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79. I have
just learned that I have a brain tumor and I'm afraid. Is this common?
Yes. Most people who
are diagnosed with serious illness grapple with fear and anxiety. Some
patients fear physical disability, loss of income, loss of health insurance,
or loss of support from their family. Some patients fear surgery, radiation
therapy, or other treatment. Some patients fear that they will die. The
majority of people fear what they cannot control, and there are many aspects
of brain tumors that are unpredictable and uncontrollable.
Not all brain tumors
are life-threatening. Some can be cured surgically and some can be
controlled for long periods of time with radiation therapy or chemotherapy.
Learning about your condition may help you cope with your fear. If you fear
specific aspects of your treatment, tell your doctor so that you can receive
help in coping with your treatment.
M.L.'s comment:
If you aren't afraid,
then you aren't normal! I was feeling great; I was about to get promoted to
vice-president; my husband and I were talking about starting a family. I
didn't have any warning signs at all. Then, I woke up one morning and I
didn't feel well. The next thing I knew, I was told that I had a brain
tumor. Frankly, I didn't know what that really meant. My husband did a great
deal of research on the Internet to find out as much as he could about brain
tumors. I was scared, but there seemed to be this voice inside of me that
kept telling me that I would be OK. I had read at one time that "cancer was
NOT a death sentence" and I believed that.
Having faith in God
and believing I would be taken care of also helped ease my fears. Someone
told me once that faith was the most effective antidote for fear. That
proved to be true in my situation. Others have suggested that hope is the
most effective antidote for fear. I'm sure there are many different opinions
on what is considered effective for fighting the battle with cancer. I just
continued to believe that I would be OK and that I would make it through all
of this.
My husband, friends,
and family were all an incredible support system for me. Believe me, I was
depressed at times, too. There were times when I cried a lot. It was about 3
or 4 months after my surgery when I was well into my radiation treatments
that I seemed to be very emotional for a period of several weeks. When my
mother or my sister would call me to see how I was doing, I would just start
to cry. I think the reality of the situation had set in. My doctors told me
that the depression could have also been associated with my medication.
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80. Are
feelings of anger and depression normal reactions to the diagnosis of a
brain tumor? What other feelings should I expect to experience?
M.L.'s Comment:
Based on everything
that I have either felt myself, read elsewhere, or heard from others, it's
perfectly natural to have negative feelings about the diagnosis that you've
been given. You have to deal with the fact that your life has changed.
You'll probably experience other feelings such as denial and resentment.
During the initial stages, you'll probably become somewhat numb to it all.
Again, all of this is normal. I experienced all of these feelings; however,
at some point after the reality of the situation set in, I realized how
important it was for me to think about how I could take those negative
feelings and turn them into positive energy. For some reason, I kept
thinking that this happened to me for a reason. My husband kept thinking,
"Why M.L.?" and "What has she done in her life to deserve this?" Eventually,
a sense of acceptance set in that changed the way we lived our lives from
that moment on. Duane and I did talk openly about my diagnosis and how it
changed our lives. I needed him to tell me many of the details that took
place early on because I couldn't remember them. Duane was (and still is)
terrified that he was going to lose me within the first year of my
diagnosis. I felt like I had to be strong for him because he was so worried
that he would lose me. I think the thought of me not being the "same M.L."
scared him almost as much as the thought of losing me completely. We talked
about all of these feelings and we allowed ourselves to be unhappy while we
were having these discussions. We always tried to end such discussions on a
positive note. We'd say that we would fight this disease one day at a time
and deal with whatever was given to us.
This whole situation
actually brought Duane and I closer. We were very close before, but dealing
with news of this magnitude was something that neither of us had ever had to
do. We found that we clung to one another for support and strength. I also
found a great deal of comfort and strength in my religion. The church and my
pastor were there for me and prayed for me all the time. I can't even begin
to tell you how many people told me they were praying for me, and I believe
that a person that gets prayed for gets well more quickly.
