Hong Kong Morris - Getting past Leukaemia

HA! Two of my last four posts have been about the blog, admin stuff, rather than about my progress through the recovery stages of my marrow transplant.

That's good - it suggests to me that I am actually 'getting past leukaemia' as the page title says. Hooray! (or Hurrah! or even Huzzah! if you're feeling antiquarian).

Its is still "getting past" though, I'm not there yet. As I mentioned a week or two ago:

"...the reason I was in last week was that I have a rash around my belly and back. Could be heat rash, could be mild GVHD. Though GVHD is usually on face, neck, palms, soles, arms - almost anywhere other than the trunk - so we're not sure."

That was during my trip to hospital on the 15th. The doctor added a small dose of steroids to my daily drug regimen and we let those work for a couple of weeks. On my follow up visit last Thursday (May 29th) I saw a different doctor. This one took the rash (!) step of assuming I have some interest in the treatment I'm receiving and volunteered some information!

He looked at some blood chemistry results from when the rash first appeared 2 - 3 weeks ago and noted some slight abnormality in my liver function from around the same time. The organs most commonly affected by GVHD are the the liver, skin, and gut - so this is confirmation that the rash is mild GVHD rather than heat rash, or soap allergy or whatever.

This is good - mild GVHD means that the new white cells will be zapping any of my old ones that might still be lurking about - thus eliminating (we hope) the chance of the leukaemia returning (again). It's also bad - if I'm getting GVHD now there's a chance that it will hang around for the long term - though whether that means for a few months or permanently we can't say yet.

He doubled the steroid dose that I'm taking to 20mg daily - though as he pointed out it's still a tiny dose - less than what they prescribe to asthma patients.

In fact he was talking out loud as he decided what to do - he could have upped the dose of one of the immunosuppressants that I'm taking; "But we're hoping to have stopped that one completely by the time you're a year post-transplant so increasing the dose now would be a backward step. And the steroids are much faster acting..." More information - a target date for stopping one of my drugs! I shall make a point of asking the powers that be (ie the nurses) to make sure I keep seeing this Dr. Patients-are-people-too! in future rather than my usual Dr Need-to-know-you-don't!

So here I am. Externally I'm well - thin, fit looking, mostly smiling, beard coming back, scalp not so visible not so shiny....

Internally - my guts and digestion are pretty much normal. My blood is getting there: Red cell counts are almost back to normal, platelets are normal, white cell counts rising happily. My Neutrophil counts are still a little low and more variable than we'd like - but not a cause for worry yet.

This news about the liver function concerns me a little - but the doctor didn't seem to think it was a big deal so I'm not worrying unduly. And of course I didn't bother to ask whether I'm allowed my celebratory glass of wine.....

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A new look for the blog: http://blog.morris.hk

by Malcolm! on Sun 01 Jun 2008 01:57 PM HKT

After a couple of years of posting to this blog mainly for my own pleasure I actually began to gather a readership back in 2006. Not many of you, but hey - quality over quantity :)

Of course, as we all know, you only started reading this site because I was ill - but if that what it takes.....

Now you know I'm here, and you've bookmarked the URL you're hooked. Maybe. Especially if you've signed up for the notifications. So of course I'm going to change everything.

The blog has been hosted on Tucows Blogware server, and while it's usually up, the pages are sloooow to load and behind the scenes the system is clunky and not particularly flexible which makes customizing things hard work. After some thought, research, and a few technical gremlins I'm ready to move to a new server! I'll be using Wordpress for the new version. That will mean little to most of you, but to me it means a solid platform that I'll be able to tweak, fiddle and customize to my heart's content.

The new site is taking shape at http://blog.morris.hk. Although there's not much there at the moment I hope to be able to transfer all the existing content from here in the next few days. Though from what I've read, I can expect to hit a few hurdles on the way so I don't know when it will actually be ready.

But some day soon I'll change a few settings - and the next time you aim for www.morris.hk you'll automagically end up at the new place. The internet's clever that way.

It's fun to be doing something like this again.

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Thursday, May 22

Rolling back the years.....

by Malcolm! on Thu 22 May 2008 07:11 PM HKT

Last night as we were heading to bed Deb commented that I've lost weight - my ribs are visible! So when I went to the clinic today to have my tube flushed I weighed myself.

For some reason I looked at the scale in pounds, rather than kilos: 160lb - which I automatically converted to stones (showing my age a little) - 11 and a half stone. Wow. That's exactly the weight I was when I left school 27 years ago. For the metric minded that's about 72.5 Kilos. It sounds light to me but the BMI calculator says its smack in the middle of the correct range so I'm not going to argue. Though I'll start to get concerned if I slim down much more. And for the record, my blood pressure is fine too (110/60 or thereabouts :-)

I was 83kg when I had my relapse in July, and almost exactly exactly the same weight when I came out of hospital in October which is pretty surprising. Most people waste away over the course of a transplant but I guess the intravenous stuff they were feeding me just stuck.

I've been shedding steadily over the past months as I stopped taking the steroids, lost water, and started exercise again. I always lose weight when I spend a lot of time at home, or on my own because I tend to eat when I'm hungry, rather than just because the clock says it's lunchtime. Stopping alcohol, junk food, sweet snacks, etc has probably helped too.

