Hi, this is Elaine posting.
The most recent server crash last week hosed the list entirely (and the backups went down the chute as well), so if you were once on the announce-only list for Spike saying she’s updated this blog, you gotta subscribe again. Geekily sorry.
http://spikeharris.com/mailman/listinfo/spikebroadcast_spikeharris.com
ps: I’ve moved from the old hosting company to an entirely different one.
-Elaine
Thankfully, it’s not your tax dollars at work. It’s your toothpaste dollars.
http://www.patientlinx.com/healthday/20060317/H531363.cfm
Hysterectomy Can Lower Sexual Desire
FRIDAY, March 17 (HealthDay News) — Hysterectomy involving ovary removal (oophorectomy) increases a woman’s likelihood of experiencing low sexual desire, and decreased pleasure and orgasm, researchers report.
The effect was stronger than that seen in women who underwent natural menopause, the researchers add.
“This extensive, well-conducted study shows that women who undergo hysterectomy with removal of both ovaries are more likely to have low sexual desire and also more likely to be distressed about this,” study author Dr. Lorraine Dennerstein, director of the Office for Gender and Health in the department of psychiatry at the University of Melbourne, Australia, said in a prepared statement.
The study appears in the March issue of the Journal of Sexual Medicine.
The study of 1,685 European women, aged 20 to 70, found that women who’d had a surgical menopause were much less likely than premenopausal women, or naturally menopausal women, to engage in sexual activity. They were also significantly more likely to be dissatisfied with their sex life and their partner relationship.
“There is marked variation in prevalence of this type of surgery (hysterectomy and oophorectomy) throughout the world. The USA has a higher prevalence than, for example, France. Doctors and patients need to be aware that there may be detrimental effects on sexual function as a result of the surgery. The findings suggest hormonal causation for the lowered sexual desire,” Dennerstein said.
The study was funded by Proctor and Gamble Pharmaceuticals.Hysterectomy Can Lower Sexual Desire
FRIDAY, March 17 (HealthDay News) — Hysterectomy involving ovary removal (oophorectomy) increases a woman’s likelihood of experiencing low sexual desire, and decreased pleasure and orgasm, researchers report.
The effect was stronger than that seen in women who underwent natural menopause, the researchers add.
“This extensive, well-conducted study shows that women who undergo hysterectomy with removal of both ovaries are more likely to have low sexual desire and also more likely to be distressed about this,” study author Dr. Lorraine Dennerstein, director of the Office for Gender and Health in the department of psychiatry at the University of Melbourne, Australia, said in a prepared statement.
The study appears in the March issue of the Journal of Sexual Medicine.
The study of 1,685 European women, aged 20 to 70, found that women who’d had a surgical menopause were much less likely than premenopausal women, or naturally menopausal women, to engage in sexual activity. They were also significantly more likely to be dissatisfied with their sex life and their partner relationship.
“There is marked variation in prevalence of this type of surgery (hysterectomy and oophorectomy) throughout the world. The USA has a higher prevalence than, for example, France. Doctors and patients need to be aware that there may be detrimental effects on sexual function as a result of the surgery. The findings suggest hormonal causation for the lowered sexual desire,” Dennerstein said.
The study was funded by Proctor and Gamble Pharmaceuticals.
I just popped by Cancerbaby’s site. There is a post up there from CBF (Cancerbaby’s friend), saying they are going to take the site down on July 15th. Thankfully, they are running a bit behind schedule, because it was still up a few minutes ago. But it is going to come down and she was a great writer, and if you haven’t read her blog, you should. She was an amazing writer, and I continue to miss her and her brilliant posts that cut through all the confusion and laid the painful details out in the light of day. And, she was funny. And biting, and did I say brilliant? Go read her blog. If you read it before, go read it again. You usually have to pay money to read something this well-crafted and stunning and witty and bitter and funny and smart as anything.
Y’all should also know that I had one of those 3 month check-in visits with my oncologist, well, actually his boss because my oncologist is on vacation, and all my deets are good, beautiful and wonderful.
The old CA-125 comes in at a respectably low 8. And, as they say, I can live with that.
Beyond that, summer is moving too quickly. School is taking too much of my time. My sights are set on the wide open opportunities for hedonism in August, when my only hurdle will be hedonizing around my work life.
School is the classic balancing act of one course I really enjoy and one course that I despise. It will all be over in a few weeks.
I feel like things are improving, in little baby steps. Which is probably best because if they got absolutely great overnight, I may have been whiplashed.
There are more deep thoughts brewing. Unfortunately, you folks have to come second to my fascinating homework.
But don’t go very far. I’ll be back just as soon as I get this school work dealt with.
