3 Months Later...

This very moment 3 months ago, I was laying in my hospital bed in the intensive care/recovery area of Sloan-Kettering Hospital in Manhattan. I had bandages covering most of my head, IV attached, catheter, and God knows what else I was hooked up to. I was not allowed to eat solid food and visitors could only come in for a short amount of time. I had little or no feeling in my left arm, hand and the left side of my face. An amazing surgeon and his very skilled team had just hours before opened my head and skull and removed 95% of a 7 centimeter tumor that had been growing in the frontal lobe of my brain for at least 10 years.

As I think about these past three months...so much has happened. It seems like years have gone by since first finding out that I had this little issue! I think of all of the assistance I needed getting out of bed, showering, getting dressed and many other every day routines. I recall those horrible headaches in the first couple of days post surgery that I thought would never subside. I remember having big sister, Laurie, here to help me recover. I remember the terrible days of feeling "impending doom" as Dr. Carlson calls it. The feeling that at any moment you are going to die from any number of imagined ailments.....blood clots, pneumonia, heart attack, seizures, cancer, etc. The two trips to Mather Hospital are days I would rather forget. Not to mention the debilitating days of anxiety and depression.

But, I also remember all of the amazing things that happened along the way. My amazing wife, who has taken the vow, in sickness and in health to heart and has been there for my every need. The amazing support from friends, family and people I didn't even know. The cards, letters, gifts, visits, prayers from around the world. These small gestures are what got me started on the road to recovery. It helped me to feel cared about, valued, loved and that I had an impact already on this world and that I had more work to do. In a short amount of time, I was able to go back to work and get my students ready for their concerts. I was able to march in the Memorial Day Parade and returned to work full time before the end of the school year. All of these small steps that I have made has added up to tonight. Tonight I completed a 3 mile walk/run as well as abdominal exercises which is the exact routine I had been doing prior to the surgery. I am back to doing all of the things I had done before: Mowing the lawns, cleaning the house, playing with and enjoying my children. Loud noises and intense activity in the house no longer sends me over the edge looking for a closet to hide in. I have taken my life back and almost every day is a step forward.

I still live every day knowing that I have a brain tumor and there is a lot of uncertainty about the future. How will it grow back, how quickly and will I need more surgery? Will I need chemo or radiation? Will the cells change from benign to cancerous? But as my wife recently reminded me, we all live with uncertainty in our life. Anyone of us can have a life changing event at any time, but most of us don't lie awake at night worrying about it. I have made great strides in returning to that mindset of living my life and not letting the events of the past 3 months define me in negative ways. I will however use this experience to help others in some way.

We recently retuned from a trip to Fredonia and Rochester, NY. In Fredonia, I was able to attend my niece's High School graduation. Although the trip was tiring, I was proud that I could be there with my family to celebrate this great accomplishment. In Rochester, we visited Sue's family. It was great to spend time with everyone. I was concerned that seeing everyone would be overwhelming as many of them had not seen me since before the surgery. Instead, everyone just focused on how happy they were to see me rather than focusing on the details.

There are still bad days, however they seem to be few and far between. I'm looking forward to a fun and restful summer and I will continue to become more active in everyday life. On the 31st, Sue and I celebrate 10 years of marriage and although I kid with her about the coincedince that the tumor also started 10 years ago, I wouldn't have come this far without here love, support and shoulder to cry on. I hope the next 10 years are a little less exciting! Happy Anniversary and I hope you like your present!

Happy Father's Day.

It was a pretty good week. For the first time since before my surgery, I got back on my treadmill. It was a little emotional at first. I had spent so much time on that machine for over a year before the surgery. I had lost 65 pounds and was in the best shape of my life. I had so much self-confidence and felt so healthy and alive. As I got closer to March, I could do less and less on the treadmill. My 6 mile runs were down to 3 miles and even that was a struggle. I had started to tell myself that something was wrong, but I was scared. As I wrote on this blog months ago, my fear was a degenerative disease like ALS that would slowly take all of my physical capabilities away.

So I started very similar to how I started in October of 2007...very slowly. I walked 2 miles. I added some light running after a couple of days. By the end of the week, I was too tired to go on. I got back on tonight and again went 2 miles in about 27 minutes, but this time 8 of those minutes I ran. It feels good and I hope to continue to get back into shape. I feel like I need to get my body back into the best shape and health as possible so that I can fight whatever battles come my way in the future.

It was a great Father's day. On Friday, Dad and I went to the Mets game. It was my first time visiting the brand new Citi Field. I had told Sue months ago that I had hoped to go to the new park with Dad. It is a beautiful building and we had a great time and they actually won! On Sunday, we went to church and breakfast at the diner. I was thinking back the other day to Maggie and Thomas's birthday parties. Maggie's was before finding out about the tumor and Thomas's was after the surgery and I felt terrible for both events. I was not able to enjoy their celebration and it really bothered me. I'm thankful that Father's day was much better. We had a fun day and I felt great! Happy Father's Day to all. Never take for granted the time you have with your children. Make every moment count!

Relay For Life.

Soon after my surgery, a former student of mine, Pam, contacted me to offer her thoughts, prayers, and support for my recovery. She also reminded me that she is employed by the American Cancer Society and one of her responsibilities is to organize and execute the relay for life events that take place in our area. It's a huge job to put this event together and Pam runs several of these every year. This year she took on one of these events right here in Selden, at Newfield High School. Pam told me about it and that there would be a survivor's dinner prior to the event and that the ACS views me as a survivor and I would be invited. At the time I was excited to be included. The event raises money for the ACS by having teams of people collect money from donors and then each team walks around the track for twelve hours straight.

The event was to take place this past Saturday evening. Saturday was a bit of a down day for me. I had a dull headache and didn't quite feel my best and the thought of attending this event wasn't too exciting. I wonder if there were some underlying issues inside of me as well that was keeping me from going. Although I had a good report the other day from the oncologist at Sloan, I had a really hard time being around all of the patients. I felt quite overwealmed by all of the sick people I saw.

That evening, as we sat in the den, we could here lots of noise from the High School, which was the Relay for Life event. Sue decided that after she put the kids to bed, she would stop over and show her face at the event. I told her that I would go, but I didn't want to go alone. We quickly decided to put the kids in the car and go over. There were hundreds of people there, walking the track, making purchases from the vendors and listening to the live band. I quickly found Pam's mother and then Pam who were very excited to see me. I also met some other friends and former co-workers. Thomas and Maggie loved running around the track. From what I understand the event raised over $70,000, it was amazing event. I can't believe I almost missed it. Thank God, Sue gave me a little kick in the butt!

Odds and Ends

Remember the tingling symptoms that I had been experiencing over the past week and a half and suddenly they disappeared almost entirely on the day of the MRI? Well, I was doing some more research on the side effects of the medications I am taking and I stumbled upon the wikipedia page of side effects of the anti-seizure medication Keppra that I am on and low and behold I read "pins and needles in the extremities". HELLO? This information would have averted a lot of worrying about a week ago! Well at least I know that I'm not crazy....well about that anyway!

So far, this week has been very good. I started working nearly a full day minus about 30-40 minutes. I have been very tired in the evening, but the days have been going well. Tuesday was the only day so far that I didn't feel great. I had a slight headache and felt some dizziness. I also had difficulty with noise and a lot of activity. I decided to visit my parents house after work and I used their jacuzzi tub and it was very helpful in making me feel better. As I've told a few people this week, I feel like my body is a few weeks behind my head. I have a lot of things that I want to get accomplished, but physically, my body isn't ready to be pushed as much as I want to push it. The endurance isn't coming back fast enough for me and it's frustrating. I will keep working on patience!

It's been a difficult week in the house, because Maggie has been so sick. She has a very bad tonsil infection and I have a feeling they're gonna have to be taken out. Maggie is very demanding of our time and attention on a normal day and it's worse when she's sick. Her mood is also very difficult to deal with. Sue hasn't been getting enough sleep and I've been tired from working full days so other than happy-go-lucky Thomas, the house is pretty crabby.

Tomorrow is our music honor society's banquet and I'm looking forward to seeing all of the kids dressed up and having a good time, however I'm not sure how long I can stay given how tired I've been. Friday is the last day of classes and I can't believe this school year is over. The years always seem to go so fast, but this one especially because I was out of work for so long. It's always hard to say goodbye to our seniors (most of them!) but this class particularly because they were such an intelligent and talented class. Several of the students will be going to music school which always feels like a compliment to our music staff in the district. We must have made a big impression on any student who decides to follow in our footsteps. Others are going to some of the country's best universities and service academies. Best of luck to all of our seniors, we are so proud of all of you.

The First One is Always the Toughest.

This week ended up being very good. As the week progressed, I started going to work earlier each day and found that I was able to handle more and more. As thursday got closer, I thought my anxiety would increase in preparation of my first check-up MRI. Thursday morning came and I found that my mood was very good and I felt strong. I didn't notice any of the numbness I had been experiencing all day. Because my body didn't want me to get too excited, it decided to reward me with a nasty head cold which made me sneeze about 50 times at work on Thursday. I wondered how I would survive the MRI with my nose running, sneezing and coughing while I was supposed to remain still for 40 minutes or so. I was actually angry with my body much like I was in March after being diagnosed. How could my body after not having a single cold the entire winter allow this to happen now.

