Dec 292005
 

I found this article through my Bloglines.com account and thought I would throw it up here for a few more people in the world to see.

And yes, I have been extremely bad about blogging lately.
I will do a real post sometime soon, maybe even before New Year’s.
You see, I have been crazy, crazy busy and I thought finishing the semester and taking a week off work would slow things down, but that wasn’t the case, at least so far.
More on all that soon.

In the meantime, fresh from the NY Times.

The url, for those wishing to backtrack is:

http://tinyurl.com/8bud5

Here is the text.

Discuss….

Slowly, Cancer Genes Tender Their Secrets
By GINA KOLATA

Jay Weinstein found out that he had chronic myelogenous leukemia in 1996, two weeks before his marriage.

He was a New York City firefighter, and he thought his health was great.

He learned that there was little hope for a cure. The one treatment that could save him was a bone marrow transplant, but that required a donor, and he did not have one. By 1999, his disease was nearing its final, fatal phase. He might have just weeks to live.

Then, Mr. Weinstein had a stroke of luck. He managed to become one of the last patients to enroll in a preliminary study at the Oregon Health & Science University, testing an experimental drug.

Mr. Weinstein is alive today and still taking the drug, now on the market as Gleevec. Its maker, Novartis, supplies it to him free because he participated in the clinical trial.

Dr. Brian Druker, a Howard Hughes investigator at the university’s Cancer Institute, who led the Gleevec study, sees Mr. Weinstein as a pioneer in a new frontier of science. His treatment was based not on blasting cancer cells with harsh chemotherapy or radiation but instead on using a sort of molecular razor to cut them out.

That, Dr. Druker and others say, is the first fruit of a new understanding of cancer as a genetic disease. But if cancer is a genetic disease, it is like no other in medicine.

With cancer, a person may inherit a predisposition that helps set the process off, but it can take decades – even a lifetime – to accumulate the additional mutations needed to establish a tumor. That is why, scientists say, cancer usually strikes older people and requires an element of bad luck.

“You have to get mutations in the wrong place at the wrong time,” Dr. Druker says.

Other genetic diseases may involve one or two genetic changes. In cancer, scores of genes are mutated or duplicated and huge chunks of genetic material are rearranged. With cancer cells, said Dr. William Hahn, an assistant professor of medicine at Harvard Medical School, “it looks like someone has thrown a bomb in the nucleus.”

In other genetic diseases, gene alterations disable cells. In cancer, genetic changes give cells a sort of superpower.

At first, as scientists grew to appreciate the complexity of cancer genetics, they despaired. “If there are 100 genetic abnormalities, that’s 100 things you need to fix to cure cancer,” said Dr. Todd Golub, the director of the Cancer Program at the Broad Institute of Harvard and M.I.T. in Cambridge, Mass., and an oncologist at the Dana-Farber Cancer Institute in Boston. “That’s a horrifying thought.”

Making matters more complicated, scientists discovered that the genetic changes in one patient’s tumor were different from those in another patient with the same type of cancer. That led to new questioning. Was every patient going to be a unique case? Would researchers need to discover new drugs for every single patient?

“People said, ‘It’s hopelessly intractable and too complicated a problem to ever figure out,’ ” Dr. Golub recalled.

But to their own amazement, scientists are now finding that untangling the genetics of cancer is not impossible. In fact, they say, what looked like an impenetrable shield protecting cancer cells turns out to be flimsy. And those seemingly impervious cancer cells, Dr. Golub said, “are very much poised to die.”

The story of genes and cancer, like most in science, involves many discoveries over many years. But in a sense, it has its roots in the 1980’s, with a bold decision by Dr. Bert Vogelstein of Johns Hopkins University to piece together the molecular pathways that lead to cancer.

It was a time when the problem looked utterly complicated. Scientists thought that cancer cells were so abnormal that they were, as Dr. Vogelstein put it, “a total black box.”

But Dr. Vogelstein had an idea: what if he started with colon cancer, which had some unusual features that made it more approachable?

Colon cancer progresses through recognizable phases. It changes from a tiny polyp, or adenoma – a benign overgrowth of cells on the wall of the colon – to a larger polyp, a pre-cancerous growth that, Dr. Vogelstein said, looks “mean,” and then to a cancer that pushes through the wall of the colon. The final stage is metastasis, when the cancer travels through the body.

“This series of changes is thought to occur in most cancers, but there aren’t many cancers where you can get specimens that represent all these stages,” Dr. Vogelstein said.

With colon cancer, pathologists could get tissue by removing polyps and adenomas in colonoscopies and taking cancerous tumors in surgery.

Colon cancer was even more appealing for such a study because there are families with strong inherited predispositions to develop the disease, indicating that they have cancer genes that may be discovered.

So Dr. Vogelstein and his colleagues set out to search for genes “any way we could,” Dr. Vogelstein said. Other labs found genes, too, and by the mid-1990’s, scientists had a rough outline of what was going on.

Although there were scores of mutations and widespread gene deletions and rearrangements, it turned out that the crucial changes that turned a colon cell cancerous involved just five pathways. There were dozens of ways of disabling those pathways, but they were merely multiple means to the same end.

People with inherited predispositions to colon cancer started out with a gene mutation that put their cells on one of those pathways. A few more random mutations and the cells could become cancerous.

The colon cancer story, Dr. Druker said, “is exactly the paradigm we need for every single cancer at every single stage.”

But scientists were stymied. Where should they go from there? How did what happens in colon cancer apply to other cancers? If they had to repeat the colon cancer story every time, discovering genetic alterations in each case, it would take decades to make any progress.

The turning point came only recently, with the advent of new technology. Using microarrays, or gene chips – small slivers of glass or nylon that can be coated with all known human genes – scientists can now discover every gene that is active in a cancer cell and learn what portions of the genes are amplified or deleted.

