In my work I have often prided myself at being able to look at a project and know from the onset if it would be a success or a failure. This same projecting into the future and imagining what will be has always been a part of my life. I can often look at a situation and see the key outlines or framework of what it will be in the future, even if I can not see the details.
When I learned of my wife’s cancer in September of 2016, I quickly saw the outlines of what the next year would be like. As time progressed and we learned more about the diagnosis and I was able to read more about her cancer, more details and the major elements of the future began to come into focus.
Within a few minutes of learning that my wife had been diagnosed with a ‘mass’ in her abdominal area I knew that I would be committed to do whatever I could to help her. While the full diagnosis took a biopsy and a few more weeks of analysis, we knew rather quickly that she had a rare retroperitoneal liposarcoma. What we learned in the following weeks was that it was a very aggressive subtype of the cancer that was invasive and hard to treat. I did not want her to die. I also knew the toll it would take on my personal life as I actively supported her treatment.
I remember trying to tell my partner, shortly after my wife’s diagnosis, how invasive her cancer would be in our lives for a long time to come. Initially I think he thought her treatment would be relatively quick, but I already knew differently. Even as I made the commitment to myself to help her in whatever way I could, I also knew that it would be months, if not years, of having my life turned upside down.
As I have written previously, she had the tumor removed in late November 2016, but by mid-February 2017 we learned the cancer had returned and spread to other parts of her body. As I look toward the future I do not see any good outcomes. I have read the medical journals and looked on sarcoma websites that describe this rare cancer and I know the odds for her survival are terrible.
A journal article I read this past week said that the likelihood of a high grade dedifferentiated retroperitoneal liposarcoma reoccurring after the initial tumor surgery was about 83% and there was a 30% chance it would spread to other areas of the body like the lungs within 3 years. While I had read similar articles last Fall, I imagined we had a few years before the cancer would return. After only three months from the surgery to remove the tumor she began to have increasing pain. A CT scan three weeks ago revealed that the cancer had not only returned on her liver and retroperitoneal area but it has spread to her lungs and her retroperitoneal lymph nodes. She is now undergoing chemotherapy.
I have also read a number of journal articles about the use of chemotherapy for retroperitoneal liposarcoma’s and the effectiveness appears to be around 20%. Not good. If the two chemo drugs she is receiving now do not stop the growth of the cancer there are two other drugs the doctors will try, but the next two drugs will have many more side effects. Yes, she could be one of the 20% for whom chemo is effective, but she has increasing pain, which to me suggests to me that the cancer is continuing to grow.
A medical journal article I read this week comparing the effectiveness of the two chemo drugs she is taking to the effectiveness of taking just one of the two drugs, the results are dismal. The response rates for the chemo combination was 16% compared to 8% for just one of the drugs. The median survival rate for the two drugs was 6.2 months compared to 3.0 months for just one of the drugs. More than likely that the cancer will continue to grow and spread.
When I think about the year to come, none of it is good. I can see her in increasing pain and weakness and eventual death. I envision only a very small chance that chemo will be effective.
Her brother and I have talked about hospice and palliative care. He believes that we will be facing palliative care in the near future and I can not really disagree with him. I do not know when she will die, but I envision going through this process with her, our son, her family and my partner over the next year. I can envision the process of cleaning our and selling house and disposing of our belongings. It is all a scenario I once could have never imagined.
Should I move back in the house with my wife? I feel guilty that I am letting her aging parents care for her and that I am not there on a daily basis to help. If I did not have a partner that I was committed to, I would consider moving back in the house to help support her through this process. It may get to the point that I will need to stay in the house for extended periods of time but I am not ready to completely give up my new life. I am working hard to maintain my relationship with my partner and at the same time working hard to navigate my wife’s care with her doctors. I plan to lighten my load in the coming weeks to make more time to be there to support her.
I also need to find a way to tell my son the future I see coming without having him emotionally see his mother in the grave. It is a delicate balance thinking through what to say to him. We need to continue to have honest and direct conversations. I need to find a way to prepare him for what I suspect is coming for his mother so that he can make the right decisions about what he needs to do for his own life. I do not want him having any regrets.
I believe that you face these difficult situations head on and act in a way so that you never have to say later that you wish you had done more.