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to nursing students as a part of the Survivors Teaching Students ® program to help change the medical profession’s outdated views on ovarian cancer.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

%d bloggers like this: