I'm using my phone for this update so I'll keep things short. Basically, I am still on the foscarnet and waiting for an endoscopy on December 8 to confirm whether I still have CMV and need to remain on the meds. The migraines are getting worse as is the pain in my gut. I have just been told that I will be in Seattle until at least February, which makes Spring 2017 out of the question. To top it off, I have been spending long hours at the VA again.
In short, things are not going well. Hopefully I will have better news at some point. For now, I am going to get some rest and pray that tomorrow is better.
Wednesday, November 30, 2016
Friday, November 18, 2016
Foscarnet
For the past couple of weeks I was on foscarnet twice a day. The cumulative effects of the drug have really taken a toll on me physically. Recently, I transitioned to the point where I take foscarnet only once, but I have yet to notice a change for the better. In fact, the headaches are so bad that I spend a good chunk of the day bedridden and unable to focus. Reading, watching tv, playing video games, or anything that requires concentration or the use of my eyes seems to exacerbate things. So I have been listening to a lot of sermons, podcasts, and random things from iTunes University. It's pretty amazing how much free content is available.
Anyhow, the past 12 hours have been particularly bad, and I have been in bed munching on Tylenol, passing in and out of sleep, and waking up just to swap out ice packs. However, I did want to share a sermon that I listened to in light of current events. In the link below, click on the sermon labeled The Christian and Government.
http://www.piedmontbible.org/site/cpage.asp?cpage_id=180032909&sec_id=180007593
One thing that struck me was the fact that when Paul was writing, Nero was the emperor of Rome. For a Christian, you really can't do much worse than to have Nero as your ruler. So if we are told to submit to an authority as evil as that, I really have no excuse for rebelling against our current system.
Alright, that's all for now; even writing is difficult at this time. My head is throbbing and it's late. I'm going to bed.
Tuesday, November 8, 2016
Update/Random Thoughts
Each day that I'm on foscarnet my symptoms seem to get worse. The migraines are so bad that I'm often forced out of sleep long before dawn. Nevertheless, there is this period in the morning when I first arrive at the hospital where I am feeling well. Then the doctors do their rounds, see me at my best, and tell me that I'm improving. It's like a broken computer that works perfectly when you bring it into the shop for repair. I don't understand how I can feel good at 8:00 am, then a feeling of general malaise in the afternoon, followed by complete anemia and pain in the evenings.
Please don't misconstrue this post as whining or complaining. I'm just trying to keep up with the spirit of the blog and relay my experiences and thoughts. After all, it is called Thoughts from a Cancer Patient. The initial purpose was to express myself and allow others a glimpse into my mind--not because my mind is precious and full of insight. Instead, I noticed that going through such a struggle over several years has a way of changing one's self and introducing thoughts and experiences that one never could have gained otherwise. As I read through my own blog, I notice the transitions I have made, particularly with respect to my faith in Christ. One example is that I initially spent much of my time complaining, and I was extremely negative with regards to my treatment, the VA, the government in general, certain staff members, and other things. Now, when I am in a foul mood, I refrain from blogging until I have either prayed or spent time in the Word. It is amazing the difference I feel after prayer and meditation.
Yesterday was one of those days:
Things began like any other day: I was jolted out of bed because of some pain, I took some oxy, the effects hit by the time I saw the doctors, and I spent the morning taking care of some life issues. One such issue was calling my school to find out my grades from last semester. (My grades were late because I took my exams while in the hospital.) I am proud to report that I passed all classes. I was very happy to hear this and began making preparations to enroll for the Spring semester with the hopes that I am well enough to attend. I then learned that because I withdrew I must now reapply; a process that will set me back about a week in the registration process. In the meantime, I noticed that I will be at the bottom of the waitlist for all the courses I wanted. Moreover, I lost my spot for the grad housing which was the only affordable and close housing option for my budget.
After learning about the housing issue, I then go online to begin searching the Bay Area's property listings. Unfortunately, I cannot even get Zillow to load. I've commented that the VA does not have wifi; well, I'm taking that further to say that all of Seattle has no wifi. Yes, I'm exaggerating, but to be honest the area where I'm staying is like a third world country when it comes to phones and the internet. I try to tether from my phone but the VA is a blackhole for any type of signal. Even our hotel, the Marriott consistently provides only 3-4 mbps with constant interruptions.
After some frustration, I finally give up on the internet and decide to read. I realize that the book I brought was to get an early start on a class that I am now unlikely to get into because of the registration issue.
