Cancer Schmancer

It's the fifth of October, and I've officially had it with the color pink. 

Pink, in case you're an Eskimo and don't have either a tee vee or the ability to whip down to the grocery store to purchase some seal steaks, is the color of Breast Cancer Awareness.  October is, officially, Breast Cancer Awareness month.  Yesterday, we tuned in to watch the Bears beat the snot out of Detroit, and what were the husband and I treated to?  Pink gloves on the big, badass players, pink ribbons on their helmets, pink towels on the sidelines, pink bills on ball caps, etc.  The other day, while in Austin, I was asked at the checkout line (mind you this was also on the 29th of September.  Not October 1st.) at the grocery store if I wanted to donate money to breast cancer research.  When I went to my usual coffee date at the local Bou with Mr. H. yesterday, the entire store looked like a Pepto Bismol addict had puked all over.  The employees asked me if I wanted to buy a pound of "Amy's Blend," part of the proceeds of which would go to breast cancer research, and then they asked me if I would like to donate a pound to a woman who was going through treatment.  I politely said, 'no, thank you,' and then walked away.  One of the employees, who has been there a while and knew me when I was bald, shot a very understanding glance in my direction and shrugged. 

All of it makes me wonder if anyone cares if I, as an ovarian cancer survivor, live or die because I didn't get the trendy cancer. 

I'm of two minds about all of this.  I cannot deny that the various foundations who have worked hard to make breast cancer an issue, and to raise funds for research, have done a bang-up job.  They have done marvelously. (And bringing the NFL into it is a stroke of genius. Really.  Wow, people.  Nicely done.)  I do not deny this.  I genuinely laud their efforts.  They have bravely trod a path those of us involved in ovarian cancer fundraising want to follow.  Yet, when you see pink everywhere, one wonders if people realize that breast cancer is NOT the only cancer which affects women.  Nowadays, all of their efforts to put pink on the shelves and in every conceivable public location during the month of October and beyond, feels very much like they're bringing coals to Newcastle. 

Particularly to an ovarian cancer survivor.

I know it sounds bitchy, selfish and horribly, horribly wrong.  I can't help it, though.  A straight-up look at the statistics decrees that 1 in 8 women will be diagnosed with breast cancer, whereas only 1 in 71 will receive an ovarian cancer diagnosis.  That's a lot more women who are affected overall.  Yet, breast cancer, across all the stages, has an 89% five-year-survival rate, whereas ovarian cancer, across all the stages, has a 45% five-year-survival rate.  More women may ultimately get breast cancer, but fewer women die from it than those who contract ovarian cancer.  Ovarian cancer is the fifth leading cause of cancer deaths, and it's, hands down, the deadliest gynecologic cancer.  Yes, more women will die from breast cancer, but that's not because they don't have an early screening test (which breast cancer has in the form of mammograms) and it's not because they don't have effective treatments (tamoxifen, anyone?)---it's simply because more women are affected with breast cancer.  They run the table when it comes to the numbers---and I'm not denying it's a problem that needs working on---it's just simply that, well, how can there be room for the rest of us to raise awareness and money for a cure for a deadly cancer when they hog the limelight?

God, I'm hating myself for writing this.  Sour grapes extraordinare. But on I go. 

My young-survivors group puts together survivor swag bags, to hand out at our annual walk, and, this year, one of my fellow young survivors had the ignominous honor of ripping plastic off five hundred donated bottles of pink nail polish because the plastic was festooned with pink ribbons. The nail polish was, of course, originally sold as a breast cancer fundraiser---we simply got the leftovers.  You want to piss off an ovarian cancer suvivor?  Put something in a bag meant to be a treat for them, for surviving ovarian cancer, that has pink ribbons on it.  You would have thought someone at the company who donated the nail polish would have had a clue, but they didn't care. We, of course, couldn't say a word about it because it's hard enough to find items for the swag bags without spitting on very generous benefactor.  It sounds wrong to me (and others in my situation) when someone suggests, in a very well-meaning way, that because there is an ovarian cancer-breast cancer link (even if no one can define that link than there's an increased occurrence of the other when one is diagnosed with their primary cancer), we should hook our star to the breast cancer people.  It suggests that the only way ovarian cancer research can be relevant is to link it to breast cancer, as if it's not a problem in its own right.  I went to a luncheon sponsored by OCRF two weeks ago, where they provided us with a gynecologic-oncologist/researcher, so he could talk about the latest advancements in ovarian cancer research.  You want to know where he'd started his latest research program, which related to estrogen potentially feeding tumors?  Breast Cancer research about the use of tamoxifen, which suppresses estrogen and has been wildly successful in the treatment of breast cancer.  Yes, that's right: it's getting to the point where we have to feed off their research. Is it providing new insights? Yes, obviously it is.  But tamoxifen is not, he said repeatedly, likely ever going to be used in ovarian cancer treatments because the estrogen affect appears to be different in ovarian cancers than in breast cancer.  The overall fact is this: they're coming up with effective treatments; we have to feed off their research to learn more about ovarian cancer because we have very little knowledge about ovarian cancer's mechanisms in the first place.  We're decades behind.  When Dr. Academic told me he had no idea how the cancer got from my left ovary to my right, without affecting anything in between, it became apparent to me that for everything they do know, there are ten more things they don't.  The knowledge gap is staggering---and it shows up in the survival statistics.  

