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Blogs
from Germany |
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| Why
Germany? |
| June 24, 2006 |
Why am I in Germany receiving immunotherapy
treatments? Why do many health care experts say Germany and surrounding
countries offer the most innovative cancer therapies in the world?
I’ve wondered about the source of this innovation around
cancer care since I started doing research into European cancer
clinics, and I’m just now starting to piece together some
answers.
In Germany, there is a long tradition dating back to the 1800s
of legally recognized specialties in medicine such as homeopathy
and anthropological medicine being part of mainstream health care.
The German medical system offers patients a range of therapeutic
modalities as a part of standard care, including many modalities
that are considered unconventional in the United States. Germans
do not possess the same skepticism that exists in the United States
about what many Americans label alternative therapies.
The public attitude in German about health care is also reflected
in German law that allows the individual practice of medicine.
Today’s German constitution refers to the individual as
an independent entity. German law supports this independence by
providing doctors with special freedoms of therapy as long as
the treatments are in the best interest of the patient. Switzerland
has some similar laws.
In mainstream medicine, individual therapy is generally not practiced
in the United States for many reasons, some of which include how
pharmaceutical companies approach cancer drug development, the
traditionally accepted clinical trials paradigm, and how the Food
and Drug Administration approves new therapies. Some cancer clinics
in Europe offer therapies are customized to each patient. Since
individuals are unique, why not create a treatment plan specific
to their internal strengths and weaknesses?
As I’ve met Germans since my arrival over three weeks ago,
I have shared why I’ll be living in Cologne for six months.
“What, you came here for cancer treatments? Our perception
is that the United States has the best of everything,” has
been the response. I wish that were the truth. I wish the U.S.
health care system offered a person-centered system of medicine.
I wish the U.S. offered some of the treatments available abroad
to those not willing or able to travel for medical care.
Current U.S. statistics indicate that one in two men and one
in three women will be diagnosed with cancer in their lifetime.
With incidence rates increasing and survival rates generally not
improving, we need better cancer therapies available to everyone.
We need to do more now. Cancer care in the United States is in
dire need of novel approaches. Those in the cancer care development
and delivery system need to think and work outside the current
paradigm. The value of human life is too high. People are dying.
People have died. Some survivors, including family members and
other loved ones, lead shattered lives in the aftermath of loss.
“Do no harm,” said Hippocrates, the founder of medicine,
in the 4th Century B.C. How can modern cancer care provide more
effective therapies and do less harm in the process? That is the
billion-dollar question. And yet, some of the answers might already
exist. Perhaps the largest barrier is the willingness to think
outside the box. |
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| 11 Million Dendritic
Cells |
| June 22, 2006 |
On June 20th, 11 million dendritic
cells cultured in a laboratory over 7 days from my monocytes were
given to my amazing 5 feet by 10 inch frame. Looking at my dendritic
cells in a tiny tube, I felt awe for the sophistication of the
treatment. Sixty percent of the dendritic cells were administered
intravenously, and fourty percent subcutaneously into each side
of my upper arm below my shoulder. The dendritic cell vaccine
contained interferon alpha and gamma to help create an immune
response. The injections caused some minor and temporary discomfort,
but no significant pain. |
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| Flu like symptoms are somewhat
expected and desirable about 2 to 4 hours after the vaccine’s
administration. The symptoms are a sign of the body’s
responsiveness to the vaccine, and its potential efficacy.
On my walk home from the clinic, I noticed brief moments of
aches in my head, sensation around the tumor site, and some
general fatigue throughout my body. As my brain tumor vaccine
moved into action, Germany played in the World Cup. The bars
and restaurants along the main street in downtown Cologne
were packed with enthusiastic fans focused on large screen
televisions as if nothing else in the world mattered. I momentarily
wished I could be so carefree watching from the outskirts
of the crowd. |
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| Arriving back at my flat, I rested
on my couch visualizing the vaccine finding the tumor cells.
Remembering the health benefits from the immune system working
unsupervised, I watched Walk the Line on DVD. I thoroughly
enjoyed this brilliant Academy Award winning film, and yet
didn’t know of the heart-wrenching plot. Next time I
might follow the lead of Norman Cousins and rent a comedy!
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| Vacillating my attention between the
television and sensations in my body, I shed a few tears as I experienced
severe headaches and aches in all parts of my body. About 5 hours
after the vaccine’s administration, I noted that my body felt
cold. My temperature checked in at 100.4 degrees Fahrenheit. With
excitement for my fever, I rested in bed and quickly fell asleep.
However, World Cup fans screaming in the streets and playing soccer
outside of my apartment building woke me at midnight. I grabbed
my thermometer and my fever had increased to 101.9 degrees! |
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| Waking again several hours later, my
temperature had decreased to below 100 degrees. The flu like symptoms
are most often short term. In the morning, I felt some fatigue,
and my body temperature was slightly elevated at 99.4 degrees. By
evening, my temperature returned to normal. I was physically fatigued
throughout the day and with some headaches, some of which is typical
in the aftermath of a fever. |
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| I’ll receive my second vaccine
next month. The immune system needs education or re-education over
time, and therefore a series of vaccines versus a single vaccine
offers more potential for therapeutic efficacy through immune activation.
