The HospiTrial

Most of this past few days the poet's words have seemed most apt:
"Across the wires the electric message came:
"He is no better, he is much the same."

And "the same" wasn't much cop, frankly.

Today, though, there are definite Signs of Change.
And quite possibly for the better.

1. I'm feeling a bit more human: this is the most important and welcome change.

2. My neutrophils are up again today, from 0.74 to 1.26.  The 'normal' range for healthy neutrophils is between 1.5 and 7, so we're getting there.  Quite how anything inside me can even be dreaming of ever being normal again is a Miracle, given the battering it has taken over the last three weeks.  Though no one has yet shot me or thrown me into the frozen River Neva after dark (I don't think), I feel I know a little bit about how Rasputin must have felt after Round 1, which was the poison at dinner.  This is the Before picture.  I'll leave the After to your imaginations (though you can Ghougle it if you're feeling really Ghoulish).

3. The docs have, it appears, finally taken on board that my system is more sensitive than most to Cyclosporine (a vital weapon in the battle against Graft versus Host Disease - see post Loading the Dice of 22nd Feb) and are not only measuring it daily again, but adjusting it rather more delicately than previously.  At times I have felt like a character in a Kafka novel (The Hospitrial?), my pleas for more sensitive treatment of this particular drug falling initally on deaf ears, then finding some sympathy in authority (see post Progress? of 28th Feb ), only to have the situation reversed again.  I had seriously considered hiding some of the pills instead of taking them, so sure was I that they were causing a lot of my nausea, headaches and fatigue.  But then without professional help, I didn't know what dose to take myself and didn't want to knock it on the head entirely for fear of suffering something worse.   However, they have appeared to accept that it needs more careful control in my case.  Long may it last.

Progress?

No signs of the awaited GvHD yet, but equally important, have found that one of the Registrars and the Ward Sister are in sympathy and agreement with my diagnosis of headaches and sickness being largely, if not entirely, due to overdosing on Cyclosporine.  V important drug in controlling GvHD (which can be v nasty if left to its own devices) so no question of dumping it, but will be monitoring the blood levels much more closely in the immediate future and adjusting the dosage accordingly.

Feeling better already at the prospect!
And of course thanks to your lasers, which are no doubt pinging around my room like Pingy Things even as I write.
No headache and much reduced nausea today.
Hooray!

Hope to be up to a longer post soon, but meanwhile here's another of my favourite jokes to keep you amused till I return with more Boring Stuff:

A man went to a Fancy Dress Party, carrying his girlfriend on his back.
"What have you come as?", asked another Partygoer.
"I'm a Snail," he replied.
"Then who's she?" asked the Partygoer, pointing at the girl on his back.
"Oh, that's Michelle".

Loading the Dice



Finicky Feeder

MUCH better today after a couple of days feeling tired, listless and ultimately sick.
Didn't hardly eat nuffink yesterday.
Most definitely a Finicky Feeder (old family joke).
Hence lack of Boggling for a few days.
Apologies for causing worry.  I know it's just as difficult, if not more so, for you watching from afar as it is for me going through it.
Two things to remember, O Worriers:
1. No blog doesn't necessarily mean I'm dead (they're not gonna kill me off that easy).
2. Whatever happens, all is well with the world.

More of the latter anon, when I can get a word in edgeways on matters other than medical.

Docs diagnosed too high a level of Cyclosporine in the blood (one of the chemo-poisons we've been pumping into my system), so I've had a rest from it for 24 hours to let the level decrease.

As Docs have explained, since everyone's different (we're all the same, but different, innit?) it's as much of an Art as a Science managing this whole process.  We're trying to encourage Graft versus Host Disease (GvHD), but not too much of it.  A small dose of GvHD (most likely between days 10 and 14 after the Transplant, ie next weekend in my case) means that the new Stem Cells have recognised the old immune system as the enemy.  Which means they also recognise the old leukaemic cells as the enemy and deal with them appropriately: Graft versus Leukaemia effect (GvL) which is highly desirable.  However, a strong dose of GvHD is dangerous, so we don't want too much of it thank you.

Cyclosporine and Mycophenolate (the drugs being dripped into me) are both immuno-suppressants, hampering the effectiveness of the old immune system.  But if we hamper it too much, either we won't get GvHD because there's no old system for the new system to recognise and attack, or we'll get a very sick patient who might not survive the treatment.  Or both.  But if we don't hamper it enough, we won't get Engraftment and the old system will win the war.  Don't want that either thanks, cos then the whole process has been a waste of time and effort.  Not to mention NHS resources.

Overloaded Dice?

