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

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

If I can do it, so can you

In the mid-90s (March 1995 to be exact), I was in my local big-box book store and I saw Oprah on the cover of Runner’s World. It said, “Oprah can do it, so can you!”  I bought the magazine – for the first time ever – and learned about her marathon training program.  Because of this article, I started running for fun.  I entered 5Ks and 10Ks and even ran a leg of the White Rock Marathon with my employer’s team.  I never ran to win the race but I enjoyed the camaraderie of the sport.  I also found that the more I ran, the more I enjoyed the longer distances.  Eventually (a few years later), I decided that if Oprah can do it, I could, too. I really wanted to complete a marathon!  To me, the marathon seemed to be a goal that a lot of people had but they didn’t really try for it or they didn’t stick to a training program so it was an unattainable goal for them. I wanted to reach that goal and earn a finisher’s medal.

So I’d made the decision that I wanted to complete 26.2 miles.  TWENTY-SIX POINT TWO MILES.  BY FOOT.  No car, no bike.  All 26.2 miles under my own power in a pair of sneakers.  What now?  How do I DO this, I thought?  I did a little research and I signed up for former Olympian Jeff Galloway’s training program.   The people in this program were an eclectic group of folks who came from varied backgrounds – there was a podiatrist (who became quite the expert that we all called on), elite runners, retired grandparents, and working moms and dads like me.  Jeff’s program is a run/walk program and I had my own individual program all outlined for me to work on during the week and then we all got together for the long slow distance runs on the weekends.  I lived in Texas at the time and no matter what time of year it was, it was bloody hot to run.  Either that, or it poured down rain.  There really was no “nice” weather.  But I loved the idea of working towards my goal of completing a marathon.

After signing up for the 6-month program, I was grouped with the grandmas who’d never run a marathon.  I was a new mom but I was o.k. with being with the grammies since I didn’t have a time goal – my only goal was to finish.  I learned quickly that I would need to be self-motivated and disciplined to work the program that was laid out for me.  Honestly, it looked easy on paper and in the grand scheme of things, it was easy as long as I followed it.  My favorite part was the long slow distance runs.  I learned a lot about the lives of these strong women.  Some were old-fashioned and had never worked.  One these ladies wouldn’t make a single decision (I’m not even sure she knew that might even be an option) – she deferred everything to her husband who was also training but he was in a ‘faster’ group.  Another one was a widow and had raised her kids on her own.   And another lady – 75 years young – was training for a half marathon rather than the full marathon.

These ladies all inspired me and I looked forward to our weekly runs because since the long slow distance runs were at a slower pace, we could carry on conversations.  This training took place in what was the height of the ‘Furby’ craze so I got to hear about how each grandma was going to have THE favorite gift for the Christmas season (apparently the black-and-white ones were the prized ones to have way-back-when).   As a new mom, I would never ever consider such a gift for my kiddo but I learned all sorts of tidbits about patience and choosing my battles during my journey through parenthood from this ladies.

What I found with the training was that there would be easier days like the tempo runs and tougher days like hill training. OK, let’s be real….where I lived in Texas, there were not many hills but we managed.  If I was careful and didn’t overtrain, I could stay on target and not get injured.  Jeff’s program suited me perfectly because his philosophy with the long slow distances is to keep pushing ‘the wall’ back – each week, gradually increase the distance.  And each week I did.  Each week I was able to go farther and farther and my self-confidence grew with each passing week.  We all entered the White Rock Half Marathon for a training run (we were scheduled to do 16 miles that day so we started with a 1 1/2 mile warm-up and continued after the half for another  1 1/2 miles).

Jeff came to a few of our training runs and critiqued our running styles, made corrections as necessary, and offered an immense amount of knowledge and support to us. I remember after our 24-mile run, he was snacking on a Snickers bar.  Before anyone could criticize him, he said with a sincere smile on his face, “As far as I’m concerned, if you complete 24 miles, you can eat anything you want.”  As a Snickers fan, I heartily grabbed one, too, because as far as I was concerned, I couldn’t believe I’d just done 24 miles and there was no doubt in my mind that I would finish my marathon now.  What a mental high that was for me and such a boost to my self-confidence.  I was an athlete who was about to enter and complete a marathon.  That’s right….I, with the silhouette of a penguin, was finally an athlete.

Through the course of the training program, I also learned that training for a marathon is a lot like life – there will be tough hills to climb and obstacles, but with patience, consistency, and perseverance, I can always reach my goal. I had tons of support around me and the people who’d run marathons previously were very generous in sharing their expertise.  If that left brain kicks in and takes over, most people will reach the logical conclusion that paying money for a marathon entry fee and then actually choosing to go the distance is a bit wacko.  However, once the entry fee was paid, I committed myself to showing up.  As I lined up at the start (in the back, of course, because I’m a back-of-the-packer), I was nervous.  I wasn’t nervous about finishing because I’d already completed the distance a few weeks earlier when I completed the Galloway program.  I was nervous because this was IT – I was finally going to reach my goal and earn that finisher’s medal.  All the work, all the training…I kept telling myself, “Just trust the training.  You can do this.”  

