Something Evil This Way Comes

April seems to be cancer month for me. I saw my gyno-oncologist yesterday and in a couple of weeks I will see the folks to care about my mutant-ness and keep an eye on where that old BRCA 1 mutation is going. While it may have happened before, on some level I feel overwhelmed by the huge cancer focus that is April of this year.
But it’s okay.
I mean, weird, but okay.
It’s a funny thing, but it seems like the death of my parents and a few other unhappy events have actually flipped me back to the beginning; back to trying to make sense of thinking I was all young and alive and…. ooops, you have cancer.

Like, life has been a shit sandwich for the last few years but to make sense of it, I have to begin at the beginning.

I was trying to explain to someone earlier today that going to the cancer agency for me is both weird and good. And maybe in ways you wouldn’t imagine.
But as strange as it might be to say, I think being in the cancer agency makes me a better person. When I am there, I feel pretty lucky. You walk in those doors and you can’t help but see people who are having a much harder time of things that I had or than I have.
There is nothing that stops me in my tracks like being in the cancer agency and seeing someone who is struggling.
And I confess, every single cell in my body starts to cheer for them, to urge them on. Cuz to me, we are very much on the same side.
Which leads to my second point.
When I finished chemo, probably the most important thing to me, aside from a list of things that were actually unattainable, was to grow my hair back.
As I have mentioned before, I could never have anticipated what a huge loss it was to lose my hair.
And thanks again to the friends who shaved their heads when I shaved mine. It meant the world.

So, when I passed a woman in a toque, it took me a second to connect the dots and then I felt this swell of emotion. And then I realized that she has no idea the depth of feeling she stirs in me.
Maybe it’s all too sappy to explain.
But as completely emotionally bankrupt as I am, I would do anything I could to help a cancer patient make it through their storm.

And, that said, the man in the lab coat showed up sans lab coat. Instead he was sporting a suit he bought when he was on sabbatical. We made jokes about his suit.
I like him a lot.
Which is good because he “tests” me in ways I am not prepared to discuss right here. But for me, right now, with this set of circumstances, he is the best doctor I could imagine having.
And for the folks keeping score at home, he says everything is fine and we will check back in a few months. And that’s a huge relief.
And in a couple of weeks, I will get my upper body tune-up, so fingers crossed for that.

But today, or really yesterday, I got reminded of how much worse it could all have been, past or present tense.
And I have been whining a lot lately, mostly because I think I have a lot to whine about. And I do.
But I remember how much worse it could be, and I feel for the folks who have to be there and who are there. And if I could do something to make any of it better, I would. Because at the end of the day, as much as any other group, those cancer peeps are my people.

Over the last few years I have been exploring the delights of the graphic novel and recently, at my beloved neighbourhood branch of the local library, I stumbled upon a graphic novel called “Cancer Vixen” by a woman named Marisa Acocella Marchetto.

Now, at first glance, me and Marissa couldn’t be more different.
She lives in the heart of the chaos and glamour of NYC. Suffice to say that I do not.
She is a cartoonist for The New Yorker. Not wishing to disappoint, but I am not this.
She is quite clearly heterosexual. Absolutely, without a doubt, I am not.
She describes herself as a “shoe crazy, lipstick-obsessed, wine-swilling, fashion fanatic, single-forever-about-to-get-married with a fabulous life finds… a lump”
Of the above, I can only kinda sorta claim one of those descriptors as coming close to me and my experience.
So, yeah, she is a living the high life, life full of glamour straight girl who finds a lump in her breast and then talks about what comes after.

And the thing with cancer is, if your identical twin had the same sort of cancer that you had, God forbid for both of you, you would each have wildly different experiences.
What is freaky for me about this graphic novel is the ways we had very similar experiences, in spite of our crazy differences.
She got engaged to be married and then got diagnosed with cancer. Me too.
She, and this is almost too much for my tiny brain to cope with, got diagnosed within two days of me. It’s actually possible we were diagnosed on the same day. And on some level, that makes sense, if you think about how many people in this big old crazy world have the unpleasant experience of being told they have cancer, well, for sure, some of us mouthy ones are bound to overlap with each other and then blab about it publicly. Still. To see in print that some gal got that soul crushing news on the same calendar day as you, well, it messes with your head.
She had breast cancer. I had ovarian cancer.
Hers was in the 1st stage. Mine was 3 C. Pretty different.
She was self employed with no health insurance. I was looked after by my government’s healthcare plan, my extended benefits and a bunch of people who cared about me.

