Wednesday, June 20, 2012

The Great News

I know it has been a while since we received the great news and I have severely procrastinated updating my blog, but I still want to keep up on making a running history of what has been going on.
Back in May I had an appointment to head back to New York and go through some follow up tests to determine if the Radiation had made any impact on the tumor and its progression. Again through the generosity of many I was able to get a flight booked and I was able to get back to New York in time for my first follow up.
I ended up taking the "red eye" and arrived at about 6:30 in the morning. Wow that was quite a flight, it was the first time I had taken an overnight flight in a very long time. I had forgotten what it was like to try to sleep on the plane. It isn't very comfortable. I took the subway into Columbus Circle and made my way up to Dave and Jen's place. They have continually been so kind to put me up every time I have traveled into the City. It sure makes things much more comfortable because it feels like home. I can't imagine what all of these trips would end up like if I had to stay in a hotel every time, not to mention the expense.  They have been a huge blessing to me and my family.
Because of how the flights ended up I arrived a day before my appointments and was able to meet up with a great friend and co worker Tim Keenan. We spent some time together doing a clinic on some new products for a local sporting goods store in uptown Manhattan. It was really good to hang out and actually do some work while I was there. Nothing like mixing business with fun...OK medical appointments in New York isn't really fun but it just sounded good. :)
On the day of the appointments I started to get some butterflies. I had a good feeling about how things would play out but as I have always experienced around my visits, the nerves naturally kick in each time. You really start to question a positive outcome sometimes. I spent a lot of time praying and searching for strength. As
I got closer to the hospital the nerves picked up and my heart beat started to race a little. I received my scans and then headed over to meet with my Radiation Oncologist. The appointment wasn't for about another hour, so I found a spot in the waiting area next to a window and kicked back , plugged in my head phones and started an episode of the British car show "Top Gear" on my phone. Nothing like cars to get my mind off of things.  It worked...I was pretty calm when I walked into the office.
Dr Yamada walked in and casually asked me how I was feeling. He asked about my symptoms and pain levels, if I was taking much pain medication, etc... Then he proceeded to deliver the best news I have heard in a long time.
He said " Your scans look good" "You are a success story" I was so excited about hearing the great news that our conversation was over before too long, and I was out the door. I got my next appointment scheduled in September and then I called Amy and gave her the good news. Her first question was So what does "good" mean? I thought for a minute and realized that I didn't even get details. Had the tumor shrunk or was it gone, was it still there... what??? I felt like a dope, I ended up sending him a text message and asking more questions. A while later that evening I got some more info, the tumor looked stable and since my symptoms were improving dramatically and there was no new growth, this meant that the tumor had responded to the radiation the way we had hoped. Our prayers had been answered.
Through all of this I continue to have constant reminders and witnesses that I am being taken care of. I know that the Lord watches out for me, he knows what I go through, he knows my anxiety and pain. Best of all he knows how to comfort me. I am reminded that even in times of doubt, he will be there for me to give me strength and confidence. These experiences have helped my faith grow beyond what I could have imagined.
I have made it a point to always be grateful for being alive, for being healthy, for knowing the people I know, the friends I have and the support and prayers they give me.  I am grateful to everyone for the encouragement over the last few years. It has made a huge difference for me. More than anything, I am grateful to my Loving wife Amy for always being there when I need her, she has pushed through this with a smile on her face and is a great example of Faith to me.  

Sunday, May 27, 2012

Life after Radiation

Over the last few months since I have been home from my latest rounds of radiation I have found that life does go on. As I mentioned earlier, the actual treatments went very well. There wasn't any major pain besides the tingling in my left arm. That was something I was learning to get used to. The thing I worried about was the delayed side affects that I was promised would come. They were talking about being very tired and groggy, about having a very severe sore throat, increased heartburn, possible ulcers/holes developing in the esophagus,  and the possibility of loosing function of my left arm. All of these things really weighed heavy on my mind.

After being home for about a week the sore throat had began to set in. It first started out as difficulty swallowing food. It felt like I always had something in my throat that wouldn't quite go all the way down. I remedied this by drinking a lot when I ate.  Think of it as the way a toilet gets clogged. (I know gross right, just bear with me) As I would eat and then swallow, the food would go down to a certain point and then slow down, I assume that is where the radiation fried the back of the esophagus. With the tissue having been damaged, there isn't much saliva in that region to help things flow smoothly. The food would almost come to a stop. I would quickly drink something and then, whoosh!! down it would go. I have found out that some days are worse than others. The pain in the throat is pretty much always there, though the level of the pain differs from day to day, and depending upon how hydrated I am. I have found myself trying to drink as much as I possibly can to ease any extra pain that I might arise.

