looking up

Somewhere in the third round I remembered to look up.

Dealing with a health crisis can be a bit like staring at your feet while running at a full tilt. Great for dealing with immediate problems, but ultimately dangerous. One day in October someone told me that I had been dealing with my mom’s cancer for months, and it made me pause.

Months? Surely that couldn’t be right.

But sure enough it had been over three. Since then I have logged more time in hospitals and doctor’s offices than I care to calculate. But I don’t remember most of it because somewhere along the way, it has become part of my routine. Like commuting to work, or eating oatmeal for breakfast.

When I finally took the time to survey my life outside of the hospital, outside of my mom, it no longer looked the same. My work felt dull, and unfulfilling. My relationship was fraught with tension. My friends were distant as our lives split on increasingly diverging roads. Then my grampa was hospitalized and I felt my last reserve of mental energy slip away.

Suddenly there was eery calm. A silent acceptance. Like sinking your face below the bath water. Under here it’s perfectly okay that my life has gone to shit. 

“I took a deep breath and listened to the old bray of my heart. I am. I am. I am.” — Sylvia Plath

Unfortunately you can’t stay hiding in the bath forever. I knew something had to change. I had to change. I had to get off this road. Millions of people have done what I’ve done, plus so, so much more. Surely some of them had found a better way. 

Reading. Colouring. Walking. Meditation. Yoga. Affirmations. Running. Drinking. Prayer. I didn’t know which one would work for me. 

But I was determined to find out.

round 2

The second round of chemotherapy was very different than the first.

My mom decided she didn’t enjoy staying at the Princess Margaret Cancer Lodge. She didn’t like the food, was far away from friends, and couldn’t get home care visits while staying there. I had serious reservations about her going back to Muskoka (mostly about her being far away from her doctors and me if something was to go wrong). But she also didn’t a plan for where she was going to live for the next four months. Her doctors had told her it would be very difficult to care for herself. So she had decided to rely on the goodness of friends and family to take her in for a few days at a time. It made the planner in me nervous. But ultimately it wasn’t my call.

So I went with her to chemo and then at the end of the day helped her get into the car of an elderly volunteer driver who was going to take her up north.

Turns out that sweet, well-intentioned, old man couldn’t really see at night. And the lights on his dashboard also didn’t work. So my mom, exhausted and with a belly full of chemotherapy drugs, had to lean over his lap to shine her cellphone on the dash for the entire four hour drive and tell him where to go. In my head it’s was a hilarious sight. But she was terrified (rightfully so). The next day, she gave the volunteer agency an ear full.

My mom stayed with a retired couple whom I have never met. Every day she would text me descriptions of the great food they were feeding her and the beautiful, spa like retreat she was staying in. Sun bathing on huge, granite rocks in their back yard. Long walks through the forest. It sounded idillic, and worlds away from the care I could have given her at my hectic condo or the PMC lodge in Toronto. Then I got a different text:   

I am in crippling pain and going to the ER.

Her next couple texts painted an incomplete picture at best. All day at work I tried to piece together what had happened. But it wasn’t her first time at the hospital so I wasn’t really worried. Normally she was in pain and wasn’t taking any pain medication. I thought it was just something like that.

But when the hospital moved her to the ICU—I knew something was wrong.

She had sepsis. An infection in her bladder had spread to her kidneys and her blood pressure had bottomed out. It killed me to be so far away. I kept waiting for the text asking me to come up north, but it never came. I thought she would be released by the weekend, but then wasn’t. Then I thought she would be released by Monday. She wasn’t. The days pressed on and it seemed that nothing was really changing or improving.

She was released after a week of hospitalization, a day before her check-up for Week 3 chemo. She looked so frail. So tired. It was my first time seeing her since she had been in the hospital so I gave her a big hug. I could feel all her ribs and her spine as I held her. As she recounted her harrowing tale to each level of doctor and nurse, they all looked shocked and saddened. They told her to go home and rest for a week before starting the next cycle.

“Stay with your daughter so you are close by,” they instructed. “And next time, come see us immediately if something is wrong.”

Their eyes levelled with mine and gave me a stern look. I felt the walls start to close in but my heart told me they were right. I smiled weakly, grabbed my mom’s suitcase, and together, we headed home.

my mom’s hair

I knew my mom was going to lose her hair. I mean, hair loss is such a movie trope associated with cancer, it’s practically a cliché. Hair loss was in all the literature. Every time we went to the hospital I saw ads for wigs. I had even ordered my mom her very own custom head wrap. I knew it was coming.

