The death of my wonderful life partner Kathleen
Alden Smick seemed more painful and disorganized than
it could have been. (My
Experience with Cancer)Her inflammatory breast cancer (IBC) seemed so relentless. In
hindsight, there were more options and resources
than we realized. I've collected these notes and resource links
in an attempt to
learn the lessons, and honor her wish that other people benefit from her
experience. Since there is so much info on conventional
treatment, these notes lean towards some pieces of info that we did not
hear, but I wish we did.
While we knew there was debate outside conventional medicine about
treatment strategies, it wasn't until Kathleen died that I started
hearing about the active debates within the conventional medical
within the scientific community, and the evidence of a link between
diet and cancer. It wasn't until after she died that her oncologist
told me that he knew a year in advance that she'd likely be dead in a
year, but didn't want to tell her/us. It wasn't until after she died
that her oncologist
told me that there haven't been any significant advances in the
treatment of breast cancer in the last 20 years, only diagnostic
advances. It wasn't until after she died that I started hearing
compelling statistics about the lack of effectiveness of
surgery+chemo+radiation for most forms of cancers. It wasn't until
after her death that I heard that in many other scientifically-advanced
countries chemo and radiation are used much less than in the US, for
same conditions, and based on the same scientific studies. It wasn't
until after her death that I started seeing significant evidence that
diet may be able to both prevent and cure common cancers, including
I hope other people can explore more options before they get lost in
the details and daze of one treatment path. The three key
emotional windows of
opportunity seem to be: the post-diagnosis pre-treatment period; the
post-treatment pre-recurrence period; and then the "you've only got __
months to live" period. While hope is certainly a great thing,
broad & correct information is even better. People are
literally betting their life on their chosen path. Once the
mental fog of chemo, pain medication, and fatigue set in, it is even
harder to make a rational bet, or reaasses the progress and change your
Proceed with diagnostic tests, but wait to start treatment.
Invest at least a month in gathering info, diverse medical opinions,
and talking to patients farther along the path. Get multiple
overviews of treatment options. While doing that, try a diet-based
approach. (Examples include: John McDougall, M.D., www.drmcdougall.com; Gerson
the end of the month,
repeat the diagnostics. Assess options based on info gathered and
updated test results. Some cancers have been in the body for many
years. An extra month or two may not change the eventual outcome.
Repeating the diagnostics at the end of the
month, would provide some info on the rate of progression, or
tempting to grab a specific solution right away, getting an
overview of your options may actually save you from wasting time on
tangents, and increases your
odds of picking the right treatments. There is so much information on
the web, so many books, so many studies supporting every perspective,
unclear what to believe. Family, friends, or paid researchers can
help find and
info. Ask for this help at key decision times.
During this assessment time, improving diet and exercise has little
downside, and a number of
positives: 1) Health promoting in general, whether or not you
pursue conventional treatments. 2) Strengthening likely to help you
handle treatments. 3) Stress reducing. 4) Possibly
curative. (Reminder: The leading causes of death in US women are
heart disease, followed by cancer, followed by stroke. http://www.cdc.gov/Women/lcod.htm, and that all three appear to be correlated to intake of animal fat.)
Ways to get info early and in a hurry
These resources are a way to get an overview of options with minimal
time investment. A person could potentially watch all these
documentaries in a day, and be armed with some good questions.
"Choice in Cancer" by Michael Lerner, Ph.D.
Video. A very thoughtful overview of options. Highly
recommended as a place to start. In general favors conventional
treatments, but mentions the active debate about their effectiveness,
and speaks favorably about some alternative treatments. Interesting
suggestion to compare of the relatively aggresive treatments in the US
versus less aggresive treatments in Great Britain, Germany, and France,
when all those countries have access to the same science and studies.
Good suggestions about choices in pain control and dying, that I hadn't
before. Publisher's description: "Choices in Cancer is
intended to enable people with cancer and
those who care for them to map the kinds of choices they may face,
including: (1) choice in healing; (2) choice in conventional therapies;
(3) choice in complementary therapies; (4) choice in pain control; and
(5) choice in death and dying. This videotape is a synthesis of the
presentations that Michael Lerner. Ph.D., President of Commonweal,
gives for participants during the Commonweal Cancer Help
I have a couple extra copies to loan out locally.
