CDC Symptom Diary Card

Thursday, September 12, 2013

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

Tuesday, September 03, 2013

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.




Monday, September 02, 2013

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

Monday, July 29, 2013

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

Tuesday, July 16, 2013

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.....