Dear Shashi,
The biopsy on the peanut-shaped mole on my shoulder blade came back positive for melanoma. Despite the fact that the doctors kept assuring me that the odds were in my favour. Nothing to worry about, they said. This seems to be the way of the Doctor. They like to placate you and insinuate that your concerns are misplaced, and then at the last moment, they like to get you good and panicked. I’m beginning to think this is a technique taught in medical school, probably on the same syllabus as How to Speak Entirely in Impenetrable Acronyms and The Importance of Bustling and Looking Unavailable.
In the past week, I have submitted to a barrage of scans. They exposed me to cyclic sound pressure, electromagnetic waves and x-rayed me, and the bad news is they found three more tumours burrowed beneath my scapula bone and a fourth lodged next to my sternum. This counts as metastasis. I have Stage IV melanoma. Don’t look it up. I wish I hadn’t. I’ve had a dark week, as you can imagine, full of hopelessness and self-pity. I barely got out of bed. I kept my face pressed into a pillow and grieved. I might not even turn thirty-four. Would I get to see the global warming skeptics eat their words? Would I see out the season of Mad Men?
Noah reminded me that I was not actually dying yet, that we’re still no closer to knowing how this will end, and I have every reason to be optimistic. He’s right. My doctor says that given my low level of metastases, with treatment the outcome could be reasonably good. I refused to ask what reasonably good means. Hopefully, it means until my mid-seventies. I have an appointment for next week for a treatment plan, and I’ve resolved to stay positive. I’m healthy, strong, and determined to fight like a lioness.
Yours,
Ruth
Dear Shashi,
Aside from the tumour on my shoulder, I’m showing no outward signs of illness. I’m going to yoga and running twice a week, and everyone keeps commenting on how well I look and so life goes on. I still try to subsist entirely on stilton and figs, Wingnut still won’t play fetch with me despite my pleading (he’s a no-good dog, but I love him), and I’m still enjoying my work at the Youth Counselling Centre as much as ever. I have some great clients at the moment, resilient, funny, courageous kids, and I’m grateful to be part of their lives. I’m lucky to do what I love.
Most days I can’t believe I have cancer. It must be a mistake, I think. How could everything remain so ordinary? Standing in line at the bank to pay the hydro bill, spilling coffee on my jeans, the way the sunlight strikes the cherry trees and transforms the view from my window into a Polaroid picture. I try to vanish into those ordinary moments.
My oncologist has recommended I participate in a comparative Phase Three clinical trial for a drug called Proleukin. Because here’s another fun fact about melanoma: melanoma cells do not respond to chemotherapy; apparently they have overactive DNA repair genes, so melanoma’s generally treated with immunotherapy rather than chemotherapy. Chemotherapy is a toxin that wipes out all the rapidly dividing cells in your body, while immunotherapy triggers your immune system to produce its own T cells and natural killer cells, and then they, hopefully, annihilate the melanoma cells for you. I like to think of immunotherapy as the carrot and chemo as the stick. Becoming a self-educated oncologist is one of the side effects of treatment. The waiting room is full of cancer patients moonlighting as doctors.
I have to undergo a series of scans to see if I’m eligible for the clinical trial. Noah’s calling it The Goldilocks Tests, because in order to qualify, I have to be just sick enough. Too little or too much, and I’m counted out. Even if I qualify for the trial, I won’t necessarily end up being treated with Proleukin, as patients are assigned at random to two groups: one treated with Interferon, and the other with a combination of Inteferon and Proleukin. I have a newfound admiration for the lowly lab rat, he who gives his life to medical science against his will.
The average success rate for Interferon alone is around 15%. The trial average for the combination therapy is about 25%. My oncologist made it clear that those statistics are not for curing or eradicating my cancer but only for stalling and shrinking the existing tumour growth. I wonder what the success rate was for bloodletting? Apply leeches liberally.