I hope everyone is having a lovely summer.
This particular article is from The Chicago Tribune, but I am hoping the story will get lots of airtime in lots of newspapers.
It is, potentially, a pretty important newsflash for me and my mutant friends.
Here is the text of the article, as printed in today’s Chicago Tribune.
~~~~~~~~~~~~
Study says X-rays may be harmful for women with genetic flaw tied to breast cancer
By Judy Peres
Tribune staff reporter
Published June 26, 2006, 9:23 PM CDT
In women under 40, mammograms are less accurate and the radiation is potentially more dangerous. But hereditary breast cancer often strikes women under 40.
“Maybe after age 30 the risk of cancer is high enough to justify the potential long-term risk of cumulative radiation,” said Dr. Olufumilayo Olopade, director of the cancer risk clinic at the University of Chicago Medical Center. “So we traditionally recommend that high-risk women—especially mutation carriers—start screening with mammography at 25.
“This [study] calls into question, is it possible by starting so young we might increase their risk?”
MRI could eventually become the preferred screening tool for high-risk women, said Olopade, who wrote an editorial accompanying the study. But it’s not a perfect solution.
MRI alone can be hard to read and have a high rate of false-positive results, which lead to unnecessary biopsies, said Dr. Virginia Kaklamani, an expert in breast cancer and cancer genetics at Northwestern University.
So, if a radiologist found something suspicious on an MRI, she said, “I’d probably recommend a mammogram” despite the radiation exposure.
“Until we have more research,” Kaklamani said, “younger women with a genetic susceptibility to breast cancer are between a rock and a hard place.”
David Goldgar, a genetic epidemiologist at the University of Utah and lead author of the study, said it is too soon to draw conclusions about who should or should not have screening mammograms. He said further research was needed to confirm the results.
The study “is not enough to mandate changes in clinical practice,” said Dr. Kathy Albain, director of the breast research program at Loyola University Medical Center in Maywood. “But I think it’s enough to modulate our recommendations for certain patients.
“If you have very young patients who are also BRCA carriers, maybe you don’t send them for a chest X-ray at the first cough,” she said.
Kaklamani said women known to be mutation carriers might also think twice about getting mammograms before age 35.
The European study did not look at breast X-rays, but the radiation exposure with a mammogram is significantly higher than that with a standard chest X-ray.
The researchers hypothesized that radiation might be very risky for BRCA mutation carriers because those genes are believed responsible for repairing DNA damage. Defective genes would be less able to repair radiation damage.
Dr. Lydia Usha, who runs the RISC (Rush Inherited Susceptibility to Cancer) Center at Rush University Medical Center, said more high-risk women might decide to have prophylactic mastectomies—surgical removal of both breasts—if the study results are confirmed. Most patients don’t choose that option now.
Maria Pradd, 38, is one of Kaklamani’s patients. A former sales training and development manager, Pradd was diagnosed with breast cancer in 2004. Only after having a lump removed and undergoing treatment did she discover she had a BRCA1 mutation.
Pradd said she will consider having her ovaries removed after she has children, to reduce her risk of getting both ovarian and breast cancer. But she is not interested in prophylactic mastectomy.
She’s philosophical about risk, and about how far she’s willing to go to reduce it. “I know my chances of having another cancer are greater now,” said Pradd. “But I could also walk across the street and get hit by a bus.”
She said she would like to add an annual MRI to her screening regimen, but her insurance carrier so far has balked. A breast MRI can cost between $1,000 and $3,000. Mammograms are about a tenth of that.
The odds of having one of the known breast cancer genes is about 1 in 800 in the general population, said Usha. But it can be much higher in certain ethnic groups, such as the 1 in 40 figure for Ashkenazi Jews, or Jews of Eastern European origin.
I have some time on my hands and a mid-term tomorrow that I should be studying for so what better time than now to attempt to fire something off to explain a bunch of highly personal crap from inside my toasted head.
It’s hard to figure out where to start but here goes…
A few weeks ago I was talking to my therapist gal at the Cancer Agency and she asked me if I worry about having a recurrence.
I said,”Well, all the numbers come back as good news, and everything has gone as well as anyone could hope for inside the parameters of a nasty situation, and I am certainly aware of other women who have much, much harder struggles with this disease. So, I guess I feel pretty lucky, on one hand.”
And I thought about it for a minute.
And we talked about some tangent for a few minutes.
And then I said, “Actually, I am crabby and angry and tired. Really, really tired. I am all those things because I am afraid, always afraid, of a recurrence. I am tired of being scared but I don’t know when the moment comes when I get to stop being scared.”
I live with fear buzzing in my ears like powerlines in the rain.
I don’t have a solution for this.
