Surviving Pancreatic Cancer

Yes, I am a survivor, but not in the way you think. I have survived while others have not. I have witnessed pain unlike any other. I have watched death come and take twice now — a death that I wish no one would have to experience. I have survived living when both of my parents died at the hands of one of the most silent and aggressive cancers. This is my “orphan” story.

I had an amazing life growing up. I was one of the blessed to have two parents who were so insanely in love with one another. Date nights multiple times a week, romantic gestures that were enough to make anyone envious of the love they shared–they were more than a cliche. I have to share a story if only to make writing this less painful. My mother was working at Kodak at the time of this disgustingly adorable story which she always told like a teenager in love. She was on top of a machine press during the middle of the day and all of a sudden she heard my father’s voice singing “Buy Me a Rose” by Kenny Rogers. She looked up to see him walking through the aisle–escorted by her boss since it was a restricted area after all–holding a rose. She climbed down from the press, and he swept her up and told her he was taking her away for the weekend. He had already approved it with her boss and he had her bags packed in the car. This wasn’t the only gesture like this, either. It is just one of my favorite stories to share. Believe me when I say that it was true fate that brought them together and they were meant to be with each other forever.

That was what my father kept repeating to my mother when he was dying. Forever. And when he couldn’t speak anymore–when the cancer took so much of his strength that all he could do was move his hands enough to hold my mother’s–he traced the infinity symbol into the palm of her hand over and over. Forever. That’s why he fought so hard when he was first diagnosed fifteen years ago (today, to be exact). And why my mother didn’t want to fight at all when she was diagnosed almost four years ago. They were each trying to keep their promise of forever. If there is any silver lining in this story, it is that my parents have their forever now.

Let me start at the beginning of my story. I was 15 years old and was awoken by my mother one night, rolling her eyes because she was taking my father to the hospital for stomach pain. Why the eye roll? Because this was the guy who would scream and hiss and holler because of a finger cramp. His tolerance for minor pains was… well… the typical “man baby” reaction. A cold? Forget it, the world is ending. It was the little thing we laughed about behind his back… innocent laughter at the 6 foot tall, 250 pound big baby whining about a stubbed toe. Both of us thought that this was nothing more than a little stomach ache.

So, when dad ended up coming home after an emergency surgery to place a colostomy bag because of a ruptured bowel, well… we were eating our words. While a ruptured bowel is nothing to joke about, it was something that was fixable, and in some time, he could have it removed, even! So we passed the time making light of the situation at hand, because one thing my family has always taught me is that laughter heals everything. We joked about corn races and when my dad had to “fart” his bag. Life went on as normal as it could with your father having a bag of excrement hanging on his hip. Until it didn’t. Until life stopped.

I remember the day I found out my daddy had cancer. I think he was having surgery to remove the colostomy bag. (This part is fuzzy, you see. There are a lot of details of this part of my life that are blurry. This was my dark time. I was too young to know how to deal with this–my first death and the death of my father, none the less. I blocked out a lot of things, but held onto all of the painful and the melodramatic. It was my melancholy. As I write this now, my best friend is urging me to release my story because it is not healthy to poke at a bruise repeatedly. But that is what I did with this part of my story. I held onto the dark parts and built such a massive bruise so I could poke it. So I could feel pain. So I could remember. It sucks being a teenager.) I was in school and I got a call down to the office. I knew my daddy was having surgery and I was immediately scared. More so when my aunt greeted me and not my mother. She was sad, but not ‘your dad died’ sad. Which scared me even more. It was like a big band-aid being slowly pulled off. She wouldn’t tell me what was happening, but I knew it was going to change our lives.

When I went into the room with my mom and dad, they told me. Dad was dying. Stage 4 Pancreatic Cancer. They found calcification all over his insides — most likely the exposure to fresh air when he had his first surgery spiked the growth. Everything was covered. But they were going to fight. He was going to fight.