Since my diagnosis, I
feel like my personal life changed for the better. I've heard others say the
same thing. I think it's because you're forced to take a good look at how
your life was before the diagnosis of a brain tumor. You're given a chance
to re-evaluate your life and make changes for the better. I started trying
to figure out what "message was being sent to me" and what I was supposed to
do with the message I received. I sometimes wonder if this all happened
because it was a way to get me to help other people with brain tumors. By
sharing my story of dealing with a malignant brain tumor, I could help
others be more positive about their situations. I've thought about this so
many times and every time I get a different answer. These days, I just try
to do the best I can to live a good life. I try to be a good influence on
others who may be dealing with some of the same issues that I experienced
with a brain tumor.
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81. What
dietary adjustments do I need to make during treatment? Should I take
vitamin or mineral supplements? Can diet protect against recurrence of a
brain tumor?
Dietary adjustments
may be necessary, but recommendations vary from patient to patient. For
example, patients who have nausea and vomiting may need to change their
eating habits. Fried, spicy, or sweet foods may be more upsetting to your
stomach when you feel nauseated. Cold foods tend to be better tolerated that
hot foods.
Some patients develop
mouth ulcers or yeast in the mouth or throat during treatment. The presence
of yeast (candidiasis) can affect taste, contributing to loss of appetite.
Report painful sores in the mouth and throat that limit eating and drinking
to your doctor. Specific medical treatment for the sores as well as
nutritional beverages such as Ensure or Prosure that can help keep you from
losing weight during treatment may be recommended.
Some "raw food" diets
which are high fiber but low protein are not recommended for cancer patients
who need more protein and iron to rebuild their blood counts. Although
regular consumption of fruits and vegetables is recommended, patients with
very low white blood cells counts may need to avoid raw or uncooked foods
because they may still have bacteria in them.
Supplemental vitamins
and minerals are not required in a well-balanced diet; however, many
patients suffer nausea, poor appetite, or fatigue, which can affect their
ability to cook and eat a balanced diet. Although multivitamins and iron
supplements do provide essential nutrients, patients under treatment must
also consume enough calories and protein. Your doctor may refer you to a
dietician if your nutritional needs are not being met and you are losing
weight.
Unfortunately, keeping
well-nourished and physically healthy does not guarantee you will avoid a
relapse. There are no known modifications of diet that will achieve or
prolong remission in brain tumor patients; however, keeping healthy will
allow better tolerance of subsequent treatment.
Back
to Top
82. Fatigue
is a big problem for me. I simply don't have the energy to do anything. What
can I do about this?
Fatigue is a
big problem for cancer patients. In fact, two-thirds of patients report
fatigue severe enough to limit their daily activities. Fatigue is not the
same as weakness (a loss of strength), but fatigues does involve a sense of
generalized weakness, impaired concentration, and tiring easily. Fatigue can
be associated with anemia (a low red blood cell count), neutropenia (a low
neutrophil count), pain, depression, anxiety, and loss of appetite.
Treatment of these factors can sometimes improve the sense of fatigue.
Fatigue can be
associated with cancer treatment such as radiation therapy and chemotherapy.
The latter can cause anemia and neutropenia. The feeling of fatigue may
lessen when the blood count returns to normal. In addition, correcting low
blood counts with growth factors such as Procrit (for anemia) and Neupogen
(for neutropenia) may allow chemotherapy to continue at the recommended
doses.
Cancer patients with
normal blood counts may still complain of fatigue. Table 9 lists other
causes of fatigue.
Table 9
Causes of Fatigue in Cancer Patients
|
Type of Fatigue |
Possible cause |
|
Cancer-related |
Post-operative/post-anesthesia
Presence of cancer
Radiation therapy
Chemotherapy |
|
Nutrition-related |
Hypoglycemia (low blood sugar)
Weight loss
Weight gain secondary to steroids |
|
Related to a mood disorder |
Depression
Anxiety |
|
Related to another illness |
Infection/fever
Heart disease
Lung disease
Thyroid disease
Chronic pain
|
|
Medication-related |
Anticonvulsants
Pain medication
Sedatives
Rapid steroid taper |
Make sure you discuss
with your doctor the feeling of fatigue. It is particularly important to
note accompanying symptoms such as shortness of breath, constipation,
nausea, and muscle weakness, which may have a separate, treatable cause.
