Three Week Sabbatical from Blogging

Yesterday I really pushed and advocated for my discharge. I have to be in Seattle shortly for a transplant, and I am not ready. Because our stay in Seattle will last several months, I have to treat this event like a move. This means that I pack up my stuff, throw it in storage, and leave for Seattle having concluded my affairs in California. There is a lot to do in a very short period.

I woke up today feeling like a very different person for three main reasons: First, after three weeks of constant interruptions and sleep depravation, I was able to enjoy several hours of necessary REM sleep. Second, because I am the gatekeeper of my own pain medication, I am able to take it regularly and stay ahead of the pain. Third, I can choose my food, which means eating healthy options that fit nicely in my mouth without exacerbating the pain.

It hasn't even been 24 hours since my discharge, and I already feel like a new and fully rejuvenated man. My plan is to do nothing except recover until Monday, at which point I will resume class attendance and start preparing for our move.

This is going to be a busy time. I fought for a three-week break, but I cannot ask for more. In a short period, I must be mentally and physically ready for this trip. Right now, I'm not even close; but a lot of that will change as I continue to recover and my blood counts rise (presently my hemoglobin is only around 8, which is just above the need for a transfusion).

I would like to thank my readers, and I promise more updates once I leave for Seattle. But for now, I am going to take a sabbatical from blogging and focus efforts on studies, preparation, and spending time with my wife.

Nevertheless, I'll be back.

Best Burrito Ever!

14:52: I wake up after a nap and go to the cafeteria that is supposed to close at 16:00. This is very common and they usually stop making food around 14:00. Thankfully there is a Shoppette next door where I can grab something to kill my hunger.

15:12: I return to the cafeteria to nuke my burrito and have a seat, but the door is locked and staff is trying to beat Friday Bay Area traffic. Thankfully they forgot to lock the back door.

Someday, when I feel normal again, I am going to find this exact burrito and see if it tastes as good as it did today. This just might have been the best thing that I have ever eaten in my entire life. Because I still have the infection in my mouth, I haven't been eating much solid food. This burrito was perfect for someone like me. I cut it with a fork and knife, slid it to the right side of my mouth, and chewed it easily because it was soft. Each bite was like a little slice of heaven. My only regret was not buying the entire supply.

Quick Thought 7

The government consistently makes the sum of something worth less than the whole of its parts.

Quick Thought 6

If Mexico has any foresight, they'll pay for Trump's wall. Pretty soon it will be used to keep us in rather than to keep them out.

Another Routine but Painful Experience

• 19:30 - Experiencing manageable pain, I ask for pain medication.
• 20:00 - I begin to realize that the medication is not coming so I take some Tylenol that I sneak in with each VA visit.
• 20:45 - Yet again, a rogue physician decided to ignore the advice of my oncologists and make arbitrary changes to my pain medication--another sleepless night. I immediately demand to speak with this doctor. I have her name written down on a growing list.
• 21:00 - Although the physician responsible fails to show up, I am standing face to face with another doctor willing to listen. Without yelling or cursing, I sternly explain the situation and demand that the physician who wrote the orders be ask to give an account of what she did and why she did it without consulting my oncologists or me. This doctor seems sympathetic and understands the situation.

Rather than having the patient's oncologist, cardiologist, or other specialist write the orders for the patient's medication, those specialists act as an advisor to an overall medicine team. That medicine team then gives a final report to another team that overseas my medication. Thus, someone with whom I never speak or meet is able to come in and make changes to my prescriptions whenever they so desire. I have had this happen five times now during this three week stay alone. Also, this broken system results in prolonged delays for periods when a patient is in sudden pain and needs medication fast. Just send me home with a bottle of oxy and I'll treat myself better than this.

As a result of the chemotherapy, leukemia patients quickly become neutropenic. It is in this state that I become infected and experience the worst type of pain. General practitioners do not understand this, and they constantly screw up my orders. If this is happening to me, I'm sure it's happening to others.

