‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if the thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise
October 29, 2014–The first thing he said to me this morning was, “I love you,” and haltingly, “My mind is OK.”
Was it? Maybe there was more going on in his mind than what I could see. Was it like a stroke? Was he trapped in this state, wanting to tell me he was fine, but not able to prove it?
Maybe seeing familiar places would be help him, so we drove by our former church. He just stared. Nothing clicked. He always enjoyed watching the ducks at Fairview Park. Nothing. The donut, he enjoyed! Filling out the handicap sticker application was a bust, but it kept him busy. For some reason he wanted to write his sister Elaine’s name, so I wrote it. That way he could copy it.
I had called Janae, our oncologist nurse, and told her that Roger had really declined. She returned my call and below is an email to the kids with my thoughts on her response.
I stumbled across several things on the web yesterday that have gotten me thinking. Janae, the oncologist nurse, didn’t seem too worried about this sudden turn for the worse in Roger’s mind. And then I read that it is common for “executive function” to get worse after treatment—because of the treatment.
I just wonder if it will get any better. Can you get your memory back? Can you get speech abilities and problem solving abilities back?
Where I am going with this? I am wondering if things will be even worse after more chemo. Or will it stay the same?
To be objective, I can live with him being like this. It’s not horrible when I think of what it could be. But if the treatment makes him any worse, what is the benefit? His quality of life is not good now, but it is tolerable. (Actually, if you think of it, there really isn’t a lot of quality to his days, but he is still a living soul, breathing and thankful to be alive.).
But if it gets worse, then what? Will he get worse just to stay worse? (Odd way of saying it, but I think you know what I mean.) And then what do we do?
I have debated about this next treatment. Con: What good does it do? PRO: It is the standard of care to prolong life. CON: Will it make him worse? PRO: Research says that this is the best route.
I guess I need to be patient to see what the next MRI shows, but I think we (Lance) (and everyone else) need to have an opinion about what we want for daddy. If things are ok, they will want to give him the pill bottles before we leave.
(To the reader: This is a little ahead of the story, but you need to know that the standard treatment involved 6 weeks of chemo and radiation and then an MRI. Those results would determine if more chemo would be given–five days a month.)
So, I guess I’m just getting thoughts down in black and white so I can see them and you can see what I am mulling over.
Lance was coming home for fall break, and I was doing a happy dance. He was going to spend a week with us, and it was just what I needed. Roger continued to need more care, and although it wasn’t unpleasant, it was difficult. I needed respite.
Re·spite noun \ˈres-pət also ri-ˈspīt, British usually ˈres-ˌpīt\: a short period of time when you are able to stop doing something that is difficult or unpleasant or when something difficult or unpleasant stops or is delays
I mulled over who I could get to stay with Roger while I was at the airport. Two dear friends agreed to help, and they came by one afternoon to get the “lay of the land.” Floyd and Phyllis Gruen: the angels; Glenda: the freed one.
It was exhilarating. What do you do when you can go out alone, shedding a constant responsibility? You go to Walmart, of course. I picked up some things, non-essential items I’m sure, and realized that this breather was vital to my mental health.
That evening I had a State of Grace rehearsal at our house. It was nice that Roger could hear us sing.
I awoke at 12:30 AM, and I regretted not emptying his pouch because at 4:00 AM he had an interesting blow-out with his ostomy bag.
I heard him get up and when I looked, there was poop all over the floor and on the toilet. He was standing there, holding his pouch. I think he tried to empty it, but he didn’t hit the toilet and it was a huge mess.
I jumped up and told him to stand still. While he held the pouch, I began to wipe up the poop. It had splattered a lot, and little by little I found frustration rearing its ugly head.
Roger couldn’t understand or take commands well, so trying to get him to move, or let go, or wash his hands was hard. He couldn’t move his right leg. Maybe it was because he afraid of being off balance. I don’t know. But I could barely get it ½ inch off of the floor. Finally, I got him stripped down, and washed.
The base attached to his skin was fine, so I just replaced the bag.
I mopped–I wiped–I put the clothes in the wash. Then I started counting my blessings out loud.
- A tiled bathroom floor for easy cleanup
- A large bathroom for ease in moving around
- Throw away Depends.
- A washing machine at my disposal
- A new toilet that flushes easily
- Knowledge of how to manage the ostomy bag
- No job that I had to get up for in the morning
- One more blessing I shall not ever forget: Even in late October as I typed this journal entry, Roger lifted his hand toward me. I reached for it. He pulled my hand towards his lips and kissed it. He couldn’t verbalize much, but in his heart he still appreciated me. I cried. I was thankful. I was blessed.
I had met a new friend on Facebook when we discovered her mother and my husband had the same brain cancer. Her mother had died, and the visitation was on the night I was to pick up Lance from the airport. Floyd and Phyllis came early to stay with Roger while I went to the visitation in a nearby town. I didn’t look forward to going through that line. Giving my condolences to someone I had never met was difficult enough. But I was also keenly aware that unless a major miracle happened, my turn would come to stand in her place.
I’m glad I went. We were strangers in that glioblastoma storm, but oddly bound together with cords of fear, wonder, comfort and trust.
Seeing Lance as he arrived made my heart so full. It was wonderful to see him. We talked continuously all the way home.
I wondered if Roger would recognize Lance. Phyllis had said she thought Roger was a little bit restless because he didn’t want to go to bed until Lance and I arrived. She said Roger made the bed, unmade it, made the bed, walked around, and finally sat on the bed. She asked him if he wanted to pray. Roger prayed and she said it was just like he was at church. He prayed for people. He prayed for Salem. He prayed for his family. I loved hearing that.
Before we went to bed for the night, Lance hugged Roger. I asked Roger if he knew who he was. Roger said, “He’s a gift.”