2 Weeks Post-Surgery!

Hi All,

I stole the blog back... at least for tonight!  First of all, I have no words to express how amazing the outpouring of love, support, prayers, and gifts has been.  Thank you would never even come close in satisfying my feelings of gratitude toward each and every one of you.  I have spent the majority of my days and nights in the den, which is covered with all of the cards, posters, and balloons that I have received.  Yesterday, after getting a fresh head shaving (makes it easier to care for the incision), I reluctantly made the decision to stop at work.  The time happened to coincide with our monthly Administrative Staff Meeting.  In walking in with Sue, my 30 or so colleagues applauded and were very happy to see me.  This type of experience is very uncomfortable for me.  I prefer to fly under the radar rather than have all of that attention directed at me.  Regardless, it was nice to see everyone.  I didn't hear anyone say that the Music and Art Department has been cut, so it's all good! ;-) We made a stop the High School, where my office is located.  After spending about 1/2 hour visiting with my Secretary, Christine, and the music staff, I began to feel exhausted and needed to leave.  Following one additional stop, we came home.  I ate some lunch and crashed on the couch for a nap.  I definitely have the desire to be out and about during the day, but it's obvious that I have a long way to go in building my strength physically and mentally to get through the day.

Tomorrow will begin with my Oncology appointment at MSKCC in Commack.  We expect the discussion will be centered around post-surgical treatment.  Is the plan to begin Chemo-Therapy immediately?  Will Dr. Nolan want to wait to see a future MRI scan first?  Dr. Nolan has proven to be unpredictable at times with his treatment plan, so we will prepare ourselves with some questions.  

Tomorrow, I'll write about a chance (or not) meeting with a gentleman at BJ's that I had today.  God is always working in my life and this was quite an example.

Parents

There are many heroes who support Jon and I as we face the challenges that accompany his diagnosis.  Four in particular have shown amazing faith and courage...our parents.  My parents were in town to celebrate Maggie's 5th birthday the weekend we found out Jon had a mass in his brain.  I can still remember walking through the front door in a haze from the MRI.  Jon was practically catatonic, sitting and staring into space after receiving the life altering news from me just minutes earlier.  He made sounds that I hope to never hear again...anguish mixed with terror, grief and shock.   Those sounds will never be erased from my memory.  Like a movie playing in my head,  I see my parents in the backyard playing with our children.  I walk outside, saying the words while they look at me with disbelief.  I return to the house, get the phone and go to the corner of the yard to call Jon's parents, who were in Florida at the time.  It was by far the most difficult call I have ever made.  I could barely utter the words.  In those early moments, when our world came crashing down, our parents, in their own tailspin, started holding us.  Jon's offered to call his siblings and quickly made plans to return home.  Mine took over caring for Maggie and Tom, while we grappled with what was ahead...still so much unknown.  Although my parents left in the wee hours the next morning to return home, they held me close and promised to be back whenever and for whatever we needed.  The week that followed was a whirlwind.  Jon's parents drove us to the city for doctor appointments while mine made arrangements to return to Long Island to care for the kids during my stay in the city for Jon's surgery.  From that first moment, our parents have never let us go...they are steadfast; cooking, cleaning, repairing, listening, praying, encouraging, questioning, guiding.  As parents, Jon and I never want to see our children in pain.  I can't even begin to fathom the agony our parents felt and continue to feel each time we face yet another obstacle...surgery, chemo, seizures...  Yet they never make it about them.  They continue to support us... Their love is infinite.  Our parents, with their 95+ years of marriage between them demonstrate how to be strong as partners and parents.  I don't think there will ever be enough words to thank them for the many gifts they have shared with us.  I just hope they know how much we love and appreciate them.  We are truly blessed to have them in our lives.

