Cancer in the Corners

After completing a cancer treatment, our local oncology department has a tradition of having the departing patient ring a bell to signify the end of an arduous journey. Michael just wanted to get away and head into his old life. I don’t think he really believed that this radiation had cured him and he was anxious to get to get back to school, feeling like he wanted to attack all the work that he so very much wanted to do. “I’m not done yet, he’d say.” But he rang the bell anyway. He was also given the option of saving the hard facial mask he’d donned thirty times. That went straight into the garbage. He said he never wanted to see it again and would never use another one, ever. I think it may have been the first time he’d admitted how incredibly hard it had been for him to be bolted underneath that thing all those days. I thought it was positively medieval although I understood its real purpose.

We were now in the waiting period between treatment and the next scan. During the fall of 2012, the worst side effects of the radiation diminished and Michael regained weight and strength. Always an avid exerciser, he went back to running and biking.

Those hard, scary months between May and August receded into the past, rapidly replaced by what had been our normal life for so much longer. But there were subtle differences that we were aware of every day. Now cancer was lurking in the corners of our world, every day. I suspect there are some people who would go forward feeling that they’d put the trauma behind them, papering over the bad memories as fast as they could. With a diagnosis like Merkel cell, that was virtually impossible for us to do. We knew there had been metastasis, albeit a small one. But that fact was impossible for us to completely ignore. Michael, always the quieter of the two of us, was better at acting like our world was unchanged. Not me. As long as we’d be living on a three month check-up routine, both with his surgeon and our dermatologist, I was like the dog with the bone, gnawing away at this mysterious invader, trying to get a handle on what might lie ahead for us. I was already undone by the first misstep in our road, the fact that Michael could have swapped his dermatology appointment for mine which had been over a month earlier. I’d made the offer to him but he didn’t realize that anything scarier than melanoma was out there.

His lesion was small and very different looking than melanoma. When we learned about MCC, one of its benchmarks was the speed with which it grew. I’ll always wonder if an extra month would have made the difference in stopping the cancer from exploiting those 2 little lymph nodes out of all 66. I have to smack myself in the head and say, spilt milk. Can’t go backwards, only ahead. After that early quick research that I’d done after the initial diagnosis, my studying took on a whole new life. An English major, I hadn’t spent much time immersed in science although I did love biology and the natural world. Because my mom had been sick so often in my life, I’d learned a lot about what can happen in our bodies and had gone through breast and bladder cancer, respectively, with both parents.

Knowledge was my antidote to fear and anxiety. This MCC beast was no garden variety cancer. So I buckled up and took the plunge into the real science you could dig for on the Internet. I used PubMed a lot to read about studies, experiments and theories. I read about clinical trials and joined groups whose topics were neuroendocrine cancers. I dug through every website that referred to Merkel cell. When I didn’t understand the scientific language, I looked it all up. Surprisingly, I started getting comfortable in what early in my life, had seemed an inaccessible part of the world. I also saw the names and locations of the doctors and research facilities that popped up regularly, the people who were focusing on Michael’s disease. This was a delicate time for us. Michael moved slowly in life while I tended to zip along fast. The amount of information I was accumulating would consume me as I cast about for answers. I needed to be careful not to overwhelm him and his very different approach to this nagging fear we had.

What seemed to work best was when I would come up with some practical things for him to do, like taking immune-boosting supplements and trying to get him to compromise about the crazy long hours he worked. That was a big issue between us. He was so in love with teaching that he worked every night until midnight or one a.m. and then got up at 6, generally arriving at school by 7 and staying until 4 p.m. He’d come home, take a short nap, eat dinner and start all over again. I argued with him about this schedule which I thought would be arduous for someone half his age. But he was stubborn and relentless and I attempted to keep my mouth shut to avoid stress between us. At least when I could. I knew he was mustering his resources internally for whatever lay ahead.

Meanwhile, fall moved along. He had a check-up in September and then the first big deal, a PET/CAT scan scheduled for November 8th. Having had no systemic treatment, this was scary, as any random cells that could have moved through his lymphatic system or bloodstream would have had an opportunity to grow. Such anxiety. We had to wait a few days for the results which is really hard. Life feels so out of control which it always actually is, but this extra load is heavy. Eventually the surgeon himself called with the results, elated because the scans were clean. We were so relieved and yet, very cautious. MCC tends to return in the same vicinity in which it was first detected. Michael was being examined in his head and neck area. But he had a 6’4″ body with lots of room for nasty cancer cells to hide. I was not content. But for this time he was okay. He and I were learning to live in our moments, rather than planning too far ahead. We had our usual family gathering for Thanksgiving, Michael’s favorite holiday. We’d had to cancel a trip to Sanibel Island that we had planned for June, 2012, right after his diagnosis. We rescheduled it for June, 2013.

In December, 2012, we headed to Starved Rock for what had become an annual holiday trip for us and our kids. I don’t recall who went that year but we did and we savored every moment, from the hiking in the woods, to our favorite room in the lodge, to the big dining room fireplace and the fudge. We swam in the big pool encircled by tall glass windows so you can watch the snow fall while you’re being beachy. We lolled in the hot tub. We came back to share our annual New Year’s Eve dinner with our family and friends at Biaggi’s boisterous restaurant. And then it was 2013.

Michael continued his 3 month checkups. I was still taking care of our grandson, so I didn’t join him for most 3, month appointments until a meeting in June, 2013, which included our entire medical team, the surgeon, the oncologist and the radiation oncologist. This meeting was an annual event provided for any patient who was still negative for disease after treatment. Interesting cases like Michael’s were routinely discussed at our clinic’s tumor board so that new perspectives and ideas could be shared. We had a new, younger radiation oncologist at this confab, as our original one required a kidney transplant and was off with his own issues. I’d had a whole year to do research and I walked into that room loaded with ideas and questions. Michael let me run point on this because I do well in confrontations. The conversation kicked off with our surgeon being pleased at Michael’s stability and progress. We even had a letter from our Dr. Chris Bichakjian in Michigan who felt that since Michael was a year out from his initial diagnosis, his odds of surviving MCC were as high as 70%. But then there was me. I couldn’t understand the protocols for treatment. To me, a protocol meant that if you employed a series of measures, you could expect a cure, an absence of disease. But MCC was incurable. To me, that translated into the fact that if you were lucky and fell in the center of a bell curve, you could have certain expectations. But that’s not how cancer works for everyone. I was frustrated that Michael hadn’t been scanned since November of 2012. I asked the team how often melanoma patients were given PET/CT scans. They responded with “every three months.” If Michael’s cancer was so much more lethal, then why wasn’t he being scanned that frequently? Their answer was that only one post-surgical scan was recommended by the protocol. Around and around we went. I noticed that the new young radiation oncologist was sizing me up. His name is Dr. Sinisa Stanic. He finally proposed a compromise, a follow-up scan in November, 2013, a year from Michael’s last one. He said, let’s do this for peace of mind. I wasn’t exactly happy but this was better than nothing. I realized that doctors like staying in their proscribed lines. They need them to keep things stable, to give themselves a structure in which to manage what is basically the wild west, the individuality of a patient’s response. I’m always pushing outside the lines, casting boundaries aside. I think that’s what advocates should be doing. In any case, we scheduled scans for November 8th, 2013, an exact year from the last one.

