Friday, December 31, 2010

Starting and Ending in Kansas

2010 Highlights
Kansas trip and Andy's deployment ,
Packing up a home,
Celebrating Matt's Graduation from VT with his Masters degree,
Buying a new home,
Traveling to DisneyWorld with Theresa ,
Celebrating my 5th Cancerversary,
Selling our old home,
Welcoming Amber , the All- American dog to our home,
Celebrating Thanksgiving in our new home
Visiting DisneyWorld during a cold Florida December ,
Celebrating Christmas with Matt in our new home,
Finishing up the year in Kansas - Andy is Home !

A year of port flushes, CA-125's , CT scans , gyn-onc appointments that all confirm I am still in remission. Blessed for 365 days. Toasting the future.

Every Day is a Blessing.

Tuesday, December 28, 2010

Closing a Door

December 31st marks the end of my three year term on the Board of Directors of the Kaleidoscope of Hope Foundation. It has been my pleasure and an honor to serve with so many other women and men whose priority is to fund ovarian cancer research and raise awareness of the disease. I will continue to support the mission of KOH and a number of events not as a Board member but rather as a volunteer.

Since KOH's mission is to fund research I have had the opportunity to meet researchers whose work is cutting edge and who are dedicated to finding a cure. I shared my story with many of them so that they knew the face of the disease. I had a hard time explaining to them just how appreciative I am of their efforts. I even had the opportunity to tour one researcher's lab at The Ohio State University . And I've had the chance to work with the wonderful doctors on our Scientific Advisory Committee to draft this year's request for grants proposal.

I have enjoyed meeting women from other ovarian cancer groups who guide their groups in efforts to raise funds for research, support women diagnosed with the disease and raise awareness. I hope that the consortium that has been formed will continue to prosper and find its collective voice.

One of my favorite activities as a Board member was working with our web designer to update the KOH website. I learned about design, layout , and how to edit the site. But the best part of being a Board member has been the opportunity to meet other women diagnosed with the disease and family members of those who lost their lives to ovarian cancer. I met them at the Gala, at the walks , at the Passing of the Torch and at awareness events. We are fighting together to make teal the new pink, to have primary care physicians listen to our symptoms and diagnose us quicker and to work closely with our gynecologic-oncologists to find the best treatment for each one of us. Many of these women have become my friends.

I am not sure what lies ahead in 2011 but as the saying goes "as one door closes another opens". So I am looking forward to the next door that will open.

Every Day is a Blessing ! Indeed.
PS Thanks Matt for taking such a beautiful photo of a door in Riva.

Monday, December 27, 2010

Christmas Weekend

What a wonderful and white Christmas weekend.

We started out with a Christmas Eve celebration at our friend's Ron and Elaine. For 20+ years we used to live on the same block in Edison. Now we live about 1 mile and a half from each other in neighboring towns and have been able to continue the tradition of sharing Christmas Eve with each other. Linda and Vinnie who moved from our block years ago were also able to join the festivities driving up from Maryland with their son. Elaine's brother and his wife also joined us. I learned for the first time that he is cancer survivor. His wife compared notes with my husband about being a caregiver and getting us to and at times talking us into continuing treatments. He and I compared the neuropathy we have in our feet. (I find it interesting that even meeting people with different cancers there is a special bond that makes you want to talk about our shared experiences. ) He is blessed with 2 years of survivorship. We ate delicious food and played fun games. The 5 year old twins were the real winners in the Christmas Memory Game.

On Christmas morning, Nick, Matt and I went to mass at St Anthony's then came home and with the fire going in the fireplace opened presents. I always wanted to be able to do that and in my new home I finally can. Later in the afternoon we ate dinner. Being of Italian descent, we needed the beginning pasta dish- ravioli then ham, sweet potatoes, & creme spinach. We let that settle and then went to see my Aunt for dessert. My sister and her family were there and my cousin joined us a bit later. From pears with honey , to an Egyptian coconut cake everything was delicious. Except the chocolate pecan pie I made - not good at all. Next year I'll go back to the Kentucky pecan pie recipe.

On Sunday after Mass we stopped for some things at the food store and hunkered down for the blizzard. We had about 20 inches here and the wind blew drifts even higher. It was so bad even the mail didn't get delivered today.

Now I'm just wondering how long until I see the wooden reindeer I have in the front yard.

Every Day is a Blessing!

Wednesday, December 22, 2010

Catching up

The last few weeks have been very hectic. Sorry for not updating more frequently.

We went to Disney World with our good friends, Linda and Vinnie. The weather was very cool, reaching a low of 32 degrees Fahrenheit one night. I think it was warmer in Maine than it was in Florida. But the weather did not stop us from seeing the Parks. We bundled up like we were going to a football game to watch the moving performance of the Candlelight Processional narrated by Susan Lucci. The light spectacular at Disney Hollywood Studios was well worth braving the chilly weather to see. There was no swimming - even in the heated pool - which was right outside our door.

It is always good when we get a chance to stop in Virginia to see Matt. While there we found the vendor we purchased a small wooden deer from a few years ago. So we decided to purchase another deer - this one a bit taller . Both deer look great on our front lawn.

We finished puppy kindergarten classes at Golden Grange Kennels. We missed one class but Amber got to practice a bit while we were away since we boarded her with Joe at Golden Grange. Amber did very well with the first basic set of commands - look, sit ,down,stay ,come . We still need to work on Leave-it. Amber seems to love picking up everything in her mouth.

I've missed the November Girl's Night Out so I was really looking forward to getting together with my girl friends for December. We all had children in the same class at St Francis School and have been getting together monthly for years. This year we shared a Christmas meal at Nancy's home. It was wonderful and really is what the Season is all about.

I had my gyn-onc visit and port flush last week. The flush went well and the doctor visit even better. I am good for another three months. Hurrah! A great holiday gift.

I am thrilled that Matt is home for Christmas. I really enjoyed having a few of Matt's Tech friends spent a few days with us.

The rest of the time I have been decorating the house inside and out, writing out Christmas cards, shopping for myself, making my visits to see Aunt Dora, calls for Cancer Hope Network and began working with a committee at CINJ on Survivors Day 2011 in June.

Lastly, I have been winding down my term on the Board of the Kaleidoscope of Hope Foundation. It is one of the best Ovarian Cancer organizations in NJ and supports cutting edge research. I will still advocate for Ovarian Cancer Survivors but will not be involved in the day-to-day activities of the foundation.

That about sums it up. On to cookie baking and gift wrapping and the real Reason for the Season.

Every Day is a Blessing!

Monday, December 13, 2010

He'll be Home For Christmas

This version of I'll be Home for Christmas has always been a favorite of mine. This year it takes on special meaning.

I am thrilled that my son-in-law who has been deployed to Iraq since January of this year is coming home this evening !

Welcome Home Andy ! We missed you.

