I’ve often mentioned how the loss of my mother has changed my life, and I’ve said before that one day, I would write about it in further detail. Perhaps it’s because I know that somewhere, there is a person who is slowly losing someone they love to cancer, and they want to know what to expect. Maybe it’s the fact that parts of that day haunt me, 8 years later, but I think it might be the time to write about it. “It” being the moment that has changed my whole world and how I view it.
In the spring of 2005, we found out my estranged aunt had died from breast cancer, and the news hit me hard. My mom asked me why I was so distraught, when my aunt and I had not really had much of a relationship. “My cousins,” I choked. “They don’t have their mom any more….I mean, what would I do if I didn’t have you?”. Losing my parents had been my greatest fear. I had grown up an only child, with just my parents. My large, extended family was 3,000 miles away, and losing my parents had terrified me. To know my cousins were going through that very situation (as their parents were estranged from nearly all of the family) broke my heart.
My mother had been having health issues for quite some time. She had a degenerative spinal disease that caused her significant pain, and had recently been misdiagnosed with Lyme disease,. The doctors were pumping her full of toxic stuff for the Lyme, and she wasn’t getting better. When the misdiagnosis was realized, the doctors then guessed at MS. It was horrible. Shortly after an X-ray on her neck to check on a prior disc surgery, my mother was suddenly going for tests. They were very vague about was going on, and worry started to take me over. I told my dad I knew they were hiding something from me, and that if they wouldn’t tell me, I would pack my bags and drive the 6 hours to their house. My mother was panicked and told him he needed to fly here immediately, to explain the situation, but my dad said he wouldn’t have time. “you know her,” he said, “she’ll make the drive here in 4 hours she’s in such a panic”. My dad called me, not realizing he had reached my office phone, rather than my cell. “It’s cancer. It’s lung cancer, and it’s already spread”. A sound like that of a wounded animal shot from my throat. I got up, walked into my boss’s office and said “My mom has cancer, and I have to go.”
I made the drive that night. There were tears. Oh, so many tears, my mother told me she didn’t want chemo, she would just let the cancer do it’s thing. This enraged me…..how could she give up? I asked her to do me just one favor. I asked her to discuss her options with her doctor, and what to expect from each one. After we went to the doctor, my mother changed her mind. Chemo it would be.
She did well on the chemo. She didn’t even lose her hair. There were some side effects, but I don’t think it was as bad as she had pictured. Her spirits were up. I was in shock, and I struggled to keep it together sometimes. There were days someone would ask how I was and I would blurt out “my mom is dying” and burst into tears. AWKWARD. (I’m sorry to everyone who casually asked me that and got a response WAY deeper than the usual “Good. You?”). My mother even found ways to joke about cancer, and slowly, so did I. It relieved the dark cloud that seemed to linger above. When we were going through some cabinets and closets and commented on how nice some items were, my mom told me she was “saving them for best” (meaning to save them for a fancy occasion). I gave her a raised eyebrow and a smile and she burst out laughing. “I guess best is now!”. She also had me giggling when she lamented “ugh, these steroids! I can’t even lose weight by getting cancer!”. The jokes were the horrible, inappropriate type that only those in their darkest moments can pretty much get away with. But we laughed, because if you weren’t laughing, you’d want to cry. We’d cried an awful lot.
A few months after her diagnosis, I found out I was pregnant. It was a surprise to everyone (including me!) but looking back, the timing couldn’t have been better. My mom became determined she would live to meet her grandchild. While it must have broken her heart to know she would never see him grow up, never experience all the things that others might take for granted, she kept it all hidden from me. We talked daily, and her excitement was contagious. Her excitement grew when my now husband asked my parents for permission to marry me. I will never forget the day she told me that she felt more at ease because she knew He would always love me and take care of me, My mother loved my husband. She saw right into him and knew him to be a kind, generous, and loving would who would be a wonderful husband to me. It made me glad she got to know him. Sadly, she was too ill to see me actually say my vows, but she knew I had found happiness.
