Tim,

I am a brain tumor survivor. I have to tell you that, even though you may
not know it, you are being a WONDERFUL partner to your wife just by reaching
out and asking the question you asked in your post.

I often wondered who had the more difficult position - me, being the patient,
or my husband having to deal with all my frustrations, fears and changes as I
went through them.

First off, I have to agree with Sue Agresta's note. This is a very difficult
time and I hope you will hang in there. I did find a site for you -
http://www.cancer.duke.edu/btc/ReadingRoom/Personality.asp
. Also, I copied the article into my email below.

Even in the poll we did at this website, personality changes were tied for
the third highest in incidence as a symptom both before and after brain tumor
treatment. First, keep in mind that if your wife's tumor was in the frontal
lobe(s) this would be classic. My tumor was. I would become confused,
agitated, tearful, angry, forgetful, frustrated. You name it. Your life, at
first, is like a walking nightmare. One article I found put it perfectly:
"It's like waking up on another planet." But, if you ask just about anybody
in this group about how they look back on the experience after time has
passed, you will find most of us agree that many positive things came out of
this. A new appreciation for how precious many things are - relationships,
nature, solitude, you name it. Many people found their relationships with
their spouses became much stronger as a result. Take a look at some of the
polls at the website and you'll see what I mean.

Even if your wife's tumor was/is not in the frontal lobe, many of the side
effects of the medications and treatments directly or indirectly can cause
personality changes. The steroids are one of the worst. The anticonvulsants
also can make you groggy, disoriented, fatigued -- and more.

I know this must be difficult for you and I don't want to minimize that in
any way. I just hope you can try a little longer to stand by her. Maybe
find a support group or just feel free to keep writing here and letting us
help you through this as much as we can.

Where do you live? Where was your wife's tumor? Do you have children? Vent
to us and let us help.

There are many tips in the article below.

Remember, it takes time for things to settle down. You'll need to
re-evaluate your expectations and realize that you will need to be patient.
Your wife is probably scared and as confused by her behavior as you are. Let
her vent to you. Don't feel you have to solve everything for her, just
listen. Let her tell you how she feels, what's going on inside her head.
What does she feel you can do to make this easier for both of you.

I really wish my husband (uh... ex-husband, I should say) had done that for
me. Most people were afraid to just let us talk about it. It's good
therapy. As for you, try to find a counselor or group that can help you
through it. Your wife may not be capable of providing you the support YOU
need.

Sorry this was so long.

Trisha
Here's the article - pretty interesting:

http://www.cancer.duke.edu/btc/ReadingRoom/Personality.asp

Personality Changes

Andy is forgetful. Marianne laughs at things that are not funny. John wanders
from his front yard and gets lost in the neighborhood he’s lived in for 20
years.

Patients with brain tumors can experience many changes in their usual ways of
thinking and behaving. There can be subtle changes — they may just seem
"different" somehow. There can also be dramatic changes — outbursts of anger,
extreme personality changes, inability to remember important events, or
bizarre speech patterns.

There is often more than one reason for the changes in behavior and thinking
that patients with brain tumors experience. Exploring the causes of the
changes and options for dealing with them is very important.

Did you know that the location, size and type of tumor, treatment methods and
different medications can all contribute to the way a patient might be able
to think, talk, act, and feel when they are being treated for a brain tumor?
Let’s briefly look at how and why this happens.

Location of tumor

Different areas of the brain are "control centers" for many important
functions. For example, most people have their speech center in the left side
of the brain. A brain tumor in this area can mean a person has difficulty
saying the correct words, even though he or she is fully capable of
understanding what is being said. If the tumor is in the frontal lobe (behind
the forehead), patients may feel "disconnected" and lose some of their normal
inhibitions. For example a person who previously was very polite may become
rude, have anti-social behavior, or even start cursing. If you don’t know
where your brain tumor is located, or how that area of the brain normally
functions, the next time you’re in clinic ask your doctor or nurse to explain
this.

