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