progressively terminal illnesses

Friday


I am too tired to properly update on the holiday. In fact, I hadn’t any real plans to post live again until June, but a lot is going on and this usually drives me to write.

First, I have a pen name. It came to me after much thought and back/forth right before we left for the mountains. It combines a distinctly family name, which is also my dad’s middle name, with my maiden name. I will unveil it when I have my author’s website completed and up, but I am pleased with it.

The idea for a pen name for my fiction writing self has been stirring around for a while in my mind, but a speaker at the writing conference I attended finally provided me with a tangible reason to write under more than one name. Branding. When I am Ann or anniegirl, people who read are sure of what they are getting, but my fiction is dark, twisted and not particularly mainstream in a chick lit or even a straight high-brow lit kind of way. Therefore, my alias will brand my fiction. Readers will know what they are getting.

Second, we arrived home to yet another job offer for Rob. The same job he has been offered twice before – the long term project that would have taken us to Houston is now beckoning from England.

“How many times does opportunity have to knock?” Rob asked.

And I agreed. I read Paulo Coelho’s Brida and The Alchemist over holiday (along with three other books – I was tearing up the pages) and the second book deals almost entirely with following the signs the universe will show those who make their wants, needs or desires known to it. Coelho wrote an interesting fable about listening, trusting and having faith in one’s personal legend.

I don’t know that this job is Rob’s personal legend, but I have felt for a while that it is a sign and a step towards it. But more on it as it develops.

Finally, illness stalks the family once again. Rob’s younger brother was in the ICU as of Sunday night. He is chronically ill and had taken a turn. He will not live to be an old man and probably not a middle-aged one either (he is sixteen years younger than Rob) and though it isn’t a surprise, and Rob and he are estranged, it is unsettling. And it is a reminder.

On my side of the family, Nephew1 is quite ill. Deteriorating lung disease (or syndrome – it’s hard to know because my youngest sister was conveying the information and she is not bright). The doctors had been treating his breathing difficulties as asthma for a while but it turns out incorrectly.

“They told me I could die, Grandma,” is what he told my mother.

We may be making a trip to Iowa this summer after all.

About Three Weeks


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?”

“Yes.”

“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.

Stage 4


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.