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 September 2007 Post Book Essays "We're not in Kansas any more." Part I, Saturday,September 22, 2007 "We're not in Kansas any more." Part II, Sunday, September 23, 2007 "Shifting Sands and Terra Firma" - Tuesday, September 25, 2007 "Days with Doodle" - Friday, September 14, 2007 "The Long Haul" - Saturday, September 8, 2007 "Against the Wall" Friday, September 7, 2007 "Been Down So Long, It Looks Like Up to Me" - Thursday, September 6, 2007 "The Doodle Chronicles" - Tuesday, September 4, 2007 "We're not in Kansas any more." Part I, Saturday,September 22, 2007 Oh, what a week we've had. Over the past several weeks, I had begun to notice that when I awoke in the morning, my left eye was puffy. I put this down to my maternal heritage of bags under the eyes, thinking, Well, they're finally emerging. Then, when it was a little more noticeable and lasted well into the afternoon I thought, It must be because I have to sleep on my left side, to keep from putting pressure on the nerves over my right ribs that give me pain. Last weekend, however, I began to develop swelling of my face. As Monday rolled around, I noticed that my neck was swollen and the veins in my upper chest and upper arms began to stick out as well. I called my local oncologist, Dr. Johnson, to make an appointment for Tuesday. I expected that the main purpose of the visit would be to talk over the clinical trial possibility in Nashville and his consultation with my Nashville onc. I would certainly ask him about the swelling and let him know that I was developing quite a snore. Steve and I set off in separate cars, each with one of our grandchildren, I with stroller in tow, to meet at the doctor's for what we thought would be about a 45-minute time period, start to finish. When Dr. Johnson entered the room, stepping around the stroller with the baby and greeted brightly by our four-year-old granddaughter, who was playing her Pixter, the world began to turn upside down. The wind picked up, the tornado bore down, and within a matter of hours, my whole reality was about to change. The land we had seen and known of on the horizon was about to become the place our feet are now set. Dr. Johnson was alarmed about the swelling. He ordered a stat CT scan and a dye study to be sure that there wasn't a clot around my port-a-cath. Not expecting that I would have to undergo any tests, I had eaten a few potato chips as I drove toward the doctor's. This meant that I'd have to wait a few hours before I could get the CT done. There was the possibility that I might have to be admitted to the hospital. We'd have to wait to see the CT results. Steve and I scrambled around, feeding the baby and keeping Naomi occupied while the scheduler at Dr. Johnson's persisted in trying to get me worked in for a late afternoon CT. We had two cars, two kids, and plenty of uncertainty. Steve is such a trooper. He went out to the parking lot, moved the booster seat into my car next to the baby seat and took the kids home, leaving his car for me. I would call him after the CT to let him know the results and what the plan would be. The nurses and Dr. Johnson and everyone at his office, from the schedulers to the lab techs to the medical assistants, were so kind and supportive. It took long enough to get a slot to do the CT that I didn't have too long to wait before I could go over to the outpatient area and get processed in. I had my paperwork and orders clutched in my hand and made the long walk from one end of the hospital to the other. It was slow going. I was short of breath if I sped up too much. I got the CT done and then a radiologist injected some dye into my port to see if there was clotting anywhere. Then I made the long walk back to Dr. Johnson's office, to wait for the tests to be read and the results to be phoned to him. It was close to five o'clock when Dr. Johnson called me into an exam room. "Debbi, it's not good." The good news was that my port-a-cath was not clotted. That was the only piece of good news. The rest of the news was that my cancerous lymph nodes have wrapped themselves around my superior vena cava, the big blood vessel that returns blood to the heart, and around the innominate veins that branch off it. These are the vessels that drain the blood returning from the brain, head, face, neck and arms. That mechanical blockage explained the swelling. It also looked as though there might be some clotting along that route, just from the blood flow being slowed and getting sludgy. Dr. Johnson had talked to Dr. Burris. The option of Alimta was not encouraging. It didn't show enough advantage in breast cancer ever to get out of a Phase I trial. Methotrexate was iffy. The new trial I've been looking at in Nashville looks like the best treatment bet. But this current crisis was the most pressing. Dr. Johnson had spoken with an interventional radiologist, the kind that does therapeutic procedures under X-ray or imaged guidance. Interventional radiologists are the ones, for example, who do cardiac catheterizations. The radiologist felt that he could probably place stents inside my vena cava and the two other blocked veins, to open up the blood flow again and relieve the pressure exerted by the tumors. If there were clots, he could also use a clot-busting drug to break down the clot, like they do for heart attacks and strokes caused by a clot. This was all very sobering news. It was just Dr. Johnson and me. I looked at him, teary, and said, "OK, Dr. Johnson. It's just the two of us. Where are we in all of this?" "I'm going to contact Dr. Kimsey (my radiation oncologist) to get his opinions about any more radiation, but I doubt you can have any more to your chest. Debbi, we're just about out of drug options. We need to take care of this problem and will get you scheduled first thing tomorrow for the stents. I'll give you some Heparin to keep your blood from clotting so easily before you leave tonight. But we're coming to the end of the list." We were both quiet for a while. I was crying quietly. "Do you think it's time to quit?" I asked. "I think that the trial in Nashville is a viable option. Your heart is strong, your kidneys are perfect and, despite the progression of the cancer in your liver, it's still functioning normally. I'd hate to waste a good body!" He smiled gently. "It's up to you, too. You have had a desire to try to find something to manage your illness and to advance science. If you still want that, I'm still in it with you on the treatment end, too." "I think I do want to go on. I have things I want to do, Darrell. I have a lot to live for. For one thing, I want the book to do its work and I want to be there to help that along, if I can. But I need to know that you'll also tell me when you think it's enough. I don't want to be referred to hospice too late to get its benefits to me and to my family as we face this." "I promise that I'll tell you. But it will always still be your call." Again, we were quiet together for a little while. I went on, "I just want to know that this is an open and ongoing conversation." "Absolutely," he answered. We hugged good-bye and he said that he'd see me sometime the next day. And I made the long drive home.