On our way to Sloan in Commack, we stopped at our church where father Chris prayed with us and anointed me. Leaving there, I felt even better about my being able to handle the MRI. Upon arriving at Sloan, I took some prescription medication to hep avoid any panic attacks in the MRI machine, but I'm pretty sure that I didn't even need it, because I came through with flying colors. Sue had informed me a day or so earlier that the people at sloan told her the test would take about an hour. I was really worried about that initially. When I met the technician, he told me it would only be about 40 minutes....big difference to me! The technician was great in keeping me informed of the progress during the test and before too long it was over...I had done it!

The next concern were the results of the test. Because we couldn't get an appointment with Dr. Nolan for the following week, we had to call on Friday to find out the results. Renee, Dr. Nolan's nurse finally called us around 4:30pm. She informed us that the MRI looked fine and that there was no change to the tumor. She said to monitor how I felt this week and they would decide if I needed to keep our appointment with the doctor.

On Friday, I decided to go to our family doctor to make sure that what I had wasn't any more than a cold. The nurse practitioner, Scott was glad I came. He said he thought it was just a cold, however he was still going to put me on strong anti-biotics because if it became an infection, it could be dangerous because of the short time since the surgery. I was very glad I went, and even more so on Saturday, when Maggie was diagnosed with an ear infection, possible strep throat and maybe even mono! I think these kids are trying to kill me! :)

At this point, I feel great..minus the cold. I feel ready to work a full week and maybe even start exercising more. Thanks for all of your prayers and concern. Have a great weekend.

Pushing Through the Week

The week has progressed relatively well thus far. Monday was an amazing day. I had lots of energy and I felt as good as I have felt since the surgery. My mood was very high and I was very positive. In the evening, I was even laughing for no apparent reason and Sue was starting to wonder what the heck was wrong with me! Tuesday was a little more up and down. I had a rough patch in the morning and again I felt the anxiety lift away around 8:30am as if someone turned on the light. I took Maggie to her first grade orientation and while sitting and listening to the speeches, I had another short episode, but luckily it didn't last. I went to work and struggled through my teaching periods, but made it through the rest of the day very well. Wednesday was pretty good as well. I went into work a bit earlier and although at times felt overwhelmed by the noise and activity of the kids, it was a good day. I went to my first therapy appointment and really enjoyed having someone not connected to me in any way to talk to and get some feedback from. We talked about a strategy for surviving my trip to the MRI tomorrow.

Toward the end of the session, I felt the left side of my lip go numb. Soon after, My entire left hand went numb. This was very difficult to deal with in terms of what it means to my health. The therapist and I had just discussed these types of symptoms I had been having and how I always let my mind go to the dark side and thinking about the worst possible scenarios. I tried to keep in mind everything we had discussed and not let it completely bring me down. While in the car on the way home, my hand finally came back to life and I calmed down.

Tomorrow afternoon is the MRI and I am more worried about getting through the test than I am the results and follow up treatment if any is necessary. I'm going to bring a cd of music in case they have that capability and if not, I will use the visualization techniques that the therapist and I worked on. Keep me in your thoughts for an easy time through the test and positive results.

Some Progress to Report.

A couple of hours after finishing my last post I started to feel the anxiety lifting and my appetite returned. It lasted the rest of Sunday and I was very thankful for the relief. The strange feelings in my arms and legs continues to be concerning and worrisome but there will be no answers to this for several days.

As I write this morning, the anxiety level remains low and I feel pretty well. Here's hoping I've been through the worst of it. Thank you for your continued support and prayers. Keep them coming!

Tough Week.

I've been avoiding this post, because It's much easier writing about positive steps that I have taken. I also realize that everyone reading is wanting to hear the amazing strides I am making in my recovery, however I can't fulfill that this time.

This has been a very difficult week. After my last trip to the ER and realizing that a lot of the aches and pains I was experiencing were anxiety related, everything has changed. On Thursday, I had expected to work a half day and then prepare for our jazz concert which would be in the evening. Before work, I stopped at my parents and began to feel a bit low. I thought maybe the oatmeal I ate wasn't enough. so I ate some watermelon that my parents had in their refrigerator. I continued on to work where I experienced waves of feeling very low energy, irritability, fatigue and depression. Before teaching my first class I decided to call Sue at work and ask her to come and pick me up. I made it through my first jazz class and my co-worker Greg took my second class. Sue picked me up and we went home. I felt crappy the rest of the day and I decided that I could not go to the concert that evening. It was a difficult decision, but it had to be made.

The anxiety is paralyzing. My entire body feels it and I can't will myself out of it. There were a couple of evenings when I felt it disappear. My body felt better, my appetite came back and my spirit lifted. This was short lived because the next day it was back. As part of this anxiety are the dark thoughts that are similar to the place I was in when first diagnosed with the tumor. My brain keeps going to the worst case scenarios in every situation.

Yesterday, I started to feel some slight tingling in m left arm and hand and later the leg. I immediately decided that my tumor had grown and was affecting my motor functions and I would have to have chemo therapy and would be sick from it. Will I ever be myself again? Will I be able to work again? Will I gradually deteriorate and be reliant on the people around me to get through each day? This isn't what I had planned for our lives? Why am I having to go through this?Will I ever be happy again? I want to go back to the happy days.

What has changed so much from all of those weeks when I was feeling great both physically and emotionally? I started an anti-depressant to help with my mood and anxiety. Is this having an affect on me? Is what remains of the tumor affecting me? Is the anti-seizure medicine that I've been on since before the surgery affecting me? Sue and I both have spoke to Sloan and my doctor said that I haven't been on the anti-depressant long enough for it to help me. He did start weaning me off of the anti-seizure medicine in hopes that this will help the problem. We moved my MRI up to later this week, which further enhances the anxiety level, wondering how I will get through the exam and waiting for the results which won't be known until the following day.

Needless to say, I have been struggling every day since Thursday. On Wednesday night, I spoke to a high school friend who was also diagnosed with a brain tumor and had her surgery almost a year to the day before mine. Her tumor is an astro-cytoma which is Cancerous and she has had and continues to have a tough battle, but has a positive attitude and continues the fight. Although I enjoyed reconnecting with her, I think hearing some of what she has been through was difficult for me and I wonder if this conversation has affected me. It's hard to know when to compare stories with someone and when to protect myself. I don't blame you for this at all, Christine, and I wouldn't want you to be anything but honest with me. Hopefully we can talk in the future when I'm in a better emotional place.

I have my first meeting with my therapist on Wednesday and I'm hoping this will help get me back on track. Please continue sending the prayers my way.

Today Will Be A Better Day.

So I guess the tone of yesterday's post caused some concern, because I heard from a couple of friends who were concerned and contacted me. One friend sent me a message to let me know that the anxiety I've been dealing with is normal and that she too has dealt with this. Hearing her story was very helpful in knowing the power that anxiety can have over your body. The second was a phone call from a college friend who is also concerned about for a different reason. He lit into me about doing too much and expecting too much from myself.

Both people who contacted me were very helpful in getting my head screwed back on. It was a very tough day filled with fear and anxiety and hearing from these two great friends was extremely helpful, thank you! Additionally, I was able to verbalize some of the fear and anxiety to my wife which also helped me. By the end of the evening, I was feeling physically and emotionally much better.

Sorry to anyone who I worried by yesterday's post. The folks at Sloan-Kettering told us that I would have these days and thankfully I have an amazing support system around me of family and friends that swoop around me and help pick me back up.

Today WILL be a better day!

Is it ALL in my head?

I feel like I'm battling with myself over whether symptoms I'm feeling are legitimate physical symptoms that should be checked by a doctor or if they are related to anxiety. As you know, my recent trip to Mather would seem to indicate that anxiety is in play. Initially. knowing this was comforting and helped how I felt physically as well as mentally. As the weekend continued, this battle started to creep in again. On Saturday, I made the mistake of mowing both the front and back lawns rather than splitting them up over the weekend. I was very tired for the rest of the day and most of Sunday. On Monday, I worked in the morning as our marching band performed in Bohemia's Memorial Day Parade. I was outside for about 3 hours and felt pretty good marching the parade. We had some friends over for dinner and following dinner I was cleaning up and felt the need to sit down. My legs became very shaky and I got very warm and sweaty. This felt like one would feel when their blood sugar level is down. The only problem with this is that I had just had a nice dinner of grilled chicken, corn, watermelon and pasta salad. Our guests had baked cupcakes for the kids and I might have had a bite or two of Thomas's. Eventually the sweating gave way to some slight nausea and then the chills. I even had to put on a sweatshirt and cover myself with a blanket. I was very scared and wondered if this was going to land me back in the ER. I waited it out, slept a bit and eventually felt better. It would seem to me that this was not anxiety related. Is it related to my current medical condition or was it something else. Did I overdo it, by marching in the parade and then having guests over? Did this cause the problem? Do I have some other medical condition? Is there some kind of infection in my head from the surgery? This is what plays in my head during this. I slept well last night and this morning woke up with a kind of burning discomfort on my right side...feels like the lung area. Doesn't hurt more to breathe deeply, but just breathing normally I feel it. This is similar to what I'd felt last week. But of course, my mind begins to wander towards what this could possibly be and this always includes worst case scenarios. But I keep trying to tell myself, "They did a chest x-ray, and a CAT scan on my chest. If there was a problem with my lungs, wouldn't they have seen this?" It's a constant battle.
Overall, I'm getting frustrated by how long it's taking to get back to feeling good every day and performing my normal daily routines. I know it hasn't been that long, but I guess I have higher expectations for myself. I'm tired of feeling less than 100% and I want to be able to get back to normal, but my head and my body are holding me back.

