Memories and Change

One thing I can say on this journey with cancer is that Change is Inevitable. 

In 2006,  after I finished treatment for ovarian cancer,  I started attending a gyn cancer support group at  The Wellness Community of Central New Jersey which later became the Cancer Support Community of Central NJ  and is now Crossroads 4 Hope. I was so happy to be with other women who had been diagnosed with a gynecologic cancer. They "got it". I would drive from Edison to Bedminster to touch base with some amazing and inspiring women.  I attended art classes that were offered, educational sessions and my favorite presentation "Bogeyman in the Closet "dealing with the worries of recurrence.

I stopped attending the group during my recurrence and started up again when I finished treatment.

As my advocacy work grew, I not only attended the support group but also made presentations to other cancer survivors too. In 2008, after attending two LiveSTRONG Survivor Summits, I presented Advocacy 101. In 2011, I spoke on Reading Between The Lines in which I offered advice on how to critically read cancer research news.  In March 2012, I presented Survivor to Survivor: Understanding Cancer Research, on understanding how researchers report trial results in journal articles. 

After moving further from Bedminster,  I missed a number of in-person meetings but managed to attend a few every year. I loved this group. There were a few women who had been going for a number of years like me and a new group but it didn't really matter because there was always an atmosphere of strong support and understanding. 

When the Covid Pandemic started all the groups were switched to online Zoom meeting. I once again joined in.  The women in this group were newly diagnosed ovarian cancer and endometrial cancer survivors. I was the "old timer". We spent time talking about treatments, and genetic testing along with Covid testing, masking, vaccinations and our higher risk of contracting Covid. We lost two women during Covid. Although I never met them in person, I still felt their loss. 

In December,  the last meeting of the gyn cancer support group was held. There were 3 women in person and two of us online. The five of us were the core group on Zoom during Covid. There is hope to have some special programs for gyn cancer survivors in the future. In the meantime we can stay in touch through email. I am sad but understand the reasons for stopping and I appreciate the opportunity to have met so many amazing women and their families too, through this support  group.

Today as I was checking my contact list on my cell phone for a friend's number,  I ran across Lois's number, then Dawn's , then Carol's , then Rosemary's, then Diane's.  All these women were friends and their lives were cut short due to ovarian cancer. Some of them almost 10 years ago some two years ago.   I hesitated for a little bit as I came across each name. I thought of the impact they made in my life as survivors, advocates and friends. Wonderful memories of fundraising events sharing delicious food, meetings in the diner, support group meetings and KOH walks. We were all very different and I am not so sure our paths would have crossed if we had not all had a cancer diagnosis but I am so glad they did. 

Then I hit delete. I don't need their numbers, I just need the memories of having them in my life. 

Dee

Every Day is a blessing.

 

Advocacy - the Good and the Loss

Since my last post, my advocacy work has been time consuming but worth it since I felt good about the "work" I was doing. There were two Scientific Review Board meetings, two ASCO Evidence Based Medicine Committee meetings, two #gyncsm chats ( Genetic Testing and Gyn Cancers , Talking to Family and Friends about Cancer and Cancer Risk), two Citizen Scientist Workgroup meetings, a Community Cancer Action Board meeting and support calls for Cancer Hope Network. I also was involved in submitting two journal articles.  I can't wait to share them early next year. 

Those were the good things. But with those comes the sad parts. During a support group meeting in October the moderator asked me why I didn't write about those sad parts.At that time it was too difficult.

I met Nadia through Twitter. In December 2020, she reached out to me via direct message on Twitter.   She had been diagnosed with stage 3 high grade serious ovarian cancer.  Nadia Chaudhri was a neuroscientist in Canada. She taught, had a lab and mentored students. She was married with a young son. We didn't speak too much about treatments except for maintenance therapies. But we did talk about emotional issues. How to find a new way to live after ovarian cancer,  sharing the best times with our loved ones and talking to children about our cancer. In February, she told me the lesion was gone . We talked about savoring that good news. In DMs, we talked how I plot my CA-125's and how much to this day I still get anxious when I need to go for that blood test.

