Chemo-Brain: It’s Not All In Your Head

 For many oncology patients undergoing chemotherapy or brain radiation, subtle changes in mood, forgetfulness and concentration may be noticed at the end of treatment.  It is when patients are returning to their “normal” lives that they realize they may have a condition called cognitive dysfunction—commonly known as chemo brain.  These symptoms were often attributed to stress, fear or other underlying medical conditions such as anemia. Underlying medical conditions do in fact contribute to chemo brain but they are not responsible for it.  Recent extensive studies, however, have shown that these patients are prone to having short term memory loss, mood changes, difficulty concentrating, unable to multitask, and difficulty with language and math.

 

Unfortunately, there is not a single explanation as to what causes chemo brain.  Direct neurotoxic effects of chemo agents (or the metabolites), and hormonal changes induced by the treatment may all play a role. Dose and dose timing, age, genetic factors, and the specific chemo agents may also influence the extent, duration, and the type of side effects each person will experience. 

 

Keeping active, mentally and physically can help preserve memory and other mental functions. Mental activity increases the connections between brain cells and keeps the connections alive.  If brain cells aren’t used regularly their connections will weaken.  Some examples of brain-strengthening mental activities include reading, doing puzzles, playing a musical instrument, painting, cooking, writing journals, trying to write with your non-dominant hand, using two senses at the same time—like getting dressed with your eyes closed or smelling a flower while listening to music.  Regular physical activity can also protect the brain. Brain-protecting physical activities include walking, going up and down stairs, hiking, cycling, driving and gardening.  It may also be helpful to use a calendar or another organizational aid to keep track of appointments and other commitments. Stress places an enormous burden and compounds the symptoms.  Don’t allow setbacks to “rain on your parade”, reduce complexity in your life and indulge yourself every once in a while with agreeable things that give you pleasure.
   

There is hope; most people recover fully from the effects of chemotherapy.  It is important to remember that there is a recovery process that goes on with time; a lot happens over 6 months, more over 1 year, and some after 2 years. 

 

Geronima Cortese-Jimenez, MPH, RN

Sexuality, Intimacy and Cancer

Often in the healthcare setting, sexuality is overlooked as an important topic of discussion.  Sexuality does not just mean the act of sex; it refers to all the beautiful and wonderful traits that encompass and make up who you are– how one perceives him/her self as a man or woman, husband, wife, partner, lover, friend, employee, etc. Oftentimes, these areas are impacted when one receives a diagnosis of cancer. Many of the side effects of cancer treatment (such as pain, fatigue, nausea, skin irritation, headaches, and hormone changes) affect sexuality and intimacy.  Medications used to treat cancer related depression and anxiety can also have an impact on sexuality. The impact not only comes from the disease, treatments, and side effects but also from the emotional complexities that arise for the person living with cancer as well as their partners and families.  When an individual is not taking care of his/her physical, emotional and spiritual health, intimate and sexual relationships are often negatively impacted.

 

Maintaining intimate relationships, the connection between two people that involves trust, honesty and communication, is a critical part of our relatedness as humans. Intimate relationships are not necessarily sexual relationships; however, some might argue that a sexual relationship could not be a fully satisfying relationship without an intimate connection. Sensuality and sexuality are quality of life issues.

 

For the Couple:

• It is important to talk about your sexual expectations. Disagreements can occur simply as the result of misunderstandings or lack of communication leading to one or both partners feeling rejected or misunderstood.
• Take turns individually to discuss your sexual expectations – how often, time of day that you feel at your best, etc.
• Remember to maintain intimacy and recall the thoughts and feelings when you first fell in love:
  • Write love notes to remind your partner how much you love and appreciate him/her
  • Set the mood: light candles, play music, take turns offering each other a massage
  • Take your time: appreciate and enjoy each other and the gift of being able to be fully open and intimate with one another
  • Talk about your “love language” or what speaks/shows love to you so that your partner is clearly able to respond to your needs
• Sometimes, sex becomes difficult or is no longer an important part of a relationship. If sex is not an option, find other ways to be intimate – cuddle, kiss, touch, hold hands, massage, talk, play a game, watch a movie or go dancing.  Sometimes just being naked is the most intimate act we share with our partners.
• If one or both partners is experiencing sexual dysfunction or having difficulties with sexual desire or performance; consult your physician to rule out physiological problems and a sex therapist. The American Association for Sex Educators, Counselors and Therapists is a wonderful resource and you can locate a therapist by going to www. AASECT.org.