For a long time, I prayed. I had never been an incredibly religious person, but I felt I was a spiritual one. I practiced active hope, even wearing a bracelet that I had engraved with the word “hope” to remind me each day to practice hopefulness. I wished. I begged the powers that be. I kept fingers crossed, and toes crossed. I begged for the wisdom to understand not only what was happening, but why and how it could happen. I believed, with all my might, that my mom would get better because dammit, I NEEDED her. I celebrated when the doctors said that the new drug the had given her was working, and that he tumors were shrinking. I felt the crushing of a thousand buildings falling on me when hey told us they had made a mistake. I rode this horrible roller coaster all while being pregnant with my first child. It left me drained, exhausted, and rather bitter. I believed she was getting better right up until the very end, and then I simply didn’t believe in anything at all.
My mom and dad came up the day I had my son. The pride and joy in my mom’s face was unmistakable. She adored him with all her might. She was tired from the drive, and I know it had worn on her, but she would not be denied the joy of holding her grandson. The next few days, it was wonderful having my mom with me, even though she needed to rest a lot. When she caught the nurse giving me a hard time about something, she snapped into action and told the nurse to leave me alone. My mother told the nurse that not only was I a brand new first time mom, but was losing my own mom as well and that the nurse should BACK OFF. I knew at that moment I was going to be a mess without her. I needed my mom.
I drove down to visit my parents several times, and my mom looked well, considering. Mostly she was tired a lot. There was a lot to deal with. My parents had started doing some renovation on their house before the diagnosis. The plan was to renovate, sell, and retire somewhere. My mom insisted the renovations continue. There was an electrician in the house the day the house was struck by lightening. My dad was at work, and the electrician was in the basement when he heard what sounded like a sonic boom, and a ball of fire shot out of the wall. It turns out a bolt of lightening hit the chimney, blowing about 4 feet of the chimney off. Breaks rained down on the deck, destroying some of it. Half of the electrical system in the house was messed up, and a huge mirror in my parent’s bedroom shattered and smoldered. The electrician ran upstairs, threw open the door to the room my mom was staying in (my parents’ room was under renovation) and told my mom what happened. She put on her robe, padded down the hall and peeked at the destruction of shattered glass and smoldering frame. She then shrugged and went back to bed. Her theory was, what good is it going to do to get upset? She had bigger fish to fry.
Hospice was contacted, but my mom still wanted to do chemo, so they wouldn’t come to the house. I guess the whole active treatment thing meant they didn’t come on board yet. When I went down to visit, she was getting visibly frustrated because she was forgetting things, and because she would struggle with certain words. She would ask me to get her something, but when I brought it to her, she would say she wanted something else. It was as if her brain wasn’t putting the words together the way she wanted it to. We got her to laugh about it eventually, but it bothered me, because i could see a decline in her health. The morphine wasn’t flushing through her system well, which was causing some of the confusion. She stopped talking to me on the phone as much as well, putting my father on whereas before she would happily chat for ages. It felt like she was distancing herself. I found out after doing some research that it is common for those in the dying process to withdraw a bit from the living. I took that pretty hard. My mother lost her hair on the next round of chemo. I think that bothered her because she said my dad looked upset by it. I guess up until that point, she hadn’t looked sick, and it was easier to believe she would get through it. When her hair went, it was a visual reminder of how sick she was.
Once I realized that I was in fact going to lose my mother, I became obsessed with looking up signs of death. I didn’t want to be caught off guard. I wanted to know what to expect. Looking back, this was my way of coping with my biggest fear. I read about signs of death, and how the body reacts. I never knew what day it would come, but I wanted to try to gauge if she was doing ok or getting worse. I was several states away from her, stuck working. I had a newborn baby at home, a new husband, a new house. I became obsessed with getting the nursery ready before she died. I don’t know why. Maybe it was a “you can’t go yet, I’m not finished” type of thing. I was exhausted and mentally drained. I felt a shell of myself. I was working long hours. I was at the end of the rope. The distancing, the confusion she was going through were signs I was dreading, the fact she was barely eating or drinking were another sign that things were going south.
I got a call from my father saying that I should probably come down, it was rather late in the evening, and I was physically and mentally just toast. I had been getting no sleep and had worked late. I was so tired I was getting a migraine, I could hear my mother making a strange sort of moaning noise. He said that she had been making this noise for a while, and wasn’t with it. I was afraid to drive 6 hours in the dark with the baby while being so tired and asked if I could come in the morning, or did he think I should come right then. He told me to come in the morning. I burst into tears, and he told me that he needed me safe and that it would be better to come in the morning.
