I haven’t posted lately and this time I have an excellent reason for that.
I was relaxing (see above) in the biologically diverse paradise we gringos call Costa Rica.
I’ll write about it and post some pictures soon, but now I need to find some groceries.
I’ve got this issue. Actually, there are some reliable sources out there who would argue that I am in no way restricted to just one issue. But I have this one issue that has just been bugging me for, well, let’s say, three or four years now.
It has to do with how we mortals deal with the serious illnesses of those we are close to.
Now, my judgement is admittedly blurry on this one. It was this revelation that made me think that maybe the issue is mine and not anyone else’s.
I’d say, up till I was diagnosed with cancer in 04, I had a sort of regular exposure to death. I would say I had more exposure to human misery than most folks, because of the nature of my work. But I didn’t feel surrounded by death.
And then I got sick. And then I got to feel what it’s like to not be a regular person. And then I got to experience what it’s like to have some people remove you from the category of regular mortals because they have, more or less, already written you off for dead.
I get very, very tetchy these days when I hear anyone who is neither a patient nor a trained medical professional in a lab coat saying anyone else is about to die.
I actually blew a small gasket at a staff meeting last year when a co-worker stated with great confidence that one of our clients was about to die.
Kind of got hot under the collar and explained, with flapping arms, how completely insulting and chilly it is when people write you off as essentially no longer among the living.
I’ve been thinking about this issue a lot. It’s been the blog post I have been writing in my head for at least the last 2 months.
See, I had decided that people who aren’t sick become completely freaked out about the possibility of the death of a loved one that they make these great sweeping pronouncements about the amount of time the other person has left on their clock.
I figured this was because we, as a culture, can’t speak about death except to say that maybe some god type figure will reward you with harps and puppies or hundreds of virgins or whatever your personal maker has sort of suggested you will get as a door prize for colouring inside the lines while you are still made of blood and bone.
I figured it was about everyone else.
But maybe it’s about me.
Because it makes me really, really angry when people talk like that. But the truth is, people are just going to continue to be freaked out, and not admit that they are freaked out, and make great sweeping statements about someone else’s life.
So, I am going to try to not become spitting mad the next time someone says that stupid crap. I’ll try to remember that they are just freaked out and afraid and not really trying to act like some sort of palliative pronouncing smarty-pants who deserves a kick in the ass.
I don’t know if I can do it, but I am going to try.
And, if that doesn’t work, I do have an Ipod that does a fine job of blocking out idiotic background noise.
R.I.P. Roix
I’ve been thinking all sorts of blog-worthy thoughts lately and I surely do intend to sit down and hammer them out. Real soon.
In the meantime, this is really interesting article about cancer and gender and the marketing of cancer and “thinking pink”.
Clearly I think you should read this article because I included it in my links and I am waving my arms around right here, telling you about it a second time.
I just read this really good article in the New York Times
When Thumbs Up Is No Comfort
By JAN HOFFMAN
Published: June 1, 2008
OVER the Memorial Day weekend, the actor Patrick Swayze, who is being treated for pancreatic cancer, made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy. Meanwhile, Senator Ted Kennedy, who had recently left Massachusetts General Hospital with a diagnosis of brain cancer, flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, “Fight, Ted, Fight!”
As public figures are stricken with harrowing illness, the images of them as upbeat — think of the former White House spokesman Tony Snow, Elizabeth Edwards, the actress Farrah Fawcett — accompanied by stirring martial language, have almost become routine.
“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.”
That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”
Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.
Adam Lichtenstein, a founder of Voices Against Brain Cancer, a fund-raising and support organization, sees no down side to Mr. Kennedy’s composure. “It gives everyone else with his diagnosis a glimmer of hope,” said Mr. Lichtenstein, whose ebullient brother, Gary, was 24 when he died from a glioblastoma. “Patients think, ‘He’s fighting it, why can’t I?’ ”
But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.
“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”
Certainly maintaining a game face is how many patients cap the eruption of terror and anxiety, in an effort to protect their loved ones and themselves. But not everyone is going to be brave, said Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said. “As a society we value the stoic but we don’t know what the stoicism hides.”
Although public figures promote enduring impressions of the stalwart, pumped-up spirit, he added, patients themselves often describe a more nuanced, evolving journey. When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, “Everything went dark, went blank,” he recalled. “I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, ‘How long do I have to live?’ ”
Faced with potentially harrowing repercussions from a biopsy, Mr. Kosinski, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.
He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”
That was 15 years ago. Mr. Kosinski, now 61, paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. “Some people in my group don’t want to hear the upbeat scenario,” he said. “The way they’re coping is completely the opposite because they feel they may not make it.”
It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative.
“If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”
In the last 15 years, as patients have become more outspoken, a mushrooming amount of cancer narratives has legitimized a soulful range of responses to illness. The Internet teems with patients’ voices: communities gather to weep and wisecrack on sites like the uppity ChemoChicks or MyCancer, a National Public Radio blog by Leroy Sievers, a former television news producer .
Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.
“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.
To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.
Richard Haimowitz, 62, a lawyer in Queens who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.
