Lucky 13

chadheathcott.com

For me, 13 is a lucky number. I lived for over thirty years in a home with an address number of 13. And today, I celebrate writing this blog, all 1147 posts, over the past 13 years. 

As I approached this blogging anniversary I admit I have been thinking that it may be time to stop blogging. There have been many times over the past year when I had writer's block. I just couldn't come up with an idea that I thought would interest my readers or provide any insight into living and surviving ovarian cancer. 

Being so many years out of treatment, I was starting to feel that my experience was no longer relevant to women who now have options to use Bevacizumab or Parp Inhibitors as maintenance therapies. I could read about the different types of therapies but I never took any maintenance therapy. This year women are struggled not only with a cancer diagnosis but having treatment during Covid -19.  I did go for my annual cancer center visit in September but my appointment was never delayed or impacted in any way by COVID 19. 

Then a few things happened. 

I have had the opportunity to speak to two women on a monthly basis since July as a Cancer Hope Network volunteer. (I've been a CHN volunteer for over 10 years now.) While I can't share their stories, I will share that when I called them last week to wish them a Merry Christmas,  one had good news because of good scan results while the other had not such good news.  Yet both were glad I called so they could share their news. Both thanked me for listening and being available to answer their questions.

Then a women diagnosed with ovarian cancer reached out to me via direct message on Twitter. I answered a few of her questions and said I have written a blog for a number of years if she would like to read it and shared the link with her.  A few days later I got another DM from her and she commented on how reading a few posts were so helpful.

Lastly,  a fellow cancer advocate commented on my previous post "Stay the Course". She said "So often we think we have to do something huge or make sweeping changes. Sometimes, "staying the course" is enough. " 

So I will do just that.  I will stay the course and continue to write this blog in the hopes that I reach just one woman.

May all my readers have a Happy and Healthy and Safe 2021 !

Dee

Every Day is a Blessing.

Reflections

2020 was a different type of year that is for sure. The last trip I took was to Houston in January to give a talk at the NRG Semi-Annual Meeting. So many other meetings that should have been in person, Chicago, Washington DC, Rhode Island and others became virtual due to Covid-19. Family vacations were cancelled and our home was the safe place to be.

As I decorated the Christmas tree with ornaments from past travels, the memories provided me a way of revisiting each and every location.  Enjoy this short trip to just a few of the places I've been lucky enough to visit as my Holiday Gift to you. 

Zion National Park

San Francisco

Muir Woods

Mount Vernon

Mt Rushmore

Kansas

Yellowstone National Park

DisneyWorld

North Carolina

New Zealand

Alaska

Badlands National Park

Australia

Portugal

May this holiday season bring you good memories, joy and hope for the future. 

 Dee

Every Day is a Blessing! 

Stay the Course

 A few years ago, shortly after moving into my community I took part in an art class with Dar James, artist and book illustrator.  She taught us a painting technique and set us free to be creative. When we finished the painting, she asked us to come up with a thought or mantra we could write on the painting. I was about 3 years out from my ovarian cancer recurrence. At the time, I was anxious about another recurrence. I was nervous about every time my abdomen felt uncomfortable or I felt full or I had a headache. A wise person told me that if I am doing everything I can - exercising, eating well  and going to my follow-up doctor's appointments I am doing my best. So to remind myself to keep doing what I need to stay healthy, I chose the phrase, "Stay the Course". 

I was looking at the painting the other day and I realized that "Stay the Course"  is still appropriate for many reasons. I've continued to try my best to stay healthy. I walk, do yoga and Jazzercise and try to eat healthy.  I saw my dermatologist in June.  My appointment with my advance practice nurse at my cancer center was in September, when I also had my CA-125 check. I saw my eye doctor in October along with having my annual mammogram. And I recently had my annual wellness check-up with my PCP.

