Thursday, April 29, 2010

Breast Cancer Breath

You've heard of garlic or onion breath haven't you? The unfortunate onsumption of the wrong food choice which causes this condition has ruined a lot of first dates.

Well, now we have a new contender for the date-ruining crown: breast cancer breath. And, I'm guessing that if you are hapless enough to end up with breast cancer breath, you are going to miss out on a lot more action than if you had both garlic and onion breath combined.

According to this video, from Detroit's Channel 4 news, there is a new test that can detect early breast cancer, and all you have to do to get diagnosed is to blow into a breathalyzer.

Or, apparently, into a dog.

I have many questions after viewing this report:

video

In the video, they open by discussing this device that will detect early breast cancer on your breath, but oddly, they cut away to a scene of a woman and her dog.

This woman is allowing the dog to lick her in the face. Don't people who let dogs lick them in the face know what dogs do with their mouths? My own personal dog loves to find little snacks in the cat box, and then lick his own male parts as a chaser. I happen to know that he never brushes his teeth. The aforementioned onion breath would be a definite improvement over what he's sporting.

Anyway, after the dog spreads e-coli all over this woman's face, she asserts that her canine companion told her she had breast cancer.

The newscaster intones, "Carol Witcher says her dog, Floyd Henry, knew something was wrong before she did."

Carol explains, "He looked at me strangely and pushed and snorted my right breast, and pushed and snorted, and pushed and snorted," Carol says. "And, I'm thinking, something's not right."

I would have to agree with that statement. Something is not right.

Now, I do know dogs have remarkable senses of smell, but if a dog sniffing you in a certain area of your body is indicative of cancer, than I really need to get myself a colonoscopy and a PAP smear. Because, my dog seems a lot more interested in what is going on down in the vajayjay area than he ever was in my boobalicious area, even though I had a big old tasty cancer practically popping through the skin. My recently deceased Labrador, who would and did eat everything, from socks to onions to watermelon to drywall, and who could sniff a raisin out of an air-conditioning vent, never even tried to diagnose my breast. My current Greyhound is a bit more picky, but see above about cat boxes: I doubt he'd turn down a nice, meaty tumor. Yet, neither of these slackers ever looked at me strangely to try and tell me that I had cancer.

Naturally, the newscaster (who happens to be an M.D.) agrees with the dog's diagnosis. "Turns out, Floyd Henry was right on track. Carol was diagnosed with breast cancer."

This is when they cut away to a scene of a gloved medical professional putting a top on a tube-like device, as the newscaster says, "This breath test confirmed the diagnosis."

(Of the dog, I might remind you.)

Charlene Bayer, PhD, who is running this breathalyzer project, says eloquently in regards to the value of this type of evaluation, "The big difference is that you go in and get your breasts crushed, or do a radiological test. What this does, is you breathe into it, and we measure just from the breath."

They don't really describe exactly what they measure, do they? Chemical compounds, is as specific as they get. I was impressed that this researcher stated that breasts were "crushed" during mammograms.

Hmmm...well, they are squeezed, they are pressed, they are squished, they are, perhaps, even tortured. But crushed? Doesn't that imply structural damage, like a car in a demolition yard? Like a soda can on recycling day? Like the hopes of a 13 year old at a dance who ends up sitting in the corner all night?

I think crushed is a pretty harsh word for a medical professional to use, don't you?

I sure hope that kind of terminology doesn't catch on in Doctor-World. Or, soon we'll be having some pretty gruesome-sounding treatments, won't we? Can you imagine how they might describe, say, a barium enema? "Mrs. Silberman, we are going to jam a big-assed tube the size of a hose up your butt, inflate a balloon, and then squirt radioactive stuff to ream you out until you scream."

The story continues with Carol talking about her doctor's prognosis, "And last May she says, 'Carol, you are cancer-free.'" Then they cut to the dog again, as Floyd Henry nods in agreement.

The newscaster confirms this, "Thanks to the breath test and a persistant pooch, Carol's breast cancer is now behind her."

