Chemo–What we expect versus what we get…

Was browsing this blog that I really like, and saw this report;

Most falsely believe chemo is curative
According to a study in the New England Journal of Medicine although chemotherapy is the primary treatment for patients with lung and colorectal cancer, it is not curative.

In an American national survey of 1193 advanced-stage patients, 69% of patients with lung cancer and 81% of those with colorectal cancer misunderstood the intent of chemotherapy, mistakenly believed that chemotherapy might cure their disease.

This seemed a little crazy to me, so of course I looked up the original New England Journal of Medicine article.  If you are feeling geeky, you can read it here:  NEJM Article. (It should download as a PDF.)

As you might expect, the rate of misunderstanding was greater within non-white ethnic groups. I’d guess perhaps there were some language barriers (doctors often throw around the term “palliative,” and for a long time, I wasn’t sure what “palliative” really meant). Also, the way serious illness is treated varies by culture.  BUT the rate for white (and I assume English as a first language) patients who thought chemo might cure their Stage 4 colorectal cancer was still 74%, which is high.  Consider: For every demographic, more than half of patients with a terminal illness mistakenly believed chemo treatments might cure them.

And, as you might also expect, the rate of misunderstanding among patients who had lower levels of education was slightly greater…but here again, even among patients who had a college degree or higher 75% still thought chemo might cure their Stage 4 colorectal cancer.

The article brings up several issues to consider and the researchers offer up ideas why this might be. I was interested in the idea that while the oncologists do communicate the truth of the situation to the patients, there tends to be a very quick transition from discussion of the prognosis to discussion of treatment.  I have experienced this myself, where a doctor–I think with all good intent– quickly steers away from the emotionality of a diagnosis, and toward the logistics of treatment.  As soon as we can start talking about the pros and cons of various options and setting up a schedule etc., it starts to feel like we are “doing something.” This can be comforting and work as a coping mechanism to get you through that first appointment, but the authors here (based on yet another study ) propose that this focus on treatment can lead to false optimism–and I have a tendency to agree.

I can imagine there is a great temptation to bolster a patient’s morale. And I even believe that good morale can help extend someone’s life…but this kind of misunderstanding ultimately takes control from the patient. 

If a chemo is going to extend your life by a few months, but you’re going to feel terrible for much of that time, do you want to it?  It seems like people should get to make that choice.  People should also have time to come to terms with the end of life, to do what things they can to put their affairs in order.  Finally, for those who are truly committed to trying to beat the odds– given the information that conventional means are not likely to cure they might want to try alternative means to prolong life–be it diet, meditation or whatever. And regardless of outcome, it could be argued that a by-product of these alternative practices could be a better life–or a more peaceful end of life.

It’a All Fun and Games Until Someone Loses… a Breast

So the other day on Facebook, I saw that my friend “Amanda” was going to Costa Rica for 11 months. I congratulated her in the comments section. The next day, “Jodie” wrote that she was moving to London for two years, and some time later “Kris” said she’d be in the Dominican Republic for three months.

I was happy for them, but was also a little…daunted. Here I was, glued to my day job, trying to write, addicted to Bejeweled Blitz even as I daydream about having a more meaningful life—doing more, being better somehow. And here my friends were actually doing it. Their statuses didn’t provide details, but I imagined: Saving the rainforest? Writing novels? Building houses for orphans?

And then I got a direct message from Amanda saying, “I’m not really going to Costa Rica.” She forwarded a message that explained it all.  It began:

It’s that time of year again…support of breast cancer awareness!

–and then went on to describe the “game” –a self-professed follow up the classic “what color is you bra” meme of 2010, and others that followed—which would build solidarity among women and show the world what we could accomplish with just our Facebook statuses.

For the 2013 version, I should select a place (from a list) according to the month I was born, and then match the day I was born to a number of months so that,

 If your birthday is 21st January, YOUR STATUS SHOULD READ: “I am going to Mexico for 21 months.

I should then forward these secret instructions only to my girlfriends, and not tell any males what the status means. And finally, the message implored:

Please do it, don’t be a spoil sport, show your awareness!!!

Oh. So no rainforests, no novels. Maybe I should feel relieved. They were just playing a game.  A game that I could play too.  In fact, a game I needed to play, because even if I’m an underachieving flash-game addict, at least I’m not a spoil sport. Spoil sports are the worst, aren’t they?  Ugh.

If I were a spoil sport, which I’m not, or if I were the type of person to confront my friends in their comment boxes, their direct mail boxes, or (inconceivably) in person, which I also am not though I sometimes wish I was, here are a few points I might make:

First, there is no one left—at least among your mostly American, middle-class, female Facebook-using friends—who is unaware of breast cancer. There was a time when raising awareness about breast cancer was important. And it was fun to be part of that. But it’s over now. Breast cancer’s existence, unlike God’s, is not in dispute. But you already understand this, right? Because you use the awkward phrase “support of breast cancer awareness!” Really? “Yeah, we’re showing our support for the fact that we’re already aware of breast cancer, and, uh, breast cancer awareness, yay!” Be embarrassed.