But this year I needed to do more. I need to stay the course until I receive a vaccine for Covid-19. And yes, I have read the study results from the Pfizer vaccine trial and have read about how the vaccine is made and the various components. I was actually happy to see lipid nanoparticles being use since I had spoken to a researcher at ASCO in  2019 about using those particles to deliver cancer treatments .  Even having had an anaphylactic reaction to carboplatin, I am comfortable taking the vaccine. I know that in this day an age where we get packages overnight and can find information at our fingertips waiting is not easy. But I will have to stay the course a bit longer.

So in the mean time, I will continue to wear a mask. I actually have masks in assorted colors and styles to choose from. I will continue to carry hand sanitizer with me and I will continue to wash my hands more frequently while avoiding touching my eyes and face. I will continue to avoid large crowds - even if the group is outside. If I am in a store I will continue to change directions to avoid people who may be closer than six feet.  I will continue to avoid eating inside at restaurants.

 I'll share my experience with you when I actually am able to get the vaccine. But in the mean time, I hope you will stay the course with me.

 

Dee

Every Day is a Blessing!

 

Thankful

In years past we have traveled to spend time with family and friends on Thanksgiving. We've celebrated  in Georgia, Alabama, Virginia and Kentucky. And last year, we hosted dinner in our home.Oh how I enjoy the smell of turkey roasting in the oven.

This year we had planned to gather in DisneyWorld and celebrate the holiday with our daughter and son and their families.  But with the risk of Covid 19 high and quarantine restrictions in place, staying home is the best choice for us. This year will be different for sure. Just Nick and I and the dogs intensely watching us eat turkey and stuffing and sweet potatoes.  When I was in cancer treatment and unable to make a lot of the family gatherings, I was sad but I made it through. I expect we will all make it work from a distance this year too. And I know when we do get together and give each other hugs, it will be wonderful! 

Covid has changed a lot in 2020 - no hugs, no house visitors, no trips to far away places.  But the one thing Covid-19 can not change is how much I am thankful for this year.

My husband - My rock, best friend and a wonderful caregiver.

My daughter, son-in-law and grandsons -  You make me smile even though you live half way around the world.  It was a blessing for you to stay with us for 5 months earlier this year (Thanks to Covid19.).

My son and daughter-in-law - You are amazing. Without hesitation you opened your hearts and home to another dog, Ziti, who found you as she wandered through your neighborhood. She may miss her puppies but she has a whole new wonderful family. 

Family members and friends too numerous to mention by name. Your love and support  - phone calls and texts - are a blessing to me.

My fellow cancer survivors and advocates - You inspire me and together we can make a difference in the lives of cancer patients and survivors.

My dog, Amber - She is always ready to share her unconditional love and loves to jump and weave. Walter, the pug -You can make me smile just by the tilt of your head. 

Skype, Zoom, Facebook Messenger -  Platforms that allow us in numerous states and around the world to spend some time together this holiday.

And as with every year for the past fifteen, I am especially thankful for...

the doctors, nurses and social workers at Rutgers Cancer Institute of NJ. I would not be writing this if not for the excellent care you provided and continue to provide me. 

 

 

I will end this post as I usually do - Every Day is a Blessing!

Dee

 

 

 

Catching Up On All Things Advocacy

Well, were did the time go? It is over a month since my last blog post. I'm OK and plugging along.

It appears that being home most of the time - trying to reduce my risk of COVID -19 has not meant  less advocacy work. In fact,  I think that I am busier than normal. I had to turn down two projects for November and December so I don't fall behind in projects I have already committed to. 

I had a pretty good September which is Ovarian Cancer Awareness Month. I formed a team to walk for the Kaleidoscope Of Hope Ovarian Cancer Foundation and raise funds for ovarian cancer research, virtually of course. My daughter and niece, joined me as members of team Quarantine Fifteen. I chose that name because I celebrated 15 years as an ovarian cancer survivor this year and 2020 is the year of the COVID-19 quarantine. We raised over $500. I walked my 5K with two other survivors at a park in Allentown, NJ. How I wish we could have been on the boardwalk in Bradley Beach looking out at the ocean.Hoping next year will have us back at the Jersey Shore.