I told therapist gal all this and she said I should tell people.
I said that I thought people had done a great deal for me when I was actively sick and that, in their own right, they were tired.
She said that she thought people would want to know.
I said I didn’t know how to talk about that stuff.
She said that when people ask how I am, I should tell them at least some glimmer of what is going on.
She said that about 5 weeks ago and I haven’t succeeded even once to roll that strange, personal, and spectacularly depressing factor into a conversation.
Since I only do things big or not at all, I decided to abuse the internet and just blast my information out on a global level.
So there you have it.
My head is just a scrambly mess and I have no idea how to untangle it, but I do sort of believe that telling people that I am completely off my nut is probably a good next step.
And you know… it’s all so completely weird.
At the end of the day, we are all going to die. I just find it weird to be in a spot where folks discuss that statistical probability of that happening sometime that I consider way too soon and also the complete weirdness of people figuring that they have a fairly good idea what I might die from.
I would argue that I could be hit by a bus instead, but I already did that, just a year ago, so where’s the humour in that?
Cancerbaby’s death really crystalized all this for me.
I mean, on top of the anger and the grief I have that someone so sharp and so young and so brilliantly entertaining could have her circumstances go so badly, so quickly, well, actually all of it just ends up being a lot like being bitten in the ass by a pitbull. There is no guarantee for any of us… really, *any* of us. And, once you finish chemo, you try to put a whole lot of distance between yourself and your (previous) illness and you put a lot of emotional energy into doing whatever sort of mental gymnastics work to convince you that you are dodging the bullet from now on.
I have been lucky and my numbers are good.
I know women who haven’t been so lucky.
Some of them have just had a long, hard, constant battle.
Some have died.
Compared to them, I feel like it is wrong to admit that I am scared or that I am angry (read – scared).
And actually, if we are going to tell a whole lotta truth here tonight when we should be studying, I feel pretty lonely in this, sometimes.
I suspect people think I am fine, or as fine as any of us are.
So, this is me, reaching out, as gracefully as I can.
I know I have been grumpy and stand-off-ish.
What I need people in my life to understand is that I have been lonely and scared to death.
I need you to understand that even if my eyebrows grew back, I am still reeling, trying to make sense of what happened to me and why, and what happened to that entire year of my life and how can I ever catch up.
I am trying, little by little, to just look at the stuff I am afraid of.
If folks who know me could offer some fun and distraction along the way, or maybe even ask how it is all going if you are interested, that would be cool.
And, as always, it’s hard for me to arrange time, between work and school and trying to have a relationship even when my head is mangled, and trying to just roll out of bed each day and put one foot in front of the other cuz one day things will shift and it will be easier.
So, you folks in my life, no matter what you may think, I don’t think you should be a stranger.
Especially since no one is stranger than me.
it was great to see you and watch the hiccuping HP. i had no idea this stuff was going on in your bleached head. please feel free to unload some of this stuff or just rant. otherwise i’ll have to keep reading your blog to know what’s up with you.
Love you, knew all this, so there.
JE
Being an out of town “in-law” for such a long time and now having been closer, I know we haven’t spent all that much time together or talking but I figured that some of the things you just spoke of, had to be in there, how could you not feel all those emotions.
I am not good at putting things into the written word, but here goes.
Please know I am here if you ever want to come visit and talk, or if there is anything I can do.
Love
Fi
You posted for friends in your life to check in. Well. I am not one of them, I am a stranger to you *grin* but I am also your neighbour – flying past your house everyday almost… sometimes more than the requisite home-work-and-home-again run for almost 3 years aware that you were going through this challenge.
I was at the folk fest and standing watching the show Ivan had put together I saw a couple I knew had moved out of town and we were talking then an old creativewriting school buddy of mine who had just performed came to say hi to them/me and an address book was opened and there was your blog url posted.
So you passed through my mind.
Not that is the first time. My mom’s lymphoma came to light last year and returned this April so we are on to more chemo with less options than I would like. devastating to the pocket some would say – We say most expensive to the spirit.
So I want you to know that I read your blog throughout last year. every now and then… and having plunged into the deeper than last year’s twilight world with no signposts, no bright lights, no all clears and nothing but wondering if I should read Dante and update his version of the seven hells….well. I think … if I could be so bold – something called surviving not only your body going awry but also someone else who was working on survivin’ too and seeing em not make….. it is a helluva thing.
So while my mom climbs up into her mental hammock of peace and looks down her body and procedures goings on. I hang on and strip the pleasantries often exchanged without much truth to it – down to the facts without frightening the folks used to me being the supportive, witty one.
