Obama's ACA Opens Door For Significant Cancer Research Options

More Cancer Research Available Because of The Affordable Care Act

Insurers required to pay for routine care costs in clinical trials

mar
2013

By Elsie Puig for TCAJOB

"Patients from all over the world have gone to the Seattle Cancer Care Alliance to participate in clinical trials, especially those for bone marrow and stem cell transplants.

“The benefits of choosing to participate in a clinical trial can be significant,” said Forbes."

Quote from article in http://www.tricitiesbusinessnews.com/

I want to address the rumors being spread about how cancer patients will be left with fewer coverage options in 2014.  How do people say these things without actual evidence?  They say it because they don't like the healthcare bill and don't want all people to have access to quality care.

The above referenced article stated clearly  that because of the historic passing of the Affordable Care Act, not only will more patients have access to newly discovered treatments, research facilities will have a broader base of participants, which dramatically improves the quality and timeliness of much needed studies.

Insurance companies cannot deny coverage to patients who participate in a clinical trial.

I have opened up a response below from someone who claims that the number of options for quality cancer coverage is decreasing due to the Affordable Care Act.

Well, why would that be?  Hmmmm.  Maybe some insurance companies don't want to cover cancer, so they drop their contract with a facility that treats cancer patients.

So the insurance company is the entity responsible there I say.  Also, somewhere along the line big pharma really needs to lower their charges for medications, across the board.  It is ridiculous all around.

This is a really unique time for people with pre-existing conditions.  We will not let this go, ever, millions of us need the Affordable Care Act, even if it is not perfect.  The ACA has implemented within it Q&A, so it can adapt and change with demand.

I have already contacted the American Cancer Society and am looking forward to talking with someone on Monday.  Please also contact them if you have some concerns about these rumors.  http://www.cancer.org/

The woman that I spoke from the American Cancer Society was glad to help me.  

As a Nation, we are for the very first time in history on the cusp of adding another layer of real equality to services that treat our lives.

It will take time for some of the problems to work themselves out, that is truth.  The right thing to do is to give everyone a chance for quality health care, not just the few with good jobs who are already healthy.  

Imagining a nation with less illness, more health, better education and improved strength is exciting to me.  Gee, maybe we can reduce and better treat drug addiction and mental illness.  Wow, more cancer screenings to catch cancer earlier.  More cardiac screenings to avert heart attacks.  Fewer people with diabetes.  

The Affordable Care Act is not just about cancer.  It is about everyone's right to have healthcare.  Healthcare that they can afford.  Healthcare that is ongoing, not just in the emergency room.  

Peace and Blessings,

Denise

The Affordable Care Act: A Few Resources

I have seen a lot of mis-information in the news about fears for cancer patients and the Affordable Care Act.  Tea Party Republicans are holding the government hostage because they don't want people to be empowered with health and vitality, in my opinion.  It is historic and tragic.  I have always believed healthcare is a right.

I remember when I graduated from college and was shocked to learn that my health insurance was tied to my employer.  I have had rheumatoid arthritis since age 15.  When I lost that well paid career due to RA years later, I had no health insurance. That lasted for about 10 years.  Thank God I had good insurance to help pay for the optimal debulking surgery that diagnosed my cancer.  Had I not had insurance, I would have died.

We needed The Affordable Care Act years ago and it's time has come.  

The document is over 900 pages long.  It is understandable that people and agencies are overwhelmed.  Some of my ovarian sisters are scared about some of the outcome based strategies written into the new law that are designed to improve quality of care.  I think some doctors are also not sure what this will mean for some patients.  Some bad employers have  prematurely dropped spousal coverage as of October and these poor people are not able to be covered until January of 2014.

I myself need to shop for a new plan because my insurance decided to cut off my provider.  I want my doctor, I want my treatment team and facility so I will shop till I drop to keep them.

The big picture though is that millions of good people will have the ability to see a doctor.  The benefits in preventative care and screenings have been ramped up.  There will even be a program that will try home based delivery of care by physicians. Mostly, people with pre- existing conditions no longer need to live in fear.  

The ACA will take time to be perfected, but this is an historic opportunity for millions of people to have access to much needed screenings and care.

Here are a few resources that will help cancer patients have tools to better select insurance and also have access to treatment protocols that have been created.  

http://www.nccn.org/patients/about/resources/default.aspx

http://www.livestrong.org/

Love Denise

BRCA-and-Ovarian-Cancer--Risk--Prevention--Detection--and-Treatment-.html?soid=1102150261756&aid=Atrz4H0uRz0

http://myemail.constantcontact.com/Monday--Free-Educational-Webinar--BRCA-and-Ovarian-Cancer--Risk--Prevention--Detection--and-Treatment-.html?soid=1102150261756&aid=Atrz4H0uRz0

With National Ovarian Cancer And Gynecological Cancer Awareness month wrapping up and Breast Cancer Awareness Month beginning, it is a perfect time to learn more about genetic mutations.

I have a BRCA1 mutation, that was detected after my ovarian cancer debulking surgery.  As par for my course, the California insurance company denied the test.

The test was approved in Seattle.  Seattle is where my best care has ever been.

This testing is critical.

My relatives are at a higher risk of breast and ovarian cancer .  If I had  not have been tested, we would not have known our options in these cases.   My relatives have choices that could avert cancer, if possible.

