Thursday, December 29, 2011

4 Years of Blogging -

Four years ago today I started this blog. I had no idea when I started this blog that it would reach more people than my family and friends and some fellow ovarian cancer survivors in New Jersey.

Thanks to the statistics the Blogger software started keeping in May 2009, I know that my blog has reached far from the Garden State. I have also been read in Germany, Great Britain, Russia, Canada, South Korea, France , the Netherlands, Iran and Australia and I have between 1,500 and 2,200 page views a month. My most popular posts have been about the HE4 blood test, weather and test anxiety and chemotherapy drug shortages. It appears that my page view numbers have increased since I began writing more consistently about Ovarian cancer research news. Or maybe the recent jump in readership may be to my new @womenofteal twitter account. With every new post I write I supply a link to the blog. My plan in the year ahead is to keep writing about research news and to provide links to abstracts and journal articles.I guess four years later I can officially call myself a blog writer.

I thank all you for being here the past year as I have shared my personal ups and downs. Writing about the passing of my dear Aunt Dora and Uncle Bruno helped to ease the pain and heartache I felt. I also appreciate the opportunity to write about and honor women I knew (Monica, Jeanne, Jo, Gaynor, Sarah, Patty, Janet, Jayne, Ellen, Courtney) who lost their lives to ovarian cancer.

I also appreciate the opportunity to share the good news- attending ASCO, travels around the country and especially the birth of my grandson ,John, in September. What a blessing he is in my life.

I hope you have enjoyed reading my blog as much as I enjoyed writing it. I look forward to writing for you in 2012.

I wish you all a Happy and Healthy New Year!

Dee
Every Day is a Blessing!

A Memorable Christmas time

My grandson's first Christmas.
Spending the holiday weekend with my son, daughter, son-in-law, grandson and husband in a place that actually had snow on the ground.( I love snow!)
Getting the chance to see my niece, her husband and watching my great nephew D open his gift.
Well LIFE doesn't get much better than that.


So there is the explanation for my absence. We were too busy cooking , watching "White Christmas" and "It's a Wonderful Life" , playing Rummicube, and just spending time with each other. Actually, I didn't think much about cancer. Except on Christmas Eve. We had just come home from Christmas vigil mass. I sat and watched as Matt and Terry worked in the kitchen putting together the traditional 7 fish Italian Christmas Eve meal. Andy and Nick were chatting about which wine to serve with dinner and JT was asleep. I suddenly had the urge to cry, not from sadness but from gratitude to have the opportunity to spend another Christmas with my family.

I am truly blessed.

Dee
Every Day is a Blessing!

Friday, December 23, 2011

A Christmas Gift to my Readers

A gift to my readers .


IMG_1676 Sandy Mezinis 2011 (c) ANGEL IN THE KEYS

This painting was created by fellow ovarian cancer survivor, award winning watercolorist and my friend , Sandy Mezinis. You may see cards made from her paintings at Sagesse Design . They are beautiful.

Merry Christmas !

Dee
Every Day is a Blessing!

Kathy La Tour's Cancer and Christmas Blog

I love reading CureToday magazine especially their blogs. When the e-mail announcing links to the online magazine arrived in my mailbox today I headed right over to Kathy La Tour's Cancer and Christmas blog.

" The next Christmas was better and worse because it was the birth of the woman I dubbed the Crazy Christmas Mother. " I laughed to myself because Kathy was describing me during Christmas 2006. I had to go back to doing everything - outside lights, inside garland, trees , nativity, etc.

You have to read this blog if you are in treatment for cancer now or you are a few years out but especially if you are the caregiver and wonder what happened to your spouse /friend/loved one.

Heed Kathy's advice " to be easy on yourself. " because you know it is being with those you love that is what is important this Christmas not how many cookies you baked or ornaments you put on the tree.

Dee
Every Day is a Blessing!


Tuesday, December 20, 2011

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"
video

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!

Sunday, December 18, 2011

Ixabepilone and Sunitinib - Pre-Clinical trial results

After producing a new cell line of chemotherapy-resistant ovarian cancer cells, researchers at the Mayo Clinic used the combination of Ixabepilone and Sunitinib to treat the cells. The Ovarian Cancer cells exhibited a 70% cell death when the combination was used. Researchers believe that the drugs activate the molecule RhoB which leads to cell death.

Drug info:
Ixabepilone - IXEMPRA is produced by Bristol Myers Squibb and is FDA approved for metastatic breast cancer. Ixempra attaches itself to the tubes inside cancer cells that are used during the replication and division of the cells.

Sunitinib - Sutent is produced by Pfizer and is approved for Kidney Cancer, GIST and some forms of pancreatic cancer. Sutent is a kinase inhibitor that interfers with cancer cell reproduction and the formation of blood vessels by the cancer cells.

Abstract of the article may be found here.

This is an interesting line of research on serous ovarian cancer . I look forward to hearing about the first human studies.

Dee
Every Day is a Blessing!

Friday, December 16, 2011

Meetings Make for a Busy Week

Have you been missing my posts? Well, it sure has been a busy advocacy week for me.

Meeting 1 - One Force to Make a Difference

One Force is a collaborative of ovarian cancer organizations in NJ whose mission is to develop synergies that will effect increased education and awareness about ovarian cancer; improved support for survivors; and better resources for survivors and caretakers. One Force to Make A Difference supports and participates in fund raising and other events that contribute to innovative, cutting- edge ovarian cancer research. We have offered symposiums in the past and during this call-in meeting we began the initial planning for the 3rd Annual One Force To Make a Difference Symposium. Yours truely will be one of the co-chairs. Lots of work ahead but all in support of women with ovarian cancer and their caregivers.


