Monday, December 30, 2013

Celebrating my Blog's 6th Anniversary

Six years ago today I started this blog. My goal was to talk about my journey as an ovarian cancer survivor and share information with women diagnosed with the disease in NJ.

My blog has come a long way since 2007. I now cover more research news and scientific meeting highlights. Over the past year, I have written about my recurrence anxiety,  research news, fundraisers and provided information about the new #gyncsm twitter chat that I co-moderate. I also posted pictures from my trip to Perth, Australia and the birth of my second grandson.

This month NOCC shared my post titled Advice From My Christmas Past on their Facebook page. I had 200 new visits to that page which lead to a December page view total for my blog of over 3000. I appreciate NOCC's support of my blog.

Thank you to all my readers for your comments, shares and e-mails . 
May you all have a Happy and Healthy 2014. 

Even after over 800 posts I look forward to providing you with the latest research news and events of interest to ovarian cancer survivor and caregivers in New Jersey.

Every Day is a Blessing!

Tuesday, December 24, 2013

Peace Joy and Love

At this blessed time of the year 
I wish all my readers 
Peace, Love, Joy 
 Merry Christmas

May your year ahead be a 
Happy and Healthy one.

Amber wishes you a Merry Christmas too!

Every Day is a Blessing!

Tuesday, December 17, 2013

When My Alma Mater and Cancer Center Work Together

In July, Rutgers University, my alma mater, and The Cancer Institute of New Jersey(CINJ) where I have been treated merged. Recently, I have noticed the wonderful collaboration between the doctors/ researchers at CINJ and the professors at Rutgers.

Just the other day I read two articles about that collaboration.

In Rutgers Today, you will find the article Battling Cancer with Big Data .The article discusses doctors at CINJ collaborating with computer engineers at the Rutgers Discovery Informatics Institute to determine a better way to treat patients with rare cancers and those with poor prognosis.  Manish Parashar is Director of RDI2.

“Our team provides the computational engine to review thousands of images, so our      collaborators at the Cancer Institute can analyze these images, search the database, test hypotheses and answer important questions,”Parashar says. “We take the imaged samples and radiology studies from one patient and ask, ’Have I seen a case like this before?’”

Analyzing the data and using matching algorithms can be done in a matter of hours.The team is studying rare pediatric cancers as well as ovarian and pancreatic cancers and sarcomas. A clinical trial is ongoing.

Surviving ovarian cancer: Rutgers scientists attack drug resistant cancer cells presents the research being done by one of my Gynecologic Oncologists, Dr. Lorna Rodriguez and Tamara Minko, professor at Rutgers Ernest Mario School of Pharmacy.  CD44 is a membrane protein which when over expressed causes ovarian cancer metastasis and drug resistance. In their study, which used lab mice, the researchers found that by using small inhibiting RNA molecules to decrease the level of CD44 and the chemotherapy drug paclitaxel  they were able to cause cell death and tumor shrinkage in the mice.
Journal article:

Targeted Nanomedicine for Suppression of CD44 and Simultaneous Cell Death Induction in Ovarian Cancer: An Optimal Delivery of siRNA and Anticancer Drug

I am excited to see what the future of cancer research will look like as my Alma Mater and my cancer center continue to work together.

Every Day is a Blessing!

Sunday, December 15, 2013


I was excited when my daughter and her family moved to California and began a new stage of their lives. My husband and I were happy to take an early Christmas trip to see them. Now you understand why I haven't posted in 14 days.

It didn't matter that the temperatures were cold outside, below freezing some mornings, because my husband and I were busy with our two grandsons. We playing games, colored, read books and created weird train track designs with John. Yes, the Thomas the Tank Engine collecting has begun. We feed Thomas, watched him roll over and laughed at his giggle.

We saw the graduate school my son-in-law attends, took a ride on 17 Mile Drive and enjoyed the delicious meals my daughter made. It is hard to put into words how thrilled I am to have the chance to spend time with my daughter and son-in-law and to watch my grandchildren grow. I  can remember times in 2005 when I didn't think I would make it to Christmas.

So except for a few tweets I didn't talk or think about cancer the entire time. I wasn't Dee the ovarian cancer advocate, I was simply Grandma. And that has done wonders to enrich and energize my life.

Every Day is a Blessing!

Sunday, December 1, 2013

George Johnson's "Cancer Chronicles..."

I often describe myself  as a cancer information "hound". I am always sniffing out new information about cancer in general and gynecologic cancers in particular.

I first heard about George Johnson's new book Cancer Chronicles Unlocking Medicine's Deepest Mystery in September. George Johnson is an accomplished science writer. He has been published in the New York Times, National Geographic and  Scientific American and wrote nine books. When I learned that he was prompted to learn more about cancer and write this book when his wife Nancy was  diagnosed with uterine papillary serous carcinoma I knew I had read the book. So I put my name on the  reserve list at my local library.

Last week my name moved to the top of the list and I picked up the book. I began reading it as soon as I got home.. The first chapter with its' discussion of cancer in dinosaurs (spinal bones from Hadrosaurus skeletons exhibit cancer.) drew me right in to the book.

Johnson covers topics from epidemiology and the structure of DNA to clinical trials, risk factors and mutations. He discusses how chemicals and environmental issues originally thought to cause cancer have been found to play a less prominent role. The book is an interesting mix of history ( he speaks of  Madame Curie in a section on radiation) and recent studies of herceptin, hedgehog genes and translational research. His wife's journey through surgery and treatment are woven into the factual information he provides.

Johnson never forgets who his audience is. He explains difficult concepts in a way that any cancer patient, survivor or caregiver can understand. He provides 60+ pages of notes and sources at the end of the book.

I highly recommend this book and regret having to return this copy to the library. I guess I will just have to buy my own copy.