Before I began my radiation treatments I was having trouble sleeping because of the actual pain in my back. It hurt to roll over in bed, it hurt to lie down sometimes. Since the radiation, I have found that some of my symptoms have eased. I am not taking pain pills for constant pain, only when I really need it, this includes not only my prescription pills but Aleve and Advil too. I have been able to sleep through the night and although I still do wake up in the morning with a very stiff back, once I stretch out and get moving, I can manage quite well.  Over all I should be doing much worse, I have been blessed because of the many prayers that have been offered on my behalf, for that I am grateful. I honestly have no other explanation for the great results I have experienced. I know prayer works miracles I feel blessed to have such a miracle take place in my life.

Sunday, April 1, 2012

The Rest of Radiation

Thankfully the rest of my radiation treatments went quite well. Nothing more that the usual trip across the island over to York Avenue and then up to the 4th floor to wait my turn. Some days they would get me right in, and others I had to wait for some time to take my turn. It was by this time all pretty routine, I could finally find my way around the hospital maze and I would recognize and greet the different workers which was fun to do.

On Tuesday of that week I ran to my appointment early, I was hoping to get in quickly at 2:00 because My amazing wife was flying into JFK airport at 3:15. I knew she could make the trip in from the airport to the City on her own using the subway system but I really wanted to be there to pick her up. Luck would have it, I got in early and I even finished early, No delays. I ran out of the hospital with anticipation to see her. I got on the bus that would take me up to Lexington Ave, where I was going to get off and run a few blocks down town to catch the subway that would take me the rest of the way to JFK. Traffic was getting bad and we had one little old lady that needed the bus driver to load her up on the wheelchair lift. I knew that was going to take a little while longer than I had so I got off and ran (who am I kidding, I walked very fast) the remaining 8 or 9 blocks to the subway station. I knew Amy had already landed and I was going to get into the subway with no cell reception. I sent her a Text letting her know I was on my way but that she would need to wait at the airport until I got there. The transfers between stops all the way to the airport went really smoothly never having to wait more than about 2 mins for the next train. It was very smooth.

Once I got to the end of the line and I transferred to the Air train I was able to call Amy. She was patiently waiting out on the platform for the Air train. The doors opened as we arrived and she hopped right on and off we went!

I was so glad to have Amy there with me. It was a comfort to me, perhaps not absolutely necessary in some eyes but for me it was a need that had been fulfilled. 

I really wanted Amy to meet Dr. Yamada, he is such an amazing man. on my next treatment visit she was able to meet him and talk to him for a little bit. To me the man was starting to feel like family, and to have the one person who matters most to me meet him, meant a lot. 

One of Dr Yamada's nurses was gracious enough to give us vouchers to go eat in the cafeteria at the hospital. For Amy and I it was a blessing. the food was great and it didn't cost us anything. (for those of you who don't know NY is kinda expensive). What a great cheap date, get radiated and then go down and eat in the hospital cafeteria with your lovely wife. Honestly it was fun for us. 

For many people whom I have spoken with, they all had assumed that the whole treatment thing would be excruciating and that it would be a horrible experience. For me it didn't seem so bad, for the time being all I had to do was lay there (OK, I was restrained in the process) and hold still. There were times where I was very uncomfortable but, I was never in any extreme pain during treatment. The side effects would be the painful part but they wouldn't take effect for at least a week or two after the radiation was completed. So for now I was doing great and I was just imagining that we were on a long awaited vacation. Maybe it is kind of twisted to think that a medical treatment trip was a vacation, but we will take it however we can get it, we were going to make lemonade out of lemons!  

Wednesday, March 21, 2012

This year's Radiation Treatment

Well I am writing this from the comfort of our home in Utah, I got a little behind just getting caught up in everything that has happened over the last week. New York was a rush! What a place, there is just so much going on, it is a place that I found my self getting used to (just barely) over the few weeks that I have spent there. I know one thing for certain, I am not a city boy. I will go for the vast expanses of the open desert and the crisp mountain air of the Rockies any day over a compressed city.  Nonetheless New York is a city I will forever be grateful for. It will be a city that will have given me renewed life.

I started my treatments out on Monday, it was pretty easy. I took the bus to the hospital across town from the west side of Central park over to York Ave and 67th. I found my way up to the 4th floor of the hospital and checked in at the Radiation treatment desk. Within a short period of time the Nurse came out and spoke with me asking how everything was going and if I would need anything from her before the treatment. I was called in to change and get ready for the first round of Radiation. 

I got up onto the table and they brought out the all too familiar plastic mask that they had made for me when I had been there about a month ago. they lined me up and then they placed the mask over my head and shoulders. It was very restrictive and tight. I couldn't move if I tried, it was tight enough around my neck too that it made it difficult to swallow. this is all to keep me lines up in exactly the right spot. The black lines on the mask are where the alignment lasers are to match up to. If I were out of position by even a little bit the radiation would be given to areas that are very sensitive and could be damaged , such as the spinal cord.  I think I would rather be restricted in such a manner for a short period of time, than have my spinal cord fried causing much worse issues.

