Chapter 4–A Month of Downs, Ups and Downs

Head shot 3Chad’s company has two conferences each year, one in January and one in June. Since my retirement in 2010 I have been able to help them out by holding down their fort in Michigan while they were gone. It was natural for me to do it again this year. After all, what was in Illinois during the second week in January that couldn’t go on without me?

January 12, 2015

I had joined a glioblastoma member’s only group on Facebook. Funny. Who would ever beg to join that group? As I read entries I found that others were either at the beginning, middle or end of their journey. I’m not sure why I remained a member—I didn’t do it to wallow in my grief, or to think, “Those people are still grasping at straws, and NOTHING IS GOING TO WORK!” I do know that it helped me empathize with those families.

Well, an article popped up on my newsfeed giving a list of the great hospitals in the country—the ones who were experts on brain cancer. I didn’t see Barnes listed once. And then the old “could’ve, would’ve, should’ve” thinking cropped up as well as a few “what ifs.” Did we do all we could for Roger? Should we have gone someplace else? Should we have fought more for better treatment?” The answer? I thought we did. I hoped we did. We just tried to do the best we could with what we had.

I remember Jessica calling me to share how thankful she was to intercept a magazine that came in the mail. She rarely got the mail, but did on this occasion only to find a magazine that wouldn’t have been good for her little boys’ eyes—or even her husband’s. It was some sort of lingerie catalogue. That made me thankful for Jessica protecting her impressionable boys and devoted husband.

I share the above paragraph to give you insight into Roger’s character.

I told Jessica that Roger had the same mindset. He would not even look at the Hanes hosiery magazine when it came in the mail. He would set it all on the table with the catalogue turned upside down. Prudish? Backwoods? Stupid? No. It blessed me to have a man who wanted to guard his eyes and heart for only me.

Then Jessica told me what she was making for dinner. Roast. Potatoes. And cheesecake. After I hung up, I teared up. Roger loved cheesecake with cherries on it. I should have made it more for him.

Small things jolt me back in time, time when I had my husband and things were routine.

January 14, 2015

About dreams

I had another dream about Roger, and, like the others I had, he was acting like he did at the end—with very low cognitive function. When I remembered the dream, I thought, “I don’t need to write all of it. Dreams are dreams. People don’t want to know all of the details.” So I decided to just leave it at this: Several friends were in the dream. There were cars, trees, vacuums, broken glass, and Roger trying to clean it up. In his underwear. With a white washcloth over his face.

Up to this point I had yet to have a memory or dream of Roger before he was sick. When I thought of him, my mind still saw him in the bed, so disabled. I thought of the bedsores he had—our fault because we didn’t turn him. I visualized his hands shaking, wishing that I could just flash back to times when he was healthy.

About taxes

Two things are sure. Death and Taxes. Oops. I forgot to pay the quarterly income tax. Thank the Lord for online payments. It came with a small price, but not the wrath of the IRS.

January 16, 2015

About tears

As I prayed with the Chad’s kids on their way to school, I did pretty well. Until I got to the part where I was going to ask God to take care of Roger and give us mercy. That was our prayer for four months. It wasn’t necessary now. And I teared up.

It’s hard to analyze what made me cry. If I knew what would trigger it, I would avoid it. But, like they say, it blindsided me. Chad and Stephanie had returned from their trip, and on Sunday morning I watched Chad lead the songs. The pastor was looking through his Bible in preparation to preach, and he had his Bible open. Boom. I remembered Roger’s loose leaf Bible, one that was designed so that sermons could be written on blank pages and inserted next to the text. That made me think of other Roger’s other Bibles and how I was going to have to go through them. And I cried.

Sometimes I would feel like I was doing better. I talked to a friend who had lost her husband about three months before Roger died. Sherry said, “Things will hit you out of the blue.  It’s normal.” At least I was normal.

