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.

 

Angelsong is an amazing experience

Going through cancer and chemotherapy leaves most people with some battle scars – both those you can see and those you cannot – and there is often a heightened sense of anxiety at times.  During my own journey,  I have explored all sorts of alternative therapies including diet, herbal supplements, yoga, meditation, and music.  All of them have been very positive experiences for me.  I am open to just about any alternative idea that does not involve hallucinations or drugs.  I also believe that people cross our paths for a reason.  I have met many wonderful people in the last couple of years and one of them is Amy Robbins-Wilson.  

She literally lights up a room when she walks in and has the ability to draw people towards her.  As I’ve gotten to know her, I’ve learned that she possesses two Master’s degrees, she is a Reiki Master and Awakener, and she has the voice of an angel.  One of the more fascinating aspects about her is that she performs Angelsong Sessions for individuals and Angelsong Circles for a group of people. Ah, and what is Angelsong, you ask?  According to Amy’s website (link is below), Angelsong is “a form of energetic singing that is a combination of live a capella-inspired song and healing techniques. Amy opens transformational space through music” to assist people experiencing stress, grief, loss, or those looking for a sense of balance.  She sings over the person/people and smooths out energetic auras.   No, this is not based on science as we know it and it may sound wacky to some.  However, I have been able to experience an Angelsong session firsthand it was unlike anything I have ever experienced.  

The session began when Amy sat me down in a chair that faced a window overlooking the beautiful outdoors.  I closed my eyes and she started singing and moving about the space.  I have no idea how long I sat there because I got lost in her voice and my own meditation.   Afterwards, I felt such a sense of healing and peace.  The best analogy I can draw is that it is a spiritual yoga.  When I do yoga, I am so focused on what I’m doing and on my own breath that I cannot think of anything else and when the class is over, I feel a sense of peace.  This is the same feeling I had during and after the Angelsong session.  No anxiety, no jitters, and surprisingly, the nearly constant pain in my chest where my port had been was gone.  I have a back injury that has gotten worse over the years.  After the Angelsong session was over, my back pain was nearly gone, too.  It’s been a few days and neither pain has not come back.  I still feel centered, peaceful, and feel that I have found another method of healing.   I know, I know….some may say it’s a placebo effect or this can’t really happen because it makes no sense in the scientific world. Whatever it is, IT IS REAL.  If you get the chance, I highly recommend trying one of these sessions.  It is perfect for new moms, cancer patients, those in hospice, or anyone who needs some healing and balance.  It is one of the best therapies I have experienced and if you keep an open mind, it can help you, too.   Check her out at Amy’s website and if you’d like to hear her angelic voice, check out  Amy sings “I Remember You.”

 

 

lake yoga

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!!

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Some tips on preparing food for a cancer patient

So you want to prepare some food for a cancer patient?  This can present some unique challenges if you have never been through chemo yourself. If you have been through it, this will likely be a refresher for you.  I am very much in favor of someone preparing some meals but it is very important to follow some guidelines.

1.) WASH ALL PRODUCE BEFORE CUTTING IT.  Chemotherapy compromises the immune system so it is vital that all produce be washed thoroughly before cutting it. It should be washed with a food-safe wash (a vinegar and water combination works very well).  If produce is cut first and then washed, then the bacteria on the outside has already been spread to the inside by way of the knife and it is much harder to clean.  Many oncologists discourage their patients from eating raw produce due to the difficulty in cleaning it properly.  Even if it’s going to be cooked, it is very important that the produce is properly cleaned.  If you purchased ‘triple washed’ produce, wash it again.  That stuff is usually washed in some type of bleaching chemicals. Also, do not use ingredients from any sort of buffet (e.g., salad bar, olive bar, etc.) in meals meant for a chemo patient.  The sanitation is a very real concern and it’s not worth the risk.

2.) Prepare smaller meals.  Chemotherapy wreaks havoc on one’s appetite.  It is recommended by many oncologists that patients eat more frequent but smaller meals.  This helps to provide energy and helps to stave off nausea.  Rather than preparing a big tray of lasagna, prepare a couple of smaller pans instead.  This way, the patient can heat up a smaller portion.  I recommend this even if the patient has family because chemo messes with the taste buds and it is likely that not everyone will eat the same food in the house at the same time.  In addition, fatigue sets in the more chemo a patient has and a smaller pan is easier to carry and maneuver.  Honestly, my last two cycles of chemo wore me out so much that I couldn’t even carry my laptop.  My son had to put it in the car and when I got to work, I had to request help from co-workers to carry it inside.  A big casserole or lasagna would not have been an option for me to move from the freezer to the oven.