Obviously I want to get on the Proleukin arm of the trial. Those marginal percentage differences could mean life or death. Noah couldn’t believe that I don’t get to choose which drug I want. But I guess everyone would choose Proleukin, and then who would be in the control group? They’d have a dud experiment on their hands, and that would be the end of Medical Science. Apparently the end of Medical Science is much worse than the end of me.
Considering everything, I’m feeling hopeful, and tough and stubborn. I ain’t going nowhere. I really think everything will be okay. I will be okay. Fingers crossed the trial goes my way, and this Big Ole Cancer-beating Show gets on the road soon. Watch out, Melanoma!
Yours,
Ruth
Dear Shashi,
The good news is I’ve been accepted into the clinical arm of the trial! I’ll be one of the participants treated with Proleukin and Interferon. Tell her what she’s won, Ladies and Gentlemen! An infusion of each drug twice daily for twenty minutes—four days on, ten days off—over three cycles, and then I stew in their juices for two and a half weeks. After that, some blood work and another scan to check if the drug is doing its job.
If I were a participant in a “blind trial,” the oncologist said, I wouldn’t know which drug I received, and if it were a “placebo blind trial,” then I wouldn’t know if they injected me with the drug or with “sugar water.” That would be hilarious, if dying didn’t hurt so much.
I’ve signed on the dotted line of a million waivers and consent forms, and they’ve drawn nine vials of my blood, and so my treatment begins in three weeks! Metastatic melanoma is incurable, so what I’m hoping for is stasis. No further tumour growth. However, the oncologist believes that if I contain the disease to the four small tumours in my soft tissue, I may survive for a long time. When he said that, I felt as though my parachute deployed. I cried in the stairwell after my appointment. I hadn’t realized that I’d been living in free fall.
I had the tumour on my shoulder removed a few days ago. The result of the surgery is a jagged incision between my shoulder blade and my spine. It won’t be a pretty scar, but Noah thinks it’ll help me make conversation with strangers at the pool.
Oi, what happened to you, then?
Stabbed in the back.
Either way, I’m delighted the tumour is out of me, and I can’t wait to get this drug trial started and shrink the rest of those mothertruckers!
Yours,
Ruth
Dear Shashi,
I’m on medical leave until I feel better. Noah isn’t sure I made the right decision to quit work early. He thinks that I’ll succumb to depression without anything but my disease to focus on. You know how he is, a man of constant activity, a devout believer in practicality. He thinks we should try to keep everything as normal as possible, but when I’m at work, I feel as if I’m being held between two pieces of tracing paper. Nothing quite touches me. I’m far off from myself.
I’ve been trying to enjoy life, and often I succeed. We’ve been out eating and drinking and seeing friends and living it up as much as possible. I’ve dragged Noah to the arts cinema several times and then forced him to discuss the movie with me afterwards over a glass of red wine. He’s been good-natured about it all and calls it my pre-treatment uproar. He sends his love to you and his congratulations on Mike’s promotion. I’m full of envy that you’re moving to Paris. I will definitely visit once my treatment is finished. I can’t wait!
Ruth
Dear Shashi,
A tumour has appeared on my right hip, visible just below the surface of my skin. It’s a hard, strange lump, as if someone found a way to press a pebble into me. At first I thought it couldn’t be a tumour because who has tumours appear on the surface of their body? Seriously, what am I? A dog? Is this dog cancer? I kept trying to rationalize. This is not a tumour because my body’s fighting and winning this war. This is not a tumour because I’m so healthy. It’s not a tumour because I feel fine. It’s not a tumour because this cannot happen to me. But that’s not how cancer works. You could be doing a hundred push-ups a day, and inside, your cancer has metastasized from liver to lungs. There’s no rationalizing.
