Thursday, June 5, 2014

Wanted: Chemo Brain Rehab Programs - An Open Letter to Cancer Centers

As a science writer who went through cancer and post-treatment fog and then wrote a book about the “chemo brain” phenomenon, I can tell you there is enormous frustration in the cancer community over the lack of systems to help with quality of life. Long after hair grows back, long after nausea and neuropathy are things of the past, many still grapple with memory, concentration, and word retrieval problems, and the inability to multitask. In some cases, these deficits linger not for months, but for years.

I know this because people tell me.  
Their words are poignant and heartbreaking. They are thankful to be alive but struggle with day-to-day functioning and quick thinking. Jobs and livelihoods are at stake. There is discord at home because simple tasks go unfinished. Their families grow resentful. 

All hope I’ll have answers. But I don’t. No one really does. The best I can do is point them to the research and possible ways to cope culled from different disciplines.

I am aware of the scientific advances being made on our behalf and I am grateful. In 2007, when I first started reporting on chemo brain, many doctors considered the idea of cancer-related or cancer-treatment-related cognitive impairment a figment of the imagination, discounting patient reports of memory problems. Without medical support, patients literally thought they were going out of their minds.

Now that the literature is finally validating patient complaints, doctors are more sympathetic (although many still are concerned more with cure rates than quality of life). And while that may be comforting to some, what we need now is not the psycho-babble talk that patients should become accustomed to a “new normal” (an understandable but insulting term) but real concrete help to recapture our normal selves as we were pre-diagnosis.

That’s why we need intervention programs. Until the scientific story changes, until targeted therapies cure cancer while leaving our minds intact, cognitive rehabilitation can provide tools to help compensate for some of these deficits.

In the next few weeks I will be posting information about programs and workshops. Is there one at your cancer treatment center? If so, let me know and I will add it to the list.

Monday, June 2, 2014

How to Use This Blog

By
Idelle Davidson

Welcome. I hope you'll find the articles and stories here valuable. To begin, browse the LABELS index (right column, bottom of page) and check out reader favorites such as:

1) How Chemotherapy Changes the Way You Think
There you'll find my four-part series on how treatment affects your mind, including an introduction and a discussion of issues with executive functioning (planning ahead, multitasking, solving problems, etc.), information processing and word retrieval.

2) Research
You may be surprised to learn that scientists are finally beginning to connect the dots between chemotherapy and cognitive dysfunction.  Read about advances at the University of
Rochester, M.D. Anderson Cancer Center, Stanford, Indiana University and other institutions.


3) Ask the Experts
Doctors and others answer readers' questions about brain fog.

4) New York Times Consults Blog With Dr. Silverman
Dan Silverman responded to readers' questions in the New York Times about "chemo brain.'  Read a sampling of the questions and answers here or click on the link to the actual New York Times blog.

5) Is "Chemo Brain" A Disability Under the Americans With Disabilities Act?
Read my Q & A with attorney Joanna Morales of the Cancer Legal Resource Center and learn how you can protect yourself in the workplace.

6) Stories
For those of us who have traveled through cancer or are experiencing it now, how does sharing our stories help us find our way?  The answer lies in connection, in community.

My favorite story is from Lori. Find it in the LABELS index under "I Appreciate Your Book." The first line of her note to us is what made the two years it took to write our book all worth it.  She begins: "I would like to tell you how much I appreciate your book - I bought it yesterday, read it all night, with a highlighter, crying...."

If you read all the stories submitted to this blog, you'll come away with a pretty good idea of the toll "chemo brain" takes on cancer survivors and their families.  Michelle writes about trying to be loving and patient with her husband who went through chemo for Hodgkin's and is now chronically forgetful.  Susan M. tells us about her breast cancer diagnosis at age 38 and how she is still dealing with fog and depression.  Lois wonders if she has Alzheimer's.  Bruce Lantry was treated for leukemia.  He has found ways to cope with his loss of mental focus.

These stories are here to validate that each of us matters.

Also, make use of the SEARCH BOX at the top right of the page.  Put in keywords like lymphoma or breast cancer or memory or multitasking or driving, or word retrieval, or exercise, and see what articles and resources come up.

And finally, to really learn about "chemo brain," to understand what causes it and what you can do about it,  get a copy of our book: "Your Brain After Chemo: A Practical Guide to Lifting the Fog and Getting Back Your Focus" by Dan Silverman, MD, PhD and Idelle Davidson.  See the reviews on Amazon.

Sunday, June 1, 2014

The Poetry of Chemo Brain

I would like to congratulate Elise Partridge whose poem, “Chemo Side Effects: Memory,” was just posted on former U.S. Poet Laureate Robert Pinsky’s Poetry Forum website.

Monday, May 20, 2013

Memory Problems After Cancer? Computer Games May Help

If you've been through cancer treatment and you are struggling with memory, concentration, multitasking and/or word retrieval issues, you may be hoping for that golden portal, that doorway back to your pre-cancer self. 

Tuesday, May 14, 2013

7-Year Mesothelioma Cancer Survivor Tells Her Story (and It's Not About Chemo Brain)

I think I've done a pretty good job (if I do say so myself) of restricting my blog specifically to the topic of chemo brain. I'm making an exception though for Heather Von St. James who wants to increase awareness of mesothelioma, the malignant cancer that is linked to inhaling asbestos particles. Her video is lovely and inspiring. I hope you'll watch it. See her note, below.

Monday, April 22, 2013

Neuropsych Testing Can Confirm Chemo Brain, Say UCLA Researchers



Historically, a frustration among researchers has been that neuropsychological testing is not sensitive enough to confirm a patient’s complaints of memory issues after chemotherapy. Imagine then how patients feel. They may have already submitted to batteries of testing. And that testing may not have matched self-reports of memory loss, or struggles attending to the tasks of everyday life, or issues with word retrieval.

Wednesday, April 17, 2013

Chemo Brain: A Guide for Caregivers

Sara Barton wrote this beautiful piece for her blog, "The Practical Caregiver -- Cancer." She has graciously allowed me to re-post it here. Not only does Sara write about her experiences as a caregiver but she provides tips and guides for others. See her blog at http://www.practicalcaregiver.org. -- ID

By Sara M. Barton
Guest Blogger


Getting Past Chemo Brain
I'm a big believer that family caregivers can make a difference for cancer patients when we focus on overcoming the dreaded "chemo brain" by helping our loved ones in gentle, respectful ways.

Thursday, September 20, 2012

Navigating Through 'Chemo Brain'*


By
Idelle Davidson

Does any of this sound familiar? You’re halfway through what will be six rounds of chemotherapy when you notice a dense fog rolling over your brain. You grow forgetful. The responsibility of making even small decisions overwhelms you. You find multitasking impossible; good luck completing any task at all. Driving shatters your nerves; you’re disoriented, no longer sure which direction is home.

Sunday, August 12, 2012

Second-Hand Smoke and Memory Loss

In my July 5th column (Is Nicotine Good for Chemo Brain?), I wrote about the nicotine patch. Studies suggest the patch may help with memory loss.