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....