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 October 2007 Post Book Essays
We went to Nashville this week to get my CT scans and to see Dr. Burris, all part of getting ready to start my new clinical trial drug next Monday, October 22. The CT showed some progression of the disease in all the places it has been (chest nodes, lung lining and liver lining). My liver function tests remain normal. The fluid in my lung cavity on the right is still in the moderate range. In the realm of late stage cancer news, this is all relatively good news. My biggest challenge lately has been pain, and I'm talking PAIN. I have pain in my chest, in my back and in my belly, toward my right side. I asked Dr. Burris about why this pain and why it is burgeoning, and he had a good answer. I'm fortunate that the cancer is still mostly in the linings of things rather than deep in the body of the organs. What this means, however, is that the growth of the cancer is in the area that is still replete with nerves. The linings of organs contain nerves (probably to alert us to things going wrong). He pointed out that when we have appendicitis, it's not the appendix itself that hurts so much as the lining of the peritoneum, which also gets inflamed. So, I get this pain in any or all of these places and it's a combination of the searing nerve pain I've had before and what I imagine an ice pick or a spear to feel like passing through tissue. It is flat-out, knee-walking, holy-cow pain. It is intermittent. But that means it also has the element of surprise. It tiptoes up behind me and grabs me hard. I spent a long time last night trying various combinations of pillows and elevation to find a position that would give me enough relief to sleep. I finally ended up back with my usual low-loft neck pillow, lying on my left side. I slept most of the night. When I awoke this a.m., I was pretty much pain-free. Ahhhh! I thought. I got up to take the dog outside and inside of two minutes was in the throes again of feeling like I'd been gaffed. Go figure! I got online last night to find Oxycontin dosage guidelines and found that I've been on the lowest dose, which makes perfect sense. Up to last week, not only had it held me, but I'd even been able to take it just twice a day, instead of the three times a day I had needed initially for the nerve pain in my chest wall. I was certainly relieved to see that there is considerable play upward that my pain specialist can use, if we need to. I spoke with her this afternoon and she said to double my dose at bedtime tonight and come into the office tomorrow. My Grandfather Lang was a butcher and had a grocery store (which he, unfortunately, gambled away once, during one of his addictive gambling binges). Up to the time he died, he had the habit of arising at 3:00 in the morning. This had been necessary when he was a grocer in order to get the produce and meat in and ready for customers. He usually opened the store himself and met the vendors. One time, he had a new delivery of meat and it was about 5:00 a.m. He had gone into the meat locker to hang the side of beef or pork or whatever large animal had just been delivered and would later require his artistic and capable hands to butcher it. He was a short man, barely more than 5' 1" or 5' 2" tall. He was standing on a crate in order to hang the meat, and the crate slid out from under him. The meat hook caught under his shoulder blade and there he hung until other employees arrived several hours later. It must have been just horrible in terms of pain and fear. I may have a little idea about what that pain must have been like. I'll surely be glad to see my pain specialist
tomorrow and let her help me get this under better control. I
wouldn't want to twist in the wind like this for long.
"A Dog is Born" - Monday, October 15,
2007 It's been nearly eight months since we brought our little Springer Spaniel puppy, Gracie, home. She has been a difficult dog, anxious, destructive, and hard to train and housebreak. If these liabilities hadn't been more than outweighed by her appealing looks, cute ways, close relationship with our granddaughter Naomi, and loving nature, I probably would have reluctantly considered a Springer Rescue option and had her adopted out. Some of the discipline and anxiety problems have been compounded by all of our summer travel back and forth to Nashville. While Hollin and Rodney have taken excellent care of her, Springers get very attached to their people and she missed us, pure and simple. We took her camping with us last week and sometime during that week, she turned into a dog. I had my misgivings about the prospect of bringing her camping with us. First of all, up to now, she could not stand to have us out of her sight when she was outside. Was this going to be a week of yipping and yiping? Secondly, Laura and Ron were bringing their two dogs and I didn't know how Gracie would get along with Luke and Lakota. As we got packed up a week ago to make the trip to Chilhowee, Laura offered to take Gracie overnight at her house Sunday evening, to get her used to the other dogs. In exchange, we got her oldest daughter, Jesse, to help us get ready and get packed. I almost asked Laura if she wanted to sell the island of Manhattan for a handful of shells. Sheesh! What a deal! So, off went Gracie in Laura's red Honda wagon. About an hour later, Laura called to say that the dogs were having a great time. Luke, a