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 July 2007 Post Book Essays "The Rats, the Monkeys
and Me" -
Monday, July 30, 2007 "The Rats, the Monkeys
and Me" -
Monday, July 30, 2007 I've been at Sarah Cannon Research Institute today, the first day of taking my new drug, AEE788. It's been an emotionally draining day, of up and down and back up again. I finish this first day feeling up. I've been so eager to have a treatment plan and get moving on it since the end of April, when scans showed that my cancer was growing again. May, June, and part of July were spent investigating options in radiation and chemo. Days were chewed up in waiting rooms and getting more scans and biopsies. When I received the welcome news that I qualified for this Phase I trial, I was relieved and eager to get going. My most recent scans showed progress in the chest wall, in the liver, and in several strands of lymph nodes that should lie like strands of pearls under my breastbone. They are now enlarged and misshapen, full of cancer. While they are not immediately life-threatening all by themselves, I've been well-aware that they are a supply line of cancer cells. This is the depot from which trains travel out to more distant sites with potentially deadly cargo. So, since I'm finally getting going on new treatment, you would think that I'd be revved up and ready. Instead, last night I found myself sleepless and scared. It may sound like a cliché, but it really is the unknown that's frightening. Will the drug work? Will the side effects be unpleasant? Will the side effects be toxic? I awoke every hour last night, looking at the clock counting down toward the hour this morning when I would first place those pills in my mouth. I thought about the research that has led to this moment for me. Having watched a bit of the research process from the inside out, from the first conceptual stirrings, I know that this experimental drug started as an idea. Behind this drug is a notion that got tested in lots of lower life forms, and I mean much lower life forms. I remember reading research proposals in which the testing was to be done in yeast or, a large leap up the evolutionary ladder, in fruit flies. I knew when I read those proposals starting back in 1998, it would be years before the ideas might be viable for testing in a clinical setting. I got a little philosophical in the wee hours of the morning. Here I am, nine years since looking at cell biology proposals for the first time. Perhaps, just perhaps, whatever idea led to my drug, AEE788, has finally made it from yeast to me. As I considered entering this trial, I Googled the heck out of every identifying name, that I could for this drug. I could find no preliminary reporting anywhere. These are early days in the life of this drug. In the informed consent form I signed for this trial, there wasn't a lot of information about side effects or toxicities reported so far. There just isn't much yet. There was a little data, with phrases like, "one patient out of 18 reported..." There was also information about what was observed in rats. There was some information about what showed up in monkeys, presumably the last stop in the primate chain before getting to good old Homo sapiens. I do believe in the humane and kindly treatment of animals, especially those that are used as medical research subjects. Say what you will about animal rights, I, for one, am extremely grateful for the animals that helped to establish whether this new drug might indeed be helpful to me and whether it had a good chance of being tolerated. There is a wonderful spiritual concept at the heart of my faith that talks about the kingdoms of existence, from the mineral to the vegetable to the animal to the human, and how we fulfill our capacity when we act in service to the kingdom above us. The soil yields to the plant, giving it nourishment. The plant kingdom serves animals and us. Animals serve us in countless ways, from food to work to companionship, and even to research. We fulfill our purpose and destinies most perfectly when we serve our Creator and all that He has entrusted to us. So, this morning, as I showered and got ready to go to the Sarah Cannon Research Institute, I thought about the rats and the monkeys and me. I thought of the other patients recruited to this study so far, who have stepped out in faith and, yes, perhaps a little courage, to try this new drug. High risk can also mean potentially high gain. I thought about whomever the first patient was that placed those pills in his or her mouth and swallowed. I felt strengthened by those thoughts, ready to go. Thank you to all creatures, great and small, who went before me, and brought this opportunity to me, and filled me with a fighting spirit and hope once again.
