March 29, 2006

A Leukemia Patient's Diary

27.03.2006

Recount of the previous day:

I woke up at 11am with a sore tongue. A look in the mirror revealed 2 large black lumps on the side of my tongue where one would normally bit one's tongue. I gave little thought to this and continued my day as normal.

At about 2pm Emma arrived. By then I have noticed continued bleeding of my gums which won't stop. I mowed the lawn and did some gardening. At 8pm, right after dinner my nose start bleeding, and I treated it the normal procedures. After nearly an hour, the bleeding showed no sign of abating, and my father drove I, mum, and Emma to Concord Hospital.

At Concord Hospital I was seen by GP, who took blood samples. Examination by the nurses showed many micro-bruises - places where blood vessel has been broken under the skin, that manifest themselves as pin prick red spots. A through examination turned up many more bruises.

At about 11pm, the preliminary blood test results came back: my platelets count is 1% of that of a normal person. This explained all the symptoms so far. I was given a transfusion of platelets to stop any visible bleeding, and more importantly, any internal bleeding. I was informed there are several reasons which can cause this conditions, including an infections.

At 12am, I was moved from the ER ward to ward 6 East, where I was given another transfusion of platelets and saline solutions to keep my hydrated. I was scheduled for a bone marrow biopsy the next morning.

Recount of today:

I woke up at around 8:30, and Dr Trotman, the blood specialist, along with Dr Fernando, the bone marrow biopsy specialist, came to see me. They informed me that my white blood cell count is 10 times that of a normal person. Except, these are not normal white blood cells. Rather they are immature abnormal white blood cells. From these they were able to diagnose me: I had leukemia.

Leukemia I was told, happens to 1 out of every 100,000 people. It has no known cause, and it is a disorder with in the bone marrow that causes immature abnormal white blood cells to be produced in-mass, which reduced the production of platelets etc. It is normally found in younger children, and modern medicine has a 90% chance of curing it permanently. The process of curing leukemia is through chemotherapy, which destroys the leukemia cells (along with normal cells, but less of them). Eventually after a month of chemotherapy they hope I reach a stage called remission, where there are no leukemia cells in my bone marrow. Thereafter it is a matter of continued treatment until all leukemia cells are destroyed.

Chemotherapy has side effects. The visible one is hairloss. During its administrations I will be given a variety of drugs to help my body fight infections, protect my liver from dealing with so many deal leukemia cells, and other side effect arising from the treatment.

While I quizzed Dr Trotman on white blood cells, what is leukemia and such, Dr Fernando went to prepare for my bone marrow biopsy. A bone marrow biopsy goes like this: first they inject you with a local anesthetic, then again but deeper in. They give it a minute to take effect, then they insert a needle into my vertebrates, and suck out a bit of my bone marrow. I can tell you now it is a weird process. It isn't that it hurts - the most painful part is injection of the anesthetic. Rather it is a weird sensation having something pushing against your bones, then a sucking sensation within your bones. Weird doesn't begin to describe it actually.

After that, my dad turned up having been informed. He and Dr Trotman discussed my condition and what is to be done to cure me. When they have finished, dad went home to bring Emma, along with my things which included my laptop, ipod, pda, books, in general, stuff :P After that dad would return to work.

Emma turned up just in time for me to move to ward 5 East, after a visit to the Andrology. At Andrology, I have to give a sperm sample. This is because chemotherapy might impair my fertility. So, I can carted into a Collection Room, where there is a Lazy Boy recliner, tissues, washing basin... and a drawer of pornographic magzines labelled with "Do not remove from room. Property of Andrology Department". These included 2 Hustler maginzes, 1 Playboy, and a Penthouse. Fairly recent magzines, from March 2005. So I did my stuff, collected the sample and was carted to 5 East, bed 34. This is a private bed with an excellent view. For this I am extremely grateful. I am a person who is by nature reclusive.

Oh, this was also the day 2 grown women told me I have to masturbate with straight faces.

