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.

Jolie Being Proactive To Avoid Ovarian Cancer

By clicking on this paragraph, you will be taken directly to the article from Healthday. I am so sorry that I am unable to add the direct link.




Dear readers, this article about Angelina Jolie's decision to also have her ovaries removed is well written and informative. It provides educational information that helps to further explain all the options for managing preventative measures related to breast and ovarian cancer.


Taking this measure can be a life saving measure, and I am so proud of her for being proactive and sharing this journey with us. Ovarian cancer is not well understood, underfunded in terms of reaearch, and is the deadliest of all the gynecological cancers.

Bless you Angelina and may you always be healthy and smiling!

............



Angelina Jolie Will Have Ovaries Removed to Lower Chances of Cancer: Report
Actress has already had double mastectomy due to gene linked to high risk for breast, ovarian cancer

May 15, 2013

By Steven Reinberg
HealthDay Reporter

WEDNESDAY, May 15 (HealthDay News) -- Film star Angelina Jolie will have her ovaries removed to help lower her odds for ovarian cancer, People magazine reported Wednesday.

The news comes just a day after Jolie, 37, revealed in an article published on the editorial page of The New York Times that she had undergone a double mastectomy. Jolie wrote that she made the decision after learning she carried a gene, called BRCA1, that is linked to a significantly higher risk for both breast and ovarian cancers.

[See Diet Changes That Might Cut Breast Cancer Risk.]

Now, Jolie "is also planning to undergo surgery to remove her ovaries," an operation known as oophorectomy, according to People.

Jolie's mother, actress Marcheline Bertrand, died of ovarian cancer at the age of 56.

According to the Mayo Clinic, preventive removal of the ovaries can cut the risk of ovarian cancer in a woman with a BRCA mutation by 80 percent to 90 percent.

In the Times article, Jolie said she began the process to have both of her breasts removed in early February.

[See 4 Steps to Take Now to Lower Your Breast Cancer Risk.]

Writing about her mother's nearly 10-year-long battle with cancer, Jolie said: "She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was."

Jolie, who has six children with her companion and fellow film star Brad Pitt, said she often finds herself trying to explain to her children about the disease that killed her mother. "They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a 'faulty' gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer," she wrote.

[See Gaining a Pound a Year After Age 20 Nearly Doubles Women's Breast Cancer Risk.]

The BRCA1 and related BRCA2 genes belong to a class of human genes known as tumor suppressors. According to the U.S. National Cancer Institute, in normal cells, the BRCA1 and BRCA2 genes help to maintain the stability of a cell's genetic material -- called DNA -- and help prevent uncontrolled cell growth. Mutation of these genes has been linked to the development of hereditary breast and ovarian cancer.

The cancer institute estimates that 14 out of every 1,000 women in the general population will develop ovarian cancer in their lifetime. However, that risk rises steeply among women with mutations in either the BRCA1 or BRCA2 genes to anywhere between 155 to 400 women per 1,000.

These genetic mutations are most commonly found in Jewish women of eastern European descent. Also, Norwegian, Dutch, and Icelandic peoples have higher rates of BRCA1 and BRCA2 mutations, according to the cancer institute.

Dr. Michael Cowher, a breast surgeon at the Cleveland Clinic, said the BRCA mutation doesn't just affect women's breasts or ovaries -- males who carry the genetic mutation face an increased risk of breast and prostate cancers. Also, there's an increased risk of pancreatic cancer in BRCA2 and some BRCA1 carriers, he said.

[See Weight Gain Ups Breast Cancer Risk: 7 Ways to Avoid the Bulge.]

Oophorectomy does come with its own risks for premenopausal women, according to the Mayo Clinic, and the decision should be carefully considered. Risks include bone-thinning (osteoporosis), menopausal symptoms such as hot flashes and an increased risk of heart disease.

The procedure itself "is a generally safe procedure that carries a small risk of complications, including infection, intestinal blockage and injury to internal organs," the Mayo Clinic said.

