LEGISLATIVE BEAT

Medical Advocates Smooth the Path

1414 Prince Street, Suite 204, Alexandria, VA 22314

(703) 548-1225 • www.FightColorectalCancer.org

Julia became instrumental in MariliaSardinha’s battle, and now a healthyMarilia returns the avor as C3’s Advocate in Action (see page 5).Both Julia and Sara learned valuablelessons about advocating or the best possible medical care:

1. Be the extra eyes and ears

An advocate can really help by takingnotes during doctor visits. The patientand amily, who are coping with roller-coaster emotions, usually nd it hard toabsorb inormation. “I took both o mybest riends with us to the doctor,” Sararecalled, “because we knew that Neiland I couldn’t think.” By writing notesor using an inexpensive tape recorder,the advocate can capture inormationor later review by the patient or amily.

2. Get the facts

“Facts are rst,” according to Dr. Heinz-

continued on page 6

VOLUME 3, ISSUE 4 SUMMER 2008

FROM THE

PRESIDENT’S DESK

........................

FITNESS

Riding High For Health .................

POLICY

C3 Advocates Go to the Hill .........

ADVOCACY

Donations Honor Memories ........

Moving towards better care and a cure

C3: MomentumC3: Momentum

VOLUME 4, ISSUE 4 SUMMER 2009

Winning the fght against colorectal cancer

IN THIS ISSUE

by Mary Mitiguy Miller

In the course o our lives, many o us will know—and want to help—someone living with cancer. Oneway to help is to become a “medicaladvocate” by assisting with thenavigation o the medical maze,researching the latest and mostrelevant treatment inormation, orwading through the food o nancialand insurance orms.No matter what the tasks, the missionis to clear obstacles and smooth the path or the person living with cancer.The advocate might be a close riendor a spouse. Sara Jervis in WashingtonState married her childhoodsweetheart Neil more than 35 yearsago. When Neil was diagnosed withstage IV colorectal cancer, there wasnever any doubt that this marathonrunner and Ironman competitor wouldhave the ghting spirit or a hard raceagainst cancer.“Neil’s got enough to do, battling thecancer,” Sara said, so she handlesthe details, including siting throughmedical reports and online supportgroups, searching or the next step intheir marathon through cancer.Sometimes the advocate is a totallynew acquaintance. Julia Vigue hadhelped amily members through cancerin her small Maine community. Whenshe heard about a young single motherin town diagnosed with advancedcolon cancer, she oered to help. Jose Lenz o the University o SouthernCaliornia who writes a regular C3 blogat www.FightColorectalCancer.org/ Lenz. The rst step, he stressed, is towrite down the exact name and stage o the cancer. As tests are completed, it’s

www.FightColorectalCancer.org

I lost my mother todiabetes ten yearsago. When she passed away, myather and I askedamily and riends todonate to a diabetescharity in hermemory. We knewthe donations werewhat she wanted –but we didn’t knowhow good theywould make us eel.Every donation noticelited our spiritsduring a very hardtime. Just holdingthe notices remindedus o how much she was loved andmissed by others, and that helped us aswe grieved or her.Margherita Michelson (page 7) haswalked the same path. Her husband,Rob, was one o C3’s most activeadvocates, and played a key role in thedevelopment o our advocacy program. WhenRob died in2008, Margheritaasked riendsand amily tomemorialize himthrough donations to C3. Donations poured in by the hundreds; we sentMargherita notications or monthsand months ater his passing. Nothingtakes away the sorrow o losinga loved one, but as she explains,supporting a cause that meant so muchto Rob made the pain o his death a biteasier to bear.

FROM THE PRESIDENT’S DESK

Board of Directors

Nancy Roach

Board Chair

Alan Balch, Ph.D,

Vice Chair

Greg Crafts,

Treasurer

Robert Erwin,

Board Secretary

Carlea Bauman,

President

Steven Depp, Ph.D. Andrew Giusti, Ph.D.

Medical Review Network

Nancy Baxter, MD, FRCSC

University of Toronto

Al B. Benson III, MD, FACP

Northwestern University

Richard Goldberg, MD

University of North Carolina

Axel Grothey, MD

Mayo Clinic College of Medicine

Heinz-Josef Lenz, MD, FACP

University of Southern California

John Marshall, MD

Georgetown University Medical Center

Howard McLeod, PharmD

University of North Carolina

Neal Meropol, MD

Fox Chase Cancer Center

Edith Mitchell, MD

Thomas Jefferson University

Daniel Sargent, PhD

Mayo Clinic College of Medicine

Joel Tepper, MD

University of North Carolina

Donations to C3 Transform Awareness into Action

By Carlea Bauman

President

Margherita isone o many people who havememorializedtheir loved onesby supporting C3.Starting with thisissue, we will sharethe colorectalcancer angels inwhose names ourwork continues. And C3 continuesto work hard onmany issues inour ght againstcolorectal cancer.Our top priority isthe national screening legislation (page4), but our policy work goes muchdeeper than that. I urge you to ollowus on Twitter at twitter.com/ghtcrc ordaily updates or check our home pageat www.FightColorectalCancer.org.In the meantime, gain inspiration romolks like JonOlis (page 3),who creditshis bikewith helpinghim win hisght againstcolorectalcancer, or Brenda Elsagher, whomanages to nd humor in theunlikeliest o places (page 5).Rob Michelson coined the phrasethat “awareness without action ismeaningless.” C3 works every day totake action against colorectal cancer.Your support makes our work possible.Thank you!

