My mom left her body just over three months ago. Ever since it happened, I’ve known I wanted to write about it, but I never knew where to start. I’ve always taken great comfort in writing. I use it to process everything I go through, both good and bad. I wrote plenty leading up to my mom’s death, about the fear of what was to come and the thought of life afterwards. But once she passed, all I could manage to get out of me was her eulogy. And that took almost everything I had. Ever since her funeral, I’ve avoided putting pen to paper (or font to screen). It’s seemed daunting for some reason. I also haven’t meditated since she died, because I’ve been avoiding what images would pop into my head when I’m sitting silent and alone. And I think that’s where I need to start - I need to write down all the things, in detail, that people don’t talk about when it comes to death and cancer. What it sounds like. What it looks like. What it feels like. How long it takes. What comes after. I need to get it all out, because no one ever warned me how horrific it would be. I’m not sure it would have made anything better if they had. It may have made it even worse. I already had crippling anxiety for 3 ½ years leading up to her death, and I don't know how much worse that would have been if I had some preview into the world I was about to endure. But now that I’ve come out the other end, I need to process it all. And I would like to share it with people who have either gone through something like this, or may go through it at some point in their lives. Because if you’ve been through this, then I guarantee you can sadly relate to some of the dreadful things I’m going to write about. And if nothing else, it’s nice to know someone else out there has felt this pain before.
As a background, my mom’s cancer journey started in 2015 when she thought she found a lump in her breast. Her OBGYN insisted she get a chest scan, and while the lump turned out to be nothing, they noticed a microscopic dot on one of her lungs. That little dot turned out to be stage 1 lung cancer, which is rarely ever caught. Normally, lung cancer isn’t detected until the person is showing symptoms, and at that point it’s almost always too late. So my mom, a non-smoker, had lung cancer. The doctors performed a lobectomy (where they remove an entire portion of the lung), and told her they had gotten it all out. The next part will haunt me for the rest of my life, because I’ll never know the truth, but apparently they said that she was fine and that following up with chemo was optional. (That is my mom’s version of the story. I was a sophomore in college and wasn’t really asking questions.) My mom, a seemingly healthy, young, strong woman was clearly appalled at the thought of going through chemotherapy, so we went on with our lives. She continued to get scans, but no further treatment was performed. Fast forward to Christmas day 2016, and I looked at my mom and said to her, “I think you did your makeup a little funny today. One of your eyes looks a little bigger than the other.” The difference was so miniscule, it was something only a daughter would notice. But unfortunately, it was not her makeup. I had noticed the first sign that her cancer had actually metastasized to her brain. All that time we thought she was cancer free, while she wasn’t going through any treatment, the cancer was actually spreading through her body and eventually causing her death. It took eight months of tests from that day to figure out she had cancer “again.” It wasn’t really again, but that’s what it felt like. Eight months of spinal taps (she had 3 or 4), MRIs, CT scans, and eventually a brain biopsy the day before my 22nd birthday to finally determine her diagnosis. And all that time, her right eye was drooping slightly more each day, as well as her nose, and then her mouth. Her face was starting to look like she’d had a stroke. I’ll never forget being in that hospital waiting room with my family and my boyfriend at the time, and hearing the doctor walk up to us and tell us he found a tumor. All we had been praying for during those hours was to not hear those exact words. But there they were, flowing out of the brain surgeon’s mouth without an ounce of hesitation. I didn’t have the heart to tell my mom what we heard when she came out of surgery. None of us did. So for the days? Week? It took for her to recover from surgery and actually meet with an oncologist, I knew she had stage 4 cancer, but she didn’t. I’ll also never forget sitting in that doctor’s office in Miami with my mom and her best friend. He sat down, looked at my mom, and told her she had leptomeningeal carcinomatosis. In other words, lung cancer that had metastasized to the linings of her brain. She had 13 tumors in her head. It was inoperable. Incurable. And she had less than 5 years to live. We just sat there dumbfounded. What do you even say to that? The doctor then asked her to get up and try to walk in a straight line, the way a police officer would for a DUI stop. She couldn’t do it. She couldn’t keep her balance even then, and that was day one. I’ll never forget seeing the look of sadness and shock on her face when she realized what was happening. She kept saying “no wait I can do this!” and trying again, but it just wasn’t possible. The tumors were affecting her balance. The heartbreak I felt in that moment is still with me today. He then told us she needed to start radiation immediately, and the very next day she had her first full-brain radiation. That was the beginning of the end. Full brain radiation is not typically something doctors like to do. It has a slew of long-term side effects that can sometimes outweigh the benefit. But my mom’s case was so