School ended for Michael and we took off for Sanibel, at long last. I had the summer to care for my grandson who was scheduled to start day care in August at just under three years old.

He was ready and I was grateful to have been able to complete my commitment to my kids. In the meantime, my daughter was pregnant again and I would have a few months off before becoming a caregiver again. I had moved my mom into an assisted living facility and she was as okay as she could be.

I wished living together had worked out but the combination of everyone’s needs, including mine, was just too much. After our Florida trip, our whole family released our collective breaths and tried to enjoy being together with our relative good news. The next big event would happen in November. I was still in my mental trench, studying, learning more.

Michael was in his summer mode, exercising, gardening and tweaking his classes for the following year. Our relationship was strong and intimate, peppered by our life-long issues of different style and speed modes, but resilient. We made a good team and we moved forward.

First Treatment Protocol – Radiation

We returned home from our mini-vacation to prepare for what will define most of the summer of 2012, Michael’s radiation. After stepping out of our intense romantic bubble, we are now back on earth and realizing that we are still at the beginning of the cancer road. Home life is complicated. My elderly mother is living with us and as a cancer survivor herself, she is having a hard time understanding why we seem so dark about the future. After all, she is living proof that cancer is survivable. She isn’t remembering my dad’s barely four month bladder cancer experience, four months from diagnosis to death. This is partly due to her age and partly due to her feeling marginalized by the new situation. I realize that our well-intentioned cohabitation plan is going to change. I always thought I’d be able to keep my parents at home. But life is unpredictable and the choices aren’t good.

I’m also committed to caring for my baby grandson. He is a joy but also an economic necessity. I retired early to care for him, with that choice predicated on my kids’ paying my expensive COBRA health premiums instead of day care fees. I’d also taken an early retirement penalty on my pension. We felt like losing gamblers, which in essence, we were. Those were the practical daily life issues. Then there were the cancer ones. After our brief euphoria at being told there was a chance for Michael to survive MCC, we’d taken a step back and were soberly acknowledging that the survival rates for this monster were very low. Michael was girding himself for both the psychological and physical demands of his treatment. I was looking for a place to put myself and landed on the role of researcher.

I decided to find out everything there was to know about this disease, in terms of how it operated and what was being done to treat it around the country and the world. I was lucky to be able to harness my intellectual capabilities and direct them toward science for the first time in my life. I started finding about recent studies and publications, along with new treatment approaches. So began our new life. Michael had to be prepared for his 30 rounds of radiation. He had to see his dentist to make sure his teeth and gums are in good shape as the treatment could weaken both.

Then the first step for his process was the creation of a mask that is used for patients having radiation to the head and neck. A soft damp piece of mesh is laid over the whole head with holes left for comfortable breathing. After 15 minutes or so, the mesh hardens and molds to the face. Michael will wear this mask every time he has a treatment.

It will be bolted to the radiation table to ensure that he won’t move during treatment. As a claustrophobe, my body lurches in response to what will be a daily period of his life every day for 30 days. He will steel himself for it while in my mind, I’m thinking I couldn’t do this without sedation. Next there is simulation. We’ve learned that the radiation oncologist is flanked by a team of physicists and techno geniuses who devise a mathematical three dimensional field that directs the radiation rays to very specific targets while sparing as much normal tissue as possible.

We get to see the plan which resembles a blueprint and are then handed a schedule for the next six weeks. And so it begins. For the first two weeks, things go along without much noticeable change in Michael. Then fatigue begins to assert itself. Naps resolve that initially. But soon more symptoms emerge. Michael has lost a major salivary gland and sixty six lymph nodes. The radiation is frying the area where all that surgery took place. His saliva begins to thicken and become ropey. Swallowing becomes more difficult. His taste changes and his appetite begins to diminish. That means more exhaustion. I’ve been finding different supplements which are being used in clinical trials to support the body’s immune system while being treated for cancer. Soon Michael is taking an array of them which include mushroom compounds, herbs and vitamins. The oncologists have no objection to these. I begin to think that there is so much vagary in cancer treatment that unless you ask about adding cigarettes as an adjunct therapy, they figure anything is worth a try. There’s a definite psychological advantage in feeling proactive and although Michael grumbles about the number of pills he’s swallowing daily, I think he feels, along with me, that we want no stone unturned in our efforts to support his life.

We try to do normal things. We go to the movies and spend time with our family and friends. That gets harder as his interest in food dwindles. We both become keenly aware that so much socializing takes place around meals. A sense of isolation sets in. This will be an issue I have to contend with for a long time. Michael is friendly but is not intimate with many people. I always tended to be more social but have already made the decision to stay glued to Michael’s side. I’m already down the road imagining his absence. I don’t intend to have any regrets about being away from him while he’s on this planet. We are lucky to have spent decades together and to still be powerfully attracted to each other. We stay intimate. The connection helps us both stay grounded in the midst of all the fear and uncertainty. Michael starts losing weight. His bloodwork looks dicey and we discover that he has an inadequate platelet problem that was occult until this illness occurred. More worries.

Then the more severe responses to radiation begin. Michael’s tongue and mouth are sore. An apothecary in a small town nearby compounds a rinse called Miracle Mouth which soothes some of the burning. Sometimes it helps and sometimes it doesn’t. Then his skin begins to burn, blister and peel. Necrosis sets in which you can identify by the discoloration which takes place. The colors range from dark red to a sickly green and the skin peels. Moisturizers are supplied but the fact is that the visual manifestation of the treatment indicates what’s happening internally which is the desired goal. Normally, I’m not a weepy person but one morning, I was passing by our bathroom and the door was partially open. I saw Michael carefully trying to clean his face, gingerly patting his cheek and trying to carefully remove the dead strands literally falling off in his hands. I went around the corner and cried. Watching him in this altered capacity hurt me. And the helpless feelings that went along with it were hard to bear.

While we coped with all these changes there were other unexpected surprises. Looking back, l can’t say why they were unexpected. Radiation equipment is just that – equipment. And as with any other type of equipment, shit happens. Michael would have an appointment scheduled for one o’clock in the afternoon. At 12:15, he’d receive a phone call telling him that his machine was down and that the technician who could fix it was out of town and that the day’s treatment was canceled. Frustrating, but not much we could do about it. On one of those days, we went off to a big box store as our refrigerator had decided to reach the end of its unnatural life. While trying to make a choice about which new appliance might have a shot at lasting more than a few years, Michael’s cell phone rang. The technician had managed to repair the machine and could he get there in ten minutes to complete the day’s treatment? At that moment, our son- in-law miraculously appeared in the store so Michael ran off as quickly as possible to try to stay on track with his treatment plan. That happened several times, tossing additional anxious moments at us during our life’s most anxious time. There was no one to blame – a few minutes of shouting and swearing had to be enough to release our tension.

