Post Whipple: 14 months later

by Leave a Comment

I could go into how much time has passed since my mother’s initial diagnosis or her successful Whipple procedure, but everyday gets celebrated because the overcast, while not as dark and gloomy, still casts a shadow.  It’s being grateful, feeling thankful for each and everyday; every moment while at the same time being reminded of why you are actually more aware and in tune; present in each day and moment, whereas before, like most, you just live your life not really reveling in your existence.

We went to Florida. A week prior, my mother was able to have the port removed, which felt like another step away from that overcast that came storming in so abruptly. As her C19-9 number stayed steady in 9-11 range and all her blood work came back normal, we were elated and excited to go relax and celebrate with the white sand, rolling waves, angels being cradled by a sky that’s painted in watercolor. We had stepped out of the shadow and were etched into a beautiful, serene painting that we reveled in.

Fast forward….

October 2018, follow up visit as scheduled c19-9 number was 17. While dr. wasn’t concerned and said it was normal, I was walking away with angst digging a hole in my stomach. Still, she didn’t have any problems or symptoms, so another follow up appointment was scheduled for January.

November 28, 2018 One year since her Whipple procedure. She experienced severe upper stomach pain on the right side, nausea, vomiting, which later (when morning came) was determined to be gastritis. I should add that her digestive system has vastly improved by this time, and she was able to add a few more foods once in awhile without problems.)

January 16, c19-9 elevated to 46.  Dr. proceeded with follow up questions regarding any symptoms or problems that she might be or have been experiencing. CT Scan scheduled for January 21. Liver enzymes and all other blood tests were normal.

Results of that CT scan: Found a a spot on her liver less than the size of a penny. Liver biopsy ordered and scheduled for January 29.

I realized as I was writing, that I felt like I was a med student writing notes on a patient that was unfamiliar to me. I guess I just feel so numb from all the anger. And although I feel th, I also feel Florida.

I guess it takes awhile to get the results, but we’re all hopeful that it’s nothing serious. However, and of course, I took to the internet to try and summons up what Google could offer me and decided to go the route of research articles (granted I don’t have full access to a lot of the articles based on the topic of liver lesions and Whipple Procedure) I read an article Case Report Asymptomatic Liver Abscesses Mimicking Metastases in Patients after Whipple Surgery: Infectious Complications following Percutaneous Biopsy—A Report of Two Cases (I read more, but this is just one)

Of course, I’m not that naive to rely on the internet for a medical diagnosis or answer, especially when you have to actually be a doctor to access a lot of the research sites. However, one thing, I do feel angry towards the doctor who I feel should’ve ordered a CT scan sooner. I have notes saying CT scan follow up 4-6 months from the date of Whipple procedure, but I guess they’re going based off the cancer marker number and her symptoms. I think I’m always to have this major distrust towards doctors. I’ve come to feel that they don’t try to stay ahead of any health matter; there’s no urgency unless you are your own advocate. And even then, between insurance companies and various medical hats in the ring, are you really your own health advocate? However,  I also realize that since this extremely personal and important to me, you know, because it’s my mother, that I’ll never believe that they are ever doing “enough”.

 

Post Whipple, post chemo follow up

by 1 Comment

I haven’t written anything in awhile, but it’s hard to sort out in my mind what I want to actually say when I tap on the keyboard forming word after word until it unfolds like a sentence that makes everything so definitive.

When you have anxiety and panic attacks, well, your mind churns out scenarios by the millisecond and none of it is pleasant. For a moment, after my mother’s eighth chemo treatment (4 post Whipple), I was riding high, I was untouchable, everything seemed to fall right back into place as if a clock started ticking counterclockwise. My subconscious, on the other hand, is determined to not let me forget, it would only conjure all my worries and fears. It was good at that. I don’t sleep. I mean, I have always had a problem with insomnia, but I find myself sinking into my pillow, as though I’m on a cloud, but on a cloud in the middle of a thunderstorm. My mind usually drifts towards my mother, sensing that she’s awake too; worrying just like me, alone with our thoughts, five minutes between us, laying among the darkness that lingers in the room. Her voice echoes in my mind, she’s always saying, “I get tired of talking about this, it’s all I do” I tell her that it’d be difficult to think about anything else, and that it’s okay that she does. But I feel like she still thinks she’s a burden. I remind her that cancer is a burden, she is not the burden.

We usually talk on the phone at the same time every day, for an hour 2pm-3pm. It makes everything seem normal, like nothing has shifted, it makes me forget our “new normal”.