It took me some time but I did finish my marathon.  Not only that, I did it again four more times.  That’s right – I’ve entered and completed five marathons.  So when I was diagnosed with cancer, I was consistently told that I was doing “so well” with the surgeries and chemo.  I didn’t know why people were telling me that and one night, I was chatting with my best friend about this.  She said to me, “You’re a marathoner.  You know about the long race.  You know about consistency and perseverance and most of all, you know about finishing.  You have your goal here.  You want to beat cancer. You want to see your son grow up.  You will do it because you already have the training inside of you.”  I sat back and said, “OK, if you say so.”  

The more I thought about it, the more I figured she was right.  Marathons are much more mental than physical. The fight to beat cancer is very mental – if chemo gets a hold of a negative thought, it will run away with it and that can be a dark hole that is hard to be pulled out of.  So I went into marathon-training-mental-mode and made it through chemo relatively unscathed.  In March, I was told I was in remission.  I was thrilled. When I went into remission, I signed myself up for a half marathon. I signed up for the very one that I had to pull out of last year a week before the race due to being diagnosed with cancer.  I wanted that finisher’s medal that I was unable to get last year.

The chemo has lasting effects and it’s taken me quite a while to develop any sort of physical stamina.  I am getting stronger each day and I’m proud of myself with each new accomplishment. A year ago yesterday, I was on an operating table having tumor debulking surgery and was staged with late-stage ovarian cancer.  Yesterday, exactly one year later, I was lined up at the start line for the Bar Harbor Half Marathon (my favorite race of all – I’ve done it many times) in my Fight Like A Girl shirt, the shirt I wore to every single chemo treatment.   Just like my battle with cancer, this was a family event.  My sweetie also entered the half marathon and my son entered the 5K.

I started the race early with the walkers (the runners started an hour later) and met up with a beautiful 85-year old woman who said she was “as slow as molasses” and I told her, “I doubt that.  You’re looking strong to me.”  I got passed during mile 5 by the first runner who wore nothing but his Under Armor compression shorts and sneakers.  His number was pinned to his hip because there was not another stitch of clothing on him. A few minutes later, another gentleman and the first woman zoomed past me.  Runners continued to catch up and pass me for the next few miles but I didn’t care.  I was doing my own race.  This wasn’t a competition for me.  This was a day of celebration in how far I’ve come in the last year.

On the dreaded mile-long climb in the middle of the race (I still haven’t gotten over my phobia of hills), some friends of mine who were running the race came from behind and said hello and asked how I was doing.  I said I was doing great – and I was – and they continued on.  Every volunteer shouted, “I LOVE YOUR SHIRT!” and I got applause from volunteers and runners who passed me and said, “Keep going!”  My sweetie, who started with the runners, caught up and I heard him holler from behind me. We crossed the 9-mile marker together and then he zoomed ahead of me to finish his race.

At mile 11, a lady at the top of the hill said, “If this was easy, everyone would be doing it. You look fantastic!  Are you having a good half marathon?”  I said, “I’m having the best half marathon.  It’s sure beats where I was last year and I will finish no matter what.”  She gave me a thumbs-up and then I was joined by a wonderful lady who asked if she could walk with me part of the way.  Since I was the slow one, I had been by myself much of the race so I said she was most welcome to walk with me.  I learned that she lived in the area and she is a 22-year breast cancer survivor. We chatted for almost a mile and she hugged me before jumping off the course. I only had a little over a mile left and then I’d be at the finish line.

I was also joined by the ‘bike sweep’ who is a volunteer who stays with the last person in the race to ensure everyone is off the course so that the mile markers and water stops can be packed up and the wonderful volunteers can go home. He would have also radioed for transportation if I wanted to abandon but I didn’t.  I told him my story and I learned about his 72-lb weight loss over the last year and his journey to fitness. I was starving and he was so generous – he zoomed over to the golf course on his bike and bought me snacks and water to get me through the last mile.  I didn’t catch his name but I will never forget him.  My sweetie had already finished the race and came back to finish with me while my kiddo, who had completed his 5K earlier in the morning, took photos.

I walked every step of the half marathon since I’m still not up to running. Just like my battle with cancer, I never once thought about abandoning or quitting. Once again, I met incredibly generous people along this course who offered me tons of support just like people who have helped me through my battle with cancer.  Much like life itself, I saw everyone that passed by me has his or her own style of running.  Whatever that style is, it works for them.  They were smiling and they each finished the race. I waddled like a penguin across that finish line and I got my medal. I am still an athlete.  I covered the same distance as everyone else and I did it with my own style. I don’t care how long it took.  My goal has never been about time.  My goal has always been to finish. Thank you, Jeff Galloway.  Your training program has served me well over the years not only in completing marathons, but it has also helped me face my toughest battle yet.  I finished that battle and intend to keep it that way.

