It’s A Beautiful Day

Fall is my absolute favorite season.  Humidity gives way to crisp air, trees transform to an array of stunning colors and then there’s the food… enough said.  Aside from all that, fall serves as a subtle, beautiful reminder of the transient nature of life – all that lives eventually dies.

Lately, Chris and I have heard many stories of people suffering from brain tumors that haven’t fared as well as him.  Hearing these heartbreaking stories leads to such a heavy feeling of survivor’s guilt.  Why did Chris survive and other worthy, amazing people have not?  Was it divine intervention or just pure luck?  I’m not sure what I believe, but I often wonder if we are living our lives as we should considering the enormous gift we’ve been given.  Perhaps we should be experiencing every ounce of life we can – going on African safaris, skydiving, volunteering as much time as we can to those less fortunate.  Can the way we live our everyday, middle class America, 9 to 5 life ever be enough to say thank you for the gift of life?

The fact of the matter is I’ll never know why Chris survived and the alternative will likely forever haunt me.

In terms of survivor’s guilt though, I think I do have an answer.  While driving to work this morning, I opened the sunroof and commented to myself on how it was my favorite type of autumn day …and then it hit me.  We don’t need to win a Nobel Peace Prize or travel to some far away land to really live.  To do justice to those who haven’t survived, we just need to live it well – no matter what we’re doing.  So do me a favor today.  Take all of your everyday experiences and try to make it worth something.  Smile more.  Laugh until your belly hurts.  Really taste that morning coffee.  Do something nice for someone just because.   Life doesn’t have to be “big” to be wonderful and fulfilling.

Take joy in all the simple things for those who can’t.

Submitted by Ashley Cusano

Maneater [Reprise]

“We rarely get to prepare ourselves in meadows or on graveled walks; we do it on short notice in places without windows, hospital corridors, rooms like this lounge with its cracked plastic sofa and Cinzano ashtrays, where the cafe curtains cover blank concrete. In rooms like this, with so little time, we prepare our gestures, get them by heart so we can do them when we’re frightened in the face of Doom.”  Silence of the Lambs.

It was time, once again.  I was wheeled from my pre-op room around the hospital hallways down to the gamma knife room.  What I remember most about the gamma knife room was that it was very cold and bright.  It was a large room but without many objects.  In fact, there wasn’t much at all – just the machine where treatment occurs.  The nurse and oncologist had me lay down on the cold metal slab.  While this was nothing new, the disturbing part was when they screwed my head down to the table so that it could not and would not move during the treatment.  Much to my chagrin, the bolting down occurred and not before long,  my head was affixed to the table –  as in it was bolted to the table.  Crazy thoughts like “what if I sneeze during the procedure?” ran through my mind.

Once I was guided into the machine, I closed my eyes and let the games begin.  Yes, the games.  I envisioned the procedure something similar to a game of Star Wars.  I could not see what was happening behind my head, but I knew beams of radiation were streaming into the tumor and simultaneously destroying its growth.  In actuality, this machine administers radiation in a hemispherical array and hones in on the specific target.  Hence, the mapping that I discussed in part one of this post.  The rest of the brain tissue is left untouched.  The entire procedure lasted about one hour but felt like eternity.

I was guided out of the machine and aided to sit up where the mask was removed from my face.  The oncologist grabbed his trusty drill and began to remove the screws that held the frame in place.  Forget the fact that I could not feel the pins coming out of my skull or feeling the blood that dripped out, the sounds of the drill so close to my ears still haunts me to this day.  The pin sites were all cleaned and my head was wrapped in gauze.  photo(9)Alas, the procedure was over and I was wheeled back to where my family was waiting during the treatment. I could not be happier to be going home – but who am I kidding, I’m pretty sure that anyone who is released from a hospital stay, no matter how long or how short, is happy to be told they’re going home.

It didn’t matter to me that I felt nauseous, hot and then cold,  extremely groggy and tired from the procedure.  After all, this was all “to be expected.”  I do my best recovering at home.  admin-ajax.phpComfy chairs, good food and the best nurses.  Not sure if they would agree though…

Up to today, I have felt great and have no reason to believe that there is any further growth.  Yet, I cannot be certain and will always have my doubts.  I prepare for the worst because then, any sort of good news makes me feel like I’m on top of the world.  Yea, I deserve that.  Hopefully good news comes my way next month when I go back for my MRI.

Maneater

At the time that I began writing this blog, I had just experienced my latest obstacle in my life as a brain tumor survivor:  Gamma knife surgery.

