On Tuesday my wife got a port put in her chest for the two chemo drugs she started yesterday to treat her cancer. The procedure, which took place at a local hospital, was expected to last a hour. My wife and her parents were at the hospital for six hours. When I heard how the day was going I offered to make them dinner so they could sit down to a hot meal immediately upon their return from the hospital. I knew they would all be exhausted.
I was not prepared for how my wife looked when she walked in the door or how much the day had taken out of her. All color was gone from her face and she looked deathly pale. It was unnerving and upsetting, even though I have been with her through much of this illness and watched her steady decline. She dragged herself towards the couch and lay down. A few minutes later when I served dinner she barely touched her food and quickly returned to the couch.
What I heard from her mother, who went with her yesterday for the first treatment of this new chemo, was that the day was just as difficult. They asked her to come two hours before her scheduled appointment with no explanation. It turned out they needed to give her an anti nausea pill. She took the pill and then had to wait two hours for the chemo to start. This was no way to manage a person in significant pain. The chemo itself takes about three hours. Another exhausting and difficult days.
As I think about the weeks and months to come I am worried. Her continuing decline suggests that unless this new chemo works miracles, she is not long for this world. There is increasing fluid in her lungs from laying down all day. The cancer has grown rapidly and the CT scan last week showed the emergence of new tumors in her abdominal area and on her right lung. Most worrisome are the tumors that sit on her bowels and bladder. As these tumors invade her bowels she could have bouts of uncontrolled diarrhea. If she were to become incontinent, I am not sure we could manage her in the house without round the clock help. Even then I am not sure it will be possible.
The new chemo is 10% to 20% effective—not great odds. I suspect that we will know, even before the next CT scan if the cancer begins to shrink with the chemo or continues unabated. If she has increasing pain and becomes more disabled with side effects like incontinence from the cancer, we will know what it means. Conversely, if the pain levels subside and she begins to recover we will also know what it means.
In my own life I am not sure how I will be able to balance everything and keep it all together. I suspect my wife will take up an increasingly large part of my life for some period of time. It has been a very hard juggling act since September when she was first diagnosed with cancer and now it will only get harder.
Increasingly I see being able to give back to my wife and her family as a gift. At the center of what it means to be a human being is supporting someone’s journey through a terminal illness. While the experience is painful, none of it frightens me. I know what is to come and I have begun to plan for my wife’s eventual death and all the steps and actions that I will need to take. I need to be strong for my son, who will need lots of support, and for our families. It is not an easy road. In fact, is the hardest thing I have ever had to do.