The treatment starts out with some X-rays being taken and then using those to line me up with the computer modeling of the treatment plan. Once the adjustments are made, the large head of the machine rotates around me into various positions. In those positions the radiation is delivered. I don't feel anything but I hear a loud buzzing noise. This goes on for a few minutes. The whole thing lasts about 20 mins, sometimes a bit longer. I don't mind too much though because I am just laying there, they even pipe the Pandora internet radio station of my choice through the room.

Once it is all finished and they "unbolt" me from the table and remove the mask it takes me a second to sit there and regain my balance. Because of how tight the mask is I end up with little polka dots all over my face. I look kind of weird in the mirror because of it.

I left the hospital and man it was a beautiful day outside! I rode the bus to the east side of Central park and then got off and decided to walk through it. I meandered around enjoying the amazing place that it is. I found that over the course of the week I spent a lot of time in the park just to get away from the bustle around me. I stopped somewhere in the middle and lounged out on some of the rocks listening to some "Counting Crows" on my MP3 player.  I almost fell asleep in the sun, it was great.

Well about an hour after the treatment I had just done, I started to feel some extreme discomfort in my left arm. I wasn't sure what was going on. It felt like someone squeezing the whole arm and very sharp pins and needles. I wasn't supposed to be having any radiation side effects until about a week after the treatments were done. I thought the feeling would go away, it didn't. This lasted for quite a while and I was trying hard to not let it get to me. Once I made it back to uncle Dave's place I went into the room I was staying in and wrote a quick email to Dr. Yamada detailing what was going on and what he suggest I do.

Within 30 mins of the email I received a phone call from him, not from his nurse or another assistant but from him personally. This is the type of person Josh is. He is so concerned for you he will reach out to you whenever you need it, he tries to make himself as available to talk to as possible.

He first calmed my nerves by letting me know that this sounded like good news. What?! OK so the pain wasn't the good news but the fact that I had this sensation in my arm meant that the treatment had irritated the tumor that is tangled in with the nerves that go to my left arm, and that inflammation was occurring. The inflammation would be temporary but it was a reaction that was letting us know we had hit our target!

Sunday, March 11, 2012

The start of the big week

So tomorrow is the start of all of my treatments. Today I spent a lot of time after church, relaxing and getting my mind off of things. To be completely honest, I am not really worried about this right now. I am really at peace with what is going to happen. I have done a lot of praying in preparation for this week, and there have been so many prayers offered for me. I have an Army of support behind me, both here on earth and beyond. I feel so blessed to be going through this. I have learned so much, I have seen so much good in people, it has been fantastic. I hope one day to be able to return the favor.

I was able to video chat with Amy and the Boys this afternoon. It was hard for me because Ethan and Wade both asked me to come home, they told me they missed me. I still have a whole week to be away from them, I really do miss them so much already. I can only imagine how hard it will be for them when Amy leaves to come to New York. Mom and Dad Hirschi do such an amazing job with taking care of them, and we are so grateful to have grandparents so close. I think the one who will have the hardest time will be Amy once she comes out here.

I feel like this week has been a long time coming and I am glad it is finally here.

Monday, March 5, 2012

Mountain Therapy

The other day I had the opportunity to spend some time in the mountains east of SLC up Little Cottonwood Canyon.  The company I work for, Petzl, places a high priority in education and making sure that we help educate those using our products. What better way to do that than to get out and use the stuff ourselves.  For this day the mountains were my office! We climbed the "Great White Icicle", this isn't a really difficult route but it sure was fun!
Brandon, Tom, and I 

I was so excited to get back out on a rope, Amy was a little apprehensive about the whole thing because I hadn't been climbing really, since my first surgery in 2009, but I was counting down the days until we were to go.  When we got up the Canyon we hiked down to the river bed and crossed the low river hopping across rocks, I wasn't so graceful and my foot slipped off of one of the last rocks dipping my foot into the cold water. Thank goodness for Tom's waterproof climbing boots he let me borrow! The funny part was Tom (our sport division manager) had just finished telling us to be careful not to slip in, oh well. As we made our way up the other side of the bank and further up the slope to the base of the ice we saw hoof prints in the snow, we weren't quite sure if they were moose or deer tracks because they looked a little disturbed in the snow, regardless it was neat to see.  It was really cool to be up in the trees with the snow all around.

Brandon on belay
Brandon and Tom
We made it up to the base of the climb and wow, I realized how out of shape I really was. I had to take a break or two on the way up and made it to the start of the climb panting heavily. After a short break and some hot chocolate from my thermos, we proceeded to gear up. Crampons, ice tools, ropes, carabiners, ice screws, cams, helmets and gloves, odds and ends, and we were ready to start climbing. Tom began by giving us some basic heads up on techniques and pointers to make the climb more enjoyable. Brandon (our International accounts specialist) started belaying Tom as I stood back and minded the coiled rope.

