Hospice

Mark enrolled in hospice this morning. His pain and fatigue levels have increased substantially within the last 7-10 days, and his appetite has dropped off. We had always considered, even recently, that hospice was something we could hold at arm's length. Now that it is here, we know we perhaps should have invited it earlier.

It is anticipated at this point that Mark will be with me, with us, for only a few more weeks, perhaps until the end of March. The news is shocking, unanticipated, sobering. and utterly devastating. I am sharing because I know there are many who would like to know. Thank you to all those who hold a special place in your heart for Mark, for us and for what he and I have shared on this wonderful 4-1/2 year-long adventure. 

San Francisco Vignettes

“You’d probably be dead.”

We were having dinner Friday night at an Italian restaurant in the Castro with George and Lee, new friends whom we had met on our Croatian gay cruise in September. They had invited us to have drinks in their stateroom and to join them for dinner with some of their friends. Mark and I had been feeling down that night, depressed about Mark’s cancer. Their invitation saved the evening for us, and we greatly enjoyed our time together. Before the cruise ended, they had asked us to contact them if we ever came to San Francisco, and we had arranged to have dinner together Friday night.

We had been talking about coming out, their stories and our stories. They’re both about my age, and it was fascinating for me to hear what life had been like for them when they were young, While I was working for my father’s company in Zanesville, Ohio, heavily closeted but desperate for friendships and relationships, George had arrived in San Francisco. He told us how one of his first jobs in the city before going on to dental school had been working as a dental assistant across the street from where we were eating.

“I started keeping a list of people I knew who had died of AIDS,” he explained. “but I stopped counting when the list reached 100 names. I was lucky. Chances are very good that if you’d come out as a young man, you’d probably be dead now.”

Mark and I had often said the same thing to each other, partly to ease the regret we sometimes felt at not living our life out loud during those youthful years. This was the first time we had heard it from someone else’s mouth, and it felt strangely comforting. 

*************

“Are you guys monogamous?”

We had finished dinner and had just said good-bye to Lee and George on the sidewalk in front of the restaurant. Across the street, several bars were full of Friday night customers. 

I turned toward the source of the question and saw a slightly overweight blond woman who appeared to be in her late 30’s or early 40’s. It was immediately obvious that she had been drinking rather heavily. I could have taken offense to her very forward question, but I had been drinking as well and was in a pleasant, warm mood.

“Yes,” replied Mark.

“Cuz I was over there,” pointing to the bar across the street,” and I was talking to guys who have been together for years, but they have sex with other men.”

“Not us,” said Mark.

“You know,” veering of onto another subject, “I’ve lived in San Francisco for years, but I’ve never been to the Castro. It’s amazing.”

At this point, Mark preoccupied with ordering an Uber, walked a few steps away into the street, leaning heavily upon his walking stick.

“Hey,” the woman called out, “how come you’re using a cane?” I think Mark had had enough by this point, and he ignored her walking a few more steps away.

Again, I could have taken offense, but I decided just to be honest. “He has cancer,” I said. The woman’s demeanor immediately changed. She looked directly at me, compassion in her eyes.

“I lost my husband to cancer,” she said, her gaze sliding down toward the payment before looking back up. “How long?” she asked.

“Four to six months,” I replied. 

She didn’t say anything, but she immediately reached out her arms, drawing me – a total stranger – into a warm, firm hug. We held each other for several seconds before she released me, drawing back and saying, “I’m so sorry,” she said.

“Thank you.”

By then, Mark had walked back over. The Uber car was drawing up on the other side of the street. The woman turned toward him.

“This man loves you,” she said to Mark. He hadn’t heard the recent conversation and seemed irritated by her forwardness. “I know,” he muttered before turning around.

I started across the street before turning back toward the woman. “Thank you.” She was wiping tears from her cheek. I waved. She waved back. Then I stepped into the car and we drove off.

Changing the Landscape of Cancer

Mark and I have entered a new space in the landscape of cancer. It began last week after returning from a vacation in Maui when we found out that Mark's PSA had jumped a full point over the past 4-5 weeks. Then came the sharp hip pain that manifested last weekend.

