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.

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

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

Got de-ported – Now what?

I was de-ported last week.  Not in a Justin-Bieber-kind-of-way but in a medical-sort-of-way.  I had my one remaining IV mediport removed.   When I was originally diagnosed with ovarian cancer, I qualified for a clinical trial which required two ports – one was IP (intra peritoneal) and one was the traditional IV power port in the chest.  Due to clinical trial protocol, I had the IP port out as soon as I finished chemo.  My trial included Avastin treatments which went on for several more months so I kept the IV port.  Once Avastin treatments were over, I thought I’d have the IV port taken out right away.  However, after thinking about it, I opted to keep it.  I felt that it was my umbrella, so-to-speak, so that I could keep the “rain” away which means if I kept the port, maybe I’d never need again.  Ovarian cancer has a high recurrence rate and I was late-stage when I was originally diagnosed so it’s very possible that it will come back.  

However, I have decided that 2014 is the year for change.  Since I put so much effort into staring down cancer, after treatment was completed, I started getting involved in advocacy through the Ovarian Cancer National Alliance (see my previous post with former Miss USA Olivia Culpo).  Now that my port is out, I feel even more passion for continuing the advocacy efforts to educate women, medical professionals, Capitol Hill, and anyone else who will listen about the signs, symptoms, and unquestionable need for an early detection test for ovarian cancer.

This is why my efforts will now be with the GrassTops Program through the Ovarian Cancer National Alliance. I have enjoyed being a part of the Ovarian Cancer National Alliance’s annual conference for the last two years.  This new opportunity with GrassTops will allow me to continue to speak for young girls, teenagers, and women of all ages who have lost their lives to this disease (including my grandmother) as well as to speak for those who are still in the fight and those who have not yet been diagnosed.  I am committing the next two years to help the Alliance raise awareness and research dollars.

Since this is my year for change, I have also been blessed with a charity fundraising slot in the 2014 Boston Marathon (as a former resident, Boston is my adopted hometown).  Boston is a HUGE marathon and has always been a goal of mine.  I completed five marathons prior to my cancer diagnosis.  The Boston Marathon will my first marathon post-cancer and post-chemo.  My body is built for endurance, not speed, so I will never be a time qualifier yet I was truly lucky to gain a charity slot for South Boston Neighborhood House a.k.a. The Ollie.

I feel strong – both physically and emotionally.  I cannot dwell on the probability of recurrence.  I need to enjoy TODAY.  I will not let cancer sap any more of my happiness nor will I be saddled with “what-ifs.”   It’s time to move forward and put cancer in the rear-view mirror. One day recently I awoke and said, “I’m all done with this mediport.”  So out it came last week and I have no regrets.  I am so excited to be healthy enough to be training for another marathon. Boston will be a homecoming of sorts for me and it will be a dream come true.

This is the year for change – the Boston Marathon is a life-long dream and I will realize that dream very soon. If you are able to help me reach my fundraising goal for South Boston Neighborhood House, please do so through this link.. Even $10 will go a long way to help this fantastic organization that does so much to support the South Boston community.  Thank you in advance!!!  I also dream of an early detection test for ovarian cancer.  I will continue the fight for all women. I will do all of this without any more mediports in me.  So long, cancer!!

ovarian-cancer-ribbon2.jpg

 

Getting outside of my comfort zone

This past July, I had the privilege of attending the 15th annual Ovarian Cancer National Alliance conference in Washington, D.C.  I did not know a single person before going but I wanted to step outside my comfort zone and see what this conference was all about since I’d heard great things about previous ones.  The weekend was full of information about clinical trials, the latest research, and loads and loads of support from numerous organizations as well as fellow survivors.  I had the honor of meeting – in person – some of my “teal sisters” that I’d met through an online support group.  The energy and positive vibe throughout the weekend was fantastic.  I learned so much from other survivors from how to deal with side effects to how to deal with stress to nutrition guidelines to getting involved in advocacy.

We had fabulous speakers including the physicians with the latest research, people who spoke about their personal journeys or the journeys of their family members, and Jack Andraka also spoke to us.  He is the 15-year old who won the Intel award for developing a simple test (which only costs 3 cents) that has so far been 100% accurate in detecting pancreatic, ovarian, and lung cancers.  His test hasn’t yet been entered into human trials but he hopes to do that soon. He is a down-to-earth person who truly wants to find an early detection test for cancer and he may have found it.  I, for one, am very grateful for his research. If you would like to see a bit more about him,  please click the link: Jack Andraka Interview with Diane Sawyer   Our keynote speaker was Miss USA, Olivia Culpo, who had been crowned a few weeks before the conference.  Her mission for this year is to raise awareness about breast and ovarian cancers.  She is a very well-spoken, kind, and intelligent young woman who will work tirelessly to promote this awareness.

In conjunction with the conference, I participated in Advocacy Day. I went to Capitol Hill with about 70 other women and families – including Miss USA – to advocate for research dollars and to advocate for September to be officially recognized as Ovarian Cancer Awareness Month.  This was a totally new experience for me but it was very gratifying.  I met with the staff members of the Senators and Congresswoman from my state.  They were very receptive to my cause and listened to my story with concern.  I told them that mortality rates have not changed in the last 40 years for women dealing with ovarian cancer and that this cancer affects all ages including 3-year old girls, teenagers, women in their 20s, etc.  This is not an ‘older’ woman’s cancer.  The statistics are grim but hopefully, in some small way, I hope I’ve made a difference to raise awareness and get research dollars to find an early detection test for this insidious disease.

I felt like I had met a whole new branch on my family tree during this trip and I was so bummed when the conference ended because I really enjoyed meeting everyone and sharing our experiences.   Therefore, I jumped at the chance to attend a smaller conference in Boston this weekend that was organized by Ovations for the Cure.  Again, I went to the conference not knowing anyone. (As it turns out, I met up with a woman I’d met at the DC conference and there was also a woman from my church who attended.) It was a one-day event but it also provided information and I again had the opportunity to meet other survivors.  There was no cost for this event which was held at the Four Seasons in Boston.  The conference was very informative and we were treated to a fabulous lunch in Aujourd’hui. After all the poking, prodding, needles, surgeries, chemicals, etc., of the past year, it was so refreshing to have had this opportunity to participate in a local event and have lunch in a 5-star restaurant at no cost to me.

What I learned at both conferences is that there are a lot of women living with ovarian cancer.  I want to stress the word LIVING.  These women and their families have such positive attitudes and they do not let anyone rain on their parades.  They are intelligent women who ask intelligent questions and they will keep fighting to beat cancer.  They will find the best clinical trial or the ‘right’ oncologist to work with to get into remission. Some are fighting for their 2nd, 3rd, and 4th remissions.  They are the most open, considerate, and generous people that I have met.

Ironically, getting outside my comfort zone and meeting cancer survivors has provided a great deal of comfort to me.   My goal is to continue to help women and provide support just like the women who have helped me.  Yes, we are statistics but we don’t let statistics define us. We will beat the odds!

Advocacy Day 2012

Boston Lunch Menu

Miss USA Olivia Culpo and me at the OCNA conference

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