Showing posts with label HAWMC. Show all posts
Showing posts with label HAWMC. Show all posts

Monday, April 30, 2012

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!

Saturday, April 28, 2012

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

Friday, April 27, 2012

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!

Thursday, April 26, 2012

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!

Tuesday, April 24, 2012

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.

Woman of Teal

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!

Saturday, April 21, 2012

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!





Friday, April 20, 2012

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!

Thursday, April 19, 2012

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!

Wednesday, April 18, 2012

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!


Tuesday, April 17, 2012

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!

Saturday, April 14, 2012

Dream Day HAWMC 14


My  Dream  Day.  Describe  your  ideal  day.  How  would  you  spend  your  time?  Who   would  you  spend  it  with?  Have  you  had  this  day?  If  not  ␣  how  could  you  make  it   happen? 


This is a tougher prompt to respond to then I thought it would be. I can't seem to make up my mind. The only thing I was certain about was that all these dream days would be with Nick . Why? Because when I experience things without him it just does not have the same feelings. 


So far my dream day could be spent in


Alaska- Trip to Denali - did this 
Alaska- Horseback riding - did this
Rome - Vatican - did this
Hawaii - Big Island Kilauea volcano- did this
Hawaii - Perfect evening sunset on the beach and the star filled night- did this 
California- San Francisco , golden gate and seals - did this


Wyoming - Yellowstone National Park - tour just looking at the mountains- on my bucket list 
Australia - Sydney a city tour and evening beach -on my bucket list
England - London and Stonehenge - on my bucket list


Kansas - Manhattan Visiting Theresa , Andy and John - have done this but would love to do it over and over 


See how hard it is to narrow it down? I would love to redo some things I've experienced already and would love to have some new experiences. 


So how about I just decide that my Dream Day would be any day where I can be outside in the sun preferably the mountains by a lake would be great. I love nature and the wonderful colors  you find in the great outdoors. Of course Nick, Terry ,Andy, Matt and John would be there too.  No computers allowed!


Dee
Every Day is a Blessing!

Friday, April 13, 2012

10 Things I Can't Live Without - HAWMC# 13


10 Things I  Couldn't Live Without- Write  a  list  of  the  10  things  you  need  (or  love)   most.

This will be a short post. 
I can't live without:
  1. My family - love them all !
  2. My friends- wouldn't have made it this far without their support
  3. My gyn-onc - (actually wouldn't be here making up this list without her)
  4. Amber, my dog - She just makes me laugh and that is good for the soul
  5. My Iphone - How else would I keep in touch with family who live far away
  6. My Macbook - Those Google video chats are the best 
  7. Cannoli  - or maybe just the filling MMM Good 
  8. new mission style recliner - Best place to relax in my house 
  9. Family photos - Love remembering good times 
  10.  Trips to Disney - To me it is Magical

Dee
Every Day is a Blessing! Happy Friday the 13th. 







Thursday, April 12, 2012

This morning.. and hair..HAWMC 12

Stream  of  Consciousness  Day Start with the sentence “This morning I looked in the mirror...” just write, don’t stop, don’t edit. Post!


This morning I looked in the mirror and saw how long my hair has gotten. I have not had hair this long since Theresa and Andy got married in 2008. The difference is that this time it is grey. I have been thinking about getting it dyed but that is so much trouble . Every month not just a hair cut but a touch up or hours getting it dyed in addition to the hair cut. Plus my hair dresser - who I have gone to for years says she loves my color and that people pay to have my type of salt and pepper look. Sometimes I think it makes me look old some times I think it makes me look younger. Oh I just don't know. 


I am thinking maybe I don't want to dye it cause after I did that my cancer came back and I lost it any way. Why bother spending all that money to look younger. I am actually pretty happy being the age I am .I am aware of more things , and put things in priority differently than I did say 15 or 20 years ago. I am ok with me so why shouldn't I be ok with my grey hair.  Plus I want it to grow longer. 




If I have to loose it again then I will definitely have to get a wig that is grey like this. No more light brown/ golden brown look for me. Later this year I have to renew my drivers license. The last time I renewed it was 4 months after I finished chemo so in the photo I have no hair.  Well not no hair but very little. Might actually make it to August this year with hair- wouldn't that be nice.  Then I can have a photo with grey hair. 


Thinking now about a neighbor who lost her battle with cancer yesterday. I didn't know her very well  since she was in treatment since we moved here two years ago. When we moved here I was not really sharing with very many people that I was a cancer survivor. I wanted to make friends without that hanging over my head. Anyway the day I met her by the pool I knew she was wearing a wig and someone then told me she was  in treatment. I don't know what kind - just it was not breast cancer- that was from another neighbor who is a breast cancer survivor. Rest in Peace Lynn. Will go over and sit shiva later. 




Dee
Every Day is a Blessing.

Wednesday, April 11, 2012

Theme song HAWMC #11

Theme  song.  Imagine  your  health  focus  or  blog  is  getting  its  own  theme  song.   What  would  the  lyrics  be?  What  type  of  music  would  it  be  played  to?   


I am no song writer so instead I will pick a song that I began listening to when I was first diagnosed . Love this song. 
Tim McGraw's Live Like You Were Dying:


He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?

An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:

"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."

Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it? ...



I have never gone sky diving , nor climbed a mountain , nor ridden a bull but I have seen the Alps , visited Denali National park in Alaska and been here to celebrate some incredible family milestones.  Tomorrow is indeed a gift!


Dee
Every Day is a Blessing!

