Tuesday, December 31, 2013
Monday, December 23, 2013
Christmas Without The Dearly Departed
The tree this year stands at 2 feet, and a tiny string of lights seems just enough. The complexity of emotions revealed at Christmas just after the death of a dear loved one can be impossible to manage. We pray for the Grace of God and hope to behave gracefully at this most bittersweet time of year.
To reconcile it all makes no sense. Be and breathe. Cry and rejoice. Trust in Him to comfort you. We can only do the best we can do, in each hour and day. Take no stock in the material and offer a smile of joy.
There is a beautiful poem below the tree:
Christmas In Heaven
Published by TCFAtlanta.Org
Wednesday, November 27, 2013
Saturday, November 16, 2013
Friday, November 08, 2013
Tuesday, October 29, 2013
Thursday, October 17, 2013
I found this series on "TED Talks" this evening. I was looking for something interesting, not related to politics or our healthcare system. Our government is now back in business and the Affordable Care Act remains law. Finally can rest.
After watching this episode of "TED Talks", I realized that she is right, we need to spend much more time engaged using our right hemispheres.
Please watch to learn why and also learn some fascinating things about the experience of a stroke.
Peace and Love,
Why you should listen to her:One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...
Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."
Saturday, October 12, 2013
Here is a copy of resources from The White House
State-by-State Monthly Marketplace Premiums
Get Started in the Marketplace
Wednesday, October 09, 2013
Tuesday, October 08, 2013
Monday, October 07, 2013
Saturday, October 05, 2013
More Cancer Research Available Because of The Affordable Care Act
Insurers required to pay for routine care costs in clinical trialsmar
Thursday, October 03, 2013
Sunday, September 29, 2013
With National Ovarian Cancer And Gynecological Cancer Awareness month wrapping up and Breast Cancer Awareness Month beginning, it is a perfect time to learn more about genetic mutations.
I have a BRCA1 mutation, that was detected after my ovarian cancer debulking surgery. As par for my course, the California insurance company denied the test.
The test was approved in Seattle. Seattle is where my best care has ever been.
This testing is critical.
My relatives are at a higher risk of breast and ovarian cancer . If I had not have been tested, we would not have known our options in these cases. My relatives have choices that could avert cancer, if possible.
Earlier in the year I spoke out about how proud I was of Angelina Jolie, for being pro-active with respect to her bilateral prophylactic mastectomy.
If I would have known about this testing before 2009, I would have had my ovaries removed for certain, and probably preventative breast removal surgery as well.
Currently I am in a monitoring program, one breast MRI and one mammogram per year coupled with regular physical exams.
Because I am on Avastin I cannot have a major surgery. If you are in chemo you can't have prophylactic bilateral mastectomy. So we watch, and so far I am good. Thank God!
On a personal note, I am always really tired and need 12 hours or more per night to sleep. I am in more pain, but my markers seem to be getting better. I will stay on Avastin as long as God and my wonderful gynonc allow.
Praying for a screening test for ovarian cancer.....and continued research for cures. I am also praying for more daily living resources to help us pay bills, rent, co-pays and laws that allow for access to resources that otherwise require a terminal status. It is weird to have a cancer that is likely to kill you but not be able to access much needed resources that can ease just a little of the daily burden.
Unless you were wealthy before cancer, this is what happens after ovarian cancer. It is costly in so many ways and really, who prepares for cancer?
If I had breast cancer I would have access to more resources.
That is just wrong on so many levels!
I have to say that I am so proud of the SCCA for having a patient and family fund program, because they have helped me here and there. Cancer Lifeline in Seattle has also been an invaluable resource for me
Peace and Love,
Friday, September 20, 2013
Monday, September 16, 2013
She just told me that the Seattle Great Wheel will be lit TEAL all day!
The start time is 10am and they will turn off at 11pm.
She welcomes all and anyone who wants to gather on Pier 57 and around the area to share in this symbolic event and to educate others.
There are no formal events on the pier directly, but I do know individuals who are attending.
When I am down, I listen to "Strong Like You" written and composed by Kathie Lee Gifford and David Friedman. This was sung to my mom, and every time I listen I also think of our sisters who are struggling or who have struggled.
Chandra Lee Schwartz sings it beautifully and you can see the link on my site off to the right.
"On God's Table there are no crumbs" .....
Please let me know if you will be there!
Thursday, September 12, 2013
Have you ever seen the Seattle Great Wheel? It is quite a spectacular site. A giant Ferris wheel firmly rests on the boardwalk of Pier 57, overlooking the beautiful waters of Puget Sound. From their website at
- The Seattle Great Wheel is the largest observation wheel on the west coast, standing 175 feet tall.
- The wheel has 42 fully-enclosed gondolas. Each gondola seats up to eight people, meaning the wheel can hold over 300 passengers at any given time.
I am but a person to whom they responded.
As I will be watching the brilliance of teal in the sky, I will remember all of our fallen angels. I will remember the supportive words, encouragement and love from my family and friends. I will feel blessed to have had such excellent surgery and chemotherapy. I will want for nothing less for every other woman with this deadly disease.
We will raise our voices and help others to learn more about what ovarian cancer is, does and costs in terms of quality of life. We will also share the blessings that come from living through, suffering through and treating through the many facets of this complex and shifty disease.
Embrace this moment and save the date. Tell your friends. Go for a ride if you are in Seattle that day.
I want to share my utmost and sincerest gratitude to you and the people with The Seattle Great Wheel for supporting Ovarian Cancer Awareness Month. You have given rise to our voices, elevated the calls and cast a beautiful light in the midst of our struggles. Many people and organizations will benefit from this beautiful act of support and kindness.
A patient with ovarian cancer
The wheel will be lit with Teal on Wed September 18th in awareness for ovarian cancer.
Please feel free to let anyone know.
The wheel will be lit from 7-10pm.
Communications Director Pier 57
For those that may need this page to promote this important symbolic event, I have also included a link to our President's Proclamation for National Ovarian Cancer Awareness Month, this September 2013.
Official Presidential Proclamation: September 2013 is National Ovarian Cancer Awareness Month
Peace, Love and Health,
Tuesday, September 03, 2013
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.
Reviewed May 2013
What is Lynch syndrome?
Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps. In individuals with this disorder, colon polyps occur earlier but not in greater numbers than they do in the general population.
How common is Lynch syndrome?
In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year. Approximately 3 to 5 percent of these cancers are caused by Lynch syndrome.
What genes are related to Lynch syndrome?
Variations in the MLH1, MSH2, MSH6, PMS2, or EPCAM gene increase the risk of developing Lynch syndrome.
The MLH1, MSH2, MSH6, and PMS2 genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer.
Mutations in the EPCAM gene also lead to impaired DNA repair, although the gene is not itself involved in this process. The EPCAM gene lies next to the MSH2 gene on chromosome 2; certain EPCAM gene mutations cause the MSH2 gene to be turned off (inactivated), interrupting DNA repair and leading to accumulated DNA mistakes.
Although mutations in these genes predispose individuals to cancer, not all people who carry these mutations develop cancerous tumors.
Read more about the EPCAM, MLH1, MSH2, MSH6, and PMS2 genes.
Monday, September 02, 2013
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
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.
Monday, July 29, 2013
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
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.
Tuesday, July 16, 2013
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.
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.
Saturday, July 13, 2013
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.
Wednesday, July 03, 2013
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!
Thursday, June 13, 2013
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.