"Clinical Trials:
An Important Option" - Sunday, July 22, 2007 I'm about to embark upon a grand adventure. I'm getting ready to enter a clinical trial. I'll be traveling to the Sarah Cannon Research Institute in Nashville to be among the first 233 people to receive a new cancer drug. The marketing department staff members at the pharmaceutical company aren't yet scratching their heads and trying to come up with some appealing, catchy brand name for this drug. Nobody is dreaming up an unforgettable logo. The drug doesn't even have a generic name yet. This drug is so new that it's still just a string of letters and numbers: AEE788. I don't yet know how many of us are already enrolled in the study and receiving this new drug. I understand that it should work by addressing the HER2 gene and some of her nasty step-sisters, as well as an assertive cousin involved in creating blood supply to tumors. I know that the www.clinicaltrials.gov site, which keeps up-to-date with clinical trials all over the country, says that the study is still looking for patients. I'm just a recent addition. There are different levels of clinical trials. You'll often hear "Phase 1" or "Phase 2" or "Phase 3". Because of all the drugs I've been on over my long history, Phase 1 trials are the easiest for me to qualify for. Phase 1 trials are the first time in humans. They are trying to determine not only if the drug is effective in humans, but what the toxicities are, and at what dosage level. I've got lots of faith in clinical trials. First of all, there is some poetic reckoning that harkens back to my childhood. When I was little, my dad was a pharmacist and pharmaceutical rep working in clinical investigation. He traveled from medical school to medical school in the South, involved with doctors and researchers in clinical trials for antibiotics, the new wonder drugs of the 1940's and 50's. We said good-bye to Daddy at the airport on Monday mornings and welcomed him home on Friday evenings. If I could have reached the car's accelerator and brake when I was four or five, I could have driven our family's blue 1956 Ford the 11 miles to what was then National Airport in Arlington, VA. I knew every turn from our driveway in Annandale to the baggage check area for departing flights. I grew up steeped in excitement over research and the advances being made in medicine, and my dad was part of it. Second, when I was Executive Director of the local affiliate of Y-ME National Breast Cancer Organization, I was invited to sit on the Institutional Review Board (IRB) of one of our local hospitals. This board was charged with reviewing requests to conduct research at the hospital and to be sure that any research was conducted ethically. It tracked studies already under way and reviewed any serious side effects there and at any other facilities involved in the study. Most important of all, the IRB made certain that patients' rights and safety were absolutely protected. One of our most crucial tasks was to try to ensure that the informed consent forms were understandable and thorough. A patient considering participation in a trial needs to know as fully as he or she can what the potential risks might be. I was impressed with the process and the absolute commitment to patient safety. IRB's came into being after the awful revelations in the early 1970's about the Tuskegee Syphilis Study. In one of the most shameful instances in American medical history, for nearly 40 years, a group of African-American men had been unwitting subjects in research on syphilis. Without their knowledge, many were left untreated and only observed by researchers watching the full, horrendous progression of the disease, as though these men were merely expendable commodities. Their wives, and therefore their children, became infected, too. This went on even after penicillin became the effective treatment-of-choice in syphilis in 1943. This went on even after the American Medical Association outlined ethical guidelines for patients involved in research experiments in 1946. This went on even after the international community accepted the Nuremburg Code of ethics 1947 in the wake of the Nazi atrocities perpetrated by the notorious Dr. Mengele. We were appallingly slow to catch up as a country, but once the whistle was blown on Tuskegee, Congress finally responded to this as an issue of national concern with the passage in 1974 of the National Research Act, to protect the rights of us all. IRB's were an outgrowth of this legislation, to try to guarantee that none of us would ever again be placed at risk unknowingly, nor without adequate institutional accountability and oversight. Third, I have had the privilege of reviewing breast cancer research proposals. Most of my experience has been with the Department of Defense, which administers Congressionally-directed research money for breast cancer and several other diseases. Several times, I was on a panel of 20 professionals as one of two breast cancer survivors who sat with equal status with the scientists, as "consumer" reviewers. We brought a face to the disease and added a voice as to the relevance of proposals under consideration, from the perspective of someone who had been through breast cancer. This model of consumer or advocate inclusion has been replicated by