Chemo brain

[Karen Wheel]

Well, I swim most all days unless the waves are too big! But most times now (because it is summer) it is really calm and well, we have no sharks so its not scary! Plus the water is so transparent and clean and clear --- it is AMAZING! I truly do live in paradise. I know it - I am so lucky! Also, did I mention that because I have "permission to live here" from the government all my health care is 100% paid for!? I have spent in all my therapy less than 200 euros and that was just because I had to pay for my gync apt and my first mammogram (after I found the lump) I paid for (45 euros!) because I didn't realize because I don't "WORK" - I am entitled to free exams. So even the PET scan I did today was free! How cool is that!?

AND, thank you for saying that I am getting stimulation, however I feel really really stupid every day as I can't speak english great anymore (as it is degrading) and my Italian doesn't seem to be improving! UGH! Piano, piano (which means .... slowly, slowly) and all will work out --- I HOPE!

If you want to see some amazing photos of my life here (and my very cool first year organic garden!) and sea photos .... you can see me on Facebook at Karen Wheel. I'm the only one in Sardegna!

I am also trying to finish a book I started before cancer --- and now I am over 1/2 done. It is about the life I found here and the courage it took to change my life to move here --- leaving big corporate job and selling my house and pulling all my money out of the US --- for true love and a simple quiet life in Italy. After I got cancer it was so hard for me to think of how I keep writing the book on paradise and longevity and courage when I didn't know if I would live.... so when I got my head around beating cancer .... then the book started to really come along! Hoping to finish and get it sold by the end of the year --- HOPE! But my big organic garden, morning and evening swims are cutting into my writing progress! :-)

Thanks again! Karen

[Carol.hope]

Karen,
What I learned about chemo brain is related also to why many of us seem to have so little energy for a year or more (ten or more for some of us!). Because of all the chemo drugs, our cells aren't making enough mitochrondrial (the powerhouse of the cell) energy to keep the free radicals in check. Some people (especially those with the ApoE4 gene) have a harder time recovering the free-radical balance than others. This is not to say you won't, but I find it's helpful to know there's a good reason why I can't keep up with others. Better than feeling like a wimp, which I used to!

Relaxing and enjoying are good for healing! Exericse, too. You're on it!

If you want, you can email me at Carol@BeyondChemoBrain.com, and we will get you a book, in English, across the ocean!

Your compatriot in brain recovery,
Carol

[AlaskaAngel]

Hi Carol,

The effect on the mitochondria is interesting. It makes me wonder if those who would tend to stay NED might ironically be those who suffer the most from the slow recovery in one way or another and would have the ApoE4 gene.

Hi Karen,

If the info indicating that the Italian health care system has the best outcomes is right, it also sounds like they have enough sense to consider health care to be a high enough priority and important enough to cover everyone there for it....

Best to you,

A.A.

[Carol.hope]

A.A., it's probably the chemo brain, but I'm not following you (and I would like to!). Can you explain what you mean? Thanks. - Carol

[AlaskaAngel]

I don't know if cancer has ANY simple answers! But I wonder if those who are able to have their mitochondria stay in slo-mo -- even if it means they are also the ones who suffer the most in terms of chemo brain or other side effects of slow mitochondria, like having much more difficulty with weight loss -- also end up being the ones who don't have recurrence.

I just am idly wondering of those of us here who don't have recurrence also happen to have the ApoE4 gene.

Does that make more sense? If not, let me know.

A.A.

[imdavidson]

Karen,

Yes, I want to see your photos and hear more about your book. I will send you a friend request through Facebook. All the best. Idelle

[Carol.hope]

Wow, Karen, you sound like you really are on the road to complete recovery. In some ways, cancer gives us the opportunity to redo things in our lives we probably need to. You started that even before your diagnosis! It looks like your test results are good, too. Congratulations!

Recently it has occurred to me that I live in the wrong country for my situation. All my medical problems are results of medical treatments that were paid for by insurance. But it seems that everything I need to recover now is "experimental" (because chemo brain hasn't been officially recognized?) and not covered. Therefore I pay for the unpredicted side effects of my treatment with my life (inability to do much), my time (hassling with insurance companies) and my money (they don't pay). What kind of a system is this?! If I lived in any other civilized country, at least I wouldn't be dealing with all the phone calls and hassles, and I wouldn't have to come up with money I can't earn because my brain is fried. Sorry, every once in a while it gets to me!

If I could travel, I'd come visit you and help you in your garden! Just kidding. (And I can't travel - can't do airports, freeways, loud noises, crowds, etc. But I can sit at home and write, and watch birds and take photos, and read!)

I haven't managed to take on that big scary thing called Facebook yet, but when I do, I will look for photos of your beautiful life! Thanks for writing.

- Carol

[Carol.hope]

A.A. - Hmm. It's good to think about possible benefits, but I can't think of any reason that not being able to make enough energy would keep cancer away. Also, people with ApoE4 have a harder time recovering from brain damage and more likelihood of other neurological problems (it's sometimes called the Alzheimer's gene, but that doesn't mean we'll necessarily get AD. I'm glad to know I have it, because now I know I need to go all out on eating well, exercising, avoiding toxins, etc. and not taking any shortcuts!)

I'm thinking that if we could process those free radicals better, we would be healthier, not more cancer-prone. But who knows. Luckily there's lots of research going on these days. I love finding out new info, right here on this site!

- Carol

[AlaskaAngel]

Carol,

I was thinking based on the way chemotherapy supposedly works on fast-dividing cells, with cancer cells being fast-dividing so they require lots of energy -- that if our mitochondria are kept in slo-mo as long as possible, that would slow down the development of the cancer cells. But unfortunately it also might be causing the severe problems like chemo brain, as well as slowing down our metabolism and resulting in the problem of weight gain of fat, which then seems to contribute to inflammation and recurrence.

Those are the kinds of unpredicted results that can happen when an extreme therapy is given in hopes that it will work -- it can end up very having hidden ways of contributing to the very things it is intended to prevent.

A.A.

[lyce]

This has been such a helpful and informative thread. It validates for so many of us what we knew intuitively. Thank you.

[imdavidson]

Lyce, Karen, and everyone, I meant to mention that there was a very good interview about chemo brain on National Public Radio with my co-author Dr. Dan Silverman at UCLA. Dan and Robin Young of "Here and Now" speak for about 15 minutes and their conversation is well worth hearing. I'll be curious to know what you think. Click here to be taken to the interview.

All the best,
Idelle

[imdavidson]

Hi Everyone,

It's not my intention to distract from our community here but I did want anyone who is interested to know that I have two highly respected medical experts contributing to my blog on chemo brain. They're busy doctors but they do answer readers questions from time to time.

One is Robert Ferguson, Ph.D., a clinical health psychologist at Eastern Main Medical Center who has been involved in some of the breakthrough research in the field of cancer and cognition. He runs a cognitive rehabilitation program for people who have been through cancer.

The second expert is Dan Silverman, MD, PhD, a distinguished neuroscientist at UCLA who is the coauthor of our book, Your Brain After Chemo. As many of you may know already from my previous posts, Dan was involved in one of the pioneering imaging studies that connected the dots between chemotherapy and cognitive dysfunction.

Dr. Ferguson just recently posted an answer to a reader's question and you'll be able to view it (and ask your own question, if you would like) at www.YourBrainAfterChemo.blogspot.com.

Just thought this might be something worth mentioning.

All the best,
Idelle