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.

What was her name again?

So feeling very groggy in the Pack-U intensive care unit, I remember being wheeled to the furthest curtained area of the room. I quickly noticed that a nurse was set up within a few feet of my bed, with a computer, phone and equiptment. I came to know that my nures's name was Tameka. She was a young African-American lady, who was very sweet. She was anamazing care-giver, tending to all of my needs (even though there were not many needs at that point). She was obviously a great co-worker as she helped out wherever she could. The only problem was, I kept forgetting her name!

I guess the stress of the surgery, effects of anesthesia, and having a brain tumor cold have had something to do with it, but I would lie there for what seemed like a long time just trying to recall her name. And it really made it difficult onetime when my Dad was visiting and he called her the wrong name...like shameka, or something...then I was really confused. I would doze off for a while and then either I would just remember her name or I would hear someone refer to her by her name. So then, I would try to associate her name with something that was easier to remember. For example, he beginning sounds like "Tom" my son's name. If I just remember that, I'll remember her name. Well, I remembered that, but still couldn't come up with her name.

Regardless, Tameka i a wonderful nurse and person. I was in awe of her caring and patient nature. At one point, I had become very nauseous after eating some jello and italian ice and she handled it so well and made me feel so much better. Later that evening, I recall waking up and someone must have been telling her that she was going home early and they were going to move me to another spot. She seemed disappointed, and I thought I heard her say, "I just didn't want to leave him, he's cute! Must have bee the drugs!

I told her a few times how much I appreciated her special care. I got to see her again the next morning when she came back in.

When the neuro-surgical team came in to see me, they told me that I would have to have an MRI today! I became very scared. Why the heck do I have to go back in that horrible machine and how would I survive it? Sue kept me calm and made sure that I was given some medication to get through it. It really wasn't bad this time. The technician did a great job of telling me everything that was going on. She would say, "ok, this one is 3 minutes long" This really helped the test go faster and before I knew it she was telling me that this was the last one! Sucess!

Following the MRI, Iwas finally moved to the regular post-surgical floor. More later.

The surgery.

For obvious reasons this part is quite clody in my memory. I remember being wheeled down the hall..Sue had a hard time keeping it together. I knew this part would be the most difficult for my family because of all of the waiting. I was eventually wheeled into the operating room...as usual, a very cold, room. Lots of lights on the ceiling. I remember being moved at least once from one bed/stretcher to another...not particularly enjoyable. Someone from the anesthesia department was with me most of the time doing a lot of preparations. At some point I drifted to sleep. The next memory is of being woken up so that the doctors could perform the awake part of the surgery. This was necessary so they could test different sections of my brain to make sure they wouldn't do any permanent damage. I know they asked me some questions, but couldn't tell you what they were. I remember talking to Nicole (I think) she had worked with me yesterday at the dreaded MRI. She was very nice and I even remember announcing how I like Nicole. Mostly, I didn't like being awake. Ididn't want to hear the team talking and didn't like hearing the suction noise...kind of scary. I kept asking when they would put me back to sleep, however I don't remember if they answered. I guess it happened because my next recollection is being set-up in the PACK-U, which is an intensive-care recovery room. More on that later.

The day of.

Please bear with any typing irregulrities..and my concentration level is suspect...bu I'll try to tie it all together so it makes sense.

This series of posts is decribing my experiences at Memorial Sloan Kettering Cancer Center.

Many of my students are getting excited to go to Disney world, known as one of the best places on earth...right? Well, I'm here to tell you that MSKCC is really one of the best places on earth. There is no space mountain, mickey mouse or epcot, but instead are thousands of doctors, nurses and other caregivers who have devoted their life's work to helping people in need. As in any field, there were individuals who made a lasting impression on me, while others, not as much. In any case, these people chose this field. They could have chosen many other more self-serving professions but they chose to help the sickest of people. They are all tops in my book. So we drove into Manhattan on Thursday morning. It was a quiet and quick ride. I listetened to the ipod to stay calm and even fell asleep for a bit. Our first stop was to check in on the surgical floor. It wasn't long before we were escorted into the admitting area and given instructions for changing into hospital gowns. Laurie was my admitting nurse. She immediately noticed how terrified I was and I could see the amazing care-giver qualities that she possesses come out. In a matter of seconds, she had me crying because she told me it was ok to be scared and that I would get through this. She looked at my chart to see who my surgeon, and he saiddddd.."oh, you have Dr. Gutin, he is the best...you are in great hands." Most of this time was a blur, but thank you Laurie for your amazing care and faith. That's about all I can do right now. I'll try to continue later. My big sister, Laurie flies in today to help...can't wait!

The day before.

So we drove into Manhattan today for the final preparations. We met with Dr. Gutin's clinical nurse, Patsy, who is a wonderful person. She does a wonderful job of preparing the patient with facts as well as counseling them on what is to come. She does all of this while adding the perfect amount of humor. While we were with her, she told us that I wouldn't be able to get my head shaved today because during the MRI, the staff would be putting markers on my head that would have to stay on for the surgery. During the surgery, my head would only be shaved in the area that they will be working and after I come home, I can get it cut.

