November 21 was the 1 year anniversary of my mom’s passing. She was an amazing person who shared her gifts with the world – she could craft anything with a sewing machine and glue gun, she was passionate about the environment and sustainable living (she blogged about her 8-year adventure building an off-the-grid home), she meditated and tried to find her inner peace, and she was the best vegan cook I know. We could use more people like her.
We celebrated the day by making perogies in her memory. She would loved that.
Not much has been written about the last year of her life and her battle with pancreatic cancer. In the beginning everything was uncertain and chaotic. In the end, we were too drained and needed time to grieve. Now I feel compelled to tell that story, before I forget. I’ve cobbled most of this together from notes I took, old text messages, her medical records, and a diary she kept. It’s not a happy tale and it won’t bring any comfort to anyone who has a loved one fighting cancer, but maybe there are lessons to learn. I understand if for many this will be too painful to read.
If you’re looking for some takeaways without the details, they are:
- Pancreatic cancer is the most deadly cancer and the survival rates are terrifying
- Be on the lookout for symptoms and talk to a doctor quickly
- Cherish all the time you can spend with loved ones
- Chemo might work for some, but it is devastating
- Alternative treatments are expensive and unproven
- Don’t wait until the end to explore MAID options
In January of 2020 my mom visited BC to see her kids and grandkids. She was healthy and energetic. She walked with Astrid to the community centre and even carried her part way. It’s amazing how quickly things changed after that visit.
Early Symptoms and Diagnosis – March 2020
Two months later she started getting stomach pains. She figured it was just something she ate.
She suffered through the pain for over a week before her skin and eyes started to yellow (jaundice) and she had problems peeing.
On March 19, she reluctantly went to a hospital to see a doctor and they found a lump on her pancreas and a backed up bile duct. They did a biopsy to determine if it was cancerous.
The biopsy results came back the next day and confirmed that she had Stage 2 pancreatic cancer, and likely only had 6-12 months left to live. We were all shocked. My mom was young (61), otherwise healthy, and didn’t have any risk factors other than a possible genetic predisposition.
My grandfather died of pancreatic cancer when I was 3 years old (the same age Astrid was), and my thoughts immediately went to this amazing person that my relatives talk about but I don’t have any memories of. The hardest part of hearing that initial cancer diagnosis was realizing that Astrid was going to lose out in years spent with her Baba. Worse, she might forget her entirely.
Pancreatic cancer is terrifying. Most people who get don’t have any risk factors, so there is not much you can do to avoid it. For most people who are diagnosed with pancreatic cancer, they only have 10 months left. Even if you catch it really early, the average patient only lives for another 3.5 years. It has the lowest survival rate of any cancer.
My mom’s diagnosis came right at the start of the global COVID-19 pandemic. The country had just gone into lockdown. We were struggling with daycare closing, working from home, and coping with the fear and uncertainty that characterized those early days. The weight of my mom’s cancer diagnosis hit me hard. There was nothing keeping us in Vancouver anymore so we rented a car and drove to Manitoba with plans to work remotely, help my dad, and spend as much time with my mom as we could.
I remember talking to mom after she found out she had cancer, and she was remarkably stoic. The rest of us were a mess, but she seemed composed. If her time was up, then she was at peace with that. She had no regrets. She believed in reincarnation and knew she would pass onto her next life where she could work to improve her karma. But the rest of us weren’t ready to see her go.
Whipple Surgery – March and April 2020
The first step in her cancer treatment was Whipple surgery, a complicated and invasive procedure that removes the tumor along with part of the small intestine, the gallbladder, and the bile duct, and then reconfigures your digestive system to work again. I remember calling Cancer Care Manitoba every morning and asking if she had a surgery date scheduled. This was a chaotic time with elective surgeries cancelled because of COVID and I didn’t want her to fall through the cracks. Luckily she got in quickly and on March 26 she had her surgery in Brandon with Dr. Dhalla, who coincidentally did the Whipple on my grandfather 30 years ago as a young doctor. She was in experienced hands.
The operation was successful and they removed all the visible cancer, but the doctor noted that cancer was found in 2/16 lymph nodes they removed and it was aggressive – they found cancer cells on nerve endings and the margin of the vein. Even though she now had Stage 3 cancer, we were still hopeful that she could recover from the surgery and get cancer free. If anyone could beat this surely she could, but it wouldn’t be easy.
The surgery took a lot out of her and she needed 2 weeks in the hospital to recover. She was released on April 9 (her 62nd birthday), and sent home to celebrate and recover with her family. By this point, her home at the Ponderosa was a pandemic retreat for her kids and grandchildren. I’m not sure if being surrounded by loving family helped her heal, but her presence brought us comfort.
