Washington,
D.C.
One morning, in 1983, I woke up unable to swallow. By the
end of the day I could not even swallow water. My fiancée
Jeff and my mother had to jointly “drag” me to
the hospital emergency room because I kept saying nothing
was wrong. Jeff replied, “Then why can’t you swallow?”
And I said, “Oh, for heavens sake, something small is
stuck in my esophagus and I’m sure it will pop out.”
It didn’t pop out.
They admitted me to the emergency room of the local hospital,
and by the next day they had scheduled surgery. I awoke in
Intensive Care to a nightmare. I was lying on a table and
nine hours had lapsed. Nine hours? Nine hours for just a little
something stuck in my throat? What went wrong?
I felt cold and then the pain began to wash over me. I looked
down at my body and saw huge metal staples covering my torso.
The staples appeared to be holding me together. Inch-wide
incisions ran the entire circumference of my body –
somewhat like a peach that had been sliced in half and opened
up. Another incision ran from my sternum to my naval. An incision
ran down the side of my nose and a tube had been inserted
and sewed to the skin. Two large tubes ran into my side and
they also were attached to the skin. I was too frightened
to speak.
The surgeon appeared and said, “I’m sorry.”
I said, “About what?” He replied, “About
the cancer.” “What cancer?” “You have
stomach and esophageal cancer and we have removed your distal
esophagus, stomach, rib cage, and diaphragm portions.”
I couldn’t think of a thing to say.
My brother Philip came in and calmly took my hand. I hadn’t
seen my brother cry since we were children. That’s when
I “borrowed” his Zorro cape to use as a tablecloth
for my doll and in the process ruined it.
I was diagnosed with stomach and esophageal cancer. I was
the youngest person ever diagnosed with this type of cancer.
The survival rate was less than 2%.
How could I be dying of cancer? I was young, healthy, and
very athletic. I had never smoked a cigarette, didn’t
drink anything other than an occasional glass of wine, jogged
every day, and perhaps more importantly, had no history of
cancer in my family.
In college, years earlier, I received a scholarship in Environmental
Chemistry and Engineering from the Environmental Protection
Agency. This scholarship included working on EPA contracts
in an environmental research laboratory. The longest research
project I worked on was a toxic guidelines study of polychlorinated
byphenols (PCBs). Every day for two years, I condensed samples
to extract PCBs from them. Following the two-year study, the
EPA banned PCBs from the market labeling them as carcinogens.
I had breathed PCBs every day for two years.
The pain was relentless and agonizing. I didn’t know
that a human could survive such pain. It took every ounce
of strength left in my body to get through the day. I was
receiving morphine shots in my legs every two hours, twenty-four
hours a day. I was still begging for more. This went on for
thirty-two days. I could not even have a sip of water during
this time. My mouth and lips craved the sensation of liquid.
Hunger, pain, and thirst were my constant companions. It was
difficult to think of anything else.
After over a month of this torment, the doctors came into
my room to announce it was time to test the new system they
had constructed inside me. They took me downstairs to “test
the new system.” I felt horrible and dehumanized. I
looked like a Frankenstein monster. Visitors in the hospital
elevator and hall were staring at me.
They had given me an extra morphine shot so they could hang
me upside down like a bat and take pictures of the “new
setup.” My "new setup" was designed to replace
my regular organs. I made the mistake of asking the technician
what would happen if this “new setup” didn’t
work as planned. He said, “Well, you will die.”
I was impressed with his subtlety.
The surgeon appeared all aglow and said, “How about
that! Everything works fine. You are really a strong girl.”
I squeaked out, “Now what?” He said, “You
go home.”
“But I can’t eat.”
“I know.”
“What will I do, how will I live without food?”
“Try to sip a teaspoon of soup once an hour.”
“Can I live on that?”
“Most people do not survive this disease past six months.”
“The cancer?”
“Yes. The survival rate is less than 2%.”
“How will I die, will it be painful?”
“I have to go now, I have other patients to see.”
My family (Mom, Dad, two sisters, and a brother) came to see
me daily. They just sat there looking at me or trying not
to look at me.
There were two people, however, I could not allow to see me
in this condition: my daughter and my fiancée. I married
at age eighteen when I had not one brain cell working. The
idiot child-bride (me) gave birth to an adorable, precious
daughter. I made my mother promise not to let my beloved daughter
Octavia see me or know how sick I was.
I did not let my fiancée, Jeff, see me the entire time
I was in the hospital because I could not bear to see the
look on his face. I had been a beautiful young woman, full
of laughter and health with a life to look forward to.