Then Carol plays the harmonica as her dog howls along.

Really.

Now, here is my question: if that dog could detect Carol's cancer, and it was merely confirmed by this new breath test, aren't we spending our research dollars incorrectly?

Frankly, if I was the boss, Cesar Milan would be in charge of this particular breast cancer research. He could send out his pack to sniff the racks of women world-wide.

Cesar Milan, The Breast Whisperer.

Tuesday, April 27, 2010

The breast cancer flag isn't pink

At least, on me. It's yellow, white and green. The flag of "where the heck are the veins?"

After my last herceptin:



A week later:


I've seen drug addicts with less bruising. My poor nurses, I think they must fight over not to have to poke me at this point.

Monday, April 26, 2010

Tamoxifen

Imagine, if you dare, a woman with PMS. But, this is no ordinary woman, and this is no ordinary PMS.

This is the mother of all PMS, and by that I mean you combine the PMS your mother had (you know, the kind that caused her to wake you from a sound sleep by hitting you with a hanger because you'd left your socks on the floor) with the PMS of a woman who is naturally upset at the state of her hair.

Which apparently refuses to grow in.

This combination doesn't make for your regular, garden variety PMS. This PMS is volcanic in its power. It is the Tsunami of PMS. If this PMS was electrical power, it could take the entire city of Sacramento off the national grid.

Let's pretend you take such a PMS and mix it with an annoyance, such as, say, a car running out of gas.

Add the fun fact that this car has a broken gas gauge so one can't tell when it's near empty. And that somebody's husband - who normally very kindly fills up the car each weekend to prevent the aforementioned running out of gas - forgot. Just this once. Let's envision that this car ran out of gas, causing the driver, who just might have had a right breast amputation and is in the middle of reconstruction and isn't allowed to (nor can) lift more than a couple of pounds, to have to turn a powerless SUV around a sharp corner to park it.

You mix this mother of PMS, add car problems, no hair, and a strained chest muscle with a tissue expander wrapped around it, and what do you get?

A Tamoxifen explosion.

Chemical lava flowed all over that long-suffering husband.

Now, maybe I know the person who had the above experience, and I'm sure if I did she'd want me to apologize for all the bad words the people around her might have heard as she stood in public on her cell phone and screamed about how a husband who really loved her wouldn't f'ing forget to fill the tank up, and how it was completely assholish to purposely leave his cancerous wife stranded miles from home.

Let me just say I think it's highly unfair that I (oh, okay, I admit it, it was me) went through eight years of perimenopause, with its intense one-day a month PMS symptoms, only to have it started up again chemically due to cancer. I was happy to have my ovaries killed by chemo. I was ready for my well-deserved old-lady rest, and I think I can speak for my husband in saying that he was ready too.

If I had to guess, I'd say he'd happily trade a little laxity in the skin to not have to be called names when he doesn't do me the courtesy of filling my gas tank.

My doctor warned me about the side effects of tamoxifen, an estrogen-blocking drug: cervical cancer, blood clots, hot flashes, headaches, weight gain - and mood swings.

What he didn't say was that these mood-swings would be on the level of a 7.2 earthquake.

Unfortunately, unlike real PMS, there will be no Aunt Flo to come and calm me down. This is a chronic, unyielding, continual condition.

I have to take tamoxifen for five years.

I could have PMS-type mood swings daily for five years!

That would be a real natural disaster for all involved.

But, it'd make a cool movie. It could star Ernest Borgnine and Roddy McDowall as men who have to navigate an upside down world - while Shelley Winters tries to kill them.

Friday, April 23, 2010

Stand Up 2 Cancer

One of the organizations I support is Stand Up 2 Cancer. I do that despite the fact that they use a "2" instead of the word "to" in their name. It's a worthy organization. I believe in them because they want to focus on "translational research" - translating promising research into medical practice. Their goal is to bypass bureaucratic hangups, something a school secretary can appreciate, and cut down on the amount of time research takes when progressing from discovery through clinical trials and out to people. Something a cancer patient can appreciate.

