I just want to post a quick update to say that my treatment has been delayed until April 12 at 13:00. The reason for the delay is that my donor required an additional 24 hours. That is all I know and no further details are authorized because I am not permitted any identifiable information about my donor.
I decided to spend the day doing homework for an MBA course. Because I'm a bit behind in my studies, I need to get back to cramming a semester's worth of corporate finance into this evening. Nevertheless, I am very thankful for this extra day where I can sit with my family, be in peace, and eat real food. I'm definitely dreading this 40-day stint in the hospital.
Monday, April 11, 2016
Sunday, April 10, 2016
Last Day Before the Procedure
Ever since I relapsed, I have been asking oncologists about my overall prognosis. Although I do not put my faith in numbers, it certainly helps me to understand the severity of the situation and realize the true nature of things. Today I had a discussion with my transplant specialist that should have taken place several months ago. Based upon his understanding, it appears as though I have a 30 to 40 percent chance of surviving more than five years. This may sound grim, but I assure you that relative to what I was thinking, this is quite encouraging. For the first time since I relapsed, I was given factual evidence that this grueling treatment could result in me living a long and healthy life.
Tomorrow at 13:00 PST, I begin the most important procedure of my life so far. I will trust in the Lord and rest soundly knowing that I am under the care of the best transplant specialists. The VA works closely with the Fred Hutchinson Cancer Research Center, the leading stem cell transplant center in the world.
Tomorrow at 13:00 PST, I begin the most important procedure of my life so far. I will trust in the Lord and rest soundly knowing that I am under the care of the best transplant specialists. The VA works closely with the Fred Hutchinson Cancer Research Center, the leading stem cell transplant center in the world.
Monday, April 4, 2016
Last Week before the Transplant--I hope.
I apologize for not providing enough updates and responding intermittently to individuals. I'm aware of many people waiting on a response, and I really appreciate all those who continue to keep in touch.
Also, I rarely check social media in between hospital visits; when I do, it is solely for the purpose of providing updates or tending to my own page. I won't make excuses, but I will offer an explanation.
Because of my upcoming transplant, life is extremely busy. My mornings and days are often spent at the VA or taking care of some issue and evenings are spent catching up on school work and getting ready for finals. It is imperative that I enter the hospital somewhat ready for my exams. Cancer treatment is not exactly conducive to studying. Even if there is sufficient downtime, chemo brain (a real thing that I did not invent) and other side effects result in little or no quality time for studying.
I was hoping to see Mount Rainier or the Skagit Tulip Festival with my wife prior to treatment, but the VA will not allow me to migrate more than a 30-minute radius from the facility. I could risk them not finding out, but it is very common for me to get a call requesting that I check in for unscheduled medical tests. Let this be a lesson to those clamoring for a national solution to their individual health problems: If you want the government to fix it, be prepared to surrender control and personhood; you will have little say in your care and anything affecting that care, which extends to many other activities--like smelling the flowers, keeping your dog, and continuing with work. Nevertheless, I am very grateful to have VA coverage and my doctors appear extremely competent.
Perhaps it is best that I am not allowed to sightsee too much. Even if I had the time, it might not be beneficial for someone with a compromised immune system. Presently, I am avoiding all crowded places. I want to kick this cold ASAP and move on with this transplant as scheduled. Time is not on my side, and I risk losing my donor if there are further delays. This Thursday I will confirm whether or not I must push back my transplant because of a pesky cold.
Also, I rarely check social media in between hospital visits; when I do, it is solely for the purpose of providing updates or tending to my own page. I won't make excuses, but I will offer an explanation.
Because of my upcoming transplant, life is extremely busy. My mornings and days are often spent at the VA or taking care of some issue and evenings are spent catching up on school work and getting ready for finals. It is imperative that I enter the hospital somewhat ready for my exams. Cancer treatment is not exactly conducive to studying. Even if there is sufficient downtime, chemo brain (a real thing that I did not invent) and other side effects result in little or no quality time for studying.
I was hoping to see Mount Rainier or the Skagit Tulip Festival with my wife prior to treatment, but the VA will not allow me to migrate more than a 30-minute radius from the facility. I could risk them not finding out, but it is very common for me to get a call requesting that I check in for unscheduled medical tests. Let this be a lesson to those clamoring for a national solution to their individual health problems: If you want the government to fix it, be prepared to surrender control and personhood; you will have little say in your care and anything affecting that care, which extends to many other activities--like smelling the flowers, keeping your dog, and continuing with work. Nevertheless, I am very grateful to have VA coverage and my doctors appear extremely competent.
Perhaps it is best that I am not allowed to sightsee too much. Even if I had the time, it might not be beneficial for someone with a compromised immune system. Presently, I am avoiding all crowded places. I want to kick this cold ASAP and move on with this transplant as scheduled. Time is not on my side, and I risk losing my donor if there are further delays. This Thursday I will confirm whether or not I must push back my transplant because of a pesky cold.