With another method, called RNA interference, investigators can turn off any gene and see what happens to a cell. And new methods of DNA sequencing make it feasible to start asking what changes have taken place in what gene.

The National Cancer Institute and the National Human Genome Research Institute recently announced a three-year pilot project to map genetic aberrations in cancer cells.

The project, Dr. Druker said, is “the first step to identifying all the Achilles’ heels in cancers.”

Solving the problem of cancer will not be trivial, Dr. Golub said. But, he added, “For the first time, we have the tools needed to attack the problem, and if we as a research community come together to work out the genetic basis of cancer, I think it will forever change how we think about the disease.”

Already, the principles are in place, scientists say. What is left are the specifics: the gene alterations that could be targets for drugs.

“We’re close to being able to put our arms around the whole cancer problem,” said Robert Weinberg, a biology professor at the Massachusetts Institute of Technology and a member of the Whitehead Institute. “We’ve completed the list of all cancer cells needed to create a malignancy,” Dr. Weinberg said. “And I wouldn’t have said that five years ago.”

The list includes roughly 10 pathways that cells use to become cancerous and that involve a variety of crucial genetic alterations. There are genetic changes that end up spurring cell growth and others that result in the jettisoning of genes that normally slow growth. There are changes that allow cells to keep dividing, immortalizing them, and ones that allow cells to live on when they are deranged; ordinarily, a deranged cell kills itself.

Still other changes let cancer cells recruit normal tissue to support and to nourish them. And with some changes, Dr. Weinberg said, cancer cells block the immune system from destroying them.

In metastasis, he added, when cancers spread, the cells activate genes that normally are used only in embryo development, when cells migrate, and in wound healing.

But so many genetic changes give rise to a question: how does a cell acquire them?

In any cell division, there is a one-in-a-million chance that a mutation will accidentally occur, Dr. Weinberg notes. The chance of two mutations is one in a million million and the chance of three is one in a million million million million.

This slow mutation rate results from the fact that healthy cells quickly repair damage to their DNA.

“DNA repair stands as the dike between us and the inundation of mutations,” Dr. Weinberg said.

But one of the first things a cell does when it starts down a road to cancer is to disable repair mechanisms. In fact, BRCA1 and 2, the gene mutations that predispose people to breast and ovarian cancer, as well as some other inherited cancer genes, disable these repair systems.

Once the mutations start, there is “a kind of snowball effect, like a chain reaction,” Dr. Vogelstein said.

With the first mutations, cells multiply, producing clusters of cells with genetic changes. As some randomly acquire additional mutations, they grow even more.

In the end, all those altered genes may end up being the downfall of cancer cells, researchers say.

“Cancer cells have many Achilles’ heels,” Dr. Golub says. “It may take a couple of dozen mutations to cause a cancer, all of which are required for the maintenance and survival of the cancer cell.”

Gleevec, researchers say, was the first test of this idea. The drug knocks out a gene product, abl kinase, that is overly abundant in chronic myelogenous leukemia. The first clinical trial, which began seven years ago, seemed like a long shot.

“The idea that this would lead to therapy was something you wrote in your grant application,” said Dr. Charles Sawyers, a Howard Hughes investigator at the University of California, Los Angeles. “It wasn’t anything you believed would happen soon.”

But the clinical trial of Gleevec, conducted at the Oregon Health & Science University, U.C.L.A. and M. D. Anderson Cancer Center in Houston, was a spectacular success. Patients’ cancer cells were beaten back to such an extent that the old tests to look for them in bone marrow were too insensitive, Dr. Sawyers said.

Gleevec is not perfect. It is expensive, costing about $25,000 a year. It is not a cure: some cancer cells remain lurking, quiescent and ready to spring if the drug is stopped, so patients must take it every day for the rest of their lives. And some patients are now developing resistance to Gleevec.

Still, Dr. Sawyers says, “Seven years later, most of our patients are still doing well.” Without Gleevec, he added, most would be dead.

As for the future of cancer therapy, Dr. Golub and others say that Gleevec offers a taste of the possible.

Dr. Golub said he expected that new drugs would strike the Achilles’ heels of particular cancers. The treatment will not depend on where the cancer started – breast, colon, lung – but rather which pathway is deranged.

“It’s starting to come into focus how one might target the problem,” Dr. Golub said. “Individual cancers are going to fall one by one by targeting the molecular abnormalities that underlie them.”

And some cancer therapies may have to be taken for a lifetime, turning cancer into a chronic disease.

“Seeing cancer become more like what has happened with AIDS would not be shocking,” Dr. Golub says. “Does that mean cure? Not necessarily. We may see patients treated until they die of something else.”

That is what Mr. Weinstein hopes will happen with him. The cancer is still there: new, exquisitely sensitive tests still find a few cells lurking in his bone marrow. And Gleevec has caused side effects. Mr. Weinstein says his fingers and toes sometimes freeze for a few seconds, and sometimes he gets diarrhea.

But, he said, “Certain things you put out of your mind because life is so good.”

 Posted by at 11:33 am
Dec 202005
 

Damn, time does slip away, eh?

I’m still around, running between work and school stuff, dealing with family and medical stuff and once in a while, trying to have some fun along the way.
But the pace over the last month or so has been more than brisk. I can’t believe how absurdly busy I am.
Whew.

And, much as I can feel kind of conflicted about “this season”, I have noticed over the last few days that one of the things that I like is how people who don’t know each other very well often take the time to wish each other well at this time of year. I like that part a lot.

So, as I throw on my clothes to dash off to work, and then run home and then run to school to buy my books for next semester, and possibly actually buy a present or two, and then the next thing and the thing after that, here’s a wee thought.

I hope you and yours enjoy the next couple of weeks in whatever way works for you.