More information about the book and author can be found at

Every Day is a Blessing!

Wednesday, November 27, 2013


Lots to be thankful for
my husband
my children
my grandsons
my nieces and nephews
my sister and brother-in-laws
my mother-in-law, and husband's brothers and sister
my cousins
my friends and neighbors
my doctors, nurses and staff
my dog
my agility class instructor and fellow students
my bucket list trip to Australia ( special thanks to Matt)
my fellow ovarian cancer survivors

Wishing my readers a very Happy Thanksgiving.

Every Day is a Blessing!

Monday, November 25, 2013

Grant Applicants Wanted

The Kaleidoscope of Hope Foundation is an ovarian cancer foundation based in NJ. The Foundation has awarded more than $ 2.5 Million to ovarian cancer research since its founding in 2000. I wrote about their recent research grantee, Dr George Preti recently on this blog.

If you are a cancer researcher, information on how to apply for one of KOH's 2014 grants is available here. Grant applications are due by January 13, 2014. KOH has a Scientific Advisory Committee which provides an expert preliminary review of the research grant applications and then shares their invaluable recommendations to the KOH Board who makes the grant award decisions.

Foundations like KOH and their support of cancer research make a difference in the futures of women diagnosed with gynecologic cancers. 

Every Day is a Blessing! 

Tuesday, November 19, 2013

Women's Best Friend Helping To Find An Ovarian Cancer Screening Test

Yesterday, I was part of a group that visited the Penn Vet Working Dog Center in Philadelphia. The group included the president and vice-president of the Kaleidoscope of Hope Foundation (KOH), Dr. George Preti from Monell Chemical Senses Center and Jenifer Trachtman, Director of Development at Monell Chemical Senses Center.

This past April KOH awarded a grant to Dr Preti for his research titled " A Novel Aproach to Ovarian Cancer: Screening Using an Interdisciplinary Investigation of Its Volatile Signature".  The research will determine the volatile chemical signature (odors)  given off by the blood of ovarian cancer patients in the hopes of developing an effective early screening test. Currently, Dr Preti is collecting the odors using a techique called solid-phase microextraction. The odors are then injected into a gas chromatograph which will separate the odors into individual compounds and then they compounds are sent to a mass spectometer which gives the structure of the compound. He is running this test on blood from ovarian cancer patients, blood from control patients and blood from patients with benign ovarian conditions. He will be looking at the different compounds found and levels of the compounds among the samples.

Dr. Preti is collaborating with Dr Cindy Otto, Executive Director of the Penn Vet Working Dog Center whose aim is to determine the sensitivity of dogs in detecting ovarian cancer tissue and blood and distinguishing disease samples from normal samples. Dr. Otto, Anne Marie DeAngelo and their team are training dogs to sniff containers and pick the one that holds the ovarian cancer tumor tissue.  The current tissue samples predominately from women with serous papillary epithelial ovarian cancer.

There are currently three dogs involved in the study.  We saw two of the three dogs in training. The dogs are brought into a special room set aside for this research. They sniff each container and react to the correct sample by sitting and barking when they find the correct one. The first dog we saw was named Mc Baine.
McBaine sat down next to the tumor sample container . A series of containers - one with the  tumor sample in it - were  placed on the aluminum shelf on the walk. 
The second dog was named Ohlin. The third dog is a German Shepherd named Tsunami.
This is Ohlin as he begins his session.

The collaborative research will also test if the volatile molecules given off by the plasma is what is being identified by the dogs.

The final goal of the research is to develop an electronic sensor as an "e-nose" to detect ovarian cancer. Dr Preti is working with Dr Johnson, Dept of Physics and Astronomy University of Pennsylvania, who will use nanotechnology to develop a sensor to detect the compounds he and the dogs found.

You can learn more about Dr Preti's olfactory research in the New York Times Magazine article "What Does Cancer Smell Like?" .

After watching a series of training sessions for the ovarian cancer research study we were invited to watch Pat Kaynaroglu and her team as they trained the search and rescue dogs. We went outside behind the Center where two fenced in areas were located. The first area was an agility area for training. This area allows the dogs to practice climbing on top of, under and through different obstacles.

The second fenced in area is full of building debris from cement ruble to pallets to plastic piping. This training requires one of the staff members to hide, completely covered under or in different parts of the ruble. The dogs are sent to search and use their sense of smell to find the hidden "victim". The dogs  will then bark and scratch where the person is located.
This yellow Lab was barking to let his handler know that he found someone.

Thank you Dr Otto, Ann Marie, Pat and the staff of the Penn Vet Working Dog Center for allowing me to visit. I appreciate the time you took to answer my many questions about how you train the dogs. I picked up a few good pointers that will help me as I continue to train my dog for agility competition. 

Every Day is a Blessing! 

Wednesday, November 13, 2013

Survey for Women Diagnosed with Ovarian Cancer

I received this e-mail yesterday and wanted to share it with my readers.
Dear Support Group Leader,

My name is Dr. Sandra Cesario and I am on the faculty in the College of Nursing at Texas Woman’s University in Houston, Texas.  Almost 40 years experience as a women’s health nurse and losing a 29-year old daughter to ovarian cancer have led me on a path of research about the risk factors for ovarian cancer.

The purpose of the proposed project titled Risks, Triggers, and Protective Factors Related to the Expression of Ovarian Cancer, is to collect information from women who have been diagnosed with ovarian cancer, as well as women who do not have the disease, to determine if there is clustering of risk or protective factors that increase or decrease a woman’s chances of developing ovarian cancer.  The research question to be addressed is: What is the constellation of factors that predisposes a woman to be at increased risk for developing ovarian cancer?

