Affichage des articles dont le libellé est cancer. Afficher tous les articles
Affichage des articles dont le libellé est cancer. Afficher tous les articles

jeudi, avril 04, 2019

wear sunscreen, people

My favorite quote is "If I can't be a good example, let me be a horrible warning."  It turns out that once again, I get to be the bearer of good news AND cautionary advice, simultaneously.

The good news: "the result of the biopsy was consistent with a benign mole. No sign of any skin cancer..."

The other news: Wear sunscreen, people.
. . .

Last Friday, I got a new scar. It's where a mole above my lips and to the right of my nose used to be. I say 'used to be' because there really isn't a tidy way to biopsy a beauty mark -- the whole thing was removed a week ago. My dad was in the back of my mind as I sat with the dermatologist. He had numerous small skin cancers excised from his face and ears after spending years in the sun without a thought of wearing a hat or anything with SPF in it.
. . .

It's interesting because I've considered my radical nephrectomy scar my 'beauty mark' for nearly sixteen years now. At 7 inches long, it is silvery white and runs from just above my right hip around my flank to my back, stopping a few inches before by spine. It is dotted with staple marks and is a reminder of when surgeons carved my diseased kidney out of my body to save my life. The scar has faded and is now also joined by more beauty marks: stretch marks from two pregnancies. The surgery that created the scar was a success, removing a few malignant tumors which would have killed me by now. Within my kidney were the slow-growing seeds of death -- the largest tumor was a scant 2.3 cm by 4 cm; the smallest was only 1.1 cm by 2.1 cm.  There was no metastasis and no lymph node involvement,  so my diagnosis was stage-1 clear cell renal cell carcinoma.

The 'typical' kidney cancer patient is male, of African American or Scandinavian American decent, has been a heavy smoker all his life, or worked in an industry with a high exposure to certain chemicals. He also is diagnosed at stage 3 or 4, when there's little to be done for him.  I met none of these criteria. I was (and still am) a medical outlier. Every healthcare professional who takes my medical history puts down her pen or pushes away from the keyboard and asks me how my cancer was found at age 28. They remind me that my diagnosis 'doesn't happen to 28-year-old women' and that I am lucky to be alive.  I nod and remind them that cancer can happen to anyone, that there is a lot science still doesn't understand about epigenetic changes and our environment, and that I was fortunate to have a physician who took me seriously when I said I had an odd, lower right quadrant nagging pain when doing yoga.
. . .

I'm not a terribly vain person (I wear makeup maybe a few times a year, mostly at important work meetings), but I was pretty upset about needing to remove a mole that is connected to my identity in a lot of ways.  My children were both fascinated by it and constantly reached for it as infants and toddlers, grabbing and pinching it until their curiosity was sated / they were old enough to understand what it was.  My daughter has the same mole, in the same spot (but mirror image and --like mine was at her age -- still only a pin point on her face).  She has often asked if her face will look like mine and if her mole will be like mine when she's an adult. I've told her the truth -- I'm not sure.

When I got home from the procedure, Leo and I explained to the kids why I was wearing a bandaid and couldn't smile or open my mouth very wide. We never said the word "cancer" to them.  Seba couldn't take his eyes off my stitches when I had the bandaid off. Lucia asked me hundred questions over the weekend about it, finally admitting that she had been scared that she might have to have her mole removed eventually, too. I promised her that I was doing everything I could to make sure it would not happen to her -- and that it why I insist on putting sunscreen on them before every soccer game and that she and her brother wear hats when feasible.

. . .

Tomorrow, I will return to the doctor's office and the last 3 stitches will come out. I'll ask him if he thinks the 1 cm scar will fade into my smile line or if he thinks I could tattoo a 'replacement' mole in its place. He's already told me to keep the scar well protected from the sun with sunscreen and a hat,  and that makeup will cover most of it. I'm sure about the sunscreen and hat but not sure if I'll start wearing makeup again. To be honest, I spent a lot of time looking in the mirror before I had kids; I often find that I've gone all day without looking in one only to discover eye crud off to the side behind my glasses hours after getting to the office. I've spent many hours looking in the mirror this week, getting used to my new face and trying not to think too much about what my biopsy results would be. I've over-thought the coincidence that my 1 cm scar is slightly smaller than my smallest malignant kidney tumor. But I've also remembered that while having kidney cancer was the Krakatoa of my life, that there's also been more joy, more adventures, and more passion in the last ~16 years than in the entire 28 years before. For now, I'm focusing on the joy -- and shopping for some more hats and sunscreen for everyone in the family.

lundi, janvier 22, 2018

quotable

- We have the capacity to find joy in all things. A negative attitude is worse than a tumor. The best of life can come from the worst of life. - Everyone has a difficult trial. Everyone. Be compassionate. - When your looks get taken away, you better have a solid character or you're screwed. - Priorities are revealed when abilities are stripped. Put them in order before life forces it upon you. - No one learns in the middle of a crisis. Survive. Breathe. Reflect. - Life is too short to take offense. Assume the best and move on. One day our children will struggle. We must endure our own trials so that, when needed, we can look in their eyes with perfect credibility and say, "I've been through the same struggle. I know your pain. You can do this." By Mark A. Smith, 23 years ago today my parents and doctor walked into my ICU room, held my hands, and told me I had only a few months to live. I had a rare disease called Wegener's Granulomatosis and had 18 tumors throughout my lungs, kidneys, and airway. 16 years of chemotherapy, 200,000+ pills, 34 surgeries, and a million prayers later and I'm still around

mardi, novembre 22, 2016

the good that's in us and the good we do will outlive us

This story is heartbreakingly beautiful. Christine Ennis, mom of 3 young daughters, including an infant, is nearing the end of her life due to Stage 4 breast cancer.

"The good that’s in us and the good that we do will outlive us." - Fred Dickey
Mother of three making peace with cancer and death
By Fred Dickey
November 18, 2016, 9:55 AM

I don’t want to write this. I really don’t.

But sometimes you have to swallow hard and do your job, because stories of courage and great decency are so infrequent that to ignore one would betray the journalist’s duty.


Such a story is Christie Ennis.

Christie has Stage 4 breast cancer. I first met and wrote about her last December. At that time, she was battling her disease while eight months pregnant. She impressed me, and a great many others, with her gentleness, strength and affection for everyone. That has not changed. But neither has the cancer, except to get worse.

Christie, 36, her husband, John, and their three daughters live in a small rental home in Clairemont. John works long hours in the restaurant business. He also watches over the kids and does homemaking chores after sleeping for a few hours.

Christie is a pretty woman. A bald head, a body bloated with water and eyes misted with pain and sorrow don’t obscure that.

She is also a lovely woman, but that emanates from who she is, not how she looks.

She is also a brave woman, and you will see why.

*

I walk into the living room where Christie is curled into a chair with a blanket around her legs. She looks up and smiles broadly and greets me with an outstretched hand.

It’s also present and evident, that damned disease, but she makes it unimportant, just for a moment.

I ask, lamely, how she’s doing.

She knows exactly what I mean, but does not falter. “My cancer has been growing,” she says. The smile weakens but doesn’t leave her lips, because she’s reluctant to spread her grief to someone else.

“We found out last week that it spread to my skull, and through my arms and ribs and pelvis and sternum and legs. It's everywhere. It's in my liver. It's done quite a number on the liver — consumed the right lobe, then affected the spleen, which causes more pain.

“That's all happening right now. It's very difficult because (the doctors’) hope is to keep me alive. Once you're terminally ill, it's very hard.”

John, standing nearby, says: “The conversation with the doctors is more about easing pain and making her comfortable. There's not a whole lot of talk about remission anymore.”

She says, “My tumor markers recently exceeded the maximum measurement, and after that, they stopped counting. I started to feel abdominal pain and have some swelling. I got a fever and I got bad delirium.”

Consequently, she has been put back on chemotherapy, her third session. The chemical is Taxol, and it is very potent. It is injected through a port in her chest. She says it seems to be stopping tumor growth, but no one knows for how long.

“Taxol is supposed to be great. They just have to find the balance for your body. At first, it was really strong. Too strong, like it-almost-killed-me strong.

“It left me writhing on the floor like death. I went to the hospital in an ambulance. People thought I was dying. The dosage had been way too high and it caused terrible side effects.”

John says, “When that happened, I thought we’d lost her.”

What are the side effects?

She looks into the distance, searching for the proper awful words. “It’s crippling. The edema. The sores all through your (gastrointestinal) tract. They start in your mouth, really gross, scabby things that go all the way down. It affects everything … the exhaustion … the neuropathy ...”