Meeting 2- Mercer County Cancer Coalition

This was the second quarterly meeting I have attended since moving to Mercer County and joining this Coalition. I wore three hats for this meeting - one as a Teal Tea Representative, one as a One Force representative and one as Me- Women of Teal blogger. I have posted on this blog about events run by Coalition There are many excellent opportunities in the county to raise awareness cancer and healthy lifestyle choices that help prevent the disease. Coalition members run cancer awareness and fundraising events and health / wellness events such as the Run for Dads which takes place each year on Father's Day to raise awareness of prostate cancer. If you live in NJ and are interested in attending your Cancer Coalition meetings check this page for more information.

The meeting was held at the new Capital Health Center in Hopewell NJ. It recently opened and the facility is bright , the people are friendly and helpful and the shops - on general and one for mothers and newborns were chock full of nice and unique gifts. Parking is free and there is even free valet parking.


Meeting 3 - CINJ Survivors Day

Well, I can't write too much about this event since we are firming up the keynote speaker and the format but this will be one CINJ Survivor's Day you do not want to miss.


I know I need to limit what I am involved in but it is hard for me to say "no " to any request that means helping others with cancer. So as exciting as it was to be asked , I decided recently to not apply to be an LAF leader from NJ and to not apply to be an advocate at the 2012 Survivorship Research Conference.


In 2012, I will concentrate on fundraising for CINJ ( more to come about this in February) , co-chairing the One Force to Make a Difference symposium in May, speaking to other ovarian cancer survivors as volunteer with Cancer Hope Network, serving as a Teal Tea Table Captain and my research advocacy work.


After all, I need time to write this blog , create a few more Quilt paintings and have fun with my family.


Dee

Every Day is a Blessing!


Tuesday, December 13, 2011

Cancer Survivorship Studies Are Not Created Equal

When I was at the ASCO meeting in June I attended a few survivorship presentations. I was happy to see these studies were being done especially in the area of side-effects and survivorship plans. I did wonder though why it seemed the few that I attended all talked about survivorship studies for breast cancer survivors. Cancer survivorship research is a relatively new research area and there are a large number of breast cancer survivors, so it did make sense to me that breast cancer was the first to be studied.

In 2008 there were only 177,578 women alive with a history of ovarian cancer ( diagnosed, in active treatment or cured(?) of the disease. While there were 2,632,005 breast cancer survivors. (Data is from the NCI SEER website. )

Just the other day I ran across a news article on the National Coalition for Cancer Survivorship (NCCS) website titled "Some cancers under-represented in survivorship research, study finds ". Guess what The Ohio State University study found ? Forty percent of the survivorship studies are with breast cancer survivors who make up 22 percent of all survivors. On the other hand, only 5 % of the studies are with prostate survivors who make up 20 percent of the survivor population. My initial observation in June seems to have been proven by this study.

The report printed in the Cancer Epidemiology, Biomarkers and Prevention journal also mentioned that gynecologic cancers are also in the under-represented group. I don't have access to the entire article so I can't give you the exact numbers.

So not only do ovarian cancer survivors need to advocate for more research dollars to find a screening test and better treatments but we also need to advocate for more money to study our survivorship issues. We have our work cut out for us!

Dee
Every Day is a Blessing

Friday, December 9, 2011

ASCO Blueprint for Research

"We can no longer think of cancer as one disease"
Michael P Link, President of ASCO

That is the reason why ASCO ( American Society of Clinical Oncologists) has published a blueprint to transform clinical and translational cancer research.

The ASCO Vision includes :

"Defining Cancer Based on Characteristics, Not Solely by Location in the Body, Molecularly-Driven Diagnostic and Therapeutic Development, More Robust Biomarkers, New methods of Cancer Prevention, Diagnosis and Treatment"


I also agree with the recommendation that there be more collaboration on the development of therapeutic agents, a focus on smarter, smaller more focused ( molecularly) clinical trials and the use of electronic medical records.

It is an interesting read and I highly recommend it.

Don't take my word for it, download Accelerating Progress Against Cancer at

I'm curious to see what you think.

Dee
Every Day is a Blessing.

Wednesday, December 7, 2011

Fertility Issues Impact Our Lives

The other day I ran across the post Sometimes you can't "save the ta-tas" on Salon.com. The subject was the decision by reality star Guiliana Rancic's to treat her breast cancer and preserve her fertility by having a double mastectomy instead of further lumpectomies, radiation and anti-estrogen therapy . Mary Elizabeth Williams, author and cancer survivor, states " And regardless of our relationship statuses or the size of your family, there’s a whole different set of unexpected feelings to deal with when you’re facing cancer, a profound change in your body and a possible screeching halt to your fertile years." .

How true. It is difficult to visibly see your body change. Learning that preserving fertility might not be possible is heartbreaking.

Women diagnosed with ovarian cancer do not deal with loosing a visible body part. Instead, we loose multiple internal organs - our uterus, fallopian tubes, ovaries, and many times our cervix. And let's not forget the removal of our omentum ( the fatty layer that covers the organs of the abdomen) during the debulking part of our surgery .

We are not all women in our 60's and 70's when we are diagnosed. Many of us are women who are diagnosed well in advance of menopause. Many of us are diagnosed at later stages which makes it almost impossible to preserve our fertility. We have surgery and are thrown into instant menopause. The joy of hot flashes with the drop in estrogen while facing the loss of our hair from chemotherapy. Even though I had two children, I mourned the loss of my fertility. I am saddened by the loss of fertility for young ovarian cancer survivors like my friend's niece , Nicole. So we are dealing with the physical effects of menopause while dealing with the emotional side of being unable to have children.

