27th post. ##@**! S.F.

Sunday, May 13, 2018.  Mother’s Day.

Sally has a soccer game at Garfield at 1pm…We go to the game and then friends take Sally home for the afternoon because Will and I are headed to San Francisco.

I am ecstatic.  We don’t go away often just the two of us.  I lived in San Francisco for six years and loved it…and had already booked reservations at my favorite restaurant – Aqua.  Michael Mina, who is the owner and chef, is a very close personal friend of mine.  His wife Diane, is so incredible…there are no words.  She is pure joy and sunshine.  She has the most positive energy of anyone I know…and good heavens that girl knows how to make a bloody mary!

We check into our hotel and are almost giddy.  We walk around the city – and we start to feel a little bit better about our homeless situation in Seattle because San Francisco’s is sooo much worse!  UGH.

We go to dinner at Aqua and order absolutely everything on the menu that Michael is known for.  Caviar parfait, tuna tartare with pine nuts and pear…it goes on and on.  It was so lovely.  We just sat at this gorgeous table talking and laughing and just having the best date night we’ve had in years.  It was awesome! We even joked that this is one of the benefits to what we are going through – we have an excuse to travel to nice places (that happen to be major medical centers) and treat ourselves to great dinners and hotels to make it all seem not so bad.

It was the best Mothers Day evening ever.  We had celebrated with the kids the night prior and then the morning of.  It was perfect, just me and my rock solid husband, about to spend a day at UCSF.  Who knew what they would say…

We arrived UCSF early on Monday morning.  We knew it would be a marathon day.  Three different specialists to meet, with almost an hour in between each appointment.  It is hard to schedule all these people in one day.  I have to say UCSF was wonderful in that regard.  They made it happen so we could not complain we were waiting an hour between each visit.  We started with the Chief of Neurosurgery. Good looking, super impressive, articulate seasoned professional. Cocky. Yet he was charming and lovely and also very direct and straight to the point. He looked at my pre and post MRI’s and said “looks like they got a clean resection – I would not do a thing. I would not radiate and I would not do chemo”.  And that was it.

During the hour we wait for the next appointment Will and I start talking about our game plan and realize it’s too late to change it, but next time we skip the surgeon part of our second opinion.  It is a waste of our time and theirs.  The surgery is already done..why did I schedule that appointment?  The guy is ridiculously busy.  What was I thinking?  But I know what I was thinking.  I was thinking that Neuro Surgeons are rock stars.  They are so brilliant and bold that they dare operate on one of the most critical if not THE most critical part of your body.  They screw up you are dead, or can’t walk, or can’t talk…the list goes on and on  AND. the truth is, we already know that treatment or no treatment…it will be done at U of Washington.  We have unwavering faith in the team we have assembled, my surgeon and both oncologists, and our pathology team who were so dogged in getting the pathology right.  I don’t need to go any place else…I just want to double check.

So after and hour, and learning from our mistake and honing our “how to conduct a second opinion”, we finally go to the area that we need.  Radiological Oncology followed by meeting with an Oncologist.  What is the game plan?  Do they concur with U of W?

We are called in to meet with the Radiological Oncologist first.  He was wonderful and articulate and lovely.  Highly educated –all the school you dream about having your kids go to – check…he has them all.  And he is so thorough and so kind.  This was a whole different level of doctor patient care.  He spent nearly an hour with us using a grease board and a black marker to go over all the areas of the brain, the tumor, location, the genetic mutations found in the path and what they all mean.  I have to say we probably knew about 95% of it…because our team back home was equally thorough and thoughtful.

The 5% we didn’t know about was about to change our lives…put us in full suspension, lock down…death spiral.

As he talked so passionately and convincingly about all that had transpired he all of a sudden said “I would not recommend you radiate the brain.  We need to resect”.  Will and I were holding hands at this point and so I sheepishly said “um…I am so sorry, but I did the resection about one month ago”.  He looked at the two of us and said with not a glint of hesitation, “Yes, the first tumor was removed, I believe they missed the second one.  You have a second astrocytoma and it means you need to have another craniotomy”.

Silence.

More silence.

I knew better than to speak first.  I remember from my days negotiating deals the person who speaks first loses…and now the proverbial poop has just hit the fan.  I have to be right, so I say nothing.  Will says nothing.

He looks at us and says “I assume your doctors at U of W made you aware of this?”