3.) If the chemo has deadened the taste buds, go for texture.  I chose toasted pecans, almonds, walnuts, and granola.  This gave me some sense of being able to discern something while eating.  Make a batch of homemade granola and package it in small containers or baggies.  If texture isn’t appealing, it may be helpful to include some type of acidic drizzle on the side like a zippy vinaigrette.  I would drizzle a bit of vinegar on top of my soup or sautéed vegetables so that I could taste a smidge of something.

4.) Be careful with spices.  I grew up in San Antonio so I always liked spicy food.  However, during chemo, I had to tone it way down even though I had trouble tasting food.  Spices were hard on my stomach so you may want to tone down the curry and jalapeños.  You can get creative and instead of adding them to the food item itself, maybe make a cracker or biscuit with a bit of spice in it that can be served on the side.  This way,  the person can break off a piece and if it doesn’t sit well, the entire meal isn’t a waste.

Some other tips to keep in mind:

Label everything.  List the ingredients and how to prepare it (temperature, time, etc.).  Even if seems logical that chicken noodle casserole has chicken and noodles in it, there may be other ingredients in it that may be a concern to the patient over time like some spices or garlic or even milk (chemo makes it hard for some people to break down milk products).  For me, I couldn’t stand peanut butter or chocolate.  I didn’t have an allergy but I really could not stand the taste of either and I had loved both prior to chemo.  And even though I’ve made lasagna all my life, my lasagna may not be made the same way you would make it. Spell it all out and how to warm it/cook it/prepare it.  This will also allow the caregivers who are cooking-challenged as well the kids to be able to help.

Think outside the box for meals:

  • Make a soup but deconstruct it if needed.  For example, make a broth-based soup.  Cook pasta separately, drain, and drizzle with olive oil to keep it from sticking together.  Package the cooked pasta in a ziploc baggie, put the soup in a separate container, and have some crostini or croutons in another baggie. (I mention broth-based to reiterate that milk may be a problem for the person undergoing chemo.)
  • Make the fixins for a burger quesadilla.  Stay with me here because this is actually fun and tasty.  Cook up the ground meat and/or veggies (no need to make patties).  Shred some cheese, lettuce, tomatoes, etc.  Package the meat in one container, the toppings in another, and add a bag of tortillas.  All that needs to be done to prepare them is to warm up the meat/cooked veggies (the microwave will do just fine) and then load the tortilla with the ingredients, fold it in half, and cook it in a skillet on both sides until the cheese melts.  Everyone can fix it his/her own way.
  • Instead of making a big 3 lb meatloaf, make meatloaf muffins by cooking the meatloaf in muffin tins instead.  Make a batch of scalloped potatoes the same way.  Pop ’em out, put them on a baking sheet, and freeze as individuals.  They can then be placed in ziploc baggies and labeled accordingly.  Smaller portions are great and kids will love the smaller size, too.

Sweets are great in small doses. For me, I loved apple crisp because I could detect the slightest hint of cinnamon and the crunchy topping was great even though my taste buds were on the fritz thanks to Taxol.  Keep them small, e.g., smaller cookies or slices of pies/tarts. One of my gal pals made triple chocolate cookies with a cake mix and my son loved them so there’s no need to spend lots of time making things from scratch if that’s not your thing.

If you can afford it, please purchase organic and local food.  Organic is better for all of us and if it’s local, the food will be fresher and is oftentimes a much better quality than you will find in the big grocery stores.

Hydration and protein are very important.  Chemo is terrible on the kidneys and it also breaks down healthy cells so hydration and protein are important at every meal if possible.  Water tasted terrible to me but I found that a mild coconut water was tolerable.  If cooking isn’t your thing, buy some small boxes of coconut water or your patient’s beverage of choice.  Include some small protein-packed smoothies (Odwalla and Naked make some good ones) that can be kept in the refrigerator.

