Menopausing is Hard

Today, a photo from five years ago came up on my Facebook Memories.  Unfortunately, my first thought was a negative one. I didn't like how my nose looked in the photo.  My second thought was God, I wish I was that thin, how much have I gained since chemo was over? Pesky menopause had started immediately back in February of that year.  That bitch snuck up on me.  All of the sudden, what I could eat now caused (what it seemed) weight gain everywhere.  My hair was growing in, I could almost do a hairstyle with my new hair! My hormones were a mess, my skin had not looked this bad since I was fourteen.  My moods were all over the place. Mentally, I needed more support than I was willing to admit.  I was adjusting to menopause as a 40 year old who went through cancer three months before that picture was taken.  As women, why are we are own worst critic? 

Five years older, and more than five pounds later (a big FU to menopause), I feel better about myself.  Physically, I have owned this "After Cancer Body".  Some days are easier than others. Menopause still sucks-but I am wiser and stick to layered clothing.  Fans and AC are my friends.  I wonder how old my body must look on the inside.  Mentally, I still worry about recurrence.  I wouldn't say that that part gets easier, at least for me.  Intrusive thoughts enter my mind daily. It's more of a low voice, rather than a booming voice in my ear: You should be exercising, don't eat that! It could cause cancer! If you eat anymore, you'll have to work our three times as hard as a normal 45 year old!  I have been known to tell my spouse how tired he'd be if he were in my head.

That's enough for now, though.  I have a hot flash to tend to.  That cutie in the picture is my youngest at almost 4 years old.  

What Is a Clinical Trial?

 Clinical Trials.. what are they? Clinical trials are research based studies that people like YOU and I can volunteer to take part in.  They study a medical, surgical, or behavioral intervention for people.  When clinical trials are conducted, they are the safest way to find out about new treatments and ways to improve your health.  

I live in a suburb near Rochester, NY.  I am fortunate that there is a great teaching hospital here,  When I was sick, I didn't take part in a clinical trial.  I have researched a lot about them, and have read a few of them as well.  

Below is a link from the American Cancer Society about Clinical Trials.  

https://www.cancer.org/cancer/managing-cancer/making-treatment-decisions/clinical-trials.html

One thing that I assumed about clinical trials is that it is a last resort for patients with cancer.  That is not necessarily true.  In certain oncology practices, trials are offered to patients as a standard of care.  This means that patients in trials receive the same treatment as patients NOT enrolled in a clinical trial. The caveat is that patients in clinical trials also receive an piece of trial medication that is being tested.  

There are protocols with clinical research that your cancer care team has to follow when participating in a trial.  Enrolling in a clinical trial has it's benefits.  Not only are you helping scientists and oncologists further cancer research, but you are also receiving the newest treatment.  

God forbid, if my cancer comes back, I would be willing to try a clinical trial.  

What a Month!

Phew! September is Gynecological Cancers Month! MY MONTH to educate anyone and everyone about symptoms, risk factors, and types of gynecologic cancers.  

Team Victorious (the team that I created five years ago) raised over $1000 for Cancer Wellness Connections in Rochester, NY AND local gyn cancer research. 

Each year, my family has celebrated with me as part of my team. Each year, I meet more families who’ve lost a loved one to gynecologic cancer.  

It’s two hours of my life, every September that I’ll be surrounded by women who “get it”.  If you are in the Western NY area, hell, even Central NY area-please join me next year! It’s a time of reflection and a time for gratitude.  And it’s FUN!

The Significance of Five Years

I made it! Five years No Evidence of Disease.  The past five years have gone by so quickly, and other times heart achingly slow. With the help of PTSD, there are things that I can't remember going through due to cancer.  

One of the most important things that I have done with my experience is advocacy! And if you have read my blog, or know me personally, I am an open book.  Sharing my story helps me, and also (hopefully) helps others. I have inserted the link below from a local news station in Rochester, New York.  My friend who runs Cancer Wellness Connections and I were interviewed to raise awareness for gynecologic cancers-which is covered in September! I have inserted the link below, so please watch! 

If you also couldn't tell, I have anxiety, "scanxiety", and probably other types of anxiety that I am not even aware of (sometimes I use humor as a coping mechanism).  While I have "graduated" to seeing my oncologists twice a year, I am fortunate that I will still get lab work done every 3-4mo.  You know, because of my anxiety/fear of reoccurrence. Five years is significant in a cancer patient because it is a promising sign that your cancer and it's symptoms are undetectable-i.e. remission. 

  https://foxrochester.com/news/good-day-rochester/annual-5k-race-comes-back-to-raise-awareness-about-gynecologic-cancers (https://foxrochester.com/news/good-day-rochester/annual-5k-race-comes-back-to-raise-awareness-about-gynecologic-cancers)

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. 

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. 

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!