There is no early-screening test for ovarian cancer.  We simply have a list of symptoms to look out for, then you have to bully your doctor into ruling it out by banging the drum for three different tests.  And that's simply to rule it out.  It's better than nothing, but still, it's not exactly as definitive as a pap smear or a mammogram, and I say that with the full knowledge there are plenty of false-positives with either test.  At least there is a mechanism to find it early for cervical or breast cancer---that is not the case with ovarian.  We try to fundraise, and to raise awareness, but we're hampered by two problems.  First, we simply don't have as many survivors.  Which doesn't seem like a big deal, but it is---any progress we make in advocating for our cause is hampered by the fact some of the women involved die.  As Dr. Academic put it when describing the local ovarian cancer foundation: "They've got a longevity problem."  And, second, we run smack up against the breast cancer people.  What philanthropically-minded company wants to go teal, to raise money for ovarian cancer research, when going pink will make them more money?  And will improve their philanthropic profile by partnering with one of the largest causes?  Said companies have to choose: they cannot retool their packaging quickly enough to accomodate both causes, as they run up against one another in monthly timing. 

No one wants this to be a competition---but in reality, it is.  It's David v. Goliath, and no one really wants to take Goliath down.  But if we're ever to get anywhere significant, then we're going to have to go after them. 

And that's just simply sad.  It shouldn't have to be this way.

 

 

There's a bit of a moral brouhaha going on in New Ulm, Minnesota.  

The mother of 13-year-old Daniel Hauser testified Friday that she and her son would refuse to comply with any court order requiring the boy to resume chemotherapy for his cancer.

"Danny clearly made up his mind. He's not doing it,'' Colleen Hauser, of Sleepy Eye, Minn., testified on the opening day of a trial over whether a court should order the boy into medical treatment against the family's wishes.

Hauser, whose son was diagnosed in January with Hodgkin's lymphoma, said conventional treatments such as chemotherapy conflict with the family's religious beliefs. She said they prefer natural remedies such as herbs and vitamins.

Asked where she learned about the alternative healing techniques, Hauser said, "on the Internet.''

{...}The Hausers declined to speak to reporters after Friday's court session. But Dan Zwakman, a member of the Nemenhah religious group to which they belong, acted as the family spokesman. He argued that this is a case about religious freedom, noting that the group's motto is "our religion is our medicine."

The basic premise, he said, is "that we will do no harm. Chemotherapy is known to be dangerous. It's a killer."

On the witness stand, Daniel's mother showed little emotion as she testified in a soft voice about her son's ordeal.

She said that on the day Daniel had his chemotherapy in February, she felt pressured into signing the consent form, and never intended to agree to the full six treatments that his doctors at Children's Hospitals and Clinics had recommended.

"At that time, I was so emotionally distraught, I didn't know what I was doing," she said.

She said Daniel was furious when he realized he would be getting the treatment.

"Mom, I'm walking out of here," she said he told her, "and he almost did."

The boy refused to go back for the five additional treatments and his parents concurred, which ultimately triggered a child-endangerment petition filed by Brown County Attorney James Olson.{...}

 

The issues are thus: First, does a thirteen-year-old boy have the right to refuse cancer treatment?  Second, do his parents have the right to hide for cover under the rubric of religious freedom in their effort to back up his wishes, even if it would appear that their claim to said religious freedom seems more than a little specious?  And, third, does the refusal of the parents to give the child treatment constitute child endangerment, thus allowing the courts to come in and force the child to undergo treatment?

This is one of those instances when I'm really glad I'm not a judge.

I read about this on Saturday, showed the story to the husband, who patently declared himself to be solidly on the side of the parents.  After all, he said, they have a right to raise their child as they see fit.  If they don't want to put the kid through chemo, not only because of their supposed religious beliefs, but because he's their kid, they should have that right---even if it means they're incredibly stupid in doing so.  It was pretty simple to him. 

It's not so simple to me. 

