I go by #Servivorgirl. Celebrating almost 14 years since diagnosis of stage IIIC ovarian cancer, recently restaged to IVB. My blog is called Nobody Has Ovarian Cancer because I felt like a nobody upon the eventual correct diagnosis. Being told multiple times that I was too young to have ovarian cancer, I did not receive the proper testing. I am so grateful to Him for all those who allow me to share my love, to those who love me and those who treat my illness. I praise Him always.
Tuesday, September 03, 2013
Rare Cancer, Rare Friends
We lost a unique and lively woman this summer to Ovarian cancer. Her name was Jan. She said that she acquired ovarian cancer as a result of having Lynch Syndrome (see below).
She spent her life flying around the world working for Pan Am and then for Washington State. When her joyous life came to an unexpected end, she was loving her work at the helm of a ferry. Each day she would embrace the beauty of nature. I met her several years ago, along with several other women at an ovarian cancer seminar in Seattle.
Jan was strong, compassionate, fiesty, outspoken, deeply caring and full with inspiration. This whole time she was battling cancers. People amaze me.
Her sudden death, from an embolism, tanked me emotionally. I had the priviledge to hear from her the day she died, and her last words to me were to ask me to pray for another now departed sister, Judy.
I miss them, Jan and Judy. I miss many women whom I have come to know from having ovarian cancer. It is a blessing to have heard their cries and their joys.
As we embark on this month's mission to increase awareness of the symptoms of ovarian cancer and provide ways to help women receive good care, let us be mindful that real lives, real women, real families are devastated every day from their loss due to this tricky killer.
One of the best things you can do is to ask your doctor if they have materials in their office that educate women about ovarian cancer and other gynecological cancers.
Off to the right is an icon that says "Be Brave Ask Questions" This link will provide materials for individuals and professionals interested in patient education.
In honor of the dear friends we lost this year and to cheer on those who continue to survive with ovarian cancer, I will do all I can to prevent one more late stage ovarian cancer diagnosis.
Love,
Denise
Reviewed May 2013
What is Lynch syndrome?
Lynch syndrome, often called hereditary nonpolyposis colorectal cancer (HNPCC), is an inherited disorder that increases the risk of many types of cancer, particularly cancers of the colon (large intestine) and rectum, which are collectively referred to as colorectal cancer. People with Lynch syndrome also have an increased risk of cancers of the stomach, small intestine, liver, gallbladder ducts, upper urinary tract, brain, and skin. Additionally, women with this disorder have a high risk of cancer of the ovaries and lining of the uterus (the endometrium). People with Lynch syndrome may occasionally have noncancerous (benign) growths (polyps) in the colon, called colon polyps. In individuals with this disorder, colon polyps occur earlier but not in greater numbers than they do in the general population.
How common is Lynch syndrome?
In the United States, about 140,000 new cases of colorectal cancer are diagnosed each year. Approximately 3 to 5 percent of these cancers are caused by Lynch syndrome.
What genes are related to Lynch syndrome?
Variations in the MLH1, MSH2, MSH6, PMS2, or EPCAM gene increase the risk of developing Lynch syndrome.
The MLH1, MSH2, MSH6, and PMS2 genes are involved in the repair of mistakes that occur when DNA is copied in preparation for cell division (a process called DNA replication). Mutations in any of these genes prevent the proper repair of DNA replication mistakes. As the abnormal cells continue to divide, the accumulated mistakes can lead to uncontrolled cell growth and possibly cancer.
Mutations in the EPCAM gene also lead to impaired DNA repair, although the gene is not itself involved in this process. The EPCAM gene lies next to the MSH2 gene on chromosome 2; certain EPCAM gene mutations cause the MSH2 gene to be turned off (inactivated), interrupting DNA repair and leading to accumulated DNA mistakes.
Although mutations in these genes predispose individuals to cancer, not all people who carry these mutations develop cancerous tumors.
Read more about the EPCAM, MLH1, MSH2, MSH6, and PMS2 genes.
Monday, September 02, 2013
Monday, July 29, 2013
Four Year Cancerversary
As I walked out onto my small patio yesterday to film this clip of my healing garden I took a deep breath and thanked God for my life.
This day today, July 29, 2013, is the four year anniversary of my diagnosis of ovarian cancer. I remember how frightened I was, in pre-op, my mom and Aunt Deb rotating time with me to calm my nerves as the nurses prepared my body for what would be the most defining procedure of my life.
I remember how special it was that my Aunt Deb and my mom had flown out from California and Seattle to Sacramento to stay with me during and after for the surgery. I remember tears flowing when I saw them at the hotel by the hospital the night before. I looked pregnant and was in so much pain. By that point I could not go more than an hour before needing to lay down due to the pain. I was falling from weakness and no pain pills could relieve my misery.
We arrived bright and early for surgery that day and my imagination was running wild. I had no idea what the results of my surgery would really be and I was scared to death. Small things no longer mattered. I remember thinking that I had wasted so much of my life doing either nothing or the wrong things. I promised God that if I lived I would do good things with my time, help more people and be there for my family.
More tears were flowing when my beautiful sister arrived the day after surgery. I couldn't believe it. I hadn't seen her in several years and of course she arrived carrying a big smile, compassion and love.
Tears would come and go as my Aunt Deb and sister swapped time with me over a period of four weeks afterwards. That time with Mandy and my Aunt will never be forgotten. We got to talk, watch movies, scramble to get medical paperwork transferred to the SCCA, daily visits to the oncologist, and managing the transition to Seattle. Meanwhile mom was in Seattle working hard to rearrange her home so that I could live with her temporarily during and after chemotherapy. None of us knew how this would change my life or their lives.
Optimal debulking surgery is highly invasive, called "The mother of all surgeries". I never want a major surgery like that again. Don't believe them when they say that you should be back to somewhat normal in about 6 months, it's not true.
Good friends like Barb and Craig and Randy and Mike and Pier, along with friends from church, helped me cope and pack for my future life in Seattle. They took me to doctor appointments, transported family back and forth to the airport, and offered much needed hope and cheer.
That time between surgery in California and meeting my new gynonc in Seattle was also filled with rage. My Aunt, mom and sister were there to hear my story over and over and over and over. How could I have advanced aggressive ovarian cancer and not one doctor had a clue? How was that possible? It is a question that sadly goes unanswered for thousands of other ovarians each year. I was just so angry. I need to say though that my surgeon came about not as a result of my OB/GYN, but from having a really smart hematologist. He took over the reigns and referred me to the correct gynecological oncologist, and that is why I had a head start during this time in my life.
When my brother Arnie arrived to drive my car to Seattle, I almost fell over from crying. Barb had helped me pack the car. I wanted to soak up as much time that night as I could with him, catching up on my niece and nephew and listening to his music library. My sister flew with me to Seattle from Sacramento. Craig drove what remained of my few possessions to Seattle from Sacramento about a week after I arrived in the Emerald City. The support I received was beyond anything I could have imagined.
I started chemotherapy at the Seattle Cancer Care Alliance with a new medical team, the team I still have today. Thank you God for bringing me here. I got two years of a break and then went into a recurrence about a year and half ago. I am still receiving treatments for my cancer, and start Avastin infusions
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
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