But it didn’t stop me from crying when it happened.

I think some of my earliest memories are of my mom’s hair. It was black, thick and curly. It was wild and uncontrollable (despite her best efforts). I remember pulling a tendril straight and then being amazed about how it magically bounced right back into a perfect curl. My straight, limp, blonde hair never did anything that cool. She had the hair of an artist. And as she aged, bold white streaks added to her eccentricity.

Two weeks after her first chemo session, late one night my mom posted a photo to her Facebook profile. She had shaved her head and taken a close up of her scalp, showing off her elvish ears. She was trying to make light of the situation but I couldn’t stop staring at it—horrified. Not horrified because she looked bad. My mom actually has a surprisingly beautiful and uniform skull (a sentence I never thought I would actually say). It was like seeing a once mighty lion, now with his mane shaved off. It was awful and unsettling, like a part of her very being had been stripped away.

It took me a week to recover from that photo, to gain the courage to see my mom in person and not look frightened.

It took even longer to kiss her now bare scalp and tell her that she is beautiful. My mom smiled, shrugged, and said it was her Demi Moore look. If she was having a crisis about her hair, she wasn’t letting on. I was taken aback, how confident she seemed. My bold mother didn’t even want to wear a wig to make things appear normal. She was embracing her new look.

If she can do it, so can I.

the picture vs. reality

I had pictured what my mom would look like during chemo a hundred times. Her face would be gaunt. Her hair would be gone. Her body hunched over a toilet. When I closed my eyes it was always the same, grim picture.

But I didn’t picture what the actual chemotherapy would be like.

What it would feel like to walk into the chemo day care waiting room. Seeing hundreds of people sitting in chairs, waiting for their number to be called. That there would be bald children with worn eyes. That there would be an attractive guy the same age of me waiting for treatment. Or a mother with cancer holding her young child on her lap. Every race, every age, every possible demographic was represented in that waiting room—and this was just one day out of seven at the clinic. There were so many other people I would never see.

I didn’t picture the nurses.

In their long light blue trench coats and hospital gloves. I didn’t think about how they had to be covered from head to toe because what they were handling all day (chemotherapy drugs) was poison. I couldn’t have imagined how sweetly they would explain each step to my mom. How they would bring her fresh, hot blankets to wrap around her whenever she got cold. And how their expert hands would delicately find the port under her skin and insert the needle each time without any pain.

I couldn’t have foreseen my mom laughing for most of the day.

That people from all over the world would have sent her such loving and encouraging cards, emails, and Facebook messages. That she would be given her own private room and washroom that she could relax in all day. That she wouldn’t feel nausea that day or even for days to come.

I didn’t see how resilient she truly is.

That my mom would wake up each day determined to make the most of it. That she would push herself to follow all the doctors’ advice. To walk a little each day. To eat healthy. To get lots of rest. To let friends help her. I didn’t see her body fighting as hard as it could, and that after Cycle 1—her blood work would come back perfect.

I had spent so much time picturing the worst, I had forgotten to make room to see the positive.

I mean, there are still a lot of bad things. My mom still has cancer. And so do all those people in that waiting room. But my mom’s first experience with chemotherapy wasn’t nearly as bad as the story my brain had already written. And there were so many positive things happening along the way—I could no longer ignore them.

The reality of my mom’s chemotherapy was so much brighter than I could have ever expected.

unprepared

Be careful what you wish for. The harder road, is in fact, harder.

A mere 24 hours after the pathology appointment my mom was in the ER, clutching her side, shaking in pain. And I had a full-on meltdown.

We were unprepared.

Immediately following the appointment, things started to fall apart. First we couldn’t get nurses to come to the lodge where my mom was staying. They told us that there was a conflict of interest in the funding of the lodge and nursing support. And then after hours of negotiations it was decided my mom would have to travel each day back to the hospital for her hydration therapy and check-ups. Not great. But ultimately fine. We could handle that.

Then we didn’t know if my mom could get the operation for both her PICC line and IP port.

They both had to happen that day (Friday) so she could start chemo on Monday. But she had accidentally been booked in for two IP port surgeries instead. And no one could get ahold of the surgical department to change the booking. It wasn’t until a nurse came to take my mom into IP port surgery that another nurse ran up to us and let us know they could do both. Phew.

Then the food at the lodge sucked.

