Finding our WAZE

I haven't written a blog post in quite some time. It seems that life got in the way of my writing. Then, once I had time,  I couldn't seem to find the spark to get me writing, until yesterday. 

We were heading out to an appointment and set up Carplay to use Waze on the built in screen in my husband's car. That got me thinking about how I found my way to different places when I first learned how to drive. This was many years ago, so what follows might not make much sense to some of my readers and for others - yes, we are that old! 

I would ask my Dad for one of his ESSO road maps.  I'd look up the street coordinates and using  the rows and columns, find my destination. Then I would plan my route. I'd usually write down the directions -  Take Route 22 till Route 82 and go north etc. I would bring those notes in the car with me and off I went. I tried to gauge how long it would take based on how far away my destination was. If there was road work I'd just have to hope they had detour signs telling me where to go. And if there was traffic, I'd just sit in it. I wouldn't take other roads because I wasn't sure if they would take me closer or further from destination. 

Yesterday process for directions was different. We plugged in the address in the app and the screen in the car  highlighted our route in blue on a map as a voice gave us directions. The screen showed us our speed and our arrival time. As we drove, I saw so many other Waze users ( cute little icons)close to our route. Most were getting on or off the NJ Turnpike. Then the app gave us notifications about two cars on the shoulder of the road. These notifications came way before we even saw the vehicles. This happens because other Waze users tell the app they just passed a disabled car on the shoulder or they saw a police car.  The app also told us how far it was to our next turn. And soon it told us we had arrived at our destination on the right. 

Now you might ask why am I talking about directions and traffic alert applications.  What did this have to do with cancer? Over the past 20 years, I have gone from reading books about ovarian cancer, seeing brochures about peer support programs in my gyn oncs office and looking at flyers about support groups on the bulletin board in the waiting room. Just like using a paper map to find a location. 

Today, I read published journal articles about ovarian cancer online the day they are published.  I interact with fellow survivors and health care professionals on various social media platforms from Inspire and Smart Patients to Facebook, X and BlueSky. The ability to find support and information online is like those fellow Waze drivers giving me an update of traffic ahead. Those drivers have already experienced the traffic accident and can warn me of what lies ahead. Just as there are fellow cancer survivors who can act as a "driver" to tell me what side effects to expect when in chemo, what it is like being in a clinical trial or how important it is to have genetic testing.  

I know we do have cancer centers and organizations that offer resources and support such as  OCRA, FWC, SHARE, FORCE, Cancer Hope Network, and others. But are those resources readily available to all women with a gynecologic cancer as easily as those drivers on Waze can warn me of cars on the shoulder?  Or are women turning to AI or Dr Google to find answers?   We all know that some sources can be misleading and offer solutions that may even be harmful. 

So lets all make an effort to have information available for women diagnosed with gyn cancers and make sure that information is from reliable and accurate sources.  We can help "drive " and support the experience of women with cancer. 

 

Dee 

Every Day is a Blessing  

 

 

 

Chemo Angels

Last week I heard about Chemo Angels. Below is some information they provided me about their program. 

The Chemo Angels program offers support to those who find themselves battling a cancer diagnosis and undergoing IV chemo treatment. 

     The angel volunteers support their “buddy” throughout their journey with weekly cards, uplifting messages, supportive words and lots of positive energy. The encouragement the Angels provide helps give patients the comfort and confidence of knowing they are not alone in their fight. 

     The goal of Chemo Angels is to help fuel a positive attitude and aid in the road to recovery.  

    For more information and to submit an application, please visit the web site at www.chemoangels.com

    Some recent 'graduates' of the program have shared these comments:

• " Thank you for your wonderful program - it was a great support during difficult times " (from E.P.)
• " Thank you so much!! I truly appreciate you and the angels!!! I don't know what I would've done without you all.  " (from S.S.)
• 
  
• "I would like to thank your organization and the "chemo angels" who took their time to write to me.
• It was very much appreciated at a difficult time" (from D.R.)
• " Thank you so much! Please let my Angels know how much I was uplifted by their cards and gifts." (from P.L.)
• " Thank you so much for allowing me to be the recipient of your program. My two angels were wonderful. It certainly was uplifting on my journey thru chemo!" (from D.B.)
• " Thank you for everything.  It has been an amazing experience." (from N.L.)
• " Thank you so much for this program which is so uplifting." (from D.B.)
• " Please thank both of the ladies. It was helpful to have a friendly note & inspiring prayer from them." (from E.U.)