Petal

It was date day...the term we affectionately call our trips to Jon's doctors.  I drove to the city while Jon slept and drove home while he slept...keeps me from having to share the radio!  In between, saw his hero, Dr. Gutin, who seemed very pleased with the surgery and how Jon is doing.  We also saw Petal, his nurse, who gently removed 46 staples and several stitches from Jon's head.  She is new to us, joining Dr. Gutin after Patsy, his previous nurse, retired.  We loved Patsy.  She was kind, gentle, honest and thorough.  Petal is similar.  She was a nurse on the 7th floor for four years, Jon's post-surgical home after both surgeries.  We talked fondly about the other nurses (especially Lisa and Mary Ann) and staff we encountered.  We also chatted about her decision to switch positions to join Dr. Gutin and her enjoyment of following patients for a longer period.  Before we hugged good-bye (she's a hugger) we had one question for Petal, " How do you do this job everyday knowing that some cases are hopeless."  Her answer was simple, "We do it for you."  It was one of those heart in my throat moments.  We could only say thank you.  Thank you for showing up.  Thank you for sharing your skill.  Thank you for doing it for us.

Dealing With It

I saw this quote and it made me think of my sweetie.  6+ years and counting.  Some days tired, some days sad, some days scared, some days great.  Everyday dealing with it!!!  Keep dealing with it, Jon!  You're worth it!  We're worth it!!!  Love you more than you know...

"Dealing with it is the operative word.
I found myself at seven years not battling it.
Not struggling with it.
Not suffering from it.
Not breaking under the burden of it, but dealing with it."
- Michael J. Fox referring to his Parkinson's Disease
Barbara Walters interview, 20/20 December 4, 1998

Perspective

So much about life is perspective.  Perspective evolves...time, place, emotion playing a major role.  Jon and I have had many conversations about this, especially after spending time at Memorial Sloan Kettering Cancer Center.  Seeing people in wheelchairs, with IV poles, and masks covering their nose and mouth is part of the norm.  There are elderly and young, parents, siblings, spouses, children and more.  There is no discrimination.  It is a sobering experience.  We maintain perspective about how blessed we are when considering the journey of so many others.  However, our perspective sometimes stirs feelings of guilt.  Guilt because Jon is surviving.  Guilt because he had a tough day.  Guilt because we complained...  We alleviate that guilt by qualifying what we feel with phrases like, "I know it could be so much worse" or "There are other people who have a much tougher fight".  True?  Absolutely...  Maybe when we consider our perspective, we should do so without judgement.  At any given moment we may have the perspective that life is a  struggle.  The gift we give ourselves is to accept that perspective, knowing we won't stay in that place long.  No qualifications.  No self-recrimination.  A moment of perspective that will pass, replaced by another and another and another.    

In the Moment

Jon is a rock star!  He is ready to go!  Bring it on!  Well...let's revise that thought.  In his mind, Jon is ready to tackle the world.  HIs body, however, has a slightly different plan .  We tested his endurance today and, after visiting with a friend, making breakfast, showering and shaving, he crashed...flat down on the couch.  We had a good laugh as I reminded him he just had brain surgery a week ago!!!! Hello!!!!   Isn't it often true that we push ourselves beyond our limits to accomplish a goal, meet a deadline, prepare for what's next.  Sometimes that's a good thing, but sometimes it's important to slow down, breathe, appreciate the moment, be thankful, rejoice.  As you may know from reading earlier blogs, Jon hated chemo.  Quite honestly, it sucked.  We both know it's coming, maybe a week from now, maybe several weeks from now.  But...in this moment it is not a part of our lives.  In this moment we have short walks hand-in-hand, breakfast together and extra snuggle time.  We have each other.  So rather than looking ahead, anticipating, let's practice every day to be in the moment, rejoicing because it's a gift.  Let's open and appreciate that gift before it passes by.  It won't ever come our way again...

