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 August 2007 Post Book Essays "Scans and the Short List" - Friday, August 31, 2007 "Home Again, Even for a Day, is Sweet" - Saturday, August 25, 2007 "Still Grouchy and Reluctant" Friday, August 24, 2007 "Meltdown in Music City" - Thursday, August 23, 2007 "Zits Again!" - Monday, August 20, 2007 "Dreams, Death and Dust Bunnies" - Sunday, August 12, 2007 "Learning to Live with AEE788" - Wednesday, August 8, 2007 "Sunday, August 5, 2007" (Poem) "My Love" - Saturday, August 4, 2007 "Hope Lodge" - Wednesday.August
1, 2007 "Scans and the Short List" - Friday, August 31, 2007 I've seen two oncologists this week: my new oncologist researcher in Nashville, and my long-time oncologist at home. I got my scan results this week from the PET/CT I did a week ago. The results were not real definitive. It is early days for this experimental drug, my having been on it only one cycle. There was not progression in any lesions in my liver or pleura. There was, however, a significant increase in the uptake of the radioactive glucose by my cancerous lymph nodes underneath my breastbone. As we talked to Dr. Burris in Nashville, he also expressed some concern about my biopsy results from the area sampled a month ago, where my cancer first started. Since I've had breast cancer for so long, we've known that the characteristics have changed some over the years, including some of my chest wall tumors having shown up as HER2 positive. The results of this most recent biopsy showed that area only mildly overexpressing the HER2 gene. This experimental drug is going after HER2 and other similar genes. I think Dr. Burris may be worried that we could be chasing the wrong thing. But, since my scan results were not too bad, we all agreed to give it one more month. My tumor markers are rising, but again, in breast cancer, that isn't always a reliable predictor. Some days, it feels like we have to combine the best of tea leaves, casting chicken bones, reading astrology, and whatever is in the latest issue of Nature or Science. I wish this were a bit more precise, but it's the best anybody can do right now. We asked Dr. Burris what about other options, if I have to come off this study. He immediately could think of another trial that addresses a whole different cell pathway. So, at least that's a possibility. We went home, grateful that September's travel schedule is less demanding: just a once a week jaunt, except the week I'll have another PET/CT. I made sure this time that the scan (and drinking all that contrast) is not on a chemo day. My chemo side effects are still mighty uncomfortable. I still have nausea. My appetite is lessened (on the happy side, I've lost 10 pounds). The diarrhea is unpredictable but can be really miserable, as it was Wednesday. My poor little tuchus is still recovering. My problem is that I hate this experimental drug. I can't seem to befriend it at all. The nausea and diarrhea are really taking the starch out of me. A skewed part of my psyche hopes that AEE788 won't work for me so that I don't have to take it. If it works, then I have to decide how long I'm willing keep on feeling this rotten. When I saw Dr. Johnson, my hometown oncologist, we had a long talk. I asked him to review the scan reports and blood chemistries, to be certain that I was getting the right take on where we are. He agreed. The PET scan's showing the lymph nodes cooking hotter is not a good thing. The lack of progression in the liver and pleura are good early signs. Steve asked him if there were Phase II or Phase III trials I could get into. I had tried to explain to Steve that, given all the chemo I've taken over the years, I've automatically disqualified myself from most. Dr. Johnson said that Phase III's were out. Phase II's were a possibility, but that they come and go. Steve said, "Surely, there are a lot of people like Debbi, who are faced with this kind of thing." Dr. Johnson looked carefully from one of us to the other. "No, there really aren't." In my often blunt way, I blurted out, "That's because everybody else has died by now." Dr. Johnson kept his eyes of Steve and answered again quietly, "There really are very few patients like Debbi." I asked him what was left here at home for treatment options. He engaged in some great gallows humor with me then flipped back through my chart again. I reminded him, "Dr. Johnson, with this drug I'm on now, I've been on 18 different drugs." He gave a little shudder. "Wow! A shiver actually went down my spine as I really heard you say that." He shook his head and puffed out his cheeks. "Well, we could always go back to something you haven't tried in a long time. Methotrexate?" "I haven't had that since 1994-95. I'm open to that. Any other ideas?" "Well, Alimta." I remembered that he had talked about Alimta three years ago, hoping that it would be available soon for breast. Finally, it's a possibility. Dr. Johnson explained that it was in the same basic class as Methotrexate, but that it hits multiple pathways. It's been a beacon of hope in mesothelioma, an aggressive lung cancer associated with asbestos exposure that was nearly untreatable before Alimta. I'll talk to Dr. Burris about Dr. Johnson's ideas and we'll see how this month goes. As I walked to the parking lot at the end of the afternoon, I remembered this same feeling, this same situation, three years ago. I was truly down to the short list, just like this. It's really scary. I got really lucky, blessed, graced-out, or something three years ago. I had little hope at that time that there was much chance to change the course of what seemed like what was going to be a pretty quick downward spiral. I'm feeling scared again. This is a serious situation. But once again, there are things happening in research and in the realms of spirit and hope all the time. I'm not going to despair. I just need to see what's next in this journey. I've been at this crossroads before. I just don't yet know what's around the bend. I'm taking a deep breath.
