BK Back Again

Recently I was told that the BK virus is back; however, the silver lining is that I am not experiencing any dire symptoms at this point. Thankfully, it was caught early and I began treatment with cidofovir today. But still, all this medication is pushing my counts down and comes with a lot of negative side effects.

To all those who have been contacting me recently, I'm sorry for the lack of response. It has been pretty hectic with appointments and treatment. Thankfully, my family visited for the holidays. It has been very uplifting having them here, especially during this difficult period.

GVHD and CMV still present

I was just told that my recent endoscopy confirmed three separate ulcers, CMV, and GVHD in my gut. This means that I go back up on the immunosuppressants, I continue ECP treatment (more appointments), and I will continue either foscarnet or ganciclovir. Most likely, I'll be at the VA every day for several hours, and I may have multiple appointments. I am so burned out at this point; this is the worst news that I could have received. Upon hearing the news over the phone I broke down.

At this point, I wish that God would either heal me or take me home. This treatment is destroying me and there seems to be no end in sight. Just when I thought there was a light at the end of the tunnel, it was only a gap before another dark and endless tunnel that I really do not have the energy to traverse. If it were not for God, I don't know what I would do at this point. I alone, certainly do not have the energy to continue. All I can do is pray for strength to proceed.

After His Own Heart. 1 Samuel 13:14

The following is a quote from Spurgeon while discussing David and the trials he endured:

There is a reason for your season of heaviness. Great soldiers are not made without war. Skillful sailors are not trained on the shore. It appears that if you are to become a great believer, you will be greatly tested....The uncut diamond has little brilliance, the unthreshed corn feeds no one, and the untried believer is of little use or beauty. There are great benefits to come from your trials and depression.

Endoscopy

Preliminary results from my endoscopy show ulcers in three separate areas of my stomach. The gastroenterologist took about 12 separate biopsies in order to detect GVHD or CMV. The ulcers do not concern me since they are a side effect of medication, particularly the foscarnet. The prayer is that there is no evidence of GVHD (which could require increasing the immunosuppressants that I have been trying to taper) or CMV (which would result in more foscarnet or ganciclovir). Right now, I am on a break from foscarnet while we await the results. I'm hoping this break is permanent and that I start to feel the good effects of being off the drug. Because I was on foscarnet for so long, my oncologist said that I will not likely see a noticeable difference for at least a week.

I had been feeling very anxious about the endoscopy, fearing the results would show either GVHD or CMV. I started to become frustrated and angry at the thought that I might have to deal with this for another month. (VA policy is that I wait a month in between endoscopies, and an endoscopy is necessary to detect both GVHD and CMV.) It seems like everything that can go wrong, has gone wrong. Moreover, I am tired and burned out from the constant appointments and endless treatment that seems to keep me in a static state where I am like some half-dead animal just trying to stay alive and cope with pain. Today was one of those days that brought all such negativity to light. Once again, what was supposed to be a day off, turned into a seven-hour appointment because of a lack of communication.

Put this into the perspective of someone who has now been going through this ordeal for years and does not know how much time he has left. I can think of better ways to spend my time. At first, I began studying, but not too far into the treatment, I started to hit my wall. Once I hit that wall, there is no point in trying to do anything that requires focus.

Actually, I just hit that wall I was about to describe.

Anyhow, I wanted to finish by stating that after meditating on the Word and reading some of Spurgeon, I suddenly felt a peace that I had not know in a long time. Despite the constant barrage of infections, bad news, losing everything, and feeling awful, I came across the following quote that really made me reflect on my present condition and put life into perspective:

The rest that the Holy Spirit gives under the worst conditions is wonderful. Martyrs have sung at the stake! They have rejoiced on the rack! Bonner's coal-hole at Fulham, England, where the martyrs were locked up, was a wretched place to spend a winter's night. Still the martyrs sang there, and it was the sweetest singing this side of heaven. C. H. Spurgeon.

I would love to write more, but I really have hit that wall. Plus it is late and I have another full day at the VA tomorrow.

Upcoming Edoscopy

Sorry to sound like a broken record, but until I stop the foscarnet, things will not likely improve. This Thursday, on Dec 8 at 10:00 I'll have my endoscopy which will reveal whether I still have CMV or gut GVHD. If I do still have CMV, I'll have to remain on foscarnet until the virus is gone.

I'm really praying that the virus is not there because I am not tolerating this foscarnet well at all. Moreover, I will have to wait another month before I can do another endoscopy confirming the existence of CMV. (The VA has a policy that I must wait one month in between endoscopies.) That means another month at Hotel California and another month of foscarnet.

The headaches are getting worse and my appetite is almost nonexistent at this point. If I don't force myself to eat, I could easily go the entire day without food. I'm convinced the medicine is the culprit because my symptoms are not constant. I wake up feeling relatively okay for a few hours and start a downward spiral as I begin to shove the poison in my body throughout the day. I try to take advantage of the mornings by exercising, spending time in the Word, and eating what I can. By the afternoon, I'm spent and usually in a vegetative state.

I've said it before, but this treatment is making me feel like I'm dying. The doctors say that we are making progress, but after more than 200 days from the transplant, they still cannot provide a clear direction on treatment nor can they provide an endgame.

The bottom line is that a lot is riding on the results of the endoscopy. It will affect my treatment and the time that I remain here in Seattle.

Short post

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.

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.

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.

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.

CMV Continues

It's been a rough few days while dealing with CMV. I have had it before, but because there were other infections thrown in the mix, I never realized how painful CMV was just by itself. Over the past few days I have been so weak that I have had trouble walking up stairs and opening jars or bottles.

Today and yesterday I spent more than half the day at the VA getting IV medicine. I have tomorrow off, but I still have to administer the medicine myself through a portable IV pump. I feel like an animal whose sole purpose is just to maintain its existence. I wake up, take a handful of pills, I then hook myself up to an IV for a couple of hours, then it's time for the lunch medicine, dinner medicine, another couple of hours of IV medicine, and some evening immunosuppressants. There are a precious few hours in the day where I feel somewhat normal and alert. For the remainder of the time, I am either exhausted, but unable to sleep either due to pain or side effects from all the medicine.

This week my biopsy results from the last endoscopy should reveal whether I still have GVHD in my gut. If not, or if it is minor, my oncologist is willing to continue with the prednisone taper. I am fervently praying that I can get off this medication as soon as possible. Although my faith remains strong, I am battling severe despair as I continue this game of hopping from one infection to another. Currently I am on 85 mg of prednisone, 5 mg of tacrolimus, and 1 mg of sirolimus per day. There is also a laundry list of other stuff, but those three are the most problematic.

Exhausted but Restless

It's just after midnight, and I'm thoroughly exhausted. Things were looking up for a minute, but I am definitely feeling the effects of the CMV virus tonight: my joints are on fire, my stomach feels like a balloon ready to burst, and now my nose will not stop bleeding thanks to low platelet counts and a ruptured blood vessel. Nevertheless, I have to wake up in six hours so that I can rush off to the VA for eight to ten hours. It's striking that I can go between having a full day off and feeling like I am well on the road to recovery only to be struck down in one day and again wondering in which direction I am progressing.