lovable, enormous Lab and Irish Wolfhound mix, was just relieved not to be the main playmate for Lakota. He's eight now and Lakota's four-month-old German Shepherd puppy energy wears him out. Laura says that she can get into a dog's mind and I believe her. She said she could hear the dogs. Lakota: "I've always wanted someone to play with!" Gracie: "And I've always wanted just to play!" Lakota: "OK! Let's play!" Gracie: "Yeeaahh!" And off they went, tearing around the fenced backyard, wrestling and tumbling, chewing and nipping, and wearing themselves out. Now, despite Lakota's being a younger female than Gracie, there are some definite breed and temperament differences. Lakota is an aggressive girl, bigger already than Gracie. She let Gracie know quickly, "Hey, you punk interloper with those ridiculous curly ears! I'm the Alpha Girl!" And Gracie, true to submissive, sweet, Spaniel wussiness, rolled over on her back, exposed her belly, flattened herself into the ground as far as she could and said, "Well, that's fine with me! Just grab me by the neck to seal the deal!" When we got set up in camp, the dogs had such a great time exploring and running around. The pecking order held and they did pretty well. Gracie got thoroughly played out over and over. She has come home so relaxed. If I include the four days or so before the trip that she didn't have any accidents inside, it's been a full week that she's done all her stuff outside. Hurray! She even stayed out on her run yesterday while I went in for a cup of coffee without acting like she had been abandoned on Mars. Gracie's intuitive, caregiver nature is still fully intact. When we were camping and I had my little "I want my mommy" meltdown that one morning, she was about 50 feet away. Before the tears had even completely filled my eyes and long before I had spoken what I was feeling, she had trotted quickly over to me and climbed straight up in my lap, gaining full eye contact with me. She held my gaze calmly then laid her cheek right next to mine. Today, she had been sleeping next to me as I read in bed. I've been having some pain near my liver (a new development) and was progressively more uncomfortable this afternoon. I put my book down and rolled over onto my left side to see if position might help. Gracie woke up, walked over behind my knees and surveyed the situation. She gingerly stepped into the eight-inch wide space between my belly and the edge of the bed and curled herself carefully and tightly into that space, right up against me. She turned her face toward mine and literally put her nose against my nostrils. She could not have been any closer to me unless she had figured out a way to go up my nose. I think she turned into a real dog this week. It's wonderful. And she has only chewed up one ballpoint pen since our return home. What a good dog!
"The Devil or the Deep Blue Sea" - Sunday, October 14, 2007 When faced with a dilemma in which the choices available were both bad, my Daddy used to say, "Well, it's the devil or the deep blue sea!" meaning, I suppose, that you could choose perdition or doom. I always loved the poetry of the expression. It implies a lose-lose situation and conjures up the image for me of walking a plank, with the devil prodding me in the back and the endless azure ocean visible to me on either side of my feet. I'm in that situation now with my latest accumulation (again) of fluid in my lung cavity. When I came through a miserable time of pain and shortness of breath the last night that we were camping, it spurred my decision to call Dr. Johnson (my oncologist) and to cut our camping trip short, coming home on a Thursday. I figured that this would leave Friday open, in case I needed to have another tap done of my lung cavity to remove the fluid that is squeezing my right lung. My chest X-ray a week ago had shown a "moderate amount" of fluid. I could find no guideline for what that means in cc's or ounces, but I know it distressed me to find out that I was producing fluid again just two weeks after I had a large amount drawn off. When I called Dr. Johnson's office, I reminded him that I am taking Plavix and 81 mg. of baby aspirin, to keep from clotting off my new stents in the vena cava and adjacent veins. The message I got back form him was that he would schedule the thoracentesis (chest tap), but that I should bring overnight stuff because I might need to be admitted after the procedure because of bleeding. I should be prepared in case I had protracted bleeding and needed a unit of blood. Whoa! Wait a minute! That freaked me out for certain! But sitting there in the autumn sunshine, with my cell phone flipped closed, still breathing fast and aware of chest pain, I thought, "Well, whatever. I guess the interventional radiologist will have an opinion, too." When we got home, there was a message from the nurse in cardiac short-stay, the same unit I was on three weeks ago, when I got my stents put in. I called back and had a talk with the nurse there, doing all my pre-admission stuff. When we got to the Plavix, she stopped cold and said, "When did you last take it?" "Last night," I answered. "Hmmm You need to know that usually the doctors like you to be off it three or four days before a procedure. When did you get your stents?" "September 19," I answered. "Wow! That's recent. I don't know about your being off your Plavix so soon. Just hold it tonight, but know that the radiologist may decide he