On Thursday, May 9, 2001 my wife, Cheri, and I sat in the office of the
hematologist I had been referred to. Two weeks earlier, after
reviewing the results of my blood work, I had been informed that there
was a possibility that I had a blood production problem. The only
way to confirm the nature of the problem was to do something called a
bone marrow biopsy. The procedure was described to me and
performed at that time. Now it was time to hear the
results. Both Cheri and I were requested to appear. Not a
good sign.
In an even tone, we were told that I had something called
myelodysplastic syndrome (MDS) and more specifically, refractory anemia
type MDS. He further stated that I had three chromosomal
abnormalities and that I was hypocellular, meaning that my bone marrow
did not have as many cells as normal. I did not have excess
immature white cells, which meant that I was not leukemic. My
doctor went on to explain that my lowered blood values found on my CBC
pointed to what the bone marrow biopsy showed definitively. At
that time my hemoglobin (hgb) was around 10.1, my white blood cells
(wbc) were 1.6 with neutrophils of about 0.5 and my platelets were in
the 130,000 range. I appreciated his frankness when he stated
that people in my situation have an average survival of three years.
The only possible cure was a bone marrow transplant (BMT) or stem cell
transplant (SCT). That, however, was a difficult procedure, we
were told. He finally suggested that since I still felt good, for
now we might want to just “watch it.” Even as the doctor spoke
these words, I knew I would be doing more than just watching it, which
sounded like waiting for the inevitable.
Cheri and I walked out of the doctor’s office. It was golf night
for our church golf league. Cheri said she couldn’t go. I
said we couldn’t not go. I knew from the start that I didn’t want
to simply crawl into a hole somewhere. The members of the golf
league soon sensed something was amiss. When they asked, we told
them. That Sunday it was publicly revealed in Sunday School
class. I asked the group to pray that we receive wisdom beyond
ourselves. I also told them that if I started to feel sorry for
myself, haul my butt down to the cancer ward of the children’s
hospital. At 54 years old, God had already been very generous by
giving us four special sons and a good life together. Cheri and I
led a Christian care and study group that generally met at our
home. Many thought we would be giving it up. We
didn’t.
The prayers and support of our family and friends were
phenomenal. I felt like I was riding the crest of waves of
prayer. Generally, I still feel that way. Some, however,
had no idea how to respond and avoided us. I understood that
also. It wasn’t that they didn’t care. It’s just that they
either were fearful of saying the wrong thing, or that they had their
own demons to deal with. Strangely, one of the most comforting
statements made to me was that perhaps this was the way God would take
me Home.
Although I had exercised regularly, I also spent too much time sucking
up cokes and not eating enough fruits and vegetables. I knew that
had to change. Nutrition, however, was not something altogether
foreign to me. My parents had led long productive lives following
a healthy lifestyle. My wife, Cheri, grew up in Korea with
traditional oriental medicine as the first line of defense.
Western medicine was the last resort. In America, of course,
alternative and nutritional approaches are most often tried after all
else has failed and/or are done half-heartedly.
We decided to immediately make significant dietary changes and
did. Cheri’s mother suggested Tahitian Noni Juice. A
friend suggested alkaline water. Both have been a part of my
routine since I started my natural and alternative therapy program
until now. But what else was out there and how could we find it???
In that regard I owe a great debt to my twin sister Janet. She
went to work while I was still spinning around a bit. She
discovered several information sources from which I could obtain info
regarding the range of conventional and alternative therapies
available. I chose two, one emphasizing conventional and one
emphasizing alternative therapies so that I could compare different
approaches. Each of these was supposedly geared to the specific
kind of cancer or condition reported. The conventional writing
came first. I learned what the word palliative meant--relieves
symptoms but doesn’t cure. I also learned that the only possibly
curative procedure was the stem cell or bone marrow transplant. I
was disappointed that the reported options were so few.
Then I received the Moss Report on MDS written by Ralph Moss PhD. See
www.cancerdecisions.com. I was overwhelmed that the options
for healing were so plentiful and also sobered by his discussion of the
SCT and BMT. In the report, Dr Moss quoted a medical textbook by
DeVita in which it was stated that it was not clear that the BMT or SCT
offered a survival advantage for the MDS patient. See DeVita, Cancer,
5th edition, 1997, p 2394. Dr. Moss highly recommended against
that procedure for an MDS patient. I was 99.9% convinced that a
SCT was something I wanted to avoid, if possible.
In keeping with my plan to search out all avenues, however, I decided
to go through with the transplant screening in July 2001.
University of Michigan hospital was the closest facility that performed
that procedure. I took the first available date for an
appointment, which was July.