Size and type of tumor

If a tumor grows very quickly, such as with glioblastomas, healthy brain
tissue can be more easily destroyed from pressure and swelling associated
with the tumor. Patients with these tumors are more at risk for personality
and behavioral changes. Slow-growing tumors, such as pilocytic astrocytomas,
may not cause as much impairment because their slow growth enables the brain
to compensate for the tumor.

Methods of treatment

Radiation therapy can produce acute (sudden) changes, usually as a result of
the brain swelling from the radiation, much like a sunburn. The patient might
experience headaches, irritability, and vomiting. Later, even weeks after
radiation therapy has been completed, patients might experience fatigue, loss
of energy, and sleepiness. These symptoms can contribute to a patient feeling
and acting differently. Steroids can often be used to offset these symptoms.

Chemotherapy seems to have less direct effect on personality, ability to
think, or ability to perform. However, the side effects of chemotherapy, such
as nausea and vomiting, hair loss, or lowered blood counts, can cause changes
in one’s energy level, ability to socialize, self-confidence and outlook on
life.

Many of the symptoms that patients treated with monoclonal antibodies
experience are related more to the side effects of the therapy than the
direct effect on the brain. Side effects are similar to chemotherapy with
fatigue and loss of appetite being common.

Different medications

Steroids, such as Dexamethasone (Decadron), can cause patients to feel
"wired" or edgy, become manic or restless, develop anxiety or become
depressed. If you experience these symptoms, please speak with your
healthcare provider about the possibility of decreasing the dose or of using
a hypnotic or anti-psychotic medication to help with the symptoms.

Anti-convulsants in doses too high or too low can cause unwanted side
effects. This is why your doctor periodically checks your blood level of
anti-convulsants. They also can react with some chemotherapies, such as
procarbazine and BCNU, and cause difficulty with gait, slurring of speech,
sleepiness, depression, confusion and visual problems, including double
vision. Less common, but also possible, are agitation, aggression, insomnia,
and psychosis.

Finally, the patient’s own normal response to coping with a life-threatening
illness can cause personality changes, such as excessive crying or laughing,
depression, or rage. Sharing feelings with family and friends, counseling,
support groups, and anti-depressant medications can all be helpful.

Finding solutions

Here are some strategies that can help you better understand and cope with
what you are experiencing.

Pay attention. Become a keen and accurate observer of symptoms such as
personality changes.

Record your observations on a daily basis. Note the time, the circumstances,
the duration of the behaviors. Is there anything that makes it better or
worse? Track the patterns of the behavior. Does the behavior occur around a
certain time of day or around the time a certain drug is given? Does it occur
in connection with fatigue or over stimulation?

Report your observations to the clinical team at The Brain Tumor Center.
Review of neurobehavioral changes is an important part of each regularly
scheduled clinic visit. Sudden or dramatic behavioral changes should be
reported immediately.

Recognize that the person with a brain tumor is not necessarily trying to be
difficult. Their behaviors may not be purposeful; instead, they may be
involuntary, like a reflex. Focus less on changing the behavior of the person
with the brain tumor and more on finding ways to cope. Know that fatigue,
minor illnesses, drug or alcohol use can make things worse.

Be patient. Remember, while most of the human body heals very quickly by
replacing cells that have been injured, the brain is designed not to grow new
replacement cells. Instead, the brain is designed to heal by re-routing
bruised or injured cells and forming new or different kinds of circuitry — a
process that can take about a year to complete.

Get help from a neuro-psychologist, a specialist who works with physicians to
understand the organic effects of brain tumors on mental abilities. A
neuropsychologist can conduct a series of tests to assess the patient’s
emotional state, thinking abilities, and behaviors. Based on the assessment,
the neuropsychologist can suggest therapies, medications, or strategies to
help the person and family members adapt to or compensate for certain losses.

Maintain a routine. Doing the same things, the same way, at the same time
each day helps lower anxiety and maintain balance.

Join a support group. Sharing experiences and ideas with others who have
truly "been there" can bring extraordinary healing for both patients and
families.