Normal cells are orderly and know their place and purpose. Cancer cells, for reasons mainly known only to them, are ones that go crazy and repeatedly replicate and spread. They take over and disrupt the body’s ability to function, and when allowed to run wild, will kill. Microscopic Frankensteins.

Taxol is a chemo drug whose purpose is to destroy those outlaw cancer cells by making them forget how to reproduce. Sometimes it works, often it doesn’t. It also plays hell with normal cells.

However, people who have Taxol injected into them to the extent of Christie are transported to a medieval dungeon where the side effects mimic the rack and iron maiden. If one were to make a list of side effects, the column would carry forward to a second page.

As we talk, daughter Vivian flits around the room, busying herself with 2-year-old things. Grace, 10 months old, sits on the floor nearby, probably strategizing about those first steps she’ll soon embark on. Alana, 6, is at school.

Christie’s lips quiver and her eyes mist. “I don't want to cry, but (chemotherapy is) really much harder this time. I’m having a really hard time.

“It’s dark, very dark, really dark. It's a very awful place to be because you're all alone.

“The weakness. I can't even hold my baby. I can't physically pick her up. That makes me really sad. Somebody else has to do the things that I should be doing for her, like putting her in her high chair or giving her a bath.”

From your tone, I sense you feel guilty.

“Oh, I feel terribly guilty, and I feel helpless. I feel very sad. That's my world. That's my purpose. Raising my children is what I do, but now I can't do that. It resonates from such a deep chord that you can't take care of your own little cubs. It's very sad.”

She looks at Grace playing at her feet. “I can't pick her up when she's crying. It's really very tough. That's the part I mean about being alone. It's also tough on John.”

Her voice is sad but matter-of-fact as she talks about something that’s normal in her situation, but rarely spoken of.

“Oh, it's got to be really tough on him. It's really hard on us at this time. I feel like we're so divided.”

How do you mean?

“Now, he needs to be wrapped up in his job. He works so hard and tries to take care of the kids because I can't. I feel like he's angry, mainly at the disease, maybe even at me a little, which I know is normal. He’s very loving and supportive, but there's not any talking or friendship or the kind of stuff that happened before, that united-ness.”

She accepts my offered handkerchief.

“Thank you.” A short laugh that she doesn’t feel. “It’s better than my sleeve.” **

John talks about the difficulties of making do and getting by in their time of trial. He has a manager’s job at a new pricey steakhouse, and he works as a server at banquets part-time to pay their hefty bills. They have just met their $12,000 out-of-pocket insurance quota, but have found it necessary to employ a full-time nanny.

“Every month, it’s skating on thin ice,” he says of the financial burden.

Even so, the family has started a college fund for the girls, although thus far it’s filled only with good intentions. Both Christie and John are college graduates and want the same opportunity for their daughters.

Christie enjoyed a career working worldwide in the hospitality industry.

Through it all, she retained her Catholic roots and recently adopted a parish in La Jolla called Mary, Star of the Sea.

When you say, "Why me, God?" what comes back to you?

“I don't say ‘Why me, God?’ I just pray for peace, for courage, for strength, and to just keep going.”

I’m amazed at the number of people who care about you, who follow you on Facebook.

“Oh my goodness, it's so overwhelming in the most beautiful way. The prayers and the thoughts and the love that people are sharing … my goodness, all that kindness,” she says in wonder.

*

John and Christie had settled into what she calls a “solemn partnership” in lieu of marriage, but last summer on a Hawaii vacation, John proposed.

“He said he understood what the road ahead looked like, but that he wanted to be there through everything. He was on one knee by a waterfall. He was fumbling in his backpack and pulled out a beautiful ruby ring. He was so cute. I cried.”

Six weeks ago, John and Christie had a formal wedding in New Jersey. The whole family was there to celebrate with them.

But when she returned, the cancer was waiting — angrily.

*

Describe the pain, Christie.

“The pain is the worst because it's just such a physical reminder of what you're going through. It's excruciating: sharp and stabbing and dull and achy and sore.

Can you eat OK?

“Yes, give me a big pizza. But I can't eat what I want because there's no space because of the edema. Everything is so swollen, my stomach is so tiny, but I want to eat that whole pizza pie. My appetite is there. Just the ability to eat is hindered.”

Christie does not shy away from straight talk, but this is the question I don’t want to ask: At what point do you say, “No more”?

“It’s really tough. I sometimes think with my life reduced to this, like laying under a blanket ...That’s not a way to live. I know it’s very controversial ...”

What’s controversial?

Her gaze does not leave my face. “California is a right-to-die state. It's something I consider, because I don't …” Christie’s eyes fill at the unfinished thought. “The idea of death is sad for me because I don't want to leave my children, my husband, my family, but I'm at peace with it. It’s OK.

“But being consumed, turned into mush by this spreading thing. It's not something I want anyone to witness. I don't want to have to go through it.”

Speaking those bleak words is tiring, and her voice softens. “It's exhausting, but you just …The option is to lay down, literally lay down and die, but I’m not there yet.”

How would you like people to think of you?

The change of subject momentarily lightens her spirit, perhaps by thinking of friends.

“Wow. I would like them to think of me as positive and loving and kind. However, with the pain, sometimes it's impossible to be a nice human, and I’m not at my best.”

What do you want for the girls?

“I want them to just feel such love and have a solid support system. I want for them to be well-rounded, well-mannered, and good humans. They have to be good humans. They better not go out there and reflect poorly on me.”

Discussing the girls in a future that does not include her is a stab in her heart.

“I really want to get so much better because I ...” She pauses to dab her eyes. “You normally don’t see me cry very much, but I'm a crier these days. I just want to get up and walk around. The things that you take for granted, oh my goodness, the things you take for granted.

“I don’t sleep with John in the same bed. Our bed is physically too high, and so I’ve been sleeping in this front room where the bed is very low … Just things that you miss. Sharing that space with someone.”

John comes in and reminds us that the time nears for Christie to get ready to go to the hospital for her next chemo session. I suggest we stop and start packing up.

Her smile widens and she says, “Yes, please. Let's stop on a note where I'm not crying.”

**

Cancer is serendipitous. Willful. It can confound oncologists and let its victim survive for years. Or it might shock them by a sudden plunge to the death. But if the affliction is severe enough, it will eventually get to where it’s going.

If cancer doesn’t allow Christie to see her girls grow, loved ones won’t forget how she reached out through the pain and touched them when she could no longer hold them. How she cried at the buds she would not see bloom. And how her soul ached not to leave them.

It’s wisely said that the good that’s in us and the good that we do will outlive us. In years to come, Christie’s daughters will look at the picture on the mantle and ask, “Tell me again what my mother was like?” And the words will glow, and Christie will live.

Fred Dickey’s home page is freddickey.net. He believes every life is an adventure and welcomes ideas at freddickey1@gmail.com.

lundi, novembre 14, 2016

quotable

“We can’t expect the world to get better by itself. We have to create something we can leave the next generation.” Gwen Ifill, American journalist, television newscaster, and author (September 29, 1955 – November 14, 2016)

mardi, novembre 10, 2015

quotable

"None of us get out of life alive, so be gallant, be great, be gracious, and be grateful for the opportunities you have. We don't know where we might end up, or when we might end up."
- Jake Bailey, 18-year-old student from Christchurch, New Zealand to his graduating class, after being diagnosed with Burkitt lymphoma and given 3 weeks to live.
Cancer-fighting student defies doctors to deliver emotional end of year speech 
BY JACOB GILLARD 
An 18-year-old student from Christchurch, New Zealand, has defied all odds to send off his school year, delivering a speech to roaring applause at his high school after being diagnosed with cancer. 
Jake Bailey, who had been given three weeks to live by doctors if he did not get treatment, took the stage at Christchurch Boys High School's Prize Giving ceremony in a wheelchair to celebrate the end of his high school career, after being released from hospital to take part in the event. 
In late October, the teen was diagnosed with Burkitt lymphoma, according to New Zealand Herald, an aggressive cancer which can kill if left untreated. "They said, if you don't get any treatment within the next three weeks you're going to die. Then they told me I wouldn't be here tonight to deliver this speech," Bailey said. 
Reminiscing on the final year of high school — one of the most important times in any teenager's life — Bailey focused on commemorating his year's history, achievements and thanked his friends for all their support. He remained resolute throughout the speech, telling the hall the speech "isn't about what's to come, [but] it's about what an amazing year it's been." 
"None of us get out of life alive, so be gallant, be great, be gracious, and be grateful for the opportunities you have," Bailey said. "We don't know where we might end up, or when we might end up." 
After the emotional speech finished, Bailey's cohort banded together to perform the haka for him. "I wish you the very best in your journey, and thank you for being a part of mine," Bailey said, as he finished off his address.

vendredi, mars 14, 2014

love, the second time around

A gorgeous piece from the New York Times' Modern Love essay series.

