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 January 2008 Post Book Essays "Rounds Two and Three, a First CT, and a Child's Wisdom" - Saturday, January 12, 2008 "Steve's Medical Adventures" - Friday, January 11, 2008 "Fence-sitting Days" - Thursday, January 10, 2008 "Time to Catch You Up" - Monday, January 7, 2008 "Rounds Two and Three, a First CT, and a Child's Wisdom" - Saturday, January 12, 2008 I had my second round of NK-012 on December 4. I was beginning to get stronger. This time, we only had to stay in Nashville two days. My weight loss had stopped and I was tipping the scales at an even 145. My appetite was still poor, but Steve nagged me through the days, pushing Carnation Instant Breakfast on me when I just couldn't stomach Ensure or any of the other dense, vitamin-y supplements. I began to see a pattern as to when and how I would experience side effects. Just like before, I had a dull, persistent headache for several days after the chemo. I had moderate nausea the first evening, this time with it manifesting itself just as my dinner was placed in front of me at Logan's Roadhouse in Nashville. Four days after chemo, I got flu-y and very fatigued. My hair also fell out. My hairdresser, whom I've followed from shop to shop since 1979, buzzed me off as close as she could emotionally stand. I looked like I had a summer, baseball team haircut. I knew that Steve would still need to shave me, but I just couldn't push her any harder to take me clear down to skin. Over the next three days, he finished the job. The week after my treatment, my white counts again bombed and I was put on Levaquin. I was also seriously anemic, but just above the threshold where Medicare will cover a shot to stimulate red blood cell production. I had diarrhea and the same crampy gut, but didn't know if it was from the chemo or the Levaquin. Thankfully, I didn't have to take any Levaquin the second week. I felt more resigned to riding out the days and the symptoms. My walks in the mall got easier. I'm usually a brisk walker, waiting for Steve who is a steady plodder (and could walk from here to California). Now my pace matched his, but it felt good to be able to walk a distance, even slowly. Since I had a biopsy in July, I've had a nasty, ulcerated place over my breastbone, right where my cancer first appeared back in 1994. When I first got home from the hospital, the place was ugly. I really thought that it probably needed to be debrided, to have the yucky places taken off, but I was afraid that I'd end up needing a skin graft. During the second round of my chemo, the ickiness began to dry up and the redness to fade to pink. Hmmm! Could the chemo be working? I had an interesting talk with my four-and-a-half-year-old granddaughter, Naomi, during this time. She was in my bedroom one evening when I was changing into my nightgown. She's seen me many times and had been curious about my new scars, but how I look is just how I look to her. When I was a child, my mother's brother, Russ, had facial scars from a shrapnel wound he got in World War II. I never thought anything about how he looked, although he was self-conscious about it. He was just Uncle Russ to me. I think that's how Naomi sees me, her nanny. I'm just how I am. She was interested in my recent hair loss. As she surveyed my nakedness, she asked, "Nanny, how come you don't have much hair on your privacy any more?" How's that for childish frankness!? I explained that the strong medicine that made the hair on my head fall out was also making my other body hair fall out. I also said some of it was because I was getting to be an old lady. She was quiet for a few minutes. "I don't want you to get old, Nanny. Then you'll die." I answered her. "It's true that when people get old, finally they die. But I'm not real old yet." "Nanny," she said. "Some people want to go to heaven and some people don't." I asked her to tell me more about what she was thinking. She said, "Sometimes I wish you could go be with Jesus so you don't have to be so sick any more." She looked at me quickly, as though to be sure it was OK to have said such a thing. "But I really don't want you to go because I would miss you." I hugged her. "Naomi, sometimes I have felt so bad that I've thought about that, too. But then I think about how much I love everything here, too. Maybe that's what you mean when you say that some people want to go to heaven and some don't. Is it?" She nodded. "Honey, even when people go on to heaven, they're still very close by. And we remember them a lot and that makes them feel close, too." She smiled. "Like Lizzy," she said, remembering our family dog, who died a year ago. "I still miss her." "Me, too, but it's nice to remember her, too, isn't it? And we know she's not sick and hurting any more." We both were quiet for a while. "Naomi, I don't think you're going to have to worry about me dying for a while. I'm doing so much better now." She smiled and hugged me and suddenly I found myself believing it, too. When I got my CT results the day after Christmas, we found that NK-012 is working! For the first time in over a year, the area under my breastbone showed no growth. Even better, lymph nodes in my liver and other parts of my chest were smaller by as much as one third to one half! It was sure easier to take the next cycle of the drug that day. Round three of the drug has been tough, even at a smaller dose, with more lower GI stuff. But I keep my mind on those positive CT results. Maybe I'll get more good news on the next scans, at the beginning of February. In the meantime, we're savoring the first good news in more a year and my certain belief that I'll go when God calls but I guess that, despite some serious "fire drills," that time hasn't yet come. I pray for discernment as to what to do with
the incredible grace of this time.