I know when I was in chemo I appreciated every card and gift that arrived in the mail. It made me feel I had many people on my side. So check out  www.chemoangels.com whether you are a patient who would love support. Or if you are someone who would like to be an angel for a patient. All cancers types are as long as you are getting IV Chemo. 

Dee 

Every Day is a Blessing!

Impact of Digital Info & Patient Support Networks 2017

Healthline recently release the 2017 Cancer State of Cancer Report: Impact of Digital Info & Patient Support Networks. The Report provided the results of a survey of cancer patients, survivors and caregivers regarding their use of online resources for information and support. They surveyed 1500 people over the age of 18 who were diagnosed with cancer or a caregiver of someone with cancer.

The key findings are listed below.

• 89 percent of cancer patients and caregivers go online for information related to cancer.
• 49 percent of millennials go online for information the same day they receive a cancer diagnosis.
• 73 percent of millennials join an online cancer community after diagnosis — three times more than baby boomers do (23 percent).
• Emotional support is the no. 1 benefit of joining an online or in-person cancer support group, but millennials also report they’re valuable for helping them make treatment decisions.
• Millennials place a higher degree of trust in online resources than older generations.
• Half of millennials also feel the information they encounter online causes more anxiety and fear.
• 78 percent agree that the internet empowers cancer patients and caregivers to make more informed decisions and cope with fear and anxiety (71 percent).
• Boomers value their clinical care team more than Generation X or millennials do, but millennials are the most likely generation to prefer to defer to their clinical team to make treatment decisions (48 percent). 62 percent of boomers and Gen Xers prefer shared decision-making.
• About half of cancer survivors or their caregivers stay engaged in online support groups to track long-term side effects (64 percent), because they fear recurrence (49 percent), and for emotional support (47 percent).
• There’s a stark difference in the behavior of survivors by generation, with 59 percent of millennials, 51 percent of Gen Xers, and 37 percent of boomers staying engaged in groups.

The Report is divided into 13 sections such as Cancer Support Groups, Health Privacy, Social Media, Trusting Internet Info, etc. You can read the sections you are interested in or the entire report, like I did, at https://www.healthline.com/health/state-of-cancer .

I found the report reflected the use of the internet by age group that I have observed from my time as co-founder/ co-moderator of the #gyncsm Twitter Community. My only comment would be regarding the report's use of the term community versus group. They separate online communities ( Inspire and Smart Patients) from Communities found on Twitter - which they call groups. Yes there is a difference in terms of privacy but I believe if you use the definition of community - "a body of persons of common ideas scattered through a larger society" then the groups on Twitter are in fact communities. 

Enjoy your read.

Dee
Every Day is a Blessing!

Nine Years Ago

Has it really been nine years? I never thought when I started this blog on December 30, 2007 that I would be writing it so many years later. But here I am so here I write.

This year was not my most productive - this is my 41st post of the year. That is an average of only 3.4 posts per month.  In July I only wrote one post. In June,  I posted more than three because I couldn't wait to share all the research news I heard at the ASCO annual meeting. Attending that meeting as a survivor/ research advocate is a real privilege and I recommend that if you are a research advocate you apply for a scholarship to attend. Then in November I  tried the WEGOHealth Health Activist Writers Month Challenge but I ended up only writing seven posts. But I enjoyed the prompts that I did respond to.

My most popular posts of 2016 were:

A Rudderless Ship

Apr 26, 2016

The Days of ASCO- Liquid Biopsies

Jun 13, 2016

Between a Rock and Hard Place - Surveillance after...

Aug 24, 2016

So why did I blog less this year than any of the previous 8 years? I think it is due to an increase in my advocacy work over the past 12 months. I continue to  co-moderate the #gyncsm chat  (2nd Wed. of the month 9pm ET) and post on the communities blog (http://gyncsm.blogspot.com/).  This year we ran a survey so I worked with Christina ( @btrfly12) developing and analyzing the data from that survey to guide our future chats.We draft questions, invite guests, develop resources and promote this monthly chat as well as sharing on Twitter important developments of interest to the gynecologic cancer community on a daily basis. 