Modern Love: A Second Embrace, With Hearts and Eyes Open
 I looked across the restaurant table at my date, an attractive brown-eyed man with two young children and a broken marriage, as he recounted his romantic history.

“I used to think the relationship part of my life was settled and I never had to worry about it,” he told me. “Now I think, if you love someone, you have to take it one day at a time. And you have to work at it one day at a time.” There was a hopeful gleam in his eye.

I smiled and thought, “I could be in a relationship with a man like this.” In fact, I knew I could. Reader, I had married him. On this night, long after we had thrown in the towel on us, here we were again, crawling back into the ring. This time, though, it would be different. We just never imagined how different it would become, or how quickly.

Our unraveling had not been a swift, decisive catastrophe but a smaller series of no less destructive forces. We came apart the way many couples do: via the gradual realization that we were unhappy, and the inescapable conclusion that our relationship was not a refuge from our unhappiness but a cause of it. We were two nice people who had been deeply in love but who found themselves, nearly 20 years later, in love no more.

Neither of us wanted to spend the next 40 years going on as we had, seemingly safe within an institution but deprived of its most essential nutrient. If we had not had children, it would have been simple. We no doubt would have disappeared amicably but entirely from each other’s lives. But we did have children.

As my friend Linda, whose husband left her while she was pregnant, once told me: “No matter what, it’s a lifetime relationship. I’ll be at my son’s wedding and my ex will be there.”

Likewise for us, there was never any question that the good will we had once shared, combined with our love for our daughters, was stronger than any current disappointment we could harbor toward each other. We sat together at school plays and parent-teacher conferences. We shared holidays and birthdays. We even took another apartment in the same building, to make the situation easier for the children. After a while, the wounds of the breakup healed, and a new friendship was formed, a bonding unique to the front lines of parenthood.

The end of a long marriage, especially a marriage with children, will shake your world to its foundation. If you’re lucky, you’ll eventually come out of it a little braver and wiser. It wasn’t long after the split that I realized I liked the new person inside of me that this heartbreak was forging.

What I hadn’t expected was that I’d like the person he was becoming, too. Then one day he said something funny and I laughed, and then he looked at me with a directness I had never seen before and said, “In case you hadn’t noticed, I’m flirting with you.”

I’ve always been a sucker for a man with a smooth line. So I flirted back. And when he asked me to dinner, I said yes.

A short time later I strolled through a museum with my friend Lily, a woman who had recently reconciled with her husband after a yearlong separation. “How did you know?” I asked her. “How did you believe again, after everything you’d been through?”

“He said what I needed to hear,” she said, “even though I didn’t know what I needed to hear until he said it. You’ll see.”

Soon after that I went on a date with the father of my children, and over a plate of plantains, I did see.

Our reunion, low key and unmarked by flying rice though it was, prompted a variety of responses among our friends and family. There were enthusiastic cheers from the romantics, and there was skepticism and concern from others, who remembered all the miserable details of our unraveling. But falling in love again after a breakup is no simple matter of retreat. We are not the people we were when we met two decades before, and we had no desire to relive a marriage that had, to the best of both our recent memories, failed unequivocally.

Yet if we had taken the leap of faith it takes to end a long-term relationship, surely, we figured, we could muster the even greater trust it would take to open our hearts again. Besides, it was nice being with a man whose emotional baggage from his crazy ex I could really understand. And my children were happy about Mom’s new man.

What ensued that summer we began again was a blissful period of lazy days and tender nights. Then it took a severe swerve. On Aug. 10, I had updated my Facebook status to read, “Best summer ever.” On Aug. 11, I learned I had malignant melanoma.

As I lay in a hospital a few nights later, doped to the gills, bleeding from three surgical sites and hoping I was clear of cancer, he and I held hands and watched “Harry Potter and the Goblet of Fire” on TV.

“I’m sorry about all this,” I said groggily, “because now you have to stick with me. Otherwise all our friends will think you’re Newt Gingrich.”

“I see you had this planned all along,” he said. “Well played.” But later, when I told him I knew this wasn’t the reunion he’d had in mind, he just chuckled and said, “You’re not getting rid of me that easily this time.”

As I recovered through the bleak period that followed, through a grim rediagnosis that left me with a prognosis of mere months to live and then into a clinical trial that shocked us by eradicating my disease entirely, he cooked dinners and did laundry. He arranged playdates for the children and read them stories. He picked up prescriptions and cleaned up enough blood to make Eli Roth shudder. He left me awed at a strength in him I had never seen before. I had never had to.

Our relationship already had attained a bittersweet edge by virtue of its status as a second go-round, but there’s nothing like journeying through the wringer together to take that whole skipping-through-the-daisies aspect out of your dates. Although our experience has been far from sexy, it has been peculiarly romantic.

Nobody writes songs about sitting on the edge of the tub while a man applies topical antibiotics to your oozing skin graft. There are no poetic odes to women with gaping scars, no sonnets to men who may be wearing the same shirt for the third day in a row.

But maybe there should be, because everything I thought I knew about love at 24 seems pretty absurd now. I didn’t know then that a wonderful relationship would one day become unsustainable. I couldn’t have imagined that later on, strangely enough, it would become a new kind of wonderful.

The wedding ring I so optimistically slipped onto my finger long ago, the same one I despondently removed many years later, is now permanently retired. But I wear a small moonstone on my hand, the symbol of hope. Hope for healing in all its forms.

Neither of us sees the world in guarantees anymore. We recognize them as the comforting fictions they are. We accept that you can’t always keep the promises you made when you were barely above drinking age. You can’t know how you will change, or what life will throw at you.

Having our marriage fall apart and having disease come in and try very hard to kill me did away with our cozy assumptions that the future looks just like the past, but with more laugh lines. But he and I have learned, because we have had to, the difference between the illusion of security and the liberating joy of the present, between obligation and choice.

And choice, terrifying as it can be, is so much better. We had to leave each other to discover that: to understand what it really means to decide to be with a person, one day at a time, however many days there may be. Love isn’t a fortress. It isn’t a locked room. It’s full of doors and windows and escape hatches, and they’re not scary. They’re how, to paraphrase Leonard Cohen, the light gets in.

A few weeks ago, after an exhausting round of tests and doctor appointments, we flopped together into bed, almost too tired to speak. We watched the ceiling fan spin, lulled by its hypnotic rhythm, until at last he spoke just six words: “I’m glad I didn’t lose you.”

I looked into semidarkness at the man I love, the man I once left, and said, “I’m glad I didn’t lose you, too.”

Mary Elizabeth Williams, a senior writer for Salon, is working on a book about her cancer experience.

mercredi, septembre 04, 2013

ten years clean

"Go confidently in the direction of your dreams — live the life you've imagined."
-Henry David Thoreau (July 12, 1817 – May 6, 1862; born David Henry Thoreau), American author, development critic, naturalist, transcendentalist, pacifist, tax resister and philosopher.

Ten years ago, surgeons carved my malignant right kidney out of my body. Having cancer was the Krakatoa of my life. It led to my then-husband and I getting divorced, and set me on a path of change that forced me to evaluate what else I wanted out of (and in) my life. Since then, I've lived in Paris, gotten a Master's degree, changed careers, met the love of my life, had two beautiful children with him, and started a new adventure on the East Coast.  Each change has built a life better than what I knew before and reminded me that no matter what I endure, nothing will be as terrifying -- or as amazing -- as beating cancer.

Thank you to my partner Leo, my friends, my family, and my doctors for helping me live the life I've imagined. I'm hoping the next ten are as meaningful, passionate, and joyful as these have been.

mercredi, août 07, 2013

a first-person obituary

A gorgeous read, made all the more poignant by the fact that it is written in first person.
August 7, 2013
Obituary: Jane Catherine Lotter

One of the few advantages of dying from Grade 3, Stage IIIC endometrial cancer, recurrent and metastasized to the liver and abdomen, is that you have time to write your own obituary. (The other advantages are no longer bothering with sunscreen and no longer worrying about your cholesterol.) To wit:

I was born in Seattle on August 10, 1952, at Northgate Hospital (since torn down) at Northgate Mall. Grew up in Shoreline, attended Shorecrest High, graduated from the University of Washington in 1975 with a Bachelor of Arts in History. Aside from eight memorable months lived in New York City when I was nineteen (and where I worked happily and insouciantly on the telephone order board for B. Altman & Co.), I was a lifelong Seattle resident.

