Reaching a milestone - This Blog's 10th Anniversary

It is hard to believe that on this day in 2007 I created this blog and wrote my very first blog post. I was inspired through friends I met at the LiveSTRONG Survivors Summit to write a blog as a way to share my story with other women diagnosed with ovarian cancer.  I also provided information on ovarian cancer awareness organizations in NJ and their local events.

Through the years I have covered many topics related to what I experienced as a patient and survivor. Some posts were about the physical aspects of being a survivor but I also shared the emotional aspects of treatment and survivorship. I wrote about my recurrence in 2008, from hearing my cancer had returned, to the surgery to remove my spleen and resection my liver, to the chemotherapy and the allergic reaction to carboplatin that required a hospital stay. I have written about dealing with "scanxiety" as I wait for test results, the sadness and guilt when my  friends pass away from ovarian cancer, the frustration from chemo brain and the peripheral neuropathy in my toes.

I also shared the happy occasions, the graduations, weddings and births and wonderful family trips. Writing this blog also opened doors for many other advocacy avenues. Through my activities on the Twitter account of this blog,  I co-founded the #gyncsm ( Gyn Cancer Social Media ) Community. I  co-authoring the book "100 Questions and Answers about Ovarian Cancer", and wrote blogs posts for SGO, SHARE and Cancer Hope Network and my cancer center's newsletter.

As my advocacy work expanded to research advocacy, my blog posts evolved to be a way for me to explain in layman's terms the latest ovarian cancer research. Now I write about new clinical trials and trial results reported in peer reviewed journals. I blog and Tweet about the ovarian cancer research when I attended ASCO annual meetings in person.

I've never kept close track of the statistics for this blog. Usually once a year, on this blog's anniversary I look back at what I wrote during the previous year. In 2017, I wrote 54 posts including this one. I have published a total of 1060 posts in the past 10 years. Some years I wrote more blog posts than other years but I continued to blog. This blog's pages have been viewed 356,827 times.

My top five posts since 2010 (when Blogger started keeping track)  are:

What I Wish I Knew Before My First Chemo

May 9, 2011

2209 views

ASCO 2015 Part I : Connections

Jun 5, 2015

1760 views

ASCO 2015 - Connections and Knowledge

Jun 3, 2015

1635 views

No Berry Smoothie Flavored Readi-CAT for Me

Aug 17, 2011

1564 views

Book Review: Making Sense of Medicine

Sep 11, 2016

1406 views

I have enjoyed sharing my story and educating others about ovarian cancer through this blog. I hope that women diagnosed with ovarian cancer, their caregivers and others who follow this blog have found it helpful. I do believe - Every Day is a Blessing !

See you all in 2018!

Dee
Every Day is a Blessing!
PS : This blog may look different when you check back in January. 

Happy Holidays!

With Christmas fast approaching I will be taking a break from posting to this blog for the next week. Be sure to check back on the 30th for a special post.

I wanted to be sure with wish everyone...

Dee
Every Day is a Blessing!

Off Balance

A few weeks ago I was watching the TV show This is Us and the young character said she felt "off balance".

For some reason those words stayed with me. After the show ended I kept thinking back to how it feels to be "off balance". I will admit I have felt off balance many times after my cancer diagnosis.  It is a bit hard to describe how that feels but I'll give it a shot.

During treatment, I was not doing the things I had regularly done. I wasn't working. My husband and daughter cleaned the house, went food shopping and made all the meals. I learned over time that it was OK to put myself first and to ask for help. But it took some time to get that balance back.

There were times when I was in treatment when I would go out with long-time friends for dinner. I was happy to be there, yet I was off balance. I sat there with my scarf on and looked at their hair. I heard them talk about making plans for vacations or redesigning their kitchen or complaining about traffic. But I was in treatment. It didn't feel right to share how I felt so exhausted that I didn't get out of bed for two days. How my scalp actually hurt - as if my hair had been in a pony tail for days. It was like I was watching them from afar. Maybe I was a bit jealous that they could make plans because I wasn't planning past my next chemo treatment. It was like I couldn't be in the real world while I was in the "cancer world".

Then I finished treatment. Great. I should be happy. And in a way I was but at the same time I was scared. So I was off balance again. I could never go back to normal so I would have to find a new normal. But what was that? I tried but never achieved the old normal. But eventually I had a good new normal going along with the occasional bout of anxiety over CT scans , Ca-125's and doctor appointments.

There are times to this day that having had a cancer diagnosis makes me feel off balance. When I hear of a women I call friend who will be entering hospice or when a clinical trial I hope will show amazing results in treating ovarian cancer comes back equal to the current treatment I feel off balance.