Commonweal Cancer Help Program "...a week-long
retreat for people with cancer. Our goal is to help
participants live better and, where possible, longer lives. The Cancer
Help Program addresses the unmet needs of people with cancer. These
include finding balanced information on choices in healing, mainstream
and complementary therapies; exploring emotional and spiritual
dimensions of cancer; discovering that illness can sometimes lead to a
richer and fuller life; and experiencing genuine community with others
facing a cancer diagnosis." (www.commonweal.org/programs/cancer-help.html)
THE TRUTH ABOUT CANCER, PBS APRIL 16, 2008 Emmy
Award-Winning Filmmaker Linda Garmon Takes on the Question "How Far
Have We Come in the War on Cancer?" Sample of sobering
doctor's quotes from the film: "For patients, once the cancer has
spread distantly through the body, the outcomes can be really grim.
Less than one patient out of ten would survive five years for most of
the common cancers once they've already spread. So where are we
with cancer? I think it has been you know cancer nine, us one. ... The
success rate for putting a drug into a human and then having an FDA
approved drug some time later is no better than 1 out of 10. So 1 out
of 10, 9 drugs fail for every 10, that goes into clinical testing in
people, so not a great track record." -- George Demetri;
"... metastatic disease - they've spread; lots of these
things are relatively untreatable. There's no chemotherapy that works
in these tumors. And modern cancer care never discusses the fact that
you don't win very often." -- Chris Fletcher; "... Lance
Armstrong had, you know, won the lottery, essentially. He had the
world's most sensitive cancer to chemotherapy that we know - testicular
cancer - and his melted like butter; it had nothing to do with, ah, the
fact that he was a Olympic athlete.." -- David Ryan, MD,
Oncologist. Watch it on line at: http://www.pbs.org/wgbh/takeonestep/cancer/video-ch_01.html
"Healing Cancer From Inside Out" by Mike Anderson.
DVD. Hard-hitting documentary. Raises powerful questions
about the effectiveness of, and
damage done by, conventional treatments. (5-minute Preview of it: "Healing Cancer Preview" http://www.youtube.com/watch?v=UfnIzYE4L8Y&feature=related) Promotes a diverse
as both cure and prevention. I think it would be prudent to see this,
and study the studies mentioned. While it's presented as more
white than many would prefer, there are many useful facts and cautions
in there. The key premise is that our immune system is the most
effective cancer killer, and that strengthening the immune system
should be the priority. The key diet premise is that our modern western
correlates highly with western diseases. (cardiovascular, cancer,
stroke, diabetes, etc.)
It's not about specific niche foods. It's about the big shift in our
diets over the last 100 years, from 5% animal products plus 96
whole-plant foods, to our current diet of 42% animal products plus 51%
refined foods plus only 7% whole plant foods. Lots to chew on ...
I have a couple extra copies to loan out locally. Video preview (4:43):
"The RAVE Diet & Lifestyle" and "Eating" DVD by Mike
Anderson. Promotes a diverse plant-based diet as both cure and
the main western diseases. The key diet premise is that our modern
western diet correlates highly with western diseases. (cardiovascular,
cancer, stroke, diabetes, etc.) It's not about specific niche foods.
It's about the big
shift in our diets over the last 100 years, from 5% animal products
plus 96 whole-plant foods, to our current diet of 42% animal products
plus 51% refined foods plus only 7% whole plant foods. I think it would
be prudent to see this, and
study the studies mentioned. (RAVE acronym: R: no refined foods; A: no
products; V: no vegetable oils' E: no exceptions and exercise.) (ravediet.com/whatsinbook.htm)
I have a couple extra copies to loan out locally. Video preview (8:00):
"The Good News on Heart Attacks, Strokes, and Breast CancerThe Good
News on Heart Attacks, Strokes, and Breast Cancer" by by Maggie Mahar.
Overview of Dr. Nortin Hadler's book "Worried Sick."