Sometimes sapping one’s energy – staying in the fiesty, funny obnoxiously witty mode – surprised how it bounced back when I mention the dark side- which you just did. Some people run. Some are on stun and then some of us pipe up. No advice here – I’z jus’ sayin’ for me…I think I hear you
and to he… er I mean to France with those who can’t deal with it! (that’s me chanelling my grand aunt lucille)
I want to let you know that I’v been sending good vibes your way while getting through running past the trees around the track, past the hedge ’round your house, dodging little kids, smoking teens, baby strollers, oldladiessteamrollin’ – to catch that damn 135….even though I don’t think you and I have ever exchanged a word that I can remember.
I’ll just say it takes more courage to tell the truth in these times- so as they would say where I am from: Come with it!
See you meebee at BofP….
Flame
So, here I am, a day late and running out the door for work, but I wanted to make a timely, if a tad late, post about Father’s Day.
I am not really someone who is dazzled by the new age man, the metrosexual male or any of that other re-wrapped crap.
But I do work with quite a few young men who are fathers. And one of the things I have learned from these men and seen in these men is that they adore their children, above all other things. In fact, they often speak more glowingly of their children than they do of their partners.
I grew up surrounded by sailors, who were often quite drunk, when they were around at all.
I have absolutely no clue whether my dad, and my friends’ dads, adored us this same way and just couldn’t say it or express it or find the time to spend with us.
And I confess, it never, ever crossed my mind that my dad would have worshipped me this way. And, because we have some shocking similarities, I was always my dad’s favorite, but I never thought that he stood in the engine room of whatever destroyer he was posted to at any given moment and bragged how my ball team won the game or what books I was reading or what delightful things I said recently.
I really have no idea whether these boys I work with are just part of a new, snaggy generation or if my dad and his peers did all the same stuff and I just never knew.
I just really, really like that those fellas adore their kids so very much.
It’s freakin’ lovely and it gives me some wee measure of hope for the future.
It was a strange day, that Sunday. I really had been fully prepared to have my knees knocked out from beneath me because of the whole Mother’s Day-ness of it all. Learning that Cancerbaby had died was sort of like getting sucker punched. But that’s not completely true because I knew she wasn’t at all well, and that things were coming to an end for her. Still, I held on to hope for her.
I spent the biggest chunk of Sunday at work, and I thought I was sad but basically okay about it.
And then I left work and I started to unravel. I have to say that I did a magnificent job of unravelling.
Today, most of what I feel is confusion.
Several folks have stepped up and have tried to be supportive while I sob or go catatonic. There are so many layers and so many ways I feel bad in this, I don’t know where to begin.
I feel this staggering degree of grief for Mr. Cancerbaby. I try to imagine how he puts one foot in front of the other and I realize that I can’t comprehend what he must be feeling. There is a big bruise on my heart for Mr. Cancerbaby.
And I feel sad and horrified that someone who was so smart and eloquent and so young and who went through treatment at more or less the same time as me got the crappy bend in the road.
Mostly, I am numb and confused and I keep thinking that this should never have happened.
One of the few things that is a good thing in all this is how all the OVCA bloggers have come together and passed the word. I feel like everyone is trying to do whatever sort of tribute makes sense for them.
I dunno.
I remain stunned and saddened, and mostly I just think it is such a spectacular waste and that it is so very wrong that she is dead.
Thinking of you Spike.
Love
Fi
Rock on, Spike
Suburban Girl
And you should still do that.
And I just read Cancerbaby’s blog, and, well, she died on Friday.
She was 33.
Thanks for helping me with my journey, CB.
Happy trails to you.
Hugs Spike
So I wrote a post about that, and it felt not completely spot on, but I posted it anyway.
And then we had a server crash and everything that happened on the website since the last backup of the site, well, that stuff went to the abyss of lost text that exists somewhere in the ether.
So, two years. Holy cow, eh?
Lucky me.
And I do mean that. I know that I got a really good deal in a really crappy situation. I have no guarantees that I won’t have a recurrence. I only have the good thing where the longer I go without a recurrence, the more likely I am to be able to avoid having one, statistically speaking.
Fingers crossed.
That said, I want to talk about the whole crazy world of blogging about having cancer and what that is like.
See, at some point in the past Louise found my site, dropped me an e-mail and asked if she could link her blog to mine. I was delighted to have been hooked up with someone who could understand all the finer, agonizing details of the OVCA ordeal and said “sure thing” pretty dang quick.
Through Louise, I hooked up with several other women, all of whom were doing their part to dropkick ovarian cancer. One of those women is Cancerbaby. Cancerbaby is a brilliant writer, and, I suspect, a brilliant woman. She hasn’t made many blog entries lately and now, things are going rather crappily for her. And I feel very, very bad about that.