So after that little episode, I fasted because I have a CT scan at 4:15pm, followed by a Hickman line insertion at 4:30pm. 2 Doctors came in at about 12pm, another blood sample was taken to see how well my body has responded to the platt transfusion. Unfortunately this took 4 separate attempts on my right arm due to the fact my veins are difficult to find. After that Emma and I watched a few Simpsons episodes, then I slept after drinking some contrast fluids for CT scans. At 3:30pm my good friend David called and we had a good chat. I also got another transfusion of platelets - my platt count is now 10% of normal, which means my body is responding well to the transfusions. At 4:15 I went to get my CT scan done, at which point my parents also turned up. I was very happy to see mum, and reassured her that I am fine. We talked some about my conditions, and then it was time for my CT scan.

CT scans are fairly painless and very quick, with no discomfort. By 5pm I was finished and was carted over Radilogy for insertion of the Hickman line. A Hickman line is a tube which is inserted into a major vein on your left or right side. 2 more tubes lead off from this, and with it in place, I can receive infusions and have blood drawn easily. This is a great device which reduces the number of times I have to be poked at with needles.

While I was waiting for my transfusion, I met the Lead Engineer of Instrumentation at the Olympic Dam mines Uday Mukhopadhyay. Mr Mukhopadhyay's father is a doctor, and his daughter is a surgeon. We had a nice chat about bone marrows, and he informed me of this qualification as a psychic healer. He also educated me in his view of the human brain, that we are all gifted by God with psychic powers. These powers are lost if we drink too much, which is the only thing that destroys brain cells permanently.

At about 5:30pm I went under the knife, and was given a strong local anesthetic along with sedatives. Even though I had sedatives, I felt alter, and was aware of the operation and some of the pain. None of this was unbearable. An interesting thing about the operation was the use of X-Ray visualisation. An iodine isotope solution was injected into me, which allowed the surgeon to readily locate the relevant veins via X-Ray. It is all very cool technology.

At the conclusion of the operation, I was wheeled back to my ward, and there I feasted on hospital food. Yummy! Mum had bought some clean underwear, so I changed into those. Then we talked for some, and suddenly it was 8pm, end of visiting hours. Mum, dad and Emma left.

Right now at 9:30pm, I am feeling sore on my right side, where my Hickman line went in. My second bag of platelets has finished along with my bad of saline solution. A new bag has been rigged up to keep me hydrated. This constant transfusion of saline solutions means I constantly have to pass water, something which I have to monitor carefully so the dietitian can design a diet to assist my chemotherapy. I been given tablets which increases my urine's acidity. This reduces the chance of infection of the urinal track because the higher PH kills more bacteria, etc. I have to take these once every 4 hours.

Tomorrow I have a Lumber Puncture scheduled, where they take a sample of the liquid that surrounds my spinal cord (cerebrospinal fluid?). This can be done via a very small hole in the arrangement of the upper vertebrates. Not something I am looking forward to. But then I will have many more bone marrow biopsies.

28.03.2006

Recount of the previous evening

I called John to let him know my 21st is off, and also told him about my condition. We had a nice talk about engineering and architecture, and John, being one of the kindest and most generous souls I have the pleasure of meeting and who I am proud to call friend, took it on himself to take care of my night entertainment by bringing me several DVDs which I been meaning to watch but never go around to it.

During our talk, my IV machine malfunctioned in a spectacular way emitting a LOUD CONSTANT BEEPING NOISE. The nurses came rushing in and reset it. Half an hour later, it happened again! I was given a new IV machine which is working fine even now.

The nurses bought me some left over sandwiches from emergency room, which were delicious! I was also given a cup of hot water by a motherly nurse whose name I will get next time.

After my phone call to John, Emma called. We had one of them sickening loving couple talks until 12am, when I decided to call it a night.

Of course, it wasn't to be so. I was woken at 12:30am for another blood test. Then an observation (blood pressure, rate, oxygen level, body temperature). My IV was changed about then. I think I finally feel asleep at 1:30am.

Time: 8:30am

Breakfast was delivered at 8:30am. I will be weight soon. My night urine PH was 8 which is good. I will be "assisted" in having a shower. I hope it won't be too embrassing. My day nurse is in the same age bracket as my mother :/ I also got some zinc cream to protect my rear end from infections. Not idea when the Lumber Puncture will take place.