During the day, I have constant interruptions that prevent me from sleeping. At night it is the constant pain that keeps me awake. I have not slept in a week, as evidenced by the large bags under my eyes. Add the vitals and other night time interruptions and this place is strong argument for purgatory.

On Education: Open Access to Closed Doors

In an age where everyone can go to school, where you choose to go to school matters. Things have changed so rapidly that a college education is no longer exclusive. First, thanks to the ease at which a person can apply for loans, everyone is able to spend the money on college, if they so choose. Second, unless you are trying to apply for certain scholarships or get into a prestigious school, test scores matter much less than they used to. Many schools are even trying to waive what were once standard entrance exams.

I have not done an exhaustive study on the subject of education, but I do notice that easy money has flooded the education market at an alarming rate and for an extended period of time. During this period, several things happened:

• People used student loans as a form of income during the Great Recession.
• Because of the rising number of applicants, the number of schools increased (supply and demand). Some of these schools are little more than diploma mills. (Many of them magically have costs that exactly match the G.I. Bill.)
• Education costs rise. When people are playing with borrowed money (or the are using the G.I. Bill just to get housing) they often do not think about the cost.
• A degree becomes the norm. While a degree used to mean something, it is now standard or required for a job that pays less.
• Because degrees became the norm, employers seek more exclusive degrees

Congratulations. We have created an environment of open access to education while closing the door on opportunities for the educated.

No Country for Honorable Men

I just talked to a man the other day. He was drafted into Vietnam and fought for two years in the U.S. Navy, served another four years in Guam after the war, and was honorably discharged. All he wanted to do was go to culinary school after getting out, but he couldn't because the VA lost his DD 214. (This is a piece of paper you get when discharged, saying whether it was honorable, how long you served, rank, and other info). Without a DD 214, you cannot get VA benefits, and several other items of interest. After fighting for years to get his DD 214, he received it, and enrolled with his local VA to start getting medical evaluations. After going to the VA, he began complaining to his doctor of some pain and other symptoms. For two years that VA doctor ignored him and failed to diagnose a form of cancer that is completely curable. Unfortunately, that curable cancer turned into incurable cancer and he now has only a few months to live. They sent him here to die. For his last few months, he gets to undergo a series of painful treatment to extend life just enough to sit in a filthy room, hear dementia patients screaming, eat food that is worse than what our prisoners get, and watch a few channels on a five-inch screen that is barely audible.

Remember that this was Vietnam, a bloody war and he was hated by his own countrymen, forsaken by the government, and now dies without dignity.

Even if his family wants to fight for justice, they will have a very difficult time suing the VA. You can sue the government for malpractice through the Federal Torts Claims Act, but winning is difficult and payouts are low.

I wish I could at least say this was an exception, but it's not.

FAQ Part II: Transplant

1. When do you leave for Seattle? I don't know, but it will be soon. I am going to need three weeks at home after being discharged from the hospital here in San Francisco.
2. Do you start the transplant immediately? No, there is a barrage of tests that I must undergo, additional chemotherapy, and radiation. The goal is to eradicate the cancer and wipe me out, making my body more receptive to the donor's cells. It's going to be like chemo on steroids.
3. How long until you recover? I have absolutely no idea. It can be as little as two months or as long as six. As things progress, I should get a better idea. However, I will be in Seattle throughout the treatment and the recovery.
4. Are there risks? This is not a benign procedure and there are risks. I will have more information on this after speaking with the transplant specialists
5. Can you have visitors? Absolutely. During the beginning of the treatment, my immune system will be zero, and the doctors may have me quarantined. Once I recover, only children and sick individuals are prohibited from visiting. This is because my immune system will be somewhat compromised throughout the treatment.
6. Are you inpatient the entire time? No. I am only inpatient as long as necessary, which depends on several factors. The majority of the treatment is outpatient.
7. Do you need a place to stay? No. I I have two options
1. I steal another set of hospital clothes for my wife, dress her as a patient and have her go into a vacant room. Because it is a VA facility, they will just assume that someone lost her paper work; but nobody will question whether or not she should be there. Incidentally, you could modify this by stealing a uniform, pretending to work at the VA, and then complaining that you have not received your check. Don't worry if you have no experience in healthcare or it looks like you are confused about your role and what to do; you will blend right in.
2. The VA has contracted with nearby housing to provide a one-bedroom unit free of charge. If the above option fails, my wife and I will stay there.

