What to do when diagnosed

No time for me to comment, but I just re-found a very useful CNN article on what to do when you're diagnosed with cancer. Brief and to the point.

The new dangers of fructose

Yesterday, I read an article on Reuters about a study showing that some cancers (particularly pancreatic) "feed" on fructose, growing faster when given more of it. Because eating less sugar is recommended for cancer (and cancer recurrence) prevention, this was not too surprising. However, the article distinguished between fructose--problematic--and glucose--less so. Of course, high-fructose corn syrup was mentioned: because it so permeates industrial food production, could it be accelerating cancers?

Today, salon.com has a terrific piece examining the issue. My favorite part: the Marion Nestle quote comparing sugar content in various sweeteners:

[Both corn syrup and] table sugar ... are about 50% fructose and are about equal in their effects. So is honey. Agave has even more.

Again, it's all about perspective. Let's eat less sugar--we'll be healthier. But I'm seeing several media outlets jumping on the "corn syrup is evil" bandwagon, and really--not helpful, guys.

_________ gave me cancer

I've heard plenty of theories--many quite nutty--about what causes breast cancer. Obviously, we don't really know. For some reason, the incidence is much higher among women in my demographic--upper middle class, no pregnancies, history of birth control use, and whatever other lurking dangers are created by a privileged, professional lifestyle. I may not have lived in Marin County, but I seem like a model Marin case.

I've also heard many other possible causes (see a list here), including:

• underwire bras
• antiperspirants
• heating food in plastic containers
• plastic containers in general (BPAs)
• drinking too much alcohol
• not drinking enough alcohol
• working the night shift
• and now--sleeping on a mattress.

That's right; sleeping on a mattress. Sigh.

I actually try not to heat food in plastic containers anymore, or to use BPA-carrying plastics. I avoid parabens (though I just discovered that they're in my new Philosophy moisturizer, so once that runs out, no more Philosophy). I try to drink no more than three drinks a week. I work on getting enough cinnamon, turmeric, green tea, vitamin D, and omega 3s. I even just completed an 11-day "cleanse" to try to detoxify my system (Isagenix, if you want to know).

Really, we don't know where the f&#% this disease comes from, but we clearly live in a world swimming in toxins and contaminants, and I'm all for trying to find new ways to improve prevention and resistance. But COME ON, PEOPLE. Enough with the snake oil!

Or am I just one of the lucky ones, because my cancer was on the right?

New research on chemicals and breast cancer

It was sure a sexy headline: "Cleaning products linked to breast cancer." Imagine all the late-night jokes about that one ("Honey, I won't be cleaning anymore!")--well, maybe if late-night comics were women.

When I read the article, I was dumbfounded. The research sounded like a joke. It's a self-report survey in which women say how much chemical exposure they've had, and that is compared between women with and without a history of breast cancer. It sounded extremely weak.

But with the Shirley Sherrod debacle fresh in mind, I decided not to stop there. I clicked the link ("suggests") to get to the Science Daily description of the study, somewhat more in depth. It said that the study comes from an open-access journal called Environmental Health. Well, that's not great because it suggests that the study wasn't strong enough to be published in a regular, peer-reviewed, restricted access journal.

But OK. I then went to the study itself. Here it is. And it's not really too bad, as preliminary evidence goes. I won't be throwing out all the cleaning products in the house, but this is enough of a signal that other researchers should now do some deeper digging.

What I really want to say, though, is this: It is so important to evaluate the quality of the science behind any of these findings. There is breast cancer news every single day: eat this, don't eat that, Avastin doesn't work, don't clean your house. (OK, that last is a stretch.) Some of these findings are coming out of really important and rigorous research. Some are absolutely bogus and should not be listened to. And then there's the substantial middle, in which this study resides, where there are suggestive findings but so much potential for fear-mongering or knee-jerk reactions. Take a deep breath and read the study. Check it out. Don't take the news article's word for it.

Insomnia

The Huffington Post--whose living section I often find suspect, filled as it is with pretty quack-y medical articles (let me just say, I think Suzanne Somers' approach to cancer prevention is a giant duck)--has a GOOD article today on cancer and insomnia.

When I was going through chemo, my acupuncturist would ask me, at every appointment, how I was sleeping. Disrupted sleep is a common correlate of chemo, at least in part due to hormonal disruptions mimicking menopause (or, inducing menopause in many cases).

Further, I've found that my sleep post-cancer-treatment is much less reliable than it was before. I have times when it's hard to fall asleep or hard to stay asleep. The study described in the article seems like a valuable step in helping deal with this problem.

Telling someone they have the big C

Today's LA Times has an interesting blog post giving results of a survey on how people were told that they had cancer. The phone-message-on-Valentines-Day example seems, um, not great.

My own experience was probably on the "most positive" end of the continuum. I went in for a formal follow-up appointment and got the news from the surgeon, who spent roughly an hour with me (and Noah), drawing pictures and discussing the treatment and answering all the questions that could surface from the depths of our confused, overwhelmed brains. He (the surgeon) also emphasized the word "cure" repeatedly, and his tone was so confident and positive that I never felt--at that time--like "I might die," just like (as I told Noah) "my life [was] going to SUCK for the next year."

The only bad part of the news-delivery process, for me, was that the surgeon and the rest of the oncology staff were angry with my primary-care physician for not taking responsibility for that process himself. And they let their anger be known, just a bit. So I knew that there was some buck-passing, and maybe I could have done without that. Overall, though, I'd give Norris Cancer Center an A in this area.

How doctors deliver the news: It's cancer

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What a touching story. For me, it's not so much that this guy is trying to keep his wife's memory alive, but rather the fact that her life (and death) inspired him to do so much with his own. He may be living in tribute to her, but he is emphatically living--what a wonderful gift she left him! The list seems pretty fun and interesting, too. I wonder what PhD he'll get.

Unfinished business: How one man keeps his late wife’s memory alive - thestar.com

What would I do?

Another great cancer-oriented article from the NY Times today. This one tells the story of a woman who was diagnosed with breast cancer at 31, was successfully treated, completed her medical degree and entered the field of palliative care, and then had a recurrence and severe metastasis of her cancer. She found herself resisting the same palliative approach she'd been advocating, and fought hard--there's no other phrase for it--until it killed her at 41. Ten years, end to end. She was not ready to give up and not ready to die--at 41, who would be? At 50 or 60, who is, really? In any case, it's yet another poignant and thoughtful piece from the Times, which seems to have a whole "cancer beat" alongside politics and world affairs.

Things are good with me. I passed the 4-year mark with clear bloodwork, mammogram, and physical exam. I have fully regained my strength and my life, and to a large extent I have recovered a sense of confidence that my life will continue for the foreseeable future--or, at least, not be cut short by cancer. Who knows, but the gnawing fear subsides a bit, and it becomes easier to live both for today and toward a future, and that's a nice thing. Of course, as the article illustrates, neither the future nor one's attitude toward it is very predictable.

"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.