As a member of the  Board of the Kaleidoscope of Hope Ovarian Cancer Foundation, which raises funds for ovarian cancer research I oversee the social media (Facebook, Twitter) and the Foundation's website content.  I also volunteer with ASCO, serving as a patient representative on a tumor board and guideline panels.  Then I spent time in October working on a presentation and attending the AZ Patient Summit in Portugal. 

And of course time with family( always my first priority)  cut into the time I would spend writing blog posts. There are times I question whether or not I should continue writing this blog.  But I always come back to my original goal for the blog - to help other women diagnosed with ovarian cancer. Even if I help and support one woman a year I feel I've accomplished something.

So I will keep on writing.

Dee
Every Day is a Blessing! 

Supporting Those Diagnosed with Cancer - Cancer Hope Network Chrysalis Gala

Last night at Cancer Hope Network's (CHN) Chrysalis Gala, I had the honor of telling my story as an ovarian cancer survivor and a CHN support volunteer . Cancer Hope Network provides one-on-one peer phone support for newly diagnosed or recurrent cancer patients and their caregivers. I have been a support volunteer for over seven years now. Last night at the Hanover Marriott many of CHN's supporters of the past 30+ years were present to celebrate the support provided and to raise funds to continue the support they provide to cancer patients.

Below are the main points I shared with the audience.

2005 started out as a pretty good year. I was looking forward to  celebrating my 50^th birthday at DisneyWorld with family and friends -12 in all. In late May during my annual visit with my gynecologist I mentioned a pain I had on the left side of my abdomen. In early June after a transvaginal ultrasound the pain got worse and I ended up in the ER. After an  MRI  I learned my ovaries were enlarged. I was quickly referred to the gynecologic oncologists at the Rutgers Cancer Institute of NJ. 

On July 29th one month after my birthday my world changed. I woke up from surgery and to learn I had stage 3B ovarian cancer. I went into that surgery knowing there was a chance it could ovarian cancer but up to that point I had been more fearful of being diagnosed with breast cancer. My sister passed away from breast cancer at the age of 47.

2 weeks after that major debulking surgery. I started chemotherapy. I chose to be part of a clinical trial. The trial added selenium to the standard of care - carboplatin and taxol. It was tough loosing my hair and developing neuropathy but what I was most upset about was the fact that I had not met one other woman with ovarian cancer. What made it worse - any time I mentioned ovarian cancer the response was – Oh Gilda Radner  who played Roseanne Roseannadanna on Sat Night live have ovarian cancer. Yes– she had that disease. But she didn’t live. 
  
I also knew the statistics about women diagnosed with late stage ovarian cancer. Only 30% lived 5 years. I wanted to be in that 30% and I needed to talk to someone who had the disease and lived.

When I saw a brochure for Cancer Hope Network in the waiting room of my gynecologic oncologist’s I picked it up and brought it home. I hesitated at first to call. At the time I wasn’t too keen on calling anyone and talking about ovarian cancer. But one afternoon as I laid in bed too tired to get up I went ahead and called. 

I told the person who answered the phone that I just needed to talk to someone who had ovarian cancer and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer named Judy. I spent the next half hour talking to a women diagnosed with stage 3b OC, she lived in NJ, she had the same surgery and chemotherapy ,her son worked at the college my son was attending, and even better Judy was a 5 year survivor. It was wonderful. I was not alone. This meant I could survive too!
 
When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did the training and within a week or two I was talking to other women with ovarian cancer. I did that until I recurred on my liver and spleen in 2008 and had to have surgery and more chemotherapy I had to take a break. But once treatment was done I was back on the phone able to offer a perspective of being a survivor of recurrent ovarian cancer. I have been volunteering ever since.
 
I have spoken to women from NY, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to small community cancer centers or their local oncologists. I have talked to women who are a short ride from their doctor’s offices and infusion centers.  And also women who drove eight hours or took a plane and stayed overnight at  hotels when they had treatment. They did all this to get their life saving treatments.

There were women who went to in person support groups and others that took part in online groups. But each and every one of them wanted to talk one –on –one with another survivor who understood. At some point in most of the conversations I have had after I have say  "I felt that way too" the reply has always been the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network for allowing me to provide hope and to give back to other women the hope and support you gave to me.   