My mom has been a health nut her whole life. At this particular moment she kept a kosher diet, was gluten-free, and didn’t eat anything with antibiotics, dyes, or additives. A tall order. But I was hopeful that the lodge would provide healthy enough food to satisfy her palate. Wrong. It was gross hospital food. And they only served meals five days a week (meaning you had to fend for yourself on the weekend). Crap. Like a good daughter I went to the grocery store trying to find ready-made food that matched her nutritional needs, all that she could store in her room. After a couple of hours circling the grocery store, and reading every possible label, I emerged with enough food to last the next four days. Great.

Then it was her medication.

There was some problem with the paperwork. So the hospital transferred to another pharmacy. Only no one told the new pharmacy that the script was cancelled at the old pharmacy. So they wouldn’t fill it. After an afternoon of phone tag and an evening in a pharmacy waiting room—I finally got it filled and left to go check on my mom post-surgery.

I found her curled on her bed crying.

She was bleeding through the bandages and only had regular Tylenol to cope with the pain.

“What have I done?” She whimpered. “I chose wrong. Is it too late to change my mind? I want the other treatment. Please.”

I called the hospital to see what I should do. After another hour on the phone I finally got through to the charge nurse. Go to the ER. She shouldn’t be bleeding at all.

My mom was delirious by the time we got to the ER.

The intake nurse asked my mom what was wrong and she started to take off her shirt—in the ER waiting room—to show her the surgical wounds. The poor intake nurse looked shocked and could barely do up my mom’s blouse fast enough to keep her decent.

“No, no, not here, dear. Don’t undress here. Wait for the doctors,” the nurse said soothingly.

Turns out all my mom needed was proper pain management. The bleeding was normal. So after six hours in ER, now armed with morphine, we left. I tucked her into bed, set her alarm for every 4 hours to take more pain meds, and then finally drove home.

I started to cry. A real, honest to goodness, ugly cry.

That was just one day!? How was I ever going to get through this? There is so much to do. I sat staring at brochures about starting chemotherapy, her drug regime, and the list of side effects, and a dark thought crossed my mind. I have no idea what I am doing.  How am I ever going to manage this. And this is only going to get worse. She’s going to get weaker. I don’t know how to help her through all of this. There’s just so much. Too much. I went online to figure out what to expect next week. There I found countless blogs about your first week in treatment. The clothes you need. The creams you need. Water bottles you need. Hand sanitizer, kleenex, cling wrap, lozenges, mouthwash, wigs, caps, and gloves you need. A knot formed in my stomach. I didn’t have any of this stuff. These people are prepared. They weren’t just talking about surviving—they had figured out how to look trendy and beautiful while losing their hair. They had found funky jewellery, cute totes, and cozy slippers. How did they know to do all this stuff?? How did they have time? What have I been doing with my time? I collapsed into tears. My boyfriend found me a little while later, closed my laptop, and carried me to bed.

“Enough,” he quietly said. “Enough for one day.”

choose a path

I told my mom to stay off the internet until we knew her official diagnosis. Too many dangerous rabbit holes to tumble down. Plus, she had her hands full just recovering from surgery. But I could not resist the temptation. Late at night I would lay awake trying to make heads or tails of complex medical studies. It was terrifying. With no direction on the type of cancer (there had even been talk of multiple cancers) – I spent a good month learning about ever possible (worst case) scenario. By the time the end of August came and it was time to hear the pathology results – I was a nervous wreck.

High-grade serous ovarian cancer. Stage IIC.

I stared at the doctor in disbelief. It wasn’t stage IV?! Turned out, the cancer had not spread like the scans had initially suggested. While it was about the size of an eggplant, tightly wedged against her bowel, kidneys, and omentum, and fluid from the tumour filled her lungs – none of the biopsies had come back positive for cancer. Even better, the surgeon was confident that she had been able to remove all of the tumour from my mom’s abdomen. This was amazing news. Short of the tumour itself being benign, it was quite possibly, the best news.

After weeks of mentally preparing myself for the worst – a new, powerful thought emerged: my mom could survive this.

But before the surgeon gave us time to let this news wash over us, she posed us with a difficult choice. Technically, my mom’s diagnosis is right on the border of Stage II and Stage III. She explained that while scientists and doctors had drawn lines where the stages start and stop – the body doesn’t have any such lines. The abdomen is just one big, open space. Despite the Stage II diagnosis, the treatment her oncologist wanted to give my mom was for Stage III and IV. It had been getting great results, and the occurrence of repeat cancer diagnoses was lower than traditional treatment. It just came with one catch…

The recommended treatment was a lot more invasive and harder on the body.

