Caring for a sick parent as a young adult just freaking sucks! But as difficult the task, the reward that comes with it is worth every second of struggle, even if the outcome is less than desirable or anticipated. The journey carries many lessons and I have been realizing them along the way. I’m sure there’ll be plenty more downstream, but for now, here’s a short list.
THERE ARE NO SACRIFICES. THERE ARE CHOICES
I’m a 29-year-old single female. I could be doing a myriad of things in various places with a multitude of people. Instead, I chose to get involved in my mom’s cancer treatment and care, taking on her responsibilities as a provider and head of the household – because if you’ve met my parents, you know who wears the pants and calls the shots – all while trying to conserve at least some sense of normalcy, continuing my education and maintaining a social life.
I did this in 2015/2016 during our first rodeo with this demon and I said I would do whatever in my power this time also because nothing matters to me more than the wellbeing of the people I love, and my mom has been the glue holding us all together.
So, with no hesitation, I moved back to Colorado from Chicago as soon as I found out Mama’s diagnosis. In fact, it was the first day of my and my, at the time, boyfriend’s vacation in Virginia that I cut short to catch the first flight out to Chicago so I could pack my bags and hit the road. Fortunately, he, along with my brother and sister-in-law in Michigan, wanted to come with me, so I didn’t have to feel the weight of the situation all on my shoulders.
EVERYONE ENTERS SURVIVAL MODE
That first week was extremely difficult for all of us. Mama went into a full-on vegetative state, where she couldn’t eat without vomiting or walk without collapsing and the only sounds coming out of her were moans from excruciating pain her brain caused trying to push through her skull. She lost 20 pounds in that short window of time and the steroids made her muscles disappear entirely. She also lost control over her bladder function and even though we doubled-up on adult “underwear,” aka diapers, we still needed to wash the sheets and bedding every single day. At that point, her oncologist gave her a couple of weeks, if not days, to live.
I quickly learned that most people don’t respond to crisis the way I do and it was especially disheartening that most of my disappointment and anger was directed at the rest of my family.
My dad didn’t even give Mama a fighting chance, counting down her sunsets and drowning his feelings in beer or other alcoholic beverage of the day. My younger brother vanished for days at a time, and when he finally showed up, he nonchalantly walked right past everyone, including Mama, without as little as a “Hello.” My twin brother and boyfriend went to every single appointment with the doctor in the first couple of weeks and still needed to ask me Mama’s medication regimen. They called every time she threw up or peed her pants. They called daily to ask me what my plan for dinner was. While I was killing myself to support the house which my parents had just purchased a month prior and figuring out how to get us all out of the rut.
SOMEONE NEEDS TO STOP PANICKING AND FACE THE CHALLENGE
I ran on momentum. Or maybe it was emotional involvement. I worked 8-12-hour days, cooked dinner on most nights, cared for Mama, read too much and not enough. I sacrificed sleep to read “one more” PubMed article in hopes that the million open tabs would eventually lead me to finding a cure for her condition. When I found the time to go to bed, I was in my parents’ bed. I needed to be close to my mom all first 3 weeks post-diagnosis to monitor and control her behavior, as she was getting up in the middle of the night – first, to obsessively clean, and later, to go to the bathroom, but her legs were buckling due to brain swelling, so I needed to make sure she didn’t suffer any falls.
I have committed countless hours to researching the pathophysiology of her cancer which allowed me to isolate cell signaling and metabolic pathways as well as abnormal growth factors playing role in the disease (I suppose my past research experience hasn’t gone to waste after all), for which there are remedies with low toxicity and low dose drugs, relative to chemotherapy. I have come to develop a really close relationship with her primary care provider, whom I contact every time we need a script for yet another medication. I have met all the staff involved in Mama’s treatment and when we weren’t satisfied with the level of care at one clinic, I found a different cancer center with a physician who genuinely listens and wants us to have quality of time, while also fighting to give us quantity.
