The Assertive Cancer Patient

Soapbox No. 1: Whose Disease Is This?

I'm the one with cancer. It's my disease, and I get to make the decisions about how I'm going to live with this disease and what treatments I will agree to do.

My doctors, bless them, understand this. But many friends and family members don't. They try to tell me what I should do, despite the fact that I have never asked for their advice.

One relative, who happens to sell high-priced vitamins, pushed me to add her brand of vitamins to my regimen while I was in chemotherapy. When I told her that my doctor asked me not to take vitamins during chemo, because they may interfere with its effectiveness, she said, "Doctors don't know what they are talking about."

In fact, my doctor does know what he is talking about. He and a well-known local naturopath have collaborated on research on this subject.

But that's not really the point. It's my disease. I get to make the decisions. If I want to eat peach pits and douse myself with holy water from Lourdes, it's my decision.

Not too long ago, I was battling with a friend who thinks she knows better than I do about my life and my cancer treatment. I had told my friends in an e-mail explaining a change in my treatment, "I do not want to discuss the treatment that I will be getting, reasons for the treatment, or anything related to that. I am satisfied with the recommendations of my doctors, and find it exhausting to talk about. . . . "
Despite that message, this friend keeps trying to tell me what to do.

Now you might be thinking that I should be grateful for the many friends I have who are concerned about me and want to help. Yes, I am grateful, but being badgered to revisit decisions that I have made and am comfortable with is no help at all.

True friends listen, offer support, and only give their opinions when asked.

@ Jeanne Sather 2006

Soapbox No. 2: Keep Your Fear to Yourself

I've been living with cancer for a long time--eight years now. I've experienced a lot of fear during that time, but I think I've done a pretty good job of taking that fear and making lemonade out of it. I think I cope pretty well with my feelings, and I'm always available to my children, to help with whatever problems or fears they might have.

But I cannot cope with other people's fears. It's astonishing how often friends and family come to me--the person who is sick--to help them feel better about the fact that I have cancer and may die soon.

I have literally spent hours on the phone with my anxious and grieving friends, telling them that it's OK, that I will be fine . . . and when the conversation is over, I am exhausted.

An offshoot of this is telling a person with cancer all your personal cancer horror stories. Don't do this. This is unkind.

It is a common coping mechanism to automatically mention that your father or mother or brother died of cancer when confronted with someone who has the disease. My response to this is, "My father died of cancer is not a greeting."

Don't say it.

I'm not suggesting that the people who care about me don't need to vent their emotions, including their fear, but not to me. I can't handle it.

@ Jeanne Sather 2006

Soapbox No. 3: The Language of Cancer

Let's start with the cliches: "Died after a long and courageous battle with cancer." Everyone who dies of cancer is automatically brave. Read the obituaries, you'll see what I mean.

Notice all the military metaphors and male imagery? Why is that?

It's gotten so that I'm afraid to be a coward. It might show up in my obituary: "Jeanne Sather died Wednesday after a brief, cowardly skirmish with cancer."

I've been working on this one for almost as long as I have had cancer, which is to say eight years of trying to come up with an alternative to the cliche "battle with cancer," and I haven't found a great one yet. Help, anyone?

In the meantime, I've written my own obituary (which says I DIED, not "passed away," "left us," or "passed over to the other side") and have planned my own funeral.

To read more on this topic, see this article in the Seattle P-I, which includes an interview with me (and a flattering photo).

Read: To be dead sure you get the last word, write your own obit

And for more thoughts on death, obituaries, and the language of cancer, from one of my favorite blogs, As the Tumor Turns:
We're All Buddies on This Bus

@ Jeanne Sather 2006

Soapbox No. 4: NIMBY to the Max

Clinical trials are essential to cancer research. Without clinical trials, new drugs and treatments cannot be approved. No matter how promising a new treatment looks when tested with lab animals, it cannot be used to treat people until it has been carefully evaluated through the several phases of a clinical trial.

Most Americans understand this, and the majority of people surveyed on this issue say that no drugs should be given to people until they have been thoroughly tested for safety and effectiveness in human subjects.

But here's the kicker: The majority of Americans, something like 80 percent, say drugs must be tested on humans, but only about 4 or 5 percent of adult cancer patients actually volunteer to take part in clinical trials themselves.

This is NIMBY-ism on an incredible scale. What do these people (who want the newest and best cancer treatments and want them yesterday) think researchers are going to do, test new drugs on people in the Third World? (Sadly, the answer is probably yes.)

