Quilts a Plenty

Ok this is totally - well maybe not totally but almost totally off the ovarian cancer topic.

Yesterday at the Ely House ( the home of the Hightstown -East Windsor Historic Society ) they held the "Back in Time "Quilt show. The Society invited Dana Balsamo, Material Pleasures, to speak about "Dating Fabric - 300 Years of America".

I am not a quilter, I don't even sow well - except for maybe a button or snap here and there. But after seeing my friend Sharon working on quilts I got hooked but not in a sewing sort of way. Over the past year, I have been painting Quilt patterns. The first one "Hope" was teal and brown  for ovarian cancer,( http://womenofteal.blogspot.com/2011/04/friends-hobby-and-mine.html) the second was "Courage" pink and beige for breast cancer (http://womenofteal.blogspot.com/2012/01/second-painting-in-my-life-quilt-series.html)  and I am currently working on a grey and purple one for brain and pancreatic cancer.

So I thought attending this event would be a great way to find new patterns for my paintings.  I walked in paid my entrance fee and the first question I was asked was if I was a quilter. I said no but I paint quilts and the lady thought that it was a very neat thing for me to do. I asked if I could take photos (yes) but sadly before the lecture started my phone ran out of charge. I was happy to get a chance to meet some fellow Hightstown residents, one who was born in the Ely house and one who lives in a Victorian house on South Main who invited me to stop by.

The lecture was excellent. I learned about quilt making, why some had knots and the differences in patterns and fabric( muslin, dress cotton  and silk) from the early 1700's to the 2000's. The sample quilts were just beautiful. Here is a sampling of a few of the quilts I saw yesterday!

Delectable Mountain

modified Friendship Star

part of Hightstown Bicentenial quilt 

Log Cabin

Mosaic

Wedding Ring 

I think that I should expand my Life Quilt painting series to include quilts on beds and chairs.

Dee
Every Day is a Blessing!

My Health Word Clouds - HAWMC 30

Word  Cloud.  Make  a  word  cloud  or  tree  with  a  list  of  words  that  come  to  mind  when   you  think  about  your  blog,  health,  or  interests.  Use  a  thesaurus  to  make  the  branches  of your tree extend further ␣http://www.wordle.net/ 

Here are "Womens Cancer  I " and "Womens Cancer II" my word clouds . I had so much fun making the first one that I made a second. Enjoy! 

Dee

Every Day is a Blessing!

My Very First Chemotherapy HAWMC 28

The First Time ...Write  a  post  about  the  first  time  you  did  something.  What  is  it?   What  was  it  like?  What  did  you  learn  from  it? 

Before Chemo Became Routine

On July 29,2005 I had a  hysterectomy, oopherectomy and debulking surgery. And I was diagnosed with stage IIIB ovarian cancer. In the days that followed I dealt with pain from the abdominal surgery, I rested, I tried to learn as much as I could about the disease so I could make the decision of whether or not to do a clinical trial and I prayed. One short week after surgery I was back in the hospital in interventional radiology having my chest port-a-cath inserted. 

After gathering all the information I could about the clinical trial and the use of  selenium with carboplatin and taxol I decided to participate.  So two weeks after surgery I walked through the doors at my cancer center to have the first of many treatments. Needless to say, I was not very calm going in to the treatment area. I was moving slowly and carrying my little red pillow with me to cushion my belly when I stood or coughed.  I knew what my schedule was going forward Gail, the trial nurse, had explained that to me . On Monday I would receive IV  selenium and on Wednesday I would receive the carboplatin and taxol. I would do this every three weeks for 6 cycles ( which ended up turning into 9) Being in a clinical trial meant blood would be drawn every hour and continue until a few hours after the infusion was complete.  Interesting that I used to be able to rattle off the intervals but now almost 7 years later the details are a bit fuzzy.

I had not had time to visit the treatment area prior to beginning chemo so I didn't really know what to expect. Carla  was my nurse for the selenium infusion that first Monday. She was very good at calming my nerves and getting me prepared for what was to come. I learned how to use the rest room while dragging my IV pole after me. I learned when lunch was served, where I could get water, what stations were on what channels on the TV, how they would prepare me before inserting the needles into my port and to be prepared to give my name and date of birth frequently during my stay. The first day was long but I made it through. No side effect !