Here’s a confession.
I am not sure anyone who has had cancer, no matter what its outcome, can accurately explain that experience to anyone who hasn’t stared at the ceiling of their room, wondering how it might work out and if they are gonna croak, right in that room, sometime far too soon.

I may be wrong. I would be happy to be wrong. My opinion is far from carved in stone. But I think that, really, at the end of the day, cancer is the thing that everyone fears and, when someone tells you that you have it, you become a wee bit different than regular people. I may be wrong about all that. But I don’t think so.
So, in spite of our many and significant differences, me and old Cancer Vixen had some freaky areas of overlap.
Or perhaps it would be more appropriate to say that she, more than anyone else I have read to date, captures some of the crazy, deep, chasms of emotion one explores when you parachute in to cancer land.

Marisa Acocella Marchetto does a great job of describing those moments where you feel crippled with guilt because your loved ones are going to panic, so you try to make it all be okay, cuz it feels awful to cause so much pain and stress to the people that you love but you can’t do jack to make it different and neither can they.
She talks about the terror and the grief you feel when you think, “Ah, right, I was supposed to get married but it looks like I will just my love on an amazing hellride instead. Buckle up, baby, the road gets bumpy ahead.”
The “wow, my life was actually bordering on being perfect and then this crazy shit happened to me.”
She does a great job of portraying the way some people just jump up and want to do whatever they can to help.
She does an equally great job of explaining how some seemingly well intentioned people can say all the wrong ‘blame the victim’ sort of things and all you can do is paste a smile across your sickly hairless head.
She talks about how hard it is to lose your hair.
Let me just say, for me, as a big bad dyke, I didn’t think it would be as bad as it was for other people, especially other women. Plus a handful of friends came by and had their heads shaved on the same day I did mine.
Thanks. My eternal thanks to that group who stepped up and tried to make that easier for me.
Because it was really awful. I thought being all queer and outside of the box in every sense, it would be okay. But it was such a huge issue for me. Being hairless was the equivalent of being the modern day eunuch and it almost killed me, from an ego point of view.
So when a shoe loving, fashion-diva straight girl talks about her struggles, I say, “Oh yeah, sister.”
She also, bless her highly fashionable boots for this, talks about chemo brain and memory loss.
I have googled ‘chemo brain’ and come up with squat.
But here’s the thing, a very candid moment….
Chemo ate my memory, there is no doubt about it in my mind.
But my mom died of Alzheimers’, so, when I don’t remember to hand in an assignment or that I should meet you at the movies and didn’t show up or that we already had this stupid conversation and you can’t believe I don’t remember that, I don’t always know which to chalk things up to.
But I do know, on a core level, that losing your memory sucks like few other things.

Anyway, you should read this book. I think you should.
If you can’t get it from your local library, it’s only 11 bucks from the dreaded and diabolical Amazon.ca

Rodger Dodger
over and out

Spike
spewing out 3 posts over 4 days… but don’t get used to it, folks, I’m just not that reliable.

** This post was generously sponsored by the words “freaky” and “crazy”.

This just in from the Scientific American

Breast cancer gene carriers need dual screening

By Anthony J. Brown, MD

NEW YORK (Reuters Health) – Among women with BRCA1 gene mutations, which are known to increase the risk of breast cancer, annual screening with both mammography and MRI is associated with better survival when compared with screening with either method alone, new research indicates.

The trade-offs, however, are a high rate of false-positive results, which lead to unnecessary biopsies.

The findings were based on data from 22 studies that included 8,139 women who carried the BRCA1 gene. In addition, the researchers developed a prediction model based on data from the Surveillance Epidemiology and End Results (SEER) Program (1975-1980) and the Breast Cancer Surveillance Consortium.

The results indicated that annual combined screening with mammography plus MRI increased the average life expectancy by 1.38 years compared with follow-up only without screening tests (clinical surveillance). The false-positive rate was 84.0 percent.

“For women who carry BRCA1 gene mutations, adding annual MRI to annual mammography has a clear benefit in terms of projected life expectancy and breast cancer mortality reduction,” lead author Dr. Janie M. Lee told Reuters Health. “Whether the trade-offs related to MRI screening are acceptable to women at increased risk of developing breast cancer is still being investigated.”