Eventually, the six weeks of radiation ended on July 27th, 2012. Michael was thin, tired, sore and grouchy. To get stronger, to get back to exercising and back to teaching which was due to begin in mid-August, he needed nutrition but was having a hard time eating. I remember a big family barbecue at our daughter’s house, watching him select what in a normal time would’ve been a good sized portion of food. But he couldn’t manage it. In the midst of the babble of voices in the room, I could feel his irritation and feel his feelings while I pretended to be normal. He went home early and I joined him soon after he left. I was worried about the stress of a new school year and was trying to talk him into taking a little more time off. But Michael was determined to go back.

He’d come to teaching in his early fifties after spending 27 years co-owning a music business which brought us great fun and lots of stress as music became available over the internet and CD’s were cheaper in big box stores like Best Buy. When Michael went back to school to become a teacher and ultimately got his master’s degree in the teaching of US History, he’d found his true vocation. He didn’t want to miss a minute of it and most particularly, a class he’d designed himself, Modern American History through Film and Music. I was thinking a lot about the importance of living in the moment, learning to waste no time, to make all our moments count. So despite my fears, I decided to support Michael’s decision to go back to work. He was mentally strong, stubborn and proud, the same person I’d been with my whole life, before MCC changed our lives. So off he went. He’d begin his every three month exams soon and would have a PET/CAT scan in November to see if it appeared that the cancer had been eradicated by the surgeries and radiation.

We were looking for normal and determined to find it wherever we could. Michael and I each went to school, he to teach and me to my new obsession, becoming more knowledgeable about his evil mutation. We were in tandem and moving forward.

The Second Opinion

We are on the road, headed for Ann Arbor, Michigan. The drive will be about five and a half hours. Michael and I have always gotten along really well on road trips. From the beginning of our relationship, we had this easy rhythm that was a part of the organic comfort that was established the first day we met. This Merkel cell(MCC) cancer diagnosis has shaken us, but the ties between us are strong. The day is sunny and mild, the day before Michael’s 63rd birthday. We would stay in a hotel in the city overnight before having our meeting the following morning. We listen to music, wondering what will happen at our appointment with the specialist who will analyze Michael’s case case files and surgical reports to confirm whether the treatment plan recommended at our local clinic is the right choice. The past few weeks are a blur, a curious combination of breakneck learning, a cancellation of a trip we’d planned following the end of Michael’s second semester of the school year, and a high finance dance as we are confronted with the economic realities of a cancer diagnosis. We have gotten past the tip of the MCC mountain and are now working our way through the practical realities that go along with disease management. We had trip insurance for our vacation so that’s lucky. Michael has enough sick time to miss the last few weeks of school without losing a paycheck. Fortunately he chose to get his nine months’ school salary paid over twelve months. Our health insurance has a hefty out of pocket maximum but at least there’s a ceiling. A group of our oldest and closest friends have pitched in with some cash to send us on a week long getaway immediately following our appointment in Michigan. We’ll head to a cabin on Kentucky Lake for a much-needed reprieve before starting whatever treatment lays ahead for Michael.

We are going in cold to our appointment in Ann Arbor. There were two doctors who were considered the best choices for our second opinion. We picked the one who was available first. Looking back, I remain awed at what turned out to be our dumb luck. Life can be so remarkably random. The doctor we chose was Christopher Bichakjian, a young man in his forties. He had,what to our inexperienced eyes, was an impressive resume.

This is his current title. Interim Chair, Department of Dermatology Professor, Department of Dermatology Chief, Division of Cutaneous Surgery and Oncology Director, Multidisciplinary Melanoma Program Director, Micrographic Surgery and Dermatologic Oncology Fellowship Back in June, 2012, he didn’t have as many titles.

When we arrived at the imposing University of Medical Center, we were led to an office where a resident met with us and went through what felt like the physical history of Michael’s entire life, along with that of his family. After an hour or so of this preliminary meeting, she left. Shortly thereafter, we met Chris Bichakjian for the first time. Unbeknownst to us then, this bright, interested, engaging young man would become the anchor we were tethered to for the next five years. This was mostly true for me as the point person in Michael’s disease. Michael’s job would be living through what had been and what was coming to his body. Mine was to keep digging into MCC and whatever other treatments might be available for what we had now learned was an “orphan disease,” a disease so rare that few doctors were studying it or its possible treatments. What a terrifying prospect. Dr. Bichakjian was in a loose confederation of doctors and researchers who were trying to consolidate their efforts to tackle this bewildering neuroendocrine cancer, which “acted” most like small cell lung cancer, which represents only about 20% of all lung cancers. A rare bird, indeed and hard to treat. Bichakjian had written the most recent NCCN protocols for MCC. A stage IIIA patient would be most responsive to radiation therapy, especially since the cancer seemed confined to the head and neck area. He told us that if Michael had only one metastatic lymph node instead of two, that no follow up treatment would have been recommended at all. Rather, the extensive Captain Hook-like surgery would have sufficed, followed by three month exams for at least the first year. But with two nodes, more intensive treatment was required. The recommendation was for thirty radiation treatments to the draining basin, his neck and face, six weeks for five days in a row, weekends off. He answered all of our questions and explained that chemotherapy had only temporary effects on Merkel cell which usually recurred mere months after treatment. But burning it had shown significant degradation of the disease. As we ended our appointment, it was clear that a bond between us had been established and we felt hopeful. He told us that he would bring Michael’s case before his tumor board at UM to get input from the various cancer specialists at the facility. Hopefully there would be a consensus. Our departure was warm, and Michael and I stepped giddily into a beautiful, early summer afternoon to celebrate his birthday. That birthday now seemed not like the last, but rather the first of many more.

We headed to a well known Ann Arbor food landmark, Zingerman’s Delicatessen, where you could walk in the front door, get tastes of your potential meals and dine outside in the sunshine. We managed to spend a reckless $75.00 on a few sandwiches and salads which to our elevated senses tasted like nectar of the mythic gods. Then we scrambled into the car to our getaway on the lake.

