Grieving My Mom
By Sarah Coff
As shared on Medium.com
1. Getting diagnosed
It was early April of 2020 — the height of the pandemic and I was in a sleep-like state in my childhood bed when my sister screamed “Help” at the top of her lungs. With a healthy dose of adrenaline, my legs jumped into action and before I knew it, I was beside my mom who was laying on the ground.
My sister, dad, brother-in-law, and I were surrounding my mom as she looked up at us saying she’s fine. This was unusual for my mom but with the anxiety and stress from COVID, she had me convinced.
Her symptoms
In the following weeks she began noticing dark urine, yellow in her eyes, and intensely itchy skin. After getting blood tests, her doctor called her saying she needed to be in the hospital and that she wasn’t safe at home because could have liver failure.
At this point, I was concerned but thought it was something minor — a fluke. My dad dropped her off at the hospital and stayed around for a few hours for what he thought would be something insignificant. Perhaps a gallbladder stone or something.
The aftermath
This was mid-April 2020, nobody was stepping foot into a hospital unless absolutely necessary and they certainly weren’t allowing guests. After a couple of tests, and scans they diagnosed with Cholangiocarcinoma, also known as, bile duct cancer and was given months to live. She was alone when she got that diagnosis and we later found out over FaceTime.
I felt absolutely sick. I couldn’t eat for days. My stomach was in knots because my mom, my best friend, was diagnosed with a terminal disease. After 5 excruciatingly long days alone in a hospital, we got the green light to pick her up. Her skin was jaundiced and she was the thinnest I’d ever seen her. She felt like a stranger entering our house. I wanted my old mom back, the one that was healthy and would live forever.
The fight
Back at home, my now husband, sister, brother-in-law, and dad cleaned up the house and did whatever we could to make her comfortable. As she entered the door, she said, with conviction, “I’m going to be here for both of your weddings and to see your children grow up”. She accomplished the first part.
For weeks she refused to eat or look at anything yellow because of her jaundice. It happened so gradually that it wasn’t until she after she got home that I even noticed. My new purpose moving forward was to make sure she felt comfortable and to ease her anxieties. As someone who has always dealt with health anxiety, I couldn’t imagine what was going through her head. I was in full-on fight mode, I was ready to take on the pain, suffering and do whatever I could to fight for my moms life.
Starting treatment
After her first dose of chemo, she came home with a lot of energy and seemed shockingly okay. She handled it like a champ! But then a few days later, she started having chills. We brought her up to bed to rest. We knew she wouldn’t be feeling great, I mean after all, chemo is poison. I laid with her giving her fluids and made sure she ate scrambled eggs with toast (my specialty) but we weren’t having any luck. We took her temperature and saw it crept up to 102. We drove her to the ER while she was in the back, lifeless.
After discovering her infection, they gave her the necessary antibiotics and ta-da she was better. For months, she followed this unruly routine: chemo on Monday, fever on Thursday/Friday afternoon and hospital through the weekend. Let’s just say we spoke to her doctor on Friday afternoons more than anyone wanted. We were on a first name basis.
Between the chemo, fevers, losing her hair, stent replacements, etc it was a rough 4 months. But she had hope — we all did! Despite her prognosis and bouts with infections, she always remained hopeful and positive. She welcomed the chemo into her body, and thanked it for attacking the tumors. Who thanks chemo!?! My mom, that’s who. My mom was filled with gratitude — for us, her care team, the people supporting her and we all felt confident she would beat this. And she did, once.
She started energy medicine which allowed her to gain control of an awful, uncontrollable situation. I wouldn’t describe my mom as ‘woo woo’ but the energy healing wasn’t just giving her peace of mind, but shortly after starting it, her fevers were gone. This was the start of her spiritual journey.
Next stop: surgery
After getting her scans back, we heard the good news we were all waiting for, which was that her cancer shrunk enough to meet with the surgeon to discuss removing the tumor in her bile duct. We were on the way to remission! We could breathe again.
The surgeon wanted my mom to be in the best possible shape going into the surgery, so what’d she do? Go on several walks a day, hikes, eat clean, continue her energy healing, repeated her mantra, and most importantly, stayed hopeful.
The morning of her surgery, my dad, sister, mom and I left the house at 6 AM to drop her off at Penn. I gave her the biggest hug I could manage. The surgery could go one of two ways. He would either be able to remove all the cancer and she would be cancer free or it would be too dangerous to remove the tumors and he would have to suture her back up. We all went to my apartment in Philly to wait. Once it hit 4 hours and we didn’t receive a call, we were cautiously optimistic.
Her surgery ended up being 7 hours long. They removed 40% of her liver and it was a success! Later that night, we video chatted with her and got to see the raw emotion on her face when we told her that she did it and she was cancer free. I’m not sure if I’ll ever feel joy like that again, but I hope so!