My girlfriend, in her great wisdom, has a belief that people you “know” through the internet but have never met in real life are “your imaginary friends”. The one exception to the imaginary friends rule is the women I have connected up with through our ovarian cancer blogs.
So Cancerbaby’s circumstances have become awful, and I feel awful.
At the same time, I know some part of what it is like to be terribly, terribly sick and how you know that most people actually can’t actually comprehend what you are going through or how wretched you feel. And on that level, I know only a small speck of what Cancerbaby is going through. And while I am grateful for my ignorance, I am very sad that someone I feel that kindred connection with is suffering and having to fight so hard. I am sad that someone has to feel even worse than I did, and to know that she has been feeling worse for quite a long time.
I wish I had some upbeat note I could leave this on, but I am coming up short on that score.
Please send whatever sort of kind and caring thoughts you can to Cancerbaby.
Holy cow, yeah.
My fingers, toes, eyes, legs, arms … all crossed.
Anniversary’s are all a bit strange … you never know what to expect and how you might feel or if the day will just go by like any other day … it is all a bit strange.
While our journeys are very, very different, I hear so many things in your words Spike, that reflect feelings, fears and hopes similiar to mine. Your words cause me to think, reflect, feel and connect with my own “humanness”. That is a very special gift, it helps one shine the light on more dark corners of their own experience and the illumination, although uneasy at first, ultimately can make these corners much less scary.
Sending out light and healing love to the universe.
Fi
Hope this message finds you well.
Part one of the whole David Copperfield thing of me and ovarian cancer goes like this, in a nutshell.
A bunch of doctors decide I need surgery.
I say okay.
Meet with surgeon who says,”Yes, let’s cut you open.”
“Okay,” says I.
“Unfortunately, the nurses are about to have a job action, check back when that’s all dealt with, eh?,” says he.
Nurses strike ends on a Monday. On the Friday of that week, I am in the hospital, in the first of many ugly blue gowns that really show off my ichial tuberosity.
Anyway, here’s the punch line you all have been waiting for. Doctor says, “Hmm, cancer. You’ll have to do this, and this, and then this. And this is a new doctor, go see him.”
Actually, my surgeon was great. I think my circumstances would be way different without him.
All this shite happened on the Mother’s Day weekend of 2004.
That’s how I remember when it all happened.
Lance Armstrong says he doesn’t celebrate his birthday anymore. Instead, he celebrates the day he was diagnosed with cancer, because it did so much to make him get off his ass (?) and do more with his life (?) and make the most of every day. So, for my buddy Lance, who I do actually hold in high regard, being diagnosed with cancer and everything that came from that was a good thing.
My own personal feelings on the matter are a bit more ambivalent. (But then, I didn’t invent those little yellow bracelets, did I?)
But the day is approaching and, at the very least, requires a bit of reflection on my part.
The second part of my David Copperfield OVCA story goes like this.
This is the part that I don’t actually talk much about.
Mother’s Day is also the time when we are supposed to pause for a while from the crazy pace of our crazy lives and give some attention and love and admiration to the women who birthed us.
Now, it’s my understanding that Mother’s Day was originally a day of political protest, when mothers rallied to protest their sons being sent off to die in the World Wars.
And then Hallmark got ahold of it and neutered (spade?) it and it became about carnations and breakfast in bed.
But I digress.
I think almost every mother deserves *at least* a day a year to get the reverence she deserves.
And I would be happy to steer some of that in my mom’s direction, but that’s a bit of a meaningless gesture these days.
My mom has had Alzheimer’s for several years now, and by the time of my diagnosis, really couldn’t be left alone in the house. As a result, my mom never knew that I, the youngest of her kids, had this god awful disease. My mom has no idea who I am when I visit her and can no longer put sentences together.
I think very, very highly of my mom. As much as she contributed to the ways I am neurotic, she also contributed to the ways I attempt to be fair and ethical and trust-worthy. She taught me that racism and anti-Semiticism were wrong, way back in the early 60’s. There were no other caucasian people around me who said things like that, or dared to say, “That joke wasn’t funny, it was cruel and racist.”
She spanked me too often. She taught me that it is important to be polite. She was, more than anyone else I am related to, interested in ideas and how the world was changing, and she was always excited when I got to experience something that hadn’t been available to her when she was my age.
Of her three kids, I was the one who was the least like her in many ways, and yet when I grew up a bit, I always had the feeling that I was her favorite.
And in a weird way, I could also see ways that my brother was her favorite. And the ways that my sister was her favorite. And all of that was really nice. To get that groove that she ended up really liking all of us, in different ways, but liking us. That was great.
In short, I miss my mom.
I miss my mom pretty much every day. Something comes up, and there is an ache in my chest and I miss her.