I am requesting your assistance in recruiting participants for this study.  As a support group leader or ListServ monitor, you are likely to be in contact with ovarian cancer survivors and their families who may be interested in completing this anonymous online survey.  Study participation is completely voluntary and women are free to discontinue their participation at any time.  I am primarily seeking English-speaking women, over the age of 18, who have been diagnosed with ovarian cancer. However, ALL women, with or without cancer, are welcome to complete the survey.  This study has been approved by the Institutional Review Board (IRB) of Texas Woman’s University in Houston.
Would you be willing to post the url for the internet survey on your website, include it in your newsletter, distribute to your email list, and/or offer the opportunity to women at your next in-person contact?
If so, please advise the women to click on the following link (or copy and paste it into your web browser)
to complete the survey via the secure PsychData system. It is estimated that the survey can be completed in 20-25 minutes.

An email address developed specifically for this study has been created if you have additional questions.<>
I value your time and interest in this topic. If you make the decision to participate, thank you very much for your input that is crucial to the outcome of this study.


Dr. Sandra K. Cesario
PhD Program Coordinator and Professor
College of Nursing, Texas Woman’s University
6700 Fannin Street
Houston, TX  77030-2367
Office Phone:    713-794-2110

I will be taking the survey. Will you?

Every Day is a Blessing!

Monday, November 11, 2013


Recently the #bcsm community discussed the invisible scars of breast cancer. It was an interesting and fast paced chat on Twitter. Later one survivor described her scars in a blog posted on Nancy’s Point . I tweeted that gyn cancer survivors have invisible scars too and then decided to write about it here. 

Scars can be both visible and invisible. I have a number of visible scars. I have a scar on my neck from thyroid surgery in 1982. From my initial hysterectomy and debulking surgery in 2005, I have an eight inch vertical scar that begins at my belly button. From my liver resection and spleenectomy in 2008, I have two scars. One that travels 10 inches horizontally across my abdomen below my rib cage and another 4 inch vertical scar that meets up with the scar from my hysterectomy.The scars together have the shape of a capital letter T. 

These scars are starting to fade since my last surgery. But harder to fade are the scars that are invisible to others.These scars are very individual just as every woman diagnosed with ovarian cancer has a similar but different journey with the disease. Some of these scars can be physically painful while others can be emotionally painful. 

My first invisible scar is the neuropathy in my toes. Sometimes my toes are numb and sometimes my toes feel as if someone is sticking a knife into them. No one can tell when my toes are  bothering me but me, unless of course you have caught me taking off my shoe and rubbed my toes. 

I have trouble remembering the names of everyday things. Instead, I describe what it is I am talking about. I have written about this happening a few times in this blog. I read things and reread things and reread things again. I write entries for this blog and leave blank spaces because I can’t remember specific words. It takes me multiple tries to write what it is I want to say. ( Three days to draft, reread, rewrite this entry.) When I give talks I write the speech and then practice it over and over again. I am happy when my family can tell me the word I am missing and help me out.  But at times not remembering has brought me to tears.  I am sure that the invisible scar of chemobrain as survivors call it or cognitive impairtment as professionals call it  is due to the life-saving 16 chemotherapy treatments that have put me in remission. 

Instant menopause has brought it’s own set of invisible scars. Sure I was 50 and not having another child when my ovaries, uterus etc were removed but that doesn’t mean  the physical changes that have occurred due to the surgery are any less painful. Some women in their 20s and 30s are dealing with loosing their fertility. Some of us are experiencing hot flashes sooner than expected and some of us are dealing with issues that are difficult to talk about even with our physicians. 

Then there is the invisible scar due to worrying about a recurrence or waiting for the other shoe to drop. This scar is invisible to others most of the time. It is my own personal worry. Is that gas or bloating? Is that pain under my ribs from scar tissue or is It back? Why am I urinating more frequently? Most times I can talk myself back from the edge by telling myself that I have a plan which includes seeing my doctor frequently enough that if It does come back we will treat It quickly. Sometimes this scar does become visible as “scanxiety”. I am not a pleasant person to be around when it comes time to have a CA-125 blood test or a CT scan. Until the results are in and I get the all clear for 4 more months I am a nervous Nellie. 

I also have an invisible scar from loss. Being in the club of ovarian cancer survivors automatically brings along with it loss.  Support groups and involvement in local ovarian cancer organizations has afforded me the opportunity to share this journey with some pretty incredible women. We have helped each other along the way with hugs, phones calls, e-mails and laughs. But along with this joy there is the pain of their loss. Every death takes it toll. Would I rather to have never met these woman? No not at all. It was wonderful having them in my life. 

Those around us may think that since we aren’t in active treatment cancer no longer impacts our lives. But for those of us living with a cancer diagnosis and treatment may be sad or scared or nervous long after. We may put on a happy face to our family or friends because we don't want them to worry. Sometimes we can deal with these scars ourselves and sometimes we need help from support groups, social workers or therapists. We are not weak when we reach out for help  but rather we are exhibiting strength in recognizing these invisible scars. 

Every Day is a Blessing! 

Monday, November 4, 2013

Have The "Talk"

Updated 11/6/13
I am not referring to the "Birds and the Bees" talk we have with our young children although that one isn't always easy either. I am referring to having the end-of-life talk. I see many of you quickly moving on to a different website. But wait. Stick around. I know this is hard. It is rough writing about it as it is having the TALK.

You can talk about end-of-life issues before someone is ill or they are moving into an assisted living or need extra care at home but it seems in our society that doesn't happen very often. I think very few people feel comfortable because it hurts, no matter which side of the table you are sitting on.

Since my first surgery back in 2005 I have had an Advanced Directive. An Advanced Directive is a legal document that will provide your medical team with your care preferences if you are no longer able to make those decisions. In NJ there are two parts to the Directive, a Proxy Directive and an Instructive Directive.