We talked to Mark's oncologist on Monday. On Wednesday morning, we drove to LDS Hospital for a bone scan. When he was first diagnosed, a lesion had been discovered in Mark's hip. This lesion, which had previously been contained, was now shown to be growing and active.  In addition, a new metastasis was discovered in Mark's neck that will require further investigation (MRI) next week.

We have always known that a day like Wednesday would come, but we didn't know how and when we would arrive at that day. The landscape of Mark's cancer has changed: he has now become symptomatic, the cancer is growing, there will be new drugs. And we will wait. 

Meantime, however, we intend to live life as fully as we can.

Our Teenage Son's First Blog Post - About His Gay Dads and Depression

Our soon-to-be sixteen year-old son wrote and published his maiden blog post today. With his permission, I am sharing a link to the post. He writes about coming to terms with his dad's sexuality, Mark, Mark's cancer and the depression that he struggles with. It is well worth reading. 

Here's the link.

Our Daughter's Thanksgiving Tribute to Mark

We have a new tradition in our family. Every Sunday morning on weekends the Quads are with us, we walk a couple of blocks down to Sharon's Diner in Holladay to have breakfast. We know our usual waitress by name, and we are recognize as "regulars." It's so nice for the kids to have that experience - of going somewhere where somebody knows your name and where the waitress already knows what you want to drink and what you usually order.

This past Sunday, our daughter Rachel brought her camera along. She is an extremely talented photographer and videographer, and she produced a video about that morning. Out of the simple, she creates meaning and loveliness. She surprised us yesterday by sending a link to the video she had just completed. With her permission, I want to share it with friends, family and whoever else reads this blog.

This is what Rachel wrote in the email containing the link to the video:

"As you know, the song choice is the hardest. Throughout watching the footage, I couldn't help but think of Mark's diagnosis and the good news you just got on Friday. I realized when I watched the footage that the video captured a simple moment: a family going out for breakfast. But I felt like it was so much more. It captured, I think, the love we all feel for Mark, and the sense of 'family' we get from being around him. Hence why I chose the song, even though not all the lyrics apply to him (you'll see what I mean when you see it)"

Here's the video:

Thank you, Rachel.

The Landscape of Maui ... and of Cancer

We got back on our bikes yesterday and rode the half-century (50 miles) that we had planned to do the day we ended up going on our 75-mile odyssey. The route took us up past Lahaina to Napili, where we turned around and headed back.

We took these two pictures at our turn-around point

We had a bit of a headwind heading up the coast, but there was also a strong crosswind coming down out of the mountains. So, our ride back was also fairly challenging at times. Nevertheless, it was a beautiful sunny morning. The lead photo, above, was taken just as we were heading back into Lahaina, and the one below was taken further down the coast.

The most interesting incident of the ride, apart from trying not to get blown off our bikes near the end, occurred when we went through a tunnel (pictured below) a few miles from our starting point.

This is an older picture, taken from the Internet. They now have caution lights that cyclists can activate on either side of the tunnel. On our way back, Mark stopped to activate the light while I proceeded cautiously into the tunnel. About halfway through, I spotted something lying directly across our path, and it didn't take long to identify what it was - a pitchfork. That was a first. 

We made it to Little Beach around 2:00 and spent the rest of the afternoon there. It was sunny and hot, making the ocean that much more refreshing.

It has been a wonderful day, but - like many days - something happened that reminded me that Mark has inoperable cancer. Even though he cycles and is in excellent health (except for the cancer, that is), I am constantly aware (some days more than others) that the day will eventually come when he will no longer be able to do this. Every day becomes precious, but occasionally things happen that make me remember this.

Like yesterday. It was a little thing. We had toasted each other with our traditional cocktail on the beach and, for some reason which I now no longer recall, we reached out our left hands to look at our wedding bands - and Mark's wasn't there. I felt like I had, somewhere inside of me, fallen through a trap door. As irrational as it was, the thought of Mark having lost his ring sent me into panic mode. The symbolism was too strong, and it momentarily overwhelmed me. I felt like something precious - the memories of choosing the rings in San Francisco, the memories of our commitment ceremony, the many times we had held out our hands to look at our rings - were suddenly gone. As I say, the symbolism was too strong, and it deeply effected me.