In regards to Jolie's double mastectomy, experts stressed that breast removal isn't the only choice facing a woman with BRCA mutations. "There are other options they can discuss with their doctor," Cowher said. "These include chemoprevention with medications like tamoxifen, and increased frequency of clinical and image-based screening regimens," he explained.

A double mastectomy involves removing as much "at-risk" tissue as possible to reduce the risk of cancer. The procedure does not, however, guarantee complete protection against cancer, according to the cancer institute.

[See Breast Cancer Chemotherapy: Making Bald Beautiful.]

Dr. Stephanie Bernik, chief of surgical oncology at Lenox Hill Hospital in New York City, called a double mastectomy "the best option for someone who is BRCA-positive."

"The risk of cancer is extremely high and we know that you can watch them, but there is no guarantee that you will catch the cancer at an early stage," she said. "If you have the ability to prevent a cancer, that's probably the best route," Bernik explained.

"Not everyone wants a prophylactic mastectomy and they don't all do that," Bernik said. "But women should certainly be informed."

Bernik said more women are opting for the procedure. "The reconstructive options have improved dramatically over the past 15 years, so women can at least feel confident knowing that if they remove their breasts they will be left with a very good to excellent cosmetic result," she said.

Writing in the Times article, Jolie said, "My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.

"Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much as I could. I made a decision to have a preventive double mastectomy."

[See Sex After Breast Cancer.]

Jolie said the process of having her breasts removed was finished by late April, and included the reconstruction of both breasts with implants. "There have been many advances in this [reconstruction] procedure in the last few years, and the results can be beautiful," she wrote.

According to the cancer institute, genetic testing can reveal whether a woman carries a BRCA1 or BRCA2 mutation. There are benefits to such testing, whether a woman receives a positive or a negative result. "The potential benefits of a negative result include a sense of relief and the possibility that special preventive checkups, tests, or surgeries may not be needed. A positive test result can bring relief from uncertainty and allow people to make informed decisions about their future, including taking steps to reduce their cancer risk," the agency said.

For her part, Jolie said: "I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don't need to fear they will lose me to breast cancer."

"For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices."

[See Free Services for Women With Breast Cancer.]

More information

To learn more about the BRCA1 and BRCA2 mutations, visit Susan G. Komen for the Cure.

Copyright © 2012 HealthDay. All rights reserved.



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Tags: ovarian cancer, cancer, genetics, women's health, breast cancer

Angelina Jolie, An Angel On Earth

Living With Tumors

I had my Doxil last Tuesday. Somehow the extra dose of anti-nausea meds on Saturday and fluids did not stop yesterday's crash. It was really warm in Seattle, but I was just a mess, really sweating, huge headache, terrible nausea. I was bed bound all day.Thank the Lord my sister woke me up to see how I was doing. I have been trying to re-hydrate and settle out a bit.

So I feel weird right now, but really wanted to share some updates and thoughts....and apologies for the typos....sorry. I am unable to add links right now, will edit and add when I get to a computer.

My latest CT scan shows that tumors are not growing and not shrinking. Since the last CT scan, there are no new tumors. I did up a little chart and compared notes and I think I have 9 tumors with a couple of teeny tiny mm size nodules on the lungs. The tumors are mainly 1-2 cm in diameter. The radiology reports do not follow exact same format, so this information may be off a little, sorry. The report says that I have peritoneal mets, but no new tumors and so far it is stable.

That is great news, but also kind of disheartening. My gynonc is just really going to bat for me, and we are doing several more rounds of Doxil and then maybe switch to Avastin. Avastin would slow or stop the growth of blood vessels that feed tumors. My fatigue is through the roof, still have never ending upper abdominal pain, and the new strategies to help with panic disorder have just begun.

All I want is quality time with those whom I love, a break, a chance for us to play, a leisurely warm ride on a boat, anything. Between myself, mom's heroic efforts to live each day and all the regular stuff families do, plus I do need to work, will we ever have that? Not to be selfish.......cannot talk about that.

if you have cancer and start out on the lower rungs of the money ladder, it is not easier. That is a different discussion..........

