8 Years Ago, I Learned What It Means to “Put Your Big Girl Panties” On

It’s my cancerversary. I’m still here. Who da thunk it?!?!

8 years ago today, I chose to have preventive laparoscopic surgery in an effort to reduce my risk of ovarian cancer because I have the BRCA 1 gene mutation which puts me at higher risk for developing both breast and ovarian cancers.

When I woke up from surgery, I was told that I already had ovarian cancer. WTH?!?!

A week later, I had a much bigger surgery – called a tumor debulking – to remove all my lady parts, my appendix, my omentum (basically a fat cap), and numerous tumors. The cancer was then staged at 3C which is advanced or late stage cancer. Well, that truly sucked. Not only did I not know I had ovarian cancer, it was advanced as well. Double suck.

The 5-year survival rate is less than 50% for all women diagnosed with ovarian cancer because some types of ovarian cancer are more aggressive than others. Survival rates also increase when surgery is done by a gynecologic oncologist. They have the additional training needed to remove tumors without rupturing them and they know to look around other organs for additional tumors because ovarian cancer can lurk around in sneaky places. It’s just not like other cancers. It’s a beast for sure.

If the dismal survival statistics were going to apply to me, I wasn’t going to live to see my then-13-year-old son graduate from high school. He’s now a senior in college. 💜💖💓💞

I’m still here because:

1.) I became a knowledgeable patient and learned all I could about my disease. Knowledge is power and it is important to learn all that you can about your own cancer. People who bury their heads in the sand just do not do well.

2.) I participated in several clinical trials, along with traditional chemotherapy, because those were the right choices for me.

3.) I continue to keep my ear to the ground for the latest research.

4.) I have a good network of fellow survivors and advocates to gain information from and ask questions.

5.) I participate as an equal partner in conversations with my gyn onc about my treatment options. (By the way, my current treatment is kicking my butt and has left me with a hairdo that resembles a Q-tip but it seems to be working.)

6.) And I’m also just plain too stubborn to allow cancer to take me yet.

Some things that I have learned while traveling this journey:

  • I have learned to say NO without regrets.
  • I have learned what really matters and not to get upset about things I cannot control.
  • I have learned that my body is stronger than I thought. I have been in treatment off-and-on since diagnosis – more ON than off – and my body is definitely tired.  I would love to have a break from chemo but I am just not able to do that right now.
  • I have learned that it is o.k.  to take a nap in the middle of the day.
  • I have learned to listen to my body and to slow down when I am tired.
  • I have learned how to advocate for the ovarian cancer community in several ways whether it is speaking with my elected officials to ask them to support funding for research and awareness campaigns or whether it is speaking to the newest medical professionals with Survivors Teaching Students® about the signs and symptoms of ovarian cancer in the hopes that they will remember my story and diagnose women at earlier stages.
  • I have learned that it is o.k. to have fun NOW and not to put off things that I want to see and do.
  • I have learned who my true friends are because a lot of folks take a hike when someone is diagnosed with cancer.  Even more run away when there is a recurrence. My circle of support is small but it is strong.
  • I have learned what it means to put “your big girl panties on” in everyday life.  It means that I keep going and keep showing up for “life” regardless of the cards that I have been dealt.

Know the signs & symptoms to BEAT ovarian cancer:

B – bloating
E – eating & feeling full quickly
A – abdominal pain
T – trouble going to the bathroom or frequent urination

Additional symptoms might also include low back pain & chronic fatigue.

If you or someone you know has symptoms with no definitive diagnosis for the cause of the symptoms – regardless of age!!- please get a referral to a gynecologic oncologist to rule out ovarian cancer.

 

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I am honored to be the recipient of the Big Girl Teal Panties this year. For more information, please access the link above in the post.

Learning to Listen

2019 6 17 LIstenFor the past eight years, I’ve watched my best friend fight her body’s rebellion in the form of Ovarian cancer.