I have been reading several books recently in an effort to overcome chemo brain. One particular book is entitled Decision Making and the Will of God by Garry Friesen. I have been contemplating what God would have me do should I beat this disease (or should I become disabled). I really do see this chance as my last, and I want to ensure that I use my life wisely. Yet all these setbacks make it hard to finish such a book when you begin to think that the rest of your life might only be a year or so. Right now, I am still at a high risk of the cancer returning or an infection being the end of it all. Thankfully, this 500 page book is really only 200 pages of content so it shouldn't take much time finish. Insightful book, but it didn't need to be as long as it is.

I've also started A Tale of Two Cities, which I really dislike. I went through a literature phase long ago and read many of the classics until I came across A Tale of Two Cities (both Hemingway and Dickens quickly ended my literature phase). The problem is that I got too far into A Tale of Two Cities that I must know how it ends. And because I'm too stubborn, I must find out how it ends naturally; i.e., no looking it up on wiki or reading the synopsis. To make matters worse, it has been so long since I have read the book, I forgot the majority of the plot and have since started over. I bought the Kindle version for 99 cents.

Although cancer wastes a lot of time through appointments or fatigue, it reminds you that time is so precious. There are only a few hours in the day where I feel up to anything. During that time I either want to be physically active or studying something that I have always been curious about. Cancer has really killed my desire for binge-watching television or playing too much video games. Please do not take this as sanctimonious bragging; instead, I am noting that there are good things that can come from cancer or other prolonged periods of suffering.

Anyhow, my nose stopped bleeding, the pain meds have kicked in so my joints are calm, and I need to wake up in a few hours. It's time for bed, forgive any errors above because I'm not proofreading this.

CMV Back Again

CMV is back again. I'll start antibiotics tomorrow, but at least now there is an explanation for the sickness I started experiencing recently.

How am I doing?

For those who keep up with my blog, it's no secret that I loathe this question. The answer is that I honestly do not know how I am doing, but here is the state of things:

Physical updates are as follows:

1. I just received a full two days off from the VA. I pray that my appointments continue to become less and less. The more free time I have, the more time I can rest, relax, exercise, and eat healthy--all of which is very important for my physical recovery.

2. We started tapering my morning dose of prednisone. Unfortunately, I have just come from 90 mg to 85 mg. My oncologists are having a discussion about tapering me faster, and I pray this occurs. The medicine is a major obstacle to my physical recovery; it prevents solid sleep and muscle growth. Nevertheless, we have finally resumed the taper after a long pause.

3. Although I still cannot taste anything, I have been eating better.

4. My energy level is still very low, and I have periods where I can do nothing except lie in bed.

5. There are still random episodes of acute joint pain, stomach aches, headaches, and general malaise. Yet overall I have come down on some pain medication so I believe that is an improvement overall.

All in all, things are on the up, and I will do my best to ensure that I progress. Please keep praying that this trend continues; I would like to resume classes in January. Who knows what the future holds or how much time I have, but I am eager to use what time I have left.

Don't Waste Your Cancer

"What God permits, he permits for a reason. And that reason is his design. If God foresees molecular developments becoming cancer, he can stop it, or not. If he does not, he has a purpose. Since he is infinitely wise, it is right to call this purpose a design." John Piper: Don't Waste Your Cancer.

When I was first diagnosed with cancer in March 2014, I turned to God out of fear. At the time, I was in such poor condition that the doctors were telling my family to prepare for my death. Locked up in the ICU for nearly a month, I managed to survive. However, I was completely disabled for a months: I could not walk, I was blind, I could not eat, I was neutropenic (which leads to many awful infections), and each day was a fight just to remain alive. During that time, I listened to many sermons and prayed about my current and future state. I then underwent six additional months of strong chemotherapy. My goal was to recover and regain my former life. To paraphrase the former BP CEO Tony Hayward after the oil spill, I just wanted my life back. From God, I simply wanted fire insurance, meaning I did not want to go to hell and mortality was certainly on my mind. Nevertheless, once I began healing, I noticed that I was slowly putting God on the back burner while I focused on trying to rebuild and restore my physical life. There were some changes that took place, but most were superficial and not the fruit of a true believer.

"Cancer is designed to destroy the appetite for sin. Pride, greed, lust, hatred, unforgiveness, impatience, laziness, procrastination—all these are the adversaries that cancer is meant to attack." John Piper: Don't Waste Your Cancer.

After relapsing, the pain and suffering from this transplant has really allowed me to focus solely on Christ. The greater the pain, the more I reflect and meditate on His Word without other distractions. It has certainly been a privilege to experience such a transformation--a transformation that I pray remains.

More Infections

As an outpatient, I am being treated for two new infections that were discovered this past week. The antibiotics and immunosuppressants are really starting to have a cumulative impact on my blood counts such that platelets, red blood cells, and white blood cell counts are all dropping to uncomfortable levels. Nonetheless, God is good, and these new infections are less painful than the last. For the most part, I'm just very exhausted.

I think that I have resigned myself to the fact that this year will be a constant struggle. I'm not trying to be pessimistic, but I do notice that I'm having a rougher go of things than most other patients.

For someone who used to be physically strong and very self-reliant, this has been an absolute nightmare. However, it has really forced me to focus on what is important in life, and I continue to praise God for the changes that he has effectuated within me--even if it took two rounds of cancer.

Back in and back out

Almost as soon as I arrived home from being discharged, I was then admitted to the ER for a bloody nose. While a bloody nose might now be serious for an otherwise healthy person, my case was quite different. My nose had been bleeding for hours a day and for the past two weeks. Moreover my blood counts were low and there was little chance that the bleeding would stop on its own.

Once at the VA's ER, I went through the formal process of checking in, which includes a lot of formulaic questions that have nothing to do with your illness and are merely check-the-box psychological issues: e.g., do you feel safe at home, is someone stealing from you, how often do you drink or smoke, do you have access to violent weapons, etc. Once I passed admission, I was afforded the opportunity to sit in a room and bleed for 14 hours while nobody did anything. I was told no eating or drinking, they would not allow me to take the pain medication that I brought, and they weren't even going to let me take my cancer medicine. Basically, they had no idea what to do with me, the staff took no initiative to deal with the bleeding, and while they were supposed to call the Ear Nose and Throat specialist, they downplayed the situation such that he put me at the bottom of the priority list. This caused me to have to wait a total of 14 hours for the ENT. Again, during that time, with the exception of two individuals near the end of the shift, nobody did anything.

When the ENT did show up, he decided to pack my nose. This means that he shoved an already oversized sponge deep into my nostril. The sponge then expanded further and really pushed everything around in my face; it's quite uncomfortable. I underwent the procedure without any medication because the ER nurse didn't feel like asking for authorization. Thankfully my pain tolerance is high at this point, but some tylenol would have been nice. I wasn't asking for morphine or whatnot.

After the procedure, I was sent back to the Bone Marrow Transplant Unit (BMTU), which really acts more like a family and is very supportive. I have had my rough times and issues with the BMTU, but I've also developed a new appreciation for the unit after having spent time in the ER and ICU.

I'm starting to fade again so I'll work on wrapping up this post for now.