Finally, the reason I support them is my personal hero, Dennis Slamon, is involved.

If you don't know who Dennis Slamon is, and especially if you are HER2, you need to get the movie Living Proof or read the book, Her 2: The Making of Herceptin..

Here is a previously unreleased video with Minka Kelly, who starred in Friday Night Lights, discussing the impact cancer has had on her life. Being a person who ignored her mammograms, I can't say enough about early identification of cancer.

If only Josh Holloway would do a PSA for SU2C.

People I Have More Hair Than....







People who have more hair than me:






I threw that last one in there because I'm cancerous, not dead.

Josh Holloway goes a long way into spicing up any blog, if you ask me.

Wednesday, April 21, 2010

Chemo - it's not over until the last nail breaks

Have you ever had that dream where your teeth start to crumble and fall out? Little tooth shards are in your mouth, but no matter how many you spit out, your mouth is still full of little splintery pieces?

Even in a dream, there is something disturbing about a part of your body crumbling uncontrollably.

So, you can imagine my dismay as I tell you that this is exactly what has been happening to my fingernails for the past two weeks.

My nails began to weaken a couple of days after my final chemo, and now they are splintering half way down the nail bed, past the point where you can actually file or trim. When I do something extremely dangerous, like button a shirt, they disintegrate. What's left of these tissue-thin crescents tend to snag on everything, and when they snag, they crumble even more. I've been protecting what's left with band-aids, which is, of course, extraordinarily attractive, especially when I use the Dora the Explorer ones.

My nails are as soft and weak as Sacramento's real estate market.

During the entire four months of chemo, I kept my nails. I lost my breast, my hair, my eyelashes, my eyebrows, and my entire feminine way of putting myself together. I still can't dress in my regular clothes, I can't blow-dry my hair, I can't put on mascara, and I can't wear high heels. But, I could at least polish my nails.

And, now there is little to polish. Parts of my nail beds are showing that have never seen the light of day. Poor things, they are blushing pink at being exposed this way.

I should add that having nails this short is uncomfortable. Now I know why torturers stick bamboo underneath their victim's nails - it's a very sensitive area.

(Although, I never got the bamboo part. You'd think knives would be more effective.)

Because they are peeling and starting to resemble the color of an old man's fungal-infected toenails, I decided to polish my nail stubs black. Super short, black nails are kind of cute and punkish. Kara DioGuardi who, unlike Paula Abdul, never had to wear a cast after "getting her nails done" sports that look, so why can't I try?

I discovered something interesting. When your nails are this weak, thin, brittle, and ready to fall apart, the polish color sinks underneath to the skin below - and stays. I didn't know this at first. I removed my polish when it started to chip, like a normal person, and then I walked around for a whole week freaking out thinking my fingernails were actually turning black and about to fall off entirely, when it was really just OPI-dyed skin underneath.

Chemo: the gift that keeps on giving.

It's a dream come true.

Monday, April 19, 2010

The Road to Recovery

At my last appointment, my oncologist said to me, "Did you make it to the field trip you were planning on? Because, you really looked like you were white-knuckling it"

And he held his hands up in a claw shape.

He got it right on the mark. Dr. Blair is a smart man. I had felt like I was hanging by the tips of my fingers on a rock wall with a thousand foot drop below during those days. The field trip he mentioned was the Regional Science Olympiad contest, and I accompanied my son only three days after chemo, barely hanging on.

This weekend was the State Competition. My last chemo ended 16 days before and what a difference 16 days makes.

The competition was held in Fresno. For those not in California, Fresno is a pit (sorry Fresnoians, but you know it's true) 165 miles south of Sacramento. You drive smack dab in the middle of rural California to get there. This is the part of the state that you non-Californians don't know about and probably never will because it's pure farm/factory country with nothing touristy to do.

Hollywood, which is where everybody gets their idea of this state, doesn't want to acknowledge that real people live here - people with imperfect teeth, who can't sing or dance and who are uninterested in show business. They forget that not all Californians sell dope, vote for Democrats and build tunnels under streets for frogs so the critters won't get squashed by cars.