Okay…so here is the thing.  One, inside I am about to die, quite literally, of a broken heart.  Will is squeezing my hand because what he has just told us is beyond devastating.  It also changes my prognosis…and it’s definitely not for the better.  It is bad.  It has changed this from “we can treat this and beat this” to “you need to fight for your life”.  I am not that calm cool and collected.  I am just in shock.  I am devastated.  I have seven different movies playing in my head…Sally crying on her 10th birthday because her mom is dead.  Will getting messed up with all the wrong kids in middle school because “he is going through something” and having only his Dad he starts to slip away to escape the sadness.  My husband who says every night “you can not die…I can not do this alone”.  It is all rapid fire in my mind.  It is so damn real I can hardly stop the tapes to answer his question.  What the hell was his question anyway?  Oh yes, had U of W told us that there was in fact a second Astrocytoma.

Yes. They told us something was there but not to worry.  He said “okay good, just want to make sure you knew about this”…..and then the meeting continues for another 30 minutes.  What he said in those 30 minutes I have absolutely no idea.  I was too busy being devastated.  Rolling the tapes…and thinking “how could I have been so wrong about the fabulous care I had received at U of W?  How could this possibly happen?  It couldn’t.  I would KNOW.  I would KNOW if they weren’t fighting everyday for me to make sure they found any and all suspicious matter around my brain.  My surgeon was a God to me..How could this happen?”

That is why I lied.

U of W did not tell us there was a second astrocytoma.  They didn’t mention a second questionable site at all.  But I wanted to protect them.  I was afraid that admitting this was the first I heard of it, would somehow compromise my dream team…so I lied.  And the next 30 minutes I sat there, despite being anywhere but in that room or even sitting on that chair.  It was surreal.  It was gut wrenching.  It was the worst possible thing anyone could say to me.

We finished our meeting. Next was oncology.  I had no interest…we walked out the door.  We said nothing.  We stood at the elevator door and both of us broke down at exactly the same moment.  It was awful.  How could this be?

I looked at Will and said “I can not do a second resection.  I can not.”

He looked at me and said “When did Dr. Patel tell you about the second astrocytoma?”  I looked at Will and said “he didn’t, no one did…I just didn’t want UCSF to think that U of W didn’t know what they were doing”.

I was scheduled for a clinical trial the next morning using a new machine – only three in the country…because it probably costs about as much as Air Force 1.  It was to revolutionize MRI’s.  I had told every doctor “don’t waste your time trying to get me to do a clinical trial for treatment.  You will not prevail.  I am not interested”.  However, I am happy to help you create better technology, so yes, I will do this MRI on steroids as long as I get to leave with a copy of it to bring back to U of W.

But now the stakes for tomorrow’s scheduled uber MRI are much higher.  It will identify the new tumor and its size and probability of how lethal it will be.  A second site tumor is not good.  Especially on the brain.  Especially when I’ve had three melanoma and when melanoma spreads one of the first places it goes is to the brain.  This may now be metastatic cancer.  Immediate downgrade from a Stage 2 cancer to Stage 4.  Game changer.

We walk out of the hospital and try to get an uber but now it is 4:30pm in the center of a crowded big city and there is no uber within 20 minutes of where we are that is available.  So we walk and we walk and finally find a good old fashion taxi.  We get off at the Embarcadero and we walk with no destination in mind and we are silent.  Will breaks the silence and says “we can not tell anyone about this.  We need to wait until the results come back in four days.  We don’t want to get anyone else hysterical because we know that is precisely what would happen.  And that doesn’t help matters.  So it’s just the two of us.”  I agree completely.  We have both already been overwhelmed by the outpouring of love and care and prayers.  This would put it in overdrive.   And it feels so heavy and so looming and yucky and just feels like something really bad is about to happen, and you see it in slow motion and there is nothing you can do to stop it.

We cancel our dinner plans for the evening.  We are not in the mood.  We don’t even want to eat.  But I want a drink.  So does Will.  A stiff one.   We stopped at one of my favorite SF staples – Slanted Door.  We sat at the bar.  It was empty when we got there. That was good.  We each ordered a glass of wine and a scotch and we lifted our glasses and Will just said “I can not believe this is happening, just know how much I love you” and I just said “I love you too and I am so so sorry this is happening.  I am so sorry.  You married a lemon”.

