Wednesday, December 31, 2014

Seven Years a Blogger

Yesterday, December 30th marked the seventh anniversary of writing this blog.

I started this blog back in December of 2007 because I wanted to  share my experience and information about ovarian cancer with other women diagnosed with the disease in NJ. At the time I was not sure I would live to see my 5th "cancerversary". But next year, 2015, I will celebrate my 10th "cancerversary". My blog has also grown and now reaches women in the US as well as internationally ( UK, Germany, Russia, Canada France, etc.)

Some of my most popular posts this year were:

I know this year I have not posted at the frequency I have posted in the past. One reason why has been my increased involvement with the #gyncsm community. In late 2013, Christina Lizaso and I founded the community for women diagnosed with gynecologic cancers as well as their caregivers and health care providers. You may find us on twitter at @gyncsm . We offer monthly chats on topics of interest to the community ( 2nd Wed of the month 9pm EST) . Christina and I research each topic we discuss, develop questions, find reliable resources for our followers as well as guest speakers. I also continue to write for our blog ( which provides info about each chat, links to transcripts and resources related to each topic. In addition to the chat information, I have posted about clinical trials, World Ovarian Cancer Day and reported on the results of a survey we did of #gyncsm followers. In October this year,  we also partnered with Smart Patients an online platform to offer a place for our community members to discuss our topics in more the 140 characters.

In addition to being a patient reviewer for PCORI , a Survivors Day Committee committee member, volunteer with the Kaleidoscope of Hope Foundation, and e-patient scholar at Stanford MedX I was  a busy wife, mom and grandma.

I look forward to continuing to blog (hopefully more frequently) in 2015.

I wish all my readers a very Happy and Healthy New Year!

Every Day is a Blessing!

Tuesday, December 23, 2014


 Wishing all of my readers JOY during this holiday season.

On Christmas Day. my home will be filled with my children and grandchildren. 
Their presence is the best gift of all!

Every Day is a Blessing!

Thursday, December 18, 2014

I'm Grateful For ...

Yesterday, I read a post in the ASCO Connection blog written by friend and #gyncsm chat Health Care Moderator,  Dr. Don Dizon. Dr. Dizon is a gynecologic oncologist at Massachusetts General Hospital. His blog post is titled Being Grateful. In the post, he states "if anything were to happen to me tomorrow, would there be a record of what I was grateful for" and then he went on to list all those things he was grateful for in 2014. At the end of the post Dr Dizon writes, "I encourage each of us to take a moment and reflect on the year each of us had, and to think of what it is we are grateful for. "

After reading that last paragraph I knew exactly what my next blog post would be about as we end the year. Here is what I am grateful for.

I am grateful for my husband of 36 years, who this year as in the past nine, has continued to provide love and support my efforts as a cancer advocate.

I am grateful for my children, their spouses and spouses-to-be and my grandchildren. They have brought me much joy this year even though they live thousands of miles away. Congratulations A on completing your Masters Degree and M for passing your comprehensive exams on your way to your PhD, and A on your new job. JT and TJ I love google chatting with you but love it better when we can visit.

I am grateful for family members who have gathered with me for lunch, listened to me, offered advice and gone shopping we me.

I am grateful for my friends both those I have had for 30+ years and the new friends I made at MedX in September this year.

I am grateful for Christina, my co-moderator and  co-founder  and the wonderful Health Care Moderators of the #gyncsm community. With their chat and medical expertise we have been able to share helpful information with women diagnosed with gynecologic cancers, their caregivers and healthcare providers to others.

I am grateful for my gynecologic oncologists who continue to treat patients with care and compassion while conducting research to find better ways to treat women diagnosed with ovarian cancer.

I am grateful for my agility instructors.With their expert instructions, help and advice, I have had a wonderful first year at agility competitions.

I am grateful for my dog Amber. She has been a fun companion as we completed the requirements for novice and open Jumps With Weaves titles.

Yes, Dr Dizon this was a very easy list to compile.

I challenge my blogger  friends to post their very own I'm grateful list.

Every Day is a Blessing!

Monday, December 15, 2014

Ovarian Cancer Facts for NJ

Today I made a presentation about ovarian cancer to the members of the Hunterdon Mercer Chronic Disease Coalition. I thought I would share some facts with my readers.