can't do the thoracentesis when you get here tomorrow." "OK," I said. "He's the expert. I want him to make the call on what's safest and what the relative risks are, so I'm fine with that." The next morning, I was getting ready to pack my backpack and head to the hospital. I had eaten my very light breakfast, getting ready to stop eating or drinking before the procedure, which was scheduled for 1:30 p.m. We needed to be in admitting at 11:30. The phone rang. It was another nurse on cardiac short-stay. "Mrs. Hampton? I need you to know that we've talked with the radiologist this morning and he won't do the procedure unless you're off the Plavix for four days." Four days! That would end up being the day I'm going to Nashville to get my PET/CT scan, preliminary to starting the clinical trial the next week. The nurse also confessed her uneasiness about my being off the Plavix. Me, too, I thought. We decided that I'd call my cardiologist and oncologist and talk this all through. Those conversations ended up being with nurses, since all my regular docs were out of town on Fall Break with their families. The cardiology nurse added her own nervousness to the question of my stopping the Plavix. The oncology nurse shared the same concerns and also was frank about being even more concerned that we not do anything that might compromise my ability to start the clinical trial on October 22. She said that she'd talk with the oncologist on call in the practice and get back to me. At the end of the morning, we had reached an uneasy peace with a decision. The oncologist on call agreed that since I have only one treatment option left (that being the clinical trial) and I can only enter it on October 22 or I have to wait another five weeks for a new window in how the trial rolls out, we need to do everything we can to get me from here to there without any crises. I'll get my scans on Monday and see Dr. Burris in Nashville on Tuesday (the 15th and 16th), so I'll have more information about the fluid in the right lung cavity. Hopefully I can just tough it out for a while. I come off the Plavix around the 19th anyway, after the requisite month on it. Then I'm supposed to go on 325 mg. of aspirin a day, but that's all. In the meantime, if I get unbearably symptomatic, the advice is to head for the ER. They'll do an emergency tap and the bleeding be damned. We'll just deal with it on an emergent basis. The devil or the deep blue sea part of this is that I wasn't alarmingly symptomatic when I was carrying a liter and a half of fluid in the lung cavity last time. Walking around with lots of fluid in there isn't without its own consequences and dangers. My lung capacity is reduced by the volume of fluid that displaces it. In the absence of that lung functioning properly, my heart has to work harder to get oxygen around to all the body. If too much fluid builds up, it can actually put pressure on the heart, pushing on it and actually shifting it out of its normal position. Not a good thing. So, the devil or the deep blue sea? The only thing that really has a chance of making any difference in this scenario is chemo that might work. I need to start that as soon as I can and that's the 22nd. I guess I'll just tough it out and hope I can avoid an emergency situation that aborts the most immediate goal of getting from here to my first day of chemo. We'll see what Dr. Burris in Nashville has to say after the PET/CT. Fingers crossed!
"There is a pleasure in the pathless woods" - Lord Byron - Saturday, October 13, 2007 Well, we're back from our camping adventure. Chilhowee Mountain at the western edge of the Cherokee National Forest is a pretty remote area so, despite its being Fall Break from most public schools this week, it was pretty much just us, a few owls, a distant pack of coyotes that traded songs back and forth, and the clear sky.  Camping is an activity-intensive way to spend time. First of all, gathering and preparing firewood takes a good part of the day, especially if you're cooking over it. We cheated a little, using Ron and Laura's single-burner propane heater for quick warm-ups of water, but we cooked all meals over the fire. We all try to offer our finest or the most interesting of newly discovered recipes suitable for camp. The menu this week included spare ribs, cole slaw, and baked beans, taco salads, and chicken roasted with veggies in little "hobo" foil packets. Breakfasts included the obligatory "Hampton Camping Breakfast" of kielbasa, onions, and potatoes cooked in an unbelievably large iron skillet over the fire and served with a ton of scrambled eggs, pancakes, and bacon and eggs with Texas-style toast. Yummo! And a bottomless pot of coffee that was drunk straight or mixed shamelessly with cocoa mix. And for dessert, what else? S'mores! All of this laced liberally with each person's convincing arguments for how to achieve the perfect degree of doneness in a toasted marshmallow. There were both joys and tough days for me. Before we left, Hollin was teary, wishing to go. "Mama, suppose this is your last camping trip and I missed it?" She drove up Thursday with baby Lindi, arriving early for breakfast and staying into the afternoon. I had one morning when I felt so awful I really wondered if I just needed to hitch a ride back into town and get admitted to the hospital. Medicine, time, and calming messages to myself helped override that episode, but I felt rough and had convinced myself that this whole camping trip was a supreme manifestation of my arrogance and just plain foolhardy. It took a while to talk myself down from that tree. I had a clear and illuminating moment in the midst of that craziness and actually feeling sick, however, in which I was absolutely aware that I just wanted my mother. That's a new one for me. It was positively primal. I could have yowled it to the hills. I fought pain and shortness of breath all
