Chemobrain--What is it?

Many people going through cancer treatments report that they are experiencing a change in the way they think. Some describe it as a generalized mental fog. For some people it is temporary and annoying, for others it is long-lasting and life- altering.

As the name suggests, people experience "chemobrain" as the result of chemotherapy, but a significant number of people report similar problems after receiving hormonal treatments, radiation, surgery or even just the diagnosis. Both men and women report this cognitive problem.

More questions than answers exist at this point, but the most significant advance to date is that "chemobrain" is being acknowledged as a real condition.


"Chemobrain" is made up of a cluster of symptoms that can have a profound impact on your quality of life. For example cancer patients and survivors reported difficulties in a variety of cognitive areas:

• inability to multi-task
• decreased ability to remember facts and events
• being easily distracted
• failing to complete tasks, especially on dead-line
• becoming overwhelmed on a frequent basis

Often physicians, family members, and colleagues hearing these complaints attributed the causes to fatigue, stress, anxiety, pain and/or depression. While all of these factors may be a part of "chemobrain" it is likely that there is much more involved. There is evidence that drugs, genetics, inflammatory responses, autoimmune responses may all contribute to altering the brain chemistry.

Today there is a growing body of serious research into neurocognitive late effects.
One of the leaders in this area is Dr. Christina Meyers, a neuropsychologist at M.D. Anderson Cancer Center in Houston, Texas. Her recently published book, Cognition and Cancer, provides information and data to oncologists, as well as other medical personnel, who may not be convinced that "chemobrain" exists.

Dr. Meyers says that while there is a huge amount of information about the effects that cancer treatment has on the brain, much of it has not filtered down to the practitioners. In fact, many health care professionals believe that "chemobrain" is a psychiatric issue.

Some of the barriers to accepting or even seeking this information could be that oncologists, in particular, are focused on putting their patients into remission. That's their goal. And that is exactly what their patient wants too. But as new techniques for managing cancer are employed, other issues arise--and many of them have to do with quality of life. Oncologists may not have the time or the training to deal with quality of life and/or societal issues. They may view many of the side-effects as necessary evils--things to be endured as part of the cancer treatment.

It is helpful to remember that pain management issues were once viewed that way too. Now there is an entire science around controlling pain. It took some time, but with patients, family members, and health care professionals advocating for better and safer control of pain, new ways of looking at the problem resulted in better outcomes.

I hope that will be the pathway for dealing with "chemobrain."

Next blog will talk about ways to make life more manageable with "chemobrain."

2 Interesting Websites for Cancer Care

I want to tell you about two websites that I really like. They aren't necessarily related to cancer care, but they provide lots of valuable information that you or your family members can use.

The first website is www.pragito.com

Pragito Dove is an author, mediation master and trainer. The website is interesting, especially if you already use mediation or want to know more about how to mediate. Dove uses laughter to release tension, both physical and emotional, to "...facilitate a quicker way to access inner peace, wisdom and creativity."

What I really liked about her website was the option to sign up for free weekly mediations.

So far I have received brief mediations on a variety of topics with the information divided into:
a description of the topic; guidance on when and where to practice/try out the mediation; and an overview of the benefits of the technique/mediation.

Here as some of the titles of the mediations--see if any of these interest you:

• Be a Witness, Not a Judge
• You Are Perfect--Being True to Yourself
  
• Prosperity--the State of Gratitude
  
• Courage--Understanding Our Fears
  

I find these mediations gentle reminders of useful concepts that can, with some deliberation, be a part of my life.

The second website that I subscripe to is www.realage.com

I subscribe to the RealAge Tips of the Week. I like the recipes, exercises, health and beauty tips, and medical information. There are even short videos demonstrating cooking techniques and exercises. Recently a video on doing stretching exercises while sitting in a chair caught my eye. It was very well done.

Check out these websites --they might interest you or someone in your family.

Cancer and Second Opinions

I've written about this topic before. I am strongly in favor of getting a second opinion--always. When you receive a cancer diagnosis or any other type of diagnosis that requires invasive medical interventions don't go with only one opinion. I am astonished at how many people will spend the time and effort to investigate grooming products or household appliances, but won't ask a second doctor to look at their scans, tests and lab work.

Recently I had an opportunity to re-examine this advise. Here's my second opinion--I was right, you should seek a second opinion.

An elderly relative was hospitalized for, what turned out to be a "hat trick" of serious conditions. His physician recommended surgery and stressed (more times than I thought was necessary) how high- risk the surgery would be. The physician didn't discuss other options.

When I mentioned that we would be getting a second option the physician got snippy with me. (Gotta love it when a grown man and a specialist, no less, gets snippy.) With condescension dripping from his voice he said that most people didn't find that they needed a second opinion so why did I?

I told him:

• We wanted to hear how another physician would handle these three medical issues
  
• We wanted to learn if there were options other than surgery (so we probably needed to talk to someone other than a surgeon)
  
• We wanted to understand what would happen if my uncle choose to do nothing
  
• We wanted to know if another hospital used an interdisciplinary approach to managing all of my uncle's health issues
• We wanted to have a medical team that was interested enough to ask my uncle to talk about his goals for treatment

I really liked those questions and felt good about bringing them up. And really, I wasn't challenging the guy to a duel, I just wanted another opinion. In fact I had been recruited to be at the hospital to provide just this type of help. So imagine my surprise when I looked around the room thinking that I would see happy relatives nodding their heads in approval and smiling at me and instead saw horror on their shocked faces. The atmosphere in the room got more intense when I heard them tell the doctor that NO--they didn't need a second opinion. They believed him to be the best and they would place themselves in this hands. As I replay it in my mind, I even see then taking a step away from me, crossing their arms over their chests and shaking their heads no, no, no!