Tom took off like he was climbing stairs, He is really good at what he does and he is also a great teacher and friend. He explained a lot about using the different ice tools that we took with us and how each one swings a little differently. While down low he demonstrated the different techniques of placing ice screws and which kind of ice to look for and which kind to avoid. Once he got up to the top of the first pitch of the climb, he prepared an anchor to belay us from the top. Brandon and I got ready and once we were on belay we each made our way up the ice. I felt like a little kid! I was having so much fun! I was with great people, in a beautiful place doing what I love, and getting paid to do it, could it get any better?!?!
Tom in mid sentence,
He is always that excited

Tom kicking away on pitch one
Tom up the second pitch
After climbing the two pitches to about mid way up we were running out of time and decided to head back down, by this time the wind was blowing pretty hard up the gully, the snow was swirling like crazy and it was beautiful, I wish I would have thought about getting a picture of it.

We prepared to rappel down to the top of the first pitch, we double checked each others gear and I set off over the edge of the rock. Crampons on ice are great but on rock they tend to slip around a lot, they are like bowling shoes on ice. Once I got used to the footing, it was just like any rappel I had done rock climbing. I had gotten cold fingers a few times during the climb but I didn't really notice it much.  Brandon came down after me, he reached the top of the first pitch and we started chatting, waiting for Tom. 

Over the last few months I have dealt with some pretty discomforting pain due to my tumor. I have been taking the least amount of pain meds to handle it. I really don't like feeling drowsy or loopy. The pain is noticeable throughout the day, bearable but it is still very much there. 

As I was talking to Brandon I stopped and realized, I was not hurting! I couldn't believe it. I shrugged my shoulders and wiggled my back around I moved and contorted and still there was no pain. I didn't understand it. I came to the conclusion that it was due to the euphoria of being back up in the Mountains and the Natural high that I was experiencing. It was a good feeling.  
This was "Mountain Therapy"

Thursday, February 23, 2012

I didn't know what I had signed up for

When I was told by the Doctors about the Myelogram it seemed like such a simple procedure. Once I went in for the procedure it confirmed to me that it really was going to be a breeze. I laid face down on the table and had my chin propped up on a pillow. My ankles were strapped to the table for when they would tilt the table to help the contrast move up and down my spine. I was actually quite comfortable.  The Doctor and nurses were great in explaining everything to me. Step by step they would let me know what they were going to do next.

As my gown was opened up I could feel the cold air in the room on my back. The Nurse then washed my lower back 3 times in preparation for the puncture. A few sharp pricks and a slight burning sensation followed.  I could feel them sticking the needle in a few more times but before long it was really numb. The only thing I could feel now was their hands resting on my back. I was't quite sure when they were going to stick the "big" needle in and start the actual injection of the dye. Suddenly I felt some pressure in my lower back and they began to let me know that I might feel some strange sensations. I didn't want to think about what they were actually doing because the thought of having someone sticking a needle in between my vertebrae and into the membrane that surrounds my spinal cord really wasn't something I wanted to spend a lot of time contemplating. I found my self searching for something to think about. Was there a quote I could repeat, a song I could sing to myself? I thought about the words to the song "I need thee every hour", the Chorus rang over and over in my head. I felt very calm throughout the rest of the procedure. I really was more of a mental game than anything else, It wasn't really painful it was just disturbing to think about what they were actually doing.

The narrations began again from the doctors as they drew out spinal fluid in preparation to inject the contrast or dye. Before I knew it the needle was out and they began tilting the table. There were a few up and down movements and some slight discomfort as the blood rushed to my head in the downward position, but before I knew it that part was done, and they had me roll over 3 times to help with the coating process.  I was supposed to stay laying down for at least an hour after the puncture so that the "hole" could start to clog up. They wheeled me around the hospital from one place to another so they could then take the scan of the spinal cord, which was the whole reason for the procedure.  I of course was flat on my back looking at the ceiling.

Even thousands of miles away from one hospital to the next every hospital has ceilings that look the same! The issue I was having was that my eyes were trying to look around too much. Going around corners and moving without seeing what was in from of you, only what was above you, was making me a little nauseated.  After the CT scan which was a piece of cake, we went in for the Simulation that I had described before, Everything else seemed to go very well. At least I thought so.

I was told that I might get a headache after this procedure, I had no clue what a "Post-dural-puncture-headache" or PDPH was. I really had no clue as to the possible severity of the headache.  Right after the procedure I felt a little uneasy and nauseated, I went back to the apartment and took it easy, yes there was a slight headache but nothing worth noting.  The next day, everything was great! No problems or headaches throughout the day. I thought the worst was over. We even went to visit the Intrepid aircraft carrier museum.  We walked all over Manhattan and I felt fine. It was Sunday Morning that I started to feel pretty rotten.  I went to a portion of Church before heading back to lie down. I was getting worried because I was flying out that day.