severe that this was her only option to begin slowing down the tumor growth, so we did it. I can still hear her voice in my head when she screamed out “Jess!!!!” from her bathroom a week or two later. I was in my bathroom across the house, and I ran to her. And then I saw her staring back at me with a sink full of her hair. You know that will happen, but you don’t know what it feels like until it does. My mom was a beauty queen. An absolutely stunning woman. And there she was in her all white outfit, with her black hair covering every inch of it. I didn’t know what to do or say, so we hugged and cried and accepted our new reality. I knew she was horrified, but I assured her everything would be okay. That was the first day it really felt like she had cancer. Next came the day we really needed to pull the trigger and shave her head. I rushed home from work because her hair dresser had come to our house to do it. I got there just in time, and we sat in her bathroom and shaved her head. We tried to make it lighthearted and less traumatic. We blocked her from the mirror while we did it, and then I watched as she saw herself for the first time. She let out a shriek, but then we all smiled and laughed about how perfectly shaped her head was. If anyone had the head to be bald, it was her. She somehow looked adorable. But she also looked like a cancer patient. The months and years that followed contained so many different surgeries, treatments, pills, IVs, hospital visits, chemos, radiations, fainting episodes, falls, memory losses, false hopes, disappointments, and breakdowns that I would never be able to list them all. But outside of that, my mom never actually got over the heartbreak of how much her face had changed. Nothing rips my heart to pieces more than thinking of how much she hated her reflection in the last years of her life. She would call herself an ugly freak constantly. How would you feel if the person you loved most in the world kept saying that about themselves, and nothing you said or did could change their mind? I tried so hard to tell her how beautiful she was, but it didn’t matter. She was clinging so hard to the person she used to be that she was never able to accept her body’s new form. It’s extremely easy for me to say this from the perspective of someone who hasn’t gone through a drastic physical change, but it killed me to see her not be able to accept that reality. My mom and grandma were in denial for a long time after her diagnosis. My mom tried carrying on her normal life for as long as possible. She was constantly going out to lunch and dinner with friends. She even got a job offer. She’d casually say things like “I don’t have cancer, they got the diagnosis wrong.” And that would absolutely crush me. Because I knew in my heart she didn’t actually believe what was happening, and I had to be the one to keep convincing everyone that this was real. And that it was only going to get worse. And my god, did it ever. But this was a slow-moving cancer, so it’s hard to imagine how bad things will get when you still feel pretty normal. I lived at home with her for another year and a half. It got to the point where we both knew I needed to move on with my life (I always wanted to leave South Florida), and it was draining living somewhere you don’t want to be, waiting for someone to die. Eventually when I decided to move to Colorado, we both made an agreement that I would move back to Florida temporarily when we knew it was the end. The funny thing is, I always assumed we’d just know when the end would be. It didn’t click in my head that it would have been an intentional decision to stop treatment at some point because it had become useless. I never thought about the call with her where she’d tell me they were stopping treatment. I never thought about the feeling of my heart sinking into my stomach when I heard those words. I never thought about the “well fuck, how long is this going to take?” when I hung up the phone from that call. I never thought about booking a one-way flight to Florida knowing I was flying home to watch my mother die. But that’s what happened. So now to get into the details of watching someone die (this is the hard part). I got into Florida at midnight. My dad picked me up from the airport and was very somber. I got in the car and he said “Jess, I just want to warn you. It’s really bad. I don’t know how long this is going to take, but it’s really bad. Just be prepared when you walk into the house. She’s changed a lot since you last saw her.” Right away I felt the crushing weight of guilt on my shoulders. This pandemic had stopped me from being able to travel back and forth as much as I should have in my mom’s last year of life. She had apparently changed so much in the matter of 2 months since I’d last seen her that I needed a stark warning before I entered my own home. Sadly, my dad was right. I walked into my mom’s room, and she was sleeping next to my grandma. I shook her awake, and her emaciated little self woke up and weakly said “Jess!” She tiredly reached up and grabbed my face and hugged me. I took her to the bathroom and she could barely walk. She was wobbling so much and was so skinny that her clothes were falling off of her. She was wearing her red pajama shirt and her ribs were sticking out. The 10 steps to her bathroom were enough to make her pass right back out when she got back in bed. When I woke up the next morning, I crawled into her bed and cuddled her as tight as I could. I laid there nestled in her chest for over an hour. I knew in my heart that was the last time I’d ever be able to do that. I felt the weight of that realization every second I was snuggling into her bony body. I would put my head on her