She’s had surgeries, blood transfusion, infusion ports, tubes down her nose, and more lab draws than I can count.

Her life revolves around doctor’s appointments, lab results, and treatments as she tries to have some normalcy in the everyday things.

When she first started this journey, I’ll admit, fury wouldn’t begin to accurately describe my feeling toward the situation.

How dare the evil “C” come after my friend so fiercely! (Insert multiple profanities here.)

If cancer had been person, I would probably be in prison right now. 2019 6 17 Most-people-do-not-listen-with-the-intent-to-understand-they-listen-with-the-intent-to-reply1

Seriously.

Not really.

Probably.

I’ve said enough…

Anyhew…she got through her initial “debulking” surgery, which consisted of her getting a large, new belly scar, an infusion port, and a whole lot of new medications.

My anger grew as she told me about her upcoming treatments and how much her life changed, but compared to her ferocity at her diagnosis, mine probably looked like a couple of happy bunnies bouncing through the tall grass. Still, I wanted, needed to do something. Fix the situation. Make it better. Have all the answers.

I needed that, but that’s not what she needed.

When she called to tell me about her latest lab results, chemo treatments, or doctor’s appointments, she explained didn’t want me to fix anything.

She didn’t need me to tell her the latest trend in chemo research or if she’d just take these six things out of her diet or if she’d stand on her head every morning, it would cure her cancer.

She certainly didn’t want any articles about miracle cures or survival statistics.

No, what she needed me to do was listen. Just listen.

Understand, that’s difficult for me to do. Simply sit quietly, take it all in, and not spit out a solution.

I have always loved to help people. Over the years, (hopefully) I’ve given helpful advice and fixed situations that need a hand. I’m quick to address a problem and love the chaos of unpredictability.

That’s why I was a damn good trauma/critical care nurse. Before then, I waited tables and tended bar. All are perfect jobs for someone who’s got a brain thinking at ninety miles per hour 24/7.

Such skills didn’t bode well with two thousand miles between us. I couldn’t help her with the daily things like making meals or cleaning her house or helping her get to and from doctor’s visits and chemo treatments.

That stressed me just as much as her battling this stupid, stupid cancer.

2019 6 17 Never Miss a Good ChanceThen in the middle of all this chaos, something beautiful happened. When I asked her what I could do to help, she said for me to “hang out” with her while she had her treatments. “Be there” when she needed to vent and help her translate some of the medical terminology that didn’t quite make sense.

So, every Thursday, we started texting as soon as her butt touched the treatment chair. She’d call me to and from doctor visits and lab draws.

She’d vent when the chemo caused neuropathy bad enough that she didn’t trust her own feet underneath her.

I’d check on her several times a week, simply ask how her day was going. Not all conversations were about cancer. With over forty years of friendship, we quickly rolled back into talking about any and everything–kids, work, books, movies–whatever came to mind.

With all those conversations, I listened and learned and absorbed everything she told me about what she went through.

The obstacles with insurance. The frustration with remembering things she never had trouble remembering before because of “chemo brain.”

She explained how life at work changed because some of her co-workers wouldn’t look her in the eyes anymore when she lost her hair. (Can you believe that?)

Because of that, when I see someone who appears to be going through cancer treatments, I always make eye contact, smile, and say hello. It’s simple and it can mean the world to someone having a particularly crappy day.

She told me how to better ask questions of those going through difficult times and how to  better help.

She also explained, sometimes it’s perfectly okay to say…nothing.

That’s right. You read that right. To say…nothing. To simply sit and listen.

That doesn’t meant you ditch people. What it means is you keep being present, you keep showing up, and you keep being the same friend you’ve always been.

And it’s perfectly okay to tell someone, “I’m not sure how to help you.” or “Please tell me what I can do for you.” or “This sucks.”

Communication can make an amazing difference in the life of someone going through this crap and to communicate better, simply learn to listen.

2019 6 17 Listening to help

If these symptoms are new to you and persist for more than 2 weeks, please talk to your health care provider about addressing them and parameters for follow up.

