Faye, at
Summit Musings asks a simple, yet very interesting question (I think): What's on your mind lately?
My answer is simple: life and death...or more accurately, dying. It really is OK to stop reading right here, although I think the issue is important. Sorry. This is also going to be a very long post, and given my work schedule, I apologize in advance if I don't get around to all the Fun Mondays.
As on oncologist, I deal with dying all the time. The grief of death always seems to be heightened around the holidays. Time and time again, I see people that I expect to die, who manage to "hold on" until after the holidays. However, I also see those deaths that happen right on top of a holiday. There is the grief of the death, but also the added grief of knowing that from this year forward, Thanksgiving or Christmas will always be associated with loss for that family.
This holiday season has been particularly difficult for me. No, my father did not die, but his status has taken an acute change. The week before Christmas, my mother called me at work. "Celeste, you father seems not right. He seems confused." The described behavior was frightening. I was concerned that my father had
brain metastasis from his cancer. It was time: a disease with a median survival of 15 months in non-smokers had lasted 29 months. Over the next 24 hours, the MRI was done and was -- normal.
However, Dad's confusion worsened. Twenty four hours after the MRI he was emergently hospitalized with "altered mental status." AMS is a catch-all diagnosis which can represent a wide range of things from delerium because of infection to confusion from stroke or cancer. In the end, Dad was "medically tuned up" but the etiology of his confusion was unclear and continued at discharge.
I cleared my work schedule to travel to my parent's earlier than planned. Dad was released from the hospital, but was still quite confused, and also not sleeping (which I believe was aggravating the confusion). In the beginning, he was like a child, proudly announcing, "I'm bipolar and OCD," two diagnoses that had never been given him previously. With time, that went away, although the never-ending wakefulness persisted. The saddest thing: he seems to be aware of the confusion, occasionally saying "I am confused; I was lucid before" or "This is embarrassing." Each day, he had a new key phrase. One day it was "This is a Baton Rouge infinity process." The next, "This computer program isn't working." At times, he could interact, but I could tell he was forcing, trying very hard not to say the first thing that came to his mind as it would likely be quite bizarre.
Christmas Eve was the worst, but perhaps the best. I was feeding him, when he told me that he had died. I said nothing, hoping that this would not become his latest obsession, but it did. I listen when people tell me that they are dying or have died, because often times, they know. A while later, as I tried to get him to eat, he asked me "how do you all do this to people?" "What do you mean, Dad?" "The chemo. It's too rough. Why do you doctor's just make people suffer?" With that, I died a little inside. Dad, I know. The cancer journey is a crappy one, especially when it is a journey with no promise of cure, only the hope of prolongation. I wish we had better treatments. I wish we didn't have to poison the cancer, yet poison the person, too. Cancer sucks.
After that, his confusion worsened. He began to perseverate on "I am dead. I have gone to heaven" and repeatedly recited the Lord's Prayer. We finally gave him his night meds and put him to bed with my brother and I tearfully kissing my father good night. I honestly believed that might have been the last good night.
A little over an hour later, my father woke. He told us he was hungry and wanted to eat as he hadn't eaten in a long time. We got him food, and he talked to us without confusion for about an hour before he was tired and wanted to sleep again. That was our Christmas Gift.
Christmas morning came, and my father awoke, confused. We did the Christmas rituals. Although my father was there, he also wasn't. I watched my Mom care for her mate of 51 years. I could see that it doesn't matter how confused he is, this is her husband and she will stand by his side to the end. Their love is an incredible, enduring love.
Once, my brother told me that my father's greatest fear was the cancer going to his brain. This current delerium is worse. With brain metastases, there is the hope thatyet with more toxic therapy (whole brain radiation), the symptoms will improve, at least for time.
People have told me that they will pray for my father's healing. To be honest, I no longer know what the prayer should be (therefore, what is on my mind morning, noon, and night). If this current cruel process is the end of my father's journey, I believe that my family has already been given the gift -- the gift my father's life for 15 months longer than the median. Most of those months have been good, although many have been fraught with feeling badly.
With a new presidency looming, with a promise of change, I wonder how my world will change. Cancer care is expensive and at what cost versus benefit? My father is correct: often what we ask patients to endure in the name of cancer treatment is debilitating, and too often, the end result is the same. My father has certainly gained months in his treatment, but in his moment of confusion (vs. "lucidity"), I question if it was worth it. As I watch my mother care for my father, I know that for my mother, each additional moment with her life's mate is worth it. As I watch my father, lost in some delerium which may be his greatest nightmare, I wonder.
Today, my prayer can only be, "May your will be done, but please spare the suffering." I no longer know which outcome should be right.
I do believe that with death comes the ultimate healing. I do not understand our society's incredible fear of death and the natural loss that comes with death.
What's on my mind? Some really heavy thoughts. Do I have answers? No.
(By the way, for those who are wondering: all of my father's tests regarding neurologic disorders (imaging and spinal tap) came back pristine. My father has a neuropathy that I believe is a
paraneoplastic syndrome. Given the lack of abnormal findings on the current studies, I am concerned that he has developed a paraneoplasitc
limbic encephalitis, a process that is, for the most part (except in research centers), a diagnosis of exclusion).