Well that at least lightened the mood a little bit.  We asked the bartender to please take a photo of us.  I immediately posted it on Instagram and just said “my hero”.  That was my tell…but no one would know what it meant until we knew for sure.  I don’t post very often.  But in that moment all I could think is how did I get so lucky.  This guy is stronger than anyone realizes.  He is rock solid.  He is going to carry me through this. And for the first time in my life, I need to be carried.  I am not strong enough.

After our first drink we decided to order a few small plates and walked back to the hotel.  Rented a funny movie and went to bed.  Devastated.

Our little weekend away just became the worst trip ever and held a secret we would have to hold for four days.  I know four days doesn’t sound like a long time…but when it is potentially a matter of life or death, four days might as well be four years.

I can’t even waste your precious time reading this going into all the details the next day in the super new state of the art MRI.  I will say just a few things.

1  I would say they FLAT OUT LIED, Will likes to say “they conveniently left out a few things”, when they described what was ahead of me and what the experience would be like.

2  I was in the machine with my head bolted down locked in a vice for 80 minutes.

3  The machine was so violent that while my head was in said vice it shook so hard that it moved my body back and forth so much that my leg almost fell off the table so I had to grip the sides of the table I was laying on with my hands so I would not have my head in a vice with my body off the table.

4  When they say it’s a little louder than a typical MRI that is where the lie came in.  I think it was about 30 minutes in and I am truly feeling like I am about to have a seizure.  I can not believe how loud the beeps are.  Beeps is not the right word.  It sounds too cute and light.  These were long long honks and it sounds as loud as if you were standing right under the bell when someone pulls the fire alarm.  Actually louder truth be told.  I have never, ever heard a sound this loud.  Not at a rock concert…no where.  And it is directly inside your ear.  And no, there are no head phones. They give me the heads up this next series will last 8 minutes.  So I start counting to 60 a few times.  I give up because I literally can’t count, the noise is so loud.  I decide to start counting the beeps/honks.  Several of the eight minutes has already passed.  I counted 285 from there.

5  That wasn’t it.  I still had 42 minutes to go and it only got worse

6  I came out of the room when it was over.  I went into the dressing room to get changed.  I looked like a crazy woman.  Truly.  I’ve never felt this way before nor have I ever again.  The trauma was brutal.  I walked out and Will just looked at me and said “Oh my God are you okay?  What happened”.  I couldn’t let him touch me, I couldn’t say a word.  It was as if I had a stroke.  I just stared and kept my arm out so I could be alone and no one could touch me.  Finally, as this sweet man is sitting there completely helpless, I am sure feeling like he is literally seeing his wife leave him, I look at him and said “get the f*ing copy of the MRI.  Do not let anyone tell you it will take a few days.  We are not leaving without it and by the way, our flight is in one and a half hours. I got the time wrong.  I am sorry about that.”

So I sat for 45 minutes.  The receptionist (huge liar-and not really a receptionist – she was a researcher, this was the project she had been working on for a few years…she is up front to greet you and give you a lay of the land) was trying to talk to me, asked me if I needed anything.  I refused to look at her or speak.  Everyone who knows me know that is HARD for me to do.  I just stared.  I closed my eyes with tears rolling non stop.  I was completely silent.  Finally Will walks in huffing like he just ran a marathon.  Looks at me and says “Honey, I am going to help you up.  I have a car waiting for us, suitcase is already in the trunk…and I have the copy”.  My Hero.

The receptionist looks at us and says “thank you so much for helping us with this incredibly important research project. We really appreciate it”.  Will goes to grab the door.  Safely out of ear shot.

I looked at her and said “you lied.  Don’t do that to the next person who is trying to help you.  You are a total liar and completely unethical.  I hate you.”

I never looked back to see if it had even registered.  I didn’t give a s**t. And no, Will doesn’t know I said this.  But when he reads this he will probably laugh and say “yep, that is my wife”.  Everyone who knows Will knows he would NEVER say anything like that.  He is too refined and too forgiving.

The doctors had said one of the areas that would be impacted by my brain tumor was Impulse Control.  I’d like to say in that moment, it was a delightful excuse to say what needed to be said.

I prayed for the next four hours that I would not have a seizure.  I told Will that those 80 minutes were infinitely more traumatic than the craniotomy by a huge amount.

Thankfully I did not seize on the plane or when I got home.

But now we had our little secret and four more days before we would find out.