It 's those little things....

Once again rabbits built a nest in our backyard.We didn't see them for a few days and I was worried they had abandoned the nest. But as you can see from the photo above they are back.

Then as I was watching the rabbits - out from under the large rock in our garden came a chipmunk. Check out the little guy on the edge of the grass. Being the Disney fan that I am all I could think of was Chip and Dale.

So in addition to the deer who use our property to travel back and forth to the green acres across the street from our home, we have a bunny family and chipmunks. Who needs the National Geographic Channel. I can just look out my window.

See it is those little things that make life grand!

Livestrong
Dee
Every Day is a Blessing!

KOH Fundraisers

Here are two fun ways you can help Kaleidoscope of Hope Foundation raise money for ovarian cancer research.

May 18,2009
Diane Castle Memorial Golf Outing
River Vale Country Club - River Vale, NJ
7am Continental Breakfast, 8am shotgun start, lunch , dinner and prizes

$200 per golfer
Time is running out to register but if you would like to send a gift or donation please contact Jim Castle jjc11@optonline.net or Rich Castle at richie.castle@otis.com

June 5, 2009
Cindy's Comrades is sponsoring "Bingo for a Good Cause" to benefit KOH
Lodi Moose Lodge
215 Charles Street, Hackensack , NJ
Doors open at 6:30 pm

Donation :$ 50
includes open bar, food, prizes , gift baskets

Livestrong

Dee
Every Day is a Blessing!

OCNA - 12th Annual Conference Info

Information I received in an OCNA e-mail:

Join Us in a Celebration of Life!

The Ovarian Cancer National Alliance's annual conference is about you, and the part you play in helping to find a cure. It's about empowering you to use your story, your voice, and your commitment -- together with other stories and other voices -- until the sounds we make are heard loud and clear by everyone who can help us make a difference.

This is the time. This is the place. This is the Conference where you can help make a difference by playing a part in our united efforts to save women's lives.

We hope you will join forces with us in the Nation's Capital.

Please see below for a list of frequently asked questions including information about registration, scholarships, travel, roommate options, new program highlights and more!

To register and learn more about the Conference, visit www.ovariancancer.org/conference

Is there a registration fee for the Conference? There is a cost to attend the Conference and we encourage you to register early to receive the discounted rate. Early Registration (on or before May 31): $150 Regular Registration: $200 Onsite Registration (after July 3): $250 Lobby Day on Capitol Hill has a separate fee. Online registration (on or before June 5): $100

Team JLO -Top Fundraising Team for Sandy Sprint 5K

Well the results are in...
Team JLO - was the number one fundraising team for the Sandy Rollman Foundation's Sandy Sprint 5K in Philadelphia yesterday!

What an awesome job by the entire Lopez family and their friends in raising awareness and funds for ovarian cancer research.

Dee

Every Day is a Blessing !

More Difficult Words to Write

I learned last night that a dear friend of mine, Lyn Rossi, passed away. Lyn was a Woman of Teal.

I have begun this entry a few times but can't seem to find the right words.
I am sad for Lyn's husband, two children, sister, brother-in-law, nephews and mother because Lyn was such a special caring woman. This might seem selfishly but I am sad for myself - I will miss Lyn. Lyn's family and ours go back to the days when our son's were in elementary school together- they are now 23 . Back in those days Lyn was every teacher's dream class mother. She was creative and helpful and boy could she cook. She made the best crumb cake. She could have a show on the food network.

On days when I had teacher meetings my kids would spend time with Lyn and her children. Of course, first priority after a snack was finishing their school work. When the weather was warm they played in their pool or out in the yard and when it was too cold they were down in the basement.

There was always time for tea with Lyn. As a friend she was so easy to talk to. When my sister was ill and passed away she offered words of hope and consolation and prayer but mostly her friendship - which was worth its weight in gold.

While the boys were in High School Billy spent a few winter breaks on vacation with us in the Poconos. And along with the Linkin's, we adults stayed in touch even when the boys were off to different colleges.

Lyn and I were both diagnosed with OC disease - myself in the summer of 2005 and Lyn in the fall of 2007. We have walked the path through the surgeries, CT scans , chemos and follow-up visits. Lyn never complained - except maybe about her wig but we all do that!

I will miss my friend. May her family find peace and love. And may we find a way to stop this disease from affecting other women's families.

Livestrong
Dee
Every Day is a Blessing - even if a little bit of a blessing is missing.

Chemo # 6

Today was the 6th treatment for my recurrence ( 15th all together) . Carla was once again my cheerful and considerate nurse. The taxol infusion went very smoothly. I had a visit from one of the ladies in my CINJ support group. It was a sweet gesture and made the time go quickly.