If I blink, I can see the pink toned room, the sunset coming into the window, the shadows dancing off of their faces. I can see my family in the hallway. But it’s all covered with a haze. Like I smeared oil on my eyes and stuffed my ears with cotton. I began to block out everything at that point. It was my coping mechanism–one that I would ultimately spend years of therapy in for.

My father having cancer was hard on me. You will probably assume it was because I was young. It was my first time experience death; my grandmother passed when I was too young to remember and my dog died not too long before, but this was the first real tangible death I had to experience. All of that is hard enough on a kid, but it was more than that. You see, I was a daddy’s girl. I always had been. We had so much in common–the same brain, the same talents. He was my hero. Only he could make me laugh like a fool when we were playing or cry heavy tears when he was mad at me. We had a bond that my mother and I just didn’t have, not yet.

Mom and I were at constant war. We were lucky to come into each other’s lives in such a way that we were destined to experience life changes and milestone together. My mom turned 50 the year I turned 21. That also equated to mom going through menopause when I was going through puberty. So we spent the previous few years before my father’s diagnosis hating each other. So much so that there were times when my mom had a bad day at work, or I had a bad day at school, that my dad kept us apart. We were volatile to each other. She told me once–long after we became best friends–that she used to tell my father she couldn’t stand to be near me, and I had the same conversations with daddy about her. We were both just going through bad times at the same time. Truth be told, we always loved each other… we were just two bitches fighting for our sanity at the same time.

When daddy was diagnosed, our lives had calmed a bit, but I still held onto the fact that I loved my father more than her. My daddy and I never fought. If we did, it was because I was being bad and I deserved his anger. He was my protector and he was dying–leaving me with her. All I could think about was why him? Why not her? Privately, I wanted her to die. I wanted her to be the one growing weaker day by day. It should have been her. Funny how cruel the world can be when I look back on those thoughts. Maybe I was punished for thinking that about my mother. Maybe it was just fate. Maybe it was something greater than all of us…

I was fifteen going on sixteen during my father’s treatment. Life became a dark series of coping–hiding my emotions, avoiding the truths, and pretending that if I shut the world out, there wouldn’t be pain. I don’t have many memories of my father’s treatments because I shut down. All I have from that time is guilt. A lot of guilt that I have worked through, some that resurfaces when I remember things, and some that I will never let go of.

What I do remember is my father living life until he physically couldn’t. We played tennis once… not much before he was too sick to walk anymore. It was amazing. I also remember my mother trying to live life. She lived as if he weren’t going anywhere. As if they weren’t spending weeks at chemotherapy, as if his hair wasn’t falling out, his skin getting frail, his body wasting away. She lived for every moment with him. And yet, somehow, they both found the time to try and get me to live. They were open with me about what was going on throughout that whole year–when treatments weren’t working, when daddy was going to be leaving work, when he was coming home to die. They tried to include me in everything.

I didn’t want to live that life though. I wanted it all to go away. I didn’t want to live talking openly about treatments and goodbyes. When I say I avoided it all… I mean I avoided it all. Every moment. Every bad moment and every good moment. I lived in a world of hurt, and why, and what if. My daddy wasn’t going to be here for my graduation, my wedding day, my babies. I lived in the sadness. Because of this, I created more sadness in the end.

My father died peacefully at home. He chose to stop his treatments when they weren’t working and when he felt himself growing weaker, he chose to stop his feedings. It was an ending on his terms and it was beautiful in that he was able to say his goodbyes to everyone he cared for. My older siblings came home and each had their own special moments with him. My aunts and uncle shared fond memories with him–thanking him for caring so deeply for their baby sister. Neighbors, friends, co-workers. He wrapped up doors with everyone.

Everyone except me. I wasn’t ready. I wasn’t able to have that moment. The man lying in a hospital bed in our living room–the very room I write this in now–was the thing I feared the most. That wasn’t my father. And my stupid, selfish, teenage self avoided the one chance I had to say goodbye. I never got my moment in the end. That is my one true regret. I know he doesn’t blame me, I know my mother never blamed me. It was how I had to work through it. But oh does it hurt. It is the source of all of my pain and guilt. But, I think it taught me a lesson. It taught me that at that time, that is what I needed to survive. And it taught me not to make the same mistake again.