Every Day is a Blessing ! Having Andy back home is a real blessing.

Wednesday, December 8, 2010

Thank you Elizabeth

In 2006, I heard Elizabeth Edwards speak at the Livestrong Survivors Summit in Austin, Texas. It was a very moving speech. Elizabeth could have chosen to fight her fight in private but instead like so many other cancer survivors she spoke up and talked about what survivors need. She spoke about health care reform and she told her story. She was there for so many breast cancer survivors. She made a difference.

Thank you Elizabeth for being there for others. Rest in Peace.

Every Day is a Blessing!

Friday, December 3, 2010

Jewlery Sale Supporting OC Research at Penn

Click on the image above to enlarge.

Help support the ovarian cancer research of Dr Coukos at Penn Medicine by buying a beautiful piece of jewelry on Saturday December 4th from 7pm - 10pm at Billig Jewelers ( 330 Route 73 South , Marlton, NJ). For more info contact Laura Ferraiolo at 215-746-2948.

Isn't that Heart beautiful!

Every Day is a Blessing!

Thursday, December 2, 2010

One Daughter's Thoughts

I follow a number of blogs written by young women with ovarian cancer or ones with a mother who had /has ovarian cancer. Sami writes a blog called " Dear Mom , Can you get letters in heaven?". Sami's mom passed away 3 years ago from ovarian cancer and through her blog Sami continues to write her letters .

Having lost a mother at a young age I was very moved when I read Sami's blog entry.

Three Years, No Tears (Yet!)

I will not even try to summarize what she wrote - please give it a read.
Thank you Sami for sharing your thoughts and feelings so eloquently.

Every Day is a Blessing! I am blessed by the people I have met who have been touched by this disease.

Tuesday, November 30, 2010

Always There for Me

Yesterday I took a ride up to the Wellness Community Central Jersey ( TWC) to visit with Ellen Levine, the program director. Ellen and I go way back. Well, way back when it comes to my cancer journey. Ellen used to be the Director of Social Work at CINJ where I was treated.

I remember the first time we met. Patients in treatment at CINJ can attend programs offered by different departments at CINJ that educate and support cancer survivors. So one day in November of 2005 my IV pole (chemo attached) and I took the elevator up to the 2nd floor for a workshop on how to get through the holidays when you have cancer and are in treatment. Ellen ran the program that day and talked about food, interacting with family and prepping for the holidays. Instead of feeling guilty about not being able to do the things we usually do at the holidays she recommended starting new traditions. That is just what I needed to hear since I was the type of person who always went a little over the top at the holidays- decorating, shopping, coooking etc.

A while later Ellen took over as program director at the Wellness Community in Pluckemin. I started to attend the Gynecological Cancer Networking Group as well as some of the other wonderful programs they offer. After returning from the Livestrong Survivors Summit in 2006 I approached Ellen about ideas I had. She guided me on how to approach CINJ to start a support group there and also reigned me in so that I would not head off in too many different directions and loose site of my goal of raising awareness of Ovarian Cancer. After I attended Livestrong day in DC in 2007 , Ellen and TWC willingly hosted a workshop"Advocacy 101" where Betty Gallo and I talked about how cancer survivors can advocate at the state and national level.

Yesterday we spent time just catching up - talking about how we were feeling, how our families were and my new home. I was glad too that Karen a TWC social worker who runs the Gynecologic Cancer Networking Group could join us for our chat since I haven't been to group in many months. I shared with Ellen and Karen how I was feeling about my role as a cancer advocate and where I want to concentrate my efforts as an ovarian cancer advocate. I love sharing ideas and plans with Ellen and Karen . They listen carefully and then provide advice that is right on target for me.

TWC is in an old house so when I was done speaking to Ellen and Karen I went up the center wooden stairs to see Eunice, Executive Director and Patty, Director of Marketing and Community Outreach.

TWC building is a warm comfortable place to visit but the people inside make you feel welcome at any time - making you a cup of tea - just like old friends would. Ellen , Karen , Eunice and Patty have always been there for me.

Every Day is a Blessing !

Wednesday, November 24, 2010

I am Thankful for...

I am thankful for...
my husband. You are my rock, best friend and a wonderful caregiver.
I am thankful for...
my daughter. Your phone calls and google chats really make me smile. I know Andy's deployment has not been easy. You are a strong Army Wife;
I am thankful for...
my son. I can't tell you how much having you home for Thanksgiving means to me. You have shown me a strength and commitment that makes me proud.
I am thankful for...
my son-in-law. You gave up so much to keep us safe here at home. Thank you. Can't wait for you to come home.
I am thankful for...
family members and friends too numerous to mention by name. Your love and support is a blessing to me.
I am thankful ...
for my fellow cancer survivors. You inspire me and make this journey a bit easier.
I am thankful for...
my new puppy. Amber and her unconditional love. You are one spunky girl.
I am thankful for...
the doctors, nurses and social workers at CINJ. I would not be writing this if not for the excellent care you provided to me these past 5 years.

May everyone have a very Happy Thanksgiving!

Every Day is a Blessing! I thank God for all the Blessings in my life.

Friday, November 19, 2010

Looking forward to many more years

I'm going to keep this one short. Today is my 32nd wedding anniversary. I love my husband Nick more than words can express. He has been my friend, my soul-mate and these past five years my caregiver. I am positive his love and support has made all the difference in the world in how I have been able to survivor my OC diagnosis.

I look forward to 32 more years.

Every Day is a Blessing!

Thursday, November 18, 2010

Two Months...

is my limit. Two months is how long I can go without seeing my children in person, see their face and give them a big hug. I use google chat but seeing, hearing and actually being in the same room with my kids is something else all together.

At the end of October it was two months since I had seen my son. So Nick , Amber (our new puppy ) and I drove down to Virginia to see him. Did we really have to go? Probably not but I just really needed to see him. I came back so happy to have had time to have dinner, go shopping , play with his dog Murphy and just plain talk. Yes we talked- about the article he was writing, his part-time job, PhD programs and the crew team he coaches. I really love talking about crew. It is something we have in common and it brings back such great memories of when I was a coxswain for the Rutgers lightweight crew team.

On November 1st it was 2 months since I saw my daughter. Lucky for me I had made a reservation to fly out for a visit. This past Sunday I flew out to Kansas to visit her and her pugnacious pug Silvio. I made sure I was up early so we could eat breakfast before she left for work. We ate dinner together, made cookies, brownies and talked. Yup there it is again- all we did was talk. Well, we watched TV too, Dancing with the Stars and Gilmore Girls reruns. That reminded me of when we used to watch 7th Heaven and Felicity together. The added bonus was that I also got to talk to her husband, Andy, for the first time in 4 months. Andy is deployed to Iraq. I am so proud of him and her for "holding down the fort" here at home.

