The Legacy of Leukaemia
"Having leukaemia is one thing. Surviving it is another thing."
You think you're over it and you've let it go and then boom! You're right back there, in that place where it's you and this entity that you can't see or hear or touch but you can feel it killing you from the inside out.
I was fourteen when I was first diagnosed with leukaemia. Acute Lymphoblastic leukaemia. I had over 90% leukaemic cells in my body and, let me tell you, nothing feels as bad as leukaemia.
Nothing – or at least nothing physical that I've ever experienced. Even chemotherapy, in all its grueling glory, paled beside the effects of rampant leukaemia.
I couldn't sleep. I was eating and eating and drinking and drinking and still I was losing weight and getting thirstier. I hadn't pooed in well over a week and the pain from constipation was all I could focus on. I was so cold I used to lie as near to the fire as I could without getting burned, my Dad yelling at me that it wasn't that cold, to stay back from the fire. My normal walk home from school, about a mile, suddenly seemed insurmountable. I started cadging for lifts, once calling into my father's office and begging for a lift home. He shooed me away, something he remembers with regret. But who would've guessed what was going on?
I was a healthy, very tall, very active 14 year old girl with notions aplenty. I'd been training with the Irish Basketball Squad and was in the peak of fitness. Overnight, it seemed, I suddenly started dying. It was like my entire body was shutting down. My bowels didn't work, my muscles wouldn't work, my voice was hoarse and wispy; I couldn't do any of the things I normally did. I couldn't run during basketball, I couldn't face walking home, I was so thirsty all the time and, dear God, I was so, so cold. I remember the cold probably most, and the pain of haemorrhoids brought on by severe constipation. My Aunt, who'd just had a baby, brought me all these different haemorrhoid creams, explaining which were best, and I remember looking at the colourful bag of strangeness wondering what was going on.
However, I was too tired to really care. I just wanted to sleep and be warm and eat sweets and take painkillers for the awful pain. But my Mum knew better, took me to our family GP who diagnosed an ENT infection and tried to send us on our way with seven days of antibiotics. My Mum insisted on a blood test before we went and the Doctor called us a day later. I remember Mum and I arguing in the waiting room about me “being dramatic” as I had four coats on and a hat, with my hood up, plus gloves, and she was mortified bringing me into the Doctor's – treated with the same reverence as going to Mass - looking like I was a homeless orphan.
I giggle thinking about it now... nobody understood how cold I was. My nose bled spontaneously, with no warning, and often wouldn't stop for over an hour. During one basketball match, I had to be taken off with another nosebleed and I remember my teammates bitching in that way teenage girls do so well, that I was so dramatic and that there was nothing wrong with me. I was diagnosed two days after that nosebleed.
Treatment began instantly in Crumlin Hospital, where I was relieved to be free of the pain and rather excited by all the drama. There was enormous relief to be allowed to take to a bed and have people take over and make me feel better. Indeed, the first few days of chemo made me stop feeling like I was dying and just being poisoned instead – there's a very pleasant difference.
I was almost 17 when I finished my oral meds and was free of chemo and the dreaded steroids. Steroids were so much harder to tolerate than chemo tablets. They affected me enormously, mentally and physically, and while this is great from a we're-trying-to-save-your-life standpoint, for a teenage girl they altered my moods and my weight went up. I would take them on a Monday, start feeling them on Wednesday night, wake up with the most glowing complexion on Thursday morning (they're potent anti-inflammatories, which has its good points) and be in tears after school on Thursday night, for no discernible reason.
Thursday night I'd be up around 4am, eating Rice Krispies because of the hunger – steroid hunger is insatiable. You literally eat around the clock, gaining weight by the second and losing the mental holiday sleep grants you. It wasn't unusual to find me sobbing into my bowl of cereal into the wee hours of the night, so tired and so ill, but unable to concentrate on anything except eating.
I turned 17 and experienced a summer before college that was excitingly perfect. I went into college in September '04, studying Dietetics, even though I still wanted to be an actor. By that stage, though, I was a tad confused about life and getting what you want and chasing dreams and wasn't sure I could still be a star with such short fuzzy hair.
I had a great year in college, kissing boys, drinking, dancing and learning. I also became aware for the first time that all was not right with my eating, a fact made so much worse by studying a four- year degree in, basically, eating.