In my professional life, I was a freelance writer, editor, and proofreader. Among career honors, I received a First Place Society of Professional Journalists award for Humorous Writing for my column Jane Explains, which ran from 1999-2005 in the Jet City Maven, later called The Seattle Sun. Also won First Place in the Mainstream Novel category of the 2009 Pacific Northwest Writers Association Literary Contest for my comic novel, The Bette Davis Club (available at Amazon.com). I would demonstrate my keen sense of humor by telling a few jokes here, but the Times charges for these listings by the column inch and we must move on.

Many thanks to Sylvia Farias, MSW, at Swedish Cancer Institute for encouraging me to be part of an incredibly wise gynecological cancer support group. Thanks as well to the kind-hearted nurses and doctors at Group Health Capitol Hill oncology. And thanks to my sister Barbara who left no stone unturned in helping me get life-extending treatment in my final months.

I also want to thank Mrs. Senour, my first grade teacher, for teaching me to read. I loved witty conversation, long walks, and good books. Among my favorite authors were Iris Murdoch (particularly The Sea, The Sea) and Charles Dickens.

I was preceded in death by my generous and loving parents, Michael Gallagher Lotter and Margaret Anne Lotter (nee Robertson), and by my dear younger sister, Julie Marie Lotter. I am survived by my beloved husband, Robert ("Bob") Lee Marts, and our two adult children: daughter, Tessa Jane Marts, and son, Riley William Marts. Also my dear sisters Barbara Lotter Azzato, Kathleen Nora Lahti, and Patricia Anne Crisp (husband Adrian). And many much-loved nieces and nephews, in-laws, and friends.

I met Bob Marts at the Central Tavern in Pioneer Square on November 22, 1975, which was the luckiest night of my life. We were married on April 7, 1984. Bobby M, I love you up to the sky. Thank you for all the laughter and the love, and for standing by me at the end. Tessa and Riley, I love you so much, and I'm so proud of you. I wish you such good things. May you, every day, connect with the brilliancy of your own spirit. And may you always remember that obstacles in the path are not obstacles, they ARE the path.

I believe we are each of us connected to every person and everything on this Earth, that we are in fact one divine organism having an infinite spiritual existence. Of course, we may not always comprehend that. And really, that's a discussion for another time. So let's cut to the chase:

I was given the gift of life, and now I have to give it back. This is hard. But I was a lucky woman, who led a lucky existence, and for this I am grateful. I first got sick in January 2010. When the cancer recurred last year and was terminal, I decided to be joyful about having had a full life, rather than sad about having to die. Amazingly, this outlook worked for me. (Well, you know, most of the time.) Meditation and the study of Buddhist philosophy also helped me accept what I could not change. At any rate, I am at peace. And on that upbeat note, I take my mortal leave of this rollicking, revolving world-this sun, that moon, that walk around Green Lake, that stroll through the Pike Place Market, the memory of a child's hand in mine.

My beloved Bob, Tessa, and Riley. My beloved friends and family. How precious you all have been to me. Knowing and loving each one of you was the success story of my life. Metaphorically speaking, we will meet again, joyfully, on the other side.

Beautiful day, happy to have been here.

XOXO, Jane/Mom

dimanche, septembre 04, 2011

happy re-birthday to me

Today, I'm eight years kidney cancer-free. Lots has changed in my life since my diagnosis and treatment. I have much to be celebrate. I also have much to be sober about, including the current illness of my father (stage 4 bladder cancer) and other friends who are waging their own battles with pancreatic and breast cancers.

If nothing else, please do as I'm doing today -- take a moment to savor a wonderful meal, hug (and laugh with) your loved ones, and do something healthy for your mind/ body. None of us are promised tomorrow. But we can all make today glorious.

mercredi, mars 16, 2011

quotable

Cancer, I've found, is a passport to intimacy. It is an invitation, maybe even a mandate, to enter the most vital arenas of human life, the most sensitive and the most frightening, the ones that we never want to go to but when we do go there, we feel incredibly transformed. -- Bruce Feiler, author, father, and cancer survivor.

mercredi, janvier 12, 2011

on breastfeeding

My good friend and former roommate had breast cancer a few years ago. She's now in the process of trying to adopt. People invariably say the wrong thing, and weird things. I thought her post on the things smart, kind, well-meaning people say about breastfeeding (to someone who's had a double mastectomy, no less) was awesome on many levels.

One reason it resonated is because breastfeeding was one of the hardest, most frustrating experiences of my life. Leo and I took breastfeeding classes while I was pregnant and were able to cite the myriad benefits of breastfeeding. I wanted to have a breastfed, happy baby and was planning to do so for at least a year. My mommy friends were all great about saying that it's a tough thing for you and the baby to learn and get right -- even if everyone thinks it's "the most natural thing in the world." They were also right to say to get help -- from lactation consultants, other moms, and support groups.

When Seba was two days old, I remember holding him at 3 a.m. in the NICU and trying to get him to feed. He was hungry and not latching well. With the pillows, rocking chair, footstool, IV, wires, monitors, and everything else, I found that I was about three hands short of what I needed to position him properly. As my back and shoulders throbbed from contorting myself into a position that was supposed to work for feeding him, I wished for the many hands of Shiva. I looked down to see the few precious drops I was producing (my milk hadn't come in completely) rolling off of Seba's cheek and into my hospital gown. That was the first time I completely lost it while trying to feed him. The silent tears were profuse and my swollen eyes hurt almost as much as my C-section incision and tweaked back when I struggled back to my bed.

Over the next few days, we tried again and again and again and had a little better luck. I also pumped every two hours to help stimulate and establish my production, and that was yielding better results. Still, things weren't working as well as I had hoped. By the end of the week, Leo growled at the nurses who would bring us privacy screens any time I was breastfeeding Seba in the nursery because I "might want more privacy".

In spite of our plans and our efforts, Seba never latched well. It might have been that he was bottle-fed for that first week of his life because he was in the NICU. Or it might have been the damn brace he was in for his hip dysplasia for the first six months of his life. Or it might have been my letdown. Or it might have been something else.

Yes, we saw the lactation consultant three times a week for about six weeks.
Yes, we tried a supplemental nursing system.
Yes, my kind seamstress mother-(s)in-law made a custom nursing pillow to try and get Seba in the perfect position to nurse despite the hip brace. She also drove me to lactation appointments and even lent a hand whenever I needed it to get Seba into the proper position while nursing.
Yes, my baby screamed at me and cried whenever he was put to a breast -- he loved my milk from a bottle, by the way.
Yes, my breasts leaked horribly at the forceful letdown.
Yes, I took fenugreek and blessed thistle and all the recommended homeopathic herbs and foods to help my milk production remain high.
Yes, I felt like a failure for not being able to do something so "natural".
Yes, I cried as my milk production tapered to nothing after I took supplements and pumped with a hospital-grade pump every 2-4 hours AROUND THE CLOCK for nearly 4 months.
And, yes, I finally learned to stop measuring my motherhood in ounces.

So, yes. As I told my roommate, skipping the hardest, most frustrating experience of motherhood is not necessarily a bad thing.

Today, I will feed Seba the last 3 ounces of the freezer stash of breastmilk. I'm grateful to have been able to give him what I could, but hope that I don't have the same issues with our next child. Beyond the emotional component of breastfeeding, there was the sheer exhaustion borne of spending 25 minutes every 2-4 hours pumping, and 25 minutes every 2-3 hours bottlefeeding our son. Leo was amazing in the process and helped a great deal. Still, when I realize that I basically doubled my sleep deprivation/ feeding time by having to pump and to feed, it's no wonder that I was a zombie for the fourth trimester.

For those who are interested, here's my friend's post on the topic:
Some Perks of Not Breast Feeding
Sometimes smart, kind, well-meaning people say stupid and insensitive things.

As an example, about 6 months ago I was doing some house-related shopping. The charming (no sarcasm intended) sales lady asked, "do you have or plan to have children?" At which point I gave her a quick explanation of my parental status. No kids yet. I'm adopting. Could happen tomorrow or in five years. And, oh yes, I've pretty much always wanted to adopt at least one kid -- my friends from high school are in no way shocked by this decision -- so when I was diagnosed and told this meant I was not allowed to get pregnant and take some of my post-chemo meds (you take them for 5 years) adoption was an easy and obvious choice. And, no, I did not have any eggs frozen or even consider that. "But you might be able to get pregnant later? Because, you should experience breast feeding if you can. It's such a great bonding experience." No, I'm not kidding. She didn't just talk about the joys of pregnancy, she specifically identified the joys of breast feeding. One minor problem with that: I had a double mastectomy. The only thing coming out of these guys is saline.

