Survival Guide To Breast Cancer
Table
of Contents
I. About the Author
II. Acknowledgments
III. Author’s Story
Diagnosis with Prognosis
Updated Prognosis
IV. Physician’s Philosophy
V. Coping with...
Hair Loss (Eyebrows & Eyelashes too)
Mouth Sores
Mood Swings
Financial Burdens
V. Caregivers
VI. All That Glitters
VII. Survivor’s Wisdom
VIII. Getting on with Life
IX. Financial Matters
X. The Positives
XI. The Nursing Side
XII. Resources & Information
About
the Author
Kathy Karlsson and her
husband Tomas currently live in Rhode Island.
Acknowledgments
My husband, Tomas and my
children Juanita and Marilyn gave me the love, support and encouragement needed
to make it through the hardest part of this disease and subsequently work on
this book. Additionally, without the knowledge and persistent work of Dr. Jon
S. DuBois, I would not be alive today to even
begin work on this book.
Author’s
Story
The
Diagnosis with prognosis
While taking a shower in
January 1999, I noticed a small lump in my right breast. At the time, my
husband and I were self-employed and insurance was a luxury we just couldn’t
afford at the time. So likewise was healthcare. I told myself that the lump was
probably nothing serious. I had heard before that drinking too much caffeine
can create lumps of this nature. Everything I read about lumps in the breast
indicated that 85% of the time these were benign. So with the odds on my side,
I decided to ignore the lump. Besides, I was only 37 years old.
By the end of May the lump
had grown to the size of a golf ball. I simply could not ignore it any longer.
I made a few phone calls to find out what I could do in order to have the
medical care I needed without insurance - if indeed I could have medical care.
I first called the local health department. They scheduled me right away for a
screening on June 3. I then asked them what would happen if it were positive.
They informed me that I would be on my own at that time. I explained to them
that I probably would rather not know than to know and not be able to do
anything about it. They apologized for not being able to provide any other
services but suggested that I might be able to find some organization to help
if it was indeed cancer.
So now with an appointment
for a screening, I kept my fears at bay and decided to search the Internet just
in case my worst fears were realized, which of course the odds were that I did
not have cancer. I found the National Institute of Cancer. I called their
hotline and asked a few questions. They again assured me that most lumps are
benign, however they also advised me that if it were indeed cancer, they had a
list of hospitals that would treat me at no charge. They gave me the name of a
nearby hospital. The University of Mobile,
Oncology Department. They also said they would send some booklets to
help explain various procedures that I may experience. They were extremely
helpful.
I spoke at length with a
woman at the oncology department at the University. She advised me that all
patients are treated and if I couldn’t pay, I would still be treated. After I
hung up the telephone, I cried uncontrollably. In my mind, it would be worse
knowing I had cancer and not being able to do anything about it, than not
knowing if the lump was benign or malignant.
My husband Tomas was very
comforting. He was reassuring me that it most likely was not malignant and that
on June 3, it would all be over.
Well on June 3, I drove to
the health department for my screening. Tomas had to meet with a client so he
stayed behind. When I got to the health department and filled out my paperwork,
it didn’t take them long to call my name back for the screening. A nurse led me
to a nearby room and closed the door. She asked me to get undressed behind a
screen and to put on a gown that was left there. I did as she asked and lay
down on the exam table. She began feeling the lump and said she would like to
get another nurse to check it as well. When she left the room, I lay there thinking
the worst. It is cancer and she is going to being someone else in here to break
the news to me. So when she reentered the room with another nurse, I steeled
myself for the news.
The other nurse began
feeling the lump and both came to the same conclusion. The lump is not
consistent with cancer. It is from drinking too much caffeine. I should cut out
caffeine and I’ll see a difference in a month or two. Whew! That was close. But
just to be on the safe side, she continued we want you to get a mammogram. She
said that if they found something suspect, then I would be asked to submit to
an ultrasound. But again, she really didn’t think there was a problem. So an
appointment for a mammogram was scheduled for June 5.
June 5th came and the
morning was bright. My husband and I both thought there was nothing to be
overly concerned about. He was meeting
with a client again so my daughter Juanita rode with me for the exam.
We sat quietly in the
waiting room when my name was called. I went in for my mammogram. After
enduring about 30 minutes with that machine, I came to the realization that it
must have been invented by a man. After my exam, the technician asked me to
wait in the waiting room to be examined by ultrasound. That’s when I realized
that I might not be safe after all.
I spoke quietly and
nervously with my daughter while waiting for the ultrasound technician to call
my name. Juanita did her best to keep me cheered up though we both were well
aware of what this meant. Suddenly the
door opened and I was being ushered back to the dark room where the ultrasound
would be performed.
The technician was a young
girl about 23 or 24 years old. She deftly began her work to reveal the lump on
the small monitor next to the bed I was in. After she had made a few pictures,
she asked me to wait while she got the doctor. I asked her if what she saw was
consistent with cancer. She smiled at me and said, “Let me get the doctor”.
That’s when I knew. If it were not consistent, she would have said so. I kept
looking at the ceiling to regain my composure. Tears were threatening to form.
I had to maintain until I got out of the hospital or I would lose it entirely.
