Kirklin Clinic Head & Neck Cancer Support Group, Birmingham, AL
distributed by American Cancer Society
Pat Sanders, Editor
“Chemo Brain”, a type of Cognitive Dysfunction by Pat Sanders
There is no doubt that the disorder called “Chemo Brain” by many cancer patients exists but the reason why chemotherapy causes cognitive problems in so many patients is not so clear. Not everyone is affected but the numbers are high. The studies that compared 5 year survivors who had different types of treatment for breast cancer and lymphoma were conclusive. The original tests were done on breast cancer patients because there are so many of them that they can test people who are similar in every respect except for the cancer treatment. It has made for conclusive results that this cognitive dysfunction is related to the treatment, not the type of cancer.
The patients who had received chemotherapy did not do as well on cognitive testing; however, all the other problems such as anxiety, fatigue and depression were similar in all the subjects. The tests showed the cognitive problems for high-dose chemo patients were 3.5 times that of those receiving standard doses and even the standard doses produced problems compared to those who did not have any chemotherapy. These patients had no other conditions that could be responsible for these results.
At the website http://www.cancernetwork.com/journals/oncology/o0001c.htm, there is comprehensive reading from ONCOLOGY on neurocognitive dysfunction, written by Christina A. Meyers, PhD, ABPP of M.D.Anderson that indicates that Cognitive Dysfunction is underreported by patients and underdiagnosed by health care professionals.
Researchers are looking for ways to prevent or to aid recovery from this but right now the best advice is to adopt some coping strategies. If you feel you are not able to concentrate properly, are having to repeat a question, forgetting where you parked your car, or you can’t find the right descriptive word, problems we tend to blame on age, here are some suggestions.
Become a list-maker and write down everything, even where you park your car in a lot or parking deck. Visualize what you are doing so you will be more likely to remember it later. It’s like the times you have left home, gone an hour down the road before you started to wonder if you had turned off the stove. Think about where you put your keys and you might hang a special peg to put them on. Find ways to avoid having to puzzle over what you might not remember, like someone’s name. Hang a big calendar so the day and date is right there. You don’t have to remember everyone’s telephone number. Make a list of their numbers. Talk to your family and tell them that you may have a physical problem relating to having had chemo and it should not cause permanent damage but may take years to be over the full effects of it. They need to understand and help when you forget things you normally would know.
Even if you believe you have “Chemo Brain”, appreciate the life that might not be here without the chemotherapy. Enjoy the things that do not cause you a problem and, if you find yourself unable to concentrate as well as you could, slow down and take more time to read or re-read to understand instructions. Don’t be impatient with yourself and, above all, remember you are going to get better, not worse!
Grief Counseling Helped Me by Marona Posey
We knew from her first diagnosis that Mother would die. We knew that she couldn't beat it because the breast cancer had spread all over her body and she was already dying. We just didn’t know how long she had left. The chemo bought her four good years, years almost painless. These were years to resolve conflicts, years to do and say the things we all wanted to say to each other. We grown children had these years to express our love, to comfort her and to be there for her. She died peacefully and at peace with the world. We did our grieving before she died. It was a blessing when she died because, at the last, pain had crept into her and her body had shrunk to under 100 pounds. We were ready then to let her go. It was July.
In November of that same year, we found out that my sister, Camellia, was dying. Mother did not ever know that Camellia's breast cancer returned but she had had warned us that the cancer would be back and we would all deny it and say Camellia was different. She was cured. She was a young mother with an only child of 13 as the cancer returned after 4 1/2 years of a clean bill of health. We were all shocked when they told us it had returned in her lungs and the spot was as big as a grapefruit on her left lung. Less than a year after the cancer returned she died, but she had not handled it in the same way mother did. She refused to talk to us about her impending death. She never admitted that she knew she was dying. The signs were all there and she knew the chemo wasn't working but it was never discussed. Her 13 year old didn't know until the day Camellia died that she was that sick and I was the one that had to tell her at the hospital that her mother was dying right then, that day.
I never got to say the things I wanted to say to my sister. I never got to tell Camellia goodbye and that I would make sure her daughter had a good life -- that I, and our other sister would be there for her daughter. She died and I was there watching when she took her last breath. It was peaceful with the pain erased from her face. She didn't even have any wrinkles, her thin hair was not even gray.
The grief was overwhelming. I felt it should have been me because my children were grown and I was expendable. I felt guilty because I survived and she didn’t. The threat of oncoming death had hung over our family for years and the stress was unbearable. All I wanted to do was curl up and cry for days or for months while, in my own real world, my marriage was already falling apart and it just got worse. My husband, who never even went to the hospital with me to see Camellia, was disgusted with my grieving. He thought I was building a shrine in my house to my dead sister because I wanted the things she had given me to be around me. He would mock me when I cried and belittle whatever I tried to do. I could not handle the stress anymore and I wanted him to leave. I wanted to be alone with my grief. I wanted the comfort of talking to Camellia who would have understood everything; wanted to tell her what she had meant to me. Finally, someone at work suggested I get some help and the surprise was that my insurance would pay for four sessions with a licensed counselor. I didn’t realize how much I needed it.
I made myself go to a counselor that specialized in grief. He listened, he understood, he related. He allowed me to vent and then finally, on the third visit, he told me that the apparent reason she did her dying in that manner was because she wanted things to be as normal as possible for her child, right up until the end. Possibly she meant to tell her daughter when the time drew near that she was dying and the opportunity didn't arrive. For some reason she had made the choice to handle it like she was going to live all the way to the end of a normal life. She talked of the future, of what she would do when she retired and we were both little gray haired ladies, fat and happy with our grandchildren surrounding us.