Trying to describe what we felt then is challenging. What did we really know about six weeks of radiation? How hard could it really be? We were too excited about the possibility of extended life to focus on what was ahead for us that would be hard. We were living in an exquisitely detailed awareness of now, of being together, of relishing how alive we were in the moment. This state is almost dreamlike, each shared touch, each look almost as painful as they were powerfully and intensely beautiful. We would do all the things we normally did on vacation but with greater awareness of how precious all the small moments were. We bought groceries and settled into our little house. The next morning, I was startled by my cell phone ringing at a ridiculously early hour but I recognized the phone number as one from Ann Arbor. It was Dr. Bichakjian calling to say that he’d already met with the tumor board and that everyone had agreed about the radiation treatment plan. I was so grateful for his personal attention. I turned to Michael and told him the news. Then I snapped the photo below.We spent our week quietly, reading, exercising, exploring the natural area around us and of course, sharing our love and intimacy.

We burrowed into our forty years strong fortress of support and determination to forge ahead together, scared shitless or not. We knew that when we returned home, our normal life would be flipped into the new reality of cancer people. But for that blissful week, we relished the space between the before and the future, when we were still just us.

Chapter 2 – The Surgeon


F9B2EE8E-3B52-4C54-B168-696C2A55F3FBWe sit anxiously in the waiting room, steadying ourselves as we prepare for sticking our toes into cancer waters. Our surgeon will be the lead doctor as the journey begins. He is Dr. John Brockenbrough, a young attractive man who exudes confidence. A man with a plan. Michael will be his first Merkel cell cancer patient. He describes the NCCN guidelines for staging Michael’s Merkel Cell cancer(MCC.) We don’t know what NCCN means – later I look it up online and find it is the National Comprehensive Cancer Network.40AF3393-0E9C-442A-8F2A-B82352BDB62B

The first step is a sentinel node biopsy. Michael’s small tumor is located on his upper left cheek. Dr. B. will make a wide eye-shaped incision in the cheek and check out lymph nodes in the area. If any are malignant, a more dramatic flap surgery will be required.
Dr. B. is the head of a medical team that consists of him, an oncologist and a radiation oncologist. Their roles will be determined by the extent of the disease. 14F4E89A-40F3-4955-B38B-BD5649B8AA8F

Michael and I are struggling for balance. We each have a tendency to be pessimistic rather than optimistic. Anything better than a death sentence will be a positive. We are balancing some complex life situations. My mother, who is 89 and showing signs of dementia is a querulous roommate. She has had two different cancers, twenty years apart and doesn’t comprehend what’s the fuss with  Michael’s cancer. To her, one cancer is the same as another. She’s jealous that she isn’t the center of attention. I am the primary caregiver for our grandson who’s been in my charge since he was seven weeks old. He is now 20 months. My daughter and her husband have challenging jobs and the last thing I want is to abruptly send them on a hunt for baby day care. Our son is in the middle of a PhD in tropical ecology which requires him to be in Panama for six months. Fortunately he’s chosen to pursue this degree at the University of Illinois which means he’ll be home at least part of the time to share in this unexpected experience. Our kids are too young to deal with this blow.

I remember 1989, when both my parents received their bad cancer news, within 5 weeks of each other. Michael was struggling with a herniated disk and I was managing a job, two young kids and everything else. I was 37 and felt like Sisyphus rolling his endless boulder up the hill. But there are positives. The good news is that though Michael has stopped teaching for the remainder of the school year, he has plenty of sick time and our health insurance is reasonable. Our dermatologist is optimistic because she thinks the cancer was caught early. Michael and I are clinging to each other but our different styles and experiences are already beginning to emerge. Michael’s parents are both in their 90’s. He has one living sibling who is older than he is but he isn’t close with her.17DBEE72-3682-4A70-B3D9-7E7324AC3194

His family is small, filled with conflict and lacking intimacy. He’s never experienced a death that hurt him deeply. He’s the babe in the woods. And he’s not aggressive although he appears to be due to a volcanic temper. Next to me, he is passive. Also quiet, and proud. Soon he sinks into his silent place which is familiar to me. I hate it. When I start spilling a myriad of ideas, his hand comes up to stop me. He asks if I would mind removing my feet from his back as I race over him. I emerged from a maelstrom of crazy. I’m a scrapper. I think pride is a waste of time. To get what I want or need I’m willing to try anything. I came from a noisy family with multiple health issues, both physical and mental. I experienced deaths during my childhood. I am one of the most aggressive people I know and I learned early in life that I needed to rise above my emotions and use my brain to keep from sinking into the lunacy around me. I have internal armor which I built over time. I don it fast. Michael’s cancer is a wall in front of me. I start to probe it, looking for some weakness that we can capitalize on as fast as possible. After learning about the NCCN, I begin to read everything I can find about the Merkel Cell protocols. Even though we don’t yet know what’s happening, I want to be ahead of the curve.32CD9FE5-5E12-4CCB-9952-538F03FD9FDC

The doctor who wrote them is at the University of Michigan. That’s not too far away from where we live in Illinois. We are going to get a second opinion from someone with more knowledge of this disease. No one at our local cancer center has ever treated Merkel Cell. Three people with this cancer had presented themselves at the clinic but they were elderly and chose not to go through the prescribed difficult treatments at an advanced age. Michael is sixty two years old. The sentinel node biopsy takes place a week after seeing Dr. B. It was delayed because Michael was taking baby aspirin as many people in his age group did for heart protection. The doctor wanted to avoid potential bleeding issues. The procedure is done in a bright, modern outpatient surgery facility. The extra facial tissue is removed along with four lymph nodes. After a few days, the biopsy results come back. One of the lymph nodes is positive for MCC. This lymph node is located on the parotid salivary gland, located under the cheek below the site of Michael’s original lesion.  That result which indicates metastasis means that the more complex flap surgery is required. A scant week later, Michael is admitted to the hospital for an exploratory surgery intended to unearth the extent of the metastasis. Dr. B. informs us that the surgery can take between four to five hours, depending on the number of lymph nodes to be removed, a number which can vary widely from individual to individual. Aside from the usual risks of any surgical procedure, there is an issue of skin lying folded on itself while the doctor attempts to locate and retrieve all the lymph nodes. Skin doesn’t like lying on itself. It can die, become necrotic. We have no choices here. We go to the hospital. Michael is prepped and taken to surgery.B3B1B3B5-CAFA-4A07-BC20-ACCA4860F912

My kids and I settle in a corner of the waiting room, anxiously watching the clock. Hours slowly leak away. After over four go by, Dr. B appears and says he’s removed 62 more nodes. He says only one of them looks funky. I find that’s a remarkable statement, but he exudes confidence. That means only 2 nodes out of 66 total look diseased. One was in and one was on the parotid salivary gland which is under the cheek, just below where Michael’s tiny cancer was located. That night, I stayed in the hospital with Michael. The room was small with only a hardbacked wooden desk chair for me to rest on. But I wouldn’t leave. Michael’s blood pressure and pulse were elevated even though he was still asleep. I rubbed his head and neck and held his hand all night. Every two hours the nurse came in to check his vitals. As they kept dropping, i felt less useful and less powerless. There was something I could do. I could comfort him.  The next day he was eager to go home, even though I wished he’d give himself another day. I could have used one too. But home he came.5AD2F684-B1A2-464E-A78F-887335218B5F

