CDC Symptom Diary Card

Friday, April 27, 2012

Rivkin Center awards grant for cognitive study


Heidi Gray, MD

University of Washington

Behavioral and neural indices of cognitive rehabilitation in ovarian cancer
Millions of ovarian cancer survivors live with residual symptoms of impaired thinking and impaired memory severe enough to interfere with basic activities of daily living and work. However, very little is known about how to treat problems in cognition. Pharmacologic interventions have only been modestly helpful, if at all, and not all patients desire or are able to take medications. Dr. Gray will examine the ability of a 7-week cognitive rehabilitation intervention to improve memory and thinking abilities in ovarian cancer survivors. In addition, the project will measure changes in brain activity patterns from the treatment using neuroimaging.

Marsha Rivkin Center for Ovarian Cancer Research | supporting research in honor of our wives, mothers, sisters, and daughters
The Rivkin Center is delighted to announce the recipients of its 2012 Scientific Grants. With another record-breaking year in grant funding, the Rivkin Center has awarded over $1 million in research grants to better understand and combat ovarian cancer. This year 3 Scientific Scholar Awards and 10 Pilot Study Awards were conferred in addition to funding for the second year of the two-year Challenge Grant.
one-year award of $60,000, our Scientific Scholar Award is intended to assist promising young laboratory and clinical scientists in pursuing a career in ovarian cancer research. For more about our Scientific Scholars and their funded projects, click here.
Christina Gewinner, PhD
Anne Noonan, MB BCh BAOBrigitte Theriault, PhD
  2012 Skacel Family Scholar
  2012 Gilman Family Scholar 
  University Health Network    
xUniversity College London  National Cancer Institute
one-year award of $75,000, our Pilot Study Program will support investigator-initiated pilot projects in all areas of ovarian cancer research. For more about our Pilot Study Awardees and their funded projects, click here.
Matjaz Barboric, PhD
Lavakumar Karyampudi, PhD
  University of Helsinki  Mayo Clinic 
Heather Cunliffe, PhDIlona Kryczek, PhD
  Translational Genomics Research Institute  University of Michigan
Tyler Curiel, MD, MPHFang-Tsyr Lin, MD, PhD
  Univ. of Texas Health Science Center at San Antonio  Baylor College of Medicine
Heidi Gray, MDMeera Nanjundan, BSc, PhD
  University of Washington  University of South Florida 
Shelley Hooks, PhDJeremy Stark, PhD
  University of Georgia  Beckman Research Inst. of the City of Hope
The 2011 Scientific Challenge Grant, a two-year, $150,000 research grant focuses on the origins of ovarian cancer with the goal of accelerating the early detection of ovarian cancer. For more about our Scientific Challenge Grant, click here.
David Bowtell, PhD
  2011-2013 Lester and Bernice Smith Fellow
  Peter MacCallum Cancer Center

Tuesday, April 24, 2012

Cancer Lifeline needs volunteers on May 18th


Cancer Lifeline’s mission is to optimize the quality of life for all people living with cancer

Volunteer at Cancer Lifeline
Date: Friday, May 18 2012
Time: 10am-4pm
Number of volunteers needed: 4-10
Contact: Amanda Boyle, Development Manager at Cancer Lifeline
            206-832-1273 or

Description of what we will be doing:
Help to beautify the healing gardens at Cancer Lifeline. We have three gardens on the upper floor that need renovation and care. We have one additional garden on the lower level which also needs attention.

 Here are a few tasks that need to be done for the facility:
  • Weed and tidy garden beds
  • Pressure wash decking and chairs on all decks
  • Sweep decks
  • Paint awning/pergola a new color, scrape any excess paint.
  • In downstairs garden, sand and treat the wooden pergola. Remove current vines.
  • Clean candle lamps in meditation garden
  • Refinish and sand benches
  • Plant new items for summer
  • Replace soil
  • Clean fountains
  • Trim back leaves, branches, and climbing vines as necessary
How it benefits the community and Cancer Lifeline:

Our healing gardens are an important aspect of Cancer Lifeline because it provides participants and building visitors with a lovely outdoor space to call their own. After dealing with heavy thoughts and burdens about a cancer diagnosis, these gardens can provide a new kind of reflection through calming fountains, sunshine and conversation in the outdoors. Cancer Lifeline is a special place of sanctuary and healing; we’d like to preserve its special quality for years to come with garden beautification efforts.   

The gardens were designed and installed by the U of W’s Landscape Architecture students. Planning the Healing Gardens was an amazing experience for students, clients and staff.
The Celebration Garden (first garden – west-at top of back staircase)

Theme: there are often many things—small and big that can be celebrated in the process of healing. This is our “clients’ garden.”

A horticultural therapist planted different herbs as the basis for client and staff involvement in this garden. 

The Reflection Garden (second garden-west)

Theme: Healing can take place through reflection and meditation

The fountain – a wonderful cascade of soothing sound – was built in honor of our Executive Director Emeritus’ husband.  There is a feeling of tranquility with the soft murmur of the bamboo plants, a wonderful quiet space.

 The Earth and Sky Garden  (largest garden-east)

Theme: the connection between healing, and the earth and sky

Our largest garden, fitting for classes outdoors or for a lunchtime meet-up for clients.

 Lower Level Garden  (smallest garden, south side of building lower level)

    A bench and a wooden pergola provide a nice sanctuary to the building.

Cancer Lifeline is very dear to my heart.  

If you are in the Seattle area and have some time to help, please join us! 

Peace to you.

Thursday, April 19, 2012

New OC NON-Screening Guidelines abandon women

I have been thinking about the results of the Ovarian Cancer Screening guidelines for several days.  Today I am finally going to share my gut feelings about this.  Although I respect the medical community and their research, I believe that at the end of the day, this is a total abandonment of women and will kill many.

The truth is that the only reliable way to detect the early stages of ovarian cancer is via an expensive PET scan or other equally complex scanning.  A CT scan is not reliable.  A blood test is not reliable. A transvaginal ultrasound is not reliable.  A bi-manual pelvic exam is not reliable.  BUT...any screening is better than no screening!

How do I know that PET scan is reliable?  My brilliant amazing gyn-oncologist spotted a suspicious situation with a tumor on my liver via a CT scan and ordered a PET scan.  The PET scan ironically revealed that the liver tumor was not active, but there were THREE other active tumors, breathing, living, ready to mature into larger tumors at some point in the future.  It is a miracle that my recurrence was caught in the early stages.

My CA125 was only 15.  I had no unusual symptoms other than increased fatigue.  My constant abdominal pain is not anymore a symptom because it is constant.

My stand is this:  Either we allow all women, and I mean ALL women, the opportunity to receive a PET scan if there are any subtle signs of ovarian cancer, (not just the big 4, but weird abdominal pain, low back pain, unusual bleeding, increased fatigue)  and make it affordable............


We declare that all ovarian cancer is a chronic condition so that we can apply for benefits to live what is left of our lives in dignity.

We can only apply for a limited number of benefits while in active treatment (corrected comment).  When we are declared NED, we cannot apply for new benefits, but we can keep benefits we have.  The problem is that this disease does make us less able to work full time and the medical expenses are ridiculous.

I am so grateful to have this time now, even in a recurrence and being on chemo.  BUT, I am not really living the life that I'd like.  I also want to add that I am not saying that I have no control over my future or anything like that, but it is very difficult to be a cancer patient, find work and keep it.  So, yes we do need to reach inside and find our entrepreneurial spirit.........and I am on a mission of raising awareness.  But if this is really true, that the recommendation is that there be no real active screening, than it is almost a certainty that all ovarian cancer diagnosis will be advanced.

There is this false belief that people with cancer somehow find a way to live their last years checking off the items on their bucket list.  Well that is great, but it takes money.

