Ok, let's get down to business. Everyone knows that Leukaemia is a very terrible disease but not many people know that any form of Cancer IS cureable. People constantly assume what chemotherapy is like and what the hospital is like, etc.....I tell you, it is absolutely impossible to try to imagine what Chemo and Leukaemia is like unless you have experienced it. Family members go through a different kind of pain. The kind that makes them feel helpless seeing a loved one in a position not meant to exist for anyone.
I am going to try to help both cases. Those in a position I was once in and those in a position my mother and fiancee were once in.
Leukaemia is a cancer which attacks the bone marrow. Most forms of cancer reproduce at an alarmingly fast rate. Chronic Leukaemia takes a long time to settle in. We need bone marrow to produce the blood in our bodies which in turn carries a whole lot of essential nutrients to different parts of the body. Mainly, oxygen to the brain. Which is why a common symptom of Leukaemia is feeling tired all the time.
In all of us, there are Cancer cells. No matter how healthy we are, we all have cancer cells. The bodies immune system, amazing as it is, controls the level of cancer cells in the body. It keeps the cells, or blasts, at less than 5%. Anything over 5% means trouble. Certain things can cause Cancer. Research has shown that benzene and radiation are the primary CONTRIBUTORS to causing Cancer, however, I have spoken with my doctor on another possible cause. That's the good thing about lying in hospital for months. You have a lot of time to think. I was convinced that, because I was not on a healthy diet, ie. certain hamburger places which are internationally famous, my immune system was not getting the essential vitamins and minerals it needed for proper function. This has since been proven by Universities worldwide. Now, I know what you are going to say. Why doesn't everybody whose diet is lacking in nutrients get Cancer?
The answer is simple.
Everybody is different. We each have different strengths and weaknesses. Unfortunately, 1 in 3 people will have a weakness in their immune system because that is the latest figure released by the Australian Cancer Society.
Something else which has recently been discovered is that there is, in some cases, an inversion of 2 particular chromosomes in the patient. In this case, a bone marrow transplant may be necessary. Bone marrow transplants are an amazing thing. The bone marrow is collected into a bag and a drip is attached to the patient. The marrow drips through the veins and settles in the hollows of the bone. That is nothing short of amazing in my book. Unfortunately, not enough people are registering themselves as donors.
So many people are dying because they cannot find a suitable match. And the match is extremely important because the patient could die if there is not a suitable match found.
I have often spoken to people about donating bone marrow and they don't want to because they are afraid of the pain. It is not painful because you will be having the most incredible sleep when they take it out. It may be uncomfortable for a day or two but we all experience a bit of discomfort. I am fortunate enough to have friends who will not have second thoughts at being tested and donating bone marrow for my recovery, but, fortunately for me, that may never have to happen.
Another type of treatment that helps in the recovery of Leukaemia patients is the Stem Cell Harvest. This is much safer and much more reliable than a marrow transplant. Stem cells are easy to understand. Stem Cells are found in the bone marrow. They are the origin of blood and other organs. A stem cell is just one cell that divides into the different blood cells that we need. ie. a stem cell produces white cells, red cells and platelets along with other cells in the blood like T cells, etc... What is most incredible is that doctors cannot differentiate the characteristics from a stem cell to a red cell or medically called, haemaglobin. It is unrecognizable. BUT, stem cells DO have different characteristics to red cells. That's why there is a machine in use now called a stem cell harvester. It's not a small one either. Two lines are inserted in the patients veins. Different locations in the body. The blood flows from one line, through this machine. The machine then separates all the cells in the blood. White cells, red cells and platelets go back in the body through the other line while Stem Cells are collected in a bag. It is an extremely long process. 3 hours to be exact and the patient is not to move during those 3 hours. When this process is finished, the patient feels exhausted because the blood that was going through the machine has done the equivalent of travelling 3 times around the earth. This severely hampers the performance of the red cells ability to carry oxygen to the brain, hence, the patient feels tired. Once the Stem Cells have been harvested, they are examined and then transplanted back into the patient after the second treatment.
