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!

2020 Blogger Challenge

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

https://nancyspoint.com/calling-all-bloggers-blog-readers-its-a-summer-blog-hop/)

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.

http://womenofteal.blogspot.com/2019/02/a-2019-guide-to-twitter.html

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!

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 ! 

"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!

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

Early Palliative care -Leukemia
Improved anxiety / depression with sustained benefits and improved EOL discussions
Stockler #ASCO20 #PalliativeCare pic.twitter.com/0luN6noPXH

— Dee Sparacio (@womenofteal) May 30, 2020

Early trial palliative care -
Stockler #ASCO20
EArly palliative care can help some phase 1 participants#ASCO20 #palliativecare pic.twitter.com/LBDyWlfigS

— Dee Sparacio (@womenofteal) May 30, 2020

End of Life Conversations

EMR and Serious illness
Stockler
EMR nudges increased conversations
Single study - may not be able to generalized to others #ASCO20 #Conversations pic.twitter.com/A4arNp133p

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Assessments

Geriatric assessments- Stockler
Reduced G3-5 AE's
Supports @ASCO guidance for GA to be used #ASCO20
Feasible to do assessment
What are longer term effects? #ASCO20 #survivorship pic.twitter.com/0CeebgPDou

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric intervention Stockler
Reduced toxicity
Improved chemo toxicity recommended implementing as std of care. Requires a trained nurse practitioner. #survivorship #ASCO20 #geriatic pic.twitter.com/NEzRoMU9qW

— Dee Sparacio (@womenofteal) May 30, 2020

Geriatric Care to Reduce toxicity Stockler
Used QOL question
Early Treatment discontuation less
Less hospitalizations
Improved QOL #ASCO20 #geriatricancer pic.twitter.com/YAPCfKFZw4

— Dee Sparacio (@womenofteal) May 30, 2020

Survivorship Session Summary

Summary by Stockler -
Symptom and Survivorship
Good to see solutions are worth pursuing from early #PalliativeCare to the use of #geriatricassessment #ASCO20 pic.twitter.com/ukvIgjS26U

— Dee Sparacio (@womenofteal) May 30, 2020

The Impact of COVID-19 on Cancer Patients 

My first #ASCO20 watch party w/ #CCC19 friends.
Listening to Cancer & #COVID19 presentation by @NCIDirector. While trying to keep people safe from pandemic, we're creating issues w/ delayed/deferred care. What are long-term impacts at the population level but also at the N of 1? pic.twitter.com/5P54fN9AQP

— Stacey Tinianov (@coffeemommy) May 30, 2020

#ASCO20 @hemoncwarner presenting data from @COVID19nCCC - patients with #COVID19 and progressing cancer had more than a 5x higher mortality than patients with non-progressing cancer. pic.twitter.com/mnpC7AWc2s

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

Summary from @COVID19nCCC analysis of cancer patients with #COVID19 presented by @hemoncwarner. This data helps us better assess patients' risks & is important to have during shared decision making with our patients. #ASCO20 pic.twitter.com/XzgM7IJZXx

— Merry-Jennifer Markham, MD, FACP, FASCO (@DrMarkham) May 30, 2020

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

Dee
Every Day is a Blessing! 

Inspiration from #ASCO20

On this National Cancer Survivor's Day I am sharing two very inspiring speeches from the #ASCO20 Virtual Annual Meeting. One by Dr Skip Burris who was completing his year term as ASCO president and the other by Dr David Fajbenbaum, survivor, advocate and author of Chasing My Cure.

First some tweets from Dr Burris' speech.

Technology is being used to develop new medicines faster - the energy at Breakthough will continue .@ASCOPres #ASCO20

— Dee Sparacio (@womenofteal) May 30, 2020

@ASCOPres speaks about the importance of diversity moving forward. #Truth@ASCOPres #ASCO20 @OncoAlert @SarahCannonDocs pic.twitter.com/rRaVISF6lm

— Erika Hamilton, MD (@ErikaHamilton9) May 30, 2020

and we the people with cancer are right there with you. #StrongerTogether #ASCO20 @oncoalert #bcsm #lcsm #bsm #gyncsm #crcsm #melsm https://t.co/xCV3tpQu7j

— Dr. Kelly Shanahan (@stage4kelly) May 30, 2020

Then Dr  Fajbenbaum spoke.

Listening to Dr Fajgenbaum speak about his journey as caregiver , patient and advocate. Looking forward to reading his memoir. “Life is Precious “#ASCO20 #gyncsm pic.twitter.com/LaWJ7ZfUCd

— Dee Sparacio (@womenofteal) May 30, 2020

Uniting the five stakeholders-- caregivers, patients, clinicians, advocates, and researchers: key strategy for making progress against disease from @DavidFajgenbaum #ASCO20 pic.twitter.com/b09hGBHCrE

— Jamie Holloway, PhD (@jamienholloway) May 30, 2020

#gyncsm https://t.co/72q2I5Ryv9

— Dee Sparacio (@womenofteal) May 30, 2020

#ASCO20 Dr. @DavidFajgenbaum describes having his disease relapse on the last known treatment & fail to respond to the only drug in dev. Says the world's best expert on a disease only knows as much as the world itself knows. He had reached the far limit of the world's knowledge. pic.twitter.com/JyD4j6HREK

— Tatiana Prowell, MD (@tmprowell) May 30, 2020

Connecting Patients and reserach#ASCO20 #ChasingMyCure @DavidFajgenbaum #gyncsm pic.twitter.com/SuMZNcYE6N

— Dee Sparacio (@womenofteal) May 30, 2020

Hope #ASCO20 @DavidFajgenbaum #gyncsm pic.twitter.com/wucpBNBRdS

— Dee Sparacio (@womenofteal) May 30, 2020

"You have to bring everyone together." Thank you @DavidFajgenbaum for sharing your story with all of us.

