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. 

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! 

It Is Worth It

 Last week, I turned to my husband and said “I’m so happy I am having lunch with M today. It is great to have a friend who is not an ovarian cancer survivor.  Hopefully we can be friends a long time. “ Then I got teary and said “I am so tired of making friends and losing them to cancer” He gave me a big hug, I took a deep breathe and walked out to the car to meet M.

On that day I was thinking of my friend S. W. whose funeral I attended the week before. I was thinking of her husband and her two teenage daughters. And I was feeling sad for the friend that I had lost. And I was a bit angry too.  I started to wonder if it was worth it spending time working on friendships that are ending so quickly.

S.W.  and I  were more than two women who had ovarian cancer and were treated by the same gynecologic oncologist.  Sure that is how we met but with time and effort a deep friendship evolved. It wasn’t easy. We both had family and advocacy commitments. She had work commitments and treatments. Yet we still made a point of checking in with each other on Facebook.  And we made a effort to carve out time to have lunch with each other. We worried about each other during super storm Sandy.  We celebrated the new car she bought and she shared with me how she hoped she would put lots of miles on that car.  We talked about the college tours she was taking with her daughter and how wonderful our husbands were. We were more than just two women with cancer. We were friends.

Then I started to think about the friends whose lives were lost due to ovarian cancer. There was Sharon who had the best sense of humor. She would have made a great stand up comedian. And then there was Rita. We used to stand outside after our support group and discuss college football never realizing how much time had passed.  I would meet Pam for dinner before our support group and she shared her love of Jimmy Buffet and traveling. One year we both went on cruises to Alaska and when she came back she gave me the best tips on what to see and clothes to bring.  There was Kim who loved wrestling. I still laugh when Fandago shows up for a WWE match on TV as I remember how she loved how he pronounces his name -  “Faaaan dangggggg OOOOOO”.  There was Deidre who helped me decorate a table for a Tea. I never asked her to help but she just jumped right in and brought things to add to the design.  I could go on and tell you about Gail, Ellen, Denise, Cindy, Jayne , Nicole , Courtney and Shirley. All of these women were special to me. They were special for their faith, courage and talents. I am not sure if our paths would have crossed if it were not for ovarian cancer .

One of the most difficult parts of being a cancer survivor is losing others diagnosed with the same disease. I‘ll be honest with you it hurts and it makes you very aware of your own mortality. But when I stop and think I realize that my life has been made richer because of these friendships.

Dee Sparacio

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! 

Yesterday - Happy and a Bit Sad

Yesterday was May fifth, Cinco de Mayo and it was also my son's 27th birthday. We were not able to spend the day together since he is studying for his PhD and living out of state. I was a bit sad we couldn't be together but it is actually pretty normal for us. In the past 6 years I think we were only together once. We have come to celebrate his special day when he is away with a text, a facebook post and gift sent by snail mail. Happy Birthday Matt!

Yesterday was also a big day for my son's girlfriend, Amanda.  She was graduating Summa Cum Laude from Auburn University. The ceremony was held in the arena but from the photos I saw it was a wonderful event. I'm sorry we missed the festivities. Congratulations Amanda.

Yesterday was The 7th Annual Teal Tea. The Teal Tea Foundation's mission is to raise awareness of Ovarian Cancer and to support research into an early detection test. Since moving to Mercer county I have become involved with the Teal Tea Foundation and in the past I was a  table captain. This year I attended and sat at a dear friend and fellow survivor's table.The theme was Under the Sea and our table was decorated with teal jelly fish.The table captain and decorators won two prizes for the beautiful design. I was so happy to be able to attend and support this wonderful foundation and see so many fellow survivors, caregivers and supporters .

Part of the Teal Tea's  program this year involved remembering four women who were supporters of the Teal Tea who lost their lives this year to gynecologic cancers.

Ann, Pam, Shirley and Rita Kay 

They were also members of the support group at CINJ that I attend and I have written about them and the group in the past. ( It Never Is Easy,  A Friendship Ended Too Soon, One Less Women of Teal - Rita Kay ). This is where the sadness came in to my day.

The first speaker was Ann's husband.  He spoke as photos of Ann and our support group flashed on the large screen behind him. Toward the end of her life when Ann was in a wheelchair Don would drive her and then sit in the waiting area reading. He recalled how he did not hear angry voices or crying but rather laughing and cheering. He told us how much the group helped Ann. I could feel myself getting upset and my eyes started to tear up. But then he read through the list of things that should remind us of  Ann. One of those things was seeing a grey heron. Well, the tears flowed freely as I thought about the grey heron I saw by the pond that morning and he was right I had instantly thought of Ann.

I met Shirley's daughter and granddaughter for the first time yesterday and I felt like I was in Shirley's presence once again. Love and respect were very important to Shirley as was her Faith. Shirley frequently spoke of her Faith with the group and how it helped her face so many tests and trials. When Shirley's daughter spoke she described her mom's love of her family and especially her grandchildren. And when I closed my eyes I could imagine Shirley back in the room and again my eyes teared up.

Then our social worker and the moderator of our group Julie was invited up to speak about Rita Kay. She described Rita Kay's work and wonderful sense of humor as well as her interest in sports and travel. But when she spoke of her being one of the initial group members ( like I am) and mentioned the signature neon green Crocks that she wore to almost every meeting the tears once again flowed freely. Sitting next to me was my gyn-onc. She rubbed my shoulder and asked if I was ok.  I turned to her and said " Not really but I will be". I took a few deep breaths- said my mantra ( With God all things are possible. ) and slowly looked up wiping away my tears. Julie ended her talk with what I and many of the women in the group have told her.  It is painful to loose so many friends to cancer but we would rather have the relationships we built at group then to have never known these women at all.

And she is 100% right about that.


Dee
Every day is a Blessing!