"It feels sometimes like the entire world has cancer"

The NY Times today has a terrific profile of M.D. Anderson, the cancer hospital in Houston, TX. This is where my aunt Sylvia was treated for years--they helped her to become one of the longest-surviving multiple myeloma patients they'd seen--until she was too sick to make the drive from San Antonio on a regular basis. This article is also incredibly sad, and it's a bit scary for me to read about the nurse who beat breast cancer only to see it recur as metastatic disease 9 years later. Next year will be 4 years for me, and I take none of them for granted.

Quick link

It's been forever since I've posted, I know. I have a long, long post weaving itself in my head, and sometime soon I'll actually write it down and post it. I'm still here, still doing well, no recurrence (knock wood! next checkup soon) and getting on with my post-cancer life.

But I just had to post this today. I saw a reference to it in the letters section of the NY Times. Many news media this week covered a story about cancer patients' not participating in research studies, and how that contributes to a slow pace in treatment discoveries and advances. There's been some good discussion of why this happens, but one letter-writer pointed out that a major impediment to participating in clinical trials is that they may be geographically distant from the patient, and it can be expensive and risky to travel to them.

Well, I had never before today realized that there's a group that arranges free flights on corporate jets for patients undergoing cancer treatment. It's called Corporate Angel Network, and its website is here. Of all the great "free" things I've heard of for cancer patients, this one makes me the happiest. I hope the cancer-blogging network can get the word around comprehensively, so that travel distance doesn't have to slow down advances in cancer treatment!

A sad, sad story

I've linked before to columns by Dr. Amy Tuteur, who blogs at salon.com. Today, salon has front-paged an excellent piece of hers, in which she describes a devastating experience from her medical internship, when she did not speak up against an oncologist who recommended chemo to a clearly-terminal patient.

I'm sure that many of us who have, or have had, cancer can relate to the oncologist's desire to pursue any chance of recovery, no matter how remote. But many of us who have had chemo can also relate to the patient's conviction that the end of life should not be a time of over-medicalization, but rather of sitting on a beach somewhere and saying goodbye peacefully (even if, still, painfully) to a lovely world.

The article is food for thought. It is very easy to be swayed by the signals we get from our doctors. One doctor who offers a strong opinion can change the entire rest of our lives--and they are not always right. To me, the moral of the story is: independent second opinions!!

Three years, all clear!

Three years ago today, I'm pretty sure I was skiing at Copper Mountain in Colorado. Three years minus 7 days ago today, I was standing in the shower saying "Oh, shit" as I felt a subcutaneous golf ball on my right breast.

Today, I drove 26 miles north to Norris Cancer Center. I had my blood drawn by my favorite "stick," Dean (he said my arm-crook veins are hardened by the chemo, and he took the blood from a vein that crosses the back of my thumb--but he got it painlessly, and on the first try). I waited for a long time in the mammogram waiting area, with about a dozen other women, some with the short crew-cutty hair that marked them as recently completing treatment; some looking frightened, with husbands' hands clutched in theirs; others playing it cool, telling anyone who starts the briefest conversation that they're "just there for my yearly!" I wore my new t-shirt: "I already kicked Cancer's ass. Wanna be next?"; only one nurse commented on it (positively), but it garnered a lot of furtive looks. I wondered if the "ass" was shocking people, or if I looked too young and healthy to be a cancer survivor (I like that one!), or if maybe they secretly liked it.

Anyway, I was called late for my mammogram, by a cute little radiographer who did a fine job of mushing, smashing, and subjecting me to excruciating pain. I also think mammograms must have been invented, by the way, by someone with no concern for breast perkiness. Those underside ligaments must age about 6 years with each image.

All was going fine; she went off to consult the radiologist and I relaxed with my iPhone to wait to go see the doctor. But then she came back and said that the radiologist wanted "a few more views," to look at something she wasn't happy about. I barely blinked; we've been keeping a close eye on the left side (the one not previously involved) because it's fibrous and sometimes achy.

But they didn't want to look at the left. They wanted to look at the right.

And for the next 5 minutes or so, I experienced real terror. I've already had surgery and radiation on the right. If there were a new tumor there, the whole thing would have to go. And I've sat through enough support group meetings to know there are worst things than losing a breast, and there is life after a mastectomy, and reconstructed boobies actually look pretty real and cute--but still. While she mashed me into new, contorted positions, and used a compression plate whose effect was like having a stiletto heel pierce a nipple, I just kept thinking, "I don't want to lose it after all of this." It's funny; I didn't even think about chemo or radiation or months of illness. I've thought about that before, but even my nightmares of getting cancer again--somehow they just never involve it happening on the same side.