Here are a few resources that provide cancer patients with information about fertility:

Dee
Every Day is a Blessing!

Friday, December 2, 2011

RWJF Health Care Disparities Report -

Robert Wood Johnson Foundation has recently issued a Health Policy Brief appearing in HealthAffairs.org. Achieving Equity in Health discusses the health care disparities experienced by ethnic and racial minorities in the United States. Some improvements in the area of quality of health care for minorities compared to whites have been made but much work on this complex issue still needs to be done. There are still disparities in minority mortality rates as well as a higher prevalence of diabetes, stroke and preventable diseases. The report describes the causes of the disparities to be education, geography and neighborhood, environment, stress, inadequate access to health care, inability to navigate the system and provider ignorance or bias. One portion of the report noted that in 2000-2004 black women experienced 8.8 more deaths per 100,000 people than white women. Please read the report for more details.

All women are at risk for ovarian cancer and other gynecologic cancers. Many organizations are reaching out to minority women to educate them about ovarian cancer.
Here is a link to a spanish Ovarian Cancer Tutorial on Medlineplus :
Also the American Cancer Society has a booklet What is Ovarian Cancer? in Spanish



Thursday, December 1, 2011

Heart to Hearts - Educating Women in NJ

Recently I learned about a New Jersey non-profit organization called Heart to Hearts.
Its mission is to "educate women and their families about important issues that affect their health and well-being .We believe that education is the key to empowering women to make positive changes in their lives that will result in healthy lifestyles for them and their families. "

They offer programs, classes and seminars to support their mission. One program offers a comprehensive wellness evaluation from personal history , to eating types, metabolism and nutrition. They also offer classes in fitness, stress management and laughter.

Please visit their webpage ( http://www.hearttohearts.org/ ) for more information or to volunteer.


Dee
Every Day is a blessing!


Wednesday, November 30, 2011

Gifts for Survivors

Seems like my mind is still on the Holidays so I'm going to continue on the topic.

First- hop on over to the HuffPost Healthy Living post titled Lori Hope: The Best and Worst Holiday Gifts for People with Cancer. Lori is a cancer survivor, and author of Help Me Live: 20 Things People with Cancer Want You To Know. She has put together two good lists. Personally, I wouldn't be adverse to a subscription to a current events magazine. When I was in treatment I had a hard time concentrating on an entire book. I ended up rereading too many pages in the infusion room, so instead I brought magazines and then shared them with other patients. Plus, getting a full year subscription would make me feel good that you thought I would last the year. Of course something like People Magazine might also make me laugh a bit.

Dee's Worst Gift List ( in addition to Lori's)
1. Fragrant candles or reed diffusers- check with the survivor's caregiver before purchasing. When I was in treatment some fragrances would make me nauseous. Really not the effect you want your gift to have.


Dee's Best Gift List ( in addition to Lori's)
1. I-Pod or I-Tunes gift card ~ I loved listening to my I-Pod shuffle while in treatment. It helped to drown out all those beeps and bells from the instruments. The I-Pod Shuffles are relatively inexpensive.

2. Warm V-necked shirts ~ I have a port-a-cath so v-neck shirts help the nurses easily gain access to my port.

3. Pretty Shawl ~ I was always chilly in the treatment room and if you have an IV in your arm, wearing a sweater is difficult. My church offers Prayer Shawls to patients. I received one when I was in treatment and still use it.

4. An Experience Gift Card- I would rather experience something than have another gift under the tree. Experiences could range from dinner out with friends, a trip to a museum, a day at the spa, a day at the outlet mall ( who doesn't like shopping) , a day at the beach/lake ( I know winter is on its way but just sitting in the sun and watching the ocean is very calming to me.)

If you have any additional suggestions leave me a comment.

Happy Gift Giving!

Dee
Every Day is a Blessing!



Tuesday, November 29, 2011

Advice from my Christmas Past

Over the past few days we have been slowly decorating for Christmas. It is one of my favorite times of the year.

With the weather here in the northeast in the mid-high 60's, and with the help of my husband and son , we decorated the outside of our home. Then we moved inside. Day 2 , decorate the mantle and place the Advent Wreath on the dining room table with its pink and purple candles; Day 3, set up the tree; Day 4, decorate the tree; Day 5, put up the Nativity and add a touch of Christmas to the kitchen.

Before my cancer diagnosis with the help of my entire family I would begin decorating the morning of Black Friday and by dinner with Christmas Carols playing the entire house inside and out was decked out for the holidays.

It doesn't work that way any more. And it most certainly didn't work that way in December 2005 while in chemotherapy and five months after I was first diagnosed, or in December of 2008, one month after my recurrence and surgery on my spleen and liver.

Having experienced two Christmases in treatment I offer this advice:
1. Look at everything you have to do, prioritize and cut back. Instead of baking 5 different cookies, just bake two. Instead of midnight Mass/ Service maybe attend the earlier evening service. Can't make it to church ? Contact your pastor /minister/ deacon and ask them to visit you. Can't imagine lugging the Christmas tree and decorations from the attic? A simple dwarf spruce tree from a local store might be just the thing to bring the Christmas spirit into your home. And in the spring time you can always plant it outside. To tired to shop? Buy online. Don't have a computer? Check those Sunday newspaper adds and call the stores to order your presents. (I know you are reading this and saying I need to do everything. I have said the same thing. I know how you feel. I've cried a few times over not being able to physically do things.)

2. Ask for help. I never wanted to ask for help. I'm stubborn like that. I thought , I was the mom I was suppose to make the cookies, buy the gifts, plan the dinner. But I came to realize that family and friends really want to help out. So I learned to let them. It was ok to let Theresa and Matt make the cookies and for Nick to buy the presents. And it was ok to go to a friend's house for Christmas Eve and just enjoy the night. And it was ok that every decoration was not on display. Ask for help to wrap presents and make out Christmas cards.

