stage four lung cancer

Four in the morning and it’s probably the most peaceful the house has been in days. I haven’t had much sleep in the last few days. Since Thursday it’s felt like time is standing still at a hurtling pace and though that makes no sense at all, it is what the last days and hours are like. Periods of total normal puncuated by long moments that seem as though one has lived them already. Deja vu stalks me because  of me – because of Will – and yet not. There are cystalline moments that belong just to this experience and just to Dad. 

I am the only one awake right now which is not surprising since I was the first one to go to bed last night. Driven by the noise of all things. Between the constant hiss and rattle of the oyzgen machine and the need to flee my younger brother’s anger, my sister’s grief and my mother’s helpless resignation.

There was not so much noise when Will died. I outlasted it until it was simply he and I.

Yesterday tried my patience with my youngest siblings. BabySis is too simple-minded to process what she sees and her mental defects are jarring in the harsh light Dad’s dying has thrown on them. She has been so annoying over the last twenty-five years that I was able to skip over the fact that she is borderline mentally disabled. Functional but vulnerable. And I want to be able to feel some for her but I just want to put distance between us. I am tired of her neediness and for once happy that LawnMower Man came back into her life because he seems genuinely concerned and protective of her. 

I haven’t seen LawnMower Man in over twenty years. Not since right before he knocked her up and then split for the West Coast. He is a tiny man. Skin so tight that he looks plastic. HIs clothes seemed painted on. He had Ken doll hair. Molded to his head and lips that seem stretched too tight.

“He looks like an old lesbian,” I told Rob who didn’t disagree and probably shouldn’t have laughed but his own siblings look like trailer park inhabitants too, so he knows exactly what I mean.

And then there is CB. He was drunk most of Friday to varying degrees. There is irony. He more than any of us suffered most from Dad’s drinking and hated its effects on the family unit, yet there he was at 3:30 in the morning, hammered, sitting watch. 

“He is very vulnerable,” Mom kept telling us.

And he is but I don’t care right now. Perhaps I will again at some point this week, but last night I gave in to my body’s need to sleep to get away from the rage that radiates off him.

Whatever lie I have to tell him to get him back on a plane for Tahoe will be told. He isn’t staying here with my mom. 

DNOS is alternates between in charge and distraught. She wishes us gone as much as she wished us here. She doesn’t like having to share her dad with the rest of us in his final hours. 

At one point last evening, when Dad was caught in a cycle of coughing, trying to swim free of the mucous that is swamping his lungs, she ordered us all out of the room. 

“It’s been just the three of us all along and it should end with just the three of us,” she said through the tears.

I forced CB, BabySis and Nephew out of the room. I silenced their indignation with the force of my will – which is considerable – and allowed DNOS, Mom and Dad to be alone. I remember clearly my own mute frustration at the end of Will’s last weekend when all the family and friends, who’d basically forgotten about him and us, came scurrying to the hospice. Despite the fact that it had been just he, BabyD and I for nearly three years, they laid claims based on longevity that had nothing to do with love as I know it. So I cleared the room for my sister and kept it cleared the rest of the night.

He’s still alive. Gurgling and surprisingly warm. I laid my hand on his chest and felt the heart pumping too hard. Death rattling in his chest and throat. How many times did I listen to someone in their last hours as I walked the hallway to Will’s hospice room? Even BabyD could recognize the sound by the end of his long stay.

“That person is going to die tonight, right Mom?” she would say as we walked past and heard the wet breath.

I wish Dad would just die. I wished the same thing about Will at that time nearly three years ago now. There comes a time when it is past time.

I don’t know if the hospice nurse was pressed for this time frame or she told just mom, but I got a semi-frantic call from DNOS.

“Did you talk to Mom?”


“Then you know? And you are coming?”

“It was a couple of hours ago and she sounded awful. Dad didn’t sound too good either, but neither of them mentioned my coming now. Why?”

“The hospice nurse told them it will be about three weeks. Mom is wiring money to C.B. I think she should just buy him the ticket though.”

Let’s step back from this conversation for a moment to note that even though she is panicking in a mild way, she still remembers, and comments, on C.B.’s tendency to not use money sent to him for its intended purpose. And I won’t argue with her assumption. If anyone could eff up the opportunity to make amends with his dying father, it would be C.B.

I point out to her that it is much harder to buy an airline ticket for someone these days because mistakes are hard to fix. It will be better to just send money. I don’t remind her that C.B. will only bring more tension to a situation already fraught and if he doesn’t get home in time, it will make things easier for the rest of us.

“So are you telling me I need to come this weekend?”