A few days later, the pathology report confirmed Dr. B’s assessment. Only two of the 66 nodes were metastatic.  Michael’s Merkel Cell (MCC) was classified as Stage IIIA. The NCCN protocols for that stage called for 30 rounds of radiation to the draining basin closest to the lymph nodes, as MCC is carried via lymph and blood. His draining basin was his cheek and neck. Adjunct chemotherapy was an option but wasn’t considered effective in the long term. I’d been doing a lot of research by then and we decided to go for a second opinion. I was so relieved  I’d found the MCC specialist who’d written the NCCN guidelines for Michael’s treatment. We made an appointment in Ann Arbor for June 5th, Michael’s 63rd birthday. In the following days, Michael’s incision was healing nicely. I thought he looked like a handsome pirate who’d taken a cutlass to the neck. We made plans for a romantic getaway in cabin on a lake that would follow our appointment in Michigan and precede his treatment. We were in a zone of cautious optimism as Dr. B. was convinced Michael could be cured. We were a tight unit. Next stop – Ann Arbor.   B3CA55CF-F37E-43B0-AB95-987ACE8DC4C7.png

Pushing the Margins

B31B3775-BE04-4B1E-9DCE-A41E75226F02There are the days when you’ve just had it up to here. You feel your aging body and you see it too. That’s the way life goes. Crepey skin, lacking moisture and resilience. Weird hairs growing in the wrong places. I’m a swimmer, and now after 45 years or so of doing the same repetitive motions, my shoulders have begun to ache, the pain and stiffness waking me at night. A pressing sense of urgency pushes me to hurry up and get all those things done that are sitting on various to-do lists and which feel very important. But are they important? Am I important? I can walk down the street wearing an unmistakable cloak of invisibility which I once thought would be a magic power. Not so much any more. To the bustling young people in their invincible minds, I am unseen. I’m exercising and trying to eat right and doing brain exercises. I still remember ridiculous amounts of information about a wide range of topics. So what. The inexorable slide is still happening. For some people with good genes, the process may be slower than it is for others. Some have been forgetful for years. Others, like me, are still able to experience powerful recall. Many older folks do without the intimacy and physicality of their youth.  Lots of people drifted away from sex long ago. Those of us who still have a powerful drive may be stuck without the partner we used to have. A3D4BF17-FAF4-485B-9818-E772BD037836

News at home and abroad is lousy and oppressive. You try to do some good where you can but are left feeling insufficient and overwhelmed. Everything feels annoying and you’re muttering stuff to yourself like, “shit rolls downhill,” “what goes around comes around,” and, “ha, you pompous child, one day you’re going to be in the place I am right now – we’ll see how you like it.” The fact is that older women are marginalized, kicked to the curb, both personally and professionally. Everyone just can’t be Jane Goodall, that wonderful person or other famous women who’ve bucked the odds. Lots of us are just regular.  We grew up trying to find ways to navigate societal expectations. Many us found partners who stuck and many found partners who didn’t. Some never found anyone. We went to work and school, had babies and aging parents and balanced full schedules every day for years. Those of certain economic classes, that is. The poor, the victims of domestic and sexual abuse and the uneducated are marginalized all their lives. I won’t forget that truth. I push back. I have my opinions, my morals and my standards and I don’t feel like getting kicked to the curb. When you’ve fought your way through the grief of losing a life partner, your parents, siblings and friends, you want a little attention and empathy. And you want it to be given freely without asking for it. But as the song goes, you can’t always get what you want. 9F28D5AD-FB33-408F-B694-325E04AA862F

 Yesterday, I wanted my husband to be alive. Of course I always want him to be alive, but some days are harder than others. I wanted something from him that I can’t get anywhere else. I’m pretty warmhearted but I have my boundaries. I don’t like people touching my face. I don’t know why. When I was young, it was okay that my mom did it. She would relax me. But as I got older, I shied away from that. There’s just something really intimate about having a person lay hands on the place where your deepest thoughts and feelings are just underneath your skin. At least that’s   how it works for me. One time, not long ago, my sweet grandson touched my cheek. I sat very still and didn’t jump away from him. But that was a challenge. He doesn’t perceive that invisible wall. I want Michael to touch my face. He would take both hands and shove my hair straight back and stare at me. Ironically, I have widow’s peak. He loved my hairline and looking into my eyes. And I trusted him. I miss that sense of security a lot. Instead there are all these other oppressive and irritating daily struggles that I’d hoped would have been far more improved in these last fifty years. Me, too. Me, too. So what do you do when you just can’t do regular life? For me, it’s hitting the road. My butterflies have flown the coop. 936AE4B1-0792-4CAB-984E-A12F663BF947

I left too. I set some goal for myself after Michael died. One was to see all 50 states in this country. Just before my knee surgery in July, I got up to 43 visited. Feeling antsy and discontented, I decided to take a few days and knock two others off that list, Mississippi and Alabama. My sister, who retired recently, came along with me. I have to say, these two states aren’t high on my list, mostly because my political stance is diametrically opposed to lots of people in these places. So I tried an itinerary which included nature, a little pop history and maybe some Civil War sites. I don’t talk much about the depth of my interest in that war, but I’ve been obsessed by it for years and have read a few hundred books about it. I still gave trouble fathoming the fact that people from the same country lined themselves up across from each other and blasted themselves into oblivion for four years. I thought I might find a place to ponder that subject on my getaway from reality. We started out by driving to Garden of the Gods in Shawnee National Forest in southern Illinois.

 

I’ve been there before but it doesn’t get old. Imposing sandstone bluffs that emerged from Pangea as the earth shook itself into pieces are still awesome to experience. Old stands of beautiful birch trees commingle with other species and create a peaceful quiet that is really soothing. No wonder forest walking has become a recommended therapeutic device. I managed to snag a few rocks that had chipped off the large formations. After we wandered through there, with me being grateful to have knees that work again, albeit a little gingerly, we drove to a nearby town for some delicious barbecue and a good night’s rest.

 

This morning after breakfast, we took off and headed to Mississippi.  The weather was pleasant, cool and sunny. I’d finally synced Michael’s ancient iPod to the car. As we zipped along, we crossed the Mississippi, heading into Tennessee on our way to Tupelo, birthplace of Elvis Presley. I like bridges and taking photos of them while driving which in turn, drives my sister crazy. Sometimes it just doesn’t seem as risky as texting.

 

In any event, I got a few shots and then got interested in fields far different from Illinois’ corn and beans. Cotton fields, some harvested and others in bloom. I realized that random tufts had blown to the edge of the highway so I pulled over to collect a few.

