3 Months Watching Pancreatic Cancer
3 Months Watching Pancreatic Cancer
A little over a year ago my dad stopped by to say happy birthday to his youngest grand daughter. Annoyed he didn’t know what to get her because “they already have everything” he showed up with a slash pad for the summer. His health has been shit forever but that day his ulcer had him hunched over in pain. I told him I didn’t care and he better show up. When he arrived he asked me to grab him some meds from the pharmacy and assured me it was just his ulcer. He was quite and struggling but he stay and watched the kids. I believe him about the ulcer and he believed himself.
The following day I received an angry call from a customer. His screws had been left off his order and an entire 6 story building had been brought to a screeching halt because there wasn’t a screw to be found. This is 2 things. 1. The bull shit a hung over carpenter yells on a Monday morning and 2. No way to start a Monday morning. I decided to take advantage of the opportunity to leave the office and drive the screws to the new hospital expansion myself. I delivered them to an incredibly friendly (always a change of attitude when you show up) carpenter and headed back to my car when I received a call.
“Hey I passed out at work. An ambulance took me to the hospital. Can you bring me some underwear”. There was no explanation. No reassurance of being okay. Just the absolute need for fresh underwear. I obviously asked 20 questions that all went back to an ulcer he’d been dealing with for years, not eating, and stress. He had to stay the night for test but was feeling better and doing fine.
“Call me” is all I received a few days later. “Hey bud. They thick I have pancreatic cancer”.
The hospital they brought him too was about an hour and a half away. This gave me plenty of time to run through every possible scenario. Mostly I figured the test was wrong. He had a way of cheating death. Insane car crashes, trips down steps, once winning a class action lawsuit due to a doctor prescribing his meds for multiple years with no medical license. So obviously the test were wrong. An ulcer mixed with some gas.
When I got to the hospital, and to be honest for the next 3 months, doctors told me stats and test results and medical terms. All of which I had no clue what they meant. So I countered with all I knew how to do. Keep the room laughing. This has been and always will be my armor in sad or awkward situations. If I can make everyone laugh, everything’s ok. I learned it from my dad and we had a field day with it for 3 month.
After a week we got him home with a fresh diagnoses of pancreatic cancer and a literal binder of appointments needed.
With every ounce of my being, fuck all health insurance. My dad’s insurance had a list of everything they did not cover, including cancer treatment. In between scheduling appointments I also was tasked with trying to find coverage for those appointments. Luckily he should have qualified for medical assistance. Unfortunately the state of Pennsylvania had an open case for him. With no records, or way to close it, or details on it, or the slightest bit of customer service. Because of this New Jersey prevented him from opening a case. While facing a cancer with a 13% survival rate his insurance said “not my problem” and New Jersey said “not my problem unless you can get PA to say there’s no case” and Pa said “idk what you’re talking about. We don’t issue documents like that.” There was no funding or insurance for all this. We asked every doctor to bill him later or he paid $300+ for appointments. But enough about the most powerful country in the world having the most predatory healthcare system.
In an effort to keep my kids from knowing anything was wrong I tried my best to dad as much as possibly and care taker when they weren’t looking. We went down the shore for the week and my dad stayed at my house with my mom who had recently returned from California. Divorced but buds. When we returned I found him pale, half conscious and unable to stand. My mom showed me the blood soaked sheets from his coughing fits and told me he refuses to go to the hospital. Quickly I kicked out the wife and kids and called an ambulance.
Back to or absolutely fucking terrible health care system. Two paramedics entered my house. Not like the ones you see on tv but more like the people who rip tickets at movie theaters. After I told them he could hardly stand or form sentences they proceed to ask him a lot of questions about standing and walking and what he ate the past few days. I’m sure this is protocol but ya know, read the fucking room. They strap him to a stretch and then debate which hospital to take him to. The local hospital he’s been going to or the one that’s a few miles closer. Know how much an ambulance ride cost? A lot. Don’t sweat the extra 5 miles on the motor to take him to the right place. After I asked them multiple times they finally agreed to take him to the hospital he’s been going to.... with the cancer building.
At the hospital we checked in through the ER. Btw the hospital just so happens to be in the center of once of the worse cities in America. My dad had cancer and a bleeding ulcer, his 100 ER roommates were just over dosing. This was just temporary until a room in the hospital opened up for him any minute.... or 3 days later. When he finally got a room we finally started making progress. Test after test after test. Stage 3, bleeding ulcer, the anxiety of how he’d pay for all this when he got out. In between the emotional lows he was new again. He was less helpless and more talkative. We joked. We watched movies. We bitched about him being woken up every two hours. It wasn’t by any means good, but it was better and felt like there was a little hope. The ulcer required blood transfusion and that really turned it around. If they could get the ulcer under control, they could start chemo.
A month into his hospital stay he really fixated on what his life would be like when this was over. Could he go back to work? How would he handle the insane hospital debt? The stress grew and with the stress so did his ulcer again. Mid conversation he cleared his throat and filled his hand with blood. He looked at me scared and said “call the nurse”.
With in a minute 10+ doctors and nurses were running lines and calling out numbers. It was some real tv drama shit. He was rushed to the icu and I was sent to the waiting room for hours. When they finally let me in I passed a customer from work. I asked “hey man how’s it going?” And he gave me an awkward nod because obviously not very well if we’re both standing in an ICU. I entered my dad’s room and he was defeated but he was still here.
The ulcer had flared up again and had been bleeding. This required more blood transfusions, more test and delaying any type of cancer treatment until this was resolved.
The cancer was growing. The liver, the lung, and larger on the pancreas.