As bad as I felt things were handled at the Seattle VA ER, it reaffirmed my resolve to trust in the Lord  for support and never give up the fight. After two weeks in the MICU with C-Diff and everything else, I became very introspective and wanted to have a little pity parties where I focused on the fact that life in the present had become without hope and joy. After reading 2 Corinthians 4:7-18, I realized that though this present suffering is difficult, I will never be given more than I can handle. And while I continue to show my faith and bring glory to God, He is pleased, and I too can find joy in that. Moreover, I have a new appreciation for everything. Just being at home with my wife and free to sleep or read when I please is like a dream vacation.

Anyhow, I think I've used my energy for the day and it's time to sleep. I'll write more later.

Discharged

After two weeks of being in the hospital, I have once again been discharged. Physically weak and mentally exhausted, I am very happy to sleep in a real bed--and just five minutes from some good, uninterrupted sleep.

Thank God for Yeonsil who is taking care of me. I was so physically drained and comatose that I don't even remember how I just got home.

"On the Mend"

I was told today that I am back "on the mend," which is a phrase I hear often. As much as I hate getting the infections, at least I seem to be fighting them off. The short term goals are to be discharged by the end of this week, get the gut GVHD under control, and continue with the immunosuppressant taper. Once the drugs are issued at a more manageable rate, my immune system can kick in, which will serve as a major catalyst towards physical progression.

I may have mentioned this prior, but because of the situation I am in a completely different ward. Yes, I am fighting off the desire to go ballistic and rant incessantly, I am constantly biting my tongue as I try to remember that we all make mistakes, and I am again confronted with the disparity among personnel quality. Nevertheless, I am in a unique position to demonstrate my faith to people whom I never would have met before. It would be a severe waste of my cancer to sit here in anger, complaining and yelling at the staff like some other belligerent patients that I hear throughout the night. That does not help the patient, the nurse, and it certainly does not make others comfortable.

At any rate, I need to get out of here and fast. For another few weeks, my days will likely be long with multiple appointments; however, sleeping at home is much more preferable than "sleeping" at the hospital.

Inpatient Again

I've felt better so I'm going to keep this update short and sweet:

I'm back in the hospital with the following issues: GVHD in my upper and lower gut, C-Diff (this is a truly awful disease and my second time having it), CMV throughout my stomach, a very large ulcer, parainfluenza (nothing serious but we have to ensure that it does not develop into pneumonia), and a small remnant of the BK virus still remains.

Basically, my stomach has seen better days, but we are hopeful that nothing in isolation is life threatening and can be treated separately with antibiotics. The pain is intense, but I am thankful to be alive and will continue to stay strong in my faith while praying for physical healing.

Results from Last Week

The initial results from last week's tests show that I have a very large ulcer in my stomach. Whether this is related to GVHD or not will be revealed in the biopsies, which should come out at the end of this week or the following week. The bad news is that the ulcer is very large and covers a good portion of my stomach. The good news is that the ulcer has not yet begun to bleed and my team already has a plan to get things under control. There is no discussion of surgery or anything else invasive at this point.

Now that I know the cause of my stomach pain, I am making some dramatic changes to my diet. My wife has been good about cooking some very bland food and researching home remedies that might help. She already has a plan that we've put into practice, and I can already feel some results.

Today I was really hoping that I could begin attending church again. There's a local pastor who has been very good about keeping in touch and providing support. Unfortunately, I was up all night from the stomach pain and continue to battle pain management. The doctors assure me that my pain medication will not exacerbate the ulcer; however, it just seems to make sense that the more medications I can reduce, the better off I will be in the long run.

So let's recap here:
It has been 125 days since my transplant. I still have a small remnant of the BK virus plus two other viral infections, which have left me very fatigued and in a state of general malaise. I now have this ulcer, which we are praying is just that--an ulcer and not gut GVHD or worse. Physically, I feel very disabled and can only walk a mile on a good day. Meanwhile my muscle has almost completely atrophied, my weight is now close to the 150s (down from the 190s), and my body shape is like some amorphous blob. My appetite is gone, I hate meal times, and I can't taste food. After eating I usually need an hour in bed for my stomach to calm down. My days are still busy, but I do seem to get one full day off per week. As for good news, the cancer is still in remission and my body appears to be accepting the donor's cells. Also, I am very thankful for all the treatment which has kept me alive this long and continues to show promise.

I'm often asked how I'm doing--a question that I really don't know how to answer. I certainly wasn't expecting this many setbacks nor was I expecting this much physical pain. Instead, I was expecting to be further along than I am now, and I was hoping to be on a more defined road towards recovery. Yet, God has grown me in ways that I could never imagine. I wish that I could say He were done so that my family could get on with their lives, but His plan is not mine and He knows what is best. I have to continue to stay strong in my faith and push myself when I can.

More setbacks

This week I will be undergoing a series of tests to determine if my GVHD has returned. Because I am exhibiting symptoms of gut GVHD, I'll undergo an endoscopy this Friday and other procedures as well. It's highly possible that this is all related to an infection that I've contracted, but until confirmation we are going to halt the immunosuppressant taper.

Off the Evening Dose of Prednisone

To start with some good news, I am officially off my evening dose of Prednisone, the most toxic drug in my arsenal of poisons that keeps the GVHD away. This is a milestone that I have been awaiting for some time. The next step is to taper off the morning dose, which is currently set at 100 mg. I should be at 50 mg by the end of the month. That is still high and not where I want to be, but it's much better than before.

Because I have been on Prednisone for so long and at such a high dose, it will take months before many of the side effects are gone. I have lost nearly 50 pounds, but I look as though I gained 50 (all in my face and gut). My muscle is nonexistent, I have severe joint pain due to the taper, there's an odd hormonal imbalance that resembles pregnancy and menopause, and other things I'd rather not discuss. I look in the mirror and do not recognize the person I see--very Kafkaesque. I've probably used this word in the past, but my memory is still recovering and I really don't feel like reading old posts to see if I'm repeating myself.

Speaking of transformations/transmutations, I can tell that others notice the difference immediately. Anyone who knew me from the past instantly remarks that I'm the only cancer patient they know who has gained weight--an assumption based on my bobblehead appearance. I don't mind the comments; cosmetics are the least of my concern and it's all in jest. However, I do notice how differently I am treated by strangers based on my appearance.

Recently, I caught a few infections and my joint pain has increased sharply. As a result, not only does my body look incongruous, but I walk very slowly and with a noticeable limp. The glares and looks I get from others are so appalling you'd think I was a leper. I ventured into Whole Foods today after a appointment in order to get a cake for my wife's birthday. I walked through the store and noticed that I was getting some very intense stares. Even my wife noticed the fowl and disgusting gapes from others and let me wait in the car rather than remain on display.

My initial reaction was anger and misanthropy, but after some reflection I feel fortunate and grateful. Although my appearance is likely to revert back to normalcy in several months, others must live with a disfigurement throughout their lifetime. Obviously, I am aware that they are the victim of discrimination, but I never realized how ubiquitous it was--you can't even walk down the street without some teenager, middle-aged, or elderly person looking at you like they would a zoo animal.

I want this and other experiences of mine to be an indelible memory so that whatever life I have left, I never make someone feel like I have felt during this treatment. I loathe going out in public in my current state, and it's not because of vanity or an isolated incident; it is just plain awkward and disturbing. When my blood counts are low, I wear a mask and gloves--people will usually clear a sizable radius fearing that I'm infected with something. Then there's the usual "ewww gross" stares that I really thought were in my head until recently. This has been very eye-opening, and my heart truly goes out to those who have a life-long disfigurement.