"Home Again, Even for a Day, is Sweet" - Saturday, August 25, 2007 I woke up this morning at 9:54. I never sleep late. I've been an early riser all the way back to my nursing days over 35 years ago of working 7 a.m. to 3 p.m. shifts. I'm usually up and stirring by 7:30, at the latest. I swam up out of sleep this morning, astonished at the late hour, to smell coffee and bacon and the familiar aroma of my own bed sheets (a combination of Gain laundry detergent, Curel lotion, and Steve's Brut aftershave). I could hear the background music of Steve's voice and Hollin's, as they cooked breakfast together for our families, the chime of the dishes as Hollin got them out for breakfast and the sound of drawers and cabinets opening and closing. Ever so often, I heard my granddaughter, Naomi, telling them something in her happy, excited voice. Baby Lindi's coos and little cries punctuated all of this from time to time. A little bit of summer sun was just coming over the corner of the house and filtering through the slats of my wood blinds. The smells, the light, the sounds all felt right for the first time in a week. Home. I'm not generally given to homesickness as an adult. As a child, I had a great deal of trouble sleeping overnight away from home, right up to about the fifth grade. Perhaps my dad's alcoholism made me worried about what might be going on at home, if I weren't there. Perhaps I was just an anxious little girl. Once I got over that, however, the world was truly my oyster. I am an avid and enthusiastic traveler. I'm also one to whom creature comforts were never important when traveling. I've slept on mats on the ground in Uganda, in hammocks in Colombia, in cots in Canada, and in many, many buses traveling dusty tracts of rough highway on some continent. I've loved it all. This past week, I've felt like a little kid again, just anxious and eager for home. I'm usually able to summon the warrior in me, an Amazon in the best sense of the myth; I'm even breastless on the right, right? I can usually get on top of my fear or reluctance and press on through whatever medical stuff has to be done. This week, I just couldn't. I was a mess all week. Yesterday was the worst, as I faced a concentrated couple of hours of PET/CT scans, my chemo drug, and then driving home during the period that I was most likely to feel the worst. Well, I got through it, but it sure wasn't mind over matter yesterday. It was a pretty miserable day, even though Steve helped me try to take it in doable pieces: drink the contrast, have the scans, take your chemo, try to sleep, know that it'll all be better in about 12 hours. Several things about the day were easier than I thought they'd be. First of all, while I was waiting the 75 minutes from the time that the IV tracer was injected and when I could be scanned, the room in which I was resting actually had a space heater! No sub-freezing temperatures to endure! God bless those techs. Secondly, during the scan, they took care to cover my arms, which are extended over the head throughout the procedure, to be sure I was warm enough even on those otherwise exposed surfaces in the scan room, which is quite chilly. I looked like a mummy in a sarcophagus with just my eyes, nose and chin showing, but they made me comfortable. The drive home after the chemo drug was harder than I thought it would be. Even having taken the Ativan, I had some miles of travel in which I was holding a plastic grocery bag in my lap and dealing with being a hair shy of tossing my cookies completely. But again, this finally passed. Steve even found me a Cracker Barrel in the middle of nowhere so that I could eat some mashed potatoes, the only thing I was hungry for after the worst of the nausea had subsided. When we got home around 3:30, I literally knelt and kissed my driveway. Home brought tears to my eyes. I cannot describe how comforting and welcoming the sight of my own, dear home was to me yesterday. Our family's get-together last night for portraits and then August birthday celebrations was wonderful. I was tired, but Hollin fixed my hair for me and I think I'll look fine in the photos. My children and grandchildren were so tender and seemed as happy to see me as I was to see them. This has truly been a lesson in gratitude
about home and what it means to me. So this morning, when I woke up in my own bed, in my own room, on my own pillow, with the melodies of home stirring me awake, I was filled to overflowing with thankfulness. When I realized that my husband and daughter had safeguarded my sleep and done all the work of getting breakfast and gathering us together for Steve's legendary pancakes, served on our porch with the birds and hummingbirds visiting us, the preciousness of it was almost too much to bear. We go back to Nashville tomorrow for another
couple of days and for news of the scans. It's fine. Family and
home have fortified me again.
"Still Grouchy and Reluctant" Friday, August 24, 2007 It's 6: 55 a.m. in Nashville. Yes, that cheery
summer sun is pouring in through the east-facing window of our
room at Hope Lodge. This morning, I would be better housed at
Not-so-Certain Inn. Or better yet, Bitchy Bed-and-Breakfast.
