Sunday, September 28, 2014

As September Comes To An End

It is hard to believe that September 2014 is coming to an end. I was away for the first half of the month so I missed doing my usual awareness activities. 

I did though still hang my teal ribbon flag and join Graceful Hope for their walk. And on Thursday, I went to the Lunch and Learn at the Cancer Support Community of Central New Jersey. Dr Tchabo, Atlantic Health, spoke about the latest research and treatments for ovarian cancer, cervical cancer and uterine cancer. Although I missed a few events, I experienced a lot of what September as ovarian cancer awareness month means to a survivor- learning about the disease, raising awareness, honoring fellow teal sisters and remembering the lives cut short by the disease.

This morning I was thinking to myself how things have changed in the past 9 years. It has been a gradual change but I think a change for the better. Teal ribbons on trees are no longer rare thanks to thousands of  Turn the Towns Teal Foundation volunteers throughout the state and country. This year more news channels had segments focusing on ovarian cancer like this segment on channel 7 featuring my friend, Valisia LeKae.

More newspapers throughout the country shared stories about walks and focused on stories of survivors. 
Kaleidoscope of Hope Avon, NJ Walk- photo:J. Flaherty
Buildings and bridges in places like Philadephia, Birmingham, Huntsville and around the US were bathed in teal lights. 
Boathouse Row Philadelphia, PA - photo Sandy Rollman Ovarian Cancer Foundation
Even with this awareness the 5 year relative survival rate (SEER data) for ovarian cancer is 44.6% and for women with late stage disease the rate drops to 27%. 

What can I do? What can you do? September may come to a close but I will not stop raising awareness of this disease. I hope you won't stop either. I will continue sharing information about symptoms. I will continue to stress that women, diagnosed with ovarian cancer, be treated by gynecologic oncologists. I will still tell women that every woman is a risk. And I will continue all year long to advocate for more funding for ovarian cancer.

In another 9 years I want to be able to write "The 5 year relative survival rate for ovarian cancer has risen dramatically from  44.6% to over 80% ". 

Every Day is a Blessing! 

Sunday, September 21, 2014

Erika's Dream - A GRACEful Hope Walk

I have been busy for much of the month of September and have not been able to take part in many of the local Ovarian Cancer Awareness Month activities. So when Margaret invited me to the GRACEful Hope 1st Annual Walk I jumped at the chance to join her and the Rocha family.

I first met Margaret, Sergio and the rest of GRACEful Hope at their 2nd Annual Benefit in 2012. They invited me to share my story and it was a very emotional experience.( You can read about it here.)  Yesterday, the temperatures were perfect for a walk and it was wonderful to see the walk path lined with teal ribbons and balloons in Warinaco Park, Roselle, NJ.

We had pre-registered so we picked up our gift bags and t-shirts. The bags were filled with info about ovarian cancer and cancer research. After putting on the walk shirt I filled out the" In Suppport of" and "In Memory Signs"and Nick pinned them on my shirt. I walked in Memory of Grace, Erika, Shari, Stella and the ladies of my CINJ support group who died because of a gynecologic cancer. After the welcome speeches by Roselle Mayor Jamal Holley, Assemblywoman Quijano, and a Union County Freeholder Sergio Granados and a moving a capella rendition of the National Anthem, the walk that Erika had dreamed of began.

The path lead you around the park , past the lake, ball fields and playgrounds. I teared-up a few times   during the day, as I finished the walk feeling blessed to still be alive after being in treatment twice for the disease and when they asked for survivors to step forward.  It was wonderful to be able to catch up with other survivors Corinne, Dores, Tina, Jill, Jes and Terry.

GRACEful Hope expected 100-200 people at the event and there were over 500 participants. That is a testament to the wide reach of GRACEful Hope's efforts. Thank you GRACEful Hope for all you do to raise awareness and funds for research. You can find out more about future events by following them on Facebook.

Every Day is a Blessing!

Sunday, September 14, 2014

MedX - A Place for Conversations

A week ago I was still in the midst of experiencing Stanford MedX. MedX was a conference like no other conference I had ever attended as an ovarian cancer survivor and research advocate. In the words of Larry Chu, MD executive director of MedX , “MedX seeks to unite all health care stakeholders in a conversation about the future of medicine.” I saw those conversations taking place every day of the conference. There were conversations between people who worked in the pharmaceutical industry and patients, physicians and patients, caregivers and designers, and patients and engineers. They didn’t just take place on stage or in the workshops but in the hallways at Stanford, on the benches outside during lunch and break and at the hotels where participants stayed.