3. Get your rest! I learned to nap - at other people's houses. I would just ask the hostess if it was ok if I went in to another room to rest. A half-hour later I was good to go for a few more hours.

4. Eat right! Be sure that you eat those 3 meals a day or more if you need to. Sometimes when you are visiting others the meal might be scheduled later than you are used to. Be sure to eat some crackers, fruit, a handful of nuts or have a glass of juice. Those things should tide you over until the meal begins. Remember if your white count is low to follow the guidance the doctor has given you about what to avoid.

You can be in treatment and have a very Merry Christmas too. This advice works for those celebrating Hanukkah and Kwanzaa too. Enjoy!

Dee
Every Day is a Blessing!Blessed to be here for another Christmas season.

Monday, November 28, 2011

Immunization Presentation - Nov 30th

Capital Health presents


IMMUNIZATION UPDATE


Wednesday, November 30, 2011

6:30 – 8:00 p.m.

Capital Health in Hamilton

1445 Whitehorse-Mercerville Rd., Hamilton


Join Doug St. John, Pharm.D. and learn more about current vaccine information. The program will discuss the role vaccines play in healthcare and also explore the controversies surrounding them.


Preregistration Required.


For more information and/or to register for this program, call 609-394-4153. You may also register online at www.events.capitalhealth.org.




Nursing contact hours will be given at this program.

Capital Health is an approved provider of continuing nursing education by NJSNA, an accredited approver by the American Nurses Credentialing Center’s Commission on Accreditation. PI22-3/10-13.


I thought some of my readers might find this interesting. There are clinical trials for a vaccine for ovarian cancer currently going on at U Penn, The Cancer Treatment Centers of America, NCI and the May Clinic. I hope one day they will be talking about a vaccine every woman can take for Ovarian cancer.


Dee

Every Day is a Blessing!

Wednesday, November 23, 2011

I am thankful for...

L oved ones
I nteractions with my dogs
F riends
E xtraordinary doctors

Dee
Every Day is a Blessing!

Tuesday, November 22, 2011

Doxil Shortage Development

On the Doxil web page Rob Bazemore , the president of Janssen Products ( J&J is the parent company) , states;
"I am saddened to share news today that Ben Venue Laboratories, Inc. (BVL), our third-party supplier who manufactures DOXIL®, announced its temporary suspension of manufacturing and distribution of drug products. Click here to read a posting on the BVL website announcing this news and here to read our related official communication to healthcare providers.

This voluntary decision is a result of an internal BVL review, which indicated that routine preventive maintenance did not happen at a specified time for some manufacturing equipment. This required maintenance included steps to ensure that machinery meet all qualifications before being used again. BVL is halting production to conduct a site-wide assessment to determine the potential impact, if any, and will implement any corrective actions if needed.

This temporary suspension of manufacturing by BVL impacts the production and release of DOXIL®, which is currently in short supply and not available beyond product already allocated to patients in the DOXIL® C.A.R.E.S. Physician Access Program. We are not able to estimate timing when DOXIL® may return to the market as BVL has not provided a commitment on when its manufacturing operations will resume. In light of this situation, patients should speak with their physicians about alternate treatment options.

"
For the complete statement please see http://www.doxil.com/doxil-supply-shortage.
Doxil is a doxorubicin Hydrochloride encapsulated in liposomes for intravenous use. The manufacture of Doxil includes a fermentation process ( a streptomyces bacterium is used) and subsequent chemical conversion processes to reach the final drug stage. In Europe, Doxil is know as Caelyx. The patent on Doxil expired in 2009 but it has orphan drug exclusivity until May 2014 . Orphan Drug status is given to those drugs that are used to treat rare conditions with less than 200,000 patients using it per year. Yes, ovarian cancer is considered a rare condition with ~25,000 women diagnosed a year. That status protects J&J from generic drug competition and allows the company to recoup its development and marketing costs.

Prior to teaching I was a process chemical engineer for an over -the-counter product manufacturer. I understand the need for maintenance. I remember how long it took for the manufacturing plant to break apart the pipes , clean & sterilize them and restart. It is not an overnight procedure. It may take upwards of two weeks. Then the fermentation must begin again so that also adds time to the process. My hope is that J&J does not wait to find a new back-up contract manufacturer. In this economy there may be other manufacturers just waiting to fill the void. It will take them the same time to startup the process but then all the women who need it will have access to the drug. Or J&J can give up it's drug exclusivity and allow other manufacturers to produce the drug.

Please don't wait J&J, women's lives are at stake.

Dee
Every Day is a Blessing!

Sunday, November 20, 2011

Cancer Caregivers

On Friday, I received a reminder from the The Cancer Support Community that today, November 21, 2011 is National Cancer Caregiver Awareness Day. I thought how nice that there was a day to recognize all those caregivers who give so much of themselves to help their family and friends diagnosed with cancer.

Then a short time later, I read an entry on my niece Chloe's blog, Chloe Yelena Miller entitled "Writing Prompt: Parent / Caregiver Memory". I decided to use that prompt to write about my special caregiver in honor of Caregiver Awareness Day.

Continuing
We were sitting in the warm examination room on the first floor of CINJ. Nick in the arm chair by the wall and me perched high up on the special chair/examination table. My legs were dangling far off the floor.

