Celebrating 10 Years of the Cancer Policy Advocacy Team Symposium

 A whirlwind trip to Washington, DC for the National Coalition for Cancer Survivorship! It was my first time taking part in the Cancer Policy Advocacy Team.  I can't wait to attend next summer.  #CPAT23 Symposium was amazing.   I loved seeing my #ElevateAmbassadors again and meeting other cancer advocates! We had engaging discussions, and a few laughs along the way. Most importantly, we were there to advocate for the Comprehensive Cancer Survivorship Act (CCSA).  The Bill (S.2213) was introduced the day after CPAT.  Before cancer, I never would have even stepped foot in the House of Representatives or the Senate. We were able to listen to fellow cancer survivors, Rep. Debbie Wasserman-Schultz and Rep. Amy Klobuchar.   As a constituent of New York's 25th Congressional District, my gratitude goes to the office of Joe Morelle, It was an honor to advocate for the 18 million cancer survivors in the United States.  Enjoy the pictures! 

P.S. If you are (or know) of a cancer survivor or cancer thriver who is interested in being a part of cancer advocacy and wants to come along next year, please reach out!

Cancer Policy and Advocacy Team aka CPAT at Capitol Hill

 I am so excited to be attending the National Coalition for Cancer Survivorships Cancer Policy and Advocacy Team (CPAT) meetings on Capitol Hill in Washington, D.C. tomorrow!  It is a whirlwind trip, but the goal is to talk to our senators regarding the Comprehensive Cancer Survivorship Act. With this bill, people going through cancer will benefit in their own survivorship, treatment, and transition care.  Addressing these issues as a whole will improve and close the gap that many cancer patients face in treatment.

To learn more about this, I have inserted a link below.  Please take the time to read it if you or someone that you know has (or is) gone through cancer.

https://wassermanschultz.house.gov/uploadedfiles/the_comprehensive_cancer_survivorship_act_ccsa_one_pager.pdf

I can't wait to share pictures and all that I will be learning at CPAT on Hill Day. 

Cancer Survivors Day 2023

 Celebrating yourself during Cancer Survivor Week is awesome. What better way to spend money on self-care? I have added some chemo hair and new hair pictures for you to see. What did you do to celebrate? 

Survivorship

June 4 is National Cancer Survivors Day.  I had no idea this day even was a "thing" until I had gotten cancer.  I also didn't realize how many communities around the United States take part in this celeration.  I found out that you can actually look up any event for this specific day on www.ncsd.org. 

Last June, my Mom and I celebrated by going to my favorite restaurant, The Elephant and the Dove.  I highly recommend this place if you are visiting or passing through Skaneatles, NY.  It's also pronounced "skinny-atlas" (for those of you who aren't from Western NY). My Mom is a two time cancer survivor herself ;).  We shared our stories with an older couple and shared a pride flight :).  

"Survivorship" is a process (that at least for me) was filled with highs and some lows.  There is the ongoing care after your initial cancer treatment is completed:

        The high cost of medical bills, even with health insurance

        Denial of life insurance (that actually made me cry when that happened to me)

        The mental wear on worry of cancer returning

        The strain that survivorship puts on relationships with your family/friends

        The physical changes your body goes through

I was hyper-focused on beating cancer and relying on my multiple oncology appointments-then POOF! My treatment worked! Now the hard part was what life is like After Cancer.  Maintenance begins.  In my case, I had lab work and exams every three months.  Life goes on for everyone else, but I had such a hard time adjusting to NOT having multiple appointments.  I was afraid that I would get sick again (I don't think that ever goes away).  

Despite some of those stressors that survivorship can bring, there are obviously many more positives:

        I am alive!

        I try to be more present and live in the moment

        I know what is important in life now, and I don't sweat the small stuff

        I have made it a life mission to educate people on gynecologic cancers

        I share my story with others

        I realized instead of asking "why me", it really is "why not me?" because shitty stuff really does                 happen to anyone

        I am so fortunate to live in an area with wonderful doctors

        I am blessed to have the family and friends that I do; you are appreciated more than you know!

        

    

Women's Health Week!

