STRIDE Dashboard Launched

Since my diagnosis, I have followed the statistics for those diagnosed with ovarian cancer. When I was initially diagnosed in 2005,  ACS estimated that the number of women diagnosed with ovarian cancer in NJ would be  ~ 700.  But I often wonder if the number has changed since I was initially diagnosed. I also wondered  where women diagnosed with ovarian cancer lived in NJ.  Were women in some counties being diagnosed more frequently than in other counties? What about women diagnosed with cervical cancer or endometrial ( uterine ) cancer? Did their diagnosis vary by county?

I recently received an email from Dr Anita Kinney (Director of the Cancer Health Equity Center of Excellence)  announcing the launch of the STRIDE Interactive Data Dashboard by the Rutgers Cancer Institute of NJ Community Outreach and Engagement Team and the Cancer Health Equity Center of Excellence. 

"Surveillance, Tracking and Reporting through Informed Data Collection and Engagement (STRIDE) is an interactive data and visualization dashboard (public and institution versions) that includes clinical trials enrollment, biospecimen inventory, tumor registry analytic cases, catchment area information related to the cancer burden, behavioral and environmental risk factors, and demographics.

Features include :

"Cancer Surveillance: Incidence and mortality rates on state and county levels. Cancer screening rates and risk factors are also featured on STRIDE.

User Input Customization: Users can easily filter data to create interactive visualizations. 

Interactive Mapping: Interactive maps include census tract level population and environmental data."

To access the public side of the website please visit  https://published.cinj.rutgers.edu/content/86251f79-09a0-4c9a-b388-361e700af7bf/

I used the site to find data for cancer of the ovary incidence and mortality rate in NJ and downloaded this graph.

 

 

I invite you to check out STRIDE as well as the NJ Cancer Registry website ( https://www.cancer-rates.info/nj/) for information such as incidence per county in map form. I grabbed a screenshot of the cancer of the ovary Incidence Rates (2000-2018). As you can see some counties have higher incidence rates of cancer of the ovary than others. Similar maps will be available on STRIDE.

 

Then I looked at cancer of the cervix for the same years and you can see how the incidence rates in the counties differ from ovarian cancer.

What measures can we take to reach people to raise awareness and treat those diagnosed in those counties?  What causes those counties to have higher rates? Environmental issues?  Socio-economic issues? 

This data will help researchers target areas of my state where services and education need to be increased. 

Does you state have cancer data sites like this one? 

Dee 

Every Day is a Blessing!

Hurricane Sandy's Impact on NJ's Cancer Patients

Note: My home has made it through Hurricane Sandy with only minor damage to the roof. We are lucky to have power, internet & cable and our water is drinkable. Most of my relatives who live in various parts of the state of NJ are without power and many without water.  I have relatives and friends with homes on LBI, in Seaside Park and Ocean Beach III and Long Branch. Some know their homes are still standing while others have no idea.  We try to check out aerial photos for shots of their location since they are unable to get to those locations. I have another friend with a home in Monmouth Beach who had water up to their second floor and the home is now uninhabitable. But every single one of them is alive and safe. Thank God. 

Sandy was a huge storm affected almost 1000 miles of the northeast. But Sandy's impact on the lives of cancer patients is far reaching too. 

My cancer center, The Cancer Institute of New Jersey(CINJ)  is located in New Brunswick, NJ four blocks from the Raritan River. Sandy caused the Raritan River to flood its banks. The city was closed. Even Rutger's University located there is closed. I can count on one hand the number of times Rutgers has closed in its 200+ year history. There is a boil water advisory in affect and only essential and hospital personnel were allowed into the city. Power is out and public transportation is closed down.

Last night on facebook I read this post by CINJ. 
"Due to the hurricane, The Cancer Institute of New Jersey will be closed until Monday November 5th. Please share this as we are unable to distribute notification through email and on our website. Patients will be contacted directly. "

Robert Wood Johnson University Hospital RWJUH( located across the street from CINJ and its affiliate hospital) posted this:
"Important Announcement for all UMDNJ staff and patients:
UMDNJ has announced that they are cancelling all outpatient services for October 31, November 1 and November 2.
Patients and staff of UMDNJ should continue to monitor University communications outlets for updates.
 " 

The radiology group , University Radiology Group where I have my scans done posted this:

"Because of storm-related power outages, our offices will be closed Wednesday morning, October 31st until noon. We will be closely monitoring the outage situation during the morning hours. If power is restored to any of our facilities, we will re-open that office Wednesday afternoon. Status updates will be posted to this web site page, Facebook and Twitter when possible. Our staff will also be calling you to reschedule/confirm your appointment. " 

Those are pretty dramatic effects of the storm. 