“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” Statistics to the contrary, Mr. Haimowitz has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, Mr. Haimowitz recalled, he did not fear death, even though he did not want to die. Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say yes, others no. They all have their critics.
“The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”
Certainly patients need psychic resolve to make difficult decisions, prepare for stark regimens and to push back against bleak prognoses. The evolutionary biologist at Harvard, Stephen Jay Gould, whose doctors told him that eight months was the median survival rate of patients with his diagnosis, abdominal mesothelioma, wrote: “Attitude clearly matters in fighting cancer.” In his 1985 essay, “The Median Isn’t the Message,” he described how he then closely studied those grim statistics to optimize his chances. He died from another form of cancer 20 years after the initial diagnosis.
Uneasy well-wishers, steeped in near-superstitious belief about positive mental attitude, can exacerbate anxiety. On Cancerblog.com and ChemoChick’s “Excuse Me?” sites, lists of tone-deaf remarks include, “If anyone can beat it, it’s you,” “You gotta think positively” and “Just look at Lance,” a reference to Lance Armstrong, the champion cyclist and a cancer survivor.
Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.
His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”
HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.
But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”
This article probably won’t be much of a surprise to anyone who has lived it, but…
Thursday, 29 May 2008 01:13 UK
Cancer survivors ‘left in limbo’
Many long-term survivors of cancer are not getting the help they need to cope with the after-effects of the disease, experts warn.
More than 60% of adults with cancer can expect to live five years or more, according to an article in the European Journal of Cancer.
Yet they are left “in limbo” to deal with ongoing symptoms from their disease or harsh cancer treatments.
The government said it was working to improve services for cancer survivors.
Professor Marie Fallon, an expert in palliative medicine at the University of Edinburgh, said the number of people living with the effects of cancer was rising as more and more people were surviving the condition.
There is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms
Professor Marie Fallon
She added that cancer survivors would suffer ongoing symptoms but often be confused about whether they were treatment-related or whether they were a sign the cancer had come back.
“Traditionally, palliative care has been aimed at one end of the spectrum where it is used to help patients near the end of their lives,” she said.
“However, there is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms.”
“These patients exist in a limbo.
“They fall between two stools – they have finished being treated by oncologists, but are not receiving the care and support from palliative care teams that patients at the end of life receive.”
She added the ongoing problems, which included pain, swelling and depression could result in poor quality of life.
Better provision
Better integration was needed between oncology services and palliative care to prevent people falling through the gap, she said.
And there needs to be a clear agreement of where patients can access help and who should be responsible, she added.
Professor Alexander Eggermont, president of the European Cancer Organisation, said: “To be cured from cancer, but living with symptoms that are related to often complex multi-disciplinary treatments involving surgery, radiation therapy and chemotherapy is already difficult enough.
“To reintegrate into society, resuming work full or part-time adds to the complexities and socio-psychological pressure that an ever-increasing number of former-patients have to deal with.
“We better start tackling these issues now as they will only increase in number and magnitude.”
A Department of Health spokesperson said deaths from cancer in people under 75 fell by 17% between 1995 and 2006.
“The Cancer Reform Strategy published in December 2007, recognised that the services and support available to those living with and beyond cancer needs to be improved and announced the establishment of a new National Cancer Survivorship Initiative to deliver this.”
Today is that weird anniversary of the day I got told I had ovarian cancer. That seems like a blog-worthy bit of news, since this space is supposed to be about me and the old OVCA. And it is a big deal. Overwhelming, in fact.
Like, when I sit and think about it, there is a small tsunami that erupts around the memory of the things that happened four years ago.
And next year, the five year mark, is technically when they shower you with streamers and silly hats and cake, assuming the news stays on the good side of the ledger for the next 12 months. But me, they will keep following me for 7 years. So I don’t think I get to have that party next year, assuming all the ducks stay in their current rows.
I can’t really capture very much from the inside of my head about this issue, but a couple of things do come to mind.
Firstly, I guess most everyone can look back to four years ago and say, “whoa, things sure are different now.” The last four years, for me, have been a bit like being caught under a truck and dragged along gravel. It really has been a spectacularly awful chunk of my life. And I also know that, in terms of cancer crap, it could have, and technically should have, been *so* *much* *worse*.
I find that notion hard to balance out inside my head. Like, I am actually grateful for my own good fortune and feel a deep grief for the women I know who have died from ovarian cancer over the last couple of years. But sometimes I get all spun around, thinking I ought to be more Lance Armstrong-like.
That stuff is weird. Because when I was doing chemo, I believed that all I had to do was survive the chemo and get the good test results and everything would be good again. Apparently the powers that be didn’t get that memo.
But whatever. We trudge along. And it will get better. I do believe that.
And I am lucky that my body took the chemo and responded the way the doctors had hoped.
So, I got told I had cancer on the Friday before Mother’s Day, four years ago.
Mother’s Day seems to hold enormous significance in this whole OVCA experience.
When I first started blogging about this, I connected up with some other women with OVCA. Many of them were extremely sad that this disease had prevented them from bearing their own children. One of those people was a woman named Cancerbaby.
