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.
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Monday, July 28, 2008
The Bitch Advocate (Formerly Known as the Squeaky Wheel)
Sunday, July 20, 2008
Know Thyself
Here is a philosophical question: If one goes to see the Dalai Lama speak at a sold-out Kimmel Center appearance, but scams her way in by asking old co-workers to spot her a ticket, does that cancel out the spiritual value of the pilgrimage? Does playing the cancer card give a person bad karma? Do Buddhists even believe in karma?
Karma seems more up the alley of the yogi whose meditation class last Monday night was attended by a woman who had never been there before. The intense but welcoming Yogi Shanti wanted to know what the woman was looking for, which was a very good question indeed, even if somewhat horrifying when asked in front of everybody else in the room. The seeker didn’t have a good answer, but she had ponied up the $18 fee for this one and wasn’t about to wimp out so she mumbled something about “stress relief.” This appeared to be the wrong answer.
Clearly the seeker had wandered off her regular path. Her preferred yoga class is taught by an ex-journalist friend whose old beat included some of the most heinous murders in Philadelphia. That yogi has retained a healthy bit of newsroom cynicism, and every now and then throws Talk To The Hand pose in with downward facing dog and the sun salutations. Sometimes she can even be persuaded to go out for Jameson's and gossip after class, the better to exercise the sarcasm chakra.
Stress and anxiety spiked this week. With my last chemo treatment a couple weeks behind me, I was feeling physically better, but the looming date with Dr. X and his extreme X-Ray agenda had jump-started my nerves. I’m not really an X-Games kind of girl, no matter how fast my mind is racing.
Desperate for a rest stop, I opened the book that Yogi Shanti gave me. “The purpose of meditation is to know thyself,” reads the first line, knowing thyself being a prerequisite for knowing and communing with the Divine.
Know thyself, that dictum of the ancient Greeks, has been an oft-repeated mantra during my last couple years of mostly self-imposed life changes. “You’ll really get to know yourself,” people would say. “You’ll find out what you’re made of.” Knowing yourself is a worthy quest, right up there with one of my other personal goals: being known.
I know myself well enough to know that for me, high stress equals hair-trigger emotions. This might explain why I can cross an ocean in a 30-foot sailboat, but an unkind remark shakes my confidence to the core. Better to channel all that stress into rage in order to keep some modicum of control over the situation, the situation currently being preparation for radiation therapy.
The morning of my prep session, I followed my standard chemotherapy regimen, i.e. lying in bed, staring at the clock and calculating how long I could stay under the covers and still make it to the cancer center within a reasonable period of lateness. (The answer, from my mother’s apartment in Center City, being 7:38 a.m. for an 8 o’clock appointment.) I arrived at the Bodine Center for Cancer Treatment at Thomas Jefferson University Hospital at 8:04. Radiation oncology is in the basement.
Things started out okay, despite the nightmare of the one-size-fits-no-one-except-maybe-the-XXXL-guy-in-the-corner radiation gown. This is not about fashion, folks, I’m talking about decency. There are acres of common area in The Basement and there was no way to tie this thing without leaving gaping holes and I am hardly the most modest person on the planet, as anyone who happened to be at the Willy T on my 40th birthday can attest. For anyone more decorous, this would have to be humiliating.
I double wrapped the thing around myself, knotted it like a sarong, and stepped out of the ladies locker room into the first waiting area. In addition to the plainclothes waiters, there were two men dressed like me, one bald, one wearing a baseball cap. I gave them a sheepish grin, resisting the urge to curtsy, or maybe do a pirouette.
“I forgot the matching heels,” I said as I walked past them.
The bald guy laughed. Apparently radiation was going to be as hilarious as the rest of cancer.
“At least now you know what color they are so next time you can wear a head scarf that doesn’t clash,” baseball hat guy called after me, as I began the two-mile walk down the hall to the nurse’s station.
I didn’t know I was so attached to the ugly gown until I was required to take it off and lie down, naked except for my underpants and flip-flops, on the cold CAT scan table. The air conditioning was on high. Three women (nurses? technicians?) were making dozens of minute adjustments to my position. They tilted my chin up a little, pushed my shoulders back, twisted my hips. They taped my breasts out to the sides and covered the lower part of my chest with a heavy sandbag, efforts to protect those areas from the radiation field, which would target my neck and chest.
Once happy with the position, it was time to make the mask. A large, flat piece of plastic with holes to breathe is heated up and placed over you. “Keep your eyes closed,” said one of the women. “It will feel like a hot, wet towel over your face.” I tried to imagine some exotic spa treatment but the smell of plastic and chemicals just doesn’t compete with lavender. While the women deftly molded the plastic around me, I tried to contemplate my Dalai Lama quandary but the present moment is less Zen, more Twilight Zone. What did Dr. X say? Each radiation treatment was equal to how many CAT scans? 150?