I have or should I say had,  an appointment  for a port flush for tomorrow at 11:30 am. I get one every 6-8 weeks so I have a window in which to get it done. I am not too worried.

But I am thinking about my friends who are in treatment for recurrences. I think of all the cancer patients adults and children in treatment  in the region who are missing a dose of chemo or radiation or are unable to get a blood test. Maybe their facility is closed or  they can't get to treatment because roads are closed.  When Katrina hit New Orleans in 2005 I had just started my chemotherapy. I remember thinking how terrible it would be to miss a chemotherapy treatment.After all I needed to kill this cancer. And here is the same situation happening in my home state. On Sunday morning I had packed some things in case we needed to leave our home. The first thing I took out was my treatment binder - with surgical and CT reports and drug information. 

One ovarian cancer survivor I know had an appointment yesterday for a CT scan to see if she was back in remission and done with chemotherapy. She now has to wait. I feel that waiting and not knowing what is going on is one of the hardest things to deal with when diagnosed with cancer. 

This storm was unprecedented. I know the hospitals and cancer centers are doing all they can for their patients under the conditions they have experienced. 

 Back in 2006 I missed two treatments due to low platelets. At first I was upset but I rested, watched TV, painted and was ready to go the next week. So if you are reading this page and are missing a treatment, you may not be able to watch TV if your power is out I just know you will be ok. 

Dee

Every Day is a Blessing! 

 

One Less Women of Teal - Rita Kay

When I was in college  in the early '70's I met this really awesome woman. She was the Rutgers assistant athletic director. This was the time when the first few classes of  women were first accepted into Rutgers College. I was affiliated with Rutgers College while I studied at The College of Engineering ( as it was called then). I was also on the men's lightweight crew team as a coxswain. Ms Thomas felt strongly that the women should have their own team and fought hard to establish a women's team and it happened a few years later. Although I was invited to be part of the newly established women's program I continued with the men's team all four years.   I graduated and Ms Thomas  stayed on at Rutgers . She played a crucial role in developing  some of the best women's athletic programs in the country at Rutgers - from crew to golf to volleyball to basketball, soccer and field hockey.

Then about five years ago at a Gynecologic Cancer Support Group meeting at the Cancer Institute of New Jersey there she was,  Ms Rita Kay Thomas. But we were in a different fight this time.  We were fighting late stage Ovarian Cancer together. Rita Kay and I were in the same selenium clinical trial so we would compare notes about side effects, low platelets etc and laugh about all those darn Pk blood draws. She wore her signature straw cowboy hat to meetings. Sometimes she would add a long green wig or silly glasses with a big nose and bushy eyebrows.  She was always ready to use humor to help the other women overcome their nervousness and anxiety.

We both entered remission from the ovarian cancer.  But a little while later she faced another challenge, a breast cancer diagnosis.  She shared with the group the decisions that she faced about surgery and radiation .  We listened, prayed and  supported her choices.

When I recurred in 2008 and had surgery on my liver and spleen , she and her partner visited me in the hospital. What did we talk about? Rutgers sports of course and RU football in particular. I was sad I would miss going to a bowl game that year . She told me not to worry because there would be more Bowls to attend in the future. I wasn't feeling too sure of that at the time but Rita Kay was sure.

In 2009 Rita Kay and I were asked to honor our gyn-onc at the CINJ Gala. We both jumped at the opportunity and had a fun time.

In 2011 the crew teams at Rutgers honored Rita Kay by christening a shell in her name. So if you ever see the Rutgers crews rowing on the Raritan look for the shell named the Rita Kay.  

I knew when  Rita Kay was not able to attend the first  Rutgers Home Football Game this year that she was not feeling well. I spoke to her on the phone the next day. I did not want to give up hope that a new drug or procedure or clinical trial might be in the wings waiting to perform its magic on Rita Kay. Just as she had performed magic for so many women athletes at Rutgers. Sadly that was not to be and Rita Kay passed yesterday morning.