week, with a clear and searing pleural rub when I was lying down,
which was definitely worse in some positions than others. It
was bad enough by Thursday morning that we decided to come back
a day early, just in case I needed to have my chest drained before
the weekend. All that aside (and I can set it all aside), the week was just wonderful. First of all, it was such a pretty place. The mountain we were on is about an eight-mile drive from the highway, deep into the forest. It overlooks the Ocoee River and lake, the area where the whitewater rafting events took place at the Summer Olympics several years ago. Our camping site was forested and quiet. We set up our little tent village and enjoyed watching the three dogs from our families play and play and play. Our Gracie was played out, probably for the first time since she left her littermates. She had a ball. When she was tired, she would insinuate her way into one of our laps, still convinced that she's a small dog. As always, it was great to be with Steve's daughter and her family. Spending extended time with our oldest grandkids was also precious. We all laughed a lot. The younger grandkids also were there in various combinations. Chris and Jen's boys, five-year-old Kistler and two-and-a-half-year-old Avery, were there over one night. Avery is like a little bottle rocket, shooting from place to place, so his presence required one-on-one watching, but he sure had fun, sporting his backpack and saying, "pack-pack, pack-pack!" Kistler acted like the seasoned camper that he is since last year's trip. We had one big adventure, which all trips should have. Wednesday morning, either Avery or the dogs or both stumbled into a yellow jackets' nest. I was still alone in our tent but I could hear Ron hollering, "Get the kids and the dogs! Run! It's yellow jackets!" followed closely by the loud crying of children getting stung. Gracie ran right for our tent. I opened the flap for her, not realizing that she was bringing about 25 yellow jackets into the tent with her. She was thoroughly stung. I grabbed her by the collar and held her still and sat as still as I could. The yellow jackets lifted off her and headed for the lightest fabric and sunny spots in the tent. When Ron sounded the all-clear, I let Gracie leave the tent and began killing them. We finally had killed the last of them by mid-afternoon. Gracie had an eye swollen shut from stings. The kids each had one sting and Ron got the worst of it. For me, some of the sweetest parts of the trip were watching Steve enjoy the outdoors and being with Naomi in some concentrated one-on-one Nanny/Naomi time. She slept in our tent so I got to do the bedtime stories and prayers and all the nighttime talk. I got to watch her sleep to my heart's content. She's so beautiful in sleep. We had thought when her mother got pregnant that the world was over, but this child has been such a total gift to us. She's a good little camper, too. We got to shower together and made up silly and irreverent bath songs, laughing hysterically. Steve and I cuddled and cuddled through the chilly nights, listening to the wind and the owls. He propped me in whatever position I could find reduced the pain in any way and slept with hands tangled in my soon-to-be-gone-again hair. We talked and laughed and enjoyed each other. Wednesday night, the temperatures dropped to around 40 and I awoke to see Naomi with her covers off, all drawn up like a little turtle, all appendages tightly tucked underneath her. We hauled her into bed with us and enjoyed that sweet child softness and breath as she sank into our warmth for the rest of the night. It was a good time.
"Into the Woods" - Saturday, October 6, 2007 When I found that I could not start my clinical trial under October 22, I looked at the calendar, all blank and empty with possibility, and thought, "So, what can we do for fun?" We've been so crushed this summer and especially these recent weeks by the weight of my illness. We just need a little relief. It's October in the Appalachians! Let's get outside! Pour a little sunshine on this pale skin! Breathe as deeply as we can of fresh air! Let's go camping! Now, for some people, this is their idea of hell. Despite (or perhaps) having been raised in a family that camped regularly and often, Steve's son Chris detests camping. The dirt, the bugs, the inconvenience of it, the lack of power for his laptop - all of it contribute to making this one of the least relaxing things in the world that he could contemplate. His wife, Jennifer, is super-organized, loves beautiful things, and is a clean freak. This is not her cup of tea either. Then there is the dirtball contingent in the family: all the rest of us. Last year, during the same week of Fall Break,
we all went camping. It was Hollin and her family, Laura and
her family, and us. October in Tennessee is celebrated with festivals,
train trips through the leafy glory of autumn, "Color Cruises"
on the river in the balmy days of "Indian Summer."