Time 8:50am

After I was weighted I took a shower, which was a long slow process to avoiding wetting the IV machine and because my left side is still sore and rather useless from operations yesterday. A good thing is that all bandages are waterproof, so I don't have to worry about them getting wet.

I was also told the zinc cream I am using to protect my behind won't wash off easily, so unless I give it a good rub, I will end up with a white bottom!

My late night blood test came back, everything was the same as before. My cell turn over rate is high as a symptom of leukemia. I have started on the first part of chemotherapy, being given drugs which will start the break down of leukemia cells and to protect my liver.

Oh, before I forget, my day nurse's name is Lee. She is a lovely strong lady hailing from China as I do, and she also speaks Cantonese along side excellent English. Hopefully this will make it easier for my parents to understand what is being happening to me, and reduce their anxiety.

Dr Connie, one of the doctors looking after me at Concord Hospital has informed me there is no WIFI connections with in the hospital, but I can possibly get online using UnWired. While EM interference is a concern on the first floor where all the emergency rooms are, I have been told it is not much of a problem up in the wards. There is of course the problem that on the first floor, transmitted signals have to punch through layers of overhead wiring and tubing in order to be picked up. This takes significantly more power and therefore more likely to interferer with equipment like CT scans, MRI machines and X-Ray machines.

Currently waiting for a blood nurse, then my Hickman line will be accessed and all the needles in my arms remove. That will be a relief.

Time 10:20am

My Hickman is now operational. Dad came to visit and bought news of support from our family friends. He also mentioned some alternatives should chemotherapy fail. It was heart moving to hear that mum and dad is willing to sell everything if needs be to to look after me. Our business means a lot to dad, it is his pride and joy, he mark on the world. And for me he will give it all up.

To most people, the above might not mean much - it is but fatherly love. But I have been separated from dad for 6 straight years from 1989-1995, my formative years. Before this I never realised the extend of my dad's love for me.

Time 11:00am

Dr Allison and Dr Connie came and had a look at me, along with 3 medical students. They studied me for a bit, pointing out the visible signs of leukemia. I felt quite like a specimen. I was informed then my Lumber Puncher would take place after another unit of platelets, after which I must lie flat on my bed for 4 hours. That means if I want to pass water, I am going to have to do it in bed using a bottle. This also throws my Andrology appointment out of whack. I called my friends and family and informed them that I won't be free until after 5pm.

Time 12:05am

My most recent unit of platelets have finished, and needle on my left arm has been removed. All infusions are now coming via my Hickman line. This is drastically improves my independence, something I am grateful for. I feel too pampered in this environment, every one is just so nice to me I don't feel like I deserve it.

I am informed that the platelets are distilled from donated blood. They are only good for a few weeks before they become effective. This means of course that my life depends on blood donation, and recent donations at that. Otherwise we will run out of platelets, and internal bleeding becomes a major possibility.

Donate blood and save lives!

Interestingly, my day nurse has never donated blood.

I have also been informed that my Lumber Puncher probably won't be done today due to a lack of appropriate chemicals at the moment, so this might not affect my schedule so badly. After my Andrology session, I will have another exam, one on my heart to see how well it is functioning. My blood pressure while normal is a bit high, which indicates stress even though I do not consciously feel it.

Right now I am re-reading Fallen Dragon by Peter F Hamilton, a favourite author and book of mine, waiting for lunch/andrology.

Time 3:30pm

Dr Allison came in to see me when I was having lunch. She told me that my latest blood test results show that my blood's clotting agents are not at normal levels any more, and thats why the Lumber Puncher is not happening today. I was given several infusion of the relevant chemical agents to aid in clotting, so it will take place tomorrow. After she left, mum came up after Dad got a call from one of the doctors requesting mum to come up and answer a few questions. However the doctors were still out to lunch, so mum just waited with me.