I was blessed to have had Rita Kay in my life.  I will miss her yellow crocks, her great sense of humor,  her straw cowboy hat and her love of a good beer. But especially I will miss my half-time walks at RU homes games from 224  down to section 125 to say hello.

Sadly,
Dee

Every Day is a Blessing!

OC Awareness #23 - GRACEful Hope, Passionate Advocates

Last night my husband and I had the pleasure of attending the 2nd Annual GRACEful Hope Benefit for Ovarian Cancer Research at the Sport Clube Portugues in Newark, NJ.  Over the past year or so I have followed and shared information on my Facebook page about GRACEful Hope events and was honored when they asked me to attend the Benefit and to tell my story.

Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20.  But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.

I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that  GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.

I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."

What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.

Dee
Every Day is a Blessing!

Panera Bread's - Operation: Lemon-Aid for Kids

I love the soups, breads and salads at Panera Bread. And I especially like that some of the Panera's in NJ are part of an event to raise funds for the Cancer Institute of New Jersey's ( CINJ) Division of Pediatric Hematology/ Oncology.

The Operation: Lemon-Aid for Kids event takes place on July 21st from 10am to 2pm.   Panera Bread will offer their 9oz  delicious ( I love their lemonade) to customers who donates $1 to CINJ. Check out this Panera Bread web page for locations involved in the event.

You might just see me at the North Brunswick store.


Dee
Every Day is a Blessing!

Survivor's Day at CINJ

For the past few months I have had the privilege to have been a member of the  Survivor's Day committee at The Cancer Institute of NJ(CINJ) .  The theme for this year's event was iSurvive...  iThrive.

Yesterday as patients came through the revolving door at CINJ they were greeted by the nurses, doctors researchers and staff . There were many hugs and hand shakes and "it is great to see you" .
The day began with some participants taking part in a tour of two research laboratories .
Then the break-out session started in rooms throughout the center. Here are some of the topics the patients could choose from:
 iTailor Treatments- the science behind personalized medicine
iIntegrate- complementary medicine
iParticipate- the importance of clinical trials
iGraze- healthy eating
iBreathe- letting go of stress
iMove- activity during and after treatment

I attended the iIntegrate and iMove sessions. Meg McQuarrie from the Elixir Fund spoke about meditation, acupuncture and yoga and other forms of complimentary medicine but the best part being able to learn some Jin Shin Jyutsu moves. I know I can easily put what I learned to practice.

The iMove session with Lexi Anderson from the LiveSTRONG at the YMCA and  Dr Coups a behavioral therapist from CINJ explained how patients should not be sedentary during and after treatment but that we should try to be active every day. The goal is to reach 150 minutes per week of moderate activity. They explained that activity does not have to necessarily be a sport , like tennis or basketball but could include walking, gardening, riding a bike, swimming and even cleaning the house. They also said the150 minutes does not have to be in 30 or 40 minute chunks of time but 10 minutes here and there throughout the day are helpful too.

After the sessions we all went over to the atrium of Robert Wood Johnson University Hospital for an interactive lunch. After a brief exercise session by LiveSTRONG at the YMCA,  Panera bread demonstrated how to make a healthy salad. Thanks Panera for the delicious food.

I saw many fellow ovarian and breast cancer survivors and their caregivers a well as many of the nurses and receptionists I know from the clinic. But I think Dr Susan Goodin , Associate Director of Clinical Trials said it best a lunch Survivors Day for  her is like a "family reunion."Indeed, it was.

Dee
Every Day is a Blessing!

Cancer and Obesity

Yesterday, I attended the 2012 Annual Retreat on Cancer Research in NJ at the University of Medicine and Dentistry of NJ Medical School in Piscataway. The conference was presented  by the Cancer Institute of NJ (CINJ) and the NJ Commission on Cancer Research. This year's sessions for medical professionals focused on areas such as Cell Death, Genomic Instability,Tumor Progression, Cancer Pharmacology, Preclinical Therapeutics and Clinical Investigations.

I attended the Public Forum again this year.( Last year's event was on Survivorship.)  The forum was titled Kids and Cancer:  the Obesity Connection but it offered information about adult obesity too.