The next morning, I got a call from my dad saying to come right away. I threw random things into a suitcase and left. My husband told me to just go, and he would follow me down with the baby in an hour or so once he could grab the baby’s stuff. I left and promptly got stuck in traffic about an hour from my house. I sat in traffic for hours, My father called to tell me my mom had died while I sat on the George Washington Bridge. I told him I would let family know. I called my father’s job to let his secretary know what had happened, i called my job, While sitting in stopped traffic on the GWB, I called my Grandmother to tell her that her daughter had died. That’s one of the worst feelings in the world. The other worst feeling in the world is knowing my dad went through the trauma of that morning by himself and I wasn’t there, because I hadn’t left the night before. Those decisions haunt me to this day. I had put work first, and that will never, ever happen again.
I sat in traffic for 10 hours. Just when I was getting on the last highway near my parents’ house, there was a multi car pileup on one side of the highway, and a car fire on the other. I’m surprised it didn’t rain frogs. After I finally arrived, I head the story of what had happened. I won’t go into too much detail, because somehow death seems such a private thing. I also recognize that there may be someone out there who is in this same position and wants to know what will happen. Effectively,my dad went downstairs and opened the back door to et fresh air in, and went to also brush his teeth. When he went back up, my mom was on the floor, not on the bed. He tried to pick her up, but her breathing got very shallow, he started to panic, and decided to call hospice. The phone was on the bed, and he was trying to hold my mother up (her breathing would get more shallow when laid flat) while yanking the blanket to bring his phone closer. Hospice told him to call 911. My dad paused..my mother hadn’t wanted to die in a hospital. The hospice worker told him that at that moment, the most important thing was to make her comfortable. My dad called 911, and they took my mom to the hospital, where they tried to make her comfortable. She had a DNR. He was with her when she died. My parents were each other’s best friends. I don’t know how he handled it. I don’t think I could have. I know my mother wouldn’t have wanted me there. She would have wanted to protect me from that memory. I know she would. But it doesn’t erase the guilt I have lived with for all these years that I wasn’t there,
The world laughs less now that little feisty woman is gone, I know I do.
When a parent dies, it changes your world, regardless of your relationship. For most, a parent is your biggest cheerleader, your biggest supporter. They have molded you into who you are, when that person dies. It’s like losing a piece of yourself. You lose one of your biggest cheerleaders, and it is a lonely feeling. If the relationship with the parent is bad, it can often make the child go into a tailspin of “why wasn’t it better?” and a lot of self doubt. My mother and I had had our difficulties, and things hadn’t always been rosy, but we had gotten to a place where I called her every day to chat and catch up. I loved chatting with her and wanted her opinion on everything. She was my best friend. One of the hardest moments was calling her, and as soon as the phone began to rang I realized she would never answer, There’s a scene in a movie called “Everyone’s Fine” between Robert Deniro and Drew Barrymore about this same scenario. I would put a link to it on YouTube but I have yet to be able to watch it without flooding into tears. I am now a member of the club that nobody wants to belong to. Once you’re in, you have a lot of support though.
Grief is a strange thing. People experience it differently. For me it was a slow process. At first, I was overwhelmed with being a new mom (my son was 4 months old when my mom died), a new wife, a new homeowner, and a full time employee. There was always someone, or something that needed my attention, and I didn’t allow myself to grieve in one chunk. It was, cry for 5 minutes and be sad, but then pull it together because the baby just woke up and I have to switch to mom mode. I grieved in tiny doses, and tried not to feel too much at once in case I would just fall apart. After a couple of years, my dad started dating, and eventually remarried. I took that INSANELY hard. I was pretty much a real asshole about it, and because of that, I am still trying to repair and rebuild a relationship with my stepmother. It’s hard, but we’re getting to a better place. I know it makes my dad happy to see me make an effort, and that is what drives me, it took a long time to realize that his new wife in no way replaced nor overshadowed my mom. If anything, it was probably hard for her to come into the situation. It’s not like my father divorced his bitchy ex. She was beloved and passed away, so some folks, like ahem, me, were not as welcoming as they could have been.