 Posted by at 7:13 am
Nov 122005
 

A year ago today, I sat down in the big easy-chair for, what I hope very much is, my last chemo treatment.
Anniversaries and the passing of time matter to me, so I have been a bit extra-reflective (suitable for night riding!) lately.

Last year, in the months leading up to my last chemo appointment, all I wanted was for it to end, to get to treatment number 8 and to say adios to the lovely chemo nurses of the BCCA.
As I mentioned in an earlier post, at around treatment number 6, my oncologist was away at a conference so I ended up seeing a different oncologist and I mentioned my hopeful anticipation of the end of chemo.
She mentioned that lots of people suffer a sort of let-down after they finish their treatments, that they expect the world will embrace them with blue skies and gentle breezes and it turns out, there is a lot of adjusting and adapting to do.
I ‘pssshhhawww’ed her at the time. Much as it had been a miserable year, I still knew I had had a pretty good ride and that I had very little to complain about.
If you are going to go through a shitty situation like ovarian cancer, you might want to get as many good breaks as I did.
I had a really good gynecological/oncologist surgeon, which makes a massive difference in a person’s survival rate. Really, the statistics are shocking.
I had a super-fucking-girlfriend who stood beside me the whole way and held my hand and paid the bills and kept a roof over our heads for close to a year while I was sick or getting back from being sick. She listened to me be sad and scared and miserable, and I don’t know if she ever told anyone how sad and scared and miserable she was.
I had a great group of friends who circled the wagons and just helped me out so much.
It was an amazing process.
And to be completely honest, some folks faded to the background when things got tough, and other people, people I hadn’t connected with in years, just hopped back in my life and said, “How can I help?”.
So, I knew I had a pretty good version of a pretty crappy situation. I wouldn’t recommend a year going through treatments for ovarian cancer to anyone.
But for a crappy situation, I kind of had the best case scenario on many levels.

And all the same, last year sucked great green monkey dicks.
It most certainly did.
So, when the stand-in oncologist told me not to get too jacked up about what a swell and truly glamorous life I would have, apres-chemo, I thanked her for her advice, but thought her misguided.
Funny thing is, this year has sucked some pretty serious green monkey dicks in its own right, though not nearly as bad or as dramatic as last year.

But my point is, Novembrance day is, for me, now, about reflection.
I remember all too well my pudgy little bald and moon-faced self sitting there, plastered on Benadryl and Gravol, and Taxol and Carboplatin.
I remember what it’s like to feel my veins go in to spasm.
I remember what it’s like to feel mediocre and know that you are only at the top of the downward spiral and to know all too well how crappy you were about to feel, only add a little extra cuz it gets just a bit worse each time.
Chemo sucks.
I am so glad it is, fingers crossed, behind me.

But it does feel like a time for reflection.
I am truly grateful for all the love and support I have received from my friends and family and loved ones, and most of all, from Elaine.
I am grateful to all the strangers who made the time to help me out when I was so sick.
Thank you.
I am grateful to all the people who wandered back into my life and helped me, no matter how many years had gone by.
Thank you.
I am especially grateful to the women I have ‘met’ online, the other OVCA survivors, who get all the angles of it, and lessen the feeling of freaky, lonely isolation.
Thank you ( and a special thank you to Margaret. R.I.P.)

People talk a lot about how cancer changes you, and that’s true.
It changes a person on a whole lot of levels.
And lots of them are awful.
For me, I got at least one good change, because I got to see how spectacular people can be when things get kind of fucky on a major level.

And a year later, it’s been way harder than I ever expected it would be.
I suspect I have been a bit prickly, this last year.
And, you know, in almost all cases, I feel pretty okay with that.
Like, for those folks at work who think I am crabby, let me just say, fuck yeah I am.
Tell ya what… you get some guy in a lab coat to tell you that you have a 70% chance of cashing in your chips in the next 5 years and see how that impacts your sunny disposition, stupid hippie.

So, I have been crabby.
To Elaine, let me say, sorry about that.
To everyone else… sorry, but I am not really that sorry.
I think a lot of stuff came crashing up to the surface when I got better and I was crabby and irrational and tired of stupid bullshit.
So, I’ve been terse.

The bulk of the last year has been spent just trying to get my bearings.
When I was doing chemo, they told me it takes about a year till you feel normal again.

About two weeks ago, I got really tired of being crabby and unhappy all the time.
I started thinking that I, as much as anyone, should know that there are absolutely no guarantees that I will live to be 85 years old and playing in the Seniors Tour of the Dinah Shore Classic and chasing my caddie around in my Harley Davidson golf cart.
I think I had every right to feel those emotions, and I think I needed to feel them, and if they come back and knock on my door, I will feel them some more.
But mostly, after about a year, I am kind of bored with being angry all the time.
I shocked myself when I sat back and thought about how much time I had spent feeling crappy or feeling sorry for myself.
I kept thinking, “If I had a recurrence tomorrow, I would be so pissed off that I didn’t make the most of this time.”
So, now, that’s what I am trying to do.
It’s a hard process, in some ways, because I started the year full of Lance Armstrong optimism but I kind of had some terrible crappy thing fall down on me whenever I looked up and it took its toll.
I got like a hand-shy dog after a while, and, as these things go, things carried on being crappy.
So, I really thought a lot about how completely pissed off I would be if I got sick again and I had wasted this time being miserable about so many things.
And, I do want to say, that the last year and a half of my life have thrown me a few curveballs.
But I am tired of being unhappy and I wanted to do some things differently.

So, that’s what I am trying.
I am trying to assume I will have good days, and I wake up each day and ask myself what kind of day I want to have that day. Because I actually have a rather enormous amount of control over what kind of day I have. A lot more control than I have been exercising lately.

So, I am on it.
I am trying to shed that old skin that was so bruised and tattered and start fresh.