"We're not in Kansas any more." Part II, Sunday, September 23, 2007 I drove home from the oncologist's, my bad news all over me. I felt awful physically and was raw with the news that the tumor growth had started blocking off my vena cava. What I dreaded the most was sharing this news with Steve and Hollin, as well as my step-kids, Laura and Chris. I told Steve the news and the plan to get stents put in the next day. I could see that he was shook, but very focused on just getting the immediate problem solved and moving on to the trial in Nashville as soon as possible. Hollin questioned me more closely about what all this meant long-term. The evening was full of tears and talk and more tears and talk. I know that neither Steve nor Hollin slept much that night. I had used some Lunesta and slept deeply. The next morning, I had a call from Dr. Johnson's office around 8:40 a.m. "We've got a room for you. Whenever you can get yourself down to admitting, they'll get you settled and let you know what the schedule is for the stents." I looked around the house, my messy, disorganized house. I thought of the bookkeeping I have yet to do for Steve's business and for the activity on my book. I looked at the stacks of filing and the pictures not in photo albums and the mess in the garage and the dog who is still not yet fully housebroken. I thought of the deadline for the newsletter of our Baha'i community that I do. And I knew I just had to turn loose of all of it. I showed Steve once again where insurance policies and wills and power of attorney are in our family file cabinet. I kissed Hollin and the babies goodbye and we got in the car, my backpack in the back seat with the advance health care directive in it, a bathrobe, The Life of Pi, and my toothbrush. I was admitted to the cardiac "short-stay" unit, where folks undergoing cardiac catheterizations and stents are. I was grateful to be on a unit where the nurses are accustomed to people having these kinds of procedures. Steve was a nervous wreck, a combination of sleep deprivation, little food, and stress. Although we didn't speak directly of it, we knew that there was risk to the procedure. I had chosen not to ask the bottom line question: "What if the doctor is unable to get stents in?" I was feeling worse. I had a headache. I was having more trouble breathing. I was swollen like a pumpkin. I knew that I was seriously sick, maybe life-threateningly sick. Steve's daughter Laura came over to lend her support and soon Hollin arrived, too. I had the stent procedure around 1:30. They gave me Versed and Fentenyl, a combination often used to reduce the discomfort and memory of a colonoscopy. I have no memory of the colonoscopy I had several years ago and expected to have the same experience. Perhaps because I have been on narcotics all summer to control the nerve pain in my chest wall, I never really went under. It did take the edge off my anxiety. I lost a strict sense of the passage of time. The nurses, techs, and Dr. Bisese talked to me throughout the time. Sometimes, Dr. Bisese asked me to hold my breath. It seemed strange to think that a catheter was passing up through my heart on the way to the problem area. Finally, he had placed the stents. He also mentioned that I had some fluid on my right lung and that he would contact Dr. Johnson to see if he wanted him to draw it off before I went home. The good news was that there was no evidence of a clot anywhere, so I didn't have to have clot busters or go to the ICU. I was rolled back over to the cardiac unit. I had to lie flat on my back and not move until almost 9 p.m. I began to get a horrendous headache. Hollin, Laura, and my grandson Colby kept me company while our son Chris took his stressed out dad away from the hospital for dinner and a movie. When Steve returned and after I had been able finally to get out of bed, my headache worsened and I had terrible nausea and some vomiting. Zofran and Tylenol finally got that under control and I slept fitfully. The next morning, Dr. Johnson came in early and he and Steve and I talked again about where we are. He was so tender with us, so kind and present. He was glad to know that the stents were in and my jaw line was becoming visible again as the swelling began to recede. He talked with us again about the clinical trial in Nashville and the fact that we are otherwise out of options. I talked with him about how I had never imagined that this might be the way I died. I told him frankly that a code on the table during the stent procedure might not have been so bad. I asked him why I couldn't just have rapid liver failure. I'm looking for a gentle road and I'm not seeing one. He was so understanding and supportive. He hugged us and we agreed that we would take it all one day at a time and one decision at a time. I went for a thoracentesis to draw off the fluid from around my right lung. I was nervous about the procedure, having assisted with them years ago as a nurse. It looks gruesome, but the actual procedure wasn't too bad, with a little pain, but nothing sustained. While I thought I had a little fluid, in fact there was 48 oz., nearly three quarters of a two-liter soda bottle. I was stunned! I knew I had gotten more short of breath and tired, but I had just attributed it to being out of shape. No wonder I had to rest so many times when trying to vacuum the house a few days before. We don't yet know if the fluid is from tumor or because of the back-up caused by the blockage before the stents were placed. We'll know this coming week. Next, I went for an MRI of my brain. The severe headaches couldn't be ignored. By this time, I was feeling so sick, so discouraged, so exhausted. I said to Steve, "If this is what life is going to be like, maybe I'm done." His eyes filled with tears. "I know, darlin'. I want to ask you not to make any decisions while you're still in the hospital. Give yourself a few days to see if these procedures make you feel better. You can still make that call, but give it a day or two." The MRI of the brain was crucial because it would determine if I would be excluded from a clinical trial option. Phase I clinical trials have pretty loose exclusion criteria, but most say no to brain metastases. Late in the afternoon, after all the procedures, we went home. I felt like I had been jerked through a knothole. I just rested all evening. The next morning we saw my radiation oncologist, Frank Kimsey. Not surprisingly, he told us that there was no way he could do any more radiation to the chest. I had exceeded that lifetime maximum to that area. He, too, was so loving and concerned. He had tried to get over to see me while I was still an in-patient, but had been too busy. He said that he was actually glad that he had overnight to think and pray over me. I was so touched. He did have the results of the brain MRI: negative for brain mets. By Friday afternoon, I was still just spent, but got on the phone and called Nashville to ask the research nurse to reschedule all my scans and appointments with Dr. Burris. I'm not through yet. Maybe the drug there can help. If not, I won't be much worse off physically or emotionally than I was this past week. The territory will feel familiar. We'll be settled in this new land. I'll walk toward its borders when the time comes.
