Speaking From Experience…

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February 2012: 2 months before diagnosisSymptoms: waistline started to bulge, gained weight for the first time, bowel shape/size changed, and it was getting harder to eat as much as usual

Apr 2012: 2 weeks before diagnosisFootball sized fluid filled “something”, pelvis starts to bulge, eating is more like nibbling

Of all my friends, I was the “picture of health”, at 53

Houston, We Have A Problem…

• Took me seriously; knew me • Quickly ordered Tests – Blood work, CT scan• Maybe a football-size fluid filled cyst; unsure• Introduced me to Care Manager, Paula Amormino• Helped clear lungs of Bronchitis JIT for surgery

Primary Care Physician

Ellen Higgins, PA-CRadiology

• What if it’s cancer? It DOES make a difference to have a cancer surgeon in case it is cancer…and, why not the best?

Friend Ellen From Church

Dr. Glenn Taylor, MDInfinity Primary CarePark Family Practice

Getting To The Right Doctor for Diagnosis

Getting To The Right Diagnosis• I was diagnosed in 1 visit – unusual of for PMP• She knew the treatment – too many doctors don’t

know there is treatment and tell patients told there is no hope and suggest hospice

• There is only 1 surgeon in Michigan who does the treatment, but is not comparatively experienced with “the best”. It’s important to have “the best” first surgery, to postpone any subsequent surgeries as long as possible as usually no more than 3 are possible

• Experienced doctors like “The Master” were far away

The Leaders and Best

Dr. Carolyn Johnston, MDOb/Gyn Surgical Oncologist

Getting The Right Diagnosis

• A rare, mucin generating Peritoneal Surface Malignancy (PSM), which leads to fatal bowel obstruction/starvation

• It is considered slow growing and usually does not spread to lymph nodes or through the blood stream; regional

• It may originate in the Appendix or Ovary and is considered one of several different types of Appendix Cancer, and may be discovered during a Caesarean section or appendectomy

• Standard treatment*: - Complex Cytoreductive Surgery (CRS) - Hyperthermic Intraperitoneal Chemotherapy (HIPEC) *a highly skilled and experienced specialist is required and will have performed >330 treatments

Pseudomyxoma Peritonei (PMP) – “One in a Million”

L • “The Master”, Dr. Paul Sugarbaker, MD, FACS, FRCS• Pioneered and advanced the treatment over 20 years• Published 780+ scientific articles in peer-reviewed journals • Nearly stopped practicing 15 yrs earlier• Still practicing at 70 when he operated on me • He gets lots of requests, I’m glad he could work me in!• I prayed daily for his protection riding his bike to work• My lungs finally got cleared 3 weeks before surgery!

Getting Accepted As A Patient

Dr. Paul Sugarbaker, MD, FACS, FRCSSurgical Oncologist

Getting The Right Treatment – Lucky Me!

• I felt I had the best surgeon/care team for PMP• This was the hospital’s “biggest” type of surgery• I was the featured “live surgery” for the conference, and

participants told me I had “nice anatomy” LOL• In 10 hours, they removed 5 liters of mucin, 8 organs, the

peritoneal/pelvic/liver linings, nodules on outsides of other organs, and gave me regional chemo (HIPEC)

• The surgery was rated a “1” on a scale of 1 to 25 – great!• I experienced 20 extra lbs of fluids, insomnia, hair loss, 5

JP drains, 2 chest tubes, etc. during my 2.8 week stay• Issues: naso-gastric tube, interrupted rest, call button

Surgery and Hospital Stay

My First Surgery

• My surgeon required a “one-time” contract• I hired The Insurance Warrior to helpInsurance

Laurie Todd TheInsuranceWarrior.com

It Can Only Get Better From Here

Getting back on my feet with about 12 tubes and drains, experienced nurses, and family support

• Husband, Parents, Brother, Friends• Tens of churches praying for me• Hundreds of people I didn’t even know –

friends & family of friends & family, etc.

Family, Friends & Prayer Support

• Extremely supportive: “…Whatever it takes.” They provided a role where I could make valued contributions working from home which allowed time for proper care during my recovery.

Employer

• Primary Care Physician & Care Manager• Nurses, Technicians, Specialty Doctors & PAs• TPN Nutritionist and Pharmacist

Medical Team

Support – A Winning Team

Patient Learnings – My Success Factors• Manage your health like a project• Take initiative, question and get informed• Hire an insurance warrior if needed

Be Your Own Advocate

• Patient portals (NextMD, U-M..)• Google to find & discern information• Caringbridge.org communication saves time• Disease-specific support organizations like

PMPPals.org & Mentors (via email/phone)

Leverage the Internet

• Get on the path to recovery • Consider others are less fortunate• Share experiences/tips with other patients• Be positive, pray and be thankful

Stay Positive and Help Others

Recovery At Home Is Fancy Footwork

• Physically – fatigued with 100 bpm heart rate for 3 months, night sweats, insomnia days at a time, dry mouth, dehydration, couldn’t eat much, you name it!

