Thursday, May 27, 2010

This is it!

Thanks to all, here we go!!! See you on the flip side!

Tuesday, May 25, 2010

Time with Family, Friends and support from Loved ones.

The last few days have been busy ones. Trying to cram everything into the allotted time frame we have before the surgery. I have tried to make time fore everyone, but more touching to me is that everyone has been trying to make time for me. Saturday I spent time up at the Gun range blowing off steam with my brother Mike and great friends. It was a much needed release. That evening we went to Amy's dance recital, where all of her students did very well. At the recital Ethan performed for the first time, he did great, I was such a proud pop! We were also honored by the Dance studio with a gift that they had for us, It was very touching. Something we are forever grateful for.

After the visit with the Doctors on Monday, before I went back to work, I was able to take Amy on a lunch date. It was so good to get out just the two of us. Today we had a little BBQ in the back yard with the boys, just the 4 of us. These are memories we won't soon forget.

The outpouring of love and support from everyone has been unbelievable. We got a Stairway full of yellow flowers one morning, email and facebook comments have been pouring in, and a longtime great friend of mine Amber, has organized a benefit on my behalf.

Honestly with all the support we have received, I am at a loss for words.

All I can say is Thank you all so much!

Final Details

Monday Morning the 24th we headed up towards the Huntsman to visit with the Radiation Oncologist, and my surgeon, so we could find out the details of what would take place this coming week. At the first appointment we spoke with the team in charge of recommending what will happen in regards to Radiation treatments. Interestingly enough they hadn't gotten the info from the surgeon about my upcoming operation. They were under the impression that we would be starting Radiation treatments by the end of the week. Just a little communication gap. Once we had gotten everything sorted out they informed us that we would still do radiation after the surgery. We are not sure right now as to what kind of radiation they will do, whether a targeted pin point radiation or a more broad area treatment.

If we do the area treatment they will require that I go in every week day, Monday through Friday for about 4-5 weeks. The radiation will only be administered for about 1-5 mins. and then I would go home, Total time at the hospital for radiation would be about 30 mins each day. In preparation for the radiation they will do a series of CT scans to get all the measurements and do all the planning. A mold of my back will be created, an impression of sorts ,so when I lay down on it I will be in the same exact position every time, so as to not "fry" anything they weren't planning on frying. I would be getting 3 small tattoos probably the size of freckles, one on each side of my rib cage and one on my sternum as reference points for the lasers to align themselves on my body. Proper alignment is crucial so they don't damage anything they are not targeting. Side effects include fatigue, irritated throat, and irritated skin. Other than that I should be able to carry out my life as normal, Much different that the chemo I had the first time around where I was literally in bed for 2-3 days after each round, the exhaustion was incredible, and the side effects much worse. If this is the route we go with it sounds like it will be a... can I say, better experience, than the chemo.

As far as the surgery goes, we spoke to the surgeon and were told that after consulting with their team of doctors, they decided that we would just go in through the back, and not the front too. I was relieved!! They felt very confident that they could get the job done that way. He mentioned that the procedure would still be very risky because this time they would try to remove everything they could find in there, Including the remaining parts of the first tumor that they thought to be too risky to remove the first time. The risk will come with the fact that they will be digging around scar tissue and peeling tumor off from my Aorta which is up against my spine. This is also where they thought the tumor originated from, before it moved into T2 and T3. Leiomyosarcoma is a soft muscle tissue cancer. It usually infects muscle tissue that we can't control, such as organs and involuntary muscles. Mine was believed to have started in my Aorta and then metastasized into the spine. An extremely rare circumstance.