If you feel your provider isn’t listening, please get a second opinion.

2016 8 31 Symptoms of OC

 

Nine Lessons I Have Learned as a Cancer Survivor

It’s National Cancer Survivors’ Day. There are so many of us that have defied the statistics and are still here.

Here are some things that I have learned over the years:

1.)  I have learned about the kindness of strangers. Truly.  Most people are kind, especially in the world that is cancer.  I was told to stay off the internet after being diagnosed (too much scary info), but I knew I needed support. I went looking for it online because “in-person” support is lacking in my immediate community.

The kindness of strangers shaped how I handled and navigated my diagnosis from the beginning. Those ladies shared information at all hours of the day and night by telling me to become knowledgeable about my disease, telling me that clinical trials are not a last resort (they are often a “first resort” as mine was), telling me that it’s possible to live with cancer, etc.

I believe with my whole heart that I would not still be here without their unselfish sharing of information during the early days of my diagnosis and their willingness to continue to share information today. This is one of the “positives” of social media – being able to connect with others. I try to give back and share as much as I can.

2.)  The medical community can only do so much.  I learned early on in my diagnosis, thanks to the advice of others, to plug in and participate in my healthcare as well by:

Talking to other survivors.
Learning about reliable research about the disease.
Being knowledgeable about the disease, know how it behaves, and learn what treatments might work.
Engaging in respectful conversation with the oncologist.

For additional information on questions to ask your oncologist, please click here.

Anyone who knows me knows that I’m just too stubborn to let cancer take my life.

3.)  I have learned who my “real” friends are and that’s o.k.  It sucks to have cancer and it sucks to watch someone go through it. There’s no rule book on how to handle all of it so when people exit my life, I harbor no ill will.
I will, however, offer those people my support should they need it in the future because dealing with a chronic disease can be lonely.

4.)  I have learned what truly matters and what does not. I am blessed to have the consistent support of my sweetie and my son. It must really suck to see me day in and day out and not be able to “fix” the cancer. A lot of people do not have this kind of support or their support goes away which is very sad.  My “to do” list can wait because I’d rather enjoy the simple things like taking a walk at the harbor, going to a Sox game,or enjoying a home-cooked meal with loved ones.

Heck, I even threw in a Boston Marathon two years ago and was the very last to finish but I didn’t care because I finished that darn course and got the same medal as everyone else.

 

5.)  I have learned that statistics are just that – silly numbers.  I’m more than a statistic and I have proven the statistics wrong.

6.)  Life is much too short to NOT enjoy it.

Cancer may sap my strength, sleep, and appetite but it has never taken my hope.

7.) Although I am terribly introverted, I enjoy being an advocate for the ovarian cancer community.
I am still finding my way to find my strengths in the advocate world but at the very least, what I enjoy most is sharing my story with new medical professionals.  This gives me the hope they will diagnose ovarian cancer at earlier stages when women come to them looking for answers for the symptoms they have.

I’m in there, I promise!

Sen. Collins and myself (2019)

On a whim and because some other survivors talked me into this, “introverted me” ended up on Capitol Hill for the first time in 2012 to share my story and ask for MILLIONS of dollars for research and awareness campaigns.
Little did I know that I would continue to go back again and again after that very first time.
I have learned that going to Capitol Hill and maintaining a relationship with the offices of my elected officials really does make a difference.
I am often the only person in Maine advocating for research dollars for ovarian cancer but I am blessed to be able to rally others across multiple states (including Maine) who are willing to reach out to their elected officials’ offices as well to make a difference.

8.)  ALL RESEARCH MATTERS and ALL RESEARCH CAN HELP MULTIPLE CANCERS because of commonalities in cell types, pathways, proteins, etc. (it’s not just about the location of the cancer anymore).