In other news, I mentioned that I contracted some new infections. Life is going to continue like this for another few months I'm afraid. Yes, I have tapered off the evening dose of Prednisone. But, that only amounts to about 30 percent of the total immunosuppressants that I am taking. I still have a long ways to go before I can even begin to feel normal and be clear of infections. It is also going to be awhile before I get to enjoy the sun which can trigger my skin GVHD. The silver lining there is that I'm probably the only person in Seattle looking forward to the rain. Wearing hoodies and sweatpants throughout the heat has not been fun.

Actually, If I weren't in Seattle, I'd think that peoples' stares might have been because of the way I was dressed. However, throughout the West Coast, there's an element of sartorial splendor that rivals modern art. Out here in the Wild West, you see the result of children whose parents never taught them how to dress. Portland takes the lead on this, but Seattle and the Bay Area aren't far behind.

Finally, I would like to present a link that describes how I feel as I met my first milestone while still being GVHD free:

http://www.desiringgod.org/articles/lord-keep-me-desperate

In keeping with the spirit of indelible memories, I never want to forget how desperate for God I have been throughout this ordeal. God willing, I continue to progress physically; but I would pray for a halt should I ever regress spiritually. Even now, with only a bit of healing, I notice the pull to become absorbed in former temptations. I wish it didn't take cancer twice to open my eyes, but it did. There is no third chance, and I don't intend to test that notion. Instead, I pray that I remain steadfast, like the Psalmist: "Before I was afflicted I went astray, but now I keep your word." Psalm 119:67.

Long Overdue Update

The following is an excerpt from Spurgeon on Genesis 28:16: Some of you are in deep affliction. Your difficulties are so great that you do not know where things will end and you are deeply depressed. But remember, "Surely the Lord is in this place."

It has been awhile since my last update. I have been frustrated with my progress, and I notice that when I relay my frustrations, it irritates or disappoints others who are reading and following. Recently, I caught another infection which led to an increase in treatment, more visits to the hospital, and a general step back in terms of my physical condition. I got the call the same day I was supposed to sit for an exam. It seems that every time I try to move forward in some small way with my life, the treatment has something else in store.

The infection is not serious; it just means more time at the hospital, my appetite has decreased, the joint pain has increased, and my energy levels dropped such that I would give anything for an uninterrupted week in bed without any responsibilities. Nevertheless, the show must go on and there is something to be said for maintaining a lifestyle beyond treatment.

During this period, I cope by making a list of things to do. I keep up with paperwork (a never ending saga when dealing with the government or healthcare); I continue my studies; I exercise as I am able, which means pushing through the joint pain and avoiding heavy lifting for the moment; I read the Good Book or listen to sermons for comfort, I try to follow politics and business, and I keep track of upcoming milestones. For example, it has now been over 100 days since my transplant.

Not too long ago, the 100 day milestone was a benchmark of sorts. It was the sole indicator as to whether a patient would likely pull through or not. With the addition of new treatment and medicine, this milestone is a bit of an anachronism. Now, if a patient is still struggling with GVHD, there are other methods of combating GVHD. I am currently undergoing several of those methods which appear to be efficacious for now.

The next milestone that I'm eager to hit is September 3. On that day, I will have completely tapered off my evening dose of Prednisone, the nastiest drug in my arsenal of necessary evils. From then on, I will be at 100 mg of Prednisone in the morning and the taper for that will commence shortly thereafter. Getting off Prednisone will be a major catalyst in my return to physical and hormonal normalcy. I also continue to reduce my narcotics intake at a faster than recommended pace. I believe in the necessity of these drugs, but I also believe that getting off the pharmaceuticals is a must.

On a final note, people ask what I eat. I don't go on any crash diets such as the goshen diet, drinking your own urine (not joking about that at all), or relying on some snake oil that so and so is pushing or a panacea that Big Pharma is hiding. Instead, here is a typical meal which consists of water, kefir, mixed greens, a whole avocado, carrots, broccoli, olive oil as dressing, cheese and croutons for taste, a tuna wrap, and some fruit. Now, to dispense with the fact that I'm a perfect angel, I'll admit that I load up on some ice cream or a shake if my weight starts to drop too much.


I have tried Blue Apron based on the suggestion of a good friend. I think there's a market for the product, and I was very pleased with the taste. The problem is that prep time is long and we are often away from the house during delivery. If I take a turn for the worst and need to be hospitalized, it isn't easy to freeze the order. I think Blue Apron and other such products would be a viable choice for patients with set schedules.

For now, I will continue pushing forward and using most of my free time to prepare for this final exam that I hope to take ASAP. Despite the concerns I have over my situation, I am very thankful for my supportive wife, family, network, and a God who is present with me always and greater than cancer or death. Also, Kudos to U.C. Berkeley for being so supportive of this situation. I received a very gracious email from them today. In fact, I have received nothing but good news and support from the school. Go Bears!

Experiencing the Grind

It has been awhile since my last update, and I am pleased to say that things are progressing, albeit slowly. Nevertheless, there is still a long ways to go and things could change instantly.

The hardest part about life now is the schedule. I wake up at 6:30 am, I'm at the hospital between 7 and 8, I finish the morning appointment between 1 and 2, I get 4-5 hours of free time, and I'm back in the evening for more medication that runs until 10 or 11 pm. Also, several times per week there is an afternoon appointment that sucks up my free time. With my current state, I'm finding it very difficult to keep up and not get burned out.

Through this schedule, I also need to find time to study for one remaining exam and play catchup on life. If I continue to progress towards recovery, I should see my things lighten a bit in September, and I may get some days off by October or November. Since this whole ordeal began in March, I have had only a handful of days off from the hospital.

Also, I have to squeeze an hour of exercise into my day or I get extremely weak because of the steroids. The doctors are very concerned about the amount of muscle atrophy that I have experienced, especially in my legs and chest. It will take several months after I am fully off the steroids before I am able to physically recover and start making some gains again.

In short, I am very burned out and frustrated; yet I have to remember that compared to a month ago, life has improved. It is hard not knowing whether things will continue to improve or what will become of the future, but I'm just going to do the best I can and trust in God for the remainder.

2 Corinthians 4:16-18

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing us for an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For things that are seen are transient, but things that are unseen are eternal.

Update

I have been meaning to post an entry, but my time has been very limited recently. I still have two or three appointments per day and each appointment is a hurry up and wait game.

Anyhow, the good news is that my GVHD is now under control and the doctors will again begin the process of tapering me off the immunosuppressants. The bad news is that even if things go well, it will take until mid-September before I am off just one third of the dose of my steroids. Again, these steroids are very harmful and they cause severe muscle loss (I can't even do a pushup or walk a flight of stairs right now), weight retention (my face and belly are bloated despite losing nearly 40 pounds), vascular necrosis, joint pain, and a host of other issues. I will continue to be disabled for quite some time, and I will continue to have multiple appointments per day until sometime around October--and this assumes everything goes well.