chest and listen to her heart, and then imagine what it would feel like when I couldn't hear her heartbeat anymore. I think we both knew it in that hour. We both knew we’d never get that chance again, because she’d just keep getting worse. And we were right. That was the last time I’d be able to cuddle my mom like that. My mom’s decline after that happened in the strangest combination of shockingly fast and agonizingly slow. The next day we had our first official visit with hospice. A woman came to our home to assess the situation. She would ask my mom questions and I’d see her struggle to answer. She’d start rambling and getting very off-topic, which was the first time I ever saw her mental decline that upfront. She’d forget where her sentences were going as she was saying them. She’d fall asleep just from us walking her from her bedroom to the couch. At this point she was finally using her walker, which I had been begging her to use for over a year. But now it was too late - in reality she needed a wheelchair for this stage. Once hospice finished doing their assessment, they arranged to have someone there around the clock (on top of my mother’s other caretaker, who had been working for us for months and was there Monday - Friday about 5 hours a day). First, she was hooked up to an IV drip that had to be changed every 12 hours, and this was to supplement the fact that she had stopped eating and drinking. I’d make my mom the smallest bowl of oatmeal, and she couldn’t even finish a couple tablespoons before giving up. If she drank water, she’d throw it up. It was frightening to watch this less-than-90-pound woman not even take two bites of oatmeal and a couple sips of water her entire day. I didn’t think the human body could survive like that, but to my dismay, it can for much longer than we’re taught in school. Every day after that got worse and worse. Friends of hers were desperately texting and calling me daily asking if they could come over. I was so aggravated by these calls, because it seemed to me that people had no regard for what my grandma and I were going through. These were clearly the last days of my mom’s life, and no one was respecting that her last moments of consciousness should be spent with her daughter and mother. I’d let some people come by to say their goodbyes, and warn them of what they were about to see when they walked in: a shockingly skinny woman with barely enough energy to open her eyes and say hello. Or, if she had a sudden “burst” of energy, it would be enough for her to talk for a few minutes before saying something bizarre and hallucinatory. One evening, my grandma went back to her apartment in Boca to get a break for a night. This whole thing was extremely hard on her, and it was taking its toll. So this was my first and only night I was spending alone with my mom once she was in that state. I tried to feed her a couple spoonfuls of vegetable soup for dinner before taking her to bed. It was only about 7pm but she was constantly confused about the time, as she was sleeping over 18 hours a day. I took her to her room after failing to nourish her, and told her we were going to brush her teeth. She just looked at me extremely confused and said, “why would I brush my teeth before I eat dinner?” I will never forget the way my heart sank into my stomach right then. She had no recollection of what we did not even 5 minutes prior. I was terrified that at one point she’d look at me and forget who I was, and I didn’t know how to handle that. It was the first time in my life that I was truly uncomfortable being around my own mom. I didn’t know how to act around her. I didn’t know if I was supposed to correct her when she said things like that, or if it’d only make her more upset. These were signs of the body shutting down, and it wasn’t her fault at all. I felt so helpless. That night I slept in her bed with her, because she couldn’t sleep alone. There was a chance she’d try to get up and walk to the bathroom and fall. I didn’t sleep one minute that night. I couldn’t help but think she’d die in her sleep next to me (little did I know, her death wouldn’t come for another week and a half, and those 10 days would be infinitely more agonizing). She did in fact wake up, and started shouting into the darkness, “Mom! Mom! What are you doing?” I rolled over and said “mom, Meme (that’s what I call my grandma) isn’t here.” And she said “yes she is, she’s just standing right there staring at me.” I was honestly terrified, and I had to correct her and tell her to go back to bed. That was the night I said goodbye to my mother in my head and my heart. I knew I lost her right then and there. Every moment after that would just be waiting for her body to go. But my mom was gone. The days that passed after this were so horrific that no movie or show would ever depict a human life going through that level of suffering. It’s the stuff no one talks about, and it’s what I want to talk about here. My mom of course stopped being able to get up and go to the bathroom. She was completely bed ridden and sleeping almost 24 hours a day. We took her off the nutrient IV at that point, because there was a chance it could drown her. So she was getting absolutely no nourishment, no water, and couldn’t move. Then, hospice said we needed to bring a hospital bed into her room and transfer her to that bed so they could raise up her chest in case she aspirated. So they built this bed in her room, and it was up to us to transfer her over. My mom’s dear friend, a hospice nurse, and I all grabbed different limbs and had to literally pick her up and place her onto this bed. She was so confused and in so much pain, she let out these loud screams that I can still hear in my