As a reminder, at my MRI last October, it was discovered that there was a small regrowth of the tumor.  But so quickly?  Yes, this was the unfortunate truth.  I knew what I needed to do: I remained resilient despite the news; I had to continue battling and fighting on.

I was presented with three options –

(1) we could take the “wait and see” approach and re-scan in three months to ensure that there was no further growth;

(2) daily radiation for six weeks to destroy the growth of the tumor cells and radiation to the rest of the brain if other cells were discovered; or

(3)I could undergo gamma knife surgery.

I tried to rationalize and understand the benefit to each.  Each option had its pros and cons in my mind but I just could not reason with myself why I should wait and allow the monster in my head to continue to grow and possibly affect my life as it had five years ago, nor could I envision myself going in for treatment every day for six weeks if it was possible to have it done in one day.   I had already made my mind up, but wanted to hear the thoughts of my medical team.

Each of the options were presented, again all having pros and cons and different possible outcomes that could affect my livelihood, but  at the close of my consultation with the radio-oncologist, he indicated that gamma knife surgery would likely be the most effective course of treatment.  Relieved to hear this, I expressed that this was my preference.  Yet, before a treatment plan could be established, a consultation with the “brain tumor board” was necessary.

A few days later, I got the phone call that gamma knife surgery was the chosen course of treatment and I would be on the schedule before the end of the year.  Time to get my game face on yet again and prepared for battle.

I knew very little about gamma knife surgery; let alone what it even meant.  However, I soon read up on the procedure and educated myself on it.  I’ll do my best to describe the pre-procedure steps below and then in my next post, I’ll tell you about the treatment itself.

Upon arriving for my treatment, I was brought in to put on my bracelet and hospital gown. This entire routine has become all too normal for me. The nurses gave me a finger prick, followed by putting in an IV port to administer medication and contrast for the MRI.  However, this is where this procedure differs from being given anesthesia and waking up hours later.  On gamma knife day, the neurosurgeon and nurses applied a local anesthetic on my forehead where the head frame was to be placed.  Using a drill.

The head frame was made of a heavy metal and was extremely tight-fitting to my face.   When I was looking at it sitting on the table, I didn’t connect the dots that this slab of metal would soon be placed onto my face and head.  I was unable to appreciate and fully comprehend that that was the frame to be put onto my face.  While the nurse held it in place, my neurosurgeon got his drill and proceeded to drill pins into my forehead and skull to hold it in place.  Not even the localized anesthesia was not enough to prevent the pain.  But alas, the frame had been affixed to my head.  I don’t know what a vice feels like, but this sure as hell felt like what I would imagine.

Next step: picture a colander.  Something very similar looking to that was then placed on my head.  I wish I could have seen what was taking place at the time because it sounded like a great game of battleship was taking place…”B52”…”E13.”   Joking aside, the letters and numbers were the doctors’ method of mapping where to administer the radiation.

Upon completion of the mapping, it was time for the MRI.  I was wheeled around the hospital in a wheelchair with this metal vise on my face – if I could have known what the visitors to the hospital who had seen me were thinking.  I have been in for numerous MRI’s, but never one with a metal frame on my face.  The radiologist had to add another piece to the frame and this made my head feel that much heavier.  Luckily, this MRI was only 35 minutes, compared to the usual 50, but the frame and contrast combined to make it one of the most unpleasant MRI’s I’ve had to date.

With all of the “pre-procedure” work over, it was time for lunch… with the frame still on my face.  I thought to myself “how the hell am I supposed to eat lunch with this thing on?”  I wasn’t given a choice – either I was going to eat my lunch or fast some more until dinner.  So in came my gourmet lunch and drink (luckily, they gave me a straw).   I heard an occasional snicker from Ashley and my parents as I wrestled with the food to get it around the frame and into my mouth but I managed to eat and drink without spilling on myself.  This is a perfect example of a simple task too often taken for granted.

All the while, and what nobody knew at that moment was the angst and restlessness that I was experiencing.  Outside, I was smiling and content.  On the inside, it was a completely different story.  My mind was racing and I began thinking of the worst possible outcome.  But then, like I had done on previous occasions, I took a deep breath, composed myself and prepared to walk down the hall toward the gamma knife room.  A red-haired nurse greeted me.  I wondered if her name was Clarice…

If I Had A $1,000,000

Let me just get this out there – having a brain tumor is life-changing. No, I don’t mean in terms of how I look at life now.  Rather, I am talking about the unintended consequences that we don’t think about when we are faced with this type of situation unless we are in it.

