What Turns Up

The past few days, I’ve been ruminating. Ruminating while sorting through piles of paper in my house. Thinking about Thanksgiving which I took over from my mom when I was thirty. I’d just had my daughter in late August that year and felt like I’d really arrived in my adult life. My whole family came down from Chicago and we packed a lot of people into this house. I’d gotten really sick with the flu but I didn’t care how much fever I had – I was doing this no matter what I felt like. And so began a tradition that was maintained until Michael died in 2017.

I was already tired of the whole production. I can’t count how many hours I spent preparing for this one day, and during the last seven or eight events, things were tough. My knees were bone on bone and all that time on my feet was expensive for my body. When Michael got sick, continuing with the annual dinner was heavy with emotion, always wondering if this one was the last one for him.

In November of 2017, just a few months after he died, I handed the tradition baton to my daughter and my son-in-law. This year will be my third Thanksgiving out of my house.

I’ll bring a few of my specialties to their place but now I’m a guest. That’s just fine with me. While going through a lifetime of papers, I realized that I’ve kept all my Thanksgiving prep notes and plans. We often had 25 people here and the quartermaster in me had a battle plan. Maybe one day, I’ll be able to pitch them into the recycling.

Anyway, I’ve been thinking that now I’m a matriarch. I’ve actually been one for a long time because my mom never quite managed that role. Thinking about how you slide into different positions in your family is always thought-provoking. So many people who all shared the same table are gone now. Some spaces are forever empty while others are filled. When I think back, I recognize the role shifting that was in play long ago, but most of the time, none of it was discussed. The transitions just slid into place, as if we were all puzzle pieces whose little knobs finally found their proper fit. At least for a time.

I’ve been trying to focus on the positives in my life these past few days, a socially appropriate attitude for this holiday. Mostly they are little things which in my view are what make up the bulk of our lives. I seem to be transitioning into a place where I’ve almost completely internalized the powerful connection that I still feel with Michael. I see him, I hear him and I feel him all the time. That love is a source of strength for me along with its aura of mystery that radiates through me. I don’t understand it at all but my daily functioning is improved. I’m engaged in an interior dialogue with him which feels comforting. Today I went to the grocery store, one of my most detested chores. I’ve always tended to overbuy. As I stood unpacking the bags in the kitchen, I was mystified by how many packages of cheese I’d bought. I suddenly heard Michael’s voice saying, “so, was there a big sale today? You couldn’t afford not to buy all this?” I laughed out loud as that conversation had happened so many times in the past. I’m glad I have these vivid memories.

I’m also glad that the Walgreen’s clerk knows my name and I know hers. I’m grateful to have relationships with all the young pool employees who listen to my stories and let me mother them. I’m grateful that two people, one of whom is a dear old friend and another who is a total stranger who only knows me through reading this blog, took a moment to send me a New York Times article about my beloved Roger Federer. And of course, I’m grateful for my family and friends and for the fact that after 15 years, my two knee replacement surgeries have erased the dreadful pain I’d tolerated for so long. Another great joy has been unearthing incredible relics from the paper mountain I’ve been climbing. You never know what might turn up.

In what feels quite serendipitous, while thinking of my first Thanksgiving hostess job, begun right after I became a mother, I found a small brown travel journal I’d bought in 1980 for a trip Michael and I were taking that October. The trip was suggested by my obstetrician as a break from our attempts to conceive. We’d been trying for two years and I was really discouraged. Although my mom never had problems with fertility, other women in my family did and I suspected I was in the same boat. My doctor said that before we started fertility testing, a trip away from the constant monthly pressure might help relieve stress which could be getting in the way of pregnancy. So we planned a driving trip to Colorado, a combination of camping, national park visits and a little luxury on the side. I was twenty nine and Michael was thirty one. Most of my journaling during my life was done on notebook paper or legal pads so finding this little book was quite a surprise. I remember this trip well. I’d never been in the mountains before. Going in October promised to be a great choice as kids were back in school, meaning that the places we’d visit would be less crowded than they were during the summer months. We left home early on October 1st, 1980.

We were headed to Redstone, Colorado, population 94. Our destination was the historic Redstone Inn, once a large rooming house and lodge for miners working in the surrounding mountains. We drove through Aspen and Vail to get there, the scenery spectacular and lit with fiery fall color.

