|
Joy in the Morning - November 17, 2008
My pain is significant. I know that some of it is nerve damage to my chest. That pain is particular and has its own familiar characteristics. For lack of a better description, I also have "liver pain" now. I remember and recognize it as distinctive. Since I've got cancer back on the surface of my liver, the nerves there are jangling, like an insistent phone, waiting for me to answer to hear the message that I already know. I appreciate the persistence of the caller, however, and my body's ability to draw my attention to it, over and over. But it hurts like hell. I've decided definitely to go on with the new clinical trial that Dr. Burris discussed with me a week ago. I left a message for the clinical trials nurse and, since it's only 4 p.m. in Nashville (they're on Central time and I'm in Eastern), I haven't given up hope that she'll return my call before the end of her day. I want to schedule the scans still required so that I can get myself in line to start this new drug as soon as possible. I know that the pain will not change much until (hopefully) that drug starts to do its work. I don't yet know how soon I can start the trial, presuming that the few remaining tests check out OK. It's kind of like jumping on a merry-go-round that is already in motion. I have to wait until it comes around to me again then hop on while it's rolling by. My nurse will be able to tell me when my turn to jump comes around. In the meantime, I have to find a way not to let this pain wear on my nerves or gnaw away at my spirit. I'm taking the Oxycontin and Lyrica faithfully. I'm using the Lidoderm patches, cut up into thirds since I'm in the Medicare "doughnut hole" and paying fully for my own drugs right now. Those patches cost nearly $7.00 a piece. I'm using Lortab for breakthrough pain. I find that evenings are hardest for me. Perhaps it's having been up and moving that aggravates it. The alternative, however, is lying down, which is really miserable. I can only sleep on my left side. My left hip is getting sore from being on it most of each night. I awaken myself whenever I try to turn in my sleep, so I rarely sleep more than about 40 minutes at a time without waking up. I'm getting really tired and grumpy. Tired, grumpy, and in pain tends to move me toward being pessimistic. I feel the undertow of it. I remind myself that all will be well. I remind myself that we have treatment options. I remind myself that my pain specialist can change my medicine dosages. I remind myself that if everything "fails," all will still be well. Yet the sand under my feet pulls away with each wave of pain. In the middle of all of this, my five-year-old granddaughter Naomi zinged me with her straight-to-the-bone child-wisdom once again. What a gift she is! In order for you to understand her insight and grasp of the truth, I have to talk once again about our old dog, Lizzy.   Lizzy was the world's worst and the world's best dog. She was anxious and mischievous; coming to us from what must have been tough former home circumstances, when we adopted her at about two and a half years old. It took her a while to settle in, and there were some things she never was reassured of, despite our love and care. She was mortally afraid of cameras (and anything else you might point at her, even a TV remote control). Because of her fear, we have almost no pictures of her. She was so frightened that it felt cruel to try very often to take her picture. We mostly just gave up. The one series we have, I took with Steve's medium format portrait camera when we'd had her about two months. I had hoped that she wouldn't recognize it as a camera, since it sat on a tripod and I could click it from a distance, once the photo was set up. But there was no fooling her. The photos show her in Steve's arms, then him straining to hold her, then Lizzy dragging him belly down across the lawn, as she tried to escape. When Naomi came into our lives, Lizzy was wonderful. She had settled into doggy adulthood, even early middle age, and was patient and gentle with Naomi. When Naomi was a new walker, she would hold Lizzy by the collar and want to walk with her. We were anxious about how safe this was, hovering close by, waiting for Lizzy to take off, dragging this toddler behind her. Lizzy loved to run and her powerful chest and front legs were a beautiful sight when she was in full, joyous gallop. When Naomi grasped that red collar, it was different. Always, always, Lizzy would walk slowly next to Naomi, at her pace. She was long-suffering about Naomi's guiding her everywhere, over and over again. They were inseparable buddies. Naomi was three and a half when Lizzy died
of cancer. She wept and wept to learn that she wouldn't be able
to play with Lizzy any more. Her mom and dad were gentle in their
explanations of what happened to Lizzy. Naomi understood that
Lizzy wasn't sick or hurting any more, but she frequently brought
up memories of Lizzy, teary and missing her dog. Even now, almost
two years later, she often talks about Lizzy. Gracie, our Springer pup who was sweet and a little crazy, was a good companion for Naomi, matching her four-year-old energy, but Naomi still missed Lizzy. Gracie went to live with our son-in-law when I got so sick last year, bunking in with her two doggy "cousins" and eventually becoming part of their household. We're grateful to Ron for his excellent care of Gracie and for his role in adopting her when I couldn't care for her. Gracie was a good "bridge" for Naomi, after Lizzy's death. A few weeks ago, when I was feeling especially low and frightened by my pain, we were getting ready on a Sunday morning to go to the Baha'i Center for our devotions and worship. Naomi came upstairs all dressed up and announced, "I'm going to church with Ma (her other grandmom, on her dad's side)!" "That's wonderful, Naomi," I said, hugging her and admiring her dress. "It's important to remember to take time to talk to God, to praise Him and thank Him for the good things He does for us." "Yes," Naomi said. "Like how God fixed-ed my dog." I was puzzled, thinking at first that she had said "doll" and trying to make sense of what she was saying. She pressed on. "You know, Nanny! I had a dog, Lizzy, and God fixed-ed her!" I was so overcome that I couldn't speak. I hugged her close to me and choked out, "That's right, Naomi. That's exactly right." She opened the front door to the beautiful
autumn morning and stepped out onto the porch. She looked up
at the yellow and red trees and the sky and the sun shining and
nodded with absolute certitude. "Thank you, God," she
said.