For the first time ever, I was able to attend the OCRA Ovarian Cancer Conference (Sept 29-Oct 2). It was virtual this year due to COVID-19 but I still had a great time and learned new information.  I was so excited to spend some time with my survivor friends. A group of us - many who had been ACOR listserve users - all met one morning of the conference in the virtual lobby to catch up and present the Big Girl Panty award.  

Here are three examples of the excellent presentations from the Conference.

Learning about rare ovarian cancer from Dr  Gershenson

Learning about PARP inhibitors from Dr . Matulonis

Racial Disparities in Ovarian Cancer with Dr Khabele

On October 16th I took part in the online celebration of the Cure Ovarian Cancer Heroes Award. I was so excited to celebrate with two advocates I have know for a number of years and a researcher I had met at the ASCO Annual Meeting.

Andrea is an amazing advocate and survivor helping women through the @SHAREing hot line. This OC survivor is thankful for all she does. Thank you @Herzbuk for mentioning the gyn oncs who mean so much to you. @cure_magazine OC Heros. #gyncsm pic.twitter.com/qOd31Z6hjA

— Dee Sparacio (@womenofteal) October 16, 2020

Congrats Dr Deborah Zajchowski @ClearityFnd honoree at @cure_magazine 's OC Heroes Celebration.I remember the time she took to answer my questions during a poster session at an ASCO meeting a few years ago.Thx Dr Deb for helping women find their best treatment options #gyncsm pic.twitter.com/vPgjV5Qxng

— Dee Sparacio (@womenofteal) October 16, 2020

“No matter when you engage with @RobinSCohen, you quickly discover she is 100% present in the moment with you,” – Susan Leighton of @ocrahope #OvarianCancerHeroes pic.twitter.com/w8uPHT0NjN

— CURE Magazine (@cure_magazine) October 16, 2020

 Congratulations, Andrea, Robin and Dr Deb.

 I rounded out October with two Scientific Review Board meetings, an ASCO Clinical Practice Guideline Committee meeting, a Cancer Community Advocacy Board , a planning meeting for a great November 11th #gyncsm chat on PARP inhibitors and an invitation ( which I accepted) to be on the advisory board of an NCI trial on understanding and reducing racial  disparities in ovarian cancer treatment and survival.  

Over the past few months I have become pretty adept at taking part in discussions on WebX platforms as well as Zoom but I really would love to be able to give some in-person hugs.

Stay well and enjoy the color of the world around you.

Dee

Every Day is a blessing!

OC Awareness Month and Memories

This September seems to be flying by. It is hard to believe that we are already at day 10 of Ovarian Cancer Awareness Month.

In the past, I would post almost every day about symptoms, types of ovarian cancers, genetic mutations in ovarian cancer, treatments, awareness organizations, and fundraisers. This year since I missed 10 days already, I will shoot for 4 - one per week.

This year is different in so many ways due to the COVID -19 pandemic. Educational events are postponed, cancelled or offered online. Fundraising events involving large crowds are not taking place. Instead there are banquets and auctions on Zoom. Walks, runs and rides to raise funds for research are all virtual.  I won't be walking with family and friends on the boardwalk to support research through the Kaleidoscope of Hope Ovarian Cancer Foundation. Instead I will be walking by myself, mask on, around my town on Saturday, September 26th.

While we don't yet have a screening test for ovarian cancer, I am happy to see some progress being made in treatments for women with ovarian cancer using PARP inhibitors. I am excited to see teal ribbons in towns in every state in the nation. (Teal is the awareness color of ovarian cancer.) I love to see photos of buildings and bridges outlined in teal lights. Survivors and their families are doing their best to raise funds and awareness of the disease by painting their nails and toes teal, wearing teal ribbon pins and earrings and teal t-shirts and tying teal ribbons around trees and lightposts.