Last year's weather took a crazy left turn and caught us all
by surprise. The first morning we got up at our campsite, the dishwater from the evening before was frozen solid in the dishpan. The temperature was 22 degrees. Now, this was not a complete surprise. I had just spent the coldest night of my life in a tent. I'm adventurous and hardy, but this was just miserably cold. At about 3:00 a.m., I said to Steve, "I'm frickin' freezin'! We've got to unzip these sleeping bags, cuddle close together, drag the dog in here with us, and pile the sleeping bags and every other piece of clothing we have on top or we're gonna die!" We did all that and it got bearable. I remember that our aging and infirm Springer Spaniel, Lizzy, was so cold that even in her troubled sleep, on each exhalation, she had the fine tremor of a bone-deep shiver. Well, we all adjusted and enjoyed the days, which crept up into the upper 40's to around 50. It was sunny, thank God. I'm not a quitter, but if it had started to rain, I would have been outta there. The nights continued to be brutal, but as soon as the sun dipped down then set, we huddled around the campfire until bedtime and then all adopted whatever warming rituals and routines we had devised. We ate like kings, exulted in the staggering beauty of the fall colors, and had the grace one morning of five deer running and leaping right through our camp.  Camping is a wonderful experience, especially
for children. Back to Chris and Jen for a moment. Their oldest
son, Kistler (who was four at the time), came up for two days
and one night. This was about two days into the trip, so we were
all really grubby by the time he arrived, covered in the fine
layer of soot and dust that filters down on everything. Kistler's
dad brought him up to our campground. Mom had decked him all
out, ready for the weather. We could see him making his way through
the trees toward us, grinning with anticipation, his little monogrammed
backpack in tow. He looked adorable in a beautiful sweater and
matching Gap fleece-lined cap and mittens. He was so excited
to be there. He and his cousin After his dad left, Kistler's Aunt Lulu (Laura) swept him up in a big hug then set him down and got down at eye level. "Kistler! Guess what? You're not going to take a bath tonight!" Kistler looked at her suspiciously. "No! I mean it! No bath tonight!" A little smile started then he said to her, "Aunt Lulu, you're talking so silly!" She finally convinced him and he was staggered at the possibility. Within a few minutes, Uncle Ron introduced another novel concept. "Hey, Kistler! Do you need to go to the bathroom after that long ride with Daddy?" "Yes," he answered. "How about you come pee in the woods with Uncle Ron?" A look of wonder spread across Kistler's face. "Yeeeaaahh!" he roared with delight. That evening, as marshmallow goo from S'Mores dripped into the fleece of Kistler's beautiful little cap, I thought, "Jen may never forgive us, but Kistler will never forget this!" So, this year, we're headed east to the Cherokee National Forest, which straddles Tennessee and North Carolina. Hollin, Rodney and the baby can't make it, but Naomi is going with us. Laura and her family are coming. The long-range forecast looks good, maybe even a bit warmer than is usually seasonable. Kistler will come up again for a day or two. We'll take all the family dogs, including our new intractable puppy, Gracie. It will be a sniff-fest for her. We hope to get some fishing in this time. I'll get to go to sleep to the sound of the wind in the trees. I'll get to see the stars thrown across the sky in profusion, cold and white against a black night sky undiluted by city light. We'll make new memories and reconnect to our own souls and to each others' out in the woods. I remember a song from my Girl Scout days, which was my favorite at camp. At this point in my life, it means even more. I'll be humming it from here all the way to the Chilhowee campground.