Next we went up to the MRI department. As I said before, the fourth one in the past week and a half. This one would be different because they would be asking me to do several tasks at specific times during the test. First they had me wiggling my fingers so they could map where in my brain the signals are coming from. Next they had me thinking of as many words that started with the letter that they told me. Again, this was to map out where these signals were coming from. Apparently, I had a hard time with the letter F, because they told me they weren't getting a good signal. Maybe it was because I was thinking of curse words and wondering if they knew what words I was thinking of!! The last one was to move my tongue around behind my teeth.

After that part was over, they told me that they would finish the scan and I would be done. I didn't realize how long this would take. After a while, the panic started to set in. I did the best I could to control it, but I finally had to reach down and push the button that would call them. When they answered I told them that I needed to get out of the machine. They stopped the test and brought me out. The problem is that they put this metal cage right over your face and it actually hits my big italian nose! I can't stand that feeling of being closed in.

I have always had issues with claustrophobia. Small spaces where I can't see an exit..or there is no path to it is a problem. I recall a time in college very clearly. It was August before my Sophomore Year at SUNY Potsdam. I was selected to be a Resident Assistant and we had to report to school early for training. In fact, this is where Sue and I met. We were on the same staff of RA's. There were about 15 of us on staff and one day we were taking a tour of our 6 story building. I was one of the first to get on the elevator that would take us to the 6th floor. Someone had the great idea to pile the entire staff into the elevator as a kind of team-building exercise. As the elevator climbed, it became clear that the weight was too much for it to handle and it got stuck. I immediately closed my eyes and tried to breathe slowly. As the time passed while we were waiting for someone to come and help us, it became warmer and warmer in the elevator. At one point, I opened my eyes and saw that the walls were dripping condensation and that nearly sent me over the edge. Luckily, help came and got us out of the elevator and I had a mini panic attack. As I recall, my new friend, Sue comforted me....fast forward about 15 years and she's still doing the same thing!

Anyway, that's what this thing feels like. So the technician took the cage off of me and confirmed that I wouldn't be able to continue. Another tech came in and said I really needed to finish and that it would only be another 5-7 minutes. I dreaded having to go back in. I also needed to use the bathroom which was a good thing. They let me get up and walking helped me calm myself down. I used the bathroom and went back in the room. They assured me that it would be over quick and I got back in. I survived the test which was about 90 minutes long...it is torture that no one should have to endure.

We headed home, stopped at our church for a special blessing from our pastor and arrived home to spend the evening with the kids.

We leave the house tomorrow at about 4:30am and the surgery is scheduled for 7. It should be about 4 hours long. We'll do our best to get the info. out to as many of you as possible. I look forward to blogging again in the next few days. Thanks again for all of the prayers and support. You'll never know how much it means.

Amazing Friends

I've been feeling pretty low this afternoon and evening. Kind of feeling angry at my body for putting me in this place. I know it's kind of a selfish attitude, but I guess I'm entitled. I've been very positive since last wednesday and now the anxiety is growing again so I'm allowing the dark clouds to take over a bit.

Just when I needed it, some wonderful co-workers...no they're more than co-workers...some amazing friends stopped by to show off their newly shaved heads. I've seen Brad's head shaved before, but Jimmy had A LOT of hair! Another co-worker/friend, Pete called while they were here, he is also going bald to support me.

We leave early tomorrow morning for manhattan. I have the fourth MRI in the past week and a half. The thought of having to get back in that machine again is making me sick. Xanax will get me through! After that, we'll head back and make a stop at my favorite hair stylist for the big shave. We will also stop and receive a blessing from Father Chris at ST. Margaret's. I'll spend the rest of the time with my beautiful children.

I'm not sure when I'll get to blog again, but as soon as I can, I will. Love to all that have called/texted/e-mailed/facebooked(is that a word?) You have no idea how amazing it's been reading all of your words of support. I know it's hard to know what to say, but just saying hi has been great.

Hair today...gone tomorrow..literally!

As many of my students have joked with me about...my hair rarely moves. I remember one year when we took Newfield H.S. students to Six Flags. I was talked into going on the Dare Devil Dive. This is the ride where they strap three people together and gradually lift you what seems like hundreds of feet in the air. When you reach the top (and are higher than any structure in the park), one person pulls the cord and you go diving down and then eventually swing back and forth for several minutes. This was probably the first time I've cursed in front of students! When we finally got off the ride, several of my students commented...."Hey, Lasher's hair does move!"

You have to have thick skin to work with High School kids! Anyway, my hair will definitely move tomorrow! In fact in will all move to the floor! I just have to keep reminding myself that "vanity is the first thing to go". It doesn't matter...it will grow back...I hope!

Let the Mr. Clean jokes commence...it's ok, I have a thick skin!

Talking to Maggie.