The Proxy Directive, also known as the Durable Power of Attorney for Healthcare,  allows you to appoint a person to make medical decisions for you when you can't make them yourself. This can be temporary or long term and goes into effect only when you are not able to make the decisions yourself.

The Instructive Directive, also known as a Living Will, is a document that tells your health care team and your family what life-sustaining treatments you want or don't want under different conditions. Life-sustaining treatments include any device or procedure that would extend your life by taking over the function of some body organ. The treatments can include surgery, a ventilator, drug, therapy or providing fluids or nutrition.  Again, the document goes into affect when you are not able to make the decisions yourself.

Why am I even mentioning these documents? These documents are a good place to begin the discussion about end-of-life issues with your family and to get you to think about what you want to happen. I am a bit of a control freak so I worked out in my mind what I wanted to do before I spoke to my family. I hope it makes it easier for them and my health care team when the time comes. It is also a burden I don't want them to have to carry or feel guilty about later on.

Who do you trust to direct your care when it comes to health care decisions? Is that person comfortable being your health proxy? Ask them. And be sure to discuss with them the situations you may face and make them aware of the times when you want life-sustaining treatment or situations when you don't. I have a second proxy lined up if my first proxy for some reason can not make the decisions at the time I need them to be made.

Now think about under what conditions you want life-sustaining treatment. What treatment do you want or not want if you are permanently unconscious? What treatment do you want or not want if you are terminal? Do you want a treatment if it will only prolong imminent death? Or do you want a treatment if it may be ineffective? Or if your condition is irreversible and the treatment may have little benefit do you want the treatment ? You can even pick and choose treatments under different conditions . For example, you want fluids and nutrition but not surgery.

You don't need a lawyer to fill out these forms. Many are available online.  Make sure your family knows where your documents are located. You can always update the directive at any time for any reason. Just make sure you and your health care team are working with the most recent document.

If you live in NJ take a look at this site for more information and copies of the documents you can print out and fill in.

Additional information on end-of-life and palliative care may be found here on the CancerNet site.

I know the talk I had with my husband back in 2005 was not easy but I feel better knowing I have a plan in place.

Every Day is a Blessing!

Wednesday, October 30, 2013

Guest Blogger: Teri Smieja Author

I first met (if that is the word you use when you find a fellow advocate on Twitter)  Teri during a recent #BCSM chat. I followed her and learned that she was the co-author of the book
Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition  . I direct messaged her about her book which is written for health professionals. She has been kind enough to write this guest blog. When I finish reading  the book I will be writing a review.   


My name is Teri Smieja. I’m a BRCA1 Previvor, BRCA blogger, co-creator of the largest, active BRCA support group on Facebook and the co-author for an epic new book in the BRCA / HBOC realm. Our book, Letters to Doctors: Patients Educating Medical Professionals through Practical True-Life Experiences: The BRCA and Hereditary Breast and Ovarian Cancer Syndrome Edition. Letters to Doctors went ‘live’ on on October 18th and hit #1 in two genres within the genetics and new medical books categories on the same day it was released. Weeks later, we are maintaining the #1 spot in genetics and hope to do so for many months to come.

Letters to Doctors is unlike any other BRCA book on the market in that the main target is the health care professional. Letters to Doctors has much inside of it to help the patient learn how to better advocate for themselves too, but our main focus is the medical professionals. We plan to change the way things are being done, so that people will no longer needlessly die from breast and ovarian cancer. With the advent of genetic testing, more and more BRCA positive people such as myself are making pre-emptive strikes against cancer. Unfortunately there is much misinformation among those in the medical community and it is our goal to create a paradigm shift in the way doctors treat their high-risk patients.

My co-author, Dr. Jonathan Herman (a practicing ob/gyn in NY) and myself are making no money from this book, as all profits after production costs are going straight to BRCA / HBOC related charities. We are hoping that everyone will purchase two copies; one to keep and one to give to their doctor.

Those in the high-cancer-risk world are erroneously being told by their doctors too often that:

·         You are too young to worry about this.
·         You are too old to worry about this.
·         You can’t get this mutation from your father’s side of the family.
·         Your insurance won’t pay for genetic testing.

Doctors are missing giant red flags in their patient’s intake questionnaires, such as:

·         Family history of ovarian cancer (ovarian cancer is always a red flag).
·         Family history of male breast cancer.
·         Family history of breast, ovarian, colon, pancreatic cancers.

The dots are just not being connected. Many patients rely on their doctors to be the most informed, but in the BRCA / HBOC world this is just not always the case, and people are DYING because of it.

Dr. Herman and myself believe that our doctors want to do right by us, but are basing their practice on outdated information and often times think that their patients are not emotionally strong enough to handle the implications that can come of BRCA testing. We feel that it is not our doctor’s place to judge whether or not their patients can handle this knowledge. It is not their place to tell us that genetic testing is too expensive (last time I checked, funerals were pretty pricey as well!), and we fill out stacks of paperwork prior to our doctors appointments with the expectation that it will be read, and understood properly.
It is our intention with Letters to Doctors, to help our medical staff understand better, how to do their jobs, and to truly see how important their words are to their patients.

We truly wish to save lives with this book, and know that we can do it.


Thank you Teri for stepping forward to make a difference in the lives of women and their doctors. 

Every Day is a Blessing! 

