Lessons From Mother
Six weeks ago, my mom passed away after an on-and-off seven-year battle with breast cancer. Even though this was an outcome I knew was coming, I could have never expected it. My mom was the most compassionate and inspiring soul out there, a wonder woman who lived her life to better the lives of others, who knew how to listen to her body and more importantly her heart, who lived- like really really lived- with courage and passion. Right now, I’m taking this loss day by day, letting myself feel all the feelings I need to feel- disbelief, sadness, happiness, guilt, fear, confusion, solace- as I begin to process what this all means and will mean for me. It’s still hard to comprehend that she’s gone, but I know so fully and completely that the love and missing I feel right now will remain with me forever as the most important, guiding and loving parts of myself and my life as I begin to move forward.
My words can’t begin to do the memory of my mom justice, but over the past few years taking care of her, and especially in more recent months as her health took a turn, writing has been a mechanism I’ve turned to to cope, reflect and understand. Here, I’ve put together some words that combine a few pieces of writing: an essay I’ve been working on for a while about my experience taking care of my mom and learning about cancer; the eulogy I delivered beside my sisters at my mom’s funeral; and thoughts from meditations and visualizations focused on my mom and my own healing.
When I moved back home to be with my mom upon her recurrence diagnosis just over two years ago, our relationship changed. My mom was never just my mom- she was the cool mom; she was my friend, my confidante; we talked boys, we partied together, we traveled together and we chanted kirtan together. As a mom to three girls, she formed what we came to refer to as “The Daughter’s Club,” named for the tight-knit bond we shared as a foursome. In her role as leader of the Club, she taught me and my sisters about the power of female strength and independence. My sisters and I all left Toronto after high school and my mom followed us, to New York, India, Cambodia, London — she came, she toured, she shopped, she fed us and large groups of our friends. She wasn’t just our cool mom, she was everyone’s cool mom. In my childhood memories, I remember her always looking beautiful and always laughing. She was always having more fun than everyone else, but it was a contagious fun — everyone was invited to her party. My mom was my friend, guardian and protector for a long time. But two years ago, our relationship shifted as my mom and I, though still friends, and her still my guardian and protector, also became intuitive soul companions on a difficult journey. For the past two years, our life missions aligned in a shared determination to fight her cancer.
In this mission, my mom also became my spiritual guide and inner voice and her spoken and unspoken support gave me the strength to live in this challenging world. She posed a constant and daily reminder to everyone whose path she crossed of how to live in light — how to treat others with sensitivity and understanding, how to be brave and how to be vulnerable and how important it is to stay in tune with your body and mind. My mom taught me that I have all the answers already, and as long as I can remain in connection with myself, I will be ok. My mom taught me to live, and taught me to love, and taught me to love to live and she did this by example. Now that she has passed, I truly believe that there is no place where love ends and my mom begins and vice versa: she was and still is love.
A few months ago my mom and I decided that we were going to start a podcast together. The idea was that it would be a project we would share — the mission, to tell others what we’ve gone through in navigating my mom’s healthcare, both to share some pretty hilarious anecdotes, of which there were many unbelievable, ridiculous moments; but more importantly, to inform and educate others with the goal of her story being able to influence someone’s disease trajectory or make someone’s life a little bit better. Unfortunately, we never had the opportunity to start the podcast, but we did have a brainstorm session and I want to share two points from my mom. The first is how I believe my mom came to perceive her life over the past seven years — as she battled cancer, she told me she felt that she fit in life between treatments. To me this is so telling, because my mom never let cancer define her and she never stopped living. The second point and I’ll quote: “That’s what everything in life is about — connecting with other people going through similar things.” My mom believed deeply in human connection and our ability as individuals to learn from, find comfort in and support each other in this difficult world. She taught me that our greatest gift in this life is the impact we can have on others, and it has been beautiful to see, in the past few weeks of mourning, the impact my mom has had on so many lives. In reflection while writing this, I’ve thought a lot about this impact and why she had such a powerful affect on so many. Amongst a million reasons, I think my mom made people feel a little bit less alone and I guess that’s also my goal in sharing this essay. I hope you’ll read this and find something that supports you in it.