I have more good days than bad, I miss my mom every day. I now find moments to laugh, like when I was mulling over a question in my mind and swear I heard my mother’s voice utter a sarcastic response. I laugh at stories she told, and I love telling funny stories about her. I smile when I think of how much my daughter looks like her when she was a little kid, I was thrilled to pieces when I came across an old card I found from her. Some years, on her birthday, I buy myself a little present that reminds me of her. I tell my kids funny stories about their grandmother and show her pictures to them. Some days, when the husband is home to help with the kids, I take an hour to hop in my mom’s convertible and drive it up the coast with the music pumping and the wind in my hair. I remind myself to live. I try to keep her memory alive. I have my regrets too though. I wish I had her voice or image on video. I wish I had interviewed her about her life. I wish I knew more of her recipes, so that when I was missing her, I could make one of her dishes to mother myself a little. I wish I had asked more questions. I wish I had spent more time. I wish I had told the job to go screw and hung out with my mom instead. (They laid me off anyway). I wish I would have rubbed her feet more, and massaged her hands, because she enjoyed that. It’s the little things.
Some questions I get asked:
Q. How long between diagnosis and her passing?
A.about a year and a couple of months. This was way longer than predicted and i believe her attitude had a lot to do with it.
Q. Was she was a smoker?
A. Yup. I used to get bothered by this question, as if people were trying to find a reason for her getting the cancer. I now think that when we hear of anyone youngish dying, most people want to know the “why? What happened?” to know if the same thing could happen to them. My mother denied for as long as I could remember that anything would happen to her because she smoked, after she got sick, she wished she had quit or never started. Look, smoking causes cancer, my mom smoked, she got cancer. I don’t get phased by this question now. I encourage people not to smoke.
Q. Do I smoke?
A. I did. A LOT. I smoked like it was my job. Then my mom got sick and I got pregnant, and I quit. I never went back. Now if I am around smoke, I feel sick and hung over the next day. I don’t understand why I ever did it in the first place. I felt like a new person after I quit.
Q. How hard was it to quit?
A. Nowhere near as hard as you would think. Break it down small. Don’t smoke for 1 day. If you get through that one day, you can get through two. Tell yourself that if you smoke on the second day, that whole first day then means nothing. Once you get through 3 days, you’re in good shape. You’ll need to change some behaviors that you associate with smoking as well.
Q. Which is harder, to lose someone suddenly, or the way I did?
A. My friends and I have discussed this at length. I guess I feel now that losing someone suddenly would be worse. At least we were able to talk openly and honestly about what was happening, and say what we needed to say. It isn’t easy to watch a love one go through an illness like this, but I can’t imagine someone leaving the house and just never coming back without warning. To me, that would be worse.
Q. How is the whole guilt thing going?
A. Pretty shitty. Everyone tells me I shouldn’t feel guilty, and that driving 6 hours with no sleep and a newborn is a positively awful idea. I would agree, and tell anyone in the same boat the same thing. I just can’t overcome the guilt that I wasn’t there when she died. I should have been, even though a part of me knows she wouldn’t have wanted me to see that.
Q. What would I tell other people going through this?
A. Get your loved one on video. It will be priceless to you, even if it hurts too much to watch it at first. A day will come when you would give anything to hear that voice, and if they are on video, you will be so grateful for it. Interview them, make it funny but ask them some interesting questions. Once they are gone, you keep their memory alive. The more you know, the more you can share. Know what their wishes are, what they want done when they die. Lastly, after they have passed, throw a party to celebrate their life. My mother was specific she didn’t want a wake with people marching past her body in tears. Instead, she wanted a party where people drank and laughed and told stories that celebrated her life. We had such a party and it left such a wonderful lasting impression. I had people fill out a card with their favorite memory of my mom. I love looking through them and seeing her through other people’s eyes.
Thanks for reading. If you made it this far you’re pretty amazing. This was a sad post, but one I wanted to write to help others, as well as to find some peace within. Lastly, lung cancer is one of the top killers of women. It is a far bigger epidemic than people thing. I am one of 6 people in my circle of friends who has lost a parent to lung cancer. Not all of them smoked, and most died within a month of diagnosis. My mother was an exception. We need research on battling this type of cancer so that it doesn’t need to be a death sentence.