Just then the doctor walked in. “Mrs. Karlsson”, he began. “I’ve looked at your
films and I’m afraid to say that I am extremely concerned by what I see.” Your
films are consistent with cancer. I would like for you to see a surgeon right
away to have that lump removed. I am so very sorry.” I assured him I would see
a surgeon as soon as possible and thanked him for his time.
I left the room in a bit
of a daze and upon seeing my daughter, I gave her a smile. If she started
crying, I would be soon to follow. We walked out of the hospital and she kept
asking me what the doctor had said. I told her I would tell her when we got in
the car.
We got in the car and I
began to cry softly. She did her best to cheer me up. We stopped at a
convenience store on the way home. Juanita asked me if I wanted a regular coke.
She said, hey caffeine can’t hurt now. That bit of levity is just what I
needed.
I cried a bit on the way
home. Juanita did her best to comfort me. When I got home, Tomas met me at the
door and told me that our client had just left. I walked into our bedroom with
him and told him I had breast cancer. We held each other as I cried some more.
Just then the telephone
rang. It was the health department. The doctor had already informed them of the
diagnosis. They had scheduled an appointment for me the next day with the
surgeon. They then told me that they were paying for this also. Things were really
happening so fast now.
June 6, Tomas and I walked
into the surgeon’s office. There we met with Dr. Jeffery Caylor. He wanted to
schedule the surgery as soon as possible. So June 17 was the date chosen for
the surgery. He explained that I would go into the hospital on the morning of
the 17th and would be released later that afternoon after the surgery.
June 17 arrived and we
went to the hospital. Although I was scared, Dr. Caylor assured me that there
is a possibility in getting all of the cancer and then undergoing radiation.
Survival is good in those circumstances.
I made it through surgery
fine. Tomas was there at my side when I awoke from the anesthesia. Though I was
sleepy, the doctor released me to go home.
I was to be in his office again next week for the results of my surgery.
I would know at that time if it was benign or malignant and if I would need
radiation.
When I got home and lay
down on the bed, I looked at the bandage across my right breast and cried. How
could this be happening?
The next week Tomas and I
were in Dr. Caylor’s office. He walked in with my chart and sat down across
from us. He said, “The news is not good. The cancer is malignant but it is
treatable.” The cancerous cells were spread
out further than they originally thought and he would need to operate again and
take out some lymph nodes as well. He further suggested that I get breast
reduction surgery at the same time so that he would be able to remove more
tissue. Coordination would now begin to attempt to get a plastic surgeon to
operate at the same time as Dr. Caylor to take care of my malignancy.
My husband began his new
job in Massachusetts on July 5, 1999. While he was looking for housing, I
stayed in close touch with him while trying to work something out with the
plastic surgeon. Again, since I didn’t have insurance, this would later prove
to be an impossibility. It began to seem that life or death was directly
dependent upon insurance coverage and our country is supposed to be the world
leader.
We decided to move up the
date that I would re-locate to be with my husband in Massachusetts. He would
fly back to Alabama and I would have everything packed and ready to load in a
U-Haul truck. During this time, I also made a preliminary appointment with Dr.
Nicole Herb in Concord, Massachusetts for my cancer situation. My appointment
was scheduled for August 24. Upon entering her office, I advised her that I had
begun experiencing pain in my right side. She told me she didn’t have time to
address all my issues and that if the pain didn’t go away by my next
appointment, which was in 45 days, then she would check into the pain further.
Four days later, the pain
in my side had become very intense. I found another Doctor in Littleton where we
now lived. Dr. Peter Johns had his Physician Assistant examine me. She had me
lie on the exam table and she pressed around on my side. She then consulted
with Dr. Johns and asked me to have an abdominal CAT scan done at Nashoba
Deaconess Hospital.
The following Friday I was
in Dr. Johns’ office. He had asked my husband to come too. He said the news
wasn’t good. “It appears that your cancer has spread to your liver. It’s
life-threatening.” My husband asked how much cancer was in my liver as I just sat
there stunned by the news. Dr. Johns’ stated, “The report shows that the
lesions are too numerous to count.” I explained to him that I had already
submitted some information to Dr. DuBois’ office to obtain an appointment for
my breast cancer. He assured me that he would call Dr. DuBois’ office and
advise them of the serious stage of my illness.
With that information, we
quietly left his office and anticipated the weekend. Dr. Johns had given me
some pain prescriptions to get me through the weekend and until I obtained an
appointment with Dr. DuBois. That weekend the pain in my right side worsened
and I did indeed require the pain medication.
Finally I made it through
to Monday. Unsure if I could make it through another day with the now
excruciating pain, I received a phone call from Dr. DuBois’ office. Dr. DuBois
would see me after his clinic closed at 5:00pm. He would stay late due to the urgency
of my situation.
Tomas and I walked into
his office at 5:00pm. We were escorted into an empty exam room by one of his
staff. Within a few minutes he entered the room. He looked just like his photo
that I had seen a couple of months ago on the Internet. He looked smart and
distinguished. This is definitely the type of man I want in my corner when it
came to fighting this disease.
