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When Cancer Wins: A Surviving Spouse's Story Chapter 3 - The Only Hope Fades The first chemotherapy session was slated for April 27, and Dr. Qawi suggested that Jan have a PICC (peripherally inserted central catheter) line installed before then, explaining that it allowed for drugs to be administered more easily and more effectively. We agreed, and the line was put in about a week before the first chemo date. The line was inserted into her arm just below the elbow. On the inside, the fine tube followed a vein up her arm and into her chest, stopping just a few inches from her heart. On the outside, a short length of tube ended in a special valve and fitting that allowed syringes or IV lines to be connected effortlessly. We didn’t know it then, but the PICC line would be in use for up to 16 hours a day in the months to come and was the only reason we were able to keep Jan at home for as long we did. With the PICC line in, we now needed the services of a home care nurse. CCAC (Community Care Access Center) provided this service, and we were assigned a case manager and four RNs who would help with all aspects of Jan’s future care at home. We were instructed on the care of the PICC line and taught how to flush it with saline syringes to ensure it was kept clean and open. The nurse inspected the line, changing the syringe port as needed and also cleaning and re-taping the point where it entered Jan’s arm. I cannot say enough about the nursing team - Laurie, Ginny, Donna, and Debbie - they were very professional, but also truly caring and supportive, and I will forever be grateful for the care and compassion that they provided. As the date of her first chemo session approached, Jan was in good spirits. The pain, remarkably, had been kept under control with Ibuprofen, and she was eager to start the treatment, although a little apprehensive about the various side-effects. Despite the prognosis, she was still determined to fight the disease, and I know she truly believed she could win. Her treatment regimen would be cyclical. In each cycle, she would receive two drugs on weeks one and two, one drug on week three, and week four would be a rest week. The plan was for four or five cycles for a total of sixteen to twenty weeks. On April 26, we headed off to Markdale to get some pre-treatment blood work done. It’s a matter of routine to ensure that a patient’s blood chemistry is healthy prior to chemotherapy. Jan’s was fine. The next morning we made the trip to Owen Sound. Dr. Qawi met with us and explained that Jan would receive Gemcitabin and Sysplatin. In all, the treatment would take about five hours. Before each session, they check pulse, heart rate, blood pressure, and weight. Ominously, Jan had already dropped from 122 pounds to 115. The nurse/technicians in the chemotherapy suite were terrific. They were friendly, cheerful, and supportive. Nonetheless, it was a long first day and we were exhausted by the time we got home in the late afternoon. Obviously, we didn’t fully know what to expect. We had been warned about many possible side effects and I suppose we were fearful that we’d see them instantly. But hours turned to days and Jan experienced none. The following week, we again had the blood work done. But while we were getting ready to head off to Owen Sound on treatment morning, the phone rang. It was the oncology department. Jan’s blood counts were out of the safe range and the chemo session was cancelled. Neither of us were comforted by the news that it often happened. To us, a missed session was a chance for the cancer to rebound from previous therapy. Week three came and the blood work was good. It was a short session, as just one drug, Gemcitabin, was administered and that only took about an hour. By this time, we had been advised that Ibuprofen was not a good long term choice for pain control and Jan was prescribed a very low dose of hydromorphone, a similar, but less harsh, cousin to morphine. In concert with other drugs which were intended to abet some of the chemo side effects, Jan was now taking some six different medications at different intervals and frequencies. It had become necessary to keep track of things on paper. Week four was the rest week, and also the first indication of side effects. Jan was having trouble eating and drinking. At first it was lack of desire, then nausea entered the picture. Unable to eat anything other than tiny portions, her weight continued to drop. Unable to drink, she began to show signs of dehydration. To help combat the nausea, we were supplied with, and trained on, a manual pump that administered dimenhydrenate (liquid Gravol) intravenously through her PICC line. This was a 45 minute process, three times a day, before each meal. Before and after, we flushed the PICC line with saline-filled syringes. The drug helped and Jan was able to eat a little but still not enough to stop the weight loss. She was now down to about 110 pounds. She was still mobile, and capable of doing the Gravol IV by herself, and other basic activities. It was obvious though, that her strength and stamina were slowly fading. She was given a prescription for