I don't really know if other mothers have this urgent need to visit their adult children every few months when they live far away. But, I sure do. I hope I can continue my 2 month visiting for many years to come.

Every Day is a Blessing!

Monday, November 15, 2010

OC risk and hormone replacement

I learned about this information in a pretty circuitous way. A friend, Sandy posted a link on her blog to an entry in the blog written by Margaret Polaneczky, MD The Blog That Ate Manhattan titled- "HRT Worries- This Time Its Ovarian Cancer again..." which peaked my interest in reading more about the study and effects of hormone replacement on the risk of ovarian cancer.

To summarize , at the recent American Association for Cancer Research (AACR) International Conference on Frontiers in Cancer Prevention research meeting in Philadelphia an interesting poster on hormone replacement was presented based on the results from the European Prospective Investigation in Cancer and Nutrition Project (EPIC). Key findings to date of EPIC can be found here. The study was based on over 125,000 women and results were presented in the poster session named "Menopausal hormone therapy and risk of ovarian cancer in the European Prospective Investigation into Cancer and Nutrition." Click here and scroll down read abstract #B101.The conclusion was "Our results are compatible with an increased risk of ovarian cancer for HT use, especially for women using estrogen-only therapy".

Dr. Polaneczky does an excellent job in her entry to analyze the HRT study in laywomen's terms. I strongly suggest you jump over to her blog and read it. Thanks Dr P.

Small amounts of things can help.Too much of things that can help can cause problems. So things should be done in moderation- including the use of hormone replacement therapies.

Every Day is a Blessing!Thanks Dr P.

Tuesday, November 9, 2010

Did I Really Forget?

I know this great group of women on Facebook. They are ovarian or gynecologic cancer survivors from the US, UK and Canada. We share a lot with each other and not just about this crazy cancer journey.

This morning when I checked in with the group, one of the ladies was saying how she had blood work done and has to wait till Nov 27th for the results. I thought to myself " Wow that's a long time to wait." I even commented on the page how I hate having to wait for test results. And then it dawned on me that I never got my CA-125 result when I had my port flush done in October. I can't believe that I actually forgot to call and get the result. And the other amazing thing is that I haven't worry about it either.

I got off the computer , called the nurse help line at my cancer center and left a message telling them that it was not am emergency but asked for them to call back my cell with the results. Sure enough a short time later the nurse called and said my CA-125 was 11.0. GREAT! My results have been between 10.2 and 11.8 since last August so I am really happy with the 11.0. Well within the range of error for the test.

I'm still amazed that I made it almost a month without needing those results. I think life has just been too darn interesting to worry about what my test results are. Now I get to wait until December for my doctor visit for the next official "All Clear!".

Every Day is a Blessing ! I am blessed by my Facebook survivors group and hope one day to actually meet the UK contingent in person.

Saturday, November 6, 2010

Change- Change of Seasons, Change the Time, Change in Me

One thing about life is that there will always be change. Sometimes the change is slow. Sometimes it is so quick I want to shout out- "Slow Down".

I love the fall when the leaves change, the weather changes and we change the clock. Change is ok I just like it better when I'm the one who wants to change something. Don't we all.

Cancer caused a big change in my life. I was diagnosed - BAM - my life changed in an instant. Surgery and treatment happened but changing back to being free of disease well that went pretty slowly for me. I don't think I ever changed back to normal- at least the normal I had before I was diagnosed. I felt good but still had those side effects plus I felt I looked at things differently. No not rose-colored glasses but teal colored ones. I needed to make a difference in the world of ovarian cancer.

I was at my "new normal" for two and a half years and BAM I recurred. Another change - surgery and treatment and part way through a change in treatment ( you never can tell what changes this cancer stuff will cause!)

So I have spent the past year and a half getting back to my "new,new" normal. My feet still bother me and chemo-brain has really changed my thought process. I know what I want to say but I can't find the word or use the wrong word and don't even realize it. At a meeting this week I used bulletin board when I meant billboard. Yeah , I know both are boards but still it is a bit disconcerting.

My husband and I made a few good changes this year so far. We changed to a new home which now includes a new puppy. ( The photo above was taken 3 blocks from my new home.) I'm ready for some other changes too. I'll write about those soon.

Every Day is a Blessing! I am blessed by family and friends that did not change but rather stayed as my rocks on the journey.

Sunday, October 31, 2010

Clinical Trial Day - November 6th

There are a lot of different reasons to enter a clinical trial. Most people think that it is when there are no other treatment options for you.Or think that trials are only for diseases for ailments that can cause death- like cancer. Sure there are clinical trials for those but there are actually many clinical trials that are studying ways to prevent diseases. There are others to ease the side effects of injuries and other treatments.

You can learn more about clinical trials by attending a course / webinar on November 6th .
See the graphic above for more information.

Every Day is a Blessing!

Nov 13th - OCRF Symposium

Live in the New York City Area? Want to learn more about ovarian cancer ? Be sure to attend the OCRF Research Symposium.
Here is info from the OCRF website.
Ovarian Cancer Research Fund Scientific Research Symposium
Bringing You The Science Of Hope

Please join us Saturday, November 13, 2010
9:00am - 1:00pm * Free and open to the public
Florence Gould Hall * 55 East 59th Street, New York, NY
(between Park and Madison)

Reservations recommended. RSVP at 212-268-1002 or

Join the program live via webcast here

Moderator: Peter Dottino, M.D.
Vice President, OCRF Board of Directors;
Assoc. Clinical Professor Obstetrics, Gynecology and Reproductive Science, Mt. Sinai Medical Center

Special Presenter: Carmel Cohen, M.D.
Co-Chairman/Scientific Director, OCRF Board of Directors;
Vice-Chairman, OCRF Scientific Advisory Committee;
Professor of Obstetrics and Gynecology, Mt. Sinai Medical Center

What's New in Screening and Early Detection?
Barbara A. Goff, M.D.
Professor & Directors, Gynecologic Oncology; University of Washington

A Survivor's Story: Diagnosis and Treatment
Marie Sanford, M.D.
Pediatrician, Westside Pediatrics

New Treatments in Ovarian Cancer
Molly Brewer, D.V.M., M.D., M.S.
OCRF Scientific Advisory Committee;
Assoc. Professor, Division of Gynecologic Oncology, Carol and Ray Neag Cancer Center, University of Connecticut

A Survivor's Story: Clinical Trials
Gina DePalma
James Beard Award-winning chef and cookbook author

From Bench to Bedside: Discovery and the Promise of Research
Michael V. Seiden, M.D., Ph.D.
OCRF Scientific Advisory Committee;
President and CEO, Fox Chase Cancer Center

Every Day is a Blessing!
PS Happy Halloween everyone!

Friday, October 29, 2010

People come into your life for a reason, a season, or a lifetime.

I have put off writing this post because I couldn't seem to find the right words.