Status Update 15 Feb 2016

Defining Neutropenic Pain: That feeling of exhaustion you get when you're going on day four without solid sleep because your mouth feels like someone took a jackhammer to it, inhaling is as painful as rupturing a lung, and there's a little gnome living inside your head who has just discovered how to make fire.

FAQ Part I: Medical Questions

I am going to begin a series of posts that answers some frequently asked questions from friends and family members. This is the first of that series and pertains to medical questions. If I think of additional medical questions, I will include them here by updating this post rather than write a new, separate post. Also, feel free to include questions in the comments. I may answer them in the comments or include them here.

1. Why is it so difficult to obtain an overall survival rate or prognosis? What is your overall prognosis? If you want to try to understand my overall prognosis, there are several factors that you must consider. Because all factors are relevant and must be included in order to get an accurate answer, oncologists differ widely in their predictions. Finding a study that accounts for all such factors is very difficult. For example, you might find a study on relapsed acute myeloid leukemia patients; but the research might have been conducted on a population over 60 years of age. Also certain factors are more determinative than others; i.e., being younger helps a lot, while being male may not make much of a difference, if any.

I am not going to provide a hard number for this blog until I speak with an actual transplant specialist. The overall prognosis that I hear from oncologists varies greatly, and they are reluctant to comment on the odds for an allogenic stem cell transplant. However, they all agree that without the transplant, my chances are nearly zero. Once I hear a prognosis, I will report it here.

Here are the factors to weigh, in no particular order:

• Acute myeloid leukemia (AML): There are several types but this is this the most common for adults. AML is not rare, but my genomes are.
• Inversion 16 (a genome), which is usually written as inv(16): This is very favorable and causes many oncologists to be optimistic.
• FLT3-TKD (another genome): Unfavorable and causes other oncologists to be overly negative. The fact that I have both inv(16) and FLT3-TKD is very rare and studies are often inconclusive about my overall prognosis. Additionally, do not conflate FLT3-TKD with FLT3-ITD, which is more common and has a very poor prognosis. FLT3-TKD may have a better survival rate than FLT3-ITD.
• Male: This should not be weighed heavily, if at all; but I have seen studies showing that males have a slightly higher mortality rate--very slight.
• Age, 33 years old: The younger you are, the better your chances. I will have a much higher survival rate than a man in his 60s. In fact, most of the elderly are not even eligible for a transplant because they cannot tolerate the procedure.
• Relapsed or recurrence, meaning this is my second time: This is very negative and weighs heavily against me. I relapsed slightly over a year after my last treatment, which is fairly quick according to oncologists. The longer it takes to relapse the better.
• Complete Remission after induction chemotherapy: I achieved complete remission after induction chemotherapy, which is good. One study noted that without achieving complete remission from induction chemotherapy (the first round), chances for survival are below 10 percent.
• Complete Remission prior to transplant: It is crucial that I remain in complete remission throughout the transplant process.
• Factors affecting the transplant itself: This procedure is not based on blood type. Instead it is based on the HLA count (human leukocyte antigen). The number is out of ten, meaning an HLA count of 10 (AKA a “10-count match”) is better than an 8-count match. I believe 6 is the minimum to proceed with a transplant. As far as I know, I am expected to receive a 10-count match. This is very good news in that it decreases the mortality rate of the transplant itself and it reduces many of the negative side effects from the transplant. However, I am unsure if it affects my overall survival rate (other than the fact that it lessens the odds that I die on the table).

