Archive for November, 2011
Guess where I am now? Go on. Guess. Let me give you a hint.
That’s right. I’m back in the Funhouse. :(. I got a phone call earlier in the day and basically was told that the CMV virus in my body has suddenly become active and I need to come in for treatment immediately. The CMV virus is fairly common and is rarely dangerous to people with a normal immune system. For immuno-compromised people however, it can be quite deadly. This infection is also the most common post-transplant infection to get, and almost everyone gets it.
Still, doesn’t change the fact that it’s annoying to be in again, albeit for a much less sinister reason. As my Hickman line was taken out a few weeks ago, they also had to put a canula into my arm. Not the most pleasant of experiences, and I’ve had this done only a handful of times thanks to the Hickman.
It was nearly midnight when they finally got around to doing it, and the nurse performing the deed must have been on her feet the whole day cos it took her 2 tries to get the canula into a suitable vein. This is what it looks like.
So now I am in the hospital again, hopefully for not too long. The regular course of treatment for this infection is 5 days, depending on the levels of the virus of the blood after that. So hopefully I can be home by the start of next week.
It’s been an interesting few days since the last post update, apologies for the lack of posts. We have been quite busy. I’ve been working 2 days a week from home, and it’s been interesting. Since I’ve got the all clear to take the tube during off peak hours, I am thinking of heading in once a week in December, or perhaps January. The GP reckons that it’s not a good idea to go in December, as it’s the time when they see the most flu cases. She says to stay away till January.
Since I’ve been back home I’ve also been pretty lazy. Most of my days have been spent sitting around or lying in bed and as a result, I am quite weak and my stamina isn’t what it used to be. As a result, my joints are constantly aching and sore after the smallest effort. It started with my elbows and fingers, but now it’s in my knees and ankles. Since then I’ve tried to get out and walk a bit more, and we went to Winter Wonderland a few days ago. But after walking around for nearly 2 hours, my legs were starting to give way. Not fun at all. I think the key word here is probably ‘moderation’.
On the treatment front, there’s now no sign of GvHD, but I am still using the steroid creams just in case. The doctors have also reduced my visits to the clinic to once a fortnight rather than once a week, which is a good thing. Although it’s December and many people are taking much of the month off, doctors included so a little bit of shuffling may be necessary. But I am looking forward to spending less time in the hospital.
And, after being bald for nearly 3 months, the hair on my head is finally starting to grow back! The last time round I lost my hair very gradually over the course of a few months and I got sick of it falling off so I had it shaved off. It started growing again literally within the week. This time the hair fell out literally overnight and it’s taken much much longer to grow back. A sign of the massive damage the treatment has done to my body? Perhaps. But I take it as a sign that my body is regenerating.
As you can tell from the picture, there’s an appreciable amount of hair on my scalp now. Up until a few weeks ago it was growing in patches and was very thin. Apparently cyclosporine promotes hair growth. So much so that I am starting to get hair growth on my cheeks, my eyebrows look like caterpillars and my eyelashes are getting longer. Interesting effect isn’t it?
We’re all starting to wind down (or up) for Christmas now. We’ve got a Christmas tree and presents, and all we need is to get some decorations for the tree and we’re all sorted. Here’s to a merrier Christmas this year. 🙂
I got quite a nice surprise when I went in for my weekly checkup at the Funhouse today. My donor sent me a card. Which was very very nice of him. We don’t know much about him, except that he’s in his 40s and lives in Taiwan. But now we know that he’s likely to be a Buddhist and the card came from a Buddhist Bone Marrow Centre somewhere in Taiwan.
Basically the message in the card says that it’s his calling to save people with his marrow. Well, the wife suggested that I put the whole message in Mandarin up here, so here goes. Hope it works.
For those of us (myself included) who can’t read Mandarin, there’s always google translate. It’s a bit weird, and doesn’t actually mean what it translates to. It’s like trying to read an instruction manual written originally in Japanese but very badly translated into English.
Anyway, since I’ve received the stem cells, I’ve been craving less meat and wanting more vegetables. It seems unlikely that the stem cells caused this, but if in some weird way it does, we know why. If he’s a Buddhist, it’s likely that he’s a vegetarian. 😀
Anyway I like vege. No complaints there. But it’s a nice gesture and we’re going to send him a card too. There can’t be any identifying information on there, so it has to be anonymous but it’s OK. We just want to convey our gratitude cos without his selflessness, I won’t have such a good second chance in life. 🙂
It seems that my battle with GvHD isn’t over yet. I’ve developed yet more rashes on my forearms and face. Having had it before, I was able to recognise it quickly and apply the necessary creams and steroids to the affected areas. Hopefully it won’t spread like it did the last time. The rashes seems fairly mild in comparison, but it always starts off this way before ballooning into something looking red and angry.
The rashes on my face seem to have been there for a while though, as they’re turning brown. I needed to get a different cream for the face, as the one I have for the rest of the body is too strong to be used on the face. Oops. The doctors think it’s not something they will be worried about too much, unless it spreads further and gets angrier, or unless it comes with nausea, vomiting and diarrhoea. But the one thing good about GvHD is that patients with GvHD, acute or chronic, has a much lower chance of the Leukemia returning. And that’s very good news indeed.
Also since it’s the flu season here in the UK, I’ve asked the doctors if I should be taking the flu jab as a precaution. Basically, there’s no evidence either way for the jab. It certainly does no harm, and it can do good. Generally it’s recommended that patients DO go for a flu jab during flu season but there are complications as well. As my immune system is still recovering and is being intentionally suppressed, there may not be enough of the cells to react with the flu jab to develop the necessary antibodies. If that’s the case, the jab is wasted. It’s generally agreed, however, that everyone around me should be getting the jab. Which they have done.