"Shifting Sands and Terra Firma" - Tuesday, September 25, 2007 My health crisis last week stirred me up, body and soul. I faced the real possibility of death and was flung into territory I had previously only imagined. Once the crisis passed, I've discovered that I'm shipwrecked on that island. To say that this has been a week of adjustments is almost a laughable understatement. Despite the emotional turmoil of those adjustments, I'm once again struck by the resilience of the spirit and the persistence of hope. I'm also well aware of the riptide of "normal life" that keeps sucking the sand from under my feet as I try to become firmly set where I am, getting my bearings. Six days ago, I lay in my little cubicle in the cardiac care unit, waiting to have stents put into my vena cava and the big veins that go off it, which were being squeezed and obstructed by the cancer. There was lots going on around me, but despite all the background noise, I had plenty to think about. I really wasn't sure I'd make it through the procedure to place the stents. If the doctor had been unable to get the stents in, I knew we didn't have any options. Chest surgery was out of the question. I've been irradiated there enough times that my skin is thin, the underlying tissue fibrous, the blood supply poor. The small wound from a dinky little punch biopsy over my sternum that I had in July still hasn't healed. I knew that a third round of radiation therapy was unlikely, too. The only chemo I could get on was a clinical trial 130 miles away and impossible to start before October 5 at the very earliest, 28 days after I stopped taking my last clinical trial drug. For all my brave talk about surrender and contentment and acceptance, how was I going to do now that I was really facing death? I was surely aware that so much of my working it through had been important and helpful and a good preparation, but somewhat in the abstract, with that destination in the distance. Now I found that I might be on an express train toward my passing. I was scared. I was focused. I was full of thoughts and feelings and reflections and worries and regrets. Sometime during that period on the stretcher, I thought, "If I've got maybe hours to live, is this how I want to spend my time, thinking about all the things I didn't get done?" The word "no" rang through me, reverberating in every cell. When I had left home that morning, I was well aware of all that was left undone. I had physically walked away from it, but I surely had not detached from it. As I lay there in the hospital, I remembered something Steve and I had talked about when we were going through our own personal hell during the time of our divorces. We weren't sure if grace or fate or happenstance would ever bring us together. Once we had asked ourselves a question: "If we knew we only had a half hour left to live, how would we spend it?" We reviewed many choices but the final one we came to in full agreement was that we would spend it remembering the good things. So, every time that I had a thought about what I wished I might have done or should have done, I replaced it with a memory or reflection on something from this amazing life I've had, some thankfulness for a blessing or an opportunity or a friend or a moment. The uncertainty and the imminence of death lapping around our knees like lava made it hard to sustain, but I slogged back to it again and again. It was hard going, but it helped calm and center me. The question of how to detach from "woulda, coulda, shoulda" has been my challenge ever since. I'm finding that perhaps it's going to be my work on this side of the threshold that I crossed last week. I think about Steve, my dearest companion. I think he kind of lost his virginity last week in terms of his innocent belief that a magic bullet is out there that will just cure me and we'll be done with all of this. I hope and believe that what he is left with is faith and certitude that God is able, but that this means that we'll be given strength and guides and helpers for whatever miles and trials lie ahead. I think about Hollin, my sweet daughter who has lived more than half her life with the uncertainty of my illness, since she was ten years old. From the time she was a little child, she has always been very insightful about things going on inside herself and around her. She's very frank, which I also treasure. As we sat at the hospital, just the two of us after the stent procedure, we were talking. She said, "You know, Mom, I just have to say that sometimes I think it might be easier to be one of those kids whose parents get sick and are gone in six or eight months. We just keep doing this over and over." I agreed with her. I said, "I know, honey. We keep walking up to the edge of the cliff again and again and the ground crumbles away under our feet a little more each time. I know that this has been so hard on you." She acknowledged that this episode had hit her hard emotionally, with the reality of how sick I am becoming. So, since the stents are in, my status has stabilized, and I'm now tentatively scheduled to start my trial on October 22, I've got a couple weeks to dig my feet into the sand of this new place and get my land legs back on terra firma. I have to resist the pull to step back into the level of "busy-ness" (fulfilling as it has been) that I have tried to sustain. My strength has been slow to return. I've decided that I want to put everything through the filter of "where do I really want to spend my even-more-limited energy, and possibly my seriously rationed time?" I'm going to be a bit of a martinet as I try to adhere to this discipline. I need to be a hard-liner most of all with myself. I don't want to miss a single opportunity to do wonderful things, but the truth is that I don't have the energy any more for every single wonderful thing that comes my way. I have to give up the edge of desperation that has sometimes driven me to do things beyond my level of fatigue or illness, out of not wanting to waste a minute. I'm resolved to spend these days doing the things that mean absolutely the most to me. I'm pledging to myself not to get dragged down by regrets or the allure of "if only." I'm going to take time every day to remember and savor every sweet memory I can conjure up. I'm going to be deliberate about making more great memories. I'm going to explore the shoreline of this
new land and not squander my time scanning the horizon for a
rescue ship. I would miss all that's happening here and now,
right where I am. I'm planting my feet on solid ground.