His look was grave. “Kathryn,” he
began. That was it. I knew I was in trouble. No one ever called me Kathryn but
my mother and that was only when I was in trouble. I focused on what he was
saying as Tomas squeezed my hand in support. He spoke again; “ I’m not going to
lie to you. It’s bad. It’s a life and death situation here. Right now it’s only
a matter of weeks. We can try chemotherapy. If you respond, that will buy us
some time, but if you don’t we will really be in trouble.” I told him that I
was quite willing to try the chemotherapy. “Since our kids stayed in Alabama”,
I explained “we want to fight this as aggressively as possible.” He told me that there would need to be a
couple of tests to do in order to begin the chemo. First I would need blood
tests done at his office. An appointment was scheduled for Thursday morning.
The second would be a MUGA (Multiple Gated Acquisition) scan. This heart exam
is a non-invasive way to evaluate how well your heart muscle contracts and
expands while you rest. It would be completed on Friday. The chemo would begin
on the following Monday on an outpatient basis.
So it was done. We left
his office quiet and somber. Dr. DuBois told me that my shortness of breath was
due to the inflammation of my liver. Apparently the inflammation was getting
worse if the shortness of breath was any indication.
When I would go to the
grocery store, I would have to hold onto the basket at all times. I really
needed that for the support. Walking from one room to the next would exhaust
me.
On Thursday morning, Tomas
would help support me as I would do my best to walk into Dr. DuBois’ office.
The shortness of breath and pain was really getting bad now. I could barely
stand to sit in a chair. I could feel my own demise just around the corner.
Half-afraid and half-welcomed. Beth, one of the chemo nurse’s, escorted my
husband and me into the family conference room. She told me to lie down on the
couch if that would make me more comfortable and it did. She left to get a pillow
for my head. When she returned, I lay there and listened as she explained the
chemotherapy protocol. Dr. DuBois came into the room and talked with us
briefly. He explained that he had a meeting to go to but would be back later to
check on us. Then he left. Minutes
later he returned. “Kathryn, I don’t like the way you look”, he started. “I
would like to admit you to the hospital now and start chemo as soon as
possible.” I almost cried as I felt
relieved. I felt as though once I was admitted the pain would go away and the
breathing would become easier.
Soon a volunteer with a
wheelchair came in to take me to my new room in the North wing of the hospital.
So on September 9, 1999 I became a patient on the oncology floor of Emerson
Hospital. That afternoon, Dr. DuBois came into my room. He explained the
further procedures that I would be undergoing. Yes, I understood chemo needed
to be started soon. Yes, I understand that with my pain and shortness of breath
at the extent that was, chemo can no longer wait until Monday. Tomorrow on Friday, I would have my MUGA
scan as scheduled. However, I would need a “Port-A-Cath”. Port-A-Cath is a
device that is used to make administration of chemotherapy easier. It can also
reduce the risk of certain chemotherapy-related complications. This device is
placed under the skin, in upper part of the chest. It has a small reservoir
that is connected to a major vein inside the chest. This device facilitates
administration of chemotherapy into the venous system. Without it, after
numerous placements of an IV for chemotherapy, my veins would begin to form
scar tissue making further IV usage difficult if not impossible. Dr. DuBois
explained to me that right after the surgery it would feel like someone kicked
me in my chest.
On Friday I had my MUGA
scan done and that afternoon the surgery was completed. Dr. DuBois was almost
correct. It felt like a mule kicked me in my chest, many times! But that soon
subsided and by the next day there was very little pain from the surgery.
Chemo started on Saturday.
It wasn’t as traumatic as all of the movies portrayed it. A tube of red liquid
was injected into my new port. It didn’t burn and there was no pain. I didn’t
feel a thing. Afterwards I waited for the nausea and subsequent vomiting that
is always shown in the movies, yet it never came. Boy, I have to stop watching
so many movies. This procedure was repeated two more times. On Monday morning,
Dr. DuBois came to check on me and released me from the hospital. I would be
back in his office in about 4 weeks for more chemotherapy. I was feeling much
better and even the pain caused from the inflammation of my liver was much
better. The chemotherapy was doing its job.
And this was the beginning of a long and tough road back to recovery.
PHYSICIAN
NOTES
Dr. DuBois’ prognosis when
I was first admitted to the hospital.
Dr. DuBois’ updated
prognosis after almost a year of therapies.
PHYSICIAN’S
PHILOSOPHY
Dr. DuBois’ credentials
Dr. DuBois’ thoughts on
what it takes to beat cancer or at the least have an improved quality of life.
V.
COPING WITH...
Not everyone will suffer
the same chemotherapy side effects nor will each case of nausea or mouth sores
be as severe or as mild as the next person’s. Remember that almost all side
effects are only short term and will gradually disappear once the treatment has
stopped. The main areas of your body
that may be affected by chemotherapy are those where normal cells rapidly
divide and grow, such as your mouth, digestive system, skin, hair and bone
marrow (the spongy material that fills the bones and produces new blood cells).
Whatever symptoms you experience, I have compiled a list of helpful hints that
may make your experience a little less memorable. As always, with any side effects you experience, be sure and
discuss them with your doctor. They can easily prescribe medications to
counteract or at least ease the side effects you encounter.
HAIR LOSS
Unfortunately hair loss
can result from the use of some chemotherapy drugs. Anything from a slight loss
of hair on your head to complete hair loss including your eyebrows and
eyelashes. While this is difficult to deal with it makes it easier to realize that
it is almost always temporary.
