I say this because some of the most common symptoms, persistent bloating, abdominal pain, getting full quickly, frequent urinatation, along with things like unexplained constipation, severe fatigue and lower back pain may not send you to your gynecologist. You may wind up getting a colonoscopy before you get a transvaginal ultrasound and CA 125.
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.
Wednesday, May 07, 2014
Be Confident
I say this because some of the most common symptoms, persistent bloating, abdominal pain, getting full quickly, frequent urinatation, along with things like unexplained constipation, severe fatigue and lower back pain may not send you to your gynecologist. You may wind up getting a colonoscopy before you get a transvaginal ultrasound and CA 125.
Monday, May 05, 2014
WORLD OVARIAN CANCER DAY MAY 8th
• Difficulty eating/feeling full quickly
• Abdominal or pelvic pain
• Needing to pass urine more urgently or more frequently
Thursday, April 24, 2014
BRCA 1 Mutations: Treat Earlier
This latest important research shown in Fred Hutchinson Cancer Research Center News
http://www.fhcrc.org/en/news/center-news/2014/02/ovary-removal-by-age-35-to-reduce-cancer-risk-.html
Ovary removal by age 35 to reduce cancer risk?
Fred Hutch researchers weigh in on new recommendation that women with BRCA1 gene mutation have ovaries removed by age 35
- Photo by Science Photo Library / via AP images
The international team of researchers who followed nearly 6,000 women with BRCA mutations for an average of 5.6 years found that preventive removal of the ovaries, called oophorectomy, reduced the risk of ovarian cancer by 80 percent and the risk of death from any cause by 77 percent, according to the study published in the Journal of Clinical Oncology.
The study also found that women with the BRCA1 mutation were at a much greater risk of ovarian cancer than those with BRCA2 mutations.
“To me, waiting to have oophorectomy until after 35 is too much of a chance to take,” said Dr. Steven Narod, a professor of medicine at the University of Toronto and the study’s lead author. “These data are so striking that we believe prophylactic oophorectomy by age 35 should become a universal standard for women with BRCA1 mutations. Women with BRCA2 mutations, on the other hand, can safely delay surgery until their 40s, since their ovarian cancer risk is not as strong.”
Narod and his colleagues followed 5,787 women with the mutations, some for as long as 16 years. At the study’s outset, 2,123 women had already had an oophorectomy. Another 1,390 received the surgery during the course of the study, while 2,274 eschewed the surgery.
For women carrying the BRCA1 gene, the researchers estimated that delaying surgery until age 40 raised the risk of being diagnosed with ovarian cancer to 4 percent, while waiting till age 50 hiked that risk to 14.2 percent. This is compared to the rate among those who had an oophorectomy before age 40: 1.5 percent.
Experts agreed that the new study underscores the importance of early oophorectomy in women carrying the BRCA1 mutation.
“Until now, our recommendations for prevention of ovarian cancer have been identical for women with BRCA1 and BRCA2 mutations. This study changes that,” said Dr. Elizabeth Swisher, medical director of the Breast and Ovarian Cancer Prevention Program at Seattle Cancer Care Alliance and a professor in the department of obstetrics and gynecology at the University of Washington. “Women with BRCA1 mutations are at higher risk of ovarian cancer in their late 30s while women with BRCA2 mutations have no appreciable risk until after age 40. Therefore, women with BRCA1 mutations should ideally have their ovaries and fallopian tubes removed by the age of 35, while women with BRCA2 mutations can safely wait until age 40.”
There are, of course, downsides to having the ovaries removed. What women find most troubling is the immediate end of childbearing and the early entrance into menopause.
“There are both medical and quality of life downsides from the early menopause,” Swisher said. “I would recommend that women take estrogen unless they have previously had breast cancer.”
‘It’s a very personal decision’
The decision is one that each individual woman has to make with her doctor, said Dr. Larissa Korde, director of the Prevention Center at Fred Hutchinson Cancer Research Center.