Secondly, if there were anyone left on the Facebook-earth unaware of breast cancer, it might be a man. Why create an awareness meme that excludes half the population? Men have sisters, daughters, mothers, girlfriends and wives.  Men can get breast cancer too.

Thirdly…the spoil sport thing. At the level of intentionality, this is worse than the inane cancer awareness thing. Emotionally bullying your friends into sharing your crappy meme or post by linking said crappy material to a cause is vile and wrong. Stop inferring that your friends are spoil sports. Stop accusing them of “not really caring enough” or “not being courageous enough” about autism or depression or whatever to click a share button. Stop appropriating my cancer to push other people around. Just. Stop. Also—and I’m telling you this as a favor—you’re alienating your friends, even if they can’t bring themselves to tell you.

However, if you really care about breast cancer, there is a part for you to play. Cancer still needs awareness—but it needs awareness of its complexities. There are a lot of choices we have to make as patrons, as consumers, as advocates for our own health: from whether to get a mammogram to which pink-clad products we should or shouldn’t buy to what political policies we should support.  None of these are simple issues and tackling them isn’t exactly “fun.” Trying to keep up with all the information out there is like trying to navigate that health insurance paperwork that never stops coming.  So for me, having friends help with the ongoing research by posting articles or factoids is actually helpful. Even if it sparks discussion. Even if that discussion gets heated. There is value in building solidarity around women’s issues, but I’ll feel greater solidarity with women who strive to think critically than those who insist on continuing to treat breast cancer like a sorority event. I think we can do more, be better.

(Barrington is a two-time cancer veteran. Neither time was breast cancer, though many of her friends assume that it was because AWARENESS.)

Swimming

One of my summer project is swimming.  I’m not exactly sure why, as I’m not a fan of swimming. I don’t love the transition from being dry to being wet. I hate getting in cold water. I don’t mind getting in a hot bath in the winter, but dread getting out, having the air hitting my wet skin.  Nevertheless, I have made the decision. The pool I go to is housed in the Physical Education Building–a strange old building rumored to be destined for demolition in the near future. Along with the pool it houses ROTC offices, and strangely, the business office for the College so that I pass a view of the pool when I go to pick up checks from our business officer.  The view is different from inside. After I do a few laps and am out of breath I will switch to backstroke, listening to my Darth Vader breath as I look up at the  skylights and the rafters through blurry goggles.  Occasionally I’ll  see birds flying,  perching on the beams.

The pool at PED is open to staff and students only one hour a day, between 12:30 and 1:30PM.  The limited access time cuts down on decision fatigue.  I can’t tell myself that I’ll go at the end of the day, or the next morning, I have to go at the designated hour, and that’s that. I go on Tuesdays and Thursdays. On Sunday nights I start dreading it a little. The dread increases as I pack my bag on Monday night.   But at 12:30, when I pick up my bag from under my desk and march over to the pool building, it’s like the action is somehow separate from me. Left, right, left, right–my feet take me there.  I put on my suit, my cap, my goggles, and march out to the pool.  The surface of the water is a couple of feet down from the area around the pool, so there’s no way to comfortably just dip a toe in to test the temperature. I step off the edge and drop into the water.

And once I’ve done it, it’s not that bad.  The water isn’t too cold.  My cap keeps my hair from getting so wet.  My goggles are water-tight –something I can never remember from childhood–and so my eyes aren’t red and chlorine-y.   My deal with myself is that I only have  to get in the water and do a couple of laps, but often enough I put in twenty or thirty minutes.  After I’m done I have that special I’ve-worked-out feeling that comes from swimming, and by the time I get home I’m incredible sleepy.

I’m trying to apply the same compartmentalized rigor to a script I’m working on that I never want to write–despite the fact that I want to write it! My inner resistance is strong enough that I’ve lowered the bar for the project to one hour a day.  For one hour I have to sit at the computer with the project open. I can read through the script, I can do prep and character worksheets, I can write shitty scenes (giving myself permission for the scenes to be shitty is key,  since any requirements that anything be good would be enough to torpedo the whole delicate balance of my psyche. It is painstaking so far, but it is starting to work I think.  I’m not to the point where I sit for an hour and think it would be painless to stay with it for two or three more–the writing equivalent of a hundred laps–but at least I’m getting in the pool.

USC PED Pool

Passing

In February of 2003, a few months after my cancer diagnosis and surgery, I attended a cancer retreat in the Yarra Valley outside Melbourne, Australia.  It was an amazing ten days, that helped me transform my cancer experience into something that had value and meaning for me.  Part of what made the experience amazing were my four roommates. We were all under forty, among the youngest of the larger group.  We’d all experienced a life-threatening illness, and yet when we started talking at night, it could still seem like a slumber party! But while four of us were considered cancer-free after our surgeries and treatments,  that was not the case for Lisa.  She carried a burden greater than ours–the knowledge that cancer had already spread to her spine and her liver.  They’d already taken her uterus, and one arm was swollen with lymphedema.  She had endured many of the outcomes I most feared… and at the same time, she modeled for me how alive and vibrant a person could be even in the face of such feared outcomes.