"One Foot Here, One Foot There" - Thursday, October 4, 2007 One of my dearest friends is a survivor whose remarkable last several years have defied the odds and expectations of science, doctors, and those of us who love her. She has had brain mets from breast cancer and then spread to lungs, the other breast, chest wall - the whole ugly Magilla. She was young when diagnosed, from a family whose pedigree was riddled with breast cancer. Her children were also young when she was first diagnosed, and she has been determined to raise them. Her oldest is now a senior in high school. She was out of treatment options a couple of years ago, in unremitting pain from headaches due to the brain mets, and really suffering. At that time, after thoroughly chewing it over, she entered hospice. She rapidly became a hospice "groupie," enthusiastic about its services, grateful for the pain control that she gained and for the counseling and support to her and all her family members. Steve and I attended a party for her two years ago this November that was ostensibly a fund-raiser and celebration but which was also a thinly-veiled farewell party. She decided to forego her pain meds the day of the party so that she could enjoy a glass of wine and boogie with the best of us to the DJ that was part of this swanky gala. One of my happiest memories is of doing the Electric Slide with her. She executed the steps with a sassy and sexy dip of the hip, holding onto her dressiest cane. We all hoped that she would make it to Christmas. This was 2005. This past August, two years later, she looked up and said, "You know, it doesn't look like I'm going anywhere else soon. I think I'm going to take a leave-of-absence from hospice." Now, this is a brave move, heavily laden with symbolism and infused with an almost unnaturally high level of hope, especially for those of us standing on the sidelines and watching her. It's hard not to point at her and say, "See? She got well enough to leave hospice, so you just never know!" I've done my share of pointing and exclaiming, too. When she found out about my recent series of bad omens, we began a new conversation in our friendship. The other night, in our wonderful therapy group for women with advanced breast cancer, the conversation continued. She has been back in treatment and she doesn't know yet how well it's working. I'm coming out of my most recent health crisis with news today that I've got more build-up of fluid on my right lung, and I'm also about to enter a clinical trial. She and I are facing similar dilemmas, each of us straddling a threshold emotionally and figuratively, one foot in one world and one foot in another. When I was shot out of a cannon two weeks ago into the land of "Oh-my-God-I-could-die-soon," I spent a lot of emotional and spiritual energy adjusting to that reality. I'm finding it hard to leave that behind and move back toward "Gee-maybe-this-new-drug-will-work-and-I'll-have-more-years-ahead." I don't yet know how to carry my hope (which I am good at fostering) and still acknowledge the fact that I'm getting seriously sicker. If I could think of anything at all familiar about this feeling, it would be when I left my first marriage. I had just enough courage to do it - barely. I felt like I could muster all I needed to go out on my own one time, but I didn't know if I could ever, ever do it again. This feels something like that. If I don't hold onto the possibility - maybe the probability - that death is closer, will I be able to marshal the energy again to face it anew? When we were talking together about it earlier this week, three of us who have dealt with mets for a long time were sharing how we coped. One of us is so well integrated in how she deals with bad news and hard possibilities. I love this about her. She's good at just not going there until she has to. She really can put it all up on an imaginary shelf and not peek into the box - let alone open it - unless and until it's time. She remains scientifically extremely well informed, but the emotional aspects of bad possibilities stay on hold until they are a reality. Man! I wish I had a little more of that in my basic make-up. My way of coping is usually to get as much information as I can, to immerse myself in all of it and sift through all of it, and then I feel as safe as I can. I've spent the past few weeks reading about superior vena cava syndrome (which is apparently what I had when my face puffed up from the obstruction my cancer was causing), pleural effusion (fluid in the lung cavity), and the theory and preliminary work behind this new experimental drug I'm about to go on. It has taken a lot of psychic and actual energy to do this, but it's helped me. I've built tremendous confidence in the new drug I'll start on later this month. I even have been able to close out and walk away from some of the pleural effusion information when it got too grim. But I'm keeping one foot firmly in this new land, aware that things can go bad quickly. I know that there is always an emotional cost to relocating, even when the move can be the best for you. I'm reluctant to lose the emotional equity I've built up in my recent foray into new territory. It was like earnest money, spent with intent from emotional coffers that felt nearly depleted. My friend who is currently on leave from hospice also admitted that it's hard to move between those two places, between hope and realism, between actively fighting for your life and actively working on accepting the inevitability and imminence of your death. She considered her decision to come out of hospice for a long time. She had done a lot of work with her mind, her feelings, and her soul in preparing for death. It was a huge step to decide that she wanted not only to get treatment to relieve her symptoms but even to move beyond that back into active treatment in hopes of changing the course of her disease. Deciding when and if she's returning to hospice is just as hard. It'll flat wring you out. So, I find myself, too, with one foot on each side of the equator as I navigate this new page in the atlas of my illness. The seasons of my life are very different on each side. I'm familiar with one hemisphere, filled with hope and future plans. I've now also had a thorough introduction to the other one, which is rooted in the reality of death and the need to step into the process of transition, hopefully to have time to move through that part of the journey, awake and aware. Suddenly, I am reminded of a poem by Rumi. I remember imagery about souls moving between the two worlds and something about a doorway. When I go to look for it and then find it, I laugh out loud. It's the one I already chose for the top of my blog page! It just never meant to me what it does now. There's the line about people going back and forth across a threshold! It never resonated with me the way it does now. I find comfort in it. I hold onto it like a talisman. Maybe I just need to rest in it and not worry about which place I am. Both worlds are with us. Whenever it's time to go there, I won't be alone. Just walk it, Debbi.