I saw one of my gyn oncs before the treatment. My physical exam went well. That is good news.
We will wait to see what my CA 125 is this time and get a CT scan before we make the final decision about stopping or continuing. My CA-125 has been 10 twice in a row. If it stays the same then most likely I can stop chemo. If it drops down to 8 then I might be asked to continue 3 more cycles.

I am scheduled for a CT on May 4th. That info will help decide if I will continue in treatment or not.

I really would like to make that trip to Kansas in May so I hope and pray that my CA-125 will remain at 10 and my CT scan will be clear.

Matt is home for a few days to go to the dentist and have his car checked. Murphy is here too. It is great having a dog in the house again.

Livestrong
Dee

Every Day is a Blessing.

2009 Teal Tea, Supports Ovarian Cancer Research at CINJ

__________________________

Established in 2008, The Teal Tea Foundation , is a 503(C)(3) foundation. It was founded by Jean Shipos an OC survivor. The foundation's mission is to raise awareness of ovarian cancer and funds for research. Proceeds from this year's tea will go to support OC research at the Cancer Institute of NJ.

I am thrilled to have been invited to discuss writing this blog as part of a speakers panel at the Tea. If you visit the Teal Tea Foundation website you can buy tickets and read about the auction items, table contest and hat contest. I look forward to being part of this wonderful event.

Livestrong,
Dee

Every Day is a Blessing!

Team JLO Event

It was wonderful getting together with friend and fellow survivor Janice and her wonderful family last night for the 3rd annual Teal Night at the Olive Branch to support Team JLO. Team JLO will be participating in this year's Sandy Rollman Foundation's Sandy's Sprint. Sandy Rollman Foundation raises awareness and funds for ovarian cancer research. Support Team JLO here. A special thanks to Doug Schneider and the staff at the Olive Branch for their support of Team JLO and raising awareness of OC in central NJ.

Sandy's Sprint Race Details:
Saturday, April 25, 2009, 8:30 AM
Carousel House in Fairmount Park (Belmont Avenue & Avenue of the Republic) in Philadelphia

Since I will be having chemo next week I won't be able to make this year's walk but Janice and I agree that come next April the two of us will be walking through Fairmount Park. ;o)

Livestrong
Dee
Every Day is a Blessing!

CINJ Receives Community Program Grant from the Lance Armstrong Foundation

I am so pleased to report that CINJ ( where I am treated) received a $100,000 Community Grant from the Lance Armstrong Foundation to train health care providers in NJ about the emotional and physical needs of cancer survivors. The Buildings and Bridges Program is part of the recently established Center for Cancer Survivorship at CINJ. CINJ is NJ's first and only National Cancer Institute-designated Comprehensive Cancer Center.

"Receiving a boost from one of the nation’s most highly recognized cancer foundations, The Cancer Institute of New Jersey (CINJ) will be able to expand a successful clinical program that meets the unique needs of cancer survivors. The Buildings and Bridges Program is being made possible by a $100,000 Community Program grant from the Lance Armstrong Foundation, which seeks to inspire and empower people affected by cancer. The award was made recently to the CINJ Foundation. CINJ is a Center of Excellence of UMDNJ-Robert Wood Johnson Medical School.
Through peer-based training, the Buildings and Bridges Program enhances the capacity of nurses, social workers and other healthcare providers to meet the practical and emotional needs of cancer survivors. It is an extension of CINJ’s Center for Cancer Survivorship (CCS), a newly established entity serving as a focal point through which all survivorship research, clinical, educational, and advocacy efforts are coordinated . ...
Denalee O’Malley, MSW, is the supervising program development specialist for the CCS, who designed the Buildings and Bridges Program program. “The aim of this educational program is to build an understanding of cancer as a chronic disease that is survived, with ongoing practical and emotional impacts that can be managed. By educating health care workers we can be sure that we not only enhance the quality of care and resources available to survivors, but that we also increase community awareness about the ongoing challenges experienced through the different phases of survivorship. We are grateful to the Lance Armstrong Foundation for this support,” she stated."
The complete press release can be found here.

On a personal note, I am happy to have been asked to be a member of the Survivors Advisory Board for the CCS.

Livestrong!
Dee
Every Day is a Blessing!

We will Prevail.....

When Nick and I visited Tech last weekend we walked over to the April 16th Memorial in front of Burruss Hall. We had been there before- when the Memorial was dedicated in August 2007, when we moved Matt into his apartment in January 2008, and last May for Matt's graduation.

Each of the 32 Hokie memorial stones had a daffodil laid beside it.

On this the 2nd anniversary, I read my entry for April 16, 2008 and the memories came flooding back.
My thoughts and prayers go out to the families of the students and faculty who lost their lives that day and to all the students , faculty and staff of VT.