Last week, I was hanging out with a new friend who I met in the waiting room at the hospital with my mom. He’s being treated for brain cancer and I’ve been helping him navigate the system, understand treatment and side effects and some alternative treatment modalities. His experience in the stigma that surrounds his diagnosis made me realize how important it is to open up and keep open conversations about cancer and illness. Cancer is the most prevalent part of our world that we’re not talking about, similar to death, and I want to set an example by not being afraid to talk about it as much as I can and need to. I think this is what my mom would have wanted.
What is Cancer?
When my mom was first diagnosed with breast cancer and began undergoing treatment in 2012, I was in my undergrad, and I had no idea what cancer was. When I look back at that time now, I realize how little I knew and understood about illness in general. Around the same time, I began to struggle with feelings of anxiety and depression. I had very little support and virtually no coping mechanisms.
In April 2016, when I first came home after a metastatic tumour was found in my mom’s spine, she was radiated and I still had no idea what cancer was. When in September 2016, her follow-up scans showed more cancer in her bones, I still didn’t know what cancer was. It took me another month or so — hours and hours of my own research and a lot of my own conversations with alternative healthcare practitioners — until I understood what cancer was. At no point did any Oncologist at any hospital (and we visited a few, in Canada and the US), so no doctor in the conventional healthcare system we depend on, clearly explain cancer or my mom’s diagnosis in a way that made sense to me or my family. It took us a long time to understand that my mom’s cancer, considered ‘manageable,’ and no longer ‘treatable,’ would be the cause of her death.
When I moved home permanently, I began to manage my mom’s healthcare. This started as a coping mechanism for me. My own Doctor called this “homework mode” when I went to her asking for help managing my own anxiety. Instead of addressing or working through how I was feeling, I did research. A lot of research. Like silly ridiculous amounts of research. When we saw my mom’s Oncologist, she told us she dreaded the days we came in because we knew more than she did. I made it not just my job, but my life purpose, to learn everything about cancer, cancer treatments, clinical trials, alternative healthcare modalities, cancer diets, different kinds of healers, etc. and most recently, dying.
In this process, I gained access to the world of illness and learned the language of cancer. My mom, determined to fight, quickly decided that the status quo treatment would not be good enough, and we began a search for the newest and best treatment options available. It wasn’t denial about her prognosis, but a powerful optimism ultimately grounded in fear, that guided her approach. This was the start of a period of searching, traveling and treatment that continued up until my mom’s passing. In the past two and a half years, my mom tried TEN conventional cancer treatments based at FOUR hospitals in THREE different countries; saw NINE Oncologists in FIVE different cities; worked with TWO cancer management consultants, FIVE Naturopaths, ONE expert in repurposed drugs, ONE functional medicine practitioner; and experienced SEVEN kinds of alternative healing modalities. These included radiation, chemotherapies, immunotherapies, more herbal supplements than you can imagine (one Doctor recommended she take 116 pills a day), lots of different kinds of cannabis, hyperbaric chambers, salt rooms, a man with a helmet that read auras and sent biolight waves to my mom’s brain, a magnetic vibrating bed, and some energy healers. You name it, my mom did it.
But really, what is Cancer?
Now, bear with me because I want to get technical here. This might sound silly to you, but I believe that despite how prevalent cancer is in our society today (sadly, I bet you can think of a few people right off the top of your head who have or have been affected by cancer), most people don’t actually know or understand what cancer is. I have had countless conversations with friends who have stopped me to say: “Sorry, this is embarrassing, but I don’t think I really know what cancer is, can you explain it to me?” This is not embarrassing! Not knowing about cancer is a blessing, but knowing about cancer is important. Here’s a little definition:
I understand cancer like this:
Cancer cells are things we all have in our bodies. My mom had them, but so do I and so do you. We learned about this part in school: cancer cells are cells that grow and divide uncontrollably until they form lumps or masses, which we know as tumours. Usually, our immune system functions to fight and get rid of cancer cells just like it does a cold; but when it doesn’t, whether it’s too weak to or it tries and fails, is when tumours develop. Different types of cancer (e.g. breast) refer to the area in the body where the tumour is located, and the type of cells the tumour is made from (e.g. breast cancer develops from breast tissue and might show up as a lump in the breast as it did for my mom).
I’m sure you’ve heard of cancer being described in different stages, which delineate how much the cancer cells have grown, whether they have spread to other parts of the body, and how the cancer will be treated:
— Stage 1 means a tumour is small and contained in the part of the body where it started.