At this point the effects of the medication are starting to kick in and I begin to feel the energy being drained from my body. I then learn that the CMV in my body is confined to my gut. This means that they cannot detect the CMV through blood tests; they will have to do another endoscopy to see how things stand. That also means that until they do the endoscopy I cannot stop the foscarnet. So rather than being on foscarnet for only 14 days, I will remain on foscarnet for an additional 10 days just to be sure there is no more CMV prior to the endoscopy. In the meantime, my headaches are getting worse, my feet and legs are so swollen from edema that I have trouble walking, and the time period in which I have energy to function is decreasing daily. Although I'm recovering, I feel like I'm dying.
Anyhow, still sitting at the VA I turn on the news--bad idea. I refuse to get political with my blog. This blog has evolved into a tool whereby I can not only share my experiences but also share my faith. I am reluctant to mention anything about our election out of fear that I will turn many people away. Nevertheless, those who know me should at least know who I am not voting for. Also, I am astonished at the level of corruption and deceit that is rampant throughout our political system. I hear many Christians say that God will judge our nation. That's not completely true. I would say that judgement has already come and this election is proof. We should be embarrassed that from a nation of over 300 million people we have an immature populist windbag or a modern Jezebel as our choices. Of course there is a third party candidate who is too aloof to know which planet he is on. Voting third party is a separate issue, and I will never berate anyone who votes for a third party. My issue is with the candidate, and yes I have watched Johnson's interviews.
After six hours at the hospital, I did some grocery shopping while I still had some energy. I arrived home thoroughly exhausted and fell asleep only to be woken up several times in order to take medicine. Basically, every few hours I have to take some type of medication. In the evenings, I have IV medication that I do at home; it takes several hours. Despite being exhausted, I usually don't fall asleep until midnight because I take some steroids in the evening. And yes, they must be taken in the evenings; it is not by choice.
Days like yesterday have become commonplace.
1. If there is good news, it is overshadowed by bad news.
2. Despite being told that I am recovering, I feel very little physical evidence of that.
3. Seven months after treatment and my life still revolves around doctor's visits and treatment.
It is so easy to focus on the negatives. Add migraines, a lack of sleep, general pain, and things become much worse than they seem. But after spending some time in the Word and in prayer I was reminded of how far God has carried me and the blessings He has bestowed upon me. No matter what happens in this life I have an eternal focus that provides hope, contentment, and peace that passes all understanding. Nevertheless, I really need a break from the constant infections in order to truly feel as though I'm recovering.
Please don't misconstrue this post as whining or complaining. I'm just trying to keep up with the spirit of the blog and relay my experiences and thoughts. After all, it is called Thoughts from a Cancer Patient. The initial purpose was to express myself and allow others a glimpse into my mind--not because my mind is precious and full of insight. Instead, I noticed that going through such a struggle over several years has a way of changing one's self and introducing thoughts and experiences that one never could have gained otherwise. As I read through my own blog, I notice the transitions I have made, particularly with respect to my faith in Christ. One example is that I initially spent much of my time complaining, and I was extremely negative with regards to my treatment, the VA, the government in general, certain staff members, and other things. Now, when I am in a foul mood, I refrain from blogging until I have either prayed or spent time in the Word. It is amazing the difference I feel after prayer and meditation.
Yesterday was one of those days:
Things began like any other day: I was jolted out of bed because of some pain, I took some oxy, the effects hit by the time I saw the doctors, and I spent the morning taking care of some life issues. One such issue was calling my school to find out my grades from last semester. (My grades were late because I took my exams while in the hospital.) I am proud to report that I passed all classes. I was very happy to hear this and began making preparations to enroll for the Spring semester with the hopes that I am well enough to attend. I then learned that because I withdrew I must now reapply; a process that will set me back about a week in the registration process. In the meantime, I noticed that I will be at the bottom of the waitlist for all the courses I wanted. Moreover, I lost my spot for the grad housing which was the only affordable and close housing option for my budget.
After learning about the housing issue, I then go online to begin searching the Bay Area's property listings. Unfortunately, I cannot even get Zillow to load. I've commented that the VA does not have wifi; well, I'm taking that further to say that all of Seattle has no wifi. Yes, I'm exaggerating, but to be honest the area where I'm staying is like a third world country when it comes to phones and the internet. I try to tether from my phone but the VA is a blackhole for any type of signal. Even our hotel, the Marriott consistently provides only 3-4 mbps with constant interruptions.
After some frustration, I finally give up on the internet and decide to read. I realize that the book I brought was to get an early start on a class that I am now unlikely to get into because of the registration issue.
At this point the effects of the medication are starting to kick in and I begin to feel the energy being drained from my body. I then learn that the CMV in my body is confined to my gut. This means that they cannot detect the CMV through blood tests; they will have to do another endoscopy to see how things stand. That also means that until they do the endoscopy I cannot stop the foscarnet. So rather than being on foscarnet for only 14 days, I will remain on foscarnet for an additional 10 days just to be sure there is no more CMV prior to the endoscopy. In the meantime, my headaches are getting worse, my feet and legs are so swollen from edema that I have trouble walking, and the time period in which I have energy to function is decreasing daily. Although I'm recovering, I feel like I'm dying.