“Women considering this have to look at a couple of different things: the risk of ovarian cancer and how an oophorectomy affects breast cancer risk versus how early menopause affects general health,” Korde said. “You have to consider the side effects [of early menopause] like hot flashes and vaginal dryness, and the effects on bone health and cardiovascular health.”
Earlier oophorectomy might allow some women to keep their breasts.
“If you have your ovaries out there’s a significant protective effect against breast cancer,” Korde said. “If women have not had breast cancer and their ovaries have been removed we often prescribe short term hormone replacement therapy and breast cancer screening. That’s an option some women opt for.”
Ultimately Korde said, “it’s a very personal decision. Women have to deal with what their feelings are, what they’re afraid of, what risks they’re willing to take on and what side effects they’re willing to live with.”
Read more:
To screen or not to screen? Cutting through mammography confusion
Sunday, April 13, 2014
PALLIATIVE CARE: An Introduction
As a person with cancer it is important to do all we can not only to learn about our cancer and treatments, but learn about resources that can assist us with our suffering. Palliative care can be an essential ingredient in the complex and everchanging recipe for our care.
My mom had the blessing of speaking with two palliative care nurses a week or so before she died. They gave her attention, validated her integrity and spoke with and to her as a whole person. They assured her that they were THERE to ease her suffering, and she was so happy about that.
Indirectly, I believe that mom's primary doctors were offering palliative treatments, but without defining it as such, her treatments were not coordinated. This happens far too often.
Mom suffered great abdominal pain, nausea, fatigue and emotional exhaustion from grappling with the ups and downs from multiple hospitalizations and an overall downward trend in her quality of life. Plus a critical element, family education, really never happened.
Had palliative care been introduced sooner, she may have had an overall better quality of life. Her family would have had support in supporting her better in the way mom wanted. We all did the best we could, and every life experience is a lesson. Mom had type 1 diabetes with all the trimmings, she suffered greatly. In her suffering she still managed to shine a beautiful smile, joyful laugh or deep regard for her loved ones.
Cancer patients greatly benefit from palliative care. This type of program has the purpose of enhancing quality of life by managing pain, stress and any other major issue inhibiting our ability to live as best we can with our illness. Please go to the lnk below to learn more about this treatment plan and to see if you or a loved one could benefit from this type of care.
Peace and Blessings
Wednesday, March 05, 2014
Mom's Obituary I LOVE YOU MOM!
Monday, February 24, 2014
Feng Shui
Mom in one of her gardens. |
Monday, February 17, 2014
A Kansas Hurricane
Monday, January 27, 2014
"A Healing Place" by Colette Montez
During Christmas break I took my retreat to a town that is close enough to be easily doable, but far enough away to feel like I’ve gotten away. It involves a drive, a Washington state ferry ride and another drive, to transport me to a place that I feel heals me.
There was the beach, desolate and solitary in the coldness of December. Sand wet from the misty rain, treasures of sea glass and shells and pebbles brought in by the tide. Herons, gulls and crows constitute the wild life that I see, my eyes scanning the water for any porpoise with purpose which on this trip I do not find. I watch a ferry in the distance coming in to the dock of the town.
I think happy thoughts, feeling well to be able to walk the beach to a lighthouse, remembering past trips, immersing myself in a fantastically interesting sky. God’s light streaming through the clouds, fat, white, shades of gray cotton balls that are scudding across the sky with the wind.
This is my getaway trip, my retreat where I sometimes go. I journey to this healing place sometimes alone, sometimes with family. There are no rules to any of it except one. I don’t think of cancer. I act like I will live until I’m 90. I go into town and shop. I buy myself something nice, never worrying or considering about whether I can use it enough before I die. There is even a bead shop there and this particular trip I pick up a strand of chocolate freshwater pearls that I will add to wire wrapped necklace I’ve already created with white pearls. The chocolate and the white will add more visual interest together then alone.
Eating good meals at the restaurants I enjoy brings to my mind how grateful I am to be so well at this time. I enjoy and savor each bite. One can really appreciate eating after having had meals through an IV drip!
After a night in my favorite hotel, I awaken to screams and indignant screeches of the seagulls. I know instantly where I am and it completes the auditory segment of the picture of a seaport town.
