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When Cancer Wins: A Surviving Spouse's Story Chapter 5 - Summer From Hell We were now in late June, and school was out, so Brad was home full-time. A blessing for me as I needed his help by this point, but for him it would become a summer from hell. I know I’ll say it several times, but no 14-year-old should ever have to endure what he experienced in 2006. His prior 13-year-old innocence was quickly replaced after his birthday, first with a medical knowledge that normally warrants extensive schooling and then with final-life caregiver skills that can unfortunately only be learned through experience. Jan would only get one more chemotherapy session. By the end of June, she was weak, frail, and could hardly walk. She had lost more weight and was down to just 93 pounds. Her blood counts were still okay however, and we made another trip to Owen Sound for chemo. We had to use a wheelchair to move her from the car to the hospital. The Carboplatin and Gemcitabin treatment was just a couple of hours in length. The effects were not as severe as the previous treatments involving Sysplatin, and I suppose we were blindly optimistic that this might buy us more time. But a couple of days later, we again had to send her to hospital by ambulance. The Markdale facility immediately transferred her to Owen Sound. She was severely dehydrated and vomiting constantly. They changed her anti-nausea medications and with the help of a constant saline IV, they stabilized her. Her blood counts were unusual and they gave her transfusions to normalize the red cell count. They finally agreed to give us the supplies we needed to administer a hydration IV at home. Armed with an electronic pump and 1 liter bags of saline, we were prepared when another ambulance returned her to our house. It would prove to be her final stay at home. In consultation with the nurses at Owen Sound, and with doctor approval, Jan was also prescribed a nutrition IV, known as Total Parenteral Nutrition, or TPN, for short. TPN provides the body with every nutrient it needs, in an IV form, so it ceases to be necessary for the patient to eat anything. In some cases, patients have lived for years with no other form of nutrition. TPN is supplied as a large IV bag. One bag is administered per day over an 8 hour period. A week's supply is issued at a time and it must be kept refrigerated. The bag has a center divider keeping fatty substances separate from other nutrients until use. To prepare the TPN, the divider is removed and the bag is gently sloshed back and forth to mix the different fluids, then vitamins, drawn from tiny vials by syringe, are injected into the bag. Sterility is a must and a face mask is worn while preparing TPN. Preparation time is about 20 minutes. We were now juggling three different IVs, several injections and some pills. For convenience, the CCAC nurses had installed a "butterfly" on Jan's abdomen - a "subcutaneous" line that extends just under the skin and has a syringe port on the outside. This way, we could administer some of the medications without constantly having to disconnect and reconnect her primary IV line. From early morning to late night, there was seldom more than an hour or so between IV changes or medication doses. I had bought a couple of plastic cabinets and Brad and I organized all her medications, syringes, needles and other supplies in them, and we took turns making up a supply of preloaded syringes with the various drugs that we'd need throughout each day. Once a week, we received our medical supplies. Initially, it had been one medium sized box. By now, it was one large box of general supplies and medications, one large box with bags of saline, and a large styrofoam cooler with the TPN. A few of the drugs I had to pick up at the pharmacy. Our kitchen now resembled a hospital dispensary. The Red Cross had supplied us with a walker, the kind with four wheels and hand operated brakes like a bicycle, and it was the only way that Jan could now move around the house. Brad and I had installed a "panic button" system, whereby Jan had a switch beside the bed that she could press and it would set off loud buzzer alarms, one in Brad's room and one in the garage. I had instructed her to use it any time she needed something during the night if I wasn't there, or through the day if we were outside or not nearby. One night while I was at work, she stubbornly tried to get to the bathroom without signaling Brad for assistance. As she made the transition from carpeted hallway to the bathroom's vinyl floor the walker got away from her and she fell between it and the vanity. Fortunately, she escaped serious injury but she badly bruised one hip, making mobility an even bigger challenge. About a week later, she fell again in the bathroom and hit her head against the wall, again lucky, only suffering a cut on top of her head. I can't describe what it was like to see such a lively, active person reduced to such a helpless level. CCAC ordered us a commode chair so Jan wouldn't need to try to get to the bathroom. They also got us a wheelchair but by now Jan was too weak for any trip away from home and it only got used once when Brad and I took her out to the pond to see the fish, a brief escape outdoors that proved to be too exhausting and painful to repeat. Jan and I had previously promised Brad that we'd buy him a new bike for the summer. Early in July, Jan insisted that I fulfill that promise. I ordered one and a few days later I drove him into town to pick it up. It was probably the only time that summer that we were both away from Jan at the same time, and also the only time that summer that I saw him smile. When we got it home, Brad took it inside and rolled it into the bedroom to show his mom. I don't know what was more painful for me - watching Jan struggle to sit up long enough to look at the bike and quietly tell him, through the pain, that it was beautiful, or watching Brad's face as he realized that his mother was far too sick to actually appreciate his new bike. By now, I was probably making it to work only about half the time. The bedroom was Jan's world, IV bags and pumps occupying my side of the bed, so any sleep I got was in the form of a nap on the living room couch. It was becoming harder and harder to cope. At work, or anytime I wasn't home, I had my cell phone handy. One night Brad phoned me in a state of panic. Jan wanted a pain pill and, half drugged, had somehow managed to get out to the kitchen on her own where she had taken the wrong medication. I got him calmed down and based on pill counts we worked out what it must have been that she had taken. Luckily it wasn't a serious mistake, but it was a sign of her decreasing ability to think rationally. Chemotherapy was officially cancelled in mid-July. Jan was far too ill to even make the trip, let alone handle the effects of the drugs. It came as no surprise. When the CCAC nurse gave me the news, she also gave me a book, careful to hand it to me face down so Brad didn't see the cover. I sat it on the kitchen island under some papers. Later, when I was alone, I picked it up, turned it over, and read the title - "A Guide to End of Life Caregiving". I took it out to the garage, sat down, and wept as I thumbed through the pages. As July drew to a close, we continued our efforts to keep her as comfortable as possible, and at home for as long as we could. But as each day passed, it was obvious that Jan's condition was steadily deteriorating. Her periods of wakefulness were getting briefer and less frequent. She slept almost all the time. Her weight had slipped down to 85 pounds. Her voice was fading and her words were becoming hard to make out. Sometimes her words made no sense whatsoever, as if her vocabulary had become scrambled. Occasionally she would talk about speaking with people who had been dead for years or ask about things, as if current, that had happened many years earlier. Our prime source of communication had become the simple but loving gesture of holding hands. Caring for her physically was becoming difficult. Even with a commode chair beside the bed, it was not easy to get her there and back, especially with the IVs connected, and all motion had become painful for her, and often resulted in nausea. We had to ensure that she changed her position in bed regularly, to avoid bed sores, but that too was painful for her. I knew she wouldn't be at home much longer.
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