She shared on her public Twitter account about ovarian cancer, her treatments and hospitalizations, and her family. She gained thousands of followers.  In May, she learned her cancer had recurred. In a Tweet , she shared how she told her son she was dying of cancer.  GMA published her story Mom gets outpouring of love from Twitter after revealing she has to tell her son she is dying (https://www.goodmorningamerica.com/wellness/story/mom-outpouring-love-twitter-revealing-son-dying-77674650). In a DM, I shared that my mother passed away when I was young and how I thought that telling her son was a loving act.

In September , Ovarian Cancer Awareness month, she shared her story on the GMA website to raise awareness of symptoms in  Mom dying of ovarian cancer shares what she wants women to know about the deadly disease (https://www.goodmorningamerica.com/wellness/story/mom-dying-ovarian-cancer-shares-women-80167654) . She also raised funds to support underrepresented scholars in her research area.

On October 5th, at the age of 43 Dr Nadia Chaudhri died. 

I read a tweet saying she had passed and sat at my desk and cried. I never met Nadia in person yet her life affected me so, so strongly. I had a hard time explaining to my husband as he saw me crying how a women I only met because we had ovarian cancer could have such an strong affect on me. I still can't explain it except that Nadia was an extraordinary woman. 

Dee

Every Day is a Blessing!

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

Mixed Emotions

Sometimes I find myself so deep in my advocacy work and spending time with family ( my son and his wife visited for a few days)  that I don't have time to write blog posts. I apologize to my readers. 

This past weekend, I attended events for two ovarian cancer organizations. The Teal Tea Foundation (TT) held their 10th Anniversary Gala on Saturday.  And the Kaleidoscope of Hope (KOH) Foundation  held their Annual Awards Luncheon on Saturday. Both NJ based foundations raise funds for ovarian cancer research and awareness.

But in the post will not be writing about the wonderful work these foundations do each and every year.  Rather, I want to share how I felt as one of the survivors in the room.

When I arrive at each one, I am proud. Proud to be involved in organizations that are making a difference.  I am hopeful. Hopeful for the future as I listen to the researchers talk about their work.  Yet, I am sad. So sad that I at times I have to hold back tears. 

Why? You're healthy you say. You should feel good. Yes,  that is true but surviving without your friends by your side is difficult at times.

My friends, three in particular, whose lives were lost due to a gynecologic cancer, were missing from these events - Anne, Shari and Carole. But do you know who was there? Their husbands - Don, Dave and Bob.

I watched the faces of these supportive caregivers as their wives were honored and again as they watched survivors receive a special gift. I glance at my husband who had that look - knowing that he was thinking how it might have been him. 

Don't get me wrong it was wonderful to see Don, Dave and Bob. They knew me during those "no Hair Days". But I got well and their wives did not. So in a way the relationship changed.

It is hard to describe the nervousness and funny feeling I get in the pit of my stomach when I first see these men.  Sometimes I worry about what I will say. Do I remind them of a time filled with pain? I'm not sure what I am feeling - survivors guilt maybe?

I haven't seen Don since last year's TT event. We reminisced over the times he brought Anne to support group because she wasn't well enough to drive herself. He told me how he loved hearing all of us laugh at those meetings as he sat in a nearby lounge. That funny feeling started to go away.  Don smiled as I told him about the heron who regularly visits the pond behind my home. Anne loved herons and asked that we think of her when we see one. I think of her a lot. 

It took me until the last 15 minutes of the TT Gala to walk up to Dave. Shari passed away July, 2014. Like Don, the last time  I saw him was last year's TT event.  I walked up to him and said, " I was friends with... " he stopped me mid-sentence and said "Sure I know who you are. Dee, how are you doing?"  and I got big hug and the funny feeling went away. We talked about our families and he repeated more than once how strongly he feels that supporting research is the only way we can make a difference in the lives of women diagnosed with ovarian cancer. I totally agree. Together we are focused on finding a cure.

I've seen Bob a number of times since Carole passed away in February. We both now serve on the Board of KOH. One of the reasons I returned to the Board of KOH was because of Carole and her dream of finding a detection test and a cure. I am happy that I will be working with Bob because we are on the same page when it comes to the importance of research . Seeing him more frequently  keeps the funny tummy feeling from kicking into high gear. 


At events like these two I especially feel the loss of these women but I am glad that I have the chance to see their husbands and families, even if it means I feel such mixed emotions.

I know there are bereavement groups but does anyone know of a group / organization the reaches out to the countless partners, spouses and family members whose loved ones lives were taken by ovarian cancer?