I'm grouchy and dragging my feet about today. First of all, I am trying to gag down the second bottle of contrast for my CT scan this morning. I don't care what they've done to try to make barium palatable, they still need to keep working at it. I'm imbibing the "Berry Smoothie" flavor, having gotten bloody sick of the banana flavor recently. It sounds so refreshing and appealing but, trust me, it's just like chalk blenderized with some berry extract. I'll grant you, it's better than old unflavored barium, but not by much. Keep working in the lab, guys. And, by the way, who decides if you have to drink one of these things or two?? There's a lot of difference between a pint or so of this stuff and nearly a quart of it at one whack. I've had CT scans all over the Southeast and there doesn't seem to be consistency among the nuclear med honchos about how much of this you've got to down in order to produce a good image. Some places make you drink one container of 450 ml. Some make you drink two. This imaging center makes you drink two. Get together, fellas and gals! Talk about this! Make a decision over lunch. Better yet, make a decision over a quart of barium a piece. Next, I'm going to head off to the imaging center. The techs will be nice enough, as will all the staff. They'll be good at starting my IV; they do it all day long. I'll have a quiet time in a darkened room to let the radioactive glucose used for the PET part of my scan circulate thoroughly throughout my body. That all sounds pretty good, except that there must be some unofficial standard that says that all imaging centers must keep their thermostats on 60 degrees or less. I will lie there under those loosely woven cotton blankets for the 75 minutes they specify before I can be scanned and try not to shiver. It's always frickin' freezing in these places. Why? Most of us who come to these places are sick, debilitated, anemic. Have mercy! Now the complicated part for me: when to take my medicines in all of this. If I can take the chemo drug on an empty stomach and not feel too sick, I think they'll let me. That would get me started on the meds a little after 9:00 a.m., just before the scan actually starts. If I can't, it'll be at least 10:30 before I face the decision again. By that time, I'll be also facing the low blood sugar residual that is the ideal condition for a good PET scan. If I eat to relieve the hypoglycemia symptoms, I won't be able to take my chemo drug until two hours after that. That puts it into the early afternoon, way too late in the day. I'm going to have to be persuasive about taking the pills just before the scan actually starts, and I'm going to have to slip some Ativan in there a little ahead of that, too. All this is made more frustrating today because all of us in the Hampton clan are getting together this evening to take a family portrait and then to celebrate the August birthdays of our family members. This is a happy occasion. I want to be over the nausea and diarrhea by then. I need enough time to be through with feeling shitty, literally and figuratively. We lose an hour driving back into Eastern Time from Nashville, too. ARGHH! I should be happy about going home and all I feel right now is grouchy and pouty and like, "I don't wanna do any of this!" What I really want is a note from my Mom, excusing me from all of this today, including the chemo meds. Well, buck up, girl. You've managed to get the barium down (and keep it down). Time to pull on the sweat suit and head for the scanner. Try to heed your own advice, you big baby. One thing at a time. So get dressed and get moving.
"Meltdown in Music City" - Thursday, August 23, 2007 Steve made an entry in his own written record of our lives yesterday, citing lines from John Denver's song that says, "Some days are diamonds. Some days are stones." He reflected that yesterday was a Stones Day. I had a rough day yesterday. Some of the dust of it remains today. We have been in Nashville all week. This is only Thursday, but it has felt like one of the longest weeks of my life. I am getting excellent care. I am staying in a very comfortable place that isn't costing us a dime. I am with my husband, my best friend and best supporter. Outside, the temperature is a scorching 106 degrees, but I'm cocooned in air-conditioned comfort. I've had good food. I have clean water. I have the conveniences of technology at my fingertips. All the planets should be aligning, but yesterday I just felt out of synch with the entire universe. I think I'm just plain sick of cancer. As we pulled into a Wendy's for a late lunch yesterday afternoon, after I had slept my way through the hours when I would have had nausea from my chemo, I just started wailing in the parking lot. Thankfully, I was still in the car, but I got a major case of the snivels. "I just want to go home." I miss my house, instead of places that feel like hospitals and hotels. I miss my own bed, instead of this double bed with a smooshy mattress. I miss the smell of my own things, instead of the unfamiliar soaps and cleansers that keep our place here clean. I miss my own pillow, instead of the plastic covered ones here. I miss my kids and I miss my grandkids and the daily hubbub, instead of the lack of their hugs and noise and mess. I miss the little slice of easterly light that falls indirectly across our bedroom window, instead of the blast of dawn's early light that brings us up out of sleep in Nashville. I miss my nuisance-of-a-dog. There's no comparison and no logical explanation for that one. If we hadn't about to get out of the car at Wendy's yesterday, I could have sobbed for about an hour. If, in this heat wave we're in, the interior temperature of the car wouldn't have risen rapidly to about 150, I would have just rolled up the windows and howled. It's hard for me to really get into this sad place and let myself be there. Even as I write what I miss, I feel like I sound ungrateful and, even worse, whiny. A very wise therapist, however, once pointed out to me that you could hold gratitude and grief at the same time. One doesn't cancel out the other. One doesn't invalidate the truth of the other. Hold them both. That's just where I am so, while I'm at it, let me go on. I wish that I were well. I wish that I didn't have to keep taking medicine that makes me feel lousy. I wish I could have more than one consecutive day without an encounter (or five, or six) with diarrhea. I wish that I could still work and pull more of my share of the financial weight in the family. I wish I had my pretty original breasts back. I wish I had my pretty reconstructed breasts back. I wish that I had the energy to keep my house clean. For that matter, I wish I had a housekeeper. I wish that all my plans weren't contingent upon my medical appointments and the side effects of my treatment. I wish I had my sex life back. I wish my husband and kids didn't have to go through all this pain with me. I wish I could be more graceful and grateful about my illness today, but I just can't today. Steve is feeling it, too. This morning he said, "You know, I'm tired of all this shit, too. What I really want right now is to eat about two gallons of ice cream and watch Westerns all day." Yeah. I could even get into that, if it were on my own couch. I wouldn't even complain if I had to get up and let the dog out about a hundred times. Well, that may be a lie. I'm just tired of all this and I want to go
home.