#ASCO20 #gyncsm pic.twitter.com/zK6v8cfcCx

— Dee Sparacio (@womenofteal) May 30, 2020

As Dr  Fajbenbaum completed his talk I imagined what it would have been like hearing him talk while sitting in the packed large hall in McCormick.  I am sure his speech would have been interupted countless times by clapping. And I am also sure my head would have been nodding in agreement along with so many other advocates and researchers in the audience.

As an almost 15 year survivor of Stage 3 Ovarian Cancer I do have Hope that working together we canfind improved treatments and insure all patients receive the health care they need.

Dee
Every Day is a Blessing!

Disparity Research - #ASCO20 Virtual Annual Meeting

For the past year, I have been a member of Community Action Board at the Rutgers Cancer Institute. The Board advises the Center of Health Equity and Engagement led by Dr. Anita Kinney. The Center's role is to improve patient engagement for underserved and underrepresented communities in NJ in order to improve screening, prevention and access to treatment and clinical trials.

With that role in mind I took some time during the ASCO annual meeting to review studies related to cancer disparities. Here are just a few of the studies I viewed.

Uterine Cancer
Abstract 6089

#6089 Uterine cancer histology and stage at presentation in black & white women:
A cohort study of 488,000
Compared to white women black women are more likely to be dx with serous, clear cell,carcinosarcoma, leiomyosarcomas at adv stages #gyncsm #ASCO20 #OVCA #cancerdisparity

— Dee Sparacio (@womenofteal) May 29, 2020

Impact of Obesity Ovarian Cancer
e18067

"Obese patients were more likely to experience carboplatin under dosing in the neoadjuvant and adjuvant setting. No association with survival was observed for dose reduction and BMI #gyncsm #ASCO20 #OVCA #cancerdisparity 2/2

— Dee Sparacio (@womenofteal) May 29, 2020

Opiod Access / End Of Life Care 
Abstract 7005

Fleishman: Health Services Research and Quality Improvement Highlights #ASCO20
Racial / ethnic disparities in Opiod Access at EOL

Reducing implicit bias is still a challenge ; calls to pharmacy may help alleviate issue#cancerdisparity #Healthservices pic.twitter.com/Y5Kph11K5t

— Dee Sparacio (@womenofteal) May 31, 2020

Gender based disparities in clinical trials
Abstract # 2058

2/2
Of the trials lacking balance, the vast majority (80%) had under-representation of women.
Early phase > #disparity

future work: Why is there underrepresentation of women?
Is it time? child care issues? travel? Lots more to learn #ASCO20

— Dee Sparacio (@womenofteal) May 31, 2020

Survival outcomes by race minimally invasive versus open surgery
 Abstract #6029

Are outcomes better if open radical hysterectomy used?
Data from Nat Cancer Database-
Black women with open radical hysterectomy have lower survival than white women who had MIS . #ASCO20 #gyncsm #disparity 2/2

— Dee Sparacio (@womenofteal) May 31, 2020

Financial Toxicity
Abstract 6079

"The cohort of women with high #financialToxicity demonstrated higher mean scores on screening measures for depression and anxiety as well as persistently lower quality of life." #gyncsm #ASCO20 #ovariancancer https://t.co/J0EGQlyjRI pic.twitter.com/Yk8lq2DO4f

— Fumiko Ladd Chino, MD (@fumikochino) May 29, 2020

Geography and Cancer Care
Poster  1574
This study assessed overall survival (OS) of patients with all cancers, chronic myeloid leukemia (CML), and lung cancer while assessing distance from each county to the one (NCI-CC) in Georgia. Researchers conclude that disparity in cancer care exists between geographic conditions.

Black and white disparities in triple negative breast cancer ... Nurses’ Health Study
Poster 1655
This study examined disparities in triple negative breaset cancer by socioeconomic position, reporductive factors and diabete.  " observed racial differences in TNBC diagnoses may be at least partially mediated by differences in socioeconomic position and reproductive patterns, namely breastfeeding."

 
Breast and cervical cancer screening disparities among transgender patients
Poster 7024
About 1 million Americans identify as transgender. Limited primary care access and poor adherence to breast and cervical cancer screening are evident for transgender populations.

I look forward to next year's annual meeting whose theme was announce by incoming ASCO President , Dr Lori Pierce. 

I’ve been interested throughout my whole career in how to best create #equity in cancer care for all patients. So, I'm excited to introduce my @ASCO presidential theme, Equity: Every Patient. Every Day. Everywhere. pic.twitter.com/X8W3Qn8R9R

— Lori J. Pierce, MD, FASTRO, FASCO (@ASCOPres) June 1, 2020

We as advocates have a role to play to insure all patients receive appropriate and timely cancer care.

Dee
Every Day is a Blessing!