Anyhow, still sitting at the VA I turn on the news--bad idea. I refuse to get political with my blog. This blog has evolved into a tool whereby I can not only share my experiences but also share my faith. I am reluctant to mention anything about our election out of fear that I will turn many people away. Nevertheless, those who know me should at least know who I am not voting for. Also, I am astonished at the level of corruption and deceit that is rampant throughout our political system. I hear many Christians say that God will judge our nation. That's not completely true. I would say that judgement has already come and this election is proof. We should be embarrassed that from a nation of over 300 million people we have an immature populist windbag or a modern Jezebel as our choices. Of course there is a third party candidate who is too aloof to know which planet he is on. Voting third party is a separate issue, and I will never berate anyone who votes for a third party. My issue is with the candidate, and yes I have watched Johnson's interviews.
After six hours at the hospital, I did some grocery shopping while I still had some energy. I arrived home thoroughly exhausted and fell asleep only to be woken up several times in order to take medicine. Basically, every few hours I have to take some type of medication. In the evenings, I have IV medication that I do at home; it takes several hours. Despite being exhausted, I usually don't fall asleep until midnight because I take some steroids in the evening. And yes, they must be taken in the evenings; it is not by choice.
Days like yesterday have become commonplace.
1. If there is good news, it is overshadowed by bad news.
2. Despite being told that I am recovering, I feel very little physical evidence of that.
3. Seven months after treatment and my life still revolves around doctor's visits and treatment.
It is so easy to focus on the negatives. Add migraines, a lack of sleep, general pain, and things become much worse than they seem. But after spending some time in the Word and in prayer I was reminded of how far God has carried me and the blessings He has bestowed upon me. No matter what happens in this life I have an eternal focus that provides hope, contentment, and peace that passes all understanding. Nevertheless, I really need a break from the constant infections in order to truly feel as though I'm recovering.
Friday, November 4, 2016
Answer to Prayer
Yesterday I received the test results from my endoscopy, which showed no evidence of GVHD. This means that I can again resume tapering from the steroids and immunosuppressants.
Because I have been on such a high dose of steroids and immunosuppressants for such a long time, it will take several months for noticeable improvements. Also, the taper is going to be very slow. Nevertheless, it's happening; and for the first time since early May, I do not have any sings of GVHD. I am very thankful to God for answering my prayer in this way. Honestly, I was not expecting such good results because physically I have not been doing well.
Yet the culprit for my physical pain and exhaustion recently has turned out not to be the GVHD nor is it completely the fault of the CMV infection. In order to fight off the CMV, I take an antibiotic called foscarnet twice a day intravenously. Foscarnet is a very nasty drug that causes headaches, edema, and really messes with your stomach. The longer you are on it, the worse the side effects. So my physical ailments right now are likely the result of the foscarnet and other medications.
This is all good news in a way: 1) Once the foscarnet kills off the infection, I can stop taking the drug, which will help me improve physically; 2) Because there are no signs of GVHD, I can slowly resume my taper; 3) As I commence with the taper, my blood counts should stabilize, which means more energy and the ability to resist or fight off infections like a normal person; and 4) As I improve, I will have less appointments and tests, which means more time to rest and recover. I am really hoping to recover in time for the Spring semester.
Praise God for this wonderful answer to our prayers.
Because I have been on such a high dose of steroids and immunosuppressants for such a long time, it will take several months for noticeable improvements. Also, the taper is going to be very slow. Nevertheless, it's happening; and for the first time since early May, I do not have any sings of GVHD. I am very thankful to God for answering my prayer in this way. Honestly, I was not expecting such good results because physically I have not been doing well.
Yet the culprit for my physical pain and exhaustion recently has turned out not to be the GVHD nor is it completely the fault of the CMV infection. In order to fight off the CMV, I take an antibiotic called foscarnet twice a day intravenously. Foscarnet is a very nasty drug that causes headaches, edema, and really messes with your stomach. The longer you are on it, the worse the side effects. So my physical ailments right now are likely the result of the foscarnet and other medications.
This is all good news in a way: 1) Once the foscarnet kills off the infection, I can stop taking the drug, which will help me improve physically; 2) Because there are no signs of GVHD, I can slowly resume my taper; 3) As I commence with the taper, my blood counts should stabilize, which means more energy and the ability to resist or fight off infections like a normal person; and 4) As I improve, I will have less appointments and tests, which means more time to rest and recover. I am really hoping to recover in time for the Spring semester.
Praise God for this wonderful answer to our prayers.
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