It has been a week since I found out that my Uncle Steve has terminal cancer.
I’ve felt sick to my stomach. I’ve felt calm. I’ve felt trapped. I’ve felt hopeful.
I try to think about how I’ll feel without him in my life. I wonder what his life will be like until the end. I thank God for painkillers. I call him every day. I’ve planned a trip on November 13th when I’ve completed my work contracts and can drive across the state to see him.
I ask him how he feels every day. He says, “I’m hanging in there by a thread.” And I say, “I’m glad you’re still hanging.”
This week Hurricane Sandy, the Superstorm, hit the east coast where I live, flooding homes and businesses, killing people and knocking out electricity and transportation. I didn’t know the storm was coming until last Friday, the same day I learned that the doctors found cancer throughout my uncle’s lungs and bones.
The next day I was to begin my big Birthday Weekend with my boyfriend Walter and I didn’t want to cancel it. In addition, I had an appearance to make at the Cherry Lane Theatre on Monday, and a job interview on Wednesday with the director of the Sundance Theatre Lab. There was nothing I could personally do for my uncle, and I had to fulfill my work obligations, so I made sure he was stable in the hospital, said goodbye to my petsitter and left for New York City.
On Saturday, Walter and I hung out at a café, had dinner with an old friend at Smoke Joint, saw a show at Brooklyn Academy of Music, and went back to our hotel. We awoke to the notice that the subways, trains and buses were shutting down at 7pm. We decided to leave the city early, in the afternoon. But first we went to Vynl for a great brunch and visited the Metropolitan Museum of Art to see the Andy Warhol exhibit. We boarded the 3:34 train in plenty of time.
Throughout the weekend, I had continued to receive calls from doctors, nurses and social workers. “Your uncle has cancer in all his bones and in his lungs.” “Does he want to receive chemotherapy? It won’t prolong his life.” “Does your uncle want a Do Not Resuscitate Order? At his age, the treatment will certainly break his ribs and if he comes back, there is a strong chance that he will have brain damage. He doesn’t know what he wants, but you’re his Power of Attorney and we need to know in case he goes into cardiac arrest.”
Here for the second time within two months, I was responsible for a life and death decision. I thought about it, and then I said it: “No, do not resuscitate him. He’ll be in too much pain. And it will be against his general wishes for the end of his life.”
When I decided to put my dog Camilla to sleep, I went through the same thought process. “What would his or her quality of life be like either way? What would either decision gain or lose for my loved one? What would he or she want?”
I knew that my uncle would not want to linger on and on if he were kept alive artificially, and that’s what helped me give the DNR order. He would certainly need life support – at least oxygen – if his ribs were broken, and there were possible brain damage. He had already prepared a Living Will which indicated that he didn’t want to be kept alive artificially after there was no hope of recovering.
So quickly, we reached that point – the point of no recovery. Yet we have not yet reached the point of no hope. There is still a great deal to do to keep him comfortable and to help him to ease into this new stage of his life where he knows the end is in sight. And where we know the end is in sight.
I feel sad. I don’t know how he feels. Other Hamiltons don’t generally talk about their feelings. I’m the unusual, artistic, expressive one. Maybe I can help him to deal with the end of his life in a way that he can bear the wait. I don’t know how I would feel if I were in his position.
I try to enjoy my life, knowing that it’s the only one I have. I am caring for my loved ones the best I can.
We were warm and safe in New Haven as the storm hit.I made sure that my remaining dog Isabella was taken to a warm kennel when my power went out after the storm in Pennsylvania. And I am living it up with my boyfriend for my special birthday weekend. It has turned into an unexpected week together because the trains weren’t running to the city until Friday and I couldn’t get home even if I had wanted to go.
This catastrophic storm, the news of my uncle’s impending death and my 50th birthday all happened in one perfect storm of living humanity. As the transportation and utility systems broke down all up and down the eastern seaboard, day by day we were forced to cancel all our plans. We were left with quiet joy – and each other. I can’t help but think that Superstorm Sandy is a perfect mirror for my uncle’s broken down body – with an invasive, violent disease disturbing all his systems. Yet for him there is no repair team. No emergency plan. Only slow deterioration. I need to be there for him – to watch, to support, and to communicate.
It is a daunting responsibility. It will be a challenge to watch him slip away. I pray for as little pain for him as possible. I will hang on to as much of him as I can as time goes by. The future is a big question mark. But I’m good in a crisis. I don’t lose my head. I’ll learn to do the right thing. And I know that there will be peace on the other side of this storm.
I had a gift of an unexpected week with one loved one while I managed the care of another one from afar. I feel that each relationship is strengthening. I just hope that I am up to the tasks before me.
Anne Hamilton 2012