After welcoming the standing room only crowd Peter Gillies, Ph.D, NJ Institute for Food, Nutrition and Health shared these facts.

• 1 in 3 children are obese
• 2 in 3 adults are obese
• We spend 190 Billion dollars a year because of obesity
• NJ is one of the worst states in the US in terms of obesity

John Milner, Ph.D, Chief Nutritional Science Research Group at the NCI, was the keynote speaker. What an informative lecture ! He spoke about the myths of cancer and obesity with facts and studies. Here are a just few myths he mentioned:

• Risk of obesity has plateaued Not true- obesity in the US will continue to increase unless we do something now.
• All people are equally susceptible to obesity . Not true. African Americans are more prone to obesity than Hispanics who are more prone to obesity than Caucasians.
• We all respond identically to food items. Not true. In studies some people who used olive oil gained weight , some people lost weight.
• Food availability and not genetics makes me eat Not true. Sure having lots of sweets available in our environment may make us eat more of them but how our individual bodies break them down , use and stores them may be genetic.

There are many things that influence obesity. The amount of food we eat, the types of food we eat , the amount we exercise, our genetic make-up including hormone level are important so controlling our weight ( loss or gain ) should be approached in a more personalized manner. One diet does not fit all.

Dr Milner's talk was followed by these related topics.

• Elisa Bandera, M.D., Ph.D an epidemiologist from CINJ spoke about Childhood Obesity and Timing of Puberty :Implications for Future Health and her current study Jersey Girls. Jersey Girls hopes to answer the question whether or not girls with earlier puberty become obese? 
• Chung Yang, Ph.D ( Rutgers University) clarified  Does Vitamin E Prevent or Promote Cancer in his studies of Vitamin E (Tocopherols). He  found that Alpha molecules like those found in vitamin E tablets were good nutritionally but failed to prevent  cancer while the gamma and delta molecules showed preventative properties.  
• Tracy Anthony, Ph.D (Rutgers) introduced Dietary Macro nutrients and Their Influence on Appetite and Weight Control with how the USDA guidelines for good nutrition have changed from the food pyramid to MyPlate. She spoke about amino acids, which make up proteins like leucine,  and their role in good nutrition and the need to spread out our protein intake throughout the days meals not just at dinner. 

After the talks were complete, I spent time looking at posters on CD-44 and Vitamin D,  chronic care and health beliefs in older breast cancer survivors, and sun protection and exposure behaviors among Hispanics.

On my drive home I reflected on all the information I had heard from NJ's very own researchers. What a benefit it is to live in a state in which there is such a wonderful collaboration between CINJ cancer center researchers and academic researchers especially those at Rutgers University ( my alma mater).

Dee
Every Day is a Blessing!

Precision Medicine at CINJ

Recently there has been a stress on personalized medicine in the treatment of cancer. We know that cancer although the same type, such as epithelial ovarian cancer ( the most common ovarian cancer), may vary from patient to patient due to the cancer's unique molecular makeup.  Standard treatment that may work for one woman may not work for another and the cancer will progress. What is needed is an understanding of the molecular and genetic makeup of each individual's cancer to best treat the disease.

The Cancer Institute of New Jersey has begun an initiative called Precision Medicine. This initiative which includes the use of bioinformatics will allow researchers to collect both clinical and genetic information to determine diagnosis, prognosis and best course of treatment in a more targeted manner than in the past. This is good news for cancer patients.

What makes me especially happy is that this initiative will be lead by Lorna Rodriguez, MD, PhD  chief of gynecologic oncology at CINJ since 2000, one of my gyn-oncs and lead investigator of the selenium clinical trial I participated in. It is because of her many investigator-initiated trials into cancer metastasis and drug resistance that makes her the perfect person to lead this research.

To read further about this program please click here.

Dee
Every Day is a Blessing! I am especially blessed to be treated at a center that is at the forefront of cancer research.

World Cancer Day

Today is World Cancer Day! A day to raise awareness , prevention and treatment of cancer throughout the world.

What will I do?

I will donate to my Celebrate Hope campaign to raise funds for OC research at the Cancer Institute of NJ.

http://cinjfoundation.donordrive.com/index.cfm?fuseaction=donorDrive.eventDetails&eventID=525

Dee

Every Day is a blessing

Celebrating Hope and Giving Back to The Cancer Institute of New Jersey

In July of 2005, I heard the words “ You have Stage 3 ovarian cancer”. My gynecologic- oncologist at the Cancer Institute of New Jersey ( CINJ) told me that I should not look at the survival statistics for ovarian cancer because statistics are just that statistics not individuals. Then she told me she would do her best to make me well.