I have every reason to believe that this woman is inherently misguided in her belief that nutrition and vitamins that she read about on the internet will keep her kid's cancer in check, or, miraculously, will cure it.  She seems to think this is an alternative treatment to chemo.  Furthermore, she doesn't apparently believe that tumors can gro and that radiological technology will document said growth. She and my beloved Cake Eater Father should get together and have a chat, because he holds many of the same views she does---although he doesn't subscribe to a Native American group. 

I regularly get chewed out by my Dad for being "stupid," because I refuse to believe that any of the quacks he follows on the World Wide Web have any credibility or even know what they're talking about.  It doesn't help their credibility in my mind that all of these doctors have their own herbal supplements for sale and take Visa.  At this stage of the game, his back is really up, my devoted Cake Eater readers, because he just wants me to not suffer, and he truly believes that modern medicine is inflicting said suffering upon me.  He's got a point, because everything I deal with now is a result of modern medicine's intrusions into my body.  That's a fair complaint.  For the record, I'm not against using a natural source as a cure for anything.

Yet...

I just want some independent proof---and the more independent sources the better---that something works, rather than just said Visa-accepting-quacks' word (and the iffy studies they quote in their defense) that it does.  Dad thinks I'm an idiot because I still go to Dr. Academic and my other doctors when he believes what they have done is to cause more harm than good.  He doesn't understand why I still give them my trust.  Even though he has, understandably, forgotten quite a bit about the specifics of what I've gone through (it's hard for me to remember all of it, so I don't blame him)---and in one memorable instance, has selectively chosen not to remember something rather vital---he still believes he knows better.  I'm not saying he would have me ditch traditional medicine altogether, although he apparently doesn't put much stock in it anymore.  I am saying, however, he doesn't want me to apply the same standards I would apply to modern medicine's treatments (i.e. studies with good sample sizes and math backing them up, and the more of them, the better) to the ones he comes up with.  He just wants me to take his word for it.  That's the essence of the rub. 

I'm in a tough position with my father, because I know he's just doing it because he cares. Really and truly. Yet, every now and again, I hear about how dumb I'm being, how I'm such a know-it-all, etc.  He just called me "Carnac" the other day, referring to my know-it-all status. Sigh.  It's these times when I really have to bite my tongue.  It's kind of hard to defend your thinking when it's your father who's calling you an idiot.  It kind of rules out the harsher, argument-ender tactics, because otherwise I'll hear from my mom about how mean I'm being, and that I really don't need.

I'm fortunate, however, in that I am over the age of majority and don't have to follow his dictates simply because he's my father.  I am in charge of my health care, for better or worse, and any mistakes I might make are mine.  I'm an adult.  I am in charge of my life.  Daniel Hauser, however, is not in charge of his life.  His parents are.  Should they be allowed, in essence, to allow their son to die because they don't want to put in Brian Urlacher as a linebacker against his disease, but would rather have a member of the Lollipop League as his defenseman?  Social Darwinism is one thing, yet...this is a boy we're talking about. A thirteen-year-old boy, who could, conceivably, have a long life ahead of him, where he would be a productive member of society if he undergoes treatment and is able to leave his cancer behind him. 

Can you really sacrifice his life at the altar of parental rights?  If these parents were abusing him with sticks, stones, and the occasional crobar, society would overwhelmingly say, yes, get the kid out of the home.  Take him away from his parents, who obviously don't have any parental qualities at all.  Yet.  Because we're talking about chemo here, which everyone can agree is some seriously nasty medicine, they're supposedly being good parents because they're refusing to put their son through that hell, no matter how beneficial it may be? I'm not so sure that holds up.  Neither am I sure that the religious argument holds up either, because these beliefs appear to me to be adopted for legal cover.  I don't know this kid's reasoning for avoiding chemo.  The mother claims the treatments violate their religious beliefs, but at no point in that article was it mentioned that the kid believed the same and that was what was prompting him to refuse treatment.  That was simply implied.  I'm not so sure I buy it.

Again, can you sacrifice his life at the altar of parental rights?  Because that essentially what this boils down to. 

I don't know.  It just doesn't seem right, in a very itchy sort of way. I understand that parents have rights.  I approve of the notion that parents should raise their children, with the least amount of intrusion from the state as possible.  But shouldn't children be protected from stupidity---even if its their own, or that of their parents? This is clearly not a case of "let them touch the stove and they'll learn how to avoid getting burned in the future."  This kid, clearly, doesn't have that kind of time to learn his lesson. If he had already undergone treatments, and they weren't proving effective, and he wanted to refuse additional treatments, I would say, yes, the kid has a right not to suffer anymore.  He would have credibility with me, a fellow chemo-sufferer, then, despite his age.  At that point, he would be more familiar with his body, and what he did and did not want to endure for the sake of living a little longer. But this kid? He doesn't want to even try.  One can infer that, from what his oncologist said on the stand, Daniel doesn't fully understand what he's doing, or even what he's feeling, because he's attributing his sickness to chemo, rather than his illness, which is not the case.   

