Tagged Bone marrow

My Perfect Match

thankyou

 

How do you thank someone for saving your life?

Today is seven months exactly since I received a bagful of stem cells from an anonymous donor. Six million of them, via my Hickman line. I lay on a hospital bed, wiped out from a week of chemo and radiotherapy; I’d just had the most intense treatment that can be given to a human being without killing them.

A nurse hovered around, intermittently checking my blood pressure and heartbeat for signs of a reaction. As the cells flowed through the tube and into my veins, the room was permeated with the unmistakable scent of boiled sweetcorn. (I was warned this would happen. For some reason stem cells smell like sweetcorn).

I thought of the stranger who had willingly given his cells to save my life. Who had undergone various blood tests, an ECG, then four days of growth hormone injections to stimulate his cell production – and the side effects of aching bones. Who had sat for four or five hours with a cannula in his arm while his blood was filtered through a machine. For someone he’s never even met.

All I know about my donor is he’s 24 (a year older than me) and a ‘chunky lad’. In two years’ time, I’ll be allowed to meet him if I want – and if he agrees. Until then, the rules say, I can send him an anonymous thank-you message, as long as I’m well enough.

Up until now, I haven’t been well enough. The last few months have been rough. For a while it looked like the transplant hadn’t worked – I hadn’t ‘engrafted’, my bone marrow wasn’t producing blood cells. I was finally discharged from an isolated hospital room 53 days after the transplant, but with no white blood cells, my immunity was non-existent, so I was virtually house-bound. I couldn’t go to public places. I could only see a handful of close friends and relatives. Every couple of days I had to go to hospital to have blood and platelet transfusions, since my body wasn’t making enough to keep me going. I had to inject myself daily in the thigh with growth hormone factor.

In the end the doctors asked Chunky Lad for a few more cells, and he obliged. I received a top-up in autumn – though by this time my lazy marrow seemed to have woken up anyway, and was beginning to produce cells. Whatever the reason, I could finally escape the transfusion room.

But then there was the Graft versus Host Disease. Tell people you have cancer and you get some well-deserved sympathy. Tell people you’ve got Graft versus Host Disease and you get a blank expression. GVHD occurs when the donor’s cells recognise yours as foreign and launch their assault, usually attacking the liver, the digestive system – or in my case, the skin. For months now I’ve suffered from constant itching and rash. My skin got so dry that the soles of my feet cracked and bled; walking became painful. The surface of my whole body was splintering off like dandruff – I couldn’t move without shedding a flurry of white flakes. No amount of ointments or creams seemed to have an effect, and I was forced to take high doses of steroids, which weakened my muscles, and kept me awake at night.

It’s still a daily struggle, and I have to spend several hours each day applying creams just to keep the itching at bay. But now I’m having specialist photopheresis treatment at a dermatology clinic, where I’m plugged into a machine for a couple of days a fortnight. It’s a pain having a Hickman line, and the treatment will carry on for at least six more months. But the GVHD seems to be slowly improving a little. And now his cells are attacking mine a bit less, I think it’s time I wrote Chunky Lad a thank-you note.

The only question is what to say. To this total stranger whose blood is now flowing through my veins. To this person I’ve never met, who by a complete accident of chance, happened to have the same HLA tissue type as me – closer to me than my own sister, who, like the majority of siblings, was not a match.

With all the complications that arise from a transplant, it’s hard not to feel downcast, at times. Sometimes the future does look bleak. But I remind myself that it’s because of my donor that I can even contemplate a future.

He’s probably saved my life. And there’s no way I can thank him enough.

 

 

Cell-Bye Date (part III)

Robert Graves

‘…The unendurable moment struck –

The inward scream, the duty to run mad.’

– Robert Graves, Recalling War

possible2‘”I’ve had such a curious dream!” said Alice, and she told her sister, as well as she could remember them, all these strange Adventures of hers.’

 – Lewis Carroll, Alice in Wonderland

 

They called it shell-shock in the First World War. At first the doctors were puzzled; these were men who were alive – they had survived, left the Front for good, come back as heroes. And still they were paralysed by fear; stammering, unable to speak. Many of them had suffered no injury to the brain, yet they had the kind of symptoms which accompany a wound to the head: dizziness, hearing voices, trembling. Memory loss.

