Chapter 4 – We thought we were prepared.

Chapter 4

If you wait until the storm is upon you, you may be exposed to wind, hail, rain, lightning and maybe even flying debris as you go to the cellar.  Source

The all-important brain biopsy happened the morning of July 28.  Scott and Lisa were there with me as they took him.  We waited.  And we waited.  It seemed that we waited awfully long, and when I checked, it appeared that my pager wasn’t working.  I missed the initial call about surgery beginning, but eventually received a call that he did well, and it was over.

Dr. Dunn took us in the consult room to discuss what he found.  I remember all of the other surgeries that Roger had prior to this one, and the surgeon had always reported to me in the waiting room. With all of the people sitting around me, I’ve often wondered how they addressed the HIPAA laws in such a public setting.  Maybe it’s because the news was always good.

This time, as the door to the room shut, I could sense the doctor would confirm what we were dreading.  I was glad that a foundation had been laid about the possibility of glioblastoma, otherwise the meeting in that little room would have been horribly frightening.

Dr. Dunn explained that the tissue was sent to the lab, and the initial finding confirmed that Roger had Grade 4 Glioblastoma multiforme.  He didn’t sugar coat things, but he didn’t paint a bleak picture either.  He said that a study done in 2005 showed that the average life expectancy for people with what Roger had was 14 months.  That was after six weeks of radiation and oral chemotherapy.  He encouraged us to think about the treatment, adding that if Roger was his dad, he would go for it.

I remember sitting in that room.  Scott and Lisa were there, supporting me and collecting information to share with their siblings.  My eyes watered, but I maintained composure the best I could, thanking Dr. Dunn for the kind care he had given us.  Later that evening we had a conference call with the kids so everyone could know what the surgeon had said.

That night they put Roger in ICU after waiting for a spot to open up.  At 11:00 pm my phone rang.  It was the nurses station.  Being jolted out a sound sleep to hear, “Is this Mrs. Weldy?  This is Barnes ICU calling about  your husband,” brings panic.  I was so relieved to know that Roger just wanted to hear my voice.  He must have been so afraid, all alone and not really comprehending what was happening.

I needed to get back to Decatur to return the rental car, get our car from the repair shop and pay some bills, so the next morning Lisa went to the hospital and found Roger in ICU. After my errands, I returned to Barnes.  Roger seemed so confused.  The staff didn’t quite know how to empty his colostomy bag and had used three bags in the process, which was frustrating to me.  I had only brought three spare bags.

Eventually, Roger got into a regular room….a “step down” room–intense, but not as much as ICU.  He was on an “alarm pad” so they could know if he was trying to leave the room.  That was so hard to see.  We cajoled him as he tried to get up and out of there!

Some funny stuff

While we were passing the time, Lisa and I sang.  We sang just about anything that had words and chords.  This video is one that gives me a chuckle.  Roger was already 65, and I was 64 at this time, so the song was pretty appropriate, in more ways than one!  I love to hear him get tickled at some parts.  Maybe you will, too.  Click on the title to see the video. When I Am 64

Eventually the discharge process began, and with it came more evaluations.  First OT came in.  It was pretty routine.  Except this.  He would now need 24/7 care.  Someone would have to be with him all the time.  I reflect on that now and realize the enormity of that statement.  I wasn’t tired yet, but I now had an inkling of the huge responsibility that would soon be mine.  PT evaluated him and pronounced him fine.

During the discharge process Lisa and I waited.  And waited.  And waited.  All of the waiting got us inspired to make a video titled Hospital Time Ain’t Real World Time.  Lisa sent it to Barnes, and they contacted us!  It seems that they were beginning an initiative about coordinating and speeding up the discharge process, and the liaison said the video would be used in training. Click on the title to see the video. Hospital Time Ain’t Real World Time

We finally got home, back home to what was familiar, what was normal, although we would never have another “normal” day.  The next Sunday we went to church, and it was so good to see everyone.  The pastor asked Roger to pray, and for a moment I thought, “This is going to be awkward.”  But I didn’t have to worry.  Roger prayed from his heart and it was beautiful.

Then we lost Roger.

Literally.

Lisa and I were talking to folks after the service and all of a sudden we couldn’t find Roger.  He had wandered off and was nowhere to be found.  Come to find out he was outside, walking where the buses park as they wait to pick up kids after church.  Yes, he did indeed need watching.

So began our time at home.  One thing we noticed was that Roger’s reality blended with what was on TV.  For example, after he saw the Andy Griffith program where they drew out of a hat so the unlucky guy would win the TV, Roger kept asking when the drawing was.  He asked how we would pick the numbers.

Roger could still take care of his personal needs (toileting, dressing and feeding), but his mobility was slow.  We walked to the cemetery, and it exhausted him. But there was always a blessing to balance out a challenge: Roger never had any pain.

We always enjoyed walking in the cemetery near our house.   I couldn't resist taking this picture.

We always enjoyed walking in the cemetery near our house. I couldn’t resist taking this picture.

Tonight I heard all five verses of Our Great Savior (J. Wilbur Chapman) at church. The fourth verse is fitting.

Jesus! What a guide and keeper!

While the tempest still is high,

Storms about me, night o’ertakes me,

He, my pilot, hears my cry.

Hallelujah!  What a Savior!

Hallelujah!  What a friend!

Saving, helping, keeping, loving,

He is with me to the end.

How thankful I am that we did not wait too late to prepare for this storm. At the beginning of this chapter, NOAA warned that if you wait until the storm is upon to you move and seek shelter, you could be hurt. Roger and I made sure that we were equipped and prepared for potential storms in our lives—physically and spiritually.

Roger always wanted the radio ready to go in the basement “just in case.” He checked to make sure that we had candles, matches, flashlights, and batteries charged and ready so that when a storm came, we would be prepared.

But most importantly he made sure that we were secure in our love, faith and trust in God. Many times he quoted, “Though He slay me, yet will I trust Him.”

  • We made sure that we kept no secrets from each other.
  • We kept “short accounts” of things that irritated us about each other.  At the end of each day there were no regrets about our attitudes.
  • We were not naïve.  We knew storms would come.  We had already weathered some.
  • We clung to the scriptures that gave us assurance.
    • Deuteronomy 31:6  Be strong and of a good courage, fear not, nor be afraid of them: for the Lord thy God, he it is that doth go with thee; he will not fail thee, nor forsake thee.
    • 2 Corinthians 12:9 And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.
  • And most of all, we loved God as we loved each other.
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This entry was posted in Barnes Jewish Hospital, Brain Biopsy, Brain Tumor, Diagnosis, Glioblastoma. Bookmark the permalink.

10 Responses to Chapter 4 – We thought we were prepared.

  1. Renee says:

    Amen and Amen! Those verses are a mainstay of my life as is Isaiah 41:10 & 13

    Like

  2. neislers says:

    Mrs. Glenda thank you for being so open and honest in your accounts leading up to the loss of Bro. Roger. You are an inspiration to me and I know to many others with the faith you show and trust you have with God. May God bless you richly until He comes again.

    Like

  3. janice gearhart says:

    Mrs Glenda I have always admired your smile and your postiveness .Even while reading your story we can feel the love the pain the humor the daily struggle what an inspiration!!! I’m so glad God brought you into my life .

    Like

  4. Diane Wiley says:

    Oh how I loved hearing him snicker when you were singing “When I’m 64”!

    Like

  5. gweldy says:

    Diane I can watch it over and over and still laugh.

    Like

  6. Jennifer Walters says:

    So, so precious. Thanks for sharing.
    Lots of love, jw

    Like

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