Roller Coaster

One week ago today, Jon had his second craniotomy.  As we move forward in his recovery and prepare for chemo, I started thinking about the roller coaster we have been on since I heard the words "Your husband has a mass in his brain".  Jon didn't know.  He was still in the MRI.  I told him.  I told our families, friends, coworkers, insurance companies, doctors...over and over, "Jon has a mass in his brain."  Our daughter was five, our son was two.  A week later, in a little conference room at Memorial Sloan Kettering Cancer Center we waited for the neurosurgeon to update us after Jon's surgery.  I hated that room.  It was small and stifling.  Once the doctor spoke to us, I cried.  I didn't feel relieved, I felt depleted.   I will never forget those moments, just like I will never forget two and half years later when the oncologist said the tumor grew and it was time to start twelve months of chemo.  More tears, more phone calls.  Feeding him chemo pills and anti nausea meds.   Searching for foods he could stomach.  Picking up shattered pill bottles when he smashed them with a bat after his final round.  A victory!!!  Then, a shrunken tumor and eight blissful, months of no seizures.  Some days went by without us even thinking about the tumor (we actually had a conversation about it).  In an instant that changed.  Jon could barely get the words out, "I had a seizure".  He cried.  I cried.  We knew.  This past September's MRI confirmed new growth on the tumor and the next several months were spent watching and waiting.  Maybe that's why we felt such relief when we could finally act.  Maybe that's why this second surgery was a blessing.  Action gives us a sense of control over the uncontrollable.  And everything about this brain tumor is uncontrollable.  A friend said an interesting thing to me earlier this week after Jon's surgery.  "Not everyone understands that the hard work happens when you get home.  They go back to their lives and you continue to live this battle."  She was right...We are our truest selves at home, safe and secure, hidden from others.  We put our best foot forward when working, playing, socializing.  The tough stuff happens behind closed doors.  Fear, anger, sadness, guilt... Jon and I both feel those things.  We also feel joy, love, hope, determination...  So yes, this is a roller coaster and yes, some days it is hard.  There are many things I wish I could change, but I know for sure, I would never want to ride this roller coaster with anyone else but Jon.  When he is low I hold him and when I am low, he holds me.  We laugh together, cry together and fight together.  We said "For better or worse, in sickness and in health" on July 31st, 1999.  We have been tested, we have persevered and we will continue to ride this roller coaster together, hand in hand for eternity.  Put your seatbelt on...it's going to be a bumpy ride!

Angels Among Us

See the picture to the left...that is my angel.  He does't have wings or a long white robe, but he has a halo of 46 staples encircling the right side of his head. And that smile...isn't it beautiful!  Each day Jon's glow grows just a little more; the smile is bigger, the eyes are brighter, the laugh is louder...  All these steps forward are because our angels allow us to focus on Jon's healing and recovery without worry.  They show up with dinner, help with the kids, send a card or text, cover for us at work, pray for us to have strength...the list is endless.  Our angels are many, near and far.  They may not have wings or long white robes either, but we know they are here among us.  Our angels are the anchors that hold us steady...they are the presence of God in our lives.

Ready For the Possibilities...

This year Jon and I will celebrate 16 years of marriage and 22 years of being a couple.  He has always amazed me...with his talent, kindness, faith, generosity...  and of course, humor!  Jon (who will soon reclaim this blog so I stop writing metaphors and sappy crap) was apparently cracking jokes throughout his surgery, which was possible because he was awake while they worked on his tumor.  One of the neurosurgeons said Jon's awake craniotomy was the most fun one he has ever done.  Somehow I am not surprised by this.  Jon's got a killer smile and can invigorate you with the warmth of his laugh.  That laugh is in short supply these days as he focuses on the business of recovering.    Someone told me today to be thankful for all the things Jon has, eyesight, mobility, speech...  Without a doubt we are thankful for those blessings and then some.  But it is important to recognize too, that the impact to our daily lives is significant.  That doesn't mean we have a pity party, but rather, we long for the days when playing catch in the backyard or a walk around the neighborhood isn't exhausting.  When family dinner at the table and sleeping in bed are the norm.  When Jon's laugh fills the house...  So today we continue to count our many blessings and embrace the emotions that accompany this process, without judgement and with the knowledge that tomorrow is a new day full of possibilities.

One Day At A Time...

Wouldn't it be nice if life turned out the way we want it to?  We could get what we want when we want?  The sun would always shine and the clouds be only providers of shade rather than darkness.  Unfortunately, that's not the case and despite all the blessings we have in life, there are days that just bring us down.   Jon is happy to be home, but as you may know, sometimes it's hard to be the patient and patient.  The reality is his brain surgery was less than a weak ago, so all the symptoms he is experiencing are typical; fatigue, weakness, loss of appetite, mood swings...  But, they aren't typical for Jon.  So here we are celebrating his homecoming, but recognizing that the hard work has really just begun.  Healing, patiently, without expectation.  Being strong without judging weakness. Accepting help without feeling needy.  And of course, knowing that all these things are temporary and soon, we will pay forward the love and support we are receiving.  For now, we will take it one day at a time...