I look forward to continuing to volunteer with CHN and to support women diagnosed with ovarian cancer for many years to come.

Dee
Every Day is a Blessing! Blessed to have found CHN when I was initially diagnosed.

Paying it Forward- 7 years

This arrived in the mail from Cancer Hope Network .

I love the sentiment on the front. Then I opened it and saw that it was a thank-you for the seven years I have been a support volunteer. Wow! I remarked to my husband that it sure hasn't seemed like seven years.

Back in 2005 I was upset. I knew the statistics about women diagnosed with late stage ovarian cancer. Jeez I knew that Gilda Radner died from that disease. I just wanted to talk to someone who had the disease and lived. Heck I didn't even meet any women in my cancer center with the disease. So when I saw a brochure for Cancer Hope Network in the waiting room I picked it up and brought it home. I hesitated at first to call. I'm not too keen on cold calling someone. But one afternoon as I sat in bed I went ahead and called. I told the person who answered that I just needed to talk to someone who had been in my situation and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer. I spent the next half hour talking to a women diagnosed with 3b, lived in my state,  had the same chemotherapy and surgery and was a 5 year survivor. It was wonderful. I was not alone. I could survive too!

When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did training and within a week or two I was talking to other women with ovarian cancer. I have been volunteering ever since. Although I did take a break when I recurred and was back in treatment but once treatment was done I was back on the phone.

I have spoken to women from NYC, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to community cancer centers and oncologists. I have talked to women who are a short ride from their doctor and center and those that drive eight hours or take a plane and stay at hotels when then go for treatment.But each and every time I remark "I felt that way too" the reply is the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network and all their volunteers for supporting those diagnosed with cancer. If you are newly diagnosed with any cancer or a caregiver for someone diagnosed with cancer you may call( 1-800-552-4366 )  or visit the Cancer Hope Network website online  to be matched with a survivor.

Dee
 Every Day is a Blessing !

I feel so ...

I know I haven't posted in a while. Actually, I've been working on this post for a while editing and adding to it. 

A few weeks ago a very dear friend's husband passed away from prostate cancer. I knew he had no treatment options left but it still came as a shock to me. He had been a vibrant 61 year old who had retired to spend time with his wife, children and grandchildren.

It sure didn't seem fair. Cancer does that - it takes good people. Don't get me wrong I am sure it takes the lives of not so great people too. But it is torture for those with cancer and those on the journey with us.

My first thought when I heard the news was what it would be like for me if my rock, my husband of 37 years, passed away.  I don't know how I would handle it. How could I get through a funeral. And then what would happen the first time I couldn't open a jar or move a piece of furniture ? Or what happens when I feel sick and still have to walk Amber in the rain or snow? Or how do I make meals for one?

But them another odd feeling came over me. How could I face my friend.  How could I, NED for 5 years since my recurrence face my friend. Would she look and me and think - why are you still here and my husband is gone?

I felt wary of going to the wake and seeing her for the first time since her husband's death. I hesitated getting out of the car and entering the funeral home. I  waited on line and finally reached her two sons. They called me by name gave me a hug and thanked me for coming. Then I moved over to my friend. She teared up - and so did I as we hugged and I told her how sorry I was. Then she told me that she prays for me every day because having cancer sucks.Yes, it sure does. But she wasn't angry at me and that made me feel so much better.

But I continued thinking about my friend and her husband and even mentioned them during my monthly gynecologic cancer support group. When it came to my turn to update everyone I told the group how unnerving it was for me, a survivor, to face my friend when her husband died. Then I asked the women, a majority are currently in treatment, if it was OK for them to hear my reports on being NED.  At times I felt guilty about being in good health among all these women struggling to make treatment decisions and dealing with side effects. Every single one of them said they were happy I was at the group and that my presence gave them hope. Those words brought tears to my eyes and I could once again bury my survivor's guilt for a little while longer.

Cancer changes your life and your outlook on life in more ways than you can imagine.

Dee
Every Day is a Blessing!

"Outshine"- A Must Read

Last month, I won a Wego Health contest in which the prize was an autographed copy of " Outshine An Ovarian Cancer Memoir "by Karen Ingalls, a stage II ovarian cancer survivor. Due to a very busy Christmas holiday I didn't get a chance to get around to reading it until New Years Day.