When I was diagnosed, there were times I wished she could *know* and be my mom and do the mom thing and try to make everything okay.
And, in my less selfish moments, I was kind of glad that she didn’t have to know that her baby was in this dog fight with cancer. Because it would have broken her heart and there was nothing she could really have done to fix it, and so maybe it was really best that she never had to know.
So, Mother’s Day is looming and I always feel like I should *do* something around all that and all the various layers involved in all that.
I expect what will happen is I will go to work and come home and probably spend the night hanging with myself, trying to make it all as normal as can be.
I guess I will let you know once I have done it.
And to you all, don’t forget to call your Mom. I’d consider it a personal favour.
DreamerGirl.
Thanks for your kindness. I appreciate it. And I’ll be okay. On some level, it feels like huge progress to just admit it out loud or online. I confess, this is about the most I have been willing to say about it in either medium.
I suppose the other detail I neglected to mention is that my mom has always been the family historian, so could maybe have provided a bit more depth to some of the cancer questions.
So it goes.
My hope for my mom is that she actually is lucid underneath it all and she has decided that since we treat her like a gabbering id-jit, she will adopt the mannerism of our crazy-ass gibberish tribe, probably as a courtesy, but under the surface, she is just still as smart as ever, watching her PBS and Knowledge network shoes. And even that crappy Oprah.
It’s freaky to wonder where the brilliance went. Is it still in there, tired and buried under the worn out grey bits or did it begin to erode and wash away with each shampoo treatment? Or is she just wishing we would get it and that we and the medical profession would stop drugging her into oblivion.
I could go on and on and on. But I will leave it at that.
And also, we had a little server crash and anything that went up during that chunk of time, well, it came right back down.
Including a post of mine… which is fine cuz I wasn’t sure I liked it anyway.
Thanks for trying twice, and say hey to your mom from me.
Spike
I don’t want to do anything that might diminish my rep as a miserable old ratbag, so I worry what the cost may be if I post that things have been pretty downright dandy lately.
For one thing, the weather has taken a lovely turn for the summer-ish side of things, and while it certainly isn’t summer yet, I am happy to sit through the dress rehearsals.
And I had a realization just the other day that a year ago, I was in Kaua’i with my sweetie and a couple of really good friends and I had a spectacular time. Which got me to thinking how great it is to go swimming with tropical fish, and also that things have certainly been hard over the last couple of years, but there have been some really wonderful chunks of time mixed in along the way, too.
Over the last year or so, a lot of my stress has come from ongoing medical issues with my family, and while none of those situations have had a wild and Disney-like recovery, and they never will, none of those situations has gotten any worse recently, and that’s a bit of a relief.
And last week, I wrote my last exam for that semester. And that feels like a great relief, even if I did have a moment of temporary insanity that caused me to register for two classes over the summer. I figure I can still drop them if my inner sloth totally takes over.
It was my birthday last week, and my sweetie gave me a Coleman stove, which is so great because I really love to camp and the stove I bought last year suffered from some defect that caused the pipe to erode and snap open. The pipe that carries the gas from the can to the stove. I came quite close to becoming the English Patient while trying to figure out why my stove, which was two months old, wouldn’t light. So, this year, Elaine bought me the name brand replacement and we shall be off in the woods in no time. And I love that idea more than I can say.
I have also spent a chunk of the last few weeks working in my old job, the job I had right at the time of my diagnosis/surgery. See, at the time I had the surgery, I really just thought that the surgeon would cut out the tumour, which I sincerely believed would turn out to be benign, and I would have 6 weeks off work, from May till July, and then I would go back and everything would be same old, same old.
Clearly things didn’t quite go according to plan. But I had only a couple of days notice before the surgery and and it was all a whirlwind. And after the surgery and nine months of chemo and the recovery from the treatment, I got offered a position with a new project that seemed less stressful. But for this last week, I have parachuted back to the old work site and there I am, just like nothing ever happened. Some people remember me, but there are lots of new faces. In some ways, it really drives home the point that the show just keeps on going and going and going. That helps me stay back at a healthy distance, I think.
But my point is, it’s been nice and it’s been interesting and, in some ways, it’s been gratifying to go back. It’s also nice to know that I have my real job that I will go back to. Still, it’s interesting to feel like I have been a part of something important.
And yesterday, I saw my friendly neighbourhood oncologist who said that my CA125 count is at 7. Elaine and I let out the breath we had both been holding for the last week, since the blood draw, and were giddy with the joy that comes from such news and also from connecting one’s lungs with O2 after such a long period of deprivation. Very, very happy about that news at my house.
