Unexpected Kindnesses

Today I had two very heart-warming experiences.

I had an appointment to get my hair trimmed- just a little buzz to even out the fuzzies that have started to grow in. I went to Annette at About Faces Hair Salon in Tano Mall on Amboy Avenue. She has been my hairdresser for over 9 years. (Annette, some other beauticians and the owner Sandy did the hair, makeup and nails for my daughter's entire wedding party last year. I must admit we all looked marvelous. ) Annette was nice enough to give me a quick buzz and she asked about my treatments and how I was doing. As I walked up to the desk to pay, Annette leaned over and said "That's OK Dee no need to pay- it took me less than 10 minutes - I'll see you next month for another trim" . She really could have charged me what she would have charged a man but she didn't. Of course my eyes got teary and I gave her a giant hug and said "thanks". That was true kindness.

Then Nick and I headed over to Boro Hardware in Metuchen. This is a small family run local hardware store. My friend Pam had given me a key blank with an end shaped like an awareness ribbon and painted teal. I went up to the counter and asked the man if he could cut the key for me. He said sure, took the blank and cut me a new house key. He came back to the counter handed me the key and said "There you go. ". I asked " What do I owe you? " and he said"Nothing. Have a good day". I thanked him and turned away as my eyes teared up again. Such unexpected kindnesses. Twice in one day. It so moved me that two people could be so kind and touch my life in such a wonderful way.

So if you live in the Edison Metuchen area of NJ, I recommend visiting About Faces Hair Salon and Boro Hardware. They employ truely wonderful, caring individuals. Thanks Annette and Boro Hardware.

LiveSTRONG
Dee
Every Day is a Blessing! I was certainly blessed today.

PARP inhibitor - NIH Phase I trial

I received this info from OCNA for women who have BRACA1 or 2 mutations.

"Ovarian cancer physicians are excited about the potential of this new class of agents in their use for breast and ovarian cancer of mutation carriers and hope that they will have potential for women with sporadic ovarian cancers as well. Dr. Elise Kohn and her colleagues at the National Cancer Institute have an ongoing phase I study using olaparib (AZD2281) in combination with carboplatin recruiting mutation carriers with breast and/or ovarian cancer (contact: 1-888-624-1937). "

I met Dr. Kohn last year and her Ovarian Cancer research is very exciting.

LiveSTRONG

Dee
Every Day is a Blessing!

Unremarkable

Just wanted to share the good news from today's CINJ appointment.

The scans I had earlier this month were "unremarkable" . I know I like to think of myself as a pretty special woman but in this case I don't mind at all being unremarkable. My physical exam was good and my CA-125 was stable.

I am one happy camper.

LiveSTRONG

Dee

Every Day is a Blessing!

Changes

After a year and a half of writing this blog I decided to change the layout. I hope you like it. Like my life I am trying to simplify and this layout is simple.

LiveSTRONG
Dee
Every Day is a Blessing!

Help Pass Johanna's Law 2009

I received this e-mail regarding Johanna's Law 2009. Please write your representative and help raise awareness of Ovarian Cancer.

Johanna's Law 2009 Introduced in the House of Representatives

Johanna's Law Introduced in the U.S. House of Representative Take Action! Ask Your Member of the House of Representatives to Co-Sponsor Johanna’s Law Johanna's Law: The Gynecologic Cancer Education and Awareness Act was signed into law in 2007. The law authorized a national gynecologic cancer awareness campaign over three years. We must now work to reauthorize the program. Ask your Representative to become a co-sponsor for the reauthorization of Johanna's Law: The Gynecologic Cancer Education and Awareness Act. This bill will provide more than $ 16 million in funding for the Centers for Disease Control and Prevention (CDC) to continue work on creating and running an awareness campaign. The enhanced Johanna's Law also calls for collaboration with nonprofit gynecologic cancer organizations and creates a grant program for groups to raise awareness of the signs and symptoms of ovarian cancer.

LiveStrong

Dee
Every Day is a Blessing! Today my blessing was taking a walk with Murphy Dog.

Two Special Dads

There have been two very special Dads in my life Robert, my dad, and Nick, my husband.


I was 5 years old when my mother died and my Dad became a single dad to my two sisters and I ( with help from his sister Dora who came to live with us). The photo is from when he served in the Army during World War II.

My father was the one who kept telling me I could do anything if I worked hard enough at it. He was a plumber who had an 8th grade education. He worked long days to make sure all three of his daughters had college educations. He was behind me 100% when I applied to the engineering school at Rutgers. He had taught me how to weld pipe, change the float on a toilet and install a faucet so he figured I could be an engineer. I was so proud he saw me graduate and get my first job. He passed away in July of 1977 the same month I started work and met my husband. I wish my dad had been alive to meet my husband and kids. I know he would have loved them.

Nick is an awesome husband and wonderful Dad to Terry and Matt. When the kids were growing up he played ball, helped with homework, went to parent-teacher conferences, taught the kids how to drive and was always there to listen. Even now that Terry is married and Matt is in graduate school he still loves to have them visit or visit them and is still doing what dads do best- give advice and help with projects.

