care about me to assume the worst while the opposite is in fact the case.

Pool/Drop

The Crying of Lot 107081

I'm four days clear of my last radiation treatment and I'm feeling great both physically and mentally.  I wasn't quite sure how it was going to be emerging from the basement at UCSF after radiation session number thirty but I felt instantly revived and awakened.  I left with my mask as a party favor in a grocery bag and it felt like a feather rather than a prison as I carried it home with me.  A friend had suggested to me before I began that most patients either want to transform their mask into a piece of art or back over it with their car.  I initially identified with the latter group but now that's not the case.  I don't want to destroy and I don't want to transform it.  It stands for itself.
I figure with the initial fitting, the treatments and scans, and the occasional delays, I probably spent in the neighborhood of fourteen hours locked into this thing.  When I look at it now I think of perseverance rather than misery, patience rather than suffering, and hope rather than fear.

Mourning

It has been a long week.  I've reached the end of my radiation treatment - just one more session tomorrow morning and I'm done - but I don't feel particularly celebratory or relieved.  The past week has left me in a deep state of mourning and reflection.

Grace

I have greatly appreciated all of the thoughtful words from around the world in the past two years.  I truly consider myself lucky to have friends, family, and colleagues thinking of me, pulling for  my health and for our family to weather this storm.  Somedays, I believe it has been these thoughts and prayers that have helped buoy me when I've been flagging.  Everyday, it has been innumerable graces, large and small, that have carried me along.

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.

14 Days Done

Home sweet home for the next sixteen days

I've almost reached the halfway point in my radiation treatment.  I am happy to report the second and third weeks have gone significantly better than the first.  There are side effects - I look like a Bavarian Bürger who cooked a bit too long on Mallorcan beaches and my hair has indeed started to fall out in disquieting clumps - but overall, I'm doing well.

Welcome To The Dungeon

Workers had only recently taken down the "Abandon all hope,  ye who enter here," warning and put up the only slightly more uplifting "Radiation Oncology" sign.

Six down only twenty-four more to go.  I started radiation last week and I must acknowledge, it is one of the few things I've encountered that lives up to, or even exceeds, the hype.  Which is to say - it is pretty miserable.

Dropping In

Walt has a serious meta streak - taking a photo of a photo - scouting the right run of Lava Falls at 30,000 CFS - the cheese grater is barely visible on the right - with Wolfe and Timmons (I'm in the comfortable catcher's crouch third from the left) circa 1996.  Had a great run (thanks Mike) and a good time was had by all.  Another boat on the far left is being smart and running left.  Where is the fun in that?  In case this one slipped by you, just click on the image to make it much more visible.

I'm feeling a bit antsy and over adrenalized these past few days.  My emotions are running all over the map.  I apologize for the spotty responses that I have sent out to all of the well wishes and kind messages I've received.  Focus remains at a premium and when I've felt it, I've tried to spend it on Walt and Steph and calming my own unsettled mind.

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.

Changes

It's been a rather full two weeks - I had brain surgery, spent two days in the hospital, came home with twenty-three staples in my head, and got a new diagnosis.

Apple's Greens

When I picked Walt up from pre-school yesterday, he was very excited to show me the two new Curious George books he had in his cubby.  "Where did you get these kiddo? "  He explained that the teacher took us to "Apple's Greens" to look at books and he picked out the George books.  "It's not like the library Daddy.  I can keep these for ever and ever and ever."
This made my day or perhaps even my week or month.  I'm not sure if this is nature or nurture but I do feel satisfied that Walt has his priorities in place.

Actually, It Is Brain Surgery

I am now scheduled to have surgery in one week.  Is it possible for such a thing to be a pleasant surprise?  I have been living for almost two years under the impression that I would never be a candidate for further surgery because of the diffuse nature of my cancer.  So I am truly glad that this is not the case but after purging even the possibility of more surgery from my consciousness for so long, I'm once again trying to adjust to a new reality. 