In fact, Hollywood has done such a good job of selling California as a place of hippie weirdos or beautiful people with designer clothes, that I'd forgotten myself that normal people live here.

Even though I am one.

Thinking a long car ride might be too much for me, we broke it up by stopping for lunch in an area that reminds me of Iowa or Kansas or somewhere that I've never been. We chose a diner/coffee shop where men in overalls were talking about their farms and how much they disliked the government as they bought each other coffee.

I bet they had rifles in their trucks.

The only difference between California and Iowa might be that half the items on the diner menu were Mexican. I almost went for the Huevos Rancheros but just decided on fried eggs since I can't taste anything anyway and why pay an extra buck when it's now meaningless to me?

Our plans were to go down on Friday, spend the night, spend all day on campus for the Science Olympiad, and then spend that night there and go home Sunday morning. Most of the other families were leaving after the awards ceremony, but I felt a 3 hour drive might be too much for me after 6:00 pm.

The difference between the two competitions was for me, night and day. I volunteered at an event both times, but this time I stood for 2 hours without thinking about cancer, and last time I ducked out and tried to find a place to sleep. This time I walked the campus and watched the events - and didn't think about cancer. Last time, I spent most of my time huddling on a bench, trying to muster the energy to get through the end. This time, I chatted with teachers and other parents. Last time, I isolated myself because talking used too much energy.

In fact, this time I felt so well that I...well.... I felt normal.

It was only during the awards ceremony that I started to feel exhaustion creeping in. It was in the 80s outside and with thousands of people in the MP room and no air-conditioning, it was pretty hot. Normally, I don't mind being hot but when you add hot flashes to sitting next to a thousand people, you have an entirely different hotness experience.

The excitement of the awards was also wearing. Our team came in second, time after time, event after event. Our biggest competition kept coming in first, and it became discouraging. My son was a medalist in every event he participated in so he personally did well - but sadly, his team ended up second in the state - so close, and yet so far.

Being a mother, I'd have gladly done three more rounds of chemo if he would have won. (Chemo: my new standard for torture.) He's been working extra hours every day for five months to prepare for this competition but as I well know, life teaches us harsh lessons sometimes. The kids from other schools have studied hard too. His team came in second and he will have to wait until next year, high school, to try again. But, all is not lost. He learned lots of science being on the team; he learned to be part of a group dedicated to success, and he learned intellectual team work. So, he really did come out a winner.

He just doesn't know it yet.

As for me, my recovery from chemo is not complete, but I've turned a bend and now feel like I can see the end. I couldn't be more amazed at how far I've come, especially when I read back to that post I made just a few weeks ago. Aside from bone aches and a strong need for 12 hours of sleep a night, I'm on the Road to Recovery, and it feels so good.

As long as that road isn't leading to Fresno, that is.

Thursday, April 15, 2010

A Bug's Life

I left work today, and as I was stopped in my school parking lot waiting to make a turn into the street, a wasp landed on my side mirror.

Now, normally that would have caused me to scream and slam on the accelerator, possibly causing an accident, just to get that disgusting creature off my car.

I'm one of those women who doesn't like bugs of any kind. Even butterflies gross me out and cause me to make whimpering girl squeals.

But, my window was safely closed and the ativan I'd taken the night before must have still had calming properties, because instead I just wondered, "What is this creature going to do when I take off?" I'm not the most sedate driver in the world - cancer hasn't taught me to slow down and enjoy a car ride home. Speed limits are just estimates, if you ask me. And, they are always too low.

So, would the wasp fly off with the rushing air? Would it wait until I hit a stop sign and then leave? Did it plan on living on my rear view mirror, forcing me to sell my car and buy a wasp-free Lexus RX?

My commute is about 30 minutes, all through city streets. The beginning of my commute is a rural one with mostly stop signs, and as I get closer to my house I have more stop lights.

