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.