My liver is on the right hand side of the body, tucked under the ribcage. It also juts out into my upper abdominal cavity, because it is abnormally large, and the right lobe is filled with tumours. The left lobe, however, is normal, and I love my left lobe. I used to think my liver was in my lower back, near the kidneys, which is embarrassing to admit.
My liver is an enigma. I stare at images of the organ on computer screens and film, from the piles of scans I have had, forming out the shape and the size of the tumours as they have grown and shrunk over the last seven months. The images are grey and murky. My body is a wonderland, newly charted. It is a spectacle. The first specialist who saw them was excited, and declared they were spectacular, noting on the form for my second MRI that they were spectacular lesions. I posted a picture of the resulting scan on Instagram, and put a filter on it.
Up to 70 percent of my liver can be removed without the liver failing, according to a random website I read about liver surgery that seemed to be legitimate enough for me to grab on and believe in that number. This is touch and go when the amount removed starts getting close to 70 percent. If the remainder of the liver is impaired too severely though, there is a chance that it will fail, and the patient will die. I am losing my entire right lobe of my liver, which is close to the 70 percent mark. My liver surgeon tells me each time I see him that the operation is risky, but he has a warm, open face. He is enthusiastic about my resection, because it is difficult. There is one tumour located in the middle of a cluster of blood vessels, including the blood vessel leading into the left lobe of my liver, which is the part that will remain.
‘This tumour is hard’, he tells me, pointing at the scan.
‘The others, they are boring.’ He dismisses them with a swipe of his hand. My oncologist is conservative, and hesitated for 12 weeks before saying the surgery was possible. If I didn’t have surgery, my liver would kill me soon, in a matter of months to maybe a year. He also reminds me it is risky. He gave me the statistics on my most recent visit, the one where he said, once and for all, it is operable. There is a 15 percent mortality rate for the operation he will do, but I have a choice between that, and dying in the next 12 months. My nurse tells me that surgeons are cowboys with scalpels, while my bowel surgeon is dismissive, planning the surgery that comes a few weeks after they take most of my liver, because he is not concerned and trusts my liver surgeon. I don’t know how to evaluate risk in this context when each person I speak to uses the word slightly differently. It’s not quantifiable.
My liver is, presumably, dark purple, like most people’s livers are. I have a toy liver that a friend bought me when the first scan was taken. The toy is yellow, and smiling. When I have my resection, I am taking my toy liver to the hospital to look over me, with that little sewed on smile. I wonder what my liver surgeon will think of it. He’ll probably laugh. He has a way of making me feel safe. I wonder what colour the tumours are and how they would feel if I held them in my hand. Perhaps they are the consistency of jelly, or solid, like tennis balls. I don’t understand how they could fit in my body. Months ago, when my treatment first started, I could feel them in my abdomen. I would shudder and shy away from the regular examinations where doctors would press their fingers into me like I was dough. I experimentally touched the area, tentatively, and I could feel resistance. It was vague, but there was a solid, spherical mass that I touched, and I felt sick. I can’t feel them now, because they have shrunk and are, according to the CT scans I get every eight weeks, less dense. They probably feel more like jelly now, and would have felt like a tennis ball before treatment started.
The idea of losing most of my liver is disorienting. When my liver is resected, there will be a space inside me. That space seems strange and makes me feel uncomfortable when I think about it too much. The liver regenerates though, and does so remarkably fast. In around 6 weeks, it returns to its previous size. No one has told me if it will function as well as it did before, or it does now, and I should probably ask. At the moment, my liver function is almost normal.
Liver function is, to my understanding, evaluated by numbers under a category of ‘liver enzymes’ on my blood test forms. I have a blood test to check my liver function, my blood count, and a number called a CEA, every two weeks, and have so since June. My liver enzymes were elevated before I started treatment, and have steadily dropped as the tumour cells die off and they recede. I imagine them leaving rings, like the inside of a tree, through my liver, which is almost definitely an inaccurate image of what is taking place. I still don’t know what any of the names next to the numbers refer to, or what the numbers mean, only that it is ideal to have them in the range indicated at the end of each row in the blood test result form. I check them each week, and excitedly point at the numbers that remain in the normal range, while exactly what they mean still remain a mystery to me.
I only drink very small amounts of alcohol, because I am constantly paranoid about my liver. My liver surgeon said to me, ‘respect your liver, Elizabeth,’ when I asked if I could drink. Every other medical professional I’ve spoken to has shrugged and said it’s not an issue, and that there’s no problem with drinking in moderation. I remain paranoid, to the point of superstition, and I don’t do anything I fear might hurt my liver. I respect my liver.