Most know that Sue and I have two children. Maggie is six and Thomas will be 2 on April 19th. As you can imagine, most of the fears for my future centered around these two innocent children who didn't sign up for this. Thomas is too young to be aware of or comprehend any of this, but Maggie is very aware. We had been telling her that Daddy was sick, but we knew that this was only going to hold her off for so long. Sue gave me a little kick in the butt on Friday, telling me that we really had to talk to her. She even told me that she would do most of the talking if I needed. At Friday's dinner table, Sue had yet to sit down, when Maggie stated, "So what's going on with Dad?" Sue and I looked at each other and knew that this was it. I told Maggie that Daddy has a boo-boo in his head. There's something that is growing in there that shouldn't be and the doctors have to take it out. She asked if I had to have surgery (she is familiar with this because of the hernia repair I had in February). I told her I did need surgery and that I would be away for several days. I also told her that Daddy would look a little different after the surgery to which she did get a little upset, but she bounced back when she learned that Grandma and Grandpa would be coming from Rochester to take care of her and Thomas. We told her that if she had any questions, she could ask us or her grandparents or her teachers at school or church.

Since then, Maggie periodically checks in with e just like her mother. "How's it going Dad? Are you feeling OK?" She is so smart and beautiful (must get it from Mom). I 'm so proud of her. She is such a very strong willed kid, but at times it comes in handy. I love watching her grow and I hope I can dance around the house with her again soon!

My Rock!

It's times like these when you really find out if you've married the right person. I cannot say enough about how amazing my wife is. As in all marriages, you get into ruts where you probably take each other for granted. Dealing with busy professional lives as well as two active children makes couple time nearly non-existent. From the first moment of this journey, Sue has been my rock. She has gone into this amazing mode of taking care of everything. She has spent hours and hours on the phone with doctor's offices, insurance companies, our respective job sites, friends and family. She has dealt with all of our children's needs as well as my needs. She has been at my side at all times. When I wake up in the middle of the night, she immediately wakes up and comforts me in whatever way I need. When I sigh or she senses anxiety, she is there to help me through. In the most dark times, she has convinced me to talk about it out or write it out. Our relationship is forever different and I'm so excited to be healthy again so I can begin to return even a small part of what she has done for me. I can't wait for our vacation in August...it will be a great celebration. I hope all of the unmarried people reading this will look for the very important qualities in a mate that I have found in Susan. For all of those who are already married...don't take each other for granted...remember all of the reasons that you came together and celebrate your love for each other. Life is short.

Let it Shine!

I will be getting my head shaved by the person who has cut my hair since I was probably about 8 or 9 years old. Lisa, was probably 18 years old at the time she was working at Scissor Wizard in the CVS plaza i Bohemia. They had this wheel that you would spin after your haircut...like roulette. You would tell Lisa the number you wanted and if the wheel landed on your number you would get a free haircut. Lisa eventually left there and moved to another salon and I went away to college for several years and had someone else cut my hair, but since Lisa moved back to work in Bohemia (this time at Belissimo in the waldbaums plaza) she has been the one to cut my hair. So it only seems fitting that she would shave my head in preparation for my surgery. She will do this following my MRI on wednesday. I have asked anyone who is interested in joining me in the shaved head club (especially my students) to send me a picture. I have recently found out that a former student, Nicole Bratta's mother owns the Lemon Tree Salon across from John Pearl elem. When the high school students come back from spring break, she will make the salon available for shaving heads and she will collect donations that will be given to the American Cancer Society! YES! I LOVE IT! LET YOUR BALDNESS SHINE! Anyone Else?? My brother Jim is already a member of the club! Thanks brother!

An Amazing Outpouring of Support.

Once the plan was set in place, I finally felt good enough to start talking to people. I started reading some of the e-mails, facebook messages and phone messages. I can not believe all of the people who have contacted us and offered any and all help necessary. People we haven't heard from in months or years had extended themselves. The community support is more amazing than I ever thought it would be. We are blessed with amazing friends, family, co-workers, students. My co-worker Greg brought over several large hand-made cards that were signed by my students. Their messages made me smile from ear to ear. The envelope of money that the students had collected for our family nearly made me cry. Not necessary, but what an amazing thoughtful act. Thank you doesn't seem like it covers how we feel. Everyone's support, prayers and positive words have lifted us out of the deep hole we felt like we were in.

Long Drive Home

The drive home from Manhattan was very long as we were traveling in the middle of rush hour. When we finally arrived home, I was exhausted and starving. Since neither of us could even think about getting back in the car, we had a pizza delivered. I very rarely eat store pizza, because of its fattening nature and it really doesn't satisfy my hunger. I usually end up wishing I had chosen something else. In this case, I had lost 10 pounds over the previous days and I was finally felling calm enough to eat. I proceeded to eat 3 large slices of pizza in a very short amount of time and I enjoyed every bite! I followed it up the next afternoon by eating the remaining 2 slices. No guilt whatsoever!

Vanity is the First Thing to Go.