9.) And perhaps most of all, I have learned that there is a “new” normal after cancer and it’s ever-changing.
It does not mean that my life is any better or worse than before cancer; it’s just that it is different and it winds down a different path.
I have many more physical scars from the multiple surgeries.
My belly button moves a bit after each surgery.
I have a “front butt” thanks to the surgeries (that surgical cut down the front creates “cheeks” on either side when the incision is closed).
My hairstyles have changed through the years not necessarily because I like to change it up but because of chemotherapy and its side effects.
Right now, my current look mimics John Madden’s ‘do from back-in-the-day. It’s the best I can do right now and that is o.k.
I may not be able to do some things that I was able to do before cancer like go non-stop for hours and hours whether it’s walking, working in the yard, working too many hours at my job, etc.
I need to rest more but that’s totally o.k. I just take life at a slower pace now and I’m happy with that.
It’s just all a part of the “new” normal.

I just keep on keepin’ on because it is what I know how to do.

 

 

 

 

Advocate Leaders 2019

Front row: Diane Riche (ovariancancer101.org and OCRA 2019 Advocate Leader for Massachusetts), Frieda Weeks (hopeforheather.org and OCRA 2019 Advocate Leader for New York), Shannon Routh (tealdiva.org and OCRA 2019 Advocate Leader for North Carolina)
Second row: Jill Tanner (OCRA 2019 Advocate Leader for Kentucky) , Melissa Kritzell (OCRA 2019 Advocate Leader for Ohio), Terri Gerace (OCRA 2019 Advocate Leader for Louisiana)
Back row: me (OCRA 2019 Advocate Leader for Maine), Kathleen Maxian (ovariancancerproject.org and OCRA 2019 Advocate Leader for New York)

For more information on ovarian cancer resources, check out:

TealDiva.org

OvarianCancer101.org

HopeForHeather.org

OvarianCancerProject.org

ORCAHope.org

Dear Friend with Cancer

Dear Friend with Cancer,

Cancer sucks.  Period.  We both have it and we both have recurred twice.  There will likely be no long remissions for either one of us but one thing I know for sure:  we can LIVE with cancer.  That’s right.  We can live with it because it can be treated like other chronic illnesses such as diabetes.

Sure, chemo sucks, but it can work to prolong our lives.  There may also be clinical trials that might help.  However, nothing will work if we are not ‘plugged in’ and are not being an active participant in our medical journey.  I am a firm believer that attitude is at least half the battle if not more.  Without a positive attitude most of the time, our life becomes very short.  (It’s o.k. to have sad days as long as we don’t unpack and stay there.)

Unfortunately, with this latest recurrence, it looks like you have given up hope and there’s not a single thing I can do about it.   I am not scolding you in any way, I assure you.  I am merely stating my observation from the perspective of someone who cares about you.

To all the ladies out there dealing with ovarian cancer, support is available either in person or via phone, email, or the internet:

SHARE – this organization has a hotline that you can call at any time and speak with a trained fellow survivor.

Woman to Woman – this organization is a partnership between QVC  and the Ovarian Cancer Research Fund Alliance.  It is in several hospitals around the country and also provides support to women diagnosed with ovarian cancer.

Ovarian Cancer Resources – these organizations are partner members with the Ovarian Cancer Research Fund Alliance.  Many have support groups available.

In my state, we are fortunate to have the Patrick Dempsey Center for Cancer Hope and Healing.  This organization provides support, exercise, nutrition, crafts, etc., to cancer patients, their families, and their caregivers FOR FREE.  It’s an amazing organization that I drive two hours each way so that I can go there for my own support as well as for my son.

My sweet friend, so many people love you and care about you.   I have never felt so helpless as I do right now.  There is support available and I hope you will reach out. No one gets through cancer alone.

34ba23d3a5f75f894f80f50186649540

It’s OK to Advocate for Yourself

Throughout the last 5+ years, I have learned a lot about advocating for the ovarian cancer community: I have been to Capitol Hill several times to ask for research for dollars for better treatments and an early detection test, I have participated in the American Association for Cancer Research Survivor Scientist Program, I have been a consumer reviewer for potential innovative research, and I am a presenter with Survivors Teaching Students® where we speak with 3rd-year medical students, physicians’ assistant students, and nursing students about our stories in the hopes that they will refer patients who present with symptoms to a gynecologic oncologist so that if ovarian cancer is present, it will be diagnosed at an earlier stage.