I’ve mentioned the dangers of a transplant. I’ve said how the conditioning treatment – the high-dose chemo and the radiation they give you first, to delete your own stem cells and make way for the donor’s – inflicts a similar kind of devastation to the organs as chemical warfare, as nuclear radiation. Chemotherapy was, incidentally, conceived in the wake of the First World War, when veterans were found to have reduced bone marrows and lymph nodes after exposure to mustard gas.

I went into the transplant with the grim determination of a young conscript. I knew it could kill me. I knew that patients were frequently rushed to intensive care. I knew, as well, that there was no alternative. I signed the consent form.

I managed to develop all the complications I’d heard about, and a few more besides. I contracted a form of pneumonia, which left me feverish, with a violent cough. My liver started failing. My heart rate ran dangerously high, my blood pressure rocketed. Then the Graft-versus-Host-Disease set in; as the donor’s cells recognised my own as foreign, they began to attack – my skin flared up and I suffered a bout of gastro-enteritis.

Worst of all was the mucositis. I had been warned about it beforehand. The mucous membrane, from the oral cavity to the entire digestive system, becomes inflamed; the tongue swells up and develops painful ulcers, the gums bleed.

But nothing could have prepared me for the nightmare which spiralled into each oncoming day, or the ghost train ride which arrived in the evenings, without fail, and shuttled along every night.

At first you notice a slight soreness in your throat, the pills refuse to go down. Then it becomes impossible to eat or drink. A small sip of water is unbearable. Even swallowing your own saliva delivers a jolt of agony. Most patients are fed through a tube in their nose; for some reason, the nurses didn’t manage to fit one through mine, so all my medications, my daily calories and nutrition were transfused through my Hickman line, the rubber tube which had been inserted into a vein under my collar bone.

The pain is like nothing I’ve ever experienced. At night I was lucky if I slept half an hour. I would try to sleep sitting up; my air-ways were so constricted that I struggled to breathe when I lay down, spluttering and coughing. My oxygen levels would drop and the nurses would fit me with a mask.

I used to start retching uncontrollably, nauseated and overwhelmed with hunger pangs. I was starving, I was parched with thirst. But I was unable to ingest anything. For more than two weeks I could not brush my teeth. I could not speak. I could barely move my lips more than a couple of millimetres. I filled three whole notebooks and masses of pages of Word documents on my laptop, as I had to communicate somehow with the doctors and nurses, with my parents.

I read them over now; it’s like seeing the words of another person. Usually I remember everything; details of a conversation I had with a friend years ago. The first time I looked back over the pages of my own handwriting, from just a month earlier, I didn’t recognise them at all. There are the parts that seem plausible enough, that I can imagine having written – the requests for ice cubes to numb the aching, for anti-nausea injections in my stomach, for the nurses to increase my morphine dose – I was connected to an intravenous drip at all hours to reduce the pain, unplugged only for a few minutes each day to have a shower.

Then there is the odd sentence which seems to come, out of nowhere, and I don’t know whether to laugh, or gasp, or how to breathe, because this was a few months ago only, and the words are mine;  I know and I can’t, still, place them in my mind’s eye, I can’t see them as anything other than the progeny of a sick joke, some kind of hyperbolic underworld.

‘I’m scared,’ I had written to my dad, at one point. ‘Don’t let them lie to me. Am I getting near the end?’

Cell-Bye Date (part II)

 

nolan

A stem cell transplant is supposed to save your life, but there are times when you don’t feel alive. First you’re hit with high-dose chemo and radiotherapy – total body irradiation, that is: lying in a kind of human fish tank while a machine shoots you with waves of 14.4 Grays. It’s like you’re a computer being fitted with a new hard drive; before they can install the healthy bone marrow, they want to demolish all trace of your own errant cells. The whole process, I’ve been told, inflicts the same kind of destruction on the body as a nuclear attack.

The first bombshell came for me, though, when the question of donors arose. My sister had already been tested and found incompatible (siblings are only a match in around 25% of cases).

Then came the uncertainty, and the sense of powerlessness, as the search for an unrelated donor began. All I could do was wait and hope that a match would be found. The consultant warned that it might not be possible due to my ‘mixed background.’

I’d never thought of myself as mixed, but it turns out that having a Jewish-Hungarian father and a Croatian mother is far from ideal. In fact, the chances of finding a match with a Jewish background, I recently discovered, are only around 40%. (‘As though being persecuted down the ages wasn’t enough,’ my dad lamented).

Donors are matched according to cell tissue, of which there are millions of different types. I was astonishingly lucky to be found a 10/10 match in a matter of weeks.