 

I don’t think I’ve ever seen this before. There are special cotton picking machines which somehow collect the cotton and roll it into brightly colored stretchy plastic bales, like hay. Imagining the backbreaking labor of slaves bent over the plants was disturbing.
As we drove through Tennessee, my GPS was sending us off the main highways to shorter routes that took us through small towns and back country. I was just getting ready to make a turn on some side street when I caught sight of a marker pointing toward Shiloh National Battlefield. I’ve always wanted to go there after having read so much about it. Tennessee was considered the Western theater of the Civil War and water throughways there were critical to victory for both sides. Pittsburg Landing located close by, was a crucial port.  The battle was fought over two days in April, 1862. Over one hundred seven thousand soldiers participated with a casualty rate of 21% from both armies.  The fighting raged over terrain that was both heavily wooded and dotted with clearings where people could be mowed down. The amount of artillery was astonishing and caused devastation that astonished the country.

 


There are names like the Hornets’ Nest and the Bloody Pond, accurate descriptors for what happened there. There are mass graves in several locations along with peach  orchards and farmer’s fields, those average people whose homes were in  the wrong place at the wrong time.

 


Driving through the dense peaceful forest, with deer, squirrels and birds abounding, it was hard to inagine the deafening, smoky, violent madness that occurred there. It’s like traveling with the echoes of ghosts. Two future presidents fought there, Ulysses Grant and James Garfield, as did General Lew Wallace who wrote “Ben Hur.”

 

And  then there were the faceless thousands who died, were maimed or survived and went back to their lives. Being on that ground was a moving experience. Times gone by in a flash of chaos.

 


We finally made it into Mississippi early tonight, waylaid but glad for the digression. I’ve only been gone for a couple of days but I do feel less annoyed and grumpy about life in general. A little change of scenery can go a long way. I’m already thinking about what comes next.F62FD809-2E82-40A1-8C7A-409E8D836C16 

Pushing the Margins

B31B3775-BE04-4B1E-9DCE-A41E75226F02There are the days when you’ve just had it up to here. You feel your aging body and you see it too. That’s the way life goes. Crepey skin, lacking moisture and resilience. Weird hairs growing in the wrong places. I’m a swimmer, and now after 45 years or so of doing the same repetitive motions, my shoulders have begun to ache, the pain and stiffness waking me at night. A pressing sense of urgency pushes me to hurry up and get all those things done that are sitting on various to-do lists and which feel very important. But are they important? Am I important? I can walk down the street wearing an unmistakable cloak of invisibility which I once thought would be a magic power. Not so much any more. To the bustling young people in their invincible minds, I am unseen. I’m exercising and trying to eat right and doing brain exercises. I still remember ridiculous amounts of information about a wide range of topics. So what. The inexorable slide is still happening. For some people with good genes, the process may be slower than it is for others. Some have been forgetful for years. Others, like me, are still able to experience powerful recall. Many older folks do without the intimacy and physicality of their youth.  Lots of people drifted away from sex long ago. Those of us who still have a powerful drive may be stuck without the partner we used to have. A3D4BF17-FAF4-485B-9818-E772BD037836

News at home and abroad is lousy and oppressive. You try to do some good where you can but are left feeling insufficient and overwhelmed. Everything feels annoying and you’re muttering stuff to yourself like, “shit rolls downhill,” “what goes around comes around,” and, “ha, you pompous child, one day you’re going to be in the place I am right now – we’ll see how you like it.” The fact is that older women are marginalized, kicked to the curb, both personally and professionally. Everyone just can’t be Jane Goodall, that wonderful person or other famous women who’ve bucked the odds. Lots of us are just regular.  We grew up trying to find ways to navigate societal expectations. Many us found partners who stuck and many found partners who didn’t. Some never found anyone. We went to work and school, had babies and aging parents and balanced full schedules every day for years. Those of certain economic classes, that is. The poor, the victims of domestic and sexual abuse and the uneducated are marginalized all their lives. I won’t forget that truth. I push back. I have my opinions, my morals and my standards and I don’t feel like getting kicked to the curb. When you’ve fought your way through the grief of losing a life partner, your parents, siblings and friends, you want a little attention and empathy. And you want it to be given freely without asking for it. But as the song goes, you can’t always get what you want. 9F28D5AD-FB33-408F-B694-325E04AA862F

 Yesterday, I wanted my husband to be alive. Of course I always want him to be alive, but some days are harder than others. I wanted something from him that I can’t get anywhere else. I’m pretty warmhearted but I have my boundaries. I don’t like people touching my face. I don’t know why. When I was young, it was okay that my mom did it. She would relax me. But as I got older, I shied away from that. There’s just something really intimate about having a person lay hands on the place where your deepest thoughts and feelings are just underneath your skin. At least that’s   how it works for me. One time, not long ago, my sweet grandson touched my cheek. I sat very still and didn’t jump away from him. But that was a challenge. He doesn’t perceive that invisible wall. I want Michael to touch my face. He would take both hands and shove my hair straight back and stare at me. Ironically, I have widow’s peak. He loved my hairline and looking into my eyes. And I trusted him. I miss that sense of security a lot. Instead there are all these other oppressive and irritating daily struggles that I’d hoped would have been far more improved in these last fifty years. Me, too. Me, too. So what do you do when you just can’t do regular life? For me, it’s hitting the road. My butterflies have flown the coop. 936AE4B1-0792-4CAB-984E-A12F663BF947

I left too. I set some goal for myself after Michael died. One was to see all 50 states in this country. Just before my knee surgery in July, I got up to 43 visited. Feeling antsy and discontented, I decided to take a few days and knock two others off that list, Mississippi and Alabama. My sister, who retired recently, came along with me. I have to say, these two states aren’t high on my list, mostly because my political stance is diametrically opposed to lots of people in these places. So I tried an itinerary which included nature, a little pop history and maybe some Civil War sites. I don’t talk much about the depth of my interest in that war, but I’ve been obsessed by it for years and have read a few hundred books about it. I still gave trouble fathoming the fact that people from the same country lined themselves up across from each other and blasted themselves into oblivion for four years. I thought I might find a place to ponder that subject on my getaway from reality. We started out by driving to Garden of the Gods in Shawnee National Forest in southern Illinois.

I’ve been there before but it doesn’t get old. Imposing sandstone bluffs that emerged from Pangea as the earth shook itself into pieces are still awesome to experience. Old stands of beautiful birch trees commingle with other species and create a peaceful quiet that is really soothing. No wonder forest walking has become a recommended therapeutic device. I managed to snag a few rocks that had chipped off the large formations. After we wandered through there, with me being grateful to have knees that work again, albeit a little gingerly, we drove to a nearby town for some delicious barbecue and a good night’s rest.

