It’s been over three years since my mom passed away from pancreatic cancer. I don’t know if people fully understand what I went through and how painful it was for me to watch my mom struggle with this disease when I was only 20 years old. Also, this experience is really what inspired me to start this blog. So I want to share my story as I remember it at this point in time, over three years out.
I’ll start out with some background information. Pancreatic cancer is the deadliest form of the more common cancers. I never would have suspected that before my mom was diagnosed. As I learned in one of my public health classes, it’s the fourth deadliest type of cancer in the US, but it doesn’t even make the top 10 list for most common types of cancers. In other words, it is not the most fatal due to its commonality (like lung cancer), but due to its extremely low rate of survival.
When I found out my mom was diagnosed with pancreatic cancer, I googled it, exactly what the doctors told my family not to do. The 5-year survival rate was less than 5%. This is due to two main factors: 1. Usually it goes undiagnosed due to its lack of/vague symptoms until it’s too late, and 2. The pancreas is intimately connected to and enmeshed with other organs and tissues in the body, and is therefore extremely difficult to access surgically without damaging other necessary parts of the body.
So from the start, things were extremely grim. My father tried to keep everyone, especially my mother, in high spirits, clinging to the very few stories of survival that were available online. He contacted the leading physician in the US, located in New York, who treated Steve Jobs when he had pancreatic cancer. It turned out another physician in San Diego was using the NY physician’s pancreatic cancer regimen, so my mom was able to see that doctor for her treatment.
I clearly remember the day my mom was diagnosed. My dad told my sisters and I to all gather in the living room. We were all sitting on separate couches because it was an oddly large living room with different pieces of furniture scattered about. My dad told us he had some bad news. That Mommy had been diagnosed with pancreatic cancer. Through tears, his voice grew higher and higher as he told us that we were going to fight it. He seemed so determined. I remember my sister Mallory hysterically crying and screaming, as she ran into her room. It was a very primal sound that I’d never heard before, like a wounded animal. My sister Rebecca was in quieter tears. I didn’t cry. I was in shock. I just couldn’t comprehend the reality of the situation. I also remember wanting to maintain some sort of emotional “strength,” to comfort my sisters. I didn’t feel any sense of hope at all like the rest of my family members seemed to maintain throughout the experience. I just felt really disconnected from it all.
Since the day my mom received her diagnosis, in late May 2013, it was like she was already gone. My sister Rebecca was about to graduate from high school when my mom was diagnosed, and my dad, fearing my mom’s immune system was too weak, as she had already started chemo, thought it was best that my mom didn’t go to the graduation ceremony. My mom was so devastated. But she agreed that it was probably best she stayed home. That was the day that I think I started to grow up. My mom didn’t want to be at home alone and wanted someone to stay with her. A truly independent person, I’d never heard my mom express such sentiments. I decided to stay with her. I was really upset about it on the inside, because I wanted to go to the graduation. At the time I regretted saying that I’d stay, but my mom seemed so happy that I couldn’t take it back. I sulked a bit while helping her decorate the house for the party we would have when my sister got back.
Before undergoing my mother’s cancer, I would hear such positive, feel-good stories in the media about cancer patients and survivors. There were all the typical tropes, the cancer patient who was a warrior and nipped her cancer in the bud, the cancer patient who prayed and practiced positive thinking and his cancer miraculously went away, and of course, how innocent and pure cancer patients all are. My mom was none of those types of cancer patient. In fact, she hated it when people started to see her that way. As some innocent helpless little being that needed all of us to lift her up with our magical thoughts and prayers. She actually didn’t want anyone to know she had cancer because she didn’t want anyone’s pity. She prided herself on being fiercely independent, almost to a fault. But that’s just who she was.
Now that I’ve experienced the hell that is watching your favorite person in the world die the excruciating death that is pancreatic cancer, I’ve learned how fucked up many of our ideas are about grief, loss, terminal illness, and death. They really need not be romanticized, because by romanticizing them, we are actually distancing ourselves from the reality of the situation. By putting our own ideas on what death or sickness should be like, we aren’t allowing ourselves to truly be present for the process. My mom just wanted to do it her own way. She wanted to be independent until the end. It was really hard for her to have people help her. I’m not saying that was what was best for her or our family, but that’s how she lived and it served her the best way she knew.
Here and there her spirits would rise. Like after some of her more successful chemo rounds where the doctors announced her “tumor markers” were going down, meaning that the tumor was shrinking. She even went to Arizona in the late fall to visit her own mother in Arizona, my grandmother, who was ailing from Alzheimer’s disease. She had a great time on that trip, and she told my dad she even felt like she was cancer free at that point. However, by the time January rolled around, things started to go downhill fast.