head. She was so drugged up on morphine at this point, but she clearly hated this experience. Can you imagine being on the verge of death, being in constant pain, having no conscious understanding of where you are, and suddenly feeling people lifting you up and moving you? I hate that I had to do that to her, but we had no choice. Every day was a constant shuffle of hospice nurses coming in and out of our house for their 12 hours shifts, hooking my mom up to things and taking her off, changing her diapers, cutting her clothes so they could lay them over her body since she couldn’t be moved anymore, and reassuring me she wasn’t in pain. Death sounds like doors opening and closing, machines beeping, people sobbing, and phone calls being made. But then my mom really changed, and this is the vision that will haunt me for the rest of my life. Her breathing suddenly shifted from normal breaths to these quick, labored, tiny little gasps. I can’t describe the sound of it, but it looked as if she was suffocating. Randomly these extremely loud gurgles would come out of her throat that I could hear from my room across the house, and I’d come running to her room to see her. But the nurses were always sitting there watching her, assuring me she wasn’t in pain because of all the morphine. Her eyes became permanently open. She had lost the ability to close her right eye long ago, but now both of them were wide open staring up into the ceiling. Her mouth was also permanently wide open. She was gasping for air, staring at the ceiling, and hadn’t had anything to eat or drink in over a week. She looked like a corpse with a heartbeat. I had no idea if she could see or hear me. The sound of those gasping breaths is something I will never unhear. There was one day where I went over to her and whispered in her ear that I loved her (I did this many times a day, every day), and I could see that she was trying so hard to say something. Nothing was coming out of her mouth, but she was trying. And it will haunt me for the rest of my life to not know if she was trying to say “I love you” or “I am suffering worse than humanly possible, please kill me.” She didn’t die for another few days after that. On the morning of December 26th, I woke up and walked out to the dining room to meet the hospice nurse. I looked at her and asked, “Is it going to happen today?” And she just looked back and said, “Yes. Today or tonight. But it’s going to happen. All the signs are there.” I walked into my mom’s room to look at her gasping, wide-eyed little, open-mouthed body still laying there in that hospital bed. Her feet had started to turn blue, which was a tell-tale sign that her body was shutting down. Her heartbeat was ridiculously fast, as it was trying to overcompensate for all the other organs shutting down. I told the nurse I was going in the backyard to read, and to come get me if anything was happening. My mom’s caretaker came outside and said her goodbyes to me, because she knew that would be her last day of work. She left early, and I was left alone with the hospice nurse, my mom, and my grandma. I was reading the Bhagavad Gita over again, and trying so hard to focus on all I had learned about death. About how death is simply the shedding of a body, and nothing more. And knowing that this was her time to go. At about 7pm I walked into her room and sat on the floor next to her bed. I held her hand, which for the first time was ice cold. It scared me to death, because I knew it was finally almost over. I sat on the floor and looked up at my mom gasping for air, staring at the ceiling, mouth wide open, for over an hour. I was crying and begging her to let go. Begging her to shed her body and be done with this suffering. Telling her I’d be okay and that she didn’t have to stay here anymore. Telling her how perfect and beautiful she was and how much I loved her. But when she still wasn’t gone after an hour, I went back to my room and continued reading for a while. Then, around 9:40, I decided to go back in her room. The hospice nurse had moved her chair into my mom’s room next to her hospital bed, because at this point we all knew we were minutes or hours away. The nurse who had been there for the day shift came in and said goodbye to my mom, and then said, “Rest in peace Michele.” I had never heard the words uttered out loud until that point, and it felt like a punch in the gut. I almost got defensive and said “she isn’t dead yet.” But I didn’t, because I knew in my heart that she was about to be, and I needed to accept it. My grandma was sleeping in my mom’s bed, and she knew we’d wake her when it was happening. So I resumed my position on the ground again, looking up at my mom and holding her ice cold hand as tight as I possibly could. Just before 10pm, I saw it happening. I didn’t think I’d be able to tell, but it was so obvious. I watched her mouth as it looked like she was trying to swallow over and over again. Her tongue started to move, and I looked desperately over at the hospice nurse on the other side of the bed. I yelled, “Is this it? Is it happening?” And she calmly nodded her head and said, “She is taking her last breaths.” We shook my grandma awake, and she was sort of confused from being woken up. We kept trying to wake her and finally I just screamed “She’s fucking dying, get over here!” Then I grabbed my mom’s head in my hands, held it to my chest, and just kept saying “I love you” over and over and over. And then, that was it. She was gone. The 3 ½ years leading up to my mom’s death were filled with anxiety. I thought about it every night as I was trying to fall asleep. What it would feel like, what it would look like, what I would be like. I always thought that one day she’d