P.S. Lots of Photos recently uploaded to flickr.
P.P.S. I just read this a few days ago, it’s my post in October after we thought everything would be okay with my brother’s comments. Click here. Hilarious, MST3K style commentary.
P.P.P.S. Spore will own your life when it comes out. Watch the video or read the article. It will blow your mind.
P.P.P.P.S. Oh my gosh I can’t believe I almost forgot about this. So my dad, my brother, the Lynbrook badminton team, and the Lynbrook red cross club are putting together a bone marrow drive at Lynbrook on Saturday, April 1^st. Find more info here and please spread the word! Especially to the Asian population.

A hell of a weekend

Disclaimer: This post was made based on recollections which for the most part were during a fevered state or state of very small awareness. Also for 95% of the time, I did not have my glasses and as my football friends know, I am pretty blind without them.

            So the past 72 hours have been a very crazy ordeal. Despite what I have said in my previous post about the human error and incompetence in the hospital, I must say I am very impressed by how the people in the hospital handle things when the shit really hits the fan and it is clutch time and things matter the most. Saturday morning started out well and normal enough. I woke up around 10 and opened Sonya's letter (thanks Sonya!) and after reading the one page she wrote while trying to stay awake and look productive in AP English, I began to work on the Sudoku puzzle she sent me. I solved it in about a half hour (it was a hard one). I then began to watch some 24 on DVD (I am on disc two of season four and have been watching all of season 5 so far) while eating some banana bread that my aunt made with some hot chocolate. My aunt from Alabama came to visit and help out around the house last Wednesday.

            The first sign that something was wrong was I had even less of an appetite than I had since my time home since Saturday; I ended up only eating one slice over the course of 3 hours. I was really sucked into 24 and my dad was getting really into it as well so I didn't really notice my oncoming fever until in between episodes. After the 2nd episode I watched that day, I realized how cold I was feeling and put on a pair of sweatpants over my PJ's and a jacket over my other jacket. I also put on my beanie and the hoodie of the first jacket. I also buried myself under a blanket and continued to watch one more episode of 24. Upon the shocking cliffhanger ending of the episode I felt really tired and dizzy and stumbled towards my room to burrow under my blankets and take my temperature. I found out I had a high fever of 38.5 degrees Celsius (101.3 Fahrenheit). Later it would climb to as high as 39.3. 

            I could barely sit up or turn around so I yelled for my Mom for about two minutes to no response. I summoned the energy to roll around and reach for my cell phone in the drawer and called home. After a confusing conversation with my aunt in half English and half Chinese and half garbled mumblings for a total of 3 halves of a minute, my mom came into the room and asked what was wrong. After a quick call to the doctor, my fate was sealed. Because there was no room in the hospital at the time, I was to go to the Infusion Treatment Area first to get blood cultures and do whatever they could to bring the fever down. I grew weaker by the minute and it took a lot of effort to just sit up. I felt nauseous and took an anti-nausea pill but it was too late. After I sat up for a few minutes, I promptly threw up my hot chocolate and banana bread. After being helped into my sneakers and jacket and beanie, my brother helped walk me into the car and we were on our way.

            After pulling out of the driveway, I saw to my surprise parked behind my car on the curb the distinctive blue-green leaf air freshener hanging from Andrew's rearview mirror. I looked to the front door and Andrew making a call on his cell phone. I told my dad it was Andrew's car and then he put the car into reverse and went backwards almost the whole court. Andrew ran up next to my passenger side window and I explained my fever and said a goodbye. The rest of the car ride over did not help things. The headache I got with the fever grew and throbbed with each bump of the car and for the first time in my life I felt a little motion sickness. My vision gradually became more and more blurry and by the time we were almost exiting the highway I was almost blind. My vision was like completely filled with spots and I could only see a few very large shapes. I later learned this was because my blood pressure was continually dropping and in this scenario, blood is diverted to vital organs so there was less and less blood flowing to my eyes. I spent a few hours in the ITA starting around 2 in the afternoon. They took blood cultures and a urine sample (after collection of which, I collapsed and nearly fainted). They gave me lots of fluid and antibiotics but my blood pressure continued to drop so they transferred me into the intensive care unit (ICU). There wasn't a room available in the ICU so I was sent to the emergency room first to get prepped. This is where things got really crazy.

