Check out the WEGO Health Activist Speakers Bureau

I just applied to the WEGO Health Activist Speakers Bureau and I thought some of my fellow bloggers and cancer advocates might be interested in learning more about it as well – it’s a great way for Health Activists to share our stories, raise awareness and get the word out about the work we’re doing.

Members of the WEGO Health Activist Speakers Bureau receive exclusive invitations to present at conferences, speak to members of the media, and be featured on WEGO Health.

Interested in joining the WEGO Health Activist Speakers Bureau? Apply today! It only takes a few minutes and they’ll email you as soon as they have opportunities relevant to you and your interests.

Dee

Every day is a Blessing! 

Seven Years and Counting

I am really thrilled to be posting this entry.

On Sunday, July 29th I will celebrate my 7th "cancerversary".

I can still remember the words Dr Lorna Rodriguez said to me in the recovery room of RWJUH late in the morning of Friday July 29, 2005. She said,  "Dee, I am sorry. I found ovarian cancer. You were stage 3B. But I will do my best to treat you and make you well. " And she and Dr . Gibbon did just that not once but twice. They are my lifesavers. Thank you Dr. Gibbon and Dr Rodriguez.

And of course I can't forget to thank the best caregiver in the world my husband, Nick, my children Terry and Matt and all my family and friends. Your love and support helped me through the toughest parts of this journey. I Love You All.

Dee
Every Day is a Blessing!

Stress and Bone Metastasis

In the past I have written about stress and ovarian cancer. Once in "Stress and Ovarian Cancer - NCI Bulletin" and again in "Integrate Cancer into the Tapestry of Who You Are". 

Yesterday @RoswellPark tweeted about stress and metastatic breast cancer. Because of the genetic connection between ovarian and breast cancer I followed the link to this press release from Vanderbilt University Medical Center titled "Stress fuels breast cancer metastasis to bone"  . 

I don't usually write blog posts from press releases so I looked further and found the team of researchers also published in the PLOS/Biology and online peer reviewed journal in an article titled "Stimulation of Host Bone Marrow Stromal Cells by Sympathetic Nerves Promotes Breast Cancer Bone Metastasis in Mice." Feel free to read the entire article ( complete with graphs, photos and citations) online. 

In a nutshell, Vanderbilt Center for Bone Biology researchers using a mouse model for bone metastasis found through experimentation that making the sympathetic nervous system ( In humans stress and depression activate the system.) active in mice promoted breast cancer cell colonization in the bone marrow of the mice .  Their results showed that the stress activated RANKL ( a protein found in the bone that stimulates the break down of bone ) and helped to promote the cancer cell migration. They also showed that chronic stress in vivo can be blocked by introducing the beta-blocker Propranolol. Their conclusion was that the use of Beta blockers and drugs that interfere with the RANKL signaling like Denosumab, a drug approved to build bone mass could increase patient survival if used as adjuvant therapy. 

I am sure that human trials will be forthcoming since beta -blockers are generally safe and used by many for blood pressure control and migraines prevention. 

It is research like this that is so exciting to read about. 

Dee

Every Day is a Blessing. 

Secondary Cancers and Recurrent Cancers Do Make Us Worry

It was a busy weekend and I have gathered a number of different ideas for blog posts.  I will begin with some comments prompted by an article in the New York Times Well section. The article by Steven Petrow, a testicular cancer survivor,  was titled "New Cancer Threat Lurks Long After Cure". You can visit here for the entire article.

The article began with a discussion of Robin Roberts latest diagnosis of myelodysplastic syndrome a secondary cancer most likely caused by the breast cancer chemotherapy treatment she was given. I know a number of survivors who have had multiple cancers. And studies have shown that treating cancer with chemotherapy or radiation can lead to other cancers. This is especially true of child or young adult survivors.  But as the article stated with 14 million cancer survivors in the US and since those diagnosed with cancer  are living longer, the threat of a secondary cancer is real.