Nikki Giovanni said:
We will continue to invent the future
Through all our blood and tears
Through all this sadness
We are the HOKIES
We will prevail!
We will prevail!
We will prevail!
WE ARE VIRGINIA TECH!

And they have prevailed......

Hokie Mom,
Dee

A Wonderful Easter Weekend

I spent most of last week resting just so Nick and I could make the trip on Friday to Blacksburg to visit Matthew. And that is just what we did. Nick drove the entire 8 hour trip and I slept right through most of Pa, all of Maryland and West Virginia and half of Virginia.

We stayed at the Inn at Virginia Tech which is right on campus and about a mile from Matt's apartment. We spent some fun time with Matt's puppy . We think Murphy is part beagle and part German Shephard.He is so cute! We did a little bit of shopping Saturday afternoon. I bought a Tech bandanna to wear to,what I hope will be, my last treatment on April 22nd.

On Sunday, we attended Mass at the Squires Student Center in the Ballroom. It was a wonderful service attended by more than 600 students and family members. After we ate brunch at the Inn, Matt went back to his apartment to do work on his graduate thesis proposal on Jamestown and Nick and I took a walk on campus. The day was sunny and not one cloud in the sky ( The photo is of Burruss Hall at VT.) . We walked to the duck pond then on the the Drillfield and the April 16th Memorial. After I napped for an hour we were back at Matt's apartment for a delicious lasagna dinner.

It was important for me to make this trip to see Matt as it is important that I make the trip to see Terry and Andy in Kansas in May. Cancer treatment may sideline me for a bit but will not stop me from being with my family.

Livestrong

Dee
Every Day is a Blessing !

I've got things to avoid

I got a call yesterday from my nurse practioner at CINJ that my previous days blood work showed low neutrophils ( white blood cells) and that I needed to take neutropenia precautions. Since white blood cells fight infection my body would have trouble fighting off a cold or infection in a cut. I felt a bit more tired this cycle so I had a feeling something was not normal. I thought it would be my hemoglobin.

This is the first time that I have had neutropenia since my first chemo in 05-06. So I pulled out the old "Symptoms and Side Effects" handout I got from CINJ and put those precautions into effect.

• Avoid uncooked fruits and veggies
• Avoid large crowds of people w/colds etc
• Avoid activities that may cause cuts and breaks in the skin
• Avoid walking barefoot
• Wash hands often.
• Take my temp daily. (If it is 100.5 degrees or higher I need to call my doctor immediately.)
  
• Use moisturizer if skin is dry
  
• Get plenty of rest

So yesterday I rested - read a book & watched TV . Today I woke up feeling more energetic but will be off the computer soon and resting some more.

Livestrong

Dee
Every Day is a Blessing! even if you receive news you weren't expecting.

Please Write your Senator Regarding ALERT Bill

I first wrote about ( S 717 ) 21st Century Cancer Access to Life-Saving Early Detection, Research, and Treatment (ALERT) Act back on March 27th.

Today I am asking you to contact Senator Lautenberg and Menendez (or the Senator from your state) and ask them to become cosponsors and supporters of this bill. You can take advantage of an easy website that the Lance Armstrong Foundation has designed to contact your senator. You don't have to look up your Senators e-mail address it will fill the info in for you once you put in your zip code.

Click here to e-mail your Senator.

The text of the bill is also online at the Library of Congress site - Thomas. You can search for S 717 in the home page for all the pertinient info about the bill or click Here for the text of the bill.

Now I have not read every word of the bill but I did read section 7 on biomarkers because I would love to find one for ovarian cancer, section 10 on patient navigators because I heard a lot about navigators at the LAF Summit and section12 on cancer survivorship because understanding long term effects of treatment and developing survivorship plans are crucial.

Thanks to the LAF for making communication with our senators so easy.

Livestrong
Dee
Every Day is a Blessing!

A Fabulous KOH Gala

On Saturday night, Nick and I attended the Kaleidoscope of Hope Foundation Spring Gala at the Westin Gov Morris in Morristown, NJ. Thanks to the hard work of John Stewart and Ann Marie Battaglia and their scores of volunteers the night was a huge success. The event was well attended with tasty food, a fun to dance to band and nice silent auction items. I was outbid on the item I was bidding on.

Jo Jo Starbuck, Olympic figure skating medalist was the MC for the night. The Founders Award -an engraved kaleidoscope - went to the Hematology and Oncology Associates of northern NJ for their support of KOH. The Foundation also presented research grants to Janet Sawicki, Ph.D. ( Lankenau Institute) for her research into siRNA and Selva Karuppaiyah, Ph.D. ( The Ohio State University) for his research into STAT 3 inhibitors. The Cancer Institute of NJ received the Gail MacNeil Scholar Award and the Gynecological Cancer Foundation also received funding for early detection grants .

