Tuesday, February 27, 2024

Caregivers

February 16 was awesome for two reasons this year.  It's my birthday, and I found out it was National Caregivers Day! Caregivers are an important part of getting through cancer.  They can be a loved one or a close friend(s).  They see us through the physical and mental rollercoaster that takes place at diagnosis and treatment, often helping with doctors appointments, grocery shopping, and other daily activities.  

My husband and my parents were my caregivers.  I was able to focus on myself so that I could get better.  Friends dropped off meals, took kids to school, sent uplifting cards, and would stop by to say hello.  A few of my favorite memories with my caregivers:

 1) Trying on crazy blonde wigs for me-yes, even my Dad! They looked hilarious.  

2)  Going in for my first wig fitting, crying when my Mom put a Dorothy Hamill wig on me and then laughing when the wig fitter said my Mom had an abnormally large head, and "with a head that size", she would have to put in a special order.  

3) My Mom following me to the bathroom on chemo day, "just in case" I needed help, and when I assured her that I could pee by myself, even with my IV's in and the damn awkward pole, I shut the bathroom door...only to hear her on the other side saying "I'm still here!", and 

4) B going to chemo with me just so we could be together to celebrate our 10th anniversary with cake for everyone on the chemo floor. 

While being a caregiver can be overwhelming and lonely at times, it is okay to take time for yourself!  Your physical and mental health are important, too.  For more information on the role of caregiving, please see the following links:

https://www.cancer.org/cancer/caregivers.html 

https://canceradvocacy.org/resources/ 

https://www.caregiveraction.org/











Sunday, February 4, 2024

World Cancer Day 2024

 

This day is for those who’s lives have been touched by cancer.  Unfortunately, all of us know at least one person affected by this beast.  Currently, there is not enough research being conducted on all cancers, and inequities in cancer diagnosis, care, and survivorship are growing.  

Cancer rates are increasing in young people-in fact, this week I read that colon cancer is on the rise in young adults in the United States! More research means more knowledge about cancer prevention, treatment, and survivorship.  The figure below lists ways that we can reduce the chances of cancer.  

I’m going to be honest. When I interpret this table, the I see myself saying “I don’t smoke, my weight is ok, I don’t drink much, I use sunscreen…”. I wish I had the answers as to why some people (unfortunately) go through cancer, and others don’t.  However, having gone through cancer, I do my best to prevent what I can from getting it again.  

Sunday, January 14, 2024

No One Talks About It

 I am super excited because I was part of the blog found here: https://www.noonetalksaboutit.com/

as a guest blogger under "The Big C".  I am also hoping to share my story in essay format in the near future.  I have a couple of things in the works that I am excited to share once things are finalized! Until then, please take a look at Carly Wooten's blog linked above.  I will add in my essay below about my cancer diagnosis. 

Over the past couple of days,  I have felt an undercurrent of anxiety in my bones.  Easily weeping at a Christmas movie-one in which the mother passes away when the main character was a child.  I quickly fumble the remote in my hands to turn off the television. Why the hell is it the Mom that always dies, almost every time? 

My cancer-versary is around the corner. January 2, 2018.  The worst thing that has happened to me (so far) in my 45 years on this earth. Once I was diagnosed with cancer, my life split into two in a matter of minutes.  Before Cancer and After Cancer. And if you know, you know.  Lucky us, right? 

No one talks about it. 

As concise as I can, some history, if you will.  Before Cancer-I had had my last child at 35, my OBGYN had tied my tubes. I was okay with this.  The doctor  had come to my room for a post check, and had said my “uterus was paper thin.” I remember thinking to myself “phew..it’s a good thing that I got my tubes tied!”.  She smiles, tells my husband and I that she ‘got her workout in by delivering our 10lb 11oz daughter.’ We laugh.  

Two years after the birth of my last child, I had voiced my concerns (I had intermittent periods) to my OBGYN. Two years of appointments to physically check what was going on and lab work. In November of 2017, my OBGYN came to the conclusion that I must be perimenopausal.  It was a little early for it, but it was possible.  “Nicole, you’re a Mom of three, you stay at home! Your periods are getting wonky from stress and anxiety.” 