 

For the Adult Single Person:

 Maintaining intimate relationships is an important part of your overall well-being. That does not mean having a lot of friends, but rather having a few relationships that you can be open and honest with. 

• Remember sexuality and intimacy is not just about sex.  Think of the ways in which you could connect with your friends and family in a meaningful way.
• Take time to reconnect with yourself and find enjoyment in activities or interactions with loved ones
• Find a support group where you can talk with people who are struggling with some of the same ups and downs that you are
• Choose one friend who you will meet with once a week

 

Final Thoughts

We, as human beings, crave interaction. We have the natural desire to be touched, hugged, caressed and loved. Sexuality and intimacy are not life or death issues but are essential to quality of life.

 

Sage Bolte, ABD, MSW, LCSW, OSW-C
Life with Cancer Oncology Counselor

Cycle Six – Day 90

“You’re looking great!”
“You did really well.”

I was wasted.  My blood levels were scary low; I needed a walking stick and I couldn’t go up or down stairs without stopping to catch my breath.  I even had to rest between tying one shoe and the other.

Nevertheless, my NIH team was congratulating me on how well I had done. I began to understand why when a nurse told me I had been given the maximum dosage for the protocol and that almost no one my age has done that.  I didn’t think much about the matter until the Nurse Practitioner at my oncologist’s office remarked on how fast I bounced back from my treatment. 

I didn’t think I did anything special.  I started out trying to continue to do all that I had done before being diagnosed and treated for Mantle Cell Lymphoma.  It didn’t take long before I was faced with the reality that I just couldn’t do what I had always done.

Expectations
My expectations hit me in the face.  First, I realized I couldn’t protect my wife from my diagnosis.  I’m supposed to protect her.  Now I was betraying her by not keeping my unspoken promises. 

My expectations for the future were blown away. I couldn’t know how treatment was going to turn out out and how my life would unfold.  My destination was unknown.  Even after six cycles of chemotherapy, my destination is still unknown and my expectations are adjusting daily.

Out of the ashes of my expectations came the acceptance of what was, or what I was experiencing in each moment.  Knowing I couldn’t do anything about my physical and emotional state was liberating.  Being able to sit with what “was,” and not be able to do anything about it freed my mind. There were just no choices I could make because I couldn’t do anything. I would be wrapped in blankets, sitting in a chair in front of the fireplace, in an 85-degree room with earplugs and headphones just to isolate myself from the possibility of a utensil dropping onto the kitchen floor. Sharp sounds went through me like lightening bolts. These kinds of experiences can be talked about, but never really understood by anyone who hasn’t been there.

Not Doing
In the experience of complete exhaustion cane the opportunity to finally give up the notion of being in control and doing anything. I surrendered to allow space for healing.

I don’t expect anyone to really know what that’s like unless you have been through it. Describing six cycles of chemotherapy is like describing a night carrier landing on a pitching deck in a rainstorm. No one can get it, unless they’ve done it. Extreme experiences set us apart from each other.  They can make us feel profundly alone, without anyone really able to understand what we are going through. I found myself on a solitary journey surrounded by a “Verizon Network” of support people who loved me, and I was alone at the same time.

Attitude
I’ve talked about the evolution of my attitude as I went through the experiences of chemotherapy.  The transition I noticed most was my allowing space for healing by letting go of expectations. The surrender of expectations allowed me to just be in the moment-by-moment experiences without expending unnecessary energy. 

“You’re looking great!”
“You did really well.”

Maybe the surrender of expectations and living in the moment had something to do with this.

By James C. Bryant, LCSW

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For over 20 years, Life with Cancer®, has been a safe haven to patients, and family members who have been diagnosed with cancer.  It is our hope that this blog will serve even more people affected by cancer.  Here you will find tips for managing side-effects of treatment, suggestions on what to ask your healthcare team, stories of how others are coping with their diagnosis, and many more topics related to improving your life WITH cancer.  We welcome your comments and suggestions and look forward to hearing from you.