"Outshine" is a well written, easy to read book. For me, reading the book was as if I was having a coffee and chatting with a woman from my support group. Ms Ingall's not only shares her story with ovarian cancer but also provides information about the symptoms of the disease, diagnostic tests ( CT, MRI, PET) and treatment options. Helpful for newly diagnosed women is her advice regarding how she handled side effects of chemotherapy through standard medicine and complimentary medicine. She also discusses the important role her husband, family and friends played in aiding in her recovery. Ms Ingalls does not leave out the pain and anguish.  I could totally relate to what she was going through.  Rather she offers excellent advice on how she dealt with not only the emotional issues but also the physical issues of her diagnosis. 

This may seem odd but I couldn't wait to get to the end of each chapter. Why was I in such a rush? Because I couldn't wait to read the poem, scripture verse , saying or affirmation related to the chapter. Here is the one you will find at the end of Ch 15:

We can turn our backs on tomorrow
And live for yesterday.
Or we can be happy for tomorrow
Because of yesterday.- Anonymous

Over the past 9 years I've read a number of books by or about women diagnosed with ovarian cancer such as The Light Within  and Memoir of a Debulked Woman as well as other books by and for cancer survivors. "Outshine" is one of my favorites and its contents are of value to women diagnosed with the disease as well as their caregivers. I will be sure to share the book with women in my support group.

You may order the book on Amazon. More information about the author and the book may be found at the book's website.

Dee
Every Day is a Blessing! Blessed to have had the opportunity to read "Outshine".

205 years of Survivorship

205 Years!

That is how many years of ovarian cancer survivorship was present at a luncheon at the Crowne Plaza in King of Prussia, Pennsylvania yesterday.

Since the early 2000's,  a group of ovarian cancer survivors who met online (ACOR, Inspire, Facebook, Smart Patients) or at the OCNA conference,  gathered together in one of the women's home town for a fun weekend get together. The group has met in a variety of locations from Canada, to Missouri, to Kentucky, and Maryland.  This year when I learned the get together was in Pennsylvania  a little over an hour or so from my house I knew I had to attend and meet so many woman I admire.

So off I drove yesterday morning under grey and stormy clouds to have lunch with my teal sisters at the Annual Ovarian Cancer Survivor Friends Get Together. The Luncheon was sponsored by the Sandy Rollman Ovarian Cancer Foundation as part of their mission to bring survivors together.  Robin Cohen CEO and co-founder of the Foundation was there to welcome all the women to the luncheon and the Philly area.The food offered a taste of Philly from Hoagies to Cheese Steak Sandwiches to Tastycakes.  Thank you Robin and SROCF .

The food was delicious but the best part of this day was meeting so many wonderful survivors in person. They came from near - Pennsylvania and New Jersey and far - Maryland, Kentucky and Illinois and Kansas.  There were survivors who have helped to raise awareness of the disease in unique ways -Teal Toes, acted as patient reviewers of DOD grants, presented posters at AACR and taught medical students through Survivors Teaching Students. Most of the women have been there online offering support and prayers for others diagnosed with the disease. As we ate we talked about hair loss, neuropathy, clinical trials and tumor storage. We questioned what makes survivors of 5+ years different from other women diagnosed with the disease. We laughed.  And as we looked at photos of past get togethers we teared up remembering women who were no longer with us. In that room in PA were some of the most active and inspiring ovarian cancer e-patients in the country.

Before the day ended I got to do something I have wanted to do for a long time. I went up to Helen, a 20+ year survivor of ovarian cancer, gave her a hug and told her "Thank- you"for being there for me when I was in treatment. She responded to the very first post I wrote on the ACOR listserv in 2005.

I would never have been able to say thank you in person without the efforts of Anna Marie and Yi who helped to organize the event. Thanks Yi and Anna Marie.

I can't wait to see all of you next year.

Dee
Every Day is a Blessing !!!
And I am truly blessed to have met Annamarie, Annie, Barbara, Carey, Carol, Christine,  Cindy, Cynthia, Helen, Jan, Judith, Nan, Pat, Susan,Teresa, Terri, Yi, Yi from PA

Elixir Fund Registry- A Patient / Caregivers Wish List

Just about four years ago at a Mercer County Cancer Coalition (now called the Hunterdon/Mercer Chronic Disease Coalitio) meeting I meeting  Meg McQuarrie from the Elixir Fund.