In 2011 there were 699 cases of Ovarian Cancer diagnosed in NJ.
  •  Hunterdon County  7 
  •  Mercer County 28
In 2011 in NJ there were 483 deaths due to Ovarian Cancer
  • Hunterdon County 6 
  • Mercer County 21
I found the information on the NJ Cancer Registry site at   
Information about how to use the site can be found here. It is a three frame window and takes some time to load. 
A link to a report of Cancer Incidence & Mortality in New Jersey, 2007-2011 can be found at

I appreciate the opportunity to present the information for all the Coalition members. 

Every Day is a Blessing!

Sunday, December 7, 2014

Losses and Friendship


noun \ˈfrend\
: a person who you like and enjoy being with
: a person who helps or supports someone or something (such as a cause or charity)
That is the definition I found in the online dictionary. 

Since the day before Thanksgiving four women I know have died due to ovarian cancer. Only one of them have I actually met in person and that was only for about an hour. But I reacted to their deaths as if they were friends from work or church or my neighborhood.

I have heard people remark that you can not be close to people you only know online and you can't be friends. I will admit I get a bit annoyed when people say that. Three of the women were members of two different groups for ovarian cancer survivors on Facebook and one I met on Twitter first and then friended her on Facebook and eventually met her in person. One woman lived in Engand. Another was the mother of Cynthia ( also an ovarian cancer survivor). But for me my online friends fit the second friend definition of "helping and supporting someone." These women were no different than women I have met in person at various ovarian cancer awareness or education events. or at conferences or courses. Afterward we stay in touch through e-mail, support groups or phone calls.

We meet because of our disease but bonded as we supported each other and shared information about treatments, side effects or  how to emotionally handle the stress of scan time. And as with other friendships along the way you learn other things about the person such as the shows they like to watch on TV, books they like to read, where they were born, what work they do, where they went to college and what their hobbies are. So it really is the same process of building a friendship as if you had met in person.

I value each and every one of the women I have met in person as well as those I only know on social media. Our numbers are not as large as those diagnosed with other cancers but we are strong and want to make connects in person and online and their is value to both.

RIP - Benita, Cheryl, Elaine, Barbara I was honored to have known you.

Every Day is a Blessing!


Saturday, November 22, 2014

OC News : Bevacizumab, Rucaparib, Trebananib

During the past few weeks there have been a number of developments in Ovarian Cancer  treatment and research in the news. Below are my top three picks.

Bevacizumab (Avastin) for Recurrent Ovarian Cancer

The FDA approved Avastin, a VEGF inhibitor made by Genentech, for treatment of persistent, recurrent or late stage Ovarian Cancer. Avastin can be used with paclitaxel, pegylated liposomal doxorubicin or topotecan chemotherapy.
FDA announce may be found here
Genentech Press Release and results of the Phase III AURELIA study can be found here.

6th EORTC-NCI-AACR  Symposium on Molecular Targets and Cancer Therapeutics in Barcelona, Spain News

Researchers identified a biomarker that can predict which women will respond to rucaparib, a PARP inhibitor. Rucaparib is an oral drug. Dr Elizabeth Swisher said "good responses to rucaparib in women with ovarian cancers exhibiting a form of cell damage called genomic loss of heterozygosity (LOH), in which an entire chromosomal region on one copy of the genome is lost" as well as in those who have BRCA1/2 mutations. (

Trebananib Fails to Improve Overall Surviva

The trial, TRINOVA-1, tested  Amgen 's drug, trebananib along with Placitaxel. Results show that there was not a significant improvement in overall survival trebananib was used.
Reuter's article -

Every Day is a Blessing !

Monday, November 17, 2014

Biases and Cancer

A few days ago Dr Rick Boulay sent me a tweet with a link to his TEDx Lehigh River talk "Cancerism:  Confronting The Biases We Share". ( Dr Boulay is one of #gyncsm's healthcare advisors.) I watched the video and found myself saying "oh, that's me" and " I get it." and agreed that yes, we(patients) need hope. Please take a few minutes to watch this moving talk.

I knew the pain and suffering cancer caused as I watched family and friends go through treatment and die from the disease. I carried biases about the disease. So it isn't surprising that those biases were apparent when I was diagnosis.

My sister would vomit after chemotherapy. So when I heard I had ovarian cancer and would also need chemotherapy, what was I worried about?  Vomiting. That was it. I told my doctor I would do chemotherapy as long as I didn't have to throw up. She told me not to worry there were many new drugs to alleviate the vomiting that came with chemotherapy. And she was right except for one time which occurred right before my severe allergic reaction to carboplatin.