"Days with Doodle" - Friday, September 14, 2007 Right after Labor Day, my daughter took a new job, working a kind of mid-day, almost-second shift for a local urgent care "doc-in-a-box." As she made this change to try not to have two children in daycare, Steve and I made the commitment to care for four-year-old Naomi and three-month-old Lindi four of the five workdays in a week. The fifth day of the week, Hollin and Rodney will employ a college student who is a friend of our family's. Even before the baby arrived in early June, Hollin was spending nearly half of her income on daycare. Adding the cost of infant care was prohibitive. Young families in which both parents have to work face such challenges. We knew that this was going to be a big adjustment for all of us, but given the costs of daycare for a four-year-old and an infant, it was the logical thing to do. Naomi has gone off to work with her Peepaw almost every day. She takes her well-stocked lunchbox and hollers over her shoulder, "Bye, Nanny!" as she heads out the door with Steve. He works in our son's eBay store, doing packing and shipping. It has become a classroom for Naomi for measuring, beginning to learn her letters from labels saying things like "Fragile," and exchanging thoughts with her grandfather throughout the day. The first day, Steve brought her in through the back door, directly into the shipping area, which is strewn with odds and ends of cardboard, boxes of all sizes, Styrofoam pieces, and packing peanuts. He still laughs to recount her first reaction. She grabbed her cheeks and exclaimed, "Oh, my God! What happened?" When Steve and Naomi leave for work around
10:30 each morning, my day begins with three-month-old Lindi
(whose daddy has nicknamed "Doodle"). I had forgotten
how consuming a baby can be, and what a joyous preoccupation,
as well. The first week, I hardly got anything done. I'm doing
better balancing her care and daily chores now. Lindi is a sunny little thing, all smiles most of the time and very even-tempered. She cries rarely and then only for good reasons: a diaper that needs to be changed, sleepiness, or hunger. The only time she is insistent in her cries is when she is hungry. When she feels hunger, she seems to realize that she really wanted her bottle five minutes ago. Even the thirty seconds it might take for me to make the bottle or heat one up is just too, too long to wait. She lets me know her impatience with red-faced, energetic, high-decibel crying. She's a chubby little baby who is a good feeder.
This is an abiding pleasure for me. My Hollin had ten weeks as
a newborn of not taking the breast or a bottle well. I was nearly
frantic as she didn't gain and didn't gain. The pediatrician
and I worked and worked and worked to try to get her to imprint
well on something, anything! I pumped breast milk. We tried various
bottles and nipple shapes. We eye-droppered milk right into her
mouth, like a little baby bird, when she wouldn't suck well.
I used Oxytocin nasal spray to be sure my milk was letting down.
We walked the floors. I prayed and cried and worried. Finally,
the pediatrician struck upon an idea that did the trick. It was
a device called a "Lact-aid." The Lact-Aid is for re-lactation, for helping with feeding problems, and even for adoptive mothers who want a nursing relationship with their babies. It uses a little plastic bag that holds a few ounces of formula or breast milk and has a tiny, soft plastic tube that can lie right up next to the mother's nipple. When the baby nurses, she also draws milk from the Lact-aid's little bag. Twice the milk for the same effort! Hollin gained a pound and a half the first week we used it. It was a life-saver, possibly literally. She strengthened, became a good nurser, and stimulated my milk supply. I remember watching the dimples finally appear on her elbows. Lindi has been a good feeder from the first time she latched onto Hollin. She is plump in all the right places and in good proportion to her sweet little body. She is a cute baby. Sometimes she looks so much like my mother that it takes my breath away. Other times, I see her daddy so clearly in her, I wonder if any of the genes from my side of the family sneaked in there anywhere at all. She's very social. We "talk." Yesterday, I would start with a high pitch and slide it down, saying "Oooohhhhh!" She would look me right in the eye and do it back. We did this twice yesterday, maybe ten times in a row. It was a conversation. I think she's brilliant and destined for greatness, of course. I'm relearning about getting a few things done in small increments of time. I'm relearning lying down and resting when she is resting or sleeping. I am tired at the end of a day, but I know that I have given the limited energy I have to the best possible cause. We're taking this all a month at a time. I hope that we can continue to make this work. Lindi is my light right now. I am banking memories and expanding my capacity for gratitude. I'm also settling into the bone-deep happiness of just holding a baby whenever I want to. For more information about the Lact-aid Nursing
Trainer System, go to www.lact-aid.com
"What a Difference a Day Makes" - Wednesday, September 12, 2007 We've had a busy couple of days since our trip to Nashville, meeting with my oncologist there to let him know that I've decided to come off the clinical trial. Steve and I arose in the pre-dawn darkness and made our way up the Interstate, with the day breaking over my right shoulder as we drove northwest. We were watching that autumn angle to the sun beginning to arrive with more golden, penetrating light. I was feeling anxious and teary as we got closer to Nashville. At about Murfreesboro, about a half hour south of Nashville, Steve blurted out, "I hope that you're not letting anything at all keep you from considering the full range of possibilities, including whatever else Dr. Burris might have." I realized as he said it, that I was already using limitations and justifications in my own mind to restrict the choices. Steve's directness evaporated that for me and I told him that I would listen to whatever, but that I was so tired, I truly couldn't imagine anything other than coming home to Chattanooga for a while. The only thing that might alter my position would be if Dr. Burris strongly disagreed with Dr. Johnson's next couple of ideas for chemo. If there were a difference of opinion, I'd certainly want to hear all the thoughts on the subject. We pulled into the Sarah Cannon Research Institute parking lot about 20 minutes early. The butterflies were fluttering in my stomach. As I walked toward the doors, frankly I was thinking, Well, this is the last time I'm going in here, at least probably for a long time, unless I have to come back for some exit scans or something as I leave this trial. I wanted to be as strong and rational as