Survivorship--An Interesting Label

Many of my friends don't like to be called a "Cancer Survivor." They describe a variety of reasons for this objection.

For some there is the fear that using the term "survivor" tempts fate. How do you know that have you survived? Cancer can return. Are you ever safe?

Others say that they have friends who worked hard to rid themselves of cancer, but they died anyway. They feel like they are disloyal to those loved ones by calling themselves survivors when really, they just feel lucky.

Some think the term "survivor" is overused to the point where it no longer has meaning. In years past you needed to be years away from diagnosis and treatment in order to be labeled a survivor. Now you receive the label as soon as you are diagnosed. What does the term "survivor" mean in that context they ask.

Friends say that they are confused with the current trend of calling family members and friends "cancer survivors. They don't argue that these people should be acknowledged for all that they do and go through--but where do you draw the line?

Where did all of this start? I did a little research and found out that Dr. Fitzhugh Mullan is credited with being the first person to coin the term "cancer survivor." The source of my information is the transcript for Neal Conan's Talk of the Nation NPR broadcast on June 9. 2004.

The transcript of the program is available for purchase so I can't give you a link to it, but I can tell you about the show. You can find this transcript in the National Public Radio Archives.

Neal Conan started the program by saying, "According to the latest estimates, there are 10 million Americans alive today who've had cancer which raises a host of issues about after care and screening and depression and health care and stigma, many of which are symbolized by the controversy over what we call people who live with this set of diseases. For many, 'cancer survivor' implies that they've been cured or that they've won a heroic struggle, and neither may be accurate."

Dr. Mullan talked about his relationship to cancer and how it lead him to use and embrace the term "survivor." In 1975 when he was 32 years old he discovered that he had a "major cancer" in his chest. He had surgery, radiation and chemotherapy. Mullan was sick, fearful of dying and desperate to know that he would be cured. What he came to understand was "..for most everybody with cancer, the binary notion of either death or cure ...isn't the reality. The reality is kind of a DMZ, a kind of purgatory in which, for a long time, it may not be clear exactly the outcome with lots of complicating issues that nobody really focused on."

He started to think of this period of time as the seasons of survival. He wrote an article published in the New England Journal of Medicine 1985 that developed this concept and coined the term "cancer survivor."

Mullan explained that if you get past the acute period where you are being treated for the disease, you will enter a longer period where the outcome of your disease is uncertain. You deal with medical complications, social, vocational and financial issues. If you get through that you continue on to what he calls the period of permanent survival--meaning that whatever problems you have will stay with you for the rest of your life.

You get to keep the good things that occur during this process too-- like learning how tough you can be. And that is what being a survivor is--dealing with this entire range of experiences.

Dr. Mullan says that while it may not be a perfect term, so far he hasn't found anything better.

No one else has either--or so it seems. Perhaps it is the correct word. Perhaps there isn't a word that really fits.

Dawn was the last person to call into Talk of the Nation that day. She said, "...I'm wondering why we need a term, why can't we just say We're people who were diagnosed and are living with cancer?"

That's a solid thought, but it sure doesn't fit on a tee shirt.

So what are your reactions and opinions on this term? Do you have any suggestions?

Don't Ask Don't Tell

A dear friend of mine has non -small cell lung cancer. She tells me that when people hear what type of cancer she has, they assume that she is/was a smoker. One of the first questions out of their mouths is "How did you get this? Did you smoke?"

Lung cancer has inflicted another ugly and painful change in her life-- she is constantly being judged. People seem to feel, or at least imply, that she is getting what she has coming to her. She told me that even some medical personnel were caught up in this blame game.

My friend and I spent some time exploring reasons why people felt it was necessary to make these assumptions and ask such loaded questions. We came up with a few ideas, like rampant foot-in-mouth disease, insensitivity, ignorance and/or fear.

It's the last reason that I think is the most likely culprit. I think that people are searching for a reason to distance themselves from you, the person who had to have done something so terrible that you called this down upon yourself. There has to be a reason that this happened to you. There has to be a reason why it won't happen to them.

I've had personal experience with this phenomenon. My younger daughter has significant disabilities. She has amazing gifts too but what the world at large sees is an individual who is non-verbal and has obvious cognitive deficiencies.

When she was younger most of our play dates were with a mother and daughter that we met at OT, PT and speech sessions. Inevitably, when we were walking around the zoo, shopping or just having lunch someone would come up to us and comment on our children. I would be treated like a saint while my friend would be treated like a criminal. The reason for the discrepancy in our treatment was just this, my daughter is Korean and I am not. My friend's daughter was her obvious biological child. I was judged saintly because I adopted a child with a disability. She was viewed with suspicion because her offspring's disability likely had something to do with questionable activities during pregnancy or bad genes that she willfully passed on.

Having a child with a disability is a scary thing. People want to find a way to assure themselves that it will never happen to them. That's where the judging comes in.

The disability community gave me a useful way of looking at this situation. They talk about the world in terms of being disabled and not currently disabled. It's a startling thought--but one that we should all consider. Most human conditions are transitory. Understanding that will help us be more open to all the possibilities life hold for each of us --and then maybe more compassionate and understanding of what it is like to live with these realities.

Anyone can become disabled, anyone can have cancer.