Crossroads - November 13, 2008
I am finally at the crossroads that I knew was just a short walk away. I had a CT and a PET scan last week in Nashville and saw my doctor this past Monday to discuss the results and what's next. It's one year exactly since I started the experimental drug that saved my life. But in the unique and devious ways of cancer cells, my disease has found a way to get around that good drug and progress despite it. I read a description one time about cancer cells being like delinquent teenagers on a rampage. It looks like mine have lifted my car keys and are joy-riding around, bashing mailboxes, overturning garbage cans, and maybe considering knocking over a convenience store. The good news is that the progression is not in any immediately life-threatening areas. As is typical of me and my historical pattern, I have metastases again on the lining of the liver and lungs, back into some bone (ribs 7 and 8 and the sternum), and lymph nodes in the chest and abdomen. Dr. Burris put it well, saying, "You're not on fire yet, but you've got your finger in the fire and we need to get it out." My PET/CT scan last Thursday had been an exercise in endurance, punctuated by whimpers. Lying on my back is the most uncomfortable position for me, setting off pain in the chest wall and upper back, and twinges in my abdomen, near the liver. When I try to read at night, I can usually lie on my back for about four minutes before I have to turn to my left side. For the scans, I was stretched out on my back, with my hands over my head, unable to move for 25 minutes. The liver pain revved up and up and up until I was giving a little whine at the end of each exhalation. Bless him, one of the techs came in quietly about halfway through the scan to let me know we were twelve and a half minutes into it. He took my hands in his, as they stuck out of one end of the scanner. I was amazed how his simple warm touch turned my pain level down immediately (even if only temporarily). When I talked to Dr. Burris about my pain and the recent intervention of my pain specialist (including getting me back on Oxycontin), he took my discomfort quite seriously. His initial response in terms of treatment options was to offer Ixempra, the latest approved drug for mets that is a cousin of the Taxol family. He was ready to give it to me that afternoon. My local oncologist in Chattanooga, Dr. Johnson, has been lukewarm about Ixempra for me and had preferred that I continue pursuing clinical trial options. I have a girlfriend who had a tough time on it, too, so my knee-jerk response to Dr. Burris saying "Ixempra" was an emphatic "No thanks!" Dr. Burris went out of the exam room to pull some clinical trial options to discuss. I spent the intervening minutes reflecting on my strong response. When he returned, I said to him, "I really had a reflexive reaction to your mention of Ixempra. I have a friend who had really bottomed-out white counts on it and has managed to stay on it, but it's been rough on her. If you really think I need it, however, I'm ready to hear more." He said that he considered using it since it would hit me pretty hard and fast and would help resolve the pain issue sooner rather than later. If we were to use it, he would prescribe a lower dose and would also use Neulasta injections to keep my white counts up. However, he also had some interesting studies that he thought I'd be a good candidate for, and one in particular. He described a Phase 1 trial using a monoclonal antibody (like Herceptin is) that attaches to a specific receptor site on the cancer cell, kind of like a key in a lock. In this case, that monoclonal antibody is also chemically bound and linked to a chemo drug in the Taxol family. When it gets to the receptor site on the cell surface, it releases the chemo drug right there. Cool, huh? At least, theoretically, it sounds novel and cool in the small cohort that has used it so far. There's not much data yet. This approach also sounded vaguely familiar to me. I believe that one of the women in my therapy group is also on this study, just starting it, maybe on Cycle 2 of her dose schedule by now. So, after presenting the choices to me, Dr. Burris said, "We don't have to make a decision today. Let's sleep on it. You go see Dr. Johnson as scheduled next week. I'll call him and talk with him in the meantime. You take the informed consent and review it and ask any questions you may have. You can decide next week and then we'll get started on whatever." At this point, Steve and I are most excited about the clinical trial option. Ixempra can still be our ace-in-the-hole. There is one more little practical wrinkle that I'll write more about soon and that is a change coming in my insurance coverage as of January 1, when BlueCross/BlueShield of Tennessee begins adding a 10% co-insurance payment for chemotherapy. Ixempra would fall under that new provision. As someone under 65 who is on Medicare because of disability, I do not, by law in my state, have the option of selecting a supplemental plan to pick up that co-insurance. Financial responsibility for that would be all mine. I feel like my insurance plan, which administers my Medicare benefits, is deciding to its own advantage when it's all things to all people (the marketing ploy used) and when it is just Medicare. I'll be talking with the state insurance commissioner and some Medicare advocates in a day or two. So, regardless of the horrific realities of health insurance, thank goodness for clinical trial options, for strong enough health to meet the inclusion criteria, and for a positive disposition toward being a test subject once again. We'll keep you posted on all fronts.