My poor relatives were horrified by my chutzpa and looked like they pretty much wished that my parents had left me in a foster home when I was young. They were worried about offending their surgeon. They were so intimidated by the medical setting that they didn't ask questions. No one addressed what my uncle's life would be like if the surgery was not successful. They didn't think that they had the time or energy to go to another doctor to ask more questions. They just wanted to believe that this hospital was the best in the state and that their physician was the best in the world and that they would have the best possible outcome. Period. End of discussion.

Frankly, I was surprised by this physician's attitude. A year ago my husband needed surgery and after consulting with a very experienced and well-thought of surgeon we mentioned that we needed to talk to other surgeons too. He said yes, that was a very good idea. He went on to say that since we should move ahead quickly, if we had any trouble getting an appointment we should call his office to ask them to facilitate the process. Now that's what I'm talking about!

In trying to help I was just raising blood pressures. And yet, it was impossible for me to just let it go. So I waited...and made an appointment for a second opinion. I didn't know what I was waiting for, but I thought that reason and good common sense couldn't be kept at bay for too much longer.

The next week more problems developed that forced my uncle to make a quick appointment with his family doctor. That's where he received a second opinion-- of sorts. His Family Medicine doctor reviewed the hospital notes and voiced concerns. He outlined how risky the surgery would be and how long and involved the recovery would be. He said that even if the surgery went well the other two serious conditions that my uncle was living with would still be present. The surgery might not make his life any better. He encouraged my aunt and uncle to think about they wanted in terms of quality of life and to discuss that with other doctors. He said--get a second opinion.

My uncle is going to get a second opinion. Thank goodness.

Any physician, clinic or hospital that discourages getting a second opinion is suspect in my book.

There are no guarantees. Even after considering the information gained from a second or third opinion things may not turn out well for my uncle, but at least we did all that we could to understand what we were up against.

The dreaded word--EXERCISE!

When you are going through cancer treatments you many not feel like exercising. This is especially true if you didn't exercise before your diagnosis. But consider this--including some form of exercise in your life on a daily basis is a smart and healthy habit to develop.

Exercise will help with--everything. Here's a list of things that exercise can improve:

• digestion
• mobility
• balance
• healthy bowels
• appetite
• appearance
• social interaction
• energy levels
• mood
• weight
• mental-well being
• strength
• heart and lung functioning
• self-esteem
  

Try to exercise every day. It doesn't matter what you choose to do for exercise. In the words of Nike, "Just do it!" Be sure to check with your medical team, especially if you have just had surgery in order to determine when it is advisable to start exercising and what exercises to do.

And --here's a personal bias--the old saying "No pain no gain" is just plain crazy talk. Pay attention to pain--it's there for a reason. But don't let it stop you from being active. What hurts one day may not the next. Or you may find a way to walk, stretch or lift light weights that provides the same benefits, but doesn't hurt.

Walking, stretching, lifting light weights, using exercise bands can help your body heal faster and function better. You are going to look better too. Never underestimate the power of liking what you see in the mirror.

Enlist your friends and family in this quest for an active life style. Get out in the sunshine and walk. At first you may need to turn around and come home after only a short distance, but even a small walk is very good for you.

Do some stretches while sitting in a chair. Improve your muscle tone by using exercise bands.


Try something that you have never done before, like Tai Chi. Go to classes with a friend. That way if you have to miss a class now and then your friend can show you the new moves. Your friend can also do the driving. Make exercise a social event.

An added benefit to engaging in a new activities is that you will be committing yourself to the future. A very positive things to do. Attitude matters and committing to exercise can help your attitude.

When my mom was going through chemotherapy we counted getting up and getting dressed as exercise. Everyday, no matter how she felt, she put on make up and a nice outfit. Sometimes it exhausted her to the point that we wondered why we encouraged her to do it. But it made her feel better and it made her feel stronger, physically and mentally.

Having a cancer diagnosis changes everything--why not have it change your attitude on exercise?

Continue to exercise throughout your treatment and after and you are helping your health in a multitude of ways. Research suggests that exercising after cancer treatments are completed can lower the risk of recurrence.

Clearly exercise does great things for you.

Have a Plan

Have a plan for all your medical appointments.

Sounds simple and obvious, but it is so easy to forget. When you are stressed by a frightening diagnosis or you are facing anxiety producing tests and procedures you can easily forget to make a plan for how to get the most out of your time with your health care team.

There are several reasons why you should have a plan for every medical appointment.

• It helps you have more control over the content and outcome of the appointment.
• It defines and clarifies your issues and concerns so that your health care team can know which areas of your care are the most importance to you at that point.
• It provides a way for you to keep on top of symptoms and issues.
• It establishes the expectation with your health care team that you want to be involved in all aspects of your care.
  

A plan should include:

• Stating the purpose of the medial appointment--why you are there and what you hope to learn that day.
• Understanding the next steps--will you need to schedule follow-up visits, do you need to have lab work done, are there other tests or procedures that need to be considered.
  
• Documenting the information--how will you receive the information--phone call, report, scan, meeting.
• Identifying who to call on your health care team for specific questions, concerns and emergencies--and obtaining phone numbers and emails --be sure to ask about who to call on weekends and after hours.

Having a plan for each visit with your health care team is especially important if/when problems or complications arise. I have learned from experience that there is almost always something that can be tried. Working from carefully considered plans in the past will mean that you have a routine in place to help you problem-solve new issues.