Lastly, I want to say how grateful I was to have food brought to my house. Several people pitched in and provided meals for us throughout my chemo  and having those meals ready to go with minimal prep was truly a blessing.  We preferred those to the heavily processed frozen foods in the grocery store.  Don’t ask for permission – just do it.  Whatever you decide to prepare or purchase will be very much appreciated by the patient and caregivers.

Charlie Brown

What they never told me

When I was diagnosed with ovarian cancer, I had the benefit (if you can call it that) of having seen every woman in my family battle breast cancer along with seeing my step-dad battle colon cancer.  Therefore, I was blessed with tons of support from family members who had been through it (some more than one time).  I was given tips and tricks for dealing with chemo, hair loss, foods to eat, etc.  I am also blessed by having the support of friends, co-workers, and my bosses as I near the end of my routine treatments. With any luck, I will stay in remission. However, there are things that I have learned during my journey and I’d like to share some of them in case anyone may benefit from them.

No one ever told me (in no particular order):

  • Some of my friends and family would distance themselves and while others I didn’t expect would be a source of support.
  • How unimportant some things are when my life was on the line.
  •  I would have a ‘front butt’ after tumor debulking surgery and that my belly button would be moved in the process.
  • My incision from the surgery would not heal right away and I would end up with a seroma.
  •  I would find a new use for maxi-pads when my seroma started gushing on a Saturday.
  •  I would teach oncology nurses and a resident how to ‘wick’ a seroma.
  •  Potential side effects of chemo included removing my ‘filter’ when I had something to say.
  • How nice it was to not have hair.  I could not have a ‘bad hair day.’ I went from 20 minute showers – shampoo, conditioner, shave, rinse out the conditioner – to being able to shower in 90 seconds flat.  I had no hair to style, no eyebrows to pluck, and no lashes to put mascara on so I had more time to sleep.
  • I would save money because I was not buying hair products.
  • I would look in the mirror and not recognize myself.
  • How really big my head is.
  • It’s o.k. to sleep at odd hours.
  • I could stay clear of negative people.
  • It’s o.k. to go to the store in my pajamas.
  • I could do things I want to do and not feel guilty.
  • Once I was in remission, people would stop calling me, emailing me, and asking me how I am doing.
  • Being diagnosed with late stage cancer doesn’t mean terminal cancer.
  • Being ‘sick and tired’ takes on a whole new meaning.
  • Losing energy and stamina so quickly when chemo started did not mean that it would come back as quickly.  In fact, it takes a very long time to return.
  • Complete strangers would pray for me.
  • I could sweat so much.
  • My fight against cancer would serve as inspiration to some people to eat healthier and to exercise.
  • I could have pain from numbness.
  • I’d be labeled for the rest of my life. My own PCP has the sphincter police answer his phone and I have to be assertive to get in for a regular visit.
  • About the kindness of strangers, random acts of kindness, & the power of prayer. I can truly feel those around me.
  • If there’s ‘a small chance’ of something unexpected that might happen, it would happen to me.
  • Some people stared & others made no eye contact when I wore a scarf.
  • It’s o.k. to ask for help.
  • I would go to a conference where I knew absolutely no one and leave with many friends.
  • I would go to Capitol Hill to speak with the staff of U.S. Senators and Congress to advocate for research dollars and awareness of ovarian cancer.
  • I would meet Miss U.S.A.
  • I would complete a half marathon exactly one year after my tumor debulking surgery.
  • Being on a dance floor with a boatload of cancer survivors belting out Gloria Gaynor’s “I Will Survive” would be one of my most-treasured memories.
  • There are no more bad days – there are now only good days and great days.  As far as I’m concerned, the only bad day I’ll have is the day the good Lord takes me to His home.
  • My teenage son would not be embarrassed to be around his bald mom and would also wear a teal ‘Fight Like A Girl’ t-shirt to school on my chemo days each week for 18 weeks straight.
  • My retired Navy sweetie would keep his head shaved in support of me, also wear a teal ‘Fight Like A Girl’ t-shirt on my chemo days, and be my biggest advocate.
  • I would start a blog – for myself as a form of therapy – and that it would be read around the world and help people.
  • I hadn’t truly lived until I realized I might not be around to see my son grow up.
  • I’m stronger than I knew.

These are just a few of the many things that I’ve learned.  If you are a survivor, I encourage you to share your thoughts here as well. We all have something to offer to help others who are on this journey with this insidious disease.

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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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