It’s important to have a healing place that you can go to. So much of this illness is emotional and mental in nature. We have Doctors who can address our physical discomforts and illness, but how many of us have someone or somewhere to go with the emotional turmoil that cancer creates? Find a place. Go there for a healthy distraction.
When I was first diagnosed, I'd visit this town and wonder if I’d be back the following year. Now, four and half years from diagnosis, I go to this place on the Olympic Peninsula and never worry if I will be back. I just plan on being back and so far that has worked just fine! Someday will be my last trip, but I don’t concern myself which trip that will be. I just revel how grateful I am to be able to come back here each time I need to. Create memories, see the natural world and leave my treatments and procedures for 48 or 72 hours.
My current photo is of Terry, my Norwich terrier, at our healing place. We’re at the beach where she can walk on sand and spy on the gulls that remain frustratingly out of her reach due to her leash! The first time I brought her she ran to the water, took one drink, tensed her face and never did that again! She was a rescue dog off the streets of Los Angeles and captive on death row in a kill shelter when the rescue group saved her. I can only assume Terry had never seen such a body of water, or even been on a beach before.
Now as the photo shows, Terry is sitting on the driftwood, reflective, calm, content, churning her doggie thoughts over and you come to figure that maybe even the dog needs a healing place where they can just “be” in the moment with all nature’s beauty at paw.
I fervently hope that all of you have a healing place, be it far or near, that you can get a much needed mental break from all your troubles. Renewed, refreshed and once again hopeful.
Sunday, January 26, 2014
Old Time Staycation Surprise Letdown
http://www.policymic.com/articles/79887/the-nfl-pulls-in-10-billion-each-year-all-of-it-tax-free
http://www.guidestar.org/FinDocuments/2010/131/922/2010-131922622-0706081b-9O.pdf
When I was a kid we went on one vacation as a family. One summer day at the spur of the moment it was decided that all of us hop in the Ford Pinto Wagon and take a weekend road trip to Dillon, Colorado. Wow we were jazzed! We just did not have the resources to "travel" as a family and when this opportunity arrived, we were pretty happy.
I remember what we were wearing! I remember pulling off to dip our toes in the lake, inhaling the fresh pine air and staring in awe up into the clear blue sky. The trip ended abruptly the next day because dad had a toothache. There ya go.
So instead of vacations, we had what people call nowadays "staycations". I can think of just a handful to include Thanksgiving, Christmas Eve and Christmas Day, baseball games, maybe a summer holiday and the Bronco games. The Bronco games provided us with many fun loving memories and laughter. Our house was Broncos central. Aunts and uncles, grandparents, cousins and friends would come over, we would enjoy great food, and for the next three hours think of nothing else. I loved being a kid during those times. I loved watching the adults and listening to them talk about the game, razz each other, tell jokes and laugh. I loved helping mom with the food if she wanted it. I have written about this before I know, but it is true, the Bronco games were our primary source of family entertainment.
It was so much fun to cheer and holler. We even had season tickets. Two seats. Mom, myself, sister and brother would rotate games to go with dad. We always parked at grandma's house and walked with the rest of the rowdies to Mile High Stadium.
As an adult I don't really care about football, just the Bronco games. Otherwise I don't really watch sports. As a cancer patient I have found that watching my Broncos really makes me forget about cancer, chemo and worries for that three hours of time. Of course it's not the same now, no big family get together, just me really, but still I love my Broncos.
So now to get to the reason why this blogger who writes about ovarian cancer is blogging about football. Well, I am late to the game and did not know that the NFL is a non-profit organization.
For obvious reasons this is just wrong on every level but I want to talk about my teeny little gripe that does effect my quality of life.
I do not have cable TV. I have Roku. If I want to watch my Broncos play a regular game, I would have to pay to subscribe to the NFL to watch live streaming Bronco games. What??? Only during the playoffs have I been able to actually watch a game on my Ipad. The few livestream news channels on Roku aren't allowed to show the game streaming even if it is free to their local viewers. This is a racket. It actually upsets me.
I need my little joys, my little breaks. Everybody needs their little happys. The family memories of cheering for the Broncos make me happy and darnit I just want to watch the game and enjoy fond memories.
So now that It has been revealed to me that the NFL is a "non-profit" I wonder if it is legal for them to charge any fees to watch their games.
I am just disappointed all around. They pay no taxes. That makes me pretty mad. I wonder what kinds of needed programs could be saved if they paid their fair share?
I want to know why the Non-profit NFL requires me to pay a fee to subscribe to their services to watch the Broncos. I need my little staycation. I realize this is selfish of me but I want a chance to cheer and root on my team, no matter where I live, for free. Edit: I am grateful for life and all God brings to me, please remember that as I vent a bit about this issue. Peace.
Pass this around if you agree.
This is part of my "Little Happys" series for those of us in grief, dealing with cancer or any other chronic or acute illness.
Go Broncos!
Love,
Denise
Sunday, January 19, 2014
I just saw it on CNN.com: 'He's going to be better than he was before'
One of the most traumatic nights of my life happened not long ago. Someone I love more than anyone else on earth passed away. I am sorting through memories of those teeny tiny increments of time. It is like trying to catch snowflakes with tweezers. Then every once in awhile something reinforces the strangeness of that night, the intention that may or may not have been.
I wonder how I would have reacted if I had known about the information in this video at the time we found out there was no hope for mom. I am certain I would have asked the doctors for fish oil. I would have fought tooth and nail to at least give it another day, one more chance.
This article is very inspiring. It makes me want to DO something. Sometimes I feel like I am swinging at air. Then after a bit I relax into peace. Up. Down. Up. Down.
I also have a thousand thoughts about this article, but I will just leave one. In the case of this boy he had very strong-willed parents who were searching for anything so that their son could be saved. The right information was presented at the right time, not a coincidence. It is our fortune to learn more about this treatment.
I pray for those who are alone in the hospital that have no voice, no cheerleader, no individual who can stay with them while receiving treatment. We all need an extra pair of eyes and ears if we are in the hospital.
I applaud this family, the writer, Dr. Gupta, and the other doctors for revealing this important information. It adds another layer of help and hope for those with brain damage.
Peace and love,
Denise
Wednesday, January 15, 2014
Tuesday, January 14, 2014
Love
I have a funny memory of mom being followed by one of grandpa's racing horses. She was laughing one of those panicky laughs while trying to keep away from him. He got out from inside the fence and was running up behind her along the long driveway. I think he liked mom's hair or thought she had carrots and apples. Anyway, it was pretty comical. Mom loved horses.
Sunday, January 05, 2014
Support Her
I am posting the link below, as I cannot copy it to my blog directly.
I am really fortunate in that my gyn oncologist has always placed my quality of life as her number one priority when it comes to my care. I currently have a counselor and my support network is open and listens to my needs. Cancer is complex, ovarian cancer is no exception. Adding cancer to your already complex life and to the lives of those around you brings about all kinds of opportunities for generosity, but also can bring about sadness and isolation.
If you have ovarian cancer and feel that you need more emotional support, you are not alone.
This article outlines areas of need and validates that supportive environments play a critical role in our quality of life. Not everyone gets the support they need, but personally I think it's not always because of lack of potential. Giving help and receiving help are sensitive issues in general. Caregivers and loved ones may not really know how to help and understanding cancer fatigue, for example, is almost impossible unless you know it yourself.
It is somewhat of a relief that this area of need is being studied as it relates to ovarian cancer. I hope to see more research and help in this area for all who are effected by ovarian cancer.
Peace and blessings to you!
http://onlinelibrary.wiley.com/doi/10.1002/pon.3322/abstract
Tuesday, December 31, 2013
Happy New Year 2014
http://vatican.com/news/frame.aspx?url=http://www.catholicnews.com/data/stories/cns/1305423.htm
Monday, December 23, 2013
Missing Our Beloved At Christmas
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
~author unknown
Published by TCFAtlanta.Org