After my second treatment
of Adriamycin, I began to lose my hair. I thought I was prepared for it. I had
read all the literature, talked to a few women who had already gone through it
and had even bought two wigs that I would use when it happened. It was a Friday
night and I was getting ready for bed. I ran my fingers through my hair and a
large clump of hair came out. I looked at it in horror, slid to the floor and
cried. Nothing prepares you for that. My husband came in to see what was wrong
as I just sat there on the floor, tears in my eyes and this large clump of hair
in my hand. I looked up at him and simply said, “It’s happening.” He sat on the
floor next to me and put his arms around me. We sat there for about thirty
minutes when he asked me if I was ready to have my head shaved as we had
discussed this previously. I took a deep breath and said yes, I was. So within
an hour, my loving husband had taken off the rest of my hair. It was less
traumatic that way as well as more sanitary. There would not be hair falling
off all over the house.
The positive approach is
to realize that you will no longer have to shave your legs or underarms. That
was almost enough of a perk for me.
Use of wigs and turbans
also helps you feel more complete. You’ll find some excellent resources at the
end of this book to find accessories that fit your personality and lifestyle.
MOUTH SORES
This is difficult to deal
with as it generally will keep you from eating and drinking depending upon the
severity of the sores. Some people never get them at all while others may
experience more severity than most. I have found an excellent recipe for candy
that will soothe the mouth sores. I had severe mouth sores and this candy was
quite soothing.
This hot pepper candy is
absolutely wonderful for mouth sores/sore throat/etc. Simply put a small piece
inside your mouth and let it melt.
1 cup sugar
3/4 cup light corn syrup
2/3 cup water
1 tbs. cornstarch
2 tbs. butter
1 tsp. salt
2 tsp. vanilla
1/2 tsp. cayenne pepper
8X8X2" buttered pan
In a 2-qt. saucepan, add
sugar, corn syrup, water, cornstarch, butter and salt.
Over medium heat, stir
constantly until reaches hard ball stage. (hard ball stage is when a bit of the
candy is dropped into very cold water and forms a ball of sorts) candy
thermometer would be 256 degrees F.
Remove from heat and stir
in vanilla and pepper. When cool enough to handle, butter hands and pull until
satiny and stiff.
Pull into long strips, cut
into 1" pieces and wrap with wax paper.
Or if you prefer, just
pour into a buttered plate and cover it.
When you want some, just use a spoon and put about a teaspoon or so into
your mouth and let it melt.
You can make this candy
soft or hard depending on your preference. It tastes like really good caramels,
with a kick.
You can also eat popsicles
and other cold things as they are very soothing. Throat pain can be eased with
yogurt.
You should rinse your
mouth many times a day with a solution of 1-tsp. baking soda to a 1/2 C water.
It reduces the acidity level in the mouth.
And of course your doctor
can prescribe solutions and medicines that will help you with the sores and
pain.
MOOD SWINGS
This happens although it’s
worse in some people than in others. Just realize that it is the chemotherapy
as well as dealing with the diagnosis of cancer itself and that you aren’t
going crazy. It is only temporary.
MEMORY LOSS/FUZZY THINKING
This is easier to deal
with if you can find humor in it. To help you do this, I’ve added a little poem
I found on the Internet one day, the author is unknown. And like most of the
side effects of the chemotherapy, it is almost always temporary.
Chemo brain
Just a line to say I'm
living,
That I'm not among the
dead,
Though I'm getting more
forgetful,
And more 'mixed up' in
the head.
For sometimes I can't
remember,
When I stand at the foot
of the stairs,
If I must go up for
something,
or I've just come down
from there.
And before the fridge, so
often,
My poor mind is filled
with doubt,
Have I just put food
away, or
Have I come to take some
out?
And there's times when it
is dark out,
with my nightcap on my
head,
I don't know if I'm
retiring,
or just getting out of
bed.
So, if it's my turn to
write you,
There's no need in
getting sore,
I may think that I've
written,
and don't want to be a
bore.
So remember, I do love
you,
and I wish that you were
here.
But now it's nearly mail
time,
So I must say,
"Goodbye, dear".
There I stood beside the
mail box,
With a face so very red,
Instead of mailing you my
letter,
I had opened it instead.
Source: Unknown
FATIGUE
Oh the fatigue. I recall
that many times before as occurs now, I wish I could do simple tasks around the
house. Doing dishes or the laundry seem a monumental task at times. My doctor
prescribed Ritilan for me on occasion. This really helped a great deal. The one thing that I found most helpful is
that when you are tired, lie down and take a nap if at all possible, or simply
just relax and rest. Your body needs it and I found out that I function so much
better when I give in to my needs. There is no quick fix for the fatigue you
must simply learn to deal with it in your own way. However, I found that you
should rest when you feel compelled to.
LOW BLOOD COUNT
The low blood count is
caused from the chemotherapy that you are on.
Taking multivitamins and eating right will minimize the effect of a low
blood count and will help to boost your count up. Care should be taken not to
cut yourself with a razor because your platelets are likely low as well. All
fruits and vegetables need to be washed carefully as your immune system is
severely compromised at this time.