Denise joined the Gynecological Cancer Support Group at CINJ and quickly became a friend. On Tuesday, I received an e-mail from her daughter,Kofi. I never met Denise's daughter in person. But I felt I knew her from how warmly she spoke of her and the photos Denise shared of her when Kofi's daughter was born. It was not the e-mail I wanted to read. "On October 24, 2010 at 12:45, angels descended from heaven and brought my mother Denise home for her eternal rest. "

That line took my breath away. I kept thinking "No, not Denise too". Loosing friends to cancer is becoming more and more difficult for me to handle.

Today I thought of the essay that begins "People come into your life for a reason, a season, or a lifetime. ". Denise came in to my life for a reason. There have been very few people these past few years who I could frankly speak to about faith in God and its impact on how we live as ovarian cancer survivors with the constant threat of a recurrence . Denise was one of those people. She knew scripture better than I did but she made me feel comfortable enough to easily share my feelings and thoughts about God, my faith and how the love of God can make this journey easier. As I looked back through e-mails I found one from March where I wrote to Denise- "I just knew He had you walk into my life for a reason. " Amen.

Thank you Denise for all your support. I will miss you.

Every Day is a Blessing ! Thank you God for the chance you gave me to grow in faith through my friendship with Denise.

Wednesday, October 27, 2010

Dance for a Cure

Do you love the ballroom dancing segment on Dancing with the Stars? Then you need to see the marvelous dancing of Evgeny Dyanchenko at the The Teal Tea Foundation's Dance for a Cure event on Sunday, November 7th. Dyanchenko was part of the "Dancing With the Stars" twenty-five city tour as well as a 4th place National Professional Rhythm Champion. The Teal Tea Foundation raises funds for the Cancer Institute of NJ and to increase awareness of ovarian cancer.
The event takes place from 1-5pm at the Nottingham Ballroom in Hamilton, NJ. The $50 tickets include a delicious buffet and dancing ,of course.

For tickets and more information please see

It should be a fun afternoon!
Every Day is a Blessing!

Sunday, October 24, 2010

Flapjacks for Teal

I like Applebees food - ribs, burgers and great hot wings for tailgating, etc. We usually end up at the restaurant around 6pm. This morning Nick and I took a short ride to the Applebees in Hamilton.( I love getting to know places around my new home.) There we were greeted by the friendly smile of Karen Neuls, founder of Teal Wings of Hope Foundation. I met Karen at the Teal Wings of Hope Walk which I wrote about in September.

This morning Applebee's was serving Flapjacks and Sausage to help support the Foundation. There were many familiar faces from the walk in September and the servers - sorority sisters - were very pleasant as they brought out the coffee, juice, sausage and flapjacks.

It was great to share good food for a good cause!

Every Day is a Blessing!

Thursday, October 21, 2010

Women of Teal and a Tough Choice

People diagnosed with cancer make many tough decisions . Deciding on a doctor, biopsy decisions, surgery decisions, treatment decisions, whether to work or not during treatment, who they tell about their diagnosis, and countless more. But the most difficult of all is the decision faced when there are no decisions left to make. In the past two weeks , two friends have made the decision to enter hospice.

CJ lives in California . I have been following her blog for years and we have kept in touch through her blog and other social networks. Her blog, Shopping Kharma, is difficult at times to read but she tells it like it is in. She is one tough lady who continues to fight.
In September this year I wrote a blog entry about my friend Courtney. She does not fit into the age bracket of a woman diagnosed with ovarian cancer. I think we hit it off so well when we first met in Austin in 2006 was because she reminded me of my daughter ( who is the same age as Courtney ) and her friends. She too is now in hospice in Ohio. Courtney has truly lived stong these past five years. Those of you who know Courtney from any of the LiveSTRONG Summits please share a memory of a fun time ( like the night at the Zoo ) with Courtney on Facebook at Courts Page.

I wish I was closer so I could give my two friends a hug.

Every Day is a Blessing!

Thursday, October 14, 2010

Making the First Cut

I am so pleased that CINJ/ Robert Wood Johnson Medical School has qualified to be a recipient of a LiveStrong Community Impact Project this year.

This year votes from the public will determine which organizations receive the Impact Grants. There are three types of programs to be funded- Creative Center :Arts in Healthcare, Supersibs, and Cancer Transitions. CINJ has applied for a Creative Center :Arts in Healthcare Grant.From their application-

"CINJ is a robust clinical enterprise with over 83,000 patient visits in 2009. For our 2010 Survivors Day Celebration, Robin Glazer, Director of the Creative Center: Arts in Healthcare was the key-note speaker at the Cancer Institute of New Jersey (CINJ). Attendees of this program (patients, family members and health care providers) loved the Creative Center's approach and philosophy. Several attendees contacted our office and the Creative Center's to learn more about this program. Promoting healing experiences is crucial, and with an Artist in Residence Program we will have the opportunity to institutionalize this value into our existing operations."

Now it is up to us - patients, caregivers and supporters of CINJ to vote so that the Creative Center :Arts in Healthcare program can be implemented at CINJ. Ok I am a bit biased but having taken a short art therapy program a few years ago I think other patients at CINJ would benefit from taking part.
Please click on this link to vote every day:

Every Day is a Blessing.

Tuesday, October 12, 2010

Lots of Zeal

Sunday October 10th was the 10th Anniversary Celebration of the Kaleidoscope of Hope Foundation. The Foundation raises funds for research and awareness for ovarian cancer. I have served on the Board since 2008.

The Zeal for Teal Brunch was held at the Hyatt Regency in New Brunswick, NJ. KOH supporters , doctors, nurses , social workers and survivors gathered to celebrate the work KOH has done to raise awareness and almost $ 2 million raised for research in its first ten years.

Jenny Allen , survivor, author and performer of I Got Sick then I Got Better (and someone I have written about before) MC'd the event. The Foundation awarded Scope of Excellence Awards to physicians who concentrate on treating ovarian cancer patients. The honorees were:
George Coukos, MD, PhD, Director, Ovarian Cancer Research Center, University of Pennylvania Abramson Cancer Center, Lorna Rodriguez, MD, PhD, Chief of Gynecologic Oncology, The Cancer Institute of New Jersey, Brian Slomovitz, MD, Gynecologist Oncologist, Carol G. Simon Cancer Center, Daniel H. Smith, MD, Gynecologist Oncologist, Holy Name Hospital, Mario M. Leitao, Jr., MD, FACOG, Memorial Sloan-Kettering Cancer Center and Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, The Cancer Institute of New Jersey.

Dr Rodriguez and Dr Gibbon are my CINJ doctors. Their nurses as well as a number of other oncology nurses and social workers were there too.

It was a wonderful way to honor healthcare providers who do so much for women with ovarian cancer.

Every Day is a Blessing! The doctors and nurses who treat OC patients are a blessing to all.

