Cancer Notes

Introduction

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 community, 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 the 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 breast cancer.

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, hope based on 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 mind.

With a US person's lifetime risk of being diagnosed with cancer at over 42%,  it looks like we're all in this together. (http://seer.cancer.gov/csr/1975_2000/results_merged/topic_lifetime_risk.pdf)

I welcome suggestions of other resources, and ways to get the word out.  (Disclaimers and Assumptions) 


Options for new patients

Possible strategy at time of diagnosis

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 Therapy  www.gerson.org), etc.) At 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 digression.

While it's 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, it's overwhelming and unclear what to believe.  Family, friends, or paid researchers can help find and filter 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.

Resources
These resources seem worth investigating.

National and International
 Other References

Books

Santa Barbara, California

Inflammatory Breast Cancer
Opinions Worth Weighing

Reminders


Ways the partners, family and friends can help


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.


Ways a doctor could tell a person early and often

Warning Signs Missed
Pragmatics of Death

Conventional vs Conventional-Experimental, Complementary, Non-Conventional, and  AlternativeTreatments - Thoughts and Observations


Disclaimers and Assumptions

My Experience with Cancer

Kathleen 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 better, and 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 differently?    My 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 watched10+ different 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 retrospect, 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 the doctors early and often, while there was time to investigate other doctors, other treatments, or at least final years/months/days without chemo.

(To be continued ...)


See also: Food Notes

© Copyright 2010   M Kelley Harris