possible. I would need to tell at least two and possibly as many as four people that I was done. It wouldn't do to fall apart. The nurse who takes the blood samples called me back to a chemo chair. I had my bloods drawn and then one of the oncology nurses came to talk to me. I managed to tell her my decision and the fact that I hadn't even taken last Friday's dose of the drug. She was carefully neutral as she listened to my decision and noted the side effects from last week. "We'll get you in a room to see Dr. Burris in a minute and I'll check to see what the protocol requires as you leave the study." As soon as she walked away, the tears swam to my eyes, right up to the edges. I was biting my lips and pressing under my nose to keep from just losing it. Too early to lose it! I began to feel like I was letting everybody down, including myself. Breathe, breathe, breathe. Finally, I climbed back on top of the feeling and smashed it down. We were shown to an exam room, to wait for Dr. Burris. The nurse said, "All I need to get is a couple more vials of blood and do an EKG to complete the things needed for you to come off study. After you see Dr. Burris, we can get that done." I had that achy, almost sneezy feeling at the back of the throat when the tears are gathering. It took a while, but Dr. Burris finally came in, my chart under his arm. As soon as I saw him, I started crying. "Dammit!" I wailed. "I was hoping I could keep from doing this so soon, so that I could talk to you more easily." He came over and hugged me. I blubbered, "I feel like I'm letting everybody down, but I just can't do this drug, Dr. Burris." "It's OK, Debbi. It's about your quality of life. If this drug is making you feel that awful, you don't have to take it." I wiped my nose on a piece of paper towel. "Thank you. I've just been doing this for so long. I so tired, Dr. Burris. I'm so tired." "I know you are," Dr. Burris said. "So talk to me." I told him about the side effects and my almost incapacitating aversion to swallowing those pills. I told him about the ideas Dr. Johnson had for using methotrexate again or maybe Alimta. I told him that Dr. Johnson wanted to know his opinions, too. "Well, Debbi, I'd like to tell you about something we're using now in metastatic breast cancer that is producing some encouraging results, especially in women who are not HER2 positive or not strongly positive. I don't, however, want you to feel any pressure about this." I told him that I wanted to be able to consider the best options and that I knew I needed to be in some kind of treatment soon. I'd hear him out. He told us about a research study that is being done in conjunction with a Japanese pharmaceutical company and Vanderbilt with a drug that has been used for several years in the US for colon cancer and more recently for lung, known as CPT-11 or Camptosar. I immediately remembered it as a drug a friend with colon cancer had taken before he eventually passed away. It wasn't an easy drug, but at this point, what is? Dr. Burris said that the studies here for Camptosar are testing different drug delivery systems, to try to reduce the side effects, increase its effectiveness, and sustain its effectiveness. In this study, the drug is encased in a liposome, a kind of fat bubble that helps it to deliver most of its effect right in the tumor, instead of wreaking havoc all along the way. I remembered that Adriamycin is now available in a liposome in a drug called Doxil. He said that in Japan, Camptosar is already approved for metastatic breast and ovarian cancer, as well as colon and lung. He told us that it is a topoisomerase I inhibitor, addressing a mechanism different from any chemo I've taken in the past. Some of the most common side effects are (surprise, surprise) diarrhea and low white cell counts. Then, he told us something really exciting.
On this study, there is a blood test that they can do to determine
if I am homozygous or heterozygous for a gene called UGT1A1.
The result of this blood test determines the size of the dose
a patient should get. If I'm heterozygous, I could probably tolerate
the whole dose. If I'm not, I should only take half the dose,
because people who are homozygous are highly sensitive to the
drug and therefore the potential toxicities, too. I looked at Steve and smiled. He couldn't hold back. "This sounds interesting and promising to me." I thought about how wonderful it could be to have a drug that might work and is different and new to my stubborn cancer cells. Beyond that, I was intrigued and excited about how revolutionary it would be if my participation could help advance gene testing used to determine dosage and possible increased toxicity reactions. If I could not only benefit from that but maybe help get that practice validated and offered as an example for other research, how could I not at least consider it? "I'm willing to look at it," I said. "Draw the blood today." Dear Dr. Skip Burris smiled. He is such a nice man. "I'll have my research nurse come in and go over the consent form and more specific information about the drug with you." The research nurse's information made me even more positively inclined to include this new Phase I study as a possibility. It's given IV, once a month. I'm all over that! Like my two other choices in Chattanooga, with this experimental drug, I could lie back and let somebody else just give it to me. I would need to be there for two days in a row the first two months, to have the pharmacokinetics portion done (the timed blood draws, etc.), but no long stints. I'd need to come back on Mondays for bloodwork and get scanned every eight weeks. We talked to Dr. Burris about the current appointments, scans, and possibilities and agreed on a plan. For consistency's sake in comparing my scans, I agreed to keep my Nashville appt. for next week. He'll talk to Dr. Johnson, I'll talk to Dr. Johnson, Steve and I will review the informed consent and do our research, and I'll see Dr. Burris again on September 24, to make a final decision. In the meantime, I have a little chemo holiday. Dr Burris gave me a hug and a kiss and shook Steve's hand warmly. "Let her eat or drink anything she wants. Even a Margarita, or two!" He smiled. I don't drink, but it was tempting! As I left the hospital, I marveled once again at the powerful psychological and spiritual principle that our thinking creates our reality. As we had driven toward Nashville that morning, I could not have even imagined anywhere in my universe that I would consider another Phase I trial any time in the near future, let alone possibly go directly into another one. Now, with reassurance, understanding, and my continued confidence in my whole medical team (in Nashville and in Chattanooga), I am willing to include it among the possible choices. The sun was shining as we pulled out. Suddenly, everything looked sunnier.
