Chapter 6 – “Back of the clouds the sun is always shining.”

449_sun_rays_through_dark_clouds

Sometimes the sun shines through the clouds in a storm.  I learned to look for and cherish those rays.  (Photo Credit)

After the official diagnosis on August 6th, we returned home to some normalcy, whatever that was.  Roger’s appetite was good, but he still got mixed up with simple things.  For example, after he showered, he started drying off while the water was still running in the shower; he didn’t see anything wrong with it!

One day I took him to the mall and Walmart.  It was such a sweet time for us. On the way home we both just cried and cried.  He said he was so happy to have me as his wife and that we were so blessed.

He woke up early on Salem Baptist’s Anniversary Sunday, and when he came back to bed he said, “I’m so tired.  So tired.  So tired.  But I’m so thankful for you, Glenda.  God has been so good to us.  We certainly are all clay.”

At this point I found myself personally struggling with timing.  I am a planner, one who wants to know what is coming up so I can prepare.  This was the most difficult time of my life.  I had no clue when death would come, though I knew it would.  I had no way to plan for things, or how, or who to ask for help, because I didn’t know when I would need it. After reading so many things on the Internet, I concluded that there is no time line until you get to the end. This site brought truth and reality to me and was a great assistance:  Brain Hospice

I didn’t want to lack faith.  I didn’t want to think God couldn’t do a miracle.  He had done it before when Roger miraculously received a liver at the 11th hour.  But honestly, I had an inner sense that this was going to be the end on earth for Roger, and I didn’t feel ready.  I worried about the car titles (they were in his name.)  I worried about investments because some of them were in his name. I worried if we had the correct documents for the trust. How would I prove I had power of attorney?

Roger attended the anniversary service at church, and everyone was so happy to see him. He was loud and vocal with his amen’s, etc., but that was ok.  We got to hear his voice!

In our minds, we thought we could have treatment in Decatur.  This would be so much simpler, less traveling, and comfortable being home. So when we met with the radiation oncologist on August 11th, we were surprised that he convinced us to have the treatment done at Barnes.

I think about that day we made the decision to have radiation in St. Louis.

When Lisa, Roger and I were in the radiation doctors office and were given the option of having radiation treatments at Barnes or Decatur, we discussed the pros and cons as they affected us.

Pros:

  1. The doctors at Barnes knew Roger, and everyone involved with all of his medical issues would be in one spot.
  2. We would have a place to stay at Scott’s.

Cons:

  1. If we went to Decatur, we would have to start from scratch with testing, locating a doctor, etc.
  2. Fuel expenses and added mileage on the car would be huge traveling to St. Louis.

At Barnes it would be three weeks at a higher beam or six weeks for a regular beam.  The doctor wasn’t sure how the chemo would work since Roger was on anti-rejection meds for his liver.  We would start on August 25th. Monday through Friday.  We would stay at Scott’s.

The blessing of family:

After we left, I got to feeling bad about not even discussing it with Jessica. Here she was–very pregnant and not feeling too well, going to deliver her baby during that time, juggling home schooling with a new baby and having house guests–her in-laws!

So Lisa sent a text to Jess:

Jess, mama feels bad that she didn’t check with y’all first before agreeing to do the treatment here so she’s working I a pros/com list for you…..so far the pros are:  built in babysitter….someone to do your dishes…

Then Jess sent me a voice mail.  It was the sweetest thing that said:

Hey, here’s the “pros” list: We are family. That’s what we are here for. That’s why God put us in St. Louis, and you are more than welcome here any time you want. Here’s your “cons” list: There’s NOTHING. Ok? We are here. That’s why we are here. We love you, and we want to help you all that we can. You are more than welcome to come any time. Love you.

I wrote back to her saying,

Jess I just heard your voicemail. I cried.  You are so sweet.  Thank you thank you. If I call you now I’ll be crying.

What daughter-in-law would give up her house, schedule and privacy to her mother-in-law?  MINE!  This is a public thank you to Jessica.

The little blessings:

  • Roger had to have a CT scan before the treatments. God worked it out so he could have it that afternoon instead of having to come back the next day.
  • We had to have chemo education. Chad was planning on coming the next week, and the nurse said she hated for us to come all the way back then. She checked to see if it could be while we were still in St. Louis. And she made time for us.
  • I called our financial advisor and explained the situation with Roger. I asked advice on what to do with the accounts that we in Roger’s name only. He said he could send a form for him to sign give me the durable power of attorney. It needed to be notarized. The form came the next day in the mail, I explained it to Roger he signed it, we got it notarized and then put in the mail.
  • We took Lisa’s car in to be checked, and the brakes were replaced and we were able to pick it up the next day.

During this time of waiting for treatment to begin, Lisa brought reality to me, a reality that I was expecting, but was trying to deny.  We were talking about daddy and his mind, and I asked her, “Do you think his short term memory will improve.”  She said, “No.”  It was true, but so sad to hear it from someone who “wanted her old daddy back.”  Yes, it was true.  He would never be the same old daddy here on earth.

I also learned an important lesson.  I ran into someone whose relative had succumbed to a brain tumor.  The picture that was painted was horrible.  It was expensive, difficult, painful, and depressing.  I came home pretty discouraged, but God reminded me that people have different experiences, and I shouldn’t expect mine to be like theirs. I prayed that Roger’s end of life would be gentle, peaceful, and merciful so that we would glorify God though it all.