MENOPAUSE
If you haven’t gone
through menopause by the time you were diagnosed with cancer, chances are very
good that the chemotherapy will push you through that door. I suffered from
severe hot flashes and night sweats. Since I have cancer my doctor was reluctant
to use any type of hormone based drug to relieve these symptoms. Instead, he
asked that I take two capsules of vitamin E daily which I did. After about six
weeks time I suddenly realized I no longer was suffering from the hot flashes
or night sweats. I’m not really sure when that happened. They left about as
quickly as they had first appeared.
NAUSEA
I experienced extreme
nausea after about the first month of treatment. I found that drinking iced tea
and eating fresh fruits often made the nausea a little easier to bear. And as
always, your physician can prescribe medications for you to combat the nausea
if it is too much for you to tolerate. You should always consult your physician
if you are vomiting for more than 24 hours.
NUMBNESS OF THE
EXTREMETIES
This was an interesting
effect of the chemotherapy. It felt like my toes and fingers were always
asleep. At times it wasn’t too bad. At others, it made walking very difficult.
At the time, we lived on the second floor of an apartment complex. Walking down
the stairs became very tricky and at times a dangerous thing to do. With
patience from my husband, I learned to navigate the stairs carefully. Many
times while I was holding a glass I would quite simply drop it. I couldn’t feel
my fingers most of the time and I therefore couldn’t feel the glass. I found
that soaking in a very warm tub of water would minimize the constant tingling
in my toes and fingers. At night, ativan (another drug prescribed by your
physician) would help to ease the tingling so that I could sleep. After having
had the last of my Taxotere regimen (the drug responsible for the tingling)
about eight months ago, there is still some residual tingling that I
experience. I hardly notice it now and it in no way interferes with my walking
or picking up objects. My doctor doesn’t know if all of the tingling will
disappear but it is now something I can live with.
LOSS OF SEXUAL DRIVE
This is completely
natural. You are still emotionally coming to terms with your illness and in
some cases have had radical surgery that makes you feel less than sexual.
Depending on the type of chemotherapy you have experienced you may also be
dealing with losing your hair. At first, sex was the last thing on my mind. I
remember discussing this with my doctor when I felt that I had overcome all of
my emotional obstacles and finally had my hair growing back. This was about
seven months into my diagnoses. After a
lengthy discussion he suggested that I wait just a little while longer. I must
admit I felt frustrated when I left his office. I was convinced I needed a pill
of some sort to bring my sexual desires back into my life. Well as always my
doctor seemed to know what he was talking about. Maybe it was just that I had
finally voiced my concerns that alleviated the emotional block that I had about
sex, I have no idea. But within about three weeks of our conversation, my
husband and I started really enjoying each other again. So if it’s possible, discuss the problems
you’re having with your doctor and most importantly, relax. It will happen,
maybe not with the frequency that you had before your diagnosis, but that will
come.
VI.
SUPPORT & REFLECTION
Whether your caregiver or
caregivers are your husband, children, relative, or close friends, they will
become your main support. In my case I have a wonderful husband and two
daughters who made it easier to deal with this disease. I don’t know what I
would have done without them. We have all shed tears together and yes, even
found humor in this illness. My daughter called me “Mrs. Clean” when I had no
hair. When someone forgets something in our house we all yell “chemobrain”. And
the list goes on. If you don’t find something to smile about, you will slowly
lose your mind while dealing with this illness.
It’s very important that
you have a support system whether that is a family member, friend or support
group. There will be times that you feel all alone. Facing your own mortality
is a very hard thing to do. You must have someone you can talk to.
For me, going through this
has led to great introspection. I learned a great deal about myself. I looked
at my relatives in a different light. I wondered if the bitterness I held
against my mother was really as important as I thought. So I called her, the
first time in 3 years. We had a wonderful reunion over the telephone and I
suddenly realized how trivial the past really is.
I used meditation as a
very effective way of relaxation. I spent that time dealing with all of my
emotional issues. Some that has been with me for awhile some that had just
manifested as a result of the cancer diagnosis. To meditate, I simply went into my darkened bedroom and asked my
kids not to disturb me. My husband would join me on most of these occasions. I
would have soothing music playing in my CD player. My favorite was of the
Native American variety. But please choose whichever type of music or chanting
or sounds that you prefer to relax to. Then I would close my eyes, and if my
husband was with me, he would hold my hand and we would just lie there and
breathe. I would think of my breathing in and out slowly, Being really
consciously aware of this. With my eyes closed, I would imagine myself in the
center of this small, uninhabited island. There was nothing around but sand,
water and palm trees blowing in a warm summer breeze. Every time I started to
think of something I would push the worries and problems back out to the ocean
so that nothing could touch me. I found
that I could do this much easier if I put released the bitterness and
resentments from my heart. Once I would do that, it all seemed so easy to do.
After about two weeks of mediation four times a day, I began to notice that the
bitterness and resentments were no longer there, I was finally sleeping easier
without medication and I was finally at peace. I finally felt like I was in
control of my disease rather than my disease controlling me. So whatever your
belief system you should pray, meditate or simply spend some quiet time by
yourself to revitalize and to gather my thoughts. Spending time of each day in
meditation has helped me to overcome and to deal with matters. Matters dealing
with my cancer, matters dealing with my children and matters dealing with
everyday life were made easier. Even if my cancer goes into remission, my
meditation has become a base on which I have learned to build so much that I
will continue to utilize it always.