I was lucky to have conversations with people I knew from the twitter world and the blogosphere by the pool at the Sheraton where I was staying. I was thrilled to meet and have lunch with Dr. Ann Becker-Shutte, who is the mental health moderator for the #gyncsm chat/ community that I moderate. She had conversations on stage, in workshops and in the halls of Stanford about depression and chronic disease. I had conversations with high schooler Jack Andraka (@jackandraka) who invented an inexpensive cancer detection test , Susannah Fox (@SusannahFox) whose website I have been reading for a long time, Marie Ennis-O’Connor (@JBBC ) whose excellent advice about twitter I have followed and Dr Peter Yu (@YupOnc)president of ASCO about my experience of attending ASCO as an advocate.

One night after a busy conference day I had the pleasure of spending time with Colleen Young (@colleen_young, #hcsmcs) , Janet Freeman- Daily(@JFreemanDaily, #LCSM), Annette McKinnon( @anetto, and Meredith Gould (@MeredithGould, ) and Ann. As online health care community leaders we shared ideas about how to better serve and reach our communities. After meeting these women in person I know that this is one conversation that will continue.
Sharing ideas and relaxing by the pool 

I had different types of conversations with other e-patients. I learned the best way to attend MedX  and how to not be nervous on stage from the e-patient advisors. My room mate, Meredith Hurston (@meredithhurston), and I had some fun and some serious conversations before we collapsed from sheer exhaustion after a busy day at the conference. When I spoke to Matt Dudley, I told him I was moved to tears by his Ignite talk. There were hugs with other patients when they finished their presentations when words seemed inefficient. Having a niece with Type 1 diabetes made it easy to strike up a conversation with the e-patients who had diabetes. And these are only a few of the interactions I had.

I also had conversations with the reps from the 3-d printing companies. I am amazed at the quality and usability of the products those printers produce. I spoke with Barrett Larson (@Barrett_Larson), Leaf Healthcare about his device designed to monitor patients and signal a change in position to prevent bedsores.  This made me wonder about  about how it could be used for Alzheimers patients so we talked about that too. I spoke to Tal Givoly  (@givoly), Medvizor, about the inclusion of gyncecologic  Cancers on the Medvizor website. And I spoke to Joseph Kim (@JoPeKim), Eli Lilly, regarding ways to increase the participation of patients in clinical trials.

I learned information about other chronic illnesses that I might never have known had I not attended MedX such as what difficulties other patients have functioning at work or adjusting to things when first going to college or getting data from instruments that record blood sugar. I also learned about the difficulties physicians face when given only 15 minutes to see a patient. 

This is just a snippet of the hundreds of conversations I had at MedX. It does not really do justice to the wonderful interactions and things I learned but I hope it provides a picture of how conversations can affect the future of medicine – one conversation at a time. I know the conversations I have had will stay with me for a long time.  

Every Day is a Blessing! 

Tuesday, September 9, 2014

Design Thinking and Health Care- My MedX IDEO Challenge Experience

Earlier this year I was chosen to be a MedX e-patient delegate and participate in the IDEO Challenge.  During the Challenge an e-patient team member brings a problem they need solved to a team of researchers, physicians, other health care providers, anthropologists and designers . Each problem statement begins with the words "How might we...?".  I knew this was something I wanted to do. I love problem solving and enjoyed creating products when I worked as an engineer.  But at the same time I was a bit nervous about how we could accomplish anything in one day.

Before we met in person, Liza Bernstein ( @itsthebunk) a MedX Patient Advisor and Challenge participant gathered the other Challenge e-patients  Alan Brewington (@abrewi3010), Doug Kanter ( @dougkanter), Annette McKinnon (@anetto),  IDEO founder Dennis Boyle (@dennisjboyle) and myself for multiple Google Hangouts. We had a chance to meet each other and learn what to expect from the day. We had homework to do too. We were asked to read books on Design Thinking and articles about how design thinking has solved problems in business and education. We were also asked to develop 4-5 of our very own "How might We...?" statements related to our health care. When we all got together at IDEO headquarters on Thursday we were ready  hit the ground running.

