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....

Chemo update

I started with the first dosage on Friday night. Throughout the night I suffered with reflux. I'm sure it was due to the fact that I have to take he medicine on an empty stomach. As Saturday went along, it did improve. A FB friend suggested Watermelon because apparently it neutralizes the acid. Surprisingly, Sue found watermelons at Stop and Shop. Even more surprising was that they taste good. It definitely helped the situation.

Tonight is the third of five dosages. After the 5th, I wait 23 days before starting the next round. So far so good with side effects.

To add to the fun, I seem to have a sinus infection. Gotta love it. :-( Sue and I will go to the Doctor tomorrow because she has it too.

Consubstantial

Consubstantial: of one and the same substance, essence, or nature.

Those of you who are Catholic know that there have been changes to several of the prayers in the mass. We have been told that the changes are a more accurate translation from the original text. When I first read the changes, aside having a negative attitude to the changes, I was most disturbed by the word, "Consubstantial" which is now a part of the "Apostles Creed." As I started to recite the new translation at mass I decided to find out the definition of the word instead of being annoyed by the change. I found that he word is an interesting one and I found that kind of like it. I began trying to use incorporate it into my vocabulary. It became sort of funny as I did, often making Sue laugh of shake her head at me.

One of the uses of the word has occurred when comparing my kids behavior to mine. When Maggie or Thomas do or say something that resembles my personality or behavior, I will say that the two or three of us are consubstantial.

The other night was a difficult one for me. I felt like depression had then control during the day, but I was managing it decently. While skimming through the TV channels to find something to watch, I found, "Mrs. Doubtfire," one of my favorites. Maggie and I were sitting together and I immediately told her what a good movie it is and we should watch it. The movie had just begun. I hit record on the DVR so we could have it for the future. We enjoyed watching the movie together. Maggie especially enjoyed Robin Williams' jokes, which she now repeats throughout the day!

At the end of the movie, Robin William's character is in courtroom fighting for joint custody of his children, he speaks the following monologue:


"the moment I looked at them,
I was crazy about them. Once I held them, I was hooked. I'm addicted to my children, sir. I love them with all my heart. And the idea of someone telling me I can't be with them, I can't see them every day..It's like someone saying I can't have air.
I can't live without air,and I can't live without them."

Although the monologue had to do with divorce and custody, I and I think Maggie connected this to my serious health situation and the unknown to come. At the end of the movie, MAggie began crying. She shrugged her shoulders when asked what she was crying about which means she didn't want to tell us. I just held her and we hugged as hard as possible. Not only was she crying, but Daddy became very emotional as well. At that moment, we were sharing the sadness, the fear and the question of why this has to happen to us. Our connection at that moment was as strong as ever and yes, we are consubstantial.

Wow! It's been a LONG time!

I'm not really sure where and how to begin again. The last post was July of 2009. I'm not sure why I stopped blogging then, but I think t that point I was feeling relatively better both mentally and physically at that time. I had a few clean MRI reports and was starting to move on.

At that time, I was in the middle of a application/interview process for the directorship I now hold. The previous director, Dave Cerullo had announced his retirement in the spring and this is a job that I had wanted for a while. The timing seemed bad at the time since I was in the middle of my recovery, however I felt I had to move ahead. The process was difficult. Thee were a couple of rounds of interviews and then a lot of waiting. It was agonizing to say the least. In the middle of August I had to start the Marching Band season as if I was still in my teaching position. It was band camp week which is a lot of time and effort. I remember being there that week and feeling out of place. I didn't feel like a member of the tam and yet nor an administrator. The unsettled feeling was difficult. By the end of the camp, I just wanted an answer whatever it was...I had to move on and prepare for I would be doing. Finally the call cam from Ross Goldin as I was pulling to the drive through window at McDonalds with my children of all places. I would be recommended to the Board of Ed as the new Director of Fine Arts and Music Education. I met with Ross and the Superintendent to begin the transition. We had already planned in January (before diagnosis) using one of my parents time share weeks to go to the Massanutten Resort in the Shenandoah valley of Virginia. I had been looking forward to this trip especially since the surgery. Since it was late August and I had a new job, I was torn about going with so much work to be done. I decided I would go with the family and half way through the week fly home to begin working. Our friend and Sue's supervisor would fly down to be with the family for the emender of the trip. We loved the resort so much that we decided to purchase a week there. We would have our one week vacation for the rest of our lives and pass it on to our children.

The first two and a half years of the job have been great. I'm doing exactly what I want to be doing and I think I am doing a good job thus far.

Throughout this time, my periodic MRI's have been clean and my anxiety about the scans has diminished greatly. Since the surgery I have experienced whatI would learn is sensory seizures. These are episodes of numbness and tingling that go through the left side of my body. As they continued and became more intense, I decided to see a local Neurologist. He prescribed an anti-seizure drug that should help the seizures. The drugs did not seem to be helping. At one of the scans we spoke to the Neuro-oncologist about the issue as we have done in the past. This time he suggested seeing a colleague of his in the city who is a seizure specialist. We made the appointment and went to Manhattan to see him. Dr. Avila increased the medication and in subsequent visits added another drug to help sop the seizure activity. To this date the meds have not worked at all and in fact the seizures have increased in frequency and intensity. Dr. Avila said that there was not much more he could do and that we should seek treatment of the remaining tumor cells. The most recent scan revealed growth in the tumor. We new that this would occur, it was just a matter of when and if the cells would change into something more serious. I had hoped it wouldn't have happened so quickly. There is no way to remove the entire tumor in a brain due to the damage it would cause. In the appointment with the neuro-oncologist, he suggested treating the tumor with either chemotherapy, radiation, or a combination of the two. We discussed the pros and cons. I told the doctor that I really was not interested in radiation because of permanent side effects that may occur. The decision was to start a chemo regimen.

The side effects of this drug, temodar, seem to be minimal compared to others, however everyone's body is different. I now wait for another scan which will be used as a baseline for future scans to find out if the drug is shrinking the tumor. The goal is to shrink it and hopefully stop the seizures. We would then look to come off of the large amounts of seizure meds.

There is certainly anxiety beginning this treatment. I have tried to limit the "pity parties" b staying positive and even changing the attitude to one of anger and determination to beat this tumor into submission. It is difficult to maintain this and there is often sadness and negativity. This is often replaced when hearing stores of others especially children who are going through much worse health situations that I have.

The family and friend support continues to be overwhelming and very helpful. I feel the love and I know the pryers continue and are working.

In February of 2009, Maggie was about to turn 6. Even back then she displayed an obvious intelligence and awareness beyond her years. She knew something was going on and at some pint we had to tell her that Daddy would be having surgery on his head.

Since then, she continues to become more aware of the world, life and death. She developed much anxiety which showed itself in major melt downs and other emotional breakdowns at home. We decided to seek the assistance of a therapist to help her work through her issues. This has made a huge difference and although there is still anxiety about Daddy's health, she has developed some strategies for dealing and communicating them. She also has a huge support network in school and church which has been huge.

So, I guess that's where we are. I thank you for your continued support and feel free to share the blog with others. this is much easier than repeating the story. I am not particularly private about my situation, but I want people t have accurate information rather than rumor.

Until next time...