Just then I heard Dr. X’s voice. “How are you Miss Smith?” What is he, a dentist? He knows I can’t speak, or even blink my eyes with a yes or no answer, at this moment. A friend later suggested a hand gesture might have been an acceptable response given the circumstances, but even they are in a particular position, and the nurses can’t stress enough how important it is to remain perfectly still because, you know, one false move and the wrong part of your body gets blasted with some lethal amount of radiation.
I got a CAT scan, which the doctor will use to help determine exactly where the radiation will go, and pretty soon I was finished and the nurse handed me an appointment card for next week when they will simulate an actual treatment. She casually added that they might start the treatment for real that day, which was not at all my understanding from my last conversation with Dr. X, but he was nowhere to be found.
Then, just as I was starting to freak out, and forcing myself to do that anxiety-to-anger thing, I learned that there’d been a scheduling mix up which meant waiting four more hours for my second scan. This scuttled my plans to sneak in and hear the Dalai Lama, but on the upside (a) potentially preserved my karma and (b) gave me someone appropriate to direct my rage at: Brian, the guy with the misfortune to deliver this news.
Is it a big deal, a delayed scan? No. But in the fragile balance of this wacky cancer world where daily survival means holding the big issues at bay, it’s the little injustices—scheduling conflicts, a minor misunderstanding—that sometimes bring my walls tumbling down. It’s like those “quality of life” crimes they’re always talking about at city hall. Sure, that double homicide on the drug corner a few blocks away is serious business, but it’s those damn drunk kids who keep pissing on your lawn after the ball game that are really wearing you down.
Brian must have good karma because he smiled through our entire exchange, conducted with absolute sangfroid on his part, and in the end I just pushed all the rage down and cried anyway.
Know thyself.
I always thought that by this age, wife and mother would be part of who I was. Quitting my job took away another label. If you ask me if I ever defined myself by my occupation, I would say no, although for many years, I often said, “I am a reporter.” Conversely, I never defined myself by my last full-time job—waitressing—even though other people did. (“If you’re such a good writer, how come you’re a waitress?”) Traveling alone stripped away a few more layers. (Where do I want to go? What do I want to do? How am I going to make this work by myself?) Just when a clear picture of what’s going on inside was finally starting to emerge I walk past a mirror and—quite literally—do not recognize myself.
So here I am, sitting in another recliner with another IV and typing away because writing is part of what I do to try to figure things out and God knows it’s hard to meditate when they keep sticking you with needles. Before I can get the PET scan, which will be fused with the CAT scan to determine the radiation dose, we have to wait for the chemicals I’m drinking to kick in. (Barium Sulfate Suspension, "Banana Smoothie Flavor." What the fuck is barium, anyway? I seem to remember seeing it on the periodic table of the elements that Fun Kim sent me as a joke from Oregon where she is student teaching at a high school, serving her sentence for the sins of Pamplona.) My talisman for the afternoon is a piece of cloth touched to the relics of St. Theresa, pressed into my palm by my Mother, who also informed me that our neighbor would be praying the rosary for me that day.
I am overwhelmed by the number of people who pray for me from devout Italian Catholic family members to a dear friend who insists her mother is a member of Our Lady’s Heavenly Bowling Team. I’ve done my share of talking to God in the past few years—mostly in magnificent European churches while the mass was going on in some language I didn’t understand, or in remote, natural locations involving expansive sky and sea—but I’m not as comfortable with prayer in the traditional sense.
It takes me a long time to count my blessings. By the time I give thanks for all the amazing people in my life, and ask God to take care of their needs, and then pray for the homeless and the nation’s leaders, and all the people with bad shoes (that’s a joke, for the readers who think my hilarious cancer posts are getting too serious), and all the cancer patients who are much worse off than I am—and I know there are so, so many of them—and then move on to the impoverished children in Third World countries, I’m exhausted, not to mention fraught with worry about all the people I might have forgotten. “Shit, I didn’t even get to world peace,” is the last thought in my head before I fall asleep.
When I do get around to it, I ask for strength and love but, oddly, never to be healed or cured. That’s always felt like a deal between me and my body, somehow wrapped up in whatever else it is that ails me.
It is natural, almost cliché, to become more of a spiritual seeker when faced with serious illness and death, both of which have crossed my path in the last 8 months. My diagnosis came shortly after my father’s horrible and sad death from metastatic lung cancer—horrible because of the disease, sad because of the circumstances surrounding his death, circumstances dictated in large part by how he had chosen to live.
These days, my religion is a bit of a Chinese lunch buffet. An amalgam of East and West. A little insight from Atheist Lover or Cynical Yogi. A helping of inspiration from Fake Redhead or a woman named Mean, who is anything but. Angels come in many forms. Mrs. Jagger has been known to quote a Stones song or two (“You can’t always get what you want…”)
For the record, I always feel like I get what I need. And I am willing to accept that there is something I’m supposed to learn from all of this, something I missed, even with all the re-evaluating of the past few years. Which means I’ll probably be spending more time at Cynical Yogi’s studio, where I can leave some negativity at the door, then go home and work the rest out on paper.
