Good Days and Bad Days

From James:

This week started out great because we finally got the portable wheelchair ramps: all five of them, eventually. This was huge. It was excruciating for everybody involved to take So Young from the bedroom, down the stairs, to the car (more stairs), and back again. Now that we have the ramps, the only remaining mountain for So Young to climb when coming and going is the stairs to the top level. It’s still unsafe for her to walk down them, although she does it with much help, and it is exhausting and unsafe for her to walk up them. That should be resolved in roughly mid-December, when we get the chair lift. The fact that we have ramps and are getting the chair lift is an act of grace and generosity from many people. If I was to write a Thanksgiving post (and I didn’t, shame on me), I would surely mention the ramps, the chair lift, and pill organizers, but the latter is another story entirely… Here is a picture (not so great, taken at night) of the ramps.

Wheelchair Ramps!

Like clockwork, So Young seems to be gaining some energy now that the chemo is wearing off and Mom and the hospice people are working hard to get her on a regular, more balanced daily schedule. She also started gaining energy last month just about the time the second cycle of chemo was scheduled to start. She slept less on average this week and went out more because of the ramps. It’s a mixed bag, however, because she would be more alert but would have another tumor side effect worse than normal each day. Also, she tends to “crash” in the extreme when she does too much. So for example, I took her out of the house on Wednesday, Thursday, and (reluctantly) Friday. I say “reluctantly” because I don’t want to overdo it. On Saturday, she slept 20 or so hours, and her ability to swallow was quite impaired during every meal that day.

The tumor side effect that was worse today when I took her out of the house was her cognitive ability. I have mentioned this to many people, but there is a consensus that I am making it up or exaggerating it, because most people see her when she is sharp and alert. Today she was slipping cognitively a lot, particularly in the area of remembering the names of things, a disorder that is called anomia. We went to Starbucks. She loves a drink called the Salted Caramel Mocha. Previously, she couldn’t remember the precise name and called it “Salted Crack.” Very funny. Today, we made an earnest effort to practice and remember it, but after several rehearsals in a row, the best she could do was “Salted Vanilla Marshmallow Nut.” I am not kidding. She consistently said that after I told her the real name, and she was making a serious and earnest attempt to get it right. Cute but alarming. Believe me or not. I compare it to when she was falling down way in the beginning. It was an innocuous symptom that only I cared about and several doctors were puzzled about. One call to Johns Hopkins and an MRI later: Regrowth.

So this brings me to the title of this post: “Good Days and Bad Days.” You may see her alert and brilliant on one day, sleeping an absurd number of hours and incoherent the next. That’s the way it is. As a person highly invested in this situation, I am trying (and maybe only really trying) to not make too much of any one daily victory or any one daily defeat. Otherwise, I will be yanked around like crazy and probably would go crazy. Also, I can’t put too much stock in bleak pessimism or high-flying optimism. Why? Because it would drive me crazy and rob me of any scrap of peace I get each day. Neither might come true. I don’t control either. Nobody on this earth does. Why pretend?

This brings me to the subject of hope. What is hope? I have been asking myself that a lot these days, because most often I hear it in only one context: That the body might live. That is hope. Hope is that my physical body will live more years. That’s it. Then what? That’s why I only want to put my stock in hope with a capital H: Hope that, although my body will die, still I will live. That’s our hope. That doesn’t mean we don’t pray for miracles. I do every day. But what it does mean is that, when we pray to God for a miracle, we pray with the complete and utter realization that WE ARE NOT IN CONTROL. If we were, if all of our suggestions and earnest pleas came true, well, we would be God. We would not be what we are: People. With mortal bodies. In which we can put no hope. But in the meantime we hope for a miracle, with the certain Hope that, with or without a miracle, a person with So Young’s faith will live on.

When you are in a situation like this, you have these uncomfortable, grownup discussions that you never wanted to have and can’t handle. Today, So Young said, “Do you have some pills for me when I crash?”

I said, “What do you mean, ‘crash?'”

She looked confused and said, “When I die. Do you have…” motioning with her finger, as if to conjure them up, “pills. Like a pill bottle or something.”

“Do you mean something for the pain, in case there is pain? Is that what you’re talking about?” I asked.

“Yeah.”

“Yes, they definitely will, So Young. I don’t have it now, but if there is pain, we’ll get it right away.”

“OK.”

“Why? Why are you talking about death, So Young? Are you worried about that?”

“I have a feeling death is close.”

“Why do you think that?”

“Because of my eyes getting bad and stuff,” motioning with her finger again.

I told her that she shouldn’t think about death. She shouldn’t worry about that. Our day and hour isn’t ours to know. We just have to take each day as it comes, trust God, and hope for the best.