There are a few random things I have been thinking about a lot lately, I guess because of interactions I've had with people recently. I just think these things are kind of funny.
1. Don't you love how people with a poor dating history who get lucky and get married suddenly become "experts" on dating/marriage, and then decide to give everybody dating/marriage advice?! It is highly irritating. The people who have done this to me have always done it in a very condescending way too. They are like, "here, let me show you how to be less of a loser." I personally think that if you have been married for less than 10 years, you should never try to give marriage advice. And even then, you should rarely give dating advice.
2. When I was a teenager, people would call other people "posers" a lot. The people I would skateboard with would call those who dress like a skater, but have no skating skills, a poser. I was thinking - there are a lot of people I would call posers in regards to being a good person. These are the people who advertise themselves very noticeably to everyone else. I think of them as modern day Pharisees and Sadducees. They are everywhere in Provo. They do things like talk about how good they are, and then screw people over with their "business" that is very shady. Or they drive like a maniac and almost run you off the road, and then pull into the temple. Posers.
3. I was thinking about the economy. A lot of people have said, "I wish it was the late '90's again when everybody was rich." How quickly people forget how much they were living past their means in the '90's, which lead to the problems we are facing today. When I was in high school, the average family debt was somewhere around $50,000. When I started college, the average individual student debt was around $10,000, not counting student loans - just personal debt. That means for every person like me who had zero debt, there was someone else with twice the average. And people wonder why we are in such a mess now. Add to that the fact that this is the first time in history where we have four generations in the work force. Older people did such a crappy job of saving money that they have to keep working now. This doesn't help the younger generation any because now there are fewer jobs available. The sad part is, it is mostly the Baby-Boomer and X generations that caused the problems, but the people of Generation Y are feeling the consequences the most. In most states, the average unemployment is still around 10%, but it is close to 25% for people in the 18-30 demographic. And yet, older people still feel the need to lecture our generation about working and saving money. It is kind of a "do as I say, not as I do" situation.
4. Have you noticed how being "indie" is the popular thing? Isn't this a major contradiction? "I am so independent, I do everything that is popular." First of all, the term "indie" at one point referred to bands that released music independent of a major label. Now, most "indie" bands are on a major label. "Indie" also refers to a style, usually marked by lack of hygiene, wearing tight pants, v-neck shirts, beanies, and listening to awful music. If you want to see what "indie" is, go to Velour in Provo on any given night. Everybody looks the same, and all of the bands sound the same. The bands don't even use distinct choruses or melodies in their songs - I guess because they are too cool for music theory.
5. I don't understand party loyalty in politics. Both major parties have become very corrupt, and people within a party don't even hold the same stance on issues as other people in the same party. The two parties basically get people to fight over smaller issues, which distracts everybody from seeing how badly politicians are screwing over the country.
All of these random thoughts have kind of got me thinking, where are we going and why are we in this hand basket?
Saturday, March 24, 2012
Monday, February 27, 2012
Bucket List
So, I was kind of forced into going to a counselor after all of this cancer business. I feel like I have been handling everything pretty well, but some people thought a few sessions of counseling would help. So I went. During my last session, my counselor talked about "ambiguous loss" where people grieve over things that are uncertain (such as a kidnapped person or a soldier M.I.A.). He said my situation could fit into that category because my future is pretty ambiguous right now. All I know is that I have a ton of polyps throughout my entire digestive tract, but I don't know if the drugs I am currently taking will stop their growth, or if things could get out of control quickly. I don't know, and the doctors don't really know a lot just yet.
Even though my type of cancer is pretty treatable and I don't expect to die anytime soon, my counselor suggested making a "bucket list" just to give me some things to think about and goals to work toward. I immediately thought of the episode of "Everybody Loves Raymond" where Ray makes a bucket list that consists of eating things he has never eaten before, and then the goal to "never throw up again." I have been thinking about things, and here is what I have come up with so far:
1. Get married and have a family. I know this sounds cliché, but that honestly is my biggest goal right now. Like I said, I am not expecting to die anytime soon, so there is no health-related reason for this to not happen. I still go on dates quite often, too, I just haven't found the right girl yet. So the main goal on my list is also the hardest to achieve.