Thursday, October 24, 2013

Research News: Gene mutations, stem cells

Same Mutations in 12 Different Cancers

An article titled

Mutational landscape and significance across 12 major cancer types

appeared in the journal Nature. Researchers at the Washington University in St Louis analyzed data from the The Cancer Genome Project. They  looked at over 3200 tumors in 12 different cancers. They were looking at mutations and insertions/deletions in "breast adenocarcinoma (BRCA), lung adenocarcinoma (LUAD), lung squamous cell carcinoma (LUSC), uterine corpus endometrial carcinoma (UCEC), glioblastoma multiforme (GBM), head and neck squamous cell carcinoma (HNSC), colon and rectal carcinoma (COAD, READ), bladder urothelial carcinoma (BLCA), kidney renal clear cell carcinoma (KIRC), ovarian serous carcinoma (OV) and acute myeloid leukaemia (LAML; conventionally called AML)  "

In those cancers they noted 127 significantly mutated genes(SMGs) . They found that that TP53 mutation played a roll in serous ovarian cancer , breast and head and neck cancers and feel that a common treatments strategies could be used for these cancers.

Source: Nature
WSJ article  

Ovarian Cancer Stem Cells in Mice

The Cornell Daily Sun recently published the article

Cornell Researchers Find Possible Origin of Ovarian Cancer

about the research of Dr. Alexander Nikitin, professor of pathology. In his research, Dr Nikitin found stem cells in the hilum of mice. "Many other cancers, such as stomach and cervical cancer, are known to originate in junctions between the layers of tissue that cover the organ, according to NikitinThe hilum is an area found between the epithelial cells on the surface of the ovary and the mesothelium cells found inside layers of the ovary. He took these stem cells along with differentiated ovarian cells and inactivated the tumor suppressor genes. He then injected the cells into  health mice.  The stem cells grew aggressive tumors while the ovarian cells grew tumors infrequently. Dr Nikitin is now looking for stem cells in the same region of the ovaries in humans.

Source: The Cornell Daily Sun 

Every Day is a Blessing!

Friday, October 18, 2013

NED the Documentary Showing in NJ

Tugg - No Evidence of Disease in Paramus, NJ on Tuesday, November 05,  7:30pm

Are you a gyn cancer survivor or caregiver?  Than you should consider seeing this new documentary about NED. NED is a group of 6 GYN Oncologist surgeons from all over the U.S. who use their band to raise awareness and research dollars for women's GYN cancers. The documentary introduces each of them and captures how it all began. Several women's stories highlight the urgency in treatment and challenges of finding early detection tools and treatment. 

The documentary NED (NO EVIDENCE OF DISEASE) will be shown at the AMC Garden State 16 at the Garden State Plaza Mall in Paramus on Tuesday November 5, 2013 7:30-9:30 . ( There are a limited number of viewings of this film in the tri-state area.) 

Dr Nagarsheth of Englewood Hospital is the drummer and percussionist with great passion for his work and music. He will be offering a question and answer time after the movie. 

Tickets are available . 

Every Day is a Blessing! 

Thursday, October 17, 2013

Unremarkable Again

On the evening of October 1st I drank my first Readi-cat drink in preparation for the first CT scan in a year . I added some chocolate syrup to the rather thick, chalky drink to make it more palatable. Drinking through a straw helps and using a Minnie mouse glass just makes it a bit fun. I also try to imagine it is a chocolate shake not a barium sulfate drink.

The morning of October 2nd I drove to the radiology facility. The nurse there was great and gently started the IV for contrast. I was done in a short period of time and drove home. Later in the day my gynecologic oncologist's nurse called me to say the scan was clear. But you know I wasn't totally convinced I was a-ok I wouldn't feel that way until I saw my doctor and she did an exam. I was going to have to wait for that to happen though since my appointment wasn't until the 17th.

On Tuesday I went for a port flush and blood draw for the CA-125 test ( the tumor marker test for ovarian cancer). The nurse who did the flush was excellent and after saying hello to one of my favorite nurses I drove home.

Today( Oct 17th) I had my 4 month visit to my gyn-onc at the Rutgers Cancer Center of New Jersey. She did the internal exam, told me my CA-125 result and that my CT scan results were good. Then she asked me when I wanted to see her again. It is nice to finally be a part of the decision.  I'm not quite ready for going 6 months so she said another appointment in 4 months would be fine.

As I left her nurse handed me a copy of the CA-125 results and CT scan report.  I've gotten pretty good a reading those reports. I checked that they found my port in the chest CT, and didn't find my spleen in my abdominal CT.The report show no fluid or lesions. All three scans used the word-  Unremarkable. I like being unremarkable. I feel pretty wonderful.

If only I can get less anxious before scans and doctor visits. That would be remarkable.

Every Day is a Blessing!

Monday, September 30, 2013

Teal Walk to Teal Talk - A Perfectly Teal Weekend

A Walk - Saturday
A few weeks ago I formed Team 1 Reason and registered my husband and I to walk in the Kaleidoscope of Hope Foundation's Avon-by-the-Sea walk. KOH raises funds for ovarian cancer research. On Saturday on a beautiful autumn morning we drove east to the shore. I was thrilled that my cousins Fred, Janine, Marion and Allison joined my team and many more family and friends contributed to the walk. Although the last donations to the team are not yet posted online it looks like we raised ~$ 2900 for Ovarian Cancer research. The entire walk raised ~ $101,000 for research.

We all enjoyed a day at the shore and are already planning to attend next year.
Walkers gathering on the Avon NJ Beach before the KOH walk.

Team 1 Reason

A Talk - Sunday

I wrote about teen Kristin Gmunder's role in an Ovarian Cancer Awareness Day in my last post.

She put together a wonderful program which included these presentations:
"ovarian Cancer 101" by Wilberto Nieves-Neira one of the wonderful gyn-oncs at CINJ.
"Genetics of Ovarian Cancer"Michele Horner MS, CGC St Peter's University Hospital 
"Preventing Cancer through Nutrition" Teresa Grasso , RD,CDE St Peters University Hospital
"Advocating for Government Support" Janice Swierczek , VP- Teal Tea Foundation

I told my story as did Kristin's Aunt, Karen Herzog a survivor who is part of OCNA's Survivors Teaching Students program.

