25th Post. The Staples

I am home from my quick one night visit to the hospital.  My sister Maureen, whom I affectionately refer to as The Pitbull…a name she earned several years early when our father was battling an equally rare form of cancer (Renal Cell Carcinoma – otherwise known as Kidney cancer).  I remember it like it was yesterday.

The benefit to five children is we are able to take shifts…but it seems that we ended up coming in clusters…and sometimes that cluster was five kids and our mom in the room at the same time.  The doctors would walk in and literally take a step back.  Whoa they would say.

My brothers would usually say something like “yeah Doc…a lot at stake here…He is the best dad in the world”…

My sister would say to ANYONE who walked in “please wash your hands in front of me before you approach my dad…thanks so much”.

I was the doctor of the group.  We would find out the latest on his condition…and I would spend a few hours googling everything and have a litany of questions for the doctors that walked through the door.  Nothing is more calming for me than data.  I love data.  So a googling I went.

I have to admit, I got pretty good at it.  My father would look at me with these eyes that said “ENOUGH ELIZABETH!!!”.  However, I would not.  I needed to know.  I had lots of questions.  I like decision trees.  I like “if this than what….if that than how do we proceed?”…I prefer to know the worst case scenario.  My imagination can run wild and I can make up a much worse scenario than any doctor could tell me.  It makes me calm.  It makes my brothers sad/angry.  My sister just sits there.  Her sole job focused on my dad. It is not until we hear everything that she will ask questions.  As a judge she is comfortable speaking her mind and giving her opinion.  She waits for me to do the asking.  She will tell us what it means.

One day I really had some very legitimate, detailed questions about the particularities of his tumor.  I used all medical terms (as I had written them down and what it meant) so I could ask the questions with a modicum of  intelligence.

The doctor said to my father “I didn’t realize there was a doctor in the family”…and HE WAS NOT BE SARCASTIC!  HE REALLY THOUGHT I WAS A DOCTOR!”.  I was so proud of myself.

When the doctor left the room my dad looked at me and said “oh my goodness we have created a monster.  But thank you for getting clarity for all of us”.  It was the least I could do for my dad, my family and selfishly for me.

So I like questions and I really like answers.  Thoughtful, solid, not going to change answers.

So back to the situation at hand.  Monday, April 16.  This is THE day we find out the pathology on my mass/tumor/growth/whatever the hell it is.  So much easier to just call it Polly.

We arrive at the Neurosurgery office at U of W.  Even my sister and Mom who had not been there remark about how beautiful the office is.  My sister says “wow this is pretty nice”.  I told them the story about Will and the sandwich.  We all started laughing.

My name was called and the four of us are led to a room where we wait.  Charitey who is this aptly named woman and is Dr. Patel’s assistant, walks in and says “lets take your staples out first and then Dr. Patel will come in”.  Well…no, that is not happening.  The concept of having 15 staples removed from my head is super stress inducing and sort of on a crazy level, completely grosses me out.  I can not do that right now.  I need to know.

So kindly I say “Charitey, would you mind if we talk with Dr. Patel first…I just need to know and then I can prep myself for the staples. ”  She acquiesced.

I am sure she was wondering how it is I was more anxious to get staples out than to hear the results of the pathology.  I look back on it now and realize there is a reason they go in that order.  If you hear bad news, and then compound it with having staples removed from your skull…well, that just makes for possibly one of the worst hours of your life.

If the staples are already removed…the news – good or bad, is at least the last thing you have to deal with.

Enter Dr. Anoop Patel, the man I adore and trust.  He told me from the very beginning it was Brain Cancer.  He never waivered.  We had our decision tree all marked out.  He didn’t believe it was a glioblastoma because my tumor had not picked up contrast.  However, having never seen a tumor my size (small) he said there was still a possibility it could be -but that would mean it would have been caught so early…it would actually be interesting.  We crossed this off…I have no interest in being interesting.