The tumour on my hip will stay put. My oncologist says given the spread of my disease, systemic malignant cell eradication will be more effective than individual tumour excision, and that if they operate now, they’ll have to delay the immunotherapy until after I’ve healed. I wanted to beg him to cut it out of me. I’m tempted to hack it out myself. I cannot bear to see that little protrusion. I get dressed in the dark. I made Noah cover up the bathroom mirror. If I so much as brush my hand against it, I want to scream. Noah’s insistent that my medical team knows what they’re doing. He thinks they’re refusing to remove the tumour because they want to maintain the integrity of my body and keep me healthy enough to fight. He keeps assuring me that the drug treatment will destroy all the cancer cells. But I suspect they won’t remove it because they expect more tumours to appear. They can’t keep chopping them out, or there’ll be nothing left of me. I’ll be a human colander.
Do you remember when we were 15, and you cut my hair to give me that bob with a shaved nape that was all the rage in the 90s, and the shaver slipped and I ended up with a runway halfway up the back of my head? I cried for days. I would go to the bathroom every hour and check to see how much hair had grown back in the last fifty-five minutes. I wouldn’t let anyone see my head. I wore floppy hats to school. And then the chemistry teacher, Mr. Cochrane, made me take my giant hat off during a Bunsen burner experiment because it was a fire hazard. I was so in love with Liam Wright, and he sat behind me, and I could feel his eyes on that exposed strip of stubble on my scalp. I would have done anything to have my hair grow back instantly. I remember thinking that nothing worse could ever happen to me, my life is over.
I know all this rage and fear isn’t helpful, and I have to stay positive and appreciate all the love and care in my world. I have to believe I will get through this.
My mother arrives tomorrow; she will take care of me through the drug trial period, as some of the side effects can be nasty. I’ve been exercising, and hydrating and eating well. I’m steeling myself for the fray, fueled on organic vegetables and yoga. I suspect I will feel better when the treatment begins and I’m actually doing something to combat this heinous disease.
Yours,
Ruth
Dear Shashi,
I had my first infusion this week. I sat in a giant leather recliner, swaddled in blankets with a heating pad across my knees. The chemo nurses administered Benadryl to counter any allergic reaction and Acetaminophen in case of fever. They rolled hot towels around my arms so my veins would vasodilate and inserted an IV in one wrist for the saline solution and an IV in the other for injecting the Proleukin. As soon as the drug entered my bloodstream, the flu-like symptoms struck, like being injected with winter. The icy sensation began at the IV site and travelled up my arm. I was wracked with shivers. My hands and feet turned Antarctic cold. A metallic taste filled my mouth, and then both my eye sockets pulsed and my sinuses burned. My bones ached.
I’ve finished my first cycle of doses now, and the side effects persist. Bruises from the needle punctures pucker the skin in the dips of my elbows, and my palms tingle as if with static electricity. I imagine if I touched you, your hair would stand on end. I’ve got a banging headache that follows me around like my own theme tune, and when I blow my nose, it comes out pink because my platelet count is so low. The oncologist assures me I will feel less mutant during the week without drugs. Either way, I have finally begun treatment, and I tell myself that I feel so ill because these terrible drugs are working!
Yours,
Ruth
Dear Shashi,
I believe the treatment is slowing my tumour growth. I’m scared to even type those words in case I jinx it. But my appetite has returned, and I even gained a couple of pounds. My mother says I’m looking healthy again, and Noah’s being unbearably smug about the success of the treatment.
I’ve had a week off the drugs, and I’ve been making the most of this reprieve. Some days, I didn’t think of my illness at all and went out into the world as a whole and happy human being. I went for a walk in the woods today and talked about books and ideas with a friend. I laughed without feeling a shadow over my heart. At sunset, the clouds turned the colour of peach ice cream. I felt buoyant, as if living is effortless, as if I were a stone skipping across a lake.
I’m hungry for experience. I want to run until my thighs ache, I want to ride around in the desert at night with the windows open, hot air licking the moisture from my skin. I want to smell frangipani. I want to come home from work with wet hair and muddy boots, and spend the evening watching Real Housewives and eating almond butter out of the jar. I want to live.
I’m afraid to get ahead of myself. As the oncologist constantly warns me, stasis is the most we can hope for, and that means I may never go back to a normal life, but who knows what is possible? Every day, I walk the tightrope between denial and despair. I think perhaps we do that all our lives, but only when you are ill is the tightrope brought into such sharp focus.