            After my bed was pushed into the private ER room, I crawled over to the new bed and immediately there were around 5 nurses that began to poke and prod me along with two doctors conferring over what course of action to take. Over the next several hours, I had dozens of tubes/wires inserted into me, as well as 10 liters of normal saline in an attempt to raise my blood pressure. I already had my matrix PICC line which was running saline and antibiotics as well as another peripheral IV they inserted after I arrived into the ITA in my right arm which was also running normal saline. All that saline itself did not do the trick and they eventually had to give me blood pressure raising drugs to stabilize me. I also had a bladder catheter inserted into me so I would not have to get up to pee, around 5 wires on little stickers onto my chest to measure my heart activity, a catheter inserted into the artery in my wrist which could be used to draw blood but main purpose was to measure my blood pressure more accurately and constantly (they first tried to insert it into my left wrist but they couldn’t for some reason and so they had to try again and do it on my right), and finally what my mom affectionately calls the E.T. finger because it is a sticky thing that goes to the end of the finger with some metal stuff that measures oxygen saturation. They also quickly inserted a central catheter with 3 lines that is similar to the Hickman line into the neck but it is much more awkwardly placed and makes my neck constantly sore. In order to put in the arterial line in the wrist and the central catheter on the neck, they used the numbing medication lidacaine, which is the same thing used for all those bone marrow biopsies. It is like a bee sting when it pricks the skin and then a burning sensation as the medication is injected. The catheter connecting to the bladder also hurt quite a bit when it was put in. After they put in the catheter in my neck and getting an x-ray to confirm it was in the right place, they pulled out the PICC matrix line because it was believed to be the source of infection that was causing all the problems. When I finally left the ER, they had to cut up my shirt to get it off of me without causing a huge mess of all the wires and tubes inside me.

            What impressed me the most in the ER was how everything happened so fast and how it seemed way more coordinated and efficient than the rest of the hospital. There was also a very cute nurse that talked me through everything, was very smart, and also surprisingly strong that let me squeeze her hand when it hurt the most. Her name was Angie. They got a room in the ICU available for me around 7 pm and at that point they had given me some of the blood pressure raising drugs and I was stabilizing but I was still barely awake and could not sit up on my own power when they gave me some Tylenol to try to fend off the fever. Angie carried this large box and put it on top of the bed that would continue to monitor my vitals during the transport to E2 upstairs. She also pulled the bed from the front and was one of the four people that pulled me from the ER bed onto the ICU bed with a bed sheet. And then just like that she was gone. Saturday night I drifted in and out of sleep as doctors came in every so often to ask how I was doing. I was slowly stabilizing with the drugs and more fluids but in the ICU, there must always be a nurse monitoring the patient both for vital signs and in case something happens. Fortunately I was a simple case so that night's nurse I forgot his name but it was something like “Sturgy” but I will call him Barbados Slim.

            Why Barbados Slim? First of all he sounded like the Barbados Slim guy in Futurama and also he is a traveling nurse and has been to Europe, the east coast, and most recently and ironically Barbados. He said San Jose is just like any other place but much more expensive. He liked this one town in the east coast because people would talk to you randomly as you walk down the street. That just doesn't happen anywhere else except in Europe. Anyway, Barbados Slim had so little to do during his shift over me that he played yahoo text twist and got the nurse that relieved him for breaks hooked onto it as well. At first I thought he was playing spider solitaire because of the sounds but I also thought the sounds didn't exactly match. Saturday night I drifted in and out of sleep but my vital signs and blood pressure stabilized. At its lowest my blood pressure was 69 over 24. I regularly run at 130/90. A normal blood pressure is 120/80.

            Sunday, even though I had stabilized, I was still tired as hell so they decided to keep me in ICU and monitor me for one more night. I watched some of the Olympics and saw Italy win the cross country skiing relay and some of the bobsled but mostly I watched the Terminator 3 replay on CBS. Barbados Slim was my nurse again Saturday night and he enjoyed T3 as much as I did. I went to sleep after that and continued to drift in and out of sleep until this morning/afternoon.

            This Monday morning I got the nurse who happened to gather the DLI for my brother in Apheresis and she was very nice. Her name was Alicia. She gave me a bath with baby wipes and slowly began to unplug all the wires that were inside me. I only had the catheter in my neck and the bladder catheter when I was transferred to F ground at 3 pm. I also still had the leg squeezer thingies that they put on my starting Saturday night to keep my blood from clotting in my leg and to keep my ankles and leg from retaining water.

            I hadn't eaten anything since my banana bread Saturday morning because they were afraid of me vomiting up what I ate. This may have been a blessing in disguise along with my throwing up my banana bread because it meant I did not have to use a bed pan to have a bowel movement. I was only allowed some ice chips to keep my mouth from being too dry that Saturday night and all of Sunday. I ate some Jell-O right before I was transferred to F Ground. A few hours later after transferring at around 7 pm, they finally took out the bladder catheter and the leg squeezers and for the first time in 3 days I stood on my legs. My legs felt like rubber but it felt good to have some sense of normalcy. And that is where I find myself now writing all of this before and in between commercials of the Jack Bauer Power Hour. I am happy this is all over, because it was probably worse for my parents and brother than it was for me because they had to worry all this time and didn't know exactly what was going on with me at any given time. They also later told me the shade in the ER was broken and they could see me grimacing and gritting my teeth during the hurty parts. Good night and god bless. Thanks for all your thoughts and prayers. Sorry about this jumbled mess of an entry but I wanted to capture it all before I forgot it all.

