Friday, February 20, 2015

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!

Monday, February 16, 2015

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 :


 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

 


Monday, February 2, 2015

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!  

Thursday, January 29, 2015

The things that make you go Ugh!


In November I had a CA-125 blood test. It came back 21.  The previous result was 14. I went for a retest in December and it came back 20. So it looks like it is now stable but at a different level. Keep in mind that my CA-125 was 17 when I recurred on my liver and spleen in 2008 so of course there is concern that my number was trending up - even in the normal range.

I decided to look more closely at the test results sheet because the results were reported as normal < 35 and I had thought the normal for the tests I had been having was < 21. 

Here is what I found on the sheet: 
" THIS TEST WAS PERFORMED USING THE BECKMAN COULTER CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE.
"

So I went back to the report from August 2014 and sure enough the  normal for the test was reported < 21. 

The report said:

" THIS TEST WAS PERFORMED USING THE SIEMENS (DPC) CHEMILUMINESCENT METHOD. VALUES OBTAINED FROM DIFFERENT ASSAY METHODS CANNOT BE USED INTERCHANGEABLY. CA 125 LEVELS, REGARDLESS OF VALUE, SHOULD NOT BE INTERPRETED AS ABSOLUTE EVIDENCE OF THE PRESENCE OR ABSENCE OF DISEASE."

Ugh!  "Look they went and changed the method!" Maybe that is why my CA-125 went up. The last time the method was changed the lab followed it using both tests for a few months to see how the results correlated.  I was in treatment then and we were following it closely to make sure the chemo was working.

Being the research "hound" that I am I got on Google and investigated how the tests are done and what the difference was between the two methods.

I learned that both tests -  are chemiluminescent immunoassay tests. They use a monoclonal anti-CA125 antigen alkaline phosphatase conjugate and paramagnetic particles which are then separated in a magnetic field. A chemiluminescent substrate is added and the light generated by the reaction is measured with a luminometer. The light produced is proportional to the concentration of CA-125 antigen. 

From what I read the Beckman test uses two mouse monoclonal antibodies while the Siemen uses one mouse antibody and one rabbit monoclonal antibody. I am going to assume that is was causes the difference in results since all the tests were being done by the same lab.

The up and down of CA-125 results causes enough anxiety without having a different  method which could be the cause of the change thrown into the mix. 

I probably should have looked more closely at the results when they first came in before getting nervous. 

I will be seeing my gyn onc in February and had a CT scan today so I think I will have my answer if it is something I should really worry about. 

Dee
Every Day is a Blessing!


 



Monday, January 19, 2015

The Only Constant in Life

is Change!

The most recent change which makes me feel happy and sad at the same time involves a person who has played an important role in my journey with ovarian cancer.

Early last week I learned J, a social worker at my cancer center, was leaving. I am happy because she is making a move that is so wonderful for her and her family. But I am still sad because I will no longer see someone who has made my cancer survivorship easier.

J took care of the gynecologic cancer patients and facilitated the Gyn Cancer Support group. She has been instrumental in the success of this group for more than seven years. Because of her expertise as a social worker, she knew just when a patient needed the support of others and that is when she would tell them about the  support group and ask them to join us.

She also was involved in a number of patient programs at the cancer center including Survivors Day.  I served on the Survivors Day Planning Committee with her for a few years so I was able to see her creativity, her efforts to make the day special for patients and how well she got along with other cancer center staff and other survivors.

J was always there for me. I used to call her J- 911. If there was an emotional need all you had to do was call J-911 and she would be there with all the advice you needed to get you through the rough spots.  She was especially helpful to me when the deaths of friends in the support group deeply affected me. After seven years she was more to me that just a social worker she was a friend.

I wish only the best for J.


Dee
Every Day is a Blessing! J was such a blessing to me. 

Monday, January 5, 2015

"Outshine"- A Must Read

Last month, I won a Wego Health contest in which the prize was an autographed copy of " Outshine An Ovarian Cancer Memoir "by Karen Ingalls, a stage II ovarian cancer survivor. Due to a very busy Christmas holiday I didn't get a chance to get around to reading it until New Years Day.

"Outshine" is a well written, easy to read book. For me, reading the book was as if I was having a coffee and chatting with a woman from my support group. Ms Ingall's not only shares her story with ovarian cancer but also provides information about the symptoms of the disease, diagnostic tests ( CT, MRI, PET) and treatment options. Helpful for newly diagnosed women is her advice regarding how she handled side effects of chemotherapy through standard medicine and complimentary medicine. She also discusses the important role her husband, family and friends played in aiding in her recovery. Ms Ingalls does not leave out the pain and anguish.  I could totally relate to what she was going through.  Rather she offers excellent advice on how she dealt with not only the emotional issues but also the physical issues of her diagnosis. 

This may seem odd but I couldn't wait to get to the end of each chapter. Why was I in such a rush? Because I couldn't wait to read the poem, scripture verse , saying or affirmation related to the chapter. Here is the one you will find at the end of Ch 15:

We can turn our backs on tomorrow
And live for yesterday.
Or we can be happy for tomorrow
Because of yesterday.- Anonymous

Over the past 9 years I've read a number of books by or about women diagnosed with ovarian cancer such as The Light Within  and Memoir of a Debulked Woman as well as other books by and for cancer survivors. "Outshine" is one of my favorites and its contents are of value to women diagnosed with the disease as well as their caregivers. I will be sure to share the book with women in my support group.

You may order the book on Amazon. More information about the author and the book may be found at the book's website.

Dee
Every Day is a Blessing! Blessed to have had the opportunity to read "Outshine".

Thursday, January 1, 2015

It is 2015 !

It is 2015, I'm here and I am thrill!
I look forward to March and my son's wedding. I love my future daughter-in-law and am so happy to have her join the family.
I look forward to June when I will celebrate a pretty special birthday.
And I look forward to July,well the 29th in particular, when I will celebrate a landmark "cancerversary" - my 10th.

Even with all these exciting things already planned for the year I still want to make my  annual aspirations.  I wrote about my aspirations for 2014 here. For 2015, I'm going to repeat some of last year's aspirations ( I never did make a trip to Maine) and update some others. Here they are:
  • Continue to visit my children and grandchildren every few months
  • Continue to advocate for ovarian cancer patients and research through this blog and the #gyncsm community
  • Post more frequently on this blog
  • Help my dog, Amber, achieve Excellent titles in Agility
  • Continue to increase my physical activity and flexibility so that I can be a better dog handler and improve my health
  • Continue to paint
  • Visit the state of Maine
  • Learn some Hindi words (New)
I wish for all my readers a Happy and Healthy and Joyful 2015.

Dee
Every Day is a blessing!