September came to an end at here we are at almost the midpoint of October. I had been thinking about this post for quite a long time now but was unsure of how to even begin.
In a book I was reading by Elizabeth Berg one of the characters stated she had a multitude of feelings and I thought to myself that is just what I need to call my post about September.
September brings a multitude of feelings to me. I love the Fall so the crisp cooler air is wonderful. The September of 2005 I was just getting my head around being diagnosed with stage 3b ovarian cancer. I was in 2nd / 3rd cycle of chemotherapy and I remember the windows being open and hearing kids outside playing while I rested.
September also brings out the teal ribbons and walks and other events to
raise awareness of ovarian cancer. I have seen an increase in the
number of buildings that turn teal so many times during September and that makes me happy.
At one event I to took part in I told a story about how the support group at my cancer center started and I felt proud to be a part of exactly the type of support other women diagnosed with ovarian cancer need. I was so happy to talk about my gyn oncs who spearheaded my advocacy work by pointing me toward the LiveSTRONG organization. But during the talk I also mentioned my sister who died from breast cancer in 1995. Right as I said those words I knew I was tearing up. I had to stop take a big deep breath and continue. Yes, all these years later I still miss picking up the phone and talking to her.
At the final KOH walk, while walking along the Jersey shore boardwalk I was overwhelmed by the fact that here it was 2019 and I was alive. I had beat the odds and in the 35% of women diagnosed with late stage ovarian cancer who lived 5 years. And I felt grateful for my family and friends and especially my "teal sisters" who walk this cancer journey with me. They understand how years later I can still be anxious and even scared when I need bloodwork or have a doctor visit. Sure I deal with neuropathy , digestive issues and chemo brain but gosh darn it I am still here!
I was glad going into the last event a fundraiser to support research in Ovarian Cancer at my cancer center. This one was run by my friends at Graceful Hope Foundation. Seeing the support and old friends was wonderful. But there is always that time during the dinner when we have to remember those women who died due to ovarian cancer . And they mentioned Dawn. And it hit me again I shook my head up and down and teared up as I thought we lost yet another wonderful mother , sister and friend . It is sad to think back to all the women brought together by this disease who were my friends - Gail, Lois, Patty, Sharon, Pam, Rita Kay, Carole, Janice, Corinne, Linda Ellen, Jayne and many more.
Even after so many years I experience a multitude of feelings in September.
Dee
Every Day is a Blessing!
Tuesday, October 15, 2019
Tuesday, October 1, 2019
ASCO Advocacy Summit
I am a patient advocate member of ASCO and last week I joined oncologists and members of ASCO in Washington, DC as part of the ASCO Advocacy Summit. We had training sessions on Wednesday and on Thursday we visited our Senators and members of the House of Representatives.
I was paired with Dr Charles Miller from Hawaii so we visited the offices of both NJ and Hawaii legislators.
The bills we asked our legislators to support:
HR 913 Clinical Treatment Act - We stressed the importance of participation by Medicaid patients in clinical trials and the stumbling blocks to participation they currently experience. Meidcaid insures one-fifth of the US population. Yet only 12 states currently allow Medicaid coverage of clinical trial routine care. In those states that cover clinical trials there has been a minimal effect on overall care costs. We asked that patients on Medicaid receive coverage for routine care when enrolled in a clinical trial.
HR 3107 Improving Senior Timely Access to Care Act - Seniors on Medicare Advantage plans are experiencing delays in medically necessary testing and treatment due to slow prior authorization policies. Denials are sent without explanations of the determination. We asked that a uniform e- authorization be created for Seniors on these plans and that an explanation of denial be provided so that timely access to care can take place.
HR 2279 / S 2546 Safe Step Act - Step therapy protocols requires patients to try and fail medications suggested by the payer before the medication prescribed by the doctor can be used Allowing this process in cancer care would delay access to the best treatment for cancer patients and also increase side effects and reduce quality of life. I was happy to learn that Rep Bonnie Watson Coleman (NJ) has already co-sponsored the House Bill.
While I did not speak to Senators Booker, Menendez or Congresswoman Watson Coleman in person their aides were very interested in hearing how these bills would effect the people in New Jersey.
You may not be able to travel to DC to speak to your legislators but if any of these bills are important to you it is easy to reach out to your Senators or Congressmen via e-mail or phone and ask them to support the bills that are important to you.
Thank you ASCO for allowing me to be the voice of cancer patients in NJ.
Dee
Every Day is a Blessing!
 |
| ASCO On the Hill. |
I was paired with Dr Charles Miller from Hawaii so we visited the offices of both NJ and Hawaii legislators.
 |
| Visiting with Congressman Case (Hawaii) |
HR 913 Clinical Treatment Act - We stressed the importance of participation by Medicaid patients in clinical trials and the stumbling blocks to participation they currently experience. Meidcaid insures one-fifth of the US population. Yet only 12 states currently allow Medicaid coverage of clinical trial routine care. In those states that cover clinical trials there has been a minimal effect on overall care costs. We asked that patients on Medicaid receive coverage for routine care when enrolled in a clinical trial.