Until then, and in the midst of my other treatments, my healing
journey requires me to trust. For the last eight years, I’ve
tried to balance my diligent attention toward my health with surrendering
to a higher power and a higher process. And now, I must find a way
to let go. |
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| Biking Through the Weekend
Blues |
| June 18, 2006 |
Tiredness has overcome me the last
several days around mid-afternoon. Since I’m in Cologne
to heal, the needs of my body are paramount, so when I’m
tired, I sleep. This afternoon, with exhaustion lingering in the
immediate horizon, I knew I had to act quickly. Instead of sleeping,
I wanted to actualize my plan of going for a bicycle ride along
the Rhine. I haven’t been exercising enough since arriving
in Cologne, and because physical activity is also medicine for
my body and soul, I decided to try biking over sleep. Knowing
I could always just return home for a nap if I felt too tired
once on the road, I filled my water bottles, packed my bag, and
headed outside.
As I approached the Rhine, I noticed a layer of depression in
my tiredness. Depression is a tricky label though. I knew I felt
lonely. I hadn’t made any social plans for the weekend so
I could spend time by myself, which seems to inevitably lead me
to some degree of loneliness. And yet, since my healing encompasses
coming more fully into myself and my wholeness, I feel a strong
need to explore the loneliness, befriend it, and hopefully integrate
what lies inside of that surface angst.
My thoughts, via my mind, weren’t providing any comfort.
I began feeling more and more alone. My vision became slightly
fogged as my eyes began to water. And then, as if right on cue,
I heard Irish music. I maneuvered my way across the street a half
block later and rode onto a dirt path.
I entered an enchanted forest. Sounds from various directions
bounced off the lush green trees, bushes, gray rock walls, people,
and the sky. After locking my bike to a tree, I wandered toward
the tunes. Peering down into a forest alcove lined with ancient
stones, I observed and listened to the creation of a jazzy trumpet
melody. Exploring further, I walked through a grassy field and
watched a band of accordion players jamming together in song.
Back into the dense forest, I strolled past wooden booths selling
cotton candy, watermelon, and freshly cooked paella sizzling in
a 4 feet by 4 feet circular metal pan. I admired a stage surrounded
by a wooden ship filled with children telling some type of story
in their distinctive German tongues. With a clear hint of joy
emerging inside of me, I then heard full-blown, ecstatic, electric
Irish music.
Stone steps created the path toward the stage framed by a tree
trunk and its surrounding 30 feet braches with golden green leaves
reaching out toward the afternoon sun. Three men each played violins
for an audience of over 400 eyes, some staring at the musicians
with enchantment, and others closed yet moving to an internal
rhythm. Absorbing their tunes, I felt my cells shift and almost
explode in every direction. Energy moved through my legs, and
my feet chakras blossomed like tightly held buds opening to display
their beauty. The violin group played three more songs, and I
experienced more and more delight.
Feeling content, I left the enchanted forest and continued south
along the Rhine, but only to begin feeling blue again. “Why
do the emotions shift so dramatically?” I wondered. I sat
with my melancholy and then released it to the universe as I biked
past little towns, harbors for small boat, as well as bars directly
off the Rhine’s path.
Miles later, for reasons I cannot precisely define, I realized
I no longer felt alone. Everyone was with me, including my nephew,
niece, brother, sister-in-law, parents, grandparents, friends,
along with each person that has ever expressed love in my direction.
My interconnectedness sustained itself, and I felt my attachment
to containing that mindset in my being. I then wished it upon
myself. I wished for interconnectedness, wholeness, inner peace,
acceptance, and love. I wished these things for all people. Reversing
my course north in the direction of Cologne, I peered at the glimmering
surface of the Rhine, and wished away into the early evening light.
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| Launching into Treatments |
| June 16, 2006 |
Arriving at the Medical Center of
Cologne (MCC), I met with Robert Gorter, MD, PhD, to discuss my
treatment plan in more detail. My June 12th appointment wasn’t
my first time at MCC. I spent a few days in Cologne this past
January to interview Dr. Gorter about his protocol and perform
a site visit of his clinic.
Dr. Gorter outlined my treatment plan. During month one, I will
receive localized hyperthermia to the head along with infusions
on Tuesdays and Fridays. My dendritic cell vaccine will be administered
with interferon alpha and interferon gamma once monthly. In addition,
I’ll begin the Newcastle disease virus during month two.
And, a few other therapies will be added according to the results
of my immune status testing.
Dr. Gorter had just returned from the American Society of Clinical
Oncology’s annual meeting, and he noted a paradigm shift
within conventional oncology in relation to immunotherapy treatments
over the last five years. He said the attitude is no longer if,
but who, how, and what. His report made me feel like we are on
the cutting-edge.