But not everyone is as fortunate as I was. Some people go for years enduring gruelling rounds of chemotherapy while they wait for a suitable donor to appear on the register. Others don’t survive.

The more people join the register, the better the chances of finding a match for everyone with a blood cancer. All it takes to sign up is a bit of saliva in a sample tube.

Cell-Bye Date (part I)

Elizabeth I

Elizabeth I famously claimed to have the heart and stomach of a man.

I don’t have the Spanish Armada to contend with, but I do have a brand-new male bone marrow, courtesy of a 24 year-old ‘chunky lad’ who was generous enough to give away six million of his cells to a complete stranger.

Beyond his age and his robust stature, I haven’t been told anything about my donor. I’ve never met him, and in all likelihood, I’ll probably never get the chance. And yet he may well have saved my life. Although I went into remission after the first cycle of chemotherapy, the doctors warned me that without a stem cell transplant, there was a 60% chance of the leukaemia returning with a vengeance – more aggressive and less treatable.

But that’s not to say it’s been an easy ride. As the consultant, world-weary, opined today: ‘You didn’t have to go and develop all the complications we told you about. The booklet was just to scare you. There’s no need to suffer from every single side effect.’

‘I haven’t,’ I countered. ‘I mean, death, for one. I’m still alive, so far.’

On the consent form I had to sign before the treatment, the transplant coordinator had saved the word until last on the list, under ‘Serious or frequently occurring risks’.

‘Some patients don’t want to know their chances, some want a percentage,’ she’d told me hurriedly. She didn’t wait for a reply. ‘You’re young. I’d say there’s only a 10-12% mortality risk in your case.’

Stem cells are so often talked about these days in tones of mystified awe, and they’re fast becoming seen as a magical panacea for all manner of diseases and conditions. But I think it’s fair to say that many of us – including myself, pre-leukaemia – have a pretty hazy idea of what a bone marrow or stem cell transplant actually involves, including all the struggles along the way.

Aside from the agonising wait for a suitable donor, the sheer force of the treatment itself is beyond anything I could have imagined. Or, as my consultant remarked with a smile, when I enquired about the radiotherapy: ‘We use a dose that is lethal. In military terms, it’s very close to the atomic bomb.’

The waiting game

One pill makes you larger
And one pill makes you small
And the ones that mother gives you
Don’t do anything at all
Go ask Alice
When she’s ten feet tall

– Jefferson Airplane, White Rabbit

white rabbit

My first round of chemo is over. I should be going home for at least a few days’ respite before I get the second batch.

Except I’m still here. In the same room that I was admitted to five weeks ago. At the moment I’m trapped in the looking glass, playing the waiting game. Waiting for the white blood cells and the neutrophils to get their skates on and move up a few notches.

The chemo killed off all the unruly cells, and left me with nothing for a while. As I was given such a high dose, they’re being a bit slow to recover.

I just wish they’d hurry up a bit. At the moment the old neutrophils seem to be oscillating between 0 and 0.1. They went up to 0.1 for a day, then back down to 0 the next. I need 0.5 before the powers-that-be can unleash me on all the glorious bacteria and infection of the outside world.

The consultant was typically benevolent on the wards round yesterday: ‘We may possibly consider letting you out at 0.4. If you’re practically climbing up the walls with frustration by that stage.’

Luckily there’s all the magic of wondrous pills and concoctions to help me on my way. The nurse on duty (one of my favourites) popped in yesterday brandishing a particularly large syringe.

‘You can either have it in your leg, your arm, or your tummy! Your choice.’

‘What is it?’ I asked.

‘Oh just the growth hormone injection! Haven’t they told you?’

As it turns out they hadn’t.

‘It just gives your bone marrow a good kick up the backside and a push to get moving and producing cells. Healthy cells! Now lean back and breathe out.’

Unlike Alice I didn’t cry. Nor did I end up over nine feet high, or collide with any ceilings. I just got quite a bit of pain in my lower back. Which means it’s working, apparently. The white blood cells were 0.3 today (up from 0.2 yesterday) and the neutrophils are back at 0.1.

So it’s just a matter of waiting now. It’s okay though, I’m sure they’ll be up soon (I hear Pippa’s praying for me.)

Why me? Why not.

I’m writing because I have a white blood cell count of 0.