Earlier in the year I spoke out about how proud I was of Angelina Jolie, for being pro-active with respect to her bilateral prophylactic mastectomy.

If I would have known about this testing before 2009, I would have had my ovaries removed for certain, and probably preventative breast removal surgery as well.

Currently I am in a monitoring program, one breast MRI and one mammogram per year coupled with regular physical exams.

Because I am on Avastin I cannot have a major surgery.  If you are in chemo you can't have  prophylactic bilateral mastectomy.   So we watch, and so far I am good. Thank God!

On a personal note, I am always really tired and need 12 hours or more per night to sleep.  I am in more pain, but my markers seem to be getting better.  I will stay on Avastin as long as God and my wonderful gynonc allow.

Praying for a screening test for ovarian cancer.....and continued research for cures.  I am also praying for more daily living resources to help us pay bills, rent, co-pays and laws that allow for access to resources that otherwise require a terminal status.  It is weird to have a cancer that is likely to kill you but not be able to access much needed resources that can ease just a little of the daily burden.

Unless you were wealthy before cancer, this is what happens after ovarian cancer.  It is costly in so many ways and really, who prepares for cancer?

If I had breast cancer I would have access to more resources.

That is just wrong on so many levels!

I have to say that I am so proud of the SCCA for having a patient and family fund program, because they have helped me here and there. Cancer Lifeline in Seattle has also been an invaluable resource for me



Peace and Love,
Denise

The Wheel Turns Teal To Heal In Seattle September 18, 2013

My day with my sweet sister Mandy was incredible.  We rode the Seattle Great Wheel together.  We giggled and talked, we just had fun.  It was one of the best days ever.

On September 18, 2013 The Seattle Great Wheel lit the lights of this giant Ferris wheel TEAL, to honor those who are in support of raising awareness for ovarian cancer.

It was a time for all of us to reflect on our health and our loved ones.  It was a time for advocates to share and educate.  It was a time for doctors to reflect.

Mostly it was a time to join together for a moment, and remember those whom we have lost. It was a special moment for those who remain, to be grateful.

I am pretty tired, but it was worth every second.

Thank you Seattle Great Wheel, Seattle Cancer Care Alliance (my second home) and KOMO 4 news for actively helping me share this symbol of hope.  

Thank you Mandy!

Thank you Barb!

Thank you Annie Abbott!

I did not do this alone.

When I asked about this and got a resounding "yes" I was not aware that other people were working on the same thing.  It is easy to see why this great Ferris Wheel is so special, look what it can do.

Some women went to Pier 57 in TEAL with their families and wrote that they had a wonderful time, They said that it was brilliantly lit.  Many others wanted to be here to see this in person.  I hope this little video joins us all together.

This belongs to all of us.  This is for you.

Peace, Love and Blessings

Denise

UPDATE: Seattle Great Wheel to be TEAL All Day Sept 18, 2013

 http://seattlegreatwheel.com/

I want to thank the lovely Annie Abbott for showing support in honor of

Ovarian Cancer Awareness Month.

She just told me that the Seattle Great Wheel will be lit TEAL all day!

The start time is 10am and they will turn off at 11pm.

She welcomes all and anyone who wants to gather on Pier 57 and around the area to share in this symbolic event and to educate others.

There are no formal events on the pier directly, but I do know individuals who are attending.

I am asking for us to take the last 5 minutes of this lighting ceremony to be in silence in memory of our lost sisters, those who have paved the way for our researchers and physicians to learn and grow.  Our lost sisters are the ones who really give us strength, they were strong enough to move through the battle.

When I am down, I listen to "Strong Like You" written and composed by Kathie Lee Gifford and David Friedman.  This was sung to my mom, and every time I listen I also think of our sisters who are struggling or who have struggled.

Chandra Lee Schwartz sings it beautifully and you can see the link on my site off to the right.

"On God's Table there are no crumbs" .....

Please let me know if you will be there!

September 18, 2013

10am to 11pm

Love,
Denise Archuleta
Servivorgirl

September 18, 2013 Seattle Great Wheel To Light The Sky Teal

Seattle Great Wheel

Have you ever seen the Seattle Great Wheel? It is quite a spectacular site. A giant Ferris wheel firmly rests on the boardwalk of Pier 57, overlooking the beautiful waters of Puget Sound.  From their website at
http://seattlegreatwheel.com/index

• The Seattle Great Wheel is the largest observation wheel on the west coast, standing 175 feet tall.

• The wheel has 42 fully-enclosed gondolas. Each gondola seats up to eight people, meaning the wheel can hold over 300 passengers at any given time.

Over the past few months and even last year I imagined what this great Ferris wheel would look like in Teal. When I asked them to help raise the volume of the whispers of ovarian cancer, without hesitation, came a resounding "yes".

I am but a person to whom they responded.

The Ferris Wheel will brightly light the sky TEAL 

 September 18, 2013 

7 pm to 10 pm.

As I will be watching the brilliance of teal in the sky, I will remember all of our fallen angels. I will remember the supportive words, encouragement and love from my family and friends.  I will feel blessed to have had such excellent surgery and chemotherapy. I will want for nothing less for every other woman with this deadly disease.