"Steve's Medical Adventures" - Friday, January 11, 2008 Something happened right after Thanksgiving that shook me up thoroughly and reminded me of my comparatively helpless state. Steve got a stomach virus and was ill for a few days. I wasn't able to be much help but did what I could. One evening about two days into his nausea and diarrhea, when we were here by ourselves, I was watching TV in the living room. He had been resting in our bedroom and came down the hall to the bathroom. I heard a big crash. I called his name and got no response. I walked to the bathroom as quickly as I could and found him sprawled backward across the commode and the edge of the bathtub, out cold. I realized that I couldn't move him or do CPR if I needed to. He was breathing but was unresponsive. I was sure that he had suffered a heart attack or a stroke. I called 911 and the dispatcher, bless him, calmed me down and talked me through, as they sent an ambulance. Hollin arrived home just as the ambulance pulled up. She ran into the house, white as a sheet. By now, Steve had come around and was vomiting and vomiting. The EMT's got him onto a stretcher, I called his daughter Laura and told her to meet him at the nearest local ER, and he was taken into the ambulance. The ambulance was out front for quite a while, while the EMT's started an IV and made sure Steve wasn't having a heart attack. Finally, they pulled away and headed toward the hospital. I felt so totally helpless. I couldn't go with him. I was too weak myself. Hollin reminded me that even if I hadn't been ill, upon finding him passed out all I could have done was exactly what I had done, and that was to call 911. She stayed up with me until I had come down enough to go to bed and then slept with me, the phone between us. Laura kept us frequently updated on what was going on. Steve spent the night in the ER, had a CT scan, and got IV's and Phenergan. The doctors ruled out heart attack, stroke and gall bladder problems. I felt so sorry for him, thinking of him having to drink CT contrast when he was so nauseated. He eventually was stable and the doctors attributed the symptoms to a severe GI virus. Laura brought him home around 5 a.m. It had been a scary, scary episode, but it reminded me that these events are also part of being an aging couple, cancer or not. I was also aware of how totally exhausted Steve was from weeks of caring for me, in and out of the hospital. The toll on caregivers is serious. He had been lax about taking his own prescription meds for well over a month, was eating poorly, resting even more poorly, and pushing too hard. This was a wake-up call for him, too, about the need to stay strong for himself, as well as for me. He had left the house on the stretcher in a sports shirt, boxer shorts, and a pair of socks. When Laura called to say that she was bringing him home, I asked what he was wearing. She said, "Just what he had on when he came, plus my jacket over his lap." It was cold! I asked her if he was covered enough. With typical Hampton humor she answered, "Well, we're not going to stop by Wal-Mart on the way home, but he's covered enough for the ride home." I was so happy to see him walk in shakily
in his ensemble as he came to bed a little while later. So grateful.
So happy to see him.
