Learning to Listen

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

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

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

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

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

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

Seriously.

Not really.

Probably.

I’ve said enough…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2019 6 17 Listening to help

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

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

2016 8 31 Symptoms of OC

 

Advocacy Opportunity: Participating in the American Association for Cancer Research Scientist Survivor Program

As a recurrent ovarian cancer thriver/survivor who is still undergoing chemotherapy after being originally diagnosed almost eight years ago,  I have volunteered in various forms of advocacy including: 

  • Several opportunities with the Ovarian Cancer Research Alliance as an Advocate Leader in 2014 and 2019, as a presenter with Survivors Teaching Students® program, and as a research advocate. 
  • I have also been a consumer reviewer with the Department of Defense CDMRP Ovarian Cancer Research Program
  • I am a member of the National Coalition for Cancer Survivorship Cancer Policy & Advocacy Team
  • I participated in the American Association for Cancer Research Scientist <-> Survivor Program in 2015 and was selected again this year as a survivor advocate which was a great opportunity for me to continue to learn about research advocacy. 

This year’s American Association for Cancer Research (AACR) annual conference was held in Atlanta with more than 22,000 researchers, scientists,  advocates, and attendees. It focused largely patient-targeted therapies including genome sequencing and immunotherapy as well as clinical trials. The conference spanned five days of presentations and workshops. 

A bit about the history of the AACR and the Scientist<->Survivor Program:

  • “The AACR was founded in 1907 by a group of 11 physicians and scientists interested in research, “to further the investigation and spread the knowledge of cancer.” Today, the AACR accelerates progress toward the prevention and cure of cancer by promoting research, education, communication, and collaboration.” – from the aacr.org website 
  • The Scientist<->Survivor Program began in 1999.  “Through our program, survivor and patient advocates are able to develop stronger backgrounds in cancer research and related issues; keep abreast of recent advances in drug development and basic, clinical and translational cancer research; and be exposed to the knowledge and dedication of cancer scientists.” – from accr.org website.

Some details from year’s conference:

One of the main goals of participating in the Scientist<->Survivor Program is being assigned to small working groups to work on a particular question as it relates to cancer, research, precision medicine, etc.  Within each group are cancer survivors, patient advocates, and each group has at least one scientist who is available to help make sense out of all of the science/research lingo that is prevalent when so many researchers are gathered in one place to share information. At the end of the conference, each working group puts together a presentation to share with all of the other working groups participating in the program.  This project takes a lot of time yet it is fun to work together to find the answers throughout the conference whether it is from presentations, panels, posters, and/or the amazing availability of all of the exhibitors who have a lot of information that they are willing to share. 

As a participant in the Scientist-Survivor Program, we are required to present a poster during one of the advocate poster sessions. We had the opportunity to speak to people who stopped by to look at our posters and ask questions. My poster was about the decision-making process that a patient goes through when choosing to go into a clinical trial or not. I have participated in four clinical trials over the years since my original diagnosis so this topic is very close to my heart. Some of the details included in the poster were how to find clinical trials, how to navigate the details, financial considerations, and how to potentially stay eligible for more clinical trials. I had lots of researchers interested in my poster because accrual for clinical trials can be a challenge.  I enjoyed speaking with them about their challenges as well as sharing the challenges that patients face when trying to decide to go into a clinical trial or how to qualify for a clinical trial.  

Unfortunately, precision medicine and targeted therapies are not an option for all cancer patients due to the complexities of cancer as well as the complexities of each patient’s response to therapies.  There is still much work to be done yet what I witnessed at this conference is that researchers are sharing more information and using opportunities to collaborate to make as much progress as possible so that people can live longer after being diagnosed with cancer. They are also very interested in the patient perspective and are including them when designing research opportunities.

What I enjoyed the most, though, was meeting other cancer survivors and advocates from all over the world.  Within my working group, multiple cancers were represented including ovarian, brain, pediatric, lung, and breast with survivors and advocates from all over the United States as well as Canada and Kenya.  There is amazing strength and compassion throughout the world when it comes to cancer, new research, and the people it affects.

 

AACR.org

AACR Scientist<->Survivor Program Info

 

Atlanta, GA – The AACR 2019 Annual Meeting – Attendees during SSP Closing Session & Celebration at the American Association for Cancer Research Annual Meeting here today, Tuesday April 2, 2019. More than 20,000 physicians, researchers, health care professionals, cancer survivors and patient advocates are expected to attend the meeting at the Georgia World Congress Center. The Annual Meeting highlights the latest findings in all major areas of cancer research from basic through clinical and epidemiological studies. Photo by © AACR/Phil McCarten 2019 Contact Info: todd@medmeetingimages.com Keywords: Attendees – SSP Closing Session & Celebration

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

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