Thursday, May 26, 2011

Today was All About Cancer Research in NJ

Today was the 2011 Annual Cancer Retreat on Cancer Research in New Jersey. It took place at the UMDNJ- Robert Wood Johnson Medical School in Piscataway. The professional sessions were on Cell death and Survival Signaling , Genomic Instability and Tumor Progression,Cancer Pharmacology and Preclinical Therapeutics and Carcinogenesis and Chemoprevention, Clinical Investigation , Cancer Prevention and Control , Cancer Biology, and Translation Sciences . All the research discussed was performed by NJ researchers. It made me proud to look through the program and see so many researchers in NJ investigating so many different aspects of cancer.

I attended the public forum Opportunities and Challenges :Advancing Cancer Survivorship in NJ and looked at a number of posters. The forum began with a talk by Generosa Grana, MD about the need for survivor care plans and how to coordinate the generation of those plans in various health care settings. Then Tayla Salz, PhD discussed the state of survivor care plans in place at NCI centers for breast and colorectal patients. Shawna Hudson, Phd discussed a study of patient experiences and perspectives of Follow-up care plans. While Ellen Levine spoke about community programs such as Cancer Transitions, and Jennifer Sullivan spoke about public policy advocacy in NJ.

One of the highlights of the day was finding that results of research that I took part in was on display at the poster session and one of the researchers Urmila Chandran was available for questions. So after lunch I found poster # 26 Healthy Eating Index and Ovarian Cancer Risk.For the study I was interviewed and asked to answer questions regarding my eating habits prior to being diagnosed with ovarian cancer. The study investigated the association between the Healthy Eating Index ( adherence to the USDA guidelines) and ovarian cancer risk in a population-based case-control study in NJ. The study concluded that "there was limited evidence for a statistically significant association between any of the 12 individual food components and ovarian cancer risk. Based on the results neither individual food groups nor dietary quality showed potential for preventing ovarian cancer".

As a survivor I often wondered what may have caused my cancer or raised my risk for developing the disease. Back in 2005 I could have said no to answering all those questions but I didn't. Now six years later I can state that my diet did not raise my risk for this disease. Special thanks to the researchers at CINJ, UMDNJ Medical School, the NJ Dept of Health and Senior Services and Memorial Sloan Kettering for finding out the answer to one small piece of the puzzle.

Every Day is a Blessing!

Wednesday, May 25, 2011

The Place to Be on June 18th - One Force to Make a Difference Ovarian Cancer Symposium

Do you live in NJ or the Philly area ?
Are you a nurse, social worker or primary care physician?
Are you an ovarian cancer survivor or have a loved one diagnosed with ovarian cancer?
Do you want to learn more about Ovarian Cancer?
Are you available on Saturday June 18,2011?
Then the 2nd Annual One Force to Make a Difference Ovarian Cancer symposium is for you! The FREE symposium will be held in the Conant Cafeteria at Educational Testing Services , Princeton, NJ . Breakfast and lunch are provided and 5 CME credits will be awarded.
Click here to register.

Presentations topics include: Immunotherapy, Combination of Tumor-targeting chemo and Gene Therapy , Novel techniques for Imaging Ovarian Cancer in Mice, Survivorship and Patient Advocacy, Genetics Counseling and Palliative Care.

Every Day is a Blessing!

Monday, May 23, 2011

Weekend Family Bereavement Camp

For families who have lost loved ones to cancer.
There are still cabins available.

Every Day is a Blessing!

Friday, May 20, 2011

ASCO Preview - Two interesting Studies

The ASCO meeting abstracts are posted online. Here are two studies highlighted on

Long-Term Treatment with Olaparib May Help Treat Recurrent Ovarian Cancer

This PARP inhibitor is effective in extending the progression-free survival of recurrent patients with an inherited version of a DNA deficiency as well as a non-inherited version. Interesting study. I can't wait to hear more about olaparib. Here is a Med-Page link that explains the study further.

Screening Does Not Reduce Deaths from Ovarian Cancer for the General Population

This large ( 80,000 particpant) study highlights the need for further research to find a a screening test for the general public for ovarian cancer. CA-125 and Ultrasound together to screen for the disease did not reduce mortality numbers.