Whatever your goal is, don’t let anyone or anything stand in your way.  If I can do it, so can you.

Attitude really IS everything

These days when someone approaches me to ask how I’m doing, I always hear, “Your attitude is amazing.”  This is great to hear but it makes me wonder what other people’s attitudes are.  I am an honest person and will admit to fatigue but I’m happy about life and I’m happy to be back at work.  Since my diagnosis, I have taken the approach that I’m going to beat this dreaded disease. I’ve never wavered from this.  I tend to keep negative people and negative energy away from me so perhaps I’m in my own little naive world.  Or perhaps I come from a reality-driven world thanks to the incredibly strong women in my family.  Let’s back up a bit….

All the women on both sides of my family have battled breast cancer (most have had to do it twice) and won.  I have seen this for all of my adult life and I honestly don’t remember a time growing up where one of my grandmother’s didn’t manage to squeeze her breast cancer (pun intended!) into every conversation. She also managed to plan her death from the first time she was diagnosed and often spoke of that as well.   She was a 2-time 26-year breast cancer survivor so she was cancer-free during these conversations and although the conversations were a bit morbid, she taught me that it’s o.k. for women to know what cancer is and her 26-year survival example showed me that it wasn’t a death sentence even though she planned for it on a regular basis.  Although it probably tired most folks out hearing her talk about her breast cancer and subsequent recoveries, what she did for me was empower me.  Her own mother likely passed away from “a woman’s cancer” although it wasn’t talked about way-back-when.  My grandmother changed that by going COMPLETELY the other way but I’m o.k. with that.  The door of communication was open.  WIDE OPEN.

Because of my grandmother’s breast cancer and her daughter’s as well (my aunt), several members of that side of the family have been tested for the BRCA mutation.  Several of them have it and by deduction, my grandmother had it as well although I don’t know that she was ever tested.  We are able to trace it back a few generations due to the extension of the same mutation in the family.   Again, armed with the knowledge that there’s a mutation in the family, I was not afraid to be tested as well.  Because of my grandmother, I knew that for myself it would be better to know as much as possible.   I was never afraid of the results because I knew deep in my gut that I had it, too.

I learned in 2006 that I carry a BRCA1 mutation so ever since then, I’ve been screened every six months for breast cancer (mammograms and breast MRIs).  After my last mammogram this past July, I was chatting with my breast oncology nurse practitioner and she looked me in the eye and said, “I can monitor your breasts.  What concerns me is your ovaries.  Oftentimes, ovarian cancer can start in the fallopian tubes and that just doesn’t show up on ultrasound.”  This was an “ah-ha” moment for me.  I got a referral from my family doctor to see the gynecologic oncologist and I met with her about the possibility of removing the ovaries and tubes as a preventative measure because of the BRCA1 mutation.  One week later I woke up from surgery and she told me that I have ovarian cancer (I had no symptoms).  Had I not known I had the genetics for this and been vigilant about the breast exams for the last several years, I would not have had the nurse telling me that my ovaries concerned her.   I would still not know that I have ovarian cancer and by the time I did find out, my prognosis might not be as good as it is now.  This all leads back to my grandmother’s continuous babble about her own breast cancer. (In the end, it was ovarian cancer that took her life.)  At least she opened that door of communication for me and I’ll always be grateful to her for it.

The other side of the family has breast cancer as well but it’s not likely that there’s a mutation and no one has been tested.  The women are strong souls and all have beaten breast cancer.   With all the cancer in my family, I have never once heard, “Poor me” or “Why me?”  It’s certainly possible that all the women have uttered these words at some point but if they did, it was behind closed doors and it didn’t last long.  All the women in my family are strong women with strong personalities (both a blessing and a curse, I’m sure) who aren’t going to let a cancer diagnosis mess up their plans for long.  Which brings me back to the original topic:  Attitude is everything.

Last week, I was texting with my BFSB (Best Friend Since Birth) and I mentioned to her about people continually mentioning my positive attitude.  She wrote back that some people are probably still curled up and having pity parties while I’m not doing that.  This was an eye-opener for me.  I wrote back, “The women in my family don’t have pity parties.  They have the suck-it-up-and-deal-with-it parties.”  Honestly, that is such a true statement.  This is what I have always seen and I know no other way to handle a cancer diagnosis.  I will always be grateful to all the women in my family for showing me grace and strength while dealing with whatever life throws at them.

I will stay positive because I’m not ready to die.  While it’s true that I have all my legal stuff in order, I do not dwell on it.  I take comfort in knowing that my wishes are on paper and that frees up my energy to fight this disease.  Remaining positive also gives me energy to fight.  If I don’t stay positive, I might as well give up.  In my family, that is just not an option.  If I have anything to say about it, it never will be an option.

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