Diet and Cancer . . . "The UCLA Breast Cancer Nutrition
directed by oncologist John Glaspy, is investigating whether altered
can help women with metastatic breast cancer that hasn't responded
to traditional treatment. The program attempts to shrink tumors through
a low-fat diet high in soy-based foods and fish oils . . . UC San Diego
and UC Davis are two of five clinical research centers selected for a
of nutrition and the recurrence of breast cancer. Participants -- women
who have been treated for breast cancer and are currently free of the
-- will be put on a low-fat, high-fiber diet and followed over time to
see if their breast cancer recurs. The eight-year study is the first to
take a whole-diet approach to the question of whether dietary nutrients
can protect against the development of cancer."
see the authors' web sites and DVDs for many more related book references.
Santa Barbara, California
Dr. Judy Dean offers breast ultrasounds to complement
mammography. Especially useful for women with dense breasts. (www.judydeanmd.com/)
Palliative Care Cottage Hospital. Dr. Michael Kearney.
Palliative care professionals could help much earlier in the treatment
process, to relieve physical pain, and help find options while there is
still time. He was kind to Kathleen and me.
Breast Cancer Survivors Support Group, Breast Cancer Resource
Center. Focused on conventional treatments supplemented by support,
reiki, reflexology, and meditation. Kathleen attended numerous
support group meetings in her first year. I did not hear anything about
significant diet changes. (www.bcrcsb.org)
Mary Solis, Counselor, Cancer Center of Santa Barbara. Open
to talk to anyone touched by cancer. Great resource for information on
resources, including financial assistance, home care, transportation.
Kathleen found Mary to be kind and helpful. General email:
Dale Figtree, Ph.D., Nutritional Health Practitioner, for 20
years. Thoughtful perspective on cancer treatment options. Author
of "Healing After Cancer."
Her DVD "The Joy of nutrition"
nice intro on eating fresh nutritious foods. Kathleen did not consult
with Dale, but intended to. (www.dalefigtree.com)
Dr. Han, Santa Barbara Herb Clinic. Kathleen liked Dr. Han, and
used his herbs during a number of periods over the three years.
Unfortunately she was never convinced that the herbs helped. (drhenryhan.com)
Jay Winner, M.D. stress management expert, and general physician,
offers books and classes for stress reduction. www.stressremedy.com/
Carol Silverander, author of "With
the Help of Our Friends from France: Stabilizing and Living with
Advanced Breast Cancer" www.friendsfromfrance.com
"Everyone should know that most cancer research is largely
a fraud and that the major cancer research organisations are derelict
in their duties to the people who support them." - Linus
Pauling PhD (Two-time Nobel Prize winner).
must stop paying huge sums to clinical oncologists and their
institutions for administering chemotherapeutic false hope, along with
real suffering from adverse effects, to patients with widespread
metastatic cancer." -- George D. Lundberg, M.D., Editor in Chief of The
Journal of the American Medical Association (JAMA) for 17 years, and
the past President of the American Society of Clinical Pathologists. He
is an outspoken critic of how medicine is currently practiced. Excerpt
from his essay, "Seven Ways to Reduce Unnecessary Medical Costs – Right
Get multiple opinions at key decision points throughout
treatment. Ideally at all changes in treatment. (Questions: Extent?
Stage? Any inflammatory (IBC)? Order of treatment? (Chemo/Surgery/Rad
vs Surgery/Chemo/Rad etc.) Specific chemos? Stats? Prognosis?
Get a prognosis early and often. It's good to know what
each specific doctor is thinking, even if you disagree.
Have multiple doctors reviewing the case periodically.
Be on guard against an over-focus on killing the cancer and
not optimizing overall health and survival odds. Chemo may kill cancer,
but also kills healthy cells and hence supressess the immune system so
much that cancer can grow back unchecked by a healthy immune system.
This cycle may be repeated in a downward cycle of health, even the
though the cancer is being reduced each time. In the extreme, the
fastest way to improve the cancer-marker counts is to kill the patient.
Keep looking at the bigger picture of health.
Request a "case conference" or "family conference" at key
points. Multiple doctors discussing options with the family. I
didn't hear about this possibility until after the fact.
Study the studies of studies showing the effectiveness of
Study the individual studies.
Not all chemos are the same. Different mechaninisms, different
stats, different side effects.