I Love Drama!...Not!

Remember when you were a student and you would learn a new vocabulary word and then that next week or so you would either find that new word in a book or hear it on television. "Why all of a sudden am I hearing this word. Where was this word before this week when I learned it"? Did it exist and I just wasn't paying attention to it?

This is kind of how it's been with me these past several weeks. Now of course, I know what cancer is and I am very aware of death and dying, but it seems like all I read about, see on television and hear about in real life is cancer. I also realize, that I don't have cancer, but I did have a cancer scare. On television, I can't seem to get away from the commercials for the Cancer Treatment Centers of America or the stories on the news of celebrities who are battling cancer. This week it was golfer, Phil Mickelson's wife, who was diagnosed and farrah fawcett who has been suffering. There is a perfectly good television show, Grey's Anatomy, that I can't watch anymore because the story line has been about a main character who is dying from a cancerous brain tumor. In real life, it seems like I keep hearing about people we know who are being diagnosed with cancer and other very serious conditions. Why does it seem like the frequency of this has increased recently? Maybe it's not increasing, but I'm just very sensitive to it now.

Dr. Gutin's nurse, Patsy had warned us that there would be good days and bad days for us in the coming weeks and months and suggested that we try not to have bad days at the same time. To this point, I didn't think I had really had any bad days. There were days following the surgery when I was dealing with the effects of anesthesia, and steroids, but overall I was just happy to be alive. Well, it finally hit me this week. It was probably a combination of working more and being more active which has made me more tired and I've also been dealing with some issues with anxiety. Much of which has to do with what I wrote about earlier in this posting. Even driving has been tough at times and on certain roads. I worry mostly about other drivers who might do something stupid that would cause an accident. I worry about other family members who are driving and what could happen to them.

It's the anxiety that caused some drama when it landed me back in the er on Wednesday night. The ache I have had in my chest and the evening changes in breathing was enough for my oncologist to suggest I go to the er. I initially refused, not wanting to further disrupt my family and my routine. I also hate the thought of spending 8 hours in the hospital for them to tell me that I'm fine. Well, it ended up being 20 hours and I'm glad I went because they were able to tell me I was fine. The reassurance from the x-ray, Cat scan and stress test that were all negative was able to help me focus my energy on reducing my anxiety rather than worrying about what else might be wrong with me. We were able to tell a white lie to Maggie so that she wouldn't be further distressed and that worked like a charm.

Earlier in the week, my family doctor had suggested and prescribed some medication to help with the anxiety as well as some counseling to give me some tools to deal with the anxiety. Initially I was resistant, but I think trying this for a short amount of time might be beneficial and get me over the hump. So, that's it...no more drama from me...I'm done!

Happy memorial day! Please take some time to remember those who have given their life to protect us and our freedoms in this country. Remember their families who have suffered in pain from the loss. Never take for granted how wonderful our lives are in this country because of their sacrifice.

This has been tough on everyone.

Check out what Maggie brought home from Kindergarten today. Oh the pain! :(

In case you can't read her writing, it says: I am scared of when my Dad went to the hospitle because I thowt he was going to die and I cryed it was scary.

The Concert.

So the spring concert at school exceeded my expectations on thursday night. The new tux that we bought in the fall does not fit at the moment and we had to piece together an appropriate outfit. I did my best not to be too upset with myself and kept my focus on the fact that no one was really going to care about the steroid weight I'd gained but only that I was able to be there so soon after brain surgery.

The students performed very well. I enjoyed every minute I was conducting them. I wasn't too nervous prior to the concert, but it did hit me during the performance. My legs and arms got a little shaky and I wondered if I would need a stool to sit on to get through, but I got through without it. Although I felt the energy from the audience that they wanted to hear from me in regards to what I had been through, I didn't want this night to be about me. For many of the students, this was their last time performing in high school and I wanted to keep the focus on them and all of the students who had worked hard all year. I also realized that I couldn't just ignore the fact that everyone knew what had been going on over the past 6 weeks or so and I did make reference to it, but kept it brief which also helped me not to get too emotional. The seniors gave me a beautiful gift and I will miss them all as they start a new chapter in their journey.

Probably the most notable experience that night did not happen in the auditorium. I met a former student in the band room who came to visit and say hello. I had recently heard a little about some major health issues that he had been battling and I was interested in hearing how he was doing. Rich has a tumor on his upper spine that is causing him tremendous pain. He went to Memorial Sloan-Kettering and they found that the tumor would not be able to be removed due to the location and the risks involved. They put him on some pain killers which don't seem to be helping much at all. It seems that the doctors will be making some decisions about treatment for this tumor, whether it be radiation or chemotherapy. As I've said, I have heard so many stories in the past weeks about what people are going through and I really feel like this is part of the learning process for me. Here is a 20ish year old just starting his life and dealing with this terrible issue. It doesn't seem fair that my issues were stabilized relatively quickly and I have a pretty positive prognosis for the future, but it seems like Rich has a much longer and more difficult journey. Please keep him and his doctors in your prayers.

5 Weeks and counting.

So it's been 5 weeks since brain surgery and today is has a couple of other significant achievements as well. Today I will be discharged from physical therapy. I remember going to the first appointment when I couldn't hold anything in my left hand without dropping it, my balance was suspect and the left side of my face was virtually paralyzed. I had little muscle tone and overall, felt very weak. Today, I have all feeling and strength in my left hand and arm, my face muscles are progressing and overall I feel much stronger. Endurance is still an issue, but I will continue to work out to regain this.

Tonight is also our spring concert. Following my surgery, I had accepted the fact that I would not be able to conduct them at the concert and someone else would have to do it. I had set a (what I thought was ambitious) goal of coming back for the first time at the Memorial Day Parade. I wasn't convinced that I'd be ready for the parade, but it was a goal to shoot for. Little did I know that I would start working one period a day on May 4 and that I would be able to conduct the Wind Ensemble in their concert. Pretty good achievement! I hope the students are proud of all that they have accomplished this year.

The benefit concert that took place on Tuesday was very nice. It was great to see some of my co-workers perform! It was very hard to sit there and listen to everyone say what they did about me. I felt like I was retiring or dead! It was also hard but encouraging to talk to a few parents who shared their personal stories of their battles with cancer. As I've said, it's amazing what people have to endure in their lives every day. It's like God is helping me not to focus on my own problems, but to focus on others who are dealing or have dealt with a lot worse than I currently am. I am learning so much from this experience. The benefit raised nearly $3000 in a very short amount of time! I applaud all of the students, teachers and parents who made this event possible. I hope to continue this in the future.

Live Like You Were Dying.

First thing's first. Don't forget about the concert for cancer tomorrow night at 7pm at Connetquot High School. All proceeds to benefit cancer research. Also, I will be conducting the wind ensemble in their spring concert this Thursday at 7:30pm. We are first on the program. I didn't expect to be able to do this concert and was ok with that fact, but I have worked hard to get back and I hope the kids have a great concert. See you there!


As I probably wrote at one point, there were a lot of signs and symptoms that led to me being diagnosed with a brain tumor. There were the medical symptoms, but there were some other non-medical signs or messages that I was getting along the way. I remember thinking and even commenting to Sue about a year ago that I wanted to investigate getting one of those disability insurance plans like AFLAC. I just thought, "boy what would happen, if I was unable to work for a long period of time." Remembering that our district and union had made a plan like this available to teachers, I called the district to inquire about it. I guess no one chose to sign up for it when they realized that the cost would not be taken out pre-tax. I wanted to call the union and find out if I could sign-up anyway, but I never followed up.

Another sign was that prior to finding out what was going on with me, I often had a certain song in my head. As a musician, I often have music going in my head, but this was different..and it's usually not a popular tune. Most of you know this and the lyrics, but here they are anyway.


He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.
I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.
Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.
And he says,

[Chorus]

I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

He said I was finally the husband,
That most the time I wasn't.
And I became a friend a friend would like to have.
And all the sudden goin' fishing,
Wasn't such an imposition.
And I went three times that year I lost my dad.
Well I finally read the good book,
And I took a good long hard look at what I'd do
If I could do it all again.
And then.

[Chorus]

Like tomorrow was a gift and you've got eternity
To think about what you do with it,
What could you do with it, what can
I do with with it, what would I do with it.

[Chorus]
Sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.
And I loved deeper,
And I spoke sweeter,
And I watched an eagle as it was flyin'.
And he said someday I hope you get the chance,
To live like you were dyin'.


It is said that Tim McGraw wrote this song about his father, Tug McGraw, former Major league Pitcher who had been diagnosed with a malignant brain tumor and given 3 weeks to live. He ended up living 9 months. The lyrics in this song say a lot and they have much more meaning to me these days. On the surface it says that when you're faced with imminent death, one would want to experience as much as possible and try to be the best person he can in his final days. The more important message to me is when Tim writes, "Someday I hope you get the chance, To live like you were dyin'.

