Mixed Feelings During Ovarian Cancer Awareness Month

September is Ovarian Cancer Awareness Month. 

There is so much more information available today for women to learn and be aware of the disease than back in 2005 when I was first diagnosed .Ovarian cancer organizations are doing awareness campaigns and raising funds for research this month and throughout the year. I makes me so happy to see graphics like these on social media. (NOCC, OCRA, Sandy Rollman Ovarian Cancer Foundation, Michigan Ovarian Cancer Alliance and  Norma Leah Ovarian Cancer Initiative. 

 

Don't get me wrong I am so happy there is a month to highlight Gynecologic Cancers and  Ovarian Cancer in particular. But being a survivor during this month can be difficult. It brings a wide range of emotions from happiness to sadness to feelings of anxiety and gratefulness. It doesn't help that September is also the month for my annual visit to see my gyn onc.

It is a time where thoughts of my diagnosis, recurrence and treatments are front and center - every single day. 

It brings back memories of what it felt like to hear I had stage 3 ovarian cancer. I remember the issues I had  recovering from surgery, all the side effects from chemo and trying to find a new way to live as a cancer survivor. I think about feeling good about having a normal CA-125 yet finding out that a  CT scan showed a recurrence. I think about the decision I made to do surgery first and then chemo when I recurred. I think about the time I spent in the hospital when I had a serious reaction to the Carboplatin I took during recurrence.  I think about my feelings while in the hospital when I realized that I could no longer use a treatment that was the best for me. 

I am sad when I think about women who lost their lives to ovarian cancer through these past 16 years as I continued moving forward:

Gail, Lois, Sandy, Grace, Erika, Pamela, Rita Kay, Carol, Jean, Janice, Terry W, Shari...

I think of the women I have spoken to as a peer to peer support person for Cancer Hope Network. There  are some I no longer have to call or email. The connections are strong even if the only thing we had in common was our disease.

I think of my fellow survivors who deal every day with side effects from treatment and fear of recurrence.  There are those who have had multiple recurrences and have had multiple different types of treatment We support each other because we "get it". Thank you to each and every one of them in my little network in NJ and online. 

 I am grateful for the gynecologic oncologists, nurse practitioners, social workers and pharmacist who treat women. And lastly I am grateful for all those researchers who chose to make their life's work understand how ovarian cancer develops and spreads and the best way to treat it. 

So as I work through these feeling during this year's awareness month, I wish you good health. 

Take care,

Dee

Every Day is a blessing! I am blessed to have family by my side through it all.

 

A Multitude of Feelings

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!

13 years? Yes it is.

I remember waking up from surgery on July 29th, 2005 to the words " You have stage 3B ovarian cancer". And then the words," I will do everything to make you well".

My life changed with those few words in so many ways. If you have followed this blog since 2007 you know that it hasn't always been easy. But I have made it through with the help of my outstanding physicians and nurses at Rutgers Cancer Institute of New Jersey,  the help of my best friend and husband Nick, the support of my children and their spouses, the love of my grandsons, supportive family and some of the best friends anyone could ask for.

Have there been side effects? Sure. Do I still have neuropathy in my toes? Yes. Do I still experience chemobrain? Yes. If I am multi-tasking my word recall diminishes dramatically which at times could lead to a few good laughs. Have I had some really stressful times? Absolutely. To this day, about a week before my scans and blood work, until I hear my test results, my anxiety level goes through the roof. Does my mind still go to cancer whenever I have an ache or pain? Honestly, even now, yes it does. Does it stay there for long? Usually not. 

But most of the time I am having fun living my life and trying new experiences. How can cancer bring you good things you ask? For me, having an ovarian cancer diagnosis lead me to become an ovarian cancer research advocate. I have been able to take part in projects to increase cancer research funding. I've attended medical conferences as a voice for ovarian cancer patients. I  have traveled to Chicago, Maryland, Washington, DC and Lisbon. I've been a panel member for three ASCO Guidelines, and co-authored a book and journal articles. ( And another one is in the works.) And I have met so many amazing patients, physicians, researchers and writers along the way.

And these extra years have let to new experiences too. There have been weddings, graduations, births and trips to some spots on my bucket list. I started painting when I was in chemotherapy and I continue to find it a very calming activity. I paint mostly animals - dogs usually but a few cats and birds too.  And I love painting quilts ( I'm not so good at sewing quilts but love the symmetry in the designs. ) After my recurrence, I learned how to do agility with my dog, Amber.  I'm not fast - Amber is- but I love spending time with Amber and being around people who love their dogs.

So thanks for taking this journey with me. And now a special shout out to Dr Lorna Rodriguez and Dr Darlene Gibbon. My life savers for making this all possible.