— Stage 2 means a tumour is bigger but still contained.
— Stage 3 means a tumour is large and the cancer cells have likely spread to nearby tissue or lymph nodes (Ah what are lymph nodes right?! Lymph nodes are the immune system’s waste filter and they exist throughout the body to get rid of harmful stuff like bad bacteria and infections (which is why our lymph nodes swell when we get sick). But, when cancer enters the lymph system, it not only limits the lymph’s ability to fight bad things, it can also use it as a way to travel to other parts of the body).
— Stage 4 means cancer has spread to other organs or parts of the body.
In stages 1–3, cancer treatment usually consists of surgery to remove a tumour, chemotherapy and localized radiation. And this is important, in stage 1–3, cancer is considered treatable, getting rid of the disease is a possibility and probability.
When my mom was first diagnosed with breast cancer in 2012, her disease was considered stage 3. She had a lumpectomy (a surgery to remove the tumour from her breast, as well as lymph nodes in her armpit that were infected with cancer cells), then chemotherapy, then radiation of her infected breast. My mom’s cancer recurrence in 2016 bumped her up to stage 4, otherwise known as metastatic cancer. That meant her cancer had spread to other organs. For my mom these were her bones and her liver. In terms of treatment, the disease was no longer considered treatable, it was considered manageable, which means treatments like chemotherapy and radiation couldn’t get rid of the cancer, but they could try to keep it from growing bigger or spreading more.
Now what are all these treatments I keep talking about?
— Biopsy: A biopsy is a test used for the diagnosis of cancer. In a biopsy, a sample of tissue or cells is removed from the body and tested in a lab to analyse whether it is cancerous and if so, to distinguish the kind of cancer. I’m sure you’ve heard these words before and confused them just as many times as I have: a benign result means no cancer; malignant means cancer.
— Surgery: The purpose of surgery in cancer treatment is to remove a tumour.
— Chemotherapy: Chemotherapy (or chemo) is a systemic treatment, which means that it travels through the bloodstream to target and kill cancer cells in the whole body. Chemo can work in two ways (and ideally works in both): by killing cancer cells and by stopping them from spreading to other organs or parts of the body. Essentially and historically, the drugs used in chemotherapy treatments are quite toxic, as they are developed from distinct chemical substances. This makes sense considering the goal is to kill cells, but it means chemo can be quite harsh. It doesn’t mean that chemo is poison, as there is a lot of evidence to support its effectiveness (this is a complicated debate that ultimately comes down to weighing out the cons of treatment vs. the realities of cancer). Chemo is commonly associated with specific symptoms like hair loss, nausea, fatigue and low blood counts which can make someone more susceptible to bacteria and illness. Chemo, or other similar systemic treatments (which might include hormonal or targeted treatment or immunotherapy — but I won’t get into these here), is the standard in cancer treatment today.
— Radiation: Unlike chemo, radiation treatment is localized, meaning it specifically targets one area of the body, usually that of where the tumour is located. Radiation, or radiotherapy, kills cancer cells by aiming really high beams of energy at specific cells with the goal of destroying those cells’ ability to divide and grow. It is usually used in conjunction with chemotherapy as a standard treatment, and can cause fatigue and nausea as well. Once cancer is considered stage 4 (non-curable, just manageable), radiotherapy is used as a tactic to manage pain (tumours aren’t always painful, but they can be very painful; for example, tumours in the bone are generally quite painful because they cause degeneration and weakening of the bone). Radiation works for pain relief because even though it won’t be able to stop the spreading of cancer, it can shrink tumours by killing cells in a specific area, and that can lead to pain relief.
These definitions and understandings only begin to skim the surface of cancer and cancer treatment, but they are a good general summary and peek into the large and complex world of cancer. Moreover, they are completely written in my voice, and thus represent a very subjective way of understanding, but hopefully an easy-to-follow one. I am not a Doctor and not an expert in cancer, just someone with a little bit of hands-on experience, so please don’t quote me or take my word as ultimate fact.