Tuesday, April 10, 2012

Dear Me... HAWMC 10


Dear  16-­‐year-­‐old-­‐me.  Write  a  letter  to  yourself  at  age  16.  What  would  you  tell   yourself?  What  would  you  make  your  younger  self  aware  of? 

Dear  Teen Me,

I know you love science and want to be an engineer. That is great. In the past year you thought you wanted to be a nurse but really don't like being a candy stripper. There is more to medical careers than cleaning bedpans, delivering flowers, cards, food trays and feeding people . BTW, the man you feed lunch to every Saturday,the one who had the stroke, really appreciates the company.

So go ahead and apply to engineering school. Stick with that even when people say you won't be successful. But "Warning - Will Robinson" you and electrical engineering courses do not get along- stick with the biology,chemistry and thermodynamics courses.  You will learn about distillation and fermentation. Go more toward the fermentation. Let your senior project ( it will be about enzymes) guide you to pursue a more medical related research career. What you work on might impact your life and the life of Roberta and so many others.

Oh, make sure you take that first job with Colgate. There is a great guy who works there and you will have a really terrific life together - kids and all.

Enjoy !

Love,
Middle Age Me




Dee
Every Day is a Blessing!

Monday, April 9, 2012

HAWMC 9 Keep Calm ...


 Keep  calm  and  carry  on.  Write  (and  create)  your  own  Keep  Calm  and  Carry  On   poster.  Can  you  make  it  about  your  condition?


Ovarian Cancer know your body

The symptoms of ovarian cancer -  bloating, frequent urination, pelvic or abdominal pain,difficulty eating - may resemble other gastrointestinal diseases. But if after two weeks those symptoms continue you need to see you gynecologist. Tell him/her exactly how you feel because You Know Your Body Best! You know that you feel differently and you are the expert in how you feel.

As a gynecologic oncologist once told me " Ask your doctor to prove to you that you don't have ovarian cancer"

Dee
Every Day is a Blessing

Sunday, April 8, 2012

Happy Easter and HAWMC -Best Conversation

#8  Best  conversation  I  had  this  week.   Recap  an  awesome  conversation  you  had  this  week. 
I wrote this yesterday so that I could post it today. Happy Easter / Passover everyone.

It wasn't really a conversation but more a text exchange with a dear friend I met 4 years ago in my gynecologic cancer support group . She is not up to talking on the phone now so I have taken to texting her.

Me: "Me again . Didn't know I could be such a pest huh? ...Do you or _____  need anything ? Let me know. "

Her: "Thanks for the notes and the beautiful prayer shawl. I could feel the warmth and love and it is great when I am sitting up. My bed is by the back door so I have fresh air all afternoon and sunshine too..."

Me: " Glad you like the shawl and that today you are feeling better. Honestly if you need help- food shopping call me. Need a choc bunny?  I can bring one over. Hugs my friend. "

Her journey has been difficult . I am blessed to have her in my life.




Dee
Every Day is a Blessing!

Friday, April 6, 2012

#6 HAWMC Haiku- Symptoms


#6 HAWMC  Health  haiku.  Write  a  haiku  about  your  health  focus.


Symptoms


Bloating, feeling full
Ovarian cancer clues
See your doctor now!

Dee
Every Day is a Blessing!

Wednesday, April 4, 2012

#4HAWMC - I write about my health because...

#4 I write about my health because... Reflect on why you write  about your health for 15 minutes without stopping. So here goes...

I began writing my blog in 2007. I am an ovarian cancer survivor and had attended the first Livestrong Survivors Summit the year before. At the Summit many survivors had spoken about how they shared their story online in blog form and stayed in touch with family and friends that way too.

So in December that year I began writing this blog. Below is my first post.

Today I took the plunge and decided to make this blog. I guess you could say it is an early New Year's resolution. In addition to sharing my thoughts on this journey, I will post links and information relevant to women diagnosed with ovarian cancer in New Jersey. Since I am a strong supporter of the Lance Armstrong Foundation I will also post items relevant to LiveStrong activities from Challenges to LiveStrong Day.


It was a simple a blog back then with some links to other blogs that I read. I have come a long way since then. I now have multiple pages to my blog - resources, local events, support groups,women of teal page ( honoring survivors and those who lost their lives to this disease),  about me and and a news page.

Back in 2008 this blog was the way I communicated about my recurrence. I wrote about my choices for treatment, when I had my surgery , when I started chemotherapy, the time I spent in the hospital after a serious reaction to carboplatin and about finishing treatment and becoming NED( no evidence of disease) again .

And since then I have been, as ovarian cancer survivors say "dancing with NED", I have taken to writing about ovarian cancer research.  I look at news articles about ovarian cancer and then read the related journal articles and then put that research into layman's terms and write about it on my blog.  I also try to relate if the study will impact my reader's lives. Don't get me wrong if there is a fun event or fundraising activity taking place in NJ you will find me writing about it on this blog.

I hope to continue sharing my story and important research studies for years to come.

Dee
Every Day is a Blessing!

Tuesday, April 3, 2012

#3 HAWMC Superpower Day

HAWMC #3 prompt: If you had a super power what would it be. 

As soon as I read this prompt I knew exactly which super power I would want to have. My friend is currently in treatment for metastatic endometrial cancer and is in a tremendous amount of pain. The  power to take away the pain caused by cancer would be my super power. Not just pain from ovarian cancer but pain caused by any cancer.

 I would travel around the world visiting patients in cancer centers and their homes and with a gentle touch remove the severe pain wherever they might be experiencing it in their bodies. I have seen too many of my loved ones and friends deal with pain that is uncontrollable even with the most powerful narcotics. This would make one part of their cancer journey a  bit easier.

Dee
Every Day is a Blessing!