Today Feb 28th is Rare Disease Day

I wrote a piece about Rare Disease Day for the #gyncsm blog.  Here is some of the content from that post.

DAY by DAY,

HAND by HAND

 

The #gyncsm community has once again joined forces with rare disease patients and health care advocates in the U.S. and around the world for Rare Disease Day® on February 28th.  Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges faced by patients and the community.

In the United States, a disease is considered rare if it is believed to affect fewer than 200,000 Americans. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and two-thirds of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments. 

Do you know the gynecologic cancers that are considered rare diseases by the NIH's Office of Rare Diseases Research? They are:

Ovarian

Uterine,

Endometrial,

Fallopian tube,

GTD (Gestational Trophoblastic Disease),

Vaginal and

Vulvar cancers

Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face.  It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, a leading independent, non-profit organization committed to the identification, treatment, and cure of rare diseases.

Watch this Rare Disease video

For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us.  For information about global activities, go to www.rarediseaseday.org).  To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.

Dee
Every Day is a Blessing!
 

Another Six Months

Yesterday was my routine follow-up exam appointment with my Gynecologic Oncologist.  I had not seen my doctor in six months so it was nice to catch up on things.  First up were the non-medical questions beginning with "So where are the pictures of those grandbabies? Then she asked about my son's upcoming wedding, where my daughter and her family are living now and lastly about my advocacy work. By asking those questions about me first she has over the years gotten to know me as Dee not just some woman with Stage 3 serous epithelial ovarian cancer. She has been "patient-centered" for as long as I have known her.

When we got down to the business of how I was doing medically, the first thing on the agenda was my CA-125. I have posted here about the up tick in my CA-125 result recently and how the method to determine CA-125 was changed at the lab where I have my blood work done.  We discussed how though my recent numbers were higher than with the other test method, they where stable ( 21, 20 U/ML) and she was comfortable with those results. 

We then turned to discussing the results of my recent CT scan. She turned to me with a big smile on her face and said - all clear. I had read the results two days after the scan on my patient portal but it was still great to hear her say it. 

The internal exam, not my favorite part of the apointment,  ended with "You're good". Hurrah! So while there was some concern that there was a different cause for my rising CA-125 it appears that based on the clear scan and exam , the method change is the true cause of the bump up.

With so many exciting things happening in the next month or two I am happy that I can put my recurrence worries back on the shelf for 6 more months.


Dee
Every Day is a blessing!

Answering a Question is Not Always Easy

Last week I was busy co-moderating and participating in the #gyncsm  chat on Care Beyond Medical Care. In response to the topic questions "What things do you find helpful in reducing stress? " I tweeted :

T3 to this day I use a mantra to reduce stress when I was waiting for tests and scans #gyncsm
— Women of Teal (@womenofteal) February 12, 2015

 The tweets were coming at me pretty quick so it was not until I was reading through the transcript to put together the resources for the #gyncsm blog did I realized one of the participants had asked me what my mantra was.

I have been pondering whether or not to respond to the question on twitter or here in a post. I realize that many things that are shared on social media may be ridiculed, made fun of and insulted. I've seen enough of that in the years I have been blogging and tweeting. So I have hesitated sharing my mantra.

When discussing the tools patients use to get themselves through some pretty debilitating surgeries,  chemotherapy or radiations treatments that go along with a cancer diagnosis there is seldom a mention of faith or religion or prayer or even spirituality. There is some research on faith/ spirituality  and the role it might play in the life of a person diagnosed with cancer. See sources below.

When people ask me what got me through my diagnosis and treatment I respond " My family, faith, good medicine, and good doctors ". Usually the discussion will then lean toward the clinical trial I was on or where I was treated.Very few people have asked me what about my faith had helped me. After getting that question on Twitter I thought it may just be time to share some of my thoughts. 

Let's begin with my mantra which is:

"With God All Things Are Possible". 

I can't say how often I have repeated the phrase over the past 10 years but believe me I have used it very,very frequently.

