Thursday, June 26, 2008

Cancer Survivor Stories

By BETH DECARBO
The Survivors

Name: Steve Scott
Hometown: Loveland, Ohio (Cincinnati suburb)
Cancer: Colon cancer that spread to the liver
Date diagnosed: Feb. 14, 2004
Status: Cancer-free for 2 ½ years

Name: Andrea Ortega
Hometown: Florence, Ariz.
Cancer: Leukemia
Date diagnosed: June 14, 2007

Name: Faith (didn't want last name used)
Hometown: Erie, Pa.
Cancer: Breast cancer
Date diagnosed: Dec. 19, 2007

The Wall Street Journal: How do caregivers support you in your fight?

Mr. Scott: As I had to travel from Cincinnati to New York for my care, caregivers played a large part in my life. I received chemo locally, but the surgeries and decisions were all made at Memorial Sloan Kettering in New York City. (Doctors in Ohio had declined to operate.)
[Steve Scott and wife]
Steve Scott with his wife

I have a very small family, only my wife, sister, and mother. My sister and wife were my rocks of support. What is most important, in my opinion is that the caregivers be there for the initial doctor appointments (where the devastating news is dispensed), for the first few chemo treatments and for the surgeries.

In addition to the medical help, I regularly visited my psychologist and enlisted the help of a "touch healer" weekly. The combination of these people and my family propelled me to continue chemo beyond what was thought humanly possible (57 rounds).

Andrea Ortega: My mom is my caregiver and without her, this experience would have been horrendous. She was by my side nearly every day that I was in the hospital. She also played "Information Central" for all my family, friends, co-workers, etc.

WSJ: What do close friends and family members do to support you?

Mr. Scott: My caregivers were directly responsible for my winning the battle, in that they encouraged me to fight. My wife and sister would cook meals for me, make me comfortable, remind me of meds and keep things as light as they could.

The most important thing that family/friends can do is keep the patient connected on an emotional level. Upon my diagnosis, I immediately began to detach from everyone. I was given less than 18 months to live, so I wanted everyone else not to feel bad when I left. Navigating the hospital stays, the surgeons, nurses, and oncologists renders the patient disconnected. I had to stay focused and somewhat hardened to keep up the brutal regimen that lasted over two years.

My neighbors were also a big part of my recovery. I felt like less than a person for having cancer, and feared that my neighbors would reject us. Instead they all jumped in with both feet, making a schedule to bring dinners to our home three times a week. I have many cards from the children in the neighborhood and received many visits. Between my family and my neighbors, I was compelled to fight what we were told was a losing battle. That total acceptance and the connectedness was the fuel for me to fight.

Ms. Ortega: I have been blessed with the best family and friends anyone could ever want. Nearly every day while I was in the hospital, someone would call just to chat. On the weekends my room sometimes looked like a social lounge. It's the little things that really make you take notice of those around you. The saying, "You know who your friends are, if they're still around during trouble," really applied in my case.

Faith: After surgery my family and friends really stepped up. They took turns getting my kids to school and cooking meals or just visiting.

WSJ: Do you have advice for bosses and colleagues that could help you at this time?

Mr. Scott: Don't treat us any differently. Don't always ask, "How are you feeling today?" Let the patient know early on that if there is anything you can do, to just let you know. Then let normalcy return to the office. I always craved normalcy.

Ms. Ortega: Again, I was extremely fortunate. My bosses and colleagues rallied around me during this whole experience. I worked in the law enforcement community, and was awed by the show of support I received not only from my own department, but from other surrounding departments. [The support made me] believe that you can beat any odds.

Faith: I think it's important for them to remember that a cancer diagnosis is not just physical, it's emotional. Sometimes your body has healed from the surgery and/or treatment far before your mind. They just need to understand that you'll have good and bad days and although most survivors are not asking for special treatment. They do need a little understanding.

WSJ: Everybody is different, of course. But are there things that people do or say that rub you the wrong way?

Mr. Scott: No. I assume, correctly I believe, that everyone means well when they are talking to me about my disease.

I was a stranger to cancer upon the diagnosis, and knew not where to turn for help. My wife and I had a huge disadvantage in that we have no family within 600 miles, and we knew no one dealing with cancer so we did all the homework, finding the best doctors and therapies without assistance. We were an island doing our own research, so when people ask about cancer, I know they must be genuinely seeking advice. There needs to be a greater awareness among all people, as cancer has become so prevalent.

Ms. Ortega: I kept my sense of humor. As a matter of fact I think that with this experience, it's probably a little better. I would joke about the hair loss, the "Chemo Brain Syndrome", the skin discoloration -- because I knew that someday it would all be gone. Yes, you sometimes get the funny looks or the whispered comments, but all in all who cares? I've learned that life is too precious to worry about whether or not someone is being rude or annoying. Every day is a gift -- that's why they call it the present.

Faith: Personally I get irritated with everyone telling me that it "could be worse" or "at least you got a tummy tuck, too." (I did tram flap reconstruction, which kind of gives a "tummy tuck" at the same time.)

Truthfully, for me, losing my breasts is a big deal, so at the moment it couldn't be worse (even though I know there are worse things to go through). I also can think of a much easier way to get a flatter belly then having your breasts removed and your stomach cut from hip to hip. I try not to let on that these statements bother me because I realize that the people saying it aren't trying to be insensitive they just don't know what else to say.

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