At the end of September, at 5:20 in the morning I got a call from my wife. “I am in the emergency room. They did a CT scan and found a mass in my abdomen.” “Do you want me to come to the hospital?” “Yes.”
I learned that my wife had been taken to the hospital by her sister-in-law the night before with a sudden sharp abdominal pain. A mass had been discovered sitting between her kidney, liver and duodenum, (the first part of the small intestines coming out of the stomach). I spent that day at the hospital from 6:00 AM to 6:00 PM, with her parents and brother. Her sister was traveling and had to be called. Our son was away at school, and my wife wanted to wait a few days before talking to him until we knew what we were dealing with.
That day began a frantic seven week journey. With a decision made at 5:20 AM in the morning to do what ever I could to help, I jumped into a role I had played in my marriage: taking charge; supporting my wife as she went though a difficult medical issue, (there had been multiple miscarriages; infertility treatments; an ovarian cyst); navigating doctors and medical staff; learning everything I could about the suspected diagnosis: retroperitoneal sarcoma; and being a rock in choppy seas.
I’ve written about the details of my life on this blog many times. I began to come out as gay man five and a half years ago and separated from my wife three and a half years ago. Through the most difficult period of my life I worked hard to remain friends with my wife and her family. I worked hard to stay close to my son, who was fifteen when I came out to him and seventeen when I moved out of the house. I worked hard to make sure that my son and I stayed friends and that I did not in any way put him in-between what was happening between his mother and me. I walked into my home many times over the last three plus years with my head held high to greet my wife’s family and friends during Thanksgivings, my son’s birthdays and other family gatherings.
For almost two years I have been dating a wonderful man. My wife’s illness has been a curve ball in our relationship. My wife and I were scheduled to start divorce mediation the week after her trip to the ER. In the moments after I received my wife’s phone call from the emergency room, I made the decision to do what every I could to support her. My partner has been incredibly supportive of me. I am grateful for his continued love and friendship.
I knew immediately when I received the call from my wife in the ER that my plans for divorce were put on indefinite hold. I also knew that supporting her in any way I could was the right thing to do. I wanted to be a mensch, Yiddish that literally means to be a “human being”. A mensch is “a person of integrity and honor”. I wanted to be a ‘real mensch’, a ‘stand up guy’, and to do what was right by this person who is the mother of my child and who was my best friend for twenty five years. I stepped into a central role to navigate her care with her brother; to support her parents and sister; to support my son; and to be as strong as I could.
The tumor was eventually diagnosed by a needle biopsy and a pathology report by a top sarcoma pathologist as a retroperitoneal dedifferentiated liposarcoma. This is a high grade aggressive cancerous tumor that sits between her kidney and liver and touches the upper part of her colon. It has grown rapidly in these weeks. Four and a half weeks ago the tumor was 10 cm. Two and a half weeks ago it was 15 cm. We do not know how large it is today. My wife has been in continuous pain, because the tumor appears to be pressing on nerves. She has been on round the clock pain killers for seven weeks. She has grown weaker as time has gone on.
So that brings us to today. We (my wife, her parents, sister, my son) are in New York City in a three bedroom hotel apartment. Tomorrow afternoon my wife is scheduled for surgery at one of the country’s top cancer hospitals with one of the country’s top sarcoma surgeons. It has felt like a very long road to get us to this point. We went through five weeks of wasted time with well meaning doctors in the Washington, D.C area, who in the end were not nearly as knowledgeable in her rare cancer as they needed to be.
Now we enter a new phase. After weeks of planning, searching, testing, radiology and blood work, false starts and stops, we are finally on the eve of surgery. All of our work to get her to this moment is done. We hope that the surgeon will get all the cancer, my wife will heal, and that she will move on with her life. What the surgeon will find during surgery is yet to be revealed. I have studied this kind of tumor for weeks, thought of all the possibilities, and know what could happen tomorrow.
When the surgeon opens her up he will need to determine what he is dealing with. Has the kidney been invaded by the tumor and does it need to come out? Does a section of colon need to be removed? Have any other structures been invaded and need to be removed? The surgery is expected to last at least four hours. It could be that in the three weeks since her last CT scan the cancer has metastasized and spread to her lungs or bone. It could also be that the surgery goes well, she heals, but a few cancer cells remain, and the cancer returns at some point in the future. For the rest of my wife’s life, she will need CT scans every four months, looking for the return of the cancer. Some of this will be know by the end of the day tomorrow. Some of this may not be known for years.
It will be a very long day tomorrow.