I am remaining hopeful about my treatment. My choice is to have hope or not have hope. I choose hope.
My gynonc said that there are people who live with tumors. I can do that.

The trick is if we stop Doxil, what will happen? Will my tumors start growing again and if so how fast? I have been on chemo since Jan/Feb 2012 for my recurrence and the side effects are beginning to take a toll. I am way too immunocompromised to get a stronger chemo or higher dose and my complicated medical condition precludes me from participating in any clinical trials.

My gynonc's nurse said that I have lived longer than expected.....I take that as a positive, the family "tough gene" that says never give up, no matter what. I did not ask her more, maybe next time.


I was finally confirmed two weeks ago, and my sponsor was Sr. Marie Giovanni Paulo. She dedicates her life to God every day. She is a sister of S.O.L.T. The convent is affiliated with St. Alphonsus Parish in Seattle. I feel very blessed. Tonight I requested a lay minister because I sleep too long and just cannot wake up for mass.


With prayer and her guidance, my confirmation name is Denise Raphael.

I mention this because faith knows no bounds and I was led to Sr. Marie for a reason.


World Ovarian Cancer Awareness Day is marked this 8th day of May, 2013.

I am praying that after reading this post that you and your loved ones take a moment to learn more about ovarian cancer.

Since 2009, when I started down this road, the grasses are greener. More people want to solve this deadly problem. The best cure for cancer is prevention, but in our case, we need more than that.....there is no prevention.

Raise awareness but also please donate good money towards research and help your sisters in need.

God Bless you

Look For The Helpers "Mr. Rogers"

A day to remember, when the good people rushed in.  

On April 15, 2013 two bombs exploded near the finish line of the 117th running of the Boston Marathon.  Four souls, one an 8 year old boy, are in heaven and almost 200 people were badly injured.  By the end of the week one of the bombers would be dead and the other in custody, hospitalized with wounds related to his battle with police. 

Forces from all over the country joined the Boston Police Department and the FBI to hunt down the sociopaths, make them accountable, and release us to start the healing process.  Many of the wounded received war-like injuries, losing arms and legs, sustaining massive head injuries, along with experiencing an unimaginable level of terror.

The bombings were timed so as to happen while many of the runners who represented sweet charities were about to cross the finish line.  The runners, their cheerleaders, family members, spectators, friends, business owners and the media had no idea of what would come of this day in April.  It was a beautiful day for this most beloved day in Boston.  

We know that the world's people ARE good, and that somehow out of all of this torture and wailing, grief and fear, we will be stronger, taller, hopeful and able.  God Bless the people of Boston, the runners, the families of those who have died, the first responders, the medical professionals, the media and the unrelenting officers and agents who captured the terrorists.  

When the hunt was over, people ran into the streets, cheering for the officers and chanting "USA"  over and over.  We will never back down, ever.

God Bless America

http://www.whitehouse.gov/blog/2013/04/18/face-evil-boston-has-shown-americans-will-lift-what-good

From the whitehouse.gov webpages:

President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

In the Face of Evil, Boston Has Shown that Americans Will Lift Up What Is Good
President Barack Obama delivers remarks at an interfaith prayer service at the Cathedral of the Holy Cross in Boston, Mass., April 18, 2013. The service was dedicated to those who were gravely wounded or killed in the bombings in Boston. (Official White House Photo by Lawrence Jackson)

President Obama and First Lady Michelle Obama today were at Boston's Cathedral of the Holy Cross to attend Healing Our City, an interfaith service dedicated to those who were gravely wounded or killed in Monday’s bombing near the finish line of the Boston Marathon.

In his remarks, the President paid tribute to those whose lives were taken by the bomb blasts on Boylston Street -- to Krystle Campbell, 29, who was "always smiling." And to Lingzi Lu, a 23-year-old graduate student from China who had come to "experience all this city has to offer." And finally to Martin Richard, the 8-year-old boy from Dorchester whose mother and sister remain in the hospital, fighting to recover from their own injuries. Martin, said President Obama, leaves us with two enduring images, 'forever smiling for his beloved Bruins, and forever expressing a wish he made on a blue poster board: 'No more hurting people. Peace.'"

