It is amazing the difference a day can make. I tested negative for the cytomegalovirus and the symptoms from the BK virus have severely lessened. Rather than having continuous pain, I seem to only have two or three flare ups throughout the day, each lasting an hour tops. In fact, I was able to get four hours sleep straight and was amazed to awake for an entirely different sensation. I have never been so thankful to feel pain; meaning that I awoke for an entirely different type of pain, which came from my skin.
Between the remains of the BK virus, shedding all my skin, and the recurring joint pain, I'm still not feeling as though progress is being made. That being said, we are starting the immunosuppressant taper again and I pushed to be discharged tomorrow. As long as things are controlled, I'd rather deal with pain management at home rather than at the hospital. I'll still have daily visits for at least a month as they monitor my taper.
Despite the fact that I was so consumed with the BK virus symptoms, the lead oncologist explained that my recent GVHD flare was quite deadly this time around. I'm praying that I handle this round of tapering better. If not, I get another brush with death, more immunosuppressants, and start conceding that I will have a much longer road to recovery and that recovery will never be 100 percent.
Thursday, June 30, 2016
Wednesday, June 29, 2016
Knock on Wood
The BK virus appears to be somewhat diminished. Not only have test results shown that I am responding to treatment, but I am experiencing somewhat less pain in that area. Instead of having a constant stream of pain from the BK virus, I only get a few hours a day where it feels as though I'm passing a kidney stone. Also, for the first time in weeks, I just slept two hours without the BK virus jolting me awake; instead, I woke up from pain in my skin, which is related to the GVHD.
Because the GVHD destroyed my skin, like a snake, I am shedding my former body and receiving completely new skin. Not only is it more painful than I imagined, it's actually quite disgusting, and I get the worst stares when leaving the ward. In order to treat the skin, I have been undergoing PUVA treatments at an outside clinic. PUVA treatments are brief, controlled shots of ultraviolet radiation to my skin. It's almost like going tanning, but with a completely different goal. Although the treatment is primarily used for psoriasis, they have seen some success in using the treatment on skin GVHD. The goal is that these treatments will contain my GVHD while I taper off the steroids.
I will write more later. For now I am going to try to get another hour or two of sleep.
Because the GVHD destroyed my skin, like a snake, I am shedding my former body and receiving completely new skin. Not only is it more painful than I imagined, it's actually quite disgusting, and I get the worst stares when leaving the ward. In order to treat the skin, I have been undergoing PUVA treatments at an outside clinic. PUVA treatments are brief, controlled shots of ultraviolet radiation to my skin. It's almost like going tanning, but with a completely different goal. Although the treatment is primarily used for psoriasis, they have seen some success in using the treatment on skin GVHD. The goal is that these treatments will contain my GVHD while I taper off the steroids.
I will write more later. For now I am going to try to get another hour or two of sleep.
Friday, June 24, 2016
Please Pray
I'm asking for prayer. I need relief from this BK virus. I have not slept since it began and it is seriously the worst thing imaginable. For awhile I thought that I might have some relief, but I'm going on two weeks of this and things don't really seem to be progressing.
Through my school account, I was able to finally read some medical journals and studies regarding BKV. For those who experience acute symptoms such as myself, there is a 70 percent cure rate using a drug called cidofovir. I am on this drug and it is given once a week, every Wednesday. Nevertheless, 30 percent of people do not respond to the drug. Because of the high doses of immunosuppressants, I am much more likely to be in that 30 percent category and there is a significant mortality rate associated.
As of now, I drink a gallon of water per day in order to flush the system. However, like a double-edged sword, this leads to increased urination and pain. Typically, there is an hour or two hour period every day where I experience a period where it feels as though I am passing kidney stones. Throughout the remainder of the day, I am using the facilities every 10-30 minutes. If I choose not to use the facilities, the pain increases and I will have further episodes. Because of the lack of sleep, I'm completely disoriented and I'm not healing elsewhere.
I have said that GVHD is the primary concern. That is true, for the long run. However, for now, I need this BK virus gone--not because of pain but because of exhaustion.
I have been trying to keep pain medication to a minimum so that I could be discharged ASAP. I finally realized that I will not be discharged with this virus. Moreover, even if I were discharged, life wouldn't improve as long as this virus remains. I have decided to start taking pain medications with the hope that it might at least knock me out and provide some sleep. So far, it's not working. 2mg of IV dilaudid did absolutely nothing for relief or sleep.
Through my school account, I was able to finally read some medical journals and studies regarding BKV. For those who experience acute symptoms such as myself, there is a 70 percent cure rate using a drug called cidofovir. I am on this drug and it is given once a week, every Wednesday. Nevertheless, 30 percent of people do not respond to the drug. Because of the high doses of immunosuppressants, I am much more likely to be in that 30 percent category and there is a significant mortality rate associated.
As of now, I drink a gallon of water per day in order to flush the system. However, like a double-edged sword, this leads to increased urination and pain. Typically, there is an hour or two hour period every day where I experience a period where it feels as though I am passing kidney stones. Throughout the remainder of the day, I am using the facilities every 10-30 minutes. If I choose not to use the facilities, the pain increases and I will have further episodes. Because of the lack of sleep, I'm completely disoriented and I'm not healing elsewhere.
