Am I still an orphan even though I’m 41? My Father died a long time ago, no big loss. But I’ll tell you what: my mom died 9 months ago and it destroyed me. It’s still destroying me. She and I were rarely apart in 40 years. I lived at home. And why not? She was my best friend and I’m pretty sure the only person who loved me unconditionally. But things weren’t perfect between us. I know that. I haven’t put her up on a pedestal. I know she was disappointed in me that I wasn’t doing much with my life, working in a dead end job for 20 years that had no future. I remember catching her looking at me one day and asking me “Do you ever get lonely? Don’t you want a relationship?” I didn’t know how to answer that. I wasn’t (and still am not) a lonely person. I’m not nuts about people and tend to be a loner even though I can be an extrovert around the right people. I’ve not found the person I want to spend the rest of my life with. I barely want to spend the rest of my life with myself, if you catch my drift. I fell in love last year (and I’m still mired in the shitty feelings) but it’s not something that’s going to happen.
About a year and a half ago my mom started getting sick. She went to her doctor who told her she was constipated. He sent her to a specialist who said she had pelvic floor dysfunction, something that often happens to women who have had children.
Sorry, this blog is going to be long but I need to write it down.
She continued feeling sick and was sent to a physical therapist who specialized in pelvic floor dysfunction. Mom had had a hysterectomy years ago but her pelvic floor tightened up and gave her pain. And then the pain became unbearable. She began throwing up. Her stomach became so bloated she looked 9 months pregnant. It’s funny-funny strange, not funny ha ha- how you can live with someone, see them every single day, and not really see them. Not really see what’s happening to them. She was out of energy and run down. Listen, this was a very active woman, always on the go and exercising. She’d been reduced to laying on the couch. A second trip to a specialist who emphatically stated my mother had a pelvic floor dysfunction.
-But I don’t have any energy, my mom told the doctor.
-None of us have the energy of a 16 year old, the doctor replied.
If you ask me, that was an asshole statement to make.
In between these appointments mom went to a gynecologist who I would love, LOVE, to meet with face to face. My mom asked her “Could it be ovarian cancer?” And in a “I’m the doctor here” condescending way she spat at my mother “Why would you think it’s ovarian cancer?” And that doctor didn’t order any further tests. She did nothing.
There was one afternoon when mom was on the couch and I was in the kitchen. She said to me “I don’t think it’s ovarian cancer.”
I stopped in my tracks, my eyes closing, and said “Oh no. It’s not ovarian cancer.” Even though I had been doing research. Standing in the kitchen with my eyes squeezed shut one clear thought like a shotgun blast ricocheted in my head: it was ovarian cancer.
My oldest brother Michael, my mom, and I were roommates at this time. I told my mother she needed to get a second opinion because something wasn’t right. Michael and I compared notes and wanted her to get an MRI because something more than a wonky pelvic floor was going on. There was one night in particular that my brother was the one home to see how bad it was, the vomiting, the pain. He gave her a pillow to scream into. One morning while getting ready for work I heard this faint yell of “Help me!” On two different occasions we had to call an ambulance because the pain was more unbearable than anything she could handle. One time in particular haunts me nearly every day. One night before we called the ambulance for the second time she kept whimpering “The pain is different. This feels different.”
And then the day after Christmas 2017 we took her to the ER where they admitted her and did a few tests. There was a mass on her ovaries. Shocking news, yes. But masses could be taken care of, right? You open someone up, grapple with the unsightly mass, and yank it on out to make sure the human it was attached to leads a good and long life. Yes? That’s what I thought. She was admitted to the hospital that night for the bloating that distended her stomach and made her beyond uncomfortable. They drained so much fluid from her belly it looked like some hipster was coming in to pick up an order of green health juice for everyone back at the office. Ascites, which is a build up of fluid in the stomach cavity and usually doesn’t mean anything good. It was almost midnight when a doctor came into her hospital room. I was the only one with mom. When a doctor comes in, starts talking, and then sits down on the edge of the hospital bed you know it’s not a good sign. I remember sitting in a visitor’s chair, gripping the armrests and hearing a high pitch whine like a mutant mosquito was caught in a holding pattern. What he basically said was finding the mass on her ovaries wasn’t good. No shit, Sherlock. He was gentle and kind or as gentle and kind as somebody can be who has to enter a stranger’s room and deliver devastatingly life changing news. That was the night that everything really began. It wasn’t called cancer, not quite yet. I remember one appointment with a gynecological oncologist who rather off handedly called it Stage 4 ovarian cancer. I think I shook my head a little like a dog who had just run into a table leg. I asked how they could tell it was already at stage 4 when no real testing had been done. The doctor calmly explained to me every symptom my mom had pointed to stage 4. Well, help her point the fuck the other way, thank you.