Every Day is a Blessing!

NJ Annual Retreat on Cancer Research: Public Forum " Advancing Cancer Survivorship in NJ"

For my fellow survivors and caregivers in NJ:

Please join us next Thursday, May 26, 2011, from 10:30-12 noon for the NJ Annual Retreat on Cancer Research's Public Forum 2011, "Advancing Cancer Survivorship in New Jersey."

This is an exciting opportunity because it will be a diverse panel of researchers, advocates, and providers talking about key survivorship issues, programming and research that are currently ongoing to address the complex needs of cancer survivors. There is a portion of the program dedicated to dialogue between the panelists and the public and it is essential that we have survivors and caregivers as participants in this dialogue.

Register at

You don't want to miss it!!

Please pass the invitation along to colleagues and patients who may be interested.


Every Day is a Blessing

Tuesday, May 17, 2011

To My Women of Teal

I found this quote and instantly thought of all the Women of Teal in my life who have given me hope with their stories. I posted it on my Facebook page but wanted to share it with those women who read my blog.

"The truth is, in order to heal we need to tell our stories and have them witnessed...The story itself becomes a vessel that holds us up, that sustains, that allows us to order our jumbled experiences into meaning.

As I told my stories of fear, awakening, struggle, and transformation and had them received, heard, and validated by other women, I found healing.

I also needed to hear other women's stories in order to see and embrace my own. Sometimes another woman's story becomes a mirror that shows me a self I haven't seen before. When I listen to her tell it, her experience quickens and clarifies my own. Her questions rouse mine. Her conflicts illumine my conflicts. Her resolutions call forth my hope. Her strengths summon my strengths. All of this can happen even when our stories and our lives are very different."

— Sue Monk Kidd (The Dance of the Dissident Daughter: A Woman's Journey from Christian Tradition to the Sacred Feminine)


Every Day is a Blessing!

Sunday, May 15, 2011

Fun and Informative

Last night Nick and I attended the Kaleidoscope of Hope ( KOH) Foundation's 2011 Spring Gala. It was wonderful getting a chance to see all my KOH friends. The food at the Hamilton Park Hotel was delicious and the service wonderful. We cheered the fact that KOH has awarded over $2 million to research in the past 11 years. We had fun dancing and looking at the silent auction items and celebrating the Founders Award presentation to the Castle Family for their long time support of KOH.

The informative part of the evening was the time I spent talking to this year's research grant awardees Dr. Andrea McCollum and Dr David Hyman.

Dr. McCollum is a post doc fellow at the NCI in Maryland. She works in the lab of Dr Elise Kohn. The research to be supported by KOH is "BAG3 as a predictive marker for sensitivity to chemotherapy and G2/M-targeted agents". Dr. McCollum will be looking at a gene to predict where or not a women's ovarian cancer will be responsive to carboplatin or other targeted agents.

Dr Hyman 's research "Mitigating acquired carboplatin hypersensitivity in ovarian cancer: a randomized trial of 30-minute versus 3-hour carboplatin infusion schedule with assessment of cost effectiveness." was the second young investigator research award presentation. Having experienced a carboplatin allergic reaction I was happy to have the opportunity to discuss the difference between his clinical trial design and the desensitization that other researchers have studied.

It is the support of research by organizations like KOH that will help us answer the many questions we have about why some women's cancer ovarian cancer responds to carboplatin and others don not and how to deliver carboplatin safely to more women. Sometimes we need to think outside the box to find an answer.

Every Day is a Blessing! I am blessed with the opportunity to support KOH.

Wednesday, May 11, 2011

Tips When You Are Receiving Chemotherapy

In my last post I wrote about what I wish I knew before I started chemo. Well once the nervousness of getting through my first chemo treatment disappeared then I started to wonder what will happen next. Here are some things that I learned along the way.

It is all about the Hair!
I knew I would loose my hair. I was told my hair would start to fall out on day 14 after my carboplatin/taxol treatment. Before having chemo both times, I had my hair cut very short. I highly recommend cutting your hair very short or shaving your head. It is hard to see long hairs on your pillow when you wake up in the morning. So I knew my hair would fall out but no one told me that my scalp would hurt when the hair fell out. My scalp felt like it did in high school when I took out the elastic band that held my long hair in a ponytail. My scalp would ache.

