But What About OVCA?

I have read, to almost the point of ad nauseam, about Angelina Jolie’s decision to have a prophylactic mastectomy because of her genetic risk for breast cancer.  Now, before all everyone who has breast cancer, knows someone with breast cancer or has the BRCA gene and has undergone the same procedure decides to send me hate mail, unfriend my mother or send a virus to my computer, I am thrilled that there is genetic testing available for breast cancer and that women have the choice to take matters into their own hands.  Knowledge is power and this is immensely important when dealing with issues of life and death.  Breast cancer, like all cancer, is a beast and takes far too many beloved women (and men) before their time.  I pray for the day when cancer is eradicated in all its forms.

The number of women diagnosed with breast cancer is staggering.  According to the American Cancer Society 232,340 women will be diagnosed with breast cancer this year and 39,620 will die from it – a 17% mortality rate.  When people find out I’ve had cancer, they assume I had breast cancer.  They talk to me about tamoxofen, radiation, neulasta and chest CT’s.  I smile and tell them I am in remission for ovarian cancer.  That’s when the eyes get big, the jaw drops and you can see the words scrolling across their brain, “That’s the one you DIE from!” then excuse themselves from the conversation after telling me how sorry they are.

The number of women diagnosed with ovarian cancer pales in comparison.  Each year, approximately 22,000 women are diagnosed with the disease and 15,700 will die.  That’s a staggering 74%!  Yet no one talks about it.  Maybe if we ignore it, it will go away.  Sorry folks, it’s not going to happen.

After reflecting on this for 7 months, I have come realize that one of the reasons breast cancer gets “better press” (for lack of a more appropriate term) is that breasts define a woman.  Think about it.  Breasts are used to feed babies as well as define our shape.  Lots of men are breast men and TV does nothing to mitigate that stereotype.  If you’ve ever seen me, you know that I am well endowed, so I speak from experience.

A mastectomy changes your shape, even if you have reconstructive surgery.  You can be flatter, perkier, or bigger.  Or you can choose to join the ranks of “flat and fabulous” as a good friend of mine has.  The cancer is always a reminder that you are somehow different than you were before.

On the flip side, ovarian cancer also takes away what makes you a woman – far more than breast cancer.  After all, men have breasts (and do get breast cancer), but they do not have the rest of the plumbing.  When ovarian cancer strikes, it forces a woman to have the surgical removal of everything that makes her female – her ovaries and uterus.  Ovaries produce the eggs needed to create life and the uterus carries that new life until it’s able to live outside the womb.  They also stimulate the production of the female hormones.

A hysterectomy is not like menopause.  Menopause is a gradual, natural process that generally occurs after childbearing years and has some “delightful” symptoms.  A hysterectomy is a drastic thrust into menopause.  Suddenly hormone production is shut down and life changes.  In addition to the major surgery (most hysterectomies for ovarian cancer are traditional with a nasty scar that divides your abdomen in two parts), the chemotherapy throws whatever is left of your sensibilities is thrown out the window.  Basically, you get immediate hot flashes and are crabby all the time.  And the younger you are, the more devastating it is.  Losing your breasts is awful, but losing your ability or choice to have children can be earth shattering.

It’s only been in the last few weeks that I finally realized that there will be no more periods.  While I was never able to have biological children, I did have two miscarriages.  Somewhere in the deep, dark recesses of my mind, I think I held out hope that maybe, just maybe, God would bless me with a biological child.  Now I am finally mourning the fact that I was never able to experience the joy of holding my own newborn.  While the fact that two women I’ve never met have blessed me beyond my wildest dreams with two amazing sons, there was always a part of me that wanted the experience of carrying a baby.  At 48, I would be doing that anyway, even if I’d never had cancer.  I cannot imagine what a 25-35 year old woman would be feeling in my shoes.  The choice was just pulled out from under them.

There is no genetic test for OVCA.  Actually, there’s really no definitive test for OVCA.  We do have the tumor marker test, CA-125, but it’s notoriously unreliable.  We can get CT scans, but only after OVCA has been misdiagnosed as endometriosis, IBS, bladder dysfunction, or any of a number of other conditions.  And while there is only a small percentage of women who get breast cancer actually carry the BRCA gene mutations, there is no genetic test for OVCA.  Mammograms may not be completely reliable as a screening test, but women are encouraged to do self exams which do detect a number of cases.  Unless I’ve missed some research, you can’t do a self exam for OVCA.  Pap smears detect cervical cancer, NOT ovarian cancer.  This is one of the reasons that ovarian cancer is dubbed “The Silent Killer.”  Most women aren’t diagnosed until they reach stage 3 or stage 4 making chemotherapy more grueling, recurrence more common and drastically reducing the chances of actually making it to remission, let alone the magic 5 year “cured” anniversary.

BRCA has a great PR machine that generates an amazing amount of money for research.  Not only does the American Cancer Society do research into breast cancer, the Komen Foundation, Avon and a host of other companies throw astronomical sums of money at researchers.  Let’s face it, any disease that can get grown men who chase a piece of pigskin on a large field (talking football here folks) to wear pink for an ENTIRE month, has got one hell of a lobby.  A friend who survived breast cancer told me shortly after my diagnosis that sometimes she feels more like a “commodity” than a survivor.  Nevertheless, breast cancer has a lot of money for research, patient education and support.  The entire month of October is pink.  A local TV station here is pink the 19th of every month.