And, on that note, for those who are still reading along, we went to see the oncologist last week.
He said, “Your tumour marker is great. It’s at 8. Have a great Christmas, and see you in three months.”

I’ll take that news any old day.

 Posted by at 1:26 am
Oct 272005
 

Hey, thanks to all the people who have been so great about my dad and his illness.
It all sucks in a rather large way.
But I think maybe it sucks a tiny bit less than I thought it was sucking recently.
As it stands now, my dad is not (yet) in palliative care.
That’s the good news.

But he is still in the hospital. That’s 6 weeks and counting. And that is either good or bad, depending on how much of a long term view you are taking.
My dad has COPD and that pretty much bollocks up his breathing. He is wearing a mask pretty constantly these days.
The doctors and the physio’s at the hospital want to get him up and get him moving, but they can’t because his O2 levels drop so low when they try to get him to move around.
I don’t know what’s going to happen.
Hopefully I will be able to zip up there one of these days.

I don’t know what else to say.

Except things in the life of Spike are still fucked up in many ways. I feel like I spend way too much time dealing with hard crap in every angle of my life and I don’t get enough fun.
So, if you are in my life and you want to hang out and have fun, I am all over that.
But if you are in my life and you are gonna be a some kind of goof, then fuck ya.
I am so sick and tired of dealing with hard crap and pain and more crap.
I am digging in my heels and I will not stop until this little merry-go-round comes to a stop.
You wanna ride along, hop on, and be some kind of sweet and some kind of fun, and some kind of kind.

Giddy-up!

 Posted by at 6:42 pm
Oct 142005
 

hey, did I say my dad was getting a bit better?
Did I?

What a freakin’ fibber I am.
Damn…
Today they told me that they are gonna move him to palliative care.
Yeah.
Wow.
I can hardly stand to listen to myself, I have turned into such a whiny little wanker.

Yep, that’s how it is.

Well, actually, there are other nasty, ugly, tortured bits, but you might think I was just making crap up because it’s almost Hallowe’en. Dark, twisted painful tales of gut-wrenching sorrow and loneliness.

I’d just like a bit of a break soon.
I don’t think it’s too much to ask.
I’d like things to settle down with my girlfriend, I’d like things to settle down with my family, I would like school to be the only complication in my life.

Can I please have that?
Don’t I deserve that yet?

 Posted by at 10:19 pm
Oct 122005
 

For those of you following at home…

Lots of folks have been asking about my dad….
I dunno what’s going to happen there.
He will be in the hospital for at least another two weeks. That adds up to over a month if you figure it from when he got admitted a few weeks ago.
Rumours has it that the old man is getting marginally better. We know this because he is talking, and demonstrating our genetic disposition towards crankiness.
I don’t quite know what will happen next for my dad. If he gets out, he will probably end up in some sort of “rest home”.

His diagnosis is COPD, which means he has any combination of three lung diseases. I know I wouldn’t want to be his lungs, that’s for sure.
Anyway, short story of the whole thing is, I don’t know what is going on with my dad but I do really appreciate how sweet people have been about asking.
I imagine I will have to take a trip up there once I get done with this semester, assuming nothing too intense happens in the meantime.

About the BRCA 1 X-men mutation… well, apparently we are not having a Hallowe’en party at chez moi this year so I don’t know where I will take my Wolverine look.

I am waiting to hear from the folks at the Cancer Agency. I should have been put in touch with someone from the High Risk Clinic, but no word yet. But it’s okay, I got one of my favorite peeps at the Cancer Agency working on it. Hopefully I will hear soon.

School is intense. I am at the beginning of mid-terms and I know it’s all down hill from here.
I have the opportunity to go to San Francisco and see Metallica open for the Rolling Stones. I can’t tell you how much I want to do this, but, hell’s bells, it couldn’t happen at a less opportune time.
Stay tuned on that front.
Anyway, I am slogging my way through school, with the occasional fantasy about wild rock concerts and Cirque de Soliel shows.

And in case you were wondering, it is my humble opinion that my girlfriend and I are both (still) crazy.
I dunno aboot her, but I may or may not be available for coffee dates and head-patting sessions.
She never seems lacking for that sort of attention, but I could use some.
Also, if someone could create a few extra hours in each day, that would be great too.
Then I would have time for coffee and head-patting.

And last but not least…
I have been thinking a lot today about how my bosses and co-workers sent me to the Wickanninish Inn last year and how great that was.
It was really the vacation of a lifetime for me.
It was spectacular and I am so grateful for that. Even a year later, it still makes me happy.
If you want to see the pictures, go here:

http://www.spikeharris.com/gallery/Dream-Trip-to-the-Wikaninnish-Inn

and now, mes amis, I am going to bed.
I have a date with the librarian at the Cancer Agency tomorrow morning.

later, taters.

Spike

 Posted by at 11:28 pm
Sep 282005
 

slash

I’ve been kind of quiet, blog-wise, lately.

Things have been busy.
Things have been hard.
Things have been weird.

It’s hard to figure out where to start or what to include.
After all, this is the world-wide web.

So, my dad is in the hospital.
I went up to visit him cuz my girlfriend had buggered off and I was alone and I decided I might as well make the most of my free weekend, so I fired up the mighty 4×4 and drove and drove and drove.
The good news is that driving, alone, with the music cranked, really helped clear my head on some long smouldering issues on the subjects ‘what do I want?’ and ‘how can I get there from here?’.
After an extra long drive, due to not quite grasping the subtle nuance of several directional signs, I ended up on a not completely incorrect highway, but one that added about 2 hours to the drive.
But it was a beautiful drive and I am glad I made the wrong turn.