Oh that Upset Stomach
The one thing I told my doctor was that I never wanted to be nauseous or vomit. There are many different drugs to combat the nauseousness you might feel. If one doesn't work tell your doctor. There will be another one to try. Be sure to take the drugs on schedule. If you are to take them every two hours - do it.

My Aunt used to tell me that I had to eat to stay strong and fight the cancer. She was right. It really helps to have small frequent meals. I did try to do that but the chemo I took affected my taste buds. Everything tasted the same. Exactly like cardboard with absolutely no flavor. Some people say everything has a metal taste to it . If that is the case with you , try to use plastic spoons and forks. Less metal in your mouth might make the food flavors come through. Personally the one thing that I could taste the flavor of was chocolate malteds. One snowy winter day as I sat in the recliner having my infusion I had a craving for a chocolate malted. Off Nick went to Thomas' Sweet Shop and brought me back one. Delicious!

Why all those Blood Tests?
Many chemotherapy drugs cause your hemoglobin ( helps carry oxygen in the blood) and white blood ( helps fight infection) and platelets( help clot your blood) counts to drop below normal.
So if your hemoglobin is low eat foods high in iron. Low white blood counts be sure to wash your hands, avoid people who have colds/flu symptoms and get the rest you need. So as not to delay your treatments your doctor might prescribe a drug like Neulasta which will prompt your bone marrow to produce more white blood cells.
If your platelets are low be careful to not cut yourself and don't floss your teeth.

I knew that I might feel tired after chemotherapy. Not one person told me I would be so fatigued that I could not lift my arms to hold a book, stand up long enough to take a shower or that I would literally spend 48 hours in bed. Once I knew that is what would happen it became easier to accept the fact that I couldn't do anything on days 3 and 4 after chemo.

When I recurred and started chemo again knowing these what might happen really helped me stay calm.

Every Day is a Blessing

Monday, May 9, 2011

What I Wish I Knew Before My First Chemo

As a volunteer with Cancer Hope Network I have spoken to many women diagnosed with cancer. Many conversations are about their chemotherapy treatments. When a friend called to say she was starting chemo this week I flashed back to how scary it was the night before and day of my very first chemo. It also got me thinking to what I wish I knew before I started chemotherapy.

  • I wish I had a chance to visit the treatment area before that first infusion.( My surgery, port surgery and chemo were all within 10 days.) Ask for a tour. Ask if you will be in a clinic area or in a private room for your first infusion. Where are the nursing stations? How is the temperature in the room?Is lunch provided if you are there at lunch time?Is there wireless internet service?
  • Wear clothing that is comfortable and easily accessible for the treatment. V-Neck shirts if you have a chest port-a-cath. Short sleeve shirts or shirts where the sleeve rolls up easily and won't cut off the circulation in your arm. ( I loved to wear yoga or sweat pants).
  • Ask how long your infusion normally takes. My infusions were very long ( 5+ hours) so I used to pack a tote filled with things to keep me busy. You can only watch so much daytime TV. I found magazines better than books since I had a hard time concentrating. I also brought my I-pod to listen to music ( It also helps drown out the noises and buzzing machines.) Bring a cell phone to stay in touch with family- just remember not to talk too loudly so you don't disturb the other patients. Find out if your center provides DVR's or I-pads or if you can bring your own computer.
  • My center provided pillows and blankets but I had a favorite fleece blanket I brought each time. Just a bit of home to make me feel more comfortable in the recliner.
  • If you are nervous about a particular side-effect such as nausea ask your oncologist to prescribe something to take before you leave for your treatment. If you are really nervous and think you won't sleep the night before ask for a sleep aid or something to calm you down.
  • If you don't have a port be sure to drink plenty of fluids the day before your infusion. Those fluids will help plump those veins and make it easier to find a vein. You'll want to drink plenty of fluids after your chemotherapy infusion too.
  • In my case I received a sheet which listed each IV drug I was given at each appointment but if you are not going to be given this information make note of each drug the nurse gives you at your first treatment. Don't be afraid to ask what is in each of the IV bags and why you are taking it. Write it down. The nurse should ask you to check the name and date of birth on each IV bag to make sure it is for you.
  • You most likely will be given some drugs to take at home after the infusion. Make up a chart with what drugs to take , dosage and when to take. If one is available ask to speak to a pharmacist. Make sure to tell them other drugs - prescription, over-the-counter and vitamins you are taking so that you won't have any drug interactions. Be sure to take the drugs on schedule.
  • When you get home be sure to eat small meals frequently and plenty of fluids. If you are experiencing any side-effects like dizziness , nausea , diarrhea or constipation call you doctor and let them know.
  • Find some comedy shows to watch, humor does make you feel better and less stressed.