"My Friend, Elena" - Wednesday, October 3, 2007 I have a friend named Elena. She's one of
those friends you don't see often and that you've really never
spend much time with, but someone with whom you have an intense
heart connection. You know the kind. It's the chance encounter
on an airplane or someone you connect with only now and then.
I've had the blessing of a few of these special friends in my
lifetime. Once at the beach on a golden October day, I was next
to the water when a woman ran up to me, excited, pointing out
from the shore. "Look!" she said, eyes shining with
delight. "Dolphins!" We watched those dolphins play
all afternoon and shared the wonder and joy of it. We told each
other our life stories, unadbridged. We wrote to each other a
couple times a year for about 10 years and then lost track of
each other. I've never forgotten her. Her name was Stephanie
and she lived outside New Orleans. My heart surely remembered
her during Hurricane Katrina. Elena is like that to me, an occasional heart-friend. She is a nuclear medicine tech in the hospital where I get my diagnostic work done. She's the one that shoots me full of technetium or whichever radioactive isotope for scans. I first met her at least six years ago, when I began dealing with recurrence. I felt drawn to her immediately. First of all, she has these beautiful eyes that just engage you completely when she speaks to you. Then, it was her speech. She has the soft, mouthful-of-something-sweet accent of a native Russian speaker. I spent some of the happiest days of my life back in the summer of 1991 in Russia and Ukraine and remember the incredible warmth and generosity of the people I met there. Elena is all that and more. She emigrated from Russia in the late 1980's. Her husband had come to the US already and their story is a tale in itself. She ought to write a memoir about her own life. When she came to the US, she knew no English. She began working as a nursing assistant and working hard on her English. She ultimately ended up as a nuclear medicine radiation tech. In Russia, Elena was a nuclear medicine physician. She headed up a large department in a big pediatric hospital in Moscow. When she came to the US, her lack of English and the requirements of getting a license to practice medicine here were daunting. She had a life to live and a family. Her mother came here and Elena was in charge of her care. I asked her one time how it was for her not to work as a physician now. Although much of her job must have been administrative in Russia, she was a doctor. I know techs that say Elena has taught them so much. She shrugs modestly with a smile. "I am happy. I like working with the patients. That is my love." Believe me, that's just where she belongs. My encounters with Elena have been sporadic, sometimes as infrequently as once every year or year and a half. But every time, I feel this sympathy and sense of recognition flow like a current between us. She is always interested in how I'm doing and concerned about me. I always feel calm when in her capable hands, even when the outcome of what she's testing might portend bad news again. When I saw Elena back in April for a PET/CT scan, she bought a copy of my book. Although her English is now excellent, I thought perhaps she bought the copy out of support for me more than anything. I know that for a hard-working woman like she is, leisure time might not be best spent reading something that isn't effortless, like it would be in her native language. When I came back recently to get a bone scan, she greeted me warmly as always and then said that she had read my book. We talked about it. She had liked it. She had found the poetry hard to understand. "I don't want to offend you, but for me, poetry is like I don't know how to say music!" I acknowledged that the poetry in my book didn't have meter or rhyme. We both laughed. I went back and reread Pushkin and danced along his beautiful lines, understanding Elena's deep resonance with that form. We agreed that poetry comes from a very different place than prose and always suffers in the translation. We reflected on our odd friendship. She treats me absolutely professionally, and yet, there is a friendship underneath it. I know that she cares about me, and I know she feels my love for her as well. We dabbed a few tears away as we talked. She gave me the gift of a few words I will always treasure, as she reflected on having read the book. "I don't know what to say. Here I am, just a girl from Russia, and you give me the privilege of entering your life completely through your book. What an honor!" No, Elena, you have given me the privilege of knowing you and have always given me your hand in times of fear and uncertainty. It is my honor.
"Gestures of Love" - Sunday, September 30,
2007 Today was the Komen Race for the Cure in Chattanooga. It's always a heady day, full of emotion, full of amazing female energy, full of a spirit of solidarity. The breast cancer grapevine in Chattanooga is really more a hotline, and I'm grateful for that. I never mind having news shared, knowing that we all step forward to help each other. My most recent setbacks on the health front were mostly already common knowledge as we gathered on the steps of the McKenzie Arena on the UT campus here. I was swept into so many hugs. I'm still on such an adrenalin high from all the positive feelings that it may be hours before I'm ready to sleep. It was a day full of so much love. My children, their spouses, and my grandchildren came and walked (and rolled in various strollers). Friends and members of my Baha'i faith community walked. I was so shored up. In the midst of this sea of affection, there are still a couple of unexpected gestures of love that were icing on the sweet cake of this memorable day. First of all, there was Steve. He's exhausted
from three jobs and the stresses of the past few weeks. He's
out of shape, largely owing to that and to the uncertainty of
our schedules that travel has demanded. He's got emphysema (which
he ruefully owns, even though he quit smoking, thankfully, three
years ago). Despite all of this, the man spray-painted his hair
pink, donned a "co-survivor" hat I bought him although
he despises ball caps, and pushed me nearly 3 miles in a wheelchair.