When I finally arrived at my dad’s place, I walked in the front door and found him on the couch, unable to get up.
Seems the old man had a dose of the pneumonia.
He has been in the hospital for about 10 days now, and frankly, I am not sure what his future holds.
I think he is awfully sad, and tired, and he misses my mom more than I ever would have expected, and I think he just feels like checking out.
Maybe I am wrong.
But he seemed very much like a man who was tying up loose ends when I spoke with him.

So, that’s hard enough.
And sad enough.
And I don’t even know how to begin to process that.
See, for all intents and purposes, I lost my mom when I was doing chemo.
I think my poor old dad couldn’t believe his Old Testament luck in 2004.
I need to make sense of the fact that I have lost my mom and I am going to lose my dad sometime in the not too distant future.

Like I said, that’s hard.

And I am in school.
I thought that would be great.
And it is.
But it takes an enormous amount of my time and energy.
It isn’t that it’s hard, because really, it’s not.
But it requires about 35 – 40 hours of my time and attention each week.
And I already work full-time.
I am really glad that I am in school and doing something different.
And if the way the gals in the bar were reacting to me being in library school is any indication of what my future holds, I am all for academia.
It’s just a bit of an adjustment.

And I am finding that I am trying really hard to make sense of what the hell I went through last year, but it is such an enormous amount of information and emotion and memory and ideas that I end up doing a Linda Blair and my head spins around and it’s a mess.
And I think I am messing up my relationship with too much Linda Blair.
Actually, I think (sshhh, this is a secret) we both have our Linda Blair moments and that makes it extra specially hard.
But here is the thing…
and I don’t mean this to be anything discouraging to anyone still in the trenches with cancer…
but here it is:
I think cancer eats a big hole in a person.
Leaves you looking like a freaking donut.
It takes something from you and from the people you love who go through it with you.
My girlfriend and I, we are the donut people.
Sometimes I think I can hear the wind whistling through the empty spots we have, where cancer wore through us.
And I don’t know what to do about that.
I love her more than anything and just want us both to get back on track.
I thought we would be cancer super-heroes.
Turns out, we are just regular, and that, just like my veins, we got some scar tissue to work through.
I wish it was different, but it isn’t.

And after all that sister-Mary-Sunshine routine, here is the kicker.
The thing you have been waiting for.

Last week, the nice gal who does the genetic testing at the cancer agency called me.
Asked me if I could come in and get my test results.
“Why sure,” I said.
Now, my girlfriend was super-busy doing 12 hour days for the movie industry, for The X-Men3, of all things, so I didn’t mention it.
And I was pretty solidly convinced that I was going to get good test results, so I wasn’t too concerned.

Oh.. let me back up some.
See, there is a bit of an overlap between breast cancer and ovarian cancer.
And there are two gene mutations called BRCA1 and BRCA2, that’s what they look for in the test.
Testing positive for the gene mutation means you have this wildly unpleasant chance of getting breast cancer and/or ovarian cancer.

Anyway, back to the funny story…

I didn’t tell my girlfriend because she was busy and because I didn’t think much about getting the test results and a whole lot of other reasons.
But I did happen to mention it to a friend in a phone conversation that morning.
She said that I couldn’t go by myself and she said she would come with me.
She’s a bit bossy, as are all the women I really enjoy, and she got on the phone and re-scheduled a job interview and then came to the meeting with me.

Have I mentioned how much I like the gal who does the genetic counselling?
She is just so nice.

So, the other E. and I went in to meet with the nice genetic counsellor and we sat down and chatted a bit, and she asked me if I was nervous about my test results and I said, no, I hadn’t had time to get nervous yet (bearing in mind that they did the blood work for this test about 10 months ago and since then, I have been waiting, and waiting, and waiting and waiting).
We all chatted for a bit and then she opened my file and said, “You test positive for the BRCA 1 gene mutation.”
I confess, I was gobsmacked.
It was *so* not the information I thought I was going to hear.
See, no one in my family has ever had cancer.
No one.
I am the freak, in that, and a few other, ways.
It makes no sense.
But there it is.

And what that means for me now is, I have a 50 – 85% chance of developing breast cancer in my lifetime.
I will go get mamograms and MRI’s, every 6 months.
I can have a mastectomy tomorrow, if I want.
Okay, not tomorrow… but pretty freakin’ quick, I reckon.

It’s weird.

Totally weird.

I don’t know what I will do.

It’s bizarre to think I have been walking around since birth with my cells mutating.
That’s weird in its own right.
And now, apparently I should make some major life decisions about stopping that.

Shheesh.

Gawd, I miss the lazy, hazy care-free days of 2003.

If you have a lazy, hazy cancer free life, even if you hate your job, or the collection agency calls you at dinner time, or your ex took all your valuable electronic equipment, or you didn’t get to start in the big softball game, or your girlfriend was necking with some mindless bimbo in the bar, hey
I am here to tell you.
That stuff doesn’t matter.

Carpe fucking diem, amigo.

I’d be so happy to have some little problems, some time soon.

Anyway, that’s where I am at today.

I don’t know what I am going to do.
I have already been thrown back into the system of all things cancerous, so I am waiting for my phone to ring, so I can make an appointment with my newest doctor, the one who specializes in the bosums.
And there are a whack more details I have to take care off, and doctors and peeps I have to meet up with.
And I am kind of pissed off about that.
I’ll tell you the truth on that one.

But yesterday, I was out walking, and I thought, I am not going to make any major life decisions till I finish this semester.
So, sometime in December, I’ll try to get to the bottom of all this.

Untl then, who’s your favorite mutant?

 Posted by at 10:48 pm
Sep 052005
 

I saw this article today and it’s been tonking on the inside walls of my brain ever since I saw it.

The article is taken from here

Full text below:

Woman to sue over breast blunder

A woman whose breast was removed after she was wrongly diagnosed with cancer has branded a 44,000 compensation offer ‘an insult’ and is to sue the health authority responsible.