Interestingly (or not) - I keep forgetting to ask whether I'm allowed to drink alcohol. Several hospital visits ago the doctor lifted my dietary restrictions, and each time I return I fully intend to ask him whether I'm allowed a celebratory beer, or and occasional healthy glass of red wine. But by the time I get in for my consultation my mind is always full of other thoughts and I forget to raise the question.

On my visit last week the topic I was burning to raise was the result of my bone marrow biopsy. If you remember that was the 6 month check to see whether any white blood cells with my DNA were floating around, or whether they were 100% donor. This is a key point because anything less than 100% would mean there is a chance of the leukaemia coming back.

And his response? "The laboratory haven't contacted us yet, so that probably means you're OK. They only call us when there's a problem or bad news...."

After a little further inquiry it appears that these genetic tests are funded by public donation rather than by the government so they dont have $$$ to waste on admin. I choke. The quality of the medical care here is great but concepts like empathy, holistic care, treating the whole man, seem to have passed them by. The idea that I might have been worried or anticipating the results seemed completely novel to him... Breathe. pause . Breathe. Smile.

Oh - and the reason I was in last week was that I have a rash around my belly and back. Could be heat rash, could be mild GVHD. Though GVHD is usually on face, neck, palms, soles, arms - almost anywhere other than the trunk - so we're not sure. But to be safe they have upped the level of one of the drugs I'm taking, and put me on a very low dose of steroids again (2 pills a day as opposed to the 12 I was on when I left hospital). I'm almost excited by the change - it reminds me that I really have something to be careful about after a couple of months where I've been getting careless.

More next week when I've been back for my follow up.

Toot!

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Monday, May 19

Admin. Because I care about my readers.

by Malcolm! on Mon 19 May 2008 02:34 PM HKT

Some of you have noticed the "Change Detection" panel at the top-right of this page. A few of you have gone in and signed up to be notified when I post something new. And a couple of you have pointed out that you receive notifications when nothing appears to have changed. Sorry about that.

If you're not signed up to receive notifications, and have no plan to do so then there's nothing much of interest here for you today. Sorry about that too.

For those of you who *are* interested: The system was reacting to *any* change - so if I went in to correct a hastily misplaced apostrophe, or add a link to my blogroll, ChangeDetection would fire out its messages. It also fires off occasionally for reasons that (currently) elude me - I'm working on it.

I've modified the code so it should now only react to changes made in the centre column. Stuff in the side panels and the header should be ignored.

If you're still getting notified when I haven't posted anything new and if it bugs you, there are a couple of things that you can do to help yourself. You'll need to go to www.changedetection.com and log in with the email address and password you used to register.

    Click the link that says "you are monitoring 1 pages for changes"
    Click the check-box beside the "Hong Kong Morris" entry, and then the Edit button.
    Check the box marked "only send alert if sizable change", and then the Update button

The other thing you can do is to check the page you are monitoring is http://www.morris.hk only. Anything with a
/blog or /archive... or other bits at the end of the URL "may give results that are undefined" as they say. However I don't think you can edit the page address that is monitored. You have to delete the current one and create a new one. Sorry about that. :)

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Sunday, May 4

Readjusting the mindset...

by Malcolm! on Sun 04 May 2008 02:11 PM HKT

Nothing major has happened physically in the past week - but I've been making a few subtle adjustments mentally.

A couple of odd things from my conversation with Darren a couple of weeks ago stuck in my mind. He said that still when he presses a lift button in a public place he'll use a knuckle or a pen rather than a finger tip. Pushing open a door he'll press a place above or below the 'sweet spot' where 90% of people push. I understand that - I do similar things. Habits like that reduce the chances of picking up a random infection, and every little is worth while.

But he's six years post-transplant, while I'm just over 6 months - why is he still worried?

Towards the end of last year when I first got home after the transplant and weeks in the isolation room I was hyper-aware of bacteria, viruses, and potential contact with them. If I touched a railing or door handle in public at times my awareness of it was almost like a big red buzzing cartoon sign ("unclean, unclean") - until I could do the ritual handwash, or wipe with an alcohol swab. But that mindset faded over the months as I grew stronger and found I can function without picking up every bug that passes me on the breeze.

Because I've had what the doctors call an 'uneventful course' in the months since September I had fallen into thinking of the leukaemia as something rather like a bad 'flu, or a broken leg. Sure it was serious, but I've had a mental image of a time in the future when I would be fully recovered. Like a broken limb, or having your tonsils out, it would be done, dusted and completely in the past.

Since that afternoon with Darren I've had time to reassess and remember what I read and learned when I was first finding out about transplants. The effects are permanent (thank goodness :) but so are some of the side effects. My immune system will never be 100% of what it was. My sense of taste won't be as subtle. My teeth will be more brittle. My risks of other sorts of cancer are raised, etc., etc.

I need to build the habits that will allow me to live comfortably with this new reality. My body will never be something I can just rely on to the same extent as I did in the past (I suppose that's true for all of us as we get older, but in my case it's a little more solid, a little more sudden...)

So over the past weeks I've started paying more conscious attention to how I interact with the the world again. Walking to a ferry I note people who cough or sneeze on the path or in the queue, and I'll then consciously put distance between us when I pick a seat. I'll still buy a coffee - but if the milk's been refills in the same jug since this morning, I'll have it black thanks, or, better still, I'll change my mind and have a bottle of water.

It's not the near paranoia I had when I first came home, but I'm working on a heightened sense of awareness of my surroundings. It may not actually save my life, or keep me out of hospital, but it can't hurt.

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