President Obama also praised the people of Boston, a city both he and the First Lady once called home. Like thousands every year, the two lived there as students -- just one of the many reasons, the President said, that Boston has a hold on so many hearts. "Every fall, you welcome students from all across America and all across the globe, and every spring you graduate them back into the world -- a Boston diaspora that excels in every field of human endeavor," he said. "Year after year, you welcome the greatest talents in the arts and science, research -- you welcome them to your concert halls and your hospitals and your laboratories to exchange ideas and insights that draw this world together."

In fact, the President said, whichever terrorists are behind the attack on Monday picked the wrong city as a target, because Boston will not be terrorized or intimidated:

You’ve shown us, Boston, that in the face of evil, Americans will lift up what’s good. In the face of cruelty, we will choose compassion. In the face of those who would visit death upon innocents, we will choose to save and to comfort and to heal. We’ll choose friendship. We’ll choose love.

Scripture teaches us, “God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” And that’s the spirit you’ve displayed in recent days.

When doctors and nurses, police and firefighters and EMTs and Guardsmen run towards explosions to treat the wounded -- that’s discipline.

When exhausted runners, including our troops and veterans -- who never expected to see such carnage on the streets back home -- become first responders themselves, tending to the injured -- that’s real power.

When Bostonians carry victims in their arms, deliver water and blankets, line up to give blood, open their homes to total strangers, give them rides back to reunite with their families -- that’s love.

That’s the message we send to those who carried this out and anyone who would do harm to our people. Yes, we will find you. And, yes, you will face justice. We will find you. We will hold you accountable. But more than that; our fidelity to our way of life -- to our free and open society -- will only grow stronger. For God has not given us a spirit of fear and timidity, but one of power and love and self-discipline.

After the service, President and Mrs. Obama stopped by Boston's Cathedral High School to thank some of Boston's first responders and volunteers for their tireless efforts over the past few days, and then the President visited patients, their families and hospital staff at Massachusetts General Hospital, while the First Lady stopped by Boston Children’s Hospital and Brigham and Women’s Hospital.

You can watch President Obama's remarks below or on YouTube:

PTSD And Breast Cancer, Study Opens Healing Doors

Each day brings a repeat of a series of events that are predictably unpredictable.  A battle waged not by me but from deep within my mind, an unhealthy response to the fear of death.

Amended April 16, 2013

For several nights last week I had nightmares. One night it was about a gunman in a shopping mall. I plan to write out the dream in a separate post. I really enjoy doing the writing, not so much experiencing the nightmare. The next night another nightmare about my life as a member of the poorer community, and how being in the lower ranges of the rungs on the ladder has created a bit of unwanted stress. Not in the way of having or not having beautiful possessions, but in a way of the struggle for basics. I don't want to leave this earth in debt, and well, not sure what els to say there.

So I saw my psychiatrist yesterday and after further detailing my experiences, a more prominent concern is a Panic Disorder. I had some confusion because I have nightmares on a regular basis, but it was only for a few months after my diagnosis and surgery that I was fearful and enraged. So stress, trauma, potential PTSD would have been short term......but went unaddressed. My rage was a real barrier for me.

Thank you for listening...back to the article.....


Recent research has spoken of such things when it comes to breast cancer.




http://jnci.oxfordjournals.org/content/early/2013/02/21/jnci.djt024.abstract


JNCI J Natl Cancer Inst
(2013)
doi: 10.1093/jnci/djt024
First published online: February 21, 2013

.......
Conclusions Nearly one-quarter of women newly diagnosed with breast cancer reported symptoms consistent with PTSD shortly after diagnosis, with increased risk among black and Asian women. Early identification of PTSD may present an opportunity to provide interventions to manage symptoms.
.......

I am not surprised at all, cancer of any kind is traumatic.  If you know me you know I am wondering when this type of research wii be done with females who are diagnosed with ovarian cancer.