Dee
Every Day is a Blessing

Off Balance

A few weeks ago I was watching the TV show This is Us and the young character said she felt "off balance".

For some reason those words stayed with me. After the show ended I kept thinking back to how it feels to be "off balance". I will admit I have felt off balance many times after my cancer diagnosis.  It is a bit hard to describe how that feels but I'll give it a shot.

During treatment, I was not doing the things I had regularly done. I wasn't working. My husband and daughter cleaned the house, went food shopping and made all the meals. I learned over time that it was OK to put myself first and to ask for help. But it took some time to get that balance back.

There were times when I was in treatment when I would go out with long-time friends for dinner. I was happy to be there, yet I was off balance. I sat there with my scarf on and looked at their hair. I heard them talk about making plans for vacations or redesigning their kitchen or complaining about traffic. But I was in treatment. It didn't feel right to share how I felt so exhausted that I didn't get out of bed for two days. How my scalp actually hurt - as if my hair had been in a pony tail for days. It was like I was watching them from afar. Maybe I was a bit jealous that they could make plans because I wasn't planning past my next chemo treatment. It was like I couldn't be in the real world while I was in the "cancer world".

Then I finished treatment. Great. I should be happy. And in a way I was but at the same time I was scared. So I was off balance again. I could never go back to normal so I would have to find a new normal. But what was that? I tried but never achieved the old normal. But eventually I had a good new normal going along with the occasional bout of anxiety over CT scans , Ca-125's and doctor appointments.

There are times to this day that having had a cancer diagnosis makes me feel off balance. When I hear of a women I call friend who will be entering hospice or when a clinical trial I hope will show amazing results in treating ovarian cancer comes back equal to the current treatment I feel off balance.

I am thankful for my health care team, my husband, family and friends who help me get  my balance back.

Dee
Every Day is a blessing! 

That Feeling You Get When You Hear the Word Cancer

The other day, a women in one of the ovarian cancer Facebook groups, asked the group "How did you feel when you heard the words - You have Cancer?".

As I approach my "cancerversary" I thought I would share how I felt when I heard those words.

I had been referred to a Gynecologic Oncologist after I told my gyncecologist at my annual visit about pain in my left abdomen and an MRI showed my ovaries were enlarged. I was just shy of my 50th birthday and I thought at the time perimenopausal. 

Leading up to my gyn onc's recommendation that I have surgery we talked about what could be causing the enlarged ovaries. Yes, she did tell me about the possibility of it being ovarian cancer but at the time I thought if I would get a cancer it would be breast cancer. My sister had been diagnosed with breast cancer in the the late 1980's. At the time I didn't know about the BRCA mutation connection between breast and ovarian cancer or much about ovarian cancer at all. But I did have a family  history of cancer.  My mother, father, aunt, and uncles in addition to my sister had received a cancer diagnosis. So it  made sense that I could have cancer. Yet somehow at the time I thought that this was NOT going to be my diagnosis.  Or maybe I didn't want to think about having to deal with the treatments that would certainly follow my surgery.

When I woke up from surgery and heard the words you have Stage 3 ovarian cancer I said "OK" and then I told my gyn-onc that I didn't want my treatments to disrupt my family's life. I wanted them to continue with their lives - school, hobbies, work. That was the first thing I thought of. Maybe it was the anesthesia that numbed me to what I had just heard. When I got transferred from recovery to a hospital room and my family had all gone home for the night that is when it hit me.

Oh my God, I have CANCER!

I was laying down in bed at the time, still pretty drugged up and not really able to move much at all.  I felt a strange sensation of my legs feeling weak. I don't know if I would have actually collapsed if I had been standing since I have only felt it when I was already sitting or laying down. I was always alone and it was late at night. I felt it when I let my mind wander to that space where I considered that this cancer would kill me. I have described it to others as my Weak in the Knee reaction.

There was so much I didn't want to miss and so many things I needed to do and experience. I wouldn't be there when my children married.I wouldn't see my son graduate college.  I wouldn't meet my grandkids. I wouldn't visit all 50 states.(I had 21 more states to visit at the time.)I'd never get to visit Australia or Europe.  I wouldn't be doing any of this. Then I thought of my family. What would it be like for my husband and children? Emotionally, I was despondent.

While I can remember how I felt, it is hard for me to remember how I was able to recover from the Weak in the Knee feeling or what prompted me to become more hopeful. I know I began using a mantra to stay calm during all those medical scans but I don't recall when I started using it. Maybe the sun came up.  And with the start of a new day, I became hopeful.


If you were diagnosed with cancer, how did you feel? Physically? Emotionally?

I will sign off as I always do, 

Dee
Every Day is a Blessing!

I feel so ...

I know I haven't posted in a while. Actually, I've been working on this post for a while editing and adding to it. 