Nick has been my life line these past few years, taking me to almost every doctor appointment, chemo treatment, scan and blood test. He has been the one telling me I can do this. And he has helped me to find the strength to get through it not once but twice.



Thanks Dad and Nick for being the best Dads in the world.

LiveStrong

Dee
Every Day is a Blessing.

Taxol Toe

The other day as I put on my sandals I noticed a very wide white area on the big toe of my left foot. Today when I went in to have my port flushed ( yup, I still get a flush every 6-8 weeks) I asked my nurse about my toe. After she looked at my foot she said that the Taxol ( placitaxel) treatments I completed in April had caused my toe problem. She said that many patients on Taxol type chemos experience issues where the nail separates from the nail base.

So how big is this problem? I came home and did a quick Google Search of placitaxel nail effects and sure enough there were a large number of journal articles ( 313,000) some with photos of toes that looked like mine.

Here is a neat word I learned which relates to Taxol and nails:

onycholysis on·y·chol·y·sis (ŏn'ĭ-kŏl'ĭ-sĭs)
n.
The separation or loosening of a fingernail or toenail from its nail bed.

The American Heritage® Stedman's Medical Dictionary
Copyright © 2002, 2001, 1995 by Houghton Mifflin Company. Published by Houghton Mifflin Company.
Cite This Source


LiveSTRONG

Dee
Every Day is a Blessing ! Even if you find your nails are doing funky things!

KOH Supported Research is Published

Selvendiran Karuppaiyah , a Research Fellow at the Davis Heart and Lung Research Institute at The Ohio State University recently published an article on his ovarian cancer research in the International Journal of Cancer.

"Hypoxia induces chemoresistance in ovarian cancer cells by activation of signal transducer and activator of transcription 3" was research supported by a grant Selva received from the Kaleidoscope of Hope Foundation.

LiveStrong

Dee
Every Day is a Blessing!

Oncology Social Workers - the Unsung Heroes of a Cancer Survivor's Life

There is another group of people who play a crucial role in the life of a cancer survivor- the oncology social worker. This is dedicated to all social workers but especially for CINJ's Gynecological Cancer social worker, Julie.


Thanks for listening.
for asking those tough questions that help us make decisions;
for having that uncanny ability to know just what to say when the going gets tough for us.

Thanks for helping us adjust to our "new normal".

Thanks for answering all those e-mails and phone calls;
for calling or visiting us when we are in the hospital;
for being there (with the box of tissues) when we are first diagnosed;
for being the shoulder to cry on when we have to have another surgery, start chemo all over again or are waiting for test results.

Thanks for finding us resources when we don't know where to turn.
Thanks for making us laugh.
Thanks for making the journey a little bit easier.



LiveSTRONG

Dee
Every Day is a Blessing !

A Fun Coastal Jersey Parrot Head Fundraiser

This afternoon, Nick and I drove down to Doolan's in Spring Lake, NJ for the Coastal Jersey Parrot Head "Colors of Cancer " Feeding Frenzy. My friend and fellow survivor Pam is Secretary of this Club. In addition to being Jimmy Buffet fans the Parrot Heads support non-profit organizations in their community. Today's event was benefiting the Cancer Institute of NJ (CINJ). Last year the Parrot Heads raised $7,500 for CINJ.

What a fun event! We sat a Pam's table with my friends and fellow survivors from CINJ's gynecological cancer support group. One of my doctors and our social worker joined us. They had a DJ plus a wonderful band, Jimmy and the Parrots, a face painter and good food. There was a silent auction & a live auction. Nick and I were won the framed Giants autographed poster.

A cartoon in the program read"Cancer took my ovaries and chemo took my hair but I'm alive that's all that counts, I'm bald and I don't care!"
How true!

Thanks Pam and all the Parrot Heads for your support of the researchers of CINJ.

Livestrong

Dee
Every Day is a Blessing!

Save the Dates- Ovarian Cancer Awareness Walks in NJ

Kaleidoscope of Hope Foundation will be holding 3 walkathons to raise funds for research and awareness of ovarian cancer.

September 12,2009
Morristown- Loantaka Brook Reservation

September 20
Lyndhurst - Richard De Korte Park

September 26
Avon-by-the-Sea - Boardwalk


Northern NJ NOCC and West Orange will be hosting the Mayor' 5 K Walk to Break the Silence in memory of Lisa Neibart. It will be held on October 18, 2009 at the West Orange Town Hall.

So mark your calendar and as more info and registration materials are available I will give an update.

LiveStrong
Dee
Every Day is a Blessing!

Somerset Patriot Baseball Team hosting an Evening for Ovarian Cancer Awareness

The Northern NJ Chapter of the National Ovarian Cancer Coalition and the Somerset Patriots Baseball Team invites you to an evening for Ovarian Cancer Awareness.