Strategies for combating fatigue include:
-
Participating in
aerobic exercise and physical activity
-
Keeping a normal
sleep/wake cycle
-
Planning a rest
period following physical exertion
-
Setting limits on
strenuous work activities
-
Conserving energy
for specific activities
-
Managing stress
-
Avoiding foods with
high sugar content
Finally, certain
vitamin and mineral deficiencies can contribute to fatigue. Supplemental
vitamins may be recommended in these cases. However, supplemental vitamins
for patients who do not have these deficiencies do not help and could even
be harmful.
83. Now that
my treatment is over, why am I not happy about it — or at least relieved?
M.L.'s comment:
First, you should keep
in mind that your treatments may not end. I thought that because all of the
visible tumor was removed during my craniotomy and I had received
successfully radiation treatments that my chemotherapy treatments would be
“short-lived." After receiving treatments for 12 months I was presented
with a number of different options, one of which was to discontinue
treatments. After looking at all of the information, my husband and I
decided that it would be best for me to continue with my treatments.
Even though I
continued with the treatments, I still had many questions such as, “what if
my tumor starts to come back even though I stayed on chemo?” or “how long
will I have to be on chemo?” and “what will the effects on the rest of my
body be if I stay on chemo?” These are tough questions to get answers to
because ultimately the decisions must be made by you and your loved ones.
The doctors can provide you with some of the answer, but they have to be
careful not to tell you what to do. To this day, I still struggle with
wanting to know the answer to “Will I have to take certain medications
forever?”
If you aren't happy or
relieved when your treatments end, remember that this is a very common and
normal experience. Most people battling brain cancer have a fear of
recurrence. This fear is especially difficult to deal with when treatment
ends because your healthcare team is no longer surrounding you on a regular
basis. There is a natural sense of loss and fear, but you can't allow the
fear to take control of your life. Remember, you are in control of your
emotions. Part of that control is to be aware of your fears. Don't let your
fears dictate the way you live your life.
You have probably
realized that you can't control your future, but you can have a positive
attitude and live one day at a time. This is a great time to get involved in
brain tumor support groups if you haven’t already. You can share your fears
and emotions with other members of the support group, and there is a very
good chance that those same fears and emotions have been felt by other
members of the group.
You should also
remember that your family and friends are still there for you, even after
your treatment ends. Don’t be afraid to share your feelings with them and
look to them for support and understanding. Also, make sure that you take
time to do the things that you enjoy.
All you can do is live
one day at a time, but don’t be afraid to seek professional help for
counseling if you feel that your fears have become excessive.
84. I didn't
need physical therapy after my surgery but I've always been physically
active. Can I resume regular exercise?
M.L.'s comment:
The answer to this
question depends on your particular situation. I would recommend you consult
your doctor; however, in my opinion you should strive to begin or resume
some sort of exercise as soon as your doctor approves. When I started
exercising again I felt that I needed to do it in order to assist in my
rehabilitation. I felt like the exercise was helping me to keep up my
strength. I remember my doctor telling me that it was good to exercise
because it wasn't good to be too sedentary, even in the post-op period. She
told me that if patients don't stay active, they are at a higher risk for
blood clots in their legs. Another reason why I was eager to start
exercising was that the steroids I took contributed to my loss of muscle
strength. I was happy to be able to start exercising so I could gain back
that strength.
Keep in mind that
exercise can be anything from a walk around the block to spending 30 minutes
on an exercise bike. When I started exercising again, I didn't try and
overdo it. I just wanted to be able to resume some sort of activity. If my
doctor told me I could start out with a walk around the block and no more
then that is what I did. As I was able to regain my strength, I gradually
was able to increase my level of exercise.