NO ONE KNOWS WHAT’S REALLY BEST FOR SOMEONE ELSE
Let’s not kid ourselves. Mama’s diagnosis – leptomeningeal disease (LMD) – is serious and prognosis is really grim, with median survival of 2 to 4 months (we’re at exactly 3 today), with some breast cancer patients surviving up to 1 year. Breast cancer tends to spread to the brain, liver, lungs, and bones. My mom’s primary tumor chose the central nervous system and it floated around the brain and spinal cord in the cerebrospinal fluid. Eventually, some of the cells lodged in the pia mater and subarachnoid space (meninges), proliferating at random, so they don’t exist as an actual mass (therefore no surgical intervention is possible, especially that the vasculature is immense, so there would be risk of hemorrhage and damage to more tissue, or death), and the severity of disease cannot be quantified. Because of the protective blood-brain barrier and nature of the primary cancer – triple negative breast cancer, which is very aggressive and comes back with a vengeance, because the stem cells have mutated and become highly resistant to available chemotherapy – standard treatment is not curative and its only purpose is to provide some quality of life by delaying deterioration of neurologic functioning. Initially, I was worried that the cancer would penetrate the brain tissue and make Mama forget who any of us are, but then I educated myself on LMD and I’m not quite sure whether our current reality is any better.
She is unable to walk by herself and even assisted walking is a challenge because her legs aren’t strong enough to support the upper body and muscle memory has faded, so she needs to relearn how to walk, right after we improve her strength and mobility. Occasionally, I pick her up off the floor after she’s done melting into it, sometimes 3 times in one day, when no one else is around to help. But we’ve developed a system where I get her up onto a chair first, then up on her feet from there. So far, it’s been working, though my body is beginning to feel the intensity of the physical load. I have also dragged her across the floor on a blanket to make it easier to lift her onto the couch or chair (EMT training a while back proved handy, too).
She is still unable to keep most foods down, despite the anti-nausea patches and pills. Her sense of smell has been diminished (though some sensation is coming back), so she no longer takes pleasure in tasting some of her favorite things like coffee, wine (because why not?), or carrot cake. Her stomach turns into a raging Godzilla when empty and throws up anything that hits it in a fireball of vomit.
Her cognitive function has declined significantly. Most of the time it seems that she is not even there, almost like a huge black hole has swallowed her cerebral cortex. She has an obscure perception of time, confusing minutes with hours and days with years. Short-term memory has been impaired to the point where sometimes she doesn’t remember events from a few minutes’ prior. She doesn’t recall conversations, at times she even makes them (or parts) up, mistaking people while at it.
With these critical parts compromised, it’s hard to watch Mama go through the valleys, though I have been celebrating every little victory, whether that be her getting up off the couch with minimal assist or drinking an entire protein shake. I try to motivate her to fight through, but I am clouded by my selfish desires and needs, so truthfully, I no longer know what is, in fact, best for her. I ask about her wishes frequently, but she oscillates between her discontent with life and desperation to live.
CANCER MAKES OR BREAKS RELATIONSHIPS
My mom’s needs have dictated the many roles I have acquired over the last few months. I have become her nurse, chauffer, nutritionist, caregiver, advocate, therapist, trainer, and even verbal and physical punching bag. Throughout all this, our mother-daughter relation got neglected, and this is very difficult because most of the time now I think I no longer have a mom. She no longer reaches out for my hand to show me compassion. She no longer opens up her arms to invite me in for a hug when I need to feel like her little baby. She no longer takes interest in my life by asking what’s going on in my social and romantic relationships, school, or plans for the future. She no longer calls or texts me to gossip or tell me about her day (I guess I am her day now, though). She no longer spams my Messenger with recipes, home-hacks, memes, or relationship jokes. She no longer listens to me, advises me, and yells at me when I need a reality check.
My relationship with my mom is not the only one that has been affected. This journey has changed my relationships with the rest of my family, my partner, and some people I considered great friends. People who promised me the most gave me the least. In the most challenging time of my life, I felt abandoned, like a lonely sail caught in a storm on deep water. Even though I’ve met a multitude of amazing and kind-hearted people who I wish were my family, and I’ve strengthened relations with a selected few family members, I’ve found myself in a great deal of solitude, which to most probably carries a negative connotation, but solitude has proved to be constructive.