"The Long Haul" - Saturday, September 8, 2007 I'm feeling a bit frayed today. After all the emotional turmoil of the past couple of weeks, cresting as it did several days ago, I'm feeling shot through with holes. I can't quite gather myself yet. I had an experience a number of years ago that resulted in a Post Traumatic Stress Disorder response. What I've gone through in the past few weeks is nothing on that scale, but the resonance of the feeling is the same. My bell's just not been rung so hard or loudly. I'm still resolved about taking myself off the study. I'm feeling more anxious as Monday looms on the horizon and I know that I have to go to Nashville and let my medical team there know my decision. I know that there is no retribution when someone ends participation in a research study, no change in the care or availability of consideration in the future. It's still hard to be the one who is actively deciding to come off study, rather than letting my disease progression or some other factor beyond my choice do it for me. The past several days, I've padded around the house, feeling like I'm making lighter footprints than normal, like I'm not quite all here. My appetite has been terrible until today, when I got a taste for, of all things, a Burrito Supreme at Taco Bell. I have some little blisters inside my mouth and on my lips (not distinct mouth ulcers), but that burrito still tasted good. I'm getting a little nervous that I haven't gone to the bathroom since my public display at the BP station on Wednesday. This is now Saturday. I guess things will start working again soon. Maybe now that I'm eating a little more, it'll help. Steve has been exhausted, too, after our intense times this week. I checked back with him about his apparent support the other night, the even expression on his face and the statements about accepting my decisions. I also know that while he is a lousy liar, when the role is clear, he is a very good actor (one of his vocations as well as avocations). He smiled an open smile. "It really has to be up to you, Debbi." He gave me a good analogy that showed me that
he truly does understand what I'm trying to push through. He
said that he believes you can endure almost anything if it's
for a short time or if there's an end in sight. Purpose helps,
too, of course. But when something keeps hammering at you and
you don't know for how long and sometimes even what for (at least
in the short run), it wears you down. He said that when he was
a kid, he and a couple of friends used to do a thing to each
other to see who was tough enough to last the longest. You would
have to lie on you back and another kid would tap your breastbone
lightly with one finger, over and over again. He said that they
imagined this was the principle behind so-called "Chinese
water torture." Steve said that after only a few minutes,
pain began at the tapping site and soon it was unbearable. Just
a light touch applied over and over again could turn out to be
too much to endure. He compared my years of treatment with this boyhood rite of toughness. "You know, Debbi, you have gotten through really hard stuff. I think it's harder now because it just goes on and on. You keep getting hit in the same place again and again." I said to him that I had every reason to continue treatment. I love him. I love my family. I want to live. I'll get my steel back up for it. I also asked him to know that if the time ever comes that I decide I've had enough treatment, it wouldn't mean that I love him any less. "I know that, Debbi," he replied gently. It felt good to make sure that he really understands that. Wednesday evening, after we'd gotten home from the diarrhea ordeals and I had gotten cleaned up and put myself to bed, Steve went out to the store and did some much-needed grocery shopping, restocking our shelves and fridge after our weeks away in Nashville. He brought me a dozen beautiful roses, too. I said to him, "So if anyone asks what the occasion was for bringing me flowers, you're probably the only guy I know who could reply that it was because your wife pooped her pants." He didn't take the bait. "I didn't do it because of anything that did or didn't happen. I just brought you roses because I love you." I'll get through this time of feeling unraveled.
I have such lovers in my life, helping to knit me back together.
I'm still in this for the long haul.