From what I’ve been told, recovery after brain surgery can vary from: having a quick and seamless recovery, to being in the fight of your life like I faced or you may never recover and remain in a diminished capacity.  And if that’s not enough to think about, the cost and toll of living as a brain tumor survivor can wear you down pretty easily.  Let’s talk about cost…

As kids, we are told that if we do well in school and pursue our dreams, we’ll make lots of money and live a happy life.  But what our teachers did not tell us as innocent students in elementary school is that sometimes, life throws us twists that come out of left field and blind side us – and leave us scrambling for solutions on how to solve them.  Growing up, I at least assumed that nothing could stop me if I did well in school and graduated college, let alone graduating law school.  After all, we work to make money to pay for all of life’s wants and needs.  Until you are admitted to the hospital, that is, and your money can no longer be spent on your wants.

When I returned home from a wonderful vacation in Nantucket two weeks ago, my wallet was thin.  Yet, it was well spent.  However, within the first few hours that I was home, the mailman delivered another bill for my MRI this past March that I currently pay on a payment plan and CVS called because my Keppra is ready to be picked up.  This leads me to my rant – the absurd costs of health care and health insurance.

For an MRI, my insurance company bills the hospital $4,900.  Yes, you read that correctly – approximately $5,000. I for one am extremely grateful that MRI machines exist.  But for the forty-five minutes, sometimes an hour, that I am in there, I find it hard to believe that that machine actually requires $4,900 to run, notwithstanding the plethora of MRI machines on site.  And I understand that the machine produces images but they are all viewable on a computer.

The next item on the bill: the cost billed by the technicians to read that MRI – $450.00.

Then there’s an associated cost for my doctor’s visit.  A measly $245.00.  For me, and I’d imagine others in my position, the doctor’s visit is the most important part of the entire process.  I get to hear progress from my own doctor’s mouth and view the images so that I can see the news for myself.

As for surgery, well I hope you’re sitting down because I don’t want to be the cause of any unintended fainting spells.  You’ll recall that I had gamma knife surgery last December.  The total amount billed from that one-day procedure alone was $92,000.  That’s for one day.  For my extended stay in July 2008 when I had the tumor removed and the surgery for the subdural hematoma, the hospital billed the insurance company $297,000.00.

Okay, so once the tumor was removed and my head was mended back together, I needed to rehab and did so at Gaylord Hospital.  For each day that I was there, our insurance was billed $2,600.00.  This was for my therapists, pens and paper, flash cards, alphabet charts, balancing beams and workout equipment.

The scary bottom line is this: If I didn’t have health insurance at the time, I would not be here because the procedure would not have been performed.  I am grateful for health insurance, however it continues to remain a problem for so many Americans today.

Fortunately, I am offered health insurance through my employer but for someone like me, even the insurance plan is costly.  For my co-pay to kick in this past year, I had to put up the first $4,000 of medical expenses.   When I called to make my payment on my account last week, I was informed that my “other” balance was going to be sent to collections soon if I did not pay the entire sum or apply to pay the balance on a payment plan.  After all said and done, this “other” balance was my procedure in 2012.  At the time my procedure was performed, I had not yet hit my deductible, so my portion of coverage was in excess of $2,000.  Add that to my 2013 balance and my total responsibility is $2,530.67.  Well, I guess my payment plan was just extended.

Some people go to work to provide for a family, pay their mortgage and have nice things.  What you cannot plan for is your health – you can only hope that you stay healthy each year.  If you don’t, not only will your personal world spin around, but your financial health will too.  Who is not going to try their best to afford to pay for their life?  And while I know hospitals are running businesses too, quite frankly, the extent of the costs seem somewhat criminal.

Playing for the Cure, Brainstormin’ – A Success!

I am pleased to announce that, last night at Playing for the Cure, Brainstormin’, we surpassed $10,000 in proceeds to be donated to the Yale Brain Tumor Center for research and treatments for brain tumors and brain cancer!! Thank you to everyone who came out last night and to everyone who gave donations, and to our corporate sponsors. Thank you Broca’s Area Daphne Lee Martin for providing a night filled with great music. However, the highlight of the night came from my surgeon, Dr. Piepmeier. Humbled and honored, and looking forward to our new partnership with Yale-New Haven Hospital:

 

 

Playing for the Cure: Brainstormin’

Playing for the Cure_Brainstormin'-2There’s one week to go until Playing for the Cure: Brainstormin’, a benefit concert for The Yale Brain Tumor Center next Friday, August 15th at The Ballroom at the Outer Space in Hamden, Connecticut.  All proceeds raised will be donated to the Nora Brignolo Fund, c/o Dr. Joseph Piepmeier at the Yale Brain Tumor Center to raise awareness and research for the cure to brain tumors and brain cancer.