Our room was old-fashioned, no phone, no television, no radio. The first night, we unpacked, explored a bit, had dinner and turned in early as we had a busy schedule planned for the next day. We woke up, had breakfast and went for a stroll before getting in the car to check out McClure’s Pass which was incredibly beautiful. In the afternoon, we’d scheduled a two hour horseback ride up into the mountains with a guide. We were taken up into the clouds on narrow paths, surrounded by aspen trees. We saw a hidden mansion of a mine owner and were enjoying the scenery, almost at the end of our upward climb when my stirrup got caught on a branch that struck my horse, causing him to rear and toss me off. Michael’s horse reared too but he held on as the guide scrambled to get control of mine. I was stunned and in severe pain, feeling around in the fallen leaves for my glasses which had flown off my head. I realized that I had no choice but to remount and get back down the mountain to the stables. Each movement of the horse was a jolt to my aching body but I made it. My dismount was more like falling and Michael was shocked that I could barely move. I got in bed and he went to find a dusty tube of Ben-Gay that I slathered on myself. The next day I sent him off for a hike while I lay still trying to read a book, High Tide at Gettysburg. What a crazy detail to remember. One more night in Redstone and then we headed off to the closest hospital at Glenwood Springs where I was examined, x-rayed and given muscle relaxers and painkillers. With the rebounding ability of youth, I got myself going, determined to keep on course with the trip. We did our laundry and then drove to Marble to see a partial ghost town and old marble quarries.

Then we went off to Telluride where we explored the town and then went off to pitch our tent in the San Juan National Forest. I was pretty impressed with my resilience and enjoyed being out in the crisp fall air, cooking outside and being alone. We read by the light of our Coleman lantern at night and had a wonderful time, thanks to those handy medications. From Telluride, we moved on to Mesa Verde National Park. We camped there and were delighted to climb out of our tent in the morning to see deer wandering around our front yard. We explored the pueblos and ruins and read about the history of the vanished people who once made a life there.

Our next stop was Ouray, Colorado. We drove the incredible Million Dollar Highway where at one point my speed was so slow that Michael woke from his nap because he thought we’d stopped. That road is one of the most challenging I’ve ever driven.

In Ouray, we stayed in a hotel. We ate at a delicious restaurant called the Bon-Ton which served Italian fare. We tasted Mondavi wine from California for the first time at that place. Ouray was an engaging town which we strolled through for a day. We eventually signing up for a jeep tour of Engineer Mountain, just under 13,000 feet and a challenge for me as I’m not fond of heights or bouncing along on them in an open-sided vehicle. We did it though and I managed to grab a few rocks which I still have today. We finished our wonderful trip at the Black Canyon of the Gunnison National monument, another remarkably beautiful place. I still have the brochure from there, a far cry from the glossy ones you can pick up at any national park today. Then we headed home. Despite my unfortunate accident we had a wonderful, relaxing trip. Within a month of that trip I got pregnant. My doctor was right – we needed to break a stressful pattern. How incredibly lucky were we. My daughter was born the following summer, just a few months before I took on Thanksgiving for what would be a 35 year stint as I unwittingly shifted to being a matriarch. As I work my way through the paper history of my life, there’s no telling what will turn up. Old feelings, new understandings. On I go. Happy thanksgiving to those here and those always near.

Be 278 – Chapter 6 -Cancer Bomb

Michael and I stepped off into 2013 with our new regimen in place. We were concentrating on figuring out how to adapt to the knowledge that he was harboring a potentially deadly disease that could rear its head at any time. Simultaneously, we were trying to practice real mindfulness, squeezing our best possible days out of the present.