When I was in treatment I would not plan more than a month in advance.  I was living in 3 week segments. On week one I had chemotherapy then I had 2 weeks off and started all over again. I wasn't even sure I would get the chemotherapy treatment on time. My platelets or my white count could be low and then everything was pushed back. I had no control of my time. There were days I never got out of bed so those days just disappeared. When the weather started getting cold and my husband suggested I buy a new coat I said "no!". Why?  I was afraid to buy one. I had heard about Gilda Radner and she didn't make it. Chances were I wouldn't make it either. Why would I buy a coat I will never get a chance to use. It took me almost a year after finishing treatment to be able to plan more than 6 months in advance.

All of us - patients and healthcare providers alike - have preconceived notions about the disease. Patients are afraid and feel vulnerable. I know I was. What can we do to offer hope?

Every Day is a Blessing! 


Friday, November 7, 2014

The Words I Use

Over the past few weeks I have taken part in a number of tweet chats and Facebook discussions that revolve around the words we use when we are diagnosed with cancer.

People diagnosed with cancer and those who treat them often use the term "survivor". The NCI definition of survivor is:

 "One who remains alive and continues to function during and after overcoming a serious hardship or life-threatening disease. In cancer, a person is considered to be a survivor from the time of diagnosis until the end of life.".

When I was in treatment I called myself a cancer patient. When I finished treatment I called myself a survivor and that word choice was solidified when I attended the LiveSTRONG Survivors Summit in 2006. Then I recurred, I wasn't sure what to label myself- I was a cancer patient and a survivor.  At the time I was on my cancer center's Survivorship Day planning committee.  I even questioned whether or not it was OK that I be a committee member since I had recurred and was back in treatment. The chair told me she considers everyone from the day of diagnosis as a survivor. Since that day whether I am in treatment or not I have called myself a survivor.

I know there are women with recurrent ovarian cancer or metastatic breast cancer who don't like the term survivor. Susan Gubar shares her thoughts on words like survivor in this article from 2012.
( ) Women are looking for a different word to describe their situation. What to you say when you are living with cancer? What about women who are living for long periods of time with stable disease and are not in treatment? I have read that some use the word "thriver" . That is an interesting word - thriving while in treatment and thriving between treatments.

In other online discussions, I have found people do not like using words that relate cancer to terms of war such as battle or fighter. When I was in treatment I felt I was in a battle. I was in a battle for my life. And my weapons were the chemotherapy drugs I took and the support I had and the prayers I said. I visualized the chemo traveling via my blood into the cancer cells and killing them. Yes, I fought cancer. And I would not have been able to do that without the expertise of my doctors and their surgical skills and their ability to offer me clinical trials and chemotherapy options. Will I recur? I'm not sure but if I do I will fight again.

Do I think any less of women like Pam, Sharon, Rita Kay, or any of the other women from my support group who died because of their disease. No. Do I think they didn't fight hard enough? Heck NO! If their families want to say they "lost their battle" I am OK with that.  And if you are in cancer treatment and you disagree with me that's OK you may have your opinion and I have mine. Two pieces, one by Aria  Jones (  ) and one by Kate Granger ( ) offer the opposing view. This article "Fighting Battles and the Language of Cancer"in  Journeying Beyond Breast Cancer  discusses metaphors and feelings of guilt in those with terminal disease ( but suggests the metaphors are important as a tool to handle our experiences . You may make up your own mind as to which terms work best for you.

I know by putting my thoughts and opinions on this page I open myself to people who will disagree with me. That is fine as long as you do so while respecting my opinion of the words I choose to describe my journey with cancer.

Every Day is a Blessing!

Tuesday, October 28, 2014

Teal Tender Hears For Ovarian Cancer Awareness

My friend and fellow ovarian cancer survivor, Tina Rangel founded an ovarian cancer awareness organization called Teal Tender Hearts for Ovarian Cancer Awareness. You can read her story on the #gyncsm blog.

I am happy to see another organization raising awareness of Ovarian Cancer in New Jersey. Teal Tender Hearts for Ovarian Cancer Awareness can also be found on Facebook. Thank you Tina for all you and your family do to raise awareness.

Every Day is a Blessing!

Monday, October 6, 2014

Ending a long term relationship

Today was a big day for me. After 9 years and 57 days I had my port removed.

My husband drove me up to Robert Wood Johnson University Hospital (RWJUH), I registered for the procedure and went downstairs to Interventional Radiology (IR) . This was the exact place where my port was inserted on August 9, 2005. It seemed like ages ago.

The IR nurse checked my history and confirmed my meds. All my previous surgeries have taken place at RWJUH so most of the information was already available so all I had to do was confirm it. (BTW: I was asked if I had traveled outside the US in the past 3 months.)  I then dressed in one of those stylish gowns with the wide open backs and got ready to be taken in. The PA who was doing the procedure also came to see me and went over exactly what she would be doing and asked if I had any questions.