other research programs around the country, including the California Breast Cancer Research Program, for which I've also had the honor to review. This experience was new to me and I learned a tremendous amount. Again, I was struck strongly by the integrity of the process, including safeguards against any conflicts of interest and just plain bad science. All that said, if you are ever moving through conventional treatment options and getting to the short list of approved drugs, or if you're in a situation in which your physician offers a chance to be part of a trial, investigate clinical trials as an option. In 2004, I participated in a clinical trial at the San Antonio Cancer Therapy and Research Center in the development of the new drug, known then as GW572016, but now known as the latest weapon in the breast cancer armamentarium, Tykerb. I got great care. When you're in a clinical trial, you are monitored even more closely than you are during regular chemo. They measure everything, and often. While the Tykerb didn't adequately subdue my cancer in combination with the drug it was paired and I had to come off the study, I feel good that I added my little portion to the data and information about how Tykerb can best be used. It's now getting paired with Xeloda and being used for patients like me with breast cancer metastases. I'm so glad it turned out to be helpful. Because I've got heart damage from a drug I took early in my treatment for recurrence, I had some extra cardiac hoops to jump through to qualify for this new trial. We needed to be sure that this trial's potential side effects, which are not yet fully known, wouldn't put me at too much risk. I saw my cardiologist earlier this week and he felt satisfied that my heart is strong and doing well on the medicine I take every day. As a matter of fact, by all scientific measurement, it pumps more efficiently now than before my heart was damaged. He reminded me that the ultimate decision about the trial must be mine, but we always weigh everything against the current and more imminent risk of liver involvement from the cancer. So, Steve and I are off to Nashville tomorrow evening for our first night's stay at Hope Lodge, a kind of Ronald McDonald House for grown-ups. I get a PET/CT scan at 7 a.m. on Tuesday and meet again with the oncologist researcher there at noon. I'll know the full extent of my cancer at that point, both a status check and a reality check. If all goes as planned, I'll start the new drug on July 30. We'll make new friends and feel part of an important process. I hope that you'll think with an open mind
about clinical trials and get the opportunity not only to try
a novel approach to cancer treatment, but maybe to be part of
making history, too. I can't help but think that my dad is smiling
on me, remembering his happiest career days in clinical investigation
and watching me carry on the family legacy, now on the receiving
end. I'm glad to have this chance.
"An Update on Pain" - Saturday, July 21, 2007 I've gotten some emails from readers asking how the appointment went with the pain specialist and how my pain is doing. There's been some change on that front and some interesting adjustment to make. I was talking to my husband yesterday, saying, "This is just an area I never anticipated we would have to deal with, at least not this early." I've been fortunate up to now not to have much bone involvement, so pain has kind of broad-sided me. I saw a pain specialist a week and a half ago. This practice had a pretty diverse and comprehensive make-up, from nurses and nursing assistants, to nurse practitioners, to a psychologist, to a physician. I got lucky. I saw the nurse practitioner. I'm a little prejudiced toward nurses as a former nurse myself. I know that a nurse is trained to look at and consider a patient in a really whole way. My nurse practitioner, Deb, won our hearts and confidence immediately. She's a little fireball. About 5 ft. 1 inch tall, she's an energetic, plain-spoken redhead. She did a thorough assessment of my pain, gently and yet incisively evaluated and inferred our likely financial situation, took practical things into consideration, and came up with a plan. She's a charmer, too, and knew how to use that power to win us over, not in a manipulative way, but in the way of a seasoned woman who is confident in herself and in her professional acumen. She determined that I have two trapped nerves along the ribs on my right side. She said that scarring has probably been the cause. She took my pain seriously. She took my concerns seriously. She took my constipation seriously. She took my income seriously. She took my husband into consideration, turning her chair to include him, right from the start. I really like her. She said that we could do a nerve block, but preferred to try to manage with medications first. So, she tweaked my dose of Lyrica up and had me stay on the Oxycontin, at least to use the ones I've already purchased. She'll see me the day before they run out. She added something that I was, frankly, a little skeptical about, but that has turned out to be a great help. She prescribed a Lidoderm patch to put over the main area that seems to be the root of the pain. This patch, which looks sort of like one of those Icy Hot patches, is impregnated