The night my father died is clear in my mind. Maybe it’s because it is the darkest moment in my life, or maybe it is because it is the lightest. Fate has a funny way of working, doesn’t it? The night my father died, my life did change. For the worse and for the better. You see, the pain of knowing I was losing my father was actually greater than losing him in the end. Because in the end, he was at peace and we could heal.

My mother and I had left him for just a few hours in the care of my family–a small reprieve from the madness if only so we could get out of the house and breath a little. We grabbed a bite to eat at a local diner and in the time it took us to eat our meal, we were getting a call telling us to come home. It was time. I closed myself off in my room as mom and dad held hands until his heart couldn’t hang on any longer and that was it. My closest friends came to see me and I wanted no one. It was over.

And it was just beginning.

My father’s greatest gift to us was that in his passing, he brought my mother and I closer together. I needed her as much as she needed me because without each other we had no one. The loss of my father created something so beautiful. It created the best friendship I could have ever asked for. I thank him every day for his sacrifice because without it, I don’t think I would have ever had the relationship with my mother that I had.

When it was just us, we were no longer mother and daughter. We were Judz and Linds. We were the dynamic duo. We did EVERYTHING together. And our bond only grew as we did. Sixteen to twenty-nine, thirteen glorious years with my mommah. The memories are too many to put in one story. I could write a book about our adventures. Inside jokes that only made sense to us: Black Friday adventures, camping trips, sticking a dime between the bumper of that guy’s van…, Harry Pottah, Momma Does Venice, Grandma’s Gettin’ Gold, boo(ts), Dicky the Reindeer, squatch hunting and so much more. In college, after I combated the first semester homesick, she would come and visit every weekend just to hang out. Football Sundays and shopping trips. I lived for our memories together. And they never stopped. Even when I was married, and living on my own, she still was the first person I chose to hang out with. Every milestone she knew about, every moment she was there for. She was all the best parts of a mother and a friend wrapped into one amazing package. Judz, this part is just for you. You were my EVERYTHING, hot mommah.

She always said how proud of me she was for being so strong during my father’s death, but I wasn’t strong… I was just coping. She was the strong one. She always had been. She was strong emotionally and physically. Pain affected her differently than it did others. She brushed it off. There wasn’t time for pain when you could be LIVING. I think my father passing intensified that. For fuck’s sake, the woman almost died once–actually, I’m pretty sure she did die and was revived. (This is a story in and of itself, but she ended up getting the flesh eating bacteria in Barbados where she traveled alone while I was in college. 6 weeks in essentially a third-world hospital. Pigeons shitting on her bed during debridement treatments until she was stable enough to travel home for over a year of treatments and reconstructive surgeries… but that story is too crazy and deserves its own time). But her strength pulled her through. We almost lost her then, but it wasn’t her time. She had more living to do.

So, in the summer of 2014 when she began having some strange pains, she brushed it off. She had living to do. We spent the summer camping, and having football Sunday’s (which she paid for dearly in pain after… but never let on how much). And then at the end of the summer we went on a wine tour. Oh, she was so sick, but she barely let on. She stopped drinking probably half way through to save herself from the pain, but her smile never stopped. It was easy to ignore how sick she really was, but I think she knew something serious was taking over.

In October, she finally couldn’t take the pain anymore and she called me from the city to take her to the hospital. As my husband drove us, we let Dr. Google diagnose her symptoms. Pain in the left side after consuming. Pain with pressure that radiated to the back. Classic symptoms of pancreatitis. Yet, we didn’t speak about it. We glossed over it. It could be her spleen! Maybe she has a broken rib some how! No, but deep down we knew. We all knew.

And when the doctors confirmed an “acute case of pancreatitis” we breathed an outward sigh of relief while we all began screaming on the inside. Somehow we all knew, but no one said it. What we all feared, what she probably feared for months and never spoke a word of to anyone. This wasn’t just an acute case of pancreatitis.