So we're trying to Load the Dice in favour of the Good Guys without doing it so obviously that the Management hauls us off the gambling table and kicks us out of the casino altogether.
Apologies to Julian, O Mighty Casino-Owner, for casting you in the role of Bad Guy.
Only for the purposes of this illustration, you understand.
In Real Life we all know that the Casino Owners are the ultimate Good Guys.
Hmmm....

Tired and Emotional

You're all much too generous with your praise and far too free with your use of the term 'amazing'.

Just trying to keep my spirits up, aren't you?

I know your game.

Well, it won't work.

I'm going to be miserable.

So there.

Felt really quite tired yesterday, whether from the Poison we continue to drip into my poor system, or from the Emotion of the Transplant, I'm not sure.
Maybe both.

The poisons are Cyclosporine and Mycophenolate.  As the Transplant Consultant told me on his ward round yesterday, the Cyclosporine removes the ability of T-cells (the Killer white blood cells from my old system) to communicate with each other, thus putting them in Solitary Confinement "like you", he said.
I prefer to think of it as taking away their radios.
Either way, it means they can't mount a co-ordinated attack against the new Stem Cells.
Hooray!

The Transplant itself turned out to be quite an emotional hour.
It was not unlike being at a Birth.
The birth of my new Bone Marrow, I guess.
Spoons in one hand and Julia's hand (attached to Julia) in the other, it was lovely to get so many messages in response to my text saying that the Stem Cells were going in right then and there.
And very affecting.
Thank you all.

Talking of the hand being attached to Julia reminds me of my favourite Tom Lehrer song.
And if you haven't come acroos Tom Lehrer, you've been missing out.
Google him immediately!

The song's called 'I Hold Your Hand in Mine' and it starts like this:

"I hold your hand in mine, dear;

I press it to my lips;
I take a healthy bite from your dainty fingertips.
My joy would be complete, dear,
If you were only here,
But I hold your hand in mine as a precious souvenir.

The night you died I cut it off,
I really don't know why.
And now each time I kiss it,
I get bloodstains on my tie....."

Can't remember any more.
That's enough for now anyway.

Drips and the Electric Chair

I had the third and last of my chemo-drips yesterday, but from today we're on to an extended regime of multi-drips instead.  Two different drugs (Cyclosporine and Mycophenolate) which assist in preventing the body from rejecting the Transplant.  This of course is a Good Thing (don't want my body rejecting the transplant without considering the alternative options properly; and I am rather relying on it to come to the sensible conclusion), but it does mean that I'm hooked up to the Drip Machine for 6 hours a day.  That's 3 lots of 2 hours, the last one starting at half past midnight tonight.  So a new skill required, sleeping while being dripped.  The nurses assure me it's no problem, so who am I to disagree?

And thank heavens for the Hickman line (see Hickman & Marrow post of 3rd Feb), which makes these drips easy and painless, and without which I'd have more punctures than the Tour de France.

Only side-effects so far have been wooziness and tiredness from the chemo (glad that's over then) and a very slight headache from the Myco-whatsit last night.  Nothing that a couple of paracetamol couldn't deal with though.

Which reminds me:
Q: Why aren't there any painkillers in the jungle?
A: Cos the parrots eat 'em all...

And the Electric Chair?

Not the US Death Row version, happily, but a very comfy Recliner which changes position at the touch of a button and makes sitting about all day a veritable pleasure.  However, I have had to evict Julia from it most ungallantly because it's not big enough for two.  Nothing to do with the fact that I can't get a look-in on my new iPad cos Julia is addicted to playing Harbourmaster on it.  Not entirely inappropriate for a one-time shipping executive, I know, and it's keeping her quiet, but also increasing her stress levels, I fear.

Had time to get out for a walk in the countryside with Julia this afternoon in between drips.  Grey, drizzly February day, but great to get out of confinement for a while.  Until/unless my neutrophils drop below a count of 1 (official definition of neutropoenia), I'll still be allowed out from time to time, which is v nice to know.

D-Day tomorrow: TBI (Total Body Irradiation - a 20 minute burst of radiotherapy) followed by the Transplant.  But the timing is still uncertain and won't be fixed till tomorrow morning (Wed 16th), so I'll try and get time to post a comment to this posting tomorrow when I get the schedule.  So that you can target all those Luuuurv Lasers.  I'm not expecting any pain (thank goodness) but my poor old Bod is in for a Biiiiiiig Surprise.  It's coping well so far.  Long may it last.

In and Out

Julia took me in to the Marsden this morning at 11.30 as scheduled.  I checked in to my room and then had my first dose of chemo administered through the Hickman line.  63mg of fludarabine, to be precise.  All went smoothly, though I felt a little light-headed and slightly disconnected from Reality for a while (so what else is new?).