2. Advance in my career(s). I do a lot of different things for work, and I haven't exactly narrowed anything down to a career, but I could see myself being successful in a lot of different areas. I have had success with making films/commercials/videos. I have done okay with photography. I have tried a few different teaching jobs. I write and record music. The problem is, I don't know which would be best for the long term. Maybe I could continue to dabble in all of them, but make everything more consistently profitable.
3. Make a feature-length film. I have started several feature-length films, but most came to an end after issues with the lack of budget, equipment, actors, crew, etc. It is something I am very passionate about, but it is hard to make a good final product when everyone else involved is not so passionate. It is also quite expensive, and unless I found a willing producer, I would have to cover all of the costs myself.
4. Go to New Zealand, Switzerland, Ireland, Italy, and Denmark. Ever since I was a young boy, I have wanted to go to New Zealand. It just seems like such a beautiful place. The other countries on my list are places where my family is from (beautiful places too).
5. Open a concert for one of my favorite bands. This may seem far-fetched, but my band has what it takes to do it if we would all work really hard. We haven't had the whole band together for a few years, though. We have been able to hang out with a number of great bands and just chat - the Gin Blossoms, the Bouncing Souls, Ignite, the Street Dogs, Jimmy Eat World, Coheed & Cambria - but we have never played with them. I gave demo CD's to those bands too, but they don't have any say when it comes to getting signed by a label or picking who opens for them. I have played shows with semi-famous bands like the Neon Trees, but they aren't an influence on me like the other bands I mentioned.
Ok, so those were all goals that would take a ton of work and time, so I thought of some that would be easy to check off this spring/summer:
- get Endowed in my church (my last bishop said I had to wait until I was getting married, but now I am allowed to do it after the next series of Temple Prep classes)
- record a new album (I have several new songs that need to be recorded)
- go skydiving
- hike Mt. Timpanogos all the way (I've done most of it several times)
- backpack/hike in Zion National Park
- fish the Feather River with my grandpa and brothers (we do this almost every year, but we missed the last few because of my grandpa's health)
- visit Yosemite (I have lived only a couple hours away for most of my life, but I have never been)
- wrestle a bear (only slightly joking)
That's what I've come up with for now. I guess we'll see if I accomplish any of those goals soon.
Even though my type of cancer is pretty treatable and I don't expect to die anytime soon, my counselor suggested making a "bucket list" just to give me some things to think about and goals to work toward. I immediately thought of the episode of "Everybody Loves Raymond" where Ray makes a bucket list that consists of eating things he has never eaten before, and then the goal to "never throw up again." I have been thinking about things, and here is what I have come up with so far:
1. Get married and have a family. I know this sounds cliché, but that honestly is my biggest goal right now. Like I said, I am not expecting to die anytime soon, so there is no health-related reason for this to not happen. I still go on dates quite often, too, I just haven't found the right girl yet. So the main goal on my list is also the hardest to achieve.
2. Advance in my career(s). I do a lot of different things for work, and I haven't exactly narrowed anything down to a career, but I could see myself being successful in a lot of different areas. I have had success with making films/commercials/videos. I have done okay with photography. I have tried a few different teaching jobs. I write and record music. The problem is, I don't know which would be best for the long term. Maybe I could continue to dabble in all of them, but make everything more consistently profitable.
3. Make a feature-length film. I have started several feature-length films, but most came to an end after issues with the lack of budget, equipment, actors, crew, etc. It is something I am very passionate about, but it is hard to make a good final product when everyone else involved is not so passionate. It is also quite expensive, and unless I found a willing producer, I would have to cover all of the costs myself.
4. Go to New Zealand, Switzerland, Ireland, Italy, and Denmark. Ever since I was a young boy, I have wanted to go to New Zealand. It just seems like such a beautiful place. The other countries on my list are places where my family is from (beautiful places too).
5. Open a concert for one of my favorite bands. This may seem far-fetched, but my band has what it takes to do it if we would all work really hard. We haven't had the whole band together for a few years, though. We have been able to hang out with a number of great bands and just chat - the Gin Blossoms, the Bouncing Souls, Ignite, the Street Dogs, Jimmy Eat World, Coheed & Cambria - but we have never played with them. I gave demo CD's to those bands too, but they don't have any say when it comes to getting signed by a label or picking who opens for them. I have played shows with semi-famous bands like the Neon Trees, but they aren't an influence on me like the other bands I mentioned.
