Diary of a Cancer Ward 5/29/85: The Existential Rollercoaster

Wed. 5/29/85  

Pat’s Journal begins

We escaped to the hospital cafeteria to find some breathing space. Our pastor, Grant suggested that I start keeping a journal. He said, “If you do, you’ll never regret it.”

Well, we’ll see.

I just wish it had occurred to me sooner – too many things have happened in the last three months to be able to get it all down on paper. I can’t even begin to remember half of it. Too much “stuff!” Waaay too much.

We struggle daily with a baseline of medical crises, hospital stays, and terror. It is more than we can handle. Yet still, I can’t understand this roller coaster of hope and despair we live on, clamped tight inside the flimsy cars against our wills. One moment we are climbing. The way up is slow and labored, but the cars creak their way towards the top where the sunlight shimmers and dances. The next moment we catapult straight down into the darkness leaving our souls back at the top where the sunshine lives.

This morning I stood at the old white Norge with its chipped navy trim and tried to cook breakfast and cried, knowing we might lose her. That thought echoed through our Pullman kitchen and turned around to pound me as the coaster took yet another downward plunge into the dark tunnel that seems to have no end.

I feel so tired all of the time – well, maybe I have a good hour here or there that I’m not, but that’s rare. And I just can’t seem to stop the mindless eating, either. It’s hard, so hard to become motivated to do anything. The physical aspects of Heidi’s care drain away most of my energy.

Otherwise, I seem to spend a lot of time just sitting and talking with her. She cannot follow me around the house in her usual way, chattering like a little squirrel, nor is she able to go to school, or even play with her friends. She is such a social bug, and now both of those options have been cut off to her. That leaves only me, and I feel completely insufficient...and tired. So tired. Too tired to be any fun. Too tired to be social. So often, I simply feel drained of anything to say.

But an eerie and unwelcome quiet has pervaded much of this past week. At first, Heidi had so little reaction to the radiation that I fully expected her to breeze right through it. That has not held true and some unsettling changes have overtaken her. Perhaps we only need to hunker down and wait out the side effects until they dissipate back into nothingness.

Heidi became toxic to the Vincristin and cannot open her eyes even a slit, And for some reason, her eye tracking has gone wild. When we hold open her eyelids so she can see, her eyes cross and wander in every direction completely independently of each other. Before all this began, I didn’t know human eyes could act that way – they look more like eyes belonging to an iguana than to a little girl...sort of like right after her craniotomy all over again. But that time, her wild eyes were due to severe but expected brain trauma following such a major brain surgery. This time – there has to be a reason, of course, but we can’t think of anything that should be causing this.

Well, anything good, that is.

Then last Wednesday she started sleeping around the clock. We’ve had to push fluids – she just doesn’t want to wake up long enough to either eat or drink. I can’t believe how painfully thin she has become. The bones in her face have begun to jut out, pushing against the skin until it turns yellow at their sharp points, instead of pink. Her collarbone looks like it will break straight through if we merely brush against it. If the skin on her head and face weren’t so “sunburned” and darkened from the radiation, I suspect it would look almost completely transparent, but as it is, it appears to be some foreign color pasted over pasty blue-white. Sigh. Frighteningly like a incompetent mortician’s attempt to pretty up a cadaver with all its blood let.

We are not always doing too well with this. The first time Michael saw me try to force Heidi to wake up long enough to drink something he started to yell like I have never heard him yell before. “Would you just leave her be!” he bellowed. His face burned red-hot.

Suddenly, he raised his foot and stomped the ground towards me. “If she wants to eat; she’ll eat! If she wants to drink, she’ll drink! Stop pushing her all the time! Push, push, push! Leave her alone! Just let her sleep if she wants to, will you!”

“Look!” I wondered which countertop his brain had fallen off. “She’s not drinking anything! N-O-T-H-I-N-G. NADA! Not one drop. She has to drink! Without fluids, her kidneys will shut down and she will die! It’s not a matter of, ‘Well, gee Heidi, I think it would really be nicer if you drank more...’ I’m telling you – she’s not eating or drinking anything and it is only a matter of time before she dies!”

He stood in the doorway, frozen. Slowly red glare melted out of his eyes, leaving nothing but hollow brown. Then with eyes cast down, he drew away...

...and said not a word.

Well – he’s not with her all day so he just doesn’t know. She has been a little better the last couple of days, even coming out into the living room on her own. I’m afraid I’m just not very patient at times. Or very nice. It’s just that this fear keeps squeezing my stomach... and it is hard to step back and not freak out.

A few days ago, before her eyes shut down, Heidi said something that floored me. She sat in the tub while I tried to help her get washed up. We weren’t talking about anything in particular, at the time. Actually – I don’t think we were even talking. We were just sort of hanging out and not really focused on anything. The whiteness of the tile and the tub seemed to be the only thing in existence while the rest of life faded into a merciful blur.

Suddenly she looked straight up at me, and without blinking even once she stated, “Mom, I know that the Lord is going to make me better.”

Just like that. Right out of the blue.

I was too stunned to say a thing. The flat out way she said it was as if God Himself had hand delivered that message to her.

I only hope that He has. I only hope, He has...

Hope.

Some days it is so hard to hold onto hope.