Above picture is our last Christmas



 Tom is cast in the movie UNITED 93 about the plane that crashed on 9/11 in Pennsylvania. The film is to be shot over a six week period in England at Pinewood Studios. He’s thrilled. But before an actor signs a contract, for insurance reasons, he must have a physical to make sure he’s healthy enough to complete his role. After his medical exam, Tom is told that he has markers for cancer. He can still play the role, but he should see a doctor when he gets home. He doesn’t tell me this till he’s finished with the film and been home for several months. Of course, when I hear this, I am devastated.

And I feel so bad for him. His wonderful trip to England where he got to visit so many museums about the British Army and British history which he loved so much must have been ruined because of the cloud of death hanging over him. Poor Tom. Nothing ever seems to work out for him. But he claims he enjoyed himself.

 He finally makes an appointment with a doctor who checks out his throat which is where the cancer might be and declares him okay. We start filming Youtube videos of Tom telling some of his funny stories, but his voice gets weaker and weaker.

We go to another doctor, who takes another biopsy. It’s cancer of the esophagus. I faint in the doctor’s office. Tom is strangely unmoved. This is the beginning of the end.

We connect up with doctors at Memorial Sloan-Kettering in Manhattan. At first, we are hopeful, because we are told hopeful things. They look at the cancer’s position, but sadly it is in a spot that is inoperable. Bad news.

Tom must stay in the hospital overnight for some procedure. A blizzard begins. I tell him I have to go home or I won’t be able to get home. They say the procedure won’t start till tomorrow, so go ahead.

I get home and get a frantic call from Tom. Where are you? They need you to be here or they can’t do the procedure. He sounds like a child. I feel terrible. But I can’t go back until the roads are clear.

Inoperative cancers get radiation therapy. A plan is set up. It is to take six weeks of radiation therapy twice a week. We go into the city, hours early every time to wait in line for parking at the hospital. Then we enter the radiation waiting room to sit with others who are receiving treatment or like me, worrying and sad. The melancholy atmosphere in that room is so thick with despair, you could cut it with a knife. Those who are with the sick people attempt to appear appropriately cheerful.  Tom goes into the treatment room and is positioned where so they can irradiate the cancer in his esophagus.

When the radiation treatment is complete, it turns out Tom has lost the use of one of his vocal cords, which has been damaged by the radiation. No one tells us that this is a probably an ultimately fatal disaster. And he will never speak again. He will never eat solid food again, because he can’t swallow safely. As a result, he must have an operation to insert a tracheotomy so he can breathe, and then another operation to insert a stomach tube to feed him. He will need oxygen and liquid food delivered, for the rest of his life, his now very short life. The tracheotomy will have to be suctioned out every four or five hours. That will be my job, day and night.

He's an actor. He will never speak aloud again. He will never eat food again. The man who delivers the canned liquid food comments that those on stomach tubes rarely last a year. Fortunately, Tom does not hear this. But the delivery man is not a doctor, and none of the doctors have said anything like that.

Once I have to rush Tom to a local hospital for something. One of the completely insensitive doctors there uses Tom to teach other doctors about esophageal cancer. As he stands by Tom’s bed, this doctor announces that people with this type of cancer don’t recover and never last more than two years.

Tom is terribly upset, of course. I reassure him saying that if that were so, our doctors would have told us. But of course, it is so, and our doctors are trying to be hopeful as we pursue all the treatments available in the desperate hope that something will preserve life in Tom.

 We go into the hospital again to see if the radiation has worked. It has. The cancer in his throat is gone, cleared away. We have some triumphant days, living in the delusion that he can have the trach removed and thus be able to at least eat.

 One warm afternoon in early spring, I remember sitting on a sunny bench outside a mall with Tom. He was wearing a bandana around his neck to cover the hole in his throat. He’d always been a restless person, and now he’s even more restless, so out we went. I wished I could do something more for him, wave a magic wand and restore his voice and his life. I sat beside him as he smiled happily, lost in some thoughts he couldn’t share. I stared at him, faked a smile, and wondered what my life would be like living with Tom in this condition. I would have to devote my life to caring for him. That would change everything for me. I knew I badly wanted him to live, but my future looked as if life was closing in around me. Tom seems completely unconscious of the huge iceberg our life has hit and which is sinking us. He smiles happily, writes a note that he wants to go into the mall to buy more scarves to cover his trach. It’s the drugs he’s on that render him so oblivious to, well, to everything.