They will remove the rods I have in place and then cut out the cages in the T2 location. They will then cut out T3 and probably put 2 more screws into T6, one vertebrae lower that the bottom of my current fusion to add a little more stability. A larger spacer or cage will be placed to span the T2 and T3 locations, and longer rods will be attached to the new and existing screws. The amazing thing is that they don't plan on putting me into a cervical thoracic brace. With my existing screws already being well established in my back they should provide enough support. Pretty crazy when you think about it. They will just unbolt me and do their thing then bolt me back together! Now that is my kind of work!! I guess you can never have enough hardware. I always tend to come home from the local hardware store with a little extra then what I had planned. I guess it applies here too! ;)

We were also told that the tissue healing would take longer this time because it always does the second time you go digging in the same location. I am just elated to not have to use the neck brace, it was such a pain in the...well, neck! (heavy sarcasm there) Things will go well and with the help of the Lord I will heal quickly. I have received many blessings that have given me comfort and whatever the outcome of this will be, we are at peace.

Friday, May 21, 2010

Painful Reminders

The whole idea that I have another tumor growing in my spine hasn't really hit home yet. What I mean by that is, I haven't really noticed any extra pain, that is until just the last few days. I remember back to the first time that all of this happened. I had discomfort in my back first, then it moved to actual pain, after which it started to cause numbing sensations in the lower extremities of my body. By that Time the pain was unbearable. I think that with this tumor being in the "newer" stages of growth the pain won't get nearly as bad as the first time, before the Surgeons remove it. The thing I have on my side right now is that after the first surgery most of my upper back was completely numb. To this day, most of it is still numb. Some sensations have grown back over time, but I mostly feel pressure if touched on my back. With all the surface nerves that they cut through as well as the T2 nerve roots that were cut, I really don't feel much back there at all. If you cant feel it then it doesn't hurt right!? Well for the most part at least.

For the last few days I have noticed that numbing sensation around my mid section, or "Love handles" (yeah I do have them). The numbing is slight but noticeable. I have also noticed that I tend to get what feels like muscle cramps that don't go away, in my mid back. I wake up in the morning and feel OK, that makes sense, I have been laying down all night. The pressure from standing all day has been relieved during a nights sleep. At work things are great up until about noon, I then start to feel that cramping feeling. I guess the day is already catching up to me. If you think about it I have the weight of two arms and a large head bearing down onto that part of my spine. I then try to ignore it as best I can. By the time I get home it has already been bothering me for a while, I sadly tend to be a little more "short" with those I love most.

The best way I can describe it is something like this; Someone tapping you on the shoulder, at first you shrug it off, the tapping doesn't stop, they keep tapping you incessantly and you try to ignore it. Well by this time no matter where you go or what you do that person is right behind you tapping you on the shoulder. The tapping is in the same spot, so you are getting sore, annoyed, and frustrated. It just won't stop. Sooner or later you just can't ignore it any more and you snap. Too many times have my patience run out at the end of the day, when I get home and my little boys just want me to play with them. Instead there have been times where I have found myself brushing them off, trying to find some relief to the relentlessness of the "tapping on my shoulder". I get a little teary eyed just thinking about it. I hate to be that way.

These are the painful reminders of the first time we went through this and the reminder that I still have a bit to go through again. The pain isn't too intense. I can honestly say that it doesn't hurt too bad. However, it's the slight pain that goes on for a long time that wears you down. This is no excuse for being short with my boys or wife. When I am not feeling any discomfort I try to spend good quality time playing with the boys, and I love my time with them. I just need to find it deep down within to push the nagging aches to the back of my mind and not let it get to me. Hopefully that way I can spare my family of my childish moodiness, and lack of patience when I just can't take it any more.

With the Date of my operation moving closer and closer, I have to look for the positive things. I will be able to be home to spend more time with my Little Family. The constant aches and nagging twinges hopefully will be a thing of the past, albeit replaced by major aches and pains but hopefully they will be a more temporary ordeal. I will probably get to watch lots of M*A*S*H reruns too! (yeah I'm am a huge fan) Also the hope that this will be the final chapter of my surgery saga!

Wednesday, May 19, 2010

Family and Friends

Sunday was a day of incredible support. I was asked by my parents if we were going to go over for Sunday dinner. Thinking nothing of it I said we would be there. The morning went well as we attended Church. The boys did alright although they got very restless and started to show us how tired they really were. I am sure anyone with kids knows exactly what I mean. I feel like I got the peace and rejuvenation I so badly needed after a very emotional week.