One of the questions that I had asked Dr. Gutin was whether or not I would be disfigured in any way by the surgery/treament. He described a nerve on the side of the face that would have to be cut and sometimes after healing will sink in a little, but is mostly unnoticeable. Dr. Gutin also replied..."Ahh...you're not that handsome anyway!" We all laughed and I thought nothing of it. Later that evening or actually early the next morning when I couldn't sleep, Sue and I were watching a recorded episode of Oprah. Michael J. Fox was being interviewed and was asked about how he dealt with people looking at him as he deals with his uncontrollable movements caused by Parkinson's Disease. He responded, "The first thing you learn is that vanity is the first thing to go." You really don't care what people think. It immediately hit me that this is what Dr. Gutin was trying to tell me when I asked about disfigurement. In the big picture, it really doesn't matter. Light Bulb moment as Oprah would say!

A plan is Set.

The plan was for my parents to drive us to Manhattan for our appointment at Memorial Sloan-Kettering Cancer Center and then hopefully running to Rockville Center for a third neurosurgeon opinion. That morning, we dropped Thomas at my sister Jacqui's house. She would also pick Maggie up at school and watch them until we were back. When we arrived at my parent's house, my father gave me a very special gift. It was a set of rosary beads that were my grandfather's. I was quite moved and held back the tears. We had a nice car ride. As we got closer to Manhattan, I got more and more anxious. Walking into Sloan-Kettering was sobering. Hundreds of people waiting to register, waiting in the different waiting areas, people who have obviously been treated. As I waited for the registration process, I felt so sick. I didn't like this place. I didn't like what it meant and I didn't like the reasons why people were there and I was allowing the dark clouds to take control again. When we were called in for registration, it was all I could do not to break down into tears. We were directed to the seventh floor to a suite that was filled with people waiting to be seen. We were to be Dr. Gutin's first case of the day. Although we were early, it wasn't long before we were called in. Se and I went in. My parents really wanted to be part of the consultation, but we read and expected that there would be a physical exam first. Dr. Gutin's nurse, patsey, was very kind and advised us to have my parents come in. Patsey asked me to tell her everything that is going on. he questioned me in depth on some items. She has quite a way of comforting the patient using humor and kindness. Dr. Gutin soon came in and introduced himself. Instead of the traditional set-up of patient sitting on an exam table an doctor sitting on a stool or chair, Dr. Gutin pulled a chair up directly in front of me so that we were essentially knees to knees and face to face. He asked me several of the same questions on what my symptoms were and it was hard to talk without crying. He did a lot of the same neurological tests that the other doctor did as well. Dr. Gutin then told us what he saw on the MRI pictures. He said I have a glioma. It is one of a few types and most likely benign. It has probably been there at least ten years and has obviously grown rapidly as of late which means it is considered malignant. He said that it is large and needs to come out soon. Basically the surgery would entail taking out as much of the tumor as possible and mapping my brain which means I would be somewhat alert so that they can ask me questions while they operate so they can stay away from dangerous areas. There is an MRI machine in the operating room and they use it during the surgery to help them. Depending how much they can't get, I may need some radiation or mild chemotherapy afterward. At one point during the meeting, Dr. Gutin had stood up and he put his hand on my back and shoulder and I immediately felt a sense of relief...that everything was going to be ok. While the doctor was still in he room, I announced to everyone that this was where I wanted to be treated even though we had another neuro-surgeon to see later that day. I told Sue to cancel the appointment..."I'm done". After Dr. Gutin and his nurse left the room, I was overcome by emotion...it was kind of a release of all of the tension that had been building. It felt good to have a plan and light at the end of the tunnel. Following the appointment I had to head to another building several b locks away to do some pre-surgical testing. On the way, we stopped for lunch.....it was one of the first meals I had eaten since saturday morning. My mood had lightened significantly. While in the pre-surgical testing, Mom and Sue went up to the gift shop and pick up a bunch of the yellow LiveStrong bracelets. When I tried to get it over my big hands it snapped.....what a bad omen I thought....my mood was light enough to joke around. Sue was on the phone with several friends and family members describing what had occurred. At one point she talked about the brain mapping that would be done on me. I told her..don't worry, it won't be a very big map and it will have a lot of dead ends! Thank God for the gift of humor!

The first appointment. A brighter day.

All I knew is that we were going to see this doctor for some answers..that's all I could deal with. We went to the office and waited for over an hour. I could barely stand to wait any longer. We were finally called into the exam room and waited another 15-20 minutes. Dr. Guttman came in and he asked us to tell him what was going on with me. We went through the whole story. He gave me some neurological exams like walking....on my heals, toes, regular. He had me doing things with my arms, testing strength in my arms, legs, etc. He then turned to the MRI films. It became obvious that he did not like the quality of the pictures (keep that in mind for later). He told us that I most likely had some kind of Glioma, which is a type of tumor that grows over a long period of time, is benign initially but can accelerate in it's growth and must come out. Dr. Guttman had said that he didn't feel that the tumor was actually inside the brain, but outside pushing in and causing the parts to be displaced to other areas. As he showed us the pictures, he also pointed to another area at the top of my spinal cord. He said he didn't really have any explanation for this, but that there was a collection of spinal fluid there...maybe from the tumor pushing things out of the way. He recommended another MRI that would describe the type of material the tumor was made of. We asked a lot of questions and I was able to get a sense that this was most likely very treatable by surgery but we couldn't speculate on the make-up of the tumor until after this special MRI. I left there with some definite feelings of relief. I heard what I needed to hear. It wasn't a death sentence at this point, it is operable and there is reason for hope and optimism. That afternoon was so nice. he sun was out, it was warm and I was able to bring my stress level way down. I sat in the backyard and enjoyed the weather. I prayed a lot that afternoon and I was so cautious not to get to optimistic as we had 2 appointments set up for wednesday. Just that little bit of relief was so nice and much needed. I had the sense though that Sue didn't have that same feeling.