DON’T FORGET

August 18th, 1:30 – 2:30 PM EDT

CancerCare’s Telephone Workshop:Medical Update on Colorectal Cancerfrom 2009 ASCO Meeting

Registration required atwww.cancercare.org/tewor by calling 1-800-813-HOPE

October 4th • San Francisco, CA

Strides for Life/Get Your Rear in Gear5K Run/Walk

www.getyourrearingear.com

November 14th • Alexandria, VA

Get Your Rear in Gear5K Run/Walk

www.getyourrearingear.com

We knew the donations were whatshe wanted – but we didn’t knowhow good the donations wouldmake us feel.

Rob Michelson (center) was one of C3’smost active supporters, arranging forC3 advocates to ring the Opening Bellat the New York Stock Exchange in 2007to increase public awareness of theght against colorectal cancer.

C3 Momentum Summer 2009

LEGISLATIVE BEAT

FITNESS

Survivor Jon Olis: Leaving Cancer at theBottom of the Mountain

By Carlene Canton

Summer is a great season to startexercising, and or people ghtingcancer, that just might be thedierence between winning and losing. Just ask Jon Olis, age 41.When he hops on his mountain bikein Southern Caliornia and pusheshimsel to ride to new vistas in recordtimes, there’s always a thought in theback o his mind:“I I can do this, I must not be sick.”It’s a thought he has clung to overand over again throughout his battlewith stage III colon cancer that beganin 2004. Four major surgeries andchemotherapy ollowed. But by 2006, Jon was ready to dey his cancer andget moving again. He chose mountainbiking, started pedaling, and has neverlooked back.He climbed 130,000 vertical eet on hisbike in 2007 and more than 200,000eet in 2008. That’s the equivalent o climbing more than 60 vertical miles in just two years.Today, Jon is in the best shape o his lie. While quick to acknowledgethat his level o tness is extreme, healso believes that committing to anylevel o exercise brings huge benets, physically and mentally.Everyone will have their own starting point and will improve at their ownlevel, he said. It took him nearly a yearto start working out again ater all thechemo and surgeries.“The key is to nd something youenjoy and stick with it,” he said. For Jon, mountain bike riding and racing proved to be his passion. “I get homerom work and ride out and beore Iknow it I’m overlooking the ocean andany stress I eel – rom work or rommy illness – is gone.”Fighting cancer has been the toughestbattle o Jon’s lie. Now, riding his bikehigh into the mountains, orging newupward trails is somehow synonymouswith leaving cancer behind – ar belowat the bottom o the mountain.“It’s a visual image I like a lot and it’sworking or me,” he said. Today, Jon is just weeks away rom reaching his ve- year cancer-ree benchmark. No doubthe’ll celebrate that milestone with hisamily – wie Laura and children Skylerand Jared – and then hop on his bikeor a long, celebratory ride.

Jon Olis hopes to inspire others(including his children Skyler and Jared,pictured above) to make sport and tnesspart of their lives.

Kick-starting YourExercise Program

Exercise can be the best medicineto control stress, build strength andstamina, speed up healing, and give youcontrol over part o every day.1) With your doctor, dene specic goalsand plans to t your current exerciselevel and treatment plans.2) Do something active every day.3) Start slowly, just 5 or 10 minutes aday. Gradually increase to 30 minutesa day or more. Ater treatment,your goal can be 45-60 minutes o moderate exercise daily.4) All exercise can be done in shortspurts: Three 10-minute sessionsequals 30 minutes a day in benets.5) Wear a pedometer: Aim to increaseyour daily steps. Try to park artherrom the oce, or climb a fight (ormore) o stairs beore getting on theelevator.6) Use a stationary bike or treadmillwhile watching TV.7) Exercise with amily, riends, or co-workers. A “walk-and-talk” lets themactively help you - and decreasestheir own risk or health problems.8) A ew precautions:a. Those with neuropathy orosteoporosis: A recumbent bicyclemight be better than a treadmill tobuild muscle.b. I you have severe anemia, you mayneed to delay workouts and ocusinstead on 10-minute stretchingsessions.c. I you have lowered immunity, avoidpublic gyms.d. While getting radiation, avoidchlorine swimming pools (chlorinemay cause skin irritation). Avoidresistance training o muscles aroundan in-dwelling catheter.