Ok, so those were all goals that would take a ton of work and time, so I thought of some that would be easy to check off this spring/summer:
- get Endowed in my church (my last bishop said I had to wait until I was getting married, but now I am allowed to do it after the next series of Temple Prep classes)
- record a new album (I have several new songs that need to be recorded)
- go skydiving
- hike Mt. Timpanogos all the way (I've done most of it several times)
- backpack/hike in Zion National Park
- fish the Feather River with my grandpa and brothers (we do this almost every year, but we missed the last few because of my grandpa's health)
- visit Yosemite (I have lived only a couple hours away for most of my life, but I have never been)
- wrestle a bear (only slightly joking)
That's what I've come up with for now. I guess we'll see if I accomplish any of those goals soon.
Wednesday, February 15, 2012
Friends
I got a lot of feedback from my last post from people thinking I was talking about girls they know and people getting slightly offended. The main girl I was thinking about when I was writing that last post, though, doesn't know any of my current friends and doesn't have a facebook account, so she would not have seen it. She broke things off with me just before Valentine's, so I was dealing with some hard memories. So for everybody who thought I was venting about someone they know, that wasn't the case.
Anyway, I wanted to write about something more positive - my friends. I have the best friends in the world. Seriously, I don't know what I did to deserve such good friends, but you all are amazing. Everybody has been so good to me since I have been dealing with health issues, but everybody was really good to me before that too. I have to admit, after the experiences I had from the last two areas in Provo where I lived, I was ready to pack up and move away. I had terrible neighbors, and the people in my wards were very judgemental and unfriendly. A member of the bishopric in one of my previous wards actually tried to get my brothers and I evicted because he said we were running a business from our home without proper licensing.
So I found a place up Provo Canyon, hoping that I wouldn't have to deal with people as much. I was mostly inactive in my ward for the first year that I lived here. But then, people started doing nice things for me for no reason. I started going to some of the activities and getting to know people. Soon I realized that I was missing out, became active again, and made a whole bunch of friends. Everybody accepted me for who I was without judging me. I don't know what it is about my current ward and stake, but everybody is great. There are probably some cliques, but I haven't noticed any yet. Everyone I know is a great example to me. I think everyone in my ward and stake realizes that we are all going through hard things at the same time, and we are much better off helping each other and being friendly than being self-centered and not caring about others. So I just wanted to say thank you to everyone for being such great friends and examples.
Anyway, I wanted to write about something more positive - my friends. I have the best friends in the world. Seriously, I don't know what I did to deserve such good friends, but you all are amazing. Everybody has been so good to me since I have been dealing with health issues, but everybody was really good to me before that too. I have to admit, after the experiences I had from the last two areas in Provo where I lived, I was ready to pack up and move away. I had terrible neighbors, and the people in my wards were very judgemental and unfriendly. A member of the bishopric in one of my previous wards actually tried to get my brothers and I evicted because he said we were running a business from our home without proper licensing.
So I found a place up Provo Canyon, hoping that I wouldn't have to deal with people as much. I was mostly inactive in my ward for the first year that I lived here. But then, people started doing nice things for me for no reason. I started going to some of the activities and getting to know people. Soon I realized that I was missing out, became active again, and made a whole bunch of friends. Everybody accepted me for who I was without judging me. I don't know what it is about my current ward and stake, but everybody is great. There are probably some cliques, but I haven't noticed any yet. Everyone I know is a great example to me. I think everyone in my ward and stake realizes that we are all going through hard things at the same time, and we are much better off helping each other and being friendly than being self-centered and not caring about others. So I just wanted to say thank you to everyone for being such great friends and examples.
Friday, February 3, 2012
Insomnia and Dyslexia
I am writing this at almost 5 AM. Why am I awake right now? Because I have insomnia and I don't know what else to do with the time. Insomnia and dyslexia are two things people always say they have when they can't sleep for one night or write/say something mixed up once. As a person who actually has medically diagnosed insomnia and dyslexia, it kind of bothers me when people use those terms to describe a one-time thing. I have been struggling with insomnia and dyslexia since I was an infant, and it can be quite frustrating.