I spent my driving time watching this bug. At first, as I took off, its creepy antennae waved around. Then as I picked up speed, it hunkered down - legs curled up, antennae pulled in. At one point, when I did the California roll through a stop sign, it kind of side-stepped over to an area of the mirror where there would be less wind resistance.

Unlike many of my commutes where I seem to be forced to stop at every red light, this time I sped through all green. I wondered what this bug would do when I finally hit red. Would it fly away, so far from home? Would it miss its children, its wasp nest? Would it stay with me? It was clearly avoiding the conditions it found itself in, curled up in a tiny ball like that.

Maybe it was dead, killed by the wind.

Finally, I hit a red light, one that had just turned. I watched the bug. It took a few seconds, but it seemed to realize that now was its moment. It's feelers came out. It uncurled its body. It walked a few steps and spread its wings. Then it flew,hovering for a few seconds near my car, then off. It headed towards some bushes near the road.

I couldn't help but think that this bug was a metaphor for life with cancer. You are going along your merry way, when suddenly you land in the wrong spot. All you can do is hunker down and wait for it to be over. You end up in a different place than you planned, where you have to accept new conditions - but at least you didn't end up smashed on somebody's windshield.

And, that's something to be grateful for.

Wednesday, April 14, 2010

Cancer News

Housework cuts breast cancer risk.

I guess I should say good-bye to my remaining breast right now.

Because, it ain't gonna happen.


.

Tuesday, April 13, 2010

Sacramento Connect

Astute readers may have noticed a toolbar now appearing on the bottom when you read this blog. There is a reason for that: I am proud to announce my blog is now part of Sacramento Connect.

What's that, you ask?

Sacramento Connect is a brand new network, designed and implemented by our local newspaper, that will allow a reader to easily connect to other regional blogs. It will also make it easy for you to share what you find here on facebook or twitter. It's sort of a play on the old webring - you remember those? But, now you can choose where you go and what you see using the toolbar, and share items of interest.

It's an unusual but fascinating idea. While blogs have been connected by topic, interest, and friendship through the cooperation of bloggers for many years, connecting bloggers who have a variety of topics but live in the same community has never been done. I'm early-adopting again, and hope this turns out to be valuable for everybody.

I say early-adopting because my blog was chosen to be one of the first. Considering my topic, it's clear the Bee wants to connect diverse content and not only focus on blogs of interest to one area. If you will look across the partner network, you will see that there are blogs which will relate to a general readership - such as the Weekly Driver, which is car news and reviews, for example. And, there are some that relate to a specific area, such as Cowtown Eats, discount food coupons and restaurant reviews for the Sacramento area.

To use the new toolbar, find any content on Sacramento Connect you want to share. Log in to your accounts using the toolbar, and then you can take any photo, video or text and drag it over to the social networking icons and drop it there to send it out. You will see you can even chat using the toolbar, and so I'll likely try to schedule an online chat at some point and test it out.

Naturally, you are going to want to start all this social networking with my blog. Drop it in to all your friends who have cancer, know somebody with cancer or just might want to read about a person who has cancer - that means everybody - and lets see what happens.

Aside from the toolbar and this post explaining it, my content and topic won't change. I'll still be writing about me, and my life with breast cancer, with a touch of social commentary mixed in.

This network is in "alpha" now, so it's brand new. Feel free to leave any comments about the toolbar below.

Monday, April 12, 2010

An Awkward Situation

Just when you think your hair has grown back enough to ditch the wigs and scarves, you get a rude awakening.

Some sales person knocked on my door the other day when I was taking a nap.

I'd complain about the bad timing of door-to-door salesmen, except that when I'm home I'm always napping, so that would be unfair.

Besides there are plenty of other things to complain about when discussing these salesmen. For example, they are often scary-looking guys with missing teeth, trying to sell me $40.00 cleaning products I don't really want while peering behind me at my plasma TV.

Alternatively, they are elderly ladies dressed in pristine suits and sensible shoes hoping to sell me their religion.

Which I also don't want.

The only ones I get excited about are the Girl Scouts selling cookies, but they've gone corporate and no longer bother with door-to-door sales.