On the last day of my hospital stay, the nurse said to me,
“Well, you are going to have to let Jeff in here now,
because he will see you being wheeled out of here. Don’t
you want to let him in now? He’s been sleeping on a
gurney outside this room for thirty-two days. He doesn’t
leave. He eats BLT sandwiches all day. All the nurses chat
with him. They like him. Let him in.”
“OK, but not until my sisters come in here and fix me
up. I know I weigh 78 pounds and I am 5’6” which
isn’t the most attractive state of affairs, but they
are really good with makeup.”
So, my sisters Macrae and Elizabeth brought their makeup kits
and went to work. They even fixed my hair with lovely barrettes
and stuck a sexy negligee over the stick-body. They went out
to get Jeff, who was perched in his usual place, on a gurney
in the hallway right outside my room. He came in and they
went out.
Jeff came over to the bed and said, “Hi. Can I get in?”
Pretending everything was normal, he carefully got into the
hospital bed with me, put his arms around me, and proceeded
to talk about his cousin’s escapades, getting me a dog
and the pretty new sheets he had bought for me to come home
to.
I thought to myself, “Is he crazy? Can’t he see
what’s going on here?” So I said, “Do you
want a corpse for a bride?” He ignored me and said,
“Let’s go home now.” So we went home. I
was glad he took me home with him because even though I love
my parents dearly, the thought of smelling my father’s
scrapple every morning (he never varies his choice) made my
head throb.
After I had been home for a few weeks, Aran (my young nephew)
asked me why I looked like a preying mantis. I realized that
I had to do something. I couldn’t eat, and I didn’t
want to end up as another statistic. I wanted to be included
in the 2% of stomach/esophageal cancer patients that manage
to somehow survive. There really were only two choices: lie
there and die or fight.
I made a pact with God, Jesus and the Universe (just to cover
all bases). If "They" would let me live, I would
reciprocate by working with cancer patients. I promised to
discover "things" which would alleviate the suffering
of humankind. I didn't even know what "things" I
was talking about, but I made the promise anyway. Please God,
either let me die now or let me live with dignity and without
pain.
With survival as my motivator, I solicited everyone to bring
me medical books. The bed was covered with medical books and
research papers. I became obsessed. It was like the story
"Lorenzo's Oil" only the patient and researcher
were one and the same.
For some unknown reason, I could understand and process all
the scientific and medical data at terrific speed and with
total comprehension. This was baffling to me because as a
dyslexic, processing technical information can be a challenge.
I requested more and more advanced books and research. I couldn't
get enough. Complicated scientific concepts became simple
to me. Many of the chemistry books I read were authored by
Linus Pauling.
I decided to call Dr. Linus Pauling at the Linus Pauling Institute
in California. Well, why not? He was the most brilliant human
alive. Two Nobel prizes are credentials enough for me. I had
devoured his books and research on vitamin C and cancer. I
called the Institute and they connected me to him. He spoke
with me at length and was extremely patient and kind. Dr.
Pauling and I talked about the less than 2% chance of survival,
and we discussed his research on vitamin C and antioxidants.
Dr. Pauling recommended a protocol of antioxidants, vitamin
C, and amino acids.
At that time, there was nothing in the literature that mentioned
using the amino acid L-arginine as an immune system stimulant,
but I had nothing to lose and made the decision to take very
large doses of L-arginine, vitamin C, bioflavonoids, and antioxidants.
My father arranged to have me evaluated at the Lombardi Cancer
Center, Georgetown University Hospital. Following the evaluation,
three oncologists met with me and my family. They had examined
my case carefully and had concluded that I could not have
chemotherapy and I could not have radiation.
You cannot radiate the heart, and my new stomach was right
up against my heart. They felt chemotherapy would only make
me lose more weight, and in reality, I had no more weight
to donate. "So, what's the plan?" I cheerfully inquired.
"We don't have a plan." They were kind, but blunt.
My mother looked frantic. On the way home from the hospital
she said, "Remember that red striped dress I made you
wear to a party when you were fifteen?" How could I forget?
I looked like a decorated flag pole. "Well," she
continued, "I'm really sorry. Will you forgive me?"
That scared me more than anything the doctors had said.
I pled my case to Dr. Woolley at Georgetown University Hospital
in Washington, D.C.; let me follow the Linus Pauling Protocol
and take L-arginine and other nutrients. He agreed, with the
stipulation that they would monitor my progress and continually
test for clinical signs of overdosing. At my low weight, nutrient
megadoses had toxic potential.