The blur of plans began: chemotherapy, a biopsy, a chemotherapy port inserted into her chest. My brother and I both filled out FMLA paperwork so we could take turns looking after her. At one point, I was going to take a month off of work and care for her. I didn’t have the money to do that. She was going to take money out of retirement and pay me. I would have done it for nothing.
Things were getting squared away, appointments set up. The idea was that with chemo, we’d have her for a few more years. Chemo, ironically enough, would allow us to have her a bit longer. She went into an outpatient appointment for the biopsy and came home. Her first chemo appointment was in a couple weeks. She was so weak and underweight. Two weeks after the biopsy, she went in to have a chemo port put in. I was at work. My brother Michael had taken her. Mom sent me a photo post surgery showing me her eating toast. Not ten minutes after that I get a call from Michael saying mom had stopped breathing, her lung collapsed. Bless the people I work with. I tell you, I had so many offers to get a ride to the hospital. I thought that was it. I thought my mom had died. I got to the hospital, met up with my brother and talked to a doctor. Tearfully-and more like a 12 year old girl than a 40 year old woman-I asked the doctor if my mom was going to die. She made sure to pat my hand and said no, my mom was being very well looked after. My brother Michael said it was like a scene from that ER show: a code was called and all of these doctors and nurses descended on my mom’s room. My other brother, Ryan, showed up and we all sat with mom and watched her do this bizarre crab claw thing with the hospital blanket. She’d pick at it, make nonsensical statements, ask for ice cream, fall asleep. And why not? I think anyone who stops breathing deserves a nice drug fueled nap. She never left the hospital. She spent a week and a half trying to get a collapsed lung back into working order. The theory is she was so thin and frail that when they put the chemo port into her chest it poked a hole in her lung. My days were filled with going to work, obsessively worrying about her, and going to the hospital after work. She seemed to be in good spirits much of the time but that was my mom. We called her Pollyanna because of her incessantly positive outlook on life. I have a picture of me holding her hand and sometimes I’ll look at it and that time will come flooding back. I know I tried to tell her how much I loved her and how much she meant to me. I know I got out a snot filled “You’re my whole world,” but none of it really did any good. We knew the score. She held my hand one day and said “The biopsy came back. It’s ovarian cancer.” I believe my words were “No fucking shit, mom.” Chemo kept getting pushed back because she was too frail to withstand it. It had still been an option floating around; she’d have chemo like the fighter we all knew her to be. Until one day a couple doctors came into her room and said chemo would be a bad idea. She was too weak to withstand it. And she agreed. The woman who used to see me terrified to go to high school and tell me “You walk in there like you own the fucking place” was done. She nodded along with the doctors, the idea of enduring chemo unbearable to her. Then came the talk of hospice. I think I may have mentally checked out for a bit during this part, no doubt planning my own demise since a life without my mother was incomprehensible to me.
My mom had given up. You have to understand something. My mom never gave up on anything in her life. I watched her in that hospital bed accepting the news she’d be going into hospice. She didn’t even seem to care about her dog who was basically her fourth child and favorite baby. She didn’t want to come home to die and I’m ashamed at the relief I felt at that. I imagined her final days on the couch and me trying to administer enough pain meds to ease her through. A palliative doctor from hospice came and talked with her. I sat on the edge of her hospital bed and tried to act like it was totally normal to hear about how comfortable she would be in her remaining time. Mom asked about death with dignity (assisted suicide) and the palliative doctor said they would make sure she would feel absolutely no pain. And she made good on her promise. I’d never seen anyone in hospice before. I passed my middle brother on my way into her room and he warned me she was really out of it. I thought “Okay. I can handle that.”
I couldn’t handle it. I walked into her hospice room and she was this tiny shape in the bed. She could barely talk and what she said made no sense. It was terrifying to see my bright and funny mother reduced to a zombie. She looked into my eyes but it wasn’t her looking at me. It was the cancer, that gloating, triumphant cancer looking at me. I burst into tears and left. I cried all the way home.