Probably because of their competition.

Anyway, my dog started barking, which is why I have a dog. A big dog too; I'm not the chihuahua type, although I hear they can be pretty vicious with their tiny, sharp, pin-sized teeth. Maybe oncologists should think about using them for getting hard to reach veins, like mine.

As my dog continued to sound like Salesman Meat was a fine idea, I raised my head to look out my floor to ceiling living room window, which I had foolishly left uncovered. Looking back at me, I saw a salesman of the toothless variety. I sighed and got up, big dog in tow.

I didn't bother to grab anything for my head, which I had also left uncovered. I figured a guy with missing teeth wouldn't care that I had 1/4 inch haircut; hell, he probably wouldn't even notice. My head has hair now, and I'm thinking that maybe next week I can even go without covering up. Sure, you can still see the scalp when the light is shining on it, and my ears stick out like a Goth at the Republican National Convention, but hair is hair, right?

In the right light, I think I might even resemble a boobless Jamie Lee Curtis.

(And yes, I realize that's not a flattering thought.)

I open the door, and the first thing the guy says to me - before he even tries to sell me anything - is, "Oh, are you a Survivor?"

My typical answer for that question is "I intend to be" but all I was thinking this time was "Damn, I guess I can't go without a scarf after all." Because, if this guy looked at me and thought "cancer" then I'm pretty sure I'm not going to fool anybody else into thinking I have a trendy short 'do. Or even that I play for the other team.

I'm going to be cancer girl for a while longer.

There are lots of awkward periods in a person's life. The time when you are eleven and your breasts are starting to develop and show, but you still can't wear a training bra is one. You are kind of stuck between girlhood and womanhood, not quite knowing what to do, but thinking that tee shirt your mom wants you to wear isn't enough.

Another awkward situation might be the time when you are 8 months pregnant and unmarried, working as a waitress, and your manager schedules you to work as a banquet server to your own ten year high school reunion.

Not that I know anybody as unsuccessful as that. But, it would be awkward.

So, I have to accept that this is one of those uncomfortable times in my life with cancer. I'm stuck in that gawky place between visible cancer patient and normal person. It's not like I can call in sick on this job of recovery or anything, like I did with that long-ago banquet job. (Oops. Okay,it was me: sorry if some of you had to wait for your chicken.)

So, I guess scarves it is, at least for a few more weeks. If I'm going to look like I have cancer, I at least want to be warm.

Saturday, April 10, 2010

Martina Navratilova diagnosed with DCIS

By now, most of you have heard the news that Martina Navratilatova was diagnosed with breast disease.

I avoid all sports like the plague that they are. Anybody who enjoys spending time in front of a TV eating chicken wings while they watch people play with balls is a mystery to me. (Hi honey!) Therefore, I know nothing about this woman, except that she played tennis and possibly made money doing it. If my Jeopardy question was "Who is Martina Navratilova?" I'd have answered "What is a tennis player?" but if they asked me if she'd ever won a tournament or made a perfect score of Love, I'd have had to switch categories to "Beers from Around the World."

So, when I got a google alert with her diagnosis, I almost ignored it - after all, she's no Maura Tierney - except that the blurb in the article actually said that she was being treated for pre-cancer.

The exact quote was, "DCIS is the most common type of non-invasive breast cancer and is sometimes referred to as Stage 0 or precancer."

Now, you cancer-free folk don't know this, but calling DCIS "pre-cancer" is sort of a controversy in Breast Cancer World, and I'm likely to get hate mail for even mentioning it. People are very protective of the dangerousness of their disease and believe "we are all in this together."

Except that we are not.

You can't compare the experiences of a woman with DCIS with the experience of a woman with Stage IV breast cancer. I've heard people try, and I understand that the fear seems the same to them, but it's unreasonable, irrational fear. You don't die of DCIS.

What makes cancer dangerous - what makes cancer CANCER - is that it is invasive. Which DCIS isn't. Invasive means the cancer cells aren't trapped in one spot, but have spread to other cells within the area where they arose, dancing and mating, and their uncontrolled free spirit have given them the ability to spread throughout the body.