It was super scary, but when the tech went back to consult again, she returned saying that it was all clear, that the extra mashing had given a better view and I was fine. I couldn't quite relax and believe it until I saw Christy, my oncologist, but her exam and the bloodwork and the images were all telling one happy story, she said, and finally I did believe.

Still, not until I was driving away did I get the moment of full realization that I've now reached the third year of survivorship. With my cancer profile, this is really huge. Two years was huge, but three years is huger. My risk curve drops off precipitously at two and then three years. Not like I'm ever "home free," but at this point I can really relax much more about the prospect of recurrence.

In the car, I felt the grin spread across my face like someone was stretching it with their fingers--and it stayed there until the third time a slow driver cut me off in the left lane. Then I was back to reality, which is what life is, after all, and I must say I'm pretty glad to be here.

Cool study!

An enzyme that blocks breast cancer? -- see here

Birthdays

I caught myself in some insanity this week.

Friday was my 42nd birthday. Around Friday, you could have found me gazing into a mirror, looking at the lines and wrinkles around my eyes and mouth that weren't there before chemo. You could, if you could see into my mind, have watched swirling thoughts of sadness and loss about getting older, losing skin elasticity...and resentment toward cancer, for how its treatment has hastened and deepened my "inevitable decline."

I'm not sure how this craziness took hold of me, but when I went out to the beach yesterday, on a tenuously lovely day sandwiched between days of rain, and ran and hit a ball and enjoyed playful banter with friends, the world righted. I remembered that I don't mind aging at all. I am thrilled to be aging, thrilled to be getting older. I'm especially thrilled to age, for as long as I can, in a strong and healthy body.

It sure beats the alternatives.

It's not too late

It's not cancer-related, per se, but I just read an incredibly moving article about a man who, during the civil rights era, beat a young black activist bloody. The activist survived, and grew up to be Congressman John Lewis; his assailant lived for years without realizing who his victim had been, but plagued by guilt over his own actions. When he did come to understand the link between his behavior and this member of Congress, he contacted Lewis to try to offer an apology. The two men met, Wilson (the attacker) apologized, and Lewis forgave him.

I find this moving for so many reasons. First and foremost, it's never too late. These guys waited over 45 years--waited to make amends, or to accept them. Wilson is the first person involved in that attack to come forward to Lewis. They are both humbled and profoundly changed by their new bond of understanding, which grew out of shared violence. People can address their regrets, even if it takes too long; other people can forgive, and experience the wholeness that comes through forgiveness. And from a Buddhist perspective, it is wonderful to have the additional compassion and healing in the world, that didn't exist before these two men met, and that now extend benefits to all of us.

The LA Times today mentions a study by USC researchers that found green tea to block the effects of a specific kind of chemo agent used on multiple myeloma and a couple of other cancers--not breast cancer, though. Green tea is an antioxidant (perhaps it would be more precise to say it contains antioxidants) that are effective at preventing breast cancer, and it may even aid in the treatment of breast cancer. Although some very conservative oncologists, such as the local practice near where I live, don't want their patients using green tea or other antioxidants during chemo, I found a substantial amount of research showing that green tea actually aided the effects of chemo. It may help chemotherapy target cancer cells better, while protecting non-cancer cells and thus easing the damaging effects on the body. (Note that I am linking to a layperson-friendly page, not to one of the studies, but a quick Google search will get you the real research.)

I'm very happy to say that I was treated at USC, which--this study notwithstanding--seems more open to green tea; I wasn't treated at the local practice.

Just wanted to share!

And now for something a little bit different

I've been quiet again! Nothing bad. In fact, I've been writing plenty, only it's all been book chapters and reviews of journal articles and other scintillating fare. Work is back in full swing and if I'm not cleaning up the remains of my fall course, I'm writing or doing tedious administrative stuff, or if it's a great day, playing some volleyball. But I keep meaning to write this post, and last week's season premiere of Big Love (on HBO) finally gave me the kick in the pants I need.

I want to talk about arts and literature. Surely we've all noticed by now that cancer is a popular plot device in books, movies, TV... Sometimes it's infuriating, sometimes it's downright terrifying. There are quite a few artistic works that have been important to me during my treatment and post-cancer life, and I wanted to share them.

I'll start with the things I don't recommend so highly. You may remember that Nancy on thirtysomething got breast cancer (she got better), as did a character--Dana, maybe??--on The L Word (she died). And Samantha of Sex in the City, of course. In fact, Samantha's oncologist's name was taken from a real oncologist here in LA, the one from whom I got my second opinion. Anyway, these portrayals were fine, but they all made me cynical and annoyed just the way that Pink October does. I couldn't decide whether Dr. Susan Love's appearance on The L Word was a nice bit of public service and education, or a cringe-inducing turn by a non-actor. In either case, the Art was definitely taking a back seat to Being Important Through Breast Cancer.