I have said that GVHD is the primary concern. That is true, for the long run. However, for now, I need this BK virus gone--not because of pain but because of exhaustion.
I have been trying to keep pain medication to a minimum so that I could be discharged ASAP. I finally realized that I will not be discharged with this virus. Moreover, even if I were discharged, life wouldn't improve as long as this virus remains. I have decided to start taking pain medications with the hope that it might at least knock me out and provide some sleep. So far, it's not working. 2mg of IV dilaudid did absolutely nothing for relief or sleep.
Thursday, June 23, 2016
Relief Denied
Well, my brief moment of joy at getting three hours of rest was short lived. The head doctor just told me that I will be at the hospital as an in-patient for a "long while." GVHD, the primary reason for hospitalization, is somewhat controlled. Granted, it needs to show signs of improvement, but we were expecting such improvement in a matter of days. The BK virus and pain will not keep me in the hospital, and I was really looking forward to being discharged by the end of the week. Instead, I'm here indefinitely and caught in a nice little Catch-22: They want to see me sleeping more so that I'm functioning well enough; but in order to sleep, I really need to get out of the hospital.
This really crushed my spirits today. Honestly, I would rather be at home rolling on the floor without any pain medications than to be stuck in the hospital for even one more day. The interruptions are constant and who your nurse is can either make things tolerable or it can be ruinous.
Finally, I need to get off this high dose of Prednisone. I have been reading about the damaging side effects of just 20 mg per day. I'm on 200 mg and it's killing me. Also, refer to the above Catch-22; Prednisone is the main culprit of my insomnia if the BK virus weren't an issue.
Some Relief
It might be too soon to tell, but it looks like BK symptoms could be starting to subside. We'll see, but I was able to sleep slightly over three hours last night. Granted, that's not ideal; however, it is a step in the right direction.
Perspective
I woke up today and forgot who I was for about ten minutes. Those were the best ten minutes of my life since I have been admitted to the hospital this time.
This BK virus is the most excruciating thing I have ever experienced. I was reflecting on my cancer treatment thus far, and I recall three periods of very intense pain: a virus known as C-difficile, an infection in my mouth that destroyed part of my nervous system, and this BK virus. This takes the cake, bar none. As a 34-year-old male, I cannot remember the last time I was brought to my knees screaming from physical pain. This pushes me off the edge every single day and it's frustrating because very little is known about it and symptoms very widely. If you have a kidney stone, the pain associated is well known. However, BK is often benign or asymptomatic. I felt as though it took nearly a week to at least receive validation that my pain was real. During that time, I really began to feel isolated and angry. The lack of sleep, constant pain, knowing that this could last much longer than anticipated, and the feeling of not being taken seriously became a bit overwhelming.
Perspective:
Let's put this into perspective. As of now, it has been roughly 11 days since this all really began. Think of people suffering from lifelong ailments such as MS, rheumatoid arthritis, trigeminal neuralgia, interstitial cystitis, etc. What about POWs or those who are tortured. I recently read an article about a woman who was selling her 11-year-old daughter for sex so that she could get her drug fix.
Matthew 27, Mark 15, Luke 23, and John 19--the crucifixion of Christ. Not only did he undergo one of the most physically painful forms of torture known to man throughout history, he did so for others and not for himself. People call me brave, but I'm not. My choice is either this transplant or death. Not only did I choose life, but I had no idea that I would experience such hardship post transplant. Christ, on the other hand, was fully aware of what He would experience (Luke 22:42) and chose to suffer for our sake regardless of the suffering. Added to that, imagine the emotional torment that He experienced when forsaken. Matthew 27:46.
One day I'll look back on this as nothing more than a dream. This too will pass.
On a lighter note, until it does pass, I just fired my nurse. I requested not to have a particular nurse during this period. She tends to be very rigid and puts the book before the patient. Right now, I need some flexibility and understanding. I don't need to be writhing on the floor waiting for meds because someone is more concerned with vitals over pain management. Speaking of pain management, think of all the suffering without meds. That really puts things into perspective.
This BK virus is the most excruciating thing I have ever experienced. I was reflecting on my cancer treatment thus far, and I recall three periods of very intense pain: a virus known as C-difficile, an infection in my mouth that destroyed part of my nervous system, and this BK virus. This takes the cake, bar none. As a 34-year-old male, I cannot remember the last time I was brought to my knees screaming from physical pain. This pushes me off the edge every single day and it's frustrating because very little is known about it and symptoms very widely. If you have a kidney stone, the pain associated is well known. However, BK is often benign or asymptomatic. I felt as though it took nearly a week to at least receive validation that my pain was real. During that time, I really began to feel isolated and angry. The lack of sleep, constant pain, knowing that this could last much longer than anticipated, and the feeling of not being taken seriously became a bit overwhelming.
Perspective:
Let's put this into perspective. As of now, it has been roughly 11 days since this all really began. Think of people suffering from lifelong ailments such as MS, rheumatoid arthritis, trigeminal neuralgia, interstitial cystitis, etc. What about POWs or those who are tortured. I recently read an article about a woman who was selling her 11-year-old daughter for sex so that she could get her drug fix.