I had gotten trained in the art of lymphedema massage, a technique used to relieve backed up lymphatic fluid which occurs when lymph nodes are removed and the fluid creates swelling. Michael’s was in his face and neck. I’d had some practice doing this for my mom years earlier when she’d had many lymph nodes removed during her mastectomy. I felt glad to have a hands-on way to be helpful in relieving some of his discomfort. In early June, when school ended, Michael and I had our long-delayed trip to Sanibel Island, cancelled the year before. Then I surprised him with a birthday gift, a journey to Panama to have a “boys’ trip” with our son who was working on his PhD there. A biologist studying the physiology of tropical birds, our son hadn’t ever had a private trip with his dad. We’d had plenty of family vacations, but all of us thought there was a long future stretched out ahead of Michael, with plenty of time for the two of them down the road. The previous year’s Merkel Cell cancer diagnosis and subsequent treatment changed all that. We were living in the now instead of the future. There was no more counting on limitless time. Michael the historian was eager to see the Panama Canal, in addition to observing what his kid was doing with his research. The night before Michael was supposed to leave, I developed lower back pain and bled when I urinated. I’d had a kidney stone once before which was quite painful, but this didn’t feel as bad as that one. We got scared because my father had died from bladder cancer which presented only as blood in his urine. Michael wanted to cancel his trip, but I said, no way. The previous year, our kid had learned of Michael’s disease while he was alone in the rainforest. If there was something severely wrong with me, I didn’t want him finding that out, alone again. Michael took off on Sunday. By Tuesday, I was relieved to learn that I, indeed, only had kidney stones, and was thrilled that Michael was traipsing around with our kid, having a lifetime experience for both of them.

When Michael came home, we proceeded with a normal summer. I deferred dealing with my massive kidney stones until after our grandson moved on from our house to day care. Michael seemed to be doing well at his regular exams and we edged cautiously forward, hoping against hope that his remission would stick around. Looking back on that past year and four months, it was hard to believe we’d gone through an orphan cancer diagnosis and treatment, moved my mother from our house to assisted living, had our son return from Panama with a scary dengue-fever like illness, while I walked around for months with kidney stones. In the meantime, our daughter was pregnant with a second child. After grandson one was safely ensconced in day care, the plan was for me to have my kidney stones removed, rest for a few months and then get ready to care for baby number two who was due in January. Michael would return to his classroom in the fall. His scan, the first since November, 2012, was scheduled for November 8th, 2013. As our family was coping with these issues, our longterm neighbors across the street were also dealing with cancer. The husband in that family had been struggling with a lethal form of leukemia and had gone through a bone marrow transplant. His wife and I were sharing the stress and fear of losing our spouses and were both worn out. Our families got together and decided we really needed a break.

So in October, shortly after my kidney procedure, we were gifted with a long weekend at a cushy resort in Wisconsin where we’d be pampered from head to toe. I was surprised, grateful and very unhappy. The reservation began on Friday, November 8th, the day of Michael’s long-awaited scan. I really didn’t want to go. My deep concern over that long gap between PET/CAT scans was always hovering a few millimeters below my surface. Although I was practicing living in the present, my inherent instinct to look down the road was always operating covertly. Old habits are indeed hard to break. I tried arguing my way out of the trip. Michael really wanted me to get the break before Thanksgiving, always a big bash at our house and his favorite holiday. He made sense but I was very uncomfortable and nervous. He told me that being present for the scan wasn’t necessary, that I would be with him when he got the results. Everyone else was pushing for the trip, optimistic and really excited because they’d taken me off guard, always a tough thing to do because I usually sniffed out the best-laid plans for me. So, reluctantly, half-heartedly, I packed up and took off for my very unwanted vacation. I wanted to be with Michael but I made an effort to appreciate the luxury of having nothing to do but be the recipient of massages, pedicures and poolside service. I tried to submerge my worries and enjoy the moment.

When I returned, Michael told me that his post-scan appointment had been moved from November 11th to the 12th. All my nerves went jangly as I felt my radar detecting a problem. Michael seemed alright but I couldn’t wait to get to that late afternoon appointment at the end of his school day. We sat in the lobby of the head and neck oncology department for a bit and were soon called back to the office. Within minutes, our surgeon entered the room with the scans and it was instantly apparent that we were in trouble. Unable to shake the crestfallen look on his face, he shoved the films up on his light board which lit up with red flashes indicating widespread bony metastatic disease. The cancer bomb had detonated.

He said he’d looked at the scans three times in utter disbelief, unable to wrap his mind around the involvement of so many bones. He thought it must be a different cancer – of the 1500 cases of MCC diagnosed per year, only 10% of distant metastases were to bone. He’d already scheduled a bone biopsy for Michael with an interventional radiologist to confirm the diagnosis and we were being sent to oncology where the cancer doctor would assume the team lead from him, our surgeon and guide. His nurse slipped into the room and told us that he’d practically been in tears and was horribly disappointed that he hadn’t been able to stop the disease progression. We asked him for a prognosis. He said that absent treatment, Michael might have two to three months of life, with treatment perhaps a few more. He looked utterly defeated. When we left the office, I felt so sorry for him that I gave him a big hug. He said that was the first time a patient’s family member had taken the time to feel something for him. But I truly felt for him.