Because for a month now I have been confined to a sterilised room, and on the rare occasions I leave it I have to wear a mask, as the slightest cough of a passer-by could result in pneumonia for me.

Because for that same reason I’m scared to let my friends visit. Even my parents are terrified to touch me.

I’m writing because I feel weaker every day. I can’t walk a short distance without leaning on my dad; I have to lever myself up every time I crouch down to open a drawer.  After dimly imagining my hair might stay intact (I’ve been lucky so far) it’s now falling out in large handfuls. And I’m scared the ability to write, if I don’t, like so much else, will slip away from me.

I’m writing because now – as I’m loaded with drugs bearing oddly alluring names, which leave me barely able at times to remember my own – now is not the time to write and yet now is the time more than ever.

Because somewhere at the back of my mind, somewhere way beneath the why-me is the why-not; under the cheery post-chemo gleam is the unvoiceable, lingering sense that my time left to write isn’t as long as I would hope it to be.

Last week on the wards the new consultant hit me with it. He isn’t the most rhetorically-gifted man.

‘Well, this is something that looks like a Bad Thing,’ he said.

I wish, at least, he’d said ‘less promising’, or ‘less encouraging’, or ‘inauspicious’. Dress it up for me a bit, embellish round the edges.

After a lot of fumbling and prevarication – and a lot more repetition of ‘looks like a Bad Thing – but possibly isn’t!’ – it came down to this:

‘You have a cytogenetic abnormality. Your chromosome 21 makes too many copies of the AML1 gene. And while we don’t really have anything in the way of statistics – it looks like patients with your specific brand of leukaemia fare worse than others. So we’re giving you a higher dose of chemo just to make sure!’

I’m such a lucky girl.

I thought it was already rare enough for my white blood cells to go off on their merry way in the way they have – only 400 adults in the UK are diagnosed with ALL (acute lymphoblastic leukaemia) every year. But apparently my little chromosomic idiosyncrasy is limited to 4-5 in the country, according to the consultant. So it turns out I really am one in a million. (Or one in 15 million, if you want to split hairs).

And I have a pink lunchbox with my name on it. Well, it’s my drugs box, but it looks like a lunchbox, and it’s Alice-in-Wonderland-fallen-down-the-rabbit-hole-brilliant. HANNAH PARTOS stamped on one side in capitals and CYTOTOXIC!!! on the other.

I suppose it’ll have to do if that teddy from Pippa doesn’t arrive soon.

Scratching on the blank slate

sepia

‘You know what you should do,’ the consultant haematologist smiled, ‘you should write a Blog.’ He looked very proud.

Of course I nodded gamely. No point arguing. The sun was shining, the registrars and nurses poised with their clipboards on the daily round, everyone beaming in my direction. The cheeriest chemo patient on the ward. (Or so I’ve been told. Unless they tell everyone that).

‘You could talk about your experiences with the treatment – you’d have so much to say.’ The registrars and nurses seemed to nod as one.

‘Great – I’ll do it,’ I probably said. I can’t remember. This was a couple of weeks ago. All I know is that I hadn’t the least intention of following his advice.

I couldn’t think of a worse idea.

I knew exactly what he was after – the confessional tone, the grimly ‘gritty’ subheadings. Losing my hair, losing my strength, my fertility – all the delicious side-effects which accompany a cocktail of drugs pumped through your veins.

Basically, the kind of self-aggrandising narrative that friends and relatives would dutifully read and comment and re-tweet, out of a dogged sympathy for my Resolute Bravery in the Face of Adversity.

Writing about leukaemia just seems like a cheap shot. Inevitably self-pitying, introspective – and somehow insufficient. Is a serious disease enough to turn you into a scintillating object of interest? Are you blog-worthy just because your bone marrow is misbehaving and your chromosomes are really messed up?

On top of that, my reservation with blogs has always been that it’s too late now and the only ones people actually read were all sparked off around a mythical golden age of the blogosphere explosion circa 2007.

On the other hand though, blog success is probably worse than failure. I’ve already received one or two saccharine messages praising my Inner Strength – and suddenly an email addressed ‘Dear Beautiful Hannah’ from a usually austere family friend got me a little bit scared. What next, a card from the Duchess of Cambridge telling me I’m an inspiration? (A teddy from Pippa?*)

But I’m getting ahead of myself. This is all specious, because here I am with my first blog entry.  After splotting out all these doubts and misgivings, why am I still writing?

*This bit is disingenuous. Nothing would make me happier.