Cancerbaby was brilliant. Like, stunningly brilliant. I have no idea what she did for a living, but she had amazing writing skills and a scathing wit.
And she really really really wanted to have kids.
She did a round of chemo, things looked good, then things stopped looking good.
Eventually, she died on Mother’s Day, three years ago.
I remember walking to my truck after hearing the news and just crying about the whole thing.
It’s a bit freaky to me that in the links section of this page, more than a couple of the links lead to pages that aren’t there anymore.
I guess I should take down the link, but I don’t really want to.
My friend Marianna died from ovarian cancer last fall. Now I’d like to tell you how completely insane it is to have someone in your circle of friends end up with the same toxic disease as you, when the odds of that happening are, what… 1 in 70?
I guess I know more than 70 women.
Anyway, that sucked.
I know it doesn’t work this way, but I sort of felt like couldn’t I just go through this and then no one else I knew would have to? Or perhaps my experience would make everyone else hyper-vigilant to the symptoms. Except the symptoms for OVCA are so vague, how could anyone be better equipped because of what I went through?
Anyway, it would be Marianna’s birthday this weekend, this mother’s day weekend.
I am going to go work in her garden, with her partner and her friends. We’ll go have her birthday for her.
And then there is the mother’s day without a mother, for the first time, for me.
My mom was so sick for so long, I sort of thought I had gone through 98% of the letting go before she even died. And that may be somewhat true. But the world is a stranger place now that I don’t have a mother.
So, that’s the inside of my head. And I don’t mean to be a big downer.
I do hope that other people go out and have some really good time with the people they care about. I think that’s what you should do. If I am trying to say anything at all, it’s that everything changes and people in our lives aren’t always where we would like them to be so we should enjoy what we have with them.
So, do that.
Okay?
This news story is all over the internet today. This is the Globe and Mail’s version of the story. I gotta say, I am relieved that cancer researchers have finally decided to work *together* and share their research results so maybe we could make some headway with this nasty business.
Here’s how the Globe said it:
Ten countries co-ordinate cancer fight
CAROLYN ABRAHAM
Globe and Mail Update
April 29, 2008 at 12:14 PM EDT
Research groups from 10 countries are announcing today an unprecedented global effort to combat cancer, one of the world’s leading killers.
The collaborative project, dubbed the International Cancer Genome Consortium, will hunt the genetic mutations that drive 50 different types of cancer – from breast to bone. The consortium, in which Canada will play a lead role, plans to share results rapidly, widely and freely so scientists can quickly develop new diagnostic tests and treatments to counter them.
Each member country plans to spend roughly $20-million (U.S.) tackling at least one subtype of the disease, collecting specimen samples from 500 patients, and studying the genetic glitches they find in their cancerous cells. With 50 cancers to be studied, not all of them have been assigned a country yet.
But China, for example, intends to study liver cancer, since the country has particularly high rates of that disease. Japan will take on gastric cancer. India has an interest in oral cancers, France in sarcomas – cancers of the bone and connective tissue. Several countries will focus on breast cancers, including Britain and the United States, where research groups are also interested in brain and colon cancers.
Internet Links
* International Cancer Genome Consortium Popup
* ICGC Goals, structure, policies and guidelines (pdf) Popup
The Globe and Mail
Canada, which is to store, crunch and share all the data collected, will take on the pancreas.
”We picked a hard one,” said Dr. Tom Hudson, scientific director of the Ontario Institute for Cancer Research in Toronto, which will be the project’s home base as the ICGC Secretariat. ”There’s been research (into pancreatic cancer) but not much success. There’s just no survivor community.”
Dr. Hudson, who has helped to spearhead the consortium, noted pancreatic cancer is the 12th most common form of the disease, but one of the deadliest. More than 98 per cent of patients die within six months after diagnosis.
”In 2008, there will be 3,800 new cases and 3,700 deaths in Canada,” Dr. Hudson said. ”It’s almost always found too late.”
The consortium has come together in a whirlwind of meetings, conference calls and funding commitments during the past six months, driven by swift advances in computing technology that allow researchers to rapidly and cheaply read DNA. It is expected to amass 25,000 times more data than the international Human Genome Project, which produced the first draft sequence of human DNA in 2001.
DNA, the three-billion-chemical base-pair code that contains the operating instructions for human life, can be found in the nucleus of nearly every cell in the body. In cancer cells, however, that genetic code can be riddled with hundreds of mistakes, spawning cells that can multiply madly into deadly tumours.
”We know when you look at cancer cells, there can be thousands of mutations in that tumour cell…that were not inherited,” Dr. Hudson said. Specifically, he added, scientists are chasing the ”driver mutations” that allow a cancer to grow and spread and these are often different in different types of cancers.
Certain mutations have already proved worthwhile targets for treatment. Dr. Hudson pointed to the successful drug Gleevec as a prime example that has triggered remission in many patients. First approved to treat chronic myeloid leukemia, Gleevec works by blocking the abnormal version of a protein that a certain gene produces in the leukemia patients.