About perspective

  • My perspective began to change. I was going through old calendars where Roger had recorded the fun we had. And then I went through his wallet and found some old pictures and notes. The thought came to me: I can’t bring Roger back. He is not coming back. He is gone. I can wallow in sadness, or wish to bring him back….but it is all futile.
  • I would hear things about married couples….and it hurt. I wasn’t married anymore.
  • My reactions to words were interesting. Not situations. Just words. If I heard any sermons, radio broadcasts or any verbiage about marriage.—advice about good marriages—illustrations about married couples—my antenna would go up, and I would think, I’m not married anymore. How does this apply to me? It helped me understand how singles or widows must have felt when Roger and I talked about marriage to mixed groups. Did they think how does this apply to me?
  • I would see couples my age…and it hurt. I wasn’t married anymore.

About being alone

IMG_7428By the end of January, I had had my fill of being alone. I would go to Panera or Starbucks and work on the Brainstorms Blog; it was good because I was around people. But on the way home it would hit me. I felt so lonely. I hated the nights. I wished I wouldn’t get so sleepy so early because that made me wake up at 4:00 AM.

I didn’t like being alone. If I ever moved, I would do it so I wouldn’t be alone at night.

About functioning normally

Please don’t think I was in deep depression. I was able to function. I got up in the morning, showered, met people for coffee and lunch, get the mail, etc. While I was at Chad’s I sent out our Christmas letter to people. It felt odd, but good. That was a good day. If you want to read the letter, click here.

I paid two bills online. That was a first. Roger and I were such baby boomers that we kept our home phone, used checks and a check register, and paid our bills by snail mail! I thought that since I was in charge now, I could pretty much pay the bills any way I wanted. Yes, I had arrived into the 21st century—about 15 years late!

Even some “firsts” were surrounded with good memories.

  1. Walking into the choir room at church for the first time without Roger. Odd. He wasn’t directing. But the memories were good.
  2. I made Roger’s favorite Rice Krispy Candy at home for the first time without him. He loved when I made it for him. It made me feel good.

About encouragement

I have a friend who was going through a more violent storm than I could imagine. She was about to come out of hers and encouraged me greatly with a Facebook comment:

As I read your post it put things into perspective for me. This is your year of firsts and it’s my year of lasts…every birthday and holiday that passes will be our last one to celebrate without (him) home. Thank you for the constant example you are and have been to the testimony of God’s grace. You are a beacon of light to so many.

My reply:

Gina, I rejoice with you. I’m happy for you that you get your husband back. When Roger was so sick, got his new liver, and began his long road to recovery, I had a friend tell me, “At least you will get your husband back.” She didn’t say it because she lost her husband; he was still alive. I think she said it to put it in for perspective for me. And those two years were wonderful. We felt blessed with those extra years. So, you should count down the days. Look forward. I guess I am, too, though I don’t have a definite time when we will be reunited, I am looking forward!

January 30, 2015

I often wondered how I would react the first time I returned to St. Louis.  Now I knew.

I traveled to Scott’s to watch him coach a Basketball game, and I’m glad I was on I-44.  I-64 runs right past Barnes, and had I taken that route, I would have been up close and personal with that building.  Instead, it was about two miles away. As that giant edifice loomed in the distance, I could still see the very rooms that Roger stayed in beginning with his liver transplant and through the brain cancer biopsy and diagnosis.

So I cried.  And cried.  I told God that Roger wasn’t with me.  And I cried.

If you think that was difficult, imagine my emotions when I arrived at Scott’s and went into the lower level where Roger and I stayed all through his treatment.  I looked at the bed.  He wasn’t there.  I looked at the couch and TV, the one he watched so many old TV programs on.  He wasn’t there.  I looked in the bathroom; his shaving supplies were still there.  But he wasn’t there.

I watched Scott coach, and I watched Ava and Asher play Upwards basketball, tearing up frequently when I thought how much Grandpa would have enjoyed seeing them play.

OBSERVATION:  Felling alone is natural.

OBSERVATION:  Tears are not predictable.

HELPFUL HINT:  Death makes you sensitive to others who have what you don’t have.  Don’t let it make you bitter.

HELPFUL HINT:  You may question the decisions you made about your loved one.  Don’t stew about what can’t be changed.