Even in my post-breast-cancer days, I've heard many stories about why breast feeding is just the best experience ever and how it really cements maternal bonds. Though, a good friend called me one day to say, "in case you were wondering, I hate breast feeding and wouldn't do it if I could get away with it." This, of course, got me thinking about possible benefits of my particular situation. As usual, if anyone else wants to share thoughts, please do so. And, no, you don't need to tell me about why breast feeding is good. I am actually pretty familiar with all of that.

(1) There is no reason I have to be the one to always get up in the middle of the night to feed the baby. A baby is a very compelling reason to get out of bed, and certainly I plan to take on my fair share of 3 a.m. feedings. But, I'll have less moments of mild resentment while I look over at my sleeping husband than the average new mommy.
(2) Speaking of this, along the lines of feeding=bonding, my husband will be seen as equally able of meeting essential needs in the eyes of our little one (who has no concept of $$$), and will get equal bonding opportunity. My husband is pretty nifty. I don't mind sharing with him. He deserves equal adoration.
(3) No need to pump, find a place to pump, find a place to store pumped milk, etc.
(4) No milk leaking onto my dry clean only work wardrobe. Also, no need to worry about leaking in front of a client, judge, boss, etc.

P.S. The woman carrying the baby in the cute little onesie at a breast cancer awareness march that says "I'm a breast man," probably didn't have a mastectomy.

vendredi, septembre 10, 2010

danny & annie

The most moving romance you'll ever see (in five minutes, no less).
Danny Perasa and his wife, Annie, came to StoryCorps to recount their twenty-seven-year romance. As they remember their life together from their first date to Danny’s final days with terminal cancer, these remarkable Brooklynites personify the eloquence, grace, and poetry that can be found in the voices of everyday people when we take the time to listen.

samedi, février 27, 2010

environmental links to autism, cancer, etc.?

I recently posted the article below to Facebook and got a few comments from friends. One called the article pure speculation. Another pointed out the danger of these types of articles to parents desperate to find a "cure" and improve the lives of their children with autism -- his parents tried chelation therapy on his brother, and it made things "10x worse". Here is how I responded to the comments that were posted, and more about my mindset and motives for sharing the article.

O, your family has endured so much. Over the years, I've been sad each time I hear about what's happening with your brother and the toll it takes on all of you. I can't begin to imagine what it has done to each of you.

D, I don't think pure speculation makes sense. I also don't think the tone of Kristof's article is about pure speculation. He's citing mainstream scientific work and makes a point of calling out that we just don't know enough yet to draw a conclusion. He's doing what he believes is his duty as a journalist, asking questions in the interest of the public. Lastly, he's not some fringe crackpot -- he's a responsible journalist who also happens to have won two Pulitzer prizes.

So where does this leave us? I've seen the FDA and other federal agencies fail to acknowledge the growing number of studies proving that phthalates, organic solvents, Bisphenol-A, etc. are hormone disruptors. Do these chemicals cause autism? Who knows? But when I consider that each study is looking at a chemical in isolation, and not evaluating the aggregate effect of all of the chemicals to which we're exposed, I cringe. And every so often, I cheer, as I did when public pressure forced the FDA to pay attention to BPA and other substances that are finally being acknowledged for making epigenetic changes that lead to cancer.

Meanwhile, like Nicholas Kristof, I've adopted the precautionary principle. That's for a few reasons. The biggest is my own health history (kidney cancer at 28 with no genetic factors in play -- as confirmed by recent tests). The others boil down to:
  1. My skepticism about whether government interests beholden to lobbyists are really going to be neutral and act in the best interest of the public (DDT, smoking, and Agent Orange come to mind) -- which is why I tend to look at the EU's response to many of these policy questions
  2. Luck in having the income level to afford to spend more (because all of this costs more)
  3. My own tendency to choose the 'safer' option, rather than the riskier one.
For me, the precautionary principle means that:
  • I eat on and drink out of glass/ceramic/ porcelain/ stainless steel, when possible. (And not just because it's phthalate-free, but because it's much greener than plastic or styrofoam.)
  • I limit my exposure, when possible, to heavy metals [insert Beavis and Butthead joke here] because mercury and other heavy metals are known neurotoxins and I really don't need the mercury exposure that happens via conventional mascara and certain fish.
  • I've eliminated most shampoos, lotions, and cosmetics that are chock-full of the nasties (phthalates, parabens, mercury, lead, fragrances). (The EU has much more stringent labeling requirements and has already banned most of these substances in cosmetics and requires much more stringent labeling than the US does.)
  • I eat organic and local, when possible. I know my farmer and his family and trust the produce he delivers via my CSA share. I drink organic milk and eat organic meat whenever it's an option. Part of it is because there might be pesticide residues in the food. Part of it is because organic is much better for the environment and the people growing it than petrochemical-fertilized-and-transported food. And part of it is because I think the taste, quality, and freshness are better.
  • I'll choose organic or second-hand clothes for my children (when I eventually have them), because they don't need to be exposed to the hormone disruptors and neurotoxins present in the flame retardants that conventional new baby and kid's clothes sold in the US have on them. (The EU has banned the flame retardants on kid's clothing, in mattresses, etc.)
  • I'll vaccinate my kids, but will spread out those vaccinations as much as possible and probably postpone vaccines like Hep B until the children are older (it is given to every infant these days a few days after birth), because the probability of an infant contracting Hep B is so unlikely that it just doesn't make sense.
Op-Ed Columnist: Do Toxins Cause Autism?
By NICHOLAS D. KRISTOF
Published: February 24, 2010

Autism was first identified in 1943 in an obscure medical journal. Since then it has become a frighteningly common affliction, with the Centers for Disease Control reporting recently that autism disorders now affect almost 1 percent of children.

Over recent decades, other development disorders also appear to have proliferated, along with certain cancers in children and adults. Why? No one knows for certain. And despite their financial and human cost, they presumably won’t be discussed much at Thursday’s White House summit on health care.

Yet they constitute a huge national health burden, and suspicions are growing that one culprit may be chemicals in the environment. An article in a forthcoming issue of a peer-reviewed medical journal, Current Opinion in Pediatrics, just posted online, makes this explicit.

The article cites “historically important, proof-of-concept studies that specifically link autism to environmental exposures experienced prenatally.” It adds that the “likelihood is high” that many chemicals “have potential to cause injury to the developing brain and to produce neurodevelopmental disorders.”

The author is not a granola-munching crank but Dr. Philip J. Landrigan, professor of pediatrics at the Mount Sinai School of Medicine in New York and chairman of the school’s department of preventive medicine. While his article is full of cautionary language, Dr. Landrigan told me that he is increasingly confident that autism and other ailments are, in part, the result of the impact of environmental chemicals on the brain as it is being formed.

“The crux of this is brain development,” he said. “If babies are exposed in the womb or shortly after birth to chemicals that interfere with brain development, the consequences last a lifetime.”

Concern about toxins in the environment used to be a fringe view. But alarm has moved into the medical mainstream. Toxicologists, endocrinologists and oncologists seem to be the most concerned.

One uncertainty is to what extent the reported increases in autism simply reflect a more common diagnosis of what might previously have been called mental retardation. There are genetic components to autism (identical twins are more likely to share autism than fraternal twins), but genetics explains only about one-quarter of autism cases.

Suspicions of toxins arise partly because studies have found that disproportionate shares of children develop autism after they are exposed in the womb to medications such as thalidomide (a sedative), misoprostol (ulcer medicine) and valproic acid (anticonvulsant). Of children born to women who took valproic acid early in pregnancy, 11 percent were autistic. In each case, fetuses seem most vulnerable to these drugs in the first trimester of pregnancy, sometimes just a few weeks after conception.

So as we try to improve our health care, it’s also prudent to curb the risks from the chemicals that envelop us. Senator Frank Lautenberg of New Jersey is drafting much-needed legislation that would strengthen the Toxic Substances Control Act. It is moving ahead despite his own recent cancer diagnosis, and it can be considered as an element of health reform. Senator Lautenberg says that under existing law, of 80,000 chemicals registered in the U.S., the Environmental Protection Agency has required safety testing of only 200. “Our children have become test subjects,” he noted.

One peer-reviewed study published this year in Environmental Health Perspectives gave a hint of the risks. Researchers measured the levels of suspect chemicals called phthalates in the urine of pregnant women. Among women with higher levels of certain phthalates (those commonly found in fragrances, shampoos, cosmetics and nail polishes), their children years later were more likely to display disruptive behavior.

Frankly, these are difficult issues for journalists to write about. Evidence is technical, fragmentary and conflicting, and there’s a danger of sensationalizing risks. Publicity about fears that vaccinations cause autism — a theory that has now been discredited — perhaps had the catastrophic consequence of lowering vaccination rates in America.