In these past few years, I have also learned to advocate for myself especially when it comes to healthcare.  For example:

  • During my frontline chemotherapy treatments, the infusion center where I was initially sent was being remodeled.  The temporary setup was not ideal:  patients were packed in like sardines, there was absolutely no privacy in conversations because the arms of the most uncomfortable chairs were touching the next patient’s chair, and my first treatment included the nurse seating me and then going to lunch for an hour so no one checked on me or explained what was happening. When I finally received chemotherapy, I felt like I was not a person at all  – I was merely “a port access” and no one looked me in the eyes to tell me what was happening or how long it would last.  I was already terrified to receive chemotherapy and by the time I left, I was so stressed about this experience that when I saw my oncologist the following week, I told her about my experience and I asked if there was another location for chemotherapy where I would be treated a person first and patient second.  She was wonderfully supportive and found me another place to receive chemotherapy for the duration of my treatments.
    • The “takeaway” is:  Express your concerns and ask for what you want/need. Do not suffer in silence.
  • I am a supporter of clinical trials; however, they are often an administrative nightmare for the patient who is already stressed but then must take on the role of communicating between the various parties involved.  If your oncologist is also facilitating the clinical trial, things tend to run much smoother.  I have experienced the smoother option as well as the administrative nightmare but patients still need to advocate for themselves if they really want in a trial.  Be the squeaky wheel because time is often a stringent guideline to get in to one.  At the same time, if the trial is not meeting the patient’s needs, it is o.k. to voluntarily leave a trial.  I did this a few years ago when I was in a maintenance trial in Boston. There was ZERO communication within that facility, my calendar for trial tests was wrong (they wanted to do tests that didn’t need to be done because it was on the calendar in error) and I pointed it out every week, then every month, and no one took responsibility.  I had to physically carry information from one desk to another in the same office.  I also did not receive the travel reimbursement that the clinical trial covered although I asked about it every time I went. After 5 months, I told the Boston doctor that I was going back home for follow-up care. I told her that this was a “world-class” hospital but that does not mean that treatment and care is any less stressful if the patient has to do other people’s work.   She agreed that there were issues – because I had been bringing them up at every visit – but did not seem concerned enough to try and fix it.
    • The “takeaway” is: Just because it’s a world-class hospital and has a great reputation does not mean that it will do everything it can to ease your stress as a cancer patient.  Tell them what you want/need and if they won’t fix it, it’s o.k. to go elsewhere.  (I did eventually receive my travel reimbursements but it took a very long time and I had to keep asking every week.)
  • If you have scans or tests done, do not leave it up to the doctor’s office to call you.  I know too many people who “fell through the cracks” and did not receive the call-back for mammograms, etc.  Call the office.
    • The “takeaway” is:  Be the squeaky wheel.  It’s your health that is at stake.  Keep calling until you get answers.
  • Second opinions are totally o.k. to seek out.  I have a terrific gynecologic oncologist in my home state who facilitates clinical trials.  However, there was one that I really wanted to get into (I’ve been in 4 different trials thus far) that was in Boston.  I went to Boston last fall and it was determined that the trial may not be my best option so we pursued traditional chemotherapy in the hopes of shrinking the rogue tumor and then perhaps I could get into a different trial.  The tumor stopped responding to chemotherapy and the Boston physicians recommended surgery with a particular surgeon.  I was not in favor of this ( I had already had two other tumor debulking surgeries at this point and really did not want another surgery) but I had a consultation with that surgeon who was terrific.  However, he was a GI surgeon and not a gynecologic oncologist. I am very knowledgeable about how my cancer grows and oftentimes there are small tumors in my pelvic region that do not show up on scans.   Therefore, I wanted a gynecologic oncologist in the OR just in case he/she determined that the scheduled surgical procedure may not be the best option once he/she looked around after the initial cut.  My Boston physician would not be there and the GI surgeon did not think it was necessary.  My “gut” feeling was that this was not the way to go.  Again, even though Boston has world-class hospitals with world-class physicians, it was not the best option for me.  I went back home and met with my gynecologic oncologist as well as a surgical oncologist that she recommended.  I felt so much better about their approach and scheduled the surgery with both of them in the OR with the gynecologic oncologist “driving” the surgery.   In the interest of full disclosure, the surgery ended up being the same that Boston would have done. However, I would not have that piece of mind of a gynecologic oncologist looking around at the beginning of the surgery to see if there were any more tumors lurking about or to change plans if need be.
    • The “takeaway” is:  Be knowledgeable about your illness.  Listen to your gut. It’s o.k. to get second opinions. Do not worry about hurting anyone’s feelings because it’s YOUR body and YOUR life.