"Against the Wall" Friday, September 7, 2007 The centrifugal force of my emotional world spinning and spinning the past few weeks finally flung me out of its orbit last night. I have been so unable to talk and think and pray my way to balance and courage with this experimental drug. It has just felt all wrong nearly from the very beginning. When I was in a study before, the feeling was very different. The fact that I can't gather my strength and resolve has been as scary to me as the prospect of a very short list of choices left to me for cancer therapy. When all else has failed in the past, I've always been able to fall back on my history of finding courage to press on. Not this time. I keep reaching for it and coming up empty. I was wakeful last night, reading to occupy my mind until about 2:30. I had set the alarm for 6:00 this morning, so that I could take the chemo drug and the Ativan and get the sleeping done before Hollin left for work, when I would then have the pleasure of caring for little Lindi today. Steve had been watching TV in the living room while I read in bed. When he came to bed, I could feel the tears pooling at the back of my throat. Three and a half hours until I'd have to swallow that drug again. I suddenly knew that I was done. I can't and won't continue on this study. Knowing that and then sharing that were two different things. All along, I've wanted to make this work. I know my family wants it to work. I know that I have few options left. I am thankful that I qualified for the research study. I was really ready for the regimen. My fighting spirit was strong and focused. But from the start, I could just not embrace this medicine as helpful for me. I don't know why. I sobbed and sobbed and sobbed in Steve's arms, the suppressed sadness from ten days ago breaking over me in wave after wave. I shared hiccup-y, broken phrases about being tired, being scared, feeling awful. Finally, I told him, "I've got to come off the study. I'm going to tell Dr. Burris on Monday." The lights were on at this point and Steve's face didn't change. There was nothing hidden in his expression. Steve didn't even hesitate. "Whatever you feel you need to do is fine, Debbi." "I'm so afraid of disappointing you," I cried. "You never disappoint me, whatever you decide." We talked and we prayed. I cried a lot more and I still feel like there might be another gallon of tears waiting right behind my eyes. Maybe the rest will come pouring out Monday, when I talk to Dr. Burris. We talked about the options Dr. Johnson had offered. We'll get Dr. Burris's thoughts on that on Monday. I had been thinking a lot yesterday about dying. When treatment is a choice, there is the element and variable of the patient of acting or not acting. In many ways, life would become so much less complicated and more manageable for my family if I were to die. Steve could pay off the mound of debt we've incurred, bankrolling all this healthcare. Maybe he could at least semi-retire, instead of juggling three jobs at nearly 64 years old. Hollin would have her modest inheritance. Maybe it would make the difference in helping her go back to school. I'm so weary of cancer. I'm so weary of treatment. I'm so weary of watching those I love the most in the world worry and ache for me. It had to be excruciating for Steve to see me so raw last night. As we were about to turn off the lights, I asked Steve, "How do you know when it's time to go on and die?" He didn't miss a beat. "I think you just know." "Well," I said, "since I had to ask, I guess I'm not there yet." Before we settled in finally, I said, "And I'm not going to take that damned medicine in the morning either!" and I turned off the alarm. We fell asleep entangled in each other's embrace. Today, I feel fragile and scattered. My image of the centrifuge seems to stick as I think about the past weeks. I need to devote my meager reserve of energy now to scraping myself off the walls, where I've been flung at the end of this month-long tornado. I need to gather it all and mold myself back together again. Coming back home again for treatment feels right for now. It's not about homesickness. It feels and looks like a clear path. I know I have to move on to other treatment, but I feel like I can find my resolve and my nerve again. Today, I feel a tremulous peace, sure of my decision, but shattered, too. Today, I know that I have to be true to myself and, as I have in the past, to trust my instincts.
"Been Down So Long, It Looks Like Up to Me" - Thursday, September 6, 2007
Vince Lombardi once said, "Fatigue makes cowards of us all." The problem with being off chemo for a while and then going back on is that I forget how unutterably tired it makes me, and how, when I'm tired, my coping abilities are so diminished. And yesterday, I was as tired as I can remember in a long, long time. And I was feeling as cowardly as I can remember in a long, long time, too. Yesterday was a new nadir. Before the long day was over, I was beyond coping. We pulled into the parking lot at the Sarah Cannon Research Institute yesterday morning and I couldn't even open my car door. I could feel Steve waiting patiently behind the car, no doubt to see what I would or wouldn't do next. Just the thought of going into that building and having to take those pills again was more than I could get myself up for. I've tried to make a friend of these pills. I know I need to. I need to think kindly of them, to send them where they'll kick some major cancer-butt, to encase them in light or love or something benevolent and positive and wave them on their way. But I just can't even muster any energy to direct toward them. As I sat in that parking lot, still seat-belted in, I watched the floorboard of the car, so I couldn't see Steve pacing behind the car in the side-view mirror. Finally, he came over and wordlessly opened the door. He took my hand and matched his pace to my reluctant steps. I signed in and was shown to the chemo chair. They took my blood chemistries and I waited, with my zip-lock baggie of Ativan and two bottles of AEE788 in my fidgety hands. One of the new nurses, Jim, was my nurse. He came over and scooted up a stool, close to me. He asked how I was doing. I started to recount the last week's doses and side effects and then I heard my voice get small. "I hate this drug," I said, the tears starting. He was very kind and responsive to me, not just to my symptoms, but to me. He put a gentle hand on me. That made me cry more, but I was very grateful. We talked through what I was doing to handle the nausea and diarrhea and what Dr. Burris and Dr. Johnson say. The lab's computer was on the fritz, so there was about an hour delay before I was going to take the drug. During that time, a friendly-faced brunette sat down beside me. "I don't want to sound like I was eavesdropping, but are you on AEE?" she asked. It turned out that she has been taking the drug since April. She was sympathetic about the side effects and gave me her own tips and strategies. She sounds like she's doing a much better job than I am right now of accepting that this is just what she has to do. She's 42. We traded email addresses so we can encourage each other. I suspect I'm going to get the better end of this deal. The labs came back eventually. I took my Ativan and Jim kept talking to me while I downed the six pills of AEE788. He offered me the Center's counseling services and got reassurance from me about what mental health stuff I'm availing myself of regularly. I also let him know that I'd use their counselor if I melted down there. Jim's warmth and interest in me as a person, more than a test subject, was so welcome yesterday. We got in the car to make the two-and-a-half drive home and I slept most of the way. It was about 4:00 when we arrived in Chattanooga, so we decided to have a nice dinner, since we hadn't been able to eat lunch. I had a fairly bland but delicious piece of trout, with potatoes, and a little serving of wilted greens. Just as I was finishing dinner, the rumbling in the lower regions started. I made an extended trip to the Ladies' Room before we left, especially since it was going to be another 20 minutes to home. As we pulled out of the restaurant parking lot, however, more insistent stirrings were occurring. I said to Steve, "There's a BP station about two blocks from here on North Market. Stop there, just in case." By the time we pulled into that lot, I was already facing an emergency. I hot-footed it into the convenience store and didn't see the restroom that is usually in the corner. "Where's your restroom?" I asked. "We don't have one." "Surely you have one you all use. This is an emergency. I'm a chemotherapy patient." "Nope. No one can use it. Our boss says so." I stood there clutching my cramping belly. "I'm telling you, I'm sick and I can't wait another mile to find another station." "Sorry, ma'am. We can't." Now I started crying, in humiliation and pain, "Well, it's too late now anyway. I've just soiled my pants. I need some place to clean up or it's going to get a lot worse for all of us, and quickly, while we're standing here talking." Although I was now so absorbed in my own misery and shame that I didn't hear him arrive, Steve came in about this time and said, "Please! My wife is a cancer patient. I'm telling you, she has to use the bathroom NOW!" One of the girls went to find "The Boss." Another kind one said, "Oh, for heaven's sake!" under her breath and just led me past mop buckets and paper supplies to a tiny washroom. "I'm so sorry, ma'am. Here you go." I was a mess. There wasn't much I could do except strip off my unders, lay in a supply of folded tissue like a makeshift, inadequate diaper and request a couple of plastic bags. I was still so sick and helpless, unable to leave the bathroom for many minutes, but the humiliation of having to beg for the most basic of human help hurt worst of all. Steve secured the plastic bags for me and finally helped me navigate my way shakily back to the car. When I got home, I had to soak in a bathtub. When she heard about my day, my daughter was angry and defensive on my behalf, and, by God! that felt good. "Mom! If I had been there and those girls were treating you that way, you would have had to bail me out of jail!" Aren't there almost always exceptions to a rule? I appreciate the girl who said to herself, "Screw the 'policy,'" and came to my rescue, late as it was. Just a little common sense and some human decency would sure go a long way. Just a little human decency on a down, down day...