On my next return I was asked to fill out power of attorney information. I did and when I did they told me “we can keep him comfortable and keep trying but he needs to start making preparations”. My dad’s only goal was to get out and see his grand kids again. I wanted that for him so bad but getting him out became harder and harder. Without insurance there was no at home care available for him and to be honest I was terrified to let the kids see him in his state. I don’t know how much weight he lost but he was half his size, hair over grown, no muscle at all. Pale and fragile. They never saw him like that. They don’t have to remember him like that.
A doctor I didn’t know requested a meeting with me, my mom and him discuss what’s next. When I arrived to the meeting we were joined by a 14 year old doctor who was going to hit puberty any day now. He explained the cancers progression and how the ulcer was preventing us from doing anything to treat the cancer. The ulcer was now unable to heal due to the fragile weak state his body was in. There was no other options other than to make him comfortable. “I’m going to die” my dad said to a doctors 1/3 his age, who may have been doing this for the first time. “We’re doing go do everything we can for you. And we’re going to help you not hurt”. This child doctor was incredible. Of all the doctors we spoke with this was the first human. He was caring and took time and answered every question. He made things easier for my dad. Not better but easier.
Now stable and officially in hospice care we move rooms again. This time to a floor that’s much older looking with shared rooms. Essentially, deaths waiting room. My dad’s new room was shared with an older Spanish man dealing with some stomach issue only separated by a curtain. I fought every day to get him into a private room so he didn’t spend his last months or weeks with a man shitting in a bucket on the other side of a curtain. One day with a 0 personality, useless doctor explaining my dads symptoms and what they mean along the lines of his death my dads room mate, at no fault of his, took the loudest, worst smelling shit I’ve ever experienced... in his own bed. We’re having a family discussion about DNR’s and pain management with the sound track of bubble guts and groaning “it’s everywhere!” I used this as ammo as I pleaded my case to doctors, nurses, cleaning ladies, kitchen staff, bums outside, to not make him die in this environment but I was always informed they were trying but nothings available yet.
After a week or two I showed up for my visit and my dad wasn’t taking. I continued trying to find the humor in anything and got no more than one or two works. The following day I got no words. Then they moved him to a quiet room. When I showed up to his room I realized where I was. This is where he dies.
He didn’t know I came in. He laid slack jaw, eyes half opened with the tv quietly playing in the background. This room was significantly nicer than the rest and only lit by the sun coming through a wall size window. I sat with him before a woman asked if he ate his breakfast “I don’t think he eats anymore”. No response, she just cleared the tray.
The following days was the same but with occasional groans and these jerk motions where he’d hold his arm up in the air. He always looked like he was trying to find the comfortable spot but it was never there. There was no doctors or nurses checking in anymore unless it refill the pain meds. Breakfast lunch and dinner would be left and then retrieved untouched.
The day before the last. I could see we were there. The breathing had changed from hard to someone willing their self to breath. He wasn’t awake or asleep. The most you could get was a groan and maybe a little eye contact. People kept telling me to tell him it’s ok to go. I couldn’t do it. A doctor came in and told us it would be a day or so and I snapped at him not to say it in front of him. I knew it was a done deal but I didn’t know if my dad knew and I didn’t want to believe if. When everyone left the room I squatted down next to him. “If you need to go it’s ok I get it. I’ll be ok. If you wanna stay around a little longer that’s ok too. Just send me a sign if you can. I’m going to tell the kids everything about you. I’m sorry I couldn’t get you out of here. If you and me like it’s always been. I’m here. I love you” and then he squeezed my hand. I called in the priest and had his last rights read. I needed to get home but I was scared to leave and I fell asleep next to him in the chair.
The last day on earth. In the morning I picked up my son and grabbed some of my dad’s cash. We headed out to Round One (my son’s favorite place) and headed up the escalator. Before we went in I to my son “pop told me to tell you he still doesn’t feel good and he’s sorry he missed your birthday. He asked me to take some of his money and bring you here because he knows it’s your favorite. Go nuts play whatever you want. It’s on pop and he loves you”. That kid won so much shit on the crane machines. He was absolutely ecstatic. I hope he remembers that was from pop. I dropped him off and headed back to the hospital. I put some of my dad’s favorite music on and told my dad all about the birthday present he gave his first and only grandson. His breathing was different today, the jerking gestures were gone. All that was left was a shell slowly going up and down with loud raspy breaths. A year ago he was unhealthy but he was moving and talking and texting me how much he loved watching his grand kids play. Now he was deflated and silent. Suddenly he looked irritated and started to move a little my mom and I jumped up and went to his side. She began talking a mile a minute with love and promises before I told her “shut up”. We were both silent and with one last gasp, my hand in his, he relaxed everything. No grip, no movement. Head laying to the side eyes slightly open. I knew what it was but I waited for one more breath.
I had to ask a nurse to come in. No one gives you any instructions for when it finally happens. I walked into the hall and questioned what I would say. “I think he’s gone”. She walked him, held a stethoscope to his chest. “I’m sorry for your loss”. “What do I do now” I asked. “You can stay with him for or you can go”
Eventually a few more doctors came and went filling out paper and talking among themself while I sat in a chair next to him. When the room was clear I gave him one last hug. “Thanks for everything. Don’t forget my sign” and I walked out for the last time. I sat at the end of the hall in a waiting room for 5 minutes or 3 days. I couldn’t tell. I called my family and told them “it’s done”.
I drove home alone mixed between shell shocked and devastated. I headed straight to my room and I stared at the wall for an hour. It was done. What do I do now? Go to sleep? Do some laundry? I decided on self care.
I ordered a cheese steak I parked in front of the tv and I put on Richard Pryor: live on sunset strip. My dad’s favorite. I remember him showing it to me at 13 and changing my sense of humor forever.