Chapter 5 – Storms don’t stop for birthdays.

The National Weather Service predicts Christmas Eve precipitation from Missouri to Michigan, with rain turning into snow in some areas (2014).  Do you know what?  Storms don’t stop for Christmas…or birthdays.

August 6, 2014.  It was a birthday I’ll never forget.  I turned 65 on this day, and I joked many times about me crossing over to the “officially old” group.  I was a “card-carrying” member of Medicare, and in our plans, we were going to be having a great time in retirement, living off of all of the twenty-something’s paying our medical bills.

It was two years ago that we celebrated my birthday in St Louis–in a hospital setting.  Roger was in a rehabilitation center to gain his strength after his liver transplant.  (That’s a whole different blog that has yet to be written.) This birthday was made memorable by meeting with the neurosurgeon.

During our meeting with Dr. Dunn, he said that the pathology report confirmed what he thought from the brain biopsy.  Grade 4 Glioblastoma. Treatment, if we choose, is not ineffective but it is not curative.  That phrase. We would hear many times over and over. He didn’t come right out and say it, but the disease was terminal.  Roger will die from it. He did explain that “radiation and chemo have good success in treating the tumor, but, again, it is not curative.”

Dr. Dunn discussed how they used the MRI to guide the biopsy, but there was “stuff” they couldn’t see.  More might be hiding under the contrast color.  He checked Roger’s short term memory; Roger only remembered one word. The stitches came out, and then we laughed a lot about AFLAC. I had mentioned that since we had cancer care insurance with them, they would need some sort of official diagnosis. Dr. Dunn said, “I’m sorry for laughing, but all I can think of is that goofy duck on the commercial.” He was so helpful in having his assistant providing us with the official pathology report to expedite the filing of that first claim.  That was a blessing to us.

Then began the flurry of appointments.  Oncology was the next day; Radiology on Monday.

Roger woke early the next day, and as we laid in bed he kept saying over and over, “I’m dying.  I’m dying.  I’m dying.”  I pondered if things had finally sunk into his mind. He hugged me as we talked, and said over and over how much he loved me, and how good we had been for each other.  He said I felt so warm.  We cried.  It was such a tender and sweet time.  We quoted songs and scripture…..”God is our strength.” “A Mighty Fortress is Our God.” “How Firm a Foundation.”

I pause here for a regret:  I regret not discussing the “I’m dying” phrase.  I could have asked him why he thought that.  I could have probed a little more to see what he was thinking.  Instead, I said, “Oh, Roger.  We are all dying.  Some of us may go sooner than others.”  And I brushed off the statement.

It was also during this time that I found an interesting flaw in my character. Someone once said, “A crisis is not a course in how to live; it is the final exam.  It reveals your character.” Here is my flaw.  You may not see it as a flaw, only a human quality. But when I examine who I am, this is not what I want to be.  I saw retired couples in public having fun, traveling, etc., and I felt jealous of them. I saw friends on Facebook who were having fun in retirement, and I wasn’t. Whah, Whah.  I shook my head many times and thought, “I must not dwell on those feelings.  I am where I am because God wants me there.”

And, to be honest, I still have those feelings.  I am very aware of other couples.  That jealousy rears its ugly head often.

Our meeting with the oncologist didn’t really get off on the right foot.  English was not her first language, and she was extremely hard to understand.  Add to this her assumption that we would do radiation and chemo, and our collective opinion was, “Whoa.  Wait just a minute.  Let us digest, decide, and get back with you.”

She answered our questions and explained the standard course of treatment, but she still wouldn’t exactly say how much time Roger had if we did nothing.  “With chemo and radiation the average life span was 15 months.  Without it, maybe 9 months….” and looking directly at us, “….or less.” We left the meeting with the understanding that we would talk as a family and let the doctor know what we wanted to do.

That evening we had a conference call with all of the kids.  Lisa and I were at Scott and Jess’s house, so we sat around the table with Chad, Stephanie and Lance on speaker phone.  Roger spoke that night with such clarity that we were all amazed.  He comprehended the brain tumor and the options, which were:

  1. Do nothing
  2. Do radiation and chemo
  3. Do radiation only if his blood counts were low.
The three choices; Roger clearly chose #2 and dated it.

The three choices; Roger clearly chose #2 and dated it.

He chose the radiation and chemotherapy, understanding that it would give him more time. He said, “I want to fight this as long as I can.” He also understood that the treatment would make him tired and possibly sick. His mental acuity was underscored by what he wrote under choice two.  Can you see it in the picture?

The next morning I asked him if he remembered what we talked about yesterday, and he did.  He knew the options and remembered the one he had chosen.

I found myself weary and ever so thankful that our kids were available for support.  I didn’t realize how much more I would need them down the road.

Another funny:

  • We all needed this humorous interchange at this time. We were deciding what questions we needed to ask the radiation oncologist, and as we went over the list, we asked Roger if he had any questions. After a pause, he asked, “Will this affect my fertility?” Insert hilarious laughter. Then he asked, “Will I be able to wear white after Labor Day?” Unfortunately, because he was so much like Dory on Finding Nemo, he didn’t remember to ask the doctor.

And, to remember that we were not the only ones suffering, we were reminded of a dear friend who was struggling with the shingles.  Our pastor had encouraged us to send her a card; Lisa and I thought we could do something even better than that.  We made her a video, one that we hoped would cheer her up.  We learned that it not only cheered us, but also many others, too!

The Shingles Jingle

 

 

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This entry was posted in Birthday, Brain Biopsy, Brain Tumor, Character flaws, Chemotherapy, Diagnosis, Glioblastoma, Radiation, Shingles. Bookmark the permalink.

1 Response to Chapter 5 – Storms don’t stop for birthdays.

  1. Diane Wiley says:

    Although totally different, I felt that for my mo and myself after Daddy died. I would be jealous of other couples because my parents couldn’t be a couple any longer.

    Like

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