Learn about relative benefits vs. absolute behefits. (e.g. does
x% benefit mean a cure,
or just an extension of life by a couple months. Or for ___
treatment, does 50% benefit
mean 50 out of 100 people, or change from 2 out of 100 people to 1 out
Scrutinize reports of 5-year survival rates increasing. Is
the treatment really extending lives, or are people are just being
diagnosed sooner, but dying at the same age.
Study all side effects.
Think hard before taking treatments or pain meds that diminish
your ability to think and be your own advocate, directly or
indirectly. An indirect example is taking a chemo that may increase
pain in a previous radiation area, which then requires strong pain
meds. Once you become groggy, it may be hard to make clear decisions on
the next treatment options, leading to a downward spiral of loss of
control of your destiny.
Ask for explanations of facts and figures.
Double check chemo and perscription drugs for: right kind, and
right dose. Mostly right, but sometimes wrong.
Diagnostics: PET scan, CAT scan, MRI, CA counts, Ultrasound,
Lymph node removal: Weigh the risks of lymphodemia in that arm,
and the implications for limits on exercise, weight carrying, use,
effects of heat (hot tubs, climate, etc.)
Determine the number of chemo treatments that cross thresholds
disallowing acceptance into some clinics (MD Anderson said 3 max.) and
Find out your doctor's assumptions and values about
communication, pain, and death. Some doctors will not tell you
bad news unless you ask. Some have the belief that, "It's better that
she doesn't know, because it will cause extra anxiety."
Decide what type of communication you want and insist on it. Tell
your family and friends so they can fight on your behalf.
The main doctor may only be focused on your situation an hour
every couple weeks, plus the doctor is juggling lots of other patients
concerns. If you want more focus than that, consider paying
extra. Definately don't expect a standard doctor to research and
remember everything, given the limited time.
Consider thinking of your doctors as advisors and consultants,
with you as the manager/owner. While it may be tempting to think/hope
the doctor is worrying constantly about how to take care of you, like a
dad or mom, given their number of patients, and non-family
relationship, the odds seem low. This may be tough to accept,
especially if you like your doctor and they like you. Even more
so if you're low on energy, or high on medication, and haven't
identified someone else to be your advocate.
Get extra help and attention during critical/urgent periods in
your treatment. Your needs are likely to require more or less
than uniform scheduling.
Keep your own condensed summary of the situation. Name, contact
info, emergency contacts, medications (chemo, pain, blood boosters,
etc.), allergeries (e.g sulfa drugs, latex, milk) plus a
chronology of key events such as tests, proceedures, chemo changes,
cancer counts, etc. ( date with a line of info, or two.) Keep copies
with you, partner, in car, etc. Kathleen and I found the summary
particularly useful in new situations with new medical professionals,
and in emergency situations. The doctors and nurses found it
useful too. It grew to be four pages over three years. To see its
usefulness, imagine it's Friday night, at the emergency room, in pain
and not thinking right, and your main doctor can't be reached for three
days. What would the medical staff need to know about you? Or if you're
consulting with another doctor who doesn't have access to your
file. Lots of questions like, When did you start ___? When
was your last ____? Maybe leave off social security number.
Keep a portable filing system with key info. that keeps coming
up. We grew to a plastic 6" box, with a file folder for each doctor,
summaries, drug info, questions, etc.
Have a bigger filing system at home.
Get a small audio recorder for key medical discussions and
instructions. Especially if under side effects of chemo or pain
meds. Partner or family can listen later to double check the
Consider keeping a general practioner (GP) to play an important
oversight role in cancer treatment. My partner came to rely on
her oncologist as her primary doctor. After seeing 10+ chemos fail, I
now wonder if a GP might have advised an earlier stop to that approach
and inspired a search for alternatives. or at least stopping
treatment. It's hard to generalize I know. I keep hearing
that in England, France, and Germany, with access to the same science
we have, then tend to opt for surgery but much less chemo and
radiation. Again, a GP may be more likely to have that overview
than a specialist in one aspect of treatment.
Statistics are important for the overall field, and for policy
makers, but it's less clear how statistics can guide an individual's
choices. Kathleen's IBC stage appeared to imply 20%-30% odds of
living five years, even with chemo. While some people might see those
odds and choose no chemo and to "get their things in order", Kathleen
saw the 30% as a very real chance of making it. She read stories
of IBC patients dying. But she also read stories of IBC patients living
on & on. She decided to keep trying, which to her meant keep
trying different chemos, hoping ot find one that would stop the
Correlation does not mean causation.