Recovery and Normalcy – April and May 2020
It took a few weeks, but mom recovered from the Whipple surgery and things were almost normal. She had to be careful with what she ate and she had extra meds to take (a proton pump inhibitor for digestion and opioids for pain) but she was able to spend a lot of time with us. I didn’t appreciate it at the time, but May was a beautiful month. She did yoga with her grandkids, went for walks, cooked with us, and even helped plant the garden. She wasn’t 100% but she was active most days. Unfortunately, that all changed once chemo started.
Chemo 1 – June 2020
My mom always said if she got cancer she would never do chemotherapy. It was poison for your body and cancer was a disease that could be prevented and cured with diet alone. The fact that she got cancer at all was a blow to that belief, and her doctor convinced her that chemotherapy could give her a few extra years to live. She agreed, but likely only because she thought her family would want her to try her best.
I was still living at the Ponderosa when she went through her first round of chemo on June 3. She was feeling good that day and had slept well the night before. She ate 1/2 bagel with avocado and toast and a cup of chia oatmeal pudding. She spent the day at the cancer centre in Brandon where she received some of the drugs. The rest of the cocktail was administered at home over the next 2 days from a bottle she wore. For the first few days she felt pretty good – a bit of fatigue and stomach pain, but otherwise pretty strong.
Unfortunately things got progressively worse. She complained about sharp pain in her abdomen where the Whipple procedure was done, increasing fatigue, and a lack of appetite. On June 7, we had an early birthday celebration for Astrid with sushi and cake but mom was too tired to make an appearance. Knowing that she would do to be with her family, this was a clear sign that she wasn’t doing well.
Initially mom said she wasn’t going to start chemo until after we left because she didn’t want to be sick around us. She didn’t like being vulnerable or a burden. A lot of the pain and discomfort my mom suffered through without telling us (I only know from her diary). She was very reluctant to take pain medication and often waited until the pain was unbearable. She worked really hard to get off of opiods from her Whipple surgery because she didn’t want to get addicted, which may seem silly in retrospect.
On June 11, Emily, Astrid, and I left the Ponderosa after 2.5 months. It was hard to say goodbye not knowing what the future held. I was hopeful that things would get better but also worried that I might not see her again.
Immediately after we left, my mom called her doctor and explained her symptoms. She was told to go to emergency. They put her through a battery of tests but couldn’t find any acute problems so they sent her home. My mom was scheduled to start her 2nd round of chemo on June 17 (2 weeks after the first) but they postponed it until they could figure out why she was in so much discomfort from the first one.
The tests showed she had parasites (blastocystis) in her digestive system that weren’t helping. Luckily they’re easily treatable with antibiotics but it did cause a delay in her treatment. I remember talking to my mom and dad at this point and they were feeling rather optimistic. They thought they knew what was causing the stomach problems, my mom joined some Facebook groups with cancer and Whipple survivors which gave her positive stories to focus on, and they had found research showing promising results from chemo treatments.
Two days later a lot of that hope was dashed when MRI results came back and showed spots on my mom’s liver. It looked like the cancer was spreading.
On July 15 Mom talked to her oncologist. At this point there was fluid buildup, spots on her abdomen wall and on her liver. The doctor said it was “concerning it came back so soon”. They came up with a plan to drain the fluid and adjust the chemo dose to something easier to handle.
Chemo 2-4 – July and August 2020
My mom did 3 more rounds of chemo (July 22, August 6, and August 20). She tolerated them better than the first round, either because the parasites were gone or the drug dosages were adjusted. Unfortunately, it didn’t help slow down the cancer.
The main indicator of pancreatic cancer is a protein called CA 19-9. In a healthy person, it is usually between 0 and 34 units/mL. When my mom was first tested in early May it was 107. During chemo it increased from 1354 to 2291. By October it was 4400.
Note: there were two blood tests that gave CA 19-9 readings exactly twice as high as you would expect from the adjacent readings. I’ve included them in the chart as small blue (original) and yellow (corrected) dots.
During this time my mom had genetic testing done to see if she had one of the 50 known gene mutations that cause pancreatic cancer. In some relief to her children, the results all came back negative.
Alternative Treatments – August to October 2020
In addition to doing four rounds of chemotherapy, my mom and dad also sought out alternative therapies and cancer cures. On July 18, my mom saw a Naturopath in Brandon who convinced her to start taking Viscosan and NADH, some moderately expensive herbal remedies with questionable benefits but low risk of side effects.