Matthew 27, Mark 15, Luke 23, and John 19--the crucifixion of Christ. Not only did he undergo one of the most physically painful forms of torture known to man throughout history, he did so for others and not for himself. People call me brave, but I'm not. My choice is either this transplant or death. Not only did I choose life, but I had no idea that I would experience such hardship post transplant. Christ, on the other hand, was fully aware of what He would experience (Luke 22:42) and chose to suffer for our sake regardless of the suffering. Added to that, imagine the emotional torment that He experienced when forsaken. Matthew 27:46.
One day I'll look back on this as nothing more than a dream. This too will pass.
On a lighter note, until it does pass, I just fired my nurse. I requested not to have a particular nurse during this period. She tends to be very rigid and puts the book before the patient. Right now, I need some flexibility and understanding. I don't need to be writhing on the floor waiting for meds because someone is more concerned with vitals over pain management. Speaking of pain management, think of all the suffering without meds. That really puts things into perspective.
Monday, June 20, 2016
Not a Good Day
Today is the first day in a long time that I became extremely angry. Thankfully, with my BK situation, I was able to hide in the bathroom for awhile before erupting.
You don't have to empathize, understand, or even be sympathetic; however, I do expect that those who read this are aware of my very sensitive sleep situation. Basically, I'm exhausted, I haven't really slept since late April, and the coup de grace has manifested itself through the BK virus.
Side note: Whenever I search for personal accounts or go through cancer forums, it seems that for most people, BK is just another side effect that they mention in passing. However, when I talk to the nurses or doctors on the ward, they say that most people who contract BK find it to be overwhelming. It's odd, but I cannot find good information on BK, nor can I ascertain when it will subside or at least start to improve.
Anyhow, I finally fell asleep this morning and would have been on track for three precious hours of uninterrupted sleep. Within 15 minutes of falling asleep, I was woken up to be told that construction had commenced within 5 miles of the VA facility. As a policy, any immunocompromised patient had to wear a surgical mask until told otherwise. FYI, all my oncologists agree that those masks are worthless. All they do is keep others at bay because people think that you are highly infectious.
Then, once I was woken up, there was an unexpected shift change. Each time nurses change their shift, I have to do a little routine: take a set of vitals while sitting, take a set while standing, listen to your lungs, listen to your heart, what are all your symptoms, rate your pain on a 1-10 scale, where is the pain, what happens to the pain after the meds, let's review your meds, squeeze my hands, take off your clothes and show me the rash, check your weight, when was the last bowel movement, how was it formed, blah, blah, blah. What is the point of a pass down and log entries if you are just going to reiterate everything with the patient. Yes, yes, yes, I understand the need to be thorough and double check, policies, procedures, whatever; but let's use some discretion when a person has a nasty virus that prevents sleep and they have finally fallen asleep.
Now it's passed 09:00 on a Monday and we have a full staff. Everyone stops by thinking their five minute question or concern for me is not a big deal. In the aggregate, things add up and I won't be able to sleep until after the duty day which is around 17:00. Yet 18:00 marks the time for Prednisone--the nasty steroid--which should have me up and jittery for a few hours.
I've said it before, and I will say it again: hospitals are essential for fixing people up, but they are the absolute worst for recovery.
Also, today is going to be a long day. I have an outside appointment for some treatment that should help controlling the GVHD. Nothing like a burning/stabbing pain up your urethra while sitting in traffic or waiting for an appointment. And if that's not enough, I have gained ten pounds of IV fluids as they try to flush my system; i.e., more urination, more blood, more pain.
Anyhow, I think I've complained enough for now; but I am getting frustrated with this hospital stay. It was unexpected, I don't have an end date, and I'm unable to control my sleep schedule. Apparently "DO NOT DISTURB" is a magnet for disturbances. It's like an attractive nuisance, and I'm the one who is liable for all the petty intrusions.
You don't have to empathize, understand, or even be sympathetic; however, I do expect that those who read this are aware of my very sensitive sleep situation. Basically, I'm exhausted, I haven't really slept since late April, and the coup de grace has manifested itself through the BK virus.
Side note: Whenever I search for personal accounts or go through cancer forums, it seems that for most people, BK is just another side effect that they mention in passing. However, when I talk to the nurses or doctors on the ward, they say that most people who contract BK find it to be overwhelming. It's odd, but I cannot find good information on BK, nor can I ascertain when it will subside or at least start to improve.
Anyhow, I finally fell asleep this morning and would have been on track for three precious hours of uninterrupted sleep. Within 15 minutes of falling asleep, I was woken up to be told that construction had commenced within 5 miles of the VA facility. As a policy, any immunocompromised patient had to wear a surgical mask until told otherwise. FYI, all my oncologists agree that those masks are worthless. All they do is keep others at bay because people think that you are highly infectious.
Then, once I was woken up, there was an unexpected shift change. Each time nurses change their shift, I have to do a little routine: take a set of vitals while sitting, take a set while standing, listen to your lungs, listen to your heart, what are all your symptoms, rate your pain on a 1-10 scale, where is the pain, what happens to the pain after the meds, let's review your meds, squeeze my hands, take off your clothes and show me the rash, check your weight, when was the last bowel movement, how was it formed, blah, blah, blah. What is the point of a pass down and log entries if you are just going to reiterate everything with the patient. Yes, yes, yes, I understand the need to be thorough and double check, policies, procedures, whatever; but let's use some discretion when a person has a nasty virus that prevents sleep and they have finally fallen asleep.