Is an outcome because of treatment X or inspite of treatment X?
Ways the partners, family and friends
Listen to the person's wishes and help bring them about.
The wishes and
priorities may change with mood and energy. Sometimes optimism.
Sometimes fear and doubt. Sometimes a wish to focus on cancer
issues. Sometimes a wish to focus on more normal and fun
things. An extra challenge is that the person will likely be
worried about your feelings too, and may hide some of their real
feelings and wishes. Keep listening, watching body language,
averaging the info over multiple interactions.
Gather information on treatments options, pain control options,
options, specific hospice doctors/nurses/attendants.
Help with food. Traditional cancer treatments often have the person lose interest in food due to exhaustion,
metallic taste, nausea, constipation, diarrhea, mouth sores, etc.
etc. As you can imagine, limited or poor food choices are not
sustainable for monthes and years. Help the person find foods they
like. Bring food. Arrange for deliveries.Cook; make juices; garden ,
try more raw foods, etc. etc. Steer the person away from junk
foods, processed and refined foods, etc. They need the absolute
best foods, whole, fresh, ripe, organic, etc. Dig into the debate
about antioxidents, sugars, etc. "Fruit is good." vs "Fruit
is bad.", etc. Note there are proponents of on both sides.
(I'm on the fruit is good side.) Dig into the research of T. Colin
Campbell, Caldwell Esselstyn, MD, John McDougall, MD, Joel
Fuhrman, MD, etc., all suggesting that a low-fat diet, free from animal
products (meat, cheese, eggs), is the best way to prevent and REVERSE
cancer, and prevent heart desease, stroke, diabetes, etc. etc.
Get clear on who has direct access to information, and who can
medical decisions. (use written medical directives, durable powers of
attorney, or even simple signed statements.)
Take person to treatments
Take person to consultations
Double check medicines and doses
Organize medicines and doses.
Help organize bills. Pay bills.
Get /prioritize mail.
Maybe a "Newsletter" type emailing to keep friends informed.
Call to get information.
Help resolve insurance issues.
Keep person's medical history up-to-date.
Help arrange the house or bed area for person's
convenience. (lights, water, meds, food, phone, etc.)
Bring flowers. Plant flowers.
Pets: Walk them. Take them to the vet. Stock up on pet food.
Watch movies, etc. together.
Note key requests, wishes, philosphical comments, etc.
Carefully try to find moments to ask the person if there is
something else they want, or want to try. This can be tricky
fear or doubt in your eyes, may increase the fear in the person with
cancer. On the surface, Kathleen was mostly a warrier and
and wanted to carry on a normal life. Only occasionally did she show
fear or doubt. After her death, some of her writings showed more
doubt. I found a plan she called "Code Red" focusing on
exercise, and meditation. Five weeks before her death she said, "Do
'Code Red' now!". But she didn't say that to me. We were
focused on her wound care, special bandages, pain meds, medical
appointments, insurance companies, etc. When I thought we talked about
everything, it's now clear that in my trying to support her choices and
her to not wanting to unduly worry me, some things were not said that
might have helped.
Prognosis - Early and often
Kathleen was not told her prognosis until five days before she
died. The doctor did not volunteer it. Kathleen and I did not
ask. I regret both. Prior to that, I could not imagine the
prognosis changing anything. We were determined to keep fighting.
In retrospect I can see many advantages to hearing the prognosis early
and updated often.
Medical reason: options are broadened. If the patient and family
hears that the current plan is not working, they can devote arbitrarily
large amounts of time/money searching for alternatives, extra info, 2nd
opinions, etc. I don't think it is reasonable for any of the
participates to believe that one doctor has 100% of the available info,
especially for relatively rare forms of cancer. The primary
doctor, with limited time, can utilize the bigger time budget of the
patient and family to get you more info. The odds may not be greatly
enhanced, but more info/eyes/tests would increase the probability of
finding an answer. In Kathleen's case, we were gearing up to talk
to MD Anderson, UCSF, Stanford, Dr. Kass, etc. We had just finished
collecting the medical records. My mother had flown out to help make
arrange the appointments. (Two days before admission to Cottage
Hospital.) If we'd known the prognosis earlier, we would have had
more urgency and the time to get lots more info. The key doctor
could help guide the investigation with suggestions, keywords, etc. If
we'd known a year ago (after the 3rd chemo) we would have had
significant time for further investigation. Lots of lead time is needed
for screening appts and then follow-up...