We like to go to the casino and gamble a bit, not too much-$20.00 or sometimes we slip an extra $1 or 2 hopeful that we’ll leave there with a little more than what we started with; hopeful that we will have beat the machine.

My mom had her first follow up appointment since her last chemo treatment yesterday, the doctor told her that her cancer marker (CA-19-9) looked good-it was 11. My mom didn’t think so, and my anxious mind didn’t hesitate to want to fire questions until the fuel had run out.

“Oh no, it went up” I could hear the strain in her voice. My ears were burning. My entire body was getting hot and my face was turning red. Six weeks post Whipple, her cancer marker was 5, then 7 and now 11. The doctor assured us that it was fine. She said, “You could come in here tomorrow and get blood work and it may be lower” and “A man had cancer that metastasized, and post chemo his numbers went up but nothing was found on the CT scan.”  But of course I had to google it. And of course, I must have found a dark path that led me to what seemed to me to be the dark web. What I was finding online was like walking along the edge of a skyscraper in complete and utter darkness.

I did get in my car after that, and cried what felt like water drowning me. The new normal has yet again emerged. Follow up appointments, CT scans, bloodwork, wondering, worrying, praying and praying, feeling at times, God, my dad, my grandma, grandpa, and best friend were with me trying to ease my anxious thoughts and asking for me to have faith. It is so scary though.

I want to go away on a little trip with my mother, just me and her. I’ve never taken a trip where it was just me and her before. She loves beaches, so we’re trying to decide Florida or Cape Cod. I’ve never been to Cape Cod, so that may be the place. Today, during our phone call, we talked about all the places we’ve ever dreamed we could go. Greece, Australia, Italy, Hawaii, Ireland were the top choices, but she said that now, and the older she gets, the places that she once dreamt about going seem so distant and left in the past. Now, she said, “I just want to go to a beach”.

Whipple Procedure

by 2 Comments

My mother had her surgery -the Whipple procedure- 5 days ago. The surgery started on time, at 7:30 am and ended around 3:30 pm. She was in the recovery for 2 hours before they moved her to a room closer to 6 pm. The surgery was 8 hours long due to the tumor being near a major artery. The doctor explained that he took a vein from her groin to somehow connect it to well…medical jargon. But the important part is that he said he got the entire tumor out. He said, “it went super good”, and that he, “got it all”. She has to follow up with him in 1-2 weeks to go over the pathology results and will decide the next step from there.

The next morning, around 9 am she had already gone on two walks around the hospital, drank some water, broth, and cranberry juice. Around lunch time, she ate fish, carrots, and mashed potatoes. Shortly thereafter, she started feeling nauseated and throwing up. Not really sure, if it was the food or the pain medicine that someone gave her without her consent-(but not going to get into that here). She threw up three times -bile-the nurses took it to test it since they said that it wasn’t normal…totally not what my good ol’ google education taught me.

Me and my stepfather stayed with her the throughout the night. It took awhile to get her some Zofran-almost 4 hours or so, and until they finally came with that, she could not sleep. I kept bugging the nurse because I felt so awful-it’s difficult to watch someone suffer without being able to do something about it. We stayed up the entire night making sure my mom was comfortable; adjusting her pillows and blankets as needed, helping her get to the bathroom since she was a fall hazard, cooling her down with a cold washcloth. I must admit, I’ve never seen my mother so vulnerable before this, but even when she’s vulnerable she’s a fighter. My mother amazes me.

After that last meal, they decided to put her back on an “IV diet” for the rest of the night and throughout Thursday. My stepfather stayed with her again Thursday night. I got to her room around 12 pm and she had already gone on 3 walks, was back on solid foods, and as she puts it, “she’s just a little sore”. The doctor and his physician’s assistant removed the drains and IV and any medicine she had to take was administered orally. She was also given a shot, (which my stepfather had/has to give to her), and will have to get for the next two weeks to prevent blood clots. She is also taking Imodium for diarrhea and Pepcid to prevent ulcers.

I stayed the night Friday night, and by 8 am on Saturday, her birthday, the doctor gave her the good news that she was ready to go home.

Everything I have read on the Internet about this cancer thus far, has not applied to my mother. While anxiety still lurks, I do realize and appreciate that everyone is different, and now know that the Internet’s sad stories overshadow the individual victories; small or big.

The Biggest Demon

by 6 Comments

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

by 2 Comments

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.