GETTING
ON WITH LIFE
When I first found the
lump I went through denial. “It’s too much caffeine, too much stress, etc.”
After five months and the lump grew, I could ignore it no longer. I saw a nurse
at the health department. She suggested, “It’s too much caffeine, too much stress,
etc.” But just to be on the safe side, a mammogram was ordered.
The radiologist read the
mammogram and requested to do an ultrasound. Fifteen minutes later I was lying
on a table in a darkened room while a technician performed the exam. I asked
her what it showed; she told me that she would get the doctor. I knew it couldn’t
be good by her tone of voice. Minutes later the doctor returned to the room. He
said that the lump looked worrisome however, there was a chance that it was
benign. Great! I still had a chance!
A time was scheduled for
surgery and the lump was removed. A week later in a follow-up appointment with
the surgeon, I learned the truth. It was indeed cancerous. But stage 3 so it
was still quite treatable he said. I took comfort in those words.
After we moved to
Massachusetts and I learned that my disease was in reality stage 4 and had
spread to my liver, my questions began. “Why?” Why me? Why now? Why my family?
I’m too young!
After the chemo began, I
experienced three episodes of suicidal thoughts. The chemo was difficult and I
would be in the bathroom while the mouth sores ravaged me and the nausea was
too much. My husband would come into the bathroom and just hold me until the
thoughts passed.
Many nights later were
spent crying and telling my husband that I didn’t want to die. He again would hold me, console me
and talk me through it.
Then came the time that I
had to put the questions, the pity, the fear behind me. I knew that if I were
going to get through this, be able to sleep again through the night without the
nightmares, tell my family I love them without breaking into uncontrollable
sobs, and to enjoy whatever time I have left here, I would have to face my
fears, my mortality.
With my newfound purpose,
I began looking into meditation, which I found to be quite soothing and
revitalizing. I would relax in bed and meditate about four times a day. I began
to look deeper into my faith. Examining and re-examining it and in some cases
changing some of my beliefs. I took a serious look at what would happen if I do
die. My consolation would be that I would see my father and grandparents again.
And if as some people believe that we just die and that’s the end of
everything, then millions of people younger than me have gone on before and
I’ll make it just fine. After all, we all have to go sometime as the old adage
states.
Somehow after weeks of
contemplation and meditation, the acceptance of my demise settled upon me.
Don’t get me wrong, I’m not ready to go in any shape, fashion or form. But I
have come to accept it, whether my
time is next week, next month or thirty years from now. I think the key here is
to find or strengthen your belief system and work through your fears with that
belief system in place.
Sometimes keeping my
priorities in place is tough. But it seems that every time my priorities begin
getting askew, something happens to bring everything back into perspective.
For instance, I was crying
to my husband in the early days of my illness about the fairness of my getting
this disease so young. He comforted
me and two days later, I saw a nurse in the hospital that had breast cancer and
a mastectomy at age 21.
Another day I was complaining about the
fatigue and shortness of breath. At my next chemo appointment I met a man who
was wheelchair bound with an oxygen tank struggling to breath. At least I can
breathe and walk on my own.
Again, I confided to my
husband that I was tired of chemo. After all, it’s been almost a year. That
week at chemo, I met a man, Peter, who was just diagnosed with a genetic blood
disorder that affects the lungs. His prognosis? He’ll be fine as long as he
receives his weekly chemotherapy ... for life.
Yet everything gets put
back into perspective. So I’m
beginning to learn that whenever I start loosing my perspective of things,
something will happen, someone will come along and put it all back into a
proper view for me again. This belief system I have is what keeps me going and
keeps my feet planted firmly on the ground.
I spent last night in the
arms of my husband tearfully
explaining what I have learned from this horrible disease. I’ve learned not to
take my family for granted. I always end my phone conversations with them with
“I love you”. I enjoy each day to its fullest. I now make plans for tomorrow
and next month and next year and five years from now. I relax and don’t easily
get upset. I have inner beauty. All my hair doesn’t have to be in place. This I
learned during the time that I had no hair! I’ve learned just how truly deep my
husband’s love is for me. Many people go through their entire life never
knowing. So after all this, I must ask
myself. Is cancer truly a horrible disease? Yes, it can be life threatening and
ever so scary. But horrible? I have grown so much and learned so much about
myself through the course of this disease in the last year that I feel to
counter the atrocities of this disease at least I have grown from it.
In retrospect I have found
that to get through the cancer
diagnosis you need to:
·
Find or
re-examine your belief system
·
Face
your mortality
·
Learn to
love unconditionally
·
Let go
of bitterness and past resentments
·
And find
a confidant
After I did this, I found
dealing with the illness much easier. I felt like there was hope after all.
YOUR
ONCOLOGIST
Now that you’ve been diagnosed with cancer, it’s time to find an oncologist. For some, this can prove difficult. Perhaps your family doctor can refer you or a friend in the community. In my case, I was checking out oncologists on the Internet when I came to Dr. DuBois. I looked at his photograph on the web and thought he really looked intelligent. I read about his credentials and was equally impressed. Then I noticed a small pink ribbon on the lapel of his white lab coat. Yep, this is the doctor I want. I immediately felt comfortable with his portrayal in the photograph and short biography. And the rest as they say, is history.