We will raise our voices and help others to learn more about what ovarian cancer is, does and costs in terms of quality of life. We will also share the blessings that come from living through, suffering through and treating through the many facets of this complex and shifty disease.

Embrace this moment and save the date. Tell your friends. Go for a ride if you are in Seattle that day.
...............................

An Open Letter Of Gratitude

Dear Annie,

I want to share my utmost and sincerest gratitude to you and the people with The Seattle Great Wheel for supporting Ovarian Cancer Awareness Month. You have given rise to our voices, elevated the calls and cast a beautiful light in the midst of our struggles. Many people and organizations will benefit from this beautiful act of support and kindness.

Warm regards,
Denise Archuleta
A patient with ovarian cancer
...............................................................................

Hi Denise,

The wheel will be lit with Teal on Wed September 18th in awareness for ovarian cancer.

Please feel free to let anyone know.

The wheel will be lit from 7-10pm.



Thanks,



Annie Abbott

Communications Director Pier 57
.....................................................................................
For those that may need this page to promote this important symbolic event, I have also included a link to our President's Proclamation for National Ovarian Cancer Awareness Month, this September 2013.

Official Presidential Proclamation: September 2013 is National Ovarian Cancer Awareness Month

Peace, Love and Health,
Denise

Rare Cancer, Rare Friends

We lost a unique and lively woman this summer to Ovarian cancer. Her name was Jan. She said that she acquired ovarian cancer as a result of having Lynch Syndrome (see below).

She spent her life flying around the world working for Pan Am and then for Washington State. When her joyous life came to an unexpected end, she was loving her work at the helm of a ferry. Each day she would embrace the beauty of nature. I met her several years ago, along with several other women at an ovarian cancer seminar in Seattle.

Jan was strong, compassionate, fiesty, outspoken, deeply caring and full with inspiration. This whole time she was battling cancers. People amaze me.

Her sudden death, from an embolism, tanked me emotionally. I had the priviledge to hear from her the day she died, and her last words to me were to ask me to pray for another now departed sister, Judy.

I miss them, Jan and Judy. I miss many women whom I have come to know from having ovarian cancer. It is a blessing to have heard their cries and their joys.

As we embark on this month's mission to increase awareness of the symptoms of ovarian cancer and provide ways to help women receive good care, let us be mindful that real lives, real women, real families are devastated every day from their loss due to this tricky killer.

One of the best things you can do is to ask your doctor if they have materials in their office that educate women about ovarian cancer and other gynecological cancers.

Off to the right is an icon that says "Be Brave Ask Questions" This link will provide materials for individuals and professionals interested in patient education.

In honor of the dear friends we lost this year and to cheer on those who continue to survive with ovarian cancer, I will do all I can to prevent one more late stage ovarian cancer diagnosis.



Love,
Denise



Reviewed May 2013

What is Lynch syndrome?

Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps. In individuals with this disorder, colon polyps occur earlier but not in greater numbers than they do in the general population.

How common is Lynch syndrome?

In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year. Approximately 3 to 5 percent of these cancers are caused by Lynch syndrome.

What genes are related to Lynch syndrome?

Variations in the MLH1, MSH2, MSH6, PMS2, or EPCAM gene increase the risk of developing Lynch syndrome.
The MLH1, MSH2, MSH6, and PMS2 genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer.

Mutations in the EPCAM gene also lead to impaired DNA repair, although the gene is not itself involved in this process. The EPCAM gene lies next to the MSH2 gene on chromosome 2; certain EPCAM gene mutations cause the MSH2 gene to be turned off (inactivated), interrupting DNA repair and leading to accumulated DNA mistakes.
Although mutations in these genes predispose individuals to cancer, not all people who carry these mutations develop cancerous tumors.

Read more about the EPCAM, MLH1, MSH2, MSH6, and PMS2 genes.

Presidential Proclamation September 2013 Ovarian Cancer Awareness Month

The White House
Office of the Press Secretary

For Immediate Release August 30, 2013
Presidential Proclamation -- National Ovarian Cancer Awareness Month, 2013

NATIONAL OVARIAN CANCER AWARENESS MONTH, 2013

- - - - - - -

BY THE PRESIDENT OF THE UNITED STATES OF AMERICA

A PROCLAMATION

Each September, America calls attention to a deadly disease that affects thousands of women across our country. This year, over 22,000 women will develop ovarian cancer, and more than half that number of women will die of this disease. During National Ovarian Cancer Awareness Month, we lend our support to everyone touched by this disease, we remember those we have lost, and we strengthen our resolve to better prevent, detect, treat, and ultimately defeat ovarian cancer.

Because ovarian cancer often goes undetected until advanced stages, increasing awareness of risk factors is critical to fighting this disease. Chances of developing ovarian cancer are greater in women who are middle-aged or older, women with a family history of breast or ovarian cancer, and those who have had certain types of cancer in the past. I encourage all women, especially those at increased risk, to talk to their doctors. For more information, visit www.Cancer.gov.

My Administration is investing in research to improve our understanding of ovarian cancer and develop better methods for diagnosis and treatment. As we continue to implement the Affordable Care Act, women with ovarian cancer will receive increased access to health care options, protections, and benefits. Thanks to this law, insurance companies can no longer set lifetime dollar limits on coverage or cancel coverage because of errors on paperwork. By 2014, the health care law will ban insurers from setting restrictive annual caps on benefits and from charging women higher rates simply because of their gender. Additionally, insurance companies will be prohibited from denying coverage or charging higher premiums to patients with pre-existing conditions, including ovarian cancer.