On August 8, she started taking Rick Simpson Oil (RSO) after my dad found stories from cancer survivors who swore by it. RSO is made from concentrated cannabis oil in homemade batches. Proponents claim RSO is “nature’s answer to cancer” (and a host of other illnesses). Medical research on cannabinoids is mixed. Some show it reducing tumor growth, some it causing cancer spreading faster. All of the information online on how to treat yourself with RSO comes from a small number of people who have experimented on themselves. My dad followed the approach from Rick Simpson who suggested starting with a small dose 3 times and a day and doubling the amount taken every 4 days.
RSO is concentrated marijuana. It makes you high. My mom’s journal has detailed entries up until August 12 and then they just stop. Her memory became foggy, she hallucinated a lot, and she forget about a whole week happening. I’m not sure how much of this was the RSO, the chemotherapy drugs, or her anemia (around this same time she became dehydrated and anemic and needed a blood transfusion).
We visited my mom again in September and the changes were noticeable. At this point she was up to a gram a day of RSO. She spent all day in bed staring at the ceiling, didn’t talk much, and said really weird things. It was frustrating for me because I was there to spend time with her but it was almost impossible to have a conversation.
I don’t know how things would have gone without the RSO. It’s possible it gave her peace and helped her forget a painful daily existence.
For a few days I convinced my dad to pause the RSO, which allowed my mom to have some good conversations with us. She even got out of bed and walked around the garden.
The final alternative medicine my dad tried was Essiac tea. By this point my mom had stopped chemo, but my dad was not willing to give up trying. He insisted she drink the tea everyday and got really upset when she wasn’t able to. I remember telling him, “Dad, it’s not worth the stress. The tea isn’t going to make her better.” And his response was something like, “It’s the only hope I have left.”
In the end, the alternative treatments did nothing to save my mom but they did cost thousands of dollars. Money my parents were happy to spend regardless of the flimsy evidence they could help because they offered a glimmer of hope.
End of Life – October – November 2020
Being the primary caregiver was extremely hard on my father. He wanted to make her better. He needed hope that she could beat this. He did his best to be her nurse – worrying about her fluids, her pain, and energy levels. The rest of us visited for long stretches, but he was with her everyday for the whole 10-month emotional roller coaster.
In my mom’s final months, her health deteriorated a lot. She needed strong pain killers all the time. Her digestive system was messed up and she had frequent bouts of diarrhea and vomiting. She also had anxiety attacks and didn’t sleep well.
Early on my parents had serious conversations about what would happen if my mom died. I’m sure they weren’t easy, but I’m grateful they had them. Before she went in for whipple surgery, they made sure their will was updated. They talked about the Ponderosa and what my dad should do after she died. They were hard conversations but necessary ones. My mom was very clear what would happen when she died. She even went as far as planning the menu for her end of life party.
The one thing my parents didn’t talk about was Medical Assistance in Dying (MAID). I’m not sure my mom would have agreed to it but it would have made things a lot easier. My mom was admitted to the palliative wing of the Minnedosa Health Centre on October 23 – she was vomiting a lot, anxious, and my dad didn’t know how to care for her. Initially, there was some hope that they would stabilize her and send her home, but it quickly became obvious that she would be there until she passed away.
When I talked to them a few days later my parents were coming to terms that this was the end. The doctor had told them that the pain in her abdomen was from a tumor pressing on her liver and she had two weeks left. This probably would have been the last chance to explore MAID options, as she was lucid and it takes 2 weeks to get the process going.
I flew back on November 11 to spend the final days with my mom. This was already 18 days after she checked in and she was still hanging in there. By this point she only spoke in short bursts. I spent most of the time by her bedside, holding her hand and just being with her. It was hard to watch her die. She was ready to go but her body wasn’t quite done. She would put her hand up in the air and say things like: “Help me”, “Push me”, “Do I lead or follow?” and “Is it supposed to feel like I’m going up?” She was clearly ready to die but unable to. She told me it would be “Nice if it was today, don’t want to stay” and “I’m ready to go and I can’t do this anymore.”
For the last 3 weeks my mom always had someone with her in the hospital. We had a rotating schedule of people taking 24 hour shifts and sleeping in the chair next to her bed – with my dad, Auntie Darlene, and myself covering every 3rd day. We had to get special permission to have so many guests with COVID restrictions. When my mom kept hanging in there, one of the nurses suggested that some people prefer to die alone and that maybe what my mom needed was privacy. So on November 21st Kerry, Dad, Sheryl, and I all said our last goodbyes to mom and left her alone for the first time in weeks. Within 30 minutes of Sheryl leaving the hospital, we got word that my mom had passed away. After 8 months of hoping and praying my mom would live, it was weird to feel so much relief that she had finally passed away.
Pancreatic cancer is is not fair in who it targets and we still don’t have effective treatments for it. If you want to make a donation to cancer research in Canada, you can donate to the Canadian Cancer Society or Pancreatic Cancer Canada.