Life, As I Know It

My May To Do list: 1) Do not die from brain tumor. Check! 2) End marriage. Check! 3) Put house on the market. Check (sort of)! I've been busy.

Now, I need a "new" place to live in Maryland -- think a rental for a year, then we will see. And, also, a job.

Divorce is lucrative if you marry a Trump, but, sadly, I married a Thompson. (Note to self: In future, marry for money, not for love.) I'll cut my losses because I got a beautiful kid from that walk down the aisle, so no hard feelings on that front. Ok, not many, anyway.  Life is short, I am moving on ...

Any ideas for either, would love for some friends to send my way! Please and thank you.

STABLE

We'll start with this: subependymoma is stable.

Yesterday’s score: Inoperable brain tumor - 0. Me - 1,000.  Friends have asked if the fact that I have been stable for five years means that I am “cured”, as is the case with some other malignancies.  Well, no, unfortunately.  The nature of brain tumor means that while the tumor remains in my brain, I am at risk for growth, change, bleeding … many possibilities that would require OMG! WE HAVE TO DO SURGERY RIGHT NOW!  WITH A BUTTER KNIFE!  IN THE ELEVATOR!!!  Or so I’ve learned from Grey’s Anatomy.

When I was first diagnosed, I wanted it out.  Live or die – let’s do this!  Nobody would operate while I was still walking, talking, driving, writing.  I was told by every elite brain tumor board on the East Coast, and one on the West, that there was no way to remove the tumor without an over 50% chance of “unacceptable complications” - paralysis, loss of sight, speech or, that ultimate complication, death.  The tumor is in middle of my brain, specifically, the ventricles.  It is one of the riskiest surgical locations to access, due to all the “good brain” a surgeon has to saw through to get there.  Out of the four ventricles, my tumor is in the riskiest intraventricular location.  Of course it is.  Because it is MY brain, whose philosophy has always been play hard or go home. 

Therefore, the tumor stays, and hopefully, plays nice on future MRIs, which I will have as long as I live.  I am not cured, and there is more medical business in my near future. Tremor (why Starbucks puts lids on their coffee), cognitive impairment (Here or hear? There or their? Wait, don’t tell me…), balance issues (no gymnastic Olympic medal in my future), memory problems (Dear God, have I really lost my car AGAIN??! That’s twice.  Before noon!) continue, so the neurosurgeon is keeping me on the path of more neuro help, rather than less. I will see the neurocognitive neurologist at Hopkins (the Neiman Marcus of neurologists, “The world’s best!”) later this month, who will deal with all the non-surgical neuro issues.  I call her the “why is my brain full of mashed potatoes?” doctor, which I am sure she appreciates.

That said, there is always the very real possibility when I see the neurosurgeon that he will decide to do surgery on my brain.  Like, in four seconds.  I am not undermining that yesterday was a win, and a BIG one.  My path is still … challenging, naturally.  But, you can’t win the Derby, Preakness, and the Belmont all on the same day, so while the Triple Crown of brain health is still elusive, yesterday was a true victory.

If you have ever experienced a come-to-Jesus crisis, one fact that holds true is that you learn who your friends are and how much you are loved.  In my 36 years on this earth, I have been fortunate enough to have a beautiful childhood, in a beautiful home, with parents that love me, to attend THE BEST COLLEGE EVER (HOKIES!) and a law school where I studied under renowned (ironically) Health Law professors, and to have practiced as an attorney with some impressive firms.  You – all of you – have touched my life at some point during this journey, and I am so lucky to know you and to have experienced your friendship.  You, my friends, have brought me lasagna, sent me flowers, called, texted, sent messages, held my hand, let me cry, let me talk, or let me be silent.  You have uplifted me with your encouraging words, your support, and your unwavering kindness.  And, for that, I am so thankful.  I am honored to know all of you, and to have shared some aspect of our respective lives, as friends.  A heartfelt thank you to all of you for your support, your empathy, your words which make me smile, and cry, at the same time.

Yesterday (after the Xanax wore off and before the chocolate martini), I drove straight from Hopkins to pick up Ethan from afterschool care and bring him to baseball practice.  He was thrilled to see me, since he knew I had a doctor’s appointment, so he thought his dad was picking him up.  I sat on the sidelines and watched, in the sun, chatting with other parents about nothing of consequence.  The coach came over after practice to report that Ethan was crushing the ball, and that he looks forward to Friday’s game.  He saw the purple bandage from my IV, which I forgot I still had on, peeking out from the sleeve of my long-sleeved top, and asked what happened. “Oh, just some blood work.” I replied, “See you at tomorrow’s game! Maybe another grand slam for Ethan!”  As I drove home, I put on my sunglasses, and for the first time that day, allowed myself to leak silent, happy tears.