I can say I walked away learning something new from each of the courses. Did you know that you should not have more than 66 grams of fat at day if your daily intake is 2000 calories? Did you know that ovarian cancer is heterogeous? ( There is not a dominant mutation but rather many mutations.)  Did you know that you can reduce your risk of ovarian cancer by having your first child before the age of 25? Did you know you should eat multicolor fruit and vegetables to get good anti-oxidants? This was a very nice and informative day. 

Great Job Kristin!

Every Day is a Blessing!

Tuesday, September 24, 2013

Ovarian Cancer Symposium Sept 29th Saint Peter's University Hospital

Last month I was asked to be a part of an Ovarian Cancer Symposium at St Peter's University Hospital in New Brunswick. This symposium was not being organized by a national ovarian cancer organization or even a local organization. Rather it is organized by a young lady to raise awareness of the disease both her grandmother and aunt have faced. Kristin Gmunder, of Branchburg, is a junior in high school and this Symposium will help her achieve her Gold Award in Girl Scouting. She believes that women of all ages should know the symptoms and risks of ovarian cancer.

The day will include speeches on ovarian cancer symptoms, genetics, nutrition, advocacy and survivor stories. Details about the event can be found here.

I am impressed by the motivation and organizational skills of this young lady and I look forward to meeting her in person!

Every Day is a Blessing!

Wednesday, September 18, 2013

What September Brings

Some days during September I wake up feeling great.  The sky is bright blue and cloudless. Temperatures start out cool and get a bit warmer as the day goes on. The weather here in NJ has been beautiful and I’m here to enjoy it.

Some mornings are just as beautiful but my mood is not as upbeat. With the bright sunny day also come the memories. I mentioned this to my husband yesterday as we took a ride to pick up some treats for our dog. I said I remember when we lived in Edison and I would put a cushion on the chair, wrap a blanket around my legs and sit out on the patio in the sun. I was in the midst of chemotherapy and couldn’t do much more than that. Some days I was so fatigued that I never made it outside but would sit by the window up in my bedroom just to get some sun on my face. I would hear the school bus drop off the kids next door. Life outside my room was normal but inside my room, well that was another story.

Some days I wake up ready to spread awareness. Writing my blog, tweeting, co- moderating a tweet chat, attending events and walking in the Kaleidoscope of Hope walk. September is Gynecologic Cancer Awareness month and women need to know their risks. Some of you might say “Dee you do that every day, not just in September”. You are right but somehow the intensity of awareness is magnified this month.

Then there are the days when my stomach feels a bit odd or my back hurts more than normal. Could that mean my cancer is back? Is it because I talk about the symptoms and risks for ovarian cancer over and over this month? Or maybe I am worried as I close in on CT scan time. “Scanxiety” is rearing its ugly head yet again. After all it was early October 2008 when I had a scan that showed the cancer had returned on my spleen and liver.

After 8 years I know the cycle of ups and downs I go through in September. The good days certainly outnumber the not so good days. And it is the support of family and friends that gets me through it all.

Every Day is a Blessing!

Tuesday, September 17, 2013

Globe-athon 2013

What is a Globe-thon you ask? Is it like a Walk-athon? Is it a Marathon? 

A few years ago Foundation for Women's Cancer held a 72 hour race around the Mall in Washington DC for physicians and  gynecologic cancer survivors and advocates.  The race was a huge success. Then someone brought up the idea of  holding a walk on the same day in countries across the globe.  

Today, Globe-athon is a  coalition of participants in  60+ countries who will walk  to raise awareness, education and research of women's gynecologic cancer's. This grass-roots international relay for gynecologic cancers will take place this year on the weekend of September 29th. People will march in solidarity with each other, women diagnosed with the disease, their caregivers and health care providers.  

Here is the reason why holding Globe-thon is so important.
"Global cancer statistics indicate that gynecologic cancers accounted for 19% of the 5.1 million estimated new cancer cases, 2.9 million cancer deaths and 13 million 5-year prevalent cancer cases among women in the world.  Each year, over 230,000 women are diagnosed with Ovarian Cancer worldwide. The majority of these women will die from the disease: Ovarian Cancer is responsible for an estimated 140,000 deaths per year, worldwide. Cervical Cancer is alarmingly on the rise in South and East Asia, Latin America and Africa with the incidence and death rate higher than it has been in 30 years.  These silent and deadly diseases are a major global priority. "(

In NJ you can join the Globe-thon by walking in the North Jersey NOCC walk in West Orange , NJ. 
Click here to register. 

For more information on Globe-thon and to help "shine a light on these under the radar, below the belt cancers" See the Globe-athon website  and follow them on twitter at 

Every Day is a Blessing!

Monday, September 16, 2013

We Did It! A Gyn Cancer Community is Formed!

As you know in August I agreed to be the co-moderator of the #gyncsm (gynecologic cancer) community tweet chat. Our first chat was scheduled for  Sept 11th.  There was a flurry of e-mails and tweets between myself and my co-moderator and the wonderful doctors who have agreed to advise and help moderate the chat.

I created a blog ( for the community and looked for sources to share during our discussion. Each day Christina Lizaso, my co-moderator and I tweeted about the chat to promote the event and contacted those we thought might be interested in joining us. Christina developed the topics for discussion and a script for the night so we would cover everything we hoped to cover.

Then on Sept 11th at 9pm EST the chat began. It was wonderful to see survivors,  doctors as well as caregivers, organizations and advocates join our discussion. We discussed the importance of seeing a gynecologic specialist, symptoms of our cancers and what they hoped to get from being part of our chat. If you missed joining us you can find the transcript here. In the end we had 38 participants and over 400 tweets using #gyncsm during that hour.

