Preface
First Quarter
Day 0: Biopsy.
Day-1/2
Rule #1. Think it is Cancer.
Rule #2. Don't Make Your Tumor Angry.
Rule #3. Don't Assume Doctors Always do the Right
Thing.
Rule #4. You Must Take Responsibility for Your Health
Care.
Day 0 Afternoon.
Rule #5. Learn All You Can About Cancer.
Rule #6: Since specialties exist -- ask the
specialist.
Day 1: Decisions to Make
Rule #7: Listen to the Nurses.
Rule #8: The treatment must make sense to you.
Day 9: Surgery
Hint #1: There isn't always later.
Rule #9: Doctors DON'T Say Bad Things About Each Other
Day 9 Continued.
Day 26: Radiation
Rule #10: Be a consumer of Medical Services.
Day 42: What NOW?
Rule #11: Somehow You Can Take more than you Ever
Thought Possible.
Day 65: Chemotherapy.
Rule #12: You Will Repeat Your Life History to Every
Doctor You Meet.
Need #1: A common electronic patient records system.
Rule #13: Think Aggressively
Day 81: First Chemo Regimen
Rule #14: Check on All the Side Effects - Know Your
Drugs!
Rule #15: Surprise -- It's a Way of Life
Rule #16: Look For the Simple Answer First
Rule #17: Everyone Is Unique
Rule #18: It's Your Life, Not the Doctor's
Rule #19: See What You Can do to Make your Life Easier.
Rule #20: Your Attitude Counts.
Rule #21: Use Support Groups to Your Advantage
Need #2: Some way to Get People to Understand How to
Support the Patient (Coaching Class)
Need #3: Health Care Payment Reform
Day 103 - 208
4 Months total time - 6 rounds of chemo
total.
Hint #2: Be Open About What's Going On
Day 209
Rule #22: It's Never Really Over
Rule #23: Paranoia or Not - Get it Checked Out
Rule #24: Have a Coach
Rule #25: Write it Down
Second Quarter
Rule #26: Get your Continuing Checkups.
Rule #27: Don't Give Up Your Dreams
Day 840
Day 851
Rule #28: Get used to the Sight of Blood, Tissue,
Needles, and Medicine in General
Day 855
Rule #29: Don't Second Guess Yourself.
Need #4: Continuing Education for Medical Practitioners.
Need #5: Better Dissemination of New and Improved
Techniques and Practices
Day 860
Rule #30: Be Ever Vigilant
Day 870
Rule #31: Make Your Own Sense of Urgency
Day 871
Day 877
Rule #32: It's often hard to get doctors to talk to
non-doctors.
Day 900
Rule #33: Clinics Make Hospitals Look Like Models of
Efficiency
Hint # 3: Find Out What Remission Means to Your Doctor
Rule #34: Cancer is Binary - Statistics are Not
Need #6: A Quick Way to Resolve Disputes with Insurance
Companies
Day 901
Day 915
Day 925 - 1030 Four Chemos
Rule #35: Take a Break if You Can
Rule #36: If You Don't Like a Nurse, Get Another
End of a Time of Your Life
Insurance Hell During the Chemo.
Day 1053- Time Out for the Holidays.
Day 1067
Need #7: Insurance Companies Should be required To
Explicitly List Non-covered Treatments
Day 1078
Day 1105
Third Quarter
Day 1112.
Rule #37: Drugs React Differently by Person
Day 1119.
Day of Desperation
A Knight in Shining Armor
Rule #38: Some People really Do Care and are Willing to
Get involved
Day 1143.
Rule #39: Take Advantage of advances in Medicine
Day 1154
Rule #40: Make sure You are Comfortable with and
Trust the Other Doctors in the Practice
Rule #41: Your Routine Can get Blown to Smithereens
Day 1167
Rule #42: Tell People Around you What's Going on
Rule #43: Find your way to Handle Stress
Day 1179
Day 1193
Day 1210
Rule #44: Get All the Information
Rule #45: Stay with the Same Radiologist
Day 1221
Fact #1: Cancer Cells get Chemo Resistant
Day 1225
Back to The Knight in Shining Armor
Day 1227
Day 1239
Day 1252
Need #8: More Orientations
Rule #46: You Get Your Information In Layers
Day 1258
Day 1264
Day 1265
Corollary #1: Doctors Don't always Listen when
They Should ( See Rule 32)
Rule #47: Establish a Rapport with Your Doctors
Day 1266
Need #9: Hospitals Must do Their Part to Control
Costs.
Day 1267 - 1303
Rule #48: Hospitals are not conducive to sleep.
Rule #49: Watch Your Costs
Rule #50: Have Large Bills Audited.