When I was about 3 years old, my mother started teaching me how to read and write. She wanted me to be able to read and write before starting kindergarten, so she was always working with me. She noticed a strange pattern developing. I would start with the last letter of the last word, and starting from right to left, I would write every letter of every word backward until I got to the first letter of the first word. I was just a toddler, but I think I remember her saying, "What the hell?" Just kidding. But it was definitely strange. She kept working with me, but I kept doing the backwards thing for over a year. Then she came up with a technique where she would "write" the letters on my back so I could feel how it was supposed to be. That really helped, and soon I was reading and writing like a regular person. That's not to say that I was "cured" though.
To this day, I still find myself reverting to the backwards thing with reading and writing on occasion, especially when I get really tired. When it comes to reading, there are certain words that I always mix up. A very common mix up is "was" vs. "saw". I'll read a sentence and be confused about whether the character saw a pig, or if he was a pig. Comical, yes, but also frustrating. My composite score on the ACT was dropped significantly because I couldn't finish the Reading section. My scores in the other sections were all 31-33, but my Reading score was a 25. Like I mentioned, my dyslexia gets worse when I am tired, and I had insomnia problems the night before taking the ACT. The problems persisted through college too. Luckily, spell checkers can usually catch mix ups when I type, or else I would have been in trouble writing all of my papers late at night during college. The checkers don't catch things like "was" and "saw", though, so I would just explain away the mix up to my professors as a deeper metaphorical thing. They thought I was a genius. "Wow, you are saying the character in 'The Rime of the Ancient Mariner' WAS an albatross?" Genius.
Insomnia can be really frustrating too. If you have ever seen the movie "Fight Club", you know what insomnia can lead to. While I have never developed an alternate persona or blown up buildings, I am very familiar with the feeling Tyler Durden describes as never being fully awake or asleep. I often have this feeling like there is a fog in my brain, and while I am fully aware of what is going on, I feel detached from my body like I am an outside observer. My brother, Ben, has problems with insomnia too, and it is kind of funny living together. We often get up in the middle of the night and watch a movie or play video games. I have seen doctors many times trying to get help, but nothing has worked so far. I have tried going for walks, taking relaxing showers, counting backwards from 100, using muscle relaxation techniques, drugs, you name it. One thing that always helped me sleep in high school was reading "The Awakening." Every time I would start to read that damn book, I would be out in no time. I think my body knew I love irony, so it worked. Some of the drugs have helped me fall asleep, but then I can't get up when I need to. So I have just learned to live with it. I often do my video editing projects late at night because I am in a different mind set and I come up with more creative ways of doing things. I also work on writing scripts and writing songs late at night. My creativity seems to be stronger when I am tired for some reason. Of course, I always have to check what I have done the next day after I have slept to make sure it isn't completely crazy, but it usually works out. Brains are interesting things, aren't they? Anyway, this might all be incoherent rambling, so maybe I will try going back to sleep.
When I was about 3 years old, my mother started teaching me how to read and write. She wanted me to be able to read and write before starting kindergarten, so she was always working with me. She noticed a strange pattern developing. I would start with the last letter of the last word, and starting from right to left, I would write every letter of every word backward until I got to the first letter of the first word. I was just a toddler, but I think I remember her saying, "What the hell?" Just kidding. But it was definitely strange. She kept working with me, but I kept doing the backwards thing for over a year. Then she came up with a technique where she would "write" the letters on my back so I could feel how it was supposed to be. That really helped, and soon I was reading and writing like a regular person. That's not to say that I was "cured" though.
To this day, I still find myself reverting to the backwards thing with reading and writing on occasion, especially when I get really tired. When it comes to reading, there are certain words that I always mix up. A very common mix up is "was" vs. "saw". I'll read a sentence and be confused about whether the character saw a pig, or if he was a pig. Comical, yes, but also frustrating. My composite score on the ACT was dropped significantly because I couldn't finish the Reading section. My scores in the other sections were all 31-33, but my Reading score was a 25. Like I mentioned, my dyslexia gets worse when I am tired, and I had insomnia problems the night before taking the ACT. The problems persisted through college too. Luckily, spell checkers can usually catch mix ups when I type, or else I would have been in trouble writing all of my papers late at night during college. The checkers don't catch things like "was" and "saw", though, so I would just explain away the mix up to my professors as a deeper metaphorical thing. They thought I was a genius. "Wow, you are saying the character in 'The Rime of the Ancient Mariner' WAS an albatross?" Genius.