Marjory Patterson, 52, had a healthy breast removed by surgeons after being told she needed a mastectomy.

But doctors at NHS Highland’s Raigmore Hospital in Inverness later admitted that they had been looking at another patient’s tissue sample and had made a mistake.

Mrs Patterson, of Alness in Ross-shire, was offered 44,000 compensation by the hospital, but said the amount was an “insult” and now plans to take her case to the Court of Session.

In a statement today, Dr Roger Gibbins, chief executive of NHS Highland, said: “This was a tragic case where a mistake was made.

“We apologised to Mrs Patterson as soon as the mistake came to light and have been trying to negotiate a settlement.

“We would like to negotiate a reasonable settlement figure with Mrs Patterson to avoid unnecessary court action. It is essential that we learn from this mistake.”

He added that changes had been put in place at Raigmore Hospital to reduce the risk of such a mistake happening again, including a review of the circumstances surrounding the case.

“As a result of this review a number of changes have taken place and procedures have been tightened up,” he said.

Reacting to NHS Highland’s statement this afternoon, Mrs Patterson’s husband, David, said: “I don’t think they will come up with what we are looking for – they are very, very biased and very cheeky and don’t seem to understand what we have been through.

“My wife is a nice person who didn’t deserve this. We are not talking about 44,000, we are talking 200,000 or 300,000, and I don’t think they will come up with that kind of money. It will go to court.”

Mrs Patterson said she was devastated by the mistake but wanted to highlight her plight.

She said: “No-one can understand what it’s like to be told you have a disease that could kill you.

“Then to be told it was a mistake is just disgusting. They can’t bring my breast back – I am disfigured for life.”

A couple of things come up for me when I read this.

Firstly, that would be awful, to have had some nasty surgery and lose some of your parts and then find out that they made a mistake.
Ouch!
Big big bummer.

I mean, the hospital screwed up royally and that is dreadful.

But the thing I find odd is how many women experience the exact opposite of this problem.
That they know there is something fishy with their bodies, but no one will do anything for them or take them seriously.
Not that that relates back to ovarian cancer diagnosis and treatment, not one bit.

I was talking with my GP the other day and she said she had a patient who had a long history of breast cancer and she wanted her breasts removed. Didn’t want to deal with the possible consequences, given her history.
She met with all kinds of surgeons, who all looked at her file and looked at her situation and they all refused to operate.
Then she finally found a surgeon who would operate and…
you know how this story ends, don’t you?
Well, gee-whiz, look at that!
She actually had breast cancer and it was small and not yet showing up in the testing process.
So,that’s sort of the opposite of what the woman in England had to deal with.

But here’s what stuck in my craw.
I understand that reporters mangle quotes and whole stories all the time, but I confess, I wanted to hop on a plane and go tonk Ms. Lawsuit in the head for saying:

“She said: “No-one can understand what it’s like to be told you have a disease that could kill you.”

Really, Mrs. Patterson?
Really?

Well, here’s what I say.
Fuck you, Mrs. Patterson.
Fuck you twice.

No one can understand?
You get big whining wanker.
Careful, or you may end up with a case of terminal uniqueness.
I hear it’s not as rare as you might think.

And now the poor dear is “disfigured for life”.
Wow.
What about me?
Am I now ‘disfigured for life’ cuz my abdomen will no longer have the look they so crave at Sports Illustrated for their famous swim suit issue?
Cuz honestly, I feel a little banged around, but I don’t feel ‘disfigured for life’.

Oh, and again…
Mrs. Patterson…
fuck off.

(fuck…grumble… fuck)

 Posted by at 8:43 pm
Sep 022005
 

Lately, I’ve been thinking a lot about my cancer buddy and Tour de France champ, Lance Armstrong.

Maybe it’s because of all the wise things that Cancer, Baby had to say about the man in the yellow jersey.

And partly because everywhere I go, I see someone wearing some wrist band, of some colour, with which they hope to communicate some message.

I am still working through what I think about the jelly bracelet business.
And it certainly does seem to have mushroomed into a huge business overnight.
Imagine being the king of jelly bracelet production.
Why, I imagine the King of Jelly Bracelets is now sending his kids to private school, don’t you?

I have a yellow bracelet.
And I wore it pretty religiously, especially right after I got it.
And then a couple of things happened.
The first thing that happened was I noticed that other people seemed to wear theirs sometimes, and sometimes not.
See, for them, it was just another bit of jewellry(??), albeit with a social message attached.
Then I started to think that maybe other people can take their bracelets off because they just can.
They can take a day off from cancer.
Leave that yellow jelly bracelet next to the sink and wear something tasteful in silver instead.
And that just made me crabby.
And then I realized I had no idea what the silly little bracelets mean to anyone else.
Have I mentioned I have been mucho mental lately?
Mucho.
Si.

Then I had another problem.
Okay, maybe it is a problem that comes from having grown up queer and lived a life with a billion secret identifiers that hover beneath the radar of the common man.
See, I put on my little yeller bracelet and I felt like I would now be able to find my people.
My cancer people.
I mean, that in itself is kinda strange.
But I do have my cancer people now, and I am glad of that.
But I thought that the little yellow jelly bracelet was going to kick down the doors of the invisibility of cancer survivors and that we would…
I dunno what happens after we all meet up and identify each other.
I guess I just got stuck at that yummy Hallmark moment where we all hug and put all our previous differences behind us.
Anyway… I thought it would be great.
It would be just like so many of the secret signals we homos have been using for years and years, so I thought I would take to it like a duck to water.
I’d be a natural after all these years of living with the secret signals.
And then I would be out and I would see someone else with a tell-tale yellow bracelet and I would think, “Oh ho!!, a yellow bracelet!!”
And I would find them in the most unlikely places, on the most unlikely people.
Then I became really confused.
See, part of me thinks there are billions of people who are affected by cancer and many of them wear the snappy yellow bracelet.
People who had cancer and all their loved ones and supporters, all sporting the yellow bracelet.
Cool.
And then I realized, as I saw the wee bracelets everywhere while the Tour de Lance was happening, that I think some folks wear them just because they think Lance Armstrong is super-cool.
Because, you know, nothing says “I think Lance is the man!” more than the stylish yellow bracelet.
And then I was completely confused and didn’t know if I should wear one or not.
And I think if you are totally in to bicycling and not that into cancer, maybe it’s weird to wear a yellow bracelet.
Not that I am the fashion police or anything… but really.
Just put on a Nike shirt if you just like the athletic angle of the story.