What does this all mean?  Hell if I know. That's why I said I was glad I wasn't the judge.  I sincerely hope the judge can convince the parents that they're being idiots; that the kid is being an idiot, without having to force anyone to do anything.  Sadly, however, I think the judge will probably order the kid to undergo treatment and will say something to the effect of, "When you're eighteen, you can come back and yell at me then." 

Courtesy of Mr. H., who tipped me off, I have for you, my devoted Cake Eater readers, an interesting opportunity. If you've ever wondered who Dr. Academic really is, well, here's your chance to find out.  I still will not publish his name here (and I expect you, my devoted Cake Eater readers, to do the same by keeping his name out of the comments) because I don't think it's fair to him.  He's been exceedingly good to me, hence I don't want to embarrass him by using his name (and posting about the quirkier aspects of his personality) in a place where Googlers can find him.  But I see no harm in posting a video of a news piece he was interviewed for which aired last night. 

 

Heh.  The only thing that's missing is him plugging away on the white board in the background. 

You did notice the white board, right?

Well, this ought to be interesting.  Because that is probably what the husband is thinking, as he toils across the office from me .

I’m not rambling to myself about the latest and greatest outrage I can find with the help of my mouse, my DSL Internet connection, and my browser.  Instead, I’m dictating this with the help of a speech recognition program built into XP, into Word, so I can cut and paste this into the blogging window, so you all can read it and see how pathetic I really and truly am.  Why am I using a speech recognition program?  Well… it’s because my neuropathies, or nerve damage from the chemotherapy, have kicked in with a vengeance.  So much so that typing is out of the question for the time being, as the neuropathies are in something of a days-long flare mode. 

This sucks, to put it mildly.

I have no idea why they are so bad, this far out from chemo, after a summer where they disappeared.  The cold makes them worse, obviously, but I've noticed the barometric pressure switches, which seem to be happening in a dramatic fashion with alarming regularity lately, have something to do with it.   After suffering through them last winter, they pretty much disappeared over the summer.  As in I, literally, had no problems with them at all until about the beginning of November, and even then they were very mild in comparison to what they were last winter.  However, Christmas week they came back, and they were worse than they’ve ever been .  Suddenly now I seem to have developed arthritis along with the shooting pains the neuropathies usually caused .  My hands ache and are swollen.  The shooting pains go up into my arms now. Also,  I have these lovely little patches on The skin of my hands where, out of nowhere, it suddenly feels like I’ve splashed scalding water on my hand, and now have a third degree burn that lasts for about a minute or so and then, miraculously, disappears.  Good times, no?  And, to explain the speech recognition software, the tips of my fingers are incredibly tender and it’s painful to type, and to do so generally encourages the shooting pains to really get going.  So I’m going to avoid typing as much as I can for the time being, and so I can continue blogging somewhat, the husband rigged this up for me.

Dr. Academic is sending me to a neurologist, in search of some understanding as to why they’re so crappy because he’s clueless and his prescription pad is in really helping me this time. We're also curious if this means the damage the Taxol caused to my nerves is permanent.  I have that appointment on Wednesday and it should be interesting to hear what this neurologist has to say. I was chatting with my dear friend, The Doctor, who also happens to be a neuropsychologist, and she has worked with this neurologist and had lots of good things to say about him. Hopefully he’ll be able to provide some answers, because as of right now everyone---and I mean everyone---is clueless. I am not normal.( yeah, yeah, keep your comments to yourself because I already know what you're are going to say, and it’s not that original.) I shouldn’t be having problems with the neuropathies right now. Well, let me correct that: I can have them, it would be normal to have them at this stage of the game, but they shouldn’t be so bad that my hands would swell up, that I wouldn’t be able to type, that the pain would be worse now than it ever has been. None of it makes sense. Hence, it’s time to go to the nerve specialist. I doubt, given that there’s generally not much they can do about these things to begin with, he’ll have any helpful suggestions, other than to win the lottery and move to a warmer climate, but I’ll go and hear him out anyway, just in case.