But Mark said he thought, he was pretty sure, he had taken his ring off and set it on the bedside table - that it wasn't lying at the bottom of the ocean somewhere. Sure enough, when we got back to the condo and looked, there it was.

It was such a little thing, yet not a little thing. This is the landscape of cancer. My landscape. Our landscape. Even though we are in Maui for three weeks and have plans to do more traveling, we know that the day will come when we will not be able to do this. We are making memories. We are spending precious time together. We are making up for decades of not being together, of living in our respective closets for most of our lives. 

People have sometimes said to Mark, "Wow! That's great that you are able to do this traveling, etc. I'm envious." Though he doesn't verbalize his response, he sometimes thinks in his mind, "Yeah? Do you want to trade?"

Family: It Gets Better

This past weekend, I made a quick trip to Vancouver to visit my daughter Hannah, her husband Cary and their little girl, Hazel. Mark was supposed to accompany me, but he had to stay in Salt Lake for a cancer treatment.

I wrote about recent developments in Mark's cancer 10 days ago. A decision was made shortly thereafter to start Mark on a new therapy that, due to timing considerations, would have to start immediately. It would consist of three treatments, spaced two weeks apart, each treatment consisting of two stages. Mark's first stage of the first treatment was scheduled for last Friday and the second stage was scheduled for the following Monday. We had already booked our flights to Vancouver, so a decision was made that I would go alone, then come back a day earlier than planned so that I could be there for Mark's treatment on Monday. I am happy to say that the procedure went very well with no side effects for Mark.

So, my time with my daughter and her family was short, but oh so sweet. I've thought all week about doing a post about my visit. Then, today, I reread something I had written in my journal during the middle of my divorce. It was one of the low points, but so, so illustrative of that whole process - divorce, me coming out, the effects on our family, etc. 

My lawyer and I were waiting for the second and final mediation in the divorce which resulted in a final agreement between my ex-wife and me and, in due course, the issuance of a divorce decree. I saw my ex-wife and her attorney come in and sit in the opposite corner of the large lobby. After a few minutes, they walked over toward us. 

I had previously expressed to my ex-wife that I thought the personal animus that her homophobic attorney (whom I had dubbed "Mr. Toad," in lieu of another four-letter word that begins with "T" and ends in "D" and rhymes with "bird") had obviously shown toward me was doing her a disservice. So I was surprised, but not too surprised, when he walked up and said (among other things) the following: 

"I have been informed that you think I have a personal dislike of you because of your sexual orientation. That is not true. I feel the same way about you as I would if you had taken up with a woman, leaving your wife and ten children after 25 years of marriage."

Slam. Of all the things that were said to me and about me during our divorce process, that was the vilest - and the most improper, especially coming from a member of the bar. And it was a lie. I did not "leave" my marriage to "take up" with a man. I came out to my ex-wife, unexpectedly, when our marriage was on life support, and she asked for a divorce. There was no man with whom I had "taken up." 

Nevertheless that characterization was propagated in my situation, and it is also unfortunately the type of assumption to which people (especially those who are LDS) leap when they hear of a married man coming out as gay. I thought about this while running the recent series of posts concerning mixed-orientation marriages.

There were many times during those dark days when I wondered how many of my children I would lose. I knew our family would never be the same again, but I couldn't say back then what shape it would take in the future. I hoped it would get better, but I had no assurances then, other than my faith in my children.

But it did get better. Way better. And my recent trip to Vancouver brought that home to me - again. 

My wonderful son-in-law holding Hazel

Most of the foregoing pictures (and all the good ones) were taken by Hannah. It's hard for me to express what I felt as I saw them for the first time and what I have continued to feel as I look at them. They captured so much love - in Hannah, in Hazel, in Cary and in me. And, for me ... well, this is particularly difficult to express. For so much of my life, I have had a negative self-image and I believed so many things that other people told me about myself. These pictures, for me, give the lie to those things. 

My family continues to evolve as my children evolve. I am grateful for each of them. I love each of them. It got better, and it keeps getting better. I am truly a blessed man. 

The Landscape of Cancer

This blog was initially a private blog where I could share things with some of my family members and friends. I haven’t written much lately about my life "real time," but recent events have prompted me to write this post. I feel like I need to do it, for me and for those close to me.