In the general population, the lifetime risk of breast cancer for women is 13 percent. In BRCA1 mutation carriers, by contrast, this risk can be as high as 80 percent. Strategies to reduce this high risk have included preventative mastectomy, removal of the ovaries (to lower levels of estrogen which can encourage breast cancer growth), preventive chemotherapy, and more frequent office visits, according to the report in the journal Radiology.

Younger women, especially those of childbearing age, are often reluctant to undergo preventative mastectomy, the investigators point out. Preventative chemotherapy might be a suitable choice, but unfortunately no studies to date have shown it to reduce breast cancer mortality. That leaves increased surveillance.

According to the report, mammography is not nearly as sensitive at detecting breast cancers in BRCA1 mutation carriers as it is in the general population. Previous research has shown that MRI can achieve higher sensitivity than mammography, but whether this translates into reduced breast cancer mortality is unclear.

Due to the long length of follow-up and the large number of patients required, the authors note that it is unlikely that any trial will ever investigate whether MRI screening can reduce breast cancer mortality. This prompted Lee, from Massachusetts General Hospital in Boston, and colleagues to conduct the current decision analysis.

The average life expectancy was 71.15 years, the report indicates, and with clinical surveillance alone, the average diameter of breast cancers at diagnosis was 2.6 centimeters. Using annual screening with mammography, MRI, or both, the average tumor diameter at diagnosis fell to 1.9, 1.3, and 1.1 centimeters, respectively.

Compared with clinical surveillance, all three imaging-based screening strategies increased life expectancy and reduced mortality from breast cancer. Again, the most pronounced benefit was with mammography plus MRI.

In addition to the high false-positive rate seen with mammography plus MRI screening, nearly one in three women underwent one or more biopsies for what turned out to be benign disease. The false-positive rates and negative biopsy results with the other screening strategies were also increased, but not as high as that seen with the combined approach.

More research is required to find the optimal sequence and frequency for screening tests for breast cancer, and to “minimize the potentially negative effects on women’s health-related quality of life when screening with increased intensity is pursued,” Lee noted.

She added that her team is “currently working to extend our model of breast cancer natural history and screening in BRCA1 gene mutation carriers to women who carry BRCA2 mutations, and women whose lifetime risk of breast cancer exceeds 20 percent — these women are defined by the American Cancer Society as being at ‘high-risk’ of developing breast cancer.”

SOURCE: Radiology, March 2008.

http://www.sciam.com/article.cfm?id=breast-cancer-gene-carrie

I’m not really sure I can nail down a starting point for this post. But I just received an e-mail, reminding me that a year ago one of my OVCA buddies died. She was one of those online support comrades, another one I never met in real life and another one who died too soon. This online support thing is a bit strange to me, because the wellbeing of a bunch of people I have never met means so much to me. It’s a good thing, it just continues to surprise me with its intensity.

There has been a lot of death and grief in my life over the last couple of years and there is not much I can do about those circumstances except try to maintain some sort of point of view that allows me to squeeze out some smidgen of something positive. Often, I fail miserably at this goal. But one thing that is important to me is that we remember the people we have lost.
So, today, I thought I should do something to remember Heather MacAllister. This is a snippet from what I wrote a year ago.

“Heather was a Fat/Social Justice Activist and the founder of the Fat Bottom Revue, a burlesque troupe full of really hot fat grrrls.

The thing Heather wanted to say, that message she wanted to leave us with, is that we should love our bodies, just like they are and appreciate all they do for us, and that we should love each other.”

How about we all try that? How about that for a post-Valentine’s Day idea?

So, in anticipation of Valentine’s Day, how about we all do like she says and try to, you know, love one another or at least be more kind to each other. What could it hurt?

Since I am going on and on and on about my mom these days….

My mom was under 5 feet tall.
My mom never weighed more than 100 pounds in her life. Like, really. Even if she was on anabolic steroids, she wouldn’t have touched 100 pounds. (Though I shudder to think of her with a neck as big as my thigh.)

When I was a teenager, Randy Newman had an actual hit on the AM airwaves with his song “Short People”.
My mom thought that was one of the most brilliant pieces of satire, a well aimed poke at our inclination to persecute the “other”, all packaged up in hatred towards short people.
It baffled me at the time that she wasn’t offended, she thought it was a great social critique.

My mom rocked.

“They got little baby legs that stand so low
You got to pick them up just to say hello
Well I don’t want no short people
Don’t want no short people
Don’t want no short people
round here.”

It’s just on my mind tonight.