2. If you are in complete remission why are you doing more chemotherapy and a transplant? Without additional chemotherapy it is highly unlikely that I will remain in complete remission until the transplant. Second, because my cancer has already returned and resisted the chemotherapy in the past, it will likely resist additional chemotherapy regiments. A transplant is the only means of curing relapsed AML.

3. Will you be getting a transplant or chemotherapy? Because this is a recurrence, I will be getting an allogenic stem cell transplant, which is the transplant that comes from using the bone marrow of another patient

4. Can I donate my marrow and is it painful? There is a database that you can join; it is easy and you sign up online. After signing up, I believe you go somewhere and give a sample by having someone swab your cheek. They will then call you if you are a match for someone.

Do not do this if your only goal is to see if you match for me; do it to help others if you are so inclined. Although I sincerely appreciate the thought, your chances of matching with me are less than one percent. Only siblings have a high chance of matching.

The old method used to be painful for the donor because they were forced to go in through the hip. The current method is relatively painless for the donor and the recipient. Also, the donor recovers fairly quickly. The recipient on the other hand can have a long and painful road to recovery.

As of now, I have a nearly perfect donor match!

5. Why do you stay at the hospital so long?

• Chemotherapy: The chemotherapy that is meant to kill leukemia also kills off the surrounding blood cells, including white blood cells. This causes the immune system to drop severely such that the patient’s risk of infection prevents him from being discharged. The patient must remain in the hospital until his immune system recovers to the extent that his body can naturally fight off an infection.
• Induction chemotherapy is the initial round of chemotherapy. It is strong, blood cells drop immediately, and it takes longer to recover. Induction chemotherapy results hospital stays of a month or longer.
• Consolidation chemotherapy begins after the patient achieves complete remission from induction chemo. The purpose is to maintain the state of complete remission. These regiments are less potent than induction chemotherapy, and blood counts take longer to drop. Once the blood counts recover, you rinse and repeat consolidation chemo until the oncologist is satisfied that it is no longer necessary.

A Scary Episode

Today the pain continues, and my wife and I experienced a horrifying episode. Without warning, I felt a sharp pain near my heart. The pain in my heart has retreated, but the doctors are still concerned. Nevertheless, if I take a deep breath, lie on my back, stand, or sit, it feels like all my ribs have suddenly broken or my lung collapsed. EKGs and X-rays are normal, which is good, but also a little frustrating.

I don't know what caused this, and I am not on much to control the pain. Yeonsil and I are still in a state of shock. Meanwhile, the doctors have no idea what is going on with the sudden infection in my mouth, and they do not know what caused the sudden pain in breathing.

But thankfully we are together this Valentine's Day, and life continues a bit longer for us to enjoy each other's company.

내 사랑에게 하피 발렌탄인데이

몇년전에 내 이상형 오히려 만났다. 그녀의 이름은 "배연실" 이라고 부른다. 첫눈에 이여자는 다른 여자랑 많이 다른지 일고있었고 얼굴이랑 찰 어울렸다: 이쁘고 정직하고 두부처럼 하얬다. 항상정체를 드려냈다. 너를 만나서 후회없이 살고 드디어 진실한 살랑 뭔지 알고있다.

하피 발렌탄인데이 내사랑. 첫눈에 반했던것이 진실한 사랑 으로 변했다. 너 이전에 이말큼 사랑으로 나온적이 없다.

SINGAPORE AIR DOESN'T CARE!

For the record, I just want to say that Singapore Air is refusing to fully refund a plane ticket in spite of the fact that I furnished supporting documentation of my cancer diagnosis and the fact that I tried to cancel well over five months in advance. Moreover, it appears that I was at least entitled to a credit, which they have failed to offer.

You pay a little extra to use Singapore because of their high customer service rating. However, in my case, United fully refunded the other leg of my journey with very little effort. Meanwhile, Singapore does their best to avoid or frustrate customer relations by constantly rerouting calls, placing me on hold for nearly an hour each time, and ignoring emails. Any response is automated, glib, dismissive, and fails to address the actual issue.