My gynecologic oncologist had just left the room. It was 3 weeks after my 6th carbo/taxol/selenium treatment. Minutes before she had come in and explained to me how she was recommending I do 3 more treatments. All the spots of cancer that remained after my surgery were gone except for one on the top of my liver by my diaphragm. I quietly told her "OK" . She told me that she was going to write the orders for today's treatment and would be back.

I turned to Nick and said " I don't think I can do this anymore." Tears were brimming up in my eyes. The eyes that had no eyelashes. And I lowered my chin to my chest.

Nick came up to me placed his hands on either side of my face and gently raised my face toward his. He looked me in the eyes and said " You can do this. Lorna thinks you should and I know you can. We will take this one treatment at a time. Do this for me and Terry and Matt."

And I did. I finished all three treatments. And when my cancer returned in 2008, I had surgery and 6 more treatments - all with my caregiver, my husband, my friend by my side. He was with me for chemo treatments, scans, port flushes, and doctor's appointments, putting off things that he could have been doing. He spent many sleepless nights with me, created schedules in Excel to make sure I didn't miss taking any pills, handled health insurance calls and held me tight when the pain was overwhelming me. And he made me laugh.

His care has been a crucial part of my recovery.

Thank you Nick!

Dee
Every Day is a Blessing!

Friday, November 18, 2011

Thursday, November 17, 2011

Sandy Rollman Ovarian Cancer Foundation Shopping Benefit at Saks

Attention all my readers from Pennsylvania . Here is a great opportunity to shop and support a good cause.
From a Sandy Rollman Ovarian Cancer Foundation e-mail:

Please join the Sandy Rollman Ovarian Cancer Foundation for a Fashion Show, Shopping, Makeovers, Food, Cocktails & Charity at Saks Fifth Avenue. There's no better combination! A Makeover Party for 12 at Saks will be raffled off. A portion of the proceeds will benefit the Sandy Rollman Foundation. Don't forget to invite your friends!

Date: Wednesday, November 30, 2011

Time: 6 PM to 8 PM

Location: Saks Fifth Avenue; 2 Bala Plaza; Bala Cynwyd, PA

Please RSVP to Robin at robin@sandyovarian.org


Sandy Rollman Ovarian Cancer Foundation, Inc.

2010 West Chester Pike, Suite 300
Havertown, PA. 19083
Toll Free: 1(877)730-1100
Phone: 1(610)446-2272
Fax: 1(610)446-2281
Send Us an Email At:
info@sandyovarian.org

Dee

Every Day is a Blessing!

Wednesday, November 16, 2011

A Day of Pampering for Cancer Patients and Caregivers in New Jersey


Once again the Elixir Fund is providing special services for cancer survivors and their caregivers in NJ. On December 4th, at the Radiant Spa and Salon in Hamilton, the Fund is offering a mini-makeover from noon to 3 pm. Survivors or caregivers can have their choice of two services a mini-facial, manicure/pedicure or chair massage. Click on the image above for more details.

Services are free but appointments are required.Call 800-494-9228 or e-mail contact.elixirfund.org. Please share this information with any survivors in NJ that you think might love some extra pampering!

Dee
Every Day is a Blessing!

Monday, November 14, 2011

Helping Others on the Journey- Cancer Hope Network

When I first learned I had ovarian cancer I did not know another woman with the disease. At my cancer center, I picked up a brochure for the Cancer Hope Network. I gave them a call and they matched me with a woman from NJ who was a survivor for over 5 years. I was thrilled to talk to her and saw her journey as one I could be on too.

In 2008, I decided that I wanted to be the person on the other end of the phone line giving another woman hope. So I took the training and became a patient support volunteer. I have spoken to women throughout the US . I've even made a call at 9pm to be able to chat with a survivor in California when they got home from work. I took a short leave of absence from my calls when I recurred but then started back up again when I finished treatment.

On Saturday, I was pleasantly surprised to receive a card in the mail from Cancer Hope Network. It said
Cancer Hope Network's
Garden of Hope Award
---------
In recognition and with deep gratitude
for three years of helping people
diagnosed with cancer .

Had it really been that long? It seemed like just yesterday when I started making those calls.

Along with the card were packets of flower seeds with the words "Volunteers plant the seeds of kindness". I can't wait to plant those seeds in my garden next year and watch the daisy's grow.

Dee
Every Day is a Blessing! I am blessed to be a Cancer Hope Network Support Volunteer.





Sunday, November 13, 2011

Understanding How Ovarian Cancer Spreads

Research has shown that ovarian cancer cells rarely spread through the body via the lymph system but rather that the cells slough off the surface of the ovaries or the fallopian tubes. Then the cells float in the fluid of the abdomen know as ascites which provides nutrients to the cells until they settle and attach themselves on another organ in the abdomen. Understanding how this happens has been the focus of recent studies by the researchers at the Harper Cancer Research Institute ( a partnership between the University of Notre Dame and Indiana University School of Medicine- South Bend).

They found that a"Wnt signaling" pathway is improperly turned on in ovarian cancer cells. The proteins allow the ovarian cancer cells to make the changes to survive in the abdomen. "Wnt signaling" has been shown to play a role in the spread of colon cancer.

The article "Researchers Exploring Important New Insight Into Ovarian Cancer contains additional information. Original research article can be found in the Journal of Biological Chemistry.

Dee
Every Day is a Blessing!

Thursday, November 10, 2011

Jeanne - Woman of Teal

I first met Jeanne Moran when I joined the Northern NJ National Ovarian Cancer Coalition chapter. She was just a few years older than me, was teacher ( like I was) and was in remission. She and her family were active members of the group who raised awareness for ovarian cancer and raised funds for NOCC.

If I recall correctly ( and that is difficult for me lately) we both recurred around the same time. The difference was she has been in treatment since then. For the past few days I have been wondering how our ovarian cancers are different. Why has her disease metastasized further where mine has not. Oh how I wish we could get answers to those types of questions.