Right after my diagnosis, my  mom called the American Cancer Society to get information about ovarian cancer.  She was told they didn’t have any because they didn’t devote their resources to a cancer that affected so few women.  Yeah, I get it.  22,000 pales in comparison to 232,000, but tell that to the 22,000 women who will get that diagnosis this year.  Tell that to the families of the 15,000 women who will die this year.  I just to love the color pink.  I had lots of clothes in my closet that were pink.  I tossed them all, except for one T-shirt I keep in honor of my friend Cathy who has stood by me throughout my entire journey (she’s a BRCA carrier and survivor).  I now buy clothes that are teal.  Teal is the color for ovarian, uterine and cervical cancer.  Teal is beautiful and I also look good in it.  I guess I’ll have to settle for the Miami Dolphins and the Seattle Seahawks to wear teal and just pretend they are wearing it for ovarian cancer.  My friend Cathy wears teal to honor my fight.  Actually teal and pink look good together.  There are a couple of groups that are pushing to join pink and teal.  Doubt it will happen though, since we don’t have the PR machine.

So I fight for recognition by volunteering for groups like the National Ovarian Cancer Coalition and the Ovarian Cancer National Alliance.  I will be walking in the local ovarian cancer walk in September to raise funds for research (my oncologist gets funding from this walk to continue his research).  I post things on Facebook.  I talk to groups.  I pray for a cure.  I do anything I can for my sisters in teal.  We are a small but mighty group.  We are fighters.  And we continue to be overshadowed by our sisters in pink.

Angelina, I am thrilled you brought BRCA testing into the open.  I hope it helps women get testing and saves lives.  But please don’t forget about your sisters in teal who are fighting just as hard, if not harder, than you are.  We’re here fighting and don’t want to be forgotten.

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Changes, They Are Comin’

I am amazed at how much my body has changed in the last month.  I have hair on my head, eyebrows and eyelashes, and have even begun the unpleasant task of shaving once again.  I no longer look like a pale version of myself.  I actually look like a real person!  It’s not disconcerting to look in the mirror any longer.

Of course, now that chemo is over and I’m in remission my doctors required me to make changes.  Sometimes, though, they are in conflict with each other.  My oncologist has strict dietary requirements for me.  Absolutely no artificial sweeteners of any kind, no soy (to the extent possible) and hormone free dairy and meat.  After pricing organic meat, I decided that becoming an ovo-lacto vegetarian looks pretty good.  I have been buying organic eggs for a year now and with the exception of cheese (which is just way too expensive for me to buy completely organic), I have been pretty successful.  Fortunately, my oldest son has never been much of a carnivore so he’s good with the changes.  My hubby is a vegetable lover, but has requested meat on the weekends to meet his carnivorous needs.  My youngest is the pickiest eater on Earth so it doesn’t really matter what we do as long as he can eat a fish stick, hot dog or pizza.

Yesterday, my vascular surgeon started me on Coumadin and started weaning me off my shots I was taking to thin my blood (yippee!).  However, leafy greens have to be limited when you take Coumadin.  Now I LOVE spinach, lettuce and Swiss chard. Limiting me to two servings a day is tough since I eat salad almost every day.  While she has said that she will tweak my meds to meet my diet, a vegetarian diet makes it harder to manage Coumadin.  Thus my dilemma.  I am hoping that I am one of those people that their body just adapts to the Coumadin quickly and I can get on with life.

Then there’s the whole weight loss thing.  My mom once told me that losing weight after menopause is hard, VERY HARD.  Now I know that my mom is nearly always right, and this time is no exception.  My hope is that a plant based diet will make it a bit easier to lose. And I joined sparkpeople to help me on my journey.  As my neuropathy in my feet levels out, I am hoping that I can exercise more to boost my metabolism.  So my oncologist tells me to lose weight and if the other symptoms of menopause get too bad, he’ll consider putting me on progesterone, which has the side effect of weight gain.  I wish this guy would make up his mind.  You can’t have it both ways.

I’ve changed how I look at things.  Things I used to sweat don’t phase me much anymore.  Yes, I still worry about my family and paying the bills, but if the laundry doesn’t get done or if I don’t get the dishwasher unloaded before 9AM, it’s just not a big deal.  I take more time to do things I enjoy.  I have developed a real love/hate relationship with my computer.  It’s how I earn a living, but I realize what a time waster it can be.  I try to journal more, write more articles and hope to continue this blog.  They seem more beneficial to life in general than playing games on Facebook.

The biggest change I’ve noticed is how I face life.  Remission is, by far, so much harder than having cancer.  When you have cancer, you see the enemy and feel like crap because you are actively fighting it.  When you’re in remission, you find that you begin to dread those labs and scans even though they are much less frequent.  The Beast lurks in the background waiting for its chance to strike again.  The oncologist tells you to live your life, but the life you had is gone.  You have this new life and cancer will always be a part of it.  This is tough for people who have never had cancer to “get” and that’s okay.  I’m thankful for everyday that I don’t have cancer.  I’m thankful for every night I get to kiss my boys goodnight, for every hug from my husband, for every phone call from my family, for every hug from a friend, for morning I wake up.  I’m content with my life.  I was always discontented before.  I still don’t know what God has in store for me, but it’s good and that’s enough.

I like being content.  That doesn’t mean that the boys don’t drive me nuts, that John and I don’t argue, or that I agree with everything everyone tells me, I don’t.  But I am content with what I have right now.  And that’s a huge change, and definitely one I can live with.