At the appointed time, Cheri and I, as well as friends and family
met with the U of Michigan Hospital transplant doctors. Blood was
drawn and analyzed. Finally it was time to meet with the
doctors. A hematology fellow (a hematologist in training) met
with us first and noted that my counts had been stable for the last
couple of months (during which time I had already been using
nutritional and dietary approaches). Since I was essentially
asymptomatic, holding off on a BMT or SCT seemed appropriate to
him. We felt buoyed by our conversation with the fellow, who
encouraged us not to feel that it was necessary to rush ahead with this
procedure which he stated would “beat me up.” The fellow left the
room.
Several minutes later the attending physician entered, who was the head
of the transplant program. He advised me that if I did not get a
transplant, my likely survival was one year. Furthermore, since
my twin sister, Janet, was a match, he strongly encouraged us to
proceed with the SCT. I asked him how his view could be so much
at odds with those of the first doctor. He indicated that he saw
things that convinced him that my situation was more serious than was
previously believed by the fellow. He also said that if I
transitioned to leukemia, transplant would be less likely to succeed.
My head was spinning, but I was also angry. In the two months
since my diagnosis, I had not only carefully read the Moss Reports, but
had also reviewed actual medical articles which discussed the
predictive standards for people such as myself who had refractory
anemia with three chromosomal abnormalities, and the blood test results
I was reporting through my regular CBC’s. I knew that, according
to the tables, my Grand Rapids hematologist was correct when he stated
that the average patient in my situation would live three years.
I also knew that I was not the average patient, since MDS usually
occurs to people who are older than I am and that except for the MDS
(admittedly a rather large exception) I was healthy. Finally,
through other reading, I discovered that three years post procedure,
only about 25% of the MDS SCT or BMT patients are still alive. I
also knew that I was not ready to give up my active lifestyle unless
there was no other way.
Neither Cheri nor I had any sense of peace regarding submitting to a
SCT, even with the knowledge that Janet was a match. While it was
good to know that I had that option, in my heart I knew that the SCT
would occur only after all other options were exhausted. What
gave both Cheri and me great peace was the notion that there existed
nontoxic therapies which could hold this killer at bay. We were,
however, wrong.
Instead of merely holding MDS at bay, I have actually shown significant
improvement in my monthly blood testing as well as in terms of how I
feel. My hgb in particular has improved dramatically. Once
as low as 9.1, it has in recent months typically been in the 13-14
range. My platelets have been as low as 107,000 but over the past
several months have been around 140,000. My whites and
neutrophils, however, have been stubbornly low. The whites have
stayed about 2.0 or slightly below, and the neutrophils in the 0.5-0.6
range. Remarkably, however, in all this time I have not been
ill. Sometimes at work or at home, the flu or colds have gone
around, yet I have escaped. I do believe that I have been
protected by the prayers of others, but also suggest that the blood
work does not tell the whole story regarding the status of one’s
health. There are things going on in the body which may not be
susceptible to direct conventional measurement. Perhaps it has
something to do with what the Chinese call chi. It is my
understanding that Nicholas Gonzalez M.D., a gentleman who I admire and
respect greatly, advises his patients that blood work does not tell the
whole story. Dr. Gonzalez has had great success utilizing testing
to develop individually designed diets to balance sympathetic and
parasympathetic systems, massive enzyme supplementation, and coffee
enemas. Although I have never been treated by Dr. Gonzalez, my
approach leans heavily on what I have learned reading about his
methodology. In most cases, Dr. Gonzalez recommends a diet
including meat, poultry, and fish for those with blood related
disorders. [Link
to Dr. Gonzalez] The bottom line is that if you are following
a nontoxic nutritional approach, the side effects are all
good.
On May 8, 2004 I completed a 25 kilometer (15.6 mile) event held
annually in Grand Rapids known as the River Bank Run. My purpose
for participating in the event was to commemorate my three year
anniversary and to encourage people facing this disease or other major
challenges. The attached newspaper clipping came out a few days
before the race.
Two days after the race, Cheri and I had the opportunity to meet with
Marla in person. In hopes of providing information and
encouragement to others, Marla graciously allowed me to present my
story on her web site. Although different in some respects,
Marla’s research and that of my own led each of us in a similar
direction. It is not my intention that every person should
exactly follow my program. All I can say is that this is a
program that has worked very well for me. At the same time don’t
expect to get great results simply by dabbling. I have spoken
with people who have told me that they tried alternative stuff and it
didn’t work. When I pressed them, I was told that they had tried
herbal tea and some vitamins. That unfortunately is generally not
enough.
We are not doctors or health care professionals; we are just two people
whose plan it is to live long healthy lives and don’t see toxic
therapies as a good way to achieve that goal. Of course, each
person must use his own judgment and consult with qualified health care
professionals to arrive at treatment choices that are right for that
person.