Did that make Wednesdays carbo and taxol infusion any easier? Well maybe just a bit. My problem on Wednesday was the jitters from taking the steroids the night before and the fact that I was so scared of being nauseous or vomiting from the carbo and taxol. I had told my gyn-onc about my fear of getting sick and she assured me that she would give me what I needed so I would not get sick. And once again my nurse, Sue, helped me through the day. She explained about the anti-nausea drug I was given and how it worked. And she explained how to make sure I had a little something to eat before coming to chemo. And she or one of the other nurses was always in close range of me during the time I was actually getting those drugs. She even explained that I should be sure to  take the anti-nausea pills on time when I got home so that I wouldn't be sick.  And the day, ending at 9pm because of the extra blood draws went smoothly. And you know what ? For 9 cycles  I never once vomited. That was a awesome thing in my book. 

So from this first of many chemos , I learned that if I ask questions and voice my concern about my treatments my doctors would do what they could to insure that my needs were met. 

Dee Sparacio

It's the little things HAWMC 27

5  Challenges  &  5  Small  Victories.  Make  a  list  of  the  5  most  difficult  parts  of  your   health  focus.  Make  another  top  5  list  for  the  little,  good  things  (small  victories)  that   keep  you  going. 

5 Challlenges 

1. Make women aware that there are symptoms of Ovarian Cancer ( Bloating, frequent urination, abdominal pain, difficulty eating)
2. Make women aware that all women are a risk for ovarian cancer .(Even if you had a hysterectomy you are at risk.)
3. Make women aware that the Pap Test does not screen for Ovarian Cancer. (There is NO screening test for ovarian cancer. )
4. Change people's reaction when I tell them " I am an  ovarian cancer survivor." ( It is not a death sentence.  At least right now for me it is not.) 
5. Have more doctors and researchers choose to focus their research on ovarian cancer

5 Victories 

1. Be able to share my story online through this blog and other sites
2. Wake up some mornings and cancer is not the first thing I think of ( like this morning) 
3. Be treated by wonderful gynecologic oncologists and nurses 
4. Have the opportunity to meet so many wonderful women 
5. Have the opportunity to interact with researchers at ASCO 

This was an interesting prompt. When I first started writing I wasn't sure I could find 5 good things but look at that I did. 

Dee

Every Day is a Blessing!

Want to know about Cancer Clinical Trials ?

I have been slowly increasing the number of groups and individuals I follow on my twitter account (@womeofteal). So since I attended the annual meeting of ASCO last year I decided to follow @ASCO (www.asco.org) and @CancerDotNet (www.cancer.net ). They post many interesting and informative links in their tweets.

Yesterday @CancerDotNet posted a podcast on Cancer Clinical Trials and Research. I listened and thought what an informative presentation. So I asked @CancerDotNet if I could share the podcast on this blog and they said yes.

So for those of you who want to learn more about cancer clinical trials in less than 10 minutes. Click HERE and listen to a very informative pod cast.

Do let me know if you found it interesting.

Dee
Every Day is a Blessing.

A Tagline for this Blog ~ Health Writers Challenge #26

Health  tagline.  Give  yourself,  your  blog,  your  condition,  or  some  aspect  of  your   health a tagline.

This is probably the shortest post I've every written. 

Women of Teal~ 

 Posting teal a cure is found!

Dee

Every Day is a Blessing!

Researcher and Advocate Interaction HAWMC 25

Third  person  post.  Write  about  a  memory  you  have  but  describe  it   using  the  third   person.  Use  as  many  sensory  images  (sights,  sounds,  textures,  etc.)

A Researcher and Advocate

Who is this women? The one with the shiny teal colored shirt and black slacks. She is carrying a notebook and heading toward me. Wait look at her name tag. She is a research advocate from the US. Oh boy, I wonder what she will ask me?