Once we hit the subway to make our flight out of JFK I thought, "OK I can make it no problem" by the time we actually made it to JFK I had no idea how I was keeping my lunch down. The Nausea was unbearable. The headache was increasing to a point I had never experienced.

I have suffered from headaches ever since I hit puberty, Migraines that would render me a sobbing baby. I have learned to deal with them, getting them maybe 1-2 times a month or less and have gotten to the point that the debilitating ones happen only a few times a year. In my entire headache history, I have never,ever experienced a headache as bad as the one that was mounting.  To say that I felt like my head was in a vice was an understatement. My skull felt like it was going to burst open at any moment. Before the plane even left the terminal I had the barf bag in my lap and my head buried in my hands. I knew I was going to loose my lunch any second. The Flight was expected to last just shy of 5 hours.

When the scriptures tell us to have a constant prayer in our hearts I took that to the absolute literal meaning. I prayed non stop for the whole flight, most of my prayers consisted of just a repetitive "please, please, please" I couldn't formulate anything else in my head. It actually hurt too much to think. I didn't know how I was going to make it. With my head on my Dad's shoulder I just kept my eyes closed and tried to remain calm. The time passed so slowly, that flight felt like it was never going to end.

I could feel when the plane started to slow down and the nose dipped towards Terra Firma. I knew I wouldn't have much longer to wait. Before I knew it the wheels hit the ground and we were taxiing to our gate. It was hard to stand up because the pain got worse when I did. Once the door was open and the jetway cleared we were out the door. It was good to feel the solid ground. For the last few hours between the subway, JFK sky train, and the airplane, my body had been in constant motion, making the motion sickness worse.

Walking out of the terminal, I got on the phone to Amy and tried to summarize what had happened for the last few hours trying to sound as up beat as I could. I told her I would see her just as soon as Mom came to pick us up and get me home. I walked out into the freezing night air and across the road in front of the terminal and Saw that Mom's car was waiting for us. I was relieved that we wouldn't have to wait for anything other than the ride home. Just as I looked up I saw Amy running towards me! I was shocked. I had no clue she was with Mom ready to pick us up. I stood there on the sidewalk and just bawled. It was so good to feel her arms around me, after just a week they almost felt foreign, yet so familiar at the same time. We just held each other.

The ride home started the whole motion sickness rolling again. The headache was still the worst part of it all and it made it so much easier for the nausea to set back in. By the time we made it back to Mom and Dad's to pick up Ethan and Wade, who were with Jessica, I was again ready to die, my outsides were in and my insides were about to come out! I could barely make it into the house, when I did I collapsed on the couch with my face buried into the cushion, trying to muffle the crying. I think I really worried Ethan and Wade because they came up to me and offered their cookies to me to make me feel better.

I ended out the rest of the evening vomiting my guts out at Mom and Dad's. It was the gut wrenching kind that leave you gasping for air and your body won't let you breath because of the violent stomach contractions. It was no fun at all. We did make it back to our house that night, and Amy made me a bed right next to the safest place in the house, the toilet. I had the most painful restless night I have ever had. There wasn't anything that I took or did that would help the headache, I was told to avoid Aspirin, Aleve, Advil, and anything that could thin the blood, this could prove dangerous after the procedure. I then remembered that they had mentioned Caffeine could help.

My loving super woman of a Wife made an early AM trip to Walmart to find me some Mountain Dew and some Excedrin Migraine, both of which contained Caffeine. I couldn't take the Excedrin until we called the Doctor in New York to get approval because it also contained Aspirin. By about 5AM I was finding some relief and I was able to snooze off and on for about 2 hours.

The rest of the week was spent laying down to avoid the painful throbbing, or a combination of sitting and lying as the week progressed and I started to feel better slowly.  I was able to work from home  for a day and a half  until I was able to be up on my feet for most of the day. It had been quite the week.

Looking back at it all right now, it is easy to say "Well, I made it through". I surely don't want to go through that ever again, but as this is now an event that is in my past, and I am alive and well right now at this very moment, I now know that I can make it through horrendous things and come out on the other side, maybe hurt in someway or another but hopefully stronger because of it, knowing that with God I can do hard things.

Saturday, February 18, 2012

Myelogram and simulation for Radiation

We were informed that the insurance had accepted the request for approval on the Myelogram (click link). We were to come in Friday morning to have the procedure done and then following that we were to go into simulation, or preparation/setup for the upcoming treatments. This included being lined up for another CT scan and having a mask made that would cover my face and upper chest. This mask comes in after being warmed up in water making it soft and malleable. They then lay it over you and stretch it over your face and chest, locking it down to the table. It feels like you have had a warm wet towel over your face. It is perforated to allow it to mold without air pockets. Once it starts to cool down you can feel it restricting your movement. It hardens and becomes the brace that will immobilize you and position you exactly in the same place on the table every time you lay down there. Along with the mask they gave me another Tattoo dot on my chest for laser positioning reference. Everything is ready for me to return in a few weeks for treatment! Bring it on!!