I have developed some principles which provide my framework for
evaluating treatment options. My general strategy is:
PATIENT, HEAL THYSELF. If given the opportunity, one’s body has a
great ability to heal itself from even serious illness. The
overall strategy is to maximize the strength and energy of the
body. This promotes healing such that one’s body will be
strengthened and more able to deal with future problems. This is
done through supplying the body with the proper fuel, detoxification,
and appropriate stimulation of health generating body systems.
Self education is essential.
The tactics I have developed to employ this strategy involve
consideration of the following principles:
1. DETOXIFY. Toxins need to be removed from the body. This
is not only an initial but an ongoing process. One simply cannot
expect his body to perform as he would like if there is a bunch of junk
clogging it up.
a. Put good stuff in. Avoid the three whites. White
rice, white flour, and white sugar. Processed foods are also to
be avoided. The closer the food or supplement is to its natural
state the better. See Diet section below.
b. Get bad stuff out. Aerobic exercise is important. It not only
gets things moving inside of the body but causes you to sweat.
Sweating is one way to rid the body of toxins. I push
myself. I run. If you can’t run, do what you can. I
also bounce on a mini trampoline. I believe this gets toxins
moving throughout my system. I also take psyllium fiber, and
Jason Winters herbal tea, http://www.sirjasonwinters.com/teas.htm both
of which are intestinal cleansers. Daily coffee enemas are an
essential part of my cleansing program. The gallbladder is cleared and
the liver is stimulated to work more efficiently to cleanse the system
of toxins. Drinking adequate water or teas is also
essential to keeping things moving. See Diet section below.
2. VITAMINS, MINERALS, AND ENZYMES. The human body needs
vitamins, minerals, and enzymes. The right balance of nutrients
balances the sympathetic and parasympathetic systems. It is
generally accepted that the best way to present these to the body is in
the form of food--raw if possible. It is never sufficient to
assume that supplements alone will do the trick. Foods lose a
large percentage of their vitamins and enzymes when heated. The
importance of enzymes cannot be overemphasized. Heat and
processing destroy enzymes even more quickly than they destroy
vitamins. According to nutritionists Mary Swope PhD, David Darbro
MD and others, enzyme destruction begins at 107 degrees F and is
complete when the temperature reaches 122 degrees F. See A Cancer
Battle Plan, Frahm, 1997, at 70. The body not only receives
enzymes from outside sources, but also manufactures enzymes throughout
itself and especially in the liver and pancreas. Enzyme
supplements taken on an empty stomach are very important to overcome a
disease situation.
Coffee enemas appear to encourage the production of enzymes within the
body since it stimulates the liver which is a major manufacturer of
enzymes. In my case, coffee enemas are done on a daily
basis. Although I found it hard to believe that something as
bizarre as coffee enemas actually worked, after two years of coming
across it in my readings, I finally gave in. Much to my delight,
my blood work showed significant improvement after I began the enzyme
supplement/coffee enema approach. It is extremely important to
include supplements to replace the good bacteria and flora which are
lost through the cleansing process of the coffee enemas. I take
two Garden of Life Primal Defense tablets [Garden
of Life] morning and evening and eight Megazyme
morning and evening as well as Ultra Flora Plus by Metagenics.
I also include plain yogurt, either goat or cow.
In terms of which vitamin supplements to take, I am somewhat in a state
of flux. Historically I have taken a wide variety of
vitamins. I am, however, impressed by the arguments regarding
focusing on foods that provide these vitamins and minerals.
Nevertheless, I do take up to 10 grams per day of ester C vitamin C,
NAC, alpha lipoic acid, folic acid, CO Q10, a multivitamin and mineral
supplement, and a number of food type supplements discussed in the diet
section below.
3. EXERCISE. I consider regular aerobic exercise to be very
important. It detoxifies. It also helps to create an
alkaline environment. Exercise creates demand for oxygen, which
encourages the body to produce more red blood cells and
hemoglobin. This is according to a recent article by Ralph Moss
which also suggested that exercise is a way to avoid the need for
Procrit. CancerDecisions.com-THE
MOSS REPORTS: Newsletter (11/15/03) . CancerDecisions.com-THE
MOSS REPORTS: Newsletter (11/22/03)
4. DIET. Cars don’t run well on bad gas, and bodies don’t
function well on a poor diet. There isn’t a magic pill to restore
a person to good health. If one is used to the standard American
diet (SAD) a lifestyle change is in order.
There are certain dietary things that clearly should be avoided.
The three whites, processed foods, and alcohol are in that
category. I must confess to some imperfection in that on occasion
I still will eat a bowl of ice cream, or a piece of bread, etc.--I
allow for it. If complete perfection is the standard, I
might be too discouraged when I fall short.
There are other dietary things that should always be included in a
healthy diet. The consumption of raw fruits and veggies is also a
no-brainer for almost all of us. When cooking, steaming lightly is the
recommended approach.