While all these portrayals were just pedestrian, there is one movie that I would absolutely, positively tell anyone with cancer to fling far from them. Torch it, burn it, or if necessary run in the opposite direction. It's the movie (or play) Wit, starring Emma Thompson. Sure, an acting tour de force, but perhaps the most dire, depressing, hell-on-earth depiction of cancer (ovarian) and chemo (brutal) that I've ever seen. And nothing good ever happens, except she gets a popsicle. Seriously! This is NOT a movie for a cancer patient.

OK, now on to better things. These are still not happy, necessarily. But they are works that gave me hope and comfort and a sense of larger importance in life--even if they sometimes left me sobbing, too.

One of the books I read during my winter break was Jhumpa Lahiri's Unaccustomed Earth. I've loved this author for a while now, and didn't even realize until I started the book that it was also on many year-end top-10 lists--but I can affirm that it deserves to be there. The latter half of the book consists of three connected short stories, collectively titled Hema and Kaushik, about two people whose lives touch briefly at a couple of points in time. I might not recommend these stories to someone currently being treated for breast cancer, or to anyone out of treatment but plagued by fears of recurrence: Without spoiling any surprises, there is a plot point involving breast cancer that isn't a happy tale. But the writing is beautiful and the stories are deeply engaging. (And by the way, ALL of her books are fantastic.)

I've mentioned, before, the TV show Battlestar Galactica (the current version, not the cheesy 70s incarnation). It's not geekdom sci-fi; it's intelligent, challenging drama. In the very first episode (a 3-hr movie, really), one of the main characters, Laura Roslin, is diagnosed with breast cancer. She's the secretary of education in her world's government, and she has to attend a ceremonial event just hours after the devastating news that her cancer is inoperable and incurable. While she is at the event (which takes place in orbit around her planet--there IS a sci-fi element), the planet is nuked to oblivion and everyone in orbit must flee the hostile attackers. When her aide finds her crying in the lavatory, she tells him about her diagnosis and says something like this: "The human race may be completely destroyed, and all I can think about is, I have cancer and I'm gonna die." Mary McDonnell, the actress, just nails it. In any case, it's not only Roslin's cancer, but the whole theme of dealing with terror and loss and existential crisis that has made this show a touchstone for me throughout cancer and survivorship.

I want to mention two shows that aren't about cancer, per se, but were also enormously important to me during treatment and shortly thereafter. The HBO miniseries Angels in America, based on the Tony Kushner play, is one of the most beautiful works of art--it's a visual poem, or symphony, not just a drama--I've ever experienced. It's full of darkness and dread, but then hope and life and determination. "But still. Bless me anyway. I want more life." These 6 hours say more profound things about living and loving than I've seen anywhere else.

The last one--HBO again; I wonder if they'll ever get back to this level of excellence?--is the show Six Feet Under. It's off the air now, but the DVD boxed set is excellent. The show deals with a family in Los Angeles (holla!) who runs a funeral home. Each week features the "DGDJ," as the folks at Television Without Pity used to say ("dead guy du jour"). The episode opens with someone's death. They run the gamut, from someone slipping in the shower; to a dogsitter racing down a hill on rollerblades, pulled by the two dogs she was sitting, and running smack into a car; to a "Jesus freak" listening to a religious broadcast, seeing a bunch of blow-up porn dolls escaping into the air from the back of a truck, thinking they were angels here to announce the Rapture, and then running out into the middle of traffic to be taken up by them. And, of course, cancer: the woman who looked pregnant with the tumor that had grown for months, that was now untreatable and killed her in a few days.

It might seem macabre or depressing to watch deaths occur every week, but I found Six Feet Under hugely reassuring. It reminded me of just how many ways there are to die, of how delicate and fragile our lives are, how vulnerable to the slightest vibrations in fate and positioning. And that reminded me of the futility of sitting and worrying about whether cancer would kill me, since there are a billion other things that could do it, too, and meanwhile I have a life to live and I need to embrace it. Just as the characters on this show did, with all their messy and dysfunctional fumblings.

Oh, and I should explain my reference to Big Love! One of the characters may be having a recurrence of ovarian cancer--which nearly killed her 7 years ago. :-( That's sad and spooky, but it was interesting to watch her immediate response, which was to sit down and tell the cancer that she was not going to let it win, and then to seize control of her own life, determined not to be a passive victim of fate or other people's whims. You go, girl!

I know this isn't a very comment-oriented blog, but I would really like to invite readers to share the stories, books, music, artwork, movies, TV shows, etc., that are meaningful to your own sense of life or to your cancer journey. I'd love to learn about more things to check out!