"Hello" she says. I said hello back and wait for the question or comment about my talk on support groups. 
 She says, " My experience with support groups is different than what your research has shown in Australia . My cancer center has a gynecologic cancer support group. I have been attending it for over 4 years now. We have a core group of six women but sometimes have as many as twelve  at our meetings. I think the key to our support group success is the fabulous social worker who facilitates the meeting. She makes all the women feel welcome. We talk about our health and also express our feelings - sad or happy or anxious.  This life is a journey and it may including losing some of these women to this disease but I wouldn't assume that just because that happens the group will not stay intact. The key is to reach out to newly diagnosed and those just out of treatment and invite them to join. That will keep your group alive. Well at least that is how it has worked with ours."

I say, "Thank you,  I am so glad your experience has been beneficial to you." She says, "Thanks for taking the time to chat." And then she slowly walks away. You know she might have a point about the moderator being key to the support group experience . 

Although this interaction happened last year at a medical meeting I really don't know how the researcher actually thought as I approached him or after our contact. At least I hope he took some time to think about what I said. 

Dee

Every Day is a Blessing 

My Women of Teal (HAWMC 24)

Health  Mascot.  Give  yourself,  your  condition,  or  your  health  focus  a  mascot.  Is  it  a   real  person?  Fictional?  Mythical  being?  Describe  them.  Bonus  points  if  you  provide  a   visual! 

My Health mascot has graced my blog since I started it back in 2007.

Say hello to "Women of Teal". I created her during an Art Therapy Class at the Cancer Institute of NJ a month before I began this blog. 

She wears a LiveSTRONG bracelet to show she is a survivor,  a cross to signify her faith , a shirt with homes to signify her family and she carries a shield with a Teal T, the color of ovarian cancer awareness, to help her fight her cancer every day.  

As my blog states"

Women of Teal is a play on the words "Man of Steel" used to describe Superman. I am an ovarian cancer survivor who has found other ovarian cancer survivors to be some of the strongest, most helpful women in the world. They are truly Women of Teal!"

Dee

Every Day is a Blessing!

Still Time to Attend the KOH Gala

Nick and I will be attending the gala. Looking forward to seeing some good friends.

ANNUAL GALA FOR CANCER RESEARCH 

 

The Kaleidoscope of Hope Foundation (KOH) will proudly host its Spring Gala on Saturday, April 28, 2012 .  Ovarian cancer advocates andleading researchers in the field are stepping out for an evening of dinner, entertainment, and fundraising at the Hamilton Park Hotel in Florham Park, NJ .  Cocktail hour and silent auction will begin at 6pm followed by dinner, dancing and award ceremonies.  This annual event honors the foremost medical professionals from around the country in the field of ovarian cancer research. 

 

Celebrated researchers will be awarded grants by the organization to pursue their cutting edge projects for this gynecological cancer.  Other honoreeswill be recognized for their notable contributions and unwavering support for the KOH Foundation and for the cause of ovarian cancer.

 

This year’s grant recipients for ovarian cancer research  include Alison Karst, Ph.D  of The Dana Farber Cancer Institute in Boston, Massachusetts, Roisin O'Cearbhaill, M.D. of Memorial Sloan-Kettering Cancer Center in New York City and Brian Slomovitz, M.D. of Atlantic Health Systems in Morristown, New Jersey. Each researcher will receive funding for projects that will advance ovarian cancer research.

 

A highlight of the evening will be the presentation of the Kaleidoscope of Hope Founders’ Award.  This prestigious award recognizes an individual or group whose outstanding efforts both serve and support the ovarian cancer community.   The recipient of the award for 2012 is the Lyndhurst Board of Education for their district wide fundraising activities for this women's health cause.

 

Ovarian cancer claims the lives of nearly 15,000 women annually in the United States.  It is the fifth leading cause of cancer death in women  and the leading cause of gynecological cancer death  in the US.   It is for this reason that KOH actively supports awareness education and funds research initiatives for early detection, improved treatment strategies and the ultimate cure for ovarian cancer.