It’s nearly day +60 and things seem to be going ok. I still feel a little listless due to the lack of energy, but bloods are recovering well. The random fatigue seem to be getting less and less frequent, and I can concentrate better when I am working, which is always encouraging. I can also walk further and longer (even with a 6-kg baby strapped to my chest :)) so things seem to be improving. But like the doctor says, in terms of recovery, it’s very early days yet. Full recovery generally takes years so 60 days is nothing from that point of view. The important thing is that I should be vigilant for any additional GvHD symptoms and to avoid falling sick, if possible. Also to keep exercising and to stay active.
I hope to be able to travel to work soon, just a day a week, and at off peak times. It gives me something else to do and all that shoving and pushing people on the tube is also a form of exercise. But we’ll see what the doctor says.
I like spicy food. Growing up in South East Asia, almost every meal came with a liberal sprinkling of fresh, pickled or dried chilli. While my tolerance of all things spicy was never every that high, I was reasonably OK with moderate to high levels of chilli heat. I’m not sure when it started, but I realised that my tolerance of chilli dropped dramatically some time when the wife and I were living in Australia. I realised that my scalp and face started perspiring heavily if the meal had chilli in it. There wasn’t even that much spicy food there, and even the traditional Malaysian and Singaporean dishes there were relatively watered down by comparison. But still, I had the sweats every time I ate something with chilli in it. When I went back to Singapore and Malaysia, well, combined with the heat, it was drenching.
I reckoned the chemicals in the chilli caused the sweats rather than the actual heat of the chilli. I could get the sweats with sweet chilli sauce. And that’s nothing. Things are slightly different now. While my tolerance for chilli heat remained unchanged over the years since I’ve moved to London, it has changed dramatically after I had the conditioning treatment for the transplant.
Now, I can’t take ANY chilli at all. Not a single bit. A single shard of Jalapeño in a mouthful of guacamole is enough to set my mouth on fire and for my scalp to think it’s Niagara Falls. Again, I don’t think it’s the actual heat of the chilli causing the reaction, but the fact that the layer of mucous protecting my mouth from the chemicals in chilli has been eroded by the chemo and radio therapy. So when I eat something with chilli, I get the full smackdown. It’s like rubbing chilli into your eyes. Not very nice.
This is a culinary disaster for me. Most of my favourite foods have chilli in them in one way or another. And I seriously can’t imagine spending the rest of my life not eating my favourite foods. So do I just bite the bullet and take spicy food in the hope that my tolerance for them goes back to what it was? Or do I just live with not eating spicy food? Decisions decisions.
My meds have been reduced! Yay! Well, actually only one medication. I still take the rest at the normal dosage but well, it’s a small step to more and more meds reduction.
l used to take 8g (16 500mg pills) of Valacyclovir every day and it became a massive struggle to not only swallow 4 pills at a time, but also to replenish my supplies. 1 box of Valacyclovir has 42 pills, and at 16 pills a day, it lasts just over 2 days. So every time I get my supplies replenished, I come home with literally a sack of pills. I shudder to think how much it costs the NHS every fortnight. Apparently Valacyclovir is a very expensive anti viral drug. Add the 2 immunosuppressants and other drugs, all I can say is thank goodness for the NHS.
So now, instead of taking 16 pills a day, I take 2 pills a day. 😀 Massive reduction but it comes with some risk. There’s a chance that some of the dormant viruses in my body will start becoming less dormant and start infecting me. The biggest risk in my case will be the CMV virus. I’ve tested positive for the virus, and so has my donor. Normally the virus stays dormant and doesn’t bother the host but sometimes it starts becoming a problem and that’s when strong anti viral drugs are needed.
The high dose Valacyclovir helps keep the virus in check, and the longer I stay on the high dose, the less the virus will have a chance to become a problem. But I can’t stay on the high dose forever so it’s a risk that I have to take eventually. So the next step here is a reduction in the visits to the hospital. It’s going to be a major step indeed when that happens. And I look forward to it.
Over the last few weeks, I have watched part of the Korean and Indian Formula 1 Grand Prix, many Rugby World Cup matches including the finals where the All Blacks scraped past the French, and I feel thankful. Thankful to be alive, thankful to have had a successful transplant, thankful to be home and relatively well.
I’ve been reading the accounts of several other ALL patients and survivors, and the horror stories about their experiences and symptoms, not to mention the delay in diagnosis and getting them admitted and treatment started. Some of them have been given the run around by different doctors and have had to wait weeks before being allowed to take a blood test. By that time, the Leukemia had spread to their organs and had become a much more serious condition.
It made me think about the time when the doctors here diagnosed my condition and how they moved to get me warded and treatment started. I was very very lucky. It took them all of 11 days from diagnosis to starting treatment. I’ve read about a little boy in the States whose parents were given the run around for months before one doctor consented to do a blood test, and subsequently discovered that he had ALL. By that time, it had spread to his organs and he needed intensive radiotherapy to kill off the cells in his organs. He’s fine now (thankfully), treatment has stopped and his Hickman line has been removed as well.
So yes, I am feeling thankful to be alive, and although things could be better, it could be a lot worse.
I am also thankful for Sophie. It’s been very tiring for sure, and the wife and I really don’t have any time to ourselves at all now. But every time we see her smile, it makes it all worthwhile. We were talking the other day and Sophie nearly didn’t happen. If we had put off trying for a baby for just one month, we wouldn’t have had her. The credit goes fully to Hyde Park’s Winter Wonderland and copious amounts of mulled wine and mulled cider.
Anyway, it’s nearly Christmas and the only thing I wish for is a happier Christmas than the one we had last year. 🙂