This morning after breakfast, we took off and headed to Mississippi.  The weather was pleasant, cool and sunny. I’d finally synced Michael’s ancient iPod to the car. As we zipped along, we crossed the Mississippi, heading into Tennessee on our way to Tupelo, birthplace of Elvis Presley. I like bridges and taking photos of them while driving which in turn, drives my sister crazy. Sometimes it just doesn’t seem as risky as texting.

In any event, I got a few shots and then got interested in fields far different from Illinois’ corn and beans. Cotton fields, some harvested and others in bloom. I realized that random tufts had blown to the edge of the highway so I pulled over to collect a few.

I don’t think I’ve ever seen this before. There are special cotton picking machines which somehow collect the cotton and roll it into brightly colored stretchy plastic bales, like hay. Imagining the backbreaking labor of slaves bent over the plants was disturbing.
As we drove through Tennessee, my GPS was sending us off the main highways to shorter routes that took us through small towns and back country. I was just getting ready to make a turn on some side street when I caught sight of a marker pointing toward Shiloh National Battlefield. I’ve always wanted to go there after having read so much about it. Tennessee was considered the Western theater of the Civil War and water throughways there were critical to victory for both sides. Pittsburg Landing located close by, was a crucial port.  The battle was fought over two days in April, 1862. Over one hundred seven thousand soldiers participated with a casualty rate of 21% from both armies.  The fighting raged over terrain that was both heavily wooded and dotted with clearings where people could be mowed down. The amount of artillery was astonishing and caused devastation that astonished the country.


There are names like the Hornets’ Nest and the Bloody Pond, accurate descriptors for what happened there. There are mass graves in several locations along with peach  orchards and farmer’s fields, those average people whose homes were in  the wrong place at the wrong time.


Driving through the dense peaceful forest, with deer, squirrels and birds abounding, it was hard to inagine the deafening, smoky, violent madness that occurred there. It’s like traveling with the echoes of ghosts. Two future presidents fought there, Ulysses Grant and James Garfield, as did General Lew Wallace who wrote “Ben Hur.”

And  then there were the faceless thousands who died, were maimed or survived and went back to their lives. Being on that ground was a moving experience. Times gone by in a flash of chaos.


We finally made it into Mississippi early tonight, waylaid but glad for the digression. I’ve only been gone for a couple of days but I do feel less annoyed and grumpy about life in general. A little change of scenery can go a long way. I’m already thinking about what comes next.F62FD809-2E82-40A1-8C7A-409E8D836C16 

Withdrawn in the Depths

6DE01CB2-66D1-459B-A3C8-758DF624450A I know that the deepest part of the ocean is the Marianas trench. I learned from a brilliant scientist who taught a class called Emergence of Life that water in the takes up between 50-70% of a human body.E8077F2D-28C3-43EA-8379-696093AC20BD

For as long as I can remember, I’ve spent time submerged in the liquidy depths of me. While out in the world, doing the average activities that people do, I know I appear to be just like anyone else. I pass for normal. But I don’t really think I am and I never have. While lots of people seem just fine skimming along on the surface of daily life, I was always digging and probing and pondering. I rarely had a conversation with anyone that I didn’t rerun in my head, dissecting it, trying to figure out what else was there that didn’t show up on the first cursory pass. I always thought there was something else below the surface. Additionally I generally seemed to remember a lot more than other people. For example, I’d remember an incident or a series of them which I’d try to recall with someone. I received a lot of blank looks and comments stating that they had no idea what I was talking about. I realized that while it’s impossible to access all of our memories, some people actually do what I call “papering over” the things they’d prefer to forget.C059834D-C370-498E-8F7F-FBD6CF4B10FA

While I was growing up I learned that my constant analyzing and revisiting certain topics was not popular with my family and friends. I heard “let it go,” plenty of times. But I didn’t want to and really couldn’t, until I’d exhausted every single possible interpretation of the smallest event to the largest, I couldn’t be satisfied. I think most people just wanted me to shut my mouth. That’s still true today. When I was young and sensed that I’d pushed the limits of patience with people, I’d back away from what I really wanted to do with them. It felt like dancing without a partner. I made people impatient. Always talking too much, digging too much and not leaving well enough alone. I got it then and I get it now. I don’t know if I was born this way or if I developed this trait to try protecting myself from all the uncertainties and fearful events in my childhood. At this point it doesn’t matter. I wish people were more understanding and patient with me. BACD6155-6CD6-4556-A264-547597C1B9A5

From my standpoint I think patience is an underrated quality. For the most part, I don’t think people are patient enough. And as our culture becomes more of a pressure cooker, I don’t expect that to improve. Long ago, to help myself survive the rejection of my individual style. I’d turn inward. Withdrawal. I could seem present in a moment but I was actually away, submerged in myself.  I don’t think I’ll ever get to the bottom of me. I can swim around my interior for long periods of time, trying to get to some point in my self-discovery that feels complete. I have an anecdote about that. I was mentioning a story to my son the other day and he said, “I know, I know, I’ve heard this a thousand times.” That might be right. But the story was a seminal moment for me, the moment when I found Michael, my best friend and the only person I knew who was willing to go with me deep under, even when it drove him crazy and when he wished I could just be, instead of working everything to the bone. It was the morning after we first met at a wedding and had spent the entire night before, hanging out together and feeling what for me is still hard to describe, an electrifying fitting together that was outside my previous experience. There was nothing cerebral about it. This was a strange sensory phenomenon that we both recognized and were eager to keep. I was leaving for Chicago the next day and we went to the home of my ride where a number of mutual friends were gathered. There were people struggling emotionally with their relationships, including Michael’s girlfriend who wasn’t thrilled by his lack of attention to her the evening before. Always a helper, I plunged into all the dynamics around me, trying to smooth things over and make some sort of peace that jangly morning. Michael sat silent, stonily staring straight ahead and after awhile, I realized I was getting nowhere with anyone. So I announced my apparent failure and said, “now I’m going to withdraw.” That drew Michael’s only response, one word – “don’t.” FACE0998-C172-4A93-B5E0-D465F119C8AE

That was a stunner that changed my life. When I returned from my trip home, I found Michael and asked him to come to my house so that we could continue to build whatever this thing was between us. After some months of deepening our friendship, I realized that I’d found my spot, my safe place, my best friend, my life partner. And luckily for me, he felt the same way. I was twenty years old. During our forty five years together, we had our issues like everyone else. But in the worst of times, our powerful friendship and the way we fit together carried us through everything. When he died, I knew that kind of steady backup and trust through anything was over for me. A part of me has been deeply immersed in myself with the years of our bond still helping me navigate my new daily life. But I’ve recognized that his steady  presence in my life lent me the ability to be patient and understanding out there in the big world. After all the juggling of my younger days, trying to negotiate the relationships of people around me, I no longer have the impetus to absorb the parts of others that don’t satisfy who I am and how I feel. I am a different version of myself. 317805C8-5173-4ED6-9922-787A00E2EF4A

