26th post Fog City or Bean Town

First thing we do after hearing our news and getting home, was to send out our emails.  Communication was critical.  We had family and friends who have been waiting to hear. Who have been praying and taking time from their day to think about me.  THAT is humbling.  I am so grateful, so amazed by this.  It is amazing the capacity people have, genuinely, to care.  And it wasn’t just my closest family members and friends, it was a whole lot of people in the community – who I don’t see on a daily basis.

Everyone was just so nice, so kind, so concerned and wanting to offer up anyway to help.  To experience this sort of generosity, to witness the very best in people, well, it’s overwhelming.  And they deserved to know the pathology as much as anyone else.  We waited an extra week for pathology to ensure the diagnosis would not/could not change.  I submit it was worth it.  The pathology had changed…during the first four days. I only wish I could explain the science to you, but my doctors could.  They said “it was a very hard diagnosis to get to” but that the tumor board, after three passes, unanimously agreed on what it was.

Brain cancer sounds dramatic.  It is dramatic.  It is life altering and life changing. However, MY brain cancer is not as bad as it could be.  I know this and feel guilty for my good fortune in having a low grade astrocytoma.  They believe it was caught five years earlier than it should have.  To have found this incidentally was/is the miracle.  It is why my prognosis is so good.

So good that perhaps I won’t need to treat it whatsoever.  Careful Wait and Watch was a reasonable choice to make according to our surgeon.  From what he witnessed at the tumor board once pathology was determined and agreed upon they went to treatment.  60/40 split on “treat” vs “wait and watch”.

We didn’t think that would be very fair…how do we decide?

We schedule our appointment to meet with the oncologist and radiological oncologist at the Alvord Brain Tumor Center.

Will and I go to meet with the Chief Oncologist for Brain at U of W.  She is a very nice woman.  She walks in and introduces herself to us.  We think we are going to have a discussion, exchange pleasantries and debate treat vs non-treat with “careful wait and watch”.

So when our doctor started to talk about how she would like to begin chemo and radiation within 30 -40 days max of the craniotomy and then from there move to adjuvant chemo for anywhere from 6-12 months we both looked at each other in disbelief.

Will, speaking for both of us as I believe I was unable, said “you are talking in theory correct?  I believe we were here to speak with you and figure out if we should wait or treat…and that you would help us make that determination.”

The oncologist looked at us and said “this is not theoretical, this is real  and this is what Beth needs to do.  There is no 60/40 split from the tumor board, it was unanimous…we have to treat this and start as quickly as you are able.”

Wow.  I’m just saying we did NOT see this coming.  The truth is however, there wasn’t a chance I was going to do “careful wait and watch”.  Anyone who knows me well knows I can not just sit there and hope…and then four times a year get an MRI and have to TRUST what the radiologist says.  I would only trust my friend Kristin…but I can’t rightly ask her for a second opinion/assessment four times a year for the next five years, than three times a year for two, and than two times a year the rest of my life.  And seriously, that is what I would have to do.  I trust her expertise, her care, the pride she takes in her work.  This gorgeous super fun, brilliant (Graduated NUMBER ONE in her Medical School – I have NEVER known anyone who has done that) is the bomb.  She is awesome.  She would do it too, without hesitation because that is who Kristin is.  But I am not doing it.  Not only to spare Kristin from the work, but because it doesn’t feel right fo me to do nothing.

Next we meet with the radiological oncologist.  He explains that the ONLY reason he is treating me is my age.  I said “I am in good shape and I feel super young”…he agreed.  However he said once you are over 35-40 years of age, you treat.  It’s automatic.  There is no jump ball, you treat.  And I remind him I am 51…and he says “yeah, well, so that is that.  We have to do it.  And I believe Proton Radiation is what you need.”

So despite a 100% agreement with all the powers that be at U of W on treatment plan, and my being secretly relieved yet at the same time feeling like I must be trapped in a nightmare and the awful realization that this is happening …it’s actually happening! I still need to convince my husband this is the right course.  And I need to make sure it is the right course.  I want to DO something, but perhaps there is another route, one perhaps where I could avoid radiating my brain five days a week for a month and a half along with chemo…surely something else is out there with all the medical breakthroughs..right?

We ask the doctors about a second opinion.  Surprisingly they said they highly encouraged it, gave us the list of the best neuro hospitals in the US who dealt with my type of cancer, and said they would be happy to make introductions and send the pre and post surgical MRI ‘s and the notes.

We decided on two.  UCSF and Mass General.  We didn’t want to go to MD Anderson.  Too far with zero support group there.  At least in San Francisco I had a strong contingency of friends from when I lived there in the late 1990’s and early 2000’s.

Boston we had lots of friends and Will’s sister not terribly far away and all of my sisters friends from college.  Boston could work as well.

Fog City or Bean Town…