Tumor board Results

The Tumor board met Thursday morning, my appointment to meet with Dr. Yamada was at about 1:00pm. Dad and I decided to take the uptown open air bus tour that morning to use some time up before the appointment. Luckily most of the buses have their winter "covers" on, basically just an aluminum frame with plexi-glass over it, because it started raining pretty good. The tour went well, we passed through the upper west side and Grants Tomb, then through Harlem and over to the east side of Central Park. That is where we got off the bus to walk the few blocks further east to the Hospital. Well a few blocks turned into quite a few blocks, the rain was coming down hard now. With hoods on, hands in pockets, and shoulders shrugged in trying to keep the wind out of our collars we kept up a brisk pace trying to make it there in good time. We actually made it there by about 1:15pm. That didn't seem to make a difference because as usual we ended up waiting for about an hour plus.

Josh popped in the door and with a very bright attitude he proceeded to confirm to us that the entire tumor board agreed with the conclusion they had reached the other day. We would be doing JUST radiation no Surgery. We would be doing a high dose low frequency treatment. My previous treatment was a low dose high frequency treatment. I had done 30 treatments of radiation. This time we would be doing 5 treatments of a high dose, a good blasting! This meant that instead of a months worth of treatments like we had initially anticipated, we would be doing just ONE WEEK!!! I cannot believe the blessings that we have been given. I have seen miracles unfold here in New York. We went from having no hope to being given a new hope for a long future and a better appreciation for life.

I am scheduled to go back to New York for treatments starting on the 12th of March. After my treatments I will go back for a follow up visit about 6-8 weeks later. I don't think this could have gone any better, an I honestly couldn't ask for more. I have noticed our Heavenly Father's hand in everything that has gone on here.

Thursday, February 16, 2012, FANTASTIC news from New York

With Lots of options on the table, from clinical Chemo trials to image guided Radiation to Surgery by some of the worlds finest, our spirits were lifted. Deep down we knew that all would eventually end up OK. The "how" was the missing piece. Through a lot of faith and prayers by more people than I can count, The Lord has answered our prayers. Sometimes we just need to take the leap of faith and move forward not knowing beforehand what we should do. Once we take action in a direction that we feel guided to it is then that we see the blessings unfold, an they have.
In speaking to Dr. Yamada we were informed that we needed to get some extra scans done so they could see exactly what they wanted to see. He mentioned that his initial impressions were that we would be doing radiation possibly assisted by some surgery to gain better margins around the spinal cord. Surgery was something I thought might happen, and I had come to terms with that. The best part was that we actually had a doctor that agreed there was something we could do to take care of this Cancer.

Our first meeting started at about 8:30am we did a lot of waiting and then we did more waiting at each doctors office. I believe that is something that is a requirement, you go to a doctors office, you wait, it seems that this is the same all over from one coast to another. No fun at all.

After the MRI we went back over to Dr. Yamada's office and waited to hear what he thought about the new images. He came in and told us that he thought we would have no problems doing more radiation, he said that after looking at the reports of my previous radiation treatments we still had room to work in terms of dosing. He mentioned that referencing the PET scan I had taken in SLC, the area of the tumor that was active was further away from the spinal cord, so the highest doses would not affect the cord directly, just the lower doses. Just after he asked us if we had any further questions and we were getting ready to leave, Dr Bilsky, the Neurosurgeon came down and wanted to see the scans too. Both of them consulted and spent about 15 mins looking over the scans, once finished they both came back to speak to us. Even though the actual Tumor board meets on Thursday mornings and it was only Tuesday, the two of them said that they felt like we could easily do this using radiation only, without the need for any surgery!

Wow, My spirits were boosted. My eyes started watering and I could barely hold back the emotion. In those words, All the prayers and thoughts offered in my behalf would not go unheard. The Tumor board will be the final word on Thursday and we would find out more about the schedule then.

Monday, February 13, 2012

New York

Well, I am writing from New York. I got on a plane this morning and we (Dad and I) flew from Salt Lake direct to JFK. The flight went well and we made it without losing anything, (we didn't check any bags on.) We had one heck of a taxi ride from the airport to Columbus Circle, which is near where Uncle Dave and his family lives. The Driver was either go or stop! I felt that the taxi ride was more rough than the flight was, and the pilot said we had 20 mph crosswinds on arrival. I am sure the driver had a foot on each pedal, sometimes using both at the same time. Well after getting out and being grateful to have solid ground under my feet we made it up to Uncle Dave's place. Their sweet family was expecting us and were so generous with putting us up for the week. We spent about 30 mins there before we left to go see my cousin Brandon's basketball game. Following the game Jen had such a great dinner prepared, Ribs, asparagus, green beans, foccacia bread, baby potatoes, tomatoes, and burratta mozzarella cheese! It was amazing! This followed by great conversation with Uncle Dave and Dad, wrapped up by a fantastic reading of "Green eggs and Ham" by my little cousin Lauren, made for a full day that will be one to remember.