Roomies at Gawler 2003Lisa (in the striped shirt) was not fearless, but she was fierce.  I saw her break down and cry at night, and I saw her wake in the morning newly determined to do everything in her power to live  more years–often citing her son, who was just a toddler at the time, and her daughter.  She did proud by her goals, surviving for a full decade since our time together.  Yesterday I woke to an email saying that she had died.

In my last post I talked about I’ve been struggling recently, to make decisions, to find meaning in the things that I do. Remembering Lisa is, for me, also about remembering perspective.  The worries I have currently are, in a way, a luxury. The kind of worries one has when one has health and the likelihood of a future. I am grateful for the time I have to figure things out, grateful for pain-free days, grateful for all the beautiful things and people in the world around me.  I’m grateful for the chance I have to try, again and again, to put experiences into words in a way that does them justice. In this moment, I am blessed.

Blind Date With Surgeon – August 30, 2012

AUGUST 30, 2012

Today Paul and I met with the surgeon I’ve been referred to, Dr. Y—. It went…okay.  On the plus side, she was extremely clear in her explanations of things.  On the minus side, there was some social awkwardness.

I should start (as we did in the appointment) with the scan results from the CT/PET. The good news–I guess–is that the scanners did not detect any cancer in the colon or chest or neck or anyplace other than the uterus and maybe one ovary.  I’m not jumping up and down, because it hadn’t occurred to me that there would be cancer in any of those areas–but of course it happens:  Something is detected in one area, and then they find out that it has spread to their spine or their lungs or their lymph.   So, from that perspective–I should be–and am–very grateful that there weren’t any bad surprises.

There were however, a couple of surprises which weren’t exactly good.  The right ovary looked normal on the CT, but it “lit up intensely” on the PET, which shows metabolic activity.  Dr. Y— said that this could be due to ovulation, and not cancer–but that she would recommend removing it in any case, to be on the safe side, so even if it turns out to be clear, I’ll still be out an ovary.

We talked a lot about something called “standard of care,” which Wikipedia defines as “appropriate treatment based on scientific evidence and collaboration between medical professionals involved in the treatment of a given condition.”

Standard of care, I gathered, could also be interpreted as the amount of cautionary action required for the circumstances–so it depends not just on the general diagnosis, but the specifics of a particular case.  Like the STAGE and the GRADE of the cancer.

I was familiar with the idea of stage, which is the degree of spread of the cancer, but grade is a new vocabulary word.  It is a measurement of quality, not quantity.  The grade evaluates the behavior of the cancer–ranging from non-aggressive: Grade 1, to the most aggressive, Grade 3.  The second surprisish” thing is that my cancer, because the biopsy reports it to be a “clear cell” cancer, falls in the Grade 2 to 3 range.  Dr. Y– referred to it as Grade 3 during the course of our discussion.

With a Grade 3 uterine cancer, the standard of care would be to take the uterus and both ovaries and some–or all of the lymph nodes in the area.

There’s a point in first dates, job interviews, conversations at dinner parties, where you can sometimes suddenly feel things begin to go south.  I’m not exactly sure where that turn happened in this case.  I think maybe it started when Dr. Y was saying something about perhaps “preserving” the left ovary–which, I understood, was a departure from the strict standard of care, so probably, in her mind, a generous offer.  I asked–since the right ovarian activity might have been due to ovulation, if it might make sense to have another scan–perhaps at another time of the month?  I think there was surprise in her voice when she asked “Would that with a view to preserving both ovaries?” And maybe there was a slight edge there too, because I found myself saying, “Well, maybe?” With a question mark at the end.

Then it got a little worse when I mentioned that the last time I had cancer, I hadn’t done the required chemo.

“So you are telling me this to say, ‘ha ha I didn’t do what the doctors wanted but I am okay’?”

All the sudden I wasn’t sure why I had told her.  I thought I was telling her to let her know we might not always want to take the conventional path, but maybe there was an element of truth.  “I want someone who wants to be on my team.”

“It is my job to give you the information.  You can do what you want to with that information.  I had one woman who listened to everything I said, and then she told me she didn’t want to do any of it, she was going to shoot green grass juice up her vagina.”

“How’s she doing?” That was Paul asking–not a question that went over very well.

“We didn’t stay in touch.”

The meeting wrapped up pretty quickly after that.  She seemed ready to be done, and I felt flustered. I forgot to ask for her email, and we never set anything up for a second scan for the ovary, so I sent an email through her coordinator asking about those things.  I am left with mixed feelings.  I guess it’s just part of my “cancer personality” that I want everyone to like me.  But then again, wouldn’t anyone want the person wielding the knife over their abdomen to like them?

I’m sure I’ll feel better about the whole thing when she emails or calls back–it probably wasn’t as bad as I feel about it right now.  In the meantime, I’m packing for Atlanta–Dragon Con.