I am more than ever likely to withdraw now to my go-to place, internal pool that existed before Michael, that was still in me when he was here, and that is now where I feel my only true fit. He was always sensitive to my departures whereas others had no clue that I was actually totally detached and absent from whatever was happening in front of me. Much of my external behavior is performance. I am lurking below the surface because I truly don’t believe that most people want to be a part of me in the ways that work best for me. They like my parts that work best for them. Some think that having family and good friends is enough to breach the gap I created to process hard times long ago. My experience tells me otherwise. So I’m trying to find ways to survive this life with myself as my only anchor. I still have the strength of what existed in that magical way between Michael and me. I have skills. I’m strong. But I’m tired too. And holding on to what was isn’t an easy thing to do every day. I’m thinking about what I’ve taught myself to try to stay balanced while struggling.OLYMPUS DIGITAL CAMERA

I remember the day of my dad’s funeral. A September morning 30 years ago,  cool and sunny. I was driving by Mt. Hope cemetery to the bakery to pick up cakes and pastries that family and friends would share at my mom’s place after a graveside service. As I drove along, feeling surreal, I found myself thinking what I’d thought so many times before and so many times since. Out there in the world, while I’m engulfed in grief or whatever other feelings of the moment, people are running. They’re playing sports or going for walks. They’re sleeping, making love, birthing babies, dying, crying, working, hiding and virtually any other verb you may want to insert here. Living their lives, dying their deaths, feeling their feels. You have no idea what those outside appearances are concealing. Sometimes they don’t know either. All over the world, life and death go on, and no matter how important your own particular event feels, there is always someone else’s that’s worse. That’s one of my most successful go-to strategies for coping with life, realistic thinking. Sometimes I can make a small event feel like it may have long-range positive consequences to help myself cope with staying balanced. 2B8329C4-EB5A-4D48-9ABF-AB2F3A262923

I was working out in my garden in late August. School was back in session and my house is on a pathway home for lots of kids who come rushing by at the end of their day. Two middle school-aged boys were riding their bikes down the street when the smaller one of the two screeched on his brakes and careened over to the sidewalk in front of my house yelling, “dude, you have to see this giant flower!” He’d spied one of my massive hydrangeas and was knocked out by it. I smiled and said, “pretty cool, right? I think you guys are very special for paying attention to nature. Lots of kids wouldn’t have noticed.” They smiled and rode away. I saw them in a different place about two weeks later and recognized them. I said, “hey, aren’t you those smart guys who stopped to look at my garden?” They looked surprised but pleased. Yesterday, I was out again and they were going by the house, dressed in pajamas for what I surmised was a special day at school. I hadn’t noticed them but the small one said hi and waved as he went by. I hope what I said to them and my presence during their time going up and back to school will stick with them, both in regard to the nature stuff and in the fact that an old lady can be someone worth engaging. I draw energy from stuff like that.

As my dive goes further, I find I’m trying to work things out in my dreams. I don’t know a lot about how the subconscious functions but in recent days I’ve dreamed that Michael was just outside, mowing the lawn. Then I dreamed that though I knew he was dead, I also knew part of him was alive and living with another family. So I went to retrieve him. As I approached where he lived, he appeared, looking wonderful and accompanied by our beloved collie Flash who looked like he did at six months old. That dream woke me from the sheer joy of it. I also dreamed of my dear friend Julie who’s in hospice now. I had driven back to her home for a second visit and she answered the door looking healthy, feeling stronger, and again I felt relief and delight. My sleeping mind is swimming with with these images which are wishes and small comforts compared to reality. I don’t pretend to get it but the days following these nighttime interludes start better than the ones that have no evening respite from reality. And then there are my daydreams usually brought on my music or activities that remind me of old times or a surprise photo that can elicit powerful surges of desire and ache.52D003D2-ECEE-4E88-B2D6-9D3EC9737227

While preparing a sizable family meal which I’d done so often in the past, my day was infused with essence of Michael, to the point when I stopped to write him this letter:
Dear Michael,

I’ve spent the day chopping and mixing and cooking all the food that goes along with preparing for company and a festive holiday meal. So that means you are huge in both your absence and your presence. I wish I could talk to you about what this feels like and have you answer me in real time. Maybe you are. The other day I realized that I hadn’t seen monarchs in a few days so I made a note for my records that they’d departed for the year. When I peeked out into the back yard this morning, the white butterfly bush was alive with them in addition to the painted ladies and the sulphurs that are still hanging around. That bush is smack in the middle of what was your tomato garden and I’m not kidding, that shrub is massive and still producing new blooms that I’ve coaxed along by diligent deadheading. But the ground is full of your sweat and love and I don’t give a flying fuck about how mystical and bizarre it all seems – I know you’re in there. One day we both will be because when I finally become ash and am rejoined with yours I want the kids to dump at least part of us there. Part amongst my flowers too and the rest? Apparently we’ll become some piece of glass art, showing up as silvery streaks in the middle of our colors which you know will be red and black. Maybe a little green for depth but definitely our political colors. In any case, when the monarchs were there this morning, was I wrong to feel you’d sent a few back my way? But no more. Those guys need to get out of Dodge because it’s getting chilly. Thanks, though. So back to the kitchen. It’s about a thousand degrees in there and I’m at the sink, cleaning carrots and you come in and I say, “man, I’m really hot,” and you say, “you’re telling me.” That same old line which I pretend I don’t like but of course I love it. Then you come up behind me and grab some random body part and move suggestively and I say, “go on, you perverse old man, get out of here so I can finish up.” I smirk and make some wisecrack but I adore the familiar intimacy. And then you stick your finger into a bowl for a taste and I tell you it’s unsanitary and you laugh and drift into the living room. You have the day off when I’m cooking because you do so much of it in daily life. But you don’t get a pass on the cleanup. I shimmer through these daydreams like an apparition with you and they cloak me in a happiness that’s so transient and ephemeral. I’d love to catch up with a wavelength in time where we are solid and physical instead of the myth we’ve become. My precious boy.

So there that is. I am away for large swaths of time in this watery internal cave because I don’t like a lot of what’s going on in reality. As I slide through my days in real time, I remembered when I read The English Patient back in the early ‘90’s. It was one of those rare films that wasn’t a disappointment to me as so many films based on books can be. Sweeping, beautiful, romantic, passionate and ultimately sad.

 

I’ve been taking a class on Persia and Greece and there has been mention of Herodotus and his histories. In the movie, a tragic plane crash in the Egyptian desert leaves the wounded heroine in need of medical attention. Her lover carries into a cave where the walls are filled with petroglyphs that include swimmers. As he leaves her with food and water, he also gives her his copy of Herodotus, a “good read” as she awaits his return with aid. That’s how I feel now, swimming in a my interior cave with a good read for company hidden away from the rest of the world. Wondering when I’ll come to the surface.