We stumbled toward the elevators, numb. We called our kids and decided to head over to our daughter’s law office. Our son joined us there and the four of us lay entwined on her couch, sobbing in disbelief. An unforgettable moment in time. There was our girl with her pregnant belly, wondering if her father would live to meet the new baby. Eventually we all went home. That night Michael and I clung to each other in our bed, alternately crying, talking, comforting each other, trying to grasp what would happen next. We slept fitfully and rose the next day to make plans. He needed to resign from school and prepare his students for that eruption in their lives.

I was already thinking of what I could do to help him face his mortality and give him succor in this dreadful time. He went through the bone biopsy which confirmed the MCC. Then we met with our oncologist, Dr. Luyun, who was now our primary team leader. We talked with him about the chemo regimen which would be rigorous – a cocktail of carboplatin and etoposide, given back-to-back, three days per week, every three weeks.

This was not a protocol designed for MCC, but rather one for other neuroendocrine cancers. Chemotherapy was not considered to be truly effective for this disease, except in the short term for some lucky patients. The day after the last treatment, Michael would be given a Neulasta injection to help support his immune system as his white blood cell production, along with red blood cells and platelets, would take a big hit from this toxic regimen. We asked him how long he might live with this plan. Luyun replied, “maybe a year.” We contacted Dr. Bichakjian in Ann Arbor to see if he felt the treatment was appropriate. He was disappointed for us but confirmed that this choice was our best bet for now. We touched on the topic of clinical trials but discovered that traditional treatments needed to be exhausted before going that route. We asked Dr. Luyun if we could take some time to let Michael make his exit from school and have a normal Thanksgiving. He said a few weeks wouldn’t make a difference.

So we proceeded to the tasks at hand. Michael offered his retirement to his principal who sadly accepted it. Then he had to tell his kids which was very hard for him and them as well. I immediately started a Facebook support group for him which the school graciously shared with the kids, their families and the building staff. The group’s numbers burgeoned so quickly that Facebook trolls started advertising on its page. After that, people needed approval to join. For Michael, who was not a big social media person, this group became an important lifeline to the people and the job he loved so much. In addition, I contacted the school district to help establish a scholarship in Michael’s name that would be awarded annually to a student who excelled in the study of history and government. These small, concrete actions made me feel like there was actually something I could do to help my partner as he stared at his mortality. I don’t think either of us could really believe the horrific prognosis. He had no pain. He did start losing a little weight after he heard the bad news but he still looked strong. Imagining death is such an ephemeral experience even when there’s nothing critical going on with your health. I think conceiving of the world going on without you is just too hard. Michael wasn’t ready to leave his life. He said he’d be willing to try anything to stay alive. “I’m not done yet,” he’d say. “I still have so much to do.”

Our kids came to his classroom on his last day to help carry out his personal possessions. All day, administrators and other teachers sat through a period of his teaching, out of respect for his skills. Kids brought gifts, cards and notes. He gave away certain precious classroom items to his closest colleagues. As we packed and watched him gather up the symbols of his career, one lone student sat in the classroom, struggling away on the Constitution test, a senior with learning disabilities who worked very hard and needed this exam in order to graduate. Michael had given him study aids and steady encouragement as we all milled around him. When it was time to go, Michael sat down to grade the exam. When he got to the end, he looked up with a grin and said, “Congratulations! You passed.” The boy’s face crumpled with relief and joy and he threw himself into Michael’s arms, saying thank you and then, good luck with your sickness. I don’t know if he really passed or not. The beauty of the moment was enough.

We tried to squeeze in some normal life. We went to the movies and saw Twelve Years a Slave which was so somber we could barely speak afterwards. We took a quick trip to Chicago to go to the Field Museum to see some exhibits and to eat at two of our favorite restaurants, Greek Islands and the original Uno’s Pizza. We lay in bed for hours holding each other. My journal describes those moments – “I am enveloped in love and lonelier than I’ve ever been.”

Next came what we thought would be Michael’s last Thanksgiving. Our family came including cousins, second cousins and anyone else from far away who feared they’d never see Michael again. From my journal – “As I prepared the food I felt overwhelmed, disconnected, detached. The food turned out delicious, maybe some of the best I’ve ever made. I only cried twice. I guess it was the right thing to do.” Treatment would begin the following week. We were as ready as we could be.