This month, we extend a hand to all women battling ovarian cancer. We pledge our support to them, to their families, and to the goal of defeating this disease.

NOW, THEREFORE, I, BARACK OBAMA, President of the United States of America, by virtue of the authority vested in me by the Constitution and the laws of the United States, do hereby proclaim September 2013 as National Ovarian Cancer Awareness Month. I call upon citizens, government agencies, organizations, health care providers, and research institutions to raise ovarian cancer awareness and continue helping Americans live longer, healthier lives. I also urge women across our country to talk to their health care providers and learn more about this disease.

IN WITNESS WHEREOF, I have hereunto set my hand this thirtieth day of August, in the year of our Lord two thousand thirteen, and of the Independence of the United States of America the two hundred and thirty-eighth.

BARACK OBAMA

Four Year Cancerversary

As I walked out onto my small patio yesterday to film this clip of my healing garden I took a deep breath and thanked God for my life.

This day today, July 29, 2013, is the four year anniversary of my diagnosis of ovarian cancer. I remember how frightened I was, in pre-op, my mom and Aunt Deb rotating time with me to calm my nerves as the nurses prepared my body for what would be the most defining procedure of my life.

I remember how special it was that my Aunt Deb and my mom had flown out from California and Seattle to Sacramento to stay with me during and after for the surgery. I remember tears flowing when I saw them at the hotel by the hospital the night before. I looked pregnant and was in so much pain. By that point I could not go more than an hour before needing to lay down due to the pain. I was falling from weakness and no pain pills could relieve my misery.

We arrived bright and early for surgery that day and my imagination was running wild. I had no idea what the results of my surgery would really be and I was scared to death. Small things no longer mattered. I remember thinking that I had wasted so much of my life doing either nothing or the wrong things. I promised God that if I lived I would do good things with my time, help more people and be there for my family.

More tears were flowing when my beautiful sister arrived the day after surgery. I couldn't believe it. I hadn't seen her in several years and of course she arrived carrying a big smile, compassion and love.

Tears would come and go as my Aunt Deb and sister swapped time with me over a period of four weeks afterwards. That time with Mandy and my Aunt will never be forgotten. We got to talk, watch movies, scramble to get medical paperwork transferred to the SCCA, daily visits to the oncologist, and managing the transition to Seattle. Meanwhile mom was in Seattle working hard to rearrange her home so that I could live with her temporarily during and after chemotherapy. None of us knew how this would change my life or their lives.

Optimal debulking surgery is highly invasive, called "The mother of all surgeries". I never want a major surgery like that again. Don't believe them when they say that you should be back to somewhat normal in about 6 months, it's not true.

Good friends like Barb and Craig and Randy and Mike and Pier, along with friends from church, helped me cope and pack for my future life in Seattle. They took me to doctor appointments, transported family back and forth to the airport, and offered much needed hope and cheer.

That time between surgery in California and meeting my new gynonc in Seattle was also filled with rage. My Aunt, mom and sister were there to hear my story over and over and over and over. How could I have advanced aggressive ovarian cancer and not one doctor had a clue? How was that possible? It is a question that sadly goes unanswered for thousands of other ovarians each year. I was just so angry. I need to say though that my surgeon came about not as a result of my OB/GYN, but from having a really smart hematologist. He took over the reigns and referred me to the correct gynecological oncologist, and that is why I had a head start during this time in my life.

When my brother Arnie arrived to drive my car to Seattle, I almost fell over from crying. Barb had helped me pack the car. I wanted to soak up as much time that night as I could with him, catching up on my niece and nephew and listening to his music library. My sister flew with me to Seattle from Sacramento. Craig drove what remained of my few possessions to Seattle from Sacramento about a week after I arrived in the Emerald City. The support I received was beyond anything I could have imagined.

I started chemotherapy at the Seattle Cancer Care Alliance with a new medical team, the team I still have today. Thank you God for bringing me here. I got two years of a break and then went into a recurrence about a year and half ago. I am still receiving treatments for my cancer, and start Avastin infusions tomorrow (Edit: This is chemobrain-my Avastin was approved to be done August 6th). The insurance problem has not affected my care. I was able to delay this for a few weeks because mom fell a few weeks ago and is still recovering from her injuries.

The past four years were not what was expected, both in terms of good and bad. I had to stay with mom much longer than was anticipated. I cannot work more than part time but do have a small apartment for now.

We have a lot going on here in terms of helping with mom and I for medical appointments. Mom has been through the ringer yet she marches forward. I love her with all my heart and soul.

To be frank, we are consumed with medical appointments. It is just too much, a job. My sister has sacrificed a lot because of this journey, I love her.

Life is not supposed to be a job. I am only interested in "quality of life" matters now. For mom, myself, siblings and other family.