Another bonus is that
people who exercise generally feel better mentally as well as physically. I
think this is particularly true when someone fears that they have lost
strength or coordination after surgery. Working to regain strength and
flexibility is an important part of getting well.
85. Will I
be allowed to drive?
Driving is clearly a
complex task that requires multi-tasking on a level that many adults take
for granted. For parents who have had a teenager learning to drive, the
anxiety of allowing a sixteen-year-old access to the family car is well
understood. Will your teenager anticipate all the hazards on the highway,
the stopping distance, and the noise distractions within the car? Insurance
companies, of course, know that learning to drive is difficult, which is why
rates for young drivers are typically high.
Relearning to drive is
no less difficult when a patient has undergone surgery for a brain tumor.
Although there may not be apparent motor weakness, visual abnormalities, or
blind spots, patients may have slower reaction times and a decreased ability
to note subtle environmental clues in traffic. Many neurosurgeons do not
allow patients to drive for 6 weeks following surgery. Some neurosurgeons
recommend that patients permanently surrender their driver's licenses.
Patients who have
suffered seizures, even without loss of consciousness, are restricted from
driving. In some states, the patient must be seizure-free for a least one
year. The doctor must document that the patient has been counseled regarding
driving. Doctors who do allow their brain tumor patients to drive often only
recommend drives that are absolutely necessary and involve limited distance,
light traffic, and good visibility.
There are
rehabilitation programs that perform an assessment of driving using either a
simulator or an actual road test under controlled conditions. Reaction time,
attention to traffic, judgment of stopping distance, and depth perception
are all important facets of relearning to drive.
86. How should I tell
my family and friends about my diagnosis?
M.L.'s comment:
Telling someone that
you have a brain tumor isn't an easy thing to do, especially to a family
member or close friends. In many cases, however, it can be more helpful for
you to share your situation with those who care about you the most. They can
be there to provide support and also help you to make some of the tough
decisions that you'll face. Because there are so many different brain tumor
types, I found it necessary to share a great deal of information with my
family and friends so that they really understood how serious my illness
was. My husband was incredible when it came to this aspect of talking about
my situation. He helped me find out as much as possible about brain tumors
by gathering information from the doctors as well as the Internet.
My husband, Duane,
told my parents about my brain tumor, and then my parents informed the rest
of my family. Fortunately, my parents have medical backgrounds, so they
could relay the information accurately. If necessary, your doctors and other
medical support staff can offer support when you tell your family and
friends about your illness. In my case, my parents continued to relay
updates to the rest of my family because they all live in Tennessee.
When I was first
diagnosed with a brain tumor my brother, Dennis, and his wife came out to
see us in Plano, Texas right away. They came before my mother and father did
because they were able to leave town right away. Even though I think I was
numb for most of the time that they were here (which was only a few day), it
was still very comforting to have other family members with me at a time of
extreme crisis. My parents came out for my surgery and stayed with me for
several weeks. After they left my sister, Annemarie, came out and stayed
with me for almost two weeks.
I remember Duane
telling me about how he told our friends Gil and Jayne. Gil's a real tough
guy on the outside, but he was very upset. Jayne was really upset and
couldn't talk about it without starting to cry, but both of them were there
for us no matter how hard it was for them. Gil was great because he always
tries to be positive. When appropriate, he would try to interject a little
humor somewhere just to keep us laughing. I'll never forget when he came to
the hospital wearing black jeans and a black shirt. Duane later told me that
Gil had taken a piece of paper and stuck it in his collar so that he
appeared to be a priest. It was hard not to laugh at him pretending to be a
priest! The funny thing was as soon Gil took the fake Roman collar out, my
real pastor arrived at the hospital to see me.
In many cases, when I
told a friend that I had a brain tumor I found it easiest to get straight to
the point and just say, "I was recently diagnosed with a brain tumor." Once
they got over the shock of what I said, I found the support from them to be
overwhelming.