“I don’t know. Mom said she was going to call you.”

And so the lines of communication begin their inevitable breakdown. Mom and DNOS are not on the same page.

“Well, Auntie and Cousin are visiting today. They are probably still in the middle of the visit. She’ll probably call me later. I’ll talk to her regardless of whether she calls me or I have to call her.”

I then went on to explain that any decision needs to wait until after Dad sees the doctor tomorrow. The doctor appointment on Wednesday revealed that fluid is indeed building up again and Dad mentioned to the nurse today he is feeling pressure on his chest. The likely scenario is that the doctor will suggest draining the build up or simply letting the cancer run its course. Whatever Dad decides. This will decide things for me too.

DNOS didn’t have much to say after that especially when I pointed out to her that I couldn’t come and hang out for weeks on end. I have a husband and child and even though they would survive without me, it is too long to be away given the stressful nature of everything. Rob, BabyD and I are still raw from our earlier losses. We worry too much about each other as it is. Throw distance in and the recipe is ripe for disaster.

This was not what DNOS expected to hear. She also did not expect me to ask her if she was really prepared for what is coming. It’s not easy to watch someone die. Dad’s death is not a hypothetical in the far future thing. It’s here.

Later I spoke with my mother, she had questioned the hospice intake nurse about the time frame. Wednesday Dad’s doctor took him off all his medications including the blood thinner which has essentially kept him from having any further strokes these last two and a half years. That has been running through her mind and today it occurred to her that this was done because Dad didn’t have much time left. Time that could be measured by weeks instead of months.

Mom was surprised though to hear about DNOS’s call to me. I was not surprised to learn that communication from now on was going to resemble a game of telephone.

The bottom line is that I don’t need to go right now.

But that time is coming much sooner than I had originally guessed and I guessed shorter than three months to begin with.

When cancer has metastasized to sites beyond its origin, they call it “stage 4”. In my dad’s case that means that the tumor in his lungs has either grown into the heart muscle or aorta or that the size of it and the effusion it has caused warrant the dire level.

In any case, he is 81 years old and already suffering from pulmonary disease and severe osteoporosis. He would not survive cancer treatment. They are discharging him from the hospital tonight.

When I talked to my mother, the lung specialist had just left, and the nurses were getting Dad ready for discharge. They don’t waste time. Mom sounded very matter of fact. I remember that tone. I used that tone a lot myself. I still use that tone when I talk about Will’s illness or death. I have cultivated it and it can be a very useful barrier.

I have tried to remember what it felt like that day, the one nearly five years ago now, when the doctors gathered in that tiny exam room just off the lobby of the neurology waiting area in Iowa City and told me that Will was going to die.

Only that is not what they tell you.

They give you the name of the disease. They tell you that it has no treatment. They tell you that things will progress. Sometimes they have a time-line. Mostly they try to exit the room as soon as they can.

The day they told me that my husband was going to die, my Dad was in the waiting area watching BabyD, who was truly a baby then – just fifteen months old. I was too angry to cry. Angry with the doctors for not knowing more about what was wrong so they could answer my questions. Angry with Will for hiding so many of the early symptoms of his illness from me. Angry that I was alone and too grown up to just throw us all in Dad’s car and go home with him.

And my Dad said nothing. He didn’t chastise me for my reaction that day. He didn’t judge me like so many people would in the care-giving and widow years to come. He just helped me get Will and BabyD to the next waiting room for more tests and then to the parking lot and our vehicles for the trip back to our house in Des Moines that would never be our home.

Aside from my Auntie, Dad probably was the most consistent supporter I had during that time.

I asked Mom how he was doing, but I could hear him joking with the nurses in the background. He is quite the flirt when he is in the hospital.

I wonder what it feels like to be told you are dying when you were dying already. It’s like double-secret probation in a way.

Later when I talked with Rob, I told him that I feel worse knowing he has cancer and is dying then I did knowing he was just dying of the pulmonary fibrosis. And it doesn’t make sense because we all knew he didn’t have much time left anyway.

The doctors say a year or less which is nonsense. Even Mom saw through that evasion. And the doctor balked at hospice. What is it with doctors and hospice? Why do they wait so long?

I called my Auntie. I left a message for CB. DNOS called me, and we talked a bit. Mom told me not to come yet, but I think she is still in shock. DNOS agreed and is going to use her professional connections to get the real scoop on Dad’s condition. It pays to have a social butterfly sister who used to work at the hospital lab.

I asked her how she was.

She said, “Fine.”

But she choked on it a bit and when I asked again, she told me she would call me later after she knew more.

DNOS would have made a pretty good NOS.