"Zits Again!" - Monday, August 20, 2007 Well, this is the beginning of the fourth week on my clinical trial drug, AEE788. It's probably a little early to tell if it's working, but the protocol for the study calls for me to get a PET/CT scan this Friday, toward the end of this first cycle of 28 days. It's been a time of adjustment to the drug, figuring out how and when to take it to be certain that I meet the requirements of fasting two hours before and two hours after. The challenge of that has been to allow also for when to take my regular medications, especially the pain meds, and not have them splash down into an empty tummy. AEE788 produces moderate nausea for me beginning about an hour after I take it. I don't know if this is directly related to the drug or to the fact that in this study it must be taken on an empty stomach, or both. We've spent a while trying to deal with the nausea. When I found out that I couldn't reach for my old reliable Zofran or any of the next generation of that kind of drug, the nurse practitioner and my oncologist here prescribed Compazine. Throwing Compazine on top of all my pain meds really knocked me on my fanny, plus I got a little bit of one of the weird side effects of Compazine called dystonia. In its full-blown manifestation, dystonia can involve tics and jerks and odd movements of the mouth and tongue. In my case, I had some occasional jaw-clenching. I looked a little Tourette-y if you were watching me closely. So, we renegotiated and I tried Ativan last week. Ativan is primarily used to reduce anxiety, but it does have an anti-nausea effect and it worked. Unfortunately, Medicare doesn't cover this class of drugs, so I had to pay more than the co-pay for it, but it seems there's just no free ride, no matter what you do. Side effects or cost seem to be the devil or the deep blue sea in this ongoing metaphor. The Ativan makes me a little sleepy. I serendipitously discovered, however, that if I just get up early and take the AEE788 on a completely empty stomach with my Ativan, I can to back to bed and sleep for about five hours, through the time when I would experience the nausea anyway. Hurray! One of the other fairly common side effects of some targeted gene therapies is a facial rash or some acne. I began getting the pimples last week, first around the creases at the edges of my nose and then just a liberal peppering on my chin, nose and upper lip. I had experienced this when I was on the Tykerb trial and even had pimples in my scalp when I was doing that study. So, when the pimples hit, I wasn't surprised. I just thought, Well, here we go again. Before I go on to tell you more about having zits at 55 years old, let me tell you about my oncologist. His name is Howard Burris. He is an energetic, attractive man with a full head of silver-gray hair that looks premature to me. He's in his mid-forties, a West Point Grad, and did his residency at Brook Army Hospital in San Antonio when he was serving out his commitment to Uncle Sam. Before I met him, I first heard his nickname, which is "Skip." Skip didn't sound like a name for an oncologist for sure. It's so breezy. Maybe a pediatric orthopedic surgeon or a dermatologist could be named Skip. But an oncologist? I tried to imagine what he would look like. I had a kind of Ron Howard expectation of red hair and freckles. I could picture the young Skip Burris trudging barefoot down some country lane, a cane pole over his shoulder, a bucket of worms, headed off to the creek to fish before returning to his Aunt Bea's for a peanut butter and jelly sandwich and heading off to Little League. So, when I first met Howard Burris, with his mane of pewter hair and his crisply ironed Oxford cloth shirts, I thought, Skip??? But when he talks and interacts with you, there is an energy and warmth that makes me think, Sure! Why not Skip? And he is Howard Burris, III, so I know that his family had to make a distinction between Big Howard, Little Howard and then the grandson, Howard. I say all this to preface his reaction when I pointed out the new crop of pimples to him last week. His face broke into a big grin. He looked at my face and its blemishes with all the proprietary pride of a new father and said, "This is good! Do you know that there are recent studies that show that people who get the acne seem to do better on this drug?" Suddenly, I felt jubilant right along with him. His enthusiasm and certitude are infectious. I'd follow Dr. Skip anywhere. I Googled the study and found that Whacker et al (really, Whacker) have discovered a positive correlation between the facial side effects and efficacy of this class of drug. At the end of the abstract, the researchers even proposed a possible study that would systematically escalate the dose of this class of drugs to induce the skin reaction and zits so that they could even more directly study the relationship between acne and skin stuff and how well the drug works. OK, Skip. You've got me on board. Keep the AEE788 coming! Pimples, schmimples. Bring on the zits! 