Unfortunately, training the speech recognition software hasn’t been a lot of fun.  You’ll have undoubtedly  noticed that there are few mistakes in this little screed, and that’s because the software and I are still getting to know one another, so bear with me while I train it.  Furthermore, I’m trying to get it to swear for me and it doesn’t seem to want to work. Fox. You see “fox” isn’t supposed to be fox; it’s supposed to be something a wee bit dirtier. I think perhaps you might understand what I’m saying, or writing as the case may be, even though it doesn’t feel like I’m technically “writing” right now, but am rather rambling to myself, in the cold office,  in the middle of the night, with a lukewarm cup of tea at my side, and am wondering if I have, officially, gone nuts. So perhaps you’ll forgive me for trying to have some fun with this, eh, my devoted take your readers?

Ship. She had. Ship. Ship. Fox. Fox. Fox. Talk fox fox five fox fox buck Falk Sox Sox Sox. Koch sector mother Fokker.

God damn Microsoft. Oh sure, you can say “god damn” in Microsoft-ese, but if you want to drop an F. bomb forget about it.

Anyway, I shall try to soldier on, but don’t expect any great posts over the next couple of days, because this dictation thing is freaking weird. It’s one thing to be screedy when you’re simply typing away, but then to have to listen to yourself being screedy? Well, that’s another thing entirely, and I think it’ll take some getting used to, but hopefully I won’t have to.

 

Sheila, in yet another excerpt from her (wonderfully) overstuffed bookshelves, covers Rosalind Russell's autobiography today.

Sadly, Roz died of breast cancer.  Her autobiography was published after her death, and her husband wrote the prologue to the book. :

After she died I found a petition she had tucked away in her prayer book. It said in part, "Keep my mind free from the recital of endless details; give me wings to get to the point. Seal my lips on aches and pains. They are increasing, and love of rehearsing them is becoming sweeter as the years go by."

While  I doubt she meant for anyone to read that, that struck me as pretty damn good advice for those of us who have to deal with health issues. 

People often wonder how they should treat those who are very ill, or are battling with a disease.  They worry a lot about making a wrong move, bringing up a delicate subject, or offending their friend/loved one to the point where the relationship is irretrevably broken.  I think people worry too much about this.  All anyone needs to know when chatting with someone who is ill is not to ignore the big, fat, pink elephant that's sitting in the middle of the living room, but to simply treat their ill friend/loved one like they did before they were sick.  That's all I wanted. I wanted Mr. H., when he came to visit me in the hospital, to joke and chat, and not see me be unable to eat any food, or take water, or to fall asleep in midsentence.  I was so pleased when he was able to help me walk around the hospital floor.  I had to get out of bed, to move, to heal, it was part of the bargain, and I needed him and the husband to help hold me up as I walked to the nurse's station and back.  I was pleased I was able to be normal in front of him, even though the situation was patently abnormal.  

Yet, on the flipside, ill people have to remind themselves, often, that most people just don't want to hear about it, particularly if you're of the chatty variety, and aren't possessed of a John Wayne-like sense of stoicism, like myself.   You may want to talk, but they probably don't want to listen---well, not after the first few times, anyway.  You learn that, even though you may want to answer honestly when a friend asks you how you're doing, you'll simply say, "I'm fine," even if you aren't, to enable them to work around the big, fat, pink elephant---your illness---in the room.  If you want them to treat you normally, you will enable your friends and family to do that.  It's the classy thing to do, and Rosalind Russell knew that it was also a hard thing to do: she prayed for help in doing it.  You're focused on the maladies and the pain they've caused you and the struggle sometimes becomes omnipresent in your head, but your friends and your family members---and, most importantly, your spouse---don't need to hear all about it.  Rosalind, bless her soul, undoubtedly, was seeking a bit of normality, but I'm sure was also trying to make the burden lighter for her much loved husband, who had to see her deteriorate from the lovely, vibrant woman she was.

Yet, everyone handles finding the normality differently.  For some people it means ignoring the obvious.  For others, it means taking off the kid gloves.  Take Gene Wilder and Gilda Radner, for instance.  After her death, Wilder later recounted that she was a pretty whiny patient, that something was always wrong, that she was terribly spoiled, and could be petulant and unfair at times.  He didn't want to argue with her because she was sick, and he knew it was the illness that was causing her to be this way, but, after letting it slide a few times, he decided he wasn't going to let her get away with it, and he blew up at her.  She thanked him for it.  She said, something like,  'See?  I must not be dying.  You wouldn't argue with me if you thought I was dying.'

Besides, being sick---you know, after the inital drama of the diagnosis---is boring.  It's a life sucking drudge of an experience.  Why bore other people with it?   If they're leading productive, happy lives, let them get on with it, instead of dragging them down.  While they want to be a friend to you, to hear you, you have to be just as much of a friend to them, by shutting the hell up.  

I'm a little late with this, but did you know that the month of September has officially been designated by President Bush as Ovarian Cancer Awareness Month?

Yep. 