There were several days initially, when I was convinced that I would not get to walk my daughter down the aisle to get married or would not get to take my son to his first baseball game or even have a catch with him. My thoughts were that, this is going to ruin my family's life. It's still hard today to even write about it. Once we knew that this tumor was treatable and I could live many years with this, my focus began to change. I started to think more of these wonderful lyrics.

What would I do if the prognosis was different. How would I choose to spend my last days. Would I choose to wallow in self pity and ask, why me? No, I would choose to live and enjoy every moment I had left. I would choose to love deeper and speak sweeter and forgive anyone who I had not. The more important thing is that I choose to live this way even with the current prognosis. As I've said, I'm different now and I will think and behave differently than I would have before. And most importantly, I wish that everyone could experience this change i themselves without having to go through what I have.

I'm not into preaching to people about how to live their lives, but I just know how differently I look at things now and I think it's a gift and I wouldn't want to go backward.

So spend $.99 on Itunes and put this song on your ipod and just think about the lyrics as you listen, they're very powerful.

Another Step Forward!

You'll notice that the time of this posting is not 3am or some other ungodly hour! That's because your favorite blogger slept the whole night in his own bed!! As I figure it, it's the first time I slept the entire night in bed sine March 27. That was the day before the ill-fated brain MRI. It seems like a small thing, but I can't tell you how excited I am that I made it through an entire night without watching TV or going on the computer or....let's see what other crazy things did I do in the middle of the night...eat like crazy, mix up french onion dip,bake bread It's these small accomplishments that show that life is returning to normal.

Snap, Crackle, Pop

As time goes by, there have been some indications that healing is taking place. For one thing, my head has been very itchy. Everyone knows that as a wound heals, itching is a common symptom. It's a bit more annoying when the head is involved and a large incision. I just want to scratch it like crazy but don't want to upset the incision site. I've also been managing some mild headaches over the past few days. When you're in the hospital, the nurses are often asking you to rate your pain on a scale of 1-10, where 10 is the worst pain ever. These headaches are only getting to a 1 or 2, and they often go away as quickly as they appear. Most of the time no pain medication (I've been using tylenol) is necessary. My guess is that, as I've been weaned off of the steroids which were used to teat swelling in my head, there has probably been some mild swelling as my body adjusts to the fact that the steroids have been taken away. Either way, the headaches have been very mild and very manageable. A new symptom started a couple of days ago. I started getting a "snap,crackle,pop sound on the right side of my head. It comes and goes and sometimes I don't notice it for several hours. I'm sure there is a lot of healing going on inside of my head at this point and these sounds are probably very normal. Sue called over to the Commack Sloan-Kettering center, to Dr. Nolan's nurse to let them know about these symptoms. As expected, these seem like normal symptoms, but they do want us to keep a record of the headaches as far as when they are occurring, their intensity and duration. Thankfully, there was nothing to record yesterday and I hope this will continue in the coming days.

Going back to work is still going very well. Our band rehearsals have been successful and I'm really looking forward to conducting at the concert next Thursday. My co-workers had the good idea to put my group first on the program, thinking that I might want to leave right after my portion. It's funny, apparently there is all of this drama going on at work within a couple of ongoing situations. my outlook on this stuff has changed a lot over the past month. Even before all of this, I was the type of person that would mostly steer clear of all of this crap and do my own thing, but I would find myself being drawn in and getting upset by it and the people involved. I feel differently now. After this past month, I know what is important. For on thing, I have the best job in the world! I get to work with wonderful young-adults who at times can make you crazy, but they are some of the most caring and appreciative people I have ever met. The cards, letters and messages that I have received have taught me how much of an impact I have had on their lives. There have been small things that I have said or done that I don't necessarily remember, that have made a lasting effect on these people. It has given me a renewed sense of pride, but it has also reminded me of the responsibility of what I do and say to students everyday. With one sentence or less, I can build a person up and I can also tear someone down. We as teachers all have this ability and we need to remember how much influence we have on these kids. Even though it seems like they are not listening to us, they are. Even though they seem disinterested in what we have to say, they ARE interested, and even though they will never admit it, our students need to be praised for their accomplishments and guided and supported through their failures. We hold an amazing power in these people's lives and I hope I never take this for granted again.

(As I've alerted some folks, it seems that since my surgery, the filter that we all have in our brains that tells us, "hey don't say that out loud." or, "If you say this you're going to offed someone" is a little impaired in my brain so beware! You've been warned! :)

As for all of the drama that goes on every day in a school district, I say GROW UP, PEOPLE! Put a period to everything that has happened and move forward. There is no reason that two, or more, adults can't peacefully co-exist and work toward the same goal of effecting the lives of our students. Someone needs to be the bigger person and decide to rise up out of the hole of drama and focus all of their efforts on our students. When you think about it, it's all stupid crap that really doesn't matter. We all have a lot to offer our school and our students need us to get along. They always know when we are not getting along, because they see through our attempts to cover it up. As I move through life, I have found people who can't seem to function without drama in their life. It's like the drama fulfills some kind of need for them. In these situations, I say, Don't fulfill that need for them, rise above it. And frankly, I really don't want to hear about it. I am in a really good spiritual place and I really don't wan to hear the details of the drama that you have chosen to get yourself involved in, so go unload your crap on someone else. Sorry to be insensitive, but I've been faced with my mortality in the past month and I could really care less about this meaningless stuff that takes up so much time and energy, needlessly. I was going to continue my rant into some larger school organizations, one of which I am a part of, who think they are working for me and our students, but care only for a small few and their goal is to make everyone afraid and paranoid, but that filter I was talking about earlier is kicking in and actually yelling at me to stop, so I will!

On a much more positive note, one of my extra-curricular jobs is advisor of our chapter of the TRI-M National Music Honor Society. It's a hard job because our students are so busy with all of the activities they do that we struggle to get anything accomplished in any given year. While I've been away, however, the group has sprung into action. It seems that my experience has inspired these students to put together a benefit concert. They have scheduled several groups from all of the different buildings in the district to perform. Apparently, there will be raffles and other money-making events and all of the proceeds will be donated to cancer research. I am honored to have been the impetus for this event. It once again shows me the impact that I have every day and it reminds me to protect and continually care for the special relationship that I have with my students. It also reminds me of what is important in life. I plan on attending this event, even if it's only for a short time. The even will be held at Connetquot High School in Bohemia on Tuesday, May 12. I would assume that it would be at 7pm, but when I have more info, I will post it.

Remember to keep focused on what's truly important in your own life and to rise above all of the stuff that wants to draw you down into negativity. It's so easy to get drawn in, don't let it happen.

A rainy return to work.

It's been so rainy here for the last few days and it seems like it will continue for at least another day or two. The darkness of it all is so difficult to deal with sometimes. It's definitely not as bad as those days in between diagnosis and surgery, which were similar weather wise and so dark I could barley function, but it's amazing how a little sunshine can change ones whole mood and outlook. I really don't know how people in places like Seattle, England, Rochester, and Fredonia, NY (just picking on some family members) deal with all of the grey days each year. Hopefully they are taking their vitamin D supplements!

So, it was time to start the long process of getting back to work. It';; be a long process because I plan on taking a long time before I am working a full day. I am definitely not ready for that and I don't anticipate being ready for that for at least another month. Also, as several people have advised me, once I go back full time, people will assume that I am fine and will start expecting a lot from me. They will expect that I will be the same person I was before all of this. I also have a fear of over-doing it and getting sick. I really don't need a set-back like that. Thankfully, my supervisors have been so understanding and supportive that I have no guilt in terms of my plan to return. My wife will tell you of the days in the past, when I would have such a hard time taking a day off when the kids were sick. The guilt of not being there for the school kids, my co-workers, etc would be overwealming for me. It seems so silly now....probably a lesson I needed to learn.

So the plan is for me to start by teaching one 40 minute period per day. Since my Wind Ensemble has their concert on May 14th, I thought I should work with them everyday and help them prepare for their concert. Once the concert is over I can shift my focus to my jazz ensembles who have their concert at the end of the month.

I was very excited all day to get back to teaching. A couple of issues popped up that fall under the category of, "Why do we really need this right now?" Maggie came down with a double ear infection and was home from school. Which means more sleepless nights for Sue and lots of screaming and crying (from Maggie...not me!) Also upon returning from a shopping trip to BJ's, I hear a noise from my car that sounds like air leaking from somewhere. Yup...a big fat nail in the tire! Thankfully, SUe didn't need her car so I took it to school.