My concern is not so much for a secondary cancer but like so many ovarian cancer survivors my concern is a recurrence of the same type of cancer. Ovarian cancer is one of those cancers that is, for lack of a better word, is notorious for coming back. I have had one recurrence already in 2008, two and a half years after finishing treatment for stage III B ovarian cancer. My CA-125 was normal and it was a CT scan that picked up the growths on my liver and spleen. Do I worry that it might recur again?  Nope. Honestly? Yes, I do. Do I think about it all the time? No.  I've learned over the years, a number of good techniques to get me through those tough times. My Gyn-Onc and I have put together a good follow-up plan of check-ups and CA-125's and CT's to catch it early.

So do I worry or think about other cancers?  Not too often. Do I have an annual mammogram? Yes, I do . Do I worry about going for a mammogram like I do a CT scan or the CA-125 blood test. No. Not sure why but Breast Cancer does not scare me. If I could handle treatment for ovarian cancer  twice I know I can deal with any treatment breast cancer could require of me. On a good note, I just went for my annual mammogram and it was clear.

Mr Petrow brings up in his article that 58% of cancer survivors suffer from anxiety, stress, depression and post traumatic stress syndrome. I applaud Mr Petrow for bringing that number to light. I was dealing pretty well until the recent loss of a friend's niece and  two wonderful women from my support group within months of each other. Over the years I grew to know these women for more than their cancers but their love of children,  their families , God, and the simple things of life like holding hands. So after 6+ years as a cancer survivor, I needed to find some extra support. And I did. I feel much better and feel I am getting back to normal - another new normal.

So if you are a survivor do not be shy about talking to your physician or nurse about what you need physically and emotionally to make this journey  smoother.


Dee
Every Day is a Blessing!

Panera Bread's - Operation: Lemon-Aid for Kids

I love the soups, breads and salads at Panera Bread. And I especially like that some of the Panera's in NJ are part of an event to raise funds for the Cancer Institute of New Jersey's ( CINJ) Division of Pediatric Hematology/ Oncology.

The Operation: Lemon-Aid for Kids event takes place on July 21st from 10am to 2pm.   Panera Bread will offer their 9oz  delicious ( I love their lemonade) to customers who donates $1 to CINJ. Check out this Panera Bread web page for locations involved in the event.

You might just see me at the North Brunswick store.


Dee
Every Day is a Blessing!

12th Annual Sandy Rollman Ovarian Cancer Foundation Gala

The Sandy Rollman Ovarian Cancer Foundation cordially invites you to:

TEAL PASSPORT: Sandy Rollman Ovarian Cancer Foundation 12th Annual Gala & Auction In Memory of Lisa Loonstyn-Golden

Arrival Time: Saturday, September 15 at 7:00 PM

Destination: Houston Hall, Hall of Flags (3417 Spruce Street, Philadelphia, PA)

Pilot: Lauren Hart

Event Chairs: Mr. & Mrs. Joseph Kaufmann

TRAVEL ITINERARY

Leg 1: 

Director  Angela Carlino Excellence in Ovarian Cancer Research/Care Award to Robert Burger, MD, Director of the Women’s Cancer Center at Fox Chase Cancer Center

Leg 2: Donna Webb Spirit of Survivorship Award to a member of the Sandy Rollman Ovarian Cancer Foundation

Leg 3: The first Lisa Loonstyn-Golden Sunshine Award to Nicole Beegle

Leg 4: Take a tasteful journey with authentic cuisine and  drinks from different cultures, compliments of Carlino's Specialy Foods

Leg 5:

Bid on live and silent auction items from around the world

Travel Attire is "cocktail" and "teal tie" optional. For more information email robin atrobin@sandyovarian.org. Register online Here.  If you cannot attend and would like to make a donation, click here.

Boarding passes are $125 per person

Boarding passes for those 25 and under are $60 per person

All proceeds benefit the Sandy Rollman Ovarian Cancer Foundation

For more information, visit www.sandyovarian.org

Dee

Every Day is a Blessing!

Reaching out to the Halls of Congress from NJ

This morning many of my fellow Ovarian Cancer survivors  will be heading to Capital Hill to talk to their Senators and Congressmen. Although I am unable to make the trip this year, I did send e-mails to NJ's senators and my representative.

Here is the e-mail I wrote:

I am a NJ resident and 7 year Ovarian Cancer survivor thanks to the
doctors at the Cancer Institute of New Jersey. Although I am not able to
visit you in person today,  I am requesting that you support the Ovarian
Cancer National Alliance's initiative to fund innovative research;
increase awareness and ensure parity in drug coverage for ovarian cancer
patients.