HR 3107 Improving Senior Timely Access to Care Act - Seniors on Medicare Advantage plans are experiencing delays in medically necessary testing and treatment due to slow prior authorization policies. Denials are sent without explanations of the determination. We asked that a uniform e- authorization be created for Seniors on these plans and that an explanation of denial be provided so that timely access to care can take place.
HR 2279 / S 2546 Safe Step Act - Step therapy protocols requires patients to try and fail medications suggested by the payer before the medication prescribed by the doctor can be used Allowing this process in cancer care would delay access to the best treatment for cancer patients and also increase side effects and reduce quality of life. I was happy to learn that Rep Bonnie Watson Coleman (NJ) has already co-sponsored the House Bill.
While I did not speak to Senators Booker, Menendez or Congresswoman Watson Coleman in person their aides were very interested in hearing how these bills would effect the people in New Jersey.
You may not be able to travel to DC to speak to your legislators but if any of these bills are important to you it is easy to reach out to your Senators or Congressmen via e-mail or phone and ask them to support the bills that are important to you.
Thank you ASCO for allowing me to be the voice of cancer patients in NJ.
Dee
Every Day is a Blessing!
Tuesday, September 17, 2019
You Need to Know That...
An estimated 22,530 women will be diagnosed in the U. S. in 2019
An estimated 13,980 women will die from the disease in 2019.
There is no screening test for ovarian cancer.
There are symptoms:
Bloating,
Feeling Full quickly,
Frequent Urination,
Abdominal/ Pelvic Pain,
Fatigue
The risks to develop ovarian cancer are :
Middle age or older ( half of the women diagnosed are over 63 yrs.)
BRCA mutation or Lynch Syndrome
Eastern European or Ashkenazi Jewish
Have endometriosis
Never gave birth
Sources: CDC, American Cancer Society , OCRA
I hope you will consider sharing this information and donating to support ovarian cancer research. Thanks!
Dee
Every day is a Blessing!
Wednesday, August 28, 2019
What Will You Do During Ovarian Cancer Awareness Month?
September is right around the corner.
Did you know that September is Gyn Cancer Awareness Month in the US? Gynecologic cancers include Ovarian Cervical, Vaginal, Vulvar, Endometrial/Uterine, Primary Peritoneal and Fallopian Tube cancers.
During September things can get really busy as the number of awareness events increases exponentially.
On Wednesday, September 11th the #gyncsm community, which I co-founded with Christina Lizaso, will celebrate the community's 6th Anniversary. Our topic will be The Breast and Ovarian Cancer Connection. Join us and a representative from the National Society of Genetic Counselors at 9pm Eastern Time.
This year there are a number of awareness and fundraising events in NJ that you can participate in.
I already mentioned the Rutgers Cancer Institute of New Jersey Patient Education event on September 12thin the previous blog post. Check it out here.
There is an Education event sponsored by Summit Medical Group on September 7, 2019. For more info and to register call 908-277-8889 or sign up online at: summitmedicalgroup.com/events
As for walks I will be doing the Kaleidoscope of Hope Ovarian Cancer Foundations walk in Bradley Beach on September 28, 2019. They also hold a walk in Morristown ( Sept. 15) and Lyndhurst (Sept. 22) . Check their website ( https://kohnj.org/funded-research/) for research they have supported.
If you would like to donate to the walk please visit https://www.classy.org/fundraiser/2226659
The NJ Chapter of NOCC is joining the Downtown West Orange Alliance for the Mayor's 5 K and Walk. You can find more information at http://ovarian.org/component/events/event/955
The Teal Tea is holding Falling For Teal Fashion Show on Sept 22nd. You may find more info at https://www.tealtea.org/event-falling-for-teal-fashion-show .
Graceful Hope will be holding their 6th Annual benefit dinner to benefit Rutgers Cancer Institute of NJ in Elizabeth on September 28th. See their Facebook page for more information. https://www.facebook.com/GRACEfulHope/
For my Central and South Jersey Friends , the Sandy Rollman Foundation is holding a number of events in September including an Ovarian Cancer Awareness night at the Phillies (9/12) , a General Hospital Philly events (9/14) and OvaryAct Gala (9/20). Please check their website for more information ( https://sandyovarian.org/ ).
Of course you can help raise awareness by hanging teal ribbons. See the Turn the Towns Teal website for how you can help ( https://www.turnthetownsteal.org/ ).
If you are holding an event in NJ to raise awareness or funds for research . Please let me know and I will update this post.
Dee
Every Day is a Blessing!
