Archive for January, 2011
After nearly 4 weeks of treatments, it’s getting harder and harder to do things. I have less energy, the random tiredness comes more often and stays for longer, I lie down more often, I take more frequent naps and I feel, on the whole, worse than when I started.
This is to be expected, as the drugs used in the chemotherapy starts to have a massive impact, not just on the bloods and bone marrow, but on my body as a whole.
I also spend more and more time in my room. I am not encouraged to leave the ward before 5pm on weekdays, as the hospital is very busy and there’re lots of bugs around. I also need to hang around for my jabs. And it’s annoying; bored, cooped up and sick! It’s actually quite fortunate that this ward is full of sick people, otherwise there will probably be a riot of some sorts.
My body is also slowing losing the ability to heal itself quickly. They gave me a plasma transfusion a few days ago as my clotting screens weren’t at a point that they were happy with. Sight knocks will result in a massive bruise that can stay for weeks. Small cuts take ages to clot and will be infected if not treated properly. They are also giving me platelets and bloods regularly as my blood counts drop further and further.
So I am weaker, I get tired more easily, I take longer and more frequent naps, and it takes a lot of effort to get things done. But I have to try, as I don’t want to lay in bed the whole day. I will continue doing my usual grocery orders, errands, appointments, etc but obviously within the limits that I set for myself. It will only get more difficult, but at this point, I am fighting me. With God’s Grace I will succeed. And I can only become stronger because of it.
One of the side effects of chemotherapy is that your taste buds get all messed up. Food doesn’t taste the way it should, and this is pretty bad as chemo patients typically suffer from a loss of appetite, and do need to increase their calorie intake to deal with the effects of chemotherapy better. This just exacerbates the situation. The nurses say that it’s due to the chemo, and we should avoid our favourite foods while undergoing chemotherapy as it can change the way we think our favourite food tastes like.
For someone like me, it’s even worse. I love eating, and I love food. And not being able to taste the food I am eating just drives me mad. It’s quite odd that when you’re eating, say, a piece of Doritos Nacho Cheese corn chip, and it doesn’t taste like anything you remembered. In fact, it tastes downright disgusting.
I’ve also noticed that some food will leave a bitter aftertaste in my mouth. I couldn’t identify what it was at first, and it went on for about a week and was absolutely driving me mad. Then I realised that it was the salt in the food. To me, salt tastes bitter.
I found out when I ordered an all day breakfast for lunch (yes, yes, unhealthy, etc) the other day. The baked beans tasted normal (sweet, sour), the potatoes were, well, tasteless but the bacon and sausages (normally salty) tasted bitter. I experimented with the potatoes (added some salt to it), and lo and behold, bitter potatoes!
Like any good experiment, the results had to be repeated and confirmed. So to further verify the accuracy of my findings, I had a mouthful of the takeaway dinner the wife brought to the hospital for herself and my mum (malay fried rice and fried ‘kway teow’). And yes, bitter fried rice.
So now I try and avoid salty foods from the hospital menu. For some reason, they ladle salt into the food here but hopefully I can identify the ones that don’t have that much salt in them. The food the family brings over doesn’t have a lot of salt in them anyway, so they’re usually OK. But my mother said she will remove salt from my food completely and use herbs instead.
My taste buds will go back to normal a few weeks after the induction phase, so hopefully I will be able to enjoy the food I love in the way they were meant to be enjoyed.
Will the Springboks retain the title? Will the All Blacks choke? Again. Will the Wallabies discover their form in time? Will England be Jonny Wilkinson and 14 deadweights? Will France go the way of their football team? Find out in Sept 2011!
Rugby has been described as a game for thugs, played by gentlemen. Compared to football, which is a game for gentlemen, played by thugs! I know which I prefer! I’ve always enjoyed rugby, both as a player and an armchair referee. I’ve always found it more ‘genuine’ than say, football. Rugby is very physical, no doubt. It’s the nature of the game. What I’ve always found irritating about football is that the multibillionaire footballers will crash to the ground, holding their face and screaming in agony after someone grabs hold of their diamond encrusted little finger. Wussies!
And then there’re the football ‘supporters’. We had the opportunity to watch a Premier League football game last year (Liverpool vs. West Ham) at Upton Park, and you see barricades, police on horseback, security people in high visibility jackets everywhere, separate areas for fans from different clubs, it was insane! Then there’re the obligatory fights and drunken riots. Charming.
When the wife and I were in living in Australia, we went to New Zealand for some snow boarding and adventure sports in the South Island. We managed to catch a tri-nations match between the All Blacks and the Wallabies in Christchurch. We got the cheapest tickets we could find (approx NZ$30), but we were right at the touchline, 3 or 4 seats away from the tunnel where the players ran out onto the field. It was a fantastic experience.
The best thing about that game were the people. I had my Wallabies jersey on, and the wife had the green and gold scarf. The bloke next to me looked at me and said, ‘so, Australia eh?’. I replied, ‘mate, I’m here for a great game between the two greatest sides.’ And he laughed and gave me a beer!
The wife and I will also be reaching several milestones by the time the RWC comes along. We would have been in the UK for 4 years. Peanut would have been born. And I hope to be on my way to a full recovery. So I do know what I will be doing in September 2011.
This will be quite a ‘prickly’ week for me. I will be receiving 4 injections in the span of 6 days. The first was supposed to happen yesterday (Monday, 24 Jan). It’s the intrathecal injection of the Methotrexate into the spinal fluid.
Before they can administer the jab, they need to make sure that ‘the planets are aligned’, according to one of the doctors. They first have to make sure that my bloods are in order. So they do a coagulation screen, clotting test and they also do a complete platelet count to make sure that I will heal properly from the jab. If something’s even slightly off, they will top up whatever they need to and proceed only when it’s OK.