Somerset Patriots vs York Revolution
August 1, 2009
TD Bank Ball Park
1 Patriots Park , Bridgewater ,NJ 08807
Gates Open @ 6:05pm for pre-game activities
Game Time 7:05pm
Tickets $7.00 ( Regular price $9.00) includes a 10% merchandise coupon for the Patriots Gift Shop

For Tickets and Information please call:

908-755-6276 or 908-754-2371

Please come out,enjoy an evening of baseball and help raise awareness of Ovarian Cancer.


Livestrong

Dee

Every Day is a Blessing!

CINJ's Cancer Survivor Day

Today was National Cancer Survivors Day. CINJ had a fun celebration at the Hyatt Regency Hotel in New Brunswick. The celebration was named "Welcome Aboard our SurvivorSHIP".
The "cruise director" Eddie kept people on their toes by announcing the different activities- hand massages, make-up tips, line dancing, and stress relief activities. In the atrium, sharing tables for the Center for Cancer Survivorship at CINJ, the Life program, the CINJ library, the Bridge program ,and the Social Work department provided excellent information. There were cookbooks by the CINJ nurses and special greeting cards for sale. The cards were designed by my friend Sandy( see the website below).

We entered the ball room and by each place setting was a very soft plastic CINJ ship ( see photo above.) I was asked to start off the program by calling a game of Bingo- a very traditional cruise game. Dr Robert DiPaola welcomed the group and Eric Perakslis, Chair of the Survivors Advisory Board discussed the new center. Guest speaker , Conor Cunneen talked about the importance of "gab"- goals, attitude and behavior - on our cancer journey.

Nick and I sat with the women of my gynecological cancer support group, their husbands/ partners and Julie a friend and social worker who facilitates our group. Our support group began in May of 2007. We have laughed together, cheered each other on, offered each other advice and cried together when one of our own - Sharon lost her battle with this disease. There was a photographer taking photos of survivors and their families holding a " Celebration of Life" life preserver. Our group could not pass up the opportunity to get a photo together. When we picked up the photos at the end of the event we laughed to see us pictured on a beach with palm trees in the background. Very Neat!

By the way, I decided to go to the event without a scarf, hat or wig. The hair is growing in. :o)

Livestrong
Dee

Every Day is a Blessing!

TWC-CNJ Launches Cancer Transitions - Moving Beyond Treatment " program at Survivors Day Celebration

Last night Nick and I spent time at the Bridgewater Manor ( the location of my daughter Theresa's wedding reception last year.) . It was the site of the Wellness Community of Central NJ's Survivor's Day Celebration and marked the Launch of the "Cancer Transitions - Moving Beyond Treatment" program.

"Cancer Transitions" is a free 2 1/2 hour , six-week program designed to help cancer survivors make the transition from active treatment to post-treatment care. The Wellness Community has worked closely with the Lance Armstrong Foundation for the last 3 years to create, pilot and implement this program. Sanofi-aventis US will be providing funding for the program throughout the United States. It just so happens that sanofi-aventis is located just down the road (Route 202-206) from the Wellness Community of Central NJ. We all got a taste of the program through a short introduction by four speakers.

The night also included a keynote speech by Audrey Vitolins who spoke on "Celebrating the Beat of Significance"; Mark Wood and the "Healing Power of Drums"( I love drumming) and the awarding of the Spirit of Courage Award to Deborah Rochon and Spirit of Caring Award to Florence Kelly. A number of other community groups such as NOCC, ACS, Cancer Hope Network, etc. provided information during the registration period. The night concluded with the distribution of Red roses to survivors and yellow roses to caregivers.

I have participated in Wellness Community- Central NJ gynecological cancer networking group for over 2 years now. I've also attended a number of other workshops and classes. Walking in the door of that small white building in Plukemin is like going in to your best friend's home. You always feel welcome and comfortable enough to share your joys, your concerns and your pains. Thank you to Eunice, Ellen, Karen, Patty and all your volunteers for giving us a place to do just that.

Livestrong

Dee

Every Day is a Blessing!

I Am Quoted in the Home News

Last week, I was interviewed for the article "Cancer Institute Researchers Examine Needs of Cancer Survivors" in the Home News and Tribune. Dr Hudson is doing great work at CINJ. The recently established Center for Cancer Survivorship at the Cancer Institute of NJ provides clinical( adult and pediatric) , educational ,research and advocacy programs that address the unique experiences of a cancer survivor. I will write next week about this Sunday's Survivor's Day program and future activities of CCS at CINJ.

A special Thank You to Jeff Weber for bringing survivors issues to light.

LiveSTRONG

Dee
Everyday is a Blessing!

ASCO Meeting Abstracts

I've been really busy but wanted to share the ASCO ( American society of Clinical Oncologists) website with the abstracts for the 2009 conference in Orlando , Florida. There are a few interesting articles on CA-125, Avastin and results of other clinical trials.

Click on this page and then scroll down to the Ovarian Cancer link on the bottom left.

Livestrong

Dee
Every Day is a Blessing!