Now it's passed 09:00 on a Monday and we have a full staff. Everyone stops by thinking their five minute question or concern for me is not a big deal. In the aggregate, things add up and I won't be able to sleep until after the duty day which is around 17:00. Yet 18:00 marks the time for Prednisone--the nasty steroid--which should have me up and jittery for a few hours.
I've said it before, and I will say it again: hospitals are essential for fixing people up, but they are the absolute worst for recovery.
Also, today is going to be a long day. I have an outside appointment for some treatment that should help controlling the GVHD. Nothing like a burning/stabbing pain up your urethra while sitting in traffic or waiting for an appointment. And if that's not enough, I have gained ten pounds of IV fluids as they try to flush my system; i.e., more urination, more blood, more pain.
Anyhow, I think I've complained enough for now; but I am getting frustrated with this hospital stay. It was unexpected, I don't have an end date, and I'm unable to control my sleep schedule. Apparently "DO NOT DISTURB" is a magnet for disturbances. It's like an attractive nuisance, and I'm the one who is liable for all the petty intrusions.
Civ 5
I'm exhausted from a lack of sleep, but I cannot sleep until some meds kick in and the pain is again managed. Solution: Civ 5. I can make it as easy or difficult as I want and mindlessly click through turns. Anything more engaging is frustrating or futile.
Lots of people suggest reading, but after a week without sleep, I don't process much. Ten bucks for Civ 5 was well worth it. Oh, no wifi here so I tether from my phone. Works well for audio sermons, but anything more intense is cumbersome.
Lots of people suggest reading, but after a week without sleep, I don't process much. Ten bucks for Civ 5 was well worth it. Oh, no wifi here so I tether from my phone. Works well for audio sermons, but anything more intense is cumbersome.
Saturday, June 18, 2016
READ AT YOUR OWN RISK
Warning: This post will largely describe the symptoms that I have been experiencing. I will refrain from full disclosure, but it may make some uncomfortable.
Let us begin with the good news:
On Thursday, I received test results showing that my body is almost 100 percent donor cells. In terms of cancer and ultimate treatment progression, this is the best news that I could have received. I can still relapse or experience other issues that will later frustrate progress, but this is a positive milestone and hopefully the donor's cells are able to remain rooted and prevent a recurrence of the cancer. I praise God for this answer to prayer, and I thank those who are praying for me and supporting me.
So why am I in the hospital?
To reiterate, I am on a hefty dose of immunosuppressants, which keeps my immune system at bay while the donor's cells take over. (For those in the medical field, forgive the oversimplification.) As they took me off the immunosuppressants, the GVHD returned and things started to spiral downhill from there. My GVHD manifests itself in the skin and looks like a total body first-degree burn. It vacillates between severe itchiness, burning, and pain on contact. It is not imminently deadly, but it is debilitating. It can also lead to complications and morbidity; hence the need to get rid of it via steroids. The steroids then suppress my immune system, which led to a nasty infection known as BK hemorrhagic cystitis.
Quick aside: When I was in the military, we used to have frequent STD briefings to warn service members of the dangers of sleeping around. Based upon my recollections of those briefings and a quick internet search, having BK hemorrhagic cystitis can range from being an asymptomatic carrier of chlamydia to experiencing the full range of symptoms constantly, even while not using the facilities. I am more in the latter category. To make matters worse, the treatment can take weeks to months before things clear. I am on day seven without improvement. Narcotics will dull the pain for periods, but not long enough. Anyhow, that is all I am going to say for the BK virus, which began on my birthday.
The ultimate reason for hospitalization was that I also contracted citomegalovirus (CMV). Again, this does have a morbidity rate, but for now it is nowhere near deadly. Instead, I get more nasty side effects with the worst being that my joints lock, and I sometimes experience a charlie horse that runs throughout my body. Coupled with the steroids that also cause joint pain, there are times where I just lie in bed and cannot move my hands or feet because they are completely immobile. Usually this only lasts for 10-20 minutes at a time, but this evening I had a bad spell lasting nearly an hour.
Because of all this and insomnia from the steroids, I cannot seem to sleep for longer than 30 minutes or an hour. There are other side effects, but everything really pales in comparison to the above. Although it feels as though my body is physically dying, I am told that all of this is superficial.
Bottom line: I am in the hospital for closer monitoring, and a new attack plan to fight against the GVHD recurrence. Once the GVHD is under control, the oncologists have a plan B and will begin to again wean me off the steroids. This kind of a bump is not at all uncommon for my type of transplant; however, some people do stay on the steroids for years until they are able to begin a normal life again. In my situation, because the donor's cells took root so quickly, the oncologists think that my GVHD and symptoms were more acute. Like a blazing fire, it will burn hot, fast, and appear devastating; however, it should die out and not become a chronic, slow burn lasting years. I pray this is the case.
In the meantime, narcotics allow periods of relief, the docs and nurses at the VA are doing an exceptional job, my wife is amazing throughout this whole process and my love for her has grown exponentially, my mother and father have really pulled through, my in-laws are some of the most wonderful people I know, I have many friends and church members praying or showing support, and I have really grown in my faith. Even now, I am going to listen to John Piper's seminar, Suffering for the Sake of the Body.