Now, you may be asking isn't it bad to harvest a Leukaemia patients stem cells. The answer is NO, provided 1 precaution is taken. The patient is to be in remission before the stem cells can be harvested. Myeloid Leukaemia patients usually get two treatments of chemo. After the first treatment, those patients who are in need of a marrow transplant can elect, of their own accord, to undergo a Stem cell Harvest. The risks are greatly reduced but it is more expensive. The main risk in a marrow transplant is that there is a germ or 'bug' that can get to the marrow. Once that 'bug' is in there and has gone into the marrow, all sorts of complications can set in, including, unfortunately, death. If a patient is getting a marrow transplant, the doctors treat it, or they should treat the marrow with a special antiseptic. Smells like rotting fish.
Usually, doctors will recommend a stem cell harvest only if a suitable marrow match is not found. Marrow transplants are easier and cheaper to undergo. Fortunately, I never had to have neither. I was very lucky to have the team of doctors I had. They knew what they were doing and I put a lot of trust into them. Basically, because I had to.
The word chemotherapy has a few people confused. Chemotherapy, or chemo for short, is NOT radiation treatment as some people think it is. Chemo is a combination of 3 drugs, 1 natural and 2 are synthetic, which is injected into the blood stream via a "Hickmans Line". A Hickmans line is something like a rubber tube which is surgically inserted under the skin somewhere on the chest, brought up to just below the front of the shoulder, looped around to go down to the main vein that leads to the heart. This line is able to stay in the patient for about 2 years before it needs replacing. The only ugly thing about it is that it attaches itself under the skin. This is however normal so that it doesn't move around too much. The doctors pull it out when it is time to go home or in some cases, if an infection sets in, which can happen.
This line is amazing because it gets rid of the need for injections. Everything is injected into the line with no pain whatsoever. Anti-biotics, chemo, you name it.
That's another bad thing. Nurses inject you full of anti-biotics because the chemo kills all the blood cells, including the white cells which fight infections. An amazing 200 000 white cells are made by the marrow every second in a healthy person. They constantly fight infection because there is so much rubbish in the air. I can testify to how fast an infection can set. Just read about my Septic Shock.
The side effects of chemo are not horrendous but they are not pretty either. The main function of chemo is to kill ALL cell dividing parts of the body. Cancer cells divide and multiply extremely quickly which is why chemo is so effective against them. However, mouth lining, hair, stomach lining, sperm, skin, all these are cell dividing. Unfortunately, Chemotherapy makes a person 99% sterile. This figure is disputable, but it's what the doctors told me.
UPDATE: MY WIFE IS NOW PREGNANT AS OF MID APRIL 2005 !!!!!!!
There have been cases where Post Leukaemia patients have been able to concieve children, but this depends on certain things, of which I have no idea of. When the mouth lining is destroyed by the chemo, ulcers start to form and eating is very, very painful. ESPECIALLY citrus foods. Ouch!! Leukaemia patients vomit because the stomach lining is destroyed and the acids used to break down food, burn the stomach wall and the bodies instinct is to rid itself of whatever is causing the burning. Speaking of burning, the heartburn is very intense and the appetite disappears. Pretty soon, you get a nutritional expert from the kitchen coming to see you asking why you are not eating. Coz I'm not hungry, woman!!! My stomach is burning and I'm throwing up all over the place. Cancer's bad enough, I don't need you to tell me to eat a well balanced diet when all it does after I swallow it is instead of going out the bottom end, it's so impatient to see the world again that it has to come out the quickest exit. But let me tell you something, it feels like heaven after you do vomit because you feel all light and fresh inside.
My treatment lasted for just over 2 months. A relatively short time, but, I had the strongest dosage of chemo they could give me and it was all in one hit. My first month wasn't too bad. Of course I felt sick, my hair fell out, etc...but I think I was just glad to get rid of the Cancer that found an address in my marrow. Chemo is no walk in the park. The chemicals used are basically poison. I was given 2 different types of mouthwash, very disgusting ones. These were given to me to prevent ulcers forming in my mouth since chemo kills the mouth lining as well as the stomach lining.