To be honest with you though as much as this month makes me smile with all the teal and fundraising but it also makes me sad. Over the past fifteen years, friendships with many women who were also ovarian cancer survivors came easy. We met at in-person support groups or on Facebook or Twitter or the old ACOR listserv. We volunteered to serve on Boards of local OC awareness organizations. We sat at the same table at fundraising events and would hang awareness ribbons. Many of my friend's lives were cut short due to ovarian cancer, taken too soon from their families and their communities. Janice Lopez is one of those teal women . 

Sparacio and Lopez Families

Our families would gather together in late August to hang teal ribbons in Edison, NJ. We were both diagnosed in 2005 with similar symptoms. We sported our short haircuts together as we hung ribbons back in 2008. But on September 6th, eleven years ago ovarian cancer took her from her family. To honor her they formed the Janice Lopez Ovarian Cancer Foundation. They continue to raise funds for research  and I continue to support their mission.

This year Elie, (in the stroller in the photo) Janice's granddaughter created a PSA for her family's Foundation. Please take a moment to watch. 

I urge you to support ovarian cancer research this month. You can make a difference and save women's lives.

Dee

Every Day is a Blessing!

Power outages, Goodbyes and Looking Ahead

Where did August go? 

Day 5 - working on power lines.

 

During the first week of the month we had a power outage for five days due to tropical storm Isaias. We had no electric, no internet, no landline, no cable and were missing a number of shingles off the peak of our home. Cell phone use was off and on until they installed a generator on the cell tower not far from our home. We tried to be creative making meals on our gas stove to use up all the frozen food which was thawing. To be safe though on the fifth day we still threw out a large bag of food. We spent time conserving the charge on our phones and were happy to have fully charged power backups at the start of the outage. Cold showers were not fun. But sitting outside at sunset when the fireflies came out was pretty awesome. My grandson made up a song about the fireflies and he added to the song each night. The iPads and computers were off, low on power, but no electric was needed to play a rousing game of  Crazy 8's by camping lantern. 

The second week of August was a busy time playing catch up. We were doing things we could not do during the outage : laundry, food shopping, vacuuming and catching up with online work. I got a chance to prep and participate in the August #gyncsm chat on Endometrial Cancer.

The third week of August was a time to say goodbye to my daughter and grandsons. Due to COVID-19, they traveled to the US in late March from their overseas home. During the time they were here, The international school they attend offered remote learning. So the boys spent 5 days each week ( Sunday - Thursday, due to the time difference) doing school work. I enjoyed helping them with their work, learned to use See-Saw and happily took photos and videos for them to send to their teachers. But we also  had time to play, pick strawberries, cook together, build with Legos, draw and paint. It was tough to see them leave but I am happy they are back home with their Dad.

During the latter part of August, I spoke to ovarian cancer patients as a volunteer with Cancer Hope Network, attended two of my cancer centers online webex Scientific Review Board meetings and also had a zoom call with some ovarian cancer survivors. It was so nice to hear and see these women. They are more than ovarian cancer survivors and advocates, these women are my friends, some for over 10 years.

Today I am looking ahead to next month, National Gynecologic Cancer Awareness Month. I  signed up for the OCRA's Ovarian Cancer National Conference which will be held virtually September 29, 2020 - October 2nd. Past conferences have conflicted with vacations and other events so this conferencewill be my first one and I am very excited to attend.

Christina Lizaso and I are busy planning this month's #gyncsm chat on Rare Gynecologic cancers which will be held at 9pm ET on September 9th on Twitter. Did you know that there are different types of ovarian cancer? Do you know how vulvar, vaginal or GTD are treated? Be sure to check our blog for information on how to take part in Twitter Chats. 

I also registered for this year's virtual Kaleidoscope of Hope Ovarian Cancer Foundation Walk. I have been raising funds for ovarian cancer research by taking part in a KOH walk for over 10 years. Support my efforts with KOH a or find a local ovarian cancer walk to help researchers find a screening test and better treatments for ovarian cancer.

This month threw a few curve balls my way but things in the end all worked out. See you in September!

Dee

Every Day is a Blessing!