Medical reason: Family as data gatherers: The family can devote
many more hours of patient observation. The patient and/or main doctor could guide/request
it. Specific info. Signs to look for, etc. Again this is a
leverage strategy. The main doctor might see a patient for an
hour every 3rd week. The family can observe the patient for many hours,
and at different times of the day, and exertion levels.
Medical reason: Key decision points explained early: Ex.
Last operable extent of spread. Certain chemo results in
radiation recall, which requires pain meds, which limits decision
making ability. Etc.
Medical (?) Patient Care and suffering: The family could provide
more care when most needed. Kathleen suffered physically and
emotionally during the last two months, while I saved four weeks of
vacation time for some "future time when it was really needed for
Kathleen." I would have liked to ease more of her suffering and
loneliness. My mother could have helped earlier. Kathleen's brother
could have helped earlier. On the morning of her death, she
informed me, pretty lucidly, that the nights in Cottage Hospital were
"... horrible. Nobody was there ..." I wish I'd stayed with her
every day and night, instead of pacing myself for a longer-term
Family Psychology: It would be nice for the family to feel that
they tried everything and did everything they could. While I feel we
did pretty good, I know there is more we could have done.
Other life choices: Moving to a new location. We had considered
moving to a new area. In retrospect, it would have been terrible
timing personally and medically. Family trip timing (e.g. Nice to have
a last trip when possible, and to avert key family members being
unreachable at the end.) Getting married. (e.g. Kathy and I were
waiting for her to feel stronger physically. Had we known, we could
have chosen to
get married no matter what.)
Financial: Buying a new house/car/etc, or not.
Secret/hidden investments, insurance policies, cash, jewelry, etc.
Legal: Where is the will? Is it up to date? Explain the details
so the administer is not guessing which item is which.
Psychology for patient and family: Key meetings. Key information
transfer. Deeper discussions of philosophy, spirit, and religion.
Ways a doctor could tell a person early and often
General Info sheets: Many of the medical issues/questions
discussed, seemed to have general responses that apply widely.
For example, the 3-chemo limit rule. That could be in a
or a web/wiki page. Plus: signs of decline. Invitations for
more prognosis. The doctors investment in writing it down, might
save some net time, and help patients who might be foggy headed.
(In general, I think more written down would have helped Kathleen. We
often had to replay a recording of the discussions to get the info
think it may save doctors net time and accuracy.)
Timeline/Sequence/Plan for specific patient. Simple
projected sequence of chemos, with notes/milestones about key decisions
and implications. (e.g. 3-chemo rule.) If done early, the patient
and family sees a warning first at a time of optimism, and can deliver
their own bad news, if necessary. The business/engineering world has
project plans for many small projects. Some simple written
patient plan, might help the patient, family, and consulting
physicians. Make it simple to update/adjust as necessary.
Verbally: tell very early. At the start of chemo 1, and then
chemo 2, tell patient that if no response by chem 3, might have a year,
based on the treatments you've seen.
Keep asking patient and family. How much prognostication they
Keep telling patient that the plan is based on your knowledge of
the field and that they may benefit from additional opinions.
Specific suggestions for getting those opinions would be particularly
For the three years before the breast-cancer diagnosis, Kathleen
complained of feeling very weak and tired, and ashmatic for the first
time. She had just finished three years of taking care of her mother
with a stroke. The doctors did not find anything specifically
wrong with Kathleen. It wasn't clear if some of it was the emotional
pain of losing both her parents, plus the exhuastion of taking care of
her mom. In retrospect, this could have been investigated
further, and we could have devoted more time to getting her feeling
Mammograms and "dense breasts". Kathleen got regular mammograms,
but the results always mentioned limited confidence based on "dense
breasts". We could have looked for other screening
techniques. (Ultrasound, Ductal lavage, etc.)