Reporting to the clinic on Tuesday morning, I had several vials
of blood drawn for the dendritic cell vaccine and immune status
testing. A clinic physician from Mexico, Eloy Pulido, MD, performed
the blood draw and programmed the hyperthermia device. He speaks
English, and we spoke some Spanish, too.
After the blood draw, my first treatment
with localized hyperthermia and infusions began as I rested
on a bed of salt water that creates an electromagnetic field.
The hyperthermia device, compromised of water and electromagnetic
substances, was pressed directly over the left side of my head.
The device became hot within a few minutes of its application.
During the first week, the temperature index is adjusted to between
70 and 80 percent of full capacity to allow an acclimation process. |
During the treatment, my head warmed, followed by increased heat
throughout my entire body, a subsequent sweat, and also a slight
elevation in my heart rate. Dr. Pulido said all of my reactions
were normal, and therefore I wasn’t alarmed and even meditated
during parts of the procedure. I was dizzy for less than two minutes
after the procedure, but Dr. Pulido again said that was common.
Leaving the clinic, I was slightly fatigued and nauseous.
A German nurse administered my second
hyperthermia treatment on Friday. She doesn’t speak
English. Feeling the heat once again, I appreciate the added benefit
of sweating away toxins during hyperthermia. New observations
included a funky taste in my mouth at the treatment’s end,
which Dr. Pulido said was associated with the infusions. The more
interesting observation for me was that the glands in my neck
became swollen about 25 minutes into the treatment and my nose
stuffed up. My theory is that the hyperthermia stimulated an immune
response in my system, and my swollen glands and stuffy noise
were evidence of that. When I told Dr. Pulido, he explained the
literature does not cite such a side effect from hyperthermia,
and that no other patient had reported a similar reaction. Since
I have the good fortune of being highly sensitive, I assured him
I might report effects from the treatments that he had not previously
heard.
My first week of treatments also included a baseline
MRI scan. My last MRI was in early January, so I was due
for one anyway. I’ve been fairly nervous for the ritual
MRI scans over the last eight years. This time around, I wasn’t.
My new environment in Germany, combined with the fact that I am
receiving more aggressive treatments for the tumor, provided both
a distraction and degree of peace in relation to my scan.
I met with the radiologist, which I had never actually done before
a scan. Feeling tremendous intrigue about the German medical system,
I inquired with the radiologist if he usually met with patients
before their scans. He explained that for some scans he doesn’t
meet with patients, but for more complicated ailments, he prefers
to collect information so he can know what to look for. Sharing
my appreciation for their system, the radiologist emphasized that
information can become lost in between practitioners, and when
everyone communicates together, there is more potential for clarity
and accuracy. For those of you who know the story of my recurrence,
I know this all too well.
Examining the images with the radiologist and Dr. Gorter five
minutes after finishing the MRI, we all noted the tumor in my
left temporal lobe whose measurements appeared comparable to my
last few scans. In addition, the radiologist pointed to a line
on the film through part of the tumor. He explained that my tumor
wrapped around a large artery and emphasized the artery would
make a complete surgical resection virtually impossible, and the
procedure itself more dangerous and risky. Interestingly, none
of my doctors had mentioned the artery to me before, although
I had certainly seen the line next to my tumor on my previous
MRI scans. Most importantly, we have a baseline from which to
track the results of the immunotherapy treatments. I’ll
have my next scan in five months. |
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| Settling into my New
Base |
| June 11, 2006 |
| My transition has gone very
smoothly so far. I found a flat through a housing agency on my first
full day in Cologne, worked for two of my clients over the past
week, found groceries, explored the city and some local resources,
visited with a friend I met here in January, made some new connections,
and even purchased a bike. I’ll use my bike as transportation
within the city as many people do in Cologne, and for exercise as
well. Today, I went for a three-hour bike ride along the Rhine River
and basked in the sunshine. I’m hyped for my first appointment
tomorrow at the clinic. I’m ready to launch! |
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| Departure |
| May 31, 2006 |
“Turn off your cell phones.
The cabin doors are closed. Everyone must turn off their cell
phones,” announced a flight attendant. “We are about
to depart.”
Picking up my cell phone from the empty seat next to me, I pressed
the off button. I smiled looking out the window. Closing my eyes,
I could feel the quiet. Every ounce of my being assured me that
I was meant to be a solo traveler. A voice inside of me calmly
stated, “Your healing demands a depth of internal presence
that can only be achieved alone.”
I have been meandering for almost a decade, sometimes with and
in other moments without direction, toward a destination that
I couldn’t exactly define. Many guideposts, including signs,
signals, voices, and people, have shown me the way.
And I must now find guidance within myself. That doesn’t
mean I will not have the occasional consultant. However, my healing
must come from the inside out. For me, there is no other way. |
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