Dee
Every Day is a Blessing! Blessed to know that Teal Tea and Kaleidoscope of Hope Foundations are focusing their efforts on research.

An Amazing Advocate and Friend

I hated opening my e-mail on Monday afternoon. It's title was simply, "Carole". I knew before I opened it what it would say. Carole had been in hospice the past few weeks. She passed away on Sunday, February 7th, her 60th birthday. She had thrived 9 years after her initial ovarian cancer diagnosis.

Carole was more than just another women with ovarian cancer, she was my friend. We first met at the gyn cancer networking group at the Cancer Support Community of Central NJ. We talked family, BRCA mutations, gynecologic oncologists, awareness and the latest research. We both served on the Board of the Kaleidoscope of Hope Foundation (KOH). Carole was serving in the role of President when she passed away.

Our paths intersected once more when she and I volunteered with the Cancer Hope Network. She loved sharing her story and supporting newly diagnosed women especially those with the BRCA mutations.

She was a wife, mother, teacher and had dedicated herself to raising awareness of ovarian cancer among women in NJ as well as raising funds for research. She loved to travel.  Carole had traveled the world -Europe, South America, Asia. Her home living room was decorated with beautiful Asian works of art.

She thrived as she lived with cancer and was an inspiration to so many. "She never let illness slow her down and ended her battle, as always, on her own terms. " You may read more about her here and on the KOH website here.

Those who advocated along side her will be honored to continue her work raising awareness and supporting research to find a cure. Carole made an impact on my life and I will miss her. Donations in her memory may be made to KOH on their website. 

Dee
Every Day is a Blessing! I was blessed to have Carole in my life. 

Hitting the DELETE button

I upgraded my phone the other day. In case the data transfer did not work correctly, I decided to go through my contacts and make sure I had all the important phone numbers.

Right up front under letter B was Jeanne Burton. We met each other at the Rutgers Cancer Institute of NJ support group . We talked a few times by phone but once she moved back to Maine it was mostly texts and e-mails.  She would text me updates- "Found a palliative care doctor", "really like my new oncologist" and " you should come visit" .  I wrote about her move to Maine  here. I regret never getting up to Maine before she passed on June 21, 2015. I wrote about the choices she made here.  I deleted her contact info.

Then under C was Courtney Clifford.  Courtney and I became friends in 2006 at the LiveSTRONG Survivors Summit. She experienced the same symptoms I did and was diagnosed a few months after I was.  The difference was she was 23 years old and I was 50. She was the youngest woman I had ever met who had ovarian cancer. We kept in touch through the years and saw each other at the 2008 LiveSTRONG Summit in Ohio her home state. I appreciated her long distance friendship. Sadly I had to write about her passing in 2012 (http://womenofteal.blogspot.com/2011/02/courtney-1982-2011.html) . I deleted her cell phone number.

I got to the letter F and there she was - Pam Favocci. I met Pam at the Rutgers Cancer Institute of NJ Support Group. Over the years we became close friends and together we took part in many awareness activities together. On December 14th she will be gone 3 years.  I honored her in A Friendship Ended Too Soon. I deleted her home number.

Then I got to J and there was Linda Juarez. A few years ago my gyn onc asked if I would talk to Linda. Out of that simple introduction a friendship grew. We both recurred in 2008 and that brought us even closer. We had late night phone calls about clinical trials and texts would arrive during her frequent hospital visits.  She passed in May this year and I  wrote about her here. I deleted her number.

I was a bit surprised when I got to T and I found Rita Kay Thomas' phone number. I forgot I had her phone number in my phone. When I was in college I first met Rita Kay - she was the Assistant Athletic Director. Who knew that our paths would cross 30+ years later. Ovarian Cancer took this amazing woman too soon in October 2012. I wrote about our friendship here. I deleted her number.

I thought about each of those women as I deleted their numbers.

I hated doing it because such a simple action triggered a deep sadness.


Dee
Every Day is a Blessing

Choices

You have a choice each and every day

I choose to feel blessed

I choose to feel grateful

I choose to be excited 

I choose to be thankful

I choose to be happy. 

          - Amber Housley

A friend and ovarian cancer survivor on Facebook posted a photo with these words on it today.