We were on our way to Mom and Dad's house and as we rounded the corner onto their street, I realized this wasn't going to be just our regular Sunday dinner. The street was lined with cars, and there were people standing out in the yard. Hanging over the Garage door was a big yellow sign with words of encouragement, there was even chalk writing in the street. I felt overwhelmed and before I got out of the car while in the driveway, the tears began to flow. I knew that the same support system I had the first time around was going to be there for me the second time.

My Brother had organized the whole thing, and had gotten help from my Sisters, Family and Friends. It was such a surprise to me it completely took me off guard. We had tons of food and everyone had brought their own meat to grill. It was so much fun. It really helped me get my mind off of things. I enjoyed seeing everyone who took the time to come out and show their support. It really meant a lot to me. Knowing that everyone there had organized a group fast on our behalf and that they had been praying for us really got the emotions flowing. I am very great full for the people I have surrounding me.

Saturday, May 15, 2010

The date has been set

We decided that we needed to get as much done around the house and yard before I would be down and out for 6-8 weeks. We headed to the hardware store and picked up a few odds and ends so we could plant our garden. With the little amount of space we have, we've been doing the square foot gardening thing in some boxes we put together a little while back. Made from just some weed barrier cloth tacked to the inside of 2x4 boxes placed on the patio, it makes it very easy to use. We have great drainage for the boxes because excess water just flows out through the cloth and we don't lose any soil. The only problem we were running into was that we thought the boxes could be just a little bit deeper. So we decided to have a family "fix the garden night". We used some more store bought soil and 2x4's added the extra row and filled them up. We had plenty of good help from the boys

As we were finishing up the phone rang and the RN for my Neurosurgeon was on the other end. She said that they had time to discuss my situation with other Doctors and surgeons and that they wanted me to come in on the 17th for some info about what will happen.

A day later we got another call from the RN. We were told that My surgeon had an emergency surgery scheduled on the 17th and that we would have to come it on the 24th. She told us that my surgery had been scheduled for the 27th of this month.

Well at least we have a schedule. I think knowing is better than the anticipation. Now we can squeeze as much into our last week and a half as we can.

Now that we have a date, I was able to get in touch with Human Resources at my new job. We discussed what was going to happen and all I can say is I am so blessed to be working with such an amazing company. Their willingness and understanding has blown me away. I have been there now for a few months and yet they treat me as one of their own, as if I had been there ten years. All I can say is thanks.

I have been given such a wonderful gift, the gift of Friends and Family. Already the outpouring of love and concern from everyone I know and even people I don't know has been overwhelming. I have been filled with gratitude.

Just the other morning I was reading out of the Book of Mormon, I turned a page and a scripture I had previously underlined and for some reason even put a star next to, brought me much comfort. It is in Alma chapter 36 verse 3, on page 298. I'll let you have the experience of reading it yourselves. It helped me again realize that all will be well.

I thank my Father in Heaven every day for the gift of life and I pray for the strength to not squander it.

Wednesday, May 12, 2010

I knew it was to good to be over.

I feel like I need to start a blog, a way to get out what I feel. No fancy title, no real purpose other than for me to record the things that have been happening in my life. I also want something to look back on, something I can reference, a journal if you will. I really don't know where to start. I just know I need to start writing. What I need to say will come to me.

A year ago in Feb. I was diagnosed with cancer, Leiomyosarcoma. I underwent a surgery that removed 2 discs and a vertebrae. I had 8 screws, two cages and 2 rods implanted. I underwent neuro-rehab and 18 weeks of chemotherapy.

It was an experience to forget, or was it? My wife Amy, kept a blog on the events of the following months. She commented on the joys and the pains, the recovery and the heartache. I got to read about what happened to me from the eyes of my wife. All of this can be found on our family blog site. Feel free to browse the months following Feb 09' up through the current date.

