Thursday, May 28, 2015

Chicago, Here I Come!

Tomorrow I will be heading to Chicago for the American Society of Clinical Oncology (ASCO) Annual Meeting "Illumination and Innovation". I will be attending as a patient advocate and representing the #gyncsm( gynecologic cancer social media) Community on Twitter which I co-founded and co-moderate with Christina Lizaso.

I will be tweeting using the #gyncsm hashtag to keep the community up to date on the latest research news for those impacted by gynecologic cancers. Due to my diagnosis I admit in advance they there may be a heavy emphasis on ovarian cancer.

In order to spend my time efficiently,  I spent time the past few days finalizing my schedule. The meeting starts on Friday afternoon and ends on Tuesday afternoon. The  iPlanner on the meeting website made this planning a bit easier. I focused on the Gynecologic Cancer sessions (education and poster sessions) as well as the Patient & Survivor  and Health Services and Quality of Care sessions. There is an app for the meeting for my phone so I can log in at any time and see my schedule, maps of McCormick ( which is huge), places to eat, shuttle locations etc. You might wonder why planning ahead is so important. Well this conference is the largest  oncology conference in the world with well over 30,000 attendees. So with a packed scheduled and long walks between locations and let's not forget the Oncology Professional Hall it sure helps to have it mapped out in advance. There were so many presentations and posters to choose from: BRCA mutations and the genome atlas to managing treatment in older women to  medical diagnostics and immunotherapy just to name a few.

 The other added benefit of planning ahead is that it insures I won't miss the sessions/ posters presented by doctors I have met in the past or followed for years on Twitter. For example, I can't wait to see Dr Matthew Katz's poster on Disease-specific hashtags for online communication about cancer care. Dr Katz has been a supporter of #gyncsm community from its inception in 2013 and helped us with the Tweet Disclaimer on our blog. Another poster I don't want to miss is the one by Roisin O'Cearbhaill on Carboplatin hypersensitivity reactions in carboplatin treatment for recurrent ovarian cancer . I met Roisin a few years ago at a Kaleidoscope of Hope Foundation dinner where she received a grant for her research and having experienced a carboplatin reaction this is of particular interest to me.

I also have set aside time to meet up with other advocates in the Patient Advocate Lounge and look forward to the Tweet-up taking place on Saturday night. Evenings will be busy to with the dinners and receptions and catching up with friends from the Research Advocacy Network.

Be sure to check back frequently for updates from the meeting and if you are on Twitter be sure to follow #gyncsm and #ASCO15 for the latest news.

Lastly, I want to thank the Conquer Cancer Foundation whose support will make this trip and my meeting attendance possible.

Every Day is a Blessing!

Monday, May 18, 2015

Two Different Goodbyes

The past week was not a good one for me. Sadly though, it was not an unusual one for me as I approach 10 years of survivorship. Something very similar happened in 2012.

At my support group meeting on Tuesday I said goodbye to J. She shared with the group that her cancer had spread and after years of being in various treatments and clinical trials she had decided to stop. She was moving home to be with her mom in another state and would be leaving in about two weeks. She invited us all to make a trip to visit her. My heart ached as I watched her share her feelings with us. She is brave and strong and scared. I held back tears. And I did a good job until she left the room. 

I came home and sent and e-mail to fellow group member and friend, Linda. I told her how much I missed her at the meeting and asked how her treatments were going.  She didn't e-mail back but I thought that she was back in the hospital for another treatment.

On Thursday J texted me. She had just gotten off the phone with Linda's husband. Linda had passed away on Tuesday.

OMG! I couldn't believe it. Not another woman I had grown to care about taken too soon. I put my cell phone down and yelled "I hate this". My husband came over and hugged me as I cried. Memories came flooding back.

Linda and I had talked countless hours on the phone. She would call or text and ask me about trials.  We discussed parp inhibitors, surgery options and social security disability. We talked about our supportive husbands and the impact of our disease on our families.  I loved hearing her talk about the tap dance lessons she took and the recitals she participated in.  Over the 7 years we knew each other we attended a number of ovarian cancer awareness events. I finally got to meet her husband in person at a Survivors Day event last year.

Linda's  last text to me was before our April support group meeting. She told me it was ok for me to tell the group members about the secondary cancer she had, that she had been in the hospital and had broken her wrist. She finished her text with "I like you and trust you." I wrote back " I like you too. Hugs ". I will miss those phone calls and texts.

And... I will continue to text and e-mail J as she moves home and shares special times with her family. And I am hoping to make that trip to see her.

Every Day is a Blessing! 

Tuesday, May 5, 2015

Let's Think Global - World Ovarian Cancer Day May 8th

I frequently share stats and information about ovarian cancer in the US but I am going to go global and talk about World Ovarian Cancer Day (WOCD) which is Friday May 8th in 2015. The first WOCD was held in 2013.

I think this is so important that I've shared my story on the World Ovarian Cancer Day website and have taken the pledge to share information about the disease with at least 5 women.

You can find more information to participate in events held round the world or to share information about ovarian cancer in your local community on the WOCD website.

Here is what you need to know:

Worldwide, ovarian cancer has the lowest survival rate of any gynecologic cancer.
A quarter of a million women are diagnosed worldwide with ovarian cancer and the disease is responsible for one hundred forty thousand  deaths each year.
Only 45% of women diagnosed with ovarian cancer survive five years.
 There is no detection test for ovarian cancer !

The symptoms of ovarian cancer are similar to other less serious conditions but they are the same for women all over the world.

  • Bloating
  • Feeling full quickly
  • Abdominal pain
  • More frequent or painful urination.

Please share these symptoms with the women you know and their loved ones . Feel free to share the graphic above and use #WOCD when you tweet.

Thank you.

Every day is a Blessing!