Pinktober

It’s October, and everyone know what that means.  The color pink is everywhere, it’s goal to raise money for breast cancer research, or so many people think.  Actually, only 20.9% of it’s annual budget goes to research, while 39.1% goes to Public Health Education.  Really?  Is there anyone over the age of 10 that doesn’t know what Pinktober stands for?  And perhaps most shocking is the fact that a paltry 5.6% goes to treatment.

While I realize that breast cancer is devastating to any women who find themselves faced with it, I’d like to point out something that most people DON’T know.  September is Ovarian Cancer Research month.  Our color is teal.  Do you see that displayed on products you buy, are you asked by any cashier, anywhere if you’d like to donate to Ovarian Cancer Research?

Ovarian cancer strikes a smaller proportion of women annually, approximately 22,000 women in the US will be diagnosed each year.  And even if detected early, the disease is most often deadly.  There is no screening for early detection.  It is often not detected by an annual exam and pap smear.  It’s symptoms generally mimic gastrointestinal problems and is often misdiagnosed as such until it has progressed to late stage.  I know this because it happened to me.

Know the symptoms, which are often diagnosed as IBS or urinary disorders:

• Frequent urgent need to urinate
• Changes in bowel habits
• Quickly feeling full when eating
• Abdominal cramping, hardness, and bloating
• Lower back pain or abdominal pain

And the next time someone asks you if you want to donate to Breast Cancer, go ahead and donate if your feel the need, but you might also ask them why they don’t recognize that September is Ovarian Cancer Awareness Month, and why don’t they publicize and support that?  Because for the sake of all women, everywhere, awareness is key.  Research is key.  The right treatment is key.  And the only way to turn the key and unlock the mystery of this disease is by calling as much attention to it as is called to breast cancer.

Protocol Perplexity

Lately there have been several discussions in my online support group about which diet is better for ovarian cancer.  Or which supplements?  Or which naturopath has the right plan?  Some of these discussions can easily escalate to disagreements, which is when I leave.  Do I really need to fight and bicker with women who share the same journey I do?  No.

And most importantly, these discussions offer no concrete proof of any treatment or diet that promises healing. Sure, there are cases where "my aunt did the 'xyz' protocol and she's healthy 20 years later." Great! That's wonderful news!  But guess what? Maybe she would have been healthy 20 years later, no matter what she did, be it chemo or some other protocol.  Not nearly enough people who have done this or that protocol are still healthy 20 years later.  If any of these protocols were successful even 80% of the time, why would anyone undergo chemo and all the ugliness that goes with it?

I'm beginning to think that if it's going to come back, it's coming back. Sure, a healthy diet is better for anyone, but the realist in me says that now that I have cancer, if it seriously mattered what I eat or don't eat, why do chemo? Why not just a healthy diet and forego the chemo? Or maybe I should combine the two???? Or maybe I should just do the chemo and eat whatever I want. Or, just maybe, there is no guarantee that what I eat or don't eat will keep it from coming back. Yes, there are women who have done everything right; some have survived and some have not. Just as there are women who have eaten whatever they wanted; some have survived and some have not. Will eating the right things help us to live with this disease in a stable state, longer? I have done a lot of reading, and I can unequivocally say I have no idea. In the end, maybe we all should just do what feels right to ourselves, for ourselves. The last thing we need is to feel guilty about the decisions we make.

Above all, what we really need in trying to live with this disease is peace of mind.  I think I would rather concentrate on achieving that as opposed to freaking out if I put a chocolate chip cookie in my mouth.