Those of you who don't have cancer aren't off the hook, either. Sign up for a prevention trial, and do your part for humankind.

Having said this, the choice to participate in a clinical trial can be a difficult one.

In addition, I think cancer patients who participate in clinical trials should be given a stipend to compensate them for their time and for the risks they are taking. I'll be writing more on this topic.

@ Jeanne Sather 2006

Soapbox No. 5: Gag Me With a Pink Ribbon

I hate them. I really do. I don't understand what they are for--support and solidarity, something like that, but I'm not getting that from a little twist of pink metal pretending to be a ribbon.

Instead of pink ribbons, I'd rather have national health insurance or any health insurance plan that insures SICK people. The way things are now, if you are young and healthy, you can get health insurance at a reasonable cost. If you are old or, God forbid, sick, forget it.

If you want to support people with cancer, forget the ribbon and lobby for national health care. Or for a state health insurance plan that is open to everyone, rich and poor, sick and well.

When someone without health insurance goes to a public hospital, and can't pay for treatment,the hospital will write off the bill. One visit to the emergency room by an uninsured person can easily cost the same as one year of health insurance premiums, if not more.

Who makes up the difference when a public hospital writes off a bill? You and me, the taxpayers.

Pink Junk
Where the pink-ribbon merchandising really runs wild is in the for-profit sector. Retailers offer pink-themed merchandise, then donate only a tiny share of the profits to cancer research. I'm tripping over these products everywhere I go as October approaches. At the pet store, a pink dog collar printed with pink ribbons sells for $9.99; the tag says 30 cents (30 cents!) from the sale of this product will be donated to the Susan G. Komen Breast Cancer Foundation, the 800-pound gorilla of cause marketing.

But wait, there's more! At the tea shop, a pink tin of candy. At the supermarket, pink M&Ms—buy the M&Ms for $2.99, and Komen gets 50 cents. (Three dollars for an 8-ounce package amounts to four times the usual price, based on volume.) Other recent pink products: scarves, clothing, and nail polish.

Nail polish? All of this just encourages us to indulge in retail therapy while trivializing a very serious disease. This is not about raising money for cancer research; this is about companies selling you stuff you don't need, just to make a profit. Don't fall for it.

@ Jeanne Sather 2006

Soapbox No. 6: MIA Doctors

I call them “MIA doctors”—doctors who go missing in action when their patients are dying.

Cancer patients do not expect the doctor who has cared for them throughout their illness to turn and walk away once they are terminally ill. But that is what happens more often than not. The doctor hands them off to hospice for palliative care or sends them home to die, and that’s it: These dying patients never see or hear from their doctors again. Often, during their last appointment oncologists don’t even say goodbye or acknowledge that they will not be seeing the patient again.

When my friend Surain af Sandeberg was dying of cancer in the spring of 2002, her husband Robert told me how distressed he was that they had not heard from Surain’s doctor since her last appointment.

Surain had metastatic breast cancer. Late in 2001 her doctor discovered that the cancer had spread to her brain, and she had radiation therapy to the head. Then cancer was found in her upper spine, and in January 2002 Surain’s doctor told her that it was unlikely further treatment would work.

Surain went home to the houseboat on Seattle’s Lake Union where she had lived with Robert since 1994, and a group of friends helped Robert care for her during the remaining months of her life. But during this time, and even at the time of Surain’s death in March, her doctor never once contacted her or her husband. She never called; she never sent a note.

“It’s is definitely true that [the doctor] disappeared completely after she told us that Surain had one to two months left to live,” says Rain Robert af Sandeberg (who has since added his wife’s nickname to his name). “Surain and I were surprised by that—I might say a bit upset.

“Surain liked her doctor very much. She was a famous doctor, yet she seemed to give preference to Surain’s case and gave her quick appointments when it was possible in her busy schedule.”

I was one of the people who helped care for Surain at the end of her life, and I was shocked when Robert told me Surain’s doctor had gone MIA. At that time I had no idea that this was standard practice for most oncologists. Once they feel they can do nothing more for the patient medically, they hand them off to hospice, to a social worker or pastor, or just send them home to die.

Since then, I have heard a number of similar stories, and each time I hear one, my outrage grows. These dying patients are not asking for a lot: a phone call, a chance to say goodbye and thank you, some acknowledgement of the relationship they have had with their doctor.

Read about one Seattle oncologist who is trying to change things (I was interviewed for this story): Discovering the power of goodbye

@ Jeanne Sather 2006