Beechwood Memories

You know those days that start out being really irritating and then seem destined to go straight downhill from there? That was today. I woke up early to watch my beloved Roger Federer play tennis. After a brilliant match two days ago when he manhandled my least favorite player, Novak Djokovic, he lost to a next-gen 21 year old who I actually like a lot. I know that I don’t want to be one of the crazies who let their moods depend on athletes, but some days a great match from this 38 year old superstar and seemingly impossibly decent human being, goes a long way to bring me to a truly good mood.

After that, I needed to go to have my blood drawn in preparation for a physical on Monday. This is never a fun time for me as I was born with invisible veins, a genetic gift from my mother which I in turn passed on to my daughter. When I had knee surgery in July, a nurse with a bad touch wound up blowing my most reliable gusher with her attempt to insert an IV.

So I went with trepidation to the lab only to find that the hours on the internet for that facility were incorrect. Could I get grumpier? Yes, indeed. I dashed off to the only open lab, available for another 45 minutes. I entered a germ convention, every seat filled with hacking children and adults. After checking in, I burrowed down in my jacket, trying not to breathe. There were seven blood draws ahead of me. I watched to see which phlebotomists were available. I was hoping for someone experienced. But unfortunately when my turn finally came, the woman who called for me looked like she was about fourteen. She got her two stabs in before finally realizing she didn’t have the magic touch. Explaining this to people gets very tiresome. She got a more mature woman who got me on the first try.

With my new set of bruises and bandages I left the lab, last person out the door. I was beyond annoyed. But there was a positive plan. I had appointments for a massage and a haircut. As part of my widow coping skills, I budgeted for a mini-spa day for myself every six weeks. A good way to contend with the physical isolation that happens when you lose the daily contact you’ve been accustomed to having for the bulk of your life. Imagine if the only touching you experienced for days was being stabbed three times for a blood draw? The timing was perfect. Looking for an additional way to defeat my crummy mood, I checked out movie times for a film that would be guaranteed to distract and entertain, rather than causing any negative reactions. I chose “Ford v. Ferrari which proved to be exactly what I needed, an interesting story with action and more humor than darkness.

After that, I was in evening. I have plenty to do, but sometimes, after a mixed bag day, I allow myself the luxury of looking back on good times which can be an internal process or an external one. I decided to pull a photo album off my shelf which is a guarantee for producing happy thoughts. The one I selected at random brought me back to a magical time in my family life, the years of fun at The Beechwood in Sister Lakes, Michigan. In the very late 80’s and for many years in the 90’s, our family participated in what can only be described as family camp with old friends. When it began, Michael, myself and our kids hooked up with my oldest friend from elementary school, high school and ultimately my college roommate, her family and one other family to rent cabins at the Beechwood. We stayed in Cabin # 1.

A funky place with a number of old houses, some small, some bigger, owned by a very relaxed couple named Tom and Virginia, the place housed a playground and a beach on Round Lake, one of the Sister Lakes. We started out as a few people, but as time went on, more and more of our old friends and their kids joined in until we’d turned into a crowd. Some people came for a few days, others for one week or two. There were babies and grannies, singles and couples.

Traditionally, I prepared dinner for the first night, a hearty, spicy chicken and potato concoction. Side dishes came from everyone else. We all usually shared one big communal meal daily, most often supper. As years went by, it got pretty incredible, cooking for 30-40 people. During the days, kids and adults alike popped into different cabins, often staying for lunch. There was swinging and swimming. We rented boats with tubes for riding and water skis. Eventually we rented jet skis. There were basketball games, lots of spades and hearts, board games and ping pong.

We bought a lot of fresh fruits and vegetables – I honed my peach pie-making skills there. We went to Wick’s Apple House for fruit, cider and delicious Reuben sandwiches which were big enough for two people. Kids went off with parents who weren’t theirs but it was okay.

We took excursions. Bowling, amusement parks, bookstores and ice cream parlors were explored. People fished and read a lot. Or just did nothing.

At night the happening place was The Driftwood, an ice cream parlor which also sold kitschy souvenirs and had loud music in the background. Michael and I had vehicles with space, his a big red Chevy pickup that held lots of bouncy kids and mine a station wagon with a “way back” seat that faced backwards. Good, cheap thrills.