And it wasn’t. Though, her diagnoses wouldn’t come until a few months later. Nine admissions into the hospital later. Being taken off of solid foods later. You see, her cancer was a secret. It didn’t want to reveal itself quite yet. I like to think it was the universe’s sick way of giving us hope. Maybe this really is pancreatitis, though chronic in its nature now. There were no tumors on any of the scans. How could it be cancer? Well, her particular cancer hid behind her diseased pancreas. Only to be discovered during our last hope. Her hope to eat again, to live her life. She was having surgery to remove her pancreas. She could live without it. She didn’t need it.

This was March of 2015. She was having the Whipple surgery. Our whole family was there, and my best friends, waiting for her to come out. We had hope. We were strong. She was strong. But when we were called to see the doctor, we knew something was wrong. It wasn’t long enough, or it was too long… that part I don’t remember. I do remember her surgeon coming in. Before she could speak, we knew. Actually, we thought she had died on the table. Maybe that would have been a relief? Maybe not. That’s not how it came to be. She had pancreatic cancer.

The tumor had fused her pancreas to her liver and there was no getting that nasty, diseased thing out of her. Stage 4. That’s how it’s almost always discovered, by the way. Stage 4… the stage at the end. Cancer sucks, but Pancreatic Cancer sucks even more. Fuck cancer.

Seeing my mother after she came out of surgery was strange. There was a strange moment where she connected eyes with me and I with her and we both knew. We both knew she wasn’t going to fight it. She watched my father suffer through treatments, and she wasn’t going to put her body through that. For what, a few extra weeks? A few extra months? No… she was going to LIVE. She didn’t have to convince me. Her decision made sense to me. She wanted to live her life on her terms and end it on her terms.

You see, I had years to prepare for this moment. Years to live with the guilt of how I dealt with my father’s death. Years to know that I would never make that mistake again. I would be there for my mom, as I was months before through every hospital admission, every step forward and every step back. We’d go through this together as we did everything in life until the very end. Whatever she wanted in her last months of life, she would get.

And it was beautiful for awhile. I moved home with her to take care of her. She tried to tell me she was going to die in hospice and I damn near lost my mind. She didn’t want me to live with the memory of both of my parents dying in the house I would ultimately inherit. She was insane if she thought I was going to let her die alone. So, I left my husband and (most of) my fur babies for 4 painfully difficult and sadly beautiful months. I did bring my Moose Cat with me because… well… I couldn’t live without him.

We had a living wake for mom. Her request. She invited everyone who touched her life to spend an afternoon with her eating food and laughing and joking and drinking and sharing memories. We went camping. We got high together. We shared amazing memories and we didn’t talk about what was to come. Except, I was ready to talk aboutit, but she wasn’t. She was holding on for something. Fighting to the literal death. And this is where my father and mother’s stories take a drastic turn.

My father’s passing was peaceful. Treatments kept him comfortable, he had the time for closure and he went peacefully. He stopped eating, he stopped talking, and he fell asleep. Mom on the other hand, spitfire as she was in her prime, went out fighting. We used morphine to keep her pain at bay, and she was able to “pleasure eat”–it gave her no nutrients but damn it tasted good. She lived as best she could while fighting death her own way. While she avoided treatments, she held on for dear life. I don’t know why. I don’t think she was afraid of dying, but afraid of what she was leaving behind. Hurting those she loved. Her mind began to go. Vision blurred, memory getting a bit foggy. She started to forget things like where she was or what was happening. She was a fraction of her former self at the end.