He was determined to do it. I could hear him wheezing and huffing
behind me. Our 16-year-old granddaughter, Jesse, elbowed him
out of the way on a few inclines toward the end, but he mostly
did the duty. Next, there was my son-in-law Rodney. I love this guy. He's very reserved and I think that our loud, demonstrative family has been an adjustment for him, but he's taken to us. When he heard that I was acquiescing to being pushed around the 5K course in a wheelchair, he got all bright-eyed. "I'm gonna decorate your wheelchair!" And boy! did he! He had a vision of pink excess, just barely within the margins of not-yet-tacky, and he brought that vision to reality. He spent a long time on the decorations, threading silk pink daisies through the spokes of the wheels, attaching pink streamers to the handles, cutting out pink, foam ribbons to glue to flat surfaces, and creating a pink slipcover of sorts for the chair part. It was great! Strangers were stopping to snap pictures of it. I rode in style. It was such a nice way for him to tell me that he loves me. Finally, there is my daughter Hollin. She
and I came through such tempestuous years when she was an adolescent.
I remember writing in my journal one May, with tears falling,
that I knew she wouldn't give me a Mother's Day card, so estranged
and hostile was our relationship at that point (and she didn't).
She offered me just about every kind of rebellion any child could
muster. At one point, I really feared that our relationship was
beyond salvaging. At my request, she agreed to come into therapy
with me. We worked for six months, every week, on the messy stuff
hanging between us. She showed me her integrity, her courage,
her honesty, and her insight as she did her share of the work.
When she got pregnant with Naomi, I remember that I was scared
for her economically and in terms of what her immediate future
might hold, but I knew she had the moral stuff to raise a child
and that she would rise to the demands and responsibility. This last gesture of love for this Race for the Cure occasion, offered by Hollin, was totally unexpected. Sometimes, how we are shown love is in ways that might have been unimaginable to us before, but which dazzle us with surprise. Hollin came home last night from a "date night" with her husband, their first since their second daughter, Lindi, was born in June. I had been so happy for them to have a night out together. They spent it in a very different way than I thought they would. They spent it at a tattoo place, as Hollin got a tattoo on the inside of her right leg, just above the ankle. Because I haven't had a history of being enthusiastic about tattoos, when she came home and first showed this butterfly to me, I really thought she was joking and that this was just one of those temporary ink transfers. I kept waiting for the punchline and for her to get me, for me to be really "punk'd." Then, as she pointed out to me that the body of the butterfly was a pink breast cancer ribbon, I realized that this was for real. Her face crumpled into tears and I felt awful. My reaction wasn't what she had expected or hoped for, but I truly had not seen initially what this was all about. "I wanted to do this, Mama. I've been planning it for over a month. I looked all over the Internet for ideas. I wanted something permanent and I wanted to cover up the little tattoo that I did when I was 13, just to get you. Remember that one?" Oh, yeah. I remembered that one. I was crying by now, too. "I'm so sorry, honey. I didn't see. It really is beautiful. I'm crying just because I know you did something that had to hurt for you to do it." "But, Mama. You've had to do lots of things that hurt. This wasn't much." Now we were really bawling. She went on to say that she had wanted to get it done before the Race for the Cure and then when I got so sick a few weeks ago, she wanted even more to get it done, not to wait. Probably one of the things that moved me most about this was when she said, "I did a butterfly because neither of us are caterpillars anymore." It really is a beautiful tattoo, so pretty that I'm already scheming to see if there is some way I can get around anticoagulants and low white counts on the horizon to have a companion one done somewhere on me. I'd love to have the other half of a matched set. Sometimes love comes at us in unanticipated ways. I'm looking for the lessons in these gestures of love. Was the Christ Child looking for frankincense? Did Mary or Joseph need myrrh? Probably not. And yet two thousand years later, we still sing of these gifts, don't we? Sometimes the perfect gifts are laid right at our feet. I know. It's happened to me.
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Naomi
(who is one year younger) were soon engaged in play and exploration.
As I recall, Naomi was arrayed in striped flannel pajama pants,
a navy sweatsuit jacket and her Peepaw's cowboy hat.