I began the protocol with the assistance and direction of
Linus Pauling and Dr. Evan Cameron, his associate at the Pauling
Institute. Dr. Cameron's Scottish brogue was both soothing
and fascinating.
Georgetown Hospital decided to try hypnosis as an alternative
treatment to chemotherapy and radiation. My mind and body
were so traumatized that they felt hypnosis might help. The
hypnosis was to serve two purposes. One was to deal with the
remaining cancer cells left following the surgery. They were
not able to remove all the cancer, and without the possibility
of any further treatment to eradicate these aggressive cells,
they could continue to spread. Under deep hypnosis Dr. Molly
Jones had me visualize Pac-Man-like creatures eating up the
remaining cancer. I spent countless waking and dreaming hours
sending cartoon figures into battle to attack and destroy
the cancer cells. Two, Dr. Jones felt that something was preventing
me from enjoying food.
During the intense hypnosis sessions, Dr. Jones discovered
that my subconscious mind believed food would get stuck in
my esophagus and I would choke to death if I ate something
solid. I was, in fact, afraid of food.
Dr. Jones gradually removed this misconception, and I eventually
began to eat tiny bits of food. Though I could not eat normal
food for two years, I could sip liquid and eat soup, Jello
and Italian ice at the rate of 1 teaspoon per hour. I got
so tired of this regimen and of being hungry that I would
dream of consuming huge Thanksgiving dinners. I thought about
fried chicken a lot.
Dr. Jones would hypnotize me and then she and I would prepare
"pretend" meals involving wonderful food. In my
mind I would eat and eat. It was like watching Emeril on the
Food Channel, wherein you don't really eat the food, but you
surely enjoy the process. When she brought me out of the hypnosis,
I would feel less intimidated by the thought of eating.
As soon as the session was over, Jeff and my mother and sister
would rush me to a nearby cafe and coax me to take a bite
of something. The whole process was really absurd, and I'm
sure people at the other lunch tables thought I was anorexic.
But after all the trouble everyone had gone to, I knew I should
take a few bites.
I
kept thinking about a book I had read about bizarre phobias.
One man had a "fear of purchase" and could not bring
himself to buy anything. Another case involved a woman who
had an abject fear of donkeys. If she saw one, or even a picture
of one, she would run screaming bloody murder. Fear of food
put me in the same category, so I tried to eat.
Because of the new stomach-setup, eating was not pleasant.
It was painful and weird. The food went in the mouth, but
then it took a different path from the normal route, and went...Lord
knows where. I didn't want to know and didn't ask. If the
doctors tried to explain it to me, my mind would go "La,
la, la, I don't hear you." Years later, I would read
my entire medical files, and recoil in horror.
Aside from the food issue, the position issue loomed large.
The doctors had told me I would never be able to lie flat
again and had to sleep sitting up. Jeff had placed blocks
under my bed, but I kept sliding out. The bed resembled a
ski slope. We eventually made a better setup using huge pillows,
which were certainly more comfortable than blocks. The problem
was, when I fell into deep sleep, I would slide down, and
end up lying flat. Acid from my stomach would then creep into
my throat and mouth and burn like fire. They had removed the
distal esophagus and sphincter, which keeps acids contained
in the stomach.
This particular problem had no solution other than drugs to
suppress the acid or stay in an upright position all the time.
We tried the drugs, but for some reason, they made my head
jerk, somewhat like the Exorcist, and at odd times. Naturally,
we were out in public the first time it happened, at a movie,
and you can imagine the remarks from the people sitting behind
us. So much for the drugs. I decided it would be better to
sleep sitting up than have my head go off like a rocket at
inopportune moments.
I continued daily to drink the concoctions I had made from
L-arginine, vitamin C, and antioxidants. Gradually I began
to improve and to eat small amounts of food throughout the
day. Eventually I could eat enough to feel full. Though I
will never be able to eat large or even normal amounts of
food at one time, I can eat enough during a 24 hour period
to stay alive and healthy. Fried chicken is now on my permanent
menu.
The person that went into the hospital was not the same person
who came out. I don't know what happened, but some miracle
occurred.
Having this gift has not made me arrogant, it has made me
humble. I have not abused or wasted this gift. I make the
most of every day and continue to thank God and the Universe
for letting me live to create products, formulas, and patents
that help mankind.
I am now happily married to Jeff. Octavia is a beautiful and
brilliant young lady in college studying Environmental Law
and Policy. I am healthy and free of cancer. And I have kept
my promise.
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