"Dreams, Death and Dust Bunnies" - Sunday, August 12, 2007 Death must be working on me subconsciously. I know that the facts of my recent PET/CT scans are sitting in some corner of my psyche, brooding over being relegated to a shelf, but exuding their own dark energy nonetheless. I know that the inherent risk and uncertainty about the efficacy of this experimental drug I am now taking is scampering across my awareness at least several times a day. I thought that I was handling all of this recent stuff pretty well, having done this before, but then I had two dreams that it didn't take an analyst to figure out. Confluent with all of this is the fact that I have opened up my nasty home to a friend who wants to help me, and all the dirty little secrets of my inadequate housekeeping are now on display. I think I'm feeling a little vulnerable. Both the dreams occurred on the same night, so I felt like I'd better really pay attention. One of my nurses, Sara, is in my first dream. Sara has been my nurse when I was an in-patient with an infection and a low white count. Since she left hospital nursing to become a chemo nurse in my oncologist's practice, she has been my nurse over the past several years. I have learned to count on her initially in a time of crisis, and I've relied upon her week to week, in routine chemos and again in times of crisis, whether bad news or drug reactions or whatever. In this dream, I am the one caring for Sara. She is having some kind of a kidney crisis. She has a Foley catheter and she is producing copious amounts of urine. She is semi-conscious, unaware of me. I am trying to help give her bedside care. There is urine everywhere. Her catheter is leaking. Her catheter bag doesn't have a clamp on the little drainage outlet. I am pinching it shut with one hand, sliding around on the wet floor, pushing buttons for help, yelling for help. I keep thinking, What's wrong with her? Why is this just pouring out of her? Does she have a pituitary tumor? Is she dying? Well, there may be some explanations for this all this urine imagery, not the least of which is that our puppy, Gracie, still hasn't caught on with consistency to the notion of peeing outside. I spend a good deal of time and many sheets of paper towels frequently mopping up after her. Then there's the fact that I just plain miss my familiar nurses, much as I'm enjoying getting to know my new ones here in Nashville. I know I can count on Sara, and in the dream, I was the one caring for her, a real reversal of our usual relationship. I love her and would care for her but it was also clear that I was unable to do it adequately in the dream. If Sara might also represent me in the dream, what's wrong with me? Am I dying? And where was everybody? And the whole idea of urinating uncontrollably: is this the ultimate loss of control, or what? And now that I'm getting seen in Nashville, Sara is largely unaware of me, just as she was in the dream. On a more visceral and abstract level, to get peed upon can be an aggressive act, with the purpose of humiliating the one peed upon. Obviously, in this case, Sara/I couldn't help it, it was medical. But I was sure getting good and wet and just had to take it anyway. Having to take it anyway: does that sound at all familiar? Well, duh! This first dream came in the early hours of sleep Friday night. The second dream came to me about four in the morning, after many restless hours in between. In the second dream, I am relaxing on a patio, next to a pool. There are some people whom I don't really know inside the house. Their children are outside. It's just me and the children. Their little girl is a chubby, rosy-cheeked child, about six. She is wearing a "floatie" around her waist. Her brother is about 11 or 12 and seems slightly developmentally challenged, what we in less politically correct times might have called "a little slow". He gets in the pool first, in about three and a half feet of water. She runs and jumps in the pool and they start playing. The water is right up to her chin and the floatie makes her bob a bit, kind of unstable on her feet. She goes under the water and her brother is horsing around, just playing. He puts his knee on her to keep her down. She starts struggling and I begin hollering at him to let her up now. He looks puzzled. In the dream, I can hear her screaming through the water and realize that now she is definitely about to draw water right back into her lungs and is drowning. I jump in the pool. I manage to get her off the bottom, where she has floated unconscious, but I am not very strong and have trouble getting her to the edge of the pool. I am shouting at the brother to call 911 and get his parents. I am trying to get her up on the side of the pool, but I am not strong enough to do this easily. When I do finally get her on the cement by the pool, I can't remember if there has been a significant change in single-person CPR, the damned ratios of chest compressions to breaths. I can't remember if there is something I need to do first, to evacuate the lungs of the pool water. Strangely, I do remember the difference between salt water drowning and fresh water drowning in the effects on red blood cells. So what!? It's useless information in this circumstance! I don't have the strength to turn her over and get the water out of her. I'm trying to begin CPR, but I have the resistance of the water in her lungs. Finally, mercifully, I wake up. OK. So, here's the probable set-up for this one. That evening before, my daughter had told me that our four-year-old granddaughter had gone off on her own and jumped into the pool she had been playing in earlier, when she had been wearing a swimsuit with built-in floaties, only now she was just in her underclothes. My daughter dove into the pool and hauled her out. So, I'm wondering if I'm feeling like I might not be up to caring for her children safely or that I fear failing mentally and physically (or both). Am I trying to save myself? Am I realizing again that no matter how much I know, the outcome is still out of my hands?
So, I've been reflecting on dreams, death,
and the dust bunnies of major proportions in my home. I saw that
the British have a lovely term for dust bunnies: beggar's velvet.
I like that. I guess it's time for me to accept once again as
best I can that I've got to live with uncertainty, being out
of control, weakness, and a permanently altered capacity to do
the basics that used to be the bread-and-butter of daily life.
Like in both dreams, I need to keep hollering for help. I need
to keep sharing my vulnerabilities. Man, it's hard sometimes.
I just have to be the beggar, beg indulgence and let it be soft
as velvet to accept.