Tuesday, October 5, 2010


I have heard people call their chemo many different names (usually not nice ones) but never elixir. Well, that was until yesterday when I met Meg McQuarrie and heard about her brother Kevin. Kevin wanted a more positive name for the chemotherapy he needed so he asked his family , friends, doctors and nurses to call his chemo - ELIXIR. While he was in treatment he tried to bring things along that would make him feel comfortable - a DVD player, CDs, a blanket. His friends and family would offer him a massage and make him laugh.

Although Kevin passed away in 2003 his family and friends wanted to continue to provide items of comfort and support to other cancer patients. They formed a non-profit named ELIXIR FUND. Meg is the executive director. The Fund provides hospitals, doctors, nurses and cancer treatment centers with amenities and extras that they may not be able to provide for their patients. They have decorated waiting rooms, installed TVs and offered massage and makeovers to patients. I was pleased to know that the DVD players at CINJ, were I was treated, were provided by the Elixir Fund.

The Fund looks to provide national and local support for cancer patients and caregivers as well. They have partnered with a number of services for cancer patients in NJ such as meals, yoga, mediation & facials. They will also work with patients and caregivers to find a needed service or support. Click here to see what is available in NJ. If you have friends in California, the Fund has partners that provide similar services there too. Be sure to watch the video on their website to learn more about this wonderful organization.

The Elixir Fund is Life, Love, Light and Healing! Thank you Meg for making a cancer patient's journey a bit more comfortable.

Every Day is a Blessing!

Monday, October 4, 2010

A Pink Ribbon in my Heart

It was raining hard all day in NJ on Friday, October 1st the remnants of Hurricane Nicole. There were flooded roadways throughout the state which made my trip to Morristown take an extra half hour. And the rain meant moving the Passing of the Torch event from the outside Greek Theater at the College of St. Elizabeth to Dolan Hall inside the Annunciation Center. What the rain did not dampen was the spirit of collaboration and support of those present to pass the flame of ovarian cancer awareness in September to October's breast cancer awareness.

The Passing of the Torch campaign is a collaboration of the Kaleidoscope of Hope Foundation and FORCE - Facing our Risks of Cancer Empowered. It is a way to highlight the hereditary link between breast and ovarian cancer in women who have a BRCA1 &BRCA2 mutation, honors cancer survivors and those at risk and remembers those who lost their lives to cancer.

Two speakers told their moving stories of survivorship while an oncology nurse gave an informative talk regarding BRCA1&2 mutations and hereditary risk management. (Check out the FORCE website for info about hereditary cancers. ) Those present bought luminaries and as the clouds lifted and the sun set College of St. Elizabeth volunteers lit the candles. Other luminaries were purchased online to honor survivors of breast and ovarian cancer. Check out the park here.

At the end of the event I took a walk outside and saw the luminary I purchased in memory of my sister Roberta. As much as I am a women of teal, I will forever have a pink ribbon in my heart.

Every Day is a Blessing!

Thursday, September 30, 2010

What a Month!

What a month September 2010 has been.

TEAL was everywhere.
  • There were articles about Ovarian Cancer symptoms in the local newspaper & in national magazines.
  • There were interviews with survivors on national TV.
  • There were Teal Ribbons all over the state.
  • NOCC had a September Speaks program with a speaker talking about ovarian cancer each day of the month.
  • OCNA started the Teal Journal.
  • The House passed Johanna's Law . Now we are waiting on the Senate. Thanks Senator Lautenberg and Senator Menendez for co-sponsoring the bill in the Senate.

What a month September has been for me.
  • I spoke to the walkers at the Teal Wings of Hope Walk in Hamilton , NJ.
  • I helped hang Teal ribbons in Edison and at CINJ.
  • I walked to raise funds for The Cancer Institute of NJ in honor of my wonderful gynecological-oncologists.
  • This blog was mentioned in the Navigating Cancer Site Blog. ( More to come about this new, beneficial site.)
  • I helped register walkers at the Kaleidoscope of Hope Avon-by-the-Sea Walkathon.
  • I became the proud owner of a 100% all american mixed breed puppy. She is a cutie.

I can't wait to see what October brings- in addition to pink ribbons!

Every Day is a Blessing !

Thursday, September 23, 2010

A Walk and Some Tea

There is still time this month to make a difference in the lives of women we love. Help raise awareness of the symptoms of ovarian cancer and funds for ovarian cancer research by walking or drinking tea. Both events on are Saturday, September 25,2010.

Kaleidoscope of Hope Foundation's Final Walkathon
Avon by the Sea, NJ
It is a beautiful location & the sound of ocean waves while walking is wonderful. Stop by the registration area and look for me.

There is still time to register or make a donation. Click here for more information.


Teal Tea Foundation - High Tea at the Chauncey Conference Center

Chauncey Hotel and Conference Center
Princeton , NJ
10% of the special Tea proceeds will go
Click here for information about the Chauncey.
Scroll to the bottom left of this page to order a ticket.

Hope lots of people enjoy these events.

Every Day is a Blessing!

Sunday, September 19, 2010

Check out this site for Ovarian Cancer Events in NJ

Here is a great source of information if you live in NJ and want to find Ovarian Cancer events. Check this calendar on the NJ State Department of Health and Senior Services Ovarian Cancer page.

Every Day is a Blessing.

Saturday, September 18, 2010

How Could I Forget

I've been so caught up in ovarian cancer awareness month activities and thanking my doctors at CINJ for these past five years that I forgot to thank someone .

There has been one person by my side these past five years - through every test, treatment & surgery . Who loves me when I am happy and when I am grumpy or when I am a nervous wreck. Who thirty-two years ago never thought the "In Sickness" part of our vows might mean giving up so much of what we could do together with what he had to do with and for me. Who has such confidence in a future that we bought a puppy. Thank you Nick for your love and for being the wind beneath my wings.

Every Day is a Blessing!

Friday, September 17, 2010

Cancer Hope Networks New Social Networking Site - HopeNet

The Cancer Hope Network (CHN) has a new website and a new social networking site called HopeNet. "Cancer Hope Network is a not-for-profit organization that provides free and confidential one-on-one support to cancer patients and/or their family members."

HopeNet is a social network specifically for cancer patients. Anyone can join the network. YOu don't have to be from NJ. You don't have to be someone who has been involved with Cancer Hope Network in the past. As of today there are groups for lymphoma , prostate , esophageal , and head and neck cancer survivors as well as a group for young adult survivors and a caregivers group.

One of the first groups I called when I learned I has ovarian cancer in 2005 was Cancer Hope Network. I was matched with a wonderful lady - a stage III survivor of 10 years. She certainly gave me hope. So once I was able to, I applied to be a CHN Support volunteer. I spoke to women newly diagnosed with ovarian cancer from all over the country. I did that until I recurred in 2008.

