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?