On Tuesday I was saddened to learn that Jeanne, with her family by her side, passed away.
She will be missed by her loving family, her students and her NOCC friends.

A friend wrote , "Jeanne was very valiant". Yes, she was a very valiant Woman of Teal.

Dee
Every Day is a Blessing!

Wednesday, November 9, 2011

Cancer Research for the Layperson

As you may know I have been preparing information for my "Reading Between the Lines: What Cancer Research Means for You" talk for the past few weeks. My goal was to make cancer research results more understandable to the lay person.

I was thrilled when I entered the comfy, living room like setting of the CSC-CNJ to see seven women ready to hear me speak. Because of the informal setting it was easy to have a real conversation with these women. I shared information I had learned about clinical trials and they asked questions about protocols. I relayed questions that medical journalists should ask when writing articles and we turned it in to questions survivors should ask themselves when they hear cancer research news in the media. We talked about the words used in articles about cancer and they added to my list. We discussed experimental versus observational studies. I spoke about the format of peer-reviewed journals. I happened to pick a 2008 phase III study for small cell lung cancer as the example and it included a drug one of the women had been on, so that lead to an interesting one-on-one discussion with her at the end of my talk. I was happy to spend the hour with these survivors.

Thank you to The Cancer Support Community Central NJ (CSC-CNJ) for giving me the opportunity to share what I learned about cancer research as a Research Advocacy Network Focus on Research Scholar.

Dee
Every Day is a Blessing!

Monday, November 7, 2011

Clinical Trial in NJ to Screen for Ovarian Cancer


There is no screening test for ovarian cancer. A Pap test does not screen for ovarian cancer. But you can help change that.

Brian Slomovitz, MD works at The Women's Cancer Center at the Carol G Simon Cancer center. I've met and spoken to Dr Slomovitz about his research, most recently at the ASCO meeting in Chicago in June. Currently, he is running a clinical trial evaluating blood and urine for the screening of ovarian cancer. Post-menopausal women between 50 and 74 with at least one ovary , a health care provider and who has not been under cancer treatment for the past 12 months may participate.

If you fit those criteria will you participate and help find a screening test? Call 973-971-6491 or e-mail Ovarian.Screening@atlantichealth.org

Click on the photo above for more information.

Dee
Every Day is a Blessing! Thank you Dr Slomovitz for your research into finding a screening test for ovarian cancer.

Thursday, November 3, 2011

Susan, Women of Teal, Working for All of Us

In June at the ASCO conference I met Susan who was also a Research Advocacy Network © Focus on Research Scholar ©. She is an ovarian cancer survivor who has become an active ovarian cancer advocate.

I thought other survivors would like to read her profile ,Susan Leighton: 14-year Survivor of Stage IIIC Ovarian Cancer in the Department of Defense Ovarian Cancer on the consumer involvement page. Susan serves as a consumer reviewer for the Department of Defense Ovarian Cancer Research Program (OCRP) . My readers in Huntsville Alabama area might want to join her awareness activities and become active in Lilies of the Valley.

Wednesday, November 2, 2011

TEAL Helicopters !

Those of you who live in NJ may have noticed TEAL helicopters flying through the sky. Those were Atlantic Air, medevac helicopters, which are part of Atlantic Air Corporation and Atlantic Health.

Have you ever wondered what happens when the team of paramedics and nurses are transporting cardiac or trauma patients? Then you should go to this abc.com website and read When a Helicopter is Your Lifeline by Dr Macgovern . Be sure to watch the video and be on the lookout for Kevin, my niece's husband, a paramedic with Atlantic Health and my friend Jay, a nurse with Atlantic Health.

Dee
Every Day is a Blessing!We are blessed to have these air transport services available to us in NJ.

Tuesday, November 1, 2011

A Protein and the Pill

These reports are too interesting to just post on my Latest OC Research Page.

All About a Protein:
This News Medical article titled " Fat Cells Play a Major Role in Mediating Ovarian Cancer Metastisis" explains in layman's terms how FABP4, a fatty acid binding protein, may promote the spread of ovarian cancer cells to the oomentum.

Here is a link to the original research in Nature Medicine "Adipocytes Promote Ovarian Cancer metastasis and Provide Energy for Rapid Tumor Growth"

The Pill and Risk:

An article "Oral Contraceptive Use and Reproductive factors and Risk of Ovarian Cacner in the European Prospective Investigation into Cancer and Nutrition" in the British Journal of Cancer showed that taking oral contraceptives for 10 years reduced a women's risk of getting Ovarian Cancer.

Here is a link to the News Medical article on the study.

Dee
Every Day is a Blessing!

Monday, October 31, 2011

Complimentary Therapies for Cancer Patients and Caregivers



The Elixir Fund is supporting a Bridges to Wellness program on December 10,2011. Spend a day learning how to reduce stress , relieve pain and improve sleep through the use of yoga, laughter and Jyutsu. Click on the photo above to enlarge and for more information or visit http://www.elixirfund.org/.


Dee
Every Day is a Blessing

Thursday, October 27, 2011

Reading Between the Lines- My Upcoming Presentation

Survivors and Caregivers are cordially invited to:

"Reading Between the Lines: What Does Cancer Research Mean for You?"
Cure For Cancer Found - News at 11!
What do the cancer research soundbites that you hear on the evening news mean for you? Learn how to read and interpret cancer research results from posters to journal articles . Find out which Websites are reputable sources of cancer research information.