The last time I wrote about Mark’s cancer was at Thanksgiving. “Though I cannot say I am grateful that he has cancer,” I wrote, “I can say that that I am grateful for some of the blessings that have come into our lives as a result of the cancer. I am grateful for the more profound love that has grown between us and for the way in which we have grown, together. I am grateful for the way Mark has drawn closer to his family and they to him and the way in which I have been drawn more intimately into that family.”

(For those who read this who may not be aware, my partner Mark was diagnosed with advanced stage prostate cancer in early April last year. It was over three months before I could write about it, which I did here.)

At that time, we had every reason to believe that Mark’s hormone therapy was working. But the next time Mark’s PSA was tested, at the end of December, it showed a rise, almost double the amount it had been in early October. A week later, Mark’s urologist prescribed additional hormone therapy medication that was intended to “bootstrap” the semi-annual Luperon shots he was receiving. Mark’s PSA would be tested again at the end of January.

It was. Once again, the PSA level had not quite doubled, but it was close. A sense of impending doom settled over us. But when we went to the urologist a few days after the test, we were given reasons to hope and to remain optimistic. There were other therapy options. It was time to see an oncologist.

Mark has from the beginning not been a cancer "fighter." As a hospice physician, he has had much experience with people who suffer from a terminal illness. Even before he was diagnosed, he believed that the journey toward death should be as peaceful as possible and, in the end, as comfortable as possible. Death for his patients was ideally at home, surrounded by loved ones – not in an emergency room or in an intensive care unit where death is fought with every option available to modern medicine.

In many cases, Mark has told me, it is not the patient who fears death, but his or her family members who are afraid to let go, who feel they have a moral obligation to do everything possible to prolong life, regardless of what that may mean for the patient’s quality of life. “These people,” Mark has told me, “need a protector.” Someone who can hold firm against the tendency of loved ones to want to paddle against the current as hard and as fast as possible as the waterfall of death is approached. 

So, from the beginning, Mark has made it clear that, though he wants to stay as long as possible, he does not want any part of that stay to be characterized by futile efforts that cause him pain and suffering.

Because, you see, Mark’s cancer is incurable.

That eventuality, from the very beginning, has hung over us (but here I speak for myself) like a sword of Damocles. We didn’t know at the beginning how much time Mark would have, and we still don’t. And at the end of January, I could tangibly feel the presence of the sword.

We met with Mark’s oncologist early last week. He was blunt. It was time for new therapies, the purpose of which is to contain the cancer as long as possible. The first, a series of treatments, would start immediately. It’s not chemotherapy, thank God, and we were told that side effects should be minimal.

While we were there, Mark had some blood drawn. A few days later, the oncologist called, concerned about one of the markers. It was possible that the cancer had spread. A CT scan was scheduled for later that day, as well as a bone scan. 

Mark was at a meeting when he received the call. He texted me. I felt like my world was collapsing – again. The fear that I am usually able to keep at bay rose up, temporarily choking me. It was one of the most frightening moments I have experienced since Mark was diagnosed. I could almost feel the whoosh of the sword passing over my head. My mind was filled with “what if’s”: What if the cancer has spread? What will that mean? What if this changes everything? What, what, what …

The scans were done last Thursday afternoon, and it was late Friday when we received the news: the CT scan was clear, the cancer had not spread, and the bone scan showed a reduction in size of cancerous masses that had been identified last spring. “Things look good at this point for the next 6-7 months,” I wrote my children and sister. “I’m learning,” I continued, “and have learned, that in the cancer landscape, one takes each day as it comes, focusing on the present 'what is,' rather than on the future, 'what ifs.'

The landscape of cancer. I sat down this morning to write in my journal about this subject, and as I wrote, the well-known quote by L.P. Hartley came into my mind: “The past is a foreign country; they do things differently there.” I/we are now in a foreign country. We have been for almost a year. It is the land of cancer. And things are different here.