I had to go back to work before I could do some of the travelling that I wanted to do.  Now all I can do is just do all I can to keep my little part time job so that I can keep my apartment and car and do little things.  I am not starving, and am getting by, thank God!  But, really?  Is this it?  The rest of my life is going to be spent paying bills to get chemo to live to pay bills to get chemo to live to pay bills.

The extra money (like thousands of dollars and free time) to travel, just be next to a dolphin once, take a month and travel, see a broadway show, take my mom on a short cruise, yada yada yada.....well I'll pry have to write my novel and make the money to do that because what I'm doing now won't cut it.

My point is that if the CA125 had been given to me at the time the oncologist in California denied it, I could have been detected at an earlier stage.  Thusly I would have not had as complicated of a surgery and maybe not needed chemo.  That would in turn have created a body that would be better able to work a higher paying job that could have created a better lifestyle with more flexibility.  I didn't even get a CT scan of my pelvis when I had glaring symptoms!

At the end of the day, the new guidelines say not to screen for ovarian cancer. The result is that insurance companies can now deny payment for legitimate screening tests and women will only be diagnosed with advanced ovarian cancer.

I am not being negative, I am saying we need to fight for what we know works!  It will be decades before a blood test is proven reliable.

A PET scan does work and we need them to be readily available and affordable.  That's it, that's the only solution we have that will work until scientists come up with a blood test or something less complex.

PET scans do have some risks, but really it's minor compared to death.

That's where I stand.

Wednesday, April 18, 2012

Crying all day

Today has been horrible.  It hit me like a brick that being compromised, not able to do all that a person wants to do in life, when it comes to being with the people you love, is just devastating.  I had been crying and crying and crying and praying for God to give my mom just a few days of freedom from her trials and angst.

It all started with the image of my mom being able to drive her grand kids to a vacation park, play in the sand or have a picnic in the mountains.  For some reason this image caused an emotional break today.  A total collapse.

A miracle happened.  She called to say that her kidneys are doing better.  There is a possibility that she may be able to take a break from dialysis.  WOW  Now this needs to be tested and be verified, but even a little break would improve everything.  She is so much healthier since her heart surgery.  I have desperately wanted for her to have some normalcy.  I have been praying and who knows exactly why but this is such great news.  She is still in shock.  This is her above, isn't she so beautiful!!!!!!

When we go out together, and people learn she is my mom, the look at me like I'm lying.  Really?  Really?  They say to her how wonderful she looks!  They always think I'm her sister.

I have been really emotional all day.  AND I have this weird numbness on my face.  I left a message for the gynonc, and I'm sure they will address it.  My right upper gum, part of the right side of my nose has been numb.  This has been since chemo, but it wasn't too noticeable or I thought it would get better.  Not sure.  Maybe it's just a dental issue (I lost a front tooth to chemo about 6 months ago and wear a prosthetic).  Maybe my prosthetic needs to be replaced.  I'm certain that is it............but it's just weird.

I'm feeling trapped and stuck.  I want to fly.  I want to run away.  This news about mom is just so precious and uplifting.

I created a little bluegrass station on Pandora, and I love it.  It's so fun to listen to bluegrass.  It's like so awesome.  It gives me little happies.

I am so so so so so so so so so so so so hugely happy for mom, thank you God!!!!!!!!!!!!!!!!!!

What happened to simplicity?

I am longing for simpler days and simple life.  Longing for less complications with everything from paying bills, grocery shopping, using my computer to just having a cup of coffee.  Everything is so complex and difficult to do these days.

Remember when you were a kids you had a circle of local friends who you went to see?  You rode bikes and played house and played store.  You built far away places by hanging blankets on the clothesline and told spooky stories.  You explored the local field and thought you were in another country.  You went to a friends house and waited for mom to call out your name for all to hear, "Denise come home, dinner's ready!"

I desperately wish that kids today had those "kinds" of days, to play freely and run around the neighborhood.

Every day we are here is a gift and we have to schedule every moment now, all of us do.  There is no waiting until tomorrow to find "a better time" to laugh or shine or cry or do nothing but enjoy the birds singing.