"Learning to Live with AEE788" - Wednesday, August 8, 2007 AEE788 is the name of the experimental drug I am taking. These pills that I take by the handful are the color of the Teaberry Gum wrapper, that rose-berry pink I remember from my childhood. I take five big capsules and one medium-sized capsule every Monday, Wednesday and Friday, totaling 550 mg. of this new, targeted gene therapy. AEE788 is running my life and I've got to figure out how to bring its role in my life back in balance. First of all, just the idea of getting to take AEE788 occupied most of my mental and physical (not to mention calendar) space the entire month of July. There was researching what studies were available. There was talking with my local oncologist. There were several trips to Nashville to talk with the research oncologist there and to learn about the study. There were meetings with his oncology clinical nurse. There were scans. There were biopsies. There were appointments with my cardiologist. There were echocardiograms. There was the informed consent form and the careful perusal of that document. There was my subsequent (and fruitless) Googling of AEE788 to see if I could find any preliminary reporting on how it's doing. And that was before I was accepted into the study for sure. Once I got accepted, my whole calendar got highjacked and I had to turn the controls over willingly to this drug and its research-driven tyranny. I dutifully entered into my calendar the days and times I agreed to be in Nashville for the necessary blood tests, EKG's and scans that will help the researchers understand how and if this drug is working in humans. My calendar for August is shot through with pink highlighting, reminding me when I need to show up 130 miles up the road. We've stopped unpacking our suitcases and keep a duplicate set of our preferred toiletries in zip-lock bags, ready to go. We keep a box of dry goods packed to pitch into the back of the car for our next trek up the road. The cooler yawns empty and ready, in a holding pattern in the kitchen. The dictatorship of this drug over my life currently is mostly tied to its administration and the side effects I have been experiencing on the day of ingesting the dose. The drug must be taken with a two-hour fast before and a two-hour fast after the dose. This means, I've had to decide when I need to get up to eat a light breakfast, which will be all but gone anyway by the time I take the pills. This means that I need to figure out if it's better to take my regimen of pain meds in the two-hour before slot or wait until two hours after. The problem with the two hours after thing is that my experience has been that I get nauseated about an hour after I take the drug. When the nausea was so miserable last week on Wednesday (on our way home from Nashville), when I got home, I took a leftover, last Zofran I found in a dusty box in the back of a drawer. Ahh relief! When it happened again on Friday and I was near my oncologist's office, I bummed an Anzemet sample from my nurses. Then I thought, Maybe I'd better call Nashville and be sure that it's ok to take these drugs. Good thing I did. They are in a class of drugs that is prohibited on the study. The folks in Nashville called me in a prescription for Compazine. Taking Compazine after using Zofran is like driving a 1974 Dodge Dart after zipping around in a 2007 MX-5 Mazda Miata. Oh, well. The final thing that definitely determines my whereabouts and my time is, I hate to say it, diarrhea. Yep. My old friend is back with this drug. Imodium and I are becoming rapidly reacquainted. About 4 to 7 hours after the dose, my old friend comes calling. Last night, he even paid a few unexpected nighttime visits. I hope this isn't a trend. So, as you can see, I'm living with a rather autocratic ruler right now. AEE788 is running my life. As a matter of fact, the post-dose nausea is beginning to overtake me, so I need to wrap this up. My job: how to let him do his job, but get as much of my life back as I can. That'll be a good thing to think about as I'm lying down. See ya. 
"Sunday, August 5, 2007"
Copyright 2007
"My Love" - Saturday, August 4, 2007 When I fell in love with Steve Hampton, it was that helpless, total love that everyone should have at least once in their lives. Any of you who have read Slapped Awake know that the fact of my loving him was a rather complicated thing. That I am now his wife, with close relationships with his children and good relationships within our extended family, is not much short of a miracle. It's pure grace. Believe me, I never lose sight of that. Not for a single day. We'll be married ten years on February 8, 2008. The wonderful part is that I still often feel that weak-in-the-knees kind of love for him. He always makes my heart beat faster when I hear his car pull into the driveway and then his footsteps on the porch. His handsome good looks still make me grin and think about him. His intelligence and humor continue to delight and surprise me. His loving heart and keen sense of justice are just two of his many fine qualities that I admire and respect. Ten years into a marriage, you get kind of settled in. There is comfort in that. There are routines. There are ways of making decisions and resolving conflict that are, by now, tried and true. There are even code phrases or subtle signals that can send a message or help avert conflict. In our case, if one of us is getting a bit irritable or unreasonable about something, the other one will say (with the best possible Yiddish accent), "Don't you get testy vit me!" The line should be delivered a la Gene Wilder in "The Frisco Kid." It usually cracks up the one acting pissy and defuses the situation. We've had our share of challenges, health notwithstanding. There were relationships to mend with his children. There was my daughter's turbulent adolescence to go through and the hazy role that Steve had as the