If Singapore does this often, I'm sure it makes them a tidy sum in the aggregate. Moreover, they just bank on the fact that dead men tell no tales. Well, I'm not dead yet, and I'm calling you out Singapore. Let the motto ring: Singapore Air doesn't care!

Thank you to my Readers

I would like to thank my readers for not being overly pedantic. Many of these posts are written hastily and while I am sick. Even today, I am experiencing some acute pain in my mouth that seems to trigger the nerves throughout my face. Actually, I can't remember the last time I was in so much pain. But remember the silver lining: Pain in the face and mouth means that I'm not eating, which means more weight loss, which permits me to binge on fat-free iced cream and zero-calorie yogurt--which I can get myself after fighting so hard for fridge access!

Anyhow, after reading just a couple of my older posts, I caught several errors. Thank you for continuing read my blog in spite of these errors. I'd promise to be more careful, but sometimes it's a struggle just to post, let alone proofread and revise. I'm usually in a zombie state from the pain, lack of sleep, and medication.

Also, I started this blog for various reasons, but I never imagined that it would gain some traction. I may look at restructuring the site to be more user friendly. Right now, it's just an eclectic mix of scattered thoughts.

A Panegyric on Scalia

Today, the legal community and the United States lost “one of the most consequential judges and thinkers to serve on the Supreme Court.” Even Barack Obama had enough class to speak well of his vociferous opponent; unfortunately, I cannot say the same for others.

I do not know if his death was sudden, or if he was struggling to hang on despite pain and failing health. Regardless, he knew he was not getting any younger, and I am sure he was tempted to resign early. Yet, rather than rest on the laurels of past achievements, which were many, he sought to remain in office and struggled to uphold the text and original intent of the U.S. Constitution.

As a law student, you either read him with a resounding "amen" or saw his opinions as legalistic argle-bargle. Love him or hate him, he was certainly entertaining. He was the last of a dying breed in the legal world, a real straight shooter who was not afraid to cut through the chicanery and call a spade a spade (or call Chicago pizza a "tomato pie”).

I leave you with my favorite Scalia quote:

“If I have brought any message today, it is this: Have the courage to have your wisdom regarded as stupidity...Be fools for Christ. And have the courage to suffer the contempt of the sophisticated world.”

In Sickness and in Health.

When I married my wife, we quoted the words "in sickness and in health...." I cannot believe how faithful she has been throughout this whole ordeal. Several times a week she drives through Bay Area traffic to deliver food and provide me support in every way fathomable.

I have seen many marriages torn apart by this disease. You would think it disgusting to abandon someone during this period, but often it is the patient that pushes the spouse away. This is especially true for men. I too went through a period where I wanted my wife to be free of this situation. But then I saw how much she loved me, and I saw how much it hurt when I isolated myself from her.

Cancer affects everyone. The more your spouse loves you, the more it hurts them to watch you suffer. Patients exacerbate an already stressful situation by forsaking their love ones.

Happy Valentine's Day honey.

Leo and Cancer Dogs

I miss my dog while at the hospital. I certified him as an Emotional Support Animal, hoping that my wife could bring him to the ward and cheer up other visitors (and me too of course). Certain hospitals allow this, but the VA does not.

I thought I'd post a photo of us sleeping side by side just before I started this round of chemo. As a side note, I just realized how fat he's gotten since I began treatment. I'm going to attribute this to the fact that he's binge eating because he's depressed that I have cancer. That's probably not true, but that's what I tell myself.

Actually, there are studies showing that dogs are able to detect cancer very early. Researchers have toyed with the idea of using dogs for this purpose. Imagine sitting in a waiting room and having such a dog casually stroll through the aisles of the hospital or ER. Now picture that dog walking up to you and calmly sitting down as an indicator that you are cancerous. Not a great way to break it to someone that they might have cancer. As a practical joke, you could develop some cancer cologne and put it in the air vents or spray it on people passing by.