Drinking at least half of a person’s body weight in ounces of alkaline
or distilled water per day is essential. I take mine in the form
of mushroom, herbal, and other teas. The mushroom tea I drink is
put together by my wife and sister in law and includes mushrooms
(reishi and chaga) and other ingredients (dried red dates, kamcho,
kugicha, chagyak, and dang gwi) from all over the world. These
are traditionally used to maintain health and fight sickness,
especially cancer.
Other parts of my diet are not so clear cut in terms of general
acceptance in the nutritional community. According to Ralph Moss,
most patients of Dr. Gonzalez who have blood disorders should include
animal and fish protein in their diets. Dr. Gonzalez goes through a
meticulous testing procedure in which he evaluates a person’s
sympathetic and parasympathetic systems and prescribes a diet and
supplement schedule accordingly. I include meat and poultry (preferably
organic and pasture fed) in my diet. I also drink raw milk.
The pasteurization and homogenization processes are very hard on milk
nutritionally. Non farm salt water fish is also something I
consume. I try to avoid fresh water fish because of the higher
risk of contamination. Raw, unfiltered, cold processed honey is
actually alkaline producing, and contains important enzymes. Royal
jelly, bee pollen, and propolis are also excellent. I also take
red ginseng, black sesame, and apricot kernels (amygdalin). Only
a few apricot kernels per day should be consumed, however. Udo’s Choice
is an excellent blend of flax and other healthful oils that I have
taken from the beginning. In the morning I consume a vegetable
juice blend using a Vita Mix blender. I generally use Jason
Winters tea and green tea (using alkaline water, of course) and include
a variety of vegetables, tomato paste, powdered shiitake mushroom,
seaweed, powdered ester C, and Green Magma barley grass.
Cheri has also put together capsules of raw foods she has dried and
ground up. These include barley, dandelion tops, dandelion roots,
pine needles, black beans, grape seed, dang kwi and brown rice.
Kyolic aged garlic formula #102, is very highly thought of and
something I use daily. I also drink Tahitian Noni Juice.
For snacks I eat raw veggies and nuts. Organic, of course, is
best.
According to my reading, there is also an order in which food should be
eaten. Fruit should be eaten alone and on an empty stomach.
Vegetables can be eaten with meat or with starch, but the three should
not be consumed together (sometimes easier said than done).
5. ALKALINITY. Cancer and other adult onset diseases do not
thrive in an alkaline and oxygen rich environment and are encouraged in
an acidic environment. Some foods promote an alkaline environment
and some promote an acidic one. Most fruits and raw vegetables
are alkaline producing. Some things which are acidic, however,
may be a necessary part of a diet. The body in fact is very
skilled at maintaining the pH of different organs within tight
parameters. Some organs, such as the stomach and skin maintain
acidic pH’s consistent with it’s designed function. According to
Weston Price, some of the healthiest peoples on earth had a diet that
would be considered acidic forming. I consume meat, fish, dairy,
and chicken. This makes it all the more important to consume
large amounts of fresh fruits and veggies, which are generally
alkaline. All this having been said, however, my thought is
that it is better to err on the alkaline side. Accordingly, I brew and
drink large amounts of herb teas, mushroom teas, green tea etc. which
are all brewed in alkaline water using an Alkalizer machine which
separates source water into alkaline and acidic components. An
interesting discussion regarding alkalinity and health is found at the Price-Pottenger
Foundation .
6. EDUCATION. I listened carefully to the suggestions of
qualified health professionals. Then I did my own research.
I continue to read and learn. I can afford to be less critical of
something that won’t hurt me. I am more critical of a product
that is recommended by a person who wants to sell it to me. I
don’t assume that my best information can only come from a highly
degreed person. Some of the best suggestions I have received have
come from experience-rich non-degreed individuals who have information
that makes sense according to the principles presented above. I
especially value the positive experiences of fellow travelers on the
blood disease road. I keep track of my tests and continually
evaluate my healing modalities on an ongoing basis. I try to be
open-minded, since the best answer to my situation might be outside of
the box. I try to listen and be sensitive to what my body is
telling me. I never assume that I have arrived. There is
always something to learn.
7. RELIGIOUS FAITH. My Christian beliefs have been a source of
great strength and comfort as I face the uncertainties of a potentially
fatal illness. God has given me a peace beyond myself. I
believe that I’m in a win-win situation.
During my conversation with Marla in May 2004, I asked her how she is
facing the future. Marla seemed to be surprised that I was even
asking such a question. She stated to me that she has every
intention to live a long and productive life and is planning
accordingly. That answer matches my feeling exactly.
Nevertheless, both Marla and I fully understand that it is God who will
make the final decision. God has, however, given each of us the
tools to remedy the problems of life. He expects us to use those
tools.
If you have any further questions or comments, please email me at hessnhess@aol.com.