Yours,
Ruth
Dear Shashi,
I hate needles. I hate their thinness and how they shine. I hate how my skin flexes and bows to their pressure, and I hate how, when one is inside me, I still feel its rigid, metallic coldness. At my request, they installed a plastic IV tube into a vein in my chest. It’s called a port-a-cath, and it makes me feel a bit like a robot. This won’t be removed until the end of the treatment, so I don’t have to be jabbed quite as much. The only downside is sometimes my port clogs, and I have to stand with my arm above my head and cough to shift the blockage. If that doesn’t work, the nurse flushes me.
I’m right in the middle of Round Three of the Trial, and so far, I have had fewer side effects than during the previous two cycles. Though every now and then, I’m beset with the odd shivering fit and the tiredness is worse. Some mornings, right after I’ve got out of bed, a wave of fatigue swamps me, and the effort required to bring my coffee mug to my lips feels daunting. Even so, this round is closer to the snuffles than a nasty bout of avian flu, so much more bearable.
The chemo room at the Cancer Agency has an open plan, and we all sit around together getting dosed. It’s the saddest opium den in the world. Yesterday, I sat next to a forty-year-old mother of two with Stage 3 breast cancer. Her head was a hairless orb, white and dimpled as the moon. She drank orange juice through a straw and read People Magazine as though she were at the salon getting her nails done. A man about Noah’s age sat in the corner by the window. He wore work clothes, stained Carhartts and his flannel shirt folded up over his elbows. He kept his eyes shut and his face to the wall. A drop of his seafoam blue cytotoxic drug splashed against his bare skin and scorched him. The nurse injected this drug into an IV in his forearm and pumped the poison through his veins and straight into his heart.
Yours,
Ruth
Dear Shashi,
This morning on CBC, I heard a woman talking about surviving a plane crash in the Arctic Circle. One moment, she sat in a climate controlled metal tube with wings slicing through the sky, and the next, she lay face down in the tundra, the wind whipping through her hair. A human foot, a miniature can of Coca-Cola and a plastic-wrapped ham-and-Swiss croissant landed beside her. She looked up to see a column of smoke rising from the fuselage. She lasted through the night by keeping a bonfire burning, fueled by the wreckage. She drank tiny bottles of whiskey and ate several of the deluxe cheese trays. She was too afraid to despair. Hope is not logical.
My friend Sally came to see me today. She brought me frosted lime cupcakes, and she was kind and thoughtful, and I hated her. It pained me to hear that she’s going to Hawaii in two weeks. While she’s lying on a white sand beach, daydreaming beneath her sunhat, I’ll be at the Cancer Agency getting juiced. Even her problems with a co-worker only elicited my envy. What do problems with a co-worker mean to me? It’s all so insignificant. I’ve been banished from the realm of the immortals.
I interact with Noah and my mother as if a vacuum lies between us. I’ve crossed over into some space they don’t understand. My mother makes sure I’m comfortable, finds books for me to read and brings me endless cups of green tea, but she shuts down whenever I try to talk about the possibility that my treatment will fail. She can’t allow herself to think of the future that might face me. Part of me is afraid to die because I don’t want her to know that kind of unhappiness. I don’t want to break her heart.
Noah tries hard to hear me. He lives with a therapist, he’s a pro at reflective listening, but he keeps telling me that we don’t know what will happen and to stay focused on the present. He holds onto my body in the night, feels the weight of me, and I am so solid to him, so real and so permanent, that he cannot conceive I might die.
I imagine this is how a war veteran might experience her homecoming. All around, life is ordinary. Your mother makes you a sandwich. Your husband brings you the mail. But you know you’re out on the edges of your life, fighting a battle against enemies only you can see.
Please still send me all your news. As difficult as it is to hear about other people’s lives, I still want real relationships.
