Day by Day

Friday, September 16, 2011

We are over the hump. Anniversary and Birthday are new memories. I can’t shake that anticipation / expectation feeling that came with these dates as they approached. I know that “the holidays” are next.

I have decided to look at every day as gravy. The no-fat variety. I didn’t expect to wake up with Dave by my side on these September morns. And, here we are. So these days are each and every one “gravy.” Yum!

I am feeling more revitalized, more rested. Attitude can make a difference. Accomplishment helps me measure steps forward. I am doing much better by focusing on the now. Do what I can do. Rest when I need to rest. Let go of guilt. Resolve problems one at a time. Maybe there isn’t such a problem. I try to figure is there is a simple solution (including deciding some problems just aren’t), and concentrate on what is really important.

Listening is important. Dave needs an audience!

Last week Dave was complaining of the node in his right lung has enlarged to the point of pressing on his ribs. It is bearable but uncomfortable. I notice when he sits up he checks this area by rubbing his hand across his side, like testing a bruise to see if it still hurts. So our nurse offered to discuss with our doctor the use of Prednisone, a steroid that can help shrink the tumor. A side effect can be stimulated appetite, that’s a good thing, and better energy. Dave took Prednisone during the first round of chemo those many years ago for treatment of Hodgkins Disease.

The pills arrived on Monday, to begin taking on Tuesday. Dr. M prescribed a pretty big kick start dose for four days (through today) and then a maintenance dosage from there.

Of course when you start anything new you want to know: is it working, in what ways, and how quickly? He is to take them in the morning because it can interfere with sleeping.

Tuesday was his birthday. Dave received additional special attention with visits from family members even though there was the gathering on Saturday. Dinner smelled good he said. He was talkative, I noticed. He wasn’t sure if the Prednisone made any difference.

Wednesday was rather routine for us. Leah came by after work to watch TV and do laundry. Dave noticed that our dinner smelled good, too. (I have also decided I’d best get back to some healthy eating. I’m sure this has helped my change in disposition this week, as well.)

Then yesterday, he was wide awake before the crack of dawn. Me, too. It was very early! Now, mind you, my favorite time of the day is the first hour when I have my hot tea, sit and think, write or just stare out the window. This is Joan time. Usually I can walk away and he falls asleep, or I am awake before him. But he started talking. He had questions, thoughts, pondering. So an hour later I was able to begin my normal morning routine.  It occurred to me that Prednisone is changing his wakefulness. Hmm, will he wake up as soon as I do each morning?

I often spend  part of the afternoons with Dave, resting, sitting together, napping. Yesterday he started telling stories. In fact, I thought, his storytelling is getting a new set of legs this week. Should I be recording again? Maybe so. Stories were coming from new connections with old friends or responses to the barrage of television shows, one thread of an idea leading to another. I found myself sitting in the rocking chair listening, but my mind beginning to wander. Then it hit me. He is like the four year old who just jabbers away. You know, the kid that takes a long time to tell a story, and is so adorable and smart, but you really wonder if there is an end?  You want to ask a question but not sure if you want the entire answer.

So, I think the Prednisone is working. At least on Dave’s brain and his mouth! Like a young child, he has limited autonomy, so his imagination and thought and curiosity must expand his world. The only place for his new-found energy to be released is by talking. So, I will listen. And, with the same attention it takes to love and care for any four-year old (maybe forty or ninety four, too), I will be present to comfort and keep him safe whenever he needs me.

Then when he tires, I’ll go about my other duties, just as best I can. Our time together is limited. A four year old may grow older, but Dave will grow more distant from us until the talking stops altogether. Until then, I can relish the life that bursts forth.

I don’t need to record these stories (some of which are repeats) as these are stories of sharing in the moment. The topping on ice cream. The gravy on potatoes. The extra that makes something good on its own even better. These are days to be appreciated for just being more days.

For me to take in each moment as they come I am reminded of The Three Pearls from my friend Sophie Lumen, author of White Rose:

  • Show up.
  • Pay attention.
  • Love the best you can.

I think I get it.

2 replies
  1. Jason yette
    Jason yette says:

    The two of you are a great inspiration to us all. Your courage and strength are unsurpassed.
    I was in Dave’s class and Dave’s brilliant mind and stories are sorely missed. I will be at the fundraiser on Friday and hope to meet some of his family. Dave you are amazing as you continue to teach us all lessons and maybe the most valuable yet. My prayers are with you and your family.

    • joan
      joan says:

      Thank you, Jason. I look forward to meeting you Friday. I’ll, of course, share your comments with Dave.


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