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.

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.

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.

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.

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?

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.  

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.

The Osher Center for Integrative Medicine

One of the most amazing aspects of receiving treatment at UCSF is that not only do we have some of the best oncologists in the world, we have the possibility of getting holistic, clinical care as part of the same medical system.  Rather than having to seek out treatments outside of the usual health care systems, UCSF offers integrative medicine under the umbrella of the rest of your care.  This also means that the practitioners can access your medical history and contact your other doctors as colleagues.  A few months ago, I wouldn't have appreciated what a profoundly revolutionary idea this is.

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.