Yours,
Ruth
Dear Shashi,
It’s the middle of the night, and I’m experiencing a strange pain down the back of my neck. I burn and throb and tingle. I’m acutely aware of my body all the time now. Even sitting is uncomfortable. I’m fixed to my flesh and bone, no more flights of fancy, no more daydreams. I’m bound to this disappearing body. I’ve lost thirteen pounds since October. I’m practically skeletal, yet I subsist entirely on two-bite brownies and cherry supreme ice cream. My teenage self would be impressed.
Since last Wednesday, I developed mouth ulcers, and the skin on the backs of my hands is red and blotchy and itches like I’ve been bitten by a swarm of mosquitoes. I’m also suffering from orthostatic hypotension, and so intermittently, the act of standing up causes my blood pressure to plummet, which in turn causes me to plummet. Noah keeps asking me if I’ve been tight-lacing my corset. You would think with so much practice I’d be more competent and that as soon as the darkness closed in on the sides of my vision I’d simply sit back down again, but somehow it always catches me unaware. Coming to is a strange rebirth. I find myself rolled over by the stove or collapsed beside the toilet.
Noah’s unflappable optimism exhausts me. He’s convinced that my symptoms are no more than side effects of the drugs, rather than the effects of my cancer, and that once the trial is over, I will feel much better. I need to keep looking ahead and being positive, he says. Yesterday I asked if his arms were tired from banner waving. He walked out of the room. So I’m guessing the answer is No.
Next week is the CT scan. If the cancer has progressed, I will have to come off the Proleukin trial and begin another course of treatment. If I can’t be cured, then I wish for amnesia or ignorance or to get run over by a bus. I don’t want to look down the barrel of my own life. Can I not be spared that? Noah says that if I didn’t know about my cancer, I couldn’t do anything about it. But human beings are not designed for this. Death should be sudden and unexplained. It should take you mid-sentence on a hot afternoon with a drink in your hand.
Ruth
Dear Shashi,
I got the results from the bone scan. The bad news is that the melanoma has spread to one of my ribs. I’m sure the appearance of this new tumour will count as disease progression and I’ll be booted off the trial. I’m still waiting on the rest of my results. On the bright side, the superficial tumour on my hip is no longer clearly visible and feels as though it has been pulverized with a blender. I imagine my insides to look like a game of Pac-Man. The power pellets have given me the ability to eat up Inky and Pinky and Clyde, but those pesky ghosts keep getting re-spawned. Still, if I get ten thousand points, don’t I get a bonus life?
I’m becoming intimately acquainted with despair.
Yours,
Ruth
Dear Shashi,
I had hoped to spend this week pretending to be a perfectly ordinary thirty-three-year-old woman. You know, a bit of restorative yoga, a visit to the mall, a sneaky glass of wine or two and perhaps a ramble in the woods with my dog. But my right arm, after years of good service, decided it would rather be a useless appendage. When I woke on Thursday and asked my hand politely to put itself down on the bed and help me get up, it wouldn’t answer, and no amount of coaxing has worked since. My shoulder had been giving me a bit trouble for a while, due to the surgery I thought, but now I worry that I have nerve damage in my cervical vertebrae.
I’ve been for a scan and in a mere week we will know what is wrong. I don’t understand why the operator of the imager can’t just tell you what she sees. There’s so much medical bureaucracy, as if they hope to muffle you under all the paperwork. I often feel like an afterthought, as though the technicians and surgeons and nurses hang about the hospital to do something other than make me well. The healthcare system could save millions by employing vervet monkeys to press buttons and move slides around.
Noah feels confident that my inability to grasp objects or sign my name is side-effect related. Proleukin can cause inflammation of the nerves, which can lead to paralysis. Either way, I am doing my best to get my arm working again. I don’t want to panic, but it is difficult to experience such a sharp physical decline. I miss you, right arm. Left arm is valiantly filling in, but one-handed typing is slow.
Write soon and tell me everything.