with a 5% strength gel of Lidocaine. It's like getting a gentle, big local anesthetic over the area that it covers. It's suspended in aluminum, so the literature reminds you not to have it on if you've got to have an MRI. This suspension keeps the Lidocaine on the skin surface, so you don't absorb a big hit of it into your whole system. I know that it really helps because last Sunday night, I took it off for the night for the first time. I figured I'd leave it off until after I saw my oncologist on Monday, knowing that he'd want to poke around on my chest to feel for nodules. Bad idea. About three o'clock, I came rocketing out of the bed, like I'd been hit with a cattle prod. The rib pain came roaring back and I put the patch back on. Dr. J. could just peek under it or I could peel it off if he wanted to feel under there. So, I'm a believer. My nurse, Deb, said that when she worked in a trauma setting, she would sometimes use Lidocaine patches on accident victims with injured ribs who were too drunk to receive narcotics, and that it helped. Call me a convert. Since I mentioned the constipation, here's a tip, too. She's got me on Senakot-S; that's the one with some Colace added as a softening agent. As I write the words "softening agent", it sounds like we should be talking about some lovely, spa bath salts or something instead of stool stuff. Believe me, the results are as good as a day at the spa! You can take a fistful of Senakot in a day, if you need to. I'm currently winning the Poop Wars. I have had a new little wrinkle turn up. If my rib pain is the house guest who has set up housekeeping indefinitely in my downstairs guest room, my new pain is his best friend who is now freeloading along. I've now got some pain in my right shoulder, back across the muscle to my neck, where it goes up to the base of my skull. When I had my bone scan last week, preparatory to starting a clinical trial, I noticed that they did extra oblique views of the ribs and upper chest, so maybe we've got some stuff cooking in the bone. This new pain was also hot and hard, and was untouched by my current regimen of recently prescribed drugs. I had a loop of pain traveling between my head and neck over to the shoulder and back again, and no position or anything seemed to be able to quell it. I spent a good part of the night a few nights ago with my arms up, leaning against the armoire in my bedroom, resting my fingertips on the top of it, trying to just push the pain back a little. It was hard not to think, "Shoulder - no more writing. Neck - awfully close to brain. Base of the brain - brainstem, which is balance and breathing. Uh-oh." So when those thoughts came into my mind, I took deep breaths. Simple, but powerful. Breathe. My nurse practitioner is concerned about the sudden emergence of this new pain. I think it's just because I need to be back in active, effective treatment to shrink whatever. I had my oncologist's office send the bone scan results over to her, so when I see her next week, she can know what she's dealing with from a pain relief standpoint. In the meantime, she upped my Oxycontin, added Motrin, and gave me full permission to take some Percodan if I need to for breakthrough pain (and reminded me to take more Senakot). I pointed out to Steve that I am now on more pain medication than I was with a full-blown radiation burn. He responded that he thought that in some ways, this was more serious. "This is for the long haul." And I know it is. With my medicine adjusted for this new reality, I slept deep and long last night. Good, dreamless sleep, not worried about the pain and secure that this new clinical trial in Nashville will soon begin and throw some new ammunition at the cancer. I'm ready.
"The Red Dress" - July 12, 2007 There are moments in our lives when simple things become iconic. My red dress was that for me. About nine years ago, four years after being diagnosed with breast cancer and undergoing a double mastectomy, I decided to have breast reconstruction. This was not an easy decision for me. Initially, I had not wanted to bother with breast reconstruction at all. I was truly perfectly content to be free of the cancer and to adjust to life with two silicone prostheses, tucked into the soft pockets of a prosthetic bra and snuggled up close to my heart each morning as I got dressed. The familiar weight of them against my chest was comforting. I was happy with how they looked under my clothes. I had gotten used to how my chest looked, all healed up, with two slim diagonal scars where my breasts had been and a clean, uncluttered expanse of chest. In the autumn that I became engaged to my husband, a seed began to grow in my head. I was feeling good, happy in love, in fine health, enjoying a new job, looking toward new beginnings and second chances. Possibility was the theme of my life. And into that realm of "possibility" this little idea began to wheedle its way: breast reconstruction. I was feeling pretty and desirable and regaining confidence after a horrendous two years of separation, divorce and spiritual testing that nearly took the hide right off of me. Breast reconstruction began to insinuate its way into my laundry list of "what if's" that autumn. It all came to a decisive moment on the day I went shopping for a formal. Steve and