On the other hand, in the case of great health dangers of modern times — mercury, lead, tobacco, asbestos — journalists were too slow to blow the whistle. In public health, we in the press have more often been lap dogs than watchdogs.

At a time when many Americans still use plastic containers to microwave food, in ways that make toxicologists blanch, we need accelerated research, regulation and consumer protection.

“There are diseases that are increasing in the population that we have no known cause for,” said Alan M. Goldberg, a professor of toxicology at the Bloomberg School of Public Health at Johns Hopkins University. “Breast cancer, prostate cancer, autism are three examples. The potential is for these diseases to be on the rise because of chemicals in the environment.”

The precautionary principle suggests that we should be wary of personal products like fragrances unless they are marked phthalate-free. And it makes sense — particularly for children and pregnant women — to avoid most plastics marked at the bottom as 3, 6 and 7 because they are the ones associated with potentially harmful toxins.

lundi, septembre 07, 2009

toxic exposures and the secret history of the war on cancer

***Update: My test results came back negative. The good scientists at John's Hopkins are 97% certain that I do not have genetic abnormalities consistent with VHL.

Six years ago last Friday, surgeons carved my right kidney out of my body, removing malignant cells that, left untreated, would have led to certain death. The tumors that my doctors later biopsied indicated that I had the most common form of kidney cancer - clear cell. My medical record was updated to read "T1N0M0".

After absorbing the shock of my diagnosis and proceeding to my straightforward and relatively easy treatment (I say that because I have many friends who endured much worse in their battles with cancer), I was left with two key questions:
  1. Why did this happen?
  2. And how do I keep it from happening again?
To answer these questions, I had to learn a great deal more about my cancer. The American Cancer Society's Cancer Facts & Figures 2009 will tell you that kidney cancer is the seventh most common cancer in the US; the five-year survival rate is about 67%. It will also provide trend data for who the "typical" kidney cancer patient is.

The American Society for Clinical Oncology explains how cells mutate and the role that genes play:
Genes control how a cell functions, including how quickly it grows, how often it divides, and how long it lives. To control these functions, genes produce proteins that perform specific tasks and act as messengers for the cell. Therefore, it is essential that each gene have the correct instructions or "code" for making its protein so that the protein can perform the proper function for the cell.

Cancer begins when one or more genes in a cell are mutated (changed), creating an abnormal protein or no protein at all. The information provided by an abnormal protein is different from that of a normal protein, which can cause cells to multiply uncontrollably and become cancerous.

A person may either be born with a genetic mutation in all of their cells (germline mutation) or acquire a genetic mutation in a single cell during his or her lifetime. An acquired mutation is passed on to all cells that develop from that single cell (called a somatic mutation). Most kidney cancers (about 95%) are considered sporadic, meaning that the damage to the genes occurs by chance after a person is born. Inherited kidney cancers are less common (about 5%) and occur when gene mutations are passed within a family, from one generation to the next.
The Massachusetts Department of Public Health has correlated environmental factors (smoking, obesity, and occupational hazards such as asbestos, cadmium, organic solvents, and petroleum) with kidney cancer, yet stops short of proclaiming causality. (Agent Orange is another suspect substance.) You'll notice that although researchers can characterize the abnormal growth and correlate the incidence of cancer with genetics and some substances, they can't tell us with certainty what causes it. Part of that is because more research needs to occur, but can't because industry and government make it difficult for that research to take place (see the article below).

Barbara Ehrenrich's amazing essay, Welcome to Cancerland, forever changed how I think about the role of the environment in my health. It also set me down a path to try and answer the Why and How questions I grappled with immediately after diagnosis. But like most cancer patients, I'll probably never know exactly what caused my body to turn on itself when I was 28. However, unlike most cancer patients, I've gotten a step closer to knowing if my genes are the reason for my illness.

A few months ago, I saw a genetic counselor. I chose to do so because Leo and I hope to start a family soon. I wanted to know the risk factors for certain hereditary conditions. Most of all, I wanted to know if my cancer was something that I could pass on to our children. Over the years, I've casually researched the topic and given up the hope of ever finding out if there was a genetic basis for my cancer, in short because every time I broached the topic with medical professionals, they would immediately tell me that I'd already had kidney cancer, so they already knew I was at a higher risk for having it. With this context, you can only imagine how dumbfounded I was when, after asking me a series of questions, the genetic counselor asked if I had heard of Von Hippel-Lindau Syndrome (VHL) and suggested that I be tested for it.

Last week, the counselor called me back to let me know that my HMO had agreed for me to be tested for VHL because it is the most common cause of clear cell kidney cancer (and a host of other life-threatening issues). Setting aside the interesting Hatfield-McCoy connection, it's some seriously scary stuff. If I do have it, those same skeptical medical professionals will now need to routinely screen me for a whole host of other medical issues that have nothing to do with my cancer history. Also, if I do have the VHL genetic mutation, there's a 50% chance that I'll pass it along to my children.

Setting VHL aside, I'm still unsure if the mutation that caused my cancer (whether it occurred in me or started in my parents or grandparents) happened because of something I ate, drank, breathed, or absorbed. All of this puts me back at square one in this maddening, dizzying recursive loop of what triggered the chain of events that led to my current health.

So ... I'm back to casually researching the connections between cancer and our environment and disgusted to see how, for the past century, our government and industry have failed to act on existing knowledge about the environmental causes of cancer. Read on to learn more about the ugly toxic exposures and the secret history of the war on cancer ...
Theories of cancer: How paradigms shift and culprits change in the fight against the disease, and what concerned citizens can do about it
Sandra Steingraber -- From The Times Literary Supplement
January 30, 2008

Devra Davis
SECRET HISTORY OF THE WAR ON CANCER
505pp. Basic Books. £16.99.
978 0 465 01566 5

Phil Brown
TOXIC EXPOSURES
Contested illnesses and the environmental health movement
356pp. New York: Columbia University Press. £19 (US $29.50).
978 0 231 12948 0

One advantage of being a long-time cancer survivor – besides the obvious – is that it provides a front-row seat in the auditorium of ideas about the disease’s causation. Theories go in and out of fashion over the years, paradigms shift this way and that, and the patient is viewed differently by the medical community depending on which idea is currently on top.

I was diagnosed with bladder cancer in 1979, when I was twenty years old and just at the beginning of my career as a biologist. At that time, US newspaper headlines featured Love Canal, the upstate New York community whose residents had been evacuated a year earlier when 20,000 tons of industrial chemicals were discovered buried under their basements. Toxic-waste activism in the United States was in the ascendant, the newly formed US Environmental Protection Agency was committed and passionate, and major environmental legislation had been recently enacted by Congress to defend clean air and clean water in the name of human health.

After breaking the bad news from the pathology lab, my urologist asked me about tyres: automobile tyres. Had I ever vulcanized tyres? His second question was about textile dyes. Any exposure to the colour yellow? And had I ever worked in the aluminium industry?

Back at the university, I began to research the causes of bladder cancer. Indeed, there were data on dyes and bladder cancer going back to the nineteenth century. In fact, there was absolute proof that certain textile dyes caused bladder cancer in humans. And yet, mysteriously, this evidence had not resulted in the abolition of these chemicals from the economy. Other suspected bladder carcinogens, for which the evidence was highly troubling, if not outright damning, were produced and used by the industries in my home town. The National Cancer Institute was generating maps of cancer mortality in an attempt to unveil other possible environmental carcinogens that could explain rising rates of cancer.

And then Ronald Reagan was elected President, and everything changed. No one asked me any more about my possible environmental exposures. In fact, by the mid-1980s, I was hard-pressed to find the word “carcinogen” in any pamphlet on cancer that I collected from my doctors’ various offices. Meanwhile, in the medical literature, the search for cancer clusters that might point towards environmental contributors became a disparaged practice. The new focus of the National Cancer Institute was on “lifestyle” explanations for cancer.

As a young adult I hadn’t really had enough time to develop bad habits. In fact, I was a vegetarian who ran four miles a day. Thus there was no explanation for my situation. “Some kind of fluke”, said one of my doctors. Wherever I lived, I dutifully submitted to cancer check-ups. By the 1990s, the new explanation for cancer was genetic, and I started receiving lots of questions from young intake doctors about my family history. I had fun with this. I would describe in detail my mother, diagnosed with breast cancer, my various uncles with prostate and colon cancers, and – the crowning point – my aunt who died of the same kind of bladder cancer that I had. The young doctors took furious notes. I would always pause a few beats before adding, “Oh yeah. And I’m adopted”. (There is no evidence for a hereditary link to bladder cancer. And there never has been.)

