The Bitch Advocate (Formerly Known as the Squeaky Wheel)

My friend Ellen has threatened to stop reading my blog if I don’t start mentioning her again. “From now on, I’m not going to read any stories or articles that aren’t about me,” she informed me one day. “I just don’t have that kind of time.”

I was about to tell her that she should be more supportive because, you know, I have cancer, when I remembered that she has been the person most often reminding me that I have cancer. “You have CANCER!” she would console me, when I worried about slacking off at work. “YOU have CANCER!” she would repeat, when I was upset about another sick friend.

You hear a lot about how you need to be your own advocate in our modern health care “system.” What you really need is someone who follows you around like a faithful, bomb-sniffing dog, constantly prowling for little threats to your health and safety, ready to pounce when necessary: SHE HAS CANCER! LEAVE HER ALONE! ANSWER HER QUESTION! GET HER WHAT SHE NEEDS! STAT! GRRRR!!

A sailing buddy who recently spent six weeks in the hospital after “routine” surgery has another term for this: The Bitch Advocate. In his case, it’s his wife. Respected surgeons apparently run for cover when they see her coming down the hall. Clearly, I need a wife.


Ellen is an excellent candidate for Bitch Advocate, but she really doesn’t have that kind of time. My mother, my main sidekick at most of my appointments, is supportive and asks good questions, but she doesn’t fall into the bitch category. Ironically, I think I’d be a great Bitch Advocate… for somebody else. I was competent in the beginning, shouting into my cell phone while standing half-naked in the doctor’s office and demanding to speak to someone who knew something, but that was back in January. I’ve lost a little steam since then.

“Why is it so hard to stand up for myself?” I whined to Single Girl #1 and Single Girl #2 after my non-appointment with Dr. X last week, the one where I didn’t even get to see the doctor, the one I left on the brink of tears.

My girlfriends, sharing my status in possessing erratic emergency contact information, were empathetic. We all talk tough but those hospital gowns have the effect of a muzzle.

“I’ll come with you next week and yell at anybody you want,” offered SG #1.

“Yeah,” said SG #2. “If they don’t give you what you need, we will MESS THEM UP.”

Inspired, I vow to be stronger at my next appointment, go in armed with a list of questions. What the hell happened last time, anyway? I know my stuff. I might have followed Dr. Lisa’s advice to go shoe shopping instead of Googling after my diagnosis, but my reporter skills have been working overtime since then. I have read books and researched online. I have interviewed patients and professionals. I have become an expert in Hodgkin’s Lymphoma. I have done my homework and made informed decisions about my treatment so far. So why does it now feel like I’m on a runaway train?

I consult the National Cancer Institute’s Radiation Therapy and You booklet for tips on talking to the doctor. Here are the suggested questions, complete with space to write down the doctor’s response:

What kind of radiation therapy will I get?

How can radiation therapy help?

How many weeks will my course of radiation therapy last?

What kind of side effects should I expect during my course of radiation therapy?

What can I do to manage these side effects?
These are rookie questions. Anyone who skims the NCI handouts knows these answers.

Here are my questions:

What dose of radiation am I getting? 30 gray? 40 gray? Do you consider this low-dose radiation? Am I getting involved field radiation therapy (IFRT) or mantle field? How do you determine the length of treatment? Why is radiation better than two more cycles of chemo?

If my latest tests show I’m in remission, how do you know how much more treatment I need for extra insurance?

Last time I saw you, you said 30 different doctors would recommend 30 different courses of treatment. Really?

What are the chances radiation will give me breast cancer? Lung cancer? Thyroid cancer? Heart disease?

Will I ever menstruate again? What’s up with my toenails falling out?

When will you show me my latest scans?

This last one fascinates me. On TV, the doctor always holds up an X-ray, points to some spots, and announces, “There’s the cancer!” This doesn’t happen in real life, at least not in mine. I have had thousands and thousands of dollars of PET scans, CAT scans and X-rays and not once has anyone shown me what’s on them without my expressly pushing for it. (I always request CDs to take home, but they are indecipherable if you don’t know what you’re looking at.) Also, no one directly involved with my care ever used the word “cancer” until I was sitting in the oncology wing of the hospital, which was four doctors, one surgery and numerous tests into this whole process.

I am reviewing these questions in my head when I arrive for my appointment Thursday, the final radiation planning session, but once again, instead of seeing the doctor first, I am whisked into another scary room of The Basement and greeted by four new faces.

“I’m Renee,” I hear, as they start moving me around on the table. “I’m Fran. And that’s Danielle and Calisa.”