At one point my
husband said he thought that he should postpone his schooling. I remember
telling him that we had many friends who wanted to help. I didn't think it
was right or fair for him to stop his life if he didn't have to. I was
adamant that he continue with school and he did, but he would have stopped,
if I had asked him.
I will also say that
while so many people were supportive, there were a few friends that seemed
almost uncomfortable in dealing with my illness and being there for me. At
first this hurt my feelings, but I later learned that this is a common
occurrence. There wasn't a thing I could do to change it. I just came to the
realization that dealing with my illness may have reminded those friends of
a sad situation that they may have previously experienced, or that maybe
they just didn't know what to say. I decided to focus on the fact that I had
many more friends who were able to be there with me, and that's what was
important.
87. How do I
tell my young children that I have a brain tumor?
M.L.'s comment:
Although I don't have
children of my own I have several friends with brain tumors that do have
children. I have talked to them quite a bit about this subject and have also
seen and read information that is intended to be helpful when telling young
children that you have a brain tumor. The following comments summarize what
I have either been told by others with children or have found to consistent
with information that I have found in other sources.
First of all, always
be honest with your children. If your children sense something unusual is
happening, then they may use their imagination to create a problem if they
aren't told the truth. If that happens what their minds may invent may be
much worse than the truth. You'll need to address the children’s concerns
and talk with them in words that they understand. I have been told that if a
brain tumor is described fairly simply to a young child such as, “daddy has
a lump in his brain that isn't supposed to be there,” that it's easier for
them to understand. They need to understand what it means for you to go to
the hospital or perhaps have to stay in the hospital for a period of time.
Most people that I have spoken to have suggested that a parent needs to
answer a child’s question honestly and simply in words that are most
appropriate for the child’s age. Talking with your children in a loving,
truthful, and reassuring manner is essential to their well-being.
Second, be aware of
your timing, it's best to talk to your children as soon after your diagnosis
as possible. Tell your children as much as you think they need to know in
order to calm their fears, but not necessarily everything. In other words,
too much information may cause them to worry about things that they can't
change. The older the child, the more information you should provide.
Tell your children
that you may have treatments that may cause you to lose your hair and make
you feel tired. It’s OK to tell them that these things are not normal but
are part of the process of dealing with a brain tumor. If you're going to
have surgery to remove the tumor, you should share this information with
them as well. Again, what you say and how you say it will depend on the age
of the children. Your children also need to know that having a brain tumor
and the signs and symptoms that go with it isn't their fault. Let them know
that they can’t "catch" your condition by being close to you or touching
you.
Don’t forget to ask
your children if they have any questions. You may be surprised by their
concerns, but keep in mind that you also need to be prepared to answer their
questions. They may ask you if you're going to die. Your response will
depend on the age and maturity of your children. Your specific condition
will also be a factor in your response. Once again, you must be truthful
with them, but you must always encourage them to be hopeful. Help your
children understand that a person who has a brain tumor doesn't necessarily
die from it.
A friend of mine told
me that she felt it was important to tell her children’s teachers. The
teachers and school counselors were very supportive and helped her better
understand how her children were coping with the situation.
Finally, it's OK if
you start to cry when you are telling your children. Crying is a very normal
reaction when talking to your children about your situation. Just make sure
you tell them why you're crying. It may be because you're sad that you're
sick or that you are nervous about some of the changes that may take place
as a result of your illness. You should always reassure your children that
you'll talk to them about what is happening to you, and that you will do
everything you can to make sure that their needs are taken care of by family
and friends. Remember to encourage your children to stay positive and to be
hopeful.
88. How will
treatment of my brain tumor affect my sexuality?
M.L.'s comment:
The answer to this
question depends on the person. Some people with brain tumors lose their
desire for sex, which can be very normal. There can be a number of causes
for this. The location of the brain tumor may be a factor, but because no
one has been able to isolate a single area of the brain responsible for the
sex drive, the location of your tumor alone can't tell you how your libido
will be affected.