Thyroid hormone replacement medicine associated with breast
(International Nonproprietary Name: "levothyroxine". Common brand
names: "Synthroid", "Levoxyl", "Thyrax", "Euthyrox", "Levaxin",
"L-thyroxine", "Eltroxin".) Kathleen had taken Synthroid for over
Two years before Kathleen's death, when the IBC showed up,
Kathleen had the the strong impression that her main two doctors were
pessimistic about her chances. She chose to try to ignore that and
prove them wrong. In retrospect, we could have take that as a
prognosis, asked more pointed questions, and rethought the plan.
Six months before her death, her blood tests showed that her
cancer makers (CA 27,29) were starting to increase much more than over
the preceding two years. That motivated more frequent changes in
types of chemo treatments. It could of been a time to rethink the
strategy and get more opinions. She was starting teaching
jewelry, and wanted to have a "normal life" for a while. She
wanted to wait on taking the time to get other opinions.
Three months before she died, her visual IBC effects on her skin
were progressing rapidly. She also started loosing body fat, and
had increased swelling in both arms. (lymphodema) Her total
weight stayed the same. Note that she got weighed at each doctor visit,
but it was total weight, which was staying the same. At home we had a
scale that measured both total weight and body-fat percentage. She was
biking more, so initially we though it was conditioning. But the rate
of fat loss seemed too fast, and kept going after she stopped riding,
due to dizziness from the pain meds. The skin progression, fat
loss, and lymphodema seem like huge red flags. At the time, we
knew it was bad, but didn't know how bad. We still assumed that it
was a matter of finding the right chemo to stop it.
Two months before her death, she had her first thoracentesis.
(removal of fluid from the chest cavity) I heard later
(after her death) that this often happens in the last six months of a
cancer battle. In her case, she needed it done again six weeks
later, and then again a week
before she died. It appears that it was the increasing fluid
build up spreading cancer into her lungs, that eventually stopped her
1.5 months before she died, we showed the doctor the photos of
the IBC skin progression. He looked for a while, and then quickly
pushed his rolling chair back far away from the photos. It struck
me as a little odd, as if he had an emotional reaction to the
photos. It retrospect, it is likely that he was pessimistic about
her chances, but was uncomfortable telling us that.
One month before she died, a different wound-care doctor, wrote a
letter to the insurance company, at Katlhleen's request, about paying
for special bandages. In the letter, the doctor mentioned her poor
response to chemo treatment, and likely needing the bandages for
approx. "three months." She was initially quite upset to read
that three-month projection. As we discussed it, we figured he had to
say some time period, and that was OK to get started. We
should have asked that doctor. It was the closest we got to a
The Dying Process, A Journey From the Known to the Unknown, By
Angela Morrow, RN. A description of the body's changes in the
last months and hours:
vs Conventional-Experimental, Complementary, Non-Conventional,
and AlternativeTreatments - Thoughts and Observations
Different cancers and cancer stages, may imply different choices
There is a wide spectrum of treatment possibilities and
options. ("Option" in the sense of your choice, not necessarily
presented to you as an option by a doctor.) Within conventional
treatments, there is the option of just surgery, and no radiation and
chemo. (apparently more often the standard in Europe) There is an
option of limited chemo. Kathleen's doctor said the first chemo dose
she got probably killed 95% of the cancer. While he/she continued
chemo for seven more courses (on the original breast cancer), an
argument could be made to stop after one course in order to minimize
weakening her immune system more for diminishing gain.
Complementary choices such as nutrition, exercise, relaxation, support
groups, could be done at the same time as conventional treatments.
There are a wide range of other alternatives.
Conventional diagnosistic techniques are one choice. Conventional
treatments are a separate choice. Diagnostics could be used to
monitor the progress of any treatment.
Annectodal evidence is presented by conventional and
non-conventional doctors. Critics of non-conventional treatments
correctly point out that proponents often hold up annecdotal evidence,
rather than peer-reviewed repeatable research studies. But, I've heard
conventional doctors say annecdotal things too, like, "I've seen
good response to ____", etc. Ask around, and you'll hear stories
of success and failure using a wide variety of treatments. The
pattern is not always clear.