Sunday is Mother’s Day.  I have already received the ultimate gift, another Mother’s Day with my silly, charming, precocious son.  If past years bear repeating, I suspect that my tangible gifts will include a crayon-drawn card of me on horseback, yellow-haired, and wearing an orange shirt with a turkey on it.  There will also be a tray of burnt blueberry toaster waffles and a mug of hot water (“You told me never to play with the coffee maker!”), decorated with hydrangea blossoms pilfered from the neighbor’s yard.  

After breakfast in bed, I will put on the t-shirt Ethan made for me in kindergarten.  I will have to layer it over another larger shirt.  The one he made for me in class is an XS, and, after many washings, is now a skin-tight belly shirt.  Blue-paint kindergarten handprints mark the shirt in an unfortunate location (think breast health exam).  Yet, I wear this shirt every Mother’s Day, and my son revels in the fact that He Made It!  For ME!  And I Still Have It!  In the afternoon, we will ride bikes in Annapolis and have ice cream before lunch; a completely ordinary - and perfect – Mother’s Day.   

To my friends, I wish you an amazing weekend, full of ordinary miracles.

An Ordinary Day

Tomorrow at this time, I will be at Hopkins for my five-year brain tumor MRI and neurosurgery appointment. They will make me sign a bunch of consent forms, then give me a sedative, before putting an IV in my arm. It will be my right, because that is the one with the "best" veins. I always ask them to please not talk about my veins, because it makes me queasy. They always do, anyhow. 

I will be strapped down so I cannot move my arms, and then a Hannibal Lecter-type mask will be locked over my face. I will be told not to move, and to keep my head still. As soon as they tell me this, my nose will start to itch, it always does. I will be fed into a tube, where the banging, clanging, will go on for an hour. 

It will be loud, it will be cold. I will refuse a blanket (eww, hospital blanket!) and try to think positive thoughts, although my mind will wander to the injustice of how this became my life, why I am here, my fears, my hopes, and eventually, how RIGHT NOW my nose REALLY itches and I sort of have to sneeze. 

The MRI will end, and still sedated, I will wait for the neurosurgeon. I'll be told by a nurse to go get a cup of coffee or some lunch, but I'm still queasy, from the sedative and the IV and all that vein talk, so I will wait, with the book I brought unopened on my lap. 

The neurosurgeon will arrive, he will measure the tumor on the screen and compare it to past scans, ask me about my symptoms, check my reflexes, ask me some questions, "Who's the President? Subtract 7 from 100, keep going ... Remember these three words, watch, pen, ball ... OK, what were those words?" (Maybe I should be studying now?)

It is routine - my twelfth visit - yet, it never is. Because you never get used to being slapped in the face by your own mortality. It never feels "normal" to confront a potentially life-limiting illness in your 30s (my doctor does not enjoy the word "terminal"). 

When I was first diagnosed, the five-year survival rate was 32%, or maybe 50%, depending on what you looked at. "You are a statistic of one. That is all," said the neurosurgeon. I thought that was bulls^%t, because it was MY statistic of one, not his. 

My son was four, I was worried he would never know me. He'd have fuzzy memories, of course, but if I were gone, he would never REALLY know me, as a person. 

Scariest of all was that thought of putting my son through the sudden death of his mommy. Or the opposite, a gradual decline, a long goodbye, diminished vitality, and then a slow death. Which was worse? Did it matter? I could not control this. 

So here I am, five years later, and my nine-year-old boy knows me. I still have the same worries, and more. Facing a serious illness is, in a word, devastating.  Emotionally, physically, financially. Every possible facet of my life has been shattered by me being sick.  

Even my decade-long marriage has been a causality.  Sometimes people fall together during a crisis, and sometimes they fall apart. We were the latter. We had plans - law firm partnership for me, share in the Hamptons, 2.3 kids, a golden retriever ... not this. Not this! 

And, yet, even amidst all the devastation, I am still here. I am still standing. I am still fighting. I am still me, in all the important ways. I am funny (sometimes inappropriately so), I am an excellent writer (and working on getting a book published this year), I am a caring, involved mom, I am a loving and empathetic friend; I am a terrible cook, I am awful at math, I am always ten minutes late for virtually every moment of my life, I have little patience. 

I am both incredibly strong, and extraordinarily weak, sometimes in the same day. Sometimes in the same hour. In short, I am human. 

My son still has his mom, and he knows these things. 

Last night, we had a completely ordinary Tuesday, I picked him up from school, we went out for macaroni and cheese, we walked to the library to pick up some new Thea Stilton (him) and Jodi Picoult (me). He laughed, I laughed.  It was happy, it was easy, and I was content. 

Here's to five more years of perfectly ordinary days, and then five more after that. 

Wish me luck.