Two Months of Activities and Looking Ahead

Well, where did the last two months go?  I am not sure.  But when I looked at the calendar and it said, May 24th, I thought I really should post to my blog . It has been way too long. 

I was involved in many personal activities as a member of my homeowners association board. It is not an easy process to open a 55+ community pool in NJ in the time of Covid but we are working on it. I also spent lots of time and a few vet visits taking care of my dog. She had a growth removed but is recovering nicely.

 

And on a personal level, I had my second Covid vaccine. HURRAH! And I also I dealt with an ear infection. Yes, adults can still get ear infections.

On the advocacy front, I was so happy to take part in the 40th Anniversary of Cancer Hope Network. They provide one-on-one support for cancer patients and caregivers. I trained as a support volunteer with them in 2007. When I was first diagnosed I spoke to a volunteer. She gave me hope that I could make it to five years. Since then I have had over 50 matches with women who were diagnosed with ovarian cancers or others considering clinical trials.

I also took part in the COSMO (The Collaboration for Outcomes using Social Media in Oncology) Conference. I was part of the The  Patient Engagement in Social Media:When the Doctor is No Longer the Expert panel. It was wonderful speaking about the #gyncsm  cancer community along Tamika Felder, Patricia Anderson, John Novack and Janet Freeman-Daily leaders of other online patient communities and social media leaders. I enjoyed two days interacting with and hearing from cancer Social Media experts like Drs Dizon, Lewis, Durma, Drake, Miller , Painter and others.

You can follow COSMO on Twitter at @COSMONC or the hashtag #COSMOnc. 

On May 12th the #gyncsm community spoke about  Recurrence Secondary Cancer and other Diseases. Check out the highlights on our blog at http://gyncsm.blogspot.com/2021/05/may-12-2021-risk-of-recurrence-second.html.

I am looking forward to  #ASCO21 and hope to highlight the great gyn cancer and disparity research being done. Join me and follow the #gyncsm and #ASCO21 hashtags.

 

Dee

Every Day is a Blessing!

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.

Supporting Those Diagnosed with Cancer - Cancer Hope Network Chrysalis Gala

Last night at Cancer Hope Network's (CHN) Chrysalis Gala, I had the honor of telling my story as an ovarian cancer survivor and a CHN support volunteer . Cancer Hope Network provides one-on-one peer phone support for newly diagnosed or recurrent cancer patients and their caregivers. I have been a support volunteer for over seven years now. Last night at the Hanover Marriott many of CHN's supporters of the past 30+ years were present to celebrate the support provided and to raise funds to continue the support they provide to cancer patients.

Below are the main points I shared with the audience.

2005 started out as a pretty good year. I was looking forward to  celebrating my 50^th birthday at DisneyWorld with family and friends -12 in all. In late May during my annual visit with my gynecologist I mentioned a pain I had on the left side of my abdomen. In early June after a transvaginal ultrasound the pain got worse and I ended up in the ER. After an  MRI  I learned my ovaries were enlarged. I was quickly referred to the gynecologic oncologists at the Rutgers Cancer Institute of NJ. 

On July 29th one month after my birthday my world changed. I woke up from surgery and to learn I had stage 3B ovarian cancer. I went into that surgery knowing there was a chance it could ovarian cancer but up to that point I had been more fearful of being diagnosed with breast cancer. My sister passed away from breast cancer at the age of 47.

2 weeks after that major debulking surgery. I started chemotherapy. I chose to be part of a clinical trial. The trial added selenium to the standard of care - carboplatin and taxol. It was tough loosing my hair and developing neuropathy but what I was most upset about was the fact that I had not met one other woman with ovarian cancer. What made it worse - any time I mentioned ovarian cancer the response was – Oh Gilda Radner  who played Roseanne Roseannadanna on Sat Night live have ovarian cancer. Yes– she had that disease. But she didn’t live. 
  
I also knew the statistics about women diagnosed with late stage ovarian cancer. Only 30% lived 5 years. I wanted to be in that 30% and I needed to talk to someone who had the disease and lived.