Insomnia can be really frustrating too. If you have ever seen the movie "Fight Club", you know what insomnia can lead to. While I have never developed an alternate persona or blown up buildings, I am very familiar with the feeling Tyler Durden describes as never being fully awake or asleep. I often have this feeling like there is a fog in my brain, and while I am fully aware of what is going on, I feel detached from my body like I am an outside observer. My brother, Ben, has problems with insomnia too, and it is kind of funny living together. We often get up in the middle of the night and watch a movie or play video games. I have seen doctors many times trying to get help, but nothing has worked so far. I have tried going for walks, taking relaxing showers, counting backwards from 100, using muscle relaxation techniques, drugs, you name it. One thing that always helped me sleep in high school was reading "The Awakening." Every time I would start to read that damn book, I would be out in no time. I think my body knew I love irony, so it worked. Some of the drugs have helped me fall asleep, but then I can't get up when I need to. So I have just learned to live with it. I often do my video editing projects late at night because I am in a different mind set and I come up with more creative ways of doing things. I also work on writing scripts and writing songs late at night. My creativity seems to be stronger when I am tired for some reason. Of course, I always have to check what I have done the next day after I have slept to make sure it isn't completely crazy, but it usually works out. Brains are interesting things, aren't they? Anyway, this might all be incoherent rambling, so maybe I will try going back to sleep.
Sunday, January 22, 2012
Washoe Fire
On Thursday, I was at home trying to recover from being sick all week. I had a 103 degree temperature, and I had not been able to keep any food or liquid down. I was sleeping into the afternoon when I was awoken by a call from my mom. I have a specific ringtone for when she calls, so I answered it expecting it to be something about making sure I get enough sleep to get better. Instead, she was crying and freaking out. She was saying, "There was a fire...I didn't have time...I didn't get the cats out..." I tried to calm her down and tried to get all of the facts so I would know what to do. She told me she was about to get in the shower when the neighbor started banging on the door yelling, "Get the hell out of there!" over and over. She ran outside and could barely see anything through the smoke. She saw one neighbor's house on fire, then another neighbor's barn almost completely burned down, and then saw flames coming from the back of her house. She ran back in to try to save her cats, but a fireman grabbed her and told her the smoke would kill her. She was forced to drive away, not knowing what would happen.
I tried to console her, and told her she did what she had to. She lives alone, so the cats are all she has to come home to at nights. I felt bad, but I said that the cats weren't important, and that I would not ever want her risking her life for some cats. I told her that if the house burned, it would still be alright - it is just a house; just stuff that can be replaced. In the back of my mind, though, I was thinking of all the precious things like photos, paintings, videos, and other things of sentimental value that would not be replaceable.
After I finished talking with her, I tried to call around to the fire and police stations in Reno and Carson City that might have information. After a few transfers, I talked to somebody who knew the neighborhood. He told me that my mom's house had burned down. I started trying to figure out a way to get out to Washoe Valley to help with clean up, and just to be there with my mom. It was the worst feeling in the world to be 600 miles away, very sick, and thus not in any shape to drive, and having no way to help. Amazingly, some very good friends were incredibly generous, and helped me pay for an expensive, last-minute plane ticket.
As I was packing, I got a call from my mom saying that a neighbor thought he saw her house still standing. He said it looked like only the back wall had caught fire, and that the firefighters had stopped the fire from spreading to the rest of the house. I was happy to hear this news, but I was also still preparing for the worst in case it wasn't true.
By the time I got to Reno, thousands of people had been evacuated and 20+ houses had burned down. From the plane, I could see massive clouds of smoke, large black areas where fields had burned, and fires still burning on the hill. My mom picked me up from the airport, and her car absolutely wreaked of smoke. The fire was only 50% contained, but snow was on the way and crews were working around the clock. Highway 395 was closed, so there was no way to get close to our house to see anything. So we waited.
At about 10 PM Friday night, Highway 395 was re-opened. However, the police were not letting anybody into the residential neighborhoods of Washoe Valley yet. At 8 AM Saturday morning, the fire was finally 100% contained and residents were being allowed to return to their neighborhoods. We immediately drove down, hoping for the best, but preparing for the worst. Miraculously, our house was still standing. The neighbor's house 25 feet away was completely destroyed. The back wall of our house had been partially cut away with a saw to separate the burning part from the house, but the wall was still structurally sound. It was the wall that housed the breaker box, so a lot of the wiring was burned, but it was not nearly as bad as we thought. The inside didn't look very damaged, and the cats were still alive. The smoke was still so strong that I couldn't breathe very well and my eyes stung, so we didn't stay inside long. My mom took the cats and went back to my aunt's house where she is staying for now. We will obviously need to wash down everything inside, and possibly replace sheets, curtains, clothes, and other things damaged by the smoke, but that is no big deal. The wiring for the house will need to be fixed, and the back wall will need to be repaired, but overall it was not very bad.
