That's the title of a book that my thoughtful and caring sister bought me. I haven't spent much time with it yet, I guess I'm too busy processing my own feelings and memories and thoughts to let in those of someone else, no matter how wise. Perhaps this post will free up some space for that, perhaps not.
Yesterday I accompanied my Dad to a consultation with the surgical oncologist who performed his emergency surgery to remove a mass from his rectum which had perforated through his bowels. There was lots of infection, and as we found out later, the mass was cancer and that had metastasized freely in his liver as well. He had drainage ports put in because of the infection, and his digestive tract had to be diverted outside and an ostomy was installed. These were life saving measures, and still, in the ICU after surgery, he looked like death warmed over, mumbled incoherent thoughts, and gripped my hand like I was a life preserver. The doctors spoke to me in hushed tones, concern in their eyes, Dad was being watched carefully and they expected trouble from the infection in his gut. I drove to the hospital every day for weeks as he convalesced, packing bags to keep my 4 year old live wire quiet by the bedside, bringing coins for meters, finding all the best parking spots and learning the maze of HCMC. It felt good to hold Dad's hand, to be a reassuring presence, to pump his system with juiced carrots, and massage his feet with essential oil, an act of Biblical proportions, but to me just a way to show love and take care.
He got better! He recovered from a surgery they didn't think he might. He got well enough to be moved to the regular unit, and eventually to the care facility where he lives today. When he found out he had Stage IV, metastasized cancer, his thought was to fill up the month or so left ticking off a few bucket list items before his time was up. He reluctantly agreed to undergo the recommended chemotherapy, which was billed as palliative, meaning we could expect no cure for Dad from his colorectal cancer, but chemo could extend his life and keep the disease at bay. Many times I heard from his hematologist that chemo would continue, "as long as the disease responds and as long as he is able to tolerate it." And respond it did. After the first two rounds, Dad's tumor marker, a test run on blood, fell from the upper 20s to in the normal range of 1.6 or so. The mass did not regrow at the original site. After the second two, everything remained 'stable', meaning it shrunk a millimeter or less.
And at that point, Dad decided he no longer wishes to tolerate chemotherapy. Part of me understands... He spends his time on a small cot in a shared room at the care facility, does not wish to participate in the goings on or develop relationships there. But, he does not feel able to go out because of the bag. He worries it will leak and embarrass him. He finds the whole thing disgusting, embarrassing, and very, very limiting.
Which leads me back to the surgical consultation yesterday. The ray of hope. The surgeon had said initially that the possibility existed for Dad to be reconnected and function normally. He tempered that with the high statistical likelihood for the cancer to reoccur in the pelvic region, but the ray of hope remained in our hearts. 'Maybe Dad will beat it, his body is responding to chemo, maybe he can eventually have a normal life.'
No. I watched Dad accept the words of the doctors into his body physically, like there had been a touch accompanying them. No, it is not recommended to reconnect the colon, he had so much infection after the first surgery that the very real possibility is that he may never leave the hospital after the procedure. Besides which, there is about a 50% chance of a leak with the location and condition of his body there. The doctor found it a miracle that he survived the first surgery and feels Dad had used up his good fortune. He is welcome to consult with another surgeon for a second opinion. It is recommended that he continue with the chemotherapy.
Life can hurt. I remember this morning, the Dad of my youth, with golden hair, twinkling eyes, an irresistible smile, and lots of stories and corny jokes, ready to lend a hand and host. By contrast I see the Dad of today, thin, grey, silent, no twinkle and a smile that is a habit but with no heart in it. Why is it that color drains of a person nearing the end of life? Color = Life.
I wish I could bring color back to Dad. I wish he hadn't lost his ray of hope. It seems unlikely that he will make peace with his bag, and live with gusto until his time is up. This is my version of best case scenario, but I know that when you are terminally ill your priorities and perspective changes. Dad tells me this.
It is my time to be with dying, and it is a sad time.