A Poclamation by the President of the United States of America

During National Ovarian Cancer Awareness Month, we remember those whose lives have been affected by this deadly disease, and we underscore our commitment to battling ovarian cancer for the sake of women around the world.

Each year, thousands of American women are diagnosed with ovarian cancer. Many will lose their lives to this disease. Because ovarian cancer is often diagnosed at an advanced stage, it is vital for women to make regular visits to their doctors for screenings and to discuss risk factors and warning signs. Early detection is the best way to help doctors diagnose cancer before it has a chance to spread. It also makes treatment more effective and increases the chances for survival. I encourage all women to learn more about preventive measures and screening options that may help to save their lives.

America leads the world in medical research, and my Administration remains dedicated to the fight against ovarian cancer. I signed the "Gynecologic Cancer Education and Awareness Act of 2005," or "Johanna's Law," that helps to raise awareness among women and health care providers about female reproductive cancers. Additionally, the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention are conducting important research to help make the innovative advances we need in order to eradicate this disease. NIH's Cancer Genome Atlas is also helping researchers gain a greater understanding of the genetic sources of cancer. Together, we will continue building on our progress until there is a cure for cancer.

As we observe National Ovarian Cancer Awareness Month, we honor those who have fought this disease. We also recognize the compassionate caregivers, doctors, and researchers who are dedicated to preventing, detecting, and treating ovarian cancer.

NOW, THEREFORE, I, GEORGE W. BUSH, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2008 as National Ovarian Cancer Awareness Month. I call upon government officials, businesses, communities, health care professionals, educators, volunteers, and the people of the United States to continue our Nation's strong commitment to preventing and treating ovarian cancer.

IN WITNESS WHEREOF, I have hereunto set my hand this twenty-sixth day of August, in the year of our Lord two thousand eight, and of the Independence of the United States of America the two hundred and thirty-third.

GEORGE W. BUSH

Cool, eh? 

Of course we're competing with Prostate Cancer Awareness Month, and National Alcohol and Drug Addiction Month, but you've gotta take it where you can get it, right?

Anyhoo...just to let you know, if you're one of my devoted Twin Citian Cake Eater Readers, the Minnesota Ovarian Cancer Alliance, of which I am a member and a volunteer, is sponsoring its Ninth Annual SILENT NO MORE RUN/WALK this coming Saturday, September 13th at Rosland Park right here in Cake Eater Land!  Woohoo!  It's $25 to walk, you'll probably get a tee shirt, and it's only a 2K.  Very, very easy to complete for all of you couch potatoes.  The proceeds from the walk go toward funding ovarian cancer research.   And, yes, I will be there, so if you want to show up, let me know in advance and you can walk with the husband, Mr. H. and myself. 

And, believe you me, my devoted Cake Eater readers, we need every little dime we can lay our paws on, because the government isn't doing shit for ovarian cancer research.  They spend about $3000 for every death attributable to breast cancer on breast cancer research; when it comes to ovarian cancer, we get about $600 per death.  Not very fair, is it, particuarly when you know that the five year survival rate for breast cancer, across all the stages of the disease, is 89%, and the five year survival rate, across all the stages, for ovarian cancer is 45%.  Yeah, there are fewer of us diagnosed, but more of us die.  Komen has done a fantastic job raising awareness and funds for breast cancer research, and part of that is about raising these issues on Capitol Hill.  They've got a fantastic lobbying effort up there, and it's really paid off, but, part of the reason for their success is that while many more women are affected by breast cancer---1 in 8---they have many more survivors to bang the drum for research money.  Ovarian cancer may only affect 1in 57---but we don't have as many survivors to go up to Capitol Hill to lobby for money for research----not when roughly half of the women affected will die within five years of being diagnosed.

Now, you, my devoted Cake Eater readers, know, with certain exceptions, I am not the biggest charity advocate out there.  I am NOT a joiner; that kind of stuff is for other people, not me.  Dr. Academic talked to me, very early in my treatment, about getting involved with MOCA because, as he put it, "They've got something of a longevity problem."  Meaning, by the time women really got involved and started advocating, they recurred and ultimately died of the disease.  This doesn't necessarily help with forward progress, ya dig?  But, for the most part, I wasn't game.  I didn't want to get involved.  Couldn't someone else do it?  I hemmed and hawed, legitimately claimed illness, but once I got better, I succumbed,  basically, because I felt I didn't have a choice in the matter.  I LIVED.  THEY DIDN'T.  If I was the one who cacked because of this disease (which fortunately doesn't seem to be the case) wouldn't I want someone banging on for research money to make sure no one else had to go through the same hell I did?  

