11 Comments

Losing My Marbles

I have short term memory loss and have been seeing a memory Neurologist for a year.  It started suddenly with the 4th dose of a chemo drug called Taxol, a drug that literally burned my nerves, then my memory problems took a rapid downhill turn after severe hypoxia from a long reconstructive surgery.  My Neurologist is also concerned that I don’t respond well to anesthesia, and my three surgeries may have damaged my brain.  For some reason, which the above doesn’t well define, my hippocampus and frontal lobe are deteriorating.  While I apparently have 11 different medical reasons for memory deterioration, none of them completely “fit the bill”.  So I am starting a patch that delivers a memory enhancing drug 24 hours a day to help alleviate the constant fuzziness and forgetfulness that I new experience on a daily basis.

But I am better then I was a year ago, and I attribute much of it to poetry.  Before my cancer diagnoses, I would dabble only if someone wanted a birthday rhyme, or a humorous short poem.  It never consumed my soul.  After my mastectomy, I wrote a bitter poem on the ordeal.  See Triumph Over Mutilation  And realized that poems are a unique way of expression unlike any other.  So I made a bucket list, and wrote about 40 poems during chemotherapy and put them in a book for my parents for Christmas.  I figured I was done.  But after the horrible reconstruction, I could hardly put a sentence together.  I had a complete blank on word recall.  It was like a black wall that I could not penetrate.  I couldn’t find anything that I put down, even a few moments prior.  I relied on my husband to find words and objects for me.  Thank God for 20 years of marriage!  He actually was able to find most of the words I couldn’t remember!

“Oh, Brent HELP!”

“Yeah….”

“I need that word!”

“Ok….”

“YOU know, the word for the thing in the kitchen.”

“Can you be any more specific?”

It’s the thing we make potato soup with.”

“You mean a blender?”

“YES! A blender, thank you!”

To my surprise, I found myself literally obsessed with writing poems.  I know it was my brain’s attempt to heal itself.  I wrote about 40 during my surgery leave.  Over time, the word recall, while still a problem, is much improved, and the word will slowly trickle into my head.  But I still have to ask my husband for many words.

Work is a problem.  I am a pediatric dialysis nurse and educator.  A tough, technically challenging job that requires extensive specialized knowledge and attention to detail, nerves of steel and the ability to care for neonates to age 21 on all forms of dialysis and apheresis.  I constantly find myself hunting for words, even simple ones that I have known for 20 years.  I don’t remember emails that I sent a short time prior.  We are a small unit and write all our own materials and procedures.  As a prolific writer, I am a project wizard.  Give me a writing project and I will churn it out.  I struggle now to keep track of them all, especially as I recently moved into an entire new area that has me scrambling for where everything is located now.  Not good for memory challenged persons.

That is why I like writing.  No one sees how I grab my hair and close my eyes for sometimes minutes at a time trying to remember that darn word I want.  And there is that flash of complete happiness when you have it, and you see your poem complete and it beautifully or liltingly  describes what was just a feeling or vague idea.

There is always a silver lining and I thank God for it.

picture: thewhirlingblog.com

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11 comments on “Losing My Marbles

  1. You hide any difficulty well on your blog. My brother had an accident last year and temporarily lost his ability to find words. He is a vet. On one memorable day he was examining a pregnant dog and he said ” Good boy”. Later he asked a woman how her dog was getting on, she looked at him as It was a cat! Thankfully it didn’t last too long, unlike your difficulty.

    • How frightening! Mine just hits me suddenly. But it is mostly nouns and names and terms and the like. Otherwise I can speak and write just fine in general conversations as long as I don’t have to recall specific names, proper nouns etc. Then it’s variable. Either it comes right to mind, or I have a hard black wall. Irritating while writing but horrible at work when I sit there like an idiot with my head in my hands!

  2. I had a conversation with someone with terrible short term memory loss the other day. It sounds like it must be terribly frustrating to deal with the problems with word finding and such.
    I am, however, glad that you have become more involved with your writing and such as a result. It sounds like it has been therapeutic on multiple accounts.

    • It has–except when I forget words that I have known and taught for 20 years! I forgot Adynamic bone disease and osteitis fibrosa yesterday during a talk! I kept saying, “Im sorry, Im having a brain freeze”, then used the generic “low and high turnover bone disease”. I figured you might be the only one who can understand the frustration of forgetting terms! For me, it is maddening to lose re-call!

  3. Oh! Oh! Oh! Would you pleeeeeze tell me the name of your memory-enhancing drug? I need it, I need it! After (lost count of) multiple head injuries, my memory has gone to sh*t. (you know this is Soul Survivor, right? I just happen to be logged into my other blog, Dina Leah.) Do you use sticky notes? If it weren’t for sticky notes I would not function at all.

    • OMG. See my sticky note post here: http://wp.me/p2HuGi-DN
      Donepzil is the pill, but I am trialing the patch Exelon, brand new. It is Donepzil in a continuous transdermal patch that lasts 24 hours. It is EXPENSIVE–so much so that I have been given a free 3 month trial. I will let you know when I taper up to the highest dose (month 3) if I notice a big difference or not.
      I JUST read a study with a high correlation between bipolar disorder and memory loss! So it may, like me, be multi-factorial!

    • Right. My shrink told me it was probably the BP. Plus I’m on so many meds, who knows, really? But I’ll be very interested to see how it goes for you.

  4. You hide the problem beautifully well when communicating with your friends on here. Of course we don’t see how often you have to ask Brent to help. Luckily, you don’t see how many of us struggle in a similar way with age related memory problems.I have my name written backwards on my forehead now so I know who I am when I pass a mirror.
    Lets hope the drugs improve things drastically for you.
    xxx Huge Hugs xxx

    • HAHA, I will have to try that! Yesterday I forgot the word “osteitis fibrosa”. For you, not a big deal, you cant even say it. For me, after 20 years of teaching about it, it’s a problem!

  5. […] have blogged before about “Losing my Marbles”, a traumatic brain injury and the Paleo diet.  Researchers discovered that a traumatic brain injury […]

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