Did you know that September is Gyn Cancer Awareness Month in the US? Gynecologic cancers include Ovarian Cervical, Vaginal, Vulvar, Endometrial/Uterine, Primary Peritoneal and Fallopian Tube cancers.
During September things can get really busy as the number of awareness events increases exponentially.
On Wednesday, September 11th the #gyncsm community, which I co-founded with Christina Lizaso, will celebrate the community's 6th Anniversary. Our topic will be The Breast and Ovarian Cancer Connection. Join us and a representative from the National Society of Genetic Counselors at 9pm Eastern Time.
This year there are a number of awareness and fundraising events in NJ that you can participate in.
I already mentioned the Rutgers Cancer Institute of New Jersey Patient Education event on September 12thin the previous blog post. Check it out here.
There is an Education event sponsored by Summit Medical Group on September 7, 2019. For more info and to register call 908-277-8889 or sign up online at: summitmedicalgroup.com/events
As for walks I will be doing the Kaleidoscope of Hope Ovarian Cancer Foundations walk in Bradley Beach on September 28, 2019. They also hold a walk in Morristown ( Sept. 15) and Lyndhurst (Sept. 22) . Check their website ( https://kohnj.org/funded-research/) for research they have supported.
If you would like to donate to the walk please visit https://www.classy.org/fundraiser/2226659
The NJ Chapter of NOCC is joining the Downtown West Orange Alliance for the Mayor's 5 K and Walk. You can find more information at http://ovarian.org/component/events/event/955
The Teal Tea is holding Falling For Teal Fashion Show on Sept 22nd. You may find more info at https://www.tealtea.org/event-falling-for-teal-fashion-show .
Graceful Hope will be holding their 6th Annual benefit dinner to benefit Rutgers Cancer Institute of NJ in Elizabeth on September 28th. See their Facebook page for more information. https://www.facebook.com/GRACEfulHope/
For my Central and South Jersey Friends , the Sandy Rollman Foundation is holding a number of events in September including an Ovarian Cancer Awareness night at the Phillies (9/12) , a General Hospital Philly events (9/14) and OvaryAct Gala (9/20). Please check their website for more information ( https://sandyovarian.org/ ).
Of course you can help raise awareness by hanging teal ribbons. See the Turn the Towns Teal website for how you can help ( https://www.turnthetownsteal.org/ ).
If you are holding an event in NJ to raise awareness or funds for research . Please let me know and I will update this post.
Dee
Every Day is a Blessing!
Monday, August 12, 2019
Gyn Cancer Education Session - Sept 12, 2019 , NJ
I hope to see some familiar faces in the crowd.
Dee
Every Day is a Blessing!
Sunday, August 11, 2019
Blog Hop Challenge
A cancer advocate I admire, Nancy Stordahl, writes the blog Nancy's Point about breast cancer and loss. Every summer she holds a blog challenge. This year it is a blog hop challenge.
From Linky Tools : "What is a blog hop?
A blog hop is a linky list that is SHARED ON MULTIPLE BLOGS. When several blogs put the same linky list code on their blog, the exact same list appears on each blog. Blog readers see the same list on each blog, and can "HOP" from blog to blog seeing the same list of links to follow: BLOG HOP!"
I am up for the challenge so here goes:
I am an ovarian cancer survivor and research advocate. I have been writing this blog since 2007 not as frequently as I did in the beginning but I try my best to stay on top of new research developments and share them and other news with my followers. I love dogs and painting.
2. Have you ever participated in a blog hop before?
Nope, first timer.
3. What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I like to read personal stories and informational blogs especially about new research like CAR-T and new screening tests.
4. Describe yourself in three words. Yes, just three!
organized, kind, resilient
5. Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.
Cheaper by the Dozen, Call of the Wild, Island of the Blue Dolphins
6. What are you reading right now, or what’s on your to-read list for when you have time?
Memory Man Baldacci, I have about 20 books on my to read list on Goodreads.
7. What’s your favorite dessert of all time?
Cannoli
8. Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
Amber, an awesome All-American dog . She loves to jump and do agility.
9. What’s something people don’t know about you and might be surprised to learn?
I wanted to be an astronaut when I was in high school.
10. Do you believe healthcare is a privilege or a right?
Most certainly it is a Right.
11. What’s your favorite thing about blogging and/or reading blogs?
Being able to share information about cancer and the emotions I have experienced as an ovarian cancer survivor.
12. What’s something you really suck at?
card games
13. What’s something you’re pretty good at?
baking
14. How do you escape from cancer (or life in general) worries?
From Linky Tools : "What is a blog hop?
A blog hop is a linky list that is SHARED ON MULTIPLE BLOGS. When several blogs put the same linky list code on their blog, the exact same list appears on each blog. Blog readers see the same list on each blog, and can "HOP" from blog to blog seeing the same list of links to follow: BLOG HOP!"