My faith and prayer helped me get through two surgeries and 16 chemotherapy treatments. When I couldn't sleep at night and I was pacing the floor I would say the Rosary and meditate on the mysteries. By the time I was done I was calmer and ready to go to sleep. I carried a mini rosary with me to every chemo treatment. I prayed to Saint Pope John Paul II and still carry a rosary in my pocket book that was blessed by Saint Pope John Paul II when he came to NJ.

Most recently I used the phrase when I went for a CT scan. As I waited for the nurse to find a vein for the IV contrast, I repeated the phrase to myself over and over. Then again as my body entered the donut-shaped machine and the voice said" Take a deep breath and hold it" I said the phrase again.

So faith has played a role in my life and in my journey with cancer. Have others had their faith or spirituality help them get through the rough times?

Dee
Every Day is a Blessing!


Sources:

Importance of Faith on Medical Decisions Regarding Cancer Care : http://jco.ascopubs.org/content/21/7/1379.abstract 

In God and CAM we trust. Religious faith and use of complementary and alternative medicine (CAM) in a nationwide cohort of women treated for early breast cancer

Spirituality in the cancer trajectory

 

From the Past to the Present

Past:
In 2005 when  I was first diagnosed I didn't know about ovarian cancer or its treatment. I remember looking online at the Barnes and Noble website for books related to ovarian cancer. I wanted to know what all the medical terms meant and what to expect from chemotherapy and loosing my hair. Most of the books I saw online were written for medical professionals. Then I found 100 Questions and Answers about Ovarian Cancer by Dr Don Dizon, Dr. Nadeem R. Abu-Rustum and ovarian cancer survivor Andrea Gibbs Brown. The reviews by patients were good so I ordered it.

When the paperback arrived I started to read through the first few sections on the basics, staging and treatment of ovarian cancer. Here were medical terms but this time definitions in lay terms were included. I underlined terms and sections I wanted to be able to find later and wrote notes in the margins.  Further into treatment, I read the sections on side effects and the CA-125 test. I highlighted what Andrea said about what she did about eating light small meals while in chemotherapy. I finished treatment and the book went on the shelf. 

When I recurred I once again referred to the section showing the various drugs used for chemotherapy. And then I was NED again and the book went back on the shelf. In 2010 when we moved to our new home the book came with me and went back on the bookshelf in the loft.

Present:
Dr Don Dizon is one of three health care moderators of the #gyncsm tweet chat, which I co-moderate. (Information about the #gyncsm community and chat may be found on our blog.) For a little over a year Dr Don Dizon's advice has helped to  develop the community and chat topics. I also learned about his work at Massachusetts General Hospital (MGH) Cancer Center and with the American Society of Clinical Oncology and of course his experience working with patients with gynecologic cancers.

A few weeks ago Dr. Dizon e-mailed me and asked if I would be willing to write the patient comments for the 3rd Edition of 100 Questions and Answers about Ovarian Cancer. As I read the e-mail I thought to myself "Gee the title of that book sounds familiar". So I went to my bookshelf , pulled out the book and saw that Dr Dizon wrote the book I used years ago. I flipped open the book and saw the notes and underlines I had made. It only took me a few minutes to check my calendar and answer yes to his request.

Then I went to work responding to the same questions the doctors had already provided medical answers to. I wrote about my symptoms,  my experience in a clinical trial and how I made the decision to treat my recurrence. I wrote about the members of my care team, dealing with the emotions of a cancer diagnosis and where I went for support.

When I wrote about loosing my hair I smiled to myself as I remembered the large beaded earrings I would wear with my scarves and hats. I also remembered the emotions I felt when I learned I recurred and when women in my support group died because of the disease.  It wasn't always easy to find the right words ( thank you "chemo brain") but after a number of edits ( 5-6) I finally felt comfortable sharing the answers with Dr Dizon. With his approval, last Thursday I submitted my answers to the editor at Jones and Bartlett Publishers.  I am honored to have been asked to share my experience with others and  hope that it will help women and caregivers as much as Andrea's comments helped me.

The book is scheduled to be published at the end of March. I'll be sure to let my readers know when it is available. 

Dee
Every Day is a Blessing!