The next four days were a slow blurry nightmare. Auburn general like many hospitals has addressed its budget issues by forcing out its registered nurses in favor of less qualified medical professional assistants. For the patient, me, this meant I would see my nurse only to administer my IV meds. My vitals, checkups, and concerns were attended to largely by CNAs many of whom spoke little english or simply never returned with the items we needed. I slept fitfully from the pain meds, I would wake in sheet soaked with sweat and we would wait sometimes hours for the assistant to return with fresh ones which we changed ourselves. I was a mess of tubes with IVs in both arms and on occasion someone would misstep and tread on a line, yanking one of those needles out of my arms. Concerned with the clot in my lung, my doctors wanted blood samples every four hours. I had been pricked so often I would start to cry when I saw them coming; my veins were full of scabs and it usually took 2 to 3 attempts to make it in for a good draw.
My oncologist finally came to visit me and explained that the best thing for me was a series of injections of a drug called lovinox, beginning with two a day in the hospital and the remainder to be self administered in the belly once a day for 60 days. I shook my head and held tears back, my breath escalating as I started to panic. I told him there had to be another way, another treatment, and that under no uncertain terms would I be self administering injections. I have, from a young age, been deathly afraid of needles. I had come to terms with them to the best of my ability through the course of my illness, accepting them as a necessary evil to be dealt with, but the trauma of my most recent hospital experience had left me panicky and hysterical at the thought of injections, blood draws, and biopsies.
The oncologist left, unable to convince me and in his place a hospitalist, Dr. Wahlid Behnawa, returned a few hours later with a much different message. I was sleeping when he arrived and the loud, angry tone of his voice woke me. I squinted at the door, I didn't have my glasses. He looked short and dark with a beard and mustache, I couldn't really tell with my bad eye sight. He started in on me immediately and demanded to know why I refused to take the injections. He told me I was wasting everyone's time, including my own and asked my why I didn't just go home to die if I refused the recommendation off my doctors. I had to take the injections, he continued, there was no other treatment and i should feel lucky that I had that option available to me. Shocked as I was by this tirade I managed to rally and told him under no uncertain terms could he speak to me so, that beyond merely unprofessional what he was telling me was unethical and that he was bullying me. I threatened to report him for his behavior and asked him to leave the room. Furious, he advanced a few steps into the room and managed to spit out a response, so angry he missed a few words. He told me he was going to report me for refusing treatment and being hostile. He told me I was being contentious and had been bullying all of the nurses and CNAs, that they had all complained of my treatment , that he would have me removed from the hospital and refused treatment. With this last threat he finally spun on his heel and left the room, leaving me shocked and in tears. My mother was equally astounded by his treatment and had been left at a loss for words. It had been sudden and deeply unnecessarily aggressive.
I desperately wanted to leave the hospital. The most recent run in with the hospitalist had left me shaken and afraid. I wanted to go home, away from all the tubes, and needles, and horrible uncaring people. Unfortunately, if you leave a hospital once admitted you are refusing care. Should you refuse care the hospital reports this to you insurance which then refuses to pay the multi thousand dollar bill associated with an ER visit and hospital stay. As I refused to see Dr. Behnawa again a nurse negotiated a compromise. If I agreed to take 3-5 "bridge" shots of lovinox, the Doctors would agree to releases me providing I then undertook a regimen of warfarin, a blood thinning drug, for a 90 day stretch. With little other option I took the deal and shuddered my way through the first shot in my stomach, dulled by the morphine drip in my arm. When they finally snapped out the IV needles and removed all the tubes and lines I wanted to leap from the bed to the wheelchair; instead my parents helped pull me upright and held me as I tried to make it out of bed and limp the few steps to the chair. They wheeled me to the car and soon I was home. I hauled myself into bed and curled on my side. I had never been so grateful to be home.
My stay at the hospital combined with the damage done by the blood clot set me back nearly two weeks. I was weak and mostly unable to walk for longer than a moment or two, stand for a moment or two. There was still pain when I took a deep breath and I was always tired. I was concerned for my trip, afraid I would miss out on the majority of the experience while napping away the exhaustion that dogged me. I looked doubtfully at my calendar and wondered if I would be able to recover in time. Then that week I got the first of two phone calls that would render these concerns irrelevant. The first was my interventional radiologist. Her voice was quieter than usual, more hesitant. She told me that regrettably the procedures had not been as successful as we had hoped. She pointed out that things hadn't gotten worse but admitted that they had seen some additional growth in tumors they had hoped to eradicate completely. She apologized, softly, and then the line went dead.
I was shocked. I went about my business in a sort of blur. I told my parents, deadpan, and saw their faces drop. I struggled to wrap my mind around it. How could it have failed? I had been so sick for so long. What had all the pain been for if it had failed? I didn't have answers for these questions so i stayed where I was, head buried in that fog and went about my limited daily activity. The next day we reported at 1PM sharp to the warfarin clinic where they pricked my finger to determine the thinness of my blood. They told me I had reached therapeutic level (the thinness desired by the doctor) and I called both of my oncologists to give them the good news. The call came a few hours later. While the doctor was glad the blood level had reached therapeutic he was calling to inform me that at this present time he could not advise that it was safe for me to travel. Rather he was calling to inform me that my Italy trip was off. Between the threat of another blood clot somewhere above the atlantic and the necessity to get me going on a new treatment in light of the failure of my TACE treatments there was just really no time to fit in the dream that had kept me going through seizures, and chronic vomiting, through the never-ending abdominal pain and hospital stays.
This news broke me. I hit rock bottom and for days had no desire to see, hear, or interact with anyone or do anything. I sat alone in my dark room and death sat in the corner, waiting, always waiting. I didn't mind him there: he didn't ask questions and he didn't want to help. In those few days I cried all of the tears I had saved up through the past year and a half of fear and uncertainty. I cried an ocean, built of river of bitter tears for a dream that was all I had left of a life and a future. The sun shone outside and the flowers were magnificent. I sat alone in a gold green paradise and wondered if I'd ever see another summer. My loved ones orbited around me, unsure what to say or do; I was fragile as glass. Their patient love and gentle attention found its way to me through cracks in those dark walls so that I could see that sun shining outside, if only a glimpse.
You can't always get what you want.
Yesterday I started a new treatment. My doctor says immunotherapy is the way of the future and thinks that this drug, yurevoy, is our one best chance at systemic success in eradicating my cancer.
But if you try sometimes, you just might get what you need.
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