Thursday, September 10, 2020

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!

Saturday, August 29, 2020

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!

Wednesday, July 29, 2020

Pets and Painting From Diagnosis to Today - 15 years

As many of you know from reading this blog, on July 29, 2005 I was diagnosed with ovarian cancer.  I woke up from surgery and heard my gyn onc say the words, " I am sorry Dee, you have stage 3B ovarian cancer." Those words sent me down a road that I would have rather not gone down. A clinical trial consisting of nine carboplatin, taxol and selenium treatments followed that diagnosis. Then I faced more surgery and chemotherapy in 2008 when the cancer recurred on my liver and spleen. But somehow with faith, family, friends and treatments by the most talented, compassionate gynecologic oncologists, I am here today to celebrate my 15th Cancerversary. Thank you Drs. Rodriguez,  Gibbon and Song and the nursing staff at Rutgers Cancer Institute of NJ for the excellent care. 

During most of the fifteen  years of survivorship, I have had a dog. When I was first diagnosed, a pug named Kona greeted me when I got home from treatments and slept on the recliner with me, most times snoring more than I was. Sadly, he passed right after I had surgery for my recurrence.  At the time, I wasn't sure how I could get through my upcoming chemo without a pug on my lap.

After a year and a half later, both my husband and I knew the house was too quiet without a dog. So ten years ago, an All American dog, Amber entered our lives. She was full of energy and loved to jump. So Joe who owned the kennel where we took Amber for puppy training, suggested we train for dog agility.  That has been so  much fun these past few years . I learned something new and I met lots of other dog lovers. It was also an activity in which I totally forgot about my cancer. Amber has been by my side in the ring and on our long walks around town. I hope this continues for many years to come.

Another activity has grown over the past 15 years too. During my initial chemotherapy my son's friend gave me an acrylic paint kit.  I had stayed home while in chemotherapy when my blood counts were low, just like now during the COVID -19 pandemic. Painting helped me pass the time, took my mind off of the side effects and kept me calm as if I was meditating. I started with quilt designs ( I can't sew very well at all) , then some landscapes but I found I enjoy painting dogs the most - big dogs, small dogs, agility dogs and family pets. 

So on this my 15th Cancerversary, I share with you my love of dogs through the paintings I have created during these past fifteen years. 

Kona -a magnificent pug

McCoy -a Viszla


Winston

Coby

Silvio - my grandpup

Chick- an agility dog

Sassy- an agility dog

Princess - a Brittany Spaniel

Bling - an agility dog

Walter - my grandpup

Cooper - an agility dog

Ginger - Bull Mastiff
Gracie - agility dog

Smitten- agility dog
Tim - grand pup ( The only watercolor painting of a dog I have completed to date.)



Amber - my best friend and agility dog

Dee

Every Day is a Blessing!

Thursday, July 16, 2020

2020 Blogger Challenge

I am pleased to once again accept Nancy Stordahl's invitation to take part in her  Bloh Hop and  Challenge. 

Staying close to home - and enjoying picking local strawberries.
2020 Blog Challenge Questions:
1. Who are you? Tell us whatever you want about you and your blog.
I started blogging in 2007, two years after I was diagnosed with stage 3 ovarian cancer. I had a hard time finding information and support so I decided to start to write about my journey and share important information with other women diagnosed with ovarian cancer.

2. What has been your biggest blogging challenge during this pandemic, and how have you been tackling it (or trying to)?
I have only written 11 blog posts since March. I felt guilty writing about ovarian cancer news or personal posts when family, neighbors and friends were dealing with or worried about COVID-19.
It wasn’t until the virtual ASCO Annual meeting that I felt comfortable and I began writing again.  I was able to combine the two topics– COVID-19’s impact on cancer patients and survivors.  

3. What is something you’ve accomplished with your blog that you’re most proud of?
My blog opened doors for me. It led me to amazing opportunities as a patient advocate. Sharing my blog with a wider audience is what prompted me to  join Twitter ( @womenofteal) in 2012. It was the Twitter connection I made with Christina Lisazo  and some gyn oncs and a radiation oncologist that spearheaded the community for those impacted by gynecologic cancer with. Which led me to other advocacy oppo Christina and I created - #gyncsm (gyncsm.blogspot.com) . It also led to other opportunities – co-authoring a book, attending ASCO Annual Meetings and presenting at three medical conferences.