I sometimes get a mental image of what the liver is going to look like when they remove the right lobe from my body. It’s vague – I see scalpels, the sheet over the rest of my body leaving only the area around where the incision is made exposed and open. The cut will be under my right rib cage, and I’ve seen the scar that forms described on websites as like the shape of a hockey stick, or the Nike symbol. I know they will cut that line, cut through the muscle, and somehow, excise the right lobe. Will it be slippery as they remove it from my body, the surgeon and surgical assistants’ gloved hands covered in my blood? Do they remove it in smaller pieces, or in one solid piece? What does it smell like? I know the operation involves tying and reattaching bile ducts, but I don’t know what this means. I see lots of tiny yellow cords sticking out of a bleeding, dark purple blob, being twisted together in the hope that the left lobe of my liver will go on. Then, I sing ‘My heart will go on’ only replacing the word ‘heart’ with ‘liver’. Then I am standing, holding the liver in my hands, singing at it, lovingly. I don’t know where any of these images come from, or if it is normal to imagine singing to your resected liver.
I had a biopsy on my liver. The man who performed it was deeply apologetic, because it’s painful, and I was so frightened my hands shook and I could taste bile in the back of my mouth as I lay on the chair. My liver biopsy was performed while I was awake. They cut the skin with a scalpel in order to insert the needle between my ribs, and down into my liver, until it breached the tumour. I had to be awake in order to hold my breath, otherwise the wrong part of the liver will be biopsied. I was sedated, but not enough to forget the experience. The sedation was so pleasant, however, that my memories of a needle almost the size of my pinky finger being inserted into me as I was awake, watching, are detached and curious. The doctor explained each part of the process to me, carefully and gently. He told me that the sedative was like having a few glasses of scotch, just to make you calm. I love scotch, and I don’t drink it anymore because I respect my liver. The skin was numbed with a fine needle, then the sack around my liver (I imagine this brown and made out of hessian) was numbed as well. I felt the cells being pulled from my body, and it was a dull ache.
I see my right lung moving to fill in the space left behind when my right lobe is removed, only to be pushed back as the liver expands out and into where it was before. Moving against each other, silently and without any sensation. I haven’t asked yet if the liver regrowing process is going to be painful. Sometimes, I just don’t feel like knowing anymore. I don’t want to understand what is happening. I just want that right lobe gone, and the left lobe, my sweet, gentle left lobe, to take over, start growing, and fill the gap.
The pain after the resection is severe, and will be managed either with an epidural, or morphine automatically injected both into my veins and into the wound. I will wake up, (if I wake up) in intensive care, with a cannula in my neck, as well as cords and tubes and bags draining bile and blood from my body. It’s the cannula in my neck that horrifies me for some reason, sticking out. It might feel itchy and uncomfortable like a blowfly sitting on my neck, and I hope I don’t accidentally go to swat it. I can’t understand how bad the pain will be, or how I will process it. My medical team insist the pain will be ‘managed’ though this too is abstract, and not quantifiable either.
I wonder about asking to keep my liver, and plastinating it, and hanging it from the roof with fishing line. Or I could fill a large bottle with it, shoved in tight, and then preserve it with single malt whiskey. When I imagine the look on my liver surgeon’s face if I asked him this, I can’t bring myself to do it, even as a joke. My doctors become near godlike to me in this process, and I ache for their approval, as though they are my parents, or an older sibling that I am desperate to impress.
At the end of the surgery, my liver will most likely be discarded. Some cells will probably be taken out to study in more detail, perhaps a whole tumour. There is information in there, and someone will decode it, and they can tell, with their science I don’t understand, what RNA and genes respond to, and what drugs they can pump me with to control this as a chronic illness, rather than one that kills me quickly. But the bulk of the organ will be placed in what I imagine is a large metal bin, and incinerated. It is a little death, and makes me think of the fact that one day, the rest of me might be incinerated. I think about it often, incineration or decay. Before the surgery, I need to finalise my will, and make the decision, because the surgery is risky. Even with the surgery, though, my time is numbered. Five years? Ten years, if I’m being optimistic? No one can actually give me a timeline, or a time frame, because my liver tumours are abnormal, and I am unusually healthy for someone in my condition. The treatment will stop working, one day, almost without a doubt, and there is nothing I can do about this. The tumours will come back, and spread through me, beyond their current reach of my bowel, my liver, and my lungs. There are no eco-cemeteries in Canberra, so I’ll probably go with cremation, though I wish my body could be taken to my partner’s parents’ farm. I could be buried in a field like dead livestock, or a much loved dog. My body would rot there, and I’d leave little trace other than bright green grass.
Image: Julie Edgley