I was very saddened to find out that the elderly lady living next door had died from smoke inhalation. There was an older couple living there, and her mother had a studio attached to the house. She was 93, and was home alone at the time of the fire. I don't know if she even knew about the fire, or if she died in her sleep. In all, the Washoe fire burned 29 homes, and caused millions of dollars in damage. It is a rural area outside Reno, so several animals died and farm lands were destroyed. An elderly man turned himself in as the one who started the fire. He disposed of fireplace ashes improperly and it got out of control with the high winds. It is all very sad, especially coming just 2 months after another fire close by that destroyed many homes. I am amazed and grateful, though, that my mom was not injured at all and that her house was not nearly as damaged as we thought. I think she had angels watching over her. I thank God for the many miracles that happened, and for the heroic firefighters who saved many people.
Saturday, January 14, 2012
My Life As Of Late
This is my third attempt at starting a blog. I am not doing anything new here, I just thought it would be a good idea to write down some of my thoughts and experiences to share with others. I am sure my mom will read everything I write, but maybe a few of my friends will too, and maybe somebody will get something from reading my experiences. I also view this as a cathartic outlet where I can get things off my chest. If nothing else, many of my stories can serve as a good example of what not to do. Anyway...
The week after Thanksgiving 2011, I was scheduled to go into the Huntsman Cancer Institute for a checkup and to discuss the possibility of being on a new study. My family has a history of what is called Familial Adenomatous Polyposis (FAP), which is a genetic mutation that causes pre-cancerous polyps to grow in the intestines - mostly in the colon. Huntsman has been studying my family for many years, and my mom and grandma both had their colons removed in the early '90's. When I turned 18, I was registered as part of the genetic study at Huntsman. A simple DNA test showed that I had the gene mutation, and therefore was susceptible to colon cancer. I had already had two colonscopies prior to this last visit, and they didn't really find anything to be concerned about. My last one was in 2007, and they said because they didn't find anything, I wouldn't need another checkup for 4 to 5 years.
The purpose of my visit after Thanksgiving was to see if I could qualify to test a new set of drugs that had already shown promise in stopping cancer cell growth in lung cancer patients. To qualify, I would need to have a certain number of polyps above a certain size that they could study. They performed a colonoscopy and an esophagogastroduodenoscopy, and the results kind of caught everybody by surprise. I had hundreds of polyps throughout my entire digestive system - in my esophagus, stomach, duodenum, and colon. They cut out the polyps that fit into the most dangerous classification, but left in all of the rest to study. They mapped out my entire digestive tract very precisely so they would have a baseline to which they could compare future scope results. The whole procedure was pretty amazing to me. For those of you who don't know, Huntsman has the best doctors and best equipment in the world - and I only live 45 minutes away. That's pretty cool, if you ask me.
Needless to say, I qualified for the study. They immediately started me on the new drugs and gave me a packet of papers telling me everything I needed to know and do. To be honest, the list of side-effects was pretty scary to look at, but I figured it was better than the alternative. It took about two weeks for the first real signs of the side-effects to show. I developed a rash that looked like acne all over my head, face, neck, chest, and back. It hurt pretty bad, and it was really embarrassing going out into public looking like I did. Everything itched to the point of almost driving me insane. When I would shower, it would rip everything open and I would be bleeding all over. I couldn't sleep at night because every movement would hurt. It sucked. Luckily, the next time I went up to Huntsman they gave me a clindamycin cream, and later a hydrocortisone cream. Those two creams are the best thing ever. They are working very well, and the rash is quickly disappearing.
Other major side-effects I am currently experiencing include fatigue (like completely exhausted all the time fatigue), shortness of breath, a constant sore throat, loss of appetite (maybe a good thing), and some hair loss. All in all, though, it is tolerable. I have "safety labs" at the end of every month to make sure nothing is abnormal, but I won't really know how effective the drugs are until they do the colonoscopy and esophagogastroduodenoscopy again at the end of month six, and compare the results to the first set of scopes.