4. Share two of your best blogging tips.
First , it is ok to not click “post” as soon as you are done with writing. Save it, step away and come back to do some finishing touches. I do this because I have chemo brain. Many times, I am unable to find the right word so I usually leave blank spots and come back to it later.
Second, keep an ongoing list of interesting topics / writing prompts for just that time when you are struggling to find a good topic.

5. What is one of your blogging goals this year?
Review and update the pages on my blog.  

6. When things get hard, what keeps you blogging, even if not regularly?
Eventually a research study catches my eye or touches my soul and I say to myself – “You should share this.”

7. What is a dream you have for your blog?
My blog was a dream of mine, so I think it is more my dream of spending more time trying to explain my experience through art. I love to paint and sketch.

8. Share a link to a favorite post you’ve written that you want more people to read.
I wish more cancer patients, survivors caregivers would read about how to take part in Twitter communities and chats. There are so many awesome cancer communities ( #gyncsm , #btcm, bcsm, #lcsm, #ayacsm ) offering information , support and tips to their participants.

If you are a blogger - any  blog topic is acceptable why don't you join us.Check out how to take part in Nancy's post ( link above). And be sure to check out the other blogs in her list. 


Dee
Every Day is a Blessing!

Tuesday, June 30, 2020

iCARE -improving Communication about cancer Risk gEnes Project

Today I am sharing information about a new project at Rutgers Cancer Institute of NJ  to help understand how patients with BRCA mutations or Lynch Syndrome share their test results with family members.Check out the information below to find out how you can participate.




Many more patients are having genetic testing and it is important to provide information and tips on how to speak to family members about your results. 

Dee
Every Day is a Blessing ! 

Wednesday, June 10, 2020

"Your Caregiver Relationship Contract" - a Book Review

In January, I met with my fellow New Jerseyan, friend and caregiver consultant, Debra Hallisey. Debra founded AD-VO-CATE FOR MOM AND DAD, LLC and her website, https://advocateformomanddad.com/ has a wealth of information about various topics including finances, caregiving support and healthcare. As we ate, we discussed how our families were doing and the relationship that cancer caregivers have with their loved ones.

As we finished our meal Debra gave me a copy of her latest book, Your Caregiver Relationship Contract. I started to read the book and put it aside due to other commitments. Then the world became all things COVID -19. 

A few days ago I picked up the book again and finished reading it. What a helpful book! If you are a family member or friend taking care of an elder parent or relative this book can assist you in developing a contract and also in having those difficult conversations that come with being a caregiver. One point that Debra makes early on in the book when talking about making a contract is the need to "co-create" a contract that works for both you and your parent.

There are chapters that cover life changes, how this time can be an emotional journey, how to have those hard conversations, setting boundaries, asking for help and where to find support for yourself as a caregiver. At the end of each chapter there are exercises that help you put into practice what you learned in each chapter.

These following points stood out as I read the book.

Don't parent your parent.

The changes you may be asking your parent to make are emotional for you and for them.

Carees and caregivers alike must learn to ask for and say "yes" to help. 

You will also find a helpful list of resources at the end of the book.

If you are a caregiver for an elder parent or even if you are a caregiver of someone with a chronic illness Your Caregiver Relationship Contract is an excellent source of information. The book is available on Amazon https://www.amazon.com/Your-Caregiver-Relationship-Contract-expectations/dp/0578543834 .


Thanks Debra for providing me a copy and I look forward to another meal together in the not so distant future.
Dee
Every day is a blessing!



Monday, June 8, 2020

Symptoms/Survivorship and the Impact of COVID-19 on Cancer Patients at #ASCO20

This post will complete my series of posts sharing some of  what I learned during the #ASCO20 Virtual Annual Meeting. Survivorship and symptom management research have been two of the important topics that I have followed through the years at the ASCO annual meetings in addition to ovarian cancer research. Below, I have also included a few highlight Tweets from the session on the impact of COVID-19 on cancer patients and survivors.

Early Palliative Care

End of Life Conversations

Geriatric Assessments



Survivorship Session Summary

The Impact of COVID-19 on Cancer Patients 



 I look forward to seeing my advocate and researcher friends next year in Chicago.

Dee
Every Day is a Blessing!