The Biggest Demon

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For years now, with anxiety and depression by my side, I have been fighting for my life, laying in bed or sitting on the couch; hiding from the world.

From August 3, to today, with cancer by my mother’s side, she is fighting for her life while being infused with the most aggressive chemotherapy treatment for pancreatic cancer. A fight that left her exhausted, weak, and vulnerable; yet, I could always sense the strength that would emanate from her whole being.

This was the biggest demon that one could ever experience; it is something that will stare you right in the face and mock us all. Her strength gave me strength. But only when I was with her.

Once we saw the surgeon, the chemo was scheduled. This was it. It was going to be what will be remembered as the start of peeling away the mask to reveal its true face; the truth of what was trying to hide and hurt us all.

And the truth shall set you free.

Except not in this case…

She was scheduled for four rounds of chemo. Each treatment would last five hours and were on Wednesdays. Each time I went with her, and each time, I felt like everything was going to be okay. Sitting with her; just “being” with her I felt like I in control somehow. Once home, a nurse would come over and hook a “chemo ball” to her port, and she would have chemo until Friday around 2pm.

Those days, while she was home, were the days where anxiety would come to comfort me. It would keep me awake all night, mind racing, fear, pain, and then finally, running out of my home to drive around until the early morning.  I’d wake up in sheer panic and I would need to flee. Fight or flight. My automatic response was always: flight.

When she was resting at home with my stepfather, and I couldn’t be next to her, my control diminished. I knew she had to rest as much as possible, and I would wait, but I lived and breathed her cancer each and every single day I had to wait. I have, however, made a vow to myself to never show any signs of weakness around her.

The amount of time that it took to recover from the chemo treatment extended with each one.

I was losing my mind.

“God has a reason for this, you have to have faith”

Anxiety and Panic laugh…faith cannot be controlled. Somehow chaos seems to feel more controllable. Somehow.

Somehow, going from waking up in the middle of the night in a state of panic to driving around from 2 am -7 am relieved me from my reality.

Somehow, staying awake and not going to sleep, relieved me from my reality.

Somehow, I am comfortable only when I’m uncomfortable.

And when I could talk to her and she is feeling good,  I am comfortable in my reality.

The fourth and last chemo treatment was October 4-my mom and stepfather 26th wedding anniversary. It was also at that time, that my mom had blood work to determine if she had a cancer gene.

Her father (my grandfather) had 3 brothers, and 4 sisters. Upon discovering that two of his brother’s had intestinal cancer, one brother had pancreatic cancer, and one sister had breast cancer, and my mother’s first cousin also had pancreatic cancer, all who passed away around the same age as my mother, it was determined it would be a good idea to go ahead with the test. The doctor explained that if she had it, that meant that it gave my sister and I a 50% chance in getting it, but we could have access to preventative care. The insurance company just approved it last week, and we were told that it could take 2-3 weeks to get the results. My sister doesn’t want to know. In fact, part of me doesn’t either.

Also, at her fourth chemo treatment, we were told that her cancer marker (CA-19) went from 53 to 19, which was a good sign, but just one factor.

October 27, was her CT scan. The doctor said the CT scan showed that the cancer did not spread and the tumor went from 2.9 cm to 2.4 cm. He would go ahead with the Whipple procedure.

It is scheduled for Nov. 28. He informed us that if, at the beginning of the surgery, if he found that the cancer did actually spread, he would forego the surgery, but that’s only a 9% chance of that being the case.

That means she’ll have more time to recover from chemo until the surgery date.

These past couple weeks, since she has a break from chemo, I️ don’t feel so out of control because it’s just like it was before the diagnosis.

The surgeon did say that she might have to have chemo, however, a less aggressive form, about 4-6 weeks post surgery. That is not what my mom or any of us wanted to hear, but her response as it always has been throughout this was, “Well, I got to do what I got to do” followed with “I guess”. Revealing, again, her strength, but with a small fragmented piece of the mental and emotional pain that this has brought upon her.

She made me feel better when she said those words. It was like a filtered bedtime story to help me drift off to sleep with a pleasant dream.

She will beat this.

She will.

She will prevail. We all will.

How One Word Can Change Everything In Your World

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Cancer. I’ve read the word. I’ve heard the stories. In fact, my father died of liver cancer August 14, 2005, heck, I’ve even diagnosed myself a few times during my late night Google searches. But I never thought I’d have to actually ever experience the pain that, that word has caused me and so many other people pain. I never thought I’d have to feel the intense heartbreak for a long, long, time. Still, mourning my best friend, who died 2 years ago, I was not prepared to be face to face with something so painful so soon.