Mum haven't been sleeping well she said. The cause is easy to guess: she is worried about me. She seems much happier though being in the same room with me though, something which put my mind at ease. I worried about mum a lot, more than I do about Dad because Mum is more sensitive. Towards Mum I have somewhat of a protective attitude because she is so small, gentle and loving.

At 1pm Andrology's runner (some one who pushes me around on a wheel chair even though I am perfectly capable of walking myself) came to get me, but Dr Allison has ordered an infusion of clotting agents and wants them done before I went! Nurse Lee did a phenomenal job of getting all 10 bags into me with in 22 minutes - something of a world record if they recorded these things. Never the less her efforts were in vain, because when she finished Andrology said it was too late. I was re-scheduled for 8am the next day.

Shortly after the Radiology runner came to get me to do a Gated Heart Scan. I was given an injection of Tin which binds to my red blood cells, then 15 minutes later an injection of a radioactive agent which binds to the Tin. Using a radiation detector then they monitored my heart for 30 minutes at 3 different angles, 10 minutes for each angle. I fell asleep on the table. I slept nearly right through this period, and so did Mum.

After the scans were completed, they showed me the results - it was really cool! I could see my heart beat in real-time and in nearly 3 dimensions. It is surprising how much it contracts.

Due to the cancelled operations, Lumber Puncture and Andrology, I am now back in my room. My friends have been informed so they no longer have to delay their visit, which I look forward to.

I have been thinking, and I believe I can continue my physics special project, something I would love to continue. It is mainly data analysis, so it should be doable. If Mr. Kiss, my supervisor doesn't want to, it would be understandable because currently communication is telephone only. I am resting now with Mum nearby, waiting for my friends to show.

Time 9:52

At about 3:45pm Emma, David and Eddie showed up. They bought with them many wishes of good health and a warm fuzzy feeling of being loved. I recounted my story to David and Eddie interspersed with many bad jokes as per usual. David bought me his Nintendo DS, a great little thing to keep me entertained and my reflexed sharp!

John turned up about an hour later via public transport, and he bought the DVDs he promised! We also discovered that the TV in my room takes AV and it is a channel I can switch to. This doesn't mean I will be playing David's new XBox 360 though :P

Mum at this point has acquired a telephone card for me so I can dial out (voice), and many orange juices for everyone along with chocolate! Dad went overboard as usual when Mum got him to buy some Ferro Rocher, bring 2 boxes of 4x5x2!!

At about 6pm dinner was delivered, and I showed my family and friends the marvel that is hospital food. One of the item is PC Milk - Politically Correct Milk :P There was also Chicken Noodle Soup and the name doesn't lie: there is about a single noodle worth of noodle bits in it!

I must say however the mud cake was very tasty!

Can't wait to find out more about what I can eat so my parents can prepare something nice.

At about 7:00pm I started getting FFP transfusion, which is Fresh Frozen Plasma. These have a "shelf life" of up to a year, and this particular sample was collected recently on the 27/02/2006. I had no initial allergic reactions.

Emma's brother, Andrew showed up at 7:45pm, and we had a nice chat then too. Feeling very touched at the moment that so many people care about me :P I always feel guilty when it is like this, because I feel it is undeserved. At this point I was rather itch all over.

At 8:50pm Emma and Andrew left, and my itches has spread to my back, legs and inner thigh. I decided to tell the doctor on duty, and she concluded it is an allergic reaction which quite common for FFP infusions. I was given some pills to counter the effects. It has gotten a little harder to breath.

At approximately 9:25pm my symptons subsided, and I managed to finish MarioCart DS Nitro Standard PRIX 50cc, coming out with a Grade D I think. Since then I have been playing with their telephone system wondering if I can punch a line out, but no luck so far, mainly because I don't know any numbers to dial!

Time 11:59pm

Where there is a will, there is a way as the saying goes. For someone like me, where there is a way, there is an internet connection!

Emma got me the dialup numbers, and after some fiddling, I can dial out! The trick is to use ',' in Internet Connect (OS X) to introduce a 1 second delay where required. An example:

1,21554735xxxx,0198308308

Will sleep soon, long day tomorrow. I will have a rude wakeup call in the form of a blood test at 6am.

Cheers,
Steve