Longest Day

Looking north from the roof

Happy summer solstice or winter solstice for friends in the Southern Hemisphere.  We're basking in clear San Francisco skies (a bit unusual for the season) for the longest day of sunlight for the year.  I'm afraid the day does feel acutely long since I've been up before first light and I doubt I will close my eyes until well after night has fallen.  I am feeling quite preoccupied.  Tomorrow morning we will meet with the surgeon and discuss the most prudent and promising ways to slice portions out of my brain for removal.  I'm not sure if I'm going to get just a detailing (biopsy) or a major remodel (debulking) but either way, we're both anxious and looking forward to meeting with the surgeon tomorrow so that we can finally have some of these questions answered.

One Step

 It has been a very compressed couple of days.  Time slowed down a bit as I waited to hear the conclusions of the tumor board and get the call from my doctor.  Yet I have to say, it was very different from Wednesday.  The shock was gone and I just wanted some information that would help me focus on the next step - what can we do next and when will we do it?

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.

Eclipses & Ellipses...

It has been a very long time since I posted anything - and that can either be positive or negative - or a bit of both which is, in fact, the case.

Commonweal

It's hard to believe it's been four months since I attended the Commonweal Cancer Help Program for a week in Bolinas just south of Point Reyes.  I stayed at Pacific House above and spent hours walking and sitting on this bluff over looking the ocean.  The wild irises are blooming all over the bluffs now in late March.  I came home from my retreat in December having learned so much - I had a burning desire to write about the experience which I now view as a turning point in how I understood my cancer.  Unfortunately, I also left Commonweal with a raging infection in my teeth, that was probably related to the chemo or steroids or both.  In any case, I was in pretty rough shape for the next two months and I lost the drive to work on much of anything.  I was only able to share my thoughts on the week with Steph in bits and pieces.

Second Opinion, Third Opinion

It might seem strange that we've made it this far into treatment without ever seeking a second opinion.  I guess I did have an initial opinion when I was first diagnosed in Australia but I would hardly count that.  No, the entire time we have relied exclusively on the viewpoints of my doctors at UCSF.  (Along with our own research and desires of course.)  I feel very fortunate since it is one of the finest hospitals in the country for treating brain cancer.  On top of that, whenever I see my doctor she presents my case to the "tumor board" made up of all the neuro-oncologists, neurosurgeons, radiation oncologists - everyone in the department with potential insights - so that I benefit from their views as well.  These folks might walk right by me on the street on the street but if I happened to be holding my brain MRI - they'd say,"Hey, I know you....

The point is, I don't feel underserved by UCSF.  I feel confident in the care I've received and the treatment plan that I've pursued.  Still, we've come to another crossroads in my treatment.  I'm off chemotherapy (I can go back on if there is a turn for the worse) and I still would rather defer whole brain radiation as long as possible - so what to do?

Slouching Towards 2012

It's been quite awhile since I have written and it is not for lack of material.  The last month has been filled to overflowing with things I want to write about - participating in the Commonweal Cancer Help program,
having my three month MRI (no change),  getting a second and third opinion at Stanford and MD Anderson - but honestly my month has been dominated by one mundane, prosaic thing which has prevented me from writing - a bad tooth.

Thanksgiving/Advent

Thanksgiving 1971, I'm on my mom's lap in the middle-right of the picture sporting a red that I haven't worn since

With my grandfather at the same Thanksgiving

Thanksgiving has always been my favorite holiday. While it has slowly morphed and been perverted into the day before black Friday (aptly named even if it lacked irony), I've always thought of Thanksgiving as the most incorruptible celebration. It feels like a religious  observance but it is as secular  and universal as we can get in America - gather with friends and family, eat, and be consciously appreciative of the good things in your life.

Brainstorm

I woke up two mornings ago to the amazing sight of a fast moving rainstorm rolling toward us from the Pacific about a mile away.  The gorgeous but somewhat eerie light lasted only a few fleeting minutes but signaled that things were about to radically change.  A pounding rain lashed our building minutes later.  It rained most of the morning and then it passed.

Glass of Dirt

This has become part of my daily ritual (a twice daily ritual actually), drinking my "glass of dirt" as Walt has dubbed it.  It is part of the Traditional Chinese Medicine treatment which has been an important tool in my cancer fight.