We have had some great times over the past four years. Mom was on the "The Today Show", which is amazing. Unexpected Christmas days, birthdays, mornings watching the Macy's Thanksgiving Parade. Going to Karate demos to see my nieces shine. Seeing the horses run at Emerald Downs with the whole lot of us was unforgettable. Playing Guitar Hero with my niece and nephew in Arvada, watching movies. Laughing with mom during many a morning coffee or lunch at Ray's Cafe. Watching sunsets in San Pedro and having a latte with old friends at Starbucks in Arvada. Watching my brother play hockey and scoring the winning goal. A family gathering at the Olive Garden on a snowy day in March. The memories will never die.

I have met wonderful friends, ovarian sisters, who I deeply treasure. Sadly, many are now in heaven. Each day I think of them. I see their faces on Facebook. I remember them from their blogs. I honor Jayne, Patti, Jan W, Christine, Jan G, Judy, Dodie, Jo, Sarah, Hudson and the many other ovarians who are no longer here to share their joy. Other beautiful friends lost to breast cancer, Heidi and Daria. May they rest in peace with the Lord.

My father reminds me that God loves me and to be strong. Marilyn, my sweet rescue cat has rescued me. The joy she brings is irreplaceable.

Here is the truth though, and this must be told. Cancer changes things, forever. Chemotherapy, surgery and the side effects contribute to a new "you". I have become richer in spirit, more sensitive, more anxious, more fatigued, more empathetic, less selfish, more giving and more interested in family than ever in my life. If someone you love has cancer, please understand these things, it will go a long way for each of you. Maybe your loved one will recover fully and have no lingering side effects, praise God. But if they will live with chronic cancer, your life can be richer in spite of the suffering. Accept them for who they are now.

I am in constant pain, that will never change. I seem to constantly misunderstand other people, not sure that will change either. I have a new panic disorder, which has made things really interesting for myself and those around me, not so good. On the other hand I am more dedicated to God than ever before, and more interested in nature and animal life than ever before. I want to be a person who is known for doing more good than bad and pray for God's ultimate forgiveness. I pray every day that those I love live a happy life, rich with love, health and security.

I get very heartbroken when the lack of money limits my ability to do the things that make other people or myself happy. I remember saying that the one thing I did not want if I survived was a small life that revolved around working to pay bills to work to pay bills. On some level that is what I have, but I am alive to have it. In my heart I know I can contribute more, do more, offer more...........

I do want to write a book. I want to have a family reunion in a beautiful place where everyone can be for a week or two. I want to continue to raise awareness of ovarian cancer and most of all serve God by living my life as He intends. I am here for a reason. So is mom, and everyone who is reading this post. All we can ask of ourselves at the end of the day is "did I do the best I could?" If we have done that, then we are contributing in a meaningful way, what more can be asked of us?

I get absolutely thrilled watching the bees hover around the blooms. I want to see more ocean waves and Christmas trees. I want to live a life with more joy than pain. I am on a continuous path towards peace.

May there be a cure for cancer and a reliable screening test for ovarian cancer. I thank Dr. Gray for she has taken such great care with my chemotherapy. I love my family and friends. I am also very grateful to the home ministers from my Church who visit me when I am too fatigued or sick to attend church. Thank you dear Lord for all of my blessings.

May God Bless you today and always.

Love,
Denise

Monsters and soul mates

I had a long dream last night, did not wake until 7pm today. In this dream I found myself to be a different woman. I was visiting people for a celebration of some sorts. The house was a mansion, three stories tall and the top level was all glass. The main level, top level had a grand room with a never ending white leather sofa that was in the shape of a semi-circle. It consumed most of the room. The flooring was of wood and the walls had modern colorful paintings, and on the center wall was a huge fireplace.

I have no idea why I was there because in the dream I knew nobody. I remember looking at my face in the mirror, and amongst a sea of beautiful people, I was disfigured. I had double eyebrows, one underneath the other.

This was most unfortunate for me as I met who I believed to be my future husband there. Every other woman was a model, and there I was, short, not so pretty, and awkward.

I grabbed tweezers to fix my face, but there was no point. In the dream I remember feeling that I was not supposed to have this face.

My guy was actually wanting to talk to me, but my insecurity and appearance created to big of a barrier, yet I knew we were soul-mates.

I went down to the first floor and the house turned into a dark blue tri-level generic house, in the suburbs. The grass was deep green, on a corner. The front of the house faced east, and in my dream the sun was just about to set, very beautiful.

I went out into the back, saw an animal that was like a large rat run off, and it turned into a ghost like figure. There was a group of these things. They were 20 feet tall, a large ghost head and octopus like legs, but only three legs. Every once in awhile, they would peer into a window and try to attack! These monsters were stark white.

i asked other people about them and they were known to be invasive creatures that needed to be destroyed. They were invading and there was a war on to eliminate them. Because they could not open doors or break glass, as long as you kept everything secured, they would hover outside.

So then I sent my sons to a neighbor's house to stay the night, but as I followed them outside to meet their friends, I realized that these were not my sons but the sons of the man whom I'd met at the mansion. I was responsible for them and he would be coming home soon.

Then in my dream the mom of my soulmate drove me to a campus to finish an exam. The roads were actually stacked on top of each other to get onto this campus, and people would get trapped if they took the wrong entrance. That is exactly what had happened. It was like a large fun house, everything was distorted. I had to finish my exam, so somehow I made it but had to get back to the blue tri-level house in my own.

I was covered in dirt when I arrived, but the house was no longer the tri-level house, it was the beautiful mansion.