stepfather and sometime-disciplinarian. That was more than plenty to handle. Our incredible kids all stepped in to work out the interpersonal issues with courage and honesty. There is now genuine love all around and a sense of belonging in this patchwork family that still shines because of its unity. Then cancer came back and really threw us all in the blender. All that it has done is to bring out the best in the family. So much love. So much support and concern. After these nearly ten years of marriage, much has changed. Age and aging have certainly made a difference. One big accomplishment during this time is that Steve finally quit smoking, three years ago, as of July 17. Despite the fact that he has emphysema from all the years he smoked, his lung function has improved significantly since he quit. His pulmonary doctor is surprised at the degree of improvement, and so are we. It's been a nice reinforcment for the great effort and success of Steve's cessation of smoking. The only downside has been a weight gain that he hates. I know he can get it off and will when he's ready. After all, he quit smoking, didn't he? I'm so proud of him. Cancer and feeling crummy a good deal of the time have put a large dent in our romantic life. Well, let's call it what it is: it's been more like slamming into a tree than a fender-bender. This has been an area of huge adjustment, disappointment, and wistfulness on both our parts for the good ol' days. Patience, open talk, and affection help us through, and time together when I feel well is cherished. There are still plenty of sparks! We've still got some zing. One of the enduring, sweetest pleasures remains just the weight and warmth of him next to me every night. One thing that has brought me so much happiness as I've heard from readers is their response to Steve. Some who knew him and saw his often funny, outgoing side, said, "I never knew this other part of him." From the people who don't know him, I've often heard variations on, "You are so lucky to have him. He is so good to you. His commitment to be there for you is amazing. He's really sensitive to what's going on with you." A friend who just finished the book said to me, "When I finished, I thought, What a great love story!" I hadn't thought of it that way but, yeah! All those things are true and now, so deep into our marriage, it has been good to be reminded by others. So many people are alone as they face treatment and procedures. In my first marriage, I was usually alone for these things, perhaps because I somehow sent the message that I could go it alone, perhaps by virtue of patterns that were long since set in cement. Having Steve's totally faithful and insistent presence and commitment to me has made the journey doable, emotionally and physically, especially the past seven years of facing metastases. He has made huge sacrifices to be with me. In the time we've been together, I literally can count on my fingers the few times that he has missed a doctor's appointment or chemo with me. And I'm talking hundreds of hours of chemo. Sometimes his good sense prevails over what I believe I can or should be able to do. The other day was a good example. I had told him when I was starting this new clinical trial that Nashville was only two and a half hours away and I really could do this. There was no need for him to miss all that work time. He was resolute, saying, "No, this is not even up for discussion. I'll be there, period. For one thing, you don't know how you're going to react to the medicine, even if it is an oral drug." Well, I can tell you right now that if I hadn't had him with me and driving me home this past Wednesday, I would have had to check into a motel to ride out the side effects, even though I was only 45 minutes from home when the upper and lower GI stuff hit me hard. As it was, he scouted out gas stations and rest stops, watched my face and its color, and took me seriously when I said, "Pull over now!" Steve has taken care of me when I'm sick to the stomach. He has emptied surgical drains. He has changed dressings. He has lifted me in and out of bed. He has gotten in the shower with me to wash my hair when I couldn't get my arms up that high after surgery. He has fed me. He has done weeks of wound care on severe radiation burns. He has learned to give me Neupogen shots. He has helped me pass many tedious hours in the chemo room, playing Scrabble and cribbage (and not patronizing me because I'm sick, which would really tick me off!). He has held me in the night when I'm scared. He has sung to me, danced with me, brought me flowers, read to me, written poems for me, told me I'm beautiful when I know that I was anything but, and made me laugh (often) with his antics and impulsiveness. He cuts me just enough slack for being sick but never too much. He has listened when I'm ranting, reasoning with me when I'm reasonable and reassuring me when I'm not. We've sung together, prayed together, worked together, traveled together, cared for and enjoyed grandchildren together, shared pride in our children together. He has done what needed to be done when medical expenses got high, including throwing newspapers at 4:00 in the morning and preparing breakfast in a hotel from 4:30 to 8:00 a.m., and then going on to his regular work. He is irreverent and Godly. He is steady as a rock and volcanic. He is a bit paranoid and prone to cynicism and also easily touched and uplifted by the good in people. He is frugal and generous. He is strong and emotional. He is messy and methodical. He keeps life interesting for me every minute of every day. Steve is my love, my soul mate, and my very best friend, and I am crazier in love with him than ever. I love him more than I have words for. He sees and accepts and celebrates who I am completely and invites me to get up every day, however I am, and just be me. Nothing more. Nothing less. What greater gift of love can there be?