A lot of people are contacting me and asking how I cope or what they can do to help. I really want to thank everyone and ask them not to worry. I often hear cancer patients complain about not having true friends or "finding out who your friends are." I rarely feel that way because I am surrounded by many good people and because I have a God that is bigger than cancer. I don't know His will, whether this ends like Job or John the Baptist, but both eventually died and both are now experiencing eternal joy.
I wanted to continue this post, but I'm starting to have some complications. Let me just end on this note:
I am able to remain positive, love my family and friends more because I have Him who is able to give me 100 percent of Himself, 100 percent of the time. No person or amount of people could fill that void, not even yourself. This has allowed me to cope with the present situation, have an eternal perspective, and love those around me much more thoroughly. If you attempt to rely only on others, you will be disappointed. Those closest to you will care too much and need their own support while those distant from you will not care enough.
Thank you to all who continue to pray, keep in touch, and otherwise provide support, especially my wife whose patience with me is beyond impressive.
Let us begin with the good news:
On Thursday, I received test results showing that my body is almost 100 percent donor cells. In terms of cancer and ultimate treatment progression, this is the best news that I could have received. I can still relapse or experience other issues that will later frustrate progress, but this is a positive milestone and hopefully the donor's cells are able to remain rooted and prevent a recurrence of the cancer. I praise God for this answer to prayer, and I thank those who are praying for me and supporting me.
So why am I in the hospital?
To reiterate, I am on a hefty dose of immunosuppressants, which keeps my immune system at bay while the donor's cells take over. (For those in the medical field, forgive the oversimplification.) As they took me off the immunosuppressants, the GVHD returned and things started to spiral downhill from there. My GVHD manifests itself in the skin and looks like a total body first-degree burn. It vacillates between severe itchiness, burning, and pain on contact. It is not imminently deadly, but it is debilitating. It can also lead to complications and morbidity; hence the need to get rid of it via steroids. The steroids then suppress my immune system, which led to a nasty infection known as BK hemorrhagic cystitis.
Quick aside: When I was in the military, we used to have frequent STD briefings to warn service members of the dangers of sleeping around. Based upon my recollections of those briefings and a quick internet search, having BK hemorrhagic cystitis can range from being an asymptomatic carrier of chlamydia to experiencing the full range of symptoms constantly, even while not using the facilities. I am more in the latter category. To make matters worse, the treatment can take weeks to months before things clear. I am on day seven without improvement. Narcotics will dull the pain for periods, but not long enough. Anyhow, that is all I am going to say for the BK virus, which began on my birthday.
The ultimate reason for hospitalization was that I also contracted citomegalovirus (CMV). Again, this does have a morbidity rate, but for now it is nowhere near deadly. Instead, I get more nasty side effects with the worst being that my joints lock, and I sometimes experience a charlie horse that runs throughout my body. Coupled with the steroids that also cause joint pain, there are times where I just lie in bed and cannot move my hands or feet because they are completely immobile. Usually this only lasts for 10-20 minutes at a time, but this evening I had a bad spell lasting nearly an hour.
Because of all this and insomnia from the steroids, I cannot seem to sleep for longer than 30 minutes or an hour. There are other side effects, but everything really pales in comparison to the above. Although it feels as though my body is physically dying, I am told that all of this is superficial.
Bottom line: I am in the hospital for closer monitoring, and a new attack plan to fight against the GVHD recurrence. Once the GVHD is under control, the oncologists have a plan B and will begin to again wean me off the steroids. This kind of a bump is not at all uncommon for my type of transplant; however, some people do stay on the steroids for years until they are able to begin a normal life again. In my situation, because the donor's cells took root so quickly, the oncologists think that my GVHD and symptoms were more acute. Like a blazing fire, it will burn hot, fast, and appear devastating; however, it should die out and not become a chronic, slow burn lasting years. I pray this is the case.
In the meantime, narcotics allow periods of relief, the docs and nurses at the VA are doing an exceptional job, my wife is amazing throughout this whole process and my love for her has grown exponentially, my mother and father have really pulled through, my in-laws are some of the most wonderful people I know, I have many friends and church members praying or showing support, and I have really grown in my faith. Even now, I am going to listen to John Piper's seminar, Suffering for the Sake of the Body.
A lot of people are contacting me and asking how I cope or what they can do to help. I really want to thank everyone and ask them not to worry. I often hear cancer patients complain about not having true friends or "finding out who your friends are." I rarely feel that way because I am surrounded by many good people and because I have a God that is bigger than cancer. I don't know His will, whether this ends like Job or John the Baptist, but both eventually died and both are now experiencing eternal joy.
I wanted to continue this post, but I'm starting to have some complications. Let me just end on this note:
I am able to remain positive, love my family and friends more because I have Him who is able to give me 100 percent of Himself, 100 percent of the time. No person or amount of people could fill that void, not even yourself. This has allowed me to cope with the present situation, have an eternal perspective, and love those around me much more thoroughly. If you attempt to rely only on others, you will be disappointed. Those closest to you will care too much and need their own support while those distant from you will not care enough.