I am still piecing it all together, and I have gone back to wearing my bracelet, but I now give myself some freedom to take it off if the whim strikes.

And about Lance Armstrong and all those charges of performance enhancing drugs…
Here is what I think.
I don’t give a red rat’s ass.
Well, I guess that’s not completely true. I hope he didn’t.
But even if he did, so what?
Lance Armstrong represents hope for so many people.
I don’t care if he took performance enhancing drugs.
I can tell you, I couldn’t win the Tour de France with a barge full of performance enhancing drugs and I am willing to bet, neither could you.
I think Lance Armstrong is a symbol for us that life can go on after cancer, and that it can be a magnificent thing, full of accomplishment and challenges and thrills and joy.
Because when you know what it’s like to lay on your ass for months, and you see how he bounced back from that and did so much, that is a huge help.
I don’t care how he did it.
For me, it’s about the sense of hope he provides.

The other really huge thing about Lance Armstrong is, he has this life where he has gone back to doing the thing that he loves and he also stays devoted to giving something back to people with cancer.
I am still trying to figure out exactly what shape that will take in my life and how I will balance the drive to get things back to normal with the really deep need to give something back to the other people who are going through this.
To me, Lance Armstrong is about hope.
And about helping the people that come after you. Trying to make it just a little bit easier for them. Because it’s one of the few things we can do.

And finally, I just want to say, it’s time to knock it off with all the other jelly wristbands.
I mean, when they were for specific types of cancer, I was okay. A bit overwhelmed by the whole rainbow of bracelets but mostly okay.
But now, they are out there representing various political issues and even some bands are using them to advertise.
That’s too much, folks.
Knock it off.

 Posted by at 7:04 pm
Aug 222005
 

OVCA in the news…

(not that this reminds me of how pissed off I am that the locum who was replacing my GP wouldn’t do a full physical when I complained of some pelvic weirdness. Poor little gender-confused fella, didn’t want me dropping my drawers, I reckon. Not that I mind, in retrospect. Poor fella.)

This story, scooped from here

Diagnosing Ovarian Cancer Earlier

(Ivanhoe Newswire) — It may be possible to detect ovarian cancer sooner than once thought. A new study finds many women with the disease have symptoms at least four months before they are diagnosed.

Researchers from the University of California Davis School of Medicine in Sacramento found women with ovarian cancer were at least twice as likely to see a physician for abdominal swelling or pelvic pain as early as 12 months before they were diagnosed. Nine months before diagnosis, the women were more likely to complain of abdominal pain. However, only about one-fourth of the women with these symptoms were tested for ovarian cancer in a timely manner.

The study authors conclude, “Our findings suggest that ovarian cancer could be diagnosed earlier in some patients whose diagnosis is delayed by at least four months because physicians order abdominal imaging or perform gastrointestinal procedures before they order a test more likely to diagnose ovarian cancer, such as pelvic imaging and/or CA125.”

Ovarian cancer is a fast-growing tumor, progressing from the early stage to advanced stage of the disease in as little as a year. It is usually diagnosed in the late stages when prognosis is poor. This study adds to the increasing evidence that patients may have symptoms many months before ovarian cancer is diagnosed and before it is advanced.

 Posted by at 9:14 pm
Aug 202005
 

okay, in this post, I will demonstrate for any and all of my readers that I am, in fact, a bit of a sloe learner.
slough.
sloww.
slow.

See, I have to tell you that I am now at the point where I find myself kind of wrestling some element of disbelief, some lingering doubt, some feeling that maybe I just had this terrible dream for a big chunk of last year and look at me now, all rested and refreshed and handsomely hirsute.
Sometimes, and always at the oddest times, I find myself stopped dead in my tracks while I try to make sense of the sentence, “Holy crap! I had/have cancer.”
See, I am so not good with all this that I don’t even know what tense to use for that sentence.

You see, I have had a pretty solid political understanding of AIDS since my friends started dying in the eighties.
And I know a bunch about the horrors of Hep C, because so many people I know have it and have to deal with all the crap that comes with it.
I have spent some time in the ringside seats watching those I love battle some big nasties.
And I have certainly had friends and loved ones deal with cancer, don’t get me wrong.
I just never, ever though I would be someone who dealt with cancer.
When it came to my time to step into the ring, I never saw myself, in the black silk trunks, going up against cancer.
Yes, even though I smoked for all those years.
Never mind that.
I just never saw myself that way.
So imagine how odd it was for me to get a type of cancer that, according to Dr. On-call-ogist, isn’t effected one way or the other by smoking.

I complain a lot lately about how I feel like I can’t keep up and how I am still trying to rebuild my life and I wish people would understand that.
Here’s my dirty confession.
I am not so good with remembering that detail myself.
I really want my old life back.
And if I can’t have most of that old life back, I’d like to fast track out of this time of reconstruction and re-figuring everything out again.

I would like to know how one mentions the events of the year 2004 without bringing any conversation to an awkward and grinding halt and creating a situation where I get treated, errr, differently.

I would like to have enough time in my life to make sense of last year, repair the carnage that exists in many little pockets of my life from last year, and think about my future and start getting on with it.