I went on holiday to Florida after my summer exams, and found a lump in my breast while watching “That's So Raven” with my sisters. I ran to my parent's room, and my mum and I stood in the hotel living room with her two fingers rather expertly feeling my rather expansive breast, while I stared at the room full of bags and suitcases new purchases and indications of abundance and rightness until Mum slowly agreed that yes, there was a lump, but all the women in our family had lumpy breasts and we'd see the Doctor tomorrow but it'd be fine, nothing to worry about. I went to bed that night with the sense of trepidation I've come to know so well in my life spreading all over me. I felt different, older, sadder, and wiser even then sliding into the bed beside my sisters - that I'd left our sisterly coven once again, through no choice of my own. Life just wouldn't let up and let me be normal.
That night there was a fire alarm drill and we all had to evacuate the hotel in our PJs. I took this as a bad sign. I got up early to write by the poolside, bartering with God that if he made sure the tumour was a harmless lump I'd go to Mass everyday, stop cursing and fighting with my Mum. I still have these promises to God stashed away somewhere, written on hotel beer mats and printed napkins and stickie papers.
Two weeks later I'm back in the hospital with life crushed everywhere and no reprieve in sight. My cowboy boots, bought the day of my second diagnosis, are by my side in a carrier bag and I can't hear what the Doctor is saying, so I imagine how cool I'll look being cancer skinny in my new cowboy boots and American wardrobe.
I remember in the hospital being told the tumour was leukaemic. I remember my Mum falling and the nurse rushing to her side and I recall my first thought of relapse was the giddy thought of being skinny again - I had bought Armani jeans on the aforementioned trip to Florida and I was carrying a bit of holiday weight. Isn't that mental? Or maybe it's the brain's unparalleled smartness in protecting you from issues that are a bit too big for you to handle.
Quickly I demanded the Doctor to step outside the room, take me into another consultation room and proceeded to get very angry at why he told me and my mum together, that I was 18 and he'd no right, I should have been told alone and had the chance to tell my family myself. I then asked him if I was going to die. This Doctor, who was a favourite and had known me for years, answered that he didn't know yet. I stared at him in scornful disbelief. What kind of answer was that? I wasn't looking for the truth; I was waiting to be told this was nothing – a blip. In a way that was the worst answer he could’ve given. Emotions were straining at the corners of his mouth, his quietness unnerving me, disarming me. We stared at each other for a few seconds, and then at each other's feet. Suddenly there was little else to say.
Just as there really aren't words to describe the thorough devastation that relapse brings. When you're diagnosed, the energy of the hospital staff and the quick induction treatment bring you along with them so that you don't focus on much else, only getting through each day and keeping focused on the superstar you'll be when you grow up. Relapse, however, is not just a different ball game, it's just not a game at all. It didn't affect me much physically, funnily enough (I relapsed in a very unusual way and felt completely fine with a tumour growing in my right breast – sneaky as hell) but it broke me in a way my first time on the merry-go-round hadn't. It broke me emotionally, psychologically and spiritually. I lost my faith in everything.
And I can remember the moment too, when my over-protected childishness weeped out of me into the atmosphere, leaving me bitter and so, so alone. I was sitting on the side of my bed, wearing a yellow tee-shirt I had bought in Florida and staring listlessly at the bandages on my chest where my second Hickman line had been reinserted in preparation for the chemo I'd be beginning in a few days. My friends were due to pick me up and go to the beach for the day with beer and barbecue and I knew I had to make the most of feeling well and enjoy some time before chemo. And sitting on that bed, staring at my bookcase as my world looked yellow – my tee, my hair, the yellow sun cruelly beaming in the windows, mocking me with it's happiness – I knew I was on my own this time. I was by now a strapping 6ft, busty 18 year old with a year in college under her belt and a penchant for bad boys.
There was no glossing over relapse the way I had kept my leukaemia history hidden at college. It was real, it was back and statistically my chances were dodgy at best. I knew at that moment my life was never going to be the same again and I felt the deepest-seated grief at the hand I was dealt. A grief that made me nauseous, that made me cold, that made me empty.
Surely grief is the hardest of emotions to live with. Once you taste it, it lives in your blood, never eradicated but lying dormant, like a virus you are host to. You don't get over grief. You live with it and learn to recognise the signs of its waves rising up in you, and you learn to find solid structures to hold on to when the waves threaten to overthrow you.The fear that settled in over the course of those sunny days, the preoccupation with my weight and keeping my hair, the obsessive controlling of information that was leaked to friends and family meant that I didn't quite know who I was becoming.