This treatment, called intraperitoneal (IP) chemotherapy, would directly deliver a super concentrated dose of chemo drugs into my mom’s abdomen (right at the source of the cancer). It meant another surgery to insert a port under her skin, on top of her rib cage and a permanent PICC (peripherally inserted central catheter) line in her upper arm. She would have to live with both of those objects in her body for at least 4 months. It also meant more severe side effects (pain, nausea, vomiting). It was going to be so intense that she would need to spend three days after each chemo appointment hooked up to an IV getting hydration therapy to give her body a fighting chance of handling all the toxins in her body.

“You don’t need to do choose this treatment,” her doctor warned. “There are no studies to prove the effectiveness of IP therapy for Stage II. It’s only been studied for Stage III or IV.”

I looked at my mom paralyzed in fear. Should she choose a harder four months for the chance to be cancer-free for the rest of her life? It sounded like the better option. But I wasn’t the one about to put myself through hell. And what if it didn’t work? Then she chose to suffer … for nothing. There was a long pause.

“Let’s do it.” My mom looked defiant. “I only want to do this once.”

perfection

I’m a bit of a perfectionist. I work in a creative, deadline-driven industry so attention to detail is imperative, and even rewarded. I have always set a high bar for myself – even as a child. My dad tells me that when I was a toddler, if I got anything on my dress – even water – I would have to take it off immediately and then thoroughly examine all my new outfit choices before making my final decision. Luckily, I am not that obsessive any more, but I still like things done a certain way.

But what I am slowly learning (mostly the hard way) is that it is impossible to be a perfectionist when it comes to cancer.

I simply do not know enough. I can’t. There are too many specialities. Surgery. Anesthesiology. Oncology. Pathology. Hematology. Pharmacology. Toxicology. And for all their expertise, there are still things they don’t even understand. They say things like – that’s not my speciality, they haven’t done studies for that, or my personal favourite, no one knows. I don’t even know the questions I should be asking. When I asked the doctor if there are clinical trials that would improve my mom’s chances of survival, she gave me a condescending smile, and told me those were only for patients with unique cases. So does that mean my mom’s case is common? What does that mean for her? How was I supposed to know that? Those are, of course, internal thoughts, but you get the point…. But here’s what I do know:

There is a 70% chance my mom won’t be alive in 5 years.

I can read all the brochures, all the studies, and all the medical journals—but no matter how much I learn, how much I prepare—I can’t change that. I can’t make it untrue. It just is. And I have to learn to make peace with that. Not with my mom dying, but with that fact that I cannot prepare my way out of this reality.

My mom already has cancer. The die has been cast.

Now my job is to embrace the imperfect. Accept that there are things beyond my control. That it is okay the doctors don’t have all the answers. And that her treatment is largely, an experiment. All I can do is get her in front of the best people in their field. To help her get to each appointment. And then help her do exactly what they recommend. So even though the odds are not on our side, my mom can have the best possible chance of being in that 30%.

coming out

For a long time I didn’t want to tell anyone. For one thing, I could barely get the words out. Every time I said the word cancer, the “realer” everything got. And I didn’t want it to be real. But another reason I didn’t tell anyone is that it is just awkward to talk about.

Hi! How are you?

Well, um, my mom has cancer.

Oh.

It’s a conversation killer. And a total non-sequitur. My friends are all in their late twenties or early thirties. Health isn’t on their radar. Instead, they talk about their work, friends, children, homes, parties, vacations. Everyone is really happy. My boyfriend told me I should prepare a series of canned answers to combat the inevitable ‘how are you’ or ‘how is your mom’ type questions. I’ve been asked those questions a lot lately and each time – I feel like I answer wrong. Too much detail, too little detail. Once my boss asked me how I was, and I totally froze. As he walked away he said, “I just wanted to make sure you are okay”. Everyone means well – but the problem is there’s no ‘good’ response. Every day we take perfectly cropped, colour-corrected pictures. I’m guilty of this too. We show off the awesome parts of our lives, and then delete the not so perfect parts.

When I tell people my mom has cancer, I suddenly feel very exposed. It’s too … raw. And messy. And that makes people, myself included, uncomfortable.

the abnormal

“I think it was Lessing who once said, ‘There are things which must cause you to lose your reason or you have none to lose’. An abnormal reaction to an abnormal situation is normal behaviour.” — Viktor Frankl

I am a creature of habit. Maybe it’s because I am a bit of an introvert but the familiar has always given me a sense of calm. Every morning I need two things: a coffee and an hour alone. These two things ground me and help me be a pleasant person by the time I reach work.