 

The Kaleidoscope of Hope Foundation is a registered non-profit organization that serves as a primary advocate for ovarian cancer activism in the state of New Jersey.  Since its inception 12 years ago, KOH has pursued its mission to raise awareness and fund research  for this disease.  Founded by three ovarian cancer survivors, KOH has  raised over $2 million for ovarian cancer research projects at various highly acclaimed hospitals and  renowned medical institutions throughout the United States.  

 

For more information, donations  and  on-line registration , please visit our website at www.kohnj.org.   Kaleidoscope of Hope Foundation, PO Box 1124, Madison NJ   07940.

 

Dee 

Every Day is a Blessing!

 

ASCO 2012 (HAWMC 23 My choice)

Health Activist Choice Day 2! Write about whatever you like.


I am one happy cancer research advocate. I learned last week that I will be receiving a scholarship from the Conquer Cancer Foundation to attend this year's ASCO (American Society of Clinical Oncologists ) Annual meeting in Chicago. Their goal is to improve cancer care and prevention. The Annual Meeting is the largest conference on cancer research in the US with over 25,000 cancer researchers attending the meeting.

Last year I attended the meeting as a Research Advocacy Network Focus on Research Scholar . I met so many dedicated advocates and enjoyed interacted with researchers from all over the world. I learned the results of a large ovarian cancer screening study, the latest Avastin trials results as well as the difficulties researchers face in recruiting patients into clinical trials.  I was thrilled to be able to talk directly to researchers who were presenting their posters and appreciated the time they took to explain the experimental design to me.

My attendance this year will continue to focus on Ovarian Cancer, Survivorship and Clinical Trial Design presentations and poster sessions. In addition to updating my blog from the meeting when I return I will develop a handout and PowerPoint presentation "Cancer Research for Survivors" with pointers on clinical trials, study design and how to read medical journal articles and posters.
 Thank you Conquer Cancer Foundation for giving me the opportunity to improve my skills as a cancer research advocate.

Dee
Every day is a Blessing!

A Short Note - HAWMC 22

The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?




I would post this note at grocery store check out lines. That is where I am usually asked to donate a $ toward cancer fundraisers.  


***************************
Cancer Survivors          
don't all wear pink         
some wear teal or blue 
or grey or purple or ...    
***************************




Dee
Every Day is a Blessing!

Painful Women Painful Women HAWMC 21

Health  Madlib  Poem.  Go  to  :  http://languageisavirus.com/cgi-­‐bin/madlibs.pl  and  fill   in  the  parts  of  speech  and  the  site  will  generate  a  poem  for  you.  Feel  free  to  post  the   Madlib  or  edit  it  to  make  it  better. 

So I followed the directions above and this is what I ended up with. 

Painful Women Painful Women 

feeling i have never known , quickly beyond
any tragedy , your friends have your back :
in your most frequent scans are things which diagnose me,
or which i cannot touch because they are too buried

your pale look loudly will sadden me
though i have used myself as a test ,
you wander always hope by hope myself as love wish
(delighting happily , never) her confused life

or if your survive be to anticipate me, i and
my future will whisper very quietly, courageously,
as when the pain of this cancer is
the floating gracefully everywhere piercing;

nothing which we are to want in this time here
the full of your anxious surgery: whose chemotherapy
now me with the recovery of its life,
caring family and faith with each sleeping

(i do not know what it is about you that comes
and goes; only something in me wishes
the support of your friends is better than all words)
knowledge, not even the power, has such high standards

by Dee and e.e.cummings


Not my best poetry but it was fun to do. 


Dee 
Every day is a Blessing!

A Cure? HAWMC 20

Miracle  Cure.  Write  a  news-­‐style  article  on  a  miracle  cure. What's the cure? How do  you  get  the  cure?  Be  sure  to  include  a  disclaimer    ;) 

Many times in this blog I write about reading news media articles where they tout a cure for cancer. I stress how we should be savvy advocates and be able to separate the good news reporting from the bad. Thanks Gary Switzer, Health News Watchdog blog (http://www.healthnewsreview.org/blog/) for providing the steps for evaluating the health news articles we read. So it is a bit difficult for me to write this entry which is basically a bad news article. But no one said the prompts this month would be easy to do. 

Here is this totally fictional account of a cure for ovarian cancer. 