It’s funny. Avoiding his last days was the worst memory I have of my father’s death. And being there for her last days was the worst memory of my mother’s death. Karma came back to punish me for wishing death upon her when it was my father’s turn, because I found myself repeating that phrase again. This time, to save her. Or maybe it was selfish… to save me. Sleepless nights of hitting a morphine button while she writhed in pain. Hours spent wrangling her and keeping her safe as her mind grew weak and made her lash out, forget where she was, and try to leave the house without clothes on. I saw my mother dying in front of me in such a tragic and difficult way. When I would get her to finally sleep in that last week, I prayed. To who, I don’t know. I don’t believe in God as many do, but I prayed none the less… maybe hoping she was secretly listening. I told her to go. Find the light. Find my dad. Be free. We were okay. I didn’t want her to suffer… and selfishly, I didn’t want to suffer.

That is the guilt I have with my mother’s death. I just wanted her to die. Because watching her fight to live was the most painful thing I have ever witnessed. It tears me apart to remember her like that in her last moments. And it tears me apart to know that I wished death upon her, knowing full well it as partially for my own sanity. How terrible a child to do that.

But that is the point of this whole, long story. A story that is uniquely mine, yet breathes moments of similarity into everyone’s story with Pancreatic Cancer… cancer in general… death in general. There is never a right way to handle something so deeply tragic as death. There is only your way. We all do what we have to do to survive. My father, he went through treatments. He fought to survive for us. For his family. At first, to see if he could beat cancer. And when that didn’t work, then to survive long enough to give us financial and emotional closure. Mom, she survived by going out on her own terms. She wasn’t going to let anyone, or anything, dictate her time on this Earth. She was going to go out when she wanted, how she wanted.

And me? I survived the only way I knew how to. I coped the only way I could each time. And I survived. I have scars, but I survived. In the end, no matter how much guilt I have, no one can blame me for what I did to survive, because the alternative would just bring this pain on someone else.

The last night my mother was alive was horrid. She was restless. I had spent the week checking of the “signs of death” that every hospice pamphlet and cancer forum taught me to look for. Deep down, I knew we didn’t have long with her. It was close to two in the morning and mom was unable to sleep. She began wandering the house and I sleepily followed because I knew it wasn’t safe to let her be alone. All I wanted her to do was rest. She needed to rest, but she kept wanting to go outside. “I want to go,” she would say. In my frustration, I kept asking her where. I didn’t know what she wanted, but now I do. She wanted to go…

I finally got her into her room, and she proceeded to strip all her clothes off. She was hot. I told her she had to put her nightgown on or else she would be cold and she fought me like a toddler and threw herself on the floor. I finally dressed her, but she wouldn’t get back up so I just looked at her and said, “Mom… this is going to hurt,” and I lifted her and put her into bed. She stared at me, almost laughter in her eyes, as I sat down and said, “Ok… let’s try to sleep.” I swear to you, the next moment–as dark and sad and strange as it may be–is the moment I hold dearest of my mom’s passing. As she settled into bed, she looked at me and lifted her hand, and gave me the finger before laying down and falling asleep. I cried. I laughed. I laughed while I cried. Because I knew that was it. That was my mother’s last conscious moment with me and if any of you knew us, you would know it had to be like that. That moment between her and I was nothing more than two best friends giving each other hell.

She didn’t wake up the next morning. She was still with us, but behind the haze of the other side. Our family came, we hovered around her bed, held her hands. I wiped her tears from her eyes. And we waited. We waited until her breath became shallow. We waited until her breath almost stopped. And yet, she still hung on. We grabbed her dog, Pebbles and placed her on the bed with mom. That was the peace she needed. She passed within seconds. And over the course of weeks, months, years… I survive. We all survived.

Survivors are strong. They have fought the battle and won. It doesn’t matter how messy the fight was or how much pain they endured. Their battle is over and they have won. They get to live again. Continue life as it was meant to be, having grown stronger from their battle. I am stronger for what I went through. I have learned lessons in healing, in mourning, in dying, but most of all, I have learned how to live. I have learned not to take life for granted. Not to dwell on the darkness and to embrace what life gives to you. Because even if life gives you death… there are lessons to learn from it, and beauty within.

For mom and dad, death was a blessing in the end. In death there is no pain. There is only freedom. In their death, they are with each other again, and with that thought I can be at peace. I survive knowing that in the end, they have found their forever.

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