My clotting was a little off yesterday, so they were not able to administer the jab. They gave me 3 bags of plasma and 2 bags of a clotting agent to help my blood clot. They then gave me an infusion of Vitamin K, which helps the blood clot as well. I also got a top up of platelets in the morning to help me heal from the injections that I will get throughout the week.
There are also strict rules to follow. I need to get the L-Asparaginase jab before I can get the Methotrexate jab if it’s done on the same day (it was), and they need to prove to the pharmacist that I have completed my entire course of chemotherapy via the line before they will release the drugs. Says a lot about the drug doesn’t it? Starts with a ‘T’ and ends with a ‘C’. Or ‘P’ and ‘N’. Same meaning.
The procedure was surprisingly painless. First they identified a place to ‘get in’, as they say. As I was relatively thin, they had many options. They numbed the skin and muscle around the area with a local anesthetic and inserted a small needle into said place. That was a weird sensation. It was like being zapped with a car battery. But otherwise, completely painless.
They also take some samples of the Cerebral Spinal Fluid (CSF), for a number of reasons. They check for infections in the spine and brain. This is unlikely in my case as I don’t have any of the symptoms. Leukemia cells can sometimes end up in the CSF, and they check for that too. Again, unlikely in my case otherwise they will include a full brain radiotherapy as part of my treatment. Yikes!
After all that is done, they administer the drug into the CSF. This literally took seconds.
So that’s the first intrathecal down. I have 4 more to go in the next course of the Induction phase. I also have 2 more L-Asparaginase jabs (Thursday and Saturday), and it’s the end of Course 1. Yayy!!
Right. This is interesting. I just received a chart of the treatment plans and schedules.
After the induction chemotherapy (I’m in course 1, there are 2 courses), the treatment moves into an intensification phase. This is to make sure that the Leukemia cells are in remission.
As the name suggests, it’s intensive (they use high doses of the chemo drugs), but it won’t be as long. It lasts about 6 weeks, and most of the time will be spent at home. I will have to spend 2 – 4 days in the hospital as an inpatient to receive chemotherapy but it’s much better than being warded for 4 weeks at a time. I will have to report to the hospital quite often to get my bloods and observations done, but that’s OK.
What comes after is more interesting. After the patient recovers (bloods build back up, etc), they do another bone marrow biopsy. They check if the Leukemia cells in the bone marrow are in remission, and are at a level that they are comfortable with. They then make a decision of continuing chemotherapy or opt for a stem cell transplant.
This depends on the patient and the availability of a donor. ALL is predominantly diagnosed in children, and they have a much better cure rate without a transplant. So if I were a 5 year old girl, I would probably not require one. Older patients, or patients with complex cytogenetics are often put on more chemotherapy (called consolidation) and this lasts anywhere from 10 – 30 weeks. This is normally done as an outpatient treatment, but there will be some treatments that will require a stay in the hospital. Patients on this course will also need more chemotherapy in tablet form (maintenance chemotherapy) for the next 1 – 3 years, and possibly be on chemotherapy pills for the rest of their lives.
For young, relatively healthy adults, a stem cell transplant is normally recommended. It’s a very difficult and harrowing procedure, involving very intensive chemo and radiotherapy treatments. Essentially, they need to destroy as many of the patient’s own blood cells as they possibly can before the stem cell transplant can take place. Then there’s the risk of the patient’s body rejecting the donor stem cells, or the donor stem cells treating the patient’s body as a foreign object and attacking it instead of protecting it. If all goes well however, the patient will literally have the donor’s blood type and immune system.
If transplant is an option, it will be scheduled as soon as possible. The ideal timeline would be 4 weeks after the bone marrow biopsy. For the transplant, it’s a stay in the hospital for 1 month at least. According to the doctors, if the transplant is successful, it can take up to 2 years before the new immune system will be at its full strength.
The best thing about my schedule is, barring any delays, complications or infections, and if all goes according to plan, the transplant (if there’s a donor) will take place in end May or early June. That means out of the hospital by July, and be well enough to see Peanut born in August. 🙂
And THAT is something I would really really look forward to.
I posted the ultrasound scans for Peanut a few weeks ago. Since then, the wife brought something that’s in the scan to my attention.
Here it is again. Do you see it?
It’s a little freaky but do you see the letter ‘P’ where the arrow is pointing to? It wasn’t intentional, and we certainly didn’t notice it there before. I added the arrow at the behest of the wife just to illustrate where the doctor says Peanut is. And it does look like a ‘P’. And it’s in the original ultrasound print as well.
It’s so cool, yet so freaky. 😀
It’s sometimes good to look at ourselves and laugh at the absurdity of it all, even in potentially life-threatening situations. Hey, if you can’t laugh, you can’t be positive. You can’t be positive, you can’t beat this thing.
The family were here one day and were joking, laughing and generally goofing off. My older brother took a few pictures, probably to freak his mates out but it all ballooned from there!
Lemme out! Lemme out! Lemme out! Not sure sure who’s being protected here. Maybe it should read ‘protected isolation’ instead of ‘protective isolation’?
Magnesium drip. I’ve been getting this and Calcium a lot lately. Something about the drugs impeding my body’s ability to store and absorb some essential minerals. I also get Potassium effervescent tablets some mornings and some other mineral supplements as and when I need it.
The Hickman Line, sans the sutures. The nurses usually remove the sutures for lines, but in my case, the doctors had to do it as the sutures somehow went under the hole in my chest. So they had to cut the suture very close to the line. If they cut the line, it’s arterial blood everywhere!
The dangly bits of the Hickman Line. You can see the Magnesium drip running into one of the tubes. They normally use the red one to extract blood, and the other two are used to administer drugs or to give me drips, or both at the same time.
Note the flabby mid section and the beginnings of a muffin top.