I arrived at school about a half-hour before the class. I was greeted to a decorated office. Some of the students made welcome home signs and hung cardboard music notes in my office as well as streamers hanging in the entryway. Very sweet! I got to chat with some students and co-workers and before long...the bell rang and my anxiety level increased. I had someone put my chair on podium so I could sit while I conducted. Before I could start the class, a couple of the seniors came up and made a short speech about how thankful they were to me for the hard work I did on the Disney trip. They gave me a beautiful present, including a Disney T-shirt and a picture of all of the seniors in a Disney frame. Very thoughtful! Another group of students gave me a journal that they had purchased in Disney and they wrote down some of their experiences while they were there. I have not read the whole thing yet, but one student insisted that I read the first entry. The entry explained something was wondering about since I had arrived. There was a trophy in my office that said, "World's best Father". I was confused by this and I didn't know who's it was. Upon reading the entry, it all became clear. The student's wrote that as they travelled through Hollywood studios, they came across trophies. There were all kinds of trophies, including some that said best teacher, etc. In thinking about getting me one of these, one of the students said....no...he's more than a teacher, he's our father. It was tough to get through that moment without crying but I did. How lucky am I to have chosen this career. Our students are some of the most kind and caring young people I have ever met. Their parents should be proud of them.

The rehearsal itself went well. The band is sounding pretty good and I'm excited that I should be able to get through the concert with them. It was great to get back to the routine and I thank God for the strength that has returned already. Upon returning home, I did crash in my chair for a nice nap! Thanks to everyone who made my first day so special!

Whistling Willy.

As a pre-teen and teenager who loved music, in particular jazz, I remember spending many hours in my room listening to music and whistling along. I'd even be whistling to the music left over in my head when it was quiet. I'm pretty sure I remember Mom ad Dad referring to me as Whistling Willy from time to time. Because I did it so much, I was a pretty good whistler. I even found that if I could whistle it, I could usually transfer that knowledge over to the saxophone and play that melody on my sax. I spent at least as many hours blowing familiar melodies on the saxophone...most of them the melodies that I was constantly whistling.

Post surgery, I had a major weakness on the left side of my body. Because of the location of the tumor (right side) and the fact that the tumor is resting against the motor cortex of the brain, the work that the surgeons did to remove almost all of it, did some as they described, "temporary damage" to my left side. My left arm and hand had been very numb following the surgery and even more so was the left side of my face. Smiling was how the doctors checked the progress of this. I didn't realize the severity of it, until I did it in the mirror one day and realized that the entire left side of my face was not moving at all. I think Dr. Gutin understood my frustration and fear as during one meeting while on his rounds, he told me "It'll come back, Scout's honor!" I believed him and had total trust in him, but I was definitely concerned.

Over the past 3 weeks, I have seem remarkable progress in the numbness in my arm and hand. At first it was a general numbness and I didn't want anyone touching that hand because it felt like dead meat. As the days passed, feeling started to come back and the general numbness changed to specific spots in my fingers of numbness. It would feel I had a tight rubber band around o finger or two. It wouldn't last long, but it would come back often. Sue had bought me one of those squeeze balls. It was like a balloon that was filled with sand that you can squeeze for stress relief. I found that the more I used this, the better my hand felt. Today, the left arm/hand is pretty much back to normal, however occasionally the entire arm will go totally numb. This will last for 10-20 minutes and then it will go away. It's a very uncomfortable feeling, and I always worry that it won't go away this time.

As far as the face goes, aside from the smiling problem, I have not been able to whistle since the surgery. Sue and I have had a special whistle that we've always used to get each other's attention and I haven't been able to do it. When I try, it just sounds like air...no whistle...very frustrating. As I wrote yesterday, I thought it would be a good idea to go over to school and get my saxophone and try playing a little to get those muscles to engage and I did.

So yesterday afternoon, I put the sax together and started fooling around with it. Unfortunately the experience was difficult for me. First of all, the muscles are so weak, that I felt like a fourth grader who was just learning how to make a sound on the instrument. Air and spit were flying everywhere. How unfair is this? I have a Master's degree in performance where I studied with a world reknown saxophonist and here I am at 35 years old and my skills are gone. The other "problem" is that I have two beautiful children who worship the ground I walk on and when they watched me put my sax together, hey went and got their recorders so they can play along too. The problem with this is that, they play the same very high/loud pitch over and over again. I found it impossible to focus on what I was trying to accomplish because of the noise that I could barely stand. I eventually withdrew to the garage for about 5-10 minutes so that the experience ended in a positive way. I found that the more I played, the better the sound and feeling got. I felt like I was starting to control those muscles just a little bit.

This morning, when Sue and Thomas took Maggie to religion class, I took out the sax again and played for a while. Again, at first, it was very difficult, but quickly improved. Following this experience, I took a shower. While in the shower, something made me want to try to whistle. I couldn't believe what I heard...my whistle was back! When Sue came home...I demonstrated and she seemed impressed. I also checked my smile and it seemed to be better since having played the saxophone. So it seems that this is great therapy for these face muscles. I hope to have my smile and my whistle in great shape very soon!

Dad called and questioned me about my thoughts for mowing the lawn. The weather was questionable, and it will be fr the next several days. If we didn't get it done today, it will be more difficult when it's really long in a few days. I agreed and Dad offered to come over and help. When he arrived, I was just finishing the front. I expected to be able to at least do the front, but was unsure how much of the back I could do before I needed to relax. I felt pretty good after the front, so I continued to the back and ended up doing all of it. The walking felt fine..it was just the bending that I had to do while emptying the bag that caused me some discomfort. I felt very happy that I was able to do all of it on my own...it just means I'm getting more of my life back and soon I won't have to rely on others to help (not that that's a bad thing!)

At about 3:30pm, my co-worker, Greg, his wife, Chrissy and their twin children came over to visit. Sue had been concerned about this visit and if I was really ready for all of this activity. I admit that I was too, but I really wanted to have some visitors. I think I did a great job of enjoying our company and enjoying all of the kids. I was so impressed by Maggie and Thomas. They loved having the babies here and took such great care of them while they were here. We had a nice dinner and dessert and by 7:30 ish, I was definitely ready to crash. Tomorrow, Mom ad Dad are meeting us for church and the maybe some breakfast afterward. I feel like, the more I push myself, the more I can do.

Today was a very good day!

3 weeks post surgery!

So it's been exactly 3 weeks since my surgery and although I am pleased with my progress, I had hoped that my strength and endurance would be better. I get tired and worn out very easily, but I have to remember that I'm not really sleeping at night, which is difficult. It's sometimes difficult to be patient with myself.

This morning, I took my final steroid pill and I was very happy t do so. I did not cur my eating though as I had Sue take me to Ruby Tuesday's for some salad bar and of course we shared some buffalo wings! Following lunch, Sue drove me to Smithtown to a day spa. I was scheduled for two appointments. The first was a hydrotherapy appointment, which was basically sitting in a hot bath for 20 minutes with jets in it. It was very relaxing. Next was an even more relaxing 30 minute massage. I haven't had a massage in about 10 years so, it was truly a treat. I think I may have to go back for the hour massage!

I have adjusted the times that I'm taking my anti-seizure medicine. I was doing lunch-time and bed-time because that was what the hospital had set up, however I have been wondering if it's this medication that is keeping me awake at night. Since Dr. Nolan would prefer that I stay on it for about 6 months, I figured maybe I could make it more user friendly. It seemed like last night was a little better already. I was awake for a big chunk of time, but I think I also slept more. We'll see what happens tonight.

Tomorrow should be a little quieter day. I have an eye doctor appointment and I may swing over to school to pick up a saxophone to bring home to practice on. I think this would be good in terms of re-training my face muscles and playing music will do wonders for my mood I expect.

The cards and messages keep pouring in from people wanting to check in with us. I would have thought at this point that people would fell.."Well, he's gonna be ok" and they would move on, but quite the opposite, people want to keep making sure that I'm getting better. It's these notes, messages, and cards that are such a strength to me and are encouraging me to get stronger so thank you so much. Here's to 4 or 5 solid hours of sleep! goodnight.

Return to school.

Although it remains to seen what the lasting effects are, I feel like I may have turned a corner today in my mood. I decided to take a trip into work and see everyone. I really miss everyone and I also knew that everyone seeing me would serve them as well. Sue and I decided to stop by one of my favorite restaurants (Smokey Bones) first because everyone knows that steroid boy has to eat like every 2 hours! We shared and appetizer and sandwich (big mistake). We did get our own desserts though!

We went over to school and went into the main office, where we were surrounded immediately by teachers and secretaries. It was so great to see everyone and hear again how many people are supporting us through this. This school community is like no other. We went to the principal's office and he brought us in. Greg Murtha is a wonderful man and principal. I have always admired him especially for his abilities as a public speaker and motivator. He seemed so happy to see me and was also excited to get me down to see the kids...he really wanted to be a part of that which I thought was so cool. I spoke to him about my plans for a gradual...very gradual return to work. Although he supports whatever decision I make, his concern is that I try to do too much and I get sick and have a setback. I have those same fears and I will continue to monitor my strength and conditioning this week to help me make the best decision possible about working 1 period a day starting on Monday.

I felt a little awkward at first seeing the kids. Although they seemed happy to see me, there was an uncomfortableness about it. This is normal. I do look a little different with my head shaved, a little heavier from the steroids, and the left side of my face still partially not functioning. As the time passed, and the student's day ended, they and I loosened up and I loved just being among them...watching them, listening to them, etc. It was interesting to see a few of them who had no idea what they should say to me, but still came over and expressed their love and support. As the time passed, I started to feel a little depleated in the energy department. I thought I was getting tired, but it was really just the emotions of it all that I think did it. We said our hellos and goodbye's to the kids and fellow staff members and Sue got me out of there as soon as she could. I'm glad she came because she knows usually before I do, when I need to move on.