At night there were bonfires on the beach where we toasted marshmallows and the kids enjoyed the fireworks brought by my pyromaniac husband who was easily as thrilled as they were. The kids wrote plays and performed them for the grownups and they had mass sleepovers.

Every year we all looked forward to this trip which was a family and chosen family-based experience. In my crew, everyone was happy but my son who was one of the youngest kids. Each year as he grew we’d excitedly head back to Michigan where to his dismay, he’d find that everyone else had grown too and that no matter what, he’d never catch up. He was also conned by one of the few kids who wasn’t in our group who told him that he should bury all his teenage mutant ninja turtle toys in the sandbox as part of a game, only to find that they were all missing when he went back to find them. The early hard life lessons.

Over time, there were a couple of modern A-frame buildings built right on the beach. Although our group had the largest number of people, there were other folks who rented at Beechwood. We became an imposing presence. We got along well with Tom and Virginia but one day, they decided it was time to retire. They sold our beloved summer home to some younger people whose goals were very different from what we’d previously experienced.

In December of 1995, the new owners sent out a newsletter, part of their management approach and included a note for our clan. This memory was my final erasure of today’s earlier sourness. I read their note and Michael’s response to it which follow below. Unreconstructed rebels we were, even as a responsible parents with kids. Enjoy this with me:

From the new owners –

“I know you have been coming to Beechwood for many years. It has become a tradition that your group can spend summer vacation together, something to look forward to. However, my wife and I have apprehension with inviting your group back as our guests, based on some of the things we experienced and endured with your group at Beechwood kast summer. Such as:

Exclusive telephone use. The “business line” on the porch is for convenience and emergency use only. Your group used this phone often and extensively. We ask that you limit the use of our phone for its intended purpose. Many friends came to visit while you were at the resort. Traffic was a steady stream of cars going in and out and using the limited parking space at the resort. Beechwood is a great place to visit, but we feel that our facilities should be limited to those uses by those who are registered guests. Beyond that, our existing facilities become taxed and overcrowded.

I understand that most of your kids are teenagers which means, among many things, that they want to have fun without dad and mom watching over them. However, in our rules, we state that your children should be supervised. Yes, I know that kids will be kids, but kids have to know what the limits are. Last summer, your kids lost a few of the recreation balls – you did replace them but by the end of the second week, they were lost again. We had one of your kids “lose” his suit while swimming, then ran around the beach trying to get it back. Funny, yes, but we had many complaints from other guests on this kid’s behavior. In fact, your kids talked back to a few guests when approached about this behavior. And the swearing from them was intolerable. We could hear them down at the beach from our house. Also, at times, their use of the recreational facilities was destructive. There is no need for any of these things to happen. We invite you back to enjoy your Beechwood vacation. But, you all must examine this letter and our wishes to make this work for you, other Beechwood guests and us.”

Well, then. Here is Michael’s response:

Dear Jim,

Thank you for the informative note you enclosed with your December newsletter. Despite the fact that our group rented every cabin at the upper portion of Beechwood last summer, we can certainly understand how the many other guests had trouble with our unruly behavior and the total lack of supervision of our children and friends. To alleviate your apprehension with inviting us back, we have all agreed to take the following steps to make sure that we have the type of vacation you think we should have.

1) We have contracted with G.T.E. to install a pay telephone booth for the two weeks that our group will be at Beechwood. We will of course cover all of the costs, and you and your family are welcome to use it as well, as long as you have correct change. This will leave the business line free for emergency calls, calls of “convenience” for neighbors whose phone service has been interrupted by tropical storms, or incoming calls from your stockbroker or psychiatrist.

2) We do have many friends and family members who visit us at various times. We are probably quite fortunate that the beach wasn’t shut down by the Public Health Department last summer due to overcrowding. We have agreed to run a noiseless electric shuttle from downtown Sister Lakes to prevent the “steady stream of cars going in and out,” and eliminate the massive traffic jams, pollution and double parking which was such a problem last year. In addition, all visitors will be limited to a 45 minute stay per day. We will provide you, as best we are able, a list of expected visitors along with notarized credentials, family and employment histories and personal financial statements. Any alcohol or drug testing will have to be at your expense.