If you know my story, like many other stories, the doctors are always completely blown away, shocked that we have ovarian cancer.  Those of us ladies who heard whispers that the subtle symptoms did mean something important are always shocked, but in a different way.

It is more of a stunned feeling of disbelief because usually for a significant period of time we were crying out that something is wrong, please find it and fix it.  I was told three times that I was too young for this deadly disease.

Well this disease is much less deadly if caught early.

So the stress comes from a doctor finally saying they know what it is and gosh golly I think we need to get you into surgery and rule out ovarian cancer.  And awe shucks I sure am sorry.  And the shock comes from after learning that after everything but the kitchen sink may need to be removed you must do chemo.  

Then the traumatized self does even more research to discover that it is the deadliest of all the gynecological cancers, and we get to read the statistics.  Then some of us are repeatedly traumatized because we may be single, may need to move, may not have health insurance, and because the survival rates are not that great, live this yo yo life of wanting to make the most out of every situation and live as long as possible but not make any real long term plans because, well, we have ovarian cancer. Push. Pull. Push. Pull.

Eventually you survive by letting it Be, and know Today. Letting God take the wheel brings about incredible peace.

I do that more and more, and allowing God to be in charge has made this whole ordeal much more of a blessing. But the pain is still here. The cancer is still here.

If I can find a peaceful space to allow myself time to connect the dots and move from "why" to "how" and "what", I use my pain to help others. Each day is a mini hike up the hill. The information about PTSD and breast cancer is enlightening, and brings me hope. Women with ovarian cancer need much more emotional and spiritual support. Hopefully this research will create better resources to directly target the stress of cancer, including ovarian cancer.

I was recently diagnosed with Panic Disorder. It took a very long time to figure out what was going on.  I was much more angered than some because I had asked the questions and was denied a CA125 in California.  Suffice it to say that I had symptoms, just not any intelligent gynecologist at the time.

Loss of body, threat of loss of life, loss of home, loss of job, loss of money, loss of status, loss of credibility because chemo gave me severe anxiety.   Loss of the future. Serious stuff for any person to handle.

For many women the loss of bearing their first child ads an entirely new dimension of suffering. Loss loss loss loss.....pain pain pain and repeated assaults on our bodily functions and mind.

I got punched in the stomach the day after my debulking surgery.    I have said this many times, I find the irony classic.    Admitted for optimal debulking surgery, not able to get out of bed yet, on oxygen, massive pain killers, just learning I have Stage IIIC ovarian cancer with aggressive tumors and having been living with unbelievable abdominal pain.  

How it happened was a technician came in my room to take my blood pressure.  My right arm was used.    The cuff was a bit too big, but she secured it tightly.    After reading the pressure she allowed all the air to escape from the arm cuff.  My little arms were not in the way of the tech simply sliding the cuff off of my arm.  There was plenty of room and usually that is what the techs or nurses do.   This gal was bent on unwrapping the cuff.  Velcro always wins and in this case nothing different would have happened.   Mind you I am on my back, fresh staples from my sternum to my pubic bone, already crying from the pain, and she Pulls and pulls and pulls and pulls and WHAM! The cuff loosens and suddenly her fist is embedded in my upper abdomen.   I heard a wailing sound come out of me that has never since returned. It Hurt Like hell. It hurts to wear a bra to this day.

I yelled and screamed and cried and cursed and and and.   They took a report, refused to do an X-ray, and to this day that exact spot is in constant pain.   It never ever ever dies. We have done thorough and exhaustive testing and nothing physical is present to cause this never ending pain. So, this abdominal pain is part of my anxiety attack.

Now with the evolving diagnosis of Panic Disorder, the predictable order of events is that area of pain intensifies greatly, nausea rolls in, I get flushed and red, I start to breathe quickly, and the release begins when I am sweating profusely.  It takes 5 minutes to 10 minutes from start to get back to the stable level of nausea and fatigue I usually have.

I go through this multiple times per day, multiple triggers are known and other times I have no clues as to why I have this event.