"Fence-sitting Days" - Thursday, January 10, 2008 The early days home after my stay in the hospital were very tough for me. I came home on November 8 and then returned to Nashville the evening of November 11, to undergo CT scans on the 12th and then to begin a new clinical trial on the 13th. While the days home with family were wonderful, returning to Nashville was daunting to me. I really didn't want to go back there at all. The CT scan on Monday, the 12th, showed progression of the cancer, not surprisingly. I also was sent to radiology to check my Port-a-cath. In the hospital, we had been able to administer drugs through it, but could not get a blood return. When I was checked out again, the whole damned thing had quit on me. No fluid or contrast would pass beyond the round diaphragm just under the skin. Apparently, the tip of the catheter was blocked, perhaps damaged during the insertion of my stents, back in September. The prospect of having to postpone chemo or have a new port put in just about sent me over the edge. I just couldn't face one more surgery. We went back to Dr. Burris's office and explained the situation then just went on to Hope Lodge. I got a phone call there a little while later. Dr. Burris's office offered to put in a PIC line, a peripheral central line from my arm back up into the subclavian vein. I just couldn't face another procedure. I wasn't ready to have to undertake the extra wound care it would entail. I didn't want to be messed with. All I wanted to do was sleep and forget it all. I did have the presence of mind to say, "Surely, not all of your patients have central lines. Couldn't we just do this with a regular peripheral IV?" The nurses conferred and decided that they could start two IV's in my left arm: one for the drug and one to draw the bloods required for the pharmacokinetics portion of the study. So, on schedule, on Tuesday, November 13, I got my first dose of NK-012. It is pumped in fast, 250 cc's in exactly 30 minutes. I sat listening to the steady "shuk, shuk, shuk, shuk" of the IV pump. Blood work, EKG's, and collecting every drop of urine I passed occupied the rest of the day. We were sent back to Hope Lodge with a cooler on wheels with ice packs and an amber 24-hour urine specimen bottle. We wheeled our little "pee-wagon" out to the car and carried with us to restaurants and bookstores for the next two days. Finally, after blood work on Thursday, the 15th, I was able to return to Chattanooga. I was so exhausted and still so weak, just one week out of the hospital. I was still using a wheelchair and walker. My appetite was terrible. I was depressed and anxious. On returning home, I got some of the side effects the informed consent had described. I had a dull headache, felt flu-y, and developed loose stools and a crampy gut. I just felt awful. I felt so ambivalent about taking the chemo. I felt even more ambivalent about even being alive, wondering how I was going to muster focus and determination to get through the days. Why hadn't they just let me die when I was so close? What would the coming days hold? Would I just be more and more dependent? Would I ever be strong enough to drive again? When might I be able to do without the walker? Would anything ever taste good to me again? Reading, my usual escape and nurturance, didn't even appeal to me. I felt so disconnected from myself, my family, from life. Steve and Hollin watched me, helplessly. To their eyes, I was so vastly improved over how I had been most of the time in the hospital. It was excruciating and baffling to them to watch me as I sat on the fence, undecided as to whether I really wanted to go on at all. Finally, one night, Steve and I had a tearful and heated discussion. I cried and cried for how sick I had been, how little I remembered, how scared I was, how awful I felt. He cried and said, "You've got to make a decision and commit to it, even if you change your mind later. This vacillating is eating you alive. If you are going to take the chemo, then do everything you can to get strong. Eat, walk, and put your heart into it. If you don't want to, then let's do what we have to do to make you comfortable and to make your days better. You can't go on like this." Hollin gave me a similar talking-to. Both she and Steve were honest about what they hoped my decision would be, but I also truly felt their respect and acceptance of the possibility that I was just plain done with treatment. My white counts tanked rapidly to an alarming level. If I had been on conventional chemo, I know I would have gotten Neupogen to rev up my white cell production. Since I was in a trial, the approach was a cautious watch-and-wait. I was put on Levaquin, a strong antibiotic, as a preventive measure and took that for two weeks. My counts stayed low, as the nurses had predicted, but were back within normal range when it came time for the second treatment (also as they had predicted). During this time, I started using a small dose of Ativan for nausea and to take the edge off my anxiety. It made a huge difference in my ability to cope and ride out the days, not knowing if feeling lousy was the chemo or the Levaquin. I don't know that I made an active decision during that time about committing to the chemo, but as the anxiety waned, I got through the days more easily and the feeling that I needed to make a decision also diminished. Progress in my physical strength helped, too, with my rarely using the walker and beginning to shuffle around the mall to build up my stamina. I was able to take a shower by myself. I read an Irma Bombeck book then decided I was ready to tackle something meatier, and did. I began to write a little bit, the sketchy blog entries of November and early December. My appetite was still not great, but I stopped losing weight and leveled out. Best of all, the scared look around my eyes
began to disappear. I may still have been standing next to that
fence, but I wasn't straddling it any more.