All I could do is crumble to the floor after I locked the bathroom door of the hospital. My insides ached all over. I didn’t think I was going to be able to walk. I’d commit suicide. That would be my plan, I decided, hoping to cease the debilitating pain. Or at least so I could get out to the car.

Anger surged through me, yet I felt lifeless. If the tears didn’t slide burn on my cheeks, I wouldn’t have known they were actually mine. I felt foreign to this body that knew not how to move from the current state of paralysis I was in.

My mother still recovering from the anesthesia, was half listening as the doctor who did her endoscopic biopsy, pulled up a chair to discuss what he found. I knew it was bad news. I knew because he had just been talking to another patient two beds over, divided by curtains, while standing.

I didn’t want to cry in front of my mother when he announced that, she did in fact, have a 4cm malignant tumor on her pancreas. He had just pierced my heart with his words.

“She has pancreatic cancer” I had been researching it all over the internet, consumed by it, since the week before she went to the emergency room with jaundice.

She had an ultrasound on Friday, a CT scan on Monday, and the biopsy exactly one week after the ER visit.

Throughout all my research, I found nothing but horrible news. Poor survival rates, “#2 silent killer” is what one website referred to it as. And even though the doctor told me not to go based on everything I’ve read online because it’s all outdated information anyway, I couldn’t believe him, and how could I? I thought it only made logical sense, and how could it not? I just couldn’t believe that every single thing I read online was inaccurate.

I have spent every single day since, googling different keywords, hoping, desperately seeking some glimmer of hope. I just couldn’t live without my mom. I just couldn’t.

When I wasn’t googling information about pancreatic cancer, I was googling painless ways to commit suicide. I was not going to live without my mother. I felt like everyone kept leaving me. Sure, it sounds selfish, but I never am anything but positive around my mother. I didn’t want to be a beacon of pain when she was still in positive spirits. And whether she cried when I wasn’t around, I do not know. But I did know that I wanted to be the one to control when I die.

She’s been referred to an oncologist, and the doctor who did her biopsy, told her that she is a good candidate for the Whipple procedure. He would make the recommendation and then we’ll go from there;  it’s all a waiting game at this point.

My heart is broken. My heart is irreparable. I feel guilty that she’s the one going through this. I want to give her my pancreas, my everything; I don’t want her to suffer. She retired three years ago, and she is so full of energy and life, and I’ve done nothing but NOT live my life. I’ve done nothing, but allow depression to consume me, anxiety to fill me with fear and panic, that I stopped living. And yet, here she is, diagnosed with cancer. I cannot live without my mom. I just can’t.

How can this be true? How can something like this just change your life forever-in an instant?

Four months ago, in late March, she started complaining of abdominal pain. Her doctor suggested probiotics. They didn’t work. She begged them for a CT scan, but the insurance wouldn’t cover it. Instead, they referred her to a digestive disease specialist, but they couldn’t get her in until August 3-one day after her biopsy. It took her to develop jaundice and her bloodwork to show elevated bilirubin levels for them to take action. I am angry. Each day, after that ER visit, symptoms developed rapidly-every new day brought on a new symptom. It was so scary to see the whites of her eyes and her skin so yellow.  There was no way I could be in denial. I tried to be positive and tell myself it was a benign tumor or maybe even a cyst, but that quickly waned when the information from the many google searches vividly flashed over and over in my mind.

Along with the biopsy, they also inserted a bile stent to decrease/eliminate her symptoms. Her skin, no longer yellow, she’s no longer itchy, and her stomach pain has ceased. But none of that changes what the reality is and I just want to be near her all day, all the time.

I’m scared. I’m broken. This can’t be happening. I keep taking deep breaths because the pain is that deep in my lungs. I’ve been coping with Xanax, sleep, anxiety, Xanax, more sleep.

The other day, I picked up some low fat, low fiber foods at the grocery store for her, and I just wish I could cook all of her meals for her. It scares me that her and my stepfather’s daily routine will not change. Since my stepfather was declared permanently disabled for spinal stenosis (he’s also had multiple surgeries and is still not completely free of pain), they are used to going out to lunch daily-she usually used to just eat a small meal-but even now, my stepfather wants to carry on with their daily routine of going out to eat. She asks for no butter, no oil, but is that really enough?

I have so much fear and worry, and absolutely no control…I can’t think of anything other than this.

My thoughts waver back and forth, like a radio station playing a sad song and then another station playing an upbeat song-never in sync no matter how hard I try to just keep the positive, hopeful thoughts on replay, but they just quickly transform into radioactive sparks and shocks that leave me googling things I shouldn’t be.

My thoughts are cancerous cells that spread throughout my mind and body, and the more I try to divert my negative thoughts, the more vivid and abrupt the negativity becomes.