The search for answers and a plan.

On Monday morning, Mom and Dad came over to watch Thomas. Maggie had gone to school. Sue planned to take me to the imaging center for another MRI of my brain..this time with the contrast dye injected inside of me. That morning, Sue had finally contacted Dr. Carlson's office and asked for a prescription for a sedative so that I could get through the test. She had to go pick up the script and hen get it filled, while I sat here with my parents in agony. I took the pills and we left. While waiting in the office, I fell into a deep sleep and Sue had to wake me up when I was called. I made it through the test without any panic attacks and we expected to wait for some answers from the radiologist. They let us wait for a while after the test while the doctor analyzed the results. I expected that he would call us in and tell us what he saw, but he couldn't. He said he would fax the results to our doctor and the neurologist we were going to see on tuesday. We left there with no answers. When we came home, Sue got to work on the phone calls. Before long, we knew that indeed there was a tumor and that we should be making appointments to see neurosurgeons. I don't know how any of this happened but soon we had 3 possible appointments, one on Tuesday with Dr. Guttman from Stony Brook and 2 possible appointments on wednesday, including one at Memorial Sloan-Kettering Cancer Center. Now the search for a plan of action was taking shape.

Mom and Dad

I think it was the Sunday before all of this, Sue had decided to mention to my brother and sister, Jim and Jacqui the symptoms I was experiencing when they came to celebrate Maggie's birthday. I had not talked about it to anyone yet and Sue felt that it was time to spill out guts. I'm glad she did. Sue then told me that we should probably talk to my parents who were in Florida for the winter before someone else did. I agreed and Sue volunteered to tell them what was going on. After she told them, my Mom was very happy that we told them and must have asked if they could speak to me. As Sue brought the phone over I knew felt it coming. When I said hello and I heard Mom's voice, I started to cry and couldn't speak. I really didn't want to do that because I knew that my Mom would be up all night at least, worrying about me. Mom stayed calm on the phone said they would be here for us if we needed them..little did they know that they would be on a plane exactly one week later. When we called them sometime on that following Saturday after the MRI to tell them of the results, they said they would get a flight home when they could. I didn't expect they'd be home the next evening, but I was so glad they were.

Moment by Moment

So the next big challenge was to get through the next two days, with no information other than something was found on my brain MRI. I had to get through the rest of Saturday and All of Sunday before we could take the next step, which was to go back for yet another MRI. All I could think was...how am I gonna get myself to Monday. I knew all of the things I was supposed to do, like "take it minute my minute" "God has a plan" "Stay Positive" "Call upon your faith in God" "This could be no big deal", etc. The reality is that I let the darkness overtake me. I could barely function. The two days are now a blur, but I clearly remember how I felt. Picture yourself wearing a big heavy multi-layered coat that is about 4 sizes too small. You are totally constricted...you can't move freely, you can't breathe freely and you are totally weighted down. This is the feeling of the worst fear I have ever known. Eating was not a consideration. I knew it was important to keep my energy up, but looking in the cupboards and refrigerator made me more nauseous than I already was. By monday evening, I had lost at least 10 pounds. I couldn't believe it when I saw the numbers 187 on the scale. To that point in my weight loss journey, 190 was my lowest weight. The nights were better than I thought they would be...when I finally was able to sleep..it was actually the most relaxed I felt, so when I woke up,I felt pretty good until the heavy coat was forced on my body again. Sue had suggested listening to some cd's of her's. They were cd's of the self-help/motivational spiritual speaker, Dr. Wayne Dyer. I imported the cd, "There's a solution to every problem" to my computer and listened in between naps. There were several key things in this cd that seemed to help soothe me. One of them was thinking about the prayer of St. Francis. His analysis of this prayer was very helpful in putting things into perspective. Nevertheless, I got through those two days....sometimes hour by hour and sometimes moment by moment. My sister in-law took he kids on Sunday which was a huge help. It allowed Sue and I to talk and cry and she was amazing in getting me to open up to her. Maybe this is one of the lessons I am supposed to learn. Why do I choose to keep all of these burdens inside rather than expressing them. What a weekend.

The Search for Faith.