She beat it
That night when I got into bed after the longest, scariest, but happiest day of my life, I bawled. First they were tears of joy and then I finally felt as though I could release all of the fear that I cautiously hid. After weeks recovering in the hospital, a few rounds of radiation, and an oral chemo medication, she was in remission and life felt bright again. My mom, the fighter, won.
2. It’s back
From February — September of 2021, my mom was learning to enjoy life again. She had lingering side effects from the chemo, like tingling in her feet and toes and a metallic taste in her mouth. But, besides that, she tried to separate herself as much as possible from being a patient. She just wanted to look forward to what’s ahead and so we stepped on the gas pedal.
After her last appointment in February, her doctor wanted to see her in 6 months. We enjoyed those next few months down the shore, prepared for my sister’s wedding, and adjusted to our new normal. My mom was a cancer survivor, it felt freeing.
Here we go again
The weekend before her scan, I was down the shore and my mom was in a bad mood. I knew she was nervous for her appointment, I was too! We distracted her as much as we could leading up to that scan — the scanxiety was REAL.
We got the dreaded news that her cancer was back and spread to her spine. At this point, it was considered metastatic. I thought we were done with this bull****. She beat it already. Until this, I never imagined a life without my mom. I felt broken just thinking of it. It would be a pain that I felt would defeat me. I shook my head and re-entered fight mode.
3. Living
The following year was pretty low key. Between her treatments and doctor appointments, my parents were navigating this new normal. For the most part, my mom felt okay and they enjoyed biking, going on a few trips, being with friends, and spending time down the shore.
Unless you knew her, you wouldn’t know she was sick. My mom was full of life and carrying on the best way she could. Her gratitude for us and life became even more noticeable. For someone who has gone through so much, she never once felt sorry for herself. She focused on the positives — that was my mom in a nutshell.
4. Wedding
My wedding was the best distraction for her. It was something we could talk about that would take our minds off of our reality. The weeks leading up to my wedding, my mom was clearly in a lot of pain. While we got a tour of our hotel, my mom turned to me and said, “I don’t have cancer this weekend”. She had a limp from what we later found out was a tumor growing in her femur.
Despite it all, she walked me down the aisle at my wedding on October 29th in 2022. She danced until she couldn’t anymore and it was a beautiful weekend with everyone we loved. But sometimes when I look back at the photos of us arm and arm making our way down the aisle, I see tears in her eyes. I’d like to think they’re happy tears but some days all I can see is pain.
5. Staying afloat
The week after my wedding, my sister and brother-in-law ran their first marathon in New York City to raise money for the Cholangiocarcinoma Foundation. We cheered them on and celebrated all weekend. My mom was ridiculously proud of them — we all were!
I’m going to keep this part short because the next few months sucked. My mom got surgery to stabilize her femur and we all thought, naively (or optimistically) that she’d be back to normal within the next month or so. She had to stop treatment because her body could only handle so much and she was still recovering from her surgery. She was slowly but surely getting there but without treatment, her tumors relentlessly kept growing. My mom was (somehow) still in pretty good spirits. Was she thrilled about her situation? Hell no but she was adapting.
A new normal
Once the vomiting started, she kept losing weight and became weak. At this point, she wasn’t able to walk without her walker. Seeing my mom shed weight so quickly and lose her stamina was cruel after everything she had been through. We felt like we couldn’t catch a break.
We threw her a 62nd birthday party mid-January at my parents house with her close friends, a bagel and lox spread and a bunch of blow up balloons. I did her makeup, put her hair half up half down, and helped get her dressed for her big day. This was a memorable day for all of us!
6. Orange Juice
Hearing the doctors say, “Your mom is very sick” in the emergency room while she was laying there felt like a stab straight to my heart. Ever since she was diagnosed, we did our best to protect her from the realities of this cancer. She never looked anything up online about cholangiocarcinoma.
She didn’t want to look at the tumor growth on her scans, begrudgingly spoke to palliative care, and took the smallest amount of pain medicine. She had hope, and it’s that hope that kept her alive for 3 years. That and the incredible care she received from her care team.
Two weeks before she died
Although he wouldn’t admit it, my dad needed a break from being a full-time caregiver to my mom. He was doing everything for her and after I would go over for a few days to help, I couldn’t wait to leave. I felt awful but being there was so depressing.
So anyways, my dad had a trip to Florida booked and the plan was for me, my sister and mom mom to stay with my mom to help. She had a fever that weekend and wasn’t feeling great but at this point, we were used to her not feeling well and not leaving her bedroom.