"The Doodle Chronicles"
- Tuesday,
September 4, 2007 Life hands us unexpected stuff. Boy! Do we ever know that truth in our family! When it happens, you make priorities and do what you've got to do to handle it. Starting today, Steve and I are primary caretakers for our Blaylock grandchildren during the better part of the day. We have four-year-old Naomi and three-month-old Lindi from about 10:30 a.m. to 6:30 p.m. There's a reliable sitter who has ably and lovingly handled our youngest Hampton grandsons, who will be helping on the days I go to Nashville, but it's the Peepaw and Nanny Hampton Show the rest of the time. All this transpired when my daughter, Hollin, returned to work after maternity leave. Even with the break she got on daycare as an employee at a daycare center, it became rapidly apparent that a financial catastrophe was about one paycheck away. The cost of daycare makes it almost impossible for working class families to do just that: work. Before Hollin started looking for another job, I sat down with her and did some math. I reminded her not to do anything precipitate about changing jobs, unless and until she was sure that the cost of daycare was factored in. The way I figured it, if she needed to pay full-cost daycare for a newborn and a four-year-old, she was going to need to gross at least $15,500 a year, just to pay for the daycare, and that was before a nickel could go toward their household bills. It seems to me that if there were ever a time in the life of a family that the government should offer some subsidy, it should be for families with young children. This would enable parents either to put the subsidy toward quality daycare, or perhaps even to stay home with their young children in those critical first three years. Seems logical to me. Other industrialized countries do it. Since that option is not available in this prosperous country of ours, Hollin quickly realized that it might be best just to get a second shift job. As she and her husband talked this over, they acknowledged that they wouldn't get to spend as much time together as a couple, but economically, if they paid their dues now until the kids begin school, it made the most sense. Steve and I talked and said that we could help catch the kids until Rodney gets home from work. At first, it seemed that this would mean from about 2:30 to 6:30 p.m., but the position Hollin was offered turned out to be from 11:00 a.m. to 7:00 p.m. "Now, what do I do?" she asked us anxiously, when the offer came through. Steve didn't even blink. "Take it. We'll make it work." So today is the first day of this new arrangement. Steve trundled off to work today at our son's eBay store, where he helps with packing and shipping, with Naomi in tow. They went with a goodie bag of things to occupy her, a Cinderella lunchbox filled up with stuff, a sit-upon, and a new Cosco booster seat for his car. And as for me, it's the beginning of the Doodle Chronicles. My son-in-law has nicknamed baby Lindi "Doodle." We've already forgotten why, but it's stuck. Little Lindi is an easy-going baby, the one I never had. There may be some poetic compensation in this for me, since Hollin had to have been one of the most difficult infants who ever made her way into this world. Lindi cries when hungry (Hollin cried all the time), when she needs her diaper changed (Hollin cried all the time), and just before she falls asleep (Hollin cried all the time). She's beginning to smile and loves to look at colors and shapes, lights and movement. Music interests and settles her down. She's eating about every three hours, so that's pretty easy. I've only put the diaper on backwards one time so far today. She watches me with curiosity and intensity, her fist stuffed in her mouth. She likes her little bouncy seat with the fish and bubbles to look at and the incessant music that sounds like it's from a bad Japanese cartoon. The UPS man just delivered the car seat base for us to install semi-permanently in my car, so that I can learn the joys and wonders of the car seat/baby seat/stroller unit concept. Snap in, snap out and there you have it. Things have come a long way in 23 years, since Hollin's car seat days. I remember hauling around strollers, Umbrollers, baby seats, and car seats, sometimes all in the same trip. I was amazed and happy to see how quickly and naturally feeding and gentling a baby into sleep came back to me. I again savored the pleasure of how, at this age, Lindi's little bottom still fits in my hand when I hold her, how she turns toward my chest to cuddle and enjoy her pacifier. The other baby in the family, our puppy Gracie, spent an agitated hour or two trying to figure it all out this morning, but she's asleep on the couch finally. She also managed to learn quickly that she could be near the baby, but not explore the baby with nose and tongue. A reasonable distance had to be maintained. We'll see how Peepaw did today with his little helper at work. I think this is going to work out just fine.
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