Thank you to all who continue to pray, keep in touch, and otherwise provide support, especially my wife whose patience with me is beyond impressive.
Tuesday, June 14, 2016
Survived a Trip to Costco
Costco is one of my most hated stores. You combine relatively cheap prices, oversized carts and goods, cramped spaces, and free samples. The result is that people lose their minds and compassion once they enter the store.
Hyped up on steroids, experiencing severe roid rage and agitation, I decided to stop by Costco and stock up while my mother is visiting. (I cancelled my membership long ago.) Although I completely lost my faith in humanity, I somehow managed to survive the trip without any altercation. This is impressive considering I went through the full range of steroid emotions during the trip.
I arrived amped up and ready to shop. Filled with energy I charged through the store, trying to grab the heaviest items before I crashed. Unfortunately my attempts to get in and out quickly were thwarted by pretty much every Costco-type customer: the sample ninja; the indecisive, two-cart vending machine owner who blocks entire aisles; the large family that decides to group together, each member having their own cart; the children who ram their carts into your shins (does this only happen to me?); people aimlessly wandering while talking on their cell phones; that guy who tries to put a bulky kayak on his cart and then shop for food; and the remainder displaying a mob mentality, dashing throughout the store like a zombie apocalypse is imminent.
Towards the end, I had completely crashed off the steroid high, but the rage was at its peak. I do not know how I looked to other people, but I am now 169 pounds (I started treatment at 194), almost no muscle, pale and red with what looks like psoriasis from the GVHD, and I was definitely showing my irritation. I was probably so emo looking that I could play Darth Vader in the new Star Wars movies.
I won't compare conquering Costco with conquering cancer, but if the steroids didn't elevate my blood sugar, I definitely deserved a cookie. Instead, I had a Costco hotdog and discovered that I can no longer taste hotdogs.
Hyped up on steroids, experiencing severe roid rage and agitation, I decided to stop by Costco and stock up while my mother is visiting. (I cancelled my membership long ago.) Although I completely lost my faith in humanity, I somehow managed to survive the trip without any altercation. This is impressive considering I went through the full range of steroid emotions during the trip.
I arrived amped up and ready to shop. Filled with energy I charged through the store, trying to grab the heaviest items before I crashed. Unfortunately my attempts to get in and out quickly were thwarted by pretty much every Costco-type customer: the sample ninja; the indecisive, two-cart vending machine owner who blocks entire aisles; the large family that decides to group together, each member having their own cart; the children who ram their carts into your shins (does this only happen to me?); people aimlessly wandering while talking on their cell phones; that guy who tries to put a bulky kayak on his cart and then shop for food; and the remainder displaying a mob mentality, dashing throughout the store like a zombie apocalypse is imminent.
Towards the end, I had completely crashed off the steroid high, but the rage was at its peak. I do not know how I looked to other people, but I am now 169 pounds (I started treatment at 194), almost no muscle, pale and red with what looks like psoriasis from the GVHD, and I was definitely showing my irritation. I was probably so emo looking that I could play Darth Vader in the new Star Wars movies.
I won't compare conquering Costco with conquering cancer, but if the steroids didn't elevate my blood sugar, I definitely deserved a cookie. Instead, I had a Costco hotdog and discovered that I can no longer taste hotdogs.
Joni Eareckson Tada
"The girl who became emotionally distraught, and wavered at
each new set of circumstances is now grown up, a woman who has learned to rely
on God's sovereignty" Joni Eareckson Tada
Joni Eareckson Tada became a quadriplegic at an early age. She then went on to
become an angry, depressed, and suicidal young adult. Fortunately, God revealed
to her that He is bigger than any earthly tribulation. Although still in pain,
she has more joy in her life than most people I've known. Stories such as hers
really serve as an inspiration and a reminder that we can dwell on the negative
aspects of the present, or we can come to a knowledge that God is sovereign
overall.
Today was the first day that I was actually scared. Prior to the treatment, I
had thought of two outcomes: I either pass earlier than expected, or I beat
cancer. With GVHD and a constant stream of steroids, I am now presented with a
third option: To live in a very disabled state. Of course it is too early to
tell; but if my GVHD cannot be controlled, I will need to remain on a heavy
does of prednisone and tacrolimus. Those two steroids have harmful side effects
which require dozens of other essential drugs to protect ones body. I have so
many random, sporadic, and acute reactions; worse yet, who knows which drug is
the culprit. The cure could easily become debilitating, and that terrified me.
After I arrived home today, I listened to some sermons from John Piper at
desiringgod.org. For those who are suffering, depressed, or just need to be
reminded of the joy one can find in God, Piper's Desiring God seminar is very
inspirational. I do not know how this recovery will continue, but I do know
that God is greater than all of this. Whatever His plan, I am learning to find
my joy in Him. On the one hand, I do pray for relief and healing; on the other
hand, I thank God regularly for my afflictions which draw me closer to Him. It
is a paradox that I never understood until being diagnosed with cancer.
Monday, June 13, 2016
Rough Day
Today was one of those days where everything that can go wrong does go wrong. I pray that this is just a bump in the road, but for the time being, I took a major step back in my progression.