“Who are you guys?” I ask, as they fit the mask molded last week over my face. “You’re all different from the people I saw last time.”

“That was the CAT scan team. We’re radiation therapists.”

“The people who actually deliver the radiation treatments?”

“Yes.”

“So you’re the people I have to be really nice to.”

“This girl is smart!”

“Is Dr. X coming in for this?”

“Yes, but you don’t have to be nice to him. You start treatment Monday, right?”

“Depends on how Dr. X answers my 17 questions.”

I hear Dr. X come in, talking sci-fi babble, all numbers and formulas, to his resident. I’m an expert, but this stuff is over my head.

“Dr. X, we need to talk, I say.”

“What’s wrong?

“Nothing.”

“She just has some questions,” Renee adds, helpfully.

I spend the next 20 minutes or so lying on the table while the team takes “port films,” more X-rays used to tweak the exact spots the radiation will hit. Then all the prep work is finished. Radiation therapy can begin. Ready or not.

A few minutes later, I’m back in the examining room, still in my gown, and waiting to talk to Dr. X. I choose to sit on the examining table. I know Dr. X will sit in a chair, and this gives me some height, so I can look down at him while going through my list of worries. (Do not laugh at or underestimate this technique until you’ve tried it.)

I got through my list. Dr. X patiently addressed all my concerns, although I confess, the entire time I felt like I was imposing, asking too much, which is ridiculous, I know, but it was effort to ask every last question I had scribbled in my notebook, and I’m a professional interviewer, the proverbial squeaky wheel. What does the average person do? Just say, “Oh, okay,” and go with the flow?

In the end, the two most resonant arguments came from two other girlfriends. The first was from a sailor on St. John, most famous for goading me into a long-distance voyage on a very small boat by proclaiming me a “candy ass” if I chickened out. Too bad she lives in the Caribbean; she is the prototype Bitch Advocate.

For most of our discussion, she took the devil’s advocate “the risk of breast cancer might outweigh the benefits of radiation” position. After all, breast cancer and ovarian cancer, they’re the scary cancers, right? The ones that kill so many women. Not like this bullshit cancer I have. “Then again,” added my friend, “you don’t want to be the schmuck who gets the recurrence of Hodgkin’s because you didn’t get the radiation,” a conclusion that can also be distilled as: “If I get the radiation and end up with a secondary cancer, I can blame the doctor; but if I don’t get the radiation, and the Hodgkin’s comes back, I can only blame myself.” Again, don’t mock this thinking until you digest it. Psychology is more than half the battle in fighting this thing.

The second argument came from a good friend’s sister, whom I’ve never met, but who had been treated for Hodgkin’s last year. For six months, I’ve avoided calling her, despite my friend’s insistence that she’d be a good person to talk to. I knew she had had a rough go at chemo, and I didn’t want to hear those stories. But last week, out of the blue, she called me.

I had just dropped off my Mom after attending an information session on radiation at Jefferson, and was heading down the shore in the Popemobile, the black Chevy Cavalier owned by my uncle, a retired priest. When the phone rang, I pulled over on a side street not far from his old parish, and listened to my friend’s sweet little sister, young wife and mother of three explain why she opted for radiation, how she wanted to do everything possible to make sure this deadly disease was no longer a threat to her life, how she reasoned she’d deal with secondary cancer and other long-term side effects if and when they materialized. And right there on a little dead-end street in South Philadelphia, I had an epiphany:

I have cancer.

For seven months I’ve been dealing with this, trying to make good decisions, while still living my life and keeping my sense of humor. I know it’s serious, but there’s also been this underlying drumbeat of “It’s not a big deal,” from the surgeon who diagnosed me and pronounced it “good news” to the oncologists who smile and tell you they can cure you (“cure” meaning you’ll be alive in five years) to the people, well-intentioned or otherwise, who call you lucky and remind you how much worse it could be.

“It is a big deal,” says the voice on the other end of the phone.

I have cancer. People die from Hodgkin’s. Sure the odds of survival are good, but they’re good because they blast the shit out of you to cure you, killing the cancer and leaving you with a whole new set of potentially fatal problems. As for the odds, well the odds say I shouldn’t have gotten this in the first place. The odds say no one should. Hodgkin’s is rare. I don’t fit the age or gender demographic. There will be 8,220 new cases in the U.S. this year. 1,350 people will die from it. You do the math. Okay, I’ll do the math: the odds of dying are 1 in 16, which doesn’t seem so bad until you consider the odds of being diagnosed with it this year were about 1 in 36,000.

I start radiation today. I think I’m ready. The bitch is back.

###