Whether it’s cancer or another chronic illness, be knowledgeable and ask for what you need.  If you are not getting what you need or are not getting answers from your current physician, find another one who believes in patient-centered care.  That is where you will find the best care for YOU.

Self Advocacy PostIt

What To Do–Make Eye Contact

I’m super excited to introduce What to Do Wednesdays to all of you.

Many times when people are hit with that dreaded “C” word, the patient, family, friends alike have no idea what to do. How to help or even where to start.

We’re hoping that this weekly post will give many of you ideas on how you can help in the most productive ways. These will cover everything from social interaction, things to do, recipes, and general feedback so let’s begin…

2015 12 30 Dr Seuss Eyes
With the end of 2015 quickly approaching, so many of us are writing down (either literally or mentally) those over the top resolutions we’re going to accomplish in 2016. (i.e. Lose 75 pounds by Spring Break, find a new job that pays double, but has less responsibility, organize my entire house, eat only organic foods, clean up my potty mouth, etc).

They are all very well intentioned and obtainable, but what I’ve found is many of these resolutions are the ultimate goals. No one ever talks about the journey to get there or the small goals and accomplishments that happen along the way. It’s always the eyes on the prize–the big prize.

Problem is, if the only thing you focus on is the end result, the after picture as it were, then you’ll never get there. It takes work to achieve any goal and fighting cancer, whether you’re the patient or the caregiver, can feel like an everyday uphill battle.

As a person looking from the outside in, it can be extremely difficult to know what to do for those dealing with cancer.
Do I say something?
Do I do something?
What do I do?
Do I even know them well enough to get involved?
I don’t know them at all, so do I really need to do anything?

Here’s the deal. Just like those New Year’s Resolutions we’re all going to set, but many will have no actual plan to accomplish, it starts with small, purposeful steps. Understand, when helping or addressing those that are fighting cancer, Nothing you do has to be grandiose.

It can be the small gestures that can speak volumes. I’ve learned this as Seana has been so gracious to share her thoughts, feelings, and experiences with me about her journey with Ovarian Cancer.
There were things I hadn’t even considered or understood, which brings me to my first tip of what to do when someone you know/work with/see is affected by cancer.

Make eye contact

2015 12 30 Eye Strength

When people are diagnosed with cancer, people around them stop making eye contact with them.
People at work, people at their church, their friends, people they’ve talked to at the grocery store each week, other parents in the carpool—the list goes on and on.
You think, “oh not me. I wouldn’t avoid looking at someone who’s been diagnosed with this.”
Really? It’s hard. It’s hard to look at someone after that crappy news and act like things are peachy keen. It doesn’t mean it can’t be done because it’s done everyday, but understand it’s hard. It’s difficult for the person you’re looking at as well as yourself because the things you weren’t thinking about yesterday  (cancer) are on your mind today.
This especially holds true when the chemotherapy has caused hair loss and I mean every stinking strand of hair from the top of your head to the bottom of your feet. Eyelashes, eyebrows, arm hair, pubic hair, every kind of hair falls out and this can be visually confusing to those around the person going through it, but don’t turn away.
Do you best not to make that cringe face or with tear-filled eyes. Simply talk to this person, keep the lines of communication open.