Grandpa asked me to stay to play cards. He was the grandfather of the two boys who I thought were my sons. So I agreed. I started to freshen up and looked in the mirror, my face was normal again. My guy was walking up the hall to see me and he said that it was always me. He said he loved me. Then he walked away. I could not stop crying.

As his mother drove me away, he watched from his glass tower under the night sky. I could see a movie being projected on the wall and a room full of beautiful models, and I was still crying.

That was it. Then I started to wake up and it was 7pm.

Seems like such a juvenile dream, but I can see the images from each moment of the dream as I am am typing.

I see his handsome face and weirdly I feel like maybe I missed a real love in my life. He is out there somewhere.

The love seemed so real.

the end.....

NCCN Guideline Book For Patients, Ovarian Cancer

publication: NCCN Guidelines for Patients® | Ovarian Cancer

Thank you Sandy from Inspire.

This resource is an invaluable guide to help anyone navigate maze of ovarian cancer.

I am getting ready to begin a new chemotherapy next week.  To be honest, I am a little nervous about starting Avastin, but I have faith in God and my team.  I am going to do all that I can to prepare for side effects and stay positive.

Love,
Denise

Healing By Creating, What Dahlias and Bees Can Bring

Creating is essential to living, and we know this as truth. It is amazing how effective a breath of fresh air can be to lift our spirits, just enough, to move forward towards a better moment in time.

My yard comes in the form of a small apartment patio and I am so blessed to have  access to this area without worry of drowning a tenant underneath during watering times. The glass door provides the perfect view. This is not a lot of work, which is perfect for me right now as I am so tired all the time.

This little patio garden was started as a result of one of my mom's neighbors kindly offering her and I some dahlia tubers or bulbs. She was so enthusiastic and literally glowing when describing her experiences with the beautiful flowers, there was no way to refuse. Last summer she had given my mom several bundles of gorgeous blooms, and mom was thrilled.

Mom's neighbor said that her mom has a significant man in her life who is a dahlia expert and that he had over 180 varieties himself. I was fascinated. The fun with dahlias is that you get a spectacular surprise with each tuber. So I planted some for me in little pots and some for mom in the front of her house. Yay.

Now I cannot profess to have a green thumb, actually ever. I am gambling a bit here with this project. Since I have never owned a home, I have never really involved myself in gardening, but the time is now.

It has been a refreshing and cleansing process to begin the growth of a few choice flowers and vegetables. It has not cost too much money and the rewards are yet to be measured. I have no doubts that this project will help me spiritually, emotionally and physically.  Health in spirit promotes health in body.

Back when I was living with my mom, during my first round with ovarian cancer, I loved to hand water her lawn. Ahh the sweet perfume of grass and fresh water. The sound of the droplets spraying onto the lawn, birds chirping and people off in the distance doing whatever they are doing is so relaxing.  Love it. I am not a fan of pulling weeds, but otherwise, anything that helps to keep things looking pretty, I want to do.

Mom has the most fragrant lavender too, and watching the bees as they circle in and out of the flowers during their dance makes me feel really happy. When I walk up to mom's front porch I always run my hand over the lavender and inhale the sweet smell on my palms.

I have planted chinese cabbage, a tomato plant, bagonias, fuschia, impatiens, hydrangaa and dahlias. I also have smaller pots of rosemary, lavender, dill and lemon grass.

Just tonight I pulled a few sprigs of lemon grass and dill to add to my cod, for a healthy and delicious dinner. Yum.

Here is a link to a video that I made of the bees with the lavender:

I hope that this post has lifted you up and that you enjoy the days to come.  I have a new chemo treatment plan coming in the next week or so.  Another new adventure in cancerland.

Creating increases energy, it's just part of nature.  I feel so blessed to be able to create on any scale, but to have my little patio garden, wow, what a joy.

Love you all and God Bless.

Denise

Birthing Days for moms and daughters

Today was a bittersweet day for me.

The sweet: Mom and I spent the day together, it was my birthday. It has been a great birthday, just one of those "feel good" days that don't come along every day. We had a nice little lunch at a place called Ray's
Cafe, looking out into into the Puget Sound. It's one of my favorite places. Mom and I have been there many times, for lunch or a coffee, or out for dinner with all the family. The view is just incredible and we were not disappointed.



We watched sailing boats, fishing boats and paddle boats go by. The air was fresh, the sky was blue, and we had all the time we needed to chat and take a few photos. During lunch it was fun to ask her again how much of pain I was when she was giving birth to me. It truly is a day for moms and daughters, a day of birth. How sweet of my mom to do that with me today, yay.

After lunch we headed to her house and talked some more. We talked about family and she got out her mom's old cookbook from 1946. "The Searchlight Recipe Book" has been well used. Mom showed me pages where she had scribbled as a little kid. Certain recipes are checked off, slightly modified or circled. How fun it was to peruse through the now delicate and yellowed pages and to learn more about how grandma Fossett used to cook.

When we got to the cake section, you could feel tiny grains of flour still on the page's fragile surface. Grandma used to bake lots of Pineapple Upside Down cake. I inquired about one recipe for "eggless cake", and mom said that during WWII, eggs were shipped off to the troops, so having them at home was rare. Grandma also made the most amazing pot roast, and in that book we found her recipe. Wow.