I instantly thought of the gynecologic cancer support group I went to this week. Most of the women are living with disease and two of us are NED(no evidence of disease). We talked about our treatments and side effects and then we started to talk about J. At our May meeting J told us she was stopping treatment and was moving to New England to be with her mom, family and friends.I wrote about it in this blog post. Not one of us told her that it was a bad decision . Not one of us told her to continue in treatment. Even though we all knew what would happen - eventually.

Eventually was June 21st. All of us thought she passed away too quick. We wanted more time with her - talking on the phone, texting, e-mailing or maybe even getting a chance to visit. We talked about the wonderful handbags she created. We were sad. But we were also grateful that she felt close enough to all of us to share her deepest fears and needs.  We were happy that we could tell her how much she meant to us. We were grateful that J had some time in a beautiful spot in New England.

Picture from J of the view from her home.

I am happy she let us be a part of her life. I will always admire her for making the choice she did.

Dee
Every Day is a Blessing! 

Two Different Goodbyes

The past week was not a good one for me. Sadly though, it was not an unusual one for me as I approach 10 years of survivorship. Something very similar happened in 2012.

At my support group meeting on Tuesday I said goodbye to J. She shared with the group that her cancer had spread and after years of being in various treatments and clinical trials she had decided to stop. She was moving home to be with her mom in another state and would be leaving in about two weeks. She invited us all to make a trip to visit her. My heart ached as I watched her share her feelings with us. She is brave and strong and scared. I held back tears. And I did a good job until she left the room. 

I came home and sent and e-mail to fellow group member and friend, Linda. I told her how much I missed her at the meeting and asked how her treatments were going.  She didn't e-mail back but I thought that she was back in the hospital for another treatment.

On Thursday J texted me. She had just gotten off the phone with Linda's husband. Linda had passed away on Tuesday.

OMG! I couldn't believe it. Not another woman I had grown to care about taken too soon. I put my cell phone down and yelled "I hate this". My husband came over and hugged me as I cried. Memories came flooding back.

Linda and I had talked countless hours on the phone. She would call or text and ask me about trials.  We discussed parp inhibitors, surgery options and social security disability. We talked about our supportive husbands and the impact of our disease on our families.  I loved hearing her talk about the tap dance lessons she took and the recitals she participated in.  Over the 7 years we knew each other we attended a number of ovarian cancer awareness events. I finally got to meet her husband in person at a Survivors Day event last year.

Linda's  last text to me was before our April support group meeting. She told me it was ok for me to tell the group members about the secondary cancer she had, that she had been in the hospital and had broken her wrist. She finished her text with "I like you and trust you." I wrote back " I like you too. Hugs ". I will miss those phone calls and texts.

And... I will continue to text and e-mail J as she moves home and shares special times with her family. And I am hoping to make that trip to see her.


Dee
Every Day is a Blessing! 

The Friends You Make

I am a member of a private group on Facebook. We from the US and the United Kingdom and are ovarian cancer survivors.

Kim lived close to me in Delaware. Over the past 3+ years we became friends. Kim was a special lady.  When another woman in the group, L,  had problems getting insurance in her state Kim wrote a letter to the governor on her behalf. She spearheaded an effort to help L's daughters when she passed. She was always ready to offer support in any way she could. She gave me her list of favorite Bible quotes. Those that gave her strength and hope. Over time I learned she loved wrestling. I watch it with my husband on Monday nights. I remember a series of posts back and forth on Facebook about the wrestler Fandango in the WWE. She made me laugh.

This morning on Facebook I read that Kim succumbed to the disease. Although we had never met in person I felt the same way I did when I learned friends from my support group had passed.  The disease caused our paths to cross online and we became friends. My one regret. That I never got a chance to give her a hug in person.

Rest in Peace my friend.


Dee
Every Day is a Blessing! I am blessed to have had Kim in my life.

Scars

Recently the #bcsm community discussed the invisible scars of breast cancer. It was an interesting and fast paced chat on Twitter. Later one survivor described her scars in a blog posted on Nancy’s Point  http://nancyspoint.com/breast-cancer-is-a-string-of-losses/ . I tweeted that gyn cancer survivors have invisible scars too and then decided to write about it here. 