I am trying not to be depressed about this news, but it is difficult. On the one hand, I just want to get up and run away from this place. I am tired of constantly being surrounded by someone who is busy reading my computer screen or waking me up to ask me what my plans are or having to wake up and watch my nurse because they are about to give me the wrong medication or the wrong dosing of a certain medication. Recent mistakes have not only wasted my time, but they have been detrimental to my health.

On the other hand, I have to remember that this will pass, and I should be very thankful to have VA coverage. With private insurance, I would not be afforded many of the opportunities that I currently have. For all their faults, the VA has done a pretty good job to ensure that I am taken care of. Things could always be better, but they could also be much worse. Second, I have to remember where I came from one month ago. Although I still have the BK virus and the CMV virus (those won't leave until I am off some of the immunosuppressants), the symptoms have subsided, and I am able to sleep much more than before. With the increased amount of sleep, I am slowly recovering my mental capacity. I hope to start reading and studying again next week.

Going forward we just have to pray that my GVHD does not return and that I am able to get off the steroids in a timely manner.

Hanging in There

I'm still hanging in there. I have been spending my days either awake and managing the pain or sleeping. Basically, if I'm well enough to fall asleep, I just sleep. Although I still have symptoms from the BK virus, I am able to sleep in three or four hour blocks. Each day seems to blend together, and I don't know whether I'm progressing towards recovery or progressing in the other direction. The uncertainty of the situation is hard to grasp, and as a Christian I am battling with unbelief in terms of physical healing.

I read one of Spurgeon's sermons on unbelief, which is number 3 in his complete works (available for $0.99 on amazon for Kindle). Prior to this experience, I did not realize how rampant unbelief was, nor did I realize how it constantly manifests itself in our lives. Regardless of whether I pull through, this experience has undoubtedly changed me for the better and improved my relationship with God more than a hundred years of healthy living ever could have. Going forward, the desires I have for life and the things that I find joy in have changed such that I'm barely recognizable. I pray that if I recover I do not relapse in terms of cancer, but also that I do not relapse into my former state.

It's hard to imagine where I'll be even in one month, but I can promise you that I am not anxious about the situation. Yes, I'm human and I struggle mentally with some issues, but most of the staff at the hospital is impressed with how I am coping. Severe GVHD is very difficult for patients to manage because the pain is intense, the setback to recovery can be irrevocable, and the GVHD itself can be lethal.

So we keep praying and monitoring the situation. I'll bear in mind that "for me to live is Christ and to die is gain." Philippians 1:21. If life does continue, it will never be the same.

ECP and Pokemon Go

I started ECP treatment today. Obviously it's far too early to tell if things are working; but hopefully after a few weeks, we will notice some improvements. I have two appointments per week, which means that we will start to get the afternoons free.

Also, I downloaded Pokemon Go so that if things take a turn for the worst, I can blame Pokemon Go for the GVHD like others are blaming it for getting hit by a car, falling off a cliff, or wandering into the wrong neighborhood and getting stabbed.

False Alarm Confirmed

I am now about to go to bed after being discharged, but it was confirmed that I was called in for a false alarm. I was told that the blood culture was contaminated, and the doctor who called should have recognized the false positive for numerous reasons.

Tonight I read Philippians 1 in a whole new light. Paul notes that it is good and proper to suffer for Christ in that the gospel was made known to the unbeliever while those who believe were strengthened in their faith. v. 12-14. Meanwhile, it is okay to want to go home and see an end to the suffering, but since we must sometimes remain, it is imperative that we remain with in Christ and stay strong in our faith. v. 23-24. Finally, we must remember that as Christians, we will be called to suffer. v. 29.

I realized that at this point, I am no longer a student; there is no law school or upcoming job for which to prepare. Perhaps that will change some day. Yet as of now, my only real job is to remain strong in Christ and see this through. That also entails being a good husband--this is not easy on Yeonsil either. As much as I may suffer, I know that she loves me and she suffers right along side me. Not too long ago, she left our hotel thinking that she might return alone as a widow. She remained by my side afraid to leave for the duration of this stay. She is a great wife, and I pray that circumstances change for my sake and hers as well.

PS

I forgot to note that I do have two infections that were recently discovered: CMV is back and another called citrobacter freundii. Meanwhile, the BK virus still lingers, my skin GVHD is still not responding to the steroid treatment, and I am set to begin ECP treatment tomorrow.

The Seattle Cancer Care Alliance refused to do ECP treatment if I was inpatient with the VA. So I am being moved to outpatient. However, because I'm at the hospital from 7:00 to 21:00 anyhow, there's very little difference and I view the transfer as nominal--especially when I get called at midnight to come in for what turned out to be a contaminated sample. (Yes, that is correct, I was called in and told that I was near death most likely because of a contaminated sample. Yeonsil was in tears and thought she had already lost her husband; she's still having a hard time coping with what is going on and what to expect of the situation.)

Surrendering to God

Today has been another day like yesterday: every time I close my eyes, I'm woken up within ten minutes for something inconsequential. After having missed lunch because of another staff member's error, I am starting to become very angry and bitter. Mentally, I have checked out on what's going on around me, and I have completely stopped listening to the staff here. Because of the constant interruptions and the game of hurry-up-and-wait, I am very close to slipping into despair, anger, and bitterness.

Last year while going through cancer the first time, I was given a book by Evan Handler, an actor who also suffered from AML and underwent an allogenic stem cell transplant. In his book, he attributes anger, rage, and a hatred of God as that which kept him going and the reason for his survival. While that may be, others would be quick to counter Mr. Handler and note that their positive attitude or belief in themselves or faith in medicine is what saved them. Regardless, the graveyard is full of people who survived cancer only to die later. The graveyard is also full of those who had a positive outlook and those who had a negative outlook during their fight with cancer. I can allow myself to wallow in anguish and begin to hate others, or I can use the cancer as a testimony of the fact that I do not suffer like those without hope.

Either way I'm going to have to go through this. I can do so without Christ and suffer without hope, or I can remember that I have a hope that extends beyond cancer.

In his sermon Free Will--a Slave, Spurgeon states: "Do we not find times, even now, when to will is not present with us." While Spurgeon had a different meaning, I latched onto the word "will" and realized that I have lost the will to fight this battle. I do not mean that I have permanently given up; instead, I am exhausted and do not have the energy to continue. However, this is not the first time I have been in such a state during my struggle with cancer. No matter how strong someone is, if they have to battle something like cancer for over two years, there will be periods where they simply do not have the strength or will to continue. It is during those times that I have faced a fork in the road: I can either become angry and give up or I can relax and rely on God to carry me through.

John Piper speaks a bit on the above: http://www.desiringgod.org/messages/battling-the-unbelief-of-bitterness. He notes that such trials can be seen as faith being refined. The Christian can either become angry and spiteful at God or he can find solace in the fact that he has such faith to begin with.

Again, refraining from the overall question of why bad things happen to good people, the fact is that we live in a fallen world that is full of pain and suffering. Right now, I have a choice about how I approach the situation. I need to fight my unbelief and anger, and surrender the situation to God. As of now, I am too exhausted and I confess that I'm quickly becoming very bitter at the situation. I'm going to spend some time in prayer and stop worrying about the outcome or trying to continue the fight for now.