So when I was asked to moderate a group for ovarian cancer survivors and their caregivers and I was happy to accept. I named the group Teal Sisters and Supporters.
It is open to ovarian cancer survivors of any stage and their caregivers, families and friends.
To join the group you will need to register to enter the site - don't worry it is very easy. Then you can click on Groups and join. Feel free to share information about your diagnosis , treatment and how you are feeling. And of course feel free to ask questions. Our discussions will be guided by our members.

I hope you can join us!

Every Day is a Blessing! Today I am blessed by the wonderful volunteers at CHN.

Monday, September 13, 2010

A Way of Giving Back to My "Lifesavers"

Yesterday was the High Speed Chase for the Cure, a 5K run and 3K walk, which raises funds for the Cancer Institute of NJ through the CINJ Foundation. I formed the Team High Five a few weeks ago to celebrate my five years as an ovarian cancer survivor and to honor the five gyn-oncs at CINJ , their nurses and their staff . I consider them all my "Lifesavers". I along with the other members of High Five - Nick, my husband , and two long time friends Terry and Joan met at the Rutgers Athletic Center. Theresa, my daughter, was a virtual walker from all the way out in Kansas. It was great seeing so many CINJ folks, Candace, Michele, Dena and of course Dr Gannon- the surgical oncologist who did the surgery for my recurrence.

It started out as a cloudy, cool morning in the 60's. But as fate would have it just as the run/ walk started it became a cool and very wet rainy morning. That did not stop us or the hundreds of other runners and walkers from completing our task. It did though make me go a bit slower- I didn't want to slip on the wet road. We finished our 3K walk in around 30 minutes.

I finished the walk with a wet hat and soaked pants since my Rutgers red poncho couldn't cover everything. But I was thrilled that Team High Five was able to raise over $1000 for CINJ. I love going to my donor page and seeing the little thermometer fill up and listen to the cheers as the the stars shoot out of the top .

It felt great to give back to the people who saved my life.
Dr. Rodriguez, Dr. Gibbon, Dr. Nieves, Dr. Hellmann, Dr. Wagreich yesterday's walk was for you. Thanks!

Every Day is a Blessing! I am blessed to be treated by the talented doctors and nurses at CINJ.

Thursday, September 9, 2010

A Perfect Baby Boy!

It's a Boy! My niece and godchild, Alycia, gave birth to a 6 pound 2 ounce perfect baby boy, Declan Joseph.

He was born yesterday - September 8th which is the day the Catholic Church celebrates the birth of the Blessed Mother. My Aunt Dora was so happy that Alycia was having her baby on the eighth. Aunt Dora prays daily to the Blessed Mother and she is sure that Mary made sure that both Alycia and baby Declan were OK.

I am thrilled to be a great aunt- even if that term makes me seem very , very old. I can't wait to meet Declan in person. Just thinking about him makes me smile. And I know my sister Roberta is smiling down on Alycia, Kevin and Declan.

Congratulations Alycia and Kevin!

Every Day is a Blessing ! And my life just got a special blessing on Sept 8th.

Tuesday, September 7, 2010

Ellen is a Woman of Teal

This fundraiser is for friend, fellow OC survivor and Northern NJ NOCC member Ellen. If you are in NJ and want to have a meal and listen to music while supporting a good cause stop in to Kerwin's Tavern.

Every Day is a Blessing ! I am blessed by Ellen and Carl's friendship.

Saturday, September 4, 2010

A Special Day for the Teal Wings of Hope Foundation

Teal Wings of Hope Foundation is a foundation in NJ with the mission to "educate and promote awareness of Ovarian Cancer and provide support for all people touched by the disease." It was founded in August 2009 by Karen Neuls and Jim Baldinger. Karen lost her sister, Kathy, and Jim lost his wife, Michele, to ovarian cancer.

This morning, I was honored to tell my story of survivorship at the first annual Teal Wings of Hope Foundation - Ovarian Cancer Feat for Hope 5K Run and 1 Mile Walk . The day was beautiful- no sign of hurricane Earl- and the location in Veterans Park in Hamilton, NJ was wonderful. Both young and old and their dogs enjoyed spending time running or walking and remembering their loved ones and honoring survivors. Each walker got a goodie bag and a t-shirt and survivors were asked to put there handprint on a large canvas. Even NJ 101.5 Radio station was there with give-aways.

It was a pleasure to meet Karen and Jim as well as Larry Hill who spoke about being a caregiver. I really loved speaking with the Janet , Karen and Kathy's mother. She told me all the great things the foundation is doing to help women diagnosed with the disease. From providing transportation to doctor and treatment appointments to paying electric bills , the foundation is there to support ovarian cancer survivors every step of the way.

After my talk I was approached by a lady who thanked me for mentioning that all women could get ovarian cancer- Young and old alike. Then she told me how her granddaughter was diagnosed at the age of 4. I had heard of teenagers with ovarian cancer but not someone that young. It turns out that the little girl had abdominal pain just like I did. Her parents took her to the ER. And thank goodness they insisted that it was not constipation and that tests be done. Sure enough the tests showed a tumor on her ovary. I gave that girl a hug today. Made my day.

Based on the success of this year's run/walk I'm sure that next year's will be even bigger!

Every Day is a Blessing! I was blessed today to meet more survivors- young and not so young.

Friday, September 3, 2010

Another Survivor Spreading Awareness

I first met Courtney at the LiveStrong Survivors Summit in Austin in 2006. We were diagnosed with OC within 4 months of each other. Heck, we both had abdominal pain on the left side that sent us to the ER. She was 23 and I was 50. We have stayed in touch even though she is in Ohio and I am in NJ. And we both continue to LIVESTRONG!
Below is an e-mail she sent me - I am pleased to pass along some info for those in the state of OHIO.

Hi Everyone!

It's Teal Time !!

September is National Ovarian Cancer Awareness Month, as proclaimed by the president of the United States of America. Wow ... a whole month dedicated to ovarian cancer awareness!! Teal is the official color of ovarian cancer, and I'd like to ask that you consider wearing teal throughout this month, espcially on "Teal Day" , which is Friday, Sept. 3, as a sign of support for all those who have been affected by ovarian cancer. I know it might be hard to find teal clothing items, but consider wearing a teal ribbon on your shirt or in your hair, a teal pin on your lapel, a teal wristband, or any other type of teal jewelry or accessories.

On Friday, Sept. 3, there's a plan for the Portsmouth High School football coaching staff and cheerleaders to wear something TEAL during their football game to promote ovarian cancer awareness. There will also be a special prayer in the Trojan locker room with the players before the game for all the people touched by ovarian cancer.