Which uptight, confined, rigid DCIS cannot.

Cancer, by definition, can kill you. DCIS? Not so much.

DCIS (Ductal Carcinoma in Situ) cells don't behave like invasive cancer; they don't have the capability of spreading and growing in distant body parts. They are abnormal cells that line the ducts of the breast, but they will never spread. It isn't life-threatening and has a nearly 100% cure rate. Proposals have even been made to change the name to remove the word "carcinoma" from this diagnosis. However, the media has not picked up on this at all, preferring to jump on the pink ribbon bandwagon and promote cancer fear. So seeing it mentioned as pre-cancer in this USA Today article startled me.

Way to drop the ball on the fear-mongering, USA Today.

Now, before you stop reading and pick up your poison pen to write me hate mail saying I'm insensitive to the suffering of women with DCIS, let me say this:

I think it's the hardest breast disease to deal with.

Aside from Stage IV, which goes without saying.

You see, the unfortunate thing is sometimes DCIS changes character and becomes invasive. And, nobody knows why, how, when, or if. A woman might live her entire life with DCIS in her breast and never know it. She might get DCIS that disappears and never realize she had it. But sometimes a switch turns on and it becomes invasive cancer that can kill. Nobody knows when/why/how or to whom this happens.

So, it has to be treated as if it was early stage invasive cancer.

Along with my 3.4 centimeter largest invasive tumor (out of 3 total), I also had 4 centimeters of DCIS. Did my invasive cancers arise from my DCIS? Maybe. Likely. Nobody knows.

No question: a woman with DCIS has to make an agonizing decision. While she will escape chemo, she may have to take tamoxofen, she may have to have a lumpectomy, she may have radiation - and she may even have to have a mastectomy - knowing she doesn't have cancer, and knowing she never might. Worse, unlike the women with the BRCA genetic mutation who have a 60% chance of getting cancer, she doesn't even know her odds of it turning invasive. It might be zero or 100. There just isn't the data to tell yet.

And yet, she has to take that leap and cut her breast off.

At least with me, I had no choice. It was clear cut. Mastectomy and chemo, or eventually die.

That's not the case with DCIS, and that is why, I believe, so many women don't want to take the word "carcinoma" out of a DCIS diagnosis, and why it is so controversial in Cancer World. It's why many doctors don't want to change their wording either. You need that word to make the decision okay.

As mammography screening gets better, more and more woman are being diagnosed with the disease. What is not known is if there are more women than ever before with it, or if it just went unnoticed and women lived full lives with it, like many men do with prostate cancer.

Much more studying needs to be done on this.

So, Martina, who technically never had cancer, and who never had a disease that could kill her - who only had an increased risk of getting invasive cancer - she is going to become the new poster woman for breast cancer.

I'd much rather she use her platform and status to highlight the difference between DCIS and invasive cancer - not to denigrate DCIS, but to help solve the problem. I'd like her to educate people by explaining she didn't have a dangerous invasive cancer but still had no choice but to have disfiguring cancer treatment. I'd like her to use whatever fund-raising skills and name recognition she may have to promote research that will find out which and why some DCIS cells will become invasive and some won't, so women don't have to go through barbaric treatment unnecessarily.

Someday, I'd like the Jeopardy category involving her to be "The tennis player who helped prevent the most mastectomies?"

"Who is, Martina Navratilova?"


*******
In case you are interested here are a few links about DCIS from legitimate sources:

Cancer.gov description of DCIS

University of San Francisco

Dr. Susan Love

Abstract from the National Cancer Institute on Medscape

Health Central

Tuesday, April 6, 2010

Sharing the Pain

I had previously posted about the cliche of friends and family members shaving their heads in support of cancer, or cancer treatment or chemotherapy-induced baldness, or whatever it is they are supporting when they do this head shaving thing.

As I said before, I don't think my son's baldness would support or help me in my "battle" - but his cleaning the house sure would.