Thursday, March 31, 2016
Informative Update
Because I'm not in a very good place mentally, I'm going to keep this post largely factual.
1. On 19 April, I will begin my transplant from an unrelated donor. Roughly one week prior to the transplant, on 11 April, I will be hospitalized to begin total body radiation and a very heavy round of chemo prior to the transplant.
2. Physically I am starting to recover. I am eating normally and trying to fatten up so I have some weight to lose, and I am exercising. Today I ran a 5k in just under 28 minutes. Although this would have been nothing to brag about prior to treatment, I'm surprised that I did this well. When I was first diagnosed with cancer two years ago, I could barely walk after the treatment. However, I am told that I'll be severely disabled for several months after the transplant. I'm trying to go in as physically strong as I can.
3. For those who pray, there is a request: In order to undergo the transplant, I must be free of any illness because even a common cold can become deadly without an immune system. Unfortunately, I have contracted the common cold. If I don't get better soon, the doctors will postpone the procedure. A change in timeline, could affect the availability of my donor; it is not uncommon for a donor to back out because of a schedule change. This donor is ideal for my situation, and I would like to keep things as scheduled. Also, time is not on my side (if you get my meaning).
4. It looks like I will be losing my dog for a year. I'm rather upset by the lack of communication in this whole mess. Nevertheless, if that's all I lose in this process, I'll consider myself lucky. The silver lining is that I have arranged it so that I can reclaim my dog after about a year and a half.
Other than that, life is extremely busy, and I must cram a lot into these next two weeks. I will continue to post developments as they arise.
I said that this post would be "largely factual"; nevertheless, I will insert one random thought:
1. On 19 April, I will begin my transplant from an unrelated donor. Roughly one week prior to the transplant, on 11 April, I will be hospitalized to begin total body radiation and a very heavy round of chemo prior to the transplant.
2. Physically I am starting to recover. I am eating normally and trying to fatten up so I have some weight to lose, and I am exercising. Today I ran a 5k in just under 28 minutes. Although this would have been nothing to brag about prior to treatment, I'm surprised that I did this well. When I was first diagnosed with cancer two years ago, I could barely walk after the treatment. However, I am told that I'll be severely disabled for several months after the transplant. I'm trying to go in as physically strong as I can.
3. For those who pray, there is a request: In order to undergo the transplant, I must be free of any illness because even a common cold can become deadly without an immune system. Unfortunately, I have contracted the common cold. If I don't get better soon, the doctors will postpone the procedure. A change in timeline, could affect the availability of my donor; it is not uncommon for a donor to back out because of a schedule change. This donor is ideal for my situation, and I would like to keep things as scheduled. Also, time is not on my side (if you get my meaning).
4. It looks like I will be losing my dog for a year. I'm rather upset by the lack of communication in this whole mess. Nevertheless, if that's all I lose in this process, I'll consider myself lucky. The silver lining is that I have arranged it so that I can reclaim my dog after about a year and a half.
Other than that, life is extremely busy, and I must cram a lot into these next two weeks. I will continue to post developments as they arise.
I said that this post would be "largely factual"; nevertheless, I will insert one random thought:
I’m very tired of seeing Che Guevara romanticized. He was the cofounder of an evil police state that has enslaved and murdered countless individuals. Somehow, he's the Trotsky while Castro is the Lenin of the group. I'm not saying Trotsky was good; I'm saying that both are often romanticized as the "good" or "pure" communists. That's like romanticizing Satan for being "pure" evil. Okay, I've been saving that for awhile. More to come...
Sunday, March 20, 2016
Me vs. the VA
During small talk with a nurse, I revealed that I had my dog with me at the hotel room. I didn't think this was a problem because I called the hotel and asked for permission prior to coming. That nurse then decided to tell on me, and I got a call today asking if I would give my dog up. Had I not fought back, my dog would now be on his way to a shelter somewhere.
Ever since I learned that I would be coming to Seattle, I was largely kept in the dark on everything. Moreover, the little bit of information that I was given has turned out to be incorrect. Because the VA was not responding to my questions, I started coordinating with the source. That means that with regards to the hotel, I called the hotel directly and asked about my pet. I was told by two separate employees that I could bring my pet for the duration of my stay.
I'm getting sick and tired of being in an environment where people are always out to get one another and tattling about rule violations. I know exactly who tattled on me, and I've had it with these passive aggressive employees who pretend to care and ask questions only to use that information against you later. There are so many rules, that it's easy to be in violation because those who are supposed to inform you do not, and the rule are infinite and petty. One of the fundamental legal principles concerns notice requirements and the right of each individual to be informed of a standard prior to being held to that standard. Yet, somehow, the government is always immune to rules that they create.
