Monday, September 15, 2014

"My Trifecta" - Joanie's Story












 

How did I end up at 44 diagnosed with stage IV ovarian, peritoneal, endometrial cancers: all primary, what I call a trifecta?

I had debulking surgery followed by continual chemotherapy and now 4 years later I have tried 21 different chemo protocol combos to keep the cancer stable. My message to you is simple, listen to your body. In 2009, I had heavy periods, family history of ovarian cancer, general gastro issues and most were explained with irritable bowel or perimenopause. I was the healthiest I had ever been. In December of 2009, I had a mammogram which showed enlarged axillary lymph nodes. This doctor felt a biopsy was necessary. The nodes came back as reactive. I questioned, reactive to what? More visits to the gynecologist who failed to do a transvaginal ultrasound and a ca125 blood test even though I had a family history of ovarian cancer. I insisted something was not quite right. Finally, my internist heard me and ordered a PET scan for “peace of mind”. Unfortunately, this was not the case and the radiologist mis-read my scan as lung cancer. I met with a thoracic surgeon who explained the surgery which included cracking my ribs etc…but said that if I was his wife, he would be more concerned with the pelvic area and recommended I see a gynecological oncologist/surgeon. It was now March 2010 and I met with numerous surgeons and ended up having my surgery at UCLA where I am now treated.

I cannot say I would have or should have done anything different.

My situation is what it is. My chronic condition of living with cancer is something that I have accepted, but not quietly. How have I continued for 4 years on chemo? I have a great support system of family and friends. I have a wonderful husband and a 12 year old son who motivate me every day to stay strong. I refuse to give up.

My philosophy is find the sunshine in every day and NEGU (never ever give up) #NEGU.

I have continued to have an amazing quality of life with some ups and downs. I have had chemo in Waikiki, went on a cruise to Greece with hand and foot syndrome caused by Doxil, and went on a cruise to the Caribbean, plus numerous other vacations with my family.
I encourage you to spread the word about gynecological cancers. Listen to your body and know the symptoms. They appear as whispers, but turn into screams. Don’t ignore the signs!
- Joanie Triestman


Read more about Joanie’s story: http://joanietri.wordpress.com/

Thank you Joanie for sharing your story and advice with all of us. 

We are saddened to report that Joanie passed away in May 2015. We are happy that she shared her story and insights with the #gyncsm community.

Dee
#gyncsm co-moderator

Read another survivor story: Tina, ovarian cancer survivor

Thursday, September 11, 2014

1st Anniversary Chat- Advocacy for Yourself and Others

September is the one year anniversary of the #gyncsm chat. Before providing the information about this month's chat, Christina and I would like to thank:
  • Our health care moderators: Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry J. Markham and Dr. Ann Becker-Shutte for their support, participation and guidance.
  • Dr. Matthew Katz for helping us write our Tweet Disclaimer, for responding to those first "Wish we had a community for gyn cancer survivors like #bcsm" tweets, and for continued input and guidance.
  • The #bcsm community for allowing us to model your community and join in your conversations. 
  • The Society of Gynecologic Oncologists for supporting this chat and spreading the word about our online community. 
  • OCNA for welcoming us as a Partner Member and sharing our tweets.
  • The gynecologic cancer survivors who have participated in our chats for sharing your experiences and supporting others diagnosed with your disease.  
  • The health care providers, cancer researchers and organizations who join us from near and far. Your insight is invaluable and your interest in your patients physical and emotional well-being should be mimicked by providers and researchers and organizations everywhere.
Without all of you the #gyncsm community would not have grown from two women interested in advocating for gyn cancer survivors to a vibrant strong community.

In an effort to get your feedback and suggestions we ask you to fill out the #gyncsm survey which can be found at https://www.surveymonkey.com/s/5QNDJ7K

This month's chat was about Advocating for Yourself and Others. We were joined by Globeathon (@globeathon) and ovarian cancer advocate Gwen Harding-Peets (@greenP11). We had 56 participants, 691 tweets in the hour and over 1.5M impressions.  The full transcript is available here.

The topics covered were:
T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

T2: What skills & tools do you need to be an effective advocate for yourself or your loved ones in the healthcare system? 

T3: What issues in the GYN cancer community do you think we need to draw attention to?

T4A: How can GYN cancer groups, especially #gyncsm & @globeathon, help you better advocate for yourself and others about GYN cancers?
T4B: What are the hurdles & barriers in in advocating for yourself and others & in raising GYN cancer awareness?

T5A: Pls share local/national/global patient advocacy groups you work w/ – include twitter name and/or website & location if you can 
T5B: Also share - How are you raising awareness about GYN cancers during this awareness month/year-round?

Next month's chat is on Recurrences and will be held on October 8, 2014 at 9pm EST.

We hope you can fill out our survey.

Resources:

Starbryge Health Online
http://starbrydge.com/

Google Alert for #ovariancancer

SHARE national helpline: 866-537-4273 @SHAREing 
http://www.sharecancersupport.org/share-new/

Support Connection
http://supportconnection.org/

@OCNA Advocacy at Home, Advocate Leader program & Research Advocate program 
http://www.ovariancancer.org/what-we-do/grassroots/

Peach Outreach - great advocacy group for endometrial cancer
http://peachoutreach.com/

@OCRF Woman to Woman Program
http://womantowoman.ocrf.org/


Foundation for Women's Cancer - Information, Toolkits, Campaigns
http://www.foundationforwomenscancer.org/
http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-Toolkit-2014.pdf
https://www.facebook.com/media/set/?set=a.825730620800713.1073741832.190565747650540&type=1

Government Sites
http://healthfinder.gov/
http://www.nlm.nih.gov/medlineplus/

#GotTeald someone today!
http://www.whyteal.org/got-teald/

Volley - Notes to Researchers
http://notestoresearchers.weebly.com/notes-to-researchers.html

@CancerAdvocay Legislative Advocacy Training Modules
http://www.canceradvocacy.org/cancer-advocacy/getting-started/

Yahoo group: OvarianCancerSupportCommunity

Linda Young Ovarian Cancer Support Program
https://www.facebook.com/LindaYoungOvarianCancerSupportProgram
 
Blogs:
Joanie Triestman http://joanietri.wordpress.com/
I Have Lynch syndrome http://www.ihavelynchsyndrome.com/

Other Organizations:
@PatientAdvocFou

Article links:
Study: Half 26-35yr women unable to identify vagina on a diagram
http://www.telegraph.co.uk/women/womens-health/11063825/Half-of-young-women-cant-locate-their-vaginas.html
Dispelling the Myths About Palliative Care
http://palliativeinpractice.org/2013/10/03/dispelling-the-myths-about-palliative-care/

See you next month!
Dee
Co-moderator