Today, I’m a forty-eight-year-old professor in Ithaca, New York, and during my last renal ultrasound, the technician asked me casually if I’d ever worked with textile dyes. I suppose Al Gore should get the credit: the environment is once again on the collective radar screen.

Two new books expose and explicate the ongoing social contest that is at the heart of our shifting understanding about cancer. They are both important and deserve to be read together. Devra Davis’s book examines the historical forces at work when doubt is cast on the environmental evidence. Phil Brown’s book explores the opposing social movements that are struggling to rescue this evidence and to bring about public health policy change based on it.

Devra Davis’s Secret History of the War on Cancer is a big, sprawling book whose argument is more implicit than it should be. Her autobiographical style – which served her so well in her earlier treatise on public health, When Smoke Ran Like Water – often gets in the way of her analysis here. Nevertheless, Davis, who directs the Center for Environmental Oncology at the University of Pittsburgh Cancer Institute, is an epidemiologist and public-health scientist at the top of her game. In her new book, she reveals what she knows about the interlocking structures of government and corporate interests, and how these relationships have affected the social construction of knowledge about cancer. Davis deserves to be taken seriously as a former adviser to the World Health Organization, a public-health servant in both the Carter and the Clinton Administrations, and the founding director of the Board on Environmental Studies and Toxicology in the National Academy of Sciences.

The basic thesis of this book is that 1.5 million lives have been lost, because Americans failed to act on existing knowledge about the environmental causes of cancer. This failure has been created by at least eight different factors, both acting together and independently of each other. The first is the cowardice of research scientists, who publish thoroughly referenced reports but pull their punches at the end, by claiming that more research needs to be done before action can be taken. Statements like these are then exploited by those who profit from the status quo. Like the cigarette industry during the 1960s, the chemical industry has learned how to buy time and create wholesale public doubt from small data gaps and remaining scientific uncertainties.

Meanwhile, Davis argues, regulatory agencies have become unresponsive to new scientific evidence altogether. Hamstrung by small-government-is-better reforms of the Reagan Administration, environmental and public agencies shrank even as the science began pointing to the need for more regulation. As for the government agencies and charities whose mission it is to eradicate cancer, these institutions, too, have had meaningful work on cancer prevention compromised by corporate interests. Throughout the 1980s, for example, the chief executive officer of Occidental Petroleum served as the chair of the National Cancer Institute’s advisory board. Ultimately, the so-called War on Cancer is not really a war at all, argues Davis, but a cunning re-enactment.

The evolutionary history of epidemiology itself has also played a role in muffling the evidence for environmental harm. With its necessary focus on workers – who are exposed to the highest amounts of suspected carcinogens – epidemiologists require access to industry. The price for access, too often, is the promise of secrecy. Having struck a Faustian bargain, occupational epidemiologists can have – and have had – their funds withdrawn if they go public with their results.

A further factor involves the court system. Davis shows brilliantly the ways in which various kinds of scientific evidence – such as animal research – have been gradually declared inadmissible in legal cases, thanks to clever lawyering. “Basically”, says Davis, “before you can collect damages, you must get cancer or some other awful disease, show that someone else already got it from the same things you did, prove that you had specific exposures to a particular agent, find the firm that caused your harm and can now pay for it, and prove that they knew the exposure was harmful.”

The last two factors involve outright harassment of researchers, including Davis herself, and plain old terrible timing, which has occurred at least twice in the last century, as when major treatises on the environmental contributors to cancer were released, first on the brink of the First World War, and then again right before the Second World War. Indeed, Davis’s crowning achievement with this book is her resuscitation of old publications, along with secret memos and various other original manuscripts, which show how much we used to know about the role that chemical exposures play in the burden of cancer. Some of these were subsequently doctored to serve particular purposes.

The Secret History of the War on Cancer is a remarkable piece of sleuthing from one of our most brave and knowledgeable scientists, on a topic that affects millions. Having closed Davis’s book, one should immediately open Phil Brown’s Toxic Exposures, which focuses on the ways in which environmental- health activists and their advocates in science are challenging the carcinogen-deniers that Davis writes about. Like Devra Davis, Brown, a medical sociologist at Brown University, has been a researcher in the field of environmental health for several decades, beginning with his groundbreaking work on the Woburn cancer cluster, made famous in the Hollywood movie A Civil Action. His new book represents many years of work. Toxic Exposures can be read as a guidebook for those wishing to understand the environmental-health movement, which, according to Brown, is the Civil Rights movement of our times. As he demonstrates, almost all cases of cancer clusters and contaminated communities, from Love Canal onwards, have been discovered by citizen activists – not by scientists, nor government agencies. This is because no governmental agency or scientific body engages in routine surveillance that would uncover sentinel health events. It is also because cancer registries, which could function as early-warning systems, publish their results in obscure almanacs and do not actively investigate communities where cancer rates are elevated. Often, as Brown notes, these communities are never even informed that their cancer rates are statistically excessive.

But, in the cases where citizens have engaged in their own lay epidemiology and have become environmental detectives in their own communities, new avenues of scientific research have been made possible, which, in turn, have spurred on better environmental decisions. When sympathetic scientists work hand in hand with these activists, new forms of knowledge are created that challenge the lifestyle and hereditary foci of conventional epidemiology.

In one my favourite examples from the book, Brown describes how science alone failed to produce regulations sufficient to reduce lead poisoning among children. It was only the efforts of black and Latino rights groups – most notably the Black Panthers and the Young Lords – in the 1960s that finally led to the social changes necessary to get lead away from children’s brains. Once that happened, science had the human experiment it needed to prove that exposures to an environmental toxicant at levels once considered acceptable and unavoidable were not safe or necessary after all.

Brown’s book systematically examines citizen-science alliances in three disease areas: breast cancer, asthma and Gulf War Syndrome as reported by US veterans of the first Iraq war. While individual readers who are not sociologists will no doubt be drawn, by personal experience, to one of the three, all offer important lessons about the construction of scientific knowledge. It was fascinating to learn, for example, how environmental -justice activists working on asthma clusters in urban areas are now forcing scientists to investigate the health effects of very fine particles, which are not yet regulated by the Environmental Protection Agency.

In the end, Phil Brown’s analysis of contested illnesses makes a strong case for better health tracking to monitor diseases, and better chemicals tracking to monitor the flow of hazardous substances in consumer goods, in the jet stream, in our groundwater, and in our tuna-fish sandwiches. Toxic Exposures also makes clear that neither will happen without citizen participation in the scientific process.

Sandra Steingraber is the author of Living Downstream: An ecologist looks at cancer and the environment, 1997, and Having Faith: An ecologist's journey to motherhood, 2001.

vendredi, mai 15, 2009

patenting genes

This is ridiculous.
Cancer Patients Challenge the Patenting of a Gene
By JOHN SCHWARTZ
Published: May 12, 2009

When Genae Girard received a diagnosis of breast cancer in 2006, she knew she would be facing medical challenges and high expenses. But she did not expect to run into patent problems.

Genae Girard, 39, is suing Myriad Genetics and the Patent Office over the granting of a patent on a gene. Myriad also has patented the only test that measures the risk of breast and ovarian cancer.

Ms. Girard took a genetic test to see if her genes also put her at increased risk for ovarian cancer, which might require the removal of her ovaries. The test came back positive, so she wanted a second opinion from another test. But there can be no second opinion. A decision by the government more than 10 years ago allowed a single company, Myriad Genetics, to own the patent on two genes that are closely associated with increased risk for breast cancer and ovarian cancer, and on the testing that measures that risk.

On Tuesday, Ms. Girard, 39, who lives in the Austin, Tex., area, filed a lawsuit against Myriad and the Patent Office, challenging the decision to grant a patent on a gene to Myriad and companies like it. She was joined by four other cancer patients, by professional organizations of pathologists with more than 100,000 members and by several individual pathologists and genetic researchers.

The lawsuit, believed to be the first of its kind, was organized by the American Civil Liberties Union and filed in federal court in New York. It blends patent law, medical science, breast cancer activism and an unusual civil liberties argument in ways that could make it a landmark case.

Companies like Myriad, based in Salt Lake City, have argued that the patent system promotes innovation by giving companies the temporary monopoly that rewards their substantial investment in research and development.

Richard Marsh, Myriad’s general counsel, said company officials would not be able to comment on the lawsuit until they had fully reviewed the complaint.

The coalition of plaintiffs argues that gene patents actually restrict the practice of medicine and new research.

“With a sole provider, there’s mediocrity,” said Wendy K. Chung, the director of clinical genetics at Columbia University and a plaintiff in the case.