Sue called Father Chris and he quickly returned the call. I answered and he asked me what had happened. I was talking on the phone outside and walked around to the front as I spoke. Funny things you remember....as I'm trying to get out the information to Father, the mailman drove to the house and instead of putting the mail in the box, he decided to drive toward me so he could hand me the mail...so here I am trying to cover the fact that I was crying and walking over to the mail truck! Crazy! Father Chris asked if Sue and I could come over. I told him we would and we hung up the phone. Because we were waiting for the radiologist to call, Sue told her mother to have him call us on the cell phone. As we pulled into the parking lot of the church, the phone rang. The radiologist confirmed that there is something on the MRI, he couldn't say for sure what it is or if it is malignant or benign. He said he tried to call our doctor, but couldn't get an emergency number for him. The radiologist said he wanted us to come in on monday morning for another MRI...this time with contrast. The thought of this made me sick. We proceeded into the rectory. Father Chris was such a great comfort...I realize that more now then at the time. We gave him all of the details and he was very matter of fact about what was probably going to happen in the days to come...One could probably misunderstand his attitude as slightly flip, but I came to understand that he was just so filled with faith, that this came through in this way. He blessed me with oil and prayed over me. It was definitely a comfort and I'm so glad I had the thought to call him......or was it divine intervention?

After the test.

I got up from the machine and immediately looked for Sue, expecting that she would be there at the door where I last saw her before the test. She was not there and she was not sitting in the chair outside of the room. I thought it was strange, but I got up and legs wobbling, I walked out to the waiting room. I knew I would be sitting down and waiting for the staff to make me a CD of the MRI pictures so that I could bring them to the neurologist appointment that I had made. I sat down and Sue came in soon after. She sat down and we waited. The staff told me it would be a little bit until the CD was ready. Then someone called me to the desk and asked me a question...I have no idea what it was...something seemed strange about what they were or weren't saying to me. At some point they brought out the Cd and Sue and I walked out. As we walked out of the building, Sue said she had to tell me something and asked me "If I knew what was going on." I said no and she had a strange smile on her face. She told me that they found something and didn't I realize that she had been crying. I immediately went into shock. I somehow made it to the car and got it. Sue had said that they obviously had seen something on the screen and the tech called someone else to see it and they were talking about it. Sue said she even saw it on the screen. I began crying uncontrollably. Sue asked if I wanted her to go back in and get some answers. I couldn't respond so she went back in. After several minutes, Sue came back to the car and said that the radiologist is not there but on his way. They would have him call us right away. Sue drove home and I only remember crying into my fleece sweatshirt and at times yelling in pain. Sue tried to calm me down through her tears..although she kept it together really well. She was telling me that she would call Dr. Carlson's emergency service to get him involved and maybe get me something to calm me down. As we approached home, Sue told me what I already knew which was that I would have to pull it together so my kids didn't find out. I went right to my room and dove into my bed. I stayed there a few minutes, tried to watch TV to calm my mind down. Sue came in and told me that there was no longer an emergency number for Dr. Carlson's office, that it said to call 911 for emergencies. I was so angry and upset that we couldn't get in touch with him. Sue assured me that the radiologist would probably be able to contact him. I eventually came downstairs and went to the backyard where my kids and in-laws were playing. I sat in a lawn chair for a while and after thinking about it for a while, I told my wife that maybe we should call Father Chris, our church pastor to help us.

MRI #2...what a day.

Sue had advised me to call our family practice on Friday and get a prescription for a fast-acting sedative to help me through the test. Because of my need to not bother people, especially when it's for something I need medically, I didn't really want to call. How would I tell the office staff what I needed? Would they be annoyed by my request? Would they be making fun of me? Whatever other negative self-talk I did to myself. I finally decided to call but not give any details of why I was calling except that I wanted to speak with Scott. I did and the office took the message. Sue reminded me that the office closes early on Friday so I should keep working on it. I said I would knowing that I probably would not call again...and if I didn't hear from them I would just suck it up. Of course I did not hear from Scott so we went to the test anyway. Sue drove me over and we went in. The tech called me to come in and I asked him if my wife could come back as well. He hesitated, but then said, "why not?". I alerted him to the panic attack I had experienced before. I went into the room and sat down. The tech offered to give me headphones with music for this test...I agreed that this might help. He gave me the headphones and I laid down. For the brain test, they lock this cage over your face and because of my big italian nose, it actually touches the cage. This was a problem. The radio was blasting the very fine advertisements of WBLI radio and I closed my eyes. As I was rolled into the machine, I knew I needed to get out and said so. The tech took me out and I tried to calm down. Sue tried to help. One of us suggested different music. The tech asked if I wanted classical music. I said, yes. He put it on and I tried again. I focused on the music and prayer and this time I made it through the test.

Knock, Knock...Excuse me...Excuse me...CAN YOU GET ME OUT OF HERE!