Well, here we are in 2012 almost seven years later and the doctors at CINJ have made me well not just in 2005 but again in 2008. Currently, I am disease free. I am certain that taking part in the CINJ clinical trial lead by Dr. Lorna Rodriguez and the outstanding treatment and follow-up care by Dr. Darlene Gibbon has made the good health I experience today possible.

In the past I have asked you to donate to other organizations in support of ovarian cancer awareness and research. This year during the month of February, Ovarian Cancer Awareness Month in New Jersey, I am asking you to directly support the ovarian cancer research that is taking place at CINJ by donating to the Cancer Institute of NJ Foundation through my personal fundraising campaign. I hope to raise $5000 so the doctors and scientists can continue their research to better understand ovarian cancer, develop new treatments and find a cure .

As a special thank-you, I will mail a note card of my painting called “Hope” to the first forty-five donors. You can see a photo of the note card on my donor page at

http://cinjfoundation.donordrive.com/event/deesparacio/ . If you prefer you may also go to that page and print out a form and mail in your donation.

Thank you in advance for your donation.

Sincerely,

Dee

PS- The relative five year survival rate for late stage ovarian cancer is 30%. )

Dee

Every Days is a Blessing!

An Early Christmas Gift-Hope Concert V

Lately , my husband and I have had a difficult time coming up with Christmas gifts for each other. So a few weeks ago when I heard about the Hope Concert V to benefit CINJ ( where I have been treated) we decided that would be a good gift to give to each other and a gift to those very people who have helped keep me alive to be here to celebrate Christmas 2011.

What a fun gift it was.

After eating a delicious meal at TEAK in Red Bank, we headed over to the Count Basie Theatre. The event was sold out. I did manage to run in to my gyn-onc and her husband and friends and the head of communication and her husband.

The Count Basie theatre is a smaller venue and our seats were perfect - end of the row , in the back but with a clear view of the stage. The show began with an introduction to CINJ through its video " What Does a Minute Hold at CINJ". I admit that I got a bit teary eyed as I saw nurses and doctors who played a roll in my treatment. And I was thrilled to see the $175,000 check presented to Dr Di Paola, director of CINJ and my friend Leanne Kochy , Director of Special Events for the CINJ Foundation. Also on stage was Ed McKenna , a CINJ Foundation Board member, who I had met a few years ago at the CINJ Gala.

Now back to the concert. The list of marvelous entertainers and musicians who donated their time included Tim McLoone and the Shirleys, Brian Fallon,Nicole Atkins, The Jersey Shore Rock-n-Soul Revue, Bobby Bandeira ( who helps organize the performance) , Gary U.S. Bonds , South Side Johnny and drum roll please .... Jon Bon Jovi! Yes, folks he is alive and well . He even joked that if he were dead then "Heaven looks a lot like New Jersey"

I apologize for the quality of the phone video.

We sang and clapped and stood and danced during the performances. I still can't decide if my favorite Bon Jovi song was "Who Says You Can't Go Home" or his rendition of "Blue Christmas". A fabulous time was had by all.

I want to send out a special Thank You to each performer , the stage hands, sound and lighting crew and the Count Basie Theater for volunteering their time and facility to support CINJ this year. There is a nice article about the concert here.

It sure was a fabulous Christmas present . Thanks Nick

Dee

Every Day is a Blessing!

Published!

The Fall 2011 Oncolyte, a publication of The Cancer Institute of New Jersey (CINJ), contains an article I wrote about my experience at the ASCO conference in Chicago in June. Click here and then go to page 9 to find my article.

Thanks to CINJ for allowing me to share my experience.

Dee

Every Day is a Blessing! I have been blessed by the compassionate care of the gyn-oncs and nurses at CINJ.

High Five plus 1

As many of you know, last year I participated in the High Speed Chase for the Cure to celebrate my 5th cancerversary. I wrote about it on this blog in July and September. I walked to honor my doctors whose excellent care has helped me fight Ovarian Cancer twice.The High Speed Chase raises funds for the Cancer Institute of New Jersey through the CINJ Foundation. It takes place on the Livingston Campus of Rutgers University.