I would like to have enough time to have a thorough and comprehensive break-down about all the shit that happened to me and mine in 2004.
2004, really not my favorite year.
Not by a long shot.

I would like to just feel solid again.
And I would like to someway, somehow, make it up to my girlfriend.
I don’t even know where to begin.

That’s what I would like.

I guess the first step in accomplishing all that is to realize the totality of what I went through.
Sometimes I feel like I can only peek at the events of last year for a few moments at a time, otherwise it’s just too freaky and overwhelming.
So, every so often, I pry the lid off my box of terrors and watch my demons spin around the room and I wrestle them and sometimes I win.
There are a lot of demons in that box.

I think this is going to take a while.

 Posted by at 8:49 pm
Aug 152005
 

It’s true, I went to see Dr. On-call-ogist last week and he blessed me and sent me forth to sin again.
I didn’t mention it here yet because I have been trying to figure my emotional reaction to the whole thing.
Because it’s all kind of weird.
See, I am happy, happy, happy that my test results are good.
Trust me, I am not unappreciative of all that.

But it’s getting hard to talk about life in the the shadow of cancer treatment.
I don’t miss chemo and all its accompanying disgusting icky crappy bits, not one bit.
But I feel like I am wandering in fairly uncharted territory in the post-chemo battleground, and it’s hard because most people just assume I am better.
Hell, I certainly look better than I did a year ago.
And I do feel better than I did a year ago.
But I am still pretty wrecked.
I find myself weeping for no apparent reason.
And that’s a little hard to explain, especially when everyone figures you are all cured up and happy to rejoice in the wonder of every single fabulous day.
Sometimes I feel more alone now, in the whole making-sense-of-whatever-the-hell-that-was than I did when I did the chemo.
People basically expect me to be back in the saddle and ready to ride, like nothing had ever happened. And in as many ways as I can, I try to oblige.
But I am kind of less than perfect these days.
I know that may come as a shock.

It’s all kind of bizarre.

I didn’t mention my test results because I feel like this is becoming more and more of a solitary thing I am doing.
It’s hard to talk about the gravity of the situation and the long term prospects without sounding… melodramatic or something.
So I am talking less and less about the thrilling world of cancer and life with cancer and life after chemo and all that carcinogenic jazz.
I don’t want to whine about it.
It’s just how it is.

So, yeah, my test results were good.
And I am happy about that.
And I am worried, in a low, rumbling kind of way, about what my future holds.
And it seems like everyone has resumed their old lives and I am trying to make sense of all this.
I gotta say, those OVCA bloggers make all the difference in the world.
It’s very odd to draw such comfort from a group of women who I have pretty much never met, with the exception of the exceptional Louise.

So, that’s my sad story, amigos.

I try not to get too maudlin here, but I am going to post this because I think there isn’t enough info on how bizarre life after chemo can be.

 Posted by at 10:50 pm
Aug 132005
 

So we did the Trip of Fear to the Cancer Agency to get Spike’s quarterly test results. I thought I did well as we went into the building, because my teeth were barely chattering and I did not vomit on the floor. Spike was brave, but then, she’s just like that.

She passed with flying colours. No signs of cancer, happy bloodwork. Yes, yes. Go home, have a life. See you in three months.

And I look around at my life, and my love, and think about what a lucky grrl I am.

-Elaine

 Posted by at 5:40 pm
Aug 092005
 

Today is the 60th anniversary of the U.S. bombing of Nagasaki.
80,000 people died, 74,000 of them almost immediately.

Today,I heard an interview on the CBC with one of the pilots.
They asked him if he felt any grief, in retrospect.
He said, no.
He said that the Japanese had been really mean to the American troops.
He didn’t seem to think there was anything that was extra fucked up about killing thousands of civilians, including all the children that would have been killed.
He said he had gone back to Hiroshima and Nagasaki a few years after the war.

Apparently, Nagasaki was not the original target. Kokoru was, but the Americans couldn’t fly there because there was a typhoon.
Imagine that.

Having gone through 8 rounds of chemotherapy, I find it hard to understand how seemingly normal people could drop that bomb and kill and poison so many people.
See, I had cancer, and people hopped on board and helped me.
Because cancer is awful and people feel compelled to help.

But somehow, it’s okay to drop an atomic bomb on a bunch of unsuspecting civilians and have them die totally awful deaths.
It’s okay to kill those people with a ton of deadly poison (that will stay in the atmosphere and kill lots and lots and lots of people over the years) because, well, apparently because it was important to end the war.
(And besides, they weren’t that pink colour that we so admire in each other, so they must have brought it on themselves.
Or something.)
And hey, don’t get me wrong. I think bringing WW2 to an end would have been a pretty big priority.
But apparently, ol’ President Truman had a bit more on his mind than just “ending the war”.
Apparently it was important to get an unconditional surrender from the Japanese and send a message to the Soviets and the Japanese and the rest of the world that the Americans were the big old bad ass super-power of the world and they weren’t afraid to pull out the big guns to prove their point.

So, happy anniversary.
Let’s all pause to think about how far we have come.

 Posted by at 6:42 pm
Aug 052005
 

Yesterday, I got to meet Louise because she is here in my city.

We got together and it was lovely.
Louise is great. She is funny and smart and brilliant and lovely and smart and kind and sweet and lovely.
While I wouldn’t wish this disease on anyone, it’s awfully nice to sit and talk with someone who knows exactly what I mean when I complain about ovarian cancer and all its wild ride thrills and chills.

Chalk another one up for the benefits that come from cancer bloggers connecting up with each other.

I will say more about how spectacular Louise is soon, now I have a date to lift things and put them back down again, and then I must go swim in a lake.

But hooray for Louise.

 Posted by at 6:33 am