• My food tray, nausea bowl, phone & intake log were close by• It was scary being alone in case I needed help and the not

knowing when I would return to my normal routine• Nothing fit & elastic hurt so I wore sweat pants for 2 months • I couldn’t sit long at the PC and walked to build endurance• We hired out the housework• I was isolated and looked forward to medical appointments

to confirm everything is “ok” and I’m making progress• I enjoyed watching the birds on the birdfeeder and the little

critters beneath it and amazed at God’s creation, and how the body “just knows” what to do to heal itself!

• Care manager identified companies providing TPN at home • Company provided weekly dietician and pharmacist consults

after lab work drawn, nurse provided support• I learned to administer TPN and experienced only

a few pump issues• It took 2.5 months for blood work to fall into normal ranges

Total Parenteral Nutrition (TPN)

At Home

Home Recovery Concerns

Medication Management Issues

Medication management issues between hospital discharge from out of state, to Michigan, which included:

1) There were no medication orders to decrease pain medication for which the side effects may have resulted in a longer need for TPN

2) Medication changes were made but not updated on the discharge sheet so I was taking higher than recommended does of Tylenol, felt miserable, and resulted in a longer need for TPN

3) 3 times the lab didn’t process blood in time as it was wasted, causing additional “rush” blood draws to be able to adjust my TPN

4) Experienced extreme constipation which resulted in a trip to the Emergency Room

Recovery

• They found a “fast-growing” secondary cancer, of aggressive looking PCMA-I* cells found in the pelvic lining and ovaries *peritoneal mucinous carcinomatosis – intermediate stage

• Treatment – FOLFOX6 Chemotherapy

• Genetic Counseling and Testing – results were negative for Lynch’s Syndrome

Many caring people who knew their stuff!

Dr. Krauss, MD, medical oncologist Pamela Fisher, PA-C (not pictured)

HomeMed: BethanyHomeMed: Mary Canton Infusion Center: Alice

The Pathology Report – Cancer #2

I Needed A Wig & Hats

It saves time getting ready for work so I can sleep longer I wanted to look healthy

Preparing to Return to Work Before Chemo

• My Care Manager helped me rethink my self-expectations and new routine• I had help finding a great wig to wear at “Susan’s Special Needs” in Ferndale• My employer reassigned me to the closest parking garage, as I tired easily• Work kept me preoccupied and was a positive distraction. I was surrounded by

caring leaders who made sure I didn’t “over do it”, which is my nature.

Shannon – Wig Consultant Kerry & Chris

No one could tell it wasn’t my hair

Chemotherapy Side Effects

Fingers, toes, hair and skin took a beatingExtremely cold…even when bundled up at 72 degrees

Avoided germs with mask & gloves and was often a “shut-in”

My Guide and “Safety Net”1) Assisted Discharge planner in Washington D.C. with

identifying TPN providers in Michigan2) Supported me during the removal of sutures and recovery

from major surgery3) Provided weekly calls during recovery & Total Parenteral

Nutrition (TPN) months to provide education and support 4) Assisted me in preparing to return to work by setting realistic

expectations with myself and my employer. This included a flexible work schedule to accommodate Chemotherapy treatments while providing a valued work assignment.

5) Assisted me in planning for Chemotherapy which included thinking about timing around year-end holidays, managing working and home life during Chemo, side effects, level of energy, protecting myself from getting sick from other people, etc.

MiPCT Care Manager

Paula Amormino, RN, MSA, CCMMiPCT Central Clinical Coordinator

Mar-Apr ‘12

May-Jun ‘12

What’s next?I’m given an 80% probability to live 20 more years without this diseaseI’m monitored for recurrence; currently no evidence of disease (NED)I’m working on lifestyle changes (nutrition, exercise, stress management, spiritual wellness, etc.) to strengthen my immune system and prevent disease

Jan ’12Feb ‘12

Sept ‘11

Diagnosis through Treatment = 1 year

July - Sep‘12

Oct ‘12-Jan ’13

Oct ‘12 Returned to work Oct 1 50%, full-time by Oct 15th, started Chemotherapy the 4th week of October

Subtle pin prick and elastic band sensations around the waist, and a “hitch” on right side

Uncharacteristic waistline bulge and weight gain, in spite of caloric reductionPrimary Care Physician (PCP) was not available, so I saw another doctor in the practice and had an ultrasound but nothing found…I needed a pelvic ultrasoundI insisted on seeing my PCP, had pelvic ultrasound, then a CT scan-issue but not sure what it is. A gynecologic surgical oncologist makes the diagnosis.Surgeon accepts me as patient, recover from Bronchitis 3 weeks before surgery, shut-in to stay healthy, got insurance to cover Surgeon 1 week before, surgery videotaped as part of conference at the Hospital

Recovery, TPN, get news I have secondary cancer and need Chemotherapy once off of TPN and stronger

Chemotherapy at Canton Infusion Center, used HomeMed for disconnect, participated in pilot for bolus (baby bottle-like infusion); no pump.

Feb – June ’13 Worked full-time from home full-time, mostly shut-in, to stay healthy and away from germs. Finished Chemo end of April. Went to “Health Camp” for a week in May.

God’s Providence

http://www.caringbridge.org/visit/kerryfannonkerry@mi.rr.com

The best outcome each step of the way!

That’s a story for another day…

Thank You