Now, here’s the thing about getting technical — I’m glad we did it because it’s really important to an understanding of cancer and disease, but it does little to help understand, emotionally, what people go through when they go through cancer. I can’t speak for my mom and her personal journey, but I can speak from my role and position as caretaker and daughter — a place that I know a lot of people can relate to if you have ever had a family member or friend with any illness (physical or mental). Cancer care, especially at the level of advanced stage disease, bares a fairly simple question that of course comes from a more complex medical debate — aggressive treatment or quality of life? It might seem obvious but it’s really a huge toss up. Cancer treatments have the ability to drastically change your quality of life and deciding how aggressive a treatment modality to have is making a decision about how much you want your life to change. While choosing an aggressive treatment might (and only might) increase your chance of fighting your illness, it can also be a risky choice. It’s hard to comprehend how important and sensitive this question can be. Managing my mom’s healthcare required me to make a lot of difficult decisions like this with, or at times for, my mom.
Just like cancer, dying is not simple. It requires a whole ton of logistics and extremely difficult decisions that I couldn’t have imagined I would have to make until I was in the moment making them. I guess there was an unconscious illogical part of me that believed she was just going to be sick forever. My mom’s optimistic approach to her disease meant she didn’t speak to me or my sisters much about death, which left the actual processes involved up to us as my mom did not have a spouse or partner. We were fortunate to have wonderful care and guidance on best approaches to decision-making, but we were not prepared for the emotional toll of the two weeks in which my mom was actively dying. It’s hard to put words to the emotions I felt being an advocate for my mom both as she lived, but especially as she died — I take comfort now knowing that I did the absolute best I could have.
I’ve flip-flopped a few times on whether to talk about death, and especially dying, in this piece of writing. I’m still a bit unsure so I’ll share my hesitation: on one hand, I’ve realized that death is this huge thing that every single person in the whole entire world is going to experience. From that angle, conversations about death should be mainstream — we should talk about it in an aim towards some form of acceptance, and also to understand what we can expect, both in a process of watching someone die, and in a process of dealing emotionally with death. There is objective fact and information out there about death, but it runs in an inner circle of doctors and nurses and people who have experienced dying before. If you’re not in that group, you don’t know (or at least that’s been my experience). And now that I’m in that group, I’ve wondered- do I share this information? Do I have a responsibility to? Would it have helped me to know? Do people want to know?
Which brings me to the other hand of my hesitation on sharing: maybe the actual process of dying is something we don’t need to know about until we need to know about it. It’s scary, upsetting, sad, and it sucks to learn it in a hard way and time, but maybe setting expectations before that time sucks just as much.
For now, I’ll leave it at that. But, I would encourage others to not be afraid to talk about death, or not talk about death as you see fit. Nothing needs to be experienced in silence.
Coping with Cancer
Part of my track to understanding what cancer was, was realizing and deciding that cancer in my family didn’t have to define me (similarly: depression didn’t define me; my relationships with others didn’t define me; my move home didn’t define me; my job didn’t define me). I once found a lot of comfort in labels, in definitive terms and how they could mean definitive outcomes and definitive paths for me. But releasing my dependency on labels has opened up the space to discover me, beyond and separate from my circumstances and my story. It’s been pretty freeing. I now take more comfort in an unknown. I can’t control things or people, but I can trust in a bigger picture and I can trust in my own intuition to lead me in the right direction. For me, (finally) welcoming (i.e. accepting) illness into my family and my life meant opening up deeply to a new self-awareness, and an incredible process of healing and powerful inner transformation.
Just like any other parent-child, my relationship with my mom was complicated at times, and coming home did not come without challenges for us. My coping mechanism — diving so deeply into my mom’s healthcare — filled me with all of this knowledge about cancer, but also filled me with judgement and resentment for my mom and my circumstances (quitting my job and not being able to work, moving back home, leaving my friends and relationship abroad). These emotional beliefs and attachments to a previous reality took me over a year to release.
In the first year of being back home, my life completely revolved around my mom and I did very little to acknowledge myself and my own emotional needs. What I didn’t realize was that this was detrimental to my mom’s and my own, and my sisters’ and my friends’, etc. health. It sounds cheesy and I know this isn’t the first time you’ve heard this, but it’s something we all know to be true: you have to take care of yourself to take care of others. As obvious as this is, I didn’t get it. It felt selfish to think about myself when my mom’s suffering was so physical and visible. It felt trivial to work on my own emotions, which weren’t a matter of life or death like my mom’s illness was. It was hard for me to justify taking care of myself.