There's No Place Like Home

In the Wizard of Oz, Dorothy went through a journey before she clicked her heels together to return home.  She made friends along the way, faced many challenges and learned a lot about herself.  Our journey at MSKCC was similar... each day held moments of joy and sorrow, faith and fear, exhaustion and energy.  Those moments were shared with staff, patients and families alike.  Each person we met had their own story, their own journey, their own moments.  Leaving Sloan today was a step forward for Jon in his recovery.  We were excited to step outside in the sun and celebrate this beautiful day.  At the same time, it was hard to say good-bye to the people who so quickly became like family; Jon's lively roommate, Frank, his nurses MaryAnn, Lisa and Ruth, the Mom and Dad caring for their adult son, the daughter there for her Dad...the list goes on and on.  While the world outside was happening, our 7th floor was it's own world and we were all a part of it; sharing stories, offering support, working towards a common goal of going home.  Today was our day to go home, saying good-bye with the knowledge we wouldn't cross paths with most of these people again. Yet in our dark hours, they were there, living it with us, that makes them family.  With hugs and well-wishes we left our temporary home holding each of member of out new family in our hearts as we returned to our beautiful children, so happy to see their smiling faces.  Jon was quickly surrounded in their love and as you can see in the picture, there really is no place like home...

Connected...

Today was a progressive day.  Jon showered, did three laps around the floor and had a few visitors.  He had successful OT and PT evaluations.  In between naps, he looked at messages left by friends and family who offer their love and support.  Those words are stronger than any amount of medicine.  Understanding that he is not alone on this journey allows Jon to be strong when he is able and rest when needed, knowing others will carry him.  One of my most challenging moments today was realizing that the next time I hug my son, Thomas, he will be eight.  I felt a little sad knowing I won't be with him when he wakes up on his birthday.  Then I unwrapped the gift of knowing he will be surrounded by love on his birthday, both near and far.  My love is not contingent on being in his presence, but flows from me to him with our heart connection.  That is true of Jon too.  Though many of you may be far away or not seeing him on a daily basis, your heart connection is felt with every fiber of his being...the love, energy, faith and positivity.  So Happy 8th Birthday tomorrow, Thomas and Happy Homecoming tomorrow, Jon.       I hope you both continue to feel the heart connection of those who love you, near and far. xoxo

Winning!!!

Jon watched the NY Rangers win their first playoff game last night from his recovery bed in the PACU while he celebrated a win against this brain tumor.  The neurological team is amazed at his alertness and overall recovery.  When I arrived this morning, he was groggy, but off all IV's and able to get up and walk for the first time.  He is managing his pain well and enjoyed a delicious lunch after visiting with his parents and sister.  Jon survived yet another  dreaded  MRI and is taking occasional naps as he works to regain his strength.  The best part for him is seeing all the loving, encouraging, supportive messages delivered by all of you over the past several days.  A few at a time he is reading the notes which help him find strength and courage to continue this journey.

As his wife (or "first wife" as he likes to call me) I dreaded going through this with him again...the anxiety, fear, planning, caregiving.  It's all overwhelming at times.  Here's the thing though, love and support gives me the strength to get through it.  Those of you who know Jon already know he is a sweet, kind person, whether it be at work or at home.  What you may not know is that he is all that and even more as a husband and father.  After almost 16 years of marriage, it just keeps getting better.  Before the surgery, despite being tired and anxious, he made time to build lego and play baseball with Thomas, watch the NY Mets and snuggle with Maggie.  He even got me a gift card for a reflexology foot massage.  He cares genuinely and deeply.  That's why he has the support and love of so many...because he truly gets it...life is about so much more than him and this brain tumor.  It's about living, loving, laughing and celebrating every blessing, even the ones that may initially seem like they're not.  So find time today, right now, to celebrate and unwrap the amazing gifts life gives you!  I love you Jon! Thanks for choosing me!

Today's the day...