On the way out of the parking lot, somehow we got on the topic of wanting a sweet ice tea from McDonalds. I convinced her to stop for me and since she was already going in, maybe she should get me a couple of hamburgers, french fries and hot fudge sunday! MMMMM.....hit the spot!

I enjoyed the rest of the afternoon and evening and I felt like my mood had been better since going over to work. I interacted a bit more with the kids and enjoyed watching them play. Here's to more days like this one!

Sunday thoughts

It was a little too much to expect all of us to get ourselves together for church this morning, but I knew I had to do whatever it took to get myself there. I showered and got dressed and drove over. I sat next to our children's day care provider, Terry, who is such a wonderful person and huge support for us.

As I'm sure I speak for a lot of church-goers, I often struggle to get a message from the scripture and from our celebrant's homily. There are usually so many distractions with the kids there, but today I had nothing else to focus on. The message that I received through our pastor, Father Chris, was that, "Out of death,comes new life." Jesus died on the cross but was raised to new life in resurrection. This got me thinking about my own situation. Part of me died on that saturday in the MRI machine. My life as I had known it up until then had ended. It was the scariest day of my life. But out of that death has come new life. It is still scary in some ways, but in other ways there is a sense of excitement. What will this new life bring? Where will it take me? What experiences will I have that I wouldn't have had if my life hadn't changed? This is such an amazing gift that God gives us to help us look past the fear,and look toward the new opportunities.

The rest of Sunday was very nice. Our visitors headed home after lunch.I went to my parents by myself. I needed a change of scenery and I'm sure Sue enjoyed a little time without the patient! I used my parent's jacuzzi tub, which was very relaxing. I watched both the Ranger's and Met's games, which was far from relaxing since they both lost. I took a couple of naps and had a great dinner of chicken, mashed potatoes, stuffing and broccoli. Nothing like Mom's home cooking!

I tracked the progress of the flights back from Florida and I'm glad everyone returned safely and had a great time. Maybe it's time for me to make an apprearance in the band room......but when...hmmmmm.

Brief setback

So I guess the 5+ mile walk yesterday was a bit too much! I woke up (well that would seem to indicate that I slept...not so much!) with a slight headache. I had not experienced this pain since after the surgery s o I was a little nervous about how intense it would become. I took some tylenol around 7am and it didn't seem to get much better or worse. I'm wondering if maybe there was some dehydration associated with this as well. Maybe I didn't drink enough after exercising so much.

Our Sister in-law, Heather who has been here visiting and helping us in every way possible sent Sue to a local massage establishment to do something special for her body. Meanwhile, Heather took our two children and her own out to the stores and lunch, which left the house nice and quiet for me. I decided to try and fight my way through my overall feeling of crap. I took a long shower and got dressed. Took a drive in the car to get something to eat. You have no idea the amount and frequency of food I am eating these days! It's really scary. The good news is that today, the steroid dosage dropped to 4mg. I will finish with it next Friday! Can't wait.

I also stopped at the grocery store and while I was there, my boss, Dave called me so I could hear the band performing in Disney. It was nice to be able to hear some of the sounds although the cell phone doesn't do it justice. I am proud of all they accomplished. I arrived home and brought the groceries inside. I sat outside and opened the mail. More beautiful cards for supporters as well as two packages. One package was from a former co-worker, Kathy. She sent some beautiful books that she thinks I will enjoy reading while I recover. Thank you so much for the kind gift. The other was from the family of a student who isn't even in my class. I think I know the student because she is on the Stage Crew. Her Mom sent a beautiful prayer card that said just the right things. She laso indicated that the gift in the no is a shaul/blanket that she knitted. At the time, she didn't know who it would be for but when she found out about my situation, she figured I was the perfect person to receive it. It is a beautiful gesture and I am overwealmed by your generocity and your prayers for me and my family.

At that point my parents arrived. Dad really wanted the two of us to work on mowing the lawn together. I went ahead and did the front lawn. I got through it, but I felt very tired by the end. I informed my father that I probably wouldn't make it through the back yard. I came inside and rested. It was at this point when I realized that my body was very tired from the long walk yesterday, so I gave in to it and sat down. Luckily the Mets were on so that gave me something to focus on in between the cat naps.

The rest of the day was much better. The headache went away and I felt much better. I spent a bunch of time in the back yard listening to the ipod and relaxing in the beautiful weather. Heather and her daughter, Alexis leave tomorrow morning. It was so great to have her here. She cooked, cleaned, watched the kids, and kept checking with me to see if I needed anything. Thank you so much for the sacrifice you made by leaving the rest of your family at home in order to help us out. I know Sue enjoyed having someone to talk to as well. To Sue's brother, Chris who was home with their other daughter, thank you and never forget how wonderful your wife is. Her energy and patience is never-ending. She is an amazing woman. Thank for everything, Heather.

So Thoughtful!

The doorbell rang tonight and when I got outside someone had left something at our door while they scurried back into their car. My initial thought was that it was a paid delivery person, but I soon realized it was someone I know. When the perosn came back toward me, I realized that it was parents of two of my high school students. Their children are on the Disney trip this weekend and they thought they could bring Disney to me. The brought huge balloons of Mickey and Minney, Disney drinking cups, stickers, pencils and mickey ear headbands. What a thoghful thing to do...you guys made my night! Thank you! Also a special thank you to the Wiley family who dropped off food as well as our good friends, Edna and Paul who brought us food as well. We have so many amazing people around us. Here are some pictures of Disney World, Selden campus!

Good stuff!

My frame of mind this morning can be easily described to you as we were about to leave the doctor's office at Memorial Sloan-Kettering in Commack. As many people have experienced in an office like this, there is the paper covering that gets put over the exam table and is changed between patients. When I got up, the entire paper covering was covered in sweat from me leaning on it. I felt a little embarrassed, but there wasn't much much that was gonna change the good mood that I had been put in.

We met Dr. Nolan. He is a neuro-oncologist and seems like a great doctor and person, very thorough, with sound answers to all of our questions. He basically told us that what I had/have is the best case scenario of brain tumors. I had a grade 2 oligodendroglioma, which is a benign tumor. This is the lowest grade for this tumor in an adult. The grading system has to do with how much the cells are duplicating. Dr. Gutin has removed nearly all of the tumor and at this time, I do not need any additional treatment to the remainder of the tumor itself.

I will begin regular MRI scans every two months for the next year. For those of you who have been reading all of these posts, you'll know that the MRI machine and I have had some disagreements as of late...I may have even promised myself that no matter what happens to me I'm not going back in! Well, that's kind of crazy, so I guess we are going to have to have a hear to heart and reconcile our differences or at least co-exist for the time being. At least I will be doing the scans at Slaon, so I don't have to go back to that evil one at Long Island Diagnostic. Assuming the scans come back with good results, the second year the time in-between will be increased.

One of the things that Dr. Nolan told us that was surprising was that if and when the tumor starts to grow again, the first thing they look at is if the tumor can be removed again surgically. I think we assumed that I would be put on a radiation or chemo treatment first. In any case, the doctor follows all of these types of cases very closely and all of his patients that are similar to me do very well.

He said there is nothing dietary or otherwise that I can do to slow down the growth. He said I should live my life the exact same way I was and we will keep an eye on it. There is a genetic test that is being done on my tumor to check some chromosomal stuff and I don't remember what the deal was with that, but when the results come in, I can ask him to tell us that again. I think it has to do with the cell mitosis.

Sue got toask her question about my bad moods again! Lucky for me, Dr. Nolan said exactly what Dr.Gutin and Patsy said...that it could be months before that gets better and to be patient. He said that I should stay on the Kepra (anti-seizure) medicine for about six months, but if it's becoming a problemin my lifestyle that we could move that up earlier. He also suggested taking aa of my day's steroid dosage in the morning so that I can start to sleep at night. I wish I knew that earlier!

So, the bottom line is that, I'm gonna be OK and I'm ready to start living again! My focus today has definitely shifted somewhat from thinking moment to moment to a little bit into the future. When should I go back to work? How should I ease into it? When should Sue go back to work and will I be ok on my own all day. All of this is great stuff! I cancelled my PT appointment for this afternoon because I just didn't want to be insie for 90 minutes s instead, I took a very long walk. When I came home I tracked my roue on mapmyrun.com and I learned that I walked over 5 miles! Unbelievable.

I'm looking forward to another beautiful day tomorrow. Dad is coming over and we are going to mow the lawn together...it's one of my favorite things to do...it fulfills that anal-retentive side of me! Thanks for your continued prayers and support, they have obviously been heard and answered. I have a lot to be thankful for and I look forward in the coming months to look or opportunities to give back in many ways. I don't know how this will manifest itself, but I am a changed person forever and I want to serve in any way I can. Praise GOD!!

TRIP DAY! :(

I suspected that today would be a little more difficult. It was still a good day full of sunshine and progress. Another good day at Physical Therapy, drove around for a while and my sister in-law, Heather and our niece, Alexis drove in to visit from Rochester. I took a long walk around town, while Maggie was at her eye-doctor appointment, at which she found out she does not need glasses...YET!
Approximately

Today was trip day. Approximately one year ago, after a trip in which we took 50 students to Atlanta, Georgia for a performance and tour, my co-worker Greg and I decided that 4 years was enough time in between and we should plan another trip with the entire marching band to Disney World, Florida for this year.