The most important relationship one can have is with oneself and I’ve been able to establish and strengthen that for my own sake. I have become much more aware of my emotions and found ways to cope with the negativity around me, projected mainly by my dad, but also all the “Sorry’s” and mopey faces from almost everyone around. Because I’ve felt deserted, I resorted to faith and I’ve enhanced my spiritual presence. I’ve found the courage within to lead my own path without relying on anyone else for my overall wellbeing, and this has been the most liberating experience. It almost approaches a dangerous territory of exclusivity, but I’m lucky to have many like-minded souls around me who share in the understanding, and I am balancing my need to vocalize all these feels and concerns with those willing to listen, too.
ATTITUDE IS A CHOICE
Optimism and realization of my inability to control anyone or outside circumstances are what’s gotten me thus far.
Aside from the first couple of days after diagnosis, when I went into physical, emotional, and psychological shock, and occasional weak moments, I have worn my game face and radiated positivity. I’m sure the medical staff, at least at the first clinic, thought I was drowning in delusion that my mom will survive this disease, and maybe they’re right and I am delusional because sometimes I feel like this is all just a dream that I get to wake up from to find my life in perfect order. But no such thing.
The reality is, we are all dying, my mom just has a shorter route available. If I let the pain and fear of losing my mom, my dearest friend, and my everything, swallow me, the same or similar fate would await me. Simply because my glass is half full (actually, it’s fully full), doesn’t mean that I have an easy time processing all that’s happening. I feel anger, anxiety, guilt, frustration, and helplessness at the same time as I feel peace, joy, love, gratitude, and hope, but it is the latter that I choose to focus my attention on.
I feel my mom’s potential to get through this in my bones. I’ve provided her and my entire family with the tools to get out of this rut: I have found a cancer center with an outstanding and caring physician and team; I have gotten prescriptions for off-label drugs to target aforementioned cell mechanisms; I have found and hired an employee for my parents and quit school so that I can converge my full attention on Mama; I have found a doctor of naturopathic medicine, a therapist, and oncology nurses specializing in cannabis utilization in cancer treatment, to provide remedies outside of the limiting conventional medicine; I have demanded physical therapy and all medications and supplements necessary to get Mama back on her feet, even the home IV hydration set up; I have been exposing Mama to meditation, hypnosis, and mantras for healing to improve her mindset and spark some optimism in this chaos; I have acquired necessary aids, like a wheelchair and walker, cookbooks and nutrition guides to alleviate some of the physical limitations; I make regular runs to dispensaries in order to make cannabis extract in my little garage lab; I flew to Phoenix to St. Charbel’s shrine who, in Catholic beliefs (whatever you believe, just know that spirit is spirit), is a patron of the sick, and whose healing miracles have been reported numerous times; I’ve located a community of LMD patients, some of whom have achieved stability in their disease process for 1, 2, even 6 years and are still here; and I haven’t even exhausted my fuel tank just yet, so there’ll be more ways that I will think of to help.
Whether or not my mom or family utilize these tools is out of my control and letting go of the conviction that I can change their reasoning and behavior was extremely difficult. I have finally come to realize that we all have free will and make our own choices, however constructive or destructive they may be. I cannot force my desires onto others, I can only lead by example and accept that not everyone will follow in my footsteps. It’s okay to lead a life others neither understand nor want.
I STILL HATE CANCER
This goes beyond words and cuts deep through the soul – I f*cking hate cancer and I’m not even sorry for the language! It took my grandmother 20 years ago and it’s trying to take my mother now. It’s taken time out of the most beautiful years of my life (thus far) and it’s given me experiences NO ONE this young (or no one at all, in fact) should have. It’s given me some of the most painful memories in one of the most beautiful places, a place that I chose for my happiness. At the same time, it’s given me a reason to question the meaning of life and find the beauty even in the most trying of times. It’s given me motivation and inspiration to actually live out my values and commit to doing greater good, if not for the society, then for myself going against the grain. So even though I hate it, this demon altered my entire life and is propelling me into the war I didn’t even know I was destined to fight.