And now it’s late and the alarm will go off way too soon, even if it is my day off tomorrow. And just a few feet away from me, my sweetie is sleeping and making sweet little sleep noises and all around her are the cats, and it’s all so sweet and right. So much sweetness.
I guess I am gonna lose some Eeyore points for this post, but what are you gonna do?
I bumped into a woman the other day; a woman I used to work with. Actually, a woman who tried to impale me with the forklift when I didn’t do her bidding. That was pretty much the last time we spoke untl I bumped into her at the gas station on Tuesday.
To be true, I didn’t recognize her or I would have laid rubber from here to some distant suburb. I still had the nozzle in the tank when she started talking with me.
I said hi back and made a politely reverential remark about her brand new grey Mustang convertible.
“Oh, yeah. My dad killed himself a couple of years ago and I bought this with my inheritance.”
Oh, golly. I have a crazy and sometimes brutal life and that is one of the chilliest things anyone has said to me in a long long time. And if you take out the times when I get paid to listen to horrific stuff, it’s been a really super long time.
“Sorry about your dad,” I say.
“Oh, it’s been a couple of years now; I am okay with it.”
“Oh,” I think.
“I heard you were sick.” says the gal who once tried to kill me.
Now, ironically, I have just come from my bloodwork appointment and still have the wee band-aid on my arm.
“Yeah,” says I, “I was sick” (Because in case you didn’t know, sick is a euphimism for any dastardly disease that makes your life more complicated than other people’s.)
“How are you now?”
“I dunno,” I say, pointing at my fresh pink band-aid, “I’ll find out next week.
It still strikes me as odd that we say “sick” to mean the flu or cancer.
I think this requires more thought.
There is more to say about all this.
Euphemisms are invariably designed to respect boundaries. Even freaks use them without knowing why.
I got lots of feedback and such for that last post about trying to be grateful while feeling really pissed off and ripped off and more than a bit confused.
Oddly, it seems to be all cancer survivors who wrote to say anything about that post. And really, I think that is both fine and cool.
I think it is really interesting that I am not the only one who is just fantastically pissed off about having gone through this nasty cancer episode. It’s good for me to know there are other folks out there who are a bit pissy about the whole thing, because, as I mentioned, I *feel* like I should be ever so happy to have made it through, this far, to the other side.
And, as I mentioned, I am.
And I also really miss the person I was before cancer came in and bleached a whole lot of sunny emotion from my life.
I don’t really want to say that you can’t understand unless you have gone through something similar. But I think most people actually can’t. I am not trying to be all precious and unique.
It’s just totally weird.
And it happened, and I would like to move on.
Here’s the flipside.
Here’s the sunshine head episode. People who know me in real life may need to walk away now.
But here’s what I have been thinking lately.
I know this cranky man through my work. Being cranky is his day to day approach to life. If a crisis comes up, he has a variety of different personas, most of which are friendlier and easier to be around, and he opens the bag and lets some other aspect of his personality come to the forefront, and it’s very interesting.
It’s very interesting to me to realize that being cranky is a choice he has made and it is his default position.
It’s interesting to me to see how he is happy being unhappy.
And I don’t want to be that beast.
And that’s part of what is freaky about the whole ‘pissy apres cancer’ scene. When does the crabbiness stop being reasonable and when does it start anchoring itself on to your soul and make every day an Eeyore day?
Okay, so anyone who really really knows me should really really turn away now.
Cuz the sunshine is about to become blinding.
Here’s the thing of it.
And this is a message to myself way more than it is a message to anyone else.
Every day we wake up and, to some extent, we get to influence what sort of day we are going to have.
I think the most important thing we can bring to any day we have above ground is some degree of compassion and caring for the people around us.
I think we all have to decide who we want to give our compassion to, but really, that stuff, those fluffy emotions, are the things that make us human and it is those things that we do for each other that make life worth living.
So, there you have it.
The sunshine episode.
Don’t get me wrong; I ain’t got any of this down yet. But it is on my mind.
I guess my point is, I think we have every right to be angry and grumpy and confused and testy and anything else we may feel.
And at some point, I think we have to swim back and join the school we came from, even if we did get pulled up on the deck of the boat. For whatever reason, we got kicked back in the ocean and we got another chance.
So maybe we still got the wound from the fish hook, but it’s way better than being surrounded in mayonaisse and sourdough bread.
We have a second chance and we gotta get swimming.
“the grouch and the brainstorm are not for us. They are the dubious luxury of so-called normal men, but for us they are infinitely grave. They are, in fact, poison.”
You have every right to be pissed off. Doesn’t mean it’ll make your life any better. Being angry and being a crabby assed mo’ fo’ arent’ the same.
And for you to be miserably cancer-free? Better than dead, but by how much?