CURE Found for Ovarian Cancer

Ten years ago researchers at the Super Cancer Center  reported that they had developed a drug that killed ovarian cancer cells in mice. Ovarian Cancer is the most deadly gynecologic cancer. Researchers at the Center were able to develop the drug , RuiNA, that would disrupt the RNA of  epithelial ovarian cancer cells. Epithelial is the most common type of ovarian cancer. RNA is used during cell reproduction. By disrupting that RNA sequencing the cells are unable to replicate. Dr. Masters is please that not only did the drug work in mice  but in phase I, phase II and phase III clinical trials. 


More than 50% of the women in the phase III trial were diagnosed as stage IV patients (metastasized disease. ) of those 725 women , 700 were disease free within the first three months of treatment. 
RuiNA was taken daily in pill form by the women in the trial. The 200 mg pill costs  $2150 for a month of treatment and will be covered by insurance. RuiNA will be produced by Bristol- Merck beginning next year. This is a major step in the treatment of Ovarian Cancer. Work still remains in finding a screening test. 




Still part of me wishes this was true. 


Dee
Every Day is a Blessing!

Dinner Guests - HAWMC 19

5  Dinner  Guests.  ␣Who are five people you'd love to have dinner with (living or deceased)  and  why?

Well this is an interesting prompt. I'll give you the names of those I would love to meet in person. 

Walt Disney

Pope John Paul II

Cesar Milan

Rosalind Franklin

Werhner von Braun

Now here is why I chose these people and why they were the first ones to come to mind. 

Walt - I love Disney World and Disney animation. I also think he is a creative genius and would love to hear where his ideas came from.

Pope JPII- I have always respected how JPII was able to connect with so many people- young, old , from different ethnic and religious backgrounds. I also respected how he handled his suffering and pain during the later years of his life.

Cesar Milan- I am a dog lover and I have read Cesar's book. He has had an interesting life and would love to have him meet my dogs.

Rosalind Franklin- I would like to talk to her about her DNA research and how it was to be a female doing such ground-breaking research. I'd love to ask her what areas she would investigate now to find a screening test for ovarian cancer.

Werhner von Braun- Since grammar school I have loved science and space flight. I would like to hear how Werhner decided to study aeronautics and how he adjusted to living in the United States. 

It sure would be an interesting dinner. 

Dee

Every Day is a Blessing!

Feel the Pain...HAWMC 18

Open  a  Book.  Choose  a  book  and  open  it  to  a  random  page  and  point  to  a  phrase.   Use  that  phrase  to  get  you  writing  today.  Free  write  for  15-­‐20  without  stopping. 

This morning I picked up the book " Words of Wisdom for Women" by Rachel Snyder. My friend and I are always sharing books. Recently she gave me this book and said "This is not the type of book you sit and read it cover to cover. Just pick it up and read a passage. That is what I have been doing the past few weeks. 

This morning it opened to FEEL  - "Feel the pain , feel the joy , until you feel you will evaporate." 

Well on this cancer journey I must admit I have felt the pain. Emotional pain from hearing the words you have cancer and you need chemotherapy. Emotional pain from seeing your family and friends worry about you. Emotional pain from getting the phone call where your doctor says "I got the results of your CT back - we found two spots on your spleen and liver". Emotional pain from watching your hair fall out. Emotional pain from looking in the mirror and not recognizing who you are. Pain from worrying about a recurrence. 

And oh there is lots of physical pain too from the surgeries, from the neuropathy, from the Neulasta shots, scalp pain from loosing your hair and pain getting up out of bed. 


But there is Joy in hearing "There is no evidence of disease". Joy in the first day you go out without a scarf or wig. Joy when you stay awake all day!  And of course Joy in  experiencing the special occasions you never thought you would experience- a daughter's weddings, a son's graduation, the birth of a grandson and trips to places you always wanted to visit ( loved Switzerland and Alaska) . And of course the Joy of time.


I hope you find lots of Joy today!


Dee
Every Day is a Blessing!

I Finally learned to Say No - HAWMC

HAWMC 16 Learned  the  Hard  Way - What is a lesson you learned the hard way. Write about it for 15  today. 