If you are wondering, it looks like dirt and it tastes like dirt so Walt is a pretty astute observer.

Handshakes

Last week, the friends and colleagues I entered the Foreign Service with (the 133rd class of A-100 "Standing and Clapping") hit another milestone on the road of a State Department career as "handshakes" went out for everyone's third assignment.

The first milestone, in my opinion, is the opening day on A-100 when we all collectively and without much pomp and circumstance (standing in the lobby of FSI) swore an oath to uphold and defend the Constitution.

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.

Noyo

I had the chance to take Walt to possibly my favorite place on earth recently - Camp Noyo - a former logging camp in the redwoods of Mendocino County which became a boy scout camp in the early 1930's.  Our family has been coming there for, after Walt's visit with his cousins, five generations now.  We didn't do much traveling as a family growing up (perhaps that's why the travel bug bit me so badly when it did) but we did drive up to Noyo and spend a few days on a fairly regular basis.  Our times there as a family are some of the happiest that I can recall - when it was clear the we all felt content and at home.  It was fun to see Walt's joy in experiencing it all for the first time.

Captain America vs The Hulk

I know this post is a little late as it has been a week since Captain America roamed the Avenues very politely  asking, "Trick or treat?"  Walt quickly surmised that wishing strangers "Happy Halloween" was also the way to go.  We had a fun night and I'm happy to say that all of the pleasure was going door to door, seeing the costumes and decorations (Walt generously wished a stick figure on a lawn,"Goodnight skeleton!") and filling the bag - actually eating the candy he is less interested in.  It was satisfying to watch the light go on and see him "get it" and throw himself into the weird fun of the day versus the bewildered and oddly serene Incredible Hulk that he was as a six month old in Moscow.

Pretty Good, Not Bad, I Can't Complain

All things considered, our participation in the Silicon Valley Brain Tumor Ride was a big success.  As I wrote last week, I've been a bit foggy and lacking in energy since tapering down on dexamethasone a couple of weeks ago, so I had my doubts about having enough in the tank for a fifty-mile ride (kind of embarrassing since we used to ride 75 to 100 miles a day without giving it a second thought).  Happily, I felt great and even had enough for some unplanned detours - a combination of poor signage on the route and generally being unfamiliar with the  Peninsula - when all was said and done, I probably rode closer to 60 or 65 miles (including a few at the finish that I could have done without).

Swimming in Molasses

While I have written about this in the past, I am back to the same place so here we go again...I am tapering down to a lower dose of the steroid Decadron (wasn't he a Transformer?).  I am very, very happy to be doing this and I can't wait (actually, I can wait.  I will taper very slowly so my endocrine system doesn't go completely haywire) but it is leaving me feeling like I'm waking-up from a ten-year nap.  I'm sluggish, fuzzy, and living in slow motion.  It will pass but right now it makes getting through the day a challenge.

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.

Brain Tumor Ride

No, we are not going to use Walt as child labor during the Brain Tumor Ride in Palo Alto (I'm not sure if he is up for 50 miles but I know he would give it a go).
We've been looking for a way to become more personally involved in raising money and awareness of brain cancer and the Brain Tumor Ride in October seemed like the perfect way for us to do that.  The National Brain Tumor Society is an excellent organization and has been a great resource for both of us over the past year.

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.

Round 11

I've just finished my eleventh round of chemotherapy and, unsurprisingly, it has begun to take its toll.  I guess when you reach the 11th round of anything (a heavyweight prizefight, your turn to buy a round for the eleventh time), it is time to think about packing it in and going home for a rest.  I'm almost there.  When I swallow these seven capsules of poison for five days every month, I think - just attack the cancer.

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.

Headed Home

We finished the pack out this week and watched as our things pulled away in wooden crates down the quiet streets of Franklin, our suburb in Canberra.  For the first time Walt helped pick out what would go in his suitcase, the air freight and on the ship.  He was a trooper and although my patience was tested more than once I do think his being part of the action has made it easier on him that we are doing this again so soon.