The day began with a tour of the IDEO facilities and a review of the design thinking process. I was introduced to my team members as well as Ariana and Jayant from IDEO. They asked me to tell my story about my experience as an ovarian cancer patient and survivor. Once they knew my background, I shared the four "How Might We"" (HMW) statements I had developed for the day. As it turns out the initial HMW statement that I used on my MedX application didn't make the cut for my personal list that day.

What followed may be one of the most patient centered experiences I have ever had. The team members asked me questions, lots and lots of questions about my treatment, how I felt at various times during my treatment, what it was like living with the possibility of a recurrence and even questions about the effect my disease had on my family. Many of these questions were about things my care team which I think it top notch had never thought to ask me. Most importantly my team listened. They didn't judge.  They were able to keep their pre-concieved notions on how I might feel or handle a situation out of the conversation. Sometimes we got bogged down in discussing which word would best express what I wanted to say but we stayed on track most of the time. As my team members listened, they jotted down quotes on Post-it notes using Sharpies and placed them on a white board.

The beginning of the  process.
 Eventually, we focused my needs on this final HMW statement.

HMW help cancer survivors understand what to expect after treatment ends. 

But there was more work to do. Next, came the brainstorming session where the sky was the limit. Every single member of the team brought ideas, once again on Post-it notes, to the discussion board. The board was covered with statements and drawings to solve my problem.The most difficult part at this stage was deciding as a team which ideas we should develop into a prototype. And you know what? All the team members turned to me and said, "What would satisfy your needs as a patient finishing treatment?".  "WOW, " I thought to myself, "This is a patient-centered process."

We combined a few components to answer my HMW problem. They included items for the doctor's office and for use at home.

  • An "I'm in Control" Box for tips from survivors and questions from patients (doctor's office).
  • An "I'm in Control" Bulletin Board( doctor's office) to share information and answer questions  from the box.
  • A Gift Box given to the patient on the last day of treatment containing a "Have No Fear" bracelet; a book of inspiration from other cancer patients; a temporary "I am in Control" tattoo and a patient newsletter. The newsletter contains a daily calendar for the first month after treatment which includes information about how the patient might feel (both physically and emotionally), what side-effects they might be experiencing, nutrition and exercise tips and when to call the doctor regarding symptoms etc. These newsletters with daily tips/ information would continue to be mailed home each month after treatment. 
  • For those patients with internet access they could opt to receive the information contained in the newsletter in an application for the computer or i-Pad. The patient may also choose to keep track of how they are feeling and any symptoms they are experiencing on the app. If they desire to, they can share this information with their doctor via e-mail. 
Some of the props / components to solve my HMW statement on our brainstorming board.

The last step of the day was to take the prototypes and developed a skit around a patient's last day of chemo. I played the patient while my team members played doctors and nurses in an oncology office setting. Everyone was pleased with the prototypes and the skit but none more than me. I was thrilled with what we had accomplished in 7 hours.

After experiencing the Challenge , I learned how much you can accomplish when all the team members know the design thinking process, are invested in making the process work and are guided by individuals who know and care about the process and outcome.

Here is my next HMW statement.

HMW facilitate design thinking in all aspects of patient care. 

A special thank you to Dennis, Ariana and Jayant from IDEO for sharing the IDEO facilities and their design thinking expertise with me. And a warm thank you to my team Simon, Rona, Javed, Andy and Lisette for being part of my team and for listening so closely to my story and needs. I couldn't ask for better team members.
Some of the members of my Ideo Challenge team and I

Every Day is a Blessing!

Tuesday, September 2, 2014

Ovarian Cancer Awareness Month - Yes, there are symptoms

In the United States September is designated Ovarian Cancer Awareness Month.

Nine years ago I had just started chemotherapy for Stage 3b Ovarian Cancer. Back then I didn't know very much about ovarian cancer and the symptom consensus statement (2007) hadn't been written yet.

Today many organizations like the national organizations- OCNA, NOCC, OCRF as well as numerous smaller foundations are concentrating on sharing the symptoms of ovarian cancer with women in their communities.

Just in case you miss some of those incredible awareness campaigns,  the symptoms of ovarian cancer are:

  • Bloating
  • Pelvic / abdominal pain
  • Feeling full/ difficulty eating
  • Frequent urination

Other symptoms include fatigue, back pain, constipation and menstrual irregularity.

If you experience symptoms for more than 2 weeks please see your gynecologist.

Every Day is a Blessing!