The treatment, which has since also been approved to treat a form of gastric cancer, represents a new class of drugs that selectively kill cancer cells without harming healthy ones. The lauded breast cancer drug Herceptin is another example of a therapy that selectively targets a specific molecule over-expressed in malignant cells.
There are few other examples, however, of such effective therapies, Dr. Hudson said, largely because it has been slow and expensive to find targets. He estimates that the consortium will run a 10-year effort, but ”we don’t have to wait 10 years (for a result), we will release it as we find it.”
The results will be made available to researchers worldwide and all those involved in the consortium have agreed ”not to file any patent applications or make other intellectual property claims on primary data from ICGC projects.”
The Ontario Institute for Cancer Research, with a five-year, provincially funded budget of $347-million, plans to spend $30-million on the project. At a press conference Tuesday morning, however, Ontario Premier Dalton McGuinty said the province will also contribute an additional $10-million to fund the OICR’s role as Secretariat.
Mr. McGuinty noted that Ontario, as a sub-national government, beat out the United States and Britain to lead the ICGC, and is essentially punching above its weight.
”Cancer is devastating to families and that’s why we’re doing all we can to help save lives,” Mr. McGuinty said. ”This investment puts Ontario at the forefront of international research that will save lives around the world.”
The money has so far allowed the institute to purchase 10 ultra-fast DNA-sequencing machines and lure top talent from the United States to take on the task. Among those recruited for ICGC job to Toronto, Dr. Hudson said, are Lincoln Stein, a pathologist turned bio-informatics ”guru” from Cold Spring Harbor, N.Y., and John McPherson, a Canadian scientist returning home from Baylor College of Medicine in Houston after 20 years in the United States.
Dr. Hudson said it is hoped the federally funded Genome Canada will contribute more money for the project, which would allow Canadian researchers to study other cancers, namely those of the brain and ovaries.
”We don’t want the pancreas to be the only one we do,” he said. Dr. Hudson is no stranger to science on a massive scale, having played an early role in the human genome project, and the international Hap Map, which was the first effort to chart genetic differences between four of the world’s major ethnic populations.
Duplicating efforts by studying the same cancer types in different countries is crucial, Dr. Hudson said, because ”tumours of the colon look different in Singapore than they do in Toronto.”
Researchers suspect environmental, dietary and genetic differences can impact the way cancers develop in different regions of the world.
More countries are expected to join the consortium in the coming months. The list so far includes: Australia, Canada, China, Europe, France, India, Japan, Singapore, the United Kingdom and the United States.
April is cancer month in the life of Spike so today I spent a lot of time exposing myself to necessary doses of radiation and talking to folks in lab coats and walking back and forth, from the clinic to my truck, from my truck to the clinic, lather, rinse, repeat.
I’ve mentioned before how I feel like I am a part of something when I am at the cancer agency.
And how there ain’t really anywhere else where I do feel a part of something anymore.
Strange, but true.
The one beautiful thing about the cancer agency is you never get tossed out because you have fallen from grace.
And much as it sort of sucks to feel like you belong somewhere like the cancer agency, at least it’s an important place to belong.
But in cancerland there is a fork in the road and, so far, I have stayed on the healthy side of that old fork.
And when I see folks at the cancer agency who are clearly in the middle of their treatment, I feel for them. I feel for them like I feel for no other carbon based life forms. They got sent down the other fork in the road.
So today I walked back and forth, back and forth, and I saw so many people who were clearly in the middle of treatment. People in bad wigs, people dragging their O2 around behind their wheelchairs. And that doesn’t even address the folks there who are not sporting the visible signs of distress from their treatment.
I spent about two hours, clomping back and forth, between my doctor’s office and the parkade and back again.
And as much as my life has sucked big time over the last four years, I realized I was one of the lucky ones.
Seriously.
For sure I would have liked to have sidestepped some of the heartache of the last couple of years. But I am not in a wheel chair, with an oxygen can and a bad prognosis.
And on that level, I am extremely lucky.
The whole thing went like this….
I went out with some friends from work. They went outside to smoke a cigarette. I stayed behind, having given up that vice a couple of years ago. I decided to read the local free rag while they smoked.
Savage Love is a column in that paper.
Savage Love is the column I read while my friends smoked.
Savage Love is the column that made me all weepy and misty-eyed in a far from strategic setting.
The story is here:
For those of you too weary to click the link, and also somewhat curious about copyright law and whether I might get tonked, here is the text.
At a Loss
April 3, 2008
By Dan Savage
I thought I could bang out a column today—a regular column, a column about my readers’ problems and their freaky fetishes and all those asshole politicians out there. You know, the usual.
The day my son was born, I managed to slip out of the maternity ward and write a column; I wrote one the day I was indicted by the state of Iowa for licking Gary Bauer’s doorknobs. (I was actually indicted for voter fraud—on a trumped-up charge, your honor—but Bauer’s knob needs all the attention it can get.) I’ve written columns on days that I was dumped and on the morning of 9/11. So I figured that I could bang out a column today.