Frustration and Apathy

I've pretty much lost faith in the VA at this point. The mistakes from the staff are really starting to add up, the doctors are just grabbing a handful of darts and hoping that one will hit the bulls eye with my treatment, the urgent call last night is still unaccounted for, it takes an average of one hour for my nurse to get me pain medications or respond to my requests for anything (I just brought my own medication this time). On the other hand, there's always some nurse here checking my vitals every three hours instead of every four, listening to my lungs every two or three hours, training some new person from a different unit, taking my blood sugar despite the fact that it hasn't changed in the past week, or trying to make small talk by asking if I'm enjoying Seattle and seeing the sights.

It has taken me over an hour to write this entry because of interruptions. Three times someone stopped by to ask if I had filled a urine sample (this is the second one today), two sets of vitals, blood sugar checked twice, two different people listened to my lungs, a pharmacist came by to discuss some new medicine, some will open my computer screen and ask me what I am writing, another person came to try to get me to speak with a psychiatrist...and in the meantime, I asked for some pain medication an hour ago for my joints.

Although I've physically checked in to Hotel California, mentally I have checked out. I'm just putting my faith in God at this point. I need to regain a positive attitude and be a better witness. However, I'm very frustrated with the situation, and I could really use some privacy. I need some alone time to mentally regroup, but that's just not going to happen for a very, very long time.

Wrong Patient?

0:41. After reporting to the ER, I decided to call the Bone Marrow Transplant Unit (BMTU) because they are more familiar with my situation. The BMTU is aware of the "possible infection" but they believe the ER either called the wrong patient or they are reacting to a false reading of my blood. Of course the BMTU could be wrong and the ER could be correct. However, it's frustrating that one party practically declared my imminent death such that Yeonsil was in tears thinking she had already lost her husband while the other party is in the extreme opposite corner saying that they have the wrong patient.

Meanwhile it is now approaching 1 am and it doesn't look like I'll be getting much rest. Moreover, even if I was admitted by accident, I am stuck here for 72 hours as a matter of policy. I don't know whether to be preparing for my end or whether I should be upset with the lack competence. Regardless, I'm just going to refrain from anxiety, trust in the Lord, and try to close my eyes and rest whenever possible.

Please Pray: Another Infection

It is now nearing midnight, and I received a call that this morning's blood cultures just revealed the presence of a serious infection. The attending doctor has requested that I be admitted to the ER. Yeonsil and I are on our way and wondering about the severity of the situation. This is why the GVHD is so serious; I have traded cancer for a series of infections that are either painful or deadly or both.

To those who are in prayer, please continue to pray. Like Paul in Philippians 1, I too am at the point where I just want to go home. But rather than be angry that I am made to suffer through this, I am thankful that I do not suffer without hope. One way or another, we will make it through this because of God and not in spite of Him.

It's the Little Things that Add Up

It is now 21:30 and the taxi that was supposed to take me back to my hotel just drove off without me. That was the last taxi, and I now have to wait for my wife to pick me up. I missed that taxi because of a staff member's mistake at the VA. I am going to skip the story because my intent is not to complain. Instead, I am just trying to communicate the fact that something constantly seems to go wrong with these appointments that are scheduled and there is very little down time in between. The schedule would be difficult if I were healthy; but as someone who is sick, it is really taking its toll on both me and my wife.

ECP Treatment Preparation

06:45 - 12:00. Arrived at the VA where I underwent a procedure to have my PICC line replaced with hickman catheter in order to prepare for  extracorporeal photopheresis (ECP) treatment. I will still be maxed out on immunosuppressants; this does not replace the steroid treatment.

This morning's visit was met with further doom and gloom. The nurses and doctors continue to treat me with pity and see no improvement in my skin GVHD.

12:00 - 16:30. Visited the Seattle Cancer Care Alliance (SCCA) where they will begin ECP treatment this Thursday. The personnel here deal more with "failed" or refractory cases such as myself (the term "failed" refers to the failure of my GVHD to respond to steroid treatment) and are much more optimistic. They seem hopeful that if the GVHD does not spread to other organs, ECP has a good chance of being successful. Nevertheless, it will take time--possibly several months--and I must remain on immunosuppressants. Thus, I will continue in this state for some time.

16:30-18:00. Stopped back at the hotel, grabbed a 30 minute nap, and am currently back at the VA until 21:30 for my evening appointment where I will receive more IV immunosuppressants.

It is very easy to lose sight of the end at this point. My days are long; I am in constant pain; and aside from the personnel at the SCCA, there is very little hope in this process. Yet this too will pass, one way or another. I am thankful for my faith in Christ, which allows me to maintain an eternal focus and a hope in this life and the next. Without that, I doubt that I'd have come this far, and I know that I would not want to go further.

More Appointments

The doctors have labeled my GHVD between stages three and four, with four being the highest. Because it is still not responding to steroid treatment, we are going to attempt Extracorporeal Photopheresis (ECP) therapy in addition to the immunosuppressants. This means that I will have appointments at the VA every morning, then the Seattle Cancer Care Alliance in the afternoons, and evening appointments back at the VA.

There is little down time, but I must act fast. Each day that passes is another day that I play Russian roulette with infections or gamble that the GVHD spreads to other organs making death much more imminent.

Although the doctors will not definitively state that my prognosis is poor, their demeanor towards me has completely changed and they are "very concerned" about my situation. The head nurse recommended that I get in touch with a support group consisting of patients who are either on hospice or otherwise terminal.

On the plus side, my BK virus symptoms have decreased substantially so that I can get some sleep. But if it's not one thing, it's another. Now my GVHD has incited nerve damage such that I get shooting pain throughout my body at random times and the burning sensation throughout my skin has become very intense. I find myself either in extreme pain or taking a nap until the pain wakes me up. I'm hoping that I can soon calm down enough just to enjoy a good book or even watch a movie.

Tis a Good Time for Cancer

After managing to get five hours of sleep, I just woke up from some sharp pain in my joints and skin. While applying topical cream and taking some tylenol, I decided to catch up on the news while waiting for the meds to kick in. I must say that a silver lining to this whole ordeal is that I have managed to stay largely aloof from the US political scene. So far as I can tell, we have the worst of choices in our upcoming election, there are social and political upheavals throughout the country, more violence from radical extremists, and complete and utter chaos looming on the horizon. Perhaps I picked a good time to have cancer; it is a nice distraction from the scene at home and abroad. There seems to be a global pandemic of revolution that is ripe for something bigger.

A Truly Good Wife

Now that my wife, Yeonsil (연실) and I have had some time to digest the information, we have taken to hitting the books and researching treatment options. Thankfully, Yeonsil took the lead on this one and found some recent articles that indicate my GVHD may have bee exacerbated by extremely high doses of medication.

My oncologist is world renown, has appeared in several studies, and is quite the celebrity in his field. He also has an excellent track record of saving lives. Nevertheless, he is old school and tends to use high doses on younger patients who can "tolerate" the treatment. Case and point, I am at the hospital mornings and evenings receiving a total of 160 mg of Methylprednisone (this has replaced Prednisone as of today), 4 mg of Tacrolimus, and 1 mg of Sirolimus--all of which are immunosuppressants. This amount of immunosuppressants is nearly double the amount other patients are receiving. When I say other patients, I am referring to patients with AML at other centers across the world, and I am relying on recent studies and publications. Moreover, those patients have a higher stage of GVHD than I. Yeonsil, was keen to note that my medication exceeds even the most extreme cases. I am thankful to have her in my corner because I never would have noticed this. I'm honestly so incapacitated and can barely function. I have said it before, and I will continue to say that my current cocktail of over 20 separate medications daily is destroying me in more ways than I can explain. In fact, the physical transmogrification is such that I do not even recognize myself in the mirror; it's very Kafkaesque. My face looks like a bloated puffer, my chest is concave, my gut seems to be giving birth to water, and the edema in my legs and feet resemble a hobbit sans the hair.

