32nd post. Carpool Karaoke

Because of my seizure 9 days post surgery, I am still unable to drive.  It is only June.  I have to drive to Northgate (6 miles from my house) to get to the SCCA Proton Center.  I would have gone alone each day if I was able.  But I wasn’t.  I had to be driven there and I was always the first adult brain patient…so my time was around 9:20am…meaning driving in traffic to get there.  It was about 25-30 minutes there, and 15 minutes back.  But it was well over an hour to one and a half hour commitment on the part of my friends who drove me.  Who kept asking if they could drive me the next day, the next week, the next anytime.  Again I sound like a broken record, but I had more drivers than I had days of radiation.  Who has that?

And before I continue I want to say something about what I said above.  That I would have gone alone each day if I was able.  I would have.  I know this seems completely incompatible with the fact Will and I have decided to be so transparent and public about everything.  I mean, I am writing a blog.  A complete stranger can read this.  But it is important to understand.

I don’t like to be the one getting attention.  I like to GIVE attention.  I like to give.  I feel better giving than receiving.  If this year has taught me anything, it is how to surrender and to realize that I am not alone in preferring to be the giver vs the receiver.  It has taken 51 years to get to this truth.

I am also optimistically pragmatic.  I am not a flat out optimist like most think.  I am grounded in reality, in the practicalities of life.  Drama for drama sake freaks me out, repels me, bores me.  Being a worrier or Debbie Downer also bothers me, I am not that person. I know this to my core. The reality is, even if I wanted to go alone (I did want this often)…surrender to the tranquility of the proton center and just be alone in my thoughts and perhaps contemplate more than I ever did when I was there, what exactly was going on, that wasn’t an option.

So the lesson for me, for my life, is that as someone who has been receiving, since the moment we found out, from my amazing family and every one of you, my friends from SF, NYC, of course CHICAGO and Seattle…, the only thing I could give you, was allowing myself to receive.  Allowing you to give.

So, if i am going to give, then I am going 100%…lets make it fun, educational, intimate and wonderful.  My giving, was in receiving.  So let’s just demystify the whole darn thing…and we did.

Will and I decided that seeing the actual room, being able to participate in watching me get up on the table and then having my friends see the mask, touch the mask, meet Clif, and even snapping me in – helped.  Not being able to visualize what it really looked like only made friends and family more fearful and worried.  I think everyone feels better seeing something first hand.  It makes more sense.  The unknown becomes just a little less, well, unknown.

So, for six weeks it was like carpool karaoke.  Small groups of friends came together with me.  We would catch up on the ride over, they could come with me into the back, into my radiation room and see everything first hand.  Clif was very funny.  Each day he would say to my guests “oh you are the friend who is going to do the radiation today for Beth!  That is so nice of you!”.  It always got a laugh.  Then my friends would go back to the waiting area, which by the way, looked like a beautiful mountain lodge or spa.  Massive ceilings, all glass looking out at huge mature trees that only Seattle could have in the middle of an office park, a fire going with comfortable couches surrounding it, coffee, tea, la croix waters…books galore, puzzles.  It is a remarkable place.  If you live in Seattle and have never been, you should go.  We should all thank the University of Washington and the SCCA.  It is truly a remarkable place.  There is no BIO HAZARD or RADIATION signs on sterile doors in sterile hallways.  You are not underground as if what goes on there is really bad and menacing.  It is extra wide lovely hallways with beautiful art and then stunningly clean state of the art treatment rooms.

Each time when you were escorted back out to the waiting room I had smiling supportive faces giving me a hug and ready to hear about how I felt.  I always felt great.  Always.  The radiation didn’t hit me until hours later, when you would feel like a tranquilizer gun just got you…and all you wanted to do was go to sleep.

I am not even going to attempt to name everyone who came and helped me.  All I know is there were no less than 80 individual friends and family members who came with me. The Proton Center had never seen anyone bring this many friends.  Clif would say after treatment and before escorting me back out to the waiting room “so who is coming to coffee clutch tomorrow?”…and I would give him a little low down on each friend and how awesome they were.

Even the other patients started to notice after about two weeks that really I was bringing new people virtually every day.  Sure many came more than once, but always with a new person joining us.  Oddly, it was a wonderful summer for me because who gets the opportunity to spend 1-1.5 hours each day with some of your favorite people in the world?  It was great.

I met with my radiological oncologist every Friday…so my friends that came that day all got to meet Dr. Rockhill.  He is a wonderful man.  My friends that came on Wednesday got to come with me to the phlobotomy lab where I did weekly blood draws. But Starbucks was one floor below so we would grab our coffee and again, visit until my number was called.

It was my social hour, or two.  I loved that.

However, two weeks in I did start to think “are they actually doing this right?  Nothing is happening?”.

I had been told (My husband can tell the story much better than I can) by my radiological oncologist with complete certainty, that I would lose my hair about 2.5 weeks in, and that the hair loss was permanent.

WHAT!!!

Okay, I have been a really good sport thus far.  I was fine with being told I had a brain tumor, had to have a craniotomy, only to be told it is actual brain cancer.  I had been through one brutal ridiculous second opinion, got a third opinion that only confirmed what I would have done regardless – which was stay with the University of Washington.  I signed on for 6 weeks of radiating my brain while taking chemo at the same time, and agreeing to do ideally 12 rounds of adjuvent chemo afterwards.  It was a full year of my life…and I did not complain once.  As a matter of fact, I sort of handled it really well, with humor and grace.  Knowing it was serious but not being a drama queen.  I never once threw myself a pity party.  Never once was I upset with my diagnosis.  Never one did I think “why me?”.

Permanent hair loss?  Well, that is unacceptable.  I would rather lose all my hair to chemo and be bald for a year or so as it grew back in.  That I could handle.  But I can not handle being bald ON THE CENTER OF MY HEAD.  As in, put your hand directly on top of your head right up against your hair line.  That would ALL BE GONE FOREVER.

There was not enough tequila or wine in the world to make me get over this one.  Ever.

Dr. Rockhill was not budging. It was the first time in 2.5 months that I actually contemplated not going through with the treatment.

It is not what you are thinking.  It was not vanity that drove me.  It wasn’t.  It was the forever part.  FOREVER I will have to wear a hat.  Forever I will have to wear a scarf on my head, a bandana, a something, a fascinator…yes that was suggested to me….are you kidding me?  If I had a dime for each person who said “oh this is so chic or this is so in vogue right now…”  but forever?  I mean really.  Who wants that.  It is a constant reminder.  You are a human billboard “yes, I have cancer”.  I know years from now I don’t want people to say “oh yes, Beth has cancer…see?  She always has to wear something in the center of her head.”

I had cut my hair short before the surgery and saved my real hair in case I went bald so I could have a real hair wig made.  So now, knowing this was going to happen I had to get an appointment at Anton’s in Kirkland.  Kurt, most lovely, kind man ever, was going to make my wig.  Oh the wig sizing and making…now THAT is a funny story.  But I digress.

Where did I leave off?  Oh yes, I am ticked, I am absolutely indignant and I am now acting like a spoiled child who thinks if she can really tell the doctor it is not allowed to happen, that it just might work.  My husband sat there…hand on my leg, looked at the doctor and said something like “I’ve been waiting longer than you would think, for Beth to finally have a breakdown about all of this”.  He then added, “in her defense, she really did have awesome hair”.