Tuesday, July 25, 2023

Supporting Team Victorious

 Hi All~

This is a shameless plug where I ask if you would like to contribute to my annual Gynecologic Cancers Walk. You may be thinking "why Team Victorious"? I am horrible at thinking of names for teams, groups, anything like that.  When I first found out about this organization and their annual fundraiser, I immediately wanted to join in.  I also liked the sense of meeting people that knew what I was going through.  Anyhow, the name for my team (Victorious) was created quite simply because my first name, "Nicole" means "Victory of the People", or it did in a baby book from 1978 that used to belong to my parents. And so, the team name was born (heh, get it?)!

 You can find the fundraising information here:

https://www.facebook.com/donate/203624899021745/10227780878780732/

Any amount helps! The monies raised go to Cancer Wellness Connections, which is based in Rochester, NY.  This organization is amazing, and helped me (and others patients) a lot during treatment-they provided Reiki Practitioner, chair massages, manicures, and  support groups for patients and caregivers, etc. 

Please email me if you have any questions regarding this walk OR Cancer Wellness Connections.  If you read this far, thank you for your support! It means a lot to me. 



Saturday, July 15, 2023

4.11years No Evidence of Disease

Lately, I have been feeling anxious and antsy.  My five year oncology check is next month.  I am EXTRA nervous.  I remember going through treatment and thinking that five years was so far away.  But it isn't. Or does it depend what is going on in your life at the moment that determines how fast time goes by? At my last check up in May, my oncologist wanted to talk about my "release from care" that would happen once I hit the five year mark.  I felt panic. Over the past five years, I had had at least 20 checks total? I had had so many, that I thought my sister was mistaken when she said she gets exams once a year. ONCE A YEAR? How can a person live like that? Then my mom brought me down to Earth with, "She's going for a normal check up. You aren't normal"-or something like that. 

I always knew I was special :) 

I had last posted about my time in Washington, DC and Cancer Policy Advocacy Team.  I actually just finished writing an essay about my experience there. If you are interested in making a difference,  if you know someone who is going through cancer, or is a caregiver to someone with cancer, a survivor, or a thriver, I would strongly encourage you to be a part of the National Coalition for Cancer Survivorship.  As Henry Rollins said, "Change is hard, but change is good".

Nicole Drost CPAT Symposium and Hill Day Testimonial

Being an Elevate Ambassador through the National Coalition for Cancer Survivorship is something that I would not have  thought of volunteering for before my cancer diagnosis.  Going through cancer treatment, I realized that change starts with me.  The NCC has given me the opportunity to grow as a person, reflect on where I want to be in the future, network in my community, and make new friends that happen to have been touched by cancer.  

This year, I was able to attend CPAT, which stands for Cancer Policy Advocacy Team.  To be surrounded by women and men who have been impacted by this horrible disease …the energy was contagious.  


During CPAT 2023, Elevate Ambassadors and CUPID program fellows went to Capitol Hill to speak of their cancer experiences in support of the Comprehensive Cancer Survivorship Act (s.2213).  Although most Senators were at Congress, we (my group) were able to meet Legislative Assistants from our respective districts.  It was an eye opening experience for me.  As a constituent, I would like to hope that our stories mattered to most that we met, and I was especially impressed by Congressman Morrelle, his staff, and guest speaker Senator Amy Klobuchar. Even though I knew that cancer had impacted Congressman Joe Morrelle personally, (I am one of his constituents, and followed his daughter on Facebook, where she chronicled her experience with her breast cancer diagnosis.  Unfortunately, she passed in August of 2017).  I wasn’t familiar with Senator Klobuchar’s cancer diagnosis.  


On the homefront, our town was able to put on an Independence Day parade, and I was able to chat with Congressman Morrelle about my personal experience with cancer, and how important the passing of the CCSA is crucial to cancer patients. In turn, he told me stories about his daughter, and also how he is working on getting Wilmont Cancer Center (where I was treated) to be a nationally recognized cancer center.  


One other presentation that impacted me was Beth Blakey, Director of  the Cancer Hope Network.  Their mission is to support cancer patients and caregivers by being matched up with a 1:1 Peer Support person who has had a similar cancer diagnosis to your own. While listening to Beth, Samantha Schrager (Director of Programs), and two volunteers from CHN, Claudio Pennunzi (who spoke about goal based hope, what wise hope teaches us, and the aspect of Ubuntu “I am because we are”, and Gregory Blake, a cancer survivor who gave us the perspective from the caregivers point of view. He spoke of the “quiver of arrows'' analogy.  Have knowledge, give support, be a lifeguard for others, have balance in your thought process (hope vs. reality), and hope; as caregivers, sometimes we don’t get the outcome we want; but we are survivors and will be a caregiver for someone else”.  At the conclusion of their presentation,  I realized that being a part of CHN would also help me reach my goal of  supporting others.  


A few days after I had gotten home from CPAT, I actually spoke with Samantha, and filled out forms to be a volunteer for Cancer Hope Network.   


CPAT was amazing because of the people! As I said above, the positivity in one room is electric! I loved reading the Advocate Biographies.  It was so interesting to read through others’ experiences-they are inspiring!  Even though this visit was brief, I learned a lot by getting involved in cancer policy and health advocacy.  For example, in high school I took Participation in Government, but honestly I didn’t pay attention as much as I should have.  Being an Elevate Ambassador for NCCS has broadened my perspective, and has made me realize that in order to make positive change in the world, I need to be a part of that change.  There is a lot at stake when people don’t pay attention to what is going on around them. The National Coalition for Cancer Survivorship gives those affected by cancer the support needed to help influence the world in a positive way so that change is possible. 






Tuesday, June 27, 2023

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!





















Tuesday, June 20, 2023

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. 


Wednesday, June 7, 2023

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? 








Tuesday, May 30, 2023

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!
        
    


Thursday, May 11, 2023

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





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