A few weeks ago a very dear friend's husband passed away from prostate cancer. I knew he had no treatment options left but it still came as a shock to me. He had been a vibrant 61 year old who had retired to spend time with his wife, children and grandchildren.

It sure didn't seem fair. Cancer does that - it takes good people. Don't get me wrong I am sure it takes the lives of not so great people too. But it is torture for those with cancer and those on the journey with us.

My first thought when I heard the news was what it would be like for me if my rock, my husband of 37 years, passed away.  I don't know how I would handle it. How could I get through a funeral. And then what would happen the first time I couldn't open a jar or move a piece of furniture ? Or what happens when I feel sick and still have to walk Amber in the rain or snow? Or how do I make meals for one?

But them another odd feeling came over me. How could I face my friend.  How could I, NED for 5 years since my recurrence face my friend. Would she look and me and think - why are you still here and my husband is gone?

I felt wary of going to the wake and seeing her for the first time since her husband's death. I hesitated getting out of the car and entering the funeral home. I  waited on line and finally reached her two sons. They called me by name gave me a hug and thanked me for coming. Then I moved over to my friend. She teared up - and so did I as we hugged and I told her how sorry I was. Then she told me that she prays for me every day because having cancer sucks.Yes, it sure does. But she wasn't angry at me and that made me feel so much better.

But I continued thinking about my friend and her husband and even mentioned them during my monthly gynecologic cancer support group. When it came to my turn to update everyone I told the group how unnerving it was for me, a survivor, to face my friend when her husband died. Then I asked the women, a majority are currently in treatment, if it was OK for them to hear my reports on being NED.  At times I felt guilty about being in good health among all these women struggling to make treatment decisions and dealing with side effects. Every single one of them said they were happy I was at the group and that my presence gave them hope. Those words brought tears to my eyes and I could once again bury my survivor's guilt for a little while longer.

Cancer changes your life and your outlook on life in more ways than you can imagine.

Dee
Every Day is a Blessing!

The Only Constant in Life

is Change!

The most recent change which makes me feel happy and sad at the same time involves a person who has played an important role in my journey with ovarian cancer.

Early last week I learned J, a social worker at my cancer center, was leaving. I am happy because she is making a move that is so wonderful for her and her family. But I am still sad because I will no longer see someone who has made my cancer survivorship easier.

J took care of the gynecologic cancer patients and facilitated the Gyn Cancer Support group. She has been instrumental in the success of this group for more than seven years. Because of her expertise as a social worker, she knew just when a patient needed the support of others and that is when she would tell them about the  support group and ask them to join us.

She also was involved in a number of patient programs at the cancer center including Survivors Day.  I served on the Survivors Day Planning Committee with her for a few years so I was able to see her creativity, her efforts to make the day special for patients and how well she got along with other cancer center staff and other survivors.

J was always there for me. I used to call her J- 911. If there was an emotional need all you had to do was call J-911 and she would be there with all the advice you needed to get you through the rough spots.  She was especially helpful to me when the deaths of friends in the support group deeply affected me. After seven years she was more to me that just a social worker she was a friend.

I wish only the best for J.


Dee
Every Day is a Blessing! J was such a blessing to me. 

Losses and Friendship

friend

noun \ˈfrend\

: a person who you like and enjoy being with

: a person who helps or supports someone or something (such as a cause or charity)

 

 

That is the definition I found in the online Merriam-Webster.com dictionary. 

Since the day before Thanksgiving four women I know have died due to ovarian cancer. Only one of them have I actually met in person and that was only for about an hour. But I reacted to their deaths as if they were friends from work or church or my neighborhood.

I have heard people remark that you can not be close to people you only know online and you can't be friends. I will admit I get a bit annoyed when people say that. Three of the women were members of two different groups for ovarian cancer survivors on Facebook and one I met on Twitter first and then friended her on Facebook and eventually met her in person. One woman lived in Engand. Another was the mother of Cynthia ( also an ovarian cancer survivor). But for me my online friends fit the second friend definition of "helping and supporting someone." These women were no different than women I have met in person at various ovarian cancer awareness or education events. or at conferences or courses. Afterward we stay in touch through e-mail, support groups or phone calls.

We meet because of our disease but bonded as we supported each other and shared information about treatments, side effects or  how to emotionally handle the stress of scan time. And as with other friendships along the way you learn other things about the person such as the shows they like to watch on TV, books they like to read, where they were born, what work they do, where they went to college and what their hobbies are. So it really is the same process of building a friendship as if you had met in person.

I value each and every one of the women I have met in person as well as those I only know on social media. Our numbers are not as large as those diagnosed with other cancers but we are strong and want to make connects in person and online and their is value to both.

RIP - Benita, Cheryl, Elaine, Barbara I was honored to have known you.


Dee
Every Day is a Blessing!



Well