When I saw a brochure for Cancer Hope Network in the waiting room of my gynecologic oncologist’s I picked it up and brought it home. I hesitated at first to call. At the time I wasn’t too keen on calling anyone and talking about ovarian cancer. But one afternoon as I laid in bed too tired to get up I went ahead and called. 

I told the person who answered the phone that I just needed to talk to someone who had ovarian cancer and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer named Judy. I spent the next half hour talking to a women diagnosed with stage 3b OC, she lived in NJ, she had the same surgery and chemotherapy ,her son worked at the college my son was attending, and even better Judy was a 5 year survivor. It was wonderful. I was not alone. This meant I could survive too!
 
When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did the training and within a week or two I was talking to other women with ovarian cancer. I did that until I recurred on my liver and spleen in 2008 and had to have surgery and more chemotherapy I had to take a break. But once treatment was done I was back on the phone able to offer a perspective of being a survivor of recurrent ovarian cancer. I have been volunteering ever since.
 
I have spoken to women from NY, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to small community cancer centers or their local oncologists. I have talked to women who are a short ride from their doctor’s offices and infusion centers.  And also women who drove eight hours or took a plane and stayed overnight at  hotels when they had treatment. They did all this to get their life saving treatments.

There were women who went to in person support groups and others that took part in online groups. But each and every one of them wanted to talk one –on –one with another survivor who understood. At some point in most of the conversations I have had after I have say  "I felt that way too" the reply has always been the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network for allowing me to provide hope and to give back to other women the hope and support you gave to me.   

I look forward to continuing to volunteer with CHN and to support women diagnosed with ovarian cancer for many years to come.

Dee
Every Day is a Blessing! Blessed to have found CHN when I was initially diagnosed.

Paying it Forward- 7 years

This arrived in the mail from Cancer Hope Network .

I love the sentiment on the front. Then I opened it and saw that it was a thank-you for the seven years I have been a support volunteer. Wow! I remarked to my husband that it sure hasn't seemed like seven years.

Back in 2005 I was upset. I knew the statistics about women diagnosed with late stage ovarian cancer. Jeez I knew that Gilda Radner died from that disease. I just wanted to talk to someone who had the disease and lived. Heck I didn't even meet any women in my cancer center with the disease. So when I saw a brochure for Cancer Hope Network in the waiting room I picked it up and brought it home. I hesitated at first to call. I'm not too keen on cold calling someone. But one afternoon as I sat in bed I went ahead and called. I told the person who answered that I just needed to talk to someone who had been in my situation and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer. I spent the next half hour talking to a women diagnosed with 3b, lived in my state,  had the same chemotherapy and surgery and was a 5 year survivor. It was wonderful. I was not alone. I could survive too!

When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did training and within a week or two I was talking to other women with ovarian cancer. I have been volunteering ever since. Although I did take a break when I recurred and was back in treatment but once treatment was done I was back on the phone.

I have spoken to women from NYC, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to community cancer centers and oncologists. I have talked to women who are a short ride from their doctor and center and those that drive eight hours or take a plane and stay at hotels when then go for treatment.But each and every time I remark "I felt that way too" the reply is the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network and all their volunteers for supporting those diagnosed with cancer. If you are newly diagnosed with any cancer or a caregiver for someone diagnosed with cancer you may call( 1-800-552-4366 )  or visit the Cancer Hope Network website online  to be matched with a survivor.

Dee
 Every Day is a Blessing !

Four Years as a CHN Volunteer

I've been away the past few days moving my son and his dog into his new apartment . He began graduate school for a PhD in History yesterday. I am so proud of him yet sad he is 900 miles from home. So I was a bit sad this morning missing him as I tidied up his room and bathroom until a card came in the mail.

Those who bring sunshine to the lives of others cannot keep it from themselves. 

                                -Sir James M Barrie

That was the saying on the front of a card I received from the Cancer Hope Network. Inside the card were these anniversary wishes.

You do indeed bring sunshine into our lives and those with whom you speak.

You are truly inspirational !

Reading that made me smile. It turns out I have been a volunteer talking to women throughout the country for four years now. It hasn't seemed that long. I have enjoyed talking to others diagnosed with ovarian cancer or about participating in a clinical trial. I hope these survivors learn about the disease and feel hopefully after speaking to me.

