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.
Monday, June 20, 2016
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.
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