Recently, I received an e-mail from the Foundation which said" Due to a major construction project on Livingston Campus, we are not able to host the event this year, but hope you will still wish to support the patient programs and research at CINJ that this event has funded for the past 8 years."

Instead this year the High Speed Chase for the Cure is going virtual. I've decided that once again, I want to honor the doctors & nurses who have been my "lifesavers" for six years. Funds raised are used for patient programs like the Gynecologic Cancer Support Group which attend and for cancer research.

I've formed a team called "High Five Plus 1"and will be raising funds virtually. But I also plan on walking through downtown Hightstown and around Peddie Lake on Sunday, September 18th . I'll be leaving my house around 9am. (Please note that I will postpone this walk if Baby G arrives early.) If you want to walk with me on the 18th sign up to be on my team by going to the High Five plus 1 team page.

If you can't join me on the 18th, please consider donating here to help me reach my fundraising goal. Thanks for helping me help further Ovarian Cancer research.

Dee

Every Day is a Blessing!

Prostate Cancer Clinical Trial - Selenium

You may remember that I was in a clinical trial using Selenium with Carboplatin and Taxol for treatment of ovarian cancer.

Research into selenium and various cancers continues at CINJ. I received this e-mail about a clinical trial at CINJ that will study selenium to reduce the risk of prostate in men.

Healthy male volunteers needed

Researchers at The Cancer Institute of New Jersey (CINJ) are studying the role of the mineral selenium in reducing one's risk for prostate cancer. Consider taking part in this study...and join the team!

CINJ researchers are trying to see if selenium yeast or selenomethionine lower
prostate-specific antigen (PSA) levels and prevent other markers related to the
development of prostate cancer in healthy men of different age groups.

Participants will be asked to take over-the-counter selenium supplements or a placebo
for twelve months.Five visits to CINJ are required during the study, where blood and urine samples will
be taken.

Compensation is provided.
You may be eligible to participate if you:
Are a healthy male between 20 and 79 years
of age
Have no evidence of prostate cancer
Are a nonsmoker
Can visit CINJ five times over twelve months.

To see if you are eligible for this study,
contact Michelle Orlick at 732-235-6048 or
orlickmi@umdnj.edu.

Dee
Every day is a Blessing!

For Men over 40 - Free Prostate Screening

I am usually writing posts for women with ovarian cancer but I want to share something for the men in our lives.

FREE Prostate Screening New Brunswick, NJ

Monday, September 19, 2011 Tuesday, September 20, 2011 Wednesday, September 21, 2011 5 pm - 8 pm Screenings are free, but an appointment is required.

To schedule your appointment for a screening, please call1-888-MD-RWJUH (1-888-637-9584) Screenings will take place at The Cancer Institute of New Jersey 195 Little Albany St., New Brunswick, NJ 08903 For more information, please visit www.cinj.org/prostatescreenings or call 732-247-2050

Thank you CINJ and the RWJUH for offering this screening for over 10 years.

Dee

Every Day is a Blessing!

To See HeLa Cells and Read about Them

Last month when I attended Survivors Day at CINJ, I visited Dr Scotto's lab. At the end of the tour, Dr. Scotto told our group that she had set up a microscope so that we could view HeLa cells. HeLa cells are the cancer cells from Henrietta Lacks. I was thrilled to actually see these cells that in the right growth medium will continue to grow and replicate... and grow and replicate ... and grow and replicate . I remembered reading news articles about these cells and how they have been used for years in medical research from HIV to polio to cancer. Alongside the microscope was a copy of The Immortal Life of Henrietta Lacks by Rebecca Skloot.

A few days later I bought a copy of the book and began reading Henrietta's story.The book's author researched Henrietta and her family. Henrietta was a black woman who lived in Baltimore and died in 1951. But it was not until 20 years later that her family knew that HeLa cells were from Henrietta's cervix. The doctors never asked Henrietta or her family if they could take and use the tissue samples. The initial research happened before there were government regulations guarding our privacy and tissue use. I wish that more people knew her story and her cell's role in understanding so many diseases in the past 50 years. And her cells potential to help us understand so many more diseases will continue since researchers may purchase these HeLa cells today from ATCC, a private non-profit biologic research center.