Scars can be both visible and invisible. I have a number of visible scars. I have a scar on my neck from thyroid surgery in 1982. From my initial hysterectomy and debulking surgery in 2005, I have an eight inch vertical scar that begins at my belly button. From my liver resection and spleenectomy in 2008, I have two scars. One that travels 10 inches horizontally across my abdomen below my rib cage and another 4 inch vertical scar that meets up with the scar from my hysterectomy.The scars together have the shape of a capital letter T. 

These scars are starting to fade since my last surgery. But harder to fade are the scars that are invisible to others.These scars are very individual just as every woman diagnosed with ovarian cancer has a similar but different journey with the disease. Some of these scars can be physically painful while others can be emotionally painful. 

My first invisible scar is the neuropathy in my toes. Sometimes my toes are numb and sometimes my toes feel as if someone is sticking a knife into them. No one can tell when my toes are  bothering me but me, unless of course you have caught me taking off my shoe and rubbed my toes. 

I have trouble remembering the names of everyday things. Instead, I describe what it is I am talking about. I have written about this happening a few times in this blog. I read things and reread things and reread things again. I write entries for this blog and leave blank spaces because I can’t remember specific words. It takes me multiple tries to write what it is I want to say. ( Three days to draft, reread, rewrite this entry.) When I give talks I write the speech and then practice it over and over again. I am happy when my family can tell me the word I am missing and help me out.  But at times not remembering has brought me to tears.  I am sure that the invisible scar of chemobrain as survivors call it or cognitive impairtment as professionals call it  is due to the life-saving 16 chemotherapy treatments that have put me in remission. 

Instant menopause has brought it’s own set of invisible scars. Sure I was 50 and not having another child when my ovaries, uterus etc were removed but that doesn’t mean  the physical changes that have occurred due to the surgery are any less painful. Some women in their 20s and 30s are dealing with loosing their fertility. Some of us are experiencing hot flashes sooner than expected and some of us are dealing with issues that are difficult to talk about even with our physicians. 

Then there is the invisible scar due to worrying about a recurrence or waiting for the other shoe to drop. This scar is invisible to others most of the time. It is my own personal worry. Is that gas or bloating? Is that pain under my ribs from scar tissue or is It back? Why am I urinating more frequently? Most times I can talk myself back from the edge by telling myself that I have a plan which includes seeing my doctor frequently enough that if It does come back we will treat It quickly. Sometimes this scar does become visible as “scanxiety”. I am not a pleasant person to be around when it comes time to have a CA-125 blood test or a CT scan. Until the results are in and I get the all clear for 4 more months I am a nervous Nellie. 

I also have an invisible scar from loss. Being in the club of ovarian cancer survivors automatically brings along with it loss.  Support groups and involvement in local ovarian cancer organizations has afforded me the opportunity to share this journey with some pretty incredible women. We have helped each other along the way with hugs, phones calls, e-mails and laughs. But along with this joy there is the pain of their loss. Every death takes it toll. Would I rather to have never met these woman? No not at all. It was wonderful having them in my life. 

Those around us may think that since we aren’t in active treatment cancer no longer impacts our lives. But for those of us living with a cancer diagnosis and treatment may be sad or scared or nervous long after. We may put on a happy face to our family or friends because we don't want them to worry. Sometimes we can deal with these scars ourselves and sometimes we need help from support groups, social workers or therapists. We are not weak when we reach out for help  but rather we are exhibiting strength in recognizing these invisible scars. 

Dee 

Every Day is a Blessing! 

Missing Her Since 1995

On Monday, I read a post on the blog The Pink Underbelly titled "Blindsided". The author wrote about running across a hospice booklet she had received in 2005 when her mom was dying. She described being blindsided by the grief she felt.

On this gray and dreary day in NJ as I sat making out a check, I stopped to look at the date on my calendar - February 24th. I said out loud " Today would have been Bert's birthday" and I started to tear up. I didn't think my husband heard me but he came in from the study and gave me a big hug and I cried. It seems that you don't even need to find things to have the loss of someone touch you in amazing ways years later.

Roberta, who I called Bert, died in 1995 after fighting breast cancer for five years. I so wish that I could pick up the phone and talk to her like we used to. Except in addition to talking about our children we would talk about our wonderful son-in-laws and adorable grandsons. And we would laugh about how I went north instead of south on the Turnpike today.

Dee

Every Day is a Blessing!