I'm one of the lucky ones who is going to live, long and well, because they caught my cancer early.  Ovarian cancer is VERY treatable if it's found in the early stages.  The problem is, though, we have no early screening test, something along the lines of a mammogram or a pap smear, and  the symptoms are so vague most OB-GYNs are so dismissive of them, that women go, quite literally, for years without it being diagnosed.  I've heard stories of women who went undiagnosed for years and when it finally was diagnosed, they had a tumor the size of a football in their pelvic region, and the cancer had spread to other organs and other regions, which, I can tell you, is not very good.  When ovarian cancer gets to Stage III or Stage IV, which is when most women are diagnosed, all they can pretty much do is give you salvage chemo to make you live longer---your hopes for a cure are GONE.  I met one woman when I was going through treatment who had been receiving chemo for ovarian cancer for two and a half years straight---it was the only thing keeping the cancer from eating her alive. 

So, if you're so inclined to right this wrong, to help us find an early screening test which could be administered during a woman's annual exam, like a pap smear, so fewer women will DIE from this bastard of a disease, might I suggest that you go here, or here, or here and donate some cash to help out? 

Or if you'd like some new lipstick, L'Oreal has its "Hope" line out, where $2.00 of the every tube of Color Riche lipstick will go to the Ovarian Cancer Research Fund. (And, I have to tell you, the colors are actually REALLY great, because I got a tube this weekend, and it's AWESOME!)  Or, If you're in the market for a new washer and dryer, might I suggest that Turquoise Sky  will look fabulous in your laundry room---and Electrolux will donate $200 with every purchase to OCRF?  

However you choose to donate, thank you.  If you choose to be a cheapskate, well, I can't stop you, but let me ask you this: would you like one of the women you love to look as crappy as this? 

I didn't think so.  Cough up early and often. 

I went to an imaging office this morning and had my very first mammogram. 

WooT!

 

 

What's the problem here, ladies?  It was quick.  It was relatively painless.  (My breasts are about as sore as they used to be during my period...when I had a period) and the images popped up on the screen, toute suite, and the tech told me Dr. Cindy Lou Who should have the results by the end of the day.  Try getting CT or Pet Scan results by the end of the day.  HA!  That's a laugh.  You're lucky if you get them by the end of the week.

What is with all the whining about mammograms, women?

This was NOTHING, yet I was braced for pain galore when I went in because my friends had warned me that it was the equivalent of having your b00b smushed by a falling garage door.  It wasn't.  It was easy peasy.  Yes, my breasts went in directions that even I was suprised they could go, but the invconvenience and discomfort was momentary.  This is FABULOUS technology, ladies.  Trust me on this one.  That they could FIND CANCER via a scan is FANTASTIC, and sure as hell beats being sliced up the middle and having your innards removed and/or poked for hours on end, like when I was diagnosed with ovarian cancer.  IT COULD BE MUCH WORSE.  Trust me on this one. 

Stop whining, embrace the technology, and take an advil if your boobs hurt afterwards.

I was so sorry to hear that Randy Pausch died yesterday.  I sincerely hope he didn't suffer during his final days, and was at least able to be comfortable, but, given his philosophy of life, he probably would have said something to the effect that nothing's easy in life, why should dying be any different?

Everyone and their mother has posted his last lecture, and I shall do the same.   Because if you haven't watched it, you really should.  It will be one of the best, most fulfilling hours you'll spend in your life. 

You can find the lecture here, because, as of right now, I have no clue as to how to embed video.  {insert hanging head in shame here}

Saw Dr. Academic yesterday and we have good news. CANCER FREE, BABY The biopsy came back negative for cancer, and my CA-125 that I had done last week as well came back at 10. I have not recurred and all is well here in Cake Eater Land. Well, except for the pain thingy, for which Dr. Academic has prescribed Celebrex, which my insurance company is currently balking at shelling out for. It'll get sorted. It's just going to take some time. Sigh. Thanks for all the prayers and well wishes, my devoted Cake Eater readers. The husband and I are in your debt.