* Recognize Ovarian Cancer Awareness Month by becoming a sponsor of the
House Resolution; contact Molly Ahearn in Representative Israel's office.

* Support appropriations of $20 million for the Ovarian Cancer Research
Program for Fiscal Year 2013.

* Become a co-sponsor HR 2746, the Cancer Drug Coverage Parity Act.

Taken together, these actions will help our nation make progress toward
identifying ovarian cancer at its earliest stage and reducing mortality
from the disease.

Sincerely

If you get a chance please go to this site and send your senators and representatives an e-mail urging their support.

http://www.capwiz.com/ovarian/issues/alert/?alertid=61558216&type=CO


Dee
Every day is a Blessing!

Pennsylvania Race for Ovarian Cancer

Although I have been concentrating on ovarian cancer awareness events in NJ , I thought I would pass along the information I received about a race in Willamsport , PA.

"The 2012 Kathryn M. Freeman Race for Ovarian Cancer will take place on November 3, 2012 in South Williamsport, PA.  There will be a half marathon and 5-mile walk, both beginning and ending in the South Williamsport Community Park.  

Money raised from the 2012 KMF for Ovarian Cancer will go to the Susquehanna Health Foundation, more specifically their Spirit of Women program.  We are working on inviting a speaker involved with ovarian cancer for their annual Girls Night Out.

You can learn more about the race, registration, fundraising, and Kathryn by visiting http://kmfraceforovariancancer.com/"

Dee
Every Day is a Blessing!

Have You Ever Been Happy to Renew Your Driver's License?

Recently I received my NJ driver's license renewal form in the mail. On the top of the form it stated that I needed to visit a NJ Motor Vehicle Commission to complete the process. I was so excited I couldn't wait to go. I can see you are thinking to yourself as you read this " No one likes to visit the DMV , what is wrong with you!"

No, there is nothing wrong with me. I am just really happy. To explain I will need to take you back in time to July of 2006. Back when I dreaded having to renew my license.  Why? Just four months before I had finished my ninth and final chemotherapy treatment and was disease free. I was trying to get back to normal and now I had to get a photo license. ( A state requirement since 9/11) . The hair on my head was not even an inch long. I just didn't want to go. In addition , the new licenses were issued for 6 years. Would I even be here in 6 years? Well I put off the renewal as long as I could and then went to the DMV and had my photo taken.

So for the past 6 years I have been walking around with a photo of me with very little hair. Then my hair grew longer and those checking ID at the airport spent a bit more time looking closely at me and then back at my ID. Who knew that the photo on my license and my appearance would match again in 2009 when I was being treated for a recurrence. Most of the time since then I have been changing my hairstyle and growing my hair.

How pleased I was today to be spending time at the Motor Vehicle Commission office waiting to renew my license. They checked my paper work (twice) and I paid my fee. Then I was asked if I wanted to keep the current photo. I said, "No thank you,  I  think I want one with hair this time". The woman smiled and took my photo. As I showed Nick my new license I said " You know I never thought I would be doing this 6 years later ." He gave me a big hug.


Dee
Every Day is a Blessing!

A Book for Caregivers

Over the past few months I have been following the tweets of Rob Harris, a cancer caregiver
(@Rob_Cares) . He has written some great advice in those tweets for caregivers of those with a serious illness. He also writes for his website http://robcares.com/  .

Rob has taken his experience as a caregiver and the advice he provides to others and gathered them together into a wonderful book called "We're In This Together: A Caregiver's Story".  The story is about his wife's battle with two cancers and his role as a caregiver. But the book includes 70 tips which are helpful not only to caregivers but family and friends of those facing a chronic illness, too.

You can purchase  the book on Amazon. A dollar from every book sold will go to the Leukemia and Lymphoma Society to help cure blood cancers.

Please share the word about this helpful book with those you think might benefit from the advice- I just did.


Dee
Every Day is a Blessing!

The Unexpected

Last evening we saw the dark clouds gather to the west and heard the thunder . My son and I took the patio table umbrella inside just as the rain began. Within a matter of minutes the rain got heavy and the wind picked up blowing straight at the back of our home.

