Day 7: I’m still a recovering wall-builder, people! 

This morning I woke up at 6am so I could shower and get some of my things packed before I caught the shuttle to NIH.  At first I was going to wear, what’s been my uniform for the last week—leggings, tennies, t-shirt and coat, but then I decided last minute to IMG_2758wear my new outfit from Anthro.  It felt like an affirmation of life and positivity.  I sat down in the waiting room of the clinic on the 9th floor.  It’s a large room with probably 25 seats all facing a  big, flat-screen TV with HGTV House Hunters playing. 

I strike up a conversation with a woman who checked in just ahead of me.  It’s common that many of the patients in this clinic today will have the same diagnosis as me.  We chat briefly about our experiences thus far and pretty quickly we are called back for vitals and then into exam rooms. 

I am brought to the exam room by three young, female physicians in long white coats.  They each have a copy of my history printed out in their hands.  They ask me questions about my history and recent symptoms.  I have had ongoing heart palpitations for years.  This always sparks interest, but a few years ago, I had a pretty involved work up and it revealed they are premature ventricular contractions (which are normal and usually harmless).  I explain all of this.  No recent symptoms.  Some clarification about the number of tumors removed in the second surgery, etc. One of the doctors does a brief physical exam, then they leave me in the exam room.  This is all moving much quicker than usual so I don’t mind the wait. 

One of the doctors returns with form for me to complete about which symptoms I had prior to my initial diagnosis.  I circle headache, dizziness, sweating, exercise intolerance, loss of consciousness.  All of these symptoms started when I was 16 years old.  It asks about how I was eventually diagnosed and by whom.  I may do a post in the future with this information. 

Another doctor comes back with a tube that she requests I fill with saliva.  She explainse that they have learned that saliva is easier to store and lasts 10 years so it is much more forgiving than blood for DNA research.  I spend some time gathering my saliva until the tube is filled. 

The doctor returns again and this time invites me to follow her down the hallway.  I am brought to a conference room.  Dr. Pacak stands to greet me.  The room is full of young doctors in white coats.  He asks me how I am doing.  I report no symptoms in the last year and fill him in briefly on some of the other aspects of my life.  He tells me that the report is really good, my disease is stable.  “That California sunshine and sea level must be agreeing with you. I don’t get to say this to many people.”  We make some small talk about San Diego and Wyoming.  He visited Wyoming, my home state, this past year and loved it.  He asks me if I have any questions.  I think of a couple and he explains his opinion.  By this point, I’ve learned that most questions are answered with opinion because there is not enough data to give a definitive recommendation.  But that still seems pretty good since I’m sitting down with a man who has dedicated his life to studying this disease.  We exchange a warm, long handshake and I’m excused.  Marianne follows me out of the room and shows me the images of my cardiac CT on her laptop.  The images are impressive.  The size is unchanged. 

That’s it.  That’s the end.  I’ll be back in a year or so to do it all over again. 

I immediately notice that something feels different this year.  By now, you all know I’m an avid student of Brené Brown.  In The Gifts of Imperfection she writes:

“We can’t selectively numb emotion. Numb the dark and you numb the light.”

I’ve described how during my previous NIH visits I almost completely shut down.  I was terrified to face the dark, which included fear of the unknown, fear of the response of those close to me, fear of emotional and physical pain, fear of being traumatized by invasive medical procedures again.  I built a wall around that fear and did my best to ignore it.  I numbed with food or shopping or Diet Coke when I could (but they take away the option to use a lot of those things here!).  I just built a wall and sat inside my fortress until it was over for another year. 

So at the end of the week, on a day like today, when I got the good news that my disease was relatively stable, I was confused why I didn’t feel the joy of that.  I honestly didn’t.  I hardly even felt relief.  What was worse is when I reported this result to other people and they responded (appropriately) with delight and comments about blessings and gratitude and relief and prayer, none of those things rang true to me.  So then I was hit with shame about how I SHOULD be feeling and what I SHOULD be thinking in this circumstance.  Obviously one SHOULD be happy and relieved and feel blessed and that prayer works. 

So today is different, not because I am totally enveloped in the joy of the moment.  I’m still a recovering wall-builder, people!  But I felt MORE today.  I felt MORE of that joy.  I felt MORE relief.  I was able to let Dr. Pacek’s words, “I don’t get to say this to many people,” sink in a little more deeply.  And that felt like a win.  Because I was willing to feel the fear and the pain, I was ABLE to feel the joy too.

As I have been experimenting with these concepts, I’ve heard from a couple of friends who are trying it out too.  Staying open.  Processing emotion.  Avoiding numbing or at least being conscious that that’s what we’re doing when we are doing it.  I think we agree that life feels like a little bit more of a rollercoaster.  There are definitely more ups and downs when you allowing yourself to feel instead of numb.  But I think the benefit is that we get to feel alive.  That we are unburdened from the hurts of yesterday and the fears of the future, which allows us to be fully present.  And when I am living in the present, it makes sense that I feel more alive, because that is really all that life is.  It’s what’s happening now, in this moment.