I opened my laptop and started reading your letters. I love reading your letters—I do. But I couldn’t get into it. I just don’t have a column in me this week. I’m disappointed in myself. I write this column at Ann Landers’s desk, for crying out loud, and the old lady banged out a heartbreaking, truncated column when her marriage collapsed. If Landers could bang one out under that kind of emotional strain, then I could damn well bang one out, too. Just do it, right? Just fucking do it. But I just fucking can’t.
My mother died on Monday.
Perhaps a sex-advice column isn’t an appropriate place to eulogize an articulate, elegant woman, a practicing Catholic named for the patron saint of hopeless causes and, perhaps consequently, a Cubs fan. I mean, really. Eulogizing my mother back here with the escort ads? So let’s not think of this as a eulogy. Let’s think of it as a thank-you note, the kind of nicety that my mother appreciated.
Forgive the cliché: My mom gave me so much. She gave me life, of course, and some other stuff besides: her sense of humor, her bionic bullshit detectors, her colossal sweet tooth. She also gave me—she gave all four of her children (Bill, Ed, Dan, Laura)—her unconditional love. Long after I came out, she told me she always suspected that I might be gay; I was the quiet one, the boy who liked Broadway musicals and baking cakes and shared her passion for Strauss waltzes. When I asked my parents to take me to the national tour of A Chorus Line for my 13th birthday, that should have settled the matter. Your third son? Total fag, lady. But my parents were Catholic and religious and it somehow still came as a shock when I told them. My mother came around fast and she came out swinging—rainbow stickers on her car, a PFLAG membership card in her wallet, and an ultimatum delivered to the whole family: Anyone who had a problem with me had a problem with her.
But the real reason I feel compelled to thank her in this space, back here with the escort ads, is because I wouldn’t have this space if it weren’t for her.
My mother, as my brother Bill likes to say, made friends like Rockefeller made money and George W. Bush makes mistakes—and she was that friend you confided in and went to for advice. I was a mama’s boy—hello—and I spent a great deal of time in my mother’s kitchen listening to her tell her friends exactly what they needed to do. Sometimes gently, sometimes brusquely, always with a dose of humor. My mom liked to say that her son got paid to do something that she did for free—and isn’t that the way the world works? Women cook, men are chefs; women are housewives, men are butlers; she gave advice, I got paid to give advice. (And for a few years, she did too; my mother and I wrote a joint column for a couple of websites in the 1990s.)
So I want to thank my mom. I wouldn’t be writing this column today if it weren’t for her gifts and her ability to find the humor in even the most serious of subjects.
Even death, even her own.
After a long struggle, we had to go into my mother’s hospital room and tell her that nothing more could be done. She didn’t go into the hospital expecting to die and she was not ready to go. But she took the news with her characteristic grace. She said her farewells, asked us never to forget her (as if), and paused for a moment. Then Mom lifted an eyebrow, shrugged, and said…
“Shit.”
My mother wasn’t crude; I didn’t get my foul mouth from her. She used profanity sparingly and then only in italics and quotation marks. When she said “shit” on her deathbed, we understood the joke. What she meant was this: “Now, the kind of person who casually uses profanity might be inclined to say ‘shit’ at a moment like this. But I’m not the kind of person who casually uses profanity—and certainly not at a moment like this. But if I were the kind of person who casually used profanity, ‘shit’ might be the word I would use right now. If I were that kind of person. Which I’m not.”
Everyone gathered around her bed—my mother’s husband (my son has two fathers and so do I), my sister, my aunt—knew what Mom wanted: She wanted us to laugh. This woman, so full of life, who wanted so badly to live, having just been told she would not, she was trying to lift our spirits. (“Shit,” for the record, wasn’t her last word. Those were just for the family.)
Anyway, my mom is dead, and I am not in the mood, as she used to say. (“You are so,” one of us kids would usually respond. “You’re in a bad mood.”) So I’m going to take a week or two off, from the column and the podcast, hang out with the boyfriend and the kid, and burst into tears in coffee shops and grocery stores. I’ll run some greatest hits in this space while I’m away—I’ll find a column or two featuring Mom—and then I’ll be back, just as filthy minded as ever. In lieu of flowers, please send pictures of your boyfriends’ rear ends. (Lesbians may send flowers.) If you’re the donation-making type and you’re so inclined, my mother would be pleased to see some of your money flow to PFLAG (www.pflag.org) or the Pulmonary Fibrosis Foundation (www.pulmonaryfibrosis.org).
Oh, one last thing: I was supposed to take my mother to see the national tour of The Drowsy Chaperone in Chicago this Friday, April 11. It was her birthday present. I got us great seats: seventh row, on the aisle. But I won’t be able to use our tickets now. Not because it would be too depressing to go without my mother—not just because—but because, as rotten, stinking fate would have it, I’m going to be at my mother’s wake on Friday night.
But I’m practical, like Mom, and I’d hate to see perfectly good tickets to a national tour of a hit Broadway musical go to waste. And it occurs to me that there has to be a teenage boy out there—in Chicago or close enough—who likes musicals and has a mother who loves him for the little musical-theater queen that he is. If you know that boy or you are that boy or you were that boy a decade ago or if you’re that boy’s mother or grandmother, send me an e-mail and I’ll arrange to get these tickets to you.