Today is the first day since my second round of carbo-drip desensitization that I have felt good enough to get out and about. It's been tiring but full.  Got to see mom, went shopping and had coffee.  That was super great.  Just to sit at the coffee house and watch people and sip sip sip.  I then did my job from home and am exhausted, but OK.

Do all  cancer patients go through this? Sometimes all I can do is think about my past mistakes and just tear my hair out wishing for second chances or a new opportunity.  But those moments are gone.

I am loved by so many amazing people, but I am not sure I'll ever be able to accomplish anything worthy of being proud.  Just living, literally.  In this world of over achievers and extreme artists, athletes, intellects, scientists, filmmakers, geeks and doctors, I am but a simpleton.  All I have to offer is my heart and I hope that will do.

My not having any children to help me as I age, I fear, has placed a level of worry on others that was never intended.  We never expect ourselves to be "in need".  Luckily I have an amazing family and circle of friends who are willing to help me if I need it.

Never allow a doctor or anyone to tell you not to have children.  I never should have listened to that doctor when I was young, my whole life would be different.  I could have had a normal life and a family.  Some of you may not know this but when I first got arthritis at age 15, my rheumatologist told me not to have kids because I would not be able to take care of them.  Medicine for RA was bad and he may have been right, but that was still my choice to make, and I let him make if for me.  I was never the same after that and was and felt abnormal.  I still cannot get over the irony that I have ovarian cancer when I had been told not to have kids.  If I would have been given the option to remove my ovaries ( especially now knowing that I have the BRCA 1 mutation) I would not have gotten ovarian cancer.

Sorry, I guess I'm not over that ....................sorry for the repetition.  I just don't understand the cruelty.

I didn't want to heal from cancer to be thrown back into the rat race!  I just can't resolve this inner turmoil of needing money to pay bills to exist to pay bills which need money. I don't want all this chemo to be wasted on a life of meaningless daily drills of bills and pills.  I must nourish my creative spirit now.

I am going to write a book, I have a very unique experience that needs to be told, that you don't know about yet..ha ha ha. That is all I have to offer.

That is the only creative thing I can hands are crap, can't paint.  Can't draw, can't sing. but do love to dance.  Seriously, my hands are bad and using them to create won't work.  Maybe I can paint with my feet.  Hmmmmmmmmmmmmm

Anyway, you may have figured out that chemo has an effect on our emotions and I am praying to make a difference. I tend to ramble when I have so many conflicting emotions inside.

I just wish things could be simple...............I pray each of  you can find peace and simplicity and hang onto it forever.  Love your family more than anything...........

Love and kisses and thanks for putting up with kitty Marilyn says hi tooooooo

Monday, April 09, 2012

Up for more Carbodrip? Must meet Marilyn first, my kitty cat friend

Before I go into anything serious I just have to share a little video I made of Marilyn.  Marilyn is my new kitty cat, who was previously at a shelter and then a foster-family.  Her foster parents were so nice and took such wonderful care of her.  Marilyn is so sweet and a true little lady.  She is polite and clean and really amazing.  She loves to play with her birdie toy and most of all she loves to be cuddly.  Exactly the kind of cat I wanted.  Being back in Chemo-ville creates a bit of anxiety and expected fears and loneliness.  It’s just part of the overall scope of symptoms of chemo, and cancer.  I believe in the healing powers of pets and the perfect little angel fell into my life. 

My Sweet Marilyn, she is six years old and comes from a foster  family.  Originally found wandering in Seattle, and taken to a shelter.  I am blessed to have my little friend.
 I apologize, I have been trying like crazy to upload several very cute videos of her, but we will have to wait. On my Facebook page there is an adorable play session, and I'd encourage you to check it out.  

I hope that you all had a beautiful Easter Holiday. 

Monday morning I go to the hospital for my second cup of carbodrip, with cream of course.  I have been keeping busy today, reflecting on the message of Easter and feeling warmth knowing that we are in a time of rebirth and renewal.  We have new opportunities to clean up our messes and start fresh.  Isn’t that just amazing?

