Friday, June 4, 2010

From Gudrun Durmon: Every Pink Warrior Needs a "Chemo Sabe"

Hi Idelle,

Of course you don't know me , but I am a member of the very same club we did not want to belong to (I am OK with it now) and I did have a raging case of chemo-brain.
It was so bad that I knew if I did not get better I would not want to "survive."  I read your intro pages of your story in your book,  after the title completely grabbed my attention.  I have said more times than I can count that chemo fog must be how a person with Alzheimers feels....that you would use almost the exact words definitely hit home.

I think in my case it was the Adria/Cytox that just about did me in.  I had the most tremendous brain fog and could not trust myself to remember anything unless I wrote it down and that was the most helpful tool for me.

I have found out since my chemo that keeping your blood count high helps to "lessen" the effect of the chemo on the brain. We must ask our oncologists to do everything possible to keep our white and red blood counts in good order. After my 3rd  Adria/Cytox I had an absolute white count of 39 ; not 390, not 3900--just 39 measly little white cells and also significant anemia on top of it.

I could not make my brain work and I felt like I had lost myself ( I love that phrase too and I have said exactly the very same words).  At that point I  refused my 4th Adria/Cytox and offered to take 5 Taxol treatments to have a complete 8 rounds of some kind of poison to kill the f-ing cancer that was trying to kill me.

But the main reason I am writing to you is to tell you that each and everyone who has to have chemo should and must have a Ke-mo sah-bee (you know the story -- and we have altered the spelling: "Chemo-sah-bee") by their side.  Otherwise you are totally depriving someone close to you of the honor and the power it gives that person to be your Chemo-sah-bee; this way they can fight beside you and believe me it is a gift for that "friend." 

The husband of a close friend with breast cancer came up with that name 20 years ago and it became a tradition in our breast cancer support group at that time.  I work in the medical profession and I have encouraged the custom for those 20 years and when I had my second dance with the evil one,  my husband would not have allowed anyone else to be my Chemo-sah-bee.

With my first breast cancer I had a lumpectomy and radiation, but the second time I also had a very high HER2-neu marker and chemo became necessary. I have to say I was much luckier with my radiation experience -- twice I had the very best and it was a walk in the park.  Sorry you weren't so lucky with your intro to the "glow in the dark "special therapy.  During my first radiation therapy I got them to completely remodel the department in a very cheerful and beautiful way (I had the advantage of having worked with most of the staff).  I simply told them that while I was getting the worst "burn" of my life, I needed the place to at least look like a beach and they listened to me .

I do want to say that I don't feel like I have been through any more tough stuff than anyone else in "our club." We all have to do whatever it takes and might as well have a good attitude; it's a lot more fun that way.

One thing that helped me were audio books.  I have always loved storytelling and I love a good voice telling a good story and I could concentrate on short segments of a story and it was pure pleasure . So that might be a tip for patients on chemo.  It saved my sanity and allowed my brain to go to a wonderful place and take a break...

I can't wait to read the rest of the book - it hits on a very important and delicate subject and I appreciate it very much.

Gudrun Durmon, age 55
Lake City, Colorado (I like a Rocky Mountain high)

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