The chemo was given over a period of 7 days, 4 times a day and once at night or early morning. The outfits the nurses wear while they are giving it to you are incredible. You begin to get an idea of how strong this stuff is. They wear rubber gloves, a full body apron and goggles. Then they slowly inject the chemicals into the Hickmans line, but not all at once. They inject different drugs at different times. And the weird thing about it is that you can actually taste the drugs while she injects them. This is because the drugs go through the blood stream and some of it goes to the salivary glands which make the saliva in your mouth. Now we all know how police breath testing works. Alcohol gets into the salivary glands and mixes with our breath. The stronger the smell, the more alcohol in there.
After the week is over, the blood collectors come in every morning to take blood samples for examination. I don't know about other people but I was feeling so helpless seeing people healthy and working while I was in a hospital bed with a life threatening disease. I wanted so badly to be in their position. I wanted to go home and have my life back. Please don't ever take your life for granted, it is the only one you have and it can go so quickly.
Everyday, I look outside now and thank God that I am alive. While I was in hospital, I just wanted to go outside and look at the sky, the birds, the people, everything, but I couldn't do that. I couldn't get out of bed, and when I did, it was really hard work. I was confined to a room with 4 beds. My television was my link to the outside world. Constantly hearing the older men screaming for death. I couldn't believe my ears. I was in so much pain but I never once contemplated death or suicide. I was in hospital to stay alive, not die, and I'd be damned if I was going to give up on life that easily.
3 weeks after my chemo finished, I was allowed to go home. I still remember Gavin telling me I was discharged. That word was heaven to me. DISCHARGED from hospital. I could go home and use my own bathroom, my own bed. I still had the Hickmans line in my chest, but I was just glad to be home. 10 days later, it was time to go back for my second dose of chemo. This one was a little bit more complicated. It was the same dosage, but for some reason I had complications. My mouth was full of ulcers, my lips were all hard and cracked and I could only open my mouth slightly. If I opened it up any more than I was able to, my lips would split and start bleeding. I also vomited more frequently. In the 3rd week I was confined to a private room. An infection had set in my Hickmans line so I had to have that pulled out. Not a pretty experience. Gavin did the honours and that line was pretty well stuck in there. He had to tug at it about 5 times to pull it out. After it got pulled out, I developed a fungul infection in my lungs. I couldn't breathe properly and it sounded rough. Therefore, I had to have a bronchoscopy done and a Temporary Central line put in. A central line gets inserted just below the collar bone to the main vein going to the heart. Now comes the Amphetericine. An anti-fungul agent but extremely strong. So strong that it can't be given through a drip in the arm because it will burn up the veins in the arm. It also damages the kidneys and the urine has to be monitored very carefully. If the kidneys collapse then all sorts of complications can set in. Eventually, my kidneys were right before the point of collapsing. If the dosage was more frequent, I would have been in trouble. This stuff is really expensive too. I heard it's a couple of thousand dollars a bag and there is about one and a half litres in a bag. Luckily, the fungul infection had cleared and I was back on track. This is the reason I overstayed my stay in the hospital. My white cells were slowly increasing but they were going for the fungul infection so they were dropping as fast as they were growing.
Another thing they give you in the second treatment, are injections in the stomach. Well, not really in the stomach, but in the skin on the belly. Every night the nurses come around to do this or they leave it up to the patient to do it themselves. These injections are white cell boosters called GCSF injections. They don't go forever but they do go for a little while after getting discharged.
Well, that's about all I can tell you about Myeloid Leukaemia and what is involved. By the way, the doctors let me keep my Central Line which is a temporary Hickmans line. It now sits in my bedside table. People think I am crazy for keeping it, but I look at it as a reminder of something I had beaten.