Although Yeonsil and I understand that all patients do not fit neatly into a little chart or statistic and care must be tailored for the art of an allogenic stem cell transplant, we have to signal the red flag when treatment seems too divergent. We have the utmost respect for our team here, but tomorrow, we are going to adamantly question the approach and present some recent studies that demonstrate high doses of immunosuppressants, especially Methylprednisone, carry a heavy risk of mortality with little or no improvement in durable efficacy or overall survival. In fact, studies show that doses in excess of 20 mg of Methylprednisone increase mortality and morbidity by an alarming rate with no added marginal utility. In addition, they ruin the patient and cause several complications that culminate in a rapid and painful death spiral.

I am very thankful to have a wife that cares enough to research these things. This is not the first time that she has caught something and brought it to the doctor's attention. While I do my best to brush up on the treatment as well, this transplant has completely destroyed my ability to focus, and I find myself simply struggling just to make it through a day.

This is a crucial period. Failure to act now could easily result in an irrevocable outcome whereby I die from an infection or the GVHD spreads to other organs, becomes chronic, and I am then severely disabled with a greatly diminished quality and quantity of life. For now, we continue to pray that God will give the doctors wisdom in choosing their course of action. At the same time, God also gave us a brain and the ability to investigate matters ourselves. There is no harm in questioning the treatment regiment, discussing alternatives, and seeking second opinions. I only have one chance at this. As much as I just want to crawl into bed, chow down on narcotics, and be left alone, I am thankful to have Yeonsil who carried the baton in my stead and pushed me to be proactive at this time. I could not have a better wife, and I'm going to fight to remain with her as long as possible.

Oh, and speaking of narcotics, I knew things were bad when they started offering me more pain medication, a.k.a., controlled substances.

Finally, I do not want this to sound invidious and spiteful. I really do believe that my team has my best interests at heart. They have an amazing track record for the time periods in which they worked. However, times change, new studies reveal new information, and people must adapt. I do not pretend that my two hours of perfunctory studies can make up for years of medical school and experience. However, the studies upon which I am relying were also written by prominent figures in the field of oncology. We simply intend to present the studies and discuss the issue. When we have done this in the past, the team was very accepting of our concerns and worked with us rather than against us.

Prognosis Poor

This morning I was told that I have stage four skin GVHD with an overall poor prognosis. I have a high chance of dying from an infection while the doctors increase the dose of my immunosuppressants. It is imperative that I get through this hurdle and overcome GVHD if I want to live. Every day that I remain on these drugs is another day I'm gambling with infections.

I was going to write more details, but for now, I need to digest the information. I am just thankful that I can always turn to the Lord in prayer and know that regardless of the outcome to my body, my soul is secure with Him.

GVHD Returned

After examining my skin, the doctors have determined that my GVHD likely returned and they will again begin treatment.. Thankfully, I am not being admitted, but I will be receiving my immunosuppressants through an IV twice a day until the GVHD is again under control. That means that I will be at the hospital from about 8:00 am to 7:00 pm every day. Eventually, I can push for the ability to administer the medicine at home through my PICC line, but for now, they want to monitor me a bit more closely. Also, there are discussions about adding a third immunosuppressant. I'm barely functioning with Prednisone and Tacrolimus; I cannot imagine adding to this burden. Also, the longer I'm on these medications, the longer it takes the BK virus to clear my system. I'm also very likely to catch other infections. If I don't surmount this hurdle, it is really only a matter of time before I catch another infection. The only question then is whether the infection is deadly or not.

Showing Signs of GVHD Again

Despite having things controlled just a few days ago, my skin is already showing a recurrence of GVHD. Because I am maxed on my one immunosuppressant, Prednisone, the oncologists increased my dose of my other immunosuppressant, Tacrolimus. At this point, I am really in danger of deadly or nasty infections. I will go and see the team tomorrow morning, and I'm bracing myself for another admission. If the GVHD cannot be controlled by oral medications, I'll need the medication administered IV, which will have to be done inpatient. I am really hoping that this is just a minor flare up, and I can remain outpatient while I continue the fight.

It is amazing how much my mood improved once I was released. The mere thought of going back so soon is devastating. Nevertheless, I am only 57 days from the transplant and my situation, though rare, is not unique. Once I hit the 100 day mark, we can start discussing GVHD as chronic vice acute. For now, GVHD remains acute and there is a good chance that it can go away for good. There is also the chance that it will not be as deadly as last time.

Others have gone through worse and survived. I will do what I can to continue. Although physically exhausted and worn out, my faith remains strong.

Lack of Narcotics and Insomnia

After two and a half hours of sleep, I'm now awake and trying to cope with severe joint and skin pain. Thanks to a lack of pain medication, I've been without anything but Tylenol for the past eight hours. I was sent home with about half the amount of pain medication that I took at the hospital. Despite severe rationing and sucking up a lot of these nasty side effects, I ran out rather quickly. However, I would still rather be here with my wife and enjoying some privacy rather than spend another minute inpatient. Yet, if the VA doesn't prescribe an adequate amount of pain relief, I have been researching alternatives and may take matters into my own hands.

I firmly believe that one must never abuse narcotics. Once my pain subsides, I am very diligent about ceasing medication in order to prevent addiction and ensure efficacy. What I mean by the latter is that if you continue to take the pain medication when it is not necessary, you will then become reliant on higher doses when the medication is necessary. Later, when you need the meds again (and there always seems to be a later with leukemia), that initial dose will not be efficacious. Now you are not only begging the VA for a "controlled substance," but you are asking for a higher dose--good luck! Narcotics also have poor long term effects and they warp the mind. Because I want to resume my studies and a normal life, getting off all meds ASAP is best. That being said, there is a time when you need the narcotics and for me that time is now. I pray for just one day where I'm not in pain. It seems that since the beginning of May I have not met with such a day, and I do not anticipate such a day until my immunosuppressants are drastically reduced.

During this period of insomnia, I researched GVHD and realized that I should consider myself somewhat fortunate. There are no signs that my GVHD has spread to other organs such as my kidney or lungs. If it did, the result is lethal and at the very least leads to severe morbidity.

I also learned the difference between morbidity and mortality. Many articles seem to conflate the two, but morbidity deals with a diseased state or poor health rather than death. They are easy terms to confuse because morbidity can indirectly cause mortality. In other words, my skin GVHD has a low mortality rate, but a high morbidity rate. It can indirectly lead to death through a series of infections. As my oncologist said, I could be fine one day, have a cold the next, and die from pneumonia within a week. All the while physicians look on helplessly because I have nothing to fight off the attack. That's a sobering thought.