The Elixir Fund "provides comfort and support to cancer patients and their caregivers. "Their goal is to reduce the stress of treatment and provide support to patients and their caregivers so they can take a break from cancer. They get their inspiration from the cancer journey of Meg's brother, Kevin.

Yesterday, Meg and I met to discuss the latest project of the Fund- the Elixir Fund Registry. This project, similar to a bridal registry, is a way for family and friends to provide support ( emotional and physical) to their loved ones who are in treatment as well as their caregivers. Patients and caregivers can make a wish list for things they would love to have or things they would like to do to make their treatment time easier. The items on the list are varied from a  massage, to meals delivered to a patients home, help with putting on makeup, transportation to appointments, yoga classes or it can be a custom wish. Many local businesses have agreed to help with providing the services. The registry will be online and initially will  involve cancer patients/ caregivers who reside in NJ.

The Elixir Fund Registry is ready to be tested and the Fund is looking for people who have experience as a cancer patient, caregiver or health care provider ( such as a nurse or social worker) to test out the site and provide feedback to the Fund so they can insure that the program meets the needs of cancer patients and caregivers. I am so happy to see a patients centered approach to designing the program. Program testing is supported by Eli Lilly.

Meg allowed me to do a test run of the Registry and it is easy to set up and use.

Please contact Meg by calling 800-494-9228 or e-mailing her at  meg@elixirfund.org

Dee
Every Day is a Blessing!

Guest Bloggers: Marc and Maya Silver, Authors of "My Parent Has Cancer and It Really Sucks"

I am so pleased to offer my readers this guest post by Marc and Maya Silver. Marc and Maya are the authors of  "My Parent has Cancer and It Really Sucks ~ Real Life Advice From Real Life Teens" which I recently read.  

My son was in college and my daughter was a college graduate when I was diagnosed but my husband and I were still worried about the effect my disease would have on them. That is the reason why when I started reading the book I decided to start in the back of the book and read Appendix C - The Parent's Guide first. As I read the section I thought to myself - yup that is what I would do or I've heard other survivors say that is how they told their teen. Great advice for parents. Then it was time to get into the meat of the book. My favorite chapters were  Cancer 101 , Parentification, Dealing with Stress, Facing a Dire Prognosis and  The New  Normal: Life After Cancer. The book is filled with advice and stories from teens to teens. And  for those who are looking for some advice from professionals ( social workers/ therapists/ teachers) you will find helpful tips nestled into each chapter.  I highly recommend this book for parents and teens and I hope you enjoy this guest post by Marc and Maya Silver.

How to Have the First Cancer Talk with Your Teen

You think it’s hard talking about the birds and the bees? That’s nothing compared to the c-word: cancer.

You can delay the first talk a little bit. But just a little bit. Maybe you want to get your information together. My wife and I found out on a Friday and waited until the following Tuesday, after a visit to the surgeon, so we could have more information to pass on. Since it was the weekend before the school year started, we didn’t want to add to the kids’ anxiety over the first day of classes. And to be honest, we needed a little time to face our own fears and emotions before sharing the news.

But tell them we did, in the car, when we picked them up from school. We gave it to them straight: Mom has breast cancer, that will definitely mean surgery and probably chemotherapy and radiation treatments, and we’ll tell you what’s going on as we find out more. But it wasn’t easy. We were both holding back tears.

As we wrote our guide for teens, My Parent Has Cancer and It Really Sucks, we asked many experts: How do you have that first talk? Here’s some of the advice they shared.

You can’t put it better than psychologist Richard Ogden, whose wife was diagnosed with breast cancer: “Our guiding principle was to say it clearly and straightforwardly, without hedging, without trying to whitewash. To say what we know, to say it simply. The tightrope is between giving the information we feel needs to be given and not giving more information than is necessary.”

So if you’re waiting for certain test results and feeling a bit anxious, you don’t need to share all that with the kids. Wait until you get the results, then let them know what’s up.