If you are newly diagnosed with any cancer or a caregiver for someone diagnosed with cancer you may call( 1-800-552-4366 )  or visit the Cancer Hope Network website online  to be matched with a survivor. I'm glad that 7 years ago I reached out to this wonderful organization.

Dee
Every Day is a Blessing!

HopeNet Social Network to be Discontinued- 1/1/12

As many of you know I volunteer with the Cancer Hope Network and speak to other ovarian cancer survivors throughout the country. For the past year I have also been the moderator of the trial online service of Cancer Hope Network known as HopeNet Social Network's Gynecologic Cancer Survivors and Supporters group. I recently e-mailed this message to members of the group.

Hello Gynecologic Cancer Survivors and Supporters Group,

Thank you so much for being part of this group. As you may have heard Cancer Hope Network’s social network, HopeNet, will be shutting down Feb 1^st 2012.

This service was begun as a trial to increase awareness and knowledge of Cancer Hope Network's core service: one-on-one matching with another cancer survivor. Analysis of the site’s usage and quantity of membership indicate it is not achieving results consistent with what we hope to achieve in our mission and vision. Therefore, the decision has been made to discontinue this aspect of Cancer Hope Network's web services. Please note, the web site is still completely active – only the HopeNet tab will be deactivated.

If you would like to stay in touch with Cancer Hope Network, please join them on Facebook or follow themon Twitter. Also, if at any point you would like to be able to speak one-on-one with a fellow cancer survivor, please contact Cancer Hope Network by email atinfo@cancerhopenetwork.org or phone at 877-HOPNET (877-467-3638) and they can try to match you with one of their support volunteers.

It has been a pleasure getting to know so many of you. You may contact me through my Blog, Women of Teal( womenofteal.blogspot.com).If you are interested in online groups you may want to join Inspire (www.inspire.com) or the ovarian cancer mailing list at ACOR (http://www.acor.org/) . I have been a member of both these groups for five years now and found them very helpful.

May the New Year bring you good health and happiness.

Wishing you all the best,

Dee

Dee

Every Day is a blessing!

Helping Others on the Journey- Cancer Hope Network

When I first learned I had ovarian cancer I did not know another woman with the disease. At my cancer center, I picked up a brochure for the Cancer Hope Network. I gave them a call and they matched me with a woman from NJ who was a survivor for over 5 years. I was thrilled to talk to her and saw her journey as one I could be on too.

In 2008, I decided that I wanted to be the person on the other end of the phone line giving another woman hope. So I took the training and became a patient support volunteer. I have spoken to women throughout the US . I've even made a call at 9pm to be able to chat with a survivor in California when they got home from work. I took a short leave of absence from my calls when I recurred but then started back up again when I finished treatment.

On Saturday, I was pleasantly surprised to receive a card in the mail from Cancer Hope Network. It said

Cancer Hope Network's

Garden of Hope Award

---------

In recognition and with deep gratitude

for three years of helping people

diagnosed with cancer .

Had it really been that long? It seemed like just yesterday when I started making those calls.

Along with the card were packets of flower seeds with the words "Volunteers plant the seeds of kindness". I can't wait to plant those seeds in my garden next year and watch the daisy's grow.

Dee

Every Day is a Blessing! I am blessed to be a Cancer Hope Network Support Volunteer.

Share Your Survivor Story

I just realized that I haven't posted in a while. It has been a busy past few days.

I have developed so many wonderful friendships during this cancer journey. Some of these new friends are survivors, some are nurses and some are even researchers. I've interacted with women from all walks of life and from all over the world. I feel strongly that people diagnosed with cancer who have found support from another survivor should return that act of kindness. I have done that for the past few years in a number of ways but mostly through my work as a volunteer for Cancer Hope Network.

On Friday morning I received a phone call from Trish at Cancer Hope Network. She told me she had a match and there was a woman whose ovarian cancer (OC) had recurred. She really wanted to talk to someone who had a remission after a recurrence. I said sure. I had some time that morning to chat with her. She gave me the woman's information.