So we went to the two main types after Glio.  Oligodendroglioma and Astrocytoma.  We talked about low grade and hi grade.  We talked about all the genetic mutations that could exist from IDH1 to 1p/19q co-deletions and of course P53…which we pretty much knew existed.  P53 are your fighters, your warriors.  If you have cancer, clearly something bigger, larger and stronger has killed or compromised your P53’s.

I wish I was technically sophisticated enough to just show you the decision tree…but I can’t.  I am hopeless.  Perhaps this is why I married the “tech” of the Ward family….

Basically, we want it to be an Oligodendroglioma.  We want Low Grade vs High Grade.  We WANT the IDH1 mutation.

He sits down, I introduce Dr. Patel to my sister Maureen and reintroduce my Mom.  He knows Will of course.  He apologies again for missing my text the night I was in the hospital.  I assured him I was just fine and was actually relieved.  Being home for a night with your wife, and then a full Sunday with your beautiful baby is something I wish for him more frequently.  He smiles and nods.

He looks right at me…locked on. He says, well, it’s not the news we wanted.  The pathology was very difficult to get to.  It was presented at the tumor board multiple times.  There were a few times we thought it was one thing, and then we would come back the next day and the cells had shifted.  So….

You have an astrocytoma, a malignant brain tumor.  Before he got it out of his mouth, I had looked at my decision tree and said “wait, but you said the one we don’t want it to be IS AN ASTROCYTOMA!

I went back to my notes checking everything…then flipping the page to my decision tree. Before he could tell me each “feature” of my tumor I was asking, based on our decision tree about each point.  Do I have the IDH1 mutation?  Low or High.

He paused.  He looked at each of us with confidence and took command of the room  No more answer questions, he was going to tell us how it was.  Calm, cool and confident.  Everything you want in your surgeon.

So the bad news is it’s an astrocytoma vs the oligodendroglioma.  Good news it is low grade vs high grade.  Bad news it is in fact a malignant tumor and cancer.  I say this because this is where brain science is confusing…and I myself am still a bit confused by this.

As for treatment there are two options, Radiation with concurrent chemo and then adjuvant chemotherapy afterwards -for almost 1 full year.

The other treatment is what is called “Wait and Watch”..with MRI’s every three months for five years, and then 2/year for the rest of your life.

Dr. Patel felt it would be a jump ball on treatment and needed us to go see the oncologist and radiological oncologist.  It would be their decision.  He hesitated to give his own opinion but said he thought it would be 50/50 as to what treatment is best.  So of course I asked “well if it is 50/50 who decides?”.  Dr. Patel looked straight at me, paused and calmly just said one word  “you”.

Well that is not fair.  Despite the fact I feel I am just days away from my Google MD, I am in fact, not an MD.

So many things appropriate and not so appropriate flew through my mind.  First, I immediate recalled those cheesy commercials where an actor would come on dressed in a doctors uniform from the role he/she played on some television show and say “I’m not a real doctor but I play one on TV”…I almost started to laugh thinking about how I managed my own fears/grief over my dad  and needing information.  Control… “I’m not a real doctor but I google and obsess and will stay on line til all hours of the night to get answers and questions to ask”.  It wasn’t funny.

I said to Dr. Patel I thought it would be unfair and cruel to allow the patient to decide on a jump ball 50/50 split decision.  If this is what it means to advance modern medicine – shift the responsibility to the patient…I want to live in the 1950’s – this is a bunch of bunk.

He said we will have our oncology department contact you and set up the meeting.

That was it.  Meeting was over.  We were all crestfallen.  I think, so typical of my sister (I wish you can hear her voice…) she said when the doctor left the room “ok, well, um that doesn’t sound good”.

Nothing gets by that sister of mine!

And to make matters worse, in my need to try to control world order (as it related to my brain), I had switched up the order today at the doctors appointment.  I still needed to get my staples removed.  Talk about adding insult to injury.