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.