I felt closed up, distant, protected – grief brings a lovely release of caring about anything. I comforted my family and friends and co-workers, chanting my mantra - “I did it once, I'll do it again”. I sat on my father's knee in the good sitting room where he was holed up for days on end, sobbing uncontrollably into a crumpled tissue - “I just can't look at you, Karen” - and I promised him I was going to live. I remember saying this, feeling very strong and but also very distraught at that moment, that if leukaemia was a person I'd kill it with my bare hands, so angry was I at the pain and despair it had brought to my loved ones.
I believed that it was me, and me alone, who should have to carry this heavy cross. I wanted it to be my burden and no one else's. I wanted to hide my internal flaw from people I looked up too - my new kind-of boyfriend, college friends, cool people around me. I didn't want to watch my hair fall out again and stand idly by while my body was broken down in the name of curing me. I didn't want help with coping, I didn't want to talk to chaplains and I didn't want bedside company.
I wanted to comfort eat, hide away and watch Britney's show Chaotic on MTV. Which is pretty much how I spent my months in an isolation room in St. James's Hospital. I'd buy fashion magazines and plan to-do lists of how beautiful I would make myself when I was better and had my hair back.
The sheer superficiality of my day-time thoughts (food and weight, weight and food) were a relief to the thoughts that crept in once lights went off and the nurses crowded to their station. I find it hard to explain The Cancer Fear. I don't think anyone who's never had cancer could fathom it, and I'll go one step further and say that even those who have had cancer may not know the fear that experiencing a relapse brings. It pervades every cell in your body. You live in a world of earthquakes and floods and monsters like the ones in I am Legend or War of the World and you can't ever rest your mind because, if you do, you might miss something and die because doctors miss things all the time, it was me who had found my lump and had been told it was a benevolent little fibroid. I trusted no one now. Not doctors, not my body, not myself. I hated my family and friends for not understanding, for having no inkling of the suffering that seethed beneath my warrior exterior. A lump, a bump, an infection, a rash, bowel changes, appetite changes. I was on high alert, all the time. It was me and the fear, just the two of us, and nobody understood.
I was so afraid of the body I lived in, so convinced was I that it was trying to kill me. This was the feeling that often made me just want to die, rendering me passively suicidal. I vacillated from hating it in it's scarred, steroidish, sickly flabbiness to feeling terribly sorry for it, kissing my arms and forearms, using mammy language to calm me down before a procedure - “sssh pet you're all right now, sssh, it'll be over in a second and I'll make ya a hot water bottle” - and telling it how sorry I was that we had to get another lumbar puncture tomorrow under local anaesthetic from a really junior Doctor who probably never had done a LP before and, joy to the world, was going to initiate himself on me and my scarred, scared lower back.
I didn't see myself naked for about 10 years. I didn't touch myself in any way save showering, and even that was more patting myself than anything else. When I had a line in (Hickman Line) I wasn't supposed to shower so when I bathed I'd drape my dressing gown over the full length mirror so I wouldn't see my reflection and get upset. Underneath it all, I couldn't forgive myself for the fact the last time I touched myself I found a cancerous yoke in my boob and no way was I risking that again.
I made the conscious, angry decision to risk dying of metastases all over my body rather than be vigilant and check myself for lumps. I knew I'd never live through finding another one. That lump had destroyed everything and I had no fight in me left. I was beaten.
But by now I was fighting a different battle.
My cancer was in remission almost immediately so, with that taken care of, all the psycho-emotional issues reigned supreme. I was an almighty binge-eater – an eating disorder that messes you up and spits you out leaving only a shell of you. I drank too much; with weekly admonishing phone calls from my hospital complaining of raised liver enzymes again and again. I was still on oral chemo meds and wasn't meant to be drinking. It fell on deaf ears. I didn't care, why couldn't anyone see that? I partied hard at college and pretended I had hair extensions for the craic after a bad haircut.
Looking back, everyone knew I'd been sick. I was so ashamed of my fall from strength into a world of disability and vulnerability, it seemed so at odds with who I felt I was, that I firmly decided to reject every aspect of leukaemia and pretend it never happened. Depending on how you look at things, you could say I succeeded in that.
But my God, the price was huge. Not facing up to my reality and vulnerability meant I lost so much of myself in my avoidance of the truth. I really didn't know who the sick, heavy girl in the mirror was. I lied to myself and everyone around me because that was my truth at the time. That was all I could stomach.