WARNING: LONG, LONG, complaining type post ahead. Read ahead at own risk. However a (hopefully) entertaining reward towards end!

To clarify things:

(From discharge paperwork):

“Acute myeloid leukemia is also called acute myelogenous leukemia or AML. It is a fast-growing cancer of the bone marrow and blood cells. AML starts in the spongy red tissue inside your bones called the bone marrow. The bone marrow makes stem cells. Stem cells become fully grown red blood cells (RBCs), white blood cells (WBCs), and platelets. Normally, the blood cells grow in an orderly way and only as the body needs them.

With AML, certain stem cells that should become WBCs do not fully grow. Immature (not fully grown) AML cells are called myeloblasts. Myeloblasts do not grow in an orderly way. They crowd the bone marrow and prevent normal blood cells from growing and doing their jobs correctly. If you have AML, you will need to get treatment as soon as possible. Treatment of AML may help you go into remission. Remission means there are no longer any signs of leukemia. If treatment of AML works, it may help keep you in remission or may cure you. Even if treatment cures or keeps you in remission, you will need follow up medical appointments often.”

            So I just got back home Saturday afternoon. It is so great to be home, to be in my own bed, to be away from a beeping IV machine, which before seemed like a pet but this hospital visit it was more like a chain and shackle. It is great to be away from doctors and nurses constantly poking and prodding you and awaking you too early in the morning. It is great to be away from nurses poking and prodding during the night. It is great not to have to have my vital signs taken every four hours. It is great to have no more hospital menus and hospital food which is the same damn thing over and over again day in and day out. It is great to be away from the pressure of getting that menu filled out and turned in before 11 am only to find out the next day that they messed up part of the order or forgot something. But most of all it is great to be away from the inefficiencies and long waits for stupid things. Super bowl Sunday I was in a feverish state and was scheduled to get a CT scan of my head, chest, and abdomen, the whole enchilada. I was having a fever for a few days straight that day and along with that fever a headache. When you get a CT scan as a patient in the hospital, you must wait first for at least 4 hours of having not eaten or drank any non-clear liquid. Then, you usually get bumped down into the waiting list because emergencies get priority in the scanning. Super bowl Sunday I woke up at around 11 and therefore didn’t eat breakfast. They told me I would be getting a CT scan before lunch came so I didn't get to eat that either. So at first I thought, hmm okay I am probably going to get a CT scan during half time show or maybe sometime during the super bowl and I will miss some of it. Well the good news was that I didn’t miss any of the Superbowl but I didn’t get to eat anything while watching it either which was a bummer. The bad news was that for whatever reason, maybe an extreme number of crazy people doing stupid things with alcohol on the Superbowl, I did not get my CT scan by dinnertime and I was told they would most definitely do it that night and to not eat dinner. This story was told right before went to sleep before midnight. Then just as I was getting into a deep sleep, they awake me at 4:30 am to drag me to the CT scan.

            A few days later, the kitchen began to show big signs of incompetence. It first started with a Doctor's mistake when he, while writing an order for blood for me, changed my diet to no dairy. The next day we asked the doc's about this and they admitted they messed it up and changed it back. However the following day, it was still no dairy and I didn't get some of the items I ordered. We inquired again and they said it was the kitchen's fault that time. Only a few days following this fiasco one of the docs scheduled me for a CT scan on Saturday but then later changed his mind and said let's do it Monday, there's no rush and there's less staff on the weekends. This was the Saturday before the Superbowl I think, they changed their mind again on Sunday because my fever persisted. So for lunch they sent a liquid diet tray to me and then when they found out they changed they decided to send another regular tray. However the regular tray they sent was TOO regular for me; it was a hamburger with lettuce and tomato. Unfortunately, I cannot have the lettuce and tomato because being neutropenic, there is increased risk of infection from eating fresh fruits and vegetables. So finally, they sent a third tray which was a plain hamburger. I guess I should've enjoyed that hamburger more because they worked so hard to get it to me. But after the last two rounds of chemo I have lost my appetite and never feel hungry. I have to force myself to eat and eat things like ensure and protein bars. I bet it is these kinds of stupid things that make the hospital cost over $5000 a night.

            But don't get me wrong, this last hospital visit was probably my most enjoyable which is probably because of a number of things. First of all, I knew what I was going to be in for and was ready for the long haul. I didn't even get excited when they began to talk of going home soon last Wednesday because I had a feeling I could be in here for a lot longer. Second, more than ever I took it one day at a time and kept myself busy. I focused on walking around everyday, taking a shower everyday, and filling in the rest of the time with TV, playing on my Nintendo DS, or some kind of art/creative thing. Many thanks to senorita Czerkawska for getting me many things to keep myself busy. I made an Eiffel tower and a dinosaur from kits she gave me and I built and painted some clay stuff that I got from the art therapist. For some reason, all my previous visits I never let the art therapist do anything because I guess part of me thought they would want me to talk about my feelings and probably just do some stupid drawing. But most of all, senorita Czerkawska got me the ultimate book of sudoku and that was the most important thing of all because it kept my dad busy and less annoyingish.