November 8, 2011
1:15pm-2:15pm
Cancer Support Community Central New Jersey (Formerly the Wellness Community)
3 Crossroads Drive, Bedminster NJ, 07921
Call 908-658-5400 to register.


I am so happy to be having the opportunity to share with other survivors and caregivers what I learned about cancer research as a Research Advocacy Network Focus on Research Scholar. Using examples from the media I will discuss what every survivor and caregiver should ask themselves when they hear the latest cancer research news on TV or read about it online. I will also talk about clinical trials and the differences between experimental and observational studies. Attendees will be able to take home a list of sites on the internet that offer reliable information about cancer research.

I hope to see some of my followers on that Tuesday.

Dee
Every Day is a Blessing

Wednesday, October 26, 2011

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.

Comfort Registry Survey for Patients and Caregivers

"The Elixir Fund is a nonprofit organization dedicated to improving the comfort and care of cancer patients and their caregivers."

The Fund is in the process of developing a "Comfort Registry " for cancer survivors and caregivers. The registry would provide survivors and caregivers a place to create a wish list of amenities or services that would make their cancer journey easier. Suggested items include - spa treatment, massages, yoga classes, complimentary therapies etc.

The Elixir fund would like to hear your feedback about these ideas. Any cancer survivor ( you do not have to be ovarian cancer survivors) or caregiver, in treatment or finished with treatment can fill out the survey. Click here to go to the survey webpage.

If you are a business / organization that may be able to provide services or amenities for the program please see the Elixir Fund's website for contact information.

By the way, I've already filled out the survey.

Dee
Every Day is a Blessing ! Organizations like the Elixir Fund are blessings in the lives of cancer survivors.

Monday, October 24, 2011

For Jo - Not Just Ovaries

Yesterday, Jo, passed away from cervical cancer. Jo was one of my long distance British friends.

I started reading Jo's blog , Life in Windermere ( http://lifeinwindermere.blogspot.com/) a few years ago. I was lucky to get to know Jo, her husband, son, soccer and The Royal Marsden Cancer Center even better through a group on Facebook. She was the cervical cancer survivor of the group and had been in remission for a few years until it recurred in 2010. (Thank you Sandhy for inviting Jo to be part of our little group.) I will miss how Jo, even in the midst of treatment or traveling to London, would always know just what to say to calm down one of her online teal sisters.

It doesn't matter if you live in the US or in the UK, countless women and their families are impacted by gynecologic cancers every day. And it is not just about ovarian cancer. Do you know the other gynecologic cancers?

Cervical Cancer
Endometrial Cancer
Primary Peritoneal
Fallopian Tube Cancer
Uterine Cancer
Vaginal Cancer
Vulvar Cancer

The Women's Cancer Network website is a wealth of information about ovarian and these other gynecologic cancers. For 20 years the The Foundation for Women's Cancer ( Formerly the Gynecologic Cancer Foundation) has increased awareness, offered education and funded research of gynecologic cancers. They also provide women with the opportunity to learn more about ovarian and endometrial cancers through their Survivor's Courses. On November 6,2011 in Washington DC the Foundation will be hosting The National Race to End Women's Cancer an 8K and 1 mile run to raise awareness and funds for research. On November 5th the foundation also will host ovarian, uterine and HPV/ cervical courses.

Dee
Every Day is a Blessing! Thank you Jo for being one of those blessings!

Wednesday, October 19, 2011

Smoke Free for a Healthy NJ

Yesterday, I attended the Mercer County Cancer Coalition meeting.

The first hour of the meeting was a presentation by Cathy Butler the Program Coordinator of Mom's Quit Connection . The Connection reaches out to pregnant and new mothers in NJ to help them quit smoking. Honestly before this meeting I didn't know this group existed.

The presentation called "Ask. Advise. Refer." taught how to deliver effective smoking cessation advice and how to refer others to Mom's quit Connection and the NJ Quitline . It also presented information about tobacco use in NJ , disease caused by smoking , second hand smoke and third hand smoke.

Did you know?
  • 14.4% of adults in NJ identified themselves as smokers.
  • Smoking causes cancer , heart disease, stroke and lung diseases.
  • Each cigarette contains 2 mg of nicotine
  • Nicotine stimulates dopamine release in the brain.
  • Smoking 16-25 cigarettes a day increases risk for Type 2 diabetes to three times that of a non-smoker.
  • Second hand smoke contains about 70 different chemicals.
  • Thirdhand smoke refers to toxins from cigarette smoke that stick to soft /porous surfaces.
  • All hospitals in NJ are now smoke-free.

Feel free to learn more about how to stop smoking by checking out these websites:

It is not easy to stop smoking but it will not get any easier the longer you wait.


Dee
Every Day is a Blessing!

Monday, October 17, 2011

A Worthwhile Read


In July,at my support group meeting I mentioned that I had just finished reading The Immortal Life of Henrietta Lacks and had written about it on this blog. Another survivor asked me if I had read The Emperor of All Maladies - A Biography of Cancer by Siddhartha Mukherjee. She told me that it should be the very next book I read.

I put my name on the reserve list for the book at my local library and I waited. But early last month I decided to not wait any longer and I purchased my own copy. I am so glad that I did.

Don't let its large size, 470 pages, stop you. The Emperor of All Maladies is a brilliantly written history of cancer. From the first description of cancer in Egypt in 2500BC to describing the discovery of the drug Gleevec and the Human Genome project, Mukherjee kept me engaged. The glimpse we had at the care he provided his patients was wonderfully linked to the history. Mukherjee presents complex microbiological and genetic processes in a way that is easy to grasp. As I read about the ras pathway I found myself wishing I had read the book prior to going to the ASCO conference in June.