When a field has so many opposing arguments, it may not have very
mature science. The answer may be that we just don't know much
about cancer yet, both causes and treatments. At the moment, I
don't have a good reason to have great faith in conventional or
non-conventional approaches. I do have a leaning towards trusting our
immune system that evolved over millions of years, rather that chemos
created in the last 30 years. My leaning is towards things that
strengthen the immune system, including a very diverse plant-based
diet, as close as possible to how we evolved. Not specific niche
foods or supplements.
I really don't know. I look forward to reading more overview
studies of studies, and generally learning more about the subject.
Disclaimers and Assumptions
I'm not a doctor or trained in biology. (Software Engineer.
BS Physics, BA Math/Economics.)
I don't know how the universe really works, including life/death,
mind-body interaction, consciouness, etc. etc. The older I get,
the less I think I know.
I think that cancer is more complex than we can currently fully
understand, model, and manage.
I think conventional western medicine is better at somethings than
others. It may be very good at surgery, broken bones, etc., and
still not be predictable/reliable with chemo, radiation, drug
interactions, high-levels of pain medication, etc.
I think most medical practioners are sincere.
I think most medical practioners are very busy, and focus on a
limited range of possible treatments, that they believe have the best
odds of helping.
My thoughts on cancer are deeply influenced by the three-year
battle my partner fought and lost, as described elsewhere in these
My thoughts are influenced by the statistics on the people I've
known directly, who had cancer. Three people had only
surgery and are alive six years later. Four people had the full
treatment of surgery, radiation, and chemo and died within three years
of starting. I have not known anyone that tried only an
alternative treatment, or did nothing. These annecdotal stats are
easily dismissed as not standardized re the form of cancer or the
stage, and other factors. I don't draw strong conclusions from these
stats. But I do take them as a wake up call that things aren't as
clearcut as we'd hope, and as motivation to ask harder questions..
My thoughts on cancer are also influenced by my experiences in
vegatable gardening over many years. I studied many perscriptive
approaches to gardening, and tried to glean the underlying principles
in common. I came to favor an approach emphasizing biodiversity,
and generally trying to mimic the complex interactions in nature where
possible. (approx Permaculture)
In cancer treatments, I see conventional treatments' emphasis on
specific chemicals as analogous to conventional agriculture's emphasis
on simplification, monoculture, and specific chemicals. More organic
integrated approaches to gardening seem closer to cancer treatments
that emphasize strengthening the immune system so that it can fight the
cancer. I certainly understand the scientific temptation to
simplify, in an attempt to understand the key factors. Einstein
said, "Everything should be made as simple as possible, but not
simpler." Where to draw that line is a key challenge..
My Experience with Cancer
Alden Smick stopped breathing on October 17, 2007. I
squeezed her hand and kissed her bald head one last time. Six
hours earlier the doctor had said she had "12-24 hrs." Earlier
that day he said she had "two to three days." A couple days
before that he said she had "weeks not months." A couple days
before that he said she had "months not weeks." Before that we
all assumed she had a couple of years at least, and lots more chemo
treatments to try. After a three-year battle with inflammatory
breast cancer, it all seemed to unravel in a blur of five days in the
hospital. It felt like everyone was acting like she'd get
then suddenly it was too late. At the time, it felt more like an
accident than a inevitable outcome.
What happened? Could something have been done
wonderful life partner of 11 special years was gone. My caregiving job
was over. My job to learn the lessons had started.
Kathleen loved Star Wars and Star Trek and had faith in conventional
medicine. I supported her right to choose her options. I watched 10+
different types of chemo treatments fail to cure her, and in fact cause her deep
discomfort. Kathleen wanted her team to be optimistic. Her
main doctor was a bright thoughtful person, facing a rare aggresive
disease, and a patient that desparately wanted to hear good news. In
it was clear that he sometimes chose silence over full
disclosure. On a human level, I can understand that, and forgive
him. I can't forgive myself for not asking him much sooner. I
assumed he'd say something. I assumed the other doctors would say
something. I assumed the prognosis wouldn't matter. I
assumed that Kathleen was right in assuming that it was just a matter
of finding the right chemo. I assumed too many things. I
wish Kathleen and I had asked harder questions of
doctors early and often, while there was time to investigate other
other treatments, or at least final years/months/days without chemo.