This cookbook was originally published in 1931, and contains many short and simple recipes, due to rationing at the time of the Great Depression. There is an ingredient, actually several ingredients of which I have no clue as to what they are. "Junket" is one of them. I guess it is a prepackaged milk type product with enzymes that cause it to curdle, for puddings. It will be fun to gently read these pages from the past, maybe I will try a few recipes for fun.

Mom decided to go ahead and give me her mom's cookbook. It made me tear up a little, how sweet and precious. I love it and will treasure it forever.

I had mentioned previously to her that I like collecting old cookbooks. This is a new thing for me. The idea of an old cookbook, passed down the family line, read over and over, spilled on, edited and soaked with butter stains seems like perfection to me.

I plan to preserve Grandma's cookbook carefully and keep it close to my heart.

Thank you Mom!

The bitter: My mom's Aunt Bert, her rock, passed away last week and her funeral services were today. Most of the family was in Atwood, Kansas today, holding close to them the broken hearts of children with their spouses, siblings, grandchildren, great-grandchildren, cousins, nieces, nephews, dear friends and everyone who knew her.

My mom and Aunt Bert are alike when they giggled and they are both strong willed. Not all of us could make it to Kansas, but many many did. She was such a giving and loving person, cared about everyone in detail, kept up with their lives, and always always had a glass of cheer to share. She just loved to laugh. My mom loved her so much and she admired her more than ever. This is a big loss for the family.

Her children, their spouses, grandchildren are missing her so much and they are in my prayers.

When I was a young girl I was able to spend a few weeks in the summer at their family dairy farm. One day I will share more details, but there were so many experiences you can only have on a farm. Things like how not to play with electric fences, what do you do when you get bucked off of a horse, how do you really milk a cow?

Aunt Bert and her family worked hard, real HARD, milking cows and running the farm. The food was in abundance and so so good. I close my eyes now and I hear the frogs and crickets singing in the night. I smell the hay, I hear the gentle clopping of a horse's hoof on the ground. I hear the wind wisp through the fields of alfalfa. I smell bacon in the morning and hear birds chirping in the sky. I feel the fresh cold in the dairy barn, and remember the rich taste of pure fresh cold milk.

I will never forget that time, getting to know my cousins, and spending time with Aunt Bert and Uncle Earl, and scaring the begeebers out of cousin James by getting lost in the pasture.

Aunt Bert, may you rest in Peace with God and may He carry the broken hearts of those who love you while we grieve for your loss.

With that I will wrap up my thoughts and hope that you can take a moment to reflect on an experience that took your breath away.

Thank you Mom for one of the most beautiful days of my life. I love you!

Denise

My Insurance Ending Contract With My Provider!

I received word at the beginning of June from my cancer center that the insurance provider, a Medicare Advantage contract provider, was ending the contract with my cancer center. This is concerning for me and any patient at the cancer center. Quite an overwhelming situation indeed.

The contract ends July 1, 2013.

After I contacted my insurance company they said that the medicare advantage agreement was the only contract effected and that other contracts with the cancer center remain intact.They said they are happy to send me a booklet of other providers, and although I can retain my doctor, I am confused and overwhelmed by the lack of continuity of care, not having access to specialty trained nurses and techs to access my power port, and how will I navigate my care if my care cannot be provided from the location from which my trusted gynonc-oncologist operates?

I may be able to continue benefiting from their care as an out of network patient through the end of the year. I may need a new treatment team when open enrollment begins again at the end of 2013, because the provider will no longer be available and I have no financial means to access my provider as an out of network patient.

On my last visit I was told that I was fortunate to have lived this long, longer than was expected. My immune system is very compromised, I cannot tolerate many of the newer treatments like PARP inhibiters. I have been on chemo for 16 or 17 months now. Like many cancer patients, I have a complicated mix of challenges. Now is not a good time to be denied access to my cancer facility.

I am also extremely concerned for those patients who do not have the means to pay any extra out of pocket expenses now and are now forced to make quick decisions and changes with minimal notice. What about those who have been paying all year and just now are needing treatment, specialty services and access to the cancer center? Mind you this is the medicare contract, so seniors and people who have disabilities are being effected.

How is this ethical? How is this legal?

I called my local Congressman's office, Jim McDermott, and spoke with a concerned representative who was extremely helpful, provided me the correct actions to take, and highly supported my idea to create legislation that disallows an insurance company to terminate a contract with a medical provider after the open enrollment begins.

I want it to be illegal to cut patients off mid-year, especially complicated scenarios involving cancer. It is exhaustive to research and find an oncologist or oncology surgeon whom you trust with your life, is reputable and will treat you in a manner that meets your individual needs.

This particular situation targets medicare patients, which I find criminal.

Per Mr. David Loud, from Congressman McDermott's Office, here is what I can do:


1. Ask to be referred back into my network provider as a plan exception, as this would be potentially harmful to my quality of care. (A nursing friend recommended to specify that changing networks could be detrimental to my health. I can ask my oncologist to write the letter).


2. As soon as I am seen after the contract ends, which is July 01, 2013, appeal the out of network charges with the insurance company.