This week has been one that I knew was coming up quickly. Now that it is here, it feels surreal. In the morning I will go and visit with Dr. Yamada, along with a few other doctors and surgeons. This is all to prepare the best base to work off of in coming up with a game plan for next month.

Leading up to this week I have been trying to get a hold of some extra pain. It was a pain that would radiate from my back and down my left arm. At first it was manageable, but after some time it got to the point where I had to do something about it. In speaking with my Medical Oncologist and the pain center at the Huntsman, they put me on some non-narcotic pain meds that are supposed to change the way my brain sees pain. Well, in weeks I was able to sleep all the way though the night. The only issue is that every 3 days I am to increase the doses to a point where I am pain free. Until now I have been taking them at night, I never noticed any side effects. Yesterday morning, was the first dose increase, well it didn't treat me very well. It made me really loopy and sick to my stomach. I was hoping that my body would get used to the dose before I got on the plane. Thankfully I was able to sleep some on the plane. The only side effect that I noticed was some light headed feelings. The pain is getting more manageable though. For that I am grateful.

Monday, February 6, 2012

Plans set in Motion

The last few weeks have been quite a roller coaster. We have seen the tender mercies of the Lord in our lives. We have seen his hand in everything that has happened. Things are "falling into place". I was contacted by Dr Yamada and we were given renewed hope, he told us he had dealt with many cases like mine, people who have had surgeries and previous radiation to the tumor site etc... He said we still have options. My chances in my eyes have skyrocketed! We have arranged to go to New York to visit with the Team at the Memorial Sloan-Kettering Cancer Center.

Through Friends and Family I found that news travels like wild fire! We have had so many people contact us asking how they could help. It is so comforting to know that when times get tough people reach out to help. Right off the bat Frequent flier miles were donated so I could get back east to New York. So Many people came out and offered their earned miles so we could have that worry taken off of our shoulders. There have even been monetary donations made by many. My co-workers have been fantastic! I have such a great support group at work. They genuinely care and are some of the most selfless people I know.

There have been people at work who have gone to great lengths to see if they could donate their hard earned Paid time off to me so I could have the time to go get treated, and not have to worry about the missed hours and wages. Something like this didn't exist in our employee handbook, but with such a desire to help, a company policy was created within a very short amount of time that would allow one's earned PTO to be donated to an employee going through a medical hardship like this. I have never known people with such great heart! I am a part of a workplace "FAMILY" who looks after their own. I am so grateful to them, I don't quite know how to express it.

I am scheduled for an initial consultation and a series of tests to happen in New York During the week of the 13th of Feb. I am so blessed to have Family that lives in Manhattan who have offered their home to me for as long as it takes. Like I said earlier, everything is just falling into place. I am benefiting from the hard work and planning of many to be able to help me get to where I need to be to be treated by some of the worlds best doctors.

After the initial visit I will come home for a week or two while the Doctors set a game plan. I will be in touch with them and I will find out when the treatments will start. The plan is for me to be out there for about a month to be treated, this could change depending upon the game plan that is decided upon.

Through all of the goodness that we have seen over the last little while I have come to know that, People truly have a desire to help each other. When we work together great things happen.
Thanks to all for the thoughts, prayers, donations of every kind, and genuine Love.

Friday, January 20, 2012

Time to catch up: Bad News

Wow, it has been a long time since I last updated my blog. In my defense life has been so good to me. I have been enjoying myself too much that I haven't made time to come back here to share anything new. The Last year has been a great one, I stayed out of hospital stays for a full year! We went fishing, camping, hiking, and spent a week at Bear Lake with the Family. I realize how blessed I have been to be able to take part in all of these things. Ethan and Wade have grown like weeds and it has been so much fun to be able to watch them play together and to be able to play with them. I am so blessed to have such a great little family, especially a fantastic loving wife. I don't think I will ever be able to express to her how grateful I am to have her in my life, she is truly my guardian Angel. She watches over me and keeps me in line, she loves me for who I am.

I am really starting this up again because the Doctors have found recurrence of my tumor. Once again this stubborn thing just doesn't want to let go, but neither do I. I started having some pain in my upper back that slowly got worse. I, of course trying to keep hope and think of the best, tried to ignore the pain, reasoning with myself that it was due to strained muscles from the hiking I had done earlier or the extra lifting I had done, or something else, something, anything but cancer again. It finally got to the point where the pain was too strong and had lasted too long to be "just" something simple.