Ruth
Dear Shashi
I’m on a lovely cocktail of Tramadol and Oxycodone, so I’m currently pain-free. What’s more, I sleep, I walk around, I bend over, I sit down! Batteries not included. I’ve had radiation on the tumour in my shoulder that affected my ability to use my right arm. My radiation therapist called it a “spot-weld.” He was middle-aged, peroxide blonde and ponytailed. He had the body of a professional volleyball player and the intonation of a teenage girl. Everything he said was a question.
“Where there’s a possibility of collateral damage to your organs, we’re going to use electrons? And then, where we need to penetrate the tumour, we’ll use photons? I’m going to make some marks on your skin to direct the beams?”
I undressed and lay on the table, and he produced his stencils and a black marker and drew on my skin, like being tattooed by a child. The radiation therapy machine looks like it would be more at home in NASA than a hospital. It’s huge and pivots and whirs, and then its big vacant eye zaps your insides. I’ve named it HAL. I had forty-five seconds of radiation on my shoulder, and the tumour has already shrunk in size, which has given me back most of the mobility in my arm.
I feel ridiculously joyful opening the refrigerator or brushing my hair. I love this body of mine. I’m hoping madly that this upswing of good health continues.
Ruth
Dear Shashi,
I am beginning to understand moment-to-moment living. I take pleasure. I take all of this wondrousness in. As unnatural and bizarre as this all seems to me, my own death has always been inevitable. And I’m not alone. We will all make this journey. I kept on thinking this shouldn’t be happening to me, but this is what happens. We die. What counts is how I spend my time now.
It’s hard to not to wallow in grief and self-pity, but the cure is absorption in the world and deep engagement with life. I read, I take photos, I kiss Noah, and I go to the pool and float around on my back in the warm water. I think of you on your weekend trip to Nice with Mike, and I picture the blue of the Mediterranean.
And I’m still hopeful. My oncologist thinks we might achieve stasis yet. I do feel better than I have in weeks, and while I’m not in any way in perfect shape, it is encouraging to see my body work at healing itself. Despite the poor scan results, I believe I might actually beat this thing. Melanoma has a high percentage of spontaneous remissions. It’s possible my immune system could go into overdrive and destroy the tumours. I read an article about a man whose melanoma had metastasized to his lungs and liver; he went into remission and lived twenty years. I have to believe I could be one of the lucky ones.
Ruth
Dear Shashi,
I finally got all the results from the scans for the Proleukin trial. The tumours beneath my clavicle have all shrunk by a several centimetres. But the tumour next to my sternum is bigger. There’s new growth too. The cancer has metastasized to my liver, lungs and into my right bicep. The good news is that the majority of my tumours are still located in my bone and soft tissue, and the tumours I do have in my internal organs are not yet interfering with the essential functioning of my body.
My oncologist prescribed another immune booster called Yervoy, which is currently offered as a treatment option for patients who have not responded well to other therapies. He assured me this is not the medical equivalent of a farewell drink in the Last Chance Saloon, and that I should think of my recent tumour growth, and coming off the Proleukin trial, as a setback and not as the end of the line. The new treatment will begin next week. I have not fully processed all of this information yet and what it truly means for me. I’m not happy, but I’m trying to roll with the punches.
Yours,
Ruth
Dear Shashi,
On Tuesday night, on my walk from the cinema to the car, I collapsed. My body contorted, and I crumpled onto the asphalt. Even with Noah’s help, my left leg would not hold me, so he called an ambulance. I had an emergency MRI of my brain and upper-neck, with my head clamped inside a padded cradle. I wore a plastic cage, similar to an ice hockey mask, over my face, and I had to lie perfectly still like that for an hour, inside a tunnel only 24 inches in circumference. I tried not to think of coffins. The honking and clanging of the electric coils was so loud that even with earplugs it sounded as though I were at a construction site. The scan showed a tumour in my brain toward the back of my skull that’s swollen and bleeding and the source of my motor dysfunction.
It’s probably an understatement to say this has been a challenging development. Forget flying or being invisible. I think standing up might be the best ability. Noah is manly enough to carry me from room to room like a blushing bride, but once he goes to work, I’m in a wheelchair.