Like I said, they’re great seats. I would go if I could. But I can’t.
Shit.
mail@savagelove.net
If Dan Savage wants to sue me for copyright violation, I guess he and I can duke it out at the orphanage.
April seems to be cancer month for me. I saw my gyno-oncologist yesterday and in a couple of weeks I will see the folks to care about my mutant-ness and keep an eye on where that old BRCA 1 mutation is going. While it may have happened before, on some level I feel overwhelmed by the huge cancer focus that is April of this year.
But it’s okay.
I mean, weird, but okay.
It’s a funny thing, but it seems like the death of my parents and a few other unhappy events have actually flipped me back to the beginning; back to trying to make sense of thinking I was all young and alive and…. ooops, you have cancer.
Like, life has been a shit sandwich for the last few years but to make sense of it, I have to begin at the beginning.
I was trying to explain to someone earlier today that going to the cancer agency for me is both weird and good. And maybe in ways you wouldn’t imagine.
But as strange as it might be to say, I think being in the cancer agency makes me a better person. When I am there, I feel pretty lucky. You walk in those doors and you can’t help but see people who are having a much harder time of things that I had or than I have.
There is nothing that stops me in my tracks like being in the cancer agency and seeing someone who is struggling.
And I confess, every single cell in my body starts to cheer for them, to urge them on. Cuz to me, we are very much on the same side.
Which leads to my second point.
When I finished chemo, probably the most important thing to me, aside from a list of things that were actually unattainable, was to grow my hair back.
As I have mentioned before, I could never have anticipated what a huge loss it was to lose my hair.
And thanks again to the friends who shaved their heads when I shaved mine. It meant the world.
So, when I passed a woman in a toque, it took me a second to connect the dots and then I felt this swell of emotion. And then I realized that she has no idea the depth of feeling she stirs in me.
Maybe it’s all too sappy to explain.
But as completely emotionally bankrupt as I am, I would do anything I could to help a cancer patient make it through their storm.
And, that said, the man in the lab coat showed up sans lab coat. Instead he was sporting a suit he bought when he was on sabbatical. We made jokes about his suit.
I like him a lot.
Which is good because he “tests” me in ways I am not prepared to discuss right here. But for me, right now, with this set of circumstances, he is the best doctor I could imagine having.
And for the folks keeping score at home, he says everything is fine and we will check back in a few months. And that’s a huge relief.
And in a couple of weeks, I will get my upper body tune-up, so fingers crossed for that.
But today, or really yesterday, I got reminded of how much worse it could all have been, past or present tense.
And I have been whining a lot lately, mostly because I think I have a lot to whine about. And I do.
But I remember how much worse it could be, and I feel for the folks who have to be there and who are there. And if I could do something to make any of it better, I would. Because at the end of the day, as much as any other group, those cancer peeps are my people.
I just found this post on the Best of Craigslist.
Sort of a primer for how to deal with people with cancer.
http://www.craigslist.org/about/best/pdx/465030621.html
Over the last few years I have been exploring the delights of the graphic novel and recently, at my beloved neighbourhood branch of the local library, I stumbled upon a graphic novel called “Cancer Vixen” by a woman named Marisa Acocella Marchetto.
Now, at first glance, me and Marissa couldn’t be more different.
She lives in the heart of the chaos and glamour of NYC. Suffice to say that I do not.
She is a cartoonist for The New Yorker. Not wishing to disappoint, but I am not this.
She is quite clearly heterosexual. Absolutely, without a doubt, I am not.
She describes herself as a “shoe crazy, lipstick-obsessed, wine-swilling, fashion fanatic, single-forever-about-to-get-married with a fabulous life finds… a lump”
Of the above, I can only kinda sorta claim one of those descriptors as coming close to me and my experience.
So, yeah, she is a living the high life, life full of glamour straight girl who finds a lump in her breast and then talks about what comes after.
And the thing with cancer is, if your identical twin had the same sort of cancer that you had, God forbid for both of you, you would each have wildly different experiences.
What is freaky for me about this graphic novel is the ways we had very similar experiences, in spite of our crazy differences.
She got engaged to be married and then got diagnosed with cancer. Me too.
She, and this is almost too much for my tiny brain to cope with, got diagnosed within two days of me. It’s actually possible we were diagnosed on the same day. And on some level, that makes sense, if you think about how many people in this big old crazy world have the unpleasant experience of being told they have cancer, well, for sure, some of us mouthy ones are bound to overlap with each other and then blab about it publicly. Still. To see in print that some gal got that soul crushing news on the same calendar day as you, well, it messes with your head.
She had breast cancer. I had ovarian cancer.
Hers was in the 1st stage. Mine was 3 C. Pretty different.
She was self employed with no health insurance. I was looked after by my government’s healthcare plan, my extended benefits and a bunch of people who cared about me.
Here’s a confession.