I had gone straight back to college to become a dietitian and I wanted to forget about who I'd been for my year out. I hated everything. Myself, my body and my life. The situation I found myself in – trapped inside a cancer-happy body when I wanted to go out into the world and make shakes – was completely surreal and eons away from what I had expected from life. The realisation that this was not just a page in my life story but the whole book knocked the air out of my lungs. And so I continued trying to be like everyone else, drinking, partying, going to Oxygen and buying ill-fitting outfits from Penney's.
When all was said and done, and I'd been living my life outside of chemo, it took me years to realise that being “kinda cured” (no-one was about to jinx me by saying I was cured) were one thing, but if I ever wanted to be at peace, I also needed to heal. The mind that was tenacious and defiant enough to help me survive against the odds was also a gangster, keeping me locked in a spiral of self-hate, shame and worthlessness.
To be honest, the fight for my mind has been every bit as difficult as the fight for my body – and I do not say that lightly. Five years of chemotherapy is no mean feat and perhaps our memory softens with age, but my struggle to regain hope has by far been my biggest battle. The mind can be as much a demon as anything else.
In my efforts to regain a sense of worth, purpose and peace I have had to face up to every one of those monsters in my mind, that are there to protect me even though I don't need high security protecting any more. I'm okay with the truth now. I can handle my history and I can live with my legacy. I'm not afraid of relapsing again. However, I am afraid of losing my peace and I work hard at maintaining some semblance of serenity. Because this is where strength can be found, in emotional and spiritual wellbeing. Leukaemia left me depleted, from top to toe, in every sense of the word - physically, mentally, emotionally, psychologically, spiritually defunct.
This is what no one talks about.
I felt so alone and so scared. I felt so trapped inside a body devoid of kindness or justice, a body that just wouldn't stop messing up. I wanted out of it so bad, to be someone else who didn't live in a prison made of bones and skin and rotten foundations. The pain of who I'd turned out to be, amidst all my lofty aspirations, was like an anthrax-coated bomb that took the place of my heart.
I couldn't face up to it and accept it the way books tell you. I couldn't stomach the fact that this was my life and it was incomparable to anyone else's life. I couldn't believe this had actually happened to me, who always felt so safe cushioned in between the pillows of my dreams. In one way I loved the drama, the infamy, the sensationalism of it all. This was easier to deal with than the reality of it.
Trying to accept the fact I had a decent chance of dying from a blood cancer was anathema to me. I was strong, I was special, and I was going to do big things with my life. Suddenly all that was hoped for me was to be cured. I had been proud of my strength and healthiness, playing Pocahontas in the fields and climbing trees as my alter ego acrobat, Krazy Karen. Now my body was the enemy, to be tortured like an enemy of the state and I simply could not fathom why this had happened.
The truth is, we can't let fear dictate to us. We can't pretend we don't need to feel like there is a purpose for us on this earth. We need to be aware that there is a power, a strength that lies in us all that is there when we need it. We need balance, to show us that for every dark side, there is a light side. We cannot be afraid and we cannot hate. We cannot hate ourselves or our expression here on earth, because doing so is the moment you die inside. We need to cherish every thing we are, even our perceived disgustingness because you cannot make lasting changes from a position of hate.
If I learned anything, I learned this. Love is what works, acceptance is what works, and trusting in something bigger than you also works. We don't know why some people die from leukaemia and some people don't. I don't know if we'll ever know. The issue is not being afraid of disease, but in making yourself as strong as possible so that you can handle whatever life throws at you and then trusting that each person has a different path. We might not like our paths but we need to accept them and trust that somebody somewhere, the man above, whoever he is, knows what he is doing. Then we hope our path isn't over yet and we get more time in this incredible existence we call life. And life is incredible - its highs and lows, its injustice and its magic are what we live for. It isn't easy facing reality like this but neither is living the alternative.
Consumed with fear and ego and living your life by someone else's standards is how you spend your life dying. Far better to be really, truly, courageously, flawfully alive than inauthentically existing each day, keeping the status quo and hiding from the truths hidden deep in the myriads of your mind.
Whatever you are, be it and be it fully. Own every square inch of it - even if you don't like it. You don't need to like it to accept it. I urge everyone to fight for their mind, for their peace, for their truth. Once you own your mind you own your experience of life. It's the hardest but most important journey you can ever take and, when you think of it like that, what have you got to lose?
© Karen Connell