To me the best part of the evening was speaking to so many people whose lives have been touched by ovarian cancer. There were survivors, caregivers, family , friends, researchers, oncologists and gynecological oncologists as well as representatives from other OC organizations like Lynn from the Northern NJ NOCC, and Adrian from the Sandy Rollman Foundation. I enjoyed chatting with my doctors from CINJ wearing something other than those silly hospital gowns or being attached via my port to an IV pole. Actually we all danced to the song "I will Survive" by Gloria Gaynor. Priceless!

Thanks to everyone who supports KOH and their mission to find an early detection test and a cure.

Livestrong

Dee
Every Day is a Blessing ! "I will Survive" ......

CMS Approves PET scans for OC Patients

Great news for OC patients !
OCNA issued an e-mail regarding the Centers for Medicare and Medicaid Services coverage of PET scans:

"CMS has reviewed evidence on the use of FDG PET imaging to determine subsequent treatment strategy in patients with ovarian cancer. CMS has determined that the available evidence is adequate to determine that FDG PET imaging improves physician decision making in the determination of subsequent treatment strategy in Medicare beneficiaries who have ovarian cancer, improves health outcomes and is thus reasonable and necessary under§1862(a)(1)(A) of the Act. Therefore, CMS has determined that FDG PET imaging is nationally covered for this indication for this tumor type."

In OCNA's e-mail they noted that PET scans were considered so effective by doctors that almost as many OC patients were scanned through the National Oncological PET Registry as were prostate cancer patients . There are 11 times more prostate cancer diagnoses per year than ovarian cancer diagnosis.

Back in 2005 I went back and forth with my insurance company for 8 months before they finally covered my PET. It is great to know that I won't have to worry about coverage in the future.

Thank you Cara Tenenbaum (OCNA) for advocating for the PET coverage.

Livestrong

Dee

Every Day is a Blessing.

Catching up with my Primary Care Physician

Yesterday, I had a great phone conversation with my personal care physician, Dr Jim. I had faxed him the day before to update him on my treatments and blood results and he personally called me back to chat.

I've heard many folks talk about the communication or lack there of between their primary care physician ( PP) and their oncologist. Maybe we shouldn't rely on the docotors to communicate with each other but rather why don't we be the conduit of information. I have tried to keep my PP in the loop as much as possible and that has made a big difference.

When I was first diagnosed in 2005 and had surgery , my primary care doctors ,who were all internists, stopped by the hospital and answered lots of my questions. They offered advice on recovering from my hysterectomy. I knew I was in the very capable hands of my gyn-oncs but I didn't want to loose touch with the doctors I had seen for over 10 years. So while I was on chemo I would fax my PP every two or three chemo cycles to let them know how I was doing.

When I finished my chemo in 2006 and started seeing my gyn-oncs every 3 - 6 months I again started my routine exams with my PP. They were on top of my past cancer history, what drugs I was taking and my other health concerns - from allergies to aches and pains from over exercising. ( The exercise complaints didn't happen too often.)

When I learned in October that I had recurred, Dr Jim was more than happy to talk to my husband and I about these new developments.

So when I finish chemo in a few weeks Dr Jim will see the entire ME - he will know where I 've been and what he can do to help me in the future.

So my advice is to keep those communication lines open between you and your PP. Send them a fax or write them a letter.

Best part is that Dr Jim is a Hokie Fan!

Livestrong
Dee
Every Day is a Blessing.

Save the Date- July 6-9 12th Annual Ovarian Cancer National Alliance “Celebration of Life” Conference

Here is info from an OCNA e-mail:

12th Annual Ovarian Cancer National Alliance “Celebration of Life” Conference
July 6 – 8, 2009 ■ Omni Shoreham Hotel ■ Washington, DC
July 9, 2009 Lobby Day on Capitol Hill

The Ovarian Cancer National Alliance’s annual conference is about you, and the part you play in helping to find a cure. It’s about empowering you to use your story, your voice, and your commitment – together with other stories and other voices – until the sounds we make are heard loud and clear by everyone who can help make a difference.

This year, our conference will be offering a new and exciting agenda including:

• Lectures from notable clinicians and researchers in the areas of clinical trials and new or emerging technology and treatments

• Workshops, social and support events for survivors and their family members about living with ovarian cancer

• Advocacy workshops to help train survivors, family and friends about how to participate in Lobby Day on Capitol Hill

With a new Administration and Congress dedicated to Healthcare Reform, this is the year to be in Washington, DC. This is the time. This is the place. This is the Conference that you can help make a difference. We hope you will join forces with us in the nation’s capitol.

Conference registration now open! To learn more please visit www.ovariancancer.org/conference