Focusing on Whatcha Got! - November 6, 2008 Our family loves Halloween. Steve's son Chris and his wife Jen usually have a fabulous party, including not one, but two haunted houses, tailored to kids of various ages. The food is always wonderful. The house is packed with everyone from babies to grandmas and great-grandmas. And, best of all, it's the excuse of the year to devise the best costume you can think of. It's also Chris's birthday, so there's an
Last year, I was still in the ICU in Nashville so we missed an exceptional day: Chris's 40th birthday. I was determined this year to make the party and to figure out something for us to be for Halloween. Two years ago, we had risen to new heights of ridiculousness as "Goth Grandparents." I was decked out in black with safety pins as earrings and a dog chain around my neck, and Steve looked positively maniacal, sporting spiked out hair, a nose ring, and a Sex Pistols tee shirt. So, what to do this year? I pondered and pondered, especially trying to think of what to do to use my bald head to an advantage. I briefly entertained the idea of being a pencil, dressing in yellow with a "Ticonderoga No. 2" sign and my head spray-painted pink to be an eraser. I just couldn't think of anything suitable for Steve to come as, as my partner in stationery supplies. Driving home from a doctor's appointment the
day before Halloween, the ghoul's muse shouted in my ear, "Be
someone who's already bald and known for it!" It didn't take but a minute for the face of "Deal of No Deal" host Howie Mandel to sweep across my mind. I could go as Howie! And Steve? Well, one of those gorgeous models, of course! We even had a silver case in which barbecue tools had come as a gift one Father's Day that would be easy to adapt to look like one of the money briefcases. We hit four thrift stores and found Steve a 42DD bra but no snazzy dresses. Other costume seekers had long since snapped up all the eveningwear. At Wal-Mart, however, we found a short black skirt and a tight top, shot through with metallic threads. We still had a long blonde wig he had purchased as part of his props for when he was acting at Chris's local dinner theater, Vaudeville Café. So! What did we have on hand? If I've learned
anything from cancer, it's focusing on what you still have, not
what you're missing. We collected pieces: my black high heels
for Steve, his tuxedo patent shoes for me, my pantsuit pants
and his black blazer and black shirt. Hollin got into it, painting
Steve's fingernails hot pink and doing his make up (and my little
"soul patch" beard) before the party. Steve tottered
around in the heels for a few hours to get his balance. Naomi taught him the finer points of sitting like a lady in a skirt, with knees together and ankles crossed. "Peepaw!" she would remind him. Then she would add in shocked outrage, "Not like that! I can see your crotch!" (just his black briefs, but still a breach of etiquette). I taught him how to display the money case and open it with some grace to reveal "$1,000,000." He reminded me to cross my arms more to bulk up my shoulders and to gesture with masculine confidence and Howie Mandel flair. We shaved my 1/8 inch of half-hearted hair growth down to shiny scalp, and I enjoyed being Howie for an evening. Off we went to the party and blew everyone
away. Of course, Steve in full drag was the centerpiece and cause
of lots of laughter. He has small ankles, nice calves and good
legs (even if they were hairy). He is a much handsomer man than
he is a good-looking woman, however. I told him that I'd surely
never try to pick him up in a bar! Frankly, he looked like an
aging madam
The Halloween Difference - October 31, 2008 Several years ago, I wrote a piece about spring
and sandals and the challenges of chemo-ravaged, aging feet,
my own feet that is. It's now autumn and since I've finally changed
my straw summer purse for my winter red "pleather"
one, it's time once again to retire the flip-flops, take off
the camouflage of dark nail polish and confront what I have come