Trips have always been a large part of my agenda as a music teacher. One of the main reasons I chose my profession was the experiences that I had while a student at Connetquot High School. The trips were always such an amazing experience for all involved. The planning, fund-raising, competition preparation and the actual trip itself always brought the students and staff closer together. As a relatively shy, introverted, high school student, the trip was a time that I really came out of my shell and grew as a person. It was always fun to see the different friendships and relationships that would sprout up during and after the trips. People who would not have become friends were brought together because of the trip. There are even a couple of weddings that have happened between students who connected on trip. This is why I love planning them for my students.

Over my eleven years as a teacher, this is probably at least the 9th trip I have planned and exectuted. This one is the most difficult. The Disney trip involves air flights and is more expensive than any other trip I do. This year it was even more difficult. Although we started the initial plans last May and June, the plans were not set in place until this past fall, right in the middle of the failing economy, loss of jobs and a very tense economic time. The flights to Orlando were few and far between because the airlines had cut back on service and when you travel by plane in groups, it actually is more expensive than if you try to book you and your family a flight. Of course the hotels were more expensive and because I insist on focusing only on our student's well-being while on the trip, I use a student tour company to take care of all of the details while we are there. Yes it is more expensive, but I don't have to worry about any problems while we are there. The tour company takes care of everything. As I put all of the details together for this trip, it became obvious that it would be very expensive. In fact, in out initial meeting with students and parents I announced that it could be as much as $1500 per student. I didn't think it would end up being that much, but I know I would rather hear the worst case scenario if I were a parent. I gave the information to the parents along with a deadline for an initial deposit. I figured that we would know if there was enough support for the trip by the amount of students who committed with the deposit. We had a ball park number that we would need to have, but we also had to be mindful of the fact that we had to have a representative instrumentation for it to make sense to go. If we had 25 drummers, 2 trumpet players and 4 clarinet players, it probably wouldn't work!

As the deadline for deposits passed, my pessamistic co-worker was convinced that we wouldn't have enough...I preferred the wait and see approach. The money started flowing in and when the deadline passed, we had over 120 students committed to this trip. I was definitely shocked. It meant one of two things....either there was no recession in the Connetquot community or the community appreciated and understood the importance of this experience for their child and would make whatever sacrifice necessary for their child to go. So the trip was a go...now the real work began.

Because of the guilt I felt due to the cost of the trip, I planned a myriad of fund-raisers to help defray some of the cost. We did huge candy sales, entertainment book sale, cookie dough, yankee candle sale, chinese auction that some parents organized, bake sales, car wash, smelly pencils, etc. Sounded like a good idea, however the book keeping that was involved was never ending. I found it nearly impossible to complete all of my daily teaching duties while keeping track of all of the fund raising materials coming in and out. I counted and deposited money nearly every day. I was constantly on the computer adjusting the large excel spreadsheet that I had set-up for this. It was very overwealming...one or two days almost causing a panic attack as I recall. As we moved into January and February the work started to shift away from fund raising and toward the nuts and bolts of the trip. Scheduling the performance times, hotel room assignments, flight assignments, putting together the itinerary and trip handbook for the parents and students, and a lot of other details. I stayed up with all of it while my health was clearly deteriorating. I remember talking to my co-worker and great friend, Greg one day in my office about some of the things I was experiencing. I down-played most of it, but I do remember telling him that I was a bit concerned for the brain MRI. I am so thankful that I was so organized and completed much of the trip work before my diagnosis. We were to have our final trip meeting with the parents in which we would give out the handbook and itinerary and go over every detail. Everything was ready, but it was the weekend before the meeting when I found out that my life would be forever changed. That weekend was so dark as I wrote in previous posts because all I knew is that they found something on my brain and I had at least 2-3 days before I would get any answers. Because the meeting was coming up that Tuesday night, I had to meet with Greg and go over what he needed to do. He stopped over on Sunday afternoon. I don't know who I felt more sorry for...myself or him. It was obviously very hard for him to see me like I was. He had trouble sitting still and clicked his pen over and over nervously. I did my best to keep my composure, but it was very difficult. Greg got through the meeting fine and notified the students and parents about my condition. The students took it very hard and the parents were very concerned as well.

So this morning, all of our plans and organization came to fruition and by 1:30pm all 120 something students and staff arrived without incident at the Orlando airport. Greg called me earlier and said that everyone was enjoying Hollywood studios. I am so happy that everything is going so well, but as you can imagine it is bittersweet. I had really been looking forward to going with this wonderful group of young people. This class of freshman are wonderful and I love being around them. It's also a chance to spend some quality time with the seniors who have been with us for 4 years and will now be leaving us for college. I will dearly miss all of the amazing experiences that they will share. I asked them in a letter that Greg read to them to please take a lot of pictures and write down any funny stories for me so I can feel like I was part of it.

Tommorow will be performance da for the kids. The Kickline and Color Guard will be competing early and then the entire marching band will be marching down Main Street in Magic Kingdom. The Band will be competing on Saturday morning at Hollywood studios and on Snday, the entire group will finish their trip in Universal Studios, Thank yo to all of my amazing co-workers who have given up their weekend to be with our students. I wisj you all the best trip. It kills me not to be there, but I'll get through it and I hope to go to school to congratulate everyone as soon as I can. I am most thankful for my good buddy, Greg who has done an amazing job of picking up the pieces since I left. I've texted him so many times how I wish I could just come back to work, bring us in a cup of tea and a bagel and enjoy the day together like always. He and I will come out of this even closer than we already are. He is a brother to me.

Tomorrow we go to the Commack, NY Sloan-Kettering center where we will meet with my Neuro-oncologist (it's tough to even put that word in writing) Dr. Nolan. He will be the one to keep up with my progress in terms of MRI scans and any additional medical intervention I will need for the treatment of the remainder of the tumor. We have a lot of questions for him and most of them I am afraid to even confront at this point. I definitely have fears about some of the answers. I will pray and I have faith that God will get me though this and I will emerge from this much stronger than ever. I really love hearing that so many people are reading this blog. I know this was a long one, but it really helps me process and get in touch with my feelings...you know I am a guy and all! Apparently many in the community I don't even know are reading. I think my wife should start her own, giving her perspective of the past few weeks and then maybe one day we can write a book. Alright, maybe that's a bit much. Love to all and keep the prayers coming. I'll update you on how my apointment goes tomorrow. I know that the readers cannot post any messages to me, but if you feel the need to contact me, you may do so at jmlasher@optonline.net. Good night!

Finally...Hair is gone!

Thanks for the haircut, Lisa!

Back to Sloan

So Monday was the day that was scheduled to have a follow-up appointment with Dr. Gutin and his nurse, Patsy. My parents once again volunteered to drive us into Manhattan. I wouldn't say I was overly anxious about going back. Compared to what I have already been through, his seemed like it would be ok. I was a bit nervous about getting all of the 40 something staples out of my head. As far as the pathology report on the type of cells that made up my tumor, Dr. Gutin had already given his opinion that it was most-likely benign. I did fear a little that maybe he would come back and announce that he had made a mistake, but for the most part, I used my faith and more positive outlook to keep those dark clouds away.

My father drove us in, I slept much of the way in and we arrived ahead of schedule. It's been very hard for me in terms of my mood since the surgery. I have ben so cranky and easily set off by stupid meaningless things. I really hate being this way, but I also can't control it. For instance, while waiting in the waiting room at Sloan, the guy who was eating his 7 course lunch was driving me crazy. He would shut his eyes at times and it was as if he was making love to his sandwich. I know..very silly stuff, but that's me right now.

At one point, a man approached my Dad and asked if his name was, John and from Bohemia. My father respond, yes and the man introduced himself. The man was a long-time neighbor from the other end of Karshick Street. Although I didn't immediately recognize him, I knew exactly who he was and which house he used to live in. I also remember his daughters who were very active in our church as we grew up. The man told my father of the myriad of major medical problems that he had survived over the years. I couldn't believe what I was hearing. The man was obviously a very tough, stubborn person for getting through all he had. He was waiting with his sister, I believe who was there to see Dr. Gutin about a possible tumor. Listening to the man made me feel a lot better about my situation and my future.

We were finally called into the office and Dr. Gutin was in the hallway. He immediately shook my hand and I got to see that amazing way he has about him. His caring nature and amazing bedside manner still amazes me. Several minutes later, Patsy came in and began removing the staples. Many of them were a bit painful coming out. She said that it was mostly because of my hair, but also because men have such a low pain threshold. I can't disagree with that!

Sue started a conversation with Patsy about my moodiness and my need to be alone or separated from people. When would this get better, she wanted to know. Patsy responded by saying, "months". She said I would need time to get over this but that I did need to get over it. Patsy continued with a pep talk for both of us and I did appreciate her advice. I do feel though that it's still really early to expect that I would be back to my happy self. It's only been a week and a half. WhenDr. Gutin had come in to see us, he seemed to side with me on that, saying to just leave me alone. I mean, I don't intend on wallowing and staying in this mental state....I fully intend on getting back to my life, but I'm not going to push myself right now. I think I'm doing a great job of just staying in the moment. I'm not looking too far in the future and I'm not dwelling on the past either. I'm really just living day by day or sometimes moment by moment. I'm trying to learn as much as I can about this, which is why this blog is so important to me.

