Over five and a half years ago I came out to my wife as a gay man for the second time. The first time was shortly after we met twenty five years ago. After painfully wrestling with the kind of life I wanted to live going forward, I made the decision to move out of my marriage. My wife and I separated over three and a half years ago.
I rapidly rebuilt my new life as an out gay man and began dating and building community. A little over two years ago I began dating a wonderful man and our relationship continues to grow and flourish.
This past summer my wife and I agreed to move forward and get divorced, pushed along by my desire to be divorced before I moved in with my partner. After spending the summer talking to each of our lawyers, interviewing potential divorce mediators, and having a number of discussions about how we wanted to go forward, my wife and I selected a mediator and scheduled our first appointment for October 4, 2016. That appointment never took place.
At 5:15 AM on September 29, 2016, I got a call from my wife. She was in the hospital emergency room and a CT scan had discovered a mass in her abdomen. Shortly thereafter my wife of twenty three years was diagnosed with a very aggressive high grade dedifferentiated retroperitoneal liposarcoma, a rare and aggressive soft tissue cancer that grew rapidly in the space between her kidney, liver, intestines and gall bladder. I immediately began to help her navigate the labyrinthian world of cancer care and treatment.
After two agonizing months trying to understand her illness and to get her the right care, the tumor was finally removed in late November of 2016 at a top U.S. Sarcoma center. By the time surgery finally occurred, the doctor discovered that the sarcoma had been leaking “necrotic fluid” into my wife’s abdominal cavity. The surgery notes said that they removed three liters of necrotic fluid that had been leaking from the tumor. The doctor explained, in the family debrief following the 9 hour surgery, that the necrotic fluid was composed of “microscopic cancer cells.
By the time surgery occurred in November the tumor had grown from the 8-10 cm, measured in the September 2016 CT scan, to 30 cm and had invaded many of the surrounding structures. The surgeon removed her right kidney, two parts of her small intestines, a piece of her liver and her gall bladder, all which had been invaded by the cancer.
My wife was in the hospital for two full weeks following surgery and then recovered another two weeks in an apartment we had rented near the sarcoma center before she finally returned home in late December. After a long recovery and steady improvement, my wife’s life seemed to began getting back to normal.
As my wife began to get her life back, I felt that I could take a breath and again focus on my own life. My life had been put on hold for much of the Fall. My partner was incredibly supportive of me through everything we went through, but I wanted our life back. We had been discussing moving in together for a long time, and as things quieted down, we made the decision to move forward in the new year. We were both very excited. We found a house to rent, which we both loved. We put in an application, were accepted and were a day or two away from signing a lease for two years. Then I got a call that put everything on hold.
My wife had started to feel increasingly worse after a short period of feeling better. Her brother called me and asked me if I had spoken to my wife that morning. Because of the continuing and worsening pain my wife was in, her doctors nurse wanted her to go to an emergency room and get a CT scan. The nurse feared some kind of abscess or infection. I could not get the necrotic cancerous fluid that had filled her abdomen before surgery out of my mind and had long feared a rapid return of the cancer. I called the nurse to ask, “could it be new tumors?”, but was told no, that it was too soon for the cancer to have returned.
A CT scan at the hospital ER discovered that the cancer had indeed returned and had spread (metastasized) to her lungs and her retroperitoneal lymph nodes, nodules also appeared on her liver and in multiple places in her retroperitoneal area. The following week we were back at the sarcoma center. Her doctors determined that the next step would a chemotherapy regiment of two drugs, eight days apart followed by a short break and then two more treatments and then another CT scan. They told us that if the first four treatments of chemo did not work that there were two other chemo drugs that they would try.
I worry that this is a last ditch “Hail Mary” effort. Everything I have read about chemo related to liposarcoma’s describes a very low, approximately 20%, success rate. If the chemo does not work, what are the other options? Is chemo our only option at this point? Are their treatments for this kind of metastatic spread? I had a call with her doctor a few days ago who said we were doing the best, most aggressive treatment available, and encouraged us to stay the course. He said my wife needed to “power through” all the side effects of the chemo. He also advised against a CT scan too soon, even thought my wife seemed to be in increasing pain.