Well after all of the experiences we have had, we have more on the horizon. This morning was a routine 3 month checkup. I go in every 3 months for scans and tests to follow up on the cancer, just to make sure it doesn't spread.

I was feeling nervous just like I had for the previous follow-up visits. I new I was going to be fine. Getting ready for the day, I had the usual butterflies, the anxiety and the desire to get it over with. When we got to the Hunstman Cancer institute, we got the boys out of the car and headed in to the clinic. Sitting in the chair waiting for the Team of oncologists to come in and tell me that everything was alright, I had a different feeling, a fleeting thought of hold on to your hat! One of the Docs. opened the door and came in asking us how we were doing. We were fine, at least for now I thought we were fine. She asked me if I was feeling anything different. I said I was fine other than a slight twinge in my back, which I was told, visits in the past, was probably my body still adjusting to the drastic changes that had been made.

Well it turns out that the slight twinge was nothing more than the tumor making its new home in my T3 vertebrae. One vertebrae below the original tumor. With the News that the cancer had spread to another vertebrae and the thought of having to go through with everything all over again, I cried. I knew that what ever was going to happen, the Lord was going to be there to lift and strengthen us, like he did the first time. I still cried. I wanted so bad to hear good news, I wanted to be one of the success stories of having beaten cancer on the first try. Looks like I didn't get it right the first time.

The options we have are 3. Spot Radiation treatment, Minor surgery or Major surgery. The Radiation therapy as was described to me will basically cook the area and turn it into a "well done steak" Hopefully killing all the cancer in the process. Surgery is looking more and more like it will need to happen again. The tumor has already started to weaken the bone and make it soft. If we kill the tumor off with radiation, the bone is still deteriorated. The damage is already done. The Neurosurgeon said that we will likely go in and open me back up in the same place as before as well as though the front, under my arm between the ribs, weaving around the lungs and heart to get to the front side of the spine. We were told that this would be a much more risky surgery. However doing it this way would give us the chance to take out as much as possible, in terms of the infected tissue and bone surrounding the area. They would also add more titanium hardware to the front of my spine, seeing as how I would be missing now 2 vertebrae.

This all sounded so exciting!!! (can you hear my sarcasm?)

The thoughts I have running through my head are so many that it is hard to fish through them and think about what I want to say.

The one thing I learned from the first experience was that ATTITUDE IS EVERYTHING! It will make or break you. Do I get depressed and sulk? Sure. Do I feel like if I go through this again, it will kill me? Yes. Do I feel like my little Family can take more of this? No..... But we will make it through. We have to be positive. We will have hard times, we will have pain, we will have exhausting days. Despite all that will be thrown at us, our Father in Heaven has promised us that he will be there to strengthen us and lift us up. During the first time I was in the hospital, I saw miracles every day, I saw the hand of God in all things. He was there to comfort me, to help me realize that the pain and hurt would be temporary, that all would be well.

The recovery I experienced after my last surgery was remarkable. I was able to get back to doing just about everything I had done before. My family can attest to the fact that I have been a recipient of many miracles. I will forever be great full to my Father in Heaven for such experiences. For the quiet moments of peace, for the added courage I didn't have, for the speedy recovery, for the company of the spirit on sleepless lonely nights, and for the thousands of answered prayers offered on my behalf.

I will forever be great full to My family, who spent hours and hours by my side through the worst parts of this ordeal. They spent time helping my little family. Making sure that we were alright. I love them and appreciate all they have done for me. More than anything I am great full for my loving Wife Amy. She has been a rock. She has had courage and fortitude beyond what I could ever hope for. She traveled up to be with me multiple times a day, she put more miles on her car than I could imagine. Most importantly, she always had something good to say. If I was feeling down she would boost me up, encourage me and show me that "for better or for worse" love. I Love you Babe!

I guess I am recalling all of these memories more for myself to help me remember that as scared as I am to go though it again, I know the same help will be there and God will again be by my side.