I don’t know how to explain it to you. Honest, I don’t.
I would be infinitely pleased to have a burst of joy wash over me. I put a lot of effort in to trying. Most every day.
And if I could just wish it away, I promise you, I would.
I am putting all my extra energy into getting my life back on track. Sometimes that is frustrating, sometimes it’s tiring, sometimes it’s annoying to see how I fell behind on things I planned on doing and I have to scramble now.
I actually think it can’t make sense to someone who hasn’t done this.
But I appreciate that you pay attention. I really do.
But I *do* know that there were some good things that happened because I had cancer. As I think I have mentioned here before, some old friends came pouring out of the woodwork.
This is good, especially when you bear in mind that other, relatively new, friends ran for the hills.
And actually, I am not even mad about it. It taught me some things about the importance of showing up when people you care about are having a hard time, rather than just talking about what you think you might do or what you should do or what you are thinking about doing.
But I digress.
I was chatting with this old friend, and I was thinking lately, about my overall level of crankiness in this post-chemo time in my life and how I feel this pressure to be happier and more grateful. I can’t quite identify where that pressure comes from. Maybe it’s just from inside my own fuzzy little head.
But I think it’s bigger than that.
But that part isn’t what I wanted to write about today. I wanted to write about the draft.
I want write about how it feels to be less than delighted, all things considered. And don’t get me wrong. I am plenty happy that, so far, I am on the right side of the ground. Happy, happy, happy about that.
I think a bunch of things happen when you are trying to wrestle cancer to the ground.
1) It totally screws with your head.
How could it not? Some folks who read this blog will know full well how completely bizarre it is to have a stranger in a lab coat tell you that your chances of staying on the daisy side of the dirt, instead of the ‘pushing up’ side of the dirt, are less than spectacular. If you have never had this conversation, just trust me that it messes with your head. And I don’t even mean to be ironic when I say it’s life altering.
2) I don’t know about anyone else’s approach to their illness but mine. And I decided, in the times I felt well enough to remember that this was my strategy, that I was going to fight this mo-fo the entire way. And that even though the statistics for making it were freakishly bad, the statistics actually do prove that some people make it. And I had to set my sights on being one of them.
And what happened with that is I took the stubborn component of my personality (which is really quite small in day to day life. Just really a wee speck of a thing, it is) and let it run the show. You know that saying about “it isn’t the size of the dog in the fight, it’s the size of the fight in the dog”? That’s how I felt. I let the fight in me take centre stage.
I think that was good. But it meant I came out of the gate swinging, even when I didn’t need to.
I am still learning how to undo this one and respond like a dog that might be allowed in the house.
I realize the following comment is going to doom me to geek status, but coming out of chemo-land, I felt a lot like Buffy in season 6. Like I have been pulled back from the dead and that I may have become a bit anti-social while I was away, and meanwhile everyone thinks I should be so happy. And I am happy. Really, truly, I am. But it’s more complicated than that. Happy is one emotion I feel. I also feel confused and a bit lost. I feel scared in ways I can’t even talk about and I am not sure anyone wants to hear about, anyway. I feel angry, though less and less as time goes on. I feel completely stunned that something like that happened to me and on a day when my denial skills are particularly sharp, I can pretty much convince myself that it didn’t happen. Until I see the 12″ scar on my gut. And I think, “Oh for the love of Pete, Spike, terrible things happen to people all the time. You in no way have the market cornered on this, and, for a totally shitty situation, you couldn’t have had better results along the way, so shut up and get on with living your life.”
And I get freaked out that the world kept chugging along and now I have to run like hell to catch up. It’s a totally grab bag of emotions. I’d advise gloving up before your ram your hand in there, cuz some of these things are corrosive.
And the reason I write this is not to complain about anyone, except possibly myself. People have been very good to me, and very kind. Really, at this point in time, I hope that maybe I can help other people who are wading through this bizarre territory and maybe make them feel less isolated if they are having mixed emotions.
So, it’s not that I am ungrateful. I’m just trying to help.
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.
Coretta Scott King, Martin Luther King Jr.’s widow, died of ovarian cancer recently.
Perhaps because she was relatively famous more women will be aware of OVCA and fewer will have to go through this ordeal.
Perhaps.
But really, right this second, when I think about ovarian cancer I am filled with a mixture of anger and fatigue.
So many great women, being consumed by this terrible disease.
I am sad and furious and exhausted.
And sometimes terrified.
And, so far, I am one of the luckier ones.
It’s all a bit much to make sense of.
This entry was posted on Monday, March 20th, 2006
July 10th, 2006 at 10:36 pm It seems the more we learn, the more confusing it all becomes…..