3) I was not aware until reading your note, that our children were, as a group, so uncontrollable and obnoxious. We thought they were only like that at home. The fact that we didn’t see our kids for four or five days may have been a contributing factor. We gave them a fistful of cash and told them to have a good time. From the sound of it, they did. To prevent any recurrence we will take the following steps:

A) A pair of old-fashioned stocks will be assembled during our stay. All misdeeds will be punished. A little public humiliation and corporal punishment will go a long way.

B) Morning classes will be held daily, Monday through Saturday, for all children. Attendance will be mandatory and we will cover the subjects of deportment, diction, proper grooming, vacation etiquette and zone defense.

C) We will be bringing our own swingset, slide, jungle gym and basketball set to make sure your equipment is not over-used or abused. We will also cover our share of your annual depreciation. We also have a lot of balls.

D) An officer of the day will keep a log of the whereabouts and activities of all children. The kids will not be allowed to congregate in groups larger than three. Before swimming or using any of Beechwood’s equipment, each child will be checked for proper attire, proper attitude and for double knotted bathing suits.

E) All children’s mouths will be washed out with soap upon arrival to discourage improper vocabulary.

In closing, thank you so much for inviting us back. It’s a shame that Tom and Virginia never took such an active interest in the happiness and wellbeing of their guests. If they had only had the vision to turn Beechwood into a politically correct, new age yuppie boot camp, just think of all the fun we could have had over the last seven years.

Sincerely, Michael and Renee

And that was that. We found a new place to go that year. Eventually a core group of people bought a place similar to Beechwood nearby on one of the other lakes. We weren’t financially able to be part of that deal as it would’ve limited our ability to do other traveling. And our son who grew from a toddler to a pre-teen needed a change. Our daughter started as 7 year old and left on the verge of her driver’s license. I still am in touch with a number of those special family members with whom we shared so much. I ended this stinky day with a sense of the richness of my life and my continued adoration of my feisty and entertaining husband. A lot can happen in just 16 hours.

Indoor Days

I’ve been waiting for the arrival of the indoor days. I have to prepare mentally for them because I’m an outside addict. I’ll always choose outdoor swimming over indoor swimming. The hours I spend in my garden, headphones in my ears, digging in the dirt, consistently override my attending to indoor tasks. There’s no doubt that my garden is better looking than the interior of my house.

I guess I feel most comfortable out there in the living dirt. I’ve been like that since I was a little kid. I can do without the dead inside dirt. Dust on shelves is so much less interesting than the soil that grows life. Besides, I love sky and clouds. Ceilings don’t cut it.

I adore the midwestern fields which, after many years of living near them, are now converted by my imagination into the shorelines of my youth. I loved living near Lake Michigan. That beautiful place, along with my precious ocean and lakeside vacations, restored me when I needed it. Toes in the water, eyes fixed on an unbroken horizon always provided a sense of perspective for me about where I stood in the chaotic world.

For me, perspective is a necessity. The corn and soybeans rippling in a soft wind have replaced that water; they are easily accessible, practical and provide the same balance as a shoreline does. There is no body of endless water where I’ve lived since I was a teenager. I learned to live by the adage, “adapt or die” a long time ago. And so I have. During the outdoor months, I’m busy looking up at the clouds or down at the earth, chasing insects, butterflies and bird calls, driving through the countryside hoping for glimpses of animals, admiring all that grows. The rest of the time, I’m digging in the dirt, hurling new plants into the ground, hoping for the best, and battling my weeds, one handful at a time. But living where I do, where inclement weather is a fact of life, I always know that it’s only a matter of time before I’ll be swimming at the indoor pool, comforting myself with the avian crew who know I’ll be faithfully supplying with seed and suet, and finally, reluctantly, turning to the inside chores I’ve learned to ignore for the most part.

As I’ve gotten older and become a widow, I’ve gotten worried about the accumulation of stuff in my big old house which has been home for over 41 years now. No matter how minimalist I wish to be, the nagging thoughts about preserving history for my family remains strong and is in direct opposition to the downsizing I’m trying to manage. In the years of Michael’s illness we talked a lot about getting rid of things. And we did.

We donated hundreds of books. We sold thousands of vinyl albums, CD’s and posters accumulated over a lifetime of music loving. But now he’s gone and I’m left with this huge task. The biggest fear I have is overloading my kids with all the debris they didn’t accumulate. I remember that each time I moved my mother, I couldn’t believe how her possessions seemed to multiply. My sister and I held a garage sale when we moved my mom from her apartment into my house. A woman showed up and was perusing the merchandise. She asked who we were moving and when we said it was our mother, she told us that it took her three solid months to empty her mother’s house when she died. She was so tired and overwhelmed that she didn’t keep a single item. I never forgot that conversation. Then there are all the articles with names like, ” Your Kids Don’t Want Your Junk.” Hmm.