I am thankful for my health care team, my husband, family and friends who help me get  my balance back.

Dee
Every Day is a blessing! 

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

   
Recently my friend, Lynn, shared with me what she had learned during the Foundation for Women's Cancer Ovarian Cancer Survivors Course held in October at the Summit Medical Group. One session on chemotherapy induce peripheral neuropathy was presented by Timothy Marshall, PhD a Professor of Physical Therapy at Kean University ( Union, N.J.). Knowing I have experienced neuropathy she thought I might be interested in a clinical trial he was running and she sent me his contact information.  I contacted Dr Marshall in November to learn more about his trial Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk.

Chemotherapy induced peripheral neuropathy can be numbness, tingling, pins and needles and pain in the toes and fingers. I experience this in my toes and have mentioned it in a few entries in this blog. Dr. Marshall sent me the Informed Consent form for the trial and we set a date to be evaluated in December. 

Last week I went to the Kean University Campus to take part in the trial. This was a relatively easy trial - as trials come -  to participate in. I shared with Dr. Marshall the chemotherapy drugs I had received, their dosage and the number of cycles I had during my initial and recurrence chemotherapy treatments. He asked about the level of exercise I currently take part in and measured my height and weight.

Then the actual evaluation started. The first test was to measure my hand grip strength.  I was asked to squeeze a handgrip dynanometer (3 times in each hand). 
Next after taking off my shoes and socks I was asked to sit on a table. and close and cover my eyes.  Dr. Marshall touched my feet and toes using a Jamar Microfilament - a very thin bendable wire, to assess sensation in my feet.   I was told to respond when I could feel the filament touch various parts of my foot. 

After putting my shoes and socks back on, a BTS G-Walk system was fitted to my waist. The BTS G-Walk system is a wireless tri- axial accelerometer. An accelerometer is an electromechanical device that measures acceleration forces. The system included EMGS placed on both my calves front and back. Electromyography (EMG) is a way to assess how well the muscles are working while I walk. I walked from one side of the room to the other a few times, all the time the Walk system was gathering data.  Lastly, I was asked to perform a ‘Timed-up and-Go' test, in which I had to stand up from a chair, walk about 9 feet, turn around and walk back to the chair and sit back down; this assessed fall risk. 

And in one hour the trial tests were complete.

I enjoyed talking to Dr. Marshall about his research including this study published in the Journal of Cancer Research and Practice Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk in older adults following cancer treatment. 

This trial is currently recruiting so if you are a physician and would like to refer a patient who is experiencing the impact of CIPN or a cancer patient/ survivor who continues to experience CIPN years after treatment or is experiencing CIPN while undergoing treatment, feel free to contact Dr. Marshall at marshati@kean.edu or call 908-737-6177. 

Thank you Dr. Marshall for doing research crucial to improving the survivorship of cancer patients. 

Dee
Every Day is a Blessing! 

Where does Ovarian Cancer originate?

In the past it was thought that fallopian tube cancers were precursors to ovarian cancer. In October, in the Journal Nature Communications research supporting that hypothesis was presented in the article, High Grade serous ovarian carcinomas originate in the fallopian tubes.  

Researchers used whole exome sequencing (a technique for sequencing all of the protein-coding genes in a genome) and  copy number analyses ( process to analyze DNA chromosomes number variations) to study fallopian tube lesions, ovarian cancers and metastases from women with high grade serous ovarian cancer. The fallopian tube lesions were examined for p53 signatures, serous tubal intraepithelial carcinomas(STICS) and fallopian tube carincinomas. TP53, BRCA1, BRCA2 oor PTEN specific alterations found in the ovarian cancer tumors were present in the serous intraepithelial carcinomas (STICS). Analysis revealed that the p53signatures and the STICS are precursors of ovarian carcinoma.

Using a mathematical model researchers determined that it took an average of 6.5 years for the earliest development of a fallopian tube lesion to become ovarian cancer. They also found that metastasis followed rapidly after the ovarian cancer carcinoma was initiated on average 2 years. Though the number of women whose samples were tested in this study was small(5), the results suggest that ovarian cancer is originates in the fallopian tubes.


To read the complete study please visit https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653668/

Additional articles on this research are available at:
NCI
https://www.cancer.gov/news-events/cancer-currents-blog/2017/ovarian-cancer-fallopian-tube-origins
Science Daily
https://www.sciencedaily.com/releases/2017/10/171023094404.htm
Futurity
http://www.futurity.org/ovarian-cancer-fallopian-tubes-1583362-2/

This research may lead to improved screening tests. 

Dee
Every Day is a Blessing!