When Dr.Gutin came in, he approached us with his normal humble manner. He immediately told me that my tumor is benign and I should be very happy that it all went so well. He reminded me about the follow-up process that I would begin at the Sloan center in Commack. The neuro-oncologist there would be in charge of ordering the MRI scans at appropriate times and he would also be deciding if and when I might need follow up treatment like, radiation or chemo-therapy. You see, they can only take out so much of the tumor before it becomes too dangerous. This is why having the awake surgery is so important. They can keep checking me to make sure they were not doing any permanent damage to my brain. Dr. Gutin said they get to a point where they get too scared and they stop. He also said that there is a very mild form of chemo that my type of tumor responds very well. One of the things that has struck me about Dr. Gutin is the amazing respect he has for the human body. Here is this amazing doctor, who can do miracles, yet he is still in awe of the brain's ability to compensate for the temporary damage that was caused. This man that does this work everyday is still amazed by it. You can't teach this stuff to someone...he's got such a gift.

Dr. Gutin took us into a compute room where he showed us the before, during and after pictures of the tumor. It was obvious that the tumor was much smaller. He had estimated that pre-surgery it was more than 6 centimeters long. Unbelievable. I was able to ask a question that I had wanted to know. I asked him if he had an opinion of where this tumor comes from. "Is it environmental, diet, genetic, etc. His response was that it is really just a mutation. This made me feel a bit better. Since learning of the tumor, I had been killing myself about whether it had to do with dangerous chemicals I had ben exposed to, or a bad diet. We finished our conversation with Dr. Gutin by thanking him for taking such good care of me and we were soon out of the office. Now the net part of the journey begins...a journey toward a "new normal" way of life. I don't know what his means yet, but the journey has definitely begun. I will never forget Dr. Gutin and Patsy. These are two extraordinary people and I will pray for them always.

Dad drove the long traffic filled ride home and we arrived home in time to end the day with our children.

My big Sis!

On the Saturday before the surgery, I spoke with my oldest sister, Laurie who lives in Fredonia, NY. She informed me that she had made plans to fly down to help us for the week following the surgery. If we wanted her to stay with us, she would or if we needed space, she could stay at our parent's house. I was so excited! After the phone call, I remember crying...just so happy that she was coming to be with me on her spring break. Laurie has a busy husband who is an associate-vice president at SUNY Fredonia, a daughter, Corinne, who is a senior in High School as well as Michaela, a 13 old. Laurie herself is a general music teacher at Fredonia Central School District and an adjunct vocal professor at SUNY Fredonia. For Laurie to p and leave her daily routines make a huge impact on her family.

Laurie came in on Tuesday and was an amazing help to all of us. She helped take care of the kids, took walks with me, cooked, cleaned, woke up early with the kids. It was a huge help.

The biggest help came on Thursday. It was a beautiful sunny day. I was really enjoying the bright, cheerful weather. It had ben exactly one week since surgery and I was in a good mood. Following lunch, I started to feel a "heaviness" in my chest. I couldn't quite describe it, but I was uncomfortable and of course I started to worry. When Sue returned from being out of the house, I let her know what was going on. She called our family doctor's office, who as usual was not available. They did suggest taking me to the ER just to be safe. Sue also called Sloan-Kettering and spoke with the wonderful, Patsy, Dr. Gutin's nurse, who also told her to take me to the ER, that this is not something to fool around with.

We told Laurie and she agreed to take care of the kids for us. We headed out to Mather Hospital at around 4pm. They took us in right away and before I knew it, I was being hooked up to monitors, getting blood taken, chest x-ray, etc. I was very angry and upset. This was the last place I wanted to be. Altough, tests happened quickly at first, things started to slow down. Te ER doctor was very kind, but wasn't going to take any chances with me. He ordered a sonogram of my legs to look for blood clots. None were found. They also checked my blood work for a certain clotting factor. It was there, so that required the doctor to order a CAT scan of my chest to look for a clot. By the time all of the answers came, it was well after midnight. I had 2 iv's in my arm that hurt so bad, I wanted to scream. The guy in the curtain next to me was so annoying I wanted to smack him. The bottom line was that they had found some air in my chest cavity. The doctor after consulting a cardio-thorasic specialist, seemed to feel that it was as a result of my surgery and that it would take care of itself, but I would have to follow up on Friday with another chest x-ray. came home and finally were able to eat and went to sleep. While we were gone, my parents had come over to help. Maggie held a littlee revolt. She locked herself into her room, refusing to eat or tak any direction from my sister. She was done with someone other than Mom and Dad taking care of her. I had a lot of guilt about this. I felt so bad that I was doing this to my family. Maggie eventually came around and they survived the evening.

The next day, I followed up with another chest -ray which turned out fine. Laurie also took me to my initial Physical therapy appointment.

I will never be able to thank Laurie and her family for their sacrifice this week. I miss her already, but I look forward to traveling there in June for Corinne's graduation. It'll be a great celebration. Laurie, you will never know how much this meant to me.....I Love You!

The end of my stay.

So the end of my stay at Sloan-Kettering was mostly uneventful. I remember walking around the hallway of the 7th floor on Monday morning when I couldn't sleep. I stopped at each doorway and said a prayer for each person. I prayed for God to heal them, comfort them and their families. I prayed for their doctors and caregivers. I from now on, will always pray for the people of Memorial Sloan-Kettering. I will always be connected to this pace and I hope I can find a way to give back sometime.

I've seen a lot of troubling things in this hospital and learned a lot about myself already. There is so much that has changed me already from this experience. The key is to let it change me for the better. So I pray for myself that God builds me back in the way that he wants me. That He teaches me the lessons that I need to learn from this and that I learn them, quickly. I don't want to have to stick around for any remedial courses, if you know what I mean!

The staff finally released me in he early afternoon and we began the drive home. I slept most of the way. My in-laws were at our house to greet me. I even took a short walk around the block with my mother in-law. It was very tiring and had to rest right after. After all of the exercising I've done over the past year and a half, or so, it's absolutely amazing to me how fast muscle-tone deteriorates. It will be a long road to getting my healthy body back. Patience will be key.

Pretty interesting!

Dr. Sanjay Gupta from CNN did a report on my Neuro-surgeon, Dr. Gutin.  This is the exact surgery that was done on me.  I was finally brave enough to watch this footage.  I hope this link works for you.  I'm headed back to Sloan-Kettering today to see my favorite doctor!  I'll update you on that later.  

http://edition.cnn.com/video/#/video/international/2009/02/04/vital.signs.jan.bk.a.cnn

Oh, My Head!

I was wheeled into my new room on the 7th floor. It was pretty large for a hospital room and at that time it was empty. It wasn't long however, before I received a room mate. For whatever reason, I didn't feel the need or want to be overly friendly at this point and it was probably a good choice. My first room mate was very whiney. I don't know any of his medical issues and what he had been through, but I do know that he was a bit difficult. It seemed like he drove the nurses crazy with all of his issues. I soon came to realize that he was also from the same town as I am (Selden). Probably another reason that I didn't want to get involved. I soon had other issues of my own to deal with.

The head ache started sometime on Friday and the pain increased rather quickly. I am not a fan of taking pain medication for anything so this was going to be a difficult thing. I have heard of and seen so many people fall into the trap of pain medication and not being able to step away from it and this was the last thing I needed. I knew from the nurses that I could do tylenol, percoset, oxy-codone or morphine. Since the pain was pretty bad, I opted for the percoset first. I don't remember how many doses I tried, but it was soon apparent that this wasn't cutting it and the pain was getting worse. I hen decided to go o the oxy-codone. By this time, Friday was shot and Saturday was beginning the same way. My hopes to be going home on Sunday were ruined when one of the doctors suggested I stay another day until I we could get the pain under control. Again, I don't remember how many doses I initially took, but the pain was not subsiding. My biggest fear was having to use morphine. This was NOT what I wanted at all. When I think of someone on morphine, I think of someone who is a the end of the road of cancer and they are being kept comfortable. I told Sue, I did not want morphine. I prayed hard for relief...even the slightest relief. Sue bought me one of those ice-packs that is molded to go over your face and eyes. I wore it for a while and it was very soothing. I began to feel some relief and the headache was starting to be managed. It seemed like I just needed to get several doses of the oxy-codone in me first so it could build up and begin to work. By Sunday, the head ache was more manageable and I was getting excited at the thought of going home on Monday.

My annoying room mate finally made the decision to go home on Saturday after several hours of annoying his doctors and nurses. My second room mate would be a very sweet older man. We would check on each other from time to time and it was a much nicer situation.

I had several nurses while on the floor, but the first was, Joan. She was another wonderful care-giver. We hit it off when we shared our music experiences. She had graduated from a neighboring school-district (Patchogue-Medford) where she was the first-chair flute player under the well-known band director there. Joan took great care of me...I was bummed when she had to leave for the night.