Towards the end, her mind went. There’s a phenomenon called “chemo brain,” which basically means that you are mentally a lot slower and more forgetful as a side effect of chemotherapy. In addition, my mom was in a lot of physical pain due to the pancreatic cancer, and was on pain medication. It’s an extremely painful cancer due to inflammation that arises from the cancer itself, and the pain of the tumor pressing against the lower back. She couldn’t get out of bed much, especially after her chemo treatments. She became extremely depressed. I had never before seen her in bed for very long–she typically rose early in the morning and kept on going until she went to bed at night. It was a total mindfuck to see her so sick and in bed. It was the complete opposite of everything I’d grown up with. I went from having a super mom, to having a mom who was super into watching old black & white TV shows for 12 hours out of the day.
She couldn’t eat much due to the nausea from the chemo, the change in how things tasted caused by the chemo, and also the fact that the tumor was pressing against her stomach, making her feel full even though she wasn’t. One of my most bittersweet memories during her illness was when I made dinner for the family one night, and she took a few bites, proclaiming it was really good but apologizing that she couldn’t eat much. I could tell she was proud of me though, which is such a fond memory to look back on as a daughter. No matter how sick she was, she still took a few bites just to show that she loved me.
It was a sad state of affairs. If one thing seemed to get better, another worsened. It was like her body just wanted to self-destruct, hijacking any efforts to try and make it better. Eventually she developed a condition called ascites, where fluid would build up in her stomach/abdominal area that she had to get drained every 3 or so days. It made her feel extremely uncomfortable, and she looked about 8 months pregnant. Add that to her skeletal frail cancer body, and you get a very sad being that just doesn’t even look human anymore. It was really scary to see her that way, for my family, myself, and especially for her.
It was at this point that she was too weak for chemo, so radiation became her main course of treatment. I accompanied her to a few of her radiation appointments. She had to undress in a dressing room and put on a hospital gown before each session. At that point, she had been on so much medication, had been eating so little, and was so confused and out of it, that I had to help her get dressed because she couldn’t figure out how to do it. I remember walking out of one of her sessions and she kept getting distracted. She needed help walking and remembering how to get back to the car. She was the color of a ghost. She reminded me of the Alzheimer’s patients I had volunteered with once at a retirement home. But it was my mom. The woman who I could once tell anything to, no matter how difficult, no matter how emotional, no matter how many problems I had, she was always there for me. And now in a matter of months, I could no longer talk to her about much of anything, let alone my problems. Because to be frank, she was my problem. It was a problem because her illness was causing me so much distress. I wanted to talk to her about it, about HER, but she was too sad to talk about it, and no longer capable of holding my burdens. It was an emotional catch-22.
I wish we had more open communication to talk about what was happening, but that’s not how she wanted it, and I didn’t really know where to begin. I did bring it up one time, in the earlier days of her sickness, how sad I was that she was so sick. And how I felt that I needed to talk to her about it. We ended up crying and she told me she just didn’t want to talk about it because it made her too sad to think that she was going to die and my youngest sister, Sarah, who was 13 at the time, wouldn’t have a mom. Looking back I’m really glad I had that conversation with her. It was heartbreaking, but I got to weep with her and hug her and feel close to her for probably one of the only times I was able to during the course of her illness.
The last two weeks of her life were an extremely stressful blur. My memory doesn’t serve me well during that time, but I do have some memories of needing to help my mom use the bathroom, giving her some sort of syringe injection because my dad was too afraid to mess it up, watching her in her hospital bed surrounded by family members, feeling so far away from her and from everything I ever knew. Hearing her voice slowly waste into nothing. Watching her body slowly waste into nothing. Watching her bed become converted into a hospice bed. Watching hospice hook her up onto an IV of morphine. Watching her lie there, shallow breathing, as we played the sound of ocean waves on YouTube, a search that I would see later that month that would haunt me. Telling her I loved her but not knowing what else to say. Not sure she could even hear me anymore. People tell me “they can hear you at that stage,” but how can we really know. Leaving her room to take a nap. Being awoken by my dad’s friend, telling me my mom had passed. Still in shock, still unable to cry more than a few bursts at a time. Feeling emotionally drained yet constipated. Watching my 13-year-old sister Sarah close my mom’s eyes because as she said, “Otherwise her eyes will just always be open.” Taking my earrings she loved out of her now cold ear lobes. Kissing her goodbye. Being told to leave when the bodybag came to take her away. Going back into my room and not feeling any different…
It’s been over four years since that original diagnosis, and over three since she passed, but somehow it still feels like it just happened recently. Time really changed when you lose someone you loved so deeply. As the cliche goes, words can’t quite express what happened–but all I can hope is that this post gives some insight into what my family and I went through.