I had to attend a big formal event at the hospital where I was housed as the director of the local affiliate of Y-ME National Breast Cancer Organization. I went at lunch one day to a local shop that specialized in formal gowns and offered hundreds and hundreds of choices in every style and color imaginable. I thought this would be an easy trip. Find something in a warm color, a little sexy but not too crazy for this Catholic hospital event, and get out of there. An hour and a half later, I was a wilted, crying, spent and grieving mess. I had tried on at least 50 dresses, trying to make them fit. These dresses were all designed for women with breasts, an essential part of what makes us immediately recognizable as women as we walk down the street. No matter how I maneuvered my prostheses, with or without the bra, I couldn't make any of them work. No fitted dresses, no spaghetti straps, not even any dresses that covered the chest with cute high necklines. There was just a big disconnect between my absolutely flattened chest and how a normal female chest slopes gently from the neck and collarbones toward breasts then blossoms into those lovely things. For the first time in four years, I really missed my breasts and felt fully what I had lost. I sat in that dressing room, with a pile of discarded sequins and satin at my feet, and wept and wept and wept. A few days later, I gathered my emotional reserves again and went back and found a pretty electric blue dress with a lace overlay that held the bodice in place. It was pretty, but I knew I was settling. So now, there was well-tilled soil, rain and sunshine for the seed of the idea of reconstruction to take root and stretch toward full flower. I began to investigate in earnest, looking at other women's reconstruction, talking about what it took to do it mentally and in post-op recovery time and discomfort. I kept this all to myself, very uncharacteristically in Steve's and my relationship. Since we were planning a wedding, I figured that if I decided to do something about it, it would be after the wedding anyway. Several months after we were married, I decided to go ahead with breast reconstruction with implants. Steve was taken completely by surprise that I was deciding to enter territory that had been totally off the map for me ever before. I wanted it to be my decision for me, and it was. There is a whole account of that process in my book, but lately I've been reflecting about "the red dress," which got passing mention in the book. Once I was healing, with the potential new "breasts" still high on my chest, tight with tissue expanders and plumped out with 300 cc's of saline per side already, I decided to go back to the dress store. This was just on a whim, thinking that I would see how a dress might fit me in the future, when I was ready to shop for easy-to-fit clothes in a few months. The Red Dress was hanging by its slim little straps, beckoning me. I tried it on and let out a reflexive little whistle and a "damn!" It was a gorgeous shade of tomato red, silky and fitted snuggly, hugging every curve and contour. This was back in my long-gone size 8 days, so "fitted" looked fine. It had an off-center slit up to oh-my-goodness and the bodice held those new saline puppies in a beautiful embrace. It was daring. It was sassy. It was sexy. It said, without a doubt, "Look at me. I am HERE." I had my Visa card out with lightning speed
and bought that baby. I didn't know where I would ever have the
occasion, let alone the courage, to wear it, but I had to have
it. How I looked in that dress and more important, how I felt
in that dress, crystallized how emblematic for me reconstruction
was in reclaiming myself, my wholeness, my desire to take a step
past my breast cancer. I had moved to a different place about
my physical recovery and had changed my mind about reconstruction.
I'm so glad that I did. It was challenging surgery with a difficult
recovery. I would do it over again in a heartbeat, even knowing
that I would later lose one new "breast" to a recurrence
in the chest wall. Reconstruction had been such an important
part, ultimately, of my recovery, that third mastectomy was the
hardest of all. I did wear the red dress one time. Our radiation oncology department had a Christmas party at the wonderful and legendary Fairyland Club up on Lookout Mountain, the Christmas after my surgery. I self-consciously donned the dress at the strong encouragement of Steve and my daughter, Hollin. I stayed under wraps all evening, with a black sequined jacket over the revealing top. At the end of the evening, my friend Katrina urged me to shuck the jacket and strut my stuff. These friends and colleagues at the party had all been part of my cheering section anyway, so I took off the jacket and enjoyed the appreciation of the Red Dress. Katrina snapped the only photo I have of it. In his inimitable, comic way, Steve looks like he's struggling to help hold up my ample new endowments. I just look happy. The Red Dress is long since donated to Goodwill,
where I hope some other woman or women have had the chance to
celebrate their own pleasure of just being a girl, spinning and
looking with joy and amazement at themselves in their own mirrors,
the Red Dress showcasing their beauty and power and health and
possibility.