Since I had an MRI in the past, I decided to go alone to the imaging center. Sue's parents were arriving from Rochester for a visit so I didn't want to take her from all of that. This first test was on the neck. I got into the machine and relaxed....I even nodded off a bit. The machine is very loud so it isn't conducive to a restful sleep. As the test continued, I started to get uncomfortable having to stay still. I tried thinking of some band music that I had just been dealing with at school...this seemed to help for a bit. I hen began to get more agitated...I tried praying....the Lord's Prayer...Hail Mary...etc. I began to hyper-ventilate. It was all I could do to not move and slide myself out of this machine. In fact a couple of times, the tech even used the intercom to ask me to remain still. Finally I had enough. I knew I had to get out of the machine and if there was a break in the noise, I would have to yell for help. It felt like an eternity, but the machine finally paused and I squeeked out "Hello?" The tech responded..."I'm coming in...You're all done" When she came in the room she was saying "What's wrong?" I couldn't respond. When she finally got me out of the machine I told her that I had panicked. She told me that she was sorry and that it does happen to people. She also said that the neck MRI is very long..45 minutes. She told me that the brain test would be shorter..about 30 minutes or less. At that point I couldn't imagine being able to get back in that machine. I walked out..legs wobbeling all the way to the car. Upon coming home to my family and in-law's, Sue saw that something was wrong. I told her what had happened and she told me that she would come with me on Saturday for the 2nd test and that she would talk to her psychologist friends at work for a strategy.

Beam me up, Scotty!

Our family practice includes two nurse practitioners who I will often see as it is far more difficult getting an appointment with the doctor. I will often see Scott who is a very nice man. He presents as someone who is a wannabe doctor. He seems to have an answer for everything and is often very aggressive in his approach to medicine. One example of this is the time I went in for what I assumed was a virus that I had in October 2008. There were some different symptoms including a terrible pain on the right side of my abdomen. I suspected a virus because it seemed that all of us in the house had the same symptoms. I felt so bad and it lingered for so long that I decided to go get checked out. Even though Scott agreed that it was a possibly a virus, he seemed more committed to the fact that I had a "Hot" gallbladder and it'll probably have to come out. He ordered a sonogram, significantly freaked me out, and as you would expect it was negative. I decided to use Scott's aggressiveness in this case to get the tests that I felt should be done. Sue and I both went to the appointment. I described the symptoms I'd been experiencing since August. He checked my smile and agreed that there was a droop...or what he felt was a "Bell's Palsey" He said it may have been caused by lyme's disease. He ordered blood work to determine this and he also ordered 2 MRI's. He said he didn't expect to get anything out of it and wondered if the insurance company would agree to the tests. The tests were on the neck and brain. Scott told me that if the blood test was negative for lyme, to make an appointment with a neurologist. I did the blood test after work that day and we were awaiting the office calling us with the authorization #'s for the MRI's from the insurance company. They never called me at work, so when I got home I called them and the office staff reported that the insurance company has the claim in clinical review and that it would take as long as 48 hours. The next day we called again..the office staff reported that they still were unable to get authorization from the insurance company and that Scott was not in to review the blood tests. The following day, I called the office again and the staff reported that the blood tests came back fine, except that I should reduce my intake of carbs. There was still no word on going for the MRI's. Sue and I had become so convinced that it was lyme disease that we were surprised by the results. We researched it on the internet and I seemed to fit into a late stage lyme's disease, except that I had never recalled finding a tick bite, rash, etc. We also read that many times the blood test for lyme's comes out as a false negative. When Sue came home from work that day and found out the result and the fact that we had no authorization to get the MRI's done she immediately called the doctor's office. The staff member was somewhat nasty with Sue as she pressed for the authorizations saying "I just told your husband 10 minutes ago....." It was actually 2 hours before that I spoke with her. Nice, huh? Sue then called the insurance company and within 20 minutes, we had the authorization #'s we were waiting for. I called the imaging center and had to make 2 separate appointments for the tests...one on Thursday, March 26 and the other on Saturday, March 28.

Losing control.

In late February into March I experienced an increase in the drooling. Sue and I both noticed that at nearly every meal or snack, I would end up with food on the left side of my mouth that I did not know was there. It seemed like, speaking was getting more challenging as well. I also encountered a problem with swallowing. When drinking a glass of water at dinner for example, I would often choke on it. Everyone from time to time will drink too fast and inhale some water or food and choke, but this became an almost daily occurance. I also took note that when I would get a mouth full of water/soda, etc. I would have to think about what to do with it. It wasn't a simple routine of putting the drink in my mouth and swallowing. It was like I had to have a conversation with my brain about what to do with the drink next...and then swallow. I then noticed that my endurance was non-existent. Sue noticed that when I smiled, the left side of my mouth wasn't lifting like the right side. I would get home from work on a Friday afternoon and by 6pm, I was so tired I couldn't see straight. I would often fall asleep for a short period of time. It was time to come out of denial and address all of this again. One night while on the treadmill, I was thinking about all of the strange symptoms and wondering what if anything was wrong with me and what I should do. I then started to think about some possibilities and one of the thoughts almost caused me to fall of the treadmill. In fact, I had to stop running and walk it off. The thought was that I had ALS or Lou Gherigs disease which is a terrible degenerative nerve disease where you eventually can't walk, talk, eat, breathe on your own. It is said that your brain still functions, in terms of your thoughts and feelings, but the rest of you is nearly paralyzed and eventually ends in death. It is debilitating for the patient and the care-givers alike. I was so upset about this posssibility....the nerve damage in my face, the swallowing issues, the weakness...this was it. This was not the way I wanted my kids to grow-up...seeing their father deteriorate and die a horrible death. After calming myself down, I knew that it was time to come out of denial and attack this head on.

2009..a rough start.

