CDC Symptom Diary Card

Tuesday, July 16, 2013

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

Saturday, July 13, 2013

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




Wednesday, July 03, 2013

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

Thursday, June 13, 2013

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



Friday, June 07, 2013

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.