just pass away in her sleep and I wouldn’t be able to wake her up in the morning. I never, ever imagined even a tenth of how much suffering would have led up to this moment. I never imagined that we’d know exactly when she was going to die. And most of all, I never once imagined that the first words out of my mouth after watching my best friend in the world die would be “Thank fucking God.” People also don’t talk about what happens right after death. They don’t talk about how quickly a body loses color. She stopped looking like a human within 20 minutes. Her skin was completely white, and she turned freezing cold within a half hour. Looking at a body after it dies, you realize just how much our humanity comes from our soul. You see that the only thing that makes us look human is the energy we exude. When you see a dead body, you see that it really is just a shell. My grandma wanted to play Stevie Wonder, my mom’s all-time favorite artist, one last time before we called the funeral home, so that’s what we did. We turned the lights on, and my grandma, the nurse and I danced around my mom playing “Isn’t She Lovely.” It was our last happy moment with her even though she had already passed. And then I called the funeral home, and they were there within an hour. That was it. Within an hour, I watched two men walk into my mom’s room with a big black body bag and a gurney. I said goodbye to the nurse who had watched my mom die by my side. I called my mom’s two best friends and told them she died. And then I tried very unsuccessfully to go to bed. The craziest part was waking up the next morning. Silence. I hadn’t heard silence once in the weeks I was home. All I had heard were people talking, crying, doorbells ringing, machines being hooked up, visitors and nurses coming in and out. But now, nothing. She wasn’t in her room anymore. Nurses weren’t coming to stay in our dining room watching her anymore. Friends weren’t coming to say goodbyes to her anymore. It was silent. And the air was so much lighter I could physically feel it. No more suffering, no more gasping, no more beeping. Peace. Preparing her funeral was another thing I had thought about for years. I had always imagined my mom would have a standing-room-only ceremony, with the chapel overflowing with people. Sadly, the pandemic prevented us from being able to have that for her. So instead, we had a very small group of people join us at the service, and the rest was streamed via Zoom. That morning, as I was doing my makeup and putting on my mother’s black dress that I’d always planned to wear, I felt all the anxiety rush back. A wave of it crashed down on me as I tried to focus on the task at hand. I thought I had been relieved that the suffering was finally over, but your nervous system has a way of telling you you’re not as ready as your mind thinks you are. I couldn’t believe what I was doing. I was getting myself ready to bury my mother. I walked into the funeral home with my grandmother, gripping her tightly and helping her stand up. We were led to the waiting room as some of the immediate family arrived. And then the funeral director finally approached my grandmother and I and said, “Would you like to see her?” I don’t think my heart has ever pounded that loud or fast in my life. This is what my nightmares were made of. I had to go look at my mother in a casket. And all I cared about was that they made her look like her old self again. I had picked out the perfect outfit for her, given them all her makeup and multiple reference photos so they’d know how to do her signature smoky eye. But I knew it was never going to really look like my mom. And that’s what I was so scared of. I clutched my grandmother and we walked into that quiet room together. I watched him unlatch the casket and open it up. And there she was. She was cold as ice. She would have died if she saw how her makeup was done. She still looked better than I’d seen her in over a year. But she looked like my mother’s corpse in a casket, and I’ll never be able to unsee that. I’ll never be able to forget him telling me to say my last goodbye, because he was closing the casket and I’d never see her again. Everything that came after that day was the release of all things physical. I had the daunting task of clearing out her entire house and selling it. Choosing to throw away, keep, or donate every piece of my mom’s belongings. Selling the only home I’ve ever known to 2 strangers. It was the most effort I’ve ever put into anything in my life, but it was trivial compared to what I had just gone through. It took me about 3 weeks from beginning to end. And then I got back on another one way flight, this time back to my home in Colorado, and knew that this was the start of a brand new season of my life. There’s no real ending to this story. I live with these memories day in and day out. I think about my mom constantly. I liken her to a shadow following me around. She’s never really gone. I’ll never move on. The whole experience is just part of who I am now. I’ve gone through the worst pain imaginable, and now a tiny piece of me is just slightly different. I’m not phased by little things anymore. I’m not hurt easily anymore. I don’t need to rely on anyone. I’m not searching for anything or anyone. I’m learning to love myself for getting through what I got through. I used to be so scared to go through something like this all alone. But being scared doesn’t change anything. The human mind and body are capable of things beyond all imagination. I’ve learned to trust myself. I’ve learned to lean on myself. I’ve learned my own strength. I’m proud of myself. And I miss her more than words can tell.
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