But through this all, I place my faith in God, I follow the doctor's advice and know that I'm with a phenomenal team of physicians, and I have loved ones surrounding me and praying for me. Life is more clearly defined, and should I overcome the hurdle of this first 100 days, I dare say that I'll be a much stronger person mentally and spiritually. Although I might never be where I was physically, I do find some freedom there.

Growing up as a fat kid, I did everything I could to lose weight. Although I was never obsessed with weight loss, it was always in the back of my mind. Now, all my muscle is gone, the steroids have me retaining fluid and other weight; such that I look completely bizarre, and the skin GVHD causes people to treat me like a leper. For the first time in my life, I just don't care about physical features, and I find the new mentality so liberating. I only wish that I could taste the food that I'm supposed to be eating. 

Of course I will still exercise and I did an hour on the elliptical today while roid raging. However, I will exercise for my health and wellbeing rather than vanity's sake. I also believe that exercise will help promote my overall recovery.

First Day at Home and the Importance of a Good Nurse

After leaving the hospital for my daily checkup, I was able to spend a solid nine hours at home. It will be a long while before I receive a day off from the VA, but I am so thankful to be an outpatient. Although I still spend half my day managing pain, I am left alone to sleep and nap when the pain subsides. Thankfully, I slept four hours straight last night and caught a three hour nap during the day. The hospital never would have allowed me to sleep for three hours during the duty day, but that's usually when I crash because of the steroid intervals.

I forgot to mention how my discharge came about. I do not know all the details, but from what I gather there were other patients who felt as though they were being held longer than necessary. Apparently one of the patients had a violent paroxysm of sorts and some of the nurses began to advocate for patient discharges. Thankfully, I had a terrific nurse that evening who spoke with the team and pushed for my release. A good nurse can really make a difference.

A good nurse will combine medications, vitals, and listen to the patient's concerns. An institutionalized nurse will be concerned with checking boxes and running through her routine without regarding your individual needs. Although I have had a few malicious nurses throughout my two years, most of the nurses, if poor, are not mean spirited. A poor nurse will usually do the following:

• Forgetting medication: This doesn't have to be pain medication; it can be any medication. When they forget, they cause the patient to lapse which can have several complications. If they forget periodic pain medication, the patient will then get behind on the pain and may not be able to catch up. I spent eight hours in agonizing pain once because my nurse just zoned out, chatting about her recent vacation, and didn't keep up with her job. Once the pain got out of control, she was unauthorized to issue anything stronger, it was 11 pm with no doctor on shift, and rather than paging someone, I got a lecture about controlled substances. The end result was 10 mg of oxy for a pain scale of 10/10. She then proceeded to whistle a tune and just keep chatting while I was on the floor. She was the perfect example of someone who was institutionalized and couldn't understand anything beyond a chart.
• Not grouping visits: Sick patients need rest, which is something that is hard to come by at the hospital. A good nurse will try to limit interruptions while others will stick to the book. If an IV needs to be hung at 21:00, vitals need to be given at 21:30, and something else must be done at 22:30, often times things can all get done in one shot at 22:00 or some other compromise. This is crucial because the policy is that vitals must be taken every four hours. That means that even if there are no other interruptions, the best you can get is four hours of sleep straight. But there is never a lack of interruptions in between.
• Become detached or apathetic; projecting an attitude that they don't want to be there: I realize that a job is a job. Even troops in combat relax their guard. As human beings we cannot be on 100 percent and for 100 percent of the time. I accept that, and I want my nurses to have a life outside my care. That being said, a good nurse will remember that her patient might be struggling just to live. Chatting or texting on your cell phone while the patient is near death really leaves a poor impression on the patient's mind. Especially when you then sigh and talk about wanting to go home from your shift.
• Just completely inept at the job: You see this in every field, but VA staff takes the cake on this sometimes. Don't get me wrong, most of my nurses deserve praise, and they are there to help the vets, but there is a large minority that just needs to go. The VA must begin to take performance seriously and start firing those that can't cut it. I had a nurse with 10 years of experience who consistently could not perform even the most basic task. At one point, I actually took the syringe from her hand and flushed my own PICC line. On another occasion, while I was vomiting bile uncontrollably she just sat there watching me and did nothing. Once I stopped,  I asked her what she was doing and she responded that she thought the color of my vomit was unique and that she wanted to see it change again from yellow to green. Seriously, I've met some very odd people who should not be in charge of a person's life.
• Floating to another ward without adjusting to the patient population: Most hospitals are short staffed and will have nurses from other units fill in from time to time. Generally speaking, those nurses will perform with the same level of professionalism and care as any of my regular nurses. However, sometimes, you'll get a "floater" who treats their cancer patient like they would treat a heroin addict in the ICU. In that case, you are fighting for adequate pain management. I have had nurses from a dementia or elderly ward try to severely limit my diet or food intake during their shift. I remember a time where after days of nausea and puking, I finally found my appetite. I grabbed some snacks that I kept in my room and began to chow down only to have my nurse confiscate the food until the doctor would approve. Of course this happened after hours and I had to wait while the nurse paged the attending physician to ask if I could eat.
• This one just deserves an honorable mention, but when my BK virus was at its worst and I urinated blood incessantly without relief, I received several of the following remarks, and mind you, the remarks came while I was on the floor and not some let's joke about this phase:
• "Well, now you know what women go through once a month." 
• "I always wanted to see a man get his period"
• "Now you know how it feels to give birth"
• Just be happy that you aren't throwing up; that hurts so much worse (from a female nurse)

Again, most of the staff is doing very well, and I'm just trying to share some experiences. I know there are some nurses that read this, and I know those nurses to be of the highest caliber. While the hospital will never be fun, a good nurse (like the ones I know) can make things manageable and build a rapport with their patients. I always ask who my nurse for the next shift is; depending on the answer, I either brace myself or relax and sigh a breath of relief. There's nothing like going through a period of intense pain and discovering that you now have 12 hours with Nurse Ratched.

As an aside, I need to do a whole separate entry on the BK virus and hashtag it for future patients. That deserves a very thorough account, and I'd say that half my female staff either didn't get it or they just didn't care. I am still dealing with BK and probably will be for another couple of weeks. However, I had learned to manage things in a certain way that helps flush the virus and mitigate incessant pain. For those who contract a serious case of BK, life is like pure, unadulterated torture for weeks on end. But because it's usually a secondary result of something primary and life threatening (GVHD in my case), physicians don't seem to focus on it and treatment takes a very long time.

Leaving Hotel California

Back to being outpatient tonight. At this point, it's all about pain management, which can be done from home. My recent surge of GVHD was again life threatening, and I am far from being out of the woods. Basically, for the next year or so, I'm going to have to be very careful about infections and sunlight. (Too much sun triggers my relapse which puts me on a heavy dose of immunosuppressants which opens me up for infections and further hospitalization.) For now, I am going to do everything possible to avoid another visit to Hotel California. This has been the lowest point of my life, bar none and I am going to do everything possible to prevent another inpatient stay.

At the moment, I'm thankful to be alive; however, these next 6 months to a year will be crucial. Thanks to everyone for the ongoing prayer and support.

Tonight, I'm going to enjoy some much needed rest without interruptions every hour. This last experience has been the worst pain and sleep deprivation that I have ever experienced. I'd rather redo bootcamp with the Marines and Army than stay here another day.

The Difference a Day Makes

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.

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.

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.

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.

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.