If you’ve always known the person, keep talking to them, make eye contact, ask them the same questions you always ask:
Did you watch Grandfathered last night? Isn’t John Stamos gorgeous?
Have you seen that new Star Wars movie? Why don’t they have any Rey action figures at Target?
Did you get that last TPS report?
Did you want anything from Starbucks?

Many who are hit with the “C” word go through a lot of introspection, wonder what they did “wrong”, curse themselves for not eating enough salad–scratch that–not enough organic salad, for being mean to that kid who picked his nose in the third grade, I should have taken that multivitamin everyday, I shouldn’t have looked at those Playboy magazines…the list is endless. There are many, many things that race through their minds like that endless (and annoying) ticker tape that runs across the bottom on the screen of newscasts.

Those who’ve been hit in the face with this diagnosis have enough going on without people avoiding them. Without losing human contact with the people they see on a daily basis. The simple act of looking someone in the eyes can speak volumes.
2015 12 30 Eyes and Audrey

 

 

 

 

 

 

I hope this helps. Come back each week to read another tip on how to help and what to do for those who are dealing with cancer.

Thanks for reading.

 

What Will Your Dash Be?

No one knows how long we have but we should make the best of the time we do have. Life cannot be taken for granted. What will your dash be? You know – the dash between your birth date and the date of your death. It’s been a while since I’ve written a post and this is because my cancer came back. I again went through chemo and am now in a clinical trial with an oral medication that will hopefully prevent recurrence. While dealing with the “feeling like I’ve been hit in the gut again” emotions that go along with being told that the cancer was back, I took a good hard look at what my purpose must be to keep going through this. Some people say that I’m an inspiration, some say that I’m tough, and some people just don’t talk to me because they don’t know what to say.

Growing up, I was quite introverted and preferred to mingle with the wallpaper rather than talk to people. As I became an adult, I found myself working in jobs that required conversation with people and that helped break me out of my shell. After being diagnosed with cancer the first time, I truly didn’t care about being shy any longer. If nothing else – besides being a mom which is my greatest accomplishment – I think that one thing I have done is to try and raise awareness about ovarian cancer to anyone who will listen. My passion is advocacy. I have been to Capitol Hill four times in the last 2 1/2 years to talk to legislators. I have sent emails to legislators. I have spoken to nursing students as a part of the Survivors Teaching Students ® program to help change the medical profession’s outdated views on ovarian cancer. I have been interviewed by the local news. I next want to get involved in research advocacy because honestly, we need an early detection test and we need better treatment options.

What motivates me is that I don’t ever want any other woman to go through ovarian cancer. Sadly, many women do. My cancer is caused by a genetic mutation which runs rampant through one side of my family. I have been blessed by the kindness of strangers – thanks to the internet – to find support, knowledge, and strength to get through this insidious disease. Most women in my family have had breast cancer or ovarian cancer or both. One of those was a distant cousin that I met through email because we both battled ovarian cancer – her first, then me. Then she recurred, then I did. We exchanged emails about our treatments and surgeries and hopes and fears. She fought for 3 1/2 years before the cancer took her life a few days ago at the age of 40. She was so young but I have no doubt that her dash tells a great story about her life which included offering me support. I know how much she loved her daughter and that she never wanted her to face cancer. And now that my cousin is gone, I will continue to advocate so that her daughter may never have to deal with ovarian cancer in her lifetime. I don’t know how long I have but I want my dash to include that I did all that I could to help the next generation of women by raising awareness about the need for research for an early detection test and patient-targeted therapies to stop cancer in its tracks.  What will your dash be?

The Dash by Linda Ellis

The Dash by Linda Ellis

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