"Hope Lodge" - Wednesday.August
1, 2007 While we are traveling for this new clinical trial, my husband and I have the boon of being able to stay at a Hope Lodge. I suspect that the concept of Hope Lodge has its roots in Ronald McDonald Houses. That non-profit project of McDonald's Restaurants began nearly 35 ago, providing housing for families whose children were seriously ill and receiving care away from home. Here's a little piece of impressive trivia: there are now 245 Ronald McDonald Houses in 28 countries. Ancillary programs for the broader health of children are in 49 countries. Pretty amazing, huh? And all this must have sprung from someone who addressed an obvious but unmet need: parents and siblings could sure use a home-away-from-home near the hospital where their critically ill child is being treated. Anyone who has tried to juggle child care while another child is sick, or has slept in a waiting room chair outside an ICU, trying to maintain their own health and some shred of sanity while worried nearly to death about a sick child, will understand what a Godsend a homey place nearby with real beds can be. Created and administered by the American Cancer Society, Hope Lodge is a kind of Ronald McDonald House for grown-ups with cancer who are facing treatment at a significant distance from home. It's a little different than a Ronald McDonald House mostly in that it is geared to the particular needs of cancer patients and their caregivers. Travel is expensive and, let's face it, produces its own share of wear-and-tear. The cost of travel and lodging could be a deal-breaker in deciding if you can go get the best treatment or not. We know. Our trips to San Antonio several years ago burned our way through $10,000 in travel, food, and lodging costs at light speed. This time, we looked for trials within a 250 mile radius of home. Provide a place where lodging is free and patients can prepare their own meals, and you've just ratcheted down some of the major financial stresses of cancer. We met a patient here who is facing full head radiation for brain metastases and then seven weeks of radiation to his chest to get at the primary source of his cancer. He said that in his case Hope Lodge made the difference between being able to accept the treatment of choice or not. He lives 60 miles away in a place with a small community hospital. His hometown is just 20 miles past the required distance threshold of 40 miles to qualify for a room at this Hope Lodge. He's grateful that he made the cut. Sixty miles away may not seem like much distance, but let's do some math. If he couldn't stay here, this patient with a big, serious cancer would have a 120-mile round trip every day. Driving back and forth five days a week racks up 600 miles a week. Since he'd need to do that for about 10 weeks, he would put at least 6000 miles on his car (and we aren't even giving him a little fudge room to get a week or two of care for a radiation burn). Gas here this week is $2.89. Let's round that up to $3.00, just to help cover at least one oil change during that time. He drives a truck about five or six years old. Maybe on a good day it gets 20 miles to the gallon. That's 300 gallons of gasoline at our rounded up price, or $900. Now, remember, he's also not working during this time. We haven't even begun to factor in the fact that he's alone and would be trying to drive back and forth with memory problems associated with full brain radiation and the increasing fatigue that goes with radiation. Then there's how that seatbelt is going to feel about three weeks into his chest radiation... You get the picture. Since he can stay here, he's with other patients. He can take the shuttle over to his hospital. He can eat in the hospital cafeteria or come back and do modest meals from the grocery store here. What's more humane? What's going to be the best thing for his health? Is this a no-brainer, or what? There are 22 of these Hope Lodge facilities around the country, of varying sizes and styles. In our case, it's a five-story building with 41 hotel-style rooms. It is within a mile of four top-notch hospitals and research centers. The facility has a small work-out area, day rooms with video players, a non-denominational reflection room, and laundry facilities on each floor. Anyone who meets the distance criteria can be referred by his or her doctor for a room at Hope Lodge. There is a large common area that includes a huge kitchen with commercial refrigerators, dry-goods storage lockers, and several freezers so that guests can lay in their own stock of food and prepare meals as they wish. Among those of us with cancer, there is a strong attractive force to form community and to seek each other out for support. Allowing patients the opportunity to help each other is part of the mission of Hope Lodge, too. Put a bunch of patients and their families together, already united by experiences with a common kind of adversity, and they'll glom onto each other. Throw in the opportunity here at Hope House to run into each other in the kitchen in our bathrobes and you've got impromptu support groups happening easily and naturally. I just met our friend with brain mets in the lobby a minute ago. It's 6:30 in the morning. He was alone, waiting for a cab to go over to the hospital, anxious about the MRI under anesthesia he's about to have. He could stop me as I headed for the elevator and tell me that. He could ask for prayers and support to ease his fears simply because we're in the same place here at Hope Lodge and because, metaphorically, we're in the same boat. Beyond the material benefits of using Hope Lodge what grabs you is its heart: the people here that it serves. I don't know if this is so at other facilities around the country, but where we are staying we've noticed that many of the patients at the Lodge (and at the Cancer Center where we go for my treatment) are much sicker than those we encountered in San Antonio. These are some frail, pale people. They carry their hope in their hands like a bouquet of wildflowers picked for Mama. In some ways, it has felt like we are all together, in a court of final appeal. Many of us are facing either few remaining treatment options or virulent, nasty, aggressive cancers that have high mortality rates despite all the advances in chemotherapy. Almost all of the people we have met so far are participating in a clinical trial of some kind or other. Their caregivers look worn and tired. Their children have that old-before-their-time look behind their eyes. These folks have been caught between the hammer and the anvil of cancer and pounded. So what do you see and hear among these people who physically often look like ghosts of who they must once have been? You hear laughter and animated talk. You see hugs and greetings. You see hands clasped. You hear encouragement and heartfelt "God bless you's". You see people who were strangers five minutes ago sharing deeply their fears, their faith, and an offer of friendship. You see amazing generosity and caring. There is always a row of communal offerings on the two islands in the middle of the big kitchen. What has surprised us in these few first days we have been here is to see patients or family members who have cooked for everybody: strawberry cake, homemade chili, the quintessential Southern breakfast of biscuits, sausages and sweet milk gravy. You see people reach out over and over again, past their own suffering to ease the suffering of someone else. Man! People are good! I suppose the cynics might say, "Well, of course! After all, misery loves company..." But I've got to challenge the cynics. I've seen it again and again. It's not misery seeking out misery. It's hope looking for hope. And Hope Lodge is not only a practical, effective, and very welcome source of assistance; I think it just might be an incubator for hope.
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Then
there's the whole housekeeping issue about to come down and just
how beyond me my house has gotten of late. I just don't have
the energy to maintain it like I'd like to. As a matter of fact,
I'm really down to about three friends who still remember me
when I was a good housekeeper. While I'm grateful for my friend's
upcoming help with my house, there's another part of me that
feels some shame and a sense of failure, even though I know that
cancer is definitely a major and completely acceptable mitigating
circumstance.