The employee initially called me and said that I was in violation of the VA's contract with the hotel by bringing my pet. However, I called the hotel and asked about the pet policy with regards to the VA. When I told this to the VA employee, she changed her story and said that the real reason I cannot have the pet is because my immune system will be compromised. Although this is true, the initial statement was a lie; she admitted to not calling the hotel.
I am tired of fighting for the stupidest things: fighting to keep food in a fridge, fighting to get pain medication for severe nerve damage, fighting with the VA to stay enrolled in school (that is between me and Berkeley, the VA should have no say in that matter), and fighting to keep my dog from going to some shelter. The lesson is that I cannot trust anyone here; they are concerned about minor policy violations more than they are concerned about their patients. If they truly cared about my health and safety, they would not have put a cancer patient next to drug addicts, alcoholics, and people with severe mental problems. It's very unsafe where I am, and I've already been physically threatened.
It's me versus the VA. I will not speak to them about my personal life; I will constantly be on guard with each and every staff member; I will answer yes and no with nothing more, treating each conversation like an interrogation. I just want to get this transplant over with and leave this place.
I am a number that is being pushed through a very broken system.
Ever since I learned that I would be coming to Seattle, I was largely kept in the dark on everything. Moreover, the little bit of information that I was given has turned out to be incorrect. Because the VA was not responding to my questions, I started coordinating with the source. That means that with regards to the hotel, I called the hotel directly and asked about my pet. I was told by two separate employees that I could bring my pet for the duration of my stay.
I'm getting sick and tired of being in an environment where people are always out to get one another and tattling about rule violations. I know exactly who tattled on me, and I've had it with these passive aggressive employees who pretend to care and ask questions only to use that information against you later. There are so many rules, that it's easy to be in violation because those who are supposed to inform you do not, and the rule are infinite and petty. One of the fundamental legal principles concerns notice requirements and the right of each individual to be informed of a standard prior to being held to that standard. Yet, somehow, the government is always immune to rules that they create.
The employee initially called me and said that I was in violation of the VA's contract with the hotel by bringing my pet. However, I called the hotel and asked about the pet policy with regards to the VA. When I told this to the VA employee, she changed her story and said that the real reason I cannot have the pet is because my immune system will be compromised. Although this is true, the initial statement was a lie; she admitted to not calling the hotel.
I am tired of fighting for the stupidest things: fighting to keep food in a fridge, fighting to get pain medication for severe nerve damage, fighting with the VA to stay enrolled in school (that is between me and Berkeley, the VA should have no say in that matter), and fighting to keep my dog from going to some shelter. The lesson is that I cannot trust anyone here; they are concerned about minor policy violations more than they are concerned about their patients. If they truly cared about my health and safety, they would not have put a cancer patient next to drug addicts, alcoholics, and people with severe mental problems. It's very unsafe where I am, and I've already been physically threatened.
It's me versus the VA. I will not speak to them about my personal life; I will constantly be on guard with each and every staff member; I will answer yes and no with nothing more, treating each conversation like an interrogation. I just want to get this transplant over with and leave this place.
I am a number that is being pushed through a very broken system.
Wednesday, March 16, 2016
Arrived in Seattle
I have arrived in Seattle and am beginning preliminary tests. The actual treatment should start early April.
Physically, I am exhausted and running on empty. I think I just need some rest, but there's very little down time. Mentally, I am just ready to be done, regardless of the results. I'm going through the motions, but I do not have high hopes.
Longterm treatment with the VA is soul crushing.
Monday, March 7, 2016
My Recent Move
This past weekend, a local church arrived at my home and helped my wife and I move our things into storage. It is amazing that a group of people, whom I never met, drove nearly an hour to spend half the day lifting another person's heavy objects free of charge. Did I mention that it was pouring rain?
I used to despise the church. I saw Christians as a bunch of pious, legalistic, and condescending individuals who were too busy looking at the speck in their brother's eye while ignoring the log in their own. All of that changed since I have been diagnosed with cancer. I made the mistake that our society makes: generalizing the Christian faith for the failure of a few Christians (or blaming God for the sins of man). Last week was a reminder that true believers are a living testimony of our loving Father. I have lifelong "friends" who would not do half of what these strangers have done for me.
Thank you to the Evangelical Church of Berkeley. Even in a spiritual wasteland such as Berkeley, California, God and His followers are alive and well.
I used to despise the church. I saw Christians as a bunch of pious, legalistic, and condescending individuals who were too busy looking at the speck in their brother's eye while ignoring the log in their own. All of that changed since I have been diagnosed with cancer. I made the mistake that our society makes: generalizing the Christian faith for the failure of a few Christians (or blaming God for the sins of man). Last week was a reminder that true believers are a living testimony of our loving Father. I have lifelong "friends" who would not do half of what these strangers have done for me.
Thank you to the Evangelical Church of Berkeley. Even in a spiritual wasteland such as Berkeley, California, God and His followers are alive and well.
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