I talked about this yesterday with my counselor and was enlightened by our discussion. I wrote about it this morning in my journal:

“Cynthia talked about surrendering to the cancer, by which she meant – I think – that I/we have to accept that things are different now, that they won’t ever get back to ‘normal.’ She said our lives ‘are being lived by a story of cancer. It finishes every sentence. It is in our first breath as we wake in the morning and in our last breath as we fall asleep at night. This is the nature of the landscape of cancer.’ 

“I was struck by her use of the phrase ‘landscape of cancer,’ because I had used that very phrase only a few days before when communicating with the children. The landscape of cancer. We have, so to speak, left the Shire – permanently. We have entered a new landscape that must be crossed, explored. In this land, they do things differently. We are seeing and will see thins we have never seen before, experience life differently that we have before, and feel things we have never felt before.  

“Cynthia encouraged me to not fear the feeling of losing myself on this journey, which will be, she said, ‘transformative.’ I was reminded of Jesus’ saying about losing oneself in order to find oneself. ‘There is no teacher like Death,’ Cynthia had said. ‘Once you have experienced Death closely, you will know Life closely.’ 

“We have now come to a bend in the road in the landscape of cancer, a road that has led into some foothills. We can no longer see the Shire, and that creates angst – an angst, like many other aspects of the world of cancer – that will not dissipate anytime soon, if ever.”

Meanwhile, I keep trying to keep my focus on what "is," rather than on the "what it's."

Rocky Mountain Thanksgiving: Grand Lake and Good Times

Mark and his sister Sarah in Grand Lake

A moose nativity set? Who knew?

On Saturday, I learned that there is such a thing in this world. Also a bear set. Maybe I don't get out much, but I've never seen nativity sets like these in a creche display:

Which is probably a good thing.

This was one of our discoveries on Saturday as a group of us headed up to Grand Lake under gorgeous clear blue skies to do some browsing and get a bite to eat. Others of the clan set off to go skiing again.

Shops galore

The whole family gathered one more time Saturday evening to eat leftovers, talk and laugh.

Ajax (one of our dogs) was in heaven on Grandma Koepke's lap

Violet (our other dog) also got lots of affection from Sarah

Rick, Mark's brother-in-law, his son Andrew and Mark

Mark talking to his grand-nephew, holding Ajax. Mark really bonded with Gavin, as he had with Gavin's father David - even though Mark once put dozens of baby frogs down David's swim suit when he was about Gavin's age.

Andrew and Gavin and Violet

Gavin is transfixed by Andrew's ability to cross his eyes

Stuffed, once again

Though the quality of this picture is horrible, it captures the good time that Mark's nieces were having

I'm grateful to be part of this marvelous extended family. I've now met all but two of Mark's nieces and nephews. They're all great people, as are their parents. 

It was a wonderful weekend, all the sweeter because we don't know how many more Thanksgivings Mark will be able to enjoy, due to his cancer. Though we don't often talk about it, both he and I know that we don't know what the future holds. Each day - and especially each holiday - becomes precious. There may not be another Thanksgiving, another Christmas, another family gathering like the one we experienced last weekend. 

Then again, there may be several more. Or I might get hit by a truck tomorrow. Realizing this, we focus by necessity on the present, the now. Because that is where our life happens.

Thanksgiving Reflections

Family picture taken this past Saturday by Katrina B. Anderson

I wasn't going to write about "what I'm grateful for." This has always seemed a bit cliche to me. Like New Year Resolutions. But as I sat down to write in my journal this morning, I decided that it would be appropriate to reflect on what has happened during the past year. And I'm glad I did. I learned some things.

View of Granby, Colorado this morning from our hotel room. It was 9 degrees at the time this was taken.

My Personal Growth

This time a year ago, I wasn't, in a number of important ways, in a very good place. Frankly, I was in a dark place of depression. The recent Circling the Wagons conference (for LGBT members of the Mormon community and their families and friends) had been surrounded by controversy and negativity that had deeply effected me. 

I was floundering professionally, trying to determine whether I should simply give up on the practice of law or go into a different line of work. Eighteen months of unemployment had taken their toll. My personal finances had continued to deteriorate.

I was also floundering emotionally. Phantoms from my abusive childhood haunted me. I broke down completely over Thanksgiving weekend last year. Dark thoughts seemed to swirl around me.