My friend wonders if the question--what did you do to get cancer-- implies that if you did smoke then you are less deserving of being helped.

She points out that whether you did or you didn't smoke, eat red meat, use deodorant, take HRT,
do drugs, etc that fact is that now you have cancer and you need treatment.

My friend is smart and quick- witted and she can take care of herself in these types of situations. But why should she have to? She is and always has been a non- smoker--but really why should she have to say that?

So here is the take away message, be careful about the questions you ask. Be even more careful about the way you judge others. It's a tendency that serves no productive purpose.

Getting a Second Opinion

QUESTION: Is it important to get a second opinion after you've received a cancer diagnosis?

ANSWER: YES! Absolutely!! Just do it!!

REALITY: Asking your physician for a referral to another doctor can be daunting.

You may worry that you will insult your doctor by appearing not to trust his or her abilities.

You may be concerned that asking for a second opinion could, in some way affect the type of care that your physician will provide in the future.

It is also likely you feel pressured for time. You want to start your treatment as soon as possible. You want the cancer gone--NOW.

For all of these reasons--and more--you may want to talk yourself out of getting a second opinion. But don't. It's important to spend some time planning how you and your medical team will approach your care.

Here are some things to consider that may help you take this important step:

• Physicians themselves ask for second opinions when they receive a serious diagnosis. "I've taken care of cancer patients for a long time. I have never taken care of a doctor who didn't get a second opinion." Vincent T. DeVita, Jr. M. D. Fromer Director, National Cancer Institiute, as quoted in Fighting Cancer by Annette and Richard Bloch.
• Asking for a second opinion does not have to imply a negative--instead it means that you want to investigate all possible treatment options.
• Some health care insurance plans require a second opinion.
• Medical knowledge in speciality areas is increasing at an amazing rate--you need to learn what other specialists can tell you about how they would treat your particular type of cancer.
• Typically you are not putting yourself in danger if you take 1-2 weeks to gather more information. Emergency treatment is a very different situation and will likely present itself in a way that makes it very clear that a decision needs to be made quickly.
• Getting a second opinion is considered a standard practice. If your physician is offended by this, then you should wonder why.
  

Your physician or someone one in the office should be able to direct you to other qualified doctors in the medical speciality area. The office should even be able to help you set up this appointment in a timely fashion.

Do this for yourself. Get a second opinion.

Managing cancer's side effects--staying ahead of the problems

Managing pain has become a much more effective process. The variety and types of drugs have greatly expanded and improved. The methods of dispensing the medicine has also improved, for example you can receive relief from pills, via your IV or through a patch.

I think that one of the most effective and important improvements in pain management is in the way we think about controlling the pain. The emphasis is on staying ahead of the pain -- not waiting for the pain to come to you. Taking pain medications at regular intervals is the best way to accomplish this goal. The idea is to prevent pain's physical, chemical and emotional changes from ever getting a foothold in your life.

The lesson we learned about preventing and controlling pain should be applied to other areas of your life too--especially while you are dealing with cancer treatments.

Here are some ideas about how you can stay ahead of the most likely problem areas:

• HYDRATION-- Stay hydrated--inside and out. Keep a water bottle near you--sip from it through out the day. Have regularly scheduled tea or juice breaks. Use smaller cups and glasses so that you aren't overwhelmed by portion sizes. Now that fall is here consider using a room humidifier. It will help your throat, nose and skin.
  
• NUTRITION--Eat 6-8 small meals a day. Serve small portions on small plates. Silverware can give off a metallic taste so get some fun, colorful, sturdy plastic knives, forks and spoons. Don't eat in bed. Sit at a table for each meal or snack. Try to remain in an upright position for 10-15 or 30 minutes after you eat.
  
• CONSTIPATION--not the most glamorous of topics, but hey, we're friends, we can talk about anything. Constipation is going to happen--the combination of taking pain meds, not being as active, changing eating patterns to name a few will wreak havoc on your system. Don't wait to deal with the uncomfortable side effects of constipation. Take all the meds that your medical team suggests--stool softeners, extra fiber pills etc. Also try adding 1 or two prunes to each meal. Add prune juice to your smoothies. Get up and walk around several times each day.
  
• EXERCISE--try to get outside and walk. It doesn't have to be far. Experiencing the fresh air and walking, even a short distance will be beneficial. Consider using exercise bands to keep your muscles in shape. Stretching exercises are good. Many exercise programs have been modified so that you can do them sitting in a chair. Consult with your health care team and find the right exercise program for you.
• SCHEDULE FUN--establish a movie night with family and friends. Even if you think you can't last the entire length of the film--give it a try. Have a film festival composed of the great comedies. Laugh and enjoy. In addition to giving you something to look forward to it offers your family and friends a way to participate. They can suggest and procure the movies, they can organize the room and determine the meal. It is a great way to spend a weekend evening. And of course if you are feeling like it you can see this movie at a friend's house or at a theater.
• KEEP A JOURNAL--this is a wonderful way to exercise some control over the crazy and frightening things that are happening to you. Keep track of your journey--but don't just record the negatives--try keeping a "gratitude journal."

Be proactive. You are the one in control. Dealing with cancer can make you feel powerless, but you don't have to settle for that. Staying ahead of the of the side effects will help you reclaim control of your body, mind and spirit.