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.