It took me a year and a big fight with my whole family (mom, sisters, aunts, etc.) to actively make the choice to make a change. I can literally remember and pinpoint the moment in which I made the decision that I would begin to make time for and work on myself because I wanted to feel and experience life in a different and better way. Very practically, this is what that work has looked like for me:
1) Moving into my own apartment
2) Getting and working closely with a fabulous life coach
3) Consistently practicing yoga and meditation (but not being crazy or self-judgmental when I can’t)
4) Cultivating self-love (cliché, I know, but this stuff really works)
5) Opening up honestly to people around me about what I do and how I’m feeling
6) Buying a dog (she was actually for my mom, but worked wonders on the rest of us too)
7) Starting my own mindfulness training business
This is an ever-changing, ongoing list and it doesn’t mean I have some secret remedy to normal human feelings of anxiety or sadness. I don’t know the best approach to acceptance of death, or illness, or life challenges, but I do feel like I now have a repertoire of tools to help me get through each day. The best part of doing this work was being able to share some of these tools with my mom when I saw she was suffering emotionally. The main point here is that to learn how to care selflessly for my mom, I had to learn how to show up for myself first.
Over the past few weeks, (amongst stress, anxiety, sadness, disbelief), I forgot how to breathe many times. Today (in deciding to share this story and open up about my mom) I’m making the choice to learn how to breathe again. I know along the way, I’m going to forget, time and time again, but all I can do is try my best every day to remember. Slowly, now, I’ll learn again, breathing a little deeper every day as this new reality develops and begins to live within me, as part of me. In making the choice to breathe, I can take some comfort that this is the first choice in a grander resolution to live fully- to honour my mom’s memory in each breath and each decision as I step forward each day in a life without her physically here.
In the past two and a half years, I’ve had a crash course in a lot of big life things: I’ve learned about healthcare, healthcare systems, disease and dying; I’ve become a self-designated expert in cancer, cancer treatment and alternative healthcare; I’ve changed career paths; I’ve experienced transition in relationships; I’ve embraced my spirituality and let it guide me to where I am now, a non-internet-sharer sharing this story with you.
I’m sharing in tribute to my mom and I’m sharing in hope that this piece of writing might help or support someone, practically or emotionally. But I’m also sharing because for a long time, it was hard for me to talk about my mom’s illness, it was hard for me to talk about being unemployed (in the very formal sense of the word), it was hard for me to accept my life and my feelings. Yet, the second I decided to open up to the people around me, they opened up right back. We all have something going on, something deep, something enveloped in fear that we don’t talk about. Opening up helped me learn that being vulnerable feels good. Being open to feeling, even if that feeling is sadness, feels good. Finding compassion in the darkest places is possible and feels good.
And, I’m sharing because in Canada (where I live), recent statistics indicate that nearly 1 in 2 people will have cancer in their lifetime (Source: Canadian Cancer Society). That statistic is crazy! Given these numbers, I can confidently write that everyone knows someone who has cancer. But, we aren’t talking about it and moreover, we don’t know much about it. I want to help open up conversations around cancer and the challenges faced by families dealing with illness. We have an opportunity to share our stories and share our resources, to really be there for one another in emotional, but also very practical ways.
Over the past six weeks since my mom died, I’ve been resistant to invoke her presence, to communicate with her soul, to ask for her guidance — I haven’t felt able or ready to connect with her on a spiritual plane as it would mean really accepting that she’s gone. But the other day, I greeted my mom as the sun was shining bright through the window and I could feel a force, an energy in that light, so I closed my eyes and said, “Hey mom.” She said (as she always does) “Hey Aliy.” It made me smile. I felt so strongly that my mom was that sun. After a few minutes I said “I’m going now mom, I’ll see you later,” and she said “Ok, I’ll be here when you come back.” I told her I missed her, and she said “I’m right here.”
If you find value in these words, please tell me. If you want to talk to me more about my experience or tell me about something you’re going through, please get in touch. It’s been a long journey for me to get to where I am now, and I am here for you.
This is not a plug, but if you’re interested in experiencing some of the ways I cope (mindfulness & meditation), check out @moveandmindful (Facebook, or Instagram). If you’re interested in doing yoga, meditating or working with me, send me a note at hello@moveandmindful.com. Move and Mindful is the business I started a few months ago that offers mindful movement and meditation classes with a goal of making mindfulness techniques easy and accessible to all.