Yesterday was my 52nd birthday.  And, as my family gathered at my house, laughing and chatting and getting ready to go out to a nice dinner at Bandera, I thought about all the wonderful support they'd given me over the past few months.

But, I also wanted them to experience my pain.

Yeah, I'm evil. But tell me:  why should I go through this alone?  What is family for, if not to make them suffer along with you? There is a long historical precedent for family suffering, and who am I to argue with history?

I confess: I'd completely forgotten about the pure entertainment value of watching your family and friends shave their heads when discussing it in my previous blog post.

So, as my family got ready for our dinner - as they joked and laughed, I thought about how best to inflict the torture of cancer upon them.  Obviously, I could grab my Wustholf and cut off various parts of their bodies,  but honestly, my house was semi-clean for once and I didn't want to have to clean up blood.

I could fall back on the cliche I hate and request they all shave their heads in solidarity, but again, there is that hair-cleaning up thing, and anyway, I'm pretty sure they read my blog post where I said it wasn't helpful.

I don't want to be a hypocrite.

If I wanted to be really cruel I could grab a syringe, line them all up, make them put their arms out and and poke them repeatedly in the veins pretending I couldn't find a good one.  But it's just not the same without the Naugahyde barcalounger and a pillow with a paper pillowcase, and I am not buying a Naugahyde baraclounger, nor am I purchasing paper pillowcases.

Think of what happens when you drool on that flimsy paper.

Then it came to me.  A brilliant idea.

I'd make them wear wigs.

Uncomfortable, woven-weft constructed wigs.

After all, we are going out to a nice restaurant, and I was going to wear one.  Scarves are well and good for day-to-day life, but to be frank, my face exposed for all to see isn't the prettiest picture in the world and hair can cover a multitude of sins. 

On my birthday, I wanted to be sin-free.

(Well, sorta.)

So, I grabbed my wig collection, all unworn, and came up with the idea of the ladies in my family supporting me by wearing lawn chairs in the shape of hair on their heads.

And, they did.



From left to right: me, my sister, my son's girlfriend. My poor sister got the more matronly one but if it's any consolation, it's the one I wear the most as it's the lightest and least likely to hurt me.

We bewigged ladies all went out to dinner and had a great time discussing how much we wanted to rip them off our heads.

This is what it means to have cancer: The two girls took them off by dessert, scratching their heads and sighing with relief, natural hair shining in the spotlight of the restaurant. And I kept mine on to the bitter end because I didn't want to reveal my bare pate in that same glare.

And, I was even stuck putting the wigs in my purse.

Oh, but lest you think only women participated, here is my son:


Now I feel fully supported.

Friday, April 2, 2010

MUGA redux

The end of chemo didn't mean the end of tests and treatment.   Yesterday, I went in for my second MUGA test. I was a bit worried about them accessing my vein a day after chemo but the tech managed it.  It's getting hard and scarred though; sometimes it hurts to bend my elbow.  I don't know how addicts do it - but then again, I guess they have that painkiller thing going on.

To recap, the MUGA test measures the functioning of the left ventricle of your heart, which herceptin can damage. They take some of your blood, make you sit in the waiting room for 30 minutes while they do the Cordon Bleu thing and blend your blood with some radioactive isotopes.  Once your blood is the right mix and consistency, they pipe it back into your body.

The nuclear chef needs to do some more studying - it gave me a huge metallic taste on top of the metallic taste I get from chemo.   Imagine sucking on pennies and then putting a rusty screwdriver in your mouth, and you about have it.

They put you in the gamma scan machine for 20 minutes and you are done.  Results to be sent to the doctor in three days.

Three days for him - for me - I have no idea when I'll actually hear.  I get a slight break from the chemo infusion room - I don't have to go back until the 14th.   I may not find out until then but the one thing you learn in this process is how to wait for test results.

I'll just assume that everything is good until told it is not.

My next medical appointment is April 8.  That will make it full 9 days from one doctor's appointment to another.  That's a record since I was diagnosed and is a sign that I'm on the downside of the cancer recovery process.