Also this month, we are taking a crew to Columbus for the annual "Strides for Hope" 5k run/walk on Sunday, Sept. 12, to promote ovarian cancer education and awareness. The walk is an effort to prevent women from being impacted by this disease. It also provides a festive opportunity for families to celebrate survivorship, and to honor those who have lost their battle with ovarian cancer. If you would like to join our team or make a donation, just let me know! I'll be sending out another e-mail reminder about the walk next week.

There is some great information about ovarian cancer and ovarian cancer awareness month, especially the official proclamation by President Obama, at the following Web sites: &

As always, thank you very much for your love and support in the fight against ovarian cancer. Feel free to forward this e-mail to your friends & family members and remind them that SEPTEMBER is OVARIAN CANCER AWARENESS MONTH!


Every Day is a Blessing! I am blessed to have Courtney in my life.

Wednesday, September 1, 2010

OC Awareness Month - A Woman of Teal's Story

As Ovarian Cancer Month begins I wanted share an e-mail I received from a friend and fellow survivor ,Pam. Please read her story and share her message.

As September (Ovarian Cancer Awareness Month)is almost here, I have decided to let you know the reason why I Share my Story.
I share my story because I have joined the sisterhood of ovarian cancer survivors. I share my story because I like so many other women who have endured the shock of having cancer, battling cancer with the surgeries and chemotherapy treatments and the continual fear of cancer recurring have a story to tell. I share my story so that women of all ages are reminded of how important it is to always be aware of the very subtle warning signs of ovarian cancer. I share my story in the hope that if you do experience unusual symptoms (bloating, pelvic, or abdominal pain, difficulty eating, feeling full quickly, and feeling a frequent or urgent need to urinate); you will seek medical attention even though you might be fearful of the results. I share my story so that we as a community can become better educated regarding the facts and correct treatments so that unnecessary risks are avoided. I share my story in the hope that these, actions offer you the opportunity of dramatically improving your chances for survival.

I share my story because after being diagnosed with ovarian cancer stage IIIC and enduring eighteen rounds of chemotherapy (three different drugs everyday), which I completed on August 2008 for the 3rd time. I am in remission again. I share my story so you can see that the check-ups every three to six months are still nerve-wracking. I share my story because it is comforting to know that I am being followed very closely. I share my story so that you will know that throughout this experience, there were so many things in my life that helped me to remain strong and positive; support from friends, family, co-workers, doctors, nurses, and a husband who never left my side were the most significant.

I share my story so that people will know that I have gained so much information on this disease and continue to fund-raise for cancers that don't get much support. I share my story because I am excited about the new research in ovarian cancer which is leading us towards more effective screening tools and better treatment. I share my story because of the pain and sadness I have felt when I hear about Sisters who have lost their battle against this disease. I share my story because I have been overcome by fear and anxiety as I await results of blood work every six months, wondering if my cancer has come back. I share my story because as horrible as this disease is, I wouldn't trade anything for this journey. (I know that sounds cliche coming from a survivor, but it is true.) I share my story because I will continue to fight this monster called ovarian cancer and share my story so maybe someone else will have a chance of an early diagnosis, which will lead to a very long remission.
Help find a cure for "ALL" cancers... fundraiser to be
held at Leggetts on Nov 13, 2010. Details are at www.HopeForCancerNJ.Org

Every Day is a Blessing! I am blessed to have Pam ( and Ed) in my life.

Tuesday, August 31, 2010

Do You Read "Conversations"?

Back in 2005 while I waited for my gyn -onc to give me the OK to have chemo, I picked up a newsletter. Conversations- the International Newsletter for those Fighting Ovarian Cancer was the first ovarian cancer publication I ever read. And I continue reading it to this day. ( Happy 17th Birthday Conversations!)

There are many helpful tips from other survivors, a calendar of events being held across the country and in June and December the issues are dedicated to long term survivor stories. I love those. But I think the best part of the newsletter is going to the inside page which lists survivors. Every July there is my name - Dee , NJ.

Thank you Don and family for continuing the publication Cindy started. You have touched the lives of many women.

For more info check out the Conversations website. Would you like a copy of the newsletter? Fill out the form on their website or contact Don at :

P.O. Box 7948
Amarillo, TX 79114-7948
United States of America

Phone: (210) 401-1604
Fax: (210) 247-6169

Every Day is a Blessing!

Sunday, August 29, 2010

We Survivors are "Companions on a Journey"

What a beautiful Sunday !
The closing hymn at mass this morning was by Carey Landry, Companions on the Journey.( Lyrics located online at Seasons of the Spirit. ) I listened closely to the words and on the way back to Theresa's house I thought about the connections I have to other women who have been diagnosed with ovarian cancer.

"We are companions on the journey,
breaking bread and sharing life;
and in the love we bear is the hope we share "
We survivors share a hope.

"We have been gifted with each other,"
I know it sounds corny but every one of the women I have met have been a gift in my life. I celebrate as friends get good news and cry with others when the news is not what they expect.

"We will seek and we shall find"
Online and in support groups we seek the help of other survivors and social workers and they are there for us.

"to walk side by side with hope in our hearts, "
We do walk side by side with each other.

Yesterday, when we were out ,we passed an electronic billboard on Rt 70 advertising the Vicki Welsh Fund 6th Annual Whisper Walk for Ovarian Cancer to be held September 26th in Kansas City, Missouri. It was great seeing awareness being raised all over the US. And here I was 1000 miles from home and yet I felt a connection to all the women in Missouri and Kansas who are companions on this cancer journey with me.

Every Day is a Blessing! And I "believe in the love of our God".

Tuesday, August 24, 2010

2nd annual Spokes of Hope: A Cancer Advocacy Ride

My friend , kidney cancer survivor Dr. Ken Youner is the founder of the Cecile and Ken Youner Fund for Cancer Research. The fund has raised $28,000 so far and has supported Dr. Amato Gracia a cancer researcher at Stanford University.

From Ken's e-mail-
"On Sunday, Oct 10, 2010 you have the opportunity to do three of your favorite things. Ride your bike, eat, and yes help support those of us fighting cancer and help directly fund cancer research (OK 4 things). Join the Spokes of Hope: A Cancer Advocacy ride (meet time 8:30AM in front of hospital) at Englewood Hospital-in Englewood NJ 07631. We will then ride to the John Theurer Cancer and the Tomorrow Childrens Fund at Hackensack University MC in Hackensack NJ of course. We then ride back to NYC via the GWB and enter Central Park for a loop to The new Tisch Cancer center at The Mt Sinai MC on Madison Ave and 96th St. The ride is in memory of my beloved wife Cecile who died in 2008 of acute leukemia while battling stage 4 breast cancer. "

If you are in the NJ/ NY/ Conn / PA area and a cyclist who wants to ride for a reason please join Ken. More information can be found here.

Every Day is a Blessing!And my life has been blessed by having survivors like Ken as friends.

Monday, August 23, 2010

Just 5 words

I belong to a number of online groups for ovarian cancer survivors. Over the past 5 years, I have grown as close to these women as I have the women in my support group.