Most of us have been quite
fortunate to find the oncologist that we
would literally trust with
our lives. He or she has been just the
person we needed to lean on through the worst of our illness. But then
something happens. In our case, my husband got a new job and we had to move.
Leaving your oncologist is like leaving family behind. You know you’ll be just
fine. You know that your oncologist isn’t the only person in the world who can
treat your cancer as effectively has he or she has. Yet, you would love more
than anything to take your oncologist with you. Well, it’s going to be tough,
but you won’t die from leaving your oncologist behind. And he’ll be alright
too. My problem is that since Dr. DuBois was my first, all of the other
oncologists I meet must measure up to his standards. The man literally saved my
life. How can anyone else measure up to that standard? Then when I think about
it and realize how unreasonable I’m being I look at my future oncologists in a
new light. Still in my eyes, it’s going to be hard for them to measure up but
I’ll give them some time to show me what they can do. And if all goes well, I’ll be able to say I found a doctor very
similar to Dr. DuBois.
I spoke with Dr. DuBois
before I left. I hugged his neck and shed a few tears and told him I would
never forget him. I told him that he saved my life and gave me some more
precious time with my family. For that, I will always be extremely thankful.
VII.
ALL THAT GLITTERS
Unfortunately there are many people
who prey on the helplessness and hopelessness that many cancer victims feel at
one time or another. While we will outline just a few, it is just a small
sampling of the “cures” we have found with many more being “sold” everyday.
This chapter is just a reminder that all that glitters is not gold. The best
source for information if you are considering anything outside the realm of the
standard cancer treatments is to talk to your doctor. I can’t emphasize that
enough. He or she will help you realize which treatments are nothing more than
fantasy. Your oncologist also should be made aware of any alternative or
complementary treatments you wish to try such as herbal. This is needed as many
herbal remedies can actually cause harm if taken with various drugs. For
example, St. John’s Wort can cause complications with anesthesia. Also remember
that there are many unlicensed clinics that provide substandard care,
intravenous infusions of various concoctions that have caused septicemia and
malnutrition. So as with all things regarding your treatment and care of your
cancer, please discuss all options over with your doctor. The role of your cancer health professional is to create an
environment of openness and trust, and to help in making informed decisions
about alternative/complementary therapies. Collaboration will improve the safe
integration of all therapies during your experience with cancer.
Distortion of perspective. Without proper perspective, people can be made to "strain
out gnats and swallow camels." Unable to tell good from bad, some people
shun "toxic" chemotherapy, but swallow cyanide (laetrile). Unable to
gauge how good a generally good thing is, they will overdose on vitamins,
essential minerals, or dietary fiber.
Unknown Source
HULDA CLARK CLINIC
Clark claims that all cancers and many
other diseases are caused by "parasites, toxins, and pollutants" and
can be cured by killing the parasites and ridding the body of environmental
chemicals. Her book The Cure for All
Cancers states:
All cancers are alike.
They are all caused by a parasite. A single parasite! It is the human
intestinal fluke. And if you kill this parasite, the cancer stops immediately.
The tissue becomes normal again. In order to get cancer; you must have this
parasite.
This parasite typically
lives in the intestine where it might do little harm, causing only colitis,
Crohn's disease or irritable bowel syndrome, or perhaps nothing at all. But if
it invades a different organ, like the uterus, kidneys or liver, it does a great
deal of harm. If it establishes itself in the liver, it causes cancer! It only
establishes itself in the liver of some people. These people have propyl
alcohol in their body. All cancer patients (100%) have both propyl alcohol and
the intestinal fluke in their livers. The solvent propyl alcohol is responsible
for letting the fluke establish itself in the liver. In order to get cancer,
you must have both the parasite and
propyl alcohol in your body [1:1-2].
FACT: None of the reports provides any
basis for concluding that Clark's treatment has the slightest value. The
majority of the people described in the 103 case reports did not have cancer.
Of those that did, most had received standard medical treatment or their tumors
were in their early stages. In these cases, Clark pronounced them cured but did
not follow what happened after they left her clinic -- so she could not
possibly know how they did afterward. In some cases, she counted patients as
cured even though she noted that they died within a few weeks after she treated
them.
ESSIAC TEA
Essiac tea is an herbal
concoction composed of Burdock, Indian Rhubarb, Sorrel, Slippery Elm and other
ingredients. It was developed by a nurse in Canada, Rene Caisse (Essiac is Caisse
spelled backward). Caisse gave the formula to a company in Canada who markets
the product today. Indian Rhubarb contains benzaldehyde, one of the components
of Amygdalin (Laetrile). Note: Not all formulas being sold today are authentic.
FACT: Several animal tests using
samples of Essiac have shown no antitumor activity. Nor did a review of data on
86 patients performed by the Canadian federal health department during the
early 1980s.
FRESH CELL THERAPY
Fresh cell therapy, also called live
cell therapy or cellular therapy, involves injections of fresh embryonic animal
cells taken from the organ or tissue that corresponds to the unhealthy organ or
tissue in the patient. Proponents claim that the recipient's body automatically
transports the injected cells to the target organ where they repair and
rejuvenate the ailing cells.