So, one year ago today, I went bald. On said night, after we'd finished dinner, the husband made me undress and took me into the bathtub. While I sat there, on the edge of the tub, naked as a jaybird, he buzzed me with the clippers, taking any and all excess length off my head, of which, it must be said, there wasn't much.So, one year ago today, I went bald. On said night, after we'd finished dinner, the husband made me undress and took me into the bathtub. While I sat there, on the edge of the tub, naked as a jaybird, he buzzed me with the clippers, taking any and all excess length off my head, of which, it must be said, there wasn't much. After a quickie shower, which washed my hair down the drain and off my neck, I got dressed again, and he then sat me down, on one of the dining room chairs he'd placed in front of the kitchen sink, lathered up my head with shaving cream and took a razor to whatever was left. When he was finished (it took a while, because my scalp had never been shaved before and it proved somewhat reticent. Also, the husband, new to the task of shaving heads, didn't want to cut me, as well), we went into the bathroom to take a peek in the mirror, and that's when I started to cry in the husband's arms. I felt like Samson---completely vulnerable to attack. After a while, I wiped my eyes, put on the hat my sister had knit for me, and went out to the living room to be distracted by the tee vee. The husband, upset because I was upset, again made the offer to cut all of his hair off, so I wouldn't feel alone. I refused, mainly because I wanted to be able to play with his hair whenever I wanted to, and extracted that promise from him. (Bless him, he kept that promise, too.) While I was entirely horrified that I'd lost my crowning glory, I couldn't stop myself from feeling up my smooth head. It was weird, and it wasn't something I ever got over doing the five months I was without hair. If I was just sitting around, watching tee vee, it was guaranteed that that's where my hand was, feeling up my skull. It was normal for me to do this, I suppose, considering how much I played with my hair, when I had hair. I'd just substituted running my hand along my scalp, feeling the bone, trying to memorize all the bumps and curves, for making braids and twirling the locks. Also, as it turns out, going bald brought back a second grade memory that I'd completely forgotten: one day, in the middle of winter, coming home from school, I decided to take a "shortcut" between two garages and sliced open the top of my head on a low hanging gutter. At the time, I hadn't realized that I'd done anything to myself, but by the time I'd reached home, I realized there was all this red stuff on my hooded green ski jacket. I couldn't figure out what it was. My memories of the event are foggy, but I must have freaked the ever living hell out of my mother when I walked in the back door. As it turns out, I'd cut open my scalp, through the hood of my coat, and had bled like a stuck pig from the inch-long gash. After a phone call to the doctor, the decision to not get stitches was cemented, because it wasn't bad enough to merit them, I was cleaned up and I went into the family room to watch cartoons. I remember eating an awful lot for dinner that evening, but I was fine overall, and the incident was soon forgotten. Until I went bald, that is. While he was shaving my head, the husband wanted to know why I had a small scar on my scalp, and I was puzzled for a few moments until I remembered this incident. I was amazed and had to tell my mother and sister all about it. Ironically, a few weeks later, my niece, Maggie, cut open her head while she was horsing around at one of her brothers' baseball games, and despite all the blood (because, as I found out from a nurse friend that scalp wounds bleed like crazy) everyone comforted my sister, saying at least it was under her hair, so no one would notice. Christi told me she'd laughed and said, "Well, you never know about that. My sister just lost her hair from chemo, and she found..." About every week and a half, the husband would get to shave me again, because white fuzz grew in small amounts on my head and, when it got to a certain length, it would start to catch on the scarves I wore. He got pretty good at this, and had it down to a routine before long. Every time a chair from the dining room would make it's way in front of the kitchen sink, where the husband would lather me up and would go to town, while I tried to watch the little tee vee we have installed in there without the benefit of my glasses. As you might have guessed, I wound up listening more than watching. Fortunately, in the middle of August, one month after my last Taxol treatment, the hair started to grow back. It was earlier than I'd thought it would be, but it was just fine with me. One year later, here's the progress report:

Yeah, I fully realize I look like a complete and utter spaz in this picture. All I can say is you try to take a decent picture of yourself, by yourself and see what you can come up with. But, let's face it, I'm a complete and utter spaz...with hair. Which is good. Yes, it came back in curly. That's par for the course, but it's not any curlier than what it was beforehand. Thank Goodness it didn't come back in as a fro. What I wasn't expecting is that the texture is now completely different. My hair used to be somewhat coarse, now it's fine. Unfortunately, that doesn't help in the frizz department, because it still erupts whenever it's wet. Sigh. I was hoping God was going to throw me a bone on this one, alas, however, He apparently has better things to do with his time than focus on my battle with frizz. I hope I never have to go bald again because of chemo, because that would mean baaaaaad things regarding my future, but if it happens, I know I'll live. I won't be happy about it, but I doubt I'd be as traumatized as I was last time. And, if it happens, well, I won't have to spend a load of money on scarves and hats because I have a whole drawer full of them. If I had one thing to do over, I would get a wig. Not for vanity purposes, but simply because there were days when I would have enjoyed some privacy regarding my condition. That's all. A wig will only do so much to make you look normal if you already look ill. I just would have appreciated a few days where everyone wasn't privy to my business and a wig would have enabled that. So, that's the hair update. I suspect that this might be the last one, my devoted Cake Eater readers. For which, I'm sure, more than a few of you might be grateful beyond all belief.