I watched as the wind picked up the heavy outdoor rug by the sliding door and tossed it on to the lawn. Then I watched as the potted dwarf spruce got pushed sideways and went tumbling down into the sluice between my house and my neighbors.  Like dominos off flew two low rectangular planters filled with geraniums, a pot of parsley, a pot of basil and a tomato plant complete with cage. Lastly , off flew my plastic watering can. It ended up in my front yard. Then the siding on my neighbors house started flapping up and down.  Even the dogs were upset with the thunder and lightening. Amber was literally shaking in her crate. I didn't put her there she went on her own.

The wind had cleared off all the plants on my patio except for a potted fig tree. Fifteen minutes later we were out rescuing the plants. This morning I had to repot and add soil to every plant that had been on the patio.

This experience was very unnerving. I don't know how my daughter deals with those regular tornado warnings out in Kansas. Sky can be blue and 10 minutes later there is a warning.

Sure I knew that we were supposed to get a storm but I in no way thought the winds would kick up the way they did. I think it was worse than Hurricane Irene last year.

This experience made me think about how you may feel when you get a cancer diagnosis. You don't feel right physically so you go to the doctor. You know something might be wrong but no way do you think you will hear the words "You have cancer". You try to get a handle on things and then start to put things in place to get treatment.  

Some things are just totally unexpected and unnerving.

Dee
Every Day is a Blessing.

What Words Do You Use?

The other day someone asked me "Do you have cancer or have you had cancer?" I answered "I had cancer because I have no evidence of disease right now but... I know it can come back at any time. I can go back to having cancer."  I don't particularly like having to qualify my statement but that is just the way it is to be a woman who had ovarian cancer. And there are women throughout the country dealing with the same question. The NCI on it's SEER webpage says "On January 1, 2009, in the United States there were approximately 182,758 women alive who had a history of cancer of the ovary. This includes any person alive on January 1, 2009 who had been diagnosed with cancer of the ovary at any point prior to January 1, 2009 "

That question got me to thinking about the terms I use to talk about my journey with cancer.

I call myself a cancer survivor. I have some friends who also call themselves survivors. They take on the title as a honor. In other words, they have been there, done that and they are still here.  I have other friends who shy away from that term. Some because they are still in treatment ,others because they only had surgery and not chemotherapy or radiation and some just want to put the cancer behind them.

I have said I kicked cancer's *ss - twice which denotes I had a fight with it. I have also said I have battled ovarian cancer for 7 years. I know people who despise the use of war terms when it comes to dealing with their cancer. I think of it in those terms because I have not been able to find another term which denotes studying the situation, pulling together my resources ( doctors, treatments and family/ friend support) , deciding on a plan and then overcoming a danger that is a threat to my life. I don't care that the threat is not an external threat but an internal one. I don't care that the treatment is no longer on my front lines any more. But I continue to deal with the side effects of the battle and must stay prepared to fight by doing follow-up blood tests and scans. I still deal with  emotional issues knowing it can come back. It feels like I have a cloud over my head. Right now while I have no evidence of disease it isn't raining. I deal with cognitive issues which has slowed down how I process information . I need to write things down or I will forget to do things or I will just  totally miss things I am supposed to be doing. I still deal with neuropathy issues and have been trying a number of  non-prescription ways to deal with it. So yes I am still in the battle.

I have never said  I have been cured.  Nope not even back in 2006 before I recurred. My doctors say I am living with a chronic illness which might "flare up" at any time.  For me this disease makes me feel a bit like Eeyore-  I have a cancer cloud over my head . It might not be raining now but it could in the future. What do I do about that cloud? I get involved in things that are not cancer related. I paint , I read, I take my dog to agility classes.

Let's get back to my journey. One of the definitions of journey is "the passage or progress from one stage to another."And that what my experience with cancer has been like . I've progressed from that newly diagnosed patient, through the patient in treatment , to the patient trying to find her new normal, to the patient who has a recurrence, to the patient in treatment again , to the patient once again trying to get back to normal. For me at least,  normal is the constantly changing terrain of being a person who was diagnosed with ovarian cancer .

What words do you use to describe your experience with ovarian cancer?

Dee
Every Day is a Blessing!