I am up for the challenge so here goes:
2019 Blog Hop Challenge Questions
1. Who are you? If applicable, share anything you want about
your cancer (type, stage, when diagnosed, whatever.) Share something
about yourself such as where you live, the name of your blog and it’s
“mission” (no links here, though, or you might end up in spam), a
challenge you have faced or are facing now, or whatever you want.I am an ovarian cancer survivor and research advocate. I have been writing this blog since 2007 not as frequently as I did in the beginning but I try my best to stay on top of new research developments and share them and other news with my followers. I love dogs and painting.
2. Have you ever participated in a blog hop before?
Nope, first timer.
3. What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I like to read personal stories and informational blogs especially about new research like CAR-T and new screening tests.
4. Describe yourself in three words. Yes, just three!
organized, kind, resilient
5. Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.
Cheaper by the Dozen, Call of the Wild, Island of the Blue Dolphins
6. What are you reading right now, or what’s on your to-read list for when you have time?
Memory Man Baldacci, I have about 20 books on my to read list on Goodreads.
7. What’s your favorite dessert of all time?
Cannoli
8. Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
Amber, an awesome All-American dog . She loves to jump and do agility.
9. What’s something people don’t know about you and might be surprised to learn?
I wanted to be an astronaut when I was in high school.
10. Do you believe healthcare is a privilege or a right?
Most certainly it is a Right.
11. What’s your favorite thing about blogging and/or reading blogs?
Being able to share information about cancer and the emotions I have experienced as an ovarian cancer survivor.
12. What’s something you really suck at?
card games
13. What’s something you’re pretty good at?
baking
14. How do you escape from cancer (or life in general) worries?
Reading, painting landscapes and animals, spending time with my family and dog.
Thanks for reading!
Dee
Every Day is a Blessing
Thanks for reading!
Dee
Every Day is a Blessing
Thursday, August 8, 2019
A Long life and What I Forgot
On July 26, my husband and I drove up to Westchester County to see my dear mother-in-law. She has been in a nursing home a number of years dealing with Alzheimers. She was a few months shy of her 100th birthday and her health was declining. I used that visit to show her photos of her great-grand sons, to tell her how important she was in my life and how awesome a mom, grandmother and great-grandmother she was. I am so glad I had that opportunity.
The next day in the afternoon we received the call that she had passed away. The next few days were spent getting things in order for her services and funeral. My son and daughter decided to fly in so we made a trip to the Philly airport to pick them up - they arrived within 5 minutes of each other in the wee hours of the morning last Wednesday. The next two days were spent in Brooklyn for the services. Spending time with my husband's family (many who flew in from out of state) and old friends was special. I value the years I have been a part of this wonderful family and I was happy to have so many memories when we celebrated her life. While we were busy celebrating her long life many of our friends and family helped to made our life easier. They sent mass card, condolences and food. Others helped take in the mail, put out the garbage and walk the dogs.
Our children flew back to their spouses and kids on August 6th and for the past few days my husband and I have been catching up on sleep and getting back to the things we had put to the side for the past ten days.
When I got back to my advocacy on Twitter, I saw Christina's post that #gyncsm is almost 6 years old. It was then that I realized that I had totally forgot my cancerversary.
On July 29th I celebrated 14 years as an ovarian cancer survivor. I so appreciate my doctors at Rutgers Cancer Institute of New Jersey for making these years possible and I can't thank my family and friends enough for being by my side during treatments and for so many years after.
Deeply grateful,
Dee
Every Day is a Blessing
The next day in the afternoon we received the call that she had passed away. The next few days were spent getting things in order for her services and funeral. My son and daughter decided to fly in so we made a trip to the Philly airport to pick them up - they arrived within 5 minutes of each other in the wee hours of the morning last Wednesday. The next two days were spent in Brooklyn for the services. Spending time with my husband's family (many who flew in from out of state) and old friends was special. I value the years I have been a part of this wonderful family and I was happy to have so many memories when we celebrated her life. While we were busy celebrating her long life many of our friends and family helped to made our life easier. They sent mass card, condolences and food. Others helped take in the mail, put out the garbage and walk the dogs.
Our children flew back to their spouses and kids on August 6th and for the past few days my husband and I have been catching up on sleep and getting back to the things we had put to the side for the past ten days.
When I got back to my advocacy on Twitter, I saw Christina's post that #gyncsm is almost 6 years old. It was then that I realized that I had totally forgot my cancerversary.
On July 29th I celebrated 14 years as an ovarian cancer survivor. I so appreciate my doctors at Rutgers Cancer Institute of New Jersey for making these years possible and I can't thank my family and friends enough for being by my side during treatments and for so many years after.
Deeply grateful,
Dee
Every Day is a Blessing
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