"On Pain, My Newest Companion" - Monday, July 9, 2007 Over the past several months, I have had a visitor. The visits have become more frequent and this visitor started staying for dinner. Sometimes, as I turned out the lights to go to bed, I would find him still awake, sitting on the living room couch, clutching a pillow and blanket in his arms, apparently intent on staying the night. Lately, he's like the grown-up kid who moves back in against your hopes and wishes, taking up residence in the old paneled bedroom in the basement. He's my newest live-in companion: Pain. Since I've had breast cancer for 13 years and have been dealing with metastases for nearly seven years, I've been pretty lucky to avoid much pain. Pain has been the guard on duty, the guy with the semaphore flags, flashing out a warning to me to pay attention. Pain has been the herald of bad news, but the timely messenger, to whom I've been grateful. Well, now he seems to have taken early retirement or a sabbatical or something and he's moved in with me, making his presence known throughout the day, hungry for attention and acting out far beyond his former duties as a messenger. He's demanding and self-centered and not easy to live with. I've had a load of chemo and radiation over the years and finally some nerves are protesting. I guess it had to happen. What I'm experiencing is a red-hot wire of pain along one area of my chest wall. When it revs up, I know I'm in for a siege that I have to ride out. The pain starts along the nerve and is unlike any other kind of pain I've had before. By the time you get to be my age (55), you've experienced some pain and can commiserate with your peers. There's labor pain and post-op pain and the onset of degenerative arthritis. There's some pain that you can enter into competitive discussions about misery, too, if you're so inclined. I've had sciatic pain when I had a ruptured disk and fragments of the disk were crammed up under the nerve, sending shocks of pain from my lower back down to my toes. That pain was accompanied by some honest-to-God whooping and hollering. That was ultra-violet pain during which I felt like I'd been hit by the broad side of a sword and twanged along the whole long nerve, from stem to stern. I could stand or lie down, but I could not sit or attempt to sit without sending off waves of unbearable pain. I spent several months unable to sit on the john and mastered the art of hanging onto the towel rack and leaning back with increasingly accurate aim. Not a very marketable skill, but an essential one for the circumstances. A half-hour out of the recovery room, after the removal of the disk, I remember the simple pleasure of sitting on the potty. This new pain is different. This pain is orange and hot. It is a searing pain, like a friction burn to the power of ten. Once that part heats up all along the nerve, then I get scintillating fireworks of pain, popping off sporadically along the chest wall the kind of pain that makes you suck in your breath. The pain often spreads until I have an area on my chest and under my right arm that feels inflamed, even though the skin color is unchanged. It is throbbing and I imagine the pulsating surface of the sun, with the spumes of solar flares rocketing upward. This is the kind of pain that brings me upright out of sleep and makes me walk the floor. It is worse if I lie on it, but otherwise it seems unaffected by position. I can't correlate its onset to any activity or other factors. One of the most uncomfortable episodes recently occurred when Steve and I were in the theater, enjoying the most recent "Pirates of the Caribbean" movie. Thank goodness, I had a shawl with me and remembered the transferable high school skill of being able to discretely shed my bra and prosthesis and stuff it into my purse! I've been on Oxycontin for a couple of weeks, added to the Lyrica that I had already been taking. It's been a Godsend, except for two things: periods of sleepiness during the day and the challenges of constipation. I've eaten fruit, fruit, and more fruit and have taken plenty of laxatives. Oh, this is an area in which we cancer patients become experts! I hate my preoccupation with poop, though, and hear myself reporting my progress to Steve in phrases that aren't far from what we used to ridicule affectionately when my father would give "The Poop Report" every morning when he was in his 80's. I have an appointment today with a pain management doctor. We'll see what he or she can do. In the meantime, I'm carrying this pushy new tenant everywhere I go, trying to teach him to be a better guest, trying to accept his presence and know that he has something to teach me. I just want to learn it fast!
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