Well here we are, the day of surgery.  This is Jon's pre-op pic after getting up at 3:30 to get to MSKCC by 5:45am.  He was in good spirits the whole way, mostly concerned about how he would get the score for the NY Rangers playoff game tonight!!!  He made all those he encountered laugh and had plenty of smiles to share.  Around 7:30am they wheeled him away from me into surgery.  This time was so different...no tears, just clarity in knowing surgery was the right thing to do.  After many hours of waiting, I got to meet with the doctor who said he removed 80% of the tumor and Jon did great throughout the surgery, remaining strong and responsive when they woke him up to check his functioning.  I was pleasantly surprised  (and shed a few tears) when I saw him in recovery, head bandaged and all hooked up to IV's.  He was talkative, sharing his incredible humor that had the operating room staff laughing.  There are no words to express how grateful we are to the staff who cared for him and family and friends who have reached out to us.  Now the recovery begins...going in to see him again in a little while and sharing all the love from you!  More to come...

Bring it on!

It's late, so I'll just ramble about my day. This morning, we made our way to Manhattan for the functional MRI that I spoke about in the previous post. In 2009, I was in such a different place both mentally,and emotionally. I had anxiety and panic attacks in the MRI machine.

Today was very different. I was in a very positive mood and ready to tackle the day. The first thing that was done was to place these round stickers on my head as you see in the photo above. They are utilized by the neurosurgery team with regard to mapping out my brain. They strapped me into the head "cage" thingy, which is tough because it is very close to my big, Italian nose!. I have learned from previous experiences to ask that the mirror attachment be set-up. This allows me to see out of the machine, which makes it a little more tolerable. I can then see the technicians and radiologist on the other side of the glass. The technician also put on these large headphones so I could hear her giving me directions. These headphones were so big, and they squished against my ears and it became more painful as the test continued. Soon after the test started, the functional section began. First, I was told to wiggle my fingers and move my tongue around with my mouth closed. She had me repeat this 3 or 4 times. Next, I was told to think of words that started with D, then, T and a couple of others. Finally, I was asked to think about different types of fruit and then names of countries. When I followed these directions, different sections of the brain apparently lit up on their screen. This information is then used by the Neurosurgeon during surgery to protect me from permanent brain damage. When this was completed...the technician let me know and told me that the remainder of the test would be starting soon. I immediately asked if they could take the headphones off. I felt so much better when they agreed. During the remainder of the test, I was allowed to fall asleep, which I did from time to time. I remained very calm and I was very proud of myself when it was finally over. It was a total of about 2 to 2 1/2 hours in the machine.

Soon after leaving the hospital, Dr. Gutin's office called to notify me that I need to arrive tomorrow at 5:45am....ugh! I'm in great spirits and totally ready to move forward. I can't believe calm I have been. I think it has been great for the household, because anxiety is easily picked up on by the family. So, here I am, ready to get some sleep before heading in. Mom and Dad just arrived home from Florida and I'll get to see them after surgery. The next several posts will most likely be written by Sue. Thanks for all of your messages of prayers, love and support. BRING IT ON!

Final Preparations

It's Sunday night and I expect the next 3 days will be physically and mentally draining. My Anxiety has varied from having no appetite for a couple of days to feeling like everything is normal. In the next 2 days, I will be trying to tie up any loose ends at work. Our NYSSMA festival is approaching and it's hard for me to give up control for one of our largest events. Additionally, I have many teacher observations to complete and I worry about them getting finished. I've asked my colleagues for help, and I know it will get done, but I don't like giving my responsibilities to others. The truth is, the Music and Art Department will continue to function successfully without me and the work will be there when I get back. I have a wonderfully talented staff and secretary who will help keep everything running.

On Tuesday morning, I will be going to see the woman who has been cutting my hair since I was 9 years old. Lisa has known the family for a long time and she is a great person. I have asked her to shave my head for me in preparation for surgery. It is not necessary that I shave my head completely, however having experienced this surgery before, it would have been easier had I done this. Also, My Mother-in-law will be flying in to help us with the kids as well as for when I get home. We are so lucky that she is able to come and be with us.

