Help My Dad Stay At Home

What makes a house a home? Is it when you're handed the keys to a lifelong goal? Is it when your only grandchild walks through the front door for the first time?

When does that labor of love turn into a literal lifeline?

My mom and dad began the first steps towards simplifying their lives in 2014. For decades, they put their money toward rental properties that they eventually had to leave behind, one by one. Whatever improvements my father would make with his craftsmanship were left eventually for someone else to profit from. If he was going to keep doing what he loved and eventually find their way to a region of the country where they could live out the rest of their years in a financially responsible way, they would have to build equity, purchase a fixer-upper, cash in on their hard work they had put in so many times before, and move.

Things were going well until they weren't.

When they came to visit me, their only child, in May of 2022, they had two things on their agenda: look for a cheaper place to live and spend quality time with family. Plans changed quickly, that visit. Daily, my father began to experience excruciating pain in his back and stomach only being distracted from it by periods of violent vomiting day and night. He went without food for days; choosing hunger over pain that only got worse with anything he took in. He couldn't sleep. He stayed in bed or on the couch most of the time. He was exhausted. By the end of those two weeks, knowing they had more than 800 miles of driving ahead of them, he relented and went to the Lexington Veterans Affairs Emergency Room.

It was his gallbladder, and he was told he was filled with stones. As a nurse, I knew people could go years with gallbladder issues before anything surgical was done. I prepared him to change his diet, decrease fatty foods, expect flare-ups. I told him he didn't really want to lose his gallbladder and the issues many people reported after having theirs removed were troublesome.

Once back in Connecticut, the doctors at the West Haven Veterans Affairs Hospital immediately recommended complete removal of his gallbladder. I was taken aback, but it had been some time since I, myself, had worked in a hospital and treatment recommendations change over time. I was relieved that he wouldn't have to suffer through episode after episode of the pain I had seen my former patients go through.

After the surgery, Dad felt some relief. He could eat again, and his pain was . . .different; but it didn't let up. The surgeon assured him that healing takes time, and the pain would eventually subside. I agreed. Afterall, an entire essential organ was removed from his body. Time and patience was all he needed. But Dad was insistent. Something just wasn’t right. As days spread to weeks, the pain only got worse and he was back to not eating. So back to the hospital he went again, and again, and again, until finally an ER visit earned him a hospital stay. He was jaundiced and his liver function was awful.

Surgery was scheduled again; this time, to place a stent. Once again, he could eat. He was in less pain-- and then another flare up.

This time, exploratory surgery revealed the stent to be covered in hard plaque, unable to keep up with whatever was not draining properly. Also, he had a bit of pancreatitis going on; a portion of that organ seemed to be going bad.

So, a new surgery was proposed, scheduled, and eventually would be performed. The surgeon would go in and cut out part of the pancreas that no longer seem to be working and connect both the liver and stomach straight to his small intestine for digestion. Most of his pancreas would remain, but be disconnected from everything else. He would probably need to take medicine for the rest of his life to help digest fats, but it was a small price to pay to finally get things better. To feel better. There was also a question of a small mass that was visualized with the CT scan they took. The surgeon was careful not to call it a tumor-- just a growth of some kind, to be determined-- right where the liver and pancreas meet and drain into the stomach; and this was no ordinary surgeon. He was on the oncology team.

Better safe than sorry, I thought. But this time I flew up to visit beforehand as anything can happen with major surgery, and this would be his 4th time under the knife. I made sure to balance my duties as a daughter with my experience as a nurse. I work in home health, so I asked myself “What would I do for a patient?” often. I also asked myself “What would I do if I knew I would never see my dad again?” Then I did both. It was a great visit, but short. When I got back on the plane after just arriving two days earlier, I took a deep breath, said a prayer, and began to wait.

The surgery was a success. “They got it all out!” my mother gleefully reported. Dad was tired and although the pain was once again different, it was more than difficult for him to handle. The surgeon sent off all he removed to be tested.

The following weeks felt almost as long as all the months leading up to them. Sleep was a couple of hours a night for Dad. Hunger was completely gone. He lost pound after pound, the thought of his most favorite foods making him sick. He went from slim to skinny to skeletal. And the nerve pain was the hardest part, unfazed by his medications and taking over his whole body. Any day now, we would know the results. Each day we waited, each day ending with no news at all.

Until March 2023, 10 months after this whole journey began. I was back in Connecticut; this time, with my husband Ben and our two year old daughter Yasmeen. One day while relaxing, the phone rang. I heard my mom call my name from the other room. It's a tone of voice that spells urgency, but I could tell she was also trying to control herself. She had one of the doctors on speakerphone, the phone placed on the middle of the bed Dad was lying in. “Repeat what you just said. What stage is it?” my mom asked. The voice on the other end of the line replied “Stage Three.” I could tell my parents were both trying to find the flip side to this difficult news. The heart of the nurse in me sank. The heart of the daughter in me sank deeper.

Once the phone call was over we all said a prayer and for the first time mom pulled me aside and we talked prognosis, final days, planning, logistics. . . no emotions. Dad found us shortly after. He and I had already discussed these things before this last surgery, but it was much better discussing it all together. Still, there was hope, and definite treatment options, and 6 weeks later he had a port placed (surgery number 5) and his first round of chemo started the day after that.

His drug cocktail is an aggressive one. He gets three infusions at the center and then one more that he is hooked up to for two days after at home. This goes on every two weeks. So far, he's had anaphylactic allergic reactions twice, one of which occurred during his first session at the center, and the other which sent him to the ER. This requires him to get iv steroids and antihistamine treatment to keep him from going into shock. He's had three total sessions to date-- nine left. Each time, the infusion has to go slower than the last to try to prevent his tongue and throat from swelling up. The last session in the hospital was 13 hours long. It's not common to continue pursuing a treatment your body reacts to in such a dramatic way, but there's no turning back, now.

You see, his cancer markers were just analyzed last week and he has now progressed to Stage 4 Pancreatic Cancer, the final and terminal stage. It's been living and growing inside of him all this time. Being close to the hospital and close to his cancer team has been one of the few positive factors in this whole experience. The others are his resilience; his determination to fight fueled by faith; the stalwart support of my mother who is there by his side day and night watching him fight this disease and cheering him on, cooking for him, and being strong for him; the love and support of his family and many friends; and resources like this site, GoFundMe.

With a goal of $35,000 met, my dad will be able to stay close to his treatment team and emergency services. He will be able to see the chemo through in one of the most financially challenging areas in the country to call home, that he’s called home for over 60 years, in a property that is finally their own home, but where he now only brings half of his usual income hooked up to an IV and working as hard as he can from home on the few good days that he has. Some days he can only sleep.

I can hear the strain in his voice just to talk when I call him to tell him I love him. I hear the worry when he tells me that their savings is gone and they have three months left before they are completely broke. It will help them make it until he hits remission and can finally make the move to a more affordable area to live where he can still get quality care with clinical trials, maintenance chemo, genetic testing and more.

When you can just about see the end before you’re ready, when the doctor tells you to get your affairs in order and your affairs are dwindling day by day, every small act of kindness and generosity is a big deal.

Please, share this with your friends, your family, your workmates, your social media feeds.

Please help my dad stay at home. Thank you.