Because of the return of my GVHD, we are starting the steroid process over. That means that we discontinue the taper and return to the full dose. Also, the doctors are uncertain about the exact cause of my GVHD and other side effects that may or may not be correlated. This means additional tests, appointments daily, and regular evening appointments. Just when you want rest the most, cancer deprives you of much needed respite.
As it stands, I have not slept more than three or four hour blocks at a time. I am told the steroids are largely to blame, and I was really looking forward to getting off the medication as soon as possible.
Hopefully this setback will only be minor and in one month, I can look back at this as nothing more than a memory. As for now, I will strive to be thankful for every moment that I am not at the hospital or some other appointment.
Because of the return of my GVHD, we are starting the steroid process over. That means that we discontinue the taper and return to the full dose. Also, the doctors are uncertain about the exact cause of my GVHD and other side effects that may or may not be correlated. This means additional tests, appointments daily, and regular evening appointments. Just when you want rest the most, cancer deprives you of much needed respite.
As it stands, I have not slept more than three or four hour blocks at a time. I am told the steroids are largely to blame, and I was really looking forward to getting off the medication as soon as possible.
Hopefully this setback will only be minor and in one month, I can look back at this as nothing more than a memory. As for now, I will strive to be thankful for every moment that I am not at the hospital or some other appointment.
Sunday, June 12, 2016
The steroid taper finally took its toll yesterday, and I had a minor resurgence of my GVHD, which culminated in a total body rash and some other fun. Although saddened by the minor setback, for now the plan is to remain at the level of steroids I'm taking and hope that everything stays under control. The worst case scenario will be to resume the full dose of the steroids and try the taper at a later date.
As much as I hated to agree with the doctor and swallow the pill, I am hoping for a break in the overall malaise. I have been having a very rough few days.
As much as I hated to agree with the doctor and swallow the pill, I am hoping for a break in the overall malaise. I have been having a very rough few days.
Wednesday, June 8, 2016
Progression and Setbacks
I continue to be amazed at the horrorshow that is these steroids. Although I am progressing as they wean me off, the side effects from tapering are a major mental and physical blow. I go through periods of sudden energy, followed by complete lethargy; I get irritated easily; my hands shake uncontrollably to the point that I can barely type or write (I have spilled what I was eating several times); I wake up with severe joint pain; and a whole host of other issues that I would rather not discuss. All in all, I am coping and I understand that this is a necessary step towards recovery. I just have to push through this and know that each day I take less and less of the medication is another victory.
Eating has become even more of a chore than ever. The steroids also affect how my body absorbs different nutrients. Because it elevates potassium, I was just put on a low potassium diet. I had no idea the dramatic the effect would have. So much of the healthy fruits, vegetables, meats, and other things that I were eating had high amounts of potassium. There are very few healthy choices with no potassium, but I have managed to find some: onions, lettuce, plums, watermelon, apples, and green beans. The problem is that I don't taste any of them. What I do taste that I'm allowed to eat is pizza (no meat and light on the sauce), cheese, eggs (the only protein that I can really have), hotdogs (goes to show that there must not be much actual meat in hotdogs), and most any carb.
Again, all of this is temporary. As I move off the steroids, things may feel worse, but I am getting better. I just hope things don't get too much darker before the dawn.
On a final positive note, I am able to study and focus for over an hour each day. Also, I have been able to do the elliptical machine and some light calisthenics. I have to be careful because of the joint pain associated with the steroids, but this is a major improvement.
My energy is starting to fade rapidly so I'm going to cut this entry shorter than I had anticipated. Thank you to everyone who reads this and thank you for the constant encouragement through comments, emails, prayer, etc.
Eating has become even more of a chore than ever. The steroids also affect how my body absorbs different nutrients. Because it elevates potassium, I was just put on a low potassium diet. I had no idea the dramatic the effect would have. So much of the healthy fruits, vegetables, meats, and other things that I were eating had high amounts of potassium. There are very few healthy choices with no potassium, but I have managed to find some: onions, lettuce, plums, watermelon, apples, and green beans. The problem is that I don't taste any of them. What I do taste that I'm allowed to eat is pizza (no meat and light on the sauce), cheese, eggs (the only protein that I can really have), hotdogs (goes to show that there must not be much actual meat in hotdogs), and most any carb.
Again, all of this is temporary. As I move off the steroids, things may feel worse, but I am getting better. I just hope things don't get too much darker before the dawn.
On a final positive note, I am able to study and focus for over an hour each day. Also, I have been able to do the elliptical machine and some light calisthenics. I have to be careful because of the joint pain associated with the steroids, but this is a major improvement.
My energy is starting to fade rapidly so I'm going to cut this entry shorter than I had anticipated. Thank you to everyone who reads this and thank you for the constant encouragement through comments, emails, prayer, etc.
Friday, June 3, 2016
Amazing Progress
The amount of progress that I am making is truly miraculous; I am amazed at how good the Lord has been throughout this whole ordeal. My blood counts are returning much faster than normal, and some counts are even on par with a normal, healthy person. I was told that I would be on steroids for the better part of a year, but they are tapering me off this week. The taper is slow, but to already be getting weaned off of steroids is a big deal. Trust me when I say that these are not the kind of steroids that pump you up and give you energy. Instead, they completely zap my will to move, and I get the most bizarre side effects. Finally, they are already discussing giving me a day off from my doctor's visits this week.