I finished the book feeling that each research development described, some with more positive results than others, has given us a better understanding of cancer that ultimately will lead to - dare I day it - a cure.

I highly recommend this book.

Dee
Every Day is a Blessing!

Saturday, October 15, 2011

8th Annual Women's Wellness Day Princeton - Nov 12th




November 12th
8am -2pm
ETS, Conant Building, Princeton, NJ
$60 nonmembers, $50 members
Registration details on flyer above . Register online at www.hearttoheart.org

Dee
Every Day is a Blessing!

Friday, October 14, 2011

Women's Cancer Conference - Philadelphia 10/28/11

Penn Women’s Cancer Conference

October 28, 2011

7:30 – 3:30 PM

Hilton Hotel, 4200 City Avenue, Philadelphia, PA 19131

Cost: FREE

The Abramson Cancer Center is pleased to present the 1st Focus On Women’s Cancers Conference featuring:

Ø Life After Breast Cancer

Ø Focus On Gynecologic Cancers

Ø Focus On Your Risk of Breast and Ovarian Cancer

This day is designed to address the personal and medical issues facing breast cancer and gynecologic cancer patients as well as those at risk for breast and ovarian cancers. Patient’s loved ones and caregivers are encouraged to attend as well. This conference is FREE of charge.

Please register for only ONE conference but feel free on the day of the conference to attend session at ANY of the three conferences.


View the full agenda and register online at OncoLink.org/Conference/WomensCancers or call 1-800-789-PENN (7366).

Unable to Attend?

Attend in person or via Livestream! We will be streaming the Focus On Gynecologic Cancers conference in its entirety atPennMedicine.org/Abramson/WomensCancersLive. Log on to watch and submit questions.

Additionally, conference will also feature a web-chat. Breast cancer and gynecologic cancer experts will answer questions about risk, diagnosis and treatment. Submit questions in advance at OncoLink.org/Webchat.

Gynecologic Cancers Webchat, 10/28, 11:45 AM, EST

Breast Cancer Webchat, 10/28, 1:15 PM, EST


Thank you U Penn for holding this conference.


Dee

Every Day is a Blessing!

Monday, October 10, 2011

Sunday, October 9, 2011

Pink Sundays?

I watch a lot of football . Mostly college games. We've been Rutgers season ticket holders for almost 20 years now. But I also watch the pros on Sundays and Monday nights. I've followed the Jets since my honeymoon when my husband and I saw the Jets beat the Dolphins in the Orange Bowl. Yes, that was many years ago.
So how many of you noticed the pink gloves, towels, etc on the NFL payers this month?

Well the NFL has the "Crucial Catch" campaign in place for the month of October. From nfl.com:

"ABOUT A CRUCIAL CATCH
The NFL, its clubs, players and the NFL Players Association are proud to support the fight against breast cancer. Our campaign, "A Crucial Catch", in partnership with the American Cancer Society, is focused on the importance of annual screenings, especially for women who are 40 and older. Throughout October, NFL games will feature players, coaches and referees wearing pink game apparel, on-field pink ribbon stencils, special game balls and pink coins - all to help raise awareness for this important campaign. All apparel worn at games by players and coaches, along with special game balls and pink coins will be auctioned off at NFL Auction (www.NFL.com/auction), with proceeds benefitting the American Cancer Society and team charities. This is an issue that has directly touched the lives of so many in the NFL family, and we are committed to helping make a difference in breast cancer prevention."


They are auctioning off items the athletes were given to wear during the games on this site. The least expensive bid I saw today was a $65 sideline cap worn by Randy Stark. The most expensive was a Ray Rice jersey whose bid was $4009. I am a big fan of Ray Rice since he played at my Alma Mater, Rutgers, so this high bid made me smile. There were also many bids for various dollar amounts on shoes, jerseys, towels and caps. All profits go to the American Cancer Society. Last year the NFL donated over $1 million to the American Cancer Society.

The NFL Pink site also has a link to the NFL and American Cancer Society Breast Cancer Awareness and Youth and High School Initiative Toolkit , a link to a mammogram reminder and a link to the ACS site about healthy living. The Toolkit provides information about the American Cancer Society Making Strides Against Breast Cancer program and provides ideas for how community or high school football games can raise money for the program.

First, I am not totally adverse to the NFL using pink to raise awareness or funds for breast cancer research or to provide mammograms for women who can't afford them. My sister passed away from breast cancer and many of my friend's have been diagnosed with breast cancer and a friends father was diagnosed with breast cancer. Did you know there is a genetic link between breast and ovarian cancer (BRCA1 and 2 mutations)? I am not adverse to having NFL football teams raise awareness for various illnesses or chronic conditions.How about raising awareness of heart disease or diabetes? Wouldn't one weekend in October be enough to make the point to women and the significant male's in their lives the importance of mammograms , healthy eating and exercise?

Why doesn't the NFL provide awareness for other cancers? What about raising funds for research to develop biomarkers or screening tests for those cancers that don't currently have those tests-such as ovarian or kidney?
I don't have answers to these questions.

I did find an article by Aaron Gordon on the Good Men Project that seemed to provide some answers to those questions. His post "Why Does The NFL Care About Breast Cancer" raises some interesting points regarding marketing.Have you noticed all those pink and woman-sized clothes on the NFL shop site. A study done in 2006 showed that 69% of all attendee at NFL games are male so maybe the NFL wants to increase women's attendance at football games and increase revenues . Interesting points.

On a more personal note to the NFL,
Women have ovaries too!
I challenge you, the NFL, to run a public service announcement / TV commercial explaining Ovarian Cancer risks and symptoms next September during Ovarian Cancer Awareness Month.
Thank you in advance.

Dee
Every Day is a Blessing!