Tuesday, March 4, 2014

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."


  1. I'm so sorry to hear this, Joseph. My thoughts are with you and Mark.

  2. No adequate words to say here other than you two are in Jeff and mine's thoughts. I'm simply amazed a your ability to still take all of this in the way I read it and summarize it: focusing on the present 'what is,' rather than on the future, 'what ifs.'

  3. This is such beautiful writing, Dad. I pray for you and send my love to you and Mark, as always.

  4. Thank you, Rachel, on both counts. :)

  5. Thank you, UtahHiker and Miguel. I thought the time had come to write about this, and I hope I won't feel that way for at least another six months. ;) Love to you.

  6. Mark, I was diagnosed with cancer a year ago next week. While my cancer was quick and small, I want you to know I look up to you. I don't know you, but what Joseph writes makes me look up to you. It can't be easy but you act with grace and understanding. I am happy you have those who love you by your side.

    Joseph, thank you for sharing this very personal side of your life. I hope you both continue to find love and strength in each other.

  7. Thank you for your very kind words, Trevor. Mark thanks you and I thank you.

  8. My best to you and Mark as you both go through this. Mark stood up at my wedding and we worked together ski patrolling in Colorado. He is a healer...and the world needs more like him.

  9. My best to you and Mark as you both go through this. Mark stood up at my wedding and we worked together ski patrolling in Colorado. He is a healer...and the world needs more like him.

  10. Thank you, Sam. I agree: Mark is a healer. He's a wonderful man, and I'm lucky to be his husband.