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.