Treatments for brain
tumors can also have a significant affect on your interest in sex. Whether
your treatment involves radiation, chemotherapy, or even the anti-nausea
medication, all of these therapies have direct effects on sexual desire. You
can check with your doctor to see if any of your treatments have been known
to affect libido and find out how long such effects will last. There are
also indirect effects on libido, such as fatigue from radiation or
chemotherapy, general weakness, nausea from chemotherapy, and swelling or
pain from steroids. Needless to say, when you don't feel good, you may lose
interest in sex. However, once your treatments are over, your libido should
return.
Depression may also
have a negative impact on libido, and having feelings of depression is
common for someone who has a brain tumor. In many cases, this is also
treatable. Talk with your doctor to determine the best method to treat your
specific situation.
Finally, there may be
other factors that may affect your interest in sex. For example, some brain
tumor patients may just feel physically unattractive because they may have
lost their hair during chemotherapy or perhaps they have gained weight from
steroids. Roles within the family may have changed because the patient who
used to be the "breadwinner" is now more dependent on other people. All of
these factors can be identified and resolved in individual or family
therapy, however the most important thing to remember is that good
communication is half the battle.
89. Friends,
co-workers, and neighbors who have heard about my brain tumor offer to help,
but I'm not sure what I should tell them. What do caregivers and loved ones
need to know in order to best support a person with a brain tumor?
M.L.'s comment:
First of all, patients
and caregivers need to know that they shouldn't be afraid to ask for help!
It's highly likely that you have many family and friends who want to help.
Now is the time to let them. Some of our closest friends provided not only
moral support, but practical help when we needed it the most. For example,
our dear friends, Gil and Jayne, were tremendously supportive when my
parents were here for my surgery. The day of my surgery I had to be at the
hospital at 6 a.m., but my surgery wasn't scheduled until around 9 a.m.
Duane took me to the hospital that morning, and then around 8 a.m., Gil and
Jayne picked up my mother and father and took them to the hospital. Jayne
even came by a few days later to take my mother to the salon so that she
could get her hair done. The help we received from Gil and Jayne gave my
husband more time to be with me. They also helped to relieve some of the
stress that comes along with feeling that the caregiver must be responsible
for everything.
All of our closest
friends continued to be there for not only me, but also for Duane. Gil is
one of Duane's best friends and sometimes I don't know what Duane would have
done without having another guy there to just listen and be sympathetic.
Many times Gil would give Duane advice on how to deal with some of his fears
and concerns about me. He tried to provide as much support as possible.
Duane and I were also
able to turn to other close friends such as Bill and Beth. Beth is my dear
friend who took me to the emergency room the day I found out that I had a
brain tumor. Beth and I have known each other for over 10 years. We used to
work together at Nortel Networks. We've been through a lot of ups and downs
in each others lives, and we've always been there for each other. She also
happens to be married to Bill, whom I got to know while working at Nortel
Networks. Beth and Bill have been significant influences in my life and
career advancement for the last 5 years. They have become close friends with
us. At the time of my diagnosis, Bill was working for Nortel Networks. One
of the greatest things that Bill said was that I didn't need to worry about
my responsibilities at work. He told me that I had given Nortel Networks
more than 10 years of my life and now it was time for Nortel Networks to
give some of that time back to me. I still don't think that Bill knows how
important that statement was to me, even though I've tried to tell him many
times. It's difficult to express the peace of mind those words gave.
Receiving such support from one of the most senior executives at my company
allowed Duane and I to completely focus on the treatments that would help me
get better.
As I started to get
better, we would have our friends over. Just being able to share good news
and bad news with close friends like Bill and Beth or Gil and Jayne provided
so much support. Duane and I could tell that it was important to them to
understand what we were going through. Our friends were there to listen,
offer advice, and sometimes to assist us in getting additional information.
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