Phew! I have been a busy woman! From work, home life, getting CA125 labs done, and having my oncology check up; I am officially 4.75 years cancer free! This week, May 14-21 is Women's Health Week.  It always begins on Mother's Day.  The goal of this week is for women and girls around the country to make their health a priority.  More information can be found at:  https://www.cdc.gov/women/nwhw/index.htm .

What are ways that you practice self care? 

I have to be honest, I started practicing self care when I started chemo treatments.  That's it.  Prior to cancer, I would do little things for myself here and there.  However, the actual act of taking care of my mental, physical, or spiritual health lead me to feel guilty because I wasn't home with my kids.  Gradually, I realized that I would be a better mom and wife if I took the time to take care of myself.

I will be practicing some self care next month!  I will be attending the CPAT Symposium in Washington, DC.  The National Coalition for Cancer Survivorship and Cancer Policy and Advocacy Team (CPAT)  gather together annually to discuss current issues, programs, and policies that are affecting quality cancer care in communities across the United States.  From what I have researched, attending the CPAT Symposium is a great way to network with Elevate Ambassadors, work alongside advocates, and learn more about cancer policy issues that could (or already do) effect cancer patients.  

"Communities and countries and ultimately the world are only as strong as the health of their women".-Michelle Obama

Patient Advocacy

 According to the National Patient Advocacy Foundation (https://www.npaf.org), patient advocacy can involve an individual or group of people.  Patient advocates believe that health care should be equitable for everyone.  They advocate for patients, survivors, and caregivers.  They can be a powerful force for change.

A couple of months ago, the Senior Director of Patient Advocacy at Genmab had contacted CEO Shelley Fuld Nasso, from the National Coalition for Cancer Survivorship (https://canceradvocacy.org) inquiring about endometrial cancer survivors for Genmab's Patient Advocacy Council.  Surprisingly (and I use that word because I still can't believe that she recommended me), I was mentioned as a possible candidate for their Patient Advocacy Council.  After sharing my cancer experience with the senior director, he offered me a spot on their council.  

Five years ago, I never would have pictured myself participating in these opportunities to educate and help other people going through a gynecologic cancer.  I am a little outside of my comfort zone, but I am very excited to share what is pertinent to cancer patient care, as well as learn about clinical trials and what could be possible for the future in survivorship.

Support Groups and Finding the Right Fit

In my last blog post, I had talked a lot about research studies being done on gynecologic cancers. Be sure to click on the link below if you know someone who has recently been diagnosed with a gynecological cancer. 

 https://www.blogger.com/blog/post/edit/7019961623740469661/251278343426145588

Support groups are crucial when going through cancer. According to https://www.cancer.net/coping-with-cancer/finding-social-support-and-information/support-groups support groups reduce stress. 

Just like trying anything new, you need to find the support group that is the best fit.  Are you looking for in person or online? Meeting daily or weekly? Attend with a caregiver or by yourself?  Hear me out...I know that support groups are not for everyone!  I am pro support groups because I enjoy interacting with people.  It is fair to say that I NEEDED to meet other women going through gynecologic cancer.  I needed to "see" proof that other women lived through treatment and continued to live long healthy lives.  Here is how I found mine.

My first support group that I tried was a Writers Group for those going through cancer. I figured that I enjoy writing, so why not? I was very nervous, but as introductions were made, I learned that all of the patients in this group were (or had gone through) breast cancer patients/survivors.  I could partially relate to some of their struggles, but left feeling discouraged.  I decided to give it another try the following week. 

I joined the group in a cozy chair, ready to put my feelings to paper when I heard an older woman animatedly flailing her arms about and sharing with us about how excited she was to babysit her grandkids.  It hit me..I didn't fit in with this particular group.  I wanted to live long enough to see my own kids get to middle school, much less babysit grandkids. 

The meeting concluded about an hour later.  I got into my car and cried most of the 20 minute drive home. I felt like I didn't fit in anywhere. I got pissed.  I was only 40.  What the fuck? Why was I having to deal with cancer at 40?  Why me? I spent the next day online.  I searched for support groups/gynecological/young women.  And thankfully, I found what I was looking for on Facebook. The Young Women with Endometrial/Uterine Cancer Support Group saved me!  I felt like I belonged.  These women GOT me! They understood my hysterectomy, my chemo meds, hot flashes, my fear, my lack of libido...everything. I fit.  I had found my Peach Sisters.