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.