A fellow ovarian cancer survivor on one of these lists asked us to use 5 words to describe our life as a OC survivor. Here were my suggestions:

More research dollars desperately NEEDED!
 Finding strength to keep fighting.
 Treatment + Doctors+ Faith+ Family = Survivor
 Teal sisters talking- Please listen.

Every Day is a Blessing! - Well look at that ....5 words

Saturday, August 21, 2010

A Zeal for Teal Brunch- Celebrating Ten Years of Kaleidoscope of Hope Foundation

The Kaleidoscope of Hope Foundation is celebrating ten years of passionate advocacy and raising funds for ovarian cancer research by hosting A Zeal for Teal Brunch on October 10,2010.The event will take place at the Hyatt Regency in New Brunswick, NJ.

The Foundation will present honor doctors dedicated to the care and the treatment of women diagnosed with ovarian cancer. They are George Coukos, MD, PhD, Director, Ovarian Cancer Research Center, University of Pennylvania Abramson Cancer Center, Lorna Rodriguez, MD, PhD, Chief of Gynecologic Oncology, The Cancer Institute of New Jersey, Brian Slomovitz, MD, Gynecologist Oncologist, Carol G. Simon Cancer Center, Daniel H. Smith, MD, Gynecologist Oncologist, John Theurer Cancer Center at Hackensack University Medical Center, Mario M. Leitao, Jr., MD, FACOG, Memorial Sloan-Kettering Cancer Center and Darlene Gibbon, MD, Clinical Director of Gynecologic Oncology, The Cancer Institute of New Jersey.

The MC will be Jenny Allen . Jenny is an ovarian cancer survivor and writer/ performer of the show "I Got Sick Then I Got Better" . I wrote about the show after seeing it earlier this year.

The event will include the brunch, entertainment, a 50/50, and silent auction . Check the KOH website for information about attending and sponsorship opportunities. Cost to attend is $50. All proceeds from the event will be used to support the mission of KOH to support ovarian cancer research and to raise awareness of the disease.

I am proud to be a part of a NJ based organization that has done so much in its first ten years to raise awareness and funds for research.

Every Day is a Blessing!

Wednesday, August 18, 2010

BEAT comes to the US

Back in February of this year I wrote about the BEAT Campaign in the UK which is the awareness campaign for OVACOME. ( Bloating, Eating , Abdominal , Talk)

I just knew it was a catchy way of remembering symptoms. OCNA, NOCC, GCF and OCRF launched a "Recognize the signs & BEAT Ovarian Cancer Campaign" ( Bloating, Eating, Abdominal , Trouble) for September , Ovarian Cancer Awareness Month in the US. See the poster above.

I hope to hear that the BEAT campaign has made a difference in raising awareness of the symptoms of OC. Women need to know what symptoms to look for- and remember all women are at risk for OC - young, middle age and mature.

Every Day is a Blessing!

Saturday, August 14, 2010

"Get Back Up Again"

For the past few days I have been thinking about two friends of mine.

A and C learned in the last week that they have recurrences of their gynecological cancers. I met both of these women about three years ago at two different support groups for gynecological cancer survivors. In these group settings we have laughed together, shed some tears together and celebrated when we became disease free. We e-mail each other between group meetings with updates and jokes.

Their recurrences have gotten me thinking about how I felt when I recurred, the thoughts that went through my mind and my switch back in to cancer fighting mode from the new normal I found as someone in remission. Oh, and lets not forget how terrible I felt for having to put my family through yet more rounds of chemo. I remember my loss of freedom and control due to my surgery and chemo. I really hated having to postpone seeing people and not eating certain foods because of low counts.

So to my two strong friends and all women in chemo I offer these verses of the song "Get Back Up Again" by Toby Mac because you all know that your family and friends are here to help you get back up.

You turned away when I looked you in the eye,
And hesitated when I asked if you were alright,
Seems like you're fighting for your life,
But why? oh why?
Wide awake in the middle of your nightmare,
You saw it comin' but it hit you outta no where,
And theres always scars
When you fall that far

We lose our way,
We get back up again
It's never too late to get back up again,
One day you gonna shine again,
You may be knocked down,
But not out forever,
Lose our way,
We get back up again,
So get up, get up,
You gonna shine again,
Never too late to get back up again,
You may be knocked down,
But not out forever ...

Every Day is a Blessing!

Saturday, August 7, 2010

SRA Reading Programs and Chemo Brain

When I was attended Catholic elementary school we used the SRA reading program. It was an individualized reading program where you read a short story and answered multiple choice questions to check your reading comprehension. After completing the stories at one color level you would move on to the next color level. I remember the goal was to get to Purple (or was it Gold?) at your grade level and move on the next grade's program.

I loved to read back then and still do. One of the first things I did when I moved to our new home was to sign up for a Mercer County library card. Hightstown has this quaint brick library right by Peddie Lake. I've visited it a number of times since we moved in. I've borrowed cookbooks, novels , and a book on the history of Hightstown.

During my last visit to the library I noticed a book called A Kingdom Strange The brief and tragic history of the lost colony of Roanoke. I borrowed it because it deals with a similar time in history and region of Virginia that my son has researched for his master's thesis in history.

So I started to read it. I read the first 5 pages on the first day, started over on the second day and read the first 5 pages and 15 more. The next time I picked up the book a few days later I had to go back and read over the previous 2 pages to get my place. Frustrating. I noticed over the past 4 years that I can't remember details of what I read as well as I used too - I used to be a "Purple" level reader. I can remember themes but those details - character names, dates - they just are difficult for me to remember. Before I wrote the post on the Elizabeth Berg character I reread the last 5 chapters of the book. When I spoke to my son I told him I was reading the book. I also mentioned that I didn't know that the leader of the Roanoke colony committed suicide because he left the colony to get aid and when he returned everyone was lost. My son said " Mom - I wrote about that in my thesis" . I read his thesis about fear in Jamestown in the early 1600's twice so I was a bit upset that I did not remember that big detail.

I know that I am more easily distracted now. I need to write myself notes to remember to do things and I've started to take notes on long articles & books that I read so that I can remember content better. Maybe I don't remember because I am trying to do too many things at one time or that I am getting older. But I think a big portion of not remembering what I read is chemo brain. I seemed to have gotten worse after finishing the chemo for my recurrence.The American Cancer Society has an interesting page on chemo brain. I experience many of the symptoms listed there. As cancer survivors live longer we sure need more research into the issues of what causes chemo brain and ways to prevent it.

I enjoy reading too much to give it up so I'll just keep plugging away even if I am back at the "orange " level. I'll just reread things if I have too. And keep correcting and revising things that I write.

Every Day is a Blessing! I am blessed because I still have good eyesight and can read- even if I don't always remember what I read.