While we were out grocery shopping in the canned goods aisle, with Noah alternating between steering me and steering the cart, we bumped into a social worker I knew through the counselling centre.
“Oh my goodness,” she said. “I’m so sorry. Have you been in an accident?”
“No,” I said. I felt Noah, frozen to the spot behind me, stricken with a can of garbanzo beans in his hand. “I have cancer.”
She didn’t know where to look, and I felt this terrible shame for my damaged body. No one likes to look at me full on. I’m an aberration. I’m a leper.
We’re not sure when I’ll be able to walk again. The tumour’s location renders it inoperable. The oncologist has me on a drug regimen to reduce the inflammation; Dexamethasone for the swelling, Topamax to ease the nerve pain, Voltarol as a muscle relaxant and a dose of Oxycodone just for good measure. There was an old woman who swallowed a fly.
Yours,
Ruth
Dear Shashi,
My dad arrived last night and looked shocked to see the physical state I am in. I can’t accept it either. When I sleep, I dream of a cure being discovered, or of the treatment working or spontaneous remission. I jump out of the wheelchair and go running. I walk back to work, and everyone who knows me stops me on the way, and they all say, “Thank God, Ruth, you look so well, I’m so glad.” Sometimes, even in my dreams, I remember it isn’t true, and my legs give way, and I keel over onto the sidewalk, or in the middle of all the well-wishing, my phone rings and it’s my oncologist, and he says, “The CT scan shows a large tumour in your liver,” and I start to sob.
There’s a lot of fear in this house. I’ve assembled the three people in the world who care most if I live or die and have asked them to witness my decline. I know they grieve and suffer. Noah is utilizing all of his flex days, so he’s home a lot, and I’m glad for that. He spends most of his time lying in bed with Wingnut and me, giggling and kissing and staring at the sky. Yesterday I lost it because I realized that if I die, he’ll meet someone else, and they’ll have this life instead of me. I know it’s unfair and unreasonable, but I was angry with him that he gets to keep living. I cried, and he stroked my hair and said, “Ruthie, it’s not as if I want you to die. You’re my person. I want to live my whole life with you.”
I don’t want to give this up.
Yours,
Ruth
Dear Shashi,
I elected not to continue treatment with Yervoy. The likelihood of recovery is remote, and besides, along with liver failure and perforated intestines, one of the listed side effects of Yervoy is Death. Can death be a side effect? I always thought death took centre stage.
Noah tried to talk me into going to the US or trying different treatment options here in Canada, but it is impossible for either of us to deny the situation I’m now in. I’m beginning to experience shortness of breath because the tumours in my left lung interfere with my ability to get oxygen. I feel as though my chest is full of soggy cotton balls.
My pain is mostly managed, and I dispense my own drugs, which is a full-time job, as my drug regimen is best described as rigorous. Magnesium salts and extended release pills and fentanyl patches and then a serving of haloperidol to stop me vomiting everything back up, followed by a glass of water and a long nap. In some ways, I’m grateful for my drug regimen, as it gives a sense of focus and control to my life. I feel as if I am doing something to cope.
I’m still no closer to knowing when I’ll die. My health will deteriorate. The doctors cannot predict how, but they suspect my lungs will continue to be compromised, as that’s where my tumour growth has been most rampant in the last few weeks. I’m determined to see as little of the antiseptic insides of the hospital as I can and wring every last bit of living out of my body. It’s been relieving to finally opt out of treatment. I’ve gone rogue. I wish I had done it earlier. Just said no thank you to the toxins and the side effects and the waiting rooms and the roller coaster of scan results. At the time, I thought I was choosing life, but instead, I chose the possibility of a future over the quality of the present. Either way, it’s all hindsight wisdom now.
Life is extraordinary and not at all what I thought. I never could have fathomed this. Think of us both riding around in your mom’s old Ford Taurus with the windows down, singing to U2 until our throats hurt. If someone had taken me aside then and told me this was coming, I never would have believed them. My life story has been bizarrely truncated. I’ve swerved off the road. I think of all the plans Noah and I made: weekend camping trips and saving up for a top-of-the-line touring bike and going to the Belle and Sebastian show in Toronto in November, and it pains me so much that sometimes I wish I had never existed at all.