As other patients were being treated I laid there thinking about what was actually taking place. I was giving up my port. I was ready. In the past I have been fearful to get the port removed. Afraid that if I took out the port my cancer would return . My veins are not the best and I have always been concerned about having to have IVs through my veins. But now that I am down to one CT scan a year I am ok with the uncomfortable sensation and pain I get when an IV is inserted. And now that I am 5 years from my recurrence  I am ready to say that I might not recur any time soon. 

 My nephew's friend, a nurse in that area, rolled me into the procedure room and stayed with me during the procedure. As I was moved onto the table and being covered with a warm blanket in walked the doctor who had inserted the double port 9+ years ago. He was happy to see that I was getting the port out and wished me luck.

As the PA injected the anesthetic into the area where my port has resided for the past few years she apologized for causing me discomfort. I told her that compared to accessing my port without any lidocaine cream this wasn't painful at all. She continued with the procedure asking me how I was diagnosed, who was my gyn-onc and who did my spleen and liver surgery. We chatted while my nephew's friend held my hand. I felt pulls and tugs and then she said it is out. WOW! She then asked one of the techs to clean it so I could take it home. Yes, I had asked to take this part of me home.

She stitched me up, put on the dermabond and I thanked her for doing the procedure with such care.

Back in the recovery room I was given my discharge instructions and my port in a small plastic container. As I left the nurse turned to say goodbye and told me she hopes she doesn't ever have to see me again. I hope so too.

Every Day is a Blessing! Blessed to be treated at RWJUH.

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!

Sunday, August 24, 2014

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.

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

Wednesday, August 6, 2014

I’m Gearing up for Medicine X and You Should Too

In less than a month I will be flying out to California to attend the Stanford Medicine X (MedX) conference as one of this year's e-patient scholar delegates. (You can find a list of this year’s e-patient delegates here.) I so happy to be taking part in the MedX | IDEO Design Challenge.

I can almost see your faces as you read this. You are thinking, “What is an e-patient? What is Med X?” Why do you want to attend?”

What is an e-patient?
ePatient (e!pa!tient/e‘p"SH#nt/): 1. A health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use electronic communication tools (including Web 2.0 tools) in coping with medical conditions. 2. Friends and family members (e-Caregivers) who go online on behalf of patients. (Stanford MedicineX definition) 
I wrote about being an e-patient in a February blog post

What is MedX ? Who is involved with MedX?
 Medicine X is a catalyst for innovative ideas about the future of medicine, healthcare, and wellness. The initiative explores how emerging technologies will advance medical practice, improve health outcomes, and empower patients to be active participants in their own care. The “X” is meant to encourage thinking beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health and well-being.”

Creativity combined with healthcare. How amazing is that? Pretty amazing I think and one of the main reasons I applied to be an e-patient delegate this year. The MedX conference is an academic conference but it is designed for everyone to participate in.  You will find researchers, physicians, mental health-care providers, designers, engineers, technologists, and patients sitting side-by-side learning, creating and sharing their stories and ideas.  I am so excited that the patient voice is being included.

Those stories and ideas will be shared with others through Twitter, Facebook and participant blogs. But you can attend this conference virtually and not miss any of the keynote speeches, etc  by registering for free Global Access. You can register for free at

What is the IDEO Challenge?
On September 4th, Stanford Medicine X and the design firm, IDEO will bring together patients, designers, researchers, and health-care providers to collaborate in teams to improve patient care.  I have been learning about the design process and for the past few days I have been developing problem statements that my team can work on the day of the Challenge.  I will be focusing on problems that patients with cancer face but the ideas can be applied to other chronic illnesses as well. 

When and Where is MedX? The Stanford Medicine X conference is held September  5-7, 2014 in Palo Alto, California.  The IDEO Challenge is held the day before the conference.

Why do I want to attend MedX? I have been an ovarian cancer advocate for nine years. I've written about my journey with the disease. I spoken about ovarian cancer symptoms and blogged about research into better treatments and an early detection test. I’ve co-moderated a monthly tweet chat (#gyncsm) for gynecologic cancer survivors. But it has been years since I worked as an engineer and been personally involved with the creative research and design process. MedX is the perfect place to blend advocacy with innovation and I can’t wait to be part of the conference and meet other e-patients.

I hope many of you will join me virtually it should be an  incredible experience. 


Every Day is a Blessing !