            So in terms of my treatment, everything was going well and I was on my way to getting cured when I got the fever right before Christmas. I managed to get home for a few days when another fever happened on the 29th as I was having a clinic appointment with my doctor in the morning and then I got a bone marrow biopsy that same afternoon and they found out I had relapsed. I immediately got admitted into the hospital and then got chemotherapy the next night. I got a bone marrow biopsy on Monday the 9th. Now, I don't like, and my mother especially doesn't like, the doctor who did the bone marrow biopsy because when he did it, it was not even a full week after the chemotherapy ended so it might have been too early. Let's just call him Dr. X. Now Dr. x when questioned about why the biopsy was being done early said simply Dr. A (the higher ranking doctor) said to do it today so I am going to do it today. You can always refuse to have it done if you want. The next thing Dr. X did that was quite upsetting was when he chose which side to do the biopsy on. The last biopsy I had (on the 29th when it was determined I relapsed) was done on the left side so he insisted on doing it this time on the right side. My mother and I both warned him that I had very hard bones and that he should do the left side because it is easier. He insisted nonetheless and did not manage to get very good samples and he ended up with a sore wrist. Not surprisingly, because it was done too early (at least in my opinion) and he did not get a good sample, the biopsy basically showed us nothing. And I got one of my most painful biopsies for no reason. Next Monday, Martin Luther King Jr. Day, Dr. X was back again to try again, this time on the easier left side. However because his wrist was STILL sore from doing my biopsy a week earlier, he had to get another doctor to help him do the biopsy. This time, they managed to get decent samples and it showed there were still many cancerous cells in the marrow. Based on this information I got two more days of chemo on the 20th and 21st, the following Friday and Saturday. The follow up biopsy done on the 30th showed although smaller in number now, the cancer cells were still there and obviously chemotherapy wasn't enough to finish the job. So I was scheduled to get a Donor Lymphocyte Infusion or DLI on February 10th (I'll tell you about a DLI soon). I got another biopsy on the 6th to just make sure nothing had changed in that the cancer didn't somehow get all eaten or had decided to run rampant. The biopsy was also done to determine the dose of the DLI. In total, I got 4 biopsies in 5 weeks and even now it hurts to bend over even slightly to reach low counters or pick something up. The last two times were more painful because I guess they had not healed completely when they were done. And we all know how I feel about Dr. X.

            So what is a DLI? Well basically, they get the Donor (my brother in this case) and they suck out his blood for 3 hours, and with a machine separate out the Lymphocytes (certain white blood cells that fight the good fight) and then put those newly harvested into me through an Infusion, just like a blood or platelet infusion it happens in a few hours and nothing exciting really happens. How/why does it work? Honestly, they aren't sure. The cells that get infused themselves die after a few weeks so how can it have such a lasting effect? They have been doing it since the 80s and it just seems to work for some reason. I like to think of it like Paul Revere making his ride through the night telling everyone "The British are coming!!" and changing the tide of the war. Or like when Gandalf and his riders came in on the dawn of the 7th day and changed the tide of the war. Or like when Jack Bauer decides he's not going to pussy out and saves all of us from nuclear disaster. Or like when the Burger King shows up after a long days' work and you get to eat a wonderful sandwich that could probably kill you if you ate it too much. You can see my "artists" rendition of what this might look like in the body here. What you have to remember here is that my old immune system is completely gone. All my good platelets and red and white blood cells are from my brother. They are being crowded out by the cancerous cells which are still mine. So these 1 times 10^8 lymphocytes per kilogram  (72 in my case) that got put into me somehow change the tide of the battle and cause enough of a immune response that my brothers cells will eat my bad cancerous cells (graft vs. leukemia effect). The flipside of this double edge sword is that if there were too many of my brother's cells I could develop graft vs. host disease where my brother's cells eat my gut and skin recognizing it as foreign. These two things can happen independently but usually if you have GVHD then the graft vs. leukemia effect is happening as well. Because of this double edged nature of a DLI, if there were less cancer cells I would’ve gotten a lower dose of lymphocytes something like 1 *10^5 cells per kilogram to reduce the risk of causing GVHD without any graft vs. leukemia effect.  We won't know if this DLI thing worked for 3 weeks and if all goes well, nothing exciting will happen between now and then.

P.S. Please ask me any questions you still might have

P.P.S. HAPPY VALENTINES Day all!!