I like a little edge with my enlightenment, an attitude that says sometimes you have to grab the Universe by its you-know-what and shake some truth out of it, and sometimes the truth isn’t pretty. Sometimes it’s hard or scary. Sometimes it’s just whiny, self-indulgent or self-pitying, unreasonable or un-p.c.—which doesn’t seem very enlightened at all—but it’s what I feel on some days, and I am not afraid to own it.
I’ll pray for strength to be a diligent student. When you don’t have all the answers, you ought to keep studying. Especially when you’re paying for the class.
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Thursday, July 17, 2008
Tuesday, July 8, 2008
Is That All There Is?
Dr. R thinks it’s time we start seeing other people. In stereotypical bad break-up timing, he delivered this news on a Friday, just before the weekend, after making me wait an hour to see him.
No, he informed me, he didn’t want to keep that PET scan date we had been planning for a month, and he thought it best to cancel our weekly blood test rendezvous. Better just to finish up the chemotherapy and then go our separate ways for awhile.
Except for this not entirely unexpected development, the last day of chemo—June 27—was utterly uneventful. After an anxious build-up, the 8th and final treatment went so smoothly, it barely registered. I had expected to write through most of it, raging about headaches and chemo farts and the creepy way my veins feel, like they’re just going to burst and send blood spurting all over. I thought I would detail every last minute, but once I was in the chair, it was too much effort to open my laptop. Maybe I’m suffering from chemo brain after all.
Since Friday was not my regular day (treatment was pushed back a few days because I was so sick the last time around), I didn’t know any of the other people hooked up to IVs. There were two women, both of whom were sleeping, and one man, accompanied by his wife, who was getting his first treatment. The Little Infusion Room on the 13th Floor was quiet. I listened to music and chatted with my chemo date, who brought me lunch and stayed until the end, which came even sooner than expected when Kristin, the nurse, unhooked me before the last saline drip was finished, declaring “you don’t need it.” I got up, gathered my things, hugged Debbie, the nurse who usually administers my chemo, and that was it. It felt like the last day at some stupid summer job you didn’t like all that much. You met a few nice people, but other than that, the experience was entirely forgettable. (What was the name of that funny lady? You know, the one at the front desk at the place I worked that summer in Philly? Remember? The summer that sucked?)
I had one last, fleeting thought that I should wish the new guy luck and offer some words of encouragement, as someone had for me on my first day of treatment, but he was in the bathroom when I was wrapping up and if there’s one thing I’d learned in my four months of chemo it’s that you don’t wait around for that stuff. When you’re done, you get the hell out of there, which I did, without looking back, without making my usual stop at reception to schedule the next appointment with Dr. R, the erstwhile main man in my life.
Which is how I ended up, five days later, sitting in the basement of the hospital--where they keep all the scary equipment--and sizing up the proposal of Dr. X.
It is not a blind date. I had met Dr. X, the cancerologist specializing in radiation therapy, once before, about five months ago, and I liked him. He was the first one to explain what the treatment for Hodgkin’s would entail, calmly going through all the horrific details and ramifications while my head spinned. He was also the first one to use the word cancer. Isn’t that hilarious? The whole first month of this process, from discovering the lump in my neck in January through surgery and diagnosis in February, none of the experts ever used the word cancer, not even the surgeon, not even when he was referring me to oncology.
Now Dr. X and I are again face to face or, more precisely, knee to knee. Dr. X has pulled his chair up very close and is looking me directly in the eye and gently running through the list of potential side effects of radiation which include burning skin, extreme fatigue and almost certain loss of thyroid function and range in severity from sore throat to heart (why is the heart always in the balance?) and lung problems to—my personal favorite—other cancers. Breast cancer. Thyroid cancer. Leukemia. Other lymphomas.
These are my choices?
The latest scans indicate the chemo is doing its job. The parts of my body that were glowing with cancer cells aren’t glowing anymore. The radiation, Dr. X explains, is designed to ensure that all the cancer is killed, even, or, I suppose, especially, the cancer you can’t see. If I don’t get the radiation and I start glowing with Hodgkin’s again, they can still treat it (Good News!) but it’s harder: heavy doses of radiation and even heavier blasts of chemo, maybe even some other things involving phrases like bone marrow and stem cell transplant.
Dr. X is very complimentary. He compliments my scarf. (Gucci.) He tells me I look good. I roll my eyes. He asks me for the third time when I completed my last cycle of chemo. “Friday,” I tell him. “Friday, five days ago?” Yes. He looks surprised. “Most people, five days after chemo…” He doesn’t finish the sentence. Yeah, yeah, yeah. So I'm the Chemo Queen. Whatever.
Dr. X wants a committed relationship. Unlike Dr. R and his casual every-other-week dates, he’ll insist on seeing me every day if we decide to get involved.
These are my choices.
A bubble bath and good book never looked so appealing.
###