Talk about gaslighting! We’re women! We’re supposed to support and listen to each other! I’m having severe periods that look like murder scenarios! I can’t leave my damn house for fear of leakage! But hey, she was the expert. I requested a hysterectomy, and she set me up with a gynecologist who specialized in menstrual disorders.  

December 21, 2017, I had a procedure called an endometrial resection.  This is when the endometrial lining is scraped and sent to the lab. I was confident when he assured me that my periods would be lighter.  I left my outpatient surgery high on fentanyl, yet relieved that things would get better. 

Spoiler alert! They did not. On January 2, 2018, my phone rang as I waited for my preschool students to enter my classroom. It was the actual doctor on the line. I remember thinking it couldn’t be good if he was calling me. He asked if I could come in later that afternoon. I replied that I was at work, but I could talk right now. He told me that they had found endometrial cancer on my resections that had been sent to pathology.  Trauma response was kicking in…I remember hearing doorbells ringing between ‘I have set you up with a gynecologic oncologist’ and looking behind me thinking ‘they have the wrong person, they have mixed me up with another patient.’ 

No one talks about the women under 45 who are diagnosed with gynecological cancer.  I know this because after genetic testing, no risk factors in an endometrial cancer diagnosis-a cancer that primarily affects postmenopausal women 60+, I am a fluke.  No one knows why I got this type of cancer. 

Four weeks after diagnosis, on February 6,  I underwent a total hysterectomy with bilateral salpingo-oophorectomy. Plus, I was dealing with bilateral pneumonia, and immediate menopause. Hot flashes from hell. Mood swings (as if I wasn’t enough of a bitch worrying about my upcoming cancer treatment).  I felt that I had no one TO talk about it with.  I researched A LOT-looking for local support groups for women my age with gynecologic cancer. Then I found support on Facebook-Young Women with Endometrial/Uterine Cancer Support Group.  This group saved me.  Women who understood what I was going through.  Women that I could share my fears with, and who lifted me up as I went through six rounds of chemo, three rounds of brachytherapy, and cope with life after treatment was complete. 

After Cancer.  Currently, I am 5.5 years ‘No Evidence of Disease'! I’m stronger than I ever had anticipated in my life.  Because of the growing number of young women getting diagnosed with gynecological cancer, I attend a local support group for those that have a gynecologic cancer diagnosis, sharing my story. Women should not go through cancer alone. I am an Elevate Ambassador for the National Coalition for Cancer Survivorship.  I have been on Capitol Hill advocating for cancer survivorship.  Advocacy is how we can change cancer treatment in the future, so the numbers decrease for those with gynecologic cancer.  Let’s start talking about it. 





Tuesday, January 2, 2024

Six

 Six years ago today, I was diagnosed with Endometrial Cancer. Going though treatment, I sobbed once to my radiation oncologist about feeling like an outsider.  I didn't fit in with my cancer free friends. I didn't fit in with the Breast Cancer Writing Group that I had tried out because a) they were of "Grandma age" and b) I wanted to live to see my kids graduate elementary school, I can't even get that far ahead of myself.  

Tonight, I attended a rising 9th grade to 10th grade meeting for my oldest.  I am not sure if it is because the date is triggering for me, but I sat there in the auditorium listening to everyone around me.  Parents that I am friends with, acquaintances with, those that I didn't know. And what the fuck. Everyone carbon copy, cut paste.  At that moment, it dawned on me why my oldest hated it.  Fake. Bullshit filler conversation.  I was triggered and I started to panic. My heart racing, cold sweat.  

This isn't going to come out right, so I will just say it.  Once you have been diagnosed with an illness, you weed out the bullshit. You realize what is important and crucial to you getting better.  Whether it is a spiritual awakening, come to Jesus moment, whatever. Collectively, "we" (meaning the patient) are on a different level of even Being. 

Fuck you,  January 2.  Cheers to January 3! 


Sunday, November 19, 2023

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.  

Thursday, October 12, 2023

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.  

Saturday, September 30, 2023

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!



Caregivers

February 16 was awesome for two reasons this year.  It's my birthday, and I found out it was National Caregivers Day! Caregivers are an ...