The lesson that took me the longest to learn was how to say No. It was not until I was diagnosed with cancer did I really learn to say No! 

Sure I would try to say no before that but it really didn't take much to twist my arm to get me to volunteer for something. So tell me what a good job I would do or that no one else volunteered and our kids wouldn't have a troop and I caved. So I was a girl scout leader, a CCD teacher, sang in the choir, chaired a Middle States Accreditation committee, took on an extra class and taught a class on internet safety to parents. Now don't get me wrong, those were not bad things to volunteer for but at the time it really did add stress and took time away from my family. 

But once I was diagnosed with ovarian cancer and the future was so unsure, time with family and friends became more important.  It was easier to say NO when I did not know if I would be physically able to help out. I began volunteering for things I was really interested. And  in the process learned more about myself. I still volunteer and have still had my arm twisted once or twice. And by really loving the things I volunteer for makes me a more dedicated volunteer. 

And you know what I am actually considering singing in the choir again at my new church. La la la....

Dee

Every Day is a Blessing!

I Agree with the USPSTF

The US Preventative Services Task Force is updating its Screening for Ovarian Cancer document. See the complete document here. The recommendation follows.

" The U.S. Preventive Services Task Force (USPSTF) recommends against routine screening for ovarian cancer. 
Grade: D Recommendation.

D—Not Recommended: The USPSTF recommends against routinely providing [the service] to asymptomatic patients. The USPSTF found at least fair evidence that [the service] is ineffective or that harms outweigh benefits." 

They have posted a great info sheet so women can better understand the conclusion they have reached. http://www.uspreventiveservicestaskforce.org/uspstf12/ovarian/ovarcancerfact.pdf

The Task Force does not believe that the general population should receive a routine CA-125 blood test or an ultrasound( transabdominal or transvaginal) as screening for ovarian cancer.

Why did they make this recommendation?

• Routine screening with CA-125 and Ultrasound does not reduce deaths from Ovarian Cancer
• The task force is moderately certain that harms from screening ( surgery etc) outweigh the benefits

NOTE: The recommendation does not apply to those at risk- women with BRCA mutations or women with a history of ovarian cancer in their  family.

The decision to not recommend screening asymptomatic women was not made in a void. The document is based on the results of large studies.

1. The Prostate Lung colorectal and Ovarian Cancer Screening trial had 78,000 participants. (I wrote about this trial last June after hearing results at the ASCO meeting. )There was no difference between the stage of diagnosis or number of deaths from ovarian cancer in the screened group vs the non-screened group.    Buys SS, Partridge E, Black A, et al. Effect of screening on ovarian cancer mortality: the Prostate, Lung, Colorectal and Ovarian (PLCO) Cancer Screening Randomized Controlled Trial. JAMA.2011;305(22):2295-303.
2. The ongoing UK Collaborative Trial of Ovarian Cancer Screening preliminary results show that l ess than 1% of the women had surgery after the screening process. Of the 16 women who underwent surgery , 11 had false positives ( no cancer was found) . There were a number of women who had complications from the surgery . Menon U, Gentry-Maharaj A, Hallett R, et al. Sensitivity and specificity of multimodal and ultrasound screening for ovarian cancer, and stage distribution of detected cancers: results of the prevalence screen of the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS). Lancet Oncol. 2009;10(4):327-40.

One thing I learned last year as a Focus on Research Scholar was that a biomarker/ screening test must be specific and sensitive. The CA-125 is not specific ( it can be high from other cancers and gastrointestinal illnesses) nor is it sensitive enough that the cancer may be detected in early  stages.  

This article by Dr Otis Brawley discusses the recommendation and  why we need a screening test for ovarian cancer.
http://www.cnn.com/2012/04/13/health/ovarian-cancer-test-brawley/index.html

I know many women will not agree with this recommendation but as a scientist and a survivor whose CA-125 was normal on recurrence , I agree with the conclusion drawn by this Task Force.

Now let us get to work and fund the research to find a better, specific and sensitive screening test for Ovarian Cancer!

Dee

 Every Day is a Blessing!