I knew she was sick before getting my parents but wasn’t aware how ill she truly was. I later found out that my dad didn’t want to go on his trip but my mom said she would be mad if he stayed.
Survival mode
I crawled into bed with her around 5 am after my dad left for the airport and noticed she was struggling to breathe, sweating profusely, and unable to communicate clearly. I’ve dealt with my moms fevers, surgery recovery, broken femur, and vomiting, but this was new. I was so scared. I remember thinking how is this happening? What now?
My dad was away, my mom mom was sleeping in the other room and I stayed up with my mom bringing her wet wash cloths and giving her water to keep her fever down.We made it through the night and I felt the tiniest bit of relief because she said she was feeling better that morning. I didn’t think she was going to make it through the night.
The next day
I was training for a half marathon and did a 7-mile run with my husband that day, which is the longest I had ever ran. Which is something my mom would usually be so excited about but when I got home, all I got was a, ‘nice babe’. That night, I heated up chicken noodle soup for my mom and then me, my sister and mom mom watched the Grammy Awards. I knew my mom wasn’t okay but also didn’t want to scare her. I asked if she thinks going to the ER would be a good idea but she shook her head.
That night I slept next to her which would be her last night in her bed at home. That morning she had an appointment for radiation on her pelvic bone because the cancer had spread there. It was relentless. We tried getting her ready that morning but she wasn’t able to stand.
Mission get my mom to Penn
At this point, we knew we had to get her help. We had a mission to get my mom to Penn Hospital. She couldn’t walk downstairs so we only had two options. 1. Call 911 which would bring her to a local hospital or 2. Figure out a way to get her in the car and drive her to Penn. She wanted to be at Penn. I brought her downstairs on my back. I had the most precious, loving, yet fragile cargo on my back. We quickly packed her an overnight bag, got her into the car, and I sped on 95 like my moms life depended on it because it did. I remember looking over at her in the passanger seat hardly conscious. We played music, talked to her and kept telling her that she would feel better soon.
From this point on, it was a mad dash. My sister ran out of the car to get a wheelchair and she was on her way to getting the help she needed. I felt a huge sense of relief knowing that we was now in the best possible hands. She could hardly keep her head up and was desperate to get out of pain. I was my moms advocate — I wasn’t leaving her side. She needed us.
I thought it was another fever where she would get antibiotics and be on her way. I wasn’t ready to let her go.
The ER
The doctors came in one by one to do tests, and my sister, mom mom, and I stayed out of their way. After hooking her up to fluids, she felt noticeably better. She danced in her hospital bed to “I Found Love” by Deniece Willams. Her feet swayed back and forth to the beat and she smiled as big as ever. At that moment, I was so proud of us for getting her to the hospital. Getting her what she needed to feel better. I didn’t want to think about what would have happened if we didn’t.
The doctor politely asked us to step outside and when we came back in she told us that my mom doesn’t want to live without a quality of life. My mom always said that she would fight this cancer with everything she had until she couldn’t fight anymore. Her perseverance and optimism was unmatched.
Going the comfort route
My mom had been living in pain for the past year but the last 3 months were tortuous. She was in constant pain, unable to keep food down, losing weight, she hardly resembled my loving outgoing mom. The doctors told us her situation was complicated and there wasn’t much they could do for her because she had sepsis. Her body said, “That’s it, we’re done.”
As soon as we told me dad we went to the hospital, he flew home and met us in the ER. Once we were all on the same page that she was going the ‘comfort route’ she said she wanted us to hold her hand and play music. It all happened so fast. We wanted her last days on earth to be as relaxed and meaningful as they possibly could. She deserved to leave this world in peace.
The morphine made her say some hilarious things which helped because it was feeling pretty grim in that room. I wrote down a list of the funny things she said over the next few days.
- “This water sponge is delicious”
- Her saying bless you to people sneezing in the hallway
- “I want ginger ale — the hard stuff”
- Calling morphine ‘moofie’
- When her oncologist came in and gave her a hug she said, “I’m hugging a star and can I tell you something? I’ve always liked your socks.” We cried with laughter from that one.
- She hadn’t had orange juice in so long because the acid hurt her stomach. She had some of the hospital’s OJ and then we got her some fresh pressed OJ from whole foods and she said it was the Tesla of orange juice.
- Asking my dad, “Howard, do we have a boat, I keep having dreams I’m in a wooden boat.”
- She also thought my black sweater was my dog soba. She would wake up saying, “Is that soba?”
The waiting game
This was the happiest we had seen her in a while because she wasn’t in pain anymore. Knowing how much pain she was in makes me feel sick. If I’m being honest, anytime I think of the pain she endured, I quickly try to distract myself because it’s unbearable.
