My Story of Loss to Pancreatic Cancer
My mom recently died a terrible, somewhat sudden death. I say recent…21 months is still recent in my book. The culprit? Pancreatic Cancer – “the silent killer” as they call it. I rarely write about things non-travel and culture related here, but if you consider that my mother’s death was an impetus to my starting this blog, it’s not completely off topic.
I recently wrote the following article for Linda’s Hope, a non-profit dedicated to fighting pancreatic cancer via fundraising, research, and awareness. It was first published here.
This is my story- my experience with the evil known as pancreatic cancer. It’s a tale of loss, the beginning of the deepest despair, that does hardly any justice to this phenomenal woman who was taken- way too early- from my family of seven.
I was in my kitchen in Washington, DC when I got the call from my mom. It was an early April evening in 2011. I remember the moment so vividly, like a flash-imprint on my brain. She didn’t come right out with what she called to tell me. Like she so often did, she seemed to be setting some sort of context.
“Hey Linds. How are you?” “
I’m OK. Tired. Crazy day at work.”
“Oh, well how’s Alan?”
The small talk ensued for a few minutes. In retrospect, she seemed to be having trouble saying what she wanted to say.
“Well, I just wanted to call you and let you know that I’ve been having some tests done.”
Wait, what? Tests? What kind of tests? What was she talking about?
“My doctor thought it was a diverticulitis flare up, but I could tell that it was something else.”
I was with Mom when she was first diagnosed with diverticulosis and diverticulitis, which I later discovered is fairly common in older people (half of those over 60 will have diverticulosis). I brought her to the emergency room and waited with her as she balled up in agony.
So her intuition led her to seek out a second and third opinion. The doctor, “the jerk” she said, had his nurse contact Mom over a month later to tell her that something was indeed wrong with her.
“I have a spot on my pancreas,” she finally admitted to me. OK. What does that mean?
“I didn’t want to say anything to anyone until it was confirmed. I went to MD Anderson, and it turns out that I have pancreatic cancer.” I grabbed the kitchen sink as I almost fell to my knees.
My ever-optimistic mom continued, “But the good news is that we caught it very early. It hasn’t spread outside the pancreas. And it’s located in the tail, which is the best spot for it to be. I’m already scheduled to have surgery at MD Anderson, which is a leading cancer institution. Dad and I have a trip planned to Europe, but the doctor said it wasn’t a big deal to push the surgery back a couple of weeks for when we get back. I’m scheduled for surgery in May ”
My head spinning, I walked outside onto my tiny back patio. I braced myself on the table, sitting down. “Mom. What does this mean? Are you going to be OK?”
“Yes honey. It’s going to be fine. The doctors are really optimistic, and so am I.” I didn’t know anything about pancreatic cancer, but the word cancer itself was bad, I knew that. I knew that it wouldn’t be a “let’s cut this sucker out of you- ok, we’re done!” situation. I’m a realist and thought, crap- she’s going to have to do chemo and radiation. It will probably come back. Cancer always does….. Is this the beginning of the end?
If you know me, you know that I am a worrier. I always seem to stress over everything and try to prepare myself for the worst. Juxtaposed to my mother, who had sunshine and rainbows coming out of her- well, you know the expression.
Mom continued to reassure me. She said she was relieved to tell us (her kids). She had been living with the knowledge, unconfirmed and unable to tell anyone, for over a month.
After we hung up, I jumped on the Internet, against Mom’s wishes. “Don’t go get on the Internet and start researching this, because it’s all doom and gloom, and I’m not going to look at it that way…”
Yea, this pancreatic cancer business? It was bad. The statistics made me gag. The five-year survival rate- FIVE YEARS- was 4%. Holy crap. The one-year survival rate was 20%- not great at all.
I called my sister, Whitney, who had just lost her best friend to Adenocarcinoma. She was doing the same thing I was, hunched over her laptop, researching the statistics. We were getting worked up, crying, trying to understand what we were dealing with.
I called Mom back in hysterics. No, no, no- her case was different, she tried to tell me. Those people, they normally don’t even know they have the disease until Stage IV. They call it the “silent killer” for a reason. There are usually little to no symptoms, so it’s nearly impossible to detect until it’s too late. So that’s why the statistics were so grim, she reassured me. It was a fluke that Mom’s existing diverticulosis led her to probe further into her symptoms, and they happened to catch the tumor so early.
Part of me simply wanted to believe what she was saying. So in a way, I did. I stopped listening to nay-sayers and did minimal research. In the back of my mind, the sickness was always there, looming.
A+ in surgery
Mom passed her surgery at MDA with flying colors. It went beautifully, the doctors elated. The surgery, scheduled for three to four hours, took less than two. Good signs all around. We all felt hopeful. My dad even exclaimed, “We beat it!” I knew better and told him that we were just starting this battle. He got angry with my pessimism. I was just worried. So, so worried. As it turns out, I was right to be.
Mom kept her cheerful disposition throughout her chemo treatments. She started a Caring Bridge site, touting herself as a “Pan-Can survivor!” Her upbeat updates were encouraging, showing her strength and beautiful outlook on life. She would never be a victim. She was a fighter, and everyone knew it. Her warm positivity was infectious.
“If anyone can beat this, it’s Pegasus,” friends kept telling me. (Pegasus was one of Mom’s many nicknames). I knew that. I held on to that. I toyed with the idea of quitting my job and moving back to Baton Rouge, LA to spend time with Mom. I didn’t want to have any regrets. She didn’t want that for me, though. She wanted me to live my life.