When I entered my clinical trial I was specifically asked whether or not I would allow my tissue to be used for research. It is not easy learning you have cancer. Being given an opportunity to possibly help other women by allowing researchers to gain a better understanding of the disease by studying your cells, that was easy.

Thank you, Henrietta.

Dee

Every Day is a Blessing! I highly recommend that you pick up a copy of The Immortal Life of Henrietta Lacks and read it.

Gearing up for ASCO

For the past 2 months I have been preparing for the American Society of Clinical Oncologist (ASCO) Annual Meeting in Chicago. I am attending as part of the Research Advocates Network(RAN) Focus on Research program . I appreciate the opportunity RAN is providing me to hear the latest research results. My goal and the goal of the Focus on Research Program is to disseminate the information learned about cancer research. For myself I am concentrating on ovarian cancer research lectures and poster sessions. I want to thank Dena O’Malley and the Center for Cancer Survivorship at the Cancer Institute of New Jersey for being my dissemination partner.

I have been attending webinars on Biomarkers, Drug Development and Cancer Pathways and reading manuals on genomics. At times I felt like I was back at Rutgers in the Intro to Biochemistry class. I needed to relearn how cells replicate, the structure of DNA and RNA, and clinical trial design. I admit It has been a bit of a challenge . Chemobrain seems to have affected how I learn and recall information. It requires me to listen, take notes, reread and review the slides from the lecture and still at times it takes me a long time to recall the proper names. Throw some unique acronyms on top of it and at times I feel I am talking alphabet soup. But I think the extra effort will pay off in the days ahead.

I have found recently that the media, internet , TV and print , tends to run with stories of agents that can cure cancer or raise or reduce risk without putting the results in perspective. This may raise hopes for patients when in fact the drug/agent is many years away from being used on humans. Rather we should ask: Was the research on animals or humans? Has the drug/agent finished clinical trials?How large was the study? How expensive is the agent/drug/screening test. How long until the agent is available?Many times groups push for a screening test for the general population that really does not fit the criteria of being specific and sensitive. My plan is to post an update every day from the Conference but in the weeks ahead I will follow up with more detailed information which hopefully will answer the questions I posed above .

The other bonus of this trip is meeting other research advocates from around the world.

Can’t wait for the sessions to begin tomorrow!

Dee

Every Day is a Blessing.

Always There for Me

Yesterday I took a ride up to the Wellness Community Central Jersey ( TWC) to visit with Ellen Levine, the program director. Ellen and I go way back. Well, way back when it comes to my cancer journey. Ellen used to be the Director of Social Work at CINJ where I was treated.

I remember the first time we met. Patients in treatment at CINJ can attend programs offered by different departments at CINJ that educate and support cancer survivors. So one day in November of 2005 my IV pole (chemo attached) and I took the elevator up to the 2nd floor for a workshop on how to get through the holidays when you have cancer and are in treatment. Ellen ran the program that day and talked about food, interacting with family and prepping for the holidays. Instead of feeling guilty about not being able to do the things we usually do at the holidays she recommended starting new traditions. That is just what I needed to hear since I was the type of person who always went a little over the top at the holidays- decorating, shopping, coooking etc.

A while later Ellen took over as program director at the Wellness Community in Pluckemin. I started to attend the Gynecological Cancer Networking Group as well as some of the other wonderful programs they offer. After returning from the Livestrong Survivors Summit in 2006 I approached Ellen about ideas I had. She guided me on how to approach CINJ to start a support group there and also reigned me in so that I would not head off in too many different directions and loose site of my goal of raising awareness of Ovarian Cancer. After I attended Livestrong day in DC in 2007 , Ellen and TWC willingly hosted a workshop"Advocacy 101" where Betty Gallo and I talked about how cancer survivors can advocate at the state and national level.

Yesterday we spent time just catching up - talking about how we were feeling, how our families were and my new home. I was glad too that Karen a TWC social worker who runs the Gynecologic Cancer Networking Group could join us for our chat since I haven't been to group in many months. I shared with Ellen and Karen how I was feeling about my role as a cancer advocate and where I want to concentrate my efforts as an ovarian cancer advocate. I love sharing ideas and plans with Ellen and Karen . They listen carefully and then provide advice that is right on target for me.