a liquid nutritional supplement, but even when thinned with club soda, juice, or other liquids she couldn't drink enough of it to help. By now, CCAC had contacted the Red Cross and had arranged for a worker to come in to our home to help with housework or assist Jan with bathing, etc. Our son, Brad, was keen to help his mom in any way possible and he had become a key member of our “home treatment” team, able to administer all the medications and doing what he could to make Jan’s life easier. Between the CCAC nurses, the Red Cross, and our own efforts, we were coping with what had become a very stressful and time-consuming lifestyle. Week five of the chemo treatment, in early June, was the start of the second cycle and was again a double treatment. Jan’s blood was okay, but her weight had slipped again by a few pounds. By the time we got home, Jan was absolutely exhausted and went to bed. She stayed there until the next morning. It was the start of a sad trend. She was now spending more time in bed than out of it. A few days later, I was growing very concerned over how little she was drinking. She was very lethargic and extremely tired all the time. In consultation with the home care nurse, we took Jan to the Markdale hospital where she was diagnosed as being moderately dehydrated. They administered saline solution, and she rebounded quickly so they sent us home. Early June, and Jan’s hair, as forecast, had begun to fall out. Small clumps came out with every brush stroke. There was significant hair on her pillow every morning. She was not a vain person, and had decreed that if her hair started to fall out, she was getting it shaved off. I took her to see her hairdresser, and friend, in Orangeville and the deed was done. We got her a hat and a scarf from Walmart. She mostly wore the hat because the scarf became too difficult for her to tie. She really didn’t care about how she looked, and mostly wore the hat to make others feel more comfortable. Don’t get me wrong - Jan was an attractive lady - but she cared more about the comfort level of others than any sort of personal appearance concerns. As for how others can be made uncomfortable by appearance, I’ll never forget the day we walked into a country market near Owen Sound, after a chemo session, Jan with shaved head and no hat, me carrying her Gravol IV pump, and the PICC line tubing exposed on her arm - the woman behind the counter didn’t know where to look, her eyes darting around, until she decided that the safest thing was to only look at me, eye to eye. She couldn’t look at Jan. Even though we were the only people in the shop, she seemed in a hurry to complete the transaction and see us leave. Jan laughed about it, but it bothered me. It reminded me of the historical attitude toward leprosy victims in third world countries. Jan was still Jan, the same beautiful person, and she deserved to be treated with the same dignity and respect that she had previously experienced - it’s a shame that many people can’t see past the tubes and other support equipment and realize that the person they won’t look at could just as easily be them. When we arrived in Owen Sound the next week for the chemo session, they advised us that her blood work was marginal and wanted to cancel the session. My wife, in typical style, told them she hadn’t endured a one-hour car ride for nothing and insisted they give her the treatment. Reluctantly, they agreed. This time, the side effect of nausea was almost instantaneous, and within two days I had to call an ambulance to take her to the hospital - she was dehydrating rapidly, eating nothing, and too weak to walk to the car. She spent a week in hospital, on constant saline IV. For the first several hours, they ran a full liter per hour into her, slowly tapering off to 50 ml per hour by week‘s end. Because the dehydration had become such a problem, we asked if it was possible for us to administer a saline IV at home. They said yes, and would consider it. But considerable time would pass before we were given the go-ahead and supplies. We had now missed the third chemo treatment of the second cycle, and week four was the rest week. I was getting concerned over the missed treatments and also over the apparent side effects. So was Dr. Qawi. She suggested that the Sysplatin might be too harsh for Jan, although it had seemed best to be aggressive, and opted to use a milder drug, Carboplatin, in future cycles. Jan’s abdominal pain had been slowly increasing and the hydromorphone dose had been raised appropriately. Normally though, it seemed to be keeping her comfortable, but there were growing indications that the drug was affecting her thought processes, level of awareness, and her sleep pattern. In short, and not unexpectedly, she began to appear ‘drugged’. It wasn’t too serious yet, in mid-June, but by early July it would be. Similar to the two tumours previously identified on her back, two additional ones had now appeared on her sides and one was forming on her chest. They were painful to the touch and we were given a morphine-based cream to apply as needed. It was obvious that the cancer was spreading.
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