I waited about 10 minutes and I called the OC survivor. We talked for about 30 minutes. She told me what treatment she had taken and what her CA-125 and scans showed now. I was able to share my story. How I recurred and went into complete remission ( for over 2 years now). She was so happy to hear my story . Then she told me what her proposed course of treatment was going to be. I recalled a study I learned of when I attended the ASCO meeting that used the same drugs. ( Thank you to the Research Advocacy Network for allowing my attendance at the meeting.) Again she was so appreciative of the information I provided. I'll be checking back with her in a few days.

So if you are a survivor or a caregiver who would like to share your story to provide hope to newly diagnosed or recurrent cancer patients please think about volunteering with the Cancer Hope Network. They are located right here in NJ but serve cancer patients throughout the country.

If you are a cancer patient check out their social network. You might just hear from me if you join the Gynecologic Sisters and Supporters Group.

Dee

Every Day is a Blessing! My life is blessed by these women of teal.

A Friend's Hobby and Mine

My friend S has been sewing quilts for years. This past winter S was telling me about working on a quilt for her grandchild. She showed me some of the pieces she was creating. They were beautiful, a marvelous combination of colors and patterns.

When I was at the local library a book of quilt patterns was for sale.I decided to buy it for S. At home I skimmed though the book and found a pattern called the Martha Washington Star Block. Now I admit I am not a great sewer but I since my diagnosis I love to paint. So I thought how about painting a Life Quilt piece. So I started sketching different ideas in the pattern of the star. I tried showing places I lived, places I visited, my RU Scarlet knight connection, my interests and then sketched one related to my cancer diagnosis. It took me a few months but I finally finished my Life Quilt piece which I call "Hope" in teal of course!

Dee

Every Day is a Blessing!

Cancer Hope Networks New Social Networking Site - HopeNet

The Cancer Hope Network (CHN) has a new website and a new social networking site called HopeNet. "Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and/or their family members."

HopeNet is a social network specifically for cancer patients. Anyone can join the network. YOu don't have to be from NJ. You don't have to be someone who has been involved with Cancer Hope Network in the past. As of today there are groups for lymphoma , prostate , esophageal , and head and neck cancer survivors as well as a group for young adult survivors and a caregivers group.

One of the first groups I called when I learned I has ovarian cancer in 2005 was Cancer Hope Network. I was matched with a wonderful lady - a stage III survivor of 10 years. She certainly gave me hope. So once I was able to, I applied to be a CHN Support volunteer. I spoke to women newly diagnosed with ovarian cancer from all over the country. I did that until I recurred in 2008.

So when I was asked to moderate a group for ovarian cancer survivors and their caregivers and I was happy to accept. I named the group Teal Sisters and Supporters.

It is open to ovarian cancer survivors of any stage and their caregivers, families and friends.

To join the group you will need to register to enter the site - don't worry it is very easy. Then you can click on Groups and join. Feel free to share information about your diagnosis , treatment and how you are feeling. And of course feel free to ask questions. Our discussions will be guided by our members.

I hope you can join us!

Dee

Every Day is a Blessing! Today I am blessed by the wonderful volunteers at CHN.

Cancer Hope Network Training

When I was first diagnosed with Ovarian cancer in 2005 ,I did not know any other ovarian cancer survivors. In September of that year, I called the number (1-877-hopenet) for Cancer Hope Network - which offers one-on-one support for cancer patients and their families. Interestingly, this organization is located in NJ my home state. They matched me with a woman in North Jersey who was a stage III Ovarian Cancer survivor of more than 7 years. It is hard to describe the relief I felt being able to talk to someone who knew exactly how I felt. She was also diagnosed at 50 and had similar chemotherapy treatments. I got off the phone thinking - if she can do this so can I.

Well, today I took a step to pay back that hope filled phone call by being trained as a Cancer Hope Network support volunteer. The day long training included learning how volunteers are matched with patients / caregivers, reviewing of the Cancer Hope Network policies and ethics and the actual procedures. We even had a chance to practice our skills with the CHN staff playing the parts of fictitious patients.

If you are one year or more post treatment you can be a volunteer. Questions? Call and speak to their friendly Patient Service Coordinators ( 877-467-3638)

LivingStrong

Dee