TWC is in an old house so when I was done speaking to Ellen and Karen I went up the center wooden stairs to see Eunice, Executive Director and Patty, Director of Marketing and Community Outreach.

TWC building is a warm comfortable place to visit but the people inside make you feel welcome at any time - making you a cup of tea - just like old friends would. Ellen , Karen , Eunice and Patty have always been there for me.

Dee

Every Day is a Blessing !

A Way of Giving Back to My "Lifesavers"

Yesterday was the High Speed Chase for the Cure, a 5K run and 3K walk, which raises funds for the Cancer Institute of NJ through the CINJ Foundation. I formed the Team High Five a few weeks ago to celebrate my five years as an ovarian cancer survivor and to honor the five gyn-oncs at CINJ , their nurses and their staff . I consider them all my "Lifesavers". I along with the other members of High Five - Nick, my husband , and two long time friends Terry and Joan met at the Rutgers Athletic Center. Theresa, my daughter, was a virtual walker from all the way out in Kansas. It was great seeing so many CINJ folks, Candace, Michele, Dena and of course Dr Gannon- the surgical oncologist who did the surgery for my recurrence.

It started out as a cloudy, cool morning in the 60's. But as fate would have it just as the run/ walk started it became a cool and very wet rainy morning. That did not stop us or the hundreds of other runners and walkers from completing our task. It did though make me go a bit slower- I didn't want to slip on the wet road. We finished our 3K walk in around 30 minutes.

I finished the walk with a wet hat and soaked pants since my Rutgers red poncho couldn't cover everything. But I was thrilled that Team High Five was able to raise over $1000 for CINJ. I love going to my donor page and seeing the little thermometer fill up and listen to the cheers as the the stars shoot out of the top .

It felt great to give back to the people who saved my life.
Dr. Rodriguez, Dr. Gibbon, Dr. Nieves, Dr. Hellmann, Dr. Wagreich yesterday's walk was for you. Thanks!


Dee
Every Day is a Blessing! I am blessed to be treated by the talented doctors and nurses at CINJ.

High Five! A Celebration of Five Years

July 29,2005 was not such a great day for me. I awoke from surgery and learned I had stage IIIB ovarian cancer. My doctor said I shouldn’t read any of the statistics. They are just numbers, she said. Did I listen? No. When I got home from the hospital I went on to the NCI website and I read the stats . Not so good. The overall five-year relative survival rate for ovarian cancer is 46% but for late stage (that was me) it drops to roughly 30%. Not such a great number.

But the stats didn’t know me. The stats didn’t know my doctors. The stats didn't know my family and friends. My doctors, Lorna Rodriguez and Darlene Gibbon and their nurses at the Cancer Institute of NJ are my lifesavers. They discussed my options, suggested a port-a-cath, offered me a clinical trial, started treatment quickly and made sure I stayed on schedule.

My husband was my rock. When I thought it was too tough to continue he would say just take it one day at a time and you’ll be done before you know it. So after nine cycles of carbo/taxol /selenium over a 7 month period, I was done. Life slowly returned to a new normal. Over the next few years I visited my son in Switzerland where he spent a semester abroad, I watched him graduate college and saw my daughter marry a marvelous man.

Then in October 2008 my CT scan showed lesions on my spleen and liver. Darn that was not good. I thought to myself maybe those stats would be right. But once again my CINJ gyn oncs went to work. They referred me to Dr. Chris Gannon , a CINJ surgical oncologist. He removed my spleen and did a liver resection. I followed that up with six cycles of chemo and the cancer was gone. Again. And it still is.

So tomorrow I get to celebrate my fifth "cancerversary". The heck with those statistics.

As a way to celebrate this milestone and to honor my CINJ Doctors and nurses, I am walking in the High Speed Chase for the Cure benefiting CINJ on Sunday September 12, 2010. I’ve formed a team. My daughter suggested the name - High Five. Makes sense – ‘cause I’m celebrating five years as a cancer survivor. Want to join my team? You can walk, be a virtual walker, run or just make a donation for what I think is a very worthy cause- my lifesavers at CINJ.

High Five!

Dee

Every Day is a Blessing !

PS( Thanks to http://www.brightestyoungthings.com/featured/its-national-high-five-day/ for the photo above.)