Wednesday, November 27, 2013

Gratitude

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.

Dee
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. 


Dee
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.

video



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. 

Dee
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)
<https://www.psychdata.com/s.asp?SID=156174>https://www.psychdata.com/s.asp?SID=156174
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.
Cesario-Research@hotmail.com<mailto:Cesario-Research@hotmail.com>
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.

Sincerely,

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?

Dee
Every Day is a Blessing!

Monday, November 11, 2013

Scars


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  http://nancyspoint.com/breast-cancer-is-a-string-of-losses/ . 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. 

Dee 
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. http://www.state.nj.us/health/advancedirective/index.shtml

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.

Dee
Every Day is a Blessing!