to call "Witchy Toe." Throughout my long and checkered history with multiple chemotherapy agents for breast cancer and its many permutations, I have come through the skin and nail stuff that is often a lovely side effect. I've lost nails. I have had hands and feet blister and peel. I've had inflamed cuticles around my fingernails and toenails. I've fought fungal infections that hunkered down and stayed when the integrity of my nail beds was breached and my white counts were low. I've mostly recovered from those things, leaving nearly all of my vanity by the side of the road, but one, stubborn ugly reminder has stayed: the misshapen, darkened, thick, ridgy nail on my right big toe. It looks like it could be made out of rhino horn. When my daughter and I look at it, we break into giggly choruses of The Eagles' "Witchy Woman," only we sing "Ooo-hoo! Witchy toe" My five-year old granddaughter, Naomi, is really amazingly comfortable with all my physical deviations from the norm. Even with my generalized hairlessness, my one remaining reconstructed breast, the spider veins on the breastless side of my chest after two go 'rounds with radiation and the pitiful little tattooed remains of where the implant used to be, I think Naomi sees me as just Nanny. Periodically, she'll ask me once again about my Port-a-cath, wanting to know just how it works and what gets put into that bulge under the skin on my chest. My new "Power Port" and its extra bumps and dots warmed up the topic again for a while. Since I've removed my toenail polish, she's not even frightened by my feet, even though that one big toe does truly look like it could belong to a wizened and warty old crone, with children in the pot, fricassee-ing for dinner. All of this ease and comfort has been centered
around our house, where she has been for a good part for the
past four years. She and her baby sister, mom and dad live in
their own apartment downstairs, so my illness is just a daily
fact of life. She's now venturing out into the big, wide world,
however, as a kindergartner. Recently, we had an exchange that
showed me her awareness that we do live in a world very different
from that of most of her friends and classmates. A few weeks ago, her mother was having some car trouble. My husband, Steve, had needed to go to the local Sonic Drive-in and give her battery a jump-start. The next morning, when it was time for her to take Naomi to school, I listened to see if the car would start. Nothing. Not even a tentative cough or sputter. Dead again. I went outside in my bathrobe, no wig, no cap, and said to Hollin, "I'll take you all. Help me clear out my back seat and get Naomi's booster seat in there and I'll ride you all down the ridge." We quickly chucked stuff on the lawn and wrestled the seat into my car while Naomi stood by with a backpack almost as big as she is, watching the frantic switcheroo. Down the ridge we went to her school (Big Ridge Elementary) and got in the drop-off line. Now, I will say that Hollin wasn't looking much more formal than I, in her PJ pants and a tank top. But then there was me, bald as a grape in the traffic line, with the safety patrol kids (whom Naomi calls "the safety control") and teachers waving cars forward. A little voice came from the backseat. "Nanny, who's going to pick me up from school this afternoon?" Naomi asked. "Well," I answered, "probably your mom. Her car should be fixed by then. Peepaw is going to take her to the car place to see about the problem. If her car isn't fixed by this afternoon, though, I'll drive and Mommy will come along and we'll pick you up in my car. So, look for Mommy's silver car, but if you don't see it, look for my purple one." She was quiet for a minute as we inched forward
with the other cars toward the drop-off point. "Nanny?" "Yes, Honey?" I answered. "If you pick me up this afternoon, could you wear your wig?" Ah! The rubber hits the road! I thought. She's newly aware that her grandmother doesn't look like everybody else's grandmother. "Well, sure, Naomi. I'll do that," I reassured her. There was more quiet from the back. I could almost hear the wheels turning inside her little head and heart. She's a very compassionate child and wears her love and honesty right on her sleeve. She delivered the coup de grace with such earnestness, declaring, "Because I wouldn't want anybody laughing at my Nanny because she's so bald!" Her mother and I bit our cheeks to keep from bursting out in laughter. The safety patrol kid opened the door and Naomi staggered out under the heft of her backpack. "You will remember now, won't you, Nanny?" she called over her shoulder. Oh, yes, sweetheart. I'll remember. Always.
Poem Essay - October 26, 2008
|
|||||||||||||||||||||
