It’s Monday, so that brings us another opportunity to explore the role of caregiving through Sally’s story.  Last week, she shared the story of her husband’s cancer diagnosis and treatment.  This week she shares what life was like post-treatment.

Normal Becomes a Beautiful Word – A Guest Post by Sally

My husband adored the loving and caring staff at MD Anderson. They called him by name every time we went and treated him with such care and dignity. On the last day of treatment he gave them each a gift certificate and thanked them.

After he rang the bell – a custom there when you get your final treatment – we left to go home. He could not wait to get back house where we had raised our children and to the town we had lived for 30 years.

So, we boarded a plane and went home to spend Christmas with our family.  For some reason, I do not remember that Christmas at all. I’ve tried to conjure up memories but, they just are not there. All I can remember is how badly I wanted a normal life back.

However, one of the tricks that cancer plays on people is that it is a cloud over you for the rest of your life. You live in fear that it will come back or that someone else you love will get it. Once it becomes part of your life it never goes away. With every cold, sniffle, or sneeze, I wanted to drag him back to the doctor.  But time passed and we did relax a little.  We tried to get back to a “normal” life.

Normal becomes a beautiful word.

Over the next few years there were signs that things were not right but no one had warned me that radiation could do as much damage as the cancer itself.  He had some dizzy spells here and there and I noticed some unusual behavior.  But, he was back at work and playing golf again.
One night we were on a family trip to Texas and we pulled out of a restaurant parking lot when I noticed he had turned the wrong direction.  Now, that may seem to be a little thing.  And if I had done it, it would have been no big deal. But he had always been a genius with directions.  That incident stayed with me as it was the first time I suspected things were not healing as they should.
Two years after his treatment ended, he developed trigeminal nerve pain in his face. We were celebrating the birth of our first grandchild and he was in so much pain he could not even smile.  (A funny aside – this is how he earned his “grandfather” name.  My youngest daughter kept referring to him as “Grumpa” instead of “Grandpa,” and the name stuck.)
Over the next few years he also developed Bell’s palsy.  Things were clearly beginning to unravel. He retired due to problems with dizziness and pain.
We began a series of MRIs that gave us no answers. The doctors kept telling us the problems were either due to necrosis from the radiation or a recurrence of the cancer, but they couldn’t tell which one it was.
MRIs. PET scans.  Tests, tests and more tests.
I wanted so badly to believe that things would be all right that I never questioned his bookkeeping, or bill paying, or any of the other functions he served around our household. In my mind, nothing had changed.
Little did I know he was not keeping up with the things he should have. His brain was not functioning the way it was supposed to be functioning.
In April of 2008 the doctors convinced us that he should have a brain biopsy.  We went back to Vanderbilt for the procedure.
Two weeks later he suffered a massive stroke.
* * * * * * *
If you are living with an illness, or are the caregiver for someone who is injured or ill, what does the word “normal” mean to you now?
To read earlier installments from The Caregiver Series, click the links below:

One Response to “The Caregiver Series : “Normal Becomes a Beautiful Word””

  1. on 17 Nov 2012 at 12:16 amKatie

    Thanks so much for sharing this story, I think it’s an important topic on so many levels.

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