The counselor made a suggestion. He told me to put everything out of my mind and to close my eyes and he gave me a couple of minutes to do that. Then he said, imagine that you are in a giant balloon somewhere in open space. You are alone in this balloon until you reach out and grab Camellia and bring her into the balloon with you. Then you have her there, right there with you, and you can talk to her. You can touch her. You can see her eyes. And he told me, “Tell her right now all the things you wanted to say to her”. He left the room and for 30 minutes I spent time with her in that balloon.
When he came back into the room, he told me I could do this whenever I wanted. I could do it anytime, night or day. She was only as far away as my imagination -- I could put her in that balloon and bring her to me anytime I wanted to. These visits helped me immensely. I began to deal with the loss. When I needed to talk to Camellia, I met her in the balloon. Now I could tell her all the things I meant to say and all of the goodbyes that were never spoken.
Mom and Camellia have been gone a long time now, Mom 13 years and Camellia 12. . Last year, Camellia’s daughter married and the whole family was there. I divorced years ago, healed, and moved on with a different life. As survivors, we need to realize that we have to put it behind us and live for the future for that is where our children and grandchildren are and we don't want to miss out on what we have with them. Building memories for them is more important than looking backward to what was. The past is gone -- say your goodbyes -- even if you have to pull your person into a balloon with you to do it.
INTERNET SITES TO HELP YOU COPE In looking for places on the Internet that might help with reading material, advice, and groups to correspond with, I found these sites
This is part of American Cancer Society and has wonderful explanations and advice on many parts of Coping with Grief and Loss. It is well indexed and easy to find what you want. If you register, there are others benefits including on line support groups.
Grief Loss and Recovery – This site is a small one where people gather to submit poetry or articles, enter a memorial, or join the email discussion support group.
An email list of ACOR. There are 226 people on this list at the moment and it is for helping to face the death of a loved one. (I belong to the larynx cancer list in the ACOR group. Sending a message is easy and you will get replies. .) As soon as you join, you can read the archives which can be a treasure for you and will acquaint you with the way the list is used and others who may have the same feelings you do. These are well run lists but not moderated.
Newsgroup Message Board. Just start reading and answer anyone you choose or start your own thread. You may have to register to write. There are messages of all types, supportive, angry, sad, but the outpouring and sharing look supportive for the most part. When you click on a message, there is, on the left side of the screen, a list of messages in that thread, so you can go to the first one and read through.
Check hospitals, your cancer center, clinics, churches and the American Cancer Society in your own area for these services and any local support groups.
In the Birmingham area:
Amelia Center 1513 4th Ave South Birmingham, AL. 35233, 205-251-3430
Free group sessions - No appointment necessary 2nd and 4th Monday each month 7PM
For private sessions. I called Muriel Thompson, a grief counselor, and asked her for some specifics of how this is done. She explained that she is usually paid by the insurance company, but if there is no insurance coverage, she charges per hour, which is negotiable if someone can't afford the regular rate.. She likes to start with just one appointment, so you are not committing to several in advance. I admire her, have heard her speak and worked on a committee with her at American Cancer Society.
Muriel Thompson Counseling Associates
2117 - 16th Avenue South Birmingham, AL 35205 205-542-1438
Grief: Helpful Hints Suggestions from Muriel Thompson
1. Grief can be a natural and healthy response not only to the death of a loved one but also to the multiple losses associated with diagnosis, treatment, and changes in our life roles.
2. Remember we each grieve in our own way and often on different timetables.
3. There is no right or wrong way or time to grieve.
4. It’s Grief not Craziness! Changes in memory, concentration, communication can be normal responses to intense grief. These symptoms are usually brief and do improve.
5. It’s important to take care of your own health needs if you are grieving ---keep regular doctor’s appointments even if you don’t feel like it!
6. Try to do some of the things you’ve always found pleasurable: a hot bubble bath, a short walk in the park or woods, coffee with friends, watching your favorite comedies.
7. Being short-tempered, irritable, or angry can be symptoms of grief. It’s important to identify the cause of the feelings or responses and choose to process them in healthy ways!
8. Try to let go of guilt when making changes in traditions or routines-----sometimes it’s a much healthier choice to make those changes temporarily.
9. A sense of humor can help you deal with some of the weird things well meaning friends and family members will say! Many tell me “I’m choosing to laugh rather than cry!”
10. Take care of YOURSELF. It’s a necessity, not selfishness!!!
Written in honor of a co-worker whose wife is dying of cancer by Susan Cain
You always wonder why? Why not somebody else, why not some rapist, killer or child molester? These are the sort of people that you think these things should happen to. Why take away someone who is caring, loving and the epitome of a perfect person in your eyes? Someone who could stay here and give the world so much more.
I want to ask you, as caregivers, how much more pain can you bear? Haven’t you endured enough already? The hurt is always going to be there but so will the other memories. Hold on to every memory of them you can, don’t let it go. It’s okay to cry and to miss them; they were a part of your life, therefore a part of you. Don’t cry for them though, cry for yourself.
Try to remember that you were blessed by having the opportunity to know them in so many different ways that many people didn’t. You were the lucky one that was chosen a long time ago, to have the honor of knowing them the way you did. You can make it, you can go on, you are stronger than you know. Try not to get mad at God. His plans were laid out a long time ago and He knows what He is doing. Maybe God lent us angels for awhile, but he needed them back..
(Susan Cain is the daughter and caregiver of laryngectomee, Joe Duchock)