This whole experience has given me a new outlook on life, and I have come to appreciate everything I have so much more. So many people have come to my aid without being asked, and it is really quite an amazing thing to see. I only told a few close friends about what I was going through, and within a week I was being brought meals, firewood to heat my house, gifts, treats, etc. I have always been taught to be self-reliant, and I hate feeling like I am a burden to others, so it has been a little hard for me to be the focus of so much help. I don't really consider myself prideful, but this experience has given me the chance to let down some of my walls and allow others help me. I am still not totally comfortable being the center of so much attention, but I am extremely grateful for all of the wonderful people in my life and the amazing things they do. I have never known a group of people more charitable, kind, and capable of greatness, than the people in my life right now. The future looks bright.
The week after Thanksgiving 2011, I was scheduled to go into the Huntsman Cancer Institute for a checkup and to discuss the possibility of being on a new study. My family has a history of what is called Familial Adenomatous Polyposis (FAP), which is a genetic mutation that causes pre-cancerous polyps to grow in the intestines - mostly in the colon. Huntsman has been studying my family for many years, and my mom and grandma both had their colons removed in the early '90's. When I turned 18, I was registered as part of the genetic study at Huntsman. A simple DNA test showed that I had the gene mutation, and therefore was susceptible to colon cancer. I had already had two colonscopies prior to this last visit, and they didn't really find anything to be concerned about. My last one was in 2007, and they said because they didn't find anything, I wouldn't need another checkup for 4 to 5 years.
The purpose of my visit after Thanksgiving was to see if I could qualify to test a new set of drugs that had already shown promise in stopping cancer cell growth in lung cancer patients. To qualify, I would need to have a certain number of polyps above a certain size that they could study. They performed a colonoscopy and an esophagogastroduodenoscopy, and the results kind of caught everybody by surprise. I had hundreds of polyps throughout my entire digestive system - in my esophagus, stomach, duodenum, and colon. They cut out the polyps that fit into the most dangerous classification, but left in all of the rest to study. They mapped out my entire digestive tract very precisely so they would have a baseline to which they could compare future scope results. The whole procedure was pretty amazing to me. For those of you who don't know, Huntsman has the best doctors and best equipment in the world - and I only live 45 minutes away. That's pretty cool, if you ask me.
Needless to say, I qualified for the study. They immediately started me on the new drugs and gave me a packet of papers telling me everything I needed to know and do. To be honest, the list of side-effects was pretty scary to look at, but I figured it was better than the alternative. It took about two weeks for the first real signs of the side-effects to show. I developed a rash that looked like acne all over my head, face, neck, chest, and back. It hurt pretty bad, and it was really embarrassing going out into public looking like I did. Everything itched to the point of almost driving me insane. When I would shower, it would rip everything open and I would be bleeding all over. I couldn't sleep at night because every movement would hurt. It sucked. Luckily, the next time I went up to Huntsman they gave me a clindamycin cream, and later a hydrocortisone cream. Those two creams are the best thing ever. They are working very well, and the rash is quickly disappearing.
Other major side-effects I am currently experiencing include fatigue (like completely exhausted all the time fatigue), shortness of breath, a constant sore throat, loss of appetite (maybe a good thing), and some hair loss. All in all, though, it is tolerable. I have "safety labs" at the end of every month to make sure nothing is abnormal, but I won't really know how effective the drugs are until they do the colonoscopy and esophagogastroduodenoscopy again at the end of month six, and compare the results to the first set of scopes.
This whole experience has given me a new outlook on life, and I have come to appreciate everything I have so much more. So many people have come to my aid without being asked, and it is really quite an amazing thing to see. I only told a few close friends about what I was going through, and within a week I was being brought meals, firewood to heat my house, gifts, treats, etc. I have always been taught to be self-reliant, and I hate feeling like I am a burden to others, so it has been a little hard for me to be the focus of so much help. I don't really consider myself prideful, but this experience has given me the chance to let down some of my walls and allow others help me. I am still not totally comfortable being the center of so much attention, but I am extremely grateful for all of the wonderful people in my life and the amazing things they do. I have never known a group of people more charitable, kind, and capable of greatness, than the people in my life right now. The future looks bright.
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