The year started for me with a virus that included a high fever and nausea. After recovering, I tried to get back to my exercise regimen. I found that 3 miles was about the most I could do and I attributed it to the virus and being out of shape. I also decided to go ahead with the hernia repair. Sue suggested we stay home for February break and try to get the procedure done. I met with the doctor and we scheduled it for the thursday of our break, knowing that our school musical is the following week and I would be very busy following the surgery. The doctor did not see any problem with me getting right back to work as long as I agreed not to be lifting any weight. The procedure went well, except for a problem with my heart rate after the surgery. My heart rate actually went down into the 30's and I experienced sever nausea. The staff gave me the drug efedra(?) and I started to feel better. The doctor attributed the problem with the anesthesia. In the weeks following the surgery I took it easy and eventually attempted to get back to my exercise regimen. I found it very difficult to increase my time and distance on the treadmill. In the last week of February to the end of March a lot of things happened that I didn't even acknowledge until this week.

oye..my hernia!

My next trip was to the Urologist. The doctor examined me and determined that I had an inguinal hernia on the right side. Although it wasn't really hindering my lifestyle in any big way, he suggested I think about getting it repaired before it impacted my life. It would entail an outpatient visit to Stony Brook hospital and two weeks of light activity. I wasn't ready to make a decision on this, so I didn't.

Time to see a Doctor.

Once school began in September, I continued to notice the excess saliva, drooling out of the left side of my mouth and also a lot of spitting when I was directing my students. I also noticed difficulty getting words out....ot that I couldn't think of the word, but that my mouth wasn't getting the words out. I thought it was just my own hypochondriac worries. Sometime in November of 2008, I made an appointment with our family doctor to discuss several things with him. I was having some testicular pain that concerned me and I also wanted to bring up some of the other symptoms that were going on. Dr. James Carlson has emerged in recent months as "in my words" the new Dr. Atkins. He wrote a book about how we are all killing ourselves by eating carbs. Although I know I could never do a low carb diet, I respect him as he has much training in molecular biology and seems to understand nutrition. I met with him and we discussed consulting a urologist. The main focus of our discussion was my weight loss and his views on nutrition as it relates to a low carb diet. He gave me the whole spiel and I listened intently, wanting to learn more about this and his opinions. He was proud of me for my weight loss and suggested changing my lifestyle even more for optimum health. He prescribed that I get blood tests to make sure that my levels were within range since the weight loss. He also encouraged me to get an echocardiogram to check the status of a previously diagnosed "leaky heart valve". Toward the end of our conversation, I told him about the excess saliva and the, spitting when I speak and the difficulty getting words out of my mouth. Dr. Carlson felt that this was most likely due to allergies and he directed me to get some allegra. Even though I knew this wasn't an allergy, I went to BJ's and got a large bottle of allegra and started taking it and as expected there was no change.

I'm full of SPIT!

In August of 2008, Sue and I welcomed our nephew, Danny from Rochester for a few days. It was around this time that I recall noticing that I had an increase of saliva in my mouth. It was like all of a sudden one day it was there. I also recall a strange feeling in my head/ears. Once or twice a minute I would get a "squish,squish" (sorry...best description I can come up with) type sound in my ears/head and my eyes would kind of go out of focus for a second. I remember lying in bed one evening feeling these strange symptoms while our nephew was hanging out downstairs. I even recall tears coming to my eyes, because I didn't know what was happening and I didn't quite feel right. I sucked it up and ignored the symptoms.

I'll start from the beginning

In the months leading up to November 2007, I had become more and more uncomfortable in my own body. Catching a glimpse of myself in a mirror was disturbing and I would try to avoid being photographed. I was over 250 pounds and feeling very unhealthy. I was often sick with colds, bronchitis, pneumonia, etc. I knew I wanted and needed to change. I finally decided to take the first step. I had been successful with Weight Watchers in the past and decided that I wanted to try this path again. I had been taking my daughter Maggie to religious education classes on Saturdays and I thought that this would be the perfect time to do something for myself. I found that WW had a meeting time that corresponded perfectly with the religion class schedule. That day I joined, I was saddened that it had come to this...that I needed help with my eating habits. After sitting down, I realized that the meeting would be run by a male leader, whose name I would come to find out is Roger. I immediately noticed his English accent and also that he had obviously lost a lot of weight (over 130 pounds). He was a wonderful leader who immediately inspired me and off I went. The weight came off fast (10 pounds in the first week). I also began an exercise program. I used our new (Mom and Dad's old) treadmill. I started very slowly...a mile or two walking and eventually a mile or two running. Over the weeks and months I increased the exercise to 6 miles a day...at least 5 times a week. I saw the weight continue to come off and quickly needed new clothes (This was the best part!) In a year, I had lost over 60 pounds and at my lowest weight since at least High School. I had never felt so good about myself. I felt so good about my new found health and what this meant for my future. One of my best days was this past fall, when I participated in a 5k road race at Connetquot High School. My time was an amazing (for me) 21:40 as I recall. I'd never felt better and nothing could have prepared me for what was to come to my new healthy 35 year old body.