Reluctant Advocate

I’ve been thinking about how I got involved in ovarian cancer advocacy, and I thought what better place to tell my story.  Humiliating as it is!

When I finally settled in to the fact that I had advanced stage cancer, requiring major surgery then 6 rounds of brutal chemo, I made a decision:  I was going to put my head down, get through it and never look back.  I wasn’t going to learn about it, join support groups, or read others blogs.  Most importantly, I was NOT going to become one of Those People – the ones who have turned their life into a crusade.  Yet here I sit, on a crusade to eradicate ovarian cancer.

Here’s what happened.

I was about 8 months out of treatment.  My ex had moved out, gone public with his GF, and drug her around everytime he had visitation with our children.  One night my 12 year old came home from a visit with him and around his wrist was a black rubber bracelet.  I innocently asked what it was for.  This is true – I had no idea, and I wasn’t ready to pounce, even though I did.  He was really excited to talk about it.  He,  his dad, and dad’s GF had gone on a walk to raise money for a girl who had died from brain cancer.  He was so proud and excited, in the way only a 12 year old can be.   I interrupted him and said “Well I think it’s bullshit that you are raising money for an illness no one you know has, when you have a mother with ovarian cancer and you haven’t done anything for that”.

I think it took to the word “bullshit” for my brain to catch up with my mouth and start yelling STOP.  By then it was too late and, as I slunk away in shame, I saw him take off the bracelet and put it on the coffee table.  Two days later it was in the trash.

Naturally I apologized for having said what I did, but here’s the thing about parenting:  there are some words you can never take back.  There are times when you’ve said something so vicious, uncalled for, demoralizing, or simply mean, that no matter what you say or do the words will always remain in that child’s brain.  I had destroyed his sense of pride for doing something good in the world.

A few nights later we were having dinner.  He put his fork down and looked at me and said (this is quote, because his words are forever seared into my brain!) “you know mom, I think it’s kind of bullshit for you to put others down for the causes they support when you do nothing to support ovarian cancer”.   He had learned to deal out shame from a pro – ME.

After my initial shock I told him he was absolutely right.  Then I asked if he wanted to do something and he said Yes.  We spent several nights talking about it.  We did not want to duplicate efforts already being made, so we decided our mission would be to educate young people about the symptoms of ovarian cancer.  Since then we’ve gone on to raise money, and expand our awareness campaign, go to DC to advocate for funds, and lots of other fun things.

This is the part no one tells you:   Advocacy Work Sucks.  (or was it just me that missed that lesson?)

We are currently fund raising for our annual walk and I’m pursuing everyone I know, relentlessly, to raise money.  And I can only imagine what they are thinking when they see an email from me, or watch me walk into a room wearing Teal, or post, yet again, on FB.    I know I’m annoying.  I hate that I’m annoying.

Every time I decide I’ve had enough something happens to draw me back in.  Last year it was the death of a lovely 36 year old.  She had battled the disease for 7 years before her death, but she retained her unstoppable attitude till the end.  This year that something happened during my annual mammogram.  The technician remarked about the notation of cancer in my file.  We got to talking about it and lo and behold, she had no idea what the symptoms were!  Here she was, a 50ish woman working in a medical field, with no idea that she could be at risk for ovarian cancer.  When I told her the symptoms she said “really?  because I’ve been feeling all of that for the past month”.  I felt extremely fortunate that I was able to tell her what steps to take.  I pray she took them.

This is how I got involved in Survivors Teaching Students.  Each time I tell my story to a group of medical students I feel confident I’ve educated them in a way no teacher ever will.  Every time my son and I come up with a new awareness campaign idea (most of which have been spectacular failures) I get that tingle of excitement.  I think back to when I was a teen and people never talked about breasts, yet today kids wear “Save the TaTa’s” bracelets, and I see that day coming for ovarian cancer.  I see a day when TEAL is as common place as pink, where women and doctors know the symptoms and tests, and where researchers have the money they need to carry out much needed investigations.  I see a day in which the survival rates, unchanged over the past 40 years, have gotten better.  I see a day in which ovarian cancer is diagnosed in stage 1 more than stages 3 or 4.  And I keep going.

Since I now realize I can use this as an educational moment, here’s what you need to know:

The symptoms of ovarian cancer are –

  • Bloating
  • Urinary frequency
  • Change in bowels
  • Difficulty eating/feeling full quickly
  • Abdominal or back  pain
  • Fatigue

If you have even 1 of these symptoms for more than 2 weeks go to your Doctor.  Tell them you understand ovarian cancer is not highly likely (1 in 72) but you want it ruled out.  Request a transvaginal ultrasound and a CA125 blood test.

If they tell you no, if they suggest you change your diet, take laxatives, loose weight…….Go See A Different Doctor.   Standing up for yourself, believing in yourself, erring on the side of caution can make the difference of a 95% survival rate versus one much, much lower.

And to dispel a few common myths:

  • it happens at all ages.  One of my favorite people was diagnosed at age 16.
  • you do not need a family history to get it.
  • it doesn’t coincide with menopause.
  • there is no progress being made in diagnosis or treatment
  • it is not a death sentence.

Today ovarian cancer is being viewed as a chronic disease.  In stages 3 & 4 there is am 85% recurrence rate.  Most women, after they recur, remain on chemo for the rest of their lives.  I know many women who have been fighting it for years and lead fulfilling, albeit reduced, lives.

It is true that progress towards diagnosis and treatment have been slow coming, but there has recently been some very exciting news.  Researchers now believe that ovarian cancer begins in the fallopian tubes.  They also believe that if women, after completing their family, have their tubes tied or removed the incidence of ovarian cancer will decline.  It remains to be seen but how exciting is that!.

One final thought:  if you have just read this and are now certain you have ovarian cancer – GREAT!  Chances are you don’t, but now you know what do.  Go forth and advocate for YOU.  You are worth it.

Remember, you are beautiful.

  • Bloating
  • Eating less, feeling fuller
  • Abdominal Pain
  • Urinary urgency
  • Tiredness
  • Increase in weight
  • Feeling full quickly
  • Urinary frequency
  • Loose or difference in bowel movements

Beautiful.  Let’s keep you that way!

2 thoughts on “Reluctant Advocate

  1. Please let your readers know that often breast cancer comes and is “cured” for 20 years and then comes ovarian cancer. It happened in my family twice. In both cases the breast cancer occured around age 35.
    Good luck to you. Be loud! Be very loud!


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