Every Day is a Blessing!

Friday, May 6, 2011

An Old Photo and Roses

Many of my friends on Facebook has been using photo's of their mothers as their profile picture. It is their way of honoring their moms this Mother's Day. My mom passed away when I was very young so I don't have many photographs of the two of us together. When I was looking through old photos for the bulletin boards at Aunt Dora's wake I ran across this photo of my mother and I when I was 2.
I don't even recognize where the photo was taken but I love the expression on my face. Not sure what I was eating but I don't think I liked it very much. I might not remember my mother very well but I know that she is very much a part of who I am.

Today, Nick and I went to the store to get some flowers for the patio. As we were walking around I saw this large display of roses. Flashback once again to when I was little. My father loved roses. He had lined the driveway with mostly red ones. I used to love the smell of them. In all the years we have been married I never even attempted to plant roses. But we have this spot at the back of our home that would be the perfect place for this rosebush.
So this year I'll take a stab at planting the rosebush you see above and hope it grows. I just hope some of my father's rose growing talent rubbed off on me.

Happy Mother's Day everyone!
Every Day is a Blessing! I am blessed to have been a mother, had a mother and had an Aunt who was like a mother to me.

Wednesday, May 4, 2011

My Thoughts Exactly

Last night, I learned about the loss of another Woman of Teal, fellow blogger Sarah. She is the author of the blog "The Carcinista". For over a year I have been smiling, laughing and crying as I read Sarah's posts. I literally was speechless. These past few months have been brutal. I know there is probably a better word to use to describe what has happened but I can't think of one right now. Every few days there has been another death.

This morning I began to think about what and how to write this blog entry. I went online and read some posts on facebook and saw my friend and fellow Ovarian Cancer survivor, Maggie's blog entry "The Rhythm of Life" . She said it all. I can't add anything to it.

Thank you Maggie.

Every Day is a Blessing!

Monday, May 2, 2011

Hope and a Teal Tea

Yesterday was the Teal Tea foundation's 5th annual Teal Tea and the third year I attended. The funds raised will support ovarian cancer research at CINJ and Fox Chase Cancer Center.

This year I agreed to be a Table Captain. What did that involve? It meant that I had to decorate the table according to the theme of the year. This year it was Teal Cities of the World. I wasn't sure which city to pick- Rome ? London? . In addition to the city theme the decorations were to include the color TEAL.

I decided to pick London. I wanted to honor the British women who are my friends through this blog and through a group I belong to on Facebook. The feelings, hopes, treatments and concerns you have as an ovarian cancer survivor are the same no matter where in the world you live.

I spent the past month or so collecting different items to represent London. Then I decided to build a model of Westminster Abbey ( scene of the wedding of William and Kate). I finally found a balsam wood kit of the Abbey and aa telephone booth at Michael's Craft store. It took me a while to put the models together but a few days before the Tea they were done. And the finished product is what you see above.

The event yesterday was wonderful. Ann Gutos , survivor and Jenny Allen survivor and actress shared their stories of survivorship with courage and humor. During the invocation my doctor shared the definition of hope. I don't remember the exact words she used but one definition is "the feeling that what is wanted can be had." Yesterday was a day of Hope . My hope is that this tea will help find a cure.

Every Day is a Blessing. I was blessed to share the day with so many survivors including my friends Pam, Lynn.Lynn,Deirdre and my cousins Marion,Ali and Erica