I am not sure anyone who has had cancer, no matter what its outcome, can accurately explain that experience to anyone who hasn’t stared at the ceiling of their room, wondering how it might work out and if they are gonna croak, right in that room, sometime far too soon.
I may be wrong. I would be happy to be wrong. My opinion is far from carved in stone. But I think that, really, at the end of the day, cancer is the thing that everyone fears and, when someone tells you that you have it, you become a wee bit different than regular people. I may be wrong about all that. But I don’t think so.
So, in spite of our many and significant differences, me and old Cancer Vixen had some freaky areas of overlap.
Or perhaps it would be more appropriate to say that she, more than anyone else I have read to date, captures some of the crazy, deep, chasms of emotion one explores when you parachute in to cancer land.
Marisa Acocella Marchetto does a great job of describing those moments where you feel crippled with guilt because your loved ones are going to panic, so you try to make it all be okay, cuz it feels awful to cause so much pain and stress to the people that you love but you can’t do jack to make it different and neither can they.
She talks about the terror and the grief you feel when you think, “Ah, right, I was supposed to get married but it looks like I will just my love on an amazing hellride instead. Buckle up, baby, the road gets bumpy ahead.”
The “wow, my life was actually bordering on being perfect and then this crazy shit happened to me.”
She does a great job of portraying the way some people just jump up and want to do whatever they can to help.
She does an equally great job of explaining how some seemingly well intentioned people can say all the wrong ‘blame the victim’ sort of things and all you can do is paste a smile across your sickly hairless head.
She talks about how hard it is to lose your hair.
Let me just say, for me, as a big bad dyke, I didn’t think it would be as bad as it was for other people, especially other women. Plus a handful of friends came by and had their heads shaved on the same day I did mine.
Thanks. My eternal thanks to that group who stepped up and tried to make that easier for me.
Because it was really awful. I thought being all queer and outside of the box in every sense, it would be okay. But it was such a huge issue for me. Being hairless was the equivalent of being the modern day eunuch and it almost killed me, from an ego point of view.
So when a shoe loving, fashion-diva straight girl talks about her struggles, I say, “Oh yeah, sister.”
She also, bless her highly fashionable boots for this, talks about chemo brain and memory loss.
I have googled ‘chemo brain’ and come up with squat.
But here’s the thing, a very candid moment….
Chemo ate my memory, there is no doubt about it in my mind.
But my mom died of Alzheimers’, so, when I don’t remember to hand in an assignment or that I should meet you at the movies and didn’t show up or that we already had this stupid conversation and you can’t believe I don’t remember that, I don’t always know which to chalk things up to.
But I do know, on a core level, that losing your memory sucks like few other things.
Anyway, you should read this book. I think you should.
If you can’t get it from your local library, it’s only 11 bucks from the dreaded and diabolical Amazon.ca
Rodger Dodger
over and out
Spike
spewing out 3 posts over 4 days… but don’t get used to it, folks, I’m just not that reliable.
** This post was generously sponsored by the words “freaky” and “crazy”.
Filed under the heading of
ANDRÉ PICARD
From Wednesday’s Globe and Mail
February 27, 2008 at 9:51 AM EST
Drugs commonly given to cancer patients because they are anemic after chemotherapy appear to increase their risk of dying, according to a new study.
The research, published in today’s edition of the Journal of the American Medical Association, suggests that the drugs, called erythropoiesis-stimulating agents (ESAs for short), may actually provide fuel to cancerous tumours.
“It’s troubling that 15 years after the drug came out, we finally came to this realization,” said Charles Bennett, an oncologist at Northwestern Memorial Hospital in Chicago and lead author of the study.
He said accepted practice is that using ESAs in moderation is safe but the new research challenges that view, “raising the concern that the drug may be stimulating cancer and shortening cancer patients’ survival.”
The new study is a meta-analysis, a compilation and analysis of previously published research. A total of 51 studies were included with 13,613 patients.
The analysis showed that patients who received ESAs to treat anemia had a 10-per-cent increased risk of death compared with cancer patients who did not receive the drugs.
Anemia is a common side effect of chemotherapy. Chemotherapy helps kill cancer cells, but it also eliminates good, healthy ones such as blood cells. It can decrease red blood cell levels, causing anemia and exhaustion.
Anemia can be treated with blood transfusions, but, in recent years, it has become common practice to treat the condition with one of two drugs, erythropoietin or darbepoetin, which stimulate production of red blood cells.
Last year, the U.S. Food and Drug Administration issued a public health warning about ESAs, particularly their use in cancer patients not undergoing chemotherapy.
Safety concerns are related to the fact that these drugs can cause life-threatening blood clots.
The new study confirms that concern, showing that patients receiving ESAs see their risk of blood clots in the legs or lungs jump by 57 per cent.
About 7.5 per cent of cancer patients treated with ESAs developed blood clots compared with 4.9 per cent who took placebos in the study. Dr. Bennett said that the increased rate of death does not appear to be due to blood clots, but rather by a return of cancer.