I still think it is pretty cool that we could put this all together in about a month's time, never meeting face to face. We communicated through twitter and e-mail. And we could only do it because of the hard work of my co-moderator  and the support of our doctors Matthew Katz MD, MJ Markham MD, Rick Boulay MD, Don Dizon MD as well as Tamika and Friends and the Society of Gynecologic Oncologists. Thank you to everyone who joined us. We look forward to building a vibrant supportive community for those impacted by gynecologic cancers.

Remember the #gyncsm chat is the second Wednesday of the month at 9pm EST. Looking forward to discussing Genetics and Personalized Medicine at our October 9th chat.

Every Day is a Blessing!

Tuesday, September 3, 2013

It Really is about Research Dollars

Over the holiday weekend there were many posts on facebook about Ovarian Cancer Awareness Month. I myself posted about hanging ribbons with the Lopez family in Edison. I have been hanging ribbons with them for over 5 years.

Then a friend posted her status. Let me paraphrase what she wrote.
I hope everyone out there hanging ribbons to raise awareness will work hard to lobby their Congressman to support cancer research funding. 

I agree with her 100%. It is wonderful to make women aware of the disease and its symptoms. This way women will get diagnosed at earlier stages. But we also need, dare I say even more than awareness,  the research to better understand the disease,  to develop a screening test for the general public and to better treat the disease. 

We need more federal dollars for research and more private research dollars. 
Lets look at the estimated FY 2013 NIH funding for 3 gynecologic cancers and HPV vaccine research provided by the NIH at

Cervical Cancer - $113 million
Ovarian Cancer - $148 million
Uterine Cancer -  $  42 million 
HPV/ cervical vacccine - $ 26 million

Together they do not equal the $800 million for breast cancer research. Actually most other cancers get more federal research dollars. Only Pancreatic and Liver cancer get lower funding than the gynecologic cancers. 
There is also an Ovarian Cancer Research Program(OCRP)  as part of the Department of Defense ( ) . The DOD OCRP program has a $20 million budget for 2013. 

So when the time comes for research budget discussions please spend the time to e-mail or call your congressman to ask to increase the funding for ovarian cancer research. Or if a local ovarian cancer organization raises funds for research through walks or auctions or other events - make a donation.  

Ribbons matter but funding for research is the key to save women's lives. 

Every Day is a Blessing!

Thursday, August 29, 2013

Cancer: My Unwelcome Traveling Companion (or: Who is @btrfly12?)

I am pleased to share this post written by Christina Lizaso my fellow moderator of the #gyncsm chat. 

Thanks so much to Dee for providing me a space here to tell my story. She is such a wonderful, influential patient advocate. I am working with her to build #gyncsm, an online community for those impacted by gynecologic cancers (cervical, ovarian, uterine, primary peritoneal, endometrial, tubal, GTD, vaginal, vulvar). Here's why I'm passionate:

Cancer has been a theme in my life, but one that I chose to ignore and let lie in the background. So here’s my story of how cancer has shaped my life to this point.

When I was in the first grade (circa 1983), I lost my maternal grandfather to pancreatic cancer. My “Papa” was one of the great men and heroes in my life up to that point. A coach and trainer of young men, he was also a journey-man philosopher. Pancreatic cancer being a “silent cancer” typically found in its advanced stages, there wasn’t much time to adjust to him being sick, weak, and gone. My dad would sneak me into his hospital room though a construction entrance because Papa considered me “his best medicine”, despite the age restrictions for visitors. After the funeral, I remember feeling a certain peace and coloring a picture of him as an angel going up from the graveyard to heaven. My grandmother lost a big piece of herself that day and remained tight in her shell in a house on a hill in the country. A good reminder to me to fight my own tendencies to remain closed off and hideout when the storms of life come.

Early pre-teen years brought the loss of my paternal grandmother. We aren’t actually sure if this one was cancer. She lived with us for a while during her illness and those were great bonding days. Both the good times (watching All My Children together that summer) and the inevitable bickering of pre-teen vs. another female in the house brought us closer. I’m told by my mom that the description we were given was that there was a growth wrapped around the artery to the lung cutting off circulation and limiting the oxygen in her blood. I remember being called to the hospital late in the night and receiving the news of her death. My mom, dad and I just stood in a big circle hug and cried for a long, lingering moment. Since she died within 18 hours of the above description, we did not seek further details. Her actual cause of death was a heart attack. The doctor actually told mom and dad: "The operation was a success but the patient died." That was quite an emotional night for all of us.

Later on, my great-grandfather passed away from leukemia. Now, he was in his 90s and his rickety old house was falling down around him. He always said not to worry because the house would outlast him, and he was right. He was a man of quiet confidence, as many farmers are, and I admired him greatly.

My mom was diagnosed with breast cancer in 1998 during my senior year of college. It seems ludicrous to me now that I don’t know the stage and type other than it wasn’t a lump, it was in the ducts. Looking back I know that I wasn’t there for her and my dad with the support they needed when faced with cancer. My mom was his everything. An only child, he had no siblings to lean on. My college was just across town, so I was close-by but I was dealing with my own process of facing this as a daughter. I did get her a beautiful ceramic angel with painted light pink skirt because that seemed more lasting than flowers or food.  My mom tackled cancer the same way she approaches everything, with research, an organized notebook and a plan. Having lost her dad to cancer, her attitude was GET THIS CANCER OUT OF ME. Mastectomy and no reconstruction. She was fortunate that it had not spread to the lymph nodes (so stage 1 or 2?) and she did not have to go through chemo. A few months after the surgery, it was Komen Race for the Cure time and we were there. It was powerful and moving being in a sea of thousands who had been through something similar. When in graduate school, I did the Race for the Cure in that city with a classmate who had been diagnosed and also flew back home to be on my mom’s team. It felt important to support her in that way.