I called and bumped up my regular scans to a month earlier than they were scheduled. They got me in within the next week and I underwent the regular barrage of scans that I had gone through every 3 months for the past 3 years. The worst one of them is the MRI. I have gotten to the point where I can almost fall asleep during an MRI but so do my elbows, my backside, and the back of my head. For those of you who are lucky enough to have never had an MRI they don't have a padded surface to lay on. They put down a "blanket" before you lay down but that is about it. During the hour and a half that you are in the tube, you cannot move at all. So obviously everything falls asleep. Anyways... I finished the scans and went home for a weekend of waiting, and trying not to think about what the results might reveal.

Monday morning, the 9th of Jan Amy and I entered the Oncologist's office and tried to stay positive. The results came back showing a small mass growing on the spine around the T1-T3 areas. This is the same place as before. They were positive and encouraging, reminding us that it was small and according to the last scans it looked like it was growing very slowly. They said that we had options for treatment but we found out that my Neurosurgeon didn't think that surgery was a good one because the tumor was located deep enough that they would have to go through the chest to access the spine from the other side. This would include moving organs and other vital parts out of the way. This was too risky considering the fact that there was no guarantee they could get all of the tumor out. They all recommended that we do more Radiation.

When I went in to meet with the Radiation Oncologist, I was hopeful. I Felt like we were going to make it out of this somehow. My hopes we shattered when after much discussion she told me that they wouldn't be able to deliver high enough doses of radiation to the site to effectively treat the tumor. She told me that because of the Radiation treatments I had before, the cumulative radiation dose would damage my spinal cord, possibly causing vital nerve damage that could lead to my organs shutting down, and eventually death. It was then that she told me that she recommended I go home and enjoy the quality of life that I currently have.

In my mind I knew what I heard but I really didn't believe what I had heard, I had just been told by a medical professional, I was going to Die!

I sat there and looked at the floor for a long time, I didn't know what to say... the Doctor kept talking but I wasn't paying much attention. I just kept shaking my head. I never thought, through all of the last 3 years, that I would have someone tell me I was going to die. Sure I often thought about it , "What happens if this is what ends up taking me Home? What would happen to Amy, Ethan and Wade? Would they betaken care of?" All sorts of thoughts go through your mind and you try to kind of ready yourself if that situation were to ever come. There have been times in the last few years that I have actually been at peace with the thought that this might kill me. But to actually be sitting in a Doctors office, and to hear that this tumor would really do it?!?... I had cold sweats come over me and I really started to feel a little queasy. I was glad my Dad was with me during the visit, I had almost decided to go by myself. That would have been a disaster.
As we walked out of the office there were nurses that came by and tried to offer their comfort, I was grateful for their concern but it wasn't helping. I didn't know what to think, or feel, or even say. I didn't know what I was going to tell Amy. I was trying to find a way out of this, out of the sentence I had just been given, the fear had hit me so hard.

Dad offered to take me to lunch at the cafeteria in the Church office building. We drove down the hill towards his work and Dad got on the phone to Uncle Dave in New York. He mentioned that we would probably want to get in touch with Josh Yamada for a second opinion. Josh is a Spine tumor specialist in Manhattan that we were connected with through Dave just before we started Radiation treatments a year and a half ago. Dave told us he would get in touch with Josh and have him call me.

In the Church office building after we ate lunch we went up stairs to Dads office. I sat there looking out the west side of the building directly across from the Salt lake Temple. As I sat looking at the Temple I felt a calm come over me, I was going to be alright. It was from this moment that the Lord started showing me little signs that he was aware of my fears and thoughts, he was in control of this and he would make sure, in the end, things would be OK. Dad asked a co-worker, Elder Gibbons in the Temple Dept to help him give me a priesthood blessing. I was overwhelmed by the words spoken in the blessing. I felt like the Lord had his arms wrapped around me. As we were walking out of Elder Gibbons office, we came to a bank of 6 elevators. In the church office building the elevators have scriptures that are posted up on the walls for you to read as you go to your floor. They are different in every elevator. The elevator that happened to open for us had a very tender scripture on the wall for us to read.

Proverbs 3:5-6
Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy paths.

Some might call this coincidence, not me, I know that the Lord cares for us and He knows our Pains and Sorrows, He is always there to let us know it. He was there for me just when I needed Him. I look back over my life and especially over the last 3+ years and He has always been there for me, to carry me when I couldn't walk any more, to boost my spirits when I was down, to hold my hand when I was alone, and to give me hope when I had none. Many people I know are not "Believers", that doesn't change the way I feel about them nor the fact that He is real, I have had too many special experiences for it to be coincidence, I have come to a knowledge of it being real. He waits for all to find out for themselves that He is real and He loves us.