3. Seek new Legislation by engaging the people who care to contact their local Comgressman so that Congress can create legislation that prevents insurance companies from terminating provider contracts after the open enrollment period begins. Patients have the right to know they can remain with their chosen medical team and treatment facility for the duration of the year. For patients who have chronic or potentially fatal medical conditions, being forced to change providers can be detrimental to the patient's continuity of care and potentially put the patient's health in a state of grave risk.

I plan to keep you all posted on my progress.

Click on the next paragraph to locate your Congressman's office:



I cannot end without stating how much I appreciate the level of access to healthcare provided to me. I always recognize that I am blessed, it could be worse, and to remain humble at all times. I thank God every day for my blessings.

Thank you for caring. Please share with amyone who would care to join this important effort.

Peace,

Denise

Mesothelioma or Ovarian Cancer?????????

Dear readers, I have something very unique to share with you today.


My mother's father died of mesothelioma, lung cancer, many years ago. Emory was an honest, hard working man from Kansas. He served our country as a medic in WWII for the troops building the Burma Road. He also helped to engineer buildings and pretty much anything this great country asked of him. After the war ended, it took 30 days on a carrier to return home from overseas. He never ate rice again.

Upon returning to Kansas grandma and grandpa decided that it was time to start a family. They started with my mom. Eventually he opened a small construction company in Denver. He built a number of small, quality homes, that made us proud. His integrity and word were important to him. He was precise and paid honest wages for honest work. People were proud of my grandpa. You may have heard my mom on the KLG and Hoda show talk about how her father was her inspiration.

When he was in his 70s he was diagnosed with mesothelioma, and the stage was too late for chemo. He had surgery, returned to Kansas with grandma, and eventually passed away after suffering unimaginable pain.  Our family was at his side when he died after receiving upstanding hospice care. It was so sad, we were all heartbroken.

He wanted chemo, he wanted to live.

I remember once visiting grandma and grandpa in Kansas after they purchased an old post office in a small town of literally 20 people. He did a little remodeling, built a tiny barn, he stocked it with 5 or 6 cows, a hand-full of chickens and planted some corn, not sure. The mini barn was picture perfect, pristine, a little cow palace I thought.

I remember there was not a street light to be seen along the dirt road that wound it's way to the highway. At night you could see billions of stars, hear the crickets sing, and breathe in the freshest air on the planet. The air was still, but alive.

They lived a good life.

Recently I received an email from Andrew Devine, Community Outreach for the

Here is what he had to say:

"Hi Denise,

I came across the Nobody Has Ovarian Cancer site while searching for organizations to reach out to about mesothelioma cancer. It's really great how you used your story to reach out to other women. Although it's rare, mesothelioma in the stomach can metastasize to the ovaries. This type of mesothelioma is often mistaken for ovarian cancer in CT scans, which is unfortunate for early diagnoses and treatment.

I contacted you because I’m part of the Community Outreach team at Mesothelioma Guide, and we are a new site reaching out to the community to provide up-to-date support to mesothelioma patients and family members. Essentially, we’re doing the same thing you are, helping people understand health issues, giving them someone to talk to and how they can be proactive about it, just in a different way."

I was surprised to learn of this possibility, that mesothelioma could be mistaken for ovarian cancer. I did not even know that there are different types of mesothelioma.

I am very thankful to Andrew for revealing this important, but rare cancer danger, so that it can be shared with you.

Please follow this link to learn more:
http://www.mesotheliomaguide.com/guide/guide-b/#


    I love you Grandpa, hope that I see you in heaven some day.



Below I have pasted a link and partial abstract from the The National Center for Biotechnology Information about this type of cancer.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396062/

Malignant peritoneal mesothelioma presented as peritoneal adenocarcinoma or primary ovarian cancer: Case series and review of the clinical and immunohistochemical features

Performing your original search, mesothelioma ovarian, in PMC will retrieve 2124 records.
Int J Clin Exp Pathol. 2012; 5(5): 472–478.
Published online 2012 May 23.
PMCID: PMC3396062


Salih Taşkın,1 Yeliz Gümüş,1 Saba Kiremitçi,2 Korhan Kahraman,1 Ayşe Sertçelik,2 and Fırat Ortaç1
1Departments of Obstetrics and Gynecology, Ankara University School of Medicine, Ankara, Turkey
2Departments of Pathology, Ankara University School of Medicine, Ankara, Turkey
Address correspondence to: Dr. Salih Taşkın, Ankara Üniversitesi Tıp Fakültesi, Kadın Hastalıkları ve Doğum Anabilim Dalı, 06100 Cebeci, Ankara, Turkey Tel: +90 532 3925195; Fax: +90 312 3203553; E-mail: salihtaskin@yahoo.com

Diffuse peritoneal malignant mesothelioma is a rare, progressive, and ultimately fatal disease and it can present as primary peritoneal carcinoma or ovarian cancer. Differential diagnosis is important to establish appropriate management. In this article the clinical presentation, immunuhistochemical and histopathological features of 8 diffuse peritoneal malignant mesothelioma cases presented as peritoneal carcinoma or ovarian cancer are evaluated. According to findings of all reported cases, we concluded that clinical distinction of malignant mesothelioma from ovarian cancer or peritoneal adenocarcinoma is very difficult. Differential diagnosis is reliably achieved by immune profile of the tumors with a systematic approach of both positive and negative mesothelioma markers.