"Time to Catch You Up" - Monday, January 7, 2008 I recently composed a holiday newsletter for friends and family, to bring them up to date on all our family's news and medical adventures since mid-September. It was a two-sider and since I got through that, I figured that I could do a more official blog posting than I have provided in the past two and a half months. Thank you all for your patience and your concern and willingness to take the scraps of information I've posted as I've had the energy to do it. I hope that this will fill in the blanks and provide a springboard for more detail about the past several months and more regular and meaty reflections and news. When I last did a substantial piece of writing in mid-October, I was experiencing a lot of pain and the recurrence of fluid in the right side of my chest, crowding the right lung and making breathing difficult. Several weeks earlier, I had stents placed in the vena cava and the blood vessels branching off it, to relieve pressure caused by my tumors, which were producing back-up of fluids and swelling in my face, neck, chest and upper arms. Our main goal was to get me well enough and keep me well enough long enough to get started on a new clinical trial at Sarah Cannon Research Institute in Nashville. I knew that I was in a situation that couldn't sustain life for long. Attacking the cancer was the only real hope. The fluid on the right lung was accumulating at an alarming rate. If 1000 cc of fluid was drained off one day, by the next day another 500 800 cc was back again. We traveled to Nashville on October 21st, expecting to see the oncologist there on the 22nd and begin chemo on the 23rd. What ensued instead was a rapid series of downturns in my overall health that quickly put me in critical condition. I saw my Nashville oncologist Monday the 22nd, had more fluid drawn off the right lung and anticipated starting chemo the next day. That night, however, I began to have unbearable pain in the chest. I tried managing it with my prescribed pain meds, but got little relief. At one point, around 3:00 in the morning as we were up in our room at Hope Lodge trying to get through until morning, Steve began calling family and friends back in Chattanooga, asking for prayers. About an hour later, I was admitted to the hospital in Nashville and within a day was in the ICU, with fluid in the sack that surrounds the heart and the fluid on my right lung compounding the respiratory and cardiac problems. I was gravely ill and things looked grim for several weeks. Apparently, life hung by a thread for days. Mercifully, I have very little recollection of this. As Steve has recounted it all to me, images come back, but I couldn't have reconstructed much of it without his telling of the events. During this time, Steve was present nearly every minute. He was nurse, advocate, and comforter. Hollin traveled to Nashville on all her days off. Steve's children, Laura and Chris, and their spouses traveled back and forth, too. Other close friends, both in Nashville and Chattanooga, came and offered support, respite, and prayers. Around the world, prayers were added by our Baha'i family and by people of all faiths. The fluid around my heart was beginning to seriously compromise its ability to beat, so I underwent a procedure that cut a small window in the pericardial sack, to evacuate the fluid there and relieve the pressure on the heart. I had a chest tube placed on the right side to drain the rapidly accumulating fluid and ultimately underwent a procedure in which an irritant was introduced into the chest cavity on that side to cause the lung to adhere to the lining of the lung cavity in order to eliminate the space in which the fluid was accumulating. I was in a great deal of pain during this time and was a bit out of my head, too. Family and friends can still report crazy, sometimes funny, things I said that I have no recollection of. One bizarre example my daughter reports includes a reference Steve's respiratory medicine, Spiriva. Apparently, in a perfect Russian accent I once told him, "Why don't you take a hit of your Spiriva and go play dominoes with the other Russian men on the porch?" Because I was pulled straight off Oxycontin and Lyrica cold turkey (which I had been taking for months under the care of a pain management specialist), I got psychotic quickly in the ICU, which made my care difficult for everyone and frightening for family. I remember being afraid that the doctors were trying to kill me. The longing for my mother that was born on our camping trip a week or two earlier was in full bloom, with my calling for her over and over. Slowly, I pulled out of the crisis. I was transferred back to a regular room on November 1. Nineteen days in the hospital, most of it in bed, weakened me completely. I had to learn to walk again and feed myself again. I was still so swollen from all the drugs I had received in the ICU I couldn't even hold silverware. My fingers were like sausages. I came home November 8, using a wheelchair and walker and still very dependent for physical care. This brief time at home was an important psychological boost to sleep in my own bed and eat home cooking and be with family, even if only for three days, before returning to Nashville to start chemo. The drive home was grueling. I had not ever
sat up for more than an hour and the time in the car, with stops,
was over four hours. I had to use a wheelchair for going any
distances. Steve came in and out of ladies' rooms with me to
help me transfer to the commode and back. My appetite had been
poor and I was sick of hospital food. Steve asked me where I
wanted to eat as we arrived in Chattanooga. Impulsively, I said,
"What I'm really hungry for is Indian food something
with some taste!" He laughed and shook his head and took
me to our favorite Indian restaurant, India Mahal, pulling my
wheelchair up to a table and watching me eat my favorite things,
even if only in small portions. It never tasted better! Between October 21 and November 13, I lost 25 pounds. I was also anxious and agitated after all that had transpired in the hospital, discouraged at being so debilitated. Frankly, there were times I wept and sincerely wondered if it might not have been better just to have died during that time in the ICU. I found it hard to commit psychologically to the demands of the chemo and had absolutely no physical or emotional reserves to call upon. It was a difficult couple of weeks for everyone. For my family, who had seen me literally at death's door, my vacillation about going on was especially painful. To their eyes, I was vastly improved. For me, with no knowledge of how ill I had been at my worst, I could only base my perceptions on how weak and sick I felt at that moment. It would take weeks to come back into any kind of balance.
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