The next week was the longest week of my life. Once she was asleep and not waking up, we knew all we could do was wait. At least when she was up, we could talk to her, hear her voice and enjoy our last cuddles. But when she was just laying there in limbo, the only thing we could do was wait for her body to stop.
The doctors don’t share when it will happen because they don’t know but it’s a different type of hell watching your mom in this almost-dead state for multiple days. The doctors kept giving her morphine to speed up the process but it was out of their hands. In those following days, we paced the hallways of the hospital, ate the cafeteria food, went for walks, and waited. We ended up watching the Superbowl in the hospital room with my mom. She wasn’t ready to let go.
The next day she took her last breath. I kissed her cheek, pulled the sheet over her head and we got the hell out of there.
7. Eulogy
Something they don’t tell you before your mom or loved one dies is that you have approximately one day to prepare a eulogy. My mom passed away on February 13th and the funeral was February 15th. Besides being incredibly sad, pissed, and a million other emotions, I had to write a speech. That was rather stressful. I wanted to make her proud, spill my heart, and speak eloquently in front of everyone. Re-reading the eulogy, there are definitely things I would change but considering I wrote this the day after my mom died, I did alright.
I’m Sarah, Caryn and Howard’s other daughter. I want to take a moment for all of us in the room to close our eyes and think about a favorite memory of my mom.
My mom would always say that if we were the same age we would be best friends and I will always consider her my best friend. Nothing made her happier than being a mom.
I’m gonna read a text that my mom sent to my sister and me last year on Daughters Day.
- Good morning, I didn’t post anything for daughters day on Facebook but wanted you to know I celebrate daughters day EVERY day because you two make me the happiest mom!!! I am so fortunate to have two loving, amazing, supportive daughters!! Nothing makes me happier than spending time with you and seeing how close you are. You are the best gift ever that keeps on giving me so much joy in my life!!! I love you heaps to the moon and back infinity times!!!
I’ll forever cherish having my mom as my sous chef, getting pedicures together, getting calls from her asking which spices to use when cooking, going to barre and yoga classes together, and hiking. I’ve always admired my moms strength and resilience — she’s gone through so much yet always remained optimistic.
A favorite memory is her sitting on the beach (under an umbrella, of course) eating an ice cream sandwich, her feet in the sand, listening to music surrounded by family. Continuing to live each day without you, mom, is unimaginable but I promise that we’ll continue making you proud.
8. Austin
Coincidentally, my husband and I had a trip planned to Austin less than two weeks after my mom passed. I really didn’t want to go. I wasn’t ready to leave my safe bubble being with my dad and sister. I was still deep in my grief and while I do love live music and tacos, I wasn’t ready to travel. Since we booked the flight with points, and I couldn’t move it, we were forced to go. I figured my mom would want us to go.
As soon as I left Philly, I felt a little lighter. It felt good getting away, pretending life was normal for a few days. It was starting to settle in that she wasn’t a phone call or text away. And yes, I know that she’ll always be watching over me and in my heart, blah blah blah, but you know what, sometimes that’s not enough.
Austin gave me the confidence I needed to know that life without my mom could exist. It wouldn’t be nearly as warm and comforting when she was in it, but it was possible to enjoy life while grieving.
9. Five months
Grieving has been desperately finding ways to feel a sliver of my moms presence. I’ll eat her favorite sandwich, wear her pajamas, hang up a painting that reminds me of her smile, clean the kitchen the way she liked it, watch videos of her, listen to her voice in my head, adapt her quirks, imagine her in a crowd of other moms, feel her arms wrapped around me, walk in nature, eat an ice cream cone, walk on the beach, cook meals she made for me, re-read notes and birthday cards from her.
I find that I’m desperately clinging onto everything I possibly can of hers. I’m scared my memories of her will fade with each passing day. Am I going to remember how it felt to be hugged by her? How would she respond in a conversation? The comfort of her listening to me ramble about my day?
Grieving is complex and it still finds a way. It’s confusing because my grief can exist along with feelings of gratitude, enjoyment, and excitement. I used to think grief was solely tied to being sad and depressed. It’s not black and white.
10. Memories
After my mom died, I got several texts and messages along the lines of, “May your moms memory be a blessing”. At first, this pissed me off because I just lost my mom and the memory of her wasn’t going to cut it. I wanted her to be with me, not just her spirit.
But her memories are what have carried me through this year without her. Hearing her voice in my head, wearing her jewelry, eating her favorite foods, visiting places I went with her, watching shows she loved. Watching videos of her, re-reading texts and emails, imagining the advice she would give me, the huge smile on her face when we talked, and the list goes on. My friends, husband, and family help keep her memory alive, too. I love getting a text or message from them saying something that reminds them of my mom. She lives in all of us.