In and Out in quick succession

And then they let me out again!
Hooray!
So I was home in time to watch the rugby before having a few zzzz's this afternoon.

Very civilized.

And we should be able to perform the same routine tomorrow, so my proper incarceration won't start till Monday.
That's the plan anyway.

The chemo is of course essentially Poison.

Targeted poison, but still poison.
The idea is to reduce my immune system to rubble with three days of fludarabine, then give it a final nuking with a single burst of radiotherapy on Wednesday, immediately before the Transplant.
That clears the battleground for the new troops to move in, i.e. the new blood stem cells from the transplant donor.

During this initial bombardment of my old (and malfunctioning) immune system, I am also being given lots of prophylactic medicines to prevent all sorts of likely infections taking unwelcome advantage of the lack of a resident defence force before the new one moves in.  That's the Theory.  Now for the Practice...

The Background

In April 2005 I was diagnosed with Chronic Lymphocytic Leukaemia (CLL).
It was two days before my 49th birthday.



This is me

 I had had pneumonia that March for no very good reason and it had taken two courses of antibiotics to get rid of it, so my GP sent me for a blood test.  The test revealed that I had a high lymphocyte count, a classic symptom of CLL, and further tests at the hospital revealed that it was indeed CLL.

Lymphocytes are a type of white blood cell and defend us against infection, principally viruses.  Like all cells, they live for an appointed time and then die.  New ones to replace those that die naturally are continually being made in our bone marrow.  However, when you have CLL, the little blighters refuse to die.  Not only that, but they also refuse to do their job.  So gradually your bloodstream fills up with useless (to you) lymphocytes, presumably just chillin' and partying instead of killing infections.  Eventually your bloodstream and bone marrow are so full of carousing lymphocytes that there's no room for anything else and all the other useful components of your immune system are crowded out and unable to defend you against the bacteria and viruses that regularly invade and inhabit our bodies.  So you die of something silly like a sore throat.


This is a lymphocyte

CLL can be controlled by the use of drugs (chemotherapy), but not cured by them.  So the normal method of treatment is to wait until the patient feels unwell and/or the lymphocyte count is uncomfortably high, and then to administer a course of chemotherapy to kill the dysfunctional lymphocytes.  Unfortunately of course it also kills the healthy ones (isn't there always collateral damage?), but that's OK because new ones are made in the bone marrow and gradually the population recovers.  Sadly though, because the drugs don't cure the CLL, the cycle repeats itself: some of the lymphocytes again refuse to die and so the system slowly fills up with useless ones once more.  Cue another round of chemotherapy.  The only problem being that often the drugs become less effective with each cycle.  Hence the disease is fatal in the end.  But then so is life...

Having said that, CLL is generally a fairly indolent disease, often appearing late in life and progressing slowly.  In many cases it needs no treatment at all and has no ill effect on the host, the only outward sign of its presence being a slightly higher than normal lymphocyte count revealed in blood tests.  Many people with CLL never feel unwell from it and die of natural causes before the recalcitrant lymphocytes ever cause them a problem.

However, in my case the lymphocyte count was already very high on diagnosis (110 against a normal upper limit of 3.5), so I was treated swiftly with a six-month course of chemotherapy from May to November 2005.

Since then I have had more chemotherapy with different drugs in 2007 and 2008.  All my treatments have been successful and allowed me to carry on as I would without CLL in between courses of chemo.

Then in August 2010 the CLL changed its line of attack.
My lymph nodes swelled up.  Lumps where I shouldn't have lumps.
Tests revealed the disease had changed its genetic profile and become more aggressive.
Henceforth we know that it will only be responsive to one particular drug regime and that it will become less and less responsive to successive treatments, eventually leaving me defenceless against infection, probably within a couple of years.
So my consultant recommended me for a Bone Marrow Transplant.

A Bone Marrow Transplant is the only treatment that can cure CLL completely.
So why not have one as soon as CLL is diagnosed?
Because it's risky.
It can also kill you.
20% die within a year of the transplant.
A further 30% die within two years, generally from a recurrence of the CLL.
And the other 50% survive both the transplant and the disease, and show no symptoms of CLL two years after the transplant.  That passes for a cure, although CLL may still recur after that.
So it's an exciting gamble, but since the alternative is less than two more years, it wasn't really a difficult decision to do it.

And that's where I find myself today.
I'm booked in for admission to the Royal Marsden Hospital in Sutton on Saturday 12th February and the transplant will take place on Wednesday 16th February: my immune system's new birthday.

More on the transplant procedure and the reasons for the blog in future posts.
Not to mention those Spoons in the title.