No Storm Waves, for Now

Yesterday was my first re-check by my doctor after three months chemo-free.  The technical update is CA125 elevated by 3, no need for concern were the first words I heard.  After my exam, I was given the "everything seems good" and we are still clinically in a 'good place'.  Since I am currently feeling good, with the exception of a few on-going chemo side effects, we will continue on another 3-month no chemo cycle.  What I learned yesterday is that even though the chemo drugs are out of my system, the after effects can remain for quite a while.  She did not seem overly concerned about mine, just instructed me to keep an eye on things and call her if anything changes.  I can do that!  I must say that there is not one part of me that misses those 6 to 7 hour days of infusion.  As wonderful as the chemo nurses are, and as comfortable as they make it for all of us there, it's really not a great way to spend the day.  There has been a positive to those days, however, and that is that I met some wonderful people there.  People who know what it's like to be me, who have and are still going through it.  People with whom I put no disguise on for. That doesn't mean that it's all doom and gloom with them.  Quite the opposite.  We talk about things other than cancer, we tell stories about our lives, and we even laugh. But if I happen to be having a day where I'm feeling scared, or down, or just tired of it all, I don't have to hide that.  My friends just nod their heads in understanding because they've all been there. That comforts me, because there are times when I'm with 'normal' people that I feel like I'm on the outside looking in. And I feel an obligation to appear upbeat and feeling good so as not to worry people. Sometimes, that is exhausting. This disease can do that.

But, enough of that.  For now, the waters are still, and if there was a beach nearby I'd roll up my pants, take off my shoes and enjoy the feel of the gentle sea washing up and over my feet.  But since this is the desert I'll just settle for enjoying the beautiful spring desert blooms, the lovely days and the beautiful sunsets over the mountains.  And I'll thank God for the opportunity to do this.

Yes, really.

Hello to all who end up reading this blog.  I created this two months ago, and haven't been able to post since I set it up.  Not because I've been feeling sick, but I think mostly because I felt that if I wrote about it, then it would become real.  Guess it finally hit me that it IS real, and now that I have faced that, I may as well write about it.  People say journaling is therapeutic.  We'll see.

My journey with this beast, which is my name for ovarian cancer, began in January, 2011.  I just didn't feel right. And my stomach was bloated, as in "I look 7 months pregnant" bloated. I kept pointing that out, but nobody seemed all that concerned about it.  After too -many-to-remember visits to my g.p., and a gastroenterologist, a colonoscopy, blood work, etc., I was given several diagnosis'.  IBS, acid reflux, diverticulosis, stress, IBS, a hiatal hernia, stress, IBS, acid reflux, stress.  You get the picture.  I knew that what my body was exhibiting, and what I felt in my gut were two completely different things, but the docs didn't seem to be listening.  I do believe my doctors were beginning to consider me a complete hypochondriac, which I actually even considered myself a few times.  Until I went to the ER one night in extreme pain trying to pass a kidney stone.  The ER doctor took one look at me (well, really at my stomach) and said "Whoa....let's get a cat scan here."  Yay, someone was finally paying attention!  And the result of that attention was "you have ovarian cancer, most likely stage IV."  HUH?  Even though I was dubious, really dubious, when the other docs kept telling me IBS, stress, etc........I never expected that diagnosis.  The symptoms just didn't feel at all related to any 'female' disorder.

Thus the reason for this first post.  Ladies, KNOW the symptoms of ovca:  http://ovariancancer.jhmi.edu/symptoms.cfm  If any of them persist for more than two weeks, see your doctor, take the list of the symptoms with you and make them prove to you it's NOT cancer.  There is a wealth of "pink" information out there, but not much "teal" (the color for ovca) information.  And while your chances of developing ovca are much slimmer than developing breast cancer, the former is much more difficult to diagnosis (a pap smear doesn't do it) and treat, and much more difficult to survive.  So please, take a minute to know the symptoms, because there is no test for it, no billboards, no marathons (well, there are marathons, but unless you have the disease you're not likely to know about them). It is called the disease that whispers, and it definitely is that.  Unfortunately, my story of diagnosis is not much different from thousands of other women with this disease, which is why the majority of those diagnosed with this are already in late stage.

I will probably post more later, but my main objective right now is to get the word out to as many women as I can.  It really is that important.

~cat