For the longest time it was thought that I was just having hot flashes.  Hot flashes are not normally precipitated by severe abdominal pain or nausea.

What I can do is use my talent to pray for others who suffer. I live with cancer and am learning to live with this Panic Disorder.    Maybe my medications will be changed, not sure.

The biggest cost has been that I as a person, me Denise, am not always clear with my communication and when I have these attacks, I feel that other people do not know what to do.

Being proactive when in the right situation can go a long way, just saying that I need some air, not to worry, and I grab a really cold cloth to help manage the surge of heat and sweats.  

I am just in the beginning stages of learning about this. I take Lorazepam and Effexor XR.   I do not want stronger meds right now.  My gynonc has been so very supportive of this and does not pressure me to process or handle more than I can.    I trust in her.  I trust in God I will now also be adding another medication to help.


If you have a story about ovarian cancer and getting a new diagnosis of a mental disorder, depression, anxiety, PTSD, I would like to know.

You are free to post them in the comments section or you can follow me and send me a private email.

Ovarian Cancer and Mental Health are enmeshed together, and it is that along with spiritual, social, financial, community, family and medical support where we address those concerns and create a viable safety net.

God Bless You
Servivorgirl

Gynecology Oncologist the Only Surgeon For Us

The hum of the IV pump is soothing .....purrrrrrrrrrrrrrr dzt purrrrrrrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt. purrrrrrrrrrrr dzt purrrrrrrrrrrrrr dzt. purrrrrrrrrrrrr dzt


Sitting in my quiet chair, yay, at the SCCA, for my 15th consecutive chemotherapy. ahhhh. for those of you not familiar with my current treatment plan, I am on DoxiL.

I'm bloody tired. so tired. so tired. At the risk of sounding like a whiney hiney, it is the truth. These last few treatments have not eased up on the fatigue like what has happened in the past.

I need to share a bit about the side effects of this medication. Fatigue is getting worse, it feels like my body carries lead all the time and that blood has been drawn from inside and not replenished. If I get 12-14 hours of sleep, I feel more refreshed. My mom has been my alarm clock for the past month. She calls me in the morning. I call her at night after my part time work ends. We have a little system that works.....

My skin isn't too bad, lots of redness very few blisters. I get flushed all the time though and hot and sweaty.....eeeew. Tired of that, may be the anxiety disorder.

Neverending abdominal pain since 2009, right where my bra line crosses the top of my abdomen.

My vision is really blurry sometimes now. I am developing cataracts from prednisone. my teeth are falling apart and my muscle tone is weak. I am still very forgetful, get lost easy and do not always use the best judgement.

A huge reprieve from this state came last week when I got to see family in Colorado. I had not been home since 2004 or 2005. My awesome brother let me stay at his home and as luck would have it, my niece and nephew were on spring break. My first day there the snow started it's roar, an I had not yet been to sleep. My Uncle had picked me up from the airport and took me to breakfast. It was nice to catch up on family and relax.

Afterwards, up to Golden to visit with my aunt and another cousin. He has grown like. weed and is now a responsible young adult. Then on the way to take me to see my brother, we picked up my other cousins who has cerebral palsy.

He was so excited to see me as I was to see him. Shawn would call me every day to say hello when I has on a harsher chemo back in 2010. It was so nice that he is in an adult daycare run by an amazing teacher. She treats him as an adult, with compassion and respect, and jokes with him all the time.

Once Shawn was in the van we were off to see my brother and his kids. The snow was falling by now, but we Arrived finding them playing basketball in the driveway. Everyone was all smiles. After some photo shots and catchup, my uncle and Shawn headed home. Now time to settle in and breathe for a minute.

My brother was so generous, truly, to open his home for me. I was blessed even more because the kids were on spring break and this would be the first time in a long time that I would get to just hang out and have fun.