I was fortunate to go to Easter Vigil on Saturday night.  All I can say is that I really needed to go.  It felt so good and I am so grateful to be here.

I wanted to share with you some of the reasons why people support and have joined the cause 
“Turn Facebook Teal to Heal in September”.  I spent a lot of time on Saturday catching up with the members and sending out a few notes.   


I am a cancer survivor myself and would like to see something done with this silent has taken so many lives and caused so much pain. I want to do anything in my power to change this and would like the love and support of family and friends to share in the support

I lost my grandmother to ovarian cancer, and would like to make others aware of this terrible disease.

I lost my Aunt to ovarian cancer & I pray every day for a cure so one day no one will ever have to feel the pain of losing the ones they love in such an awful way!!

I am an Ovarian Cancer Survivor. Stage 1a. I am one of the lucky ones. We need to get the word out. Early Detection is key.ave lost way too many friends from the hideous illness called Cancer !!

I lost my mom to ovarian cancer

I am in my 3rd year of remission, always a fighter, I now fight for me and all those still fighting, and for our angels who got wings we will always love and remember the fight you all fought.

I am facing a terminal illness, it is time to act. Get with a program and support it however, you can.
-Carol Lyn Wnuk

Ovarian Cancer took my sister 02/02/2010.

I have seen the human body and spirit ravished by this evasive disease. The cure for Ovarian cancer may open the door to the cure for other dream killing disease within the body. 
Carol Wnuk

I want to raise awareness to help more victims become 
survivors like my sister.

I lost my Mom to Ovarian Cancer and I want to find I way 
to stop it from taking any more amazing women

In support of my dear friend Jessica xo

I am an ovarian cancer survivor of 3 yrs. I want to spread the awareness so no other woman has to suffer from this hideous disease! Lets put teal on the map so everyone knows what this color means without having to ask!!

I am a 25 yr survivor and blessed with a Beautiful 21 yr old daughter.Just wanted to let women 
know you can beat this disease.

CANCER the most hurtful word ever spoken. It takes our loved ones way to soon and it is evil. Lets fight it together and try to beat it the best we can. I love and miss those whom I have already lost due to cancer and DON'T want to lose anymore. 
I shall stand tall!!!!

Because no young girl or woman should go through what I or any other woman has gone through from Ovarian Cancer. 

My Mother passed away from Ovarian Cancer at the age of 55..that was almost 1 yr ago. I miss her so much.
I hope to help prevent anyone else from suffering.

These are just some of their heartfelt words......

I'll be in hospital til Tuesday, so long as all goes well.  It will be the same 
de-sensitization treatment as last time.  10 hours of chemo, yay.

 For some reason my CA125 is now 33, but I was told that was a reaction to chemo.  Oh well, that marker is not too reliable for me anyway.

I love my family, friends and followers.  Thank you God for all your gifts and grace.

Love Denise

Monday, April 02, 2012

Prayers for Heidi

My friends Heidi and Joe Hendricks need your prayers, Heidi's tumor markers have doubled.

They both battle cancer.  The link above may not reflect the latest update, as we just found out.  She has been battling breast cancer for eight years and she is still so strong.  They are a very active couple and have hiked what seems to be every mountain in Washington.  But her cancer has spread and her newest chemo has not worked.  Joe had a recurrence and has an unexpected surgery in the morning.

Please pray for them or send  your healing thoughts......I know some people don't believe in prayer, but none of us know the truth about God.  I never argue with people about God, because it is our individual journey to try to understand what is beyond what we see.

I believe prayers and healing thoughts work.  When my mom was in the hospital, I sent out a prayer request.  Within an hour she was more aware, and coming out of her fog.  Today she has so so much more life in her, and I can feel more health and energy when I am around her.  Maybe it was coincidence, but I just don't believe that.  I love my mom so deeply.

I love you for caring and for reading and for listening.

Heidi and Joe give nothing but love, and I love them.