When she started radiation in conjunction with chemo, her mood started to fall. She struggled with the treatments. I went with her to one such treatment. She was cheery and upbeat during the session, talking to everyone who worked in the place (everyone loved her), showing me how she could pick her favorite music channel and jam out while being irradiated. The doctors and techs showed me the contour lines representing different radiation strengths around her organs on the monitor. She tolerated it gracefully, but I know she hated it. Later, Mom admitted that she would not have done radiation had she known how terrible it would make her feel.
Fast-forward to November of 2011. I came home to Baton Rouge the weekend before Thanksgiving for my sister-in-law’s wedding. Mom told me days before that she had been having digestive complications, most likely related to the radiation treatments. She wasn’t able to keep anything down, and the doctors thought that she could have an intestinal obstruction from scar tissue caused by the radiation. Apparently this was not uncommon. There was no way to tell with scans. They thought that the obstruction might correct itself over time. Meanwhile, Mom had to visit a clinic every day to get intravenous nutrients. I brought her to one of these appointments.
Her pain steadily increased and her abdomen swelled. She was avoiding the hospital like the plague. I secretly think she was terrified of hearing bad news. She was admitted to the hospital the night before the wedding. The doctors still wanted to watch her and see if this obstruction would somehow work itself out. It was maddening. When she made no improvements, her surgeon decided that surgery was their only option. He assured all of us that it was a fairly routine procedure; he would cut out the obstruction, and Mom should be fine. She went in to surgery Wednesday, the night before Thanksgiving. That is the night my life changed in the most horrific way imaginable
I had spent most of my days and nights at the hospital with Mom since she had been admitted. I decided to step out for a couple of hours to have dinner with a friend who drove in from New Orleans to see me. In retrospect, I’m not sure why I left the hospital as Mom was going in to surgery. It was supposed to last several hours, so I guess I rationalized that I would be back before she was out of surgery.
So when I got a phone call and text from my dad saying, “Please come back to the hospital right now,” my heart sank. I couldn’t stop shaking during the drive back to Our Lady of the Lake Medical Center. I hastily made my way to Mom’s room, and Dad and my brother, Cullen, intercepted me in the hallway. I could tell by their faces- it was bad. I don’t remember who spoke. It’s all a blur to me now. One of them said that when the surgeon opened Mom up, her cancer had spread. That’s why she couldn’t digest anything. The tumors were wrapped around all of the organs in her abdomen “like liquid cobblestones”. It was inoperable. She might have two weeks.
At those words, I slumped to the floor, body racked with sobs, yelling “No! No! No! No!” over and over. Cullen caught me on the way down, and we stood there in a three-way-embrace: me, Cullen and Dad.
There aren’t words to articulate the pain and depth of despair one feels when discovering someone they love most in the world is going to soon die. I think it would be worse than hearing the prediction of my own death
We went in to the waiting room, where my sister Chandler was sitting. She was there with Dad when the doctor came in with the unthinkable news. I’d never seen Chandler, my controlled and composed sibling, so unhinged, so devastated. She was almost hyperventilating with sobs.
When they brought Mom back to her hospital room, we weren’t sure if she knew, yet. She had been anesthetized and was waking up. We were trying to figure out how and when to have this conversation. I think the surgeon somehow must have told her, because when Dad said something, she started weakly sobbing, simply saying, “I can’t. I can’t do this right now…”
Never give up
What do you say? What do you do? Someone is not yet dead, but it is hopeless, so you succumb to watching them die? No. This is not what we do. Mom’s a fighter. I’m a fighter. Over my dead body was she going to die!
Every day I bombarded her oncologist, surgeon, and radiologist with questions. I got on the phone with MD Anderson, demanding second opinions and experimental treatments. What about the cyber knife? What about x or z treatment? Her oncologist (who also happened to be a family friend) had a couple of ideas for different chemo mixes he wanted to try on her, but he couldn’t do anything until she healed from surgery. So we would wait a week or two.
There was no giving up. You can’t! It seemed like her oncologist didn’t want to, either. They didn’t even order hospice for her when she checked out of the hospital to return to our home. They ordered home health instead, where nurses would come every day to administer her meds.
Somehow none of us wanted to face the facts. She was on morphine, for goodness sakes. But we were still holding on to some sliver of hope.
Reality is a bitch
After a few days at home, Mom passed away in our presence- on December 4th, just three days shy of her 59th birthday. I won’t go in to the harrowing, awful, traumatic details of our trying to resuscitate her after she collapsed. I will say that, in retrospect, it’s a bit of a miracle that we were all seven together, in the same room. All five of her children and her husband were with her in her final moment.
In some ways, I wish I had known overtly that pancreatic cancer was a “death sentence.” That’s what everyone called it, but I didn’t want to believe it. Mom wouldn’t let us believe it. I guess in that sense, we honored her spirit; by fighting, forcing positivity, and never giving up.
I would trade anything in the world to have Mom back. Now, I am determined to see the end of pancreatic cancer- in my lifetime. Why does it have to be a death sentence? Why can’t we find a cure?
Mom was a huge supporter of The Pancreatic Cancer Action Network during her illness. We’ve made it an annual family event to run the Purple Stride all together in Austin, Texas. When I found out about Linda’s Hope and the wonderful things the organization was doing for pancreatic cancer research, I knew I had to be a part of it. I know Mom would be so proud, and if she were here, she would be leading the fight!