Rule #51: Find a compatible nurse
Day 1304
Day 1307
Day 1309
Day 1310-1380
Fourth Quarter
Day 1414
Rule # 52: Hope is a Great and Wonderful Thing
The Five Day Argument
Rule #53: Tell your Family Regardless
Day 1424
Rule #54: Doctors Don't Communicate
Day 1427
Insurance Harassment
Day 1431
Day 1433
Not Meant to Be?
Day 1444
Day 1457
Day 1458
A New Years Resolution
Day 1478
Day 1487
Note #1: It's not always just difficult, sometimes
it seems impossibly difficult.
Day 1503
Day 1517
Day 1521
Observation #1: If you look hard enough you can
find a correlation for everything
Rule #55: Never Give Up .
Rule # 56 Exercise
Day 1554
Day 1567
Rule #57: Think Carefully Before Waiting
Day 1574
Time Out
Day 1604
Need #10: A better medical technology update
method.
Day 1605
Rule #58: Don't Hide from Yourself
Observation #2: A few days of suspended belief
doesn't hurt.
Day 1614
Day 1628
Day 1639
Day 1646
Day 1653
This Magic moment.
Day 1655
Day 1662
Day 1668
Day 1669
Rule # 59: Don't hide from the coach.
Pain Day 0
Day 1688
Rule #60: Don't try and argue with NCI procedures
unless it's REAL important to you
Rule #61: Don't Pin all Your Hopes on One Treatment -
Have a Backup Plan
Day 1691
Rule #62: Keep on Trying
NIH Problem #1: No clear entry point.
NIH Problem #2: All the different areas need to communicate
clearly
NIH Problem #3: They need a better way to pre-qualify
potential patients.
NIH Problem #4: Lack of Need #1 - the electronic patient
records system.
Day 1694
Day 1695
Day 1696
Rule #63: People are quite amazing and caring.
Day 1703
Day 1707
NIH Problem #5: The doctors who treat you are short
timers.
Rule #64: The Press Latches onto Any 'Cure' for
cancer.
Day 1710
Day 1720
Rule #65: Keep your Sense of Humor (or Get One)
Day 1721
Day 1723
Day 1724
Rule #66: Doctors are Almost Never on Time
Day 1727
NCI Need # 7: More Flexible Travel Arrangements.
Fact #2: People are so Helpful it's Astounding
Day 1729
Rule #67: Even in a single institute, Rule #54 ( They
don't talk) applies
NIH Nicety: We got anything we wanted
Rule #68: If Something doesn't make sense double
check.
Note #2: The NIH is Very Generous on drugs and
supplies.
Need #11: Someway to propagate new treatments is needed
Note #3: A Commendation should be given to those area
hotels that give NIH patients special rates.
Day 1730
Note #4: The NCI should be commended for caring
enough about a patient to provide wigs.
Note #5: I can't thank the people at Delta enough for
their help in travel arrangements back and forth to Washington
NCI Need #8: The Voucher process is a joke.
Day 1733
Day 1734
Day 1735
Day 1736
Day 1745
Rule #69: Fight For your Rights and Your Dignity
Day 1746
NCI Need #9: Local outreach or regional clinics.
Day 1749
Rule # 70 As a family member, make it your business
to get detailed information from the patient
Day 1754
Day 1760
Rule #71: During chemo, enjoy the days you feel good
-- don't feel like you have to resume your schedule.
Day 1761
Rule #72: Don't expect sympathy from your insurance
company
Day 1767
Day 1768
Day 1769
NCI Need #10 : Medical precautions are wonderful,
but factor the patient's attitude in.
Day 1773
Day 1777
Rule 73: Think before you speak
Day 1778
Day 1779
Day 1781
Day 1782
Rule #74: Think!
Day 1783
Day 1785
Rule #75: Unanswered and unanswerable questions
abound.
Day 1789
Day 1791
Rule #76: Difficult choices don't have easy answers
Day 1792
Day 1793
Rule #77: It's true - Kids say the darndest things.
Rule #78: Don't Second Guess Yourself
Rule #79: Don't close out your kids
Day 1797
Rule #80: Balance logic and emotion
Day 1798
Day 1807
Day 1821
Day 1823
Day 1824
Day 1825
Need #12: Treatment Can't be Dependent on
Geography -- Knowledge Needs to be Disseminated RAPIDLY
Day 1826 - 1830
Note #6: If using home health care for chemo,
support groups take on added importance.
Day 1831
Day 1832
Day 1833
Day 1834
Rule #81: Home Nursing gives better care.
Day 1835
Rule #82 Decide on a Living Will and a Will
Rule # 83: You'll Never Know Everything.
After It's Over
Rule #84: Loss is very individualized.
Game 2: First Quarter.
Day 0.
Rules Summary
Rules for the Coach and the Patient
Rules for the Coach
Rules for the Patient
Rules About Doctors and Hospitals
NCI Information
Thanks