How do you know if you gave the right amount of info? Ask the kids after a day or so: Did we answer all your questions? Do you have any new questions? They might ask a tough medical question. If you don’t know the answer, you can say, “That’s a good one. I’m going to ask the doctor for the answer on my next visit. Or the question might be: “Who’s going to take me to soccer practice?” And that’s a perfectly reasonable teen question, because teens are very wrapped up in their own world (kind of like adults). You might say: We can still manage it. Or: Let me check with a teammate’s parent to be a back-up driver just in case.

Above all, honesty is indeed the best policy. “My children have told me over the years the thing that helped them most was that I was always honest,” says physician Wendy Harpham, who was diagnosed with lymphoma in 1990 and has had seven recurrences. “They never worried: Is there something else going on, is she telling me the whole story?”

If you’re the kind of family that has family meetings regularly, then you call a meeting. If you’re a family that never has meetings, your kids might be weirded out if you announce that for the first time, you’re about to have an Important Familiar Confab in two hours. You might try using a family meal, or just call the kids together for a quick chat.

The car is also a good place to share news – no one can leave the premises and you don’t have to look each other in the eye, so conversation can flow.

Some families combined the bad news with an upbeat activity. After Tyler’s parents told him mom had breast cancer, Tyler recalls, “We started freaking out a little. To cheer everyone up, we just started to play a bunch of games.” Allison, 13, of Idaho, recalls: “They took me to Barnes & Noble and bought me a stuffed-animal deer and we sat down at Starbucks and they gave me cheesecake and they told me.” That’s a way of letting the kids know that life goes on, even after a cancer diagnosis, and you can still have fun as a family in spite of cancer.

Marc and Maya Silver are the authors of My Parent Has Cancer and It Really Sucks, the first guide for teens whose parents have been diagnosed with cancer. Marc Silver is an editor at National Geographic and author of Breast Cancer Husband. He lives in Chevy Chase, Maryland. His daughter, Maya Silver was 15 when her mom was diagnosed with triple negative breast cancer. Now 27, she is the winner of the Diane Vreuls Fiction Prize at Oberlin College and lives in Colorado. They are the authors of My Parent Has Cancer and It Really Sucks, the first guide especially for teens whose parents have cancer.

I hope you enjoyed this post and will find time to read the entire book. 

Dee

Every Day is a Blessing

In The News: Social Influences, Germline mutations and OCNA Conference materials

There were a few interesting research reports release the past week or so.

Social Influences on Clinical Outcomes of Patients with Ovarian Cancer
This research appeared in the Journal of Clinical Oncology.  The lead researchers were from the University of Iowa but included doctors from different institutions throughout the country. In this prospective study ( women were recruited for the study and followed ) they  looked at the relationship between support and long term survival among women with epithelial ovarian cancer. One hundred sixty eight patients were recruited for the study.  The statistical model used to analyze the data took into account stage, grade, histology and age .

Conclusion: Greater social support was associated with a lower likelihood of death. Fifty-nine percent of  women with a high level of social support were found to survive 4.70 years while those with minimal support survived a median of 3.35 years.

My Take: I find this study intriguing.  I would like to see this study done with a larger population


Germline BRA1 and BRCA2 Mutations in Ovarian Cancer:Utiltiy of a Histology-Based Referral strategy 

This Canadian Study ran from 2004 to 2009 and will be published in an upcoming issue of  Obstetrics and Gynecology.  The study recruited women with nonmucinous epithelial ovarian cancer , fallopian or primary peritoneal cancers and asked them to bank their tumors and receive genetic counseling. Family history was taken for each patient. One hundred thirty-one women participated. BRCA 1 and 2 mutations were found in twenty percent of the women and exclusively in women with high grade serous histology.

Conclusion: Germline mutations are associated with high-grade serous histology.  This suggests that all women with high grade serous ovarian cancer have genetic testing. This will improve detection rates and mutation carriers will be found that would not be found if only family history of breast and ovarian cancer is used.

My Take: Since the treatment of ovarian cancer for those with BRCA mutations can vary from those without the mutations this study strengthens the call for genetic testing of all women with high grade serous ovarian cancer.

OCNA Conference
The OCNA conference took place in early July in Washington ,DC.
Here is a link to the conference materials which include a number of interesting presentations related to research and treatment.


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!