Deborah from Maine
Almost three years ago we received the shocking news that my strong, active, funny and adorable husband Roger had a small tumor at the head of his pancreas. He was 75. How could this be, we had weekend plans and had just rented a vacation condo for 30 days, to be enjoyed in the winter. We couldn't believe our ears and thought, what now, what will we do, what's next, will he be in the less than 5% that survive. We didn't have long to wonder, inside of a week he came down with acute pancreatitis, (the result of several biopsy needles going into the tumor area). He was also severely dehydrated and hospitalized for the next three weeks. As he lay in the hospital bed with me guarding him like a Pit bull, he became sicker and sicker. In about eight or nine days of no improvement they scanned him again and found his gallbladder was gangrenes and had ruptured. He was rushed into surgery so fast they allowed me to stay with him until he entered the actual operating room. As his wife, caregiver and protector I felt so strong but felt more helpless than I’d ever felt before. Our life was no longer in our own hands. We have since learned life was never in our hands. After coming out of surgery he failed to improve. We didn't learn until after we were home, from another doctor that he had gotten sepsis. He suffered in the hospital for all this time and no-one ever mentioned the word "sepsis" ever to either of us or to family members. I learned if you don't know what to ask you might not get the information you should have. Our family doctor mentioned it in later discussions. We added that to our list of shocking news items. He was near death and we were the only ones that didn't know it.
When Roger was released, I was given a crash course on flushing his pic-line and connecting him to nutrition at night as well as disconnecting him in the morning. These procedures and connections needed to be sterile, I was taught the protocol. If I made mistakes, he could get infections and die. Home healthcare was ordered while he had a healing wound and until he began to eat again, about three weeks. While this meant I would be glued to his side, I was glad to take care of him. At this time we still owned and operated our business, a 30 room two story motel. Once Roger was diagnosed, we literally disappeared from the motel but knew we had a few good and trusted employees that would take up the slack. They did that with no disappointments. They hugged me and cried with me more times than I could count.
For the next three months we learned about chemotherapy and Roger started going to sessions. He would be in good shape for day or two and then it would hit him, and he would be quite sick and need a lot of care for four to five days. Every day, even on weekends I would go to the motel to see what was going on, it gave me an outlet. It was my only outlet. After three months we received a call from the surgeon. She said now that he was stronger she wanted to surgically remove the tumor. Yes, he was within the 20% who's cancer is found early enough for removal. This meant he would undergo one of the worst surgeries in the world, the Whipple procedure. We weren't complaining, and Roger was relieved to be able to have it. I was reluctant but knew it was Roger's only hope for survival. He didn't complain, didn't worry, I think he was protecting me. I realized he was a superhero. We would not think about things until we had to and didn't debate what we couldn't change. Roger would need to be off chemo for four weeks before surgery. It just so happened some of our friends were signed up for a seven day cruise during the same period so we signed up last minute and went to the Caribbean. This was a great idea. This meant someone was going to take care of both of us and that person wouldn't be ME.
We came home from a restful cruise and within a few days Roger went into surgery. We booked a hotel room near the hospital the night before so we wouldn't have to ride in the car two hours before he was prepped for surgery for a six hour surgery. He said he was not nervous but fell out of bed that morning, thankfully the bruise above his eye didn't show up until he was in the recovery room, still unconscious. No, we didn't tell them. He did well coming through surgery, he made his milestones and was released in six days. I received more crash courses at the hospital, he came home with tubes, drains, a feeding tube and a wound. Besides monitoring the tubes and drains, I measured liquids and hooked him up to food again every night and unhooked him every morning. Still neglecting our business, we had received word that one of our employees was interesting in buying it. He would work on financing, woohoo. Everything else was up in the air, the motel sale might as well be up in the air too. I might add that I was petrified to own that business myself and have to sell it myself. I had always been more operational, Roger knew everything about the finances.
Roger improved to a new normal and resumed chemotherapy, driving himself when he could. We lived less than a mile from the hospital and going alone gave him some independence. I no longer did much for myself except checking on the motel operations and a monthly hairdresser appointment. I needed this and it gave me something to look forward to, something that would make me feel good. For a caretaker, when something happens to your patient, it is happening to you too. I was so drained but having no life of my own was fine, I loved Roger and wanted him to have what he needed and have it delivered cheerfully. The following October, four months later, Roger's scan showed no evidence of disease. He was in remission. I felt the weight of the world drop off my shoulders and told myself I was not going to think about cancer again unless or until someone has told me it was back. When Roger mentioned it, I reminded him he didn't have cancer, he was in remission. Little did I know we hadn't fought the hardest battles yet. This year, 2018, we planned and took our trip to Arizona for that month that we lost last year. The sale of the motel was progressing. Inspections were done and financing was difficult for the buyer but do-able everyone thought.
We had a great vacation, but pain started to invade Roger's chest once again. We didn't have to wait for the scan to know the cancer was back.
We learned within a short time the cancer was back with enlarged lymph nodes in Roger's chest, possible lung spots and a recurring tumor at the surgical site, at the head of the pancreas. Pain had come back full force and he needed to go on very strong medication. With dread Roger resumed chemotherapy but this time with a cocktail of drug therapies appropriately nicknamed, 5-FU. We knew this regimen would be tougher to endure than the last one. We were told he would be on this for the rest of his life. We both still had hope. In June of 2018 the motel sold. This year, 2019, in February Roger was forced to stop receiving treatment because of extreme neuropathy. Like many cancer patients, it's a hard decision to stop. This meant we were accepting that he would die. He lost weight, could barely eat and when he did food didn't taste good. It was a struggle getting enough water in him, so he wouldn’t be dehydrated. We were still not on hospice, so we had one more scan scheduled. This is when I really began to feel I had lost myself in Roger's care. To think of myself was not an option. The August scan showed the no sign of cancer except for the recurrent pancreas tumor and that had not grown since treatment stopped. All signs of metastasis were gone. Roger was still in extreme pain and taking a lot of painkillers each day, putting him in a zombie state. He would do anything to get off those medications. We were presented with the option of his receiving radiation for the pain. We did do that, driving to treatment for ten days. The treatment worked but left him weak and tired. He had zero pain, but a person just can't stop taking oxycodone cold turkey.
As I write this Roger is almost completely off pain medication but is weak, tired, losing weight, unsteady on his feet and nauseous. His cancer is small, contained and not growing. His body is so beaten up, he needs me with him for every step he takes. We have been receiving hospice for a week. I am happy to have added support and they are delightful people. I pray now that his passing will be easy for him. I know I will have to find myself again. I don't think I will ever be the same after these past three years. I am filled with sadness but there is a tiny spark that tells me life can be good again. I have loved, I have done all I could but it's his time to leave. He says it's okay, he is probably still protecting me. I will heal, I want to heal, I will remember this kind and brave man and be thankful for all the time I had with him.