This was at the beginning of February 2018. I’ll spare you the long drawn out month (how ironic that the shortest month of the year turned out to be the longest for my brother’s and I) but after the zombie drugs wore off she was almost her old self. She was sitting up in bed and asking for cookies even though she couldn’t eat. I went after work every day to sit with her. One day I was sitting on the edge of the bed. We were watching the news. Before getting sick mom had become obsessed with Trump and not in a good way. She was too kind to say it so I said it for her: we hoped to be watching his bloated face making some idiotic statement on TV one day and watch him have a massive stroke. Mom was always kinder than me. She’d say “Not a stroke that would kill him, honey, but one where he couldn’t be president anymore.” A commercial came on and she took my hand. I thought it was going to be a sweet moment, maybe one of our last, where she told me how much she loved me and wanted me to go on to live a beautiful life. Instead, she squeezed my hand and said “He wants a military parade because the French president had one.”
I started cackling and I’m sure I sounded insane.
Those first few days in hospice I’d look at my mom and pretend she was okay, that she wasn’t actively dying. Because that’s the thing about hospice: behind each door is a room where someone’s going on their final trip, a journey no one else can follow. My mom was in great spirits-most of that I attribute to the pain meds. We hung out and talked, if she got a craving for Lays potato chips I’d find the vending machine that had them. She couldn’t eat much. The cancer was pressing against her stomach and she’d often throw up. She was so thin and fragile before going into hospice that the doctors said she wouldn’t survive the procedure to put a feeding tube in.
I know it’s a cliche to call nurses angels but the ones in hospice really were. Think of it: their job is basically to make the dying as comfortable as possible as they guide them to whatever’s beyond. And the nurses adored my mother and told us how much she made them laugh and how positive she was even while dying.
Those good days in the hospice didn’t last as I knew they wouldn’t. Her pain meds became heavier doses and she started sleeping a lot. Like an idiot I was sitting with her one day looking at the pain meds IV and wondering why she didn’t have another IV to hydrate her. Duh, Jennifer. There’s no point.
The countdown began the last week of February. She was holding on, surprising even the nurses. I was sitting at my desk at work listening to music when John Lennon’s “Mother” came through my earbuds. I threw on my coat, raced past my boss and said “I have to go. Something is telling me I need to go to the hospital. NOW.” It wasn’t a scene from a movie. I didn’t get there in time to hold her hand as she died. My brother Michael was already there and he had warned me that at times she stopped breathing only to start again. I sat on the other side of the bed and held her hand, the same hand that used to hold mine, the same hand that held mine even as an adult and she would squeeze it 3 times in code: I love you. I squeezed her hand several times. She wasn’t talking anymore, didn’t wake up. I started crying and excused myself to the bathroom. She chose that moment to open her eyes, turn her head to my brother and ask “Am I dying?” He said “Yes.” She asked “How much longer?” Not much longer,” he replied. The last thing she said was “Oh” and went back to sleep.
Two nights later I was watching a movie when a wave of nausea hit me. Ten minutes later my brother called to say she had passed. He came to get me and we went to her hospice room to sit with her for a bit. My other brother and his fiancé were there too. The nurses had left some new age tinkling bell music playing so we switched it to the Beatles. We took turns kissing her temple and telling her things, weeping and telling funny mom stories. She was so thin she looked like a concentration camp prisoner. I sat there and couldn’t reconcile the fact that this was the same woman who could tell if I rolled my eyes while talking on the phone to her, the same woman who would still come into my room in the middle of the night to make sure I was breathing.
And then we left which felt wrong in itself. I know that was just her shell and whatever made her her was long gone but it felt wrong to walk away. My brother and I went home and had a few shots of tequila. I took an unhealthy dose of Xanax and passed out. I would now always see everything as Before and After. I used to joke that if anything happened to my mom they’d have to peel me off the ceiling. She was my best friend, my biggest cheerleader. Our relationship wasn’t perfect and there are things I wish we had worked out before it was too late. But at the age of 41 I feel like an orphan. Most days I feel beyond lost without her. Sometimes at work I’ll start crying at my desk. I know my co-workers would be understanding but I don’t want to be that person so I go hide in the bathroom until it passes. Many people have been fantastic. Others have treated me like it’s something I should be over by now. The truth is I’ll never get over it. It’ll be something that will shadow me for the rest of my life.
I’m not going to say something trite like tell your loved ones how much they mean to you because you never know how much time is left. But I will say this: call your mother. She worries about you.