Next came my maternal aunt. A different and more aggressive type of breast cancer than my mom’s. My aunt is a music teacher and organist with a passion for those may be overlooked in life. I had just started working at a hospital and I put my aunt in touch with the fabulous woman who ran the cancer store and I got her some lovely, soft turbans. Chemo was grueling but she pushed through it. Could I have done anything for her son, my cousin, to support him during that time? I don’t think I knew how. Later she had genetic testing and it didn’t indicate that others of us in the family should be tested. Said her cancer was most likely from some of the medications her mom had been taking while pregnant with her. She and my mom do Relay for Life together each year and gain strengthen from that community.  She’s had had two recurrences. The first was in the non-affected breast from the first round and was the same type as my mom’s. The most recent was a mix of cell types found and with the chemo she got an infection in her fingernails so bad there was at one point a chance she’d loose her fingertips. Cancer threatening the fingertips of an organist - how foul. Months later she got an infection behind her expander placed for reconstruction and had emergency surgery. She remains strong.

I was living on the third floor of an old house during grad school and that is where I was when I got the call that stopped my world. In what must have been one of the hardest conversations of his life, my dad told his “daddy’s girl” that he had leukemia, the same strain as his grandfather, CLL. The early on-set was later attributed to his chemical exposure in Viet Nam. I asked him if I should come home and he said no, to stay focused on school (a high priority of his for me his whole life) and wait for the holiday break. Grad school is stressful enough but this was just overwhelming. Again, it seems ludicrous now that I don’t know the details of his treatment regimen but my denial of cancer was that powerful. I wondered if he would make it long enough to walk me down the aisle and have a daddy/daughter dance at my wedding. And a couple years later in 2001, he did and it was the sweetest thing.

Dad joined all the on-line discussion boards he could and kept in touch with many others in the CLL community. Patients have to band together, be their own advocates, and have others pick up for them when they can’t advocate for themselves. I had been working in a hospital about 8 months when he was due for a major surgery. [Looking back – why was he fighting cancer at a rural hospital?] Armed with “knowledge from the inside”, I’m sure the nurses hated me. When things weren’t going right, like the roll-away bed my mom had been promised for the night before his surgery that we were being told wasn’t available now, I knew the magic words: “Ok, then I will just reach out to the Admin On Call”. A rollaway bed magically appeared. Victory - a proud daughter who could use some of her knowledge to do something, ANYthing to help. Again, looking back I don’t think I was there for my mom like she needed. After a long surgery, in which well meaning people were trying to distract me with small talk despite my need for reflective time, we got the devastating news, the cancer was too far along and it was time to talk hospice and the dreaded “quality of life”. There in the hallway I told my mom I was sorry that I wasn’t the kind of daughter that had children early in life so dad could be a grandfather. He would have been an amazing one. She told me to never feel bad about the kind of daughter and woman I am, but this still pains me.

I made the long drive to see him every weekend. I made him a CD of music I thought he would like, but it was about a month too late. He wasn’t aware enough of things by then. Did he wait to be alone with my mom for the final moment? I was in a work meeting about some issue that was being blown out of proportion due to politics. When I got back my boss said my husband had been trying to reach me. And I knew. I guess my mom couldn’t bear it and so called him for him to tell me. It is still hard talking to her sometimes because then I have to think about dad too.

The next year is a blur and the only way to describe the loss of a parent that I have found is that you feel exactly how it feels when you are physically lost. My daily commute was a daily chance to cry. I have a strong interest in end of life, palliative care and hospice topics.  I have a piece brewing in my head about the details of my dad’s last days.

In 2011, my maternal uncle was diagnosed with prostate cancer. That is a slow growing cancer and immediate surgery is not always the recommended course of action. My mom and her sister agonized over the news. The last thing in the world they wanted was for their brother to join them in the “I had cancer club” and they also wanted the cancer out of him. When surgery was scheduled, they put their lives on hold to be there at every step for their big brother.

Throughout my life, whenever the topic of cancer would come up, I would pretty much figure that cancer would be coming for me eventually. So I guess you could stay cancer has been an unwelcome “along for the ride” companion in my life. I pretty much ignored this unwanted passenger it until I started working for a cancer nonprofit. In the interview, they asked about my cancer connection and I talked about my mom and aunt being breast cancer survivors. It didn’t even enter my mind to talk about losing my dad. I had been on the job about a month before I realized that. That is how walled off I keep that part of my life. Getting into the job, I dove into reading all the educational materials provided by the organization. As I was reading, I realized that I was reading everything from the perspective of someone who very likely would be needing all of this information as a patient one day. A moment of clarity. A look into my future.

I’ve known that I wanted to work in nonprofit management since seventh grade when it became clear that a calling to serve for me meant outreach and behind the scenes mission-focused work. Having such clarity at such a young age, what didn’t become clear was where within the nonprofit world I should serve - hence heading right off to grad school after undergrad. I always figured something in social services and ignored healthcare (skipping those sections in my graduate school reading – ha!). Yet, here I am. I worked in a hospital setting for six and a half years and now work for an education and awareness cancer organization. I have found a passion for healthcare and the people in it. I just didn’t want to face up to it and my intimate connection to it early on. So now, I have a daily relationship with cancer instead of pretending it isn’t right there along beside me, in waiting.

Christina Lizaso, could be described by the labels associated with those touched by cancer: co-vivor, previvor, fighter, etc. but by her own description, she is a mom to two sweeties, a wife, and a community engagement professional whose life has been touched - and given purpose - by cancer. Follow her on twitter: @btrfly12

Don't forget to join us on September 11,2013 at 9pm EST for the #gyncsm chat. 

Every Day is a Blessing!