FACT: The American Cancer Society
states that fresh cell therapy has no proven benefit and has caused serious
side effects (infections and immunologic reactions to the injected protein) and
death.
GERSON
The Gerson therapy
consists of detoxification and diet. Detoxification involves the use of coffee
enemas. The theory behind this is that caffeine is rapidly absorbed through the
lower bowel and travels directly to the liver where it stimulates the production
of natural immune factors. Care must be taken not to over-stimulate the liver,
which could eventually lead to its fatigue and malfunction. The diet is similar
to the Laetrile diet but is more strict. It includes twelve or more glasses
daily of freshly pressed fruit and vegetable juices, a daily vegetable soup,
and potassium/iodine supplements. The
therapy was developed by Dr. Max Gerson, a graduate of the University of
Freiburg Medical School in Germany who fled to the U.S. in 1936 as a refugee of
fascism.
FACT:
Between 1980 and 1986 at least 13 patients treated with Gerson therapy
were admitted to San Diego area hospitals with Campylobacter fetus sepsis attributable to the liver injections.
None of the patients was cancer-free, and one died of his malignancy within a
week. Five were comatose due to low serum sodium levels, presumably as a result
of the "no sodium" Gerson dietary regimen. As a result, Gerson
personnel modified their techniques for handling raw liver products and
biologicals. However, the Gerson approach still has considerable potential for
harm. Deaths also have been attributed to the coffee enemas administered at the
Tijuana clinic.
HOXSEY
The Hoxsey treatment is an
herbal concoction composed of poke root, burdock root, barberry root, buckthorn
bark, and stillinga root. It is administered in two forms. One is taken orally
and the other is a salve (containing bloodroot) which, if the tumor is on or
close to the surface of the skin, is applied topically. Harry M. Hoxsey, a
controversial and colorful figure who said he obtained it from his grandfather,
first used the formula in 1924. The elder Hoxsey was a farmer who observed one
of his horses apparently cures itself of cancer by instinctively eating certain
plants. Many plants which animals seek when they are ill contain nitrilosides.
Amygdalin (Laetrile) is classified as a nitriloside.
FACT: Hoxsey's treatment was offered
at clinics in the United States from 1924 until repeated clashes with the FDA
led him to close his main clinic in Dallas in the late 1950s. Since 1963, it
has been available only at a clinic in Tijuana, Mexico, operated by Hoxsey's
former chief nurse, Mildred Nelson. Hoxsey himself contracted prostate cancer
in 1967 and underwent surgery after treating himself unsuccessfully with his
tonic. Most of the herbs in the tonic have been tested for antitumor activity
in cancer, with negligible results for a few and no results for the others.
Some of these herbs, most notably pokeroot, have toxic side effects. The NCI
evaluated case reports submitted by Hoxsey and concluded that no assessment was
possible because the records did not contain adequate information. Hoxsey died
in 1974. Nelson died in January 1999.
HYPEROXYGENATION THERAPY
"Hyperoxygenation" therapy
-- also called "bio-oxidative therapy" and "oxidative
therapy" -- is based on the erroneous concept that cancer is caused by
oxygen deficiency and can be cured by exposing cancer cells to more oxygen than
they can tolerate. The most touted agents are hydrogen peroxide, germanium
sesquioxide, and ozone.
FACT: Although these compounds have
been the subject of legitimate research, there is little or no evidence that
they are effective for the treatment of any serious disease, and each has
demonstrated potential for harm. Germanium products have caused irreversible
kidney damage and death. The FDA has banned their importation and seized
products from several U.S. manufacturers.
LAETRILE
Laetrile, which achieved great
notoriety during the 1970s and early 1980s, is the trade name for a synthetic
relative of amygdalin, a chemical in the kernels of apricot pits, apple seeds,
bitter almonds, and some other stone fruits and nuts. Many laetrile promoters
have called it "vitamin B17" and falsely claimed that cancer is a
vitamin deficiency disease that laetrile can cure. Claims for laetrile's
efficacy have varied considerably. First it was claimed to prevent and cure
cancer. Then it was claimed not to cure, but to "control" cancer
while giving patients an increased feeling of well being.
FACT: In response to political
pressure, the Mayo Clinic and three other U.S. cancer centers under NCI
sponsorship began a clinical trial in 1982. Laetrile and "metabolic
therapy" were administered as recommended by their promoters. The patients
had advanced cancer for which no proven treatment was known. Of 178 patients,
not one was cured or stabilized, and none had any lessening of any
cancer-related symptoms. The median survival rate was about five months from
the start of therapy. In those still alive after seven months, tumor size had
increased. Several patients experienced symptoms of cyanide toxicity or had
blood levels of cyanide approaching the lethal range.
714X
714X is a chemical solution produced in Quebec by Gaston Naessens, who also operates the International Academy of Somatidian Orthobiology. He claims that 714X can "fluidify the lymph" and "direct nitrogen into the cancerous cells in order to stop their toxic secretions which block the organisms defense system." 714X has been analyzed by the Canadian Health Protection Branch and found to contain a mixture of camphor, amonium chloride and