Something Evil This Way Comes

6 Responses to “It’s not that I am not grateful”

1. Jennysue Says:
   April 5th, 2006 at 11:35 am Hey Spike, YOu could have copied and pasted that post to a dialogue bubble outside of my head….(that is a funny image) because I have the exact same struggle with all the emotions that come along w/ cancer. It is hard to digest, and to explain. But you did a good job getting some of your thoughts out there. I am with you my friend, I am not sure how grateful I am either.
2. Nicole Says:
   April 6th, 2006 at 7:27 pm Hey Spike,

   Like Jennysue said…you really gave the thoughts in my head a voice tonight. I spend as much time telling myself I should be grateful, happy, thankful as I do feeling angry, frustrated and afraid. Unfortunately I also spend a lot of time feeling guilty as well because I feel so isolated from my friends. I haven’t felt the same level of support from all my friends and family in this and it makes me feel like maybe I shouldn’t be feeling anything at all about all this cancer stuff. Maybe I’m just over reacting. I know everyone means well but at the end of the day, most of my friends have sent me one maybe two emails, and of the family I’ve heard from (my father excepted who has been nothing short of amazing) it was basically one phone call before treatment started and then nothing.

   Am I horrible person for not wanting being the one that has to call their friends and family and ask for a little love? I feel like I’m just supposed to be grateful for the support I do receive – and I am – but I also feel sad and alone more often than not.

3. pat Says:
   April 7th, 2006 at 1:05 pm and the two of you are not alone….Spike, thanks for being able to put it into words….I’ve had many of the same thoughts in my head but have not yet shared them with anyone because I don’t think they will understand.
4. H in NC Says:
   April 7th, 2006 at 10:54 pm Hi…I stumbled upon your blog right after my OVCA dx on 2/1/06. I found it so refreshing being from the lesbian point of view. I have only had 2 of 6 tx and can already relate to many of your thoughts/feelings. My girlfriend is from Toronto, living here in NC, and is a Godsend! She has been so dear in all of this muck. Thank you for sharing. It really does help those of us in various stages of our journey. I wish you longevity with dancing w/ NED’s sister. :-)
   H in NC
5. Liz (suburban girl) Says:
   April 9th, 2006 at 6:44 am Spike,
   You are such a talented writer. You expressed the “just finished chemo heaven/hell” perfectly. I think it is a stage everyone on the daisy side passes through.
   I wanted to help people too, so I made a clumsy blog that no one seems able to find. Then I realized I didn’t want to be thinking about the “pushing up through the dirt” side so much and took a big hiatus from the internet.
   I am helping one other woman with ovaCA undergoing chemo and that seems to be enough right now.
   As for the genderbender treatment issue, I’m glad you feel a sense of entitlement and don’t let other people’s initial awkwardness get to you as much. Enjoy the daisy side! Ignore the statistics and maybe let the fighter in you to stand at ease for now.
6. Vicki Says:
   April 9th, 2006 at 2:59 pm Hey Spike,
   Welcome to geeklife – I’m so glad that you mentioned Buffy.
   It’s the one show that I can watch when I’m chemo sick… I know all the shows by heart, but I watch them because somehow I imagine that as Buffy and gang are kickin a** on a demon/monster that’s what I’m doing to the chemo cells and I love it.

The beginnings of some cheery news on the vaccine front….

Immune cells taken from healthy volunteers were five times as likely to recognise dead ovarian cancer cells that had been killed with bleach, compared with cells that had been killed by heat or acid.

http://www.newscientist.com/article.ns?hbxmail=nl&id=mg18925414.600

-Elaine

It was suggested to me that I actually, you know, post something and let people know what the deets are from the latest visit with the dude in the lab coat.
Bad Spike strikes again.

Okay, so how it went is like this.

End of January, went and had the blood draw.
Beginning of February, go see Dr. Labcoat.
Now, historically, that week between the blood draw and the visit with Dr. On-call-ogist has been brutal. The world seems to take on a real nutty flavour, which doesn’t subside until we skip, relieved and yet emotionally exhausted, down the hallway to the parkade, delighted again to have good test results.
This time, things weren’t so nutty. I am not sure if this is because everything has been so all-around generally nutty that I am now completely calloused and can’t tell when any new nuttiness has been added, or perhaps I reached my nuttiness quota and the added bits just fell off me with nowhere to stick, or maybe we are getting used to this drill, or well, really I have no idea.

But the day came and there we are, in my little examination room, me in my stunning blue gown that really brings out the crack of my ass, when the nurse from the clinical trial came in and we all had a loverly little jaw wag because she wasn’t there last time so there was much blah blah blah and catching up and all. And then she looked at me sternly and said, “Where is your blood work?”
And let me just say, that got my attention.
We assured her that there had been the required trip to the lab the week prior and that it must exist somewhere.
She left and came back with the results.
Soon, Dr. On-call-ogist came in and told me I am brilliant.
I like it a lot when he says this. What he means is that my test results are brilliant. He isn’t speaking about my Mensa potential, which is sorta sad, but really, I’d take good test results over a Mensa membership, any old day.
For those of you following along at home with your CA-125 score card, the results are at exactly the same place as 3 months ago, which is the lovely, friendly, sign of infinity, number 8.
That’s good enough for me.

Soon, I get to go have my first visit at the High Risk Clinic.
I am hoping they have a gift shop or something because I would like a t-shirt.
Anyway, I have to go speak to them because I am a mutant.
That ain’t happening till later in the month.
And I also get to go back and have exactly the same ultrasound at exactly the same place that I had my “welcome to the wild and action packed world of ovarian cancer’ ultrasound, about two years ago.
See, I think I have some sorta hernia or something because I get some pretty weird feelings in the spot where they sewed and stapled me back together. Maybe they left a scalpel in there or something. I dunno.
But it’s weird and it feels kind of wrong in a ‘do yerself an injury’ sort of way, not in a ‘oh, another honking big tumour is living in your gut’ kind of way.
Still, returning to the scene of the crime like that is a bit unnerving.
Plus doing the distended bladder routine that the ultrasound requires is a bit sick and twisted.
But it beats the alternative.

So, that’s me and this month’s health tidbits.

More as it happens.

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.”

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.

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?

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?

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.