You probably think that the brain tumor was the top issue at this time.  That is true, but only partially.  Since Roger’s total colectomy in February of 2013, he had been managing the changing and emptying the ostomy bag on his own.  At the beginning it was a major undertaking–getting things ready, getting things cleaned and applying the appliance. Emptying it every two or three hours when it was full eventually became routine, and almost normal.  By the winter of 2013 Roger was self-sufficient.

In mid-August he had a huge blowout in the night.  By that I mean that he dripped poop in the bed, on the toilet, on the floor, and even into the kitchen (for some reason he frequently thought that the bathroom was the kitchen.) This was the biggest “accident” he had ever had.  I got up, got him in the shower, stripped the bed, helped him put the new appliance on, and then he laid on the couch. I laid on the front room floor for a few hours while the bed dried.

At that point I was frightened and feeling sorry for myself.  What if he was with someone else and it happened?  How would they know how to help him?  What about me?  It was so much extra work.  But then I thought, “I have no job I have to get up for; I have no kids; it’s OK.  This is was what I signed up for.  I’ll trust God that He will be merciful to us, and by that I mean take Roger soon and in His time.  God had never gotten things done too late for us.  I must trust Him.”

Roger continued to be very loving and tender.  He constantly told me how I helped him so much, and that I was the best thing that happened to him.  I remember telling him frequently, “You are not being an inconvenience to me.  I want to take care of you.  I want you to know that you are not a bother.  This is what I need to do.”  I’m glad I said those words; they must have stuck somewhere in his mind.

As we lay in bed, he said over and over, “I’m dying.”  And he seemed so very weary. Again, hindsight tells me that I should have agreed with him and asked him how he felt about it. The typical response is, “Oh, no you are not.  You are going to be just fine.”  I never said that; I knew it wasn’t true.  But, as I said before, I do regret not talking with him about his perception of things.

Our oncology education began on August 14th.  Lisa PuzzleWe arrived at the Siteman Cancer Center and waited for Roger to get initial blood work.  Lisa worked on a jigsaw puzzle—without the tape “measurer.”

Let me explain. While we were home, Lisa and I thought Roger might enjoy putting together some simple jigsaw puzzles. It was an idea. But not a great one. Lisa got out the puzzle, started it with the usual outside pieces, and the next thing she knew, Roger was getting a tape measure and measuring the outside dimensions to see if they agreed with what was on the box! The pictures are self-explanatory.

I surveyed the room waiting room at the cancer center; it was surreal that I was part of this mixed group. I saw humans in different stages of their storms–some in wheelchairs, some knitting, others reading or talking, several trying not to vomit, many pale and sickly. Caregivers were weary and worn, pensive, or perhaps afraid.  All were touched by this disease.

Up to this point we knew that we had to keep an eye on Roger, but he was able to get around, so we didn’t think there would be an issue with him going to get his blood work alone.

Much to our surprise, a nice lady came out of nowhere and said to me, “Mrs. Weldy? We have your husband.  He kind of got lost, but we found him.”  There he was, standing with a soda in one hand and a bag of pretzels in the other, grinning like a found lost child.  Lisa and I seriously considered putting a lanyard around his neck with a card that said, “If found, please return to…..” Had to love him.  Hated the disease, but loved him.

Lisa and I made another video about our journeys to Barnes.  Anyone who traveled a distance to get there for routine appointments would identify.

Traveling the Road

We returned home to Illinois for the weekend, and Lisa was going to bring Roger to the State of Grace concert, a Southern Gospel trio I sing in. But when I got ready to leave, he was tired, so he didn’t come.  It made me feel so sad that he didn’t have the energy he wanted to have.  And I really felt worried about what I would do when Lisa left.  Well, not actually worried; I just wondered how things would go.  It’s always been hard for me to ask people to do stuff for me, and I knew it would be hard for me to approach people with my needs.

An excerpt from my journal:

Time.  What is it?  Do we want more time?  Why do we do things to extend our lives?  To have just a few more months?  What purpose does it serve?  When Roger starts his treatment it will be just him and me.  We should be fine, but I wonder what impact it will have on him.

I think back on the decisions we made and look at how we were tempted to do anything and everything to help Roger.  My children helped me balance the treatment with the benefits. The time we had with him was so short, but any extra time we got could have been good or bad.  We really needed God to direct us.

 

 

This entry was posted in Barnes Jewish Hospital, Blessings, Brain Tumor, Family, Glioblastoma. Bookmark the permalink.

3 Responses to Chapter 6 – “Back of the clouds the sun is always shining.”

  1. I am so inspired by your writing. Your journey is an encouragement! It’s a joy to see you continuing to smile and praise God through it all!

    Like

  2. Diane Wiley says:

    I find it eerily comforting to see the struggles and humanness of the two people I consider to be the most perfect people I have ever known. Don’t get me wrong, I would give anything if you didn’t have to go through this, but it makes me feel like I’m okay with some of the things I struggle with. Once again, Glenda Weldy, you and Roger are still teaching me, just as you did in the days I was fourteen years old.

    Like

  3. Cindy whitcomb says:

    You are an inspiration!

    Like

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