The concert is featuring the talents of Broca’s Area and Daphne Lee Martin.  Seeing that I never blogged about it until now, I’ve included a link to one of the articles here.

My family and I completely overwhelmed by the show of support and generosity from the community already.  A huge thank you to media outlets such as the Hartford Courant, CTNOW, The New Haven Register, The North Haven Courier and The North Haven Post; our corporate sponsors The Hartford Courant, Stop and Shop, Edge Technologies, Doug Anderson, ShelfSpace Marketing, LLC, Carla’s Pasta and Severance Foods; and to all who have donated the awesome prizes for our raffle.  Your generosity and support of our effort is extremely appreciated.

For me, the work and time that are expended on putting an event like this together are a no-brainer (no pun intended) and I know my family would agree.  It is simple acts such as receiving a handwritten letter along with a check in the mail from a fellow brain tumor survivor, to receiving an email from a brain cancer warrior right here in Connecticut who had been looking so forward to our event letting me know that due to her medications and rigors of treatment that are currently wearing her down, it’s likely that she’ll be unable to attend but is sending a check regardless that make me realize my purpose in life and give me a sense of pride.

Please help me in this final week  to spread the word and help me in saying “thank you” to the doctors and caregivers who saved my life.  I look forward to seeing you all at The Ballroom at The Outer Space next Friday night!

Changes In Latitudes

At the time that my shunt was inserted, the doctors cautioned me that I should prepare myself for the day that it would need to be replaced.  Little did I know that that day would come just four years later.  While nothing in life is certain, nor should anything be taken for granted, the actual expectation was that the shunt would only need to be replaced every 10 years or so.

I’ll admit, I do not profess to understand all of the complexities and technicalities of the brain, though I wish I did.  Ever since my diagnosis, I have become fascinated with the brain, how it works and controls every part of the body.  I soak in everything I can possibly learn about it.  My doctors informed me of the signs and warnings that I should be on the lookout for that would signal a need to replace my shunt: redness or swelling along the path of the shunt, headaches, confusion, memory problems or any other symptom I experienced prior to having the shunt inserted would indicate there could be an infection or malfunction.

Knowing everything I had learned about my shunt made the results from my six-month follow up MRI in September of 2012 surprising.  I was feeling great and functioning normally – none of the signs my doctors warned me about were ever present.  Low and behold though, diagnostic imaging showed a buildup of cerebro-spinal fluid in the ventricles and a malfunction with the shunt.  But why wasn’t I manifesting the symptoms I had previously, such as trouble with my speech, confusion and aphasia?  Had I been so entangled with the bar exam that I lost sight of how I was feeling and lost my ability to assess myself?  Despite my optimism that all was well, my surgeon decided that it was already time for a shunt revision.

Emotionally, this was a major blow to my recovery process.  I had come such a long way in the span of 4 years and now I had to face the prospect of starting all over.  I feared that the shunt might not be as effective as the first one or that complications which I did not experience the first time around might arise.  I had finally found my groove and was comfortable with my new robotic mind – and now this.  Why couldn’t something, just anything, go right for me for a change?  But hey, nothing good comes out of complaining.  Glad I can find a sense of humor in these things now530e9c97ed7a3e96831b5a77bd3ca664.

On October 1, 2012, I headed back to Yale.  As I was wheeled into the OR and instructed to lie down on the cold metal slab for the surgery, I was again faced with the question of “what if?”  But in my head, I knew everything would be okay and I’d be as good as new in no time.  Before Ashley and my parents had the chance to enjoy the spread of food that the hospital serves them while I’m having my head drilled open, the surgery was done and I was back in my room sleeping off the anesthesia.  Sorry to them all that they were unable to finish their chocolate chip muffins…

This hospital stay was different from my previous stay, however.  Rather than being a complete invalid, I was conscious and alert of my surroundings and life around me.  Then again though, how could I not be?  I was woken up every hour by the nurse and resident neurosurgeon to take my temperature, make sure that I was sleeping, asking me questions such as “do you know what day it is” or “can you tell me where you are?”  My favorite one of that night though was “Chris, have you been walking around?”  I thought to myself, “seriously, at 4:30 in the morning?”  My response: “no doctor, I’m just trying to sleep.”  I had returned to my quick and sarcastic self in no time.

I wrote a text message to my parents at 4:30 that morning to share with them the latest updates.  I felt like my life had become a daytime soap opera.  img_ynhh_tab1Rather than General Hospital, I’d call it “Yale-New Haven – Against All Odds”.

How did my life come to this, I wondered.  But it did and I have learned to accept it because after all, life is full of adversity and I had learned to readjust the sails to go with the direction of the wind.

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