Thoughts keep going through my mind: If chemotherapy is not effective then we go to the second type of chemotherapy. If that’s not effective then what? Palliative care? How much time do we have? Is it a matter of a very short window before they let her die?
These are terrible questions. While her brother and I seem to be the most realistic and have read the most about this particular cancer, her sister and parents and our son live in hope. How much do I tell my wife’s family and my son that I suspect my wife will likely die? Do I let them come to the realization slowly over time that their daughter and sister and mother is likely going to die? Do I make it clearer to them an take away their hope?
What is the right thing to do here? What is goodwill for her aging parents? I’m not really sure. The easier way out is to let events unfold, since I have no perfect foresight of the future.
There’s a thought that comes to me repeatedly, that I did this. Somehow the agony and pain I put my wife through in coming out and leaving the marriage caused the cancer to develop. I do feel a level of guilt for where she is today. I wonder if I had never left, never come out, would the cancer ever have come? How does someone get an extremely rare cancer? There is no place to go for that answer. In my minds eye I see her doubled over in pain, but not the pain of cancer, the pain five and a half years ago when she learned I cheated on her with a man. I asked myself was that doubling over in pain somehow causing cells to malfunction?
Within the next year I face the prospect of managing her estate following her death. Shutting down our house and selling it. Of comforting my son and my wife’s family. It is not where I ever expected to be when I decided to come out and separate from my marriage five and a half years ago. These are large burdens to bear.
As I think about all the events that have happened, it’s very likely that by the time surgery occurred on November, the necrotic fluid leaking in the my wife’s abdomen for probably two to four weeks prior to surgery had already metastasized to other parts of her body. The tumors had just not appeared yet. The book was written even before she had the surgery. Why didn’t anyone on the medical team see this?
I have asked the surgeon’s nurse repeatedly since my wife returned home, given her increasing pain, could the tumors be back? The nurse repeatedly said, no it was too soon for the tumors to return. Clearly she did not see the whole picture. Why didn’t the surgeon, a top sarcoma specialist, who sees this all the time, know that the tumors had likely metastasized and would come back shortly? How come the team of doctors who worked with her, knowing that the microscopic cancer cells had spread throughout her abdomen, did not start chemo as soon as she was strong enough? Why wait for tumors to appear? Wasn’t it inevitable that cancer cells would and had spread? There’s a level of missing the obvious that is hard to fathom.
Meanwhile, before we knew any of this was going on, I was beginning to get my own life back which had been turned upside down for four months this Fall. My partner and I loved the house we were about to rent. We were going to put his king size bed in the master bedroom, which had both a walk in closet and two wall closets. I would put my queen size bed in the second bedroom which was smaller and had one small closet. I worried about the small closet and having my clothes split between two rooms. As two tall guys, we slept separately or we (really he), did not sleep. I imagined the parties we would give in the house and who I might invite. I could see where our furniture might go and how we might decorate it. I was getting very excited.
The night of my my wife ER diagnosis of the cancer’s return, I was overcome with a growing realization that I could not move in with my partner as we had planned? How could I manage my job, moving, and helping care for my wife in what is likely to be a terrible and difficult year?
I felt horrible that I needed to tell this man, who I loved and wanted to be with, that we would have to postpone this part of our lives a little longer. I also thought of how it would look to the world that I was moving in with my partner as my wife was dying of cancer. I knew what the new diagnosis meant: most likely tried and failed chemo treatments leading to death. How could we start our new life under this cloud? What a mess.
After leaving the ER I called my partner and took him through my thoughts about holding off moving in together. He was stunned but wonderful and supportive. It made me love him more.
I woke up a few days ago in the middle of the night and this thought came to me, God wanted me to have bigger closets. So we did not rent the house. The house we will rent in the future will have wonderful big closets for two men with large wardrobes. This year will play itself out and we will see where it all goes.