Dr. Chung and others involved with the suit do not accuse Myriad of being a poor steward of the information concerning the two genes at issue in the suit, known as BRCA1 and BRCA2, but they argue that BRCA testing would improve if market forces were allowed to work.

Harry Ostrer, director of the human genetics program at the New York University School of Medicine and a plaintiff in the case, said that many laboratories could perform the BRCA tests faster than Myriad, and for less money than the more than $3,000 the company charged.

Laboratories like his, he said, could focus on the mysteries still unsolved in gene variants. But if he tried to offer such services today, he said, he would be risking a patent infringement lawsuit from Myriad.

Christopher A. Hansen, senior national staff counsel for the civil liberties union, said the problem was with the patent office, not the company. He recalled that when he first heard that the office had granted a patent for a gene, “I said that can’t be true.”

As the A.C.L.U. explored the restrictions on competition that companies like Myriad had put in place — blocking alternatives to the patented tests, and even the practice of interpreting or comparing gene sequences that involved those genes — the restrictions started to look like not just a question of patent law, Mr. Hansen said, but of the First Amendment’s guarantee of free speech as well.

“What they have really patented,” he said, “is knowledge.”

A patent was also granted to a single company for genetic testing on long QT syndrome, which can lead to heart arrhythmias and sudden death, and to the HFE gene, linked to hereditary hemochromatosis, a condition in which iron accumulates in the blood and can cause organ damage. Doctors and scientists have complained about both patents.

On the other hand, the company that owns the patent to the gene CFTR, which has been linked to cystic fibrosis, has licensed the testing to dozens of laboratories, drawing praise from the medical world.

The decision to allow gene patents was controversial from the start; patents are normally not granted for products of nature or laws of nature. The companies successfully argued that they had done something that made the genes more than nature’s work: they had isolated and purified the DNA, and thus had patented something they had created — even though it corresponded to the sequence of an actual gene.

The argument may have convinced patent examiners, but it has long been a sore point for many scientists. “You can’t patent my DNA, any more than you can patent my right arm, or patent my blood,” said Jan A. Nowak, president of the Association for Molecular Pathology, a plaintiff in the case.

So far, however, two panels of government experts who have looked at the issue have not found significant impediments to research or medical care caused by gene patents. A 2006 report from the National Research Council found that patented biomedical research “rarely imposes a significant burden for biomedical researchers.”

That report and others, however, warn that the patent landscape “could become considerably more complex and burdensome over time.”

In the future, genetic tests are likely to involve the analysis of many genes at once, or even of a person’s full set of genes. Some 20 percent of the human genome is already included in patent claims, amounting to thousands of individual genes, says a draft report from the National Institutes of Health. The report warns that “it may be difficult for any one developer to obtain all the needed licenses” to develop the next generations of tests.

For Lisbeth Ceriani, a single mother from Newton, Mass., and a plaintiff in the case against Myriad, the biggest obstacle that gene patents present is one of cost. She has had breast cancer and a double mastectomy, but wants to have BRCA testing to determine her risk of ovarian cancer and help her decide whether to have her ovaries removed. But Myriad has refused to work with her insurance plan, Mass Health, and paying for the test herself is beyond her means.

She is reluctant to have surgery that might prove unnecessary, she said, but she also worries about her 8-year-old daughter and the inherited risk she might face. Which is why, Ms. Ceriani said, she wants to “find out if I have the mutation, so I can take the necessary steps to stay on the planet.”

“I want to be here,” she said, “to make sure she does her screening by the time she’s 30.”

mardi, avril 07, 2009

dna test for cervical cancer

I'd love to take this test instead of getting into the stirrups.
DNA Test Outperforms Pap Smear
By DONALD G. McNEIL Jr.
April 7, 2009

A new DNA test for the virus that causes cervical cancer does so much better than current methods that some gynecologists hope it will eventually replace the Pap smear in wealthy countries and cruder tests in poor ones.

Not only could the new test for human papillomavirus, or HPV, save lives; scientists say that women over 30 could drop annual Pap smears and instead have the DNA test just once every 3, 5 or even 10 years, depending on which expert is asked.

Their optimism is based on an eight-year study of 130,000 women in India financed by the Bill and Melinda Gates Foundation and published last week in The New England Journal of Medicine. It is the first to show that a single screening with the DNA test beats all other methods at preventing advanced cancer and death.

The study is “another nail in the coffin” for Pap smears, which will “soon be of mainly historical interest,” said Dr. Paul D. Blumenthal, a professor of gynecology at Stanford medical school who has tested screening techniques in Africa and Asia and was not involved in the study.

But whether the new test is adopted will depend on many factors, including hesitation by gynecologists to abandon Pap smears, which have been remarkably effective. Cervical cancer was a leading cause of death for American women in the 1950s; it now kills fewer than 4,000 a year.

In poor and middle-income countries, where the cancer kills more than 250,000 women a year, cost is a factor, but the test’s maker, Qiagen, with financing from the Gates Foundation, has developed a $5 version and the price could go lower with enough orders, the company said.

“The implications of the findings of this trial are immediate and global,” Dr. Mark Schiffman of the National Cancer Institute wrote in an editorial accompanying the study. “International experts in cervical cancer prevention should now adopt HPV testing.”

At the moment, there are huge gaps in how rich and poor countries screen.

In the West, women get smears named for their inventor, Dr. Georgios Papanikolaou. Cells are scraped from the cervix and sent to a laboratory, where they are stained and inspected under a microscope by a pathologist looking for abnormalities. Results may take several days.

The DNA screen also needs a cervical scraping, but it is mixed with re-agents and read by a machine.

In poor countries, most women get no routine screening. Pain sends them to a hospital, by which time it is often too late.

But in some countries, women get “visualization,” pioneered in the last decade, also with Gates Foundation support: a health worker looks at the cervix with a flashlight and swabs it with vinegar. Spots that turn white may be precancerous lesions, and are immediately frozen off. Diagnosis and treatment take only one visit.

Pap smears fail in the third world because there are too few trained pathologists and because women told to return often cannot.

The Indian study, begun in 1999, divided 131,746 healthy women ages 30 to 59 from 497 villages into four groups. One group, the control, got typical rural clinic care: advice to go to a hospital if they wanted screening. The second got Pap smears, the third got flashlight-vinegar visualization, and the fourth got a DNA test, then made by Digene, which is now owned by Qiagen. The company did not pay for or donate to the study, its authors said.

After eight years, the visualization group had about the same rates of advanced cancer and death as the control group. The Pap-smear group had about three-fourths the rates, and the DNA test had about half.

Significantly, none of the women who were negative on their DNA test died of cervical cancer. “So if you have a negative test, you’re good to go for several years,” Dr. Blumenthal said.

The study’s chief author, Dr. Rengaswamy Sankaranarayanan of the International Agency for Research on Cancer in Lyon, France, said, “With this test, you could start screening women at 30 and do it once every 10 years.”

Asked whether that advice would apply in the United States, Debbie Saslow, director of gynecologic cancer for the American Cancer Society, replied, “Absolutely no.”

“A negative test would mean a woman’s chances of developing cancer are small, but not zero,” she added. “But if he’d said five years, I wouldn’t have a strong reaction.”

Since 1987, she said, the cancer society and the American College of Obstetricians and Gynecologists have recommended Pap smears only every three years after initial negative ones. In 2002, they recommended the HPV test too, and evidence is mounting that the Pap smear can be dropped.

“But we haven’t been able to get doctors to go along,” Dr. Saslow said. “The average gynecologist, especially the older ones, says, ‘Women come in for their Pap smear, and that’s how we get them in here to get other care.’ We’re totally overscreening, but when you’ve been telling everyone for 40 years to get an annual Pap smear, it’s hard to change.”

Dr. Sankaranarayanan said most European countries screen every three to five years, and many do not start before age 30.

Cervical cancer is caused by a few of the 150 strains of the human papillomavirus. Women pick strains up as soon as they start having intercourse, but more than 90 percent of cases clear up spontaneously within two years. Early DNA tests would find these, but lead to useless overtreatment. So in women ages 20 to 30, doctors often order repeat Pap tests, which is expensive but may catch the tiny minority of cancers that develop in less than 15 years.

“The U.S. has high resources and low risk-tolerance,” Dr. Schiffman explained, while countries like India have little money and are forced to tolerate risk.

Dr. Jan Agosti, the Gates Foundation officer overseeing its third world screening, said Qiagen’s new $5 test — which proved itself in a two-year study in China — runs on batteries without water or refrigeration, and takes less than three hours. In countries where women are “shyer about pelvic exams,” she added, it even works “acceptably well” on vaginal swabs they can take themselves.