For quite some time, I hadn't thought about that time in my life a year ago. It was a revelation to me this morning as I sat down to write in my journal how far I have come over the past year. A big turning point came last December as I met with my counselor and, together, we faced some hard things. 

I realized that I needed to leave behind my lingering associations with all things Mormon. It was simply too painful - on numerous levels - and it certainly wasn't healthy. It was also at this point that I surrendered to certain other realities in my life and gave up the suffering I was incurring because I had tried to pretend and act like those realities weren't there or could be changed. As Eckart Tolle has written, what one resists, persists. Others have put it this way: Let go or be dragged. I let go.

Today, I am in a very different place emotionally, psychologically and spiritually. And I'm very grateful for that. I'm grateful for all the growth I have experienced over the past year. I'm grateful that ghosts from my childhood no longer haunt me. I'm grateful that I feel more in touch with myself than I ever have. I'm grateful to be on a spiritual path that I feel originates from within, rather than being imposed from without; a path that I feel is nourishing and healing me.

For all of this, I am grateful.

My Children

Much wonderful and good has happened this past year with respect to my children. A beautiful baby girl has come into the lives of my daughter Hannah and her husband, Cary. As a result, Hannah has experienced much growth and wonder this past year. I'm grateful for this growth, grateful that Hannah and I are as close as we are, grateful for the things we have shared with and taught each other, grateful for the good health and material well-being that Hannah, Cary and Nutella enjoy.

I'm also exceedingly grateful that my daughter Rachel has come back into my life, and I into hers. Her absence, as well as that of two of my other children, had left a huge hole in my heart. There has been much healing and growth that has come from pain, and I'm so grateful that Rachel and I are now  probably closer than we've ever been, that she has been able to spread her wings and enjoy freedom and happiness in Philadelphia, and that Mark and I were able to visit her a few weeks ago. 

Rachel at Brandywine Museum a few weeks ago

I also grateful for the growth that others of my older children have experienced over the past year. Seeing and hearing of this growth has given me hope that they are, each in their own way and in their own time, dealing with the trauma that has shaken and hurt each one of them over the past several years - and that they are emerging as stronger, more healthy, more whole individuals. 

I am also grateful for the love I feel for each one of them and for the love that I feel from them, and the knowledge that I have that such love can never be taken for granted; and in this regard, I remain thankful for the hope that remains kindled that the day will come when a reconciliation will occur with my two children from whom I remain estranged. 

Of course, I am grateful for the Quads and for Nathan and for all that we have been able to experience over the past year. I'm particularly grateful for the Disneyland trip that Mark and I made with Aaron, Esther and Levi in June. And for the trip that we make with Nathan in July to Maui to attend the Koepke family reunion.

Nathan with "Grandma Koepke" on the beach in Maui

Mark

I am grateful for every day that I have with Mark. Almost eight months ago, he was diagnosed with advanced prostate cancer. The prognosis at that time looked very grim. I am grateful beyond words to express that his hormone therapy is working, that he remains healthy, vigorous and strong and that we have been able to create many lasting memories over the past months. 

Though I cannot say I am grateful that he has cancer, I can say that that I am grateful for some of the blessings that have come into our lives as a result of the cancer. I am grateful for the more profound love that has grown between us and for the way in which we have grown, together. I am grateful for the way Mark has drawn closer to his family and they to him and the way in which I have been drawn more intimately into that family.

I am thankful for our commitment ceremony in August. For the love that was so powerfully felt there. For the fact that eight of my children chose to be there. It was a night I will never forget. I am truly grateful to Mark, to my angel sister Martha and her husband Koen, to my children, to Mark's family members and to all of our friends who were there to add their energy, love and light to that marvelous evening.

And I am grateful that, as a result of the Supreme Court ruling in June, that Mark and I can look forward to getting legally married next year and that we can (at least at the federal level) enjoy all the same benefits and status and recognition that straight couples enjoy.

Every Day

Lastly, I am grateful that I am grateful. I am thankful that I do not take life for granted. That I know that each day is precious. That each day brings opportunities and blessings. For much of my life, I couldn't truly say these things (a reflection of my own issues). Now, I can. And I am grateful. I am grateful for all the love and light in my life. I am truly blessed.