When my daughter got her own house, I dispatched her stash of memories directly to her. Chore one done. My son is still afloat in the universe so although he thinks he’s traveling light, there are multiple large plastic tubs which contain his important treasures. So I try to turn my attention to what’s left of mine and Michael’s personal items. I’m making slow progress. I’ve done well with clothes and have dug through lots of papers and documents. Found this sweet little note today.

More turn up in the most bizarre places. I’ve recently disposed of years’ worth of medical records. But not before I took some photos of some of the impossible numbers that we dealt with during Michael’s cancer siege. I know they were inflated and felt lucky that our co-pays were capped. But I needed to save a remnant of what we had to contend with, what most people in this country have to deal with, when they’re coping with the tremendous emotional stress of a terminal illness.

Looking at things like that sends me to the windows or my porches to see what’s going on outside. We’d been having a lengthy fall when suddenly, winter arrived with blasts of cold and snow. The trees, flowers and shrubs weren’t ready. For me, a little more “out” provides a nice break. But back to the indoors.

I knit for awhile. I’m a lazy knitter, choosing to pick a pattern and then mindlessly produce row after row, making scarves and afghans, doing something while doing nothing. I try distracting myself from the dark politics of the world by watching old television shows. I read a lot.

I’m not ashamed to admit that I have every season of “ER” on my DVR. I was always a John Carter fan, immune to the obvious charms of George Clooney. I watch old Errol Flynn swashbucklers, too. My diversions are not bad things, but they don’t do much for my list of chores. So I decided to tackle one, winnowing out my jewelry. Usually I only wear a few pieces, over and over. I adopted a merciless rather than sentimental attitude and started going through everything, creating a pile that could be given away. But then I found a really cool piece which was part of a great memory.

Michael and I never had a honeymoon. It seemed a bit irrelevant after having lived together for four years before we got married. But on our 15th anniversary, we took a delayed one to Cayman Brac, the mid-sized island of the three Caymans, population slightly over 2500. Michael wanted to scuba dive and I snorkeled. I rented a car while he was below the water, feeling very proud of myself as I drove on the wrong side of the road in the wrong side of the car. There was a jewelry craftsman selling his homemade pendants in the middle of the countryside. I paid $10 for an oval piece and he gave me a chunk of unpolished rock as a souvenir. Making a lot of progress in my household tasks is significantly slowed down by things like this.

I also found this horse’s head tucked into my jewelry box. The only remaining token I have from what was a gorgeous glass carriage drawn by six prancers, it was a gift given to me in 1969 by my first love for some holiday. I was at my parents’ apartment when he presented it to me, wrapped in layers of paper and plastic. I was dazzled by its beauty and its implied intimacy. This talented young man had written a fable about our tempestuous relationship in which my personality was characterized by a wild horse he called Stormy. We went out after he gave it to me. When I came home, my mother was distraught because a crazy cat I’d brought home from college had leapt from a tall shelf straight into the box on the table, shattering the carriage into what looked like a bazillion pieces. I was so sad that I missed the metaphorical implications. I needed two more years and my friendship with Michael before I realized that I was in a toxic situation which the crushed pieces foreshadowed at that time. Anyway, I’ve had this lovely shard with me for fifty years, to remind myself that life could have gone another way for me.

I think the indoor days need to go on for a long time this season. I find myself in deep retrospection frequently. That makes my aversion to the tasks ahead of me even greater than usual. I still feel pressed for time. I want to do everything I can do while I’m still able. I’m keenly aware that barring an unexpected health issue, I’ll soon be finishing my seventh decade on this earth. Michael so often said he wasn’t ready to leave when he was dying, that he still had so much to do. Here I am over two and a half years after his death, still feeling his emotions and replicating them, despite the much better fortune I’ve had. We’ll see what I get done. My kids say I should forget about all this extra work and just enjoy myself. But I’m compelled to take this walk through my life and ponder it all. I’ll let you know how it goes.

Be 278 – Chapter 4 – 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.

Be 278 – Chapter 3 – 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.

Be 278 – 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