Another researcher involved in the study, Stephen Lai, an assistant professor at the University of Pittsburgh Medical Center, did laboratory work that showed cancer cells were stimulated when he exposed them to ESAs.
“We saw dramatic change,” he said. “Giving cancer patients EPO [a type of ESA] for their anemia may actually cause their tumours to progress.”
Dr. Bennett said he believes the findings should have an influence on clinical guidelines and oncologists should rethink their use in cancer patients.
“If I had cancer and needed a blood transfusion, I would be much more conservative about taking ESAs,” he said.
ESAs such as darbepoetin (brand name Aranesp) and erythropoietin (brand names Epogen and Procrit) are used to treat kidney disease as well as chemotherapy-related anemia.
According to the paper, ESAs generate sales of more than $6-billion (U.S.) annually in the United States.
This just in from the Scientific American
Breast cancer gene carriers need dual screening
By Anthony J. Brown, MD
NEW YORK (Reuters Health) – Among women with BRCA1 gene mutations, which are known to increase the risk of breast cancer, annual screening with both mammography and MRI is associated with better survival when compared with screening with either method alone, new research indicates.
The trade-offs, however, are a high rate of false-positive results, which lead to unnecessary biopsies.
The findings were based on data from 22 studies that included 8,139 women who carried the BRCA1 gene. In addition, the researchers developed a prediction model based on data from the Surveillance Epidemiology and End Results (SEER) Program (1975-1980) and the Breast Cancer Surveillance Consortium.
The results indicated that annual combined screening with mammography plus MRI increased the average life expectancy by 1.38 years compared with follow-up only without screening tests (clinical surveillance). The false-positive rate was 84.0 percent.
“For women who carry BRCA1 gene mutations, adding annual MRI to annual mammography has a clear benefit in terms of projected life expectancy and breast cancer mortality reduction,” lead author Dr. Janie M. Lee told Reuters Health. “Whether the trade-offs related to MRI screening are acceptable to women at increased risk of developing breast cancer is still being investigated.”
In the general population, the lifetime risk of breast cancer for women is 13 percent. In BRCA1 mutation carriers, by contrast, this risk can be as high as 80 percent. Strategies to reduce this high risk have included preventative mastectomy, removal of the ovaries (to lower levels of estrogen which can encourage breast cancer growth), preventive chemotherapy, and more frequent office visits, according to the report in the journal Radiology.
Younger women, especially those of childbearing age, are often reluctant to undergo preventative mastectomy, the investigators point out. Preventative chemotherapy might be a suitable choice, but unfortunately no studies to date have shown it to reduce breast cancer mortality. That leaves increased surveillance.
According to the report, mammography is not nearly as sensitive at detecting breast cancers in BRCA1 mutation carriers as it is in the general population. Previous research has shown that MRI can achieve higher sensitivity than mammography, but whether this translates into reduced breast cancer mortality is unclear.
Due to the long length of follow-up and the large number of patients required, the authors note that it is unlikely that any trial will ever investigate whether MRI screening can reduce breast cancer mortality. This prompted Lee, from Massachusetts General Hospital in Boston, and colleagues to conduct the current decision analysis.
The average life expectancy was 71.15 years, the report indicates, and with clinical surveillance alone, the average diameter of breast cancers at diagnosis was 2.6 centimeters. Using annual screening with mammography, MRI, or both, the average tumor diameter at diagnosis fell to 1.9, 1.3, and 1.1 centimeters, respectively.
Compared with clinical surveillance, all three imaging-based screening strategies increased life expectancy and reduced mortality from breast cancer. Again, the most pronounced benefit was with mammography plus MRI.
In addition to the high false-positive rate seen with mammography plus MRI screening, nearly one in three women underwent one or more biopsies for what turned out to be benign disease. The false-positive rates and negative biopsy results with the other screening strategies were also increased, but not as high as that seen with the combined approach.
More research is required to find the optimal sequence and frequency for screening tests for breast cancer, and to “minimize the potentially negative effects on women’s health-related quality of life when screening with increased intensity is pursued,” Lee noted.
She added that her team is “currently working to extend our model of breast cancer natural history and screening in BRCA1 gene mutation carriers to women who carry BRCA2 mutations, and women whose lifetime risk of breast cancer exceeds 20 percent — these women are defined by the American Cancer Society as being at ‘high-risk’ of developing breast cancer.”
SOURCE: Radiology, March 2008.
http://www.sciam.com/article.cfm?id=breast-cancer-gene-carrie
Hope for a reliable, early detection test
Phase III evaluations have begun on a blood test developed by
researchers out of the Yale School of Medicine. So far the test has
detected newly diagnosed ovarian cancer with 99.4 percent accuracy by
using six protein biomarkers. “We hope this test will become the
standard of care for women having routine examinations,” says lead
author Gil Mor, M.D., associate professor at the department of
Obstetrics, Gynecology and Reproductive Sciences at Yale.
The test requires further study and extended follow-up with more
patients, however the news represents an encouraging development in the
search for a reliable, early detection test for ovarian cancer. Results
from the phase II clinical trials were published in the February 15
issue of the journal Clinical Cancer Research.