So my nephew showed me his latest toys and winning medals from roller hockey. My brother, his father, is the coach and they have won many national championships in the last few years. To see a little boy light up as he grabs one of many deserved medals and explain in full detail the game, the road trip along the way, how the players did, how dad did, how he did and talk about the kids who are the nicest players made me really proud. Proud to be his aunt and really proud of my brother. Sports ethics and how to be a good team and leader are skills that help in every aspect of our lives.

Since I am talking about hockey, I have to also mention that on Sunday night we ventured out into the icy snow to proudly watch my brother play ice hockey. I had a blast. I had never seen him play hockey...he rocks. My nephew and niece were giving me the run down of the rules along the way. The game ended in a tie, 4-4, so they had a shoot out. My brother scored the winning goal. YAAAaAAY

My niece showed me all the great things about photography, being on this years yearbook publishing committee, and I was privileged to sit in with here while she attended jazz dance class. She is a beautiful dancer, light on her feet and very smart. Our cookie adventure was lots of fun. She created an oatmeal sticky bar that was just delicious, using the outline of a recipe but mainly her imagination.

During the week we watched several adorable movies, like "Wreck it Ralph" and "Hop". I pry had more fun than the kids when playing Rock Star on the Wii. So fun

The kids are just so polite, respectful, inclusive, talkative and fun. My brother is a great dad. Had a hole in my heart for a few days after returning home. The only way to get to know kids is to spend time with them.

I met the rest of the family on mom side at Olive Garden. Aunts, uncles, cousin Shawn, brother and his kids. The time flew too fast. I have always been the shy one in a group, and this was no different. I found myself wanting to record it all, the jokes, the stories, the moment. I was immersed in the table talk. I miss my family in Colorado. It was hard to say goodbye without shedding a few tears.

I never conscientiously decide that this moment could be the last time I see someone, but that thought just creeps in without warning and zappo.....tears start to flow.

Seeing a old friend from high school, Debbi and two other friends Rebecca and Gino, really lifted me too. Had not seen Debbi for 30 years. it has probably been 15 years since I had seen Rebecca and Gino. Now I can keep in touch easier. My friends are still the same great friends. Amazing. I love my friends and hope to see them again soon. Unfortunately there where other friends whom I would have loved to have seen but just not energy. I felt so bad, but we will see each other. Gino is a fashion designer and I will probably post any of his future shows on this blog.

Thank you God for my loving family and friends. Thank you Arnie.

It would do a world of good if cancer patients could have cancer-cations, a few months of time to travel. visit family, do a few bucket list items and just live in normalcy. The window is there already, but we are working again waiting for the next recurrence.

If we could legally be allowed a recovery period that extended a few months after the side effects wore off, then we can be more able bodied and enjoy what for some people may be their last wishes. To travel while on chemo is a real challenge, can and is done, but would be better enjoyed while NED.

So my sweet and loving sister, who is a wife and mom of two, watched over my sweet kitty Marilyn.

My furry angel was in great hands. I know she gets lonely because she sleeps by the front door when I am gone. She was treated like a queen while was gone. Thanks Mandy.

One of the reasons, one of many, that I can sit here and blog about m life with ovarian cancer is because in California my hematologist was a lot smarter than my OBGYN. The ovarian cancer was suspected but not confirmed because ovarian cancer can only be diagnosed by the surgery used and pathology report confirming the tissue, type and stage.

I know I have an angel. The hematologist took the case away from the OBGYN after learning that the OBGYN wrongly referred me to a regular gynecology surgeon. Thank you Lord.

Referral to a gynecological oncologist is the proper surgical referral. We as patients must do all we can to be empowered and educated, so that we can protect ourselves from bad care. Not all women will have this information handy, or may not have access to a specialized hospital that has this type of surgeon.

I had been doing a lot of research online and in the library, but the type of surgeon needed did not stand out like it should have. Your initial debulking surgery is the number one predictor of how well you will recover from
treatment and continue to enjoy life.

A regular surgeon is not qualified for the surgical removal of tissue caused by ovarian cancer. Always remember this and share when needed.

Happy Easter and much love to my family and friends.

I pray you benefit from this blog, as it is here to serve you, help you, in whatever way reaches you.

Love,
Denise