On Wednesday morning, Sue and I will be driving (Sue does the driving!) to MSKCC for a functional MRI. This is an MRI which will include neurologists asking me to complete tasks during the test. For example, they might ask me to think of words that start with the letter "M". As I do this areas of the brain will "light up" on the scan which will tell them what area of the brain is being used. It basically creates a map of my brain (the location of certain functional areas varies from person to person). During the MRI, the neurologists will also place several round sticky things around my head, which will aid the surgeon with regard to the mapping. Mom and Dad will also be flying in from Florida to be with us. This is the 2nd time I've shortened their snow-bird time!

Finally, on Thursday, it will be time to head back into Manhattan for what we have all been waiting for. Although I do not have the exact time of the surgery yet, Dr. Gutin's nurse has told me that she is estimating that I will have to arrive around 9am. Following the surgery, I will be taken to the PACU, which is a post surgical intensive care-type of unit. I will have little contact with family while I am there. I will remain there overnight and if all goes as it did 6 years ago, I will be taken once again to the MRI machine for a follow up scan in the morning. I expect that soon after, I will be moved to a room. I will continue my recovery in the hospital, most likely until Monday, April 20.

Return of the Blog

I apologize for the length of this post, but I want to bring you up to speed.

Here I am...Easter weekend, 6 years after my initial surgery, preparing for the next step in this journey, another brain surgery on April 16th. As you may know, almost 3 years after my initial surgery, I completed a year of chemotherapy to slow the continued growth of the tumor left behind after my April 9, 2009 surgery. The growth was causing multiple sensory seizures each month. Much to the dismay of my neurologist, no amount of medication was controlling the seizures, even a cocktail of three different ones. After one month of chemo, the seizures slowed and soon stopped altogether for 8 months after the chemo. Let's get real about chemo for a moment...the stuff SUCKED!!! Although my oncologist said 95% of people handle this kind very well, I was not in that percentage. The weeks on treatment were horrible and I didn't think I would get through all 12 cycles but I DID IT!!! My celebration after taking the final dose was taking the empty bottles outside and smashing them to smithereens (the table they were on too)!!! Tears were definitely involved! The next MRI showed significant shrinkage of the tumor, which was unexpected. Unfortunately, I didn't make it to the 12 month seizure-free point where the neurologist would start lowering my meds. That was a huge blow... Over time, the seizures which were now limited to just the left side of my face were increasing in frequency and for the first time ever, waking me up at night. Another new drug added to the many I was already taking did nothing for the seizures, but made me exhausted,sleeping almost daily for hours at a time.


This past September, less that 2 years after completing chemo, my MRI scan showed tumor growth. My oncologist, Dr. Nolan, recommended chemo again and possibly radiation. I told him I was not ready and he agreed to wait, ordering another scan 6 weeks later. Then another 6 weeks after that. Both showed no new growth on the growth. So we waited... This March, my MRI showed more tumor growth and I knew the chemo/radiation discussion would begin again. Dr. Nolan asked me what I would like to do. I answered, "neither". He agreed to hold off on radiation at my request, sent an email to the neurosurgeon (an unlikely possibility) and planned to move forward with chemo. Much to my surprise, Dr. Gutin agreed to a consult the following week. Let me be clear, I idolize Dr. Gutin. He is a renowned surgeon and the most caring, compassionate, and positive doctor I have ever been around. His sense of humor is calming and encouraging. Dr. Gutin is my superhero...truly an angel on earth. As strange as it may sound, I would much prefer surgery to any other treatment. Although the recovery from my first surgery was very difficult, there is something psychologically calming about removing something that does not belong in my body. Unfortunately, there is no way to remove the entire tumor because it is attached to my motor cortex, but surgery remains the best option for me. Sue and I met with Dr. Gutin and he agreed that surgery is appropriate, showing us the most recent MRI scan and describing his plan of attack. You can see white mass of tumor in the scan of my brain on the left side of the photo above. We discussed dates, ultimately scheduling April 16th with 6 months of chemo to follow...

So this is where we are right now...I anxiously await, trying to get as much planned and completed at work as possible. And most importantly, get my children, Maggie (12) and Thomas (8 on the Sunday I am in the hospital) ready for this challenging period. That's the toughest part...

I am so positive and ready to move ahead. This time around is so different....I am so different. I am stronger mentally and physically and I know what to expect, and I am not afraid.

More to come....