I cannot reiterate how thankful I am for this progress. Just a little over two weeks ago, I was not planning on survival. Life can certainly go through some very dramatic changes over a very short period. Although the doctors and medicine can be seen as the instrument, Christ was the inspiration that ultimately pulled me this far. He really has effectuated a positive change throughout all of this, and I could never imagine returning to the state of mind that I possessed before cancer.
Interesting side effects or reactions:
1. When I was admitted, I was pumped so full of fluids that my body weight rose from 194 to 207 in a matter of 2 days. Then, when I was taken off the fluids, I drop 16 pounds in one day. Now, I am still getting rid of a lot of the retained fluids such that I can eat as much ice cream, pizza, or whatever and still lose 2 pounds a day. I'm at 173 pounds right now. Because of the fact that my body is like an accordion, people ask what I do about clothes. I really don't concern myself with fashion and just wear sweat pants and sweat shirts during this ordeal.
2. Being in the state of WA for the summer is perfect for this recovery. The sun can trigger my graft versus host disease (GVHD). For the next year, I will have to either avoid the sun, wear long clothing, or use copious amounts of sunscreen.
3. Steroids: Wow! These things are no joke. I take them twice a day to prevent a recurrence of GVHD. Almost one hour after taking the steroids, I feel like complete garbage. I end up lying in bed, watching tv, or playing a video game for the next two hours. These steroids do not pump you up or make you feel invincible by any means. Instead, I get agitated, severe headaches, lethargic, and my body temperature races between hot and cold. I cannot wait to get off this medication. The fact that I am being weaned off now is very uplifting.
4. Chemo brain: I have major issues focusing or studying for any longer than 45 minutes to an hour. Also, I don't retain much of the information. Doctors refer to this reaction as chemo brain. I have experienced this in the past; the only thing that I can do is continue to push myself mentally and hope for a speedy recovery.
5. Eating is a major chore. My taste buds are still recovering and my GI tract went through a very rough period. About a week ago I was able to start eating again, but there is no pleasure in it. Above I mentioned that certain foods do seem to have retained their taste: ice cream, pizza, yogurt, eggs, and some others. The problem is that the steroid put me at risk for diabetes and my blood sugar is elevated. Eating too much of the wrong stuff could have reactions later.
Today I went to the Korean market with my wife after my doctor's appointment. I am now staring at a plate of food that I normally would have been thrilled to eat. As it stands, I have barely eaten half, and I think I am going to call it.
While there are other interesting side effects that might not be the best topic for discussion, I am improving daily. The amount of progress that I have made is a blessing, and I am very optimistic for what each day will bring.
I cannot reiterate how thankful I am for this progress. Just a little over two weeks ago, I was not planning on survival. Life can certainly go through some very dramatic changes over a very short period. Although the doctors and medicine can be seen as the instrument, Christ was the inspiration that ultimately pulled me this far. He really has effectuated a positive change throughout all of this, and I could never imagine returning to the state of mind that I possessed before cancer.
Interesting side effects or reactions:
1. When I was admitted, I was pumped so full of fluids that my body weight rose from 194 to 207 in a matter of 2 days. Then, when I was taken off the fluids, I drop 16 pounds in one day. Now, I am still getting rid of a lot of the retained fluids such that I can eat as much ice cream, pizza, or whatever and still lose 2 pounds a day. I'm at 173 pounds right now. Because of the fact that my body is like an accordion, people ask what I do about clothes. I really don't concern myself with fashion and just wear sweat pants and sweat shirts during this ordeal.
2. Being in the state of WA for the summer is perfect for this recovery. The sun can trigger my graft versus host disease (GVHD). For the next year, I will have to either avoid the sun, wear long clothing, or use copious amounts of sunscreen.
3. Steroids: Wow! These things are no joke. I take them twice a day to prevent a recurrence of GVHD. Almost one hour after taking the steroids, I feel like complete garbage. I end up lying in bed, watching tv, or playing a video game for the next two hours. These steroids do not pump you up or make you feel invincible by any means. Instead, I get agitated, severe headaches, lethargic, and my body temperature races between hot and cold. I cannot wait to get off this medication. The fact that I am being weaned off now is very uplifting.
4. Chemo brain: I have major issues focusing or studying for any longer than 45 minutes to an hour. Also, I don't retain much of the information. Doctors refer to this reaction as chemo brain. I have experienced this in the past; the only thing that I can do is continue to push myself mentally and hope for a speedy recovery.
5. Eating is a major chore. My taste buds are still recovering and my GI tract went through a very rough period. About a week ago I was able to start eating again, but there is no pleasure in it. Above I mentioned that certain foods do seem to have retained their taste: ice cream, pizza, yogurt, eggs, and some others. The problem is that the steroid put me at risk for diabetes and my blood sugar is elevated. Eating too much of the wrong stuff could have reactions later.
Today I went to the Korean market with my wife after my doctor's appointment. I am now staring at a plate of food that I normally would have been thrilled to eat. As it stands, I have barely eaten half, and I think I am going to call it.
While there are other interesting side effects that might not be the best topic for discussion, I am improving daily. The amount of progress that I have made is a blessing, and I am very optimistic for what each day will bring.
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