It’s difficult for me to accept that I’ll never be old, that this is truly what happens to me: I get sick, and I die at age thirty-three. I will be your friend that died young. Underpinning all my living has been the assumption that I would die in my nineties after a full and rich life. But that’s a lie. All of us with our clean scrubbed faces live next to a black hole.
Yours,
Ruth
Dear Shashi,
Your care package arrived yesterday. Thank you for the books and the tee-shirt. I’d forgotten all about my teenage love of Pinky and the Brain. I wear the shirt all the time.
If I’m going to die at thirty-three, I want to do it with grace and dignity, not as an egotistical monster, but I have to stop myself from yelling at Noah and my parents, “Bring me bonbons now! NOW! I’m dying” or “Change the channel. I hate soccer. I don’t care if you like it. Which one of us is dying? Huh?” I want all my whims catered to. I often find myself thinking, Noah should do this for me because he’ll have his whole life after my death to do what he wants. But we’re all potentially dying. We either owe each other everything all the time, or we owe each other nothing and get to choose what we’re able to give to others.
It’s a beautiful morning, sunny and crisp, and I’m lying here watching a very fat robin in the plum tree. In this moment, my biggest wish is to live to see summer. I want Noah to take me to the lake so I can lie in the shade and drink lemonade and feel the heat of the sun in the sand against my skin.
Yours,
Ruth
Dear Shashi,
On Monday, my palliative care nurse informed me that we’ve entered the end stage. Of course, some part of me already knew. This body is not long for the world. A large tumour bulges below my clavicle, and about six more have bloomed across my ribcage. My kidneys ache unrelentingly. The lymph nodes in my left armpit are distended and rubbery. My skin has begun to feel too small for what is now inside it.
But it was so difficult to hear her say that aloud. I’m unfixable. I don’t even understand how that’s possible. It’s astonishing to me that there is no way to reverse this. Isn’t there a Mars Rover? Drone attacks? 3D printers? Surely, someone can help me.
I suppose at least there will be no more waiting. My course is set. These last nine months, I’ve felt as though I were in the path of an unfolding accident, desperately trying to find a way to avoid impact. Now there’s nothing left to do but roll into it.
I live my life in daily increments. I push forward into the most reduced of futures. I eat whatever I like, with no concern for my figure, which remains terrifyingly trim, and I watch endless movies. I make Noah choose what to watch because I simply freeze up when I have to make the decision. What if this is the last movie I ever see and it’s a dud? I can’t take responsibility for that.
So the answer to your question is yes. Come and see me now. I don’t think it can be delayed and I want to see your face.
Ruth
Dear Shashi,
I’m glad you enjoyed my celebration of life. I did too. I’m pleased I didn’t have to die first in order to attend it. I don’t know why everyone doesn’t have a pre-death celebration. You ought to be able to eat the finger food and drink the wine. God knows you’ve paid for it.
In the ten days since you and Mike left for Paris, the doctors informed me that the lining of my left lung has begun to fill with fluid, and my kidneys are threatening to go on strike. I fractured a rib getting into bed. A tumour in my cervical spine has grown so big I have trouble holding up my head. When I’m moved, I feel as though my organs have come loose and slosh against each other. Typing this takes so much effort. Even lifting the phone up to my ear exhausts me. Noah puts me in an armchair by the window, and I stare out at the sky like an oversized tabby cat.
Do you remember how my dad travelled for work so much when I was a kid? I used to go with Mom to take him to the airport sometimes. The divider between the main lobby and the old departure lounge had those wooden panels with windows. The panels didn’t go all the way to the floor, so we’d always reach under and touch his hand before he disappeared through the swinging doors and out onto the tarmac. I was full of gratitude for that last touch even though it upset me so much to say good-bye.
Always,
Ruth