But when I was looking after my mom, my routine no longer existed, and it felt like I had descended into chaos even though it was such a small change.

Normally our days go something like this. My mom wakes me up because something was wrong. I stagger out into the living room, wait for my eyes to adjust to the sunlight, and then ask a standard set of questions to assess our day. How are you feeling this morning? Pain level? Temperature? Any oozing from your incision? Did you take any pain meds in the night? Do you want more now? I kept a journal of all the pain meds my mom was taking. She was prescribed all the heavy hitters – the ones that require your driver’s license and signature to fill at the pharmacy. Besides her pain meds, she also takes a small mountain of herbal supplements with every meal. Once the meds are sorted, I start on the daily tasks. Fixing meals. Booking appointments. Changing dressings. Organizing activities to keep her mind off the pain. Somehow, every day I would look up and it would be mid afternoon. I wouldn’t have even had breakfast yet. No wonder I was so cranky… When you are looking after someone else, it’s very easy to forget to look after yourself.

For my mom, nothing was familiar any more.

She wasn’t in her own home. Her days were no longer her own. And every day it became increasingly clear that she no longer trusted her own body. One day she had gone to the doctor with a urinary tract infection, and the next she has a tumour the size of an eggplant trying to kill her. And then while in the hospital they found blood clots in her lungs. Her world fell apart in only a few short weeks. Now everything was the worst case scenario. The bruise meant she was hemorrhaging. Her fever was a raging infection. Her blood pressure was the sign the PE had spread. It’s heartbreaking to watch her struggle to recognize her own body. For me, my routine will return to normal, at least mostly to normal, once my mom goes home next week and I go back to work. But for my mom, the timeline is a lot longer. I don’t know how to help my mom adjust to this new reality. Or how much either of us want this experience to feel ‘normal’. When you have cancer, everything feels foreign and you long for the familiar. But the bubble has been burst, and I’m not sure that even once this is over, if either of us will ever return to the old normal.

the shower

The night we returned from the hospital, my mom asked if she could have a shower. During her entire hospital stay, the nurses only had time to give her one sponge bath (she was supposed to get a shower or sponge bath daily…). Before the surgery, I had gotten everything ready for this event. A shower chair, extra plastic mats, organic soap, even a long scrub brush. I also had our apartment professionally cleaned so it would be as sterile as possible. Only at the time, I didn’t think I would be coming home without professional help. We had asked again and again for a nurse or PSW (personal support worker) to come and help my mom at home, but quickly found out that the only patients in Canada that get any support – are palliative.

Be grateful your mom isn’t palliative, they told me.

I got the shower running, grabbed a couple fresh towels, clean pyjamas, as well as her favourite pair of extra-high hospital underpants (she couldn’t wear anything that didn’t go all the way up over her incision—which ruled out all her underwear).

If you need help—anything at all—just ask. I don’t care.

This will be fine. I repeated it in my head. My mother bathed me many times as a child. She took care of me. And now I have to take care of her. She needs me. I slumped down outside the bathroom door and listened as she stepped into the shower. Please don’t need help. I don’t know how to do this. I don’t know if I can do this. My mind whirled. After about 10 minutes, the water stopped. She had finished! Relieved I stood up, walked into the kitchen, and started washing the dinner dishes.

Sarah – I need you.

My heart dropped. As I opened the door, I saw my mom was standing naked in the middle of the washroom. She was shaking. She was holding a towel, and looked upset.

I can’t dry myself. I can’t … bend. Or …

Her voice cracked. She was frustrated. This must be frustrating. I draped a towel over her shoulders for warmth, knelt on the floor, and then gently started to press a second towel against her legs. As I worked my way up, I fought the urge to cry. For all the time she was in the hospital, I guess I hadn’t really looked at her. But now, standing here in the washroom, I realized she barely looked like herself. She had bruises and small cuts all over her from the surgery and IV ports. Her belly was swollen from the surgery, but she had gotten so thin you could see her ribs sticking out of her chest. And she had so many bags under her eyes from not sleeping. She looked so vulnerable. I wanted to hug her and tell her it would be alright, but I didn’t know that … so I couldn’t bring myself to form the words. Instead, I grabbed her clothes and gave her a half-hearted smile.

Let’s get you dressed.