The Gift of CLL

CLL

CLL as a Gift.
A strange way to regard a disease, you might think.
And so did I before it happened to me and I began this latest stage in my journey of Self-Discovery, for which CLL was the catalyst.

My reactions six years ago to the diagnosis of a potentially fatal disease were mixed.  Some obvious, some less so perhaps.
Some self-pity, some anger tantrums certainly.  A bit of 'Why me?'
But also a touch of feeling Special: not everyone gets CLL, you know.
I used to walk down the street, looking at other people and thinking "If only you knew that I have a Terminal Disease, you'd treat me with a bit of Respect!"  Daft, eh?
I used to fantasise about being mugged and fighting back, saying "I've got cancer, so I'm going to die anyway, so it doesn't matter what you do to me!"  Blimey, the weird things the human mind is capable of thinking...

And then, with a more mature realisation of the fact that my time on this planet might be more limited than I'd assumed, came a greater appreciation both of Life itself and of what I had right now.  We spend so much of our lives, or I do anyway, taking what we have entirely for granted and bemoaning the absence of what we don't have.  The effect of the CLL diagnosis was to redress this balance for me somewhat.  I guess this is why Buddhists are encouraged to meditate on Death.  A Conscious Awareness of the Transience of Life helps us to be more appreciative of its value.

In my more Reflective Moments I was thus led to a Re-evaluation of my life, Past, Present and Future.

Looking at my Past, I realised how lucky I'd been, and how varied and interesting my life had been thus far.  I've led a life of great privilege materially, compared with 99% of Human Beans on this Earth, lived in different countries, travelled widely, been married (twice!), had children, siblings, cousins, nephews, nieces and gathered a host of good friends from every Episode of my life so far.  It's been a very Rich, Absorbing and Exciting (sometimes perhaps rather too exciting) Ride.



Cleobis and Biton

If I were to die tomorrow (which I have no intention of doing, I assure you), even that old miseryguts Solon might have trouble denying that I'd had a Happy Life; or, as he might have said if they'd invented cricket in Greece in the Sixth Century BC, a Good Innings.  Solon, as you all remember, was asked by Croesus (as in 'rich as Croesus'; yes, that Croesus), as he stroked his golden staters (or whatever they used for dosh in ancient Lydia), just whom did he, Solon, consider to be the happiest man in the world.  Croesus clearly (and smugly) expected the reply "Oh gosh, it has to be you, Croesus, me old olive; just look at all your money, power etc" and only wanted it confirmed by Solon because the latter had the reputation of being a Wise Man.  However, Solon was also a Spoilsport and wouldn't play Croesus's game.  So he mentioned a bloke that nobody had ever heard of called Tellus, purely because he'd had children and grandchildren and died heroically in battle.  Croesus, clearly peeved, ignored this insult and asked "So who's the second happiest then?"  A slightly desperate question, one feels.  And bugger me if Solon still doesn't relent, but launches instead into a long and boring story about a couple of thick Greek rugger buggers called Cleobis and Biton who were pressed into service by their (evidently domineering) mother when she couldn't find the oxen for the oxcart and needed to get to the temple quickly for a service (a religious service, not a 5000 mile service for the oxcart, you understand).  So C & B dragged their Nagging Mater in said oxcart all the way to the temple, despite only having two and a half arms between them (see pic).  Whereupon  they promptly fell over and turned their toes up.  "So," said Solon, as if this proved his point somehow, "call no man happy until he is dead."  Croesus was not unnaturally getting quite cross now, according to Herodotus (for, as you recall, it is he who tells the story) and must have been thinking "Eh??? And who exactly thinks you're wise?"  So imagine his reaction when Solon confirmed what he must have been suspecting by now, that he didn't even come third in the Happiness Stakes.  At which point Croesus apparently gave up asking and called for the Dancing Girls instead.  Well, you would, wouldn't you?

However, it all had a Happy Ending because when, at a later date, Croesus had been defeated, captured and stuck on top of a pyre to be burnt alive by Cyrus of Persia, he realised (a bit late) that Solon might have had a point and called out his name three times.  At which, Cyrus (being a bit deaf) asked what he'd said. Croesus thereupon told him the story of Solon and the ridiculous Happiness Contest.  Cyrus sympathised mightily with Croesus and ordered his slaves to put out the flames and get him down from the pyre and they all lived happily ever after.  Or something.  But I digress.  Rather too lengthily perhaps.

And so from the Past to the Present (as opposed to Gift).
The Shadow of the possible consequences of CLL has made me so much more appreciative of what I have now.  I have much more materially than I really need, I'm ashamed to say. I have a Beautiful, Wise (and High-Earning) Wife, whose abundance of Common Sense so perfectly complements my lack of it. And a Handsome, Happy and Loving son. Then what better illustration could there be of the Wealth I enjoy than the comments on this blog, both on and off it? So many excellent friends sending messages of support and love.  These are the most important things I have, but there is much more of course.
With all this Now - right Now - how could I not feel Blessed?

Greener Grass?

If we stop to think, we all have so much, but it is Human Nature to take what we have for granted and to want what we do not have.  And maybe not just Human nature (see pic).   I am one for whom the grass has always seemed greener elsewhere. So much of our Suffering and Dissatisfaction is caused simply by our state of mind, our Attitude. CLL made me stop and think.  And now I try and encourage myself, with occasional success, to look at Reality with unblinkered eyes, to count my Blessings, not what I think I lack.  This I owe to CLL.

Since this post is already long enough, and because the Future never comes (since by the time it does, after all, it's the Present), appropriately I shall leave the Re-evaluation of my Future, which CLL inspired, for a future post.

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....

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.