Survey Respondents Needed

Detailed Ovarian Cancer survey respondents needed!

Please help those who help.  The Ovarian Cancer National Alliance, in conjunction with Ovarian Cancer Australia and the Australia New Zealand Gynecological Oncology Group (ANZGOG), are asking women who were diagnosed with ovarian cancer at least six months ago, and received treatment, to complete a confidential survey about concerns they faced post-treatment.

This is important in order to assist in developing better treatments and interventions in the future.

The following survey should take approximately 20-30 minutes and asks about the treatment you received and the impact it had on your quality of life. All answers are confidential.

https://www.surveys.unsw.edu.au/f/158683/1409/

Thank you for your time and contribution.

PS....  I am coming up on my 5 year survival date on July 29, 2014.  I am so grateful, so humbled.

My Avastin treatment continues to chip away at my remaining tumors.   My rheumatoid arthritis is out of control, but that will hopefully get remedied soon.  Sleep ..... sleep....sleep.  Ha!

Enjoying the light and love from family and friends.  Thanking God for each new day.

Peace and blessings,

Denise Archuleta
aka  #servivorgirl

Fight To The Death "Right To Try" laws

.....as they say.  It is a fight to the death for all of us.  No matter your situation, if your life is in jeopardy you fight to the death.

I am relieved to see that Colorado has just passed legislation that allows terminal patients more options to extend their life on earth.  I cannot imagine the heart break knowing that a medication exists that could save the life of the one you love, but they can't have it.

The important thing for each of us to consider is to what length do we want others to go to in order to keep us alive.  Having an Advance Directive is important, especially if you have an illness like cancer.   It is important that your loved ones know your wishes.   It is not easy to think about, let alone write out.

http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289 (link to information on advance directives)

Our mom, God rest her soul, took time to write it out and to articulate her wishes when it came to heroic measures.  Although she did not have cancer,  the only thing that kept us grounded during her final hours was knowing that her wishes were honored.  We are never prepared for these tragic situations. Never.

We tend to think that logic will rule, but desperation and pain take over. Sometimes the only thing that keeps loved ones on a single page is an Advance Directive. We beg God, we beg doctors, we scour the internet looking for answers that will save our loved ones.  We pray for miracles. 

Miracles may now come for some in Colorado and people can make it known that they want experimental drugs as a last resort.

Here is a link to an article about the Colorado legislation from The Huffington Post:

Right To Try    Please follow to read the article in full.

I think the naysayers have never really needed to fight tooth and nail for their own lives.  One said this jeopardizes the approval process and delays release of those experimental medications to the masses.  Well, that issue, if it is real, can be fixed because the FDA can make adjustments for this.  Paperwork, red tape, money and more money..............none of those concerns has a real pulse.

As long as an informed patient or legal guardian with a durable medical power of attorney fully understands all the risks, are willing to take the risks and absolve the drug manufacturer of liability, the patient should get their last chance for life. 

We want to swim, not sink.  When someone you love is drowning you want to throw them a lifeline.

Thank you Governor John Hickenlooper of Colorado!

Thank you for showing true compassion!

I pray that all states pass this kind of legislation..

It gives us hope.

Peace and Blessings,

Denise
aka "servivorgirl"

Link To Medical Directives by State

CANTALOUPE

I am thinking today about cantaloupes.  What?  Yes, the cantaloupe.  I love this time of year.  I love the sweet, fresh, full flavor of the cantaloupe.  Why is this important?

Several years ago I was having one heck of a time with eating.  Ever since my optimal debulking and chemotherapy treatments my digestive system has been out of whack.  This is very common for women with ovarian cancer and can cause serious and potentially life threatening conditions related to blockages.  It is very important to get our digestive health in order.

I went to a Naturopathic Doctor, on the recommendation of the survivorship program at the SCCA.  It was one of the best referrals ever made.  When it comes to digestive health, seeking out natural remedies in addition to the reliable standards (Miralax) can add quite a bit of positivity to our lives.

For some perspective:  Many chemotherapy agents cause severe nausea and abdominal pain.   The irony of taking antinausea meds is that they cause major constipation that causes more nausea. Pain medications cause constipation that causes pain in the abdomen.  

Someday this will not be the case, but it rings true for now and when on harsh chemotherapy, the battle ensues.   Unfortunately many of us never fully regain optimum digestive motility.  Over time though, we adapt and create a new way of eating and living.

My N.D. recommended taking digestive enzymes and another supplement with slippery elm.  He also recommended that I eat 3 cups of cantaloupe per day.  His suggestions truly helped to increase my motility and decrease my agony.   It was a little on the expensive side to eat this much good cantaloupe, but well worth the cost.  If only we had a garden.

Eventually I was able to eat a raw salad again, thanks to his advice.  I am very grateful for this recommendation and for the ability to eat raw vegetables.  

I am posting a few links about cantaloupe.  They include nutrition and enzymatic benefits.  You will also see important information about how to purchase, store, clean and slice them.  

***Extra caution must be taken when handling a cantaloupe, especially for those of us with a compromised immune system.***

I hope you enjoy the benefits of cantaloupe as much as I did.  Cantaloupe can be a very good fruit for people with cancer, eye disorders and other digestive disorders because it is easy to digest and filled with lots of nutrition.  

One note from the site "God's Healing Plants"

EAT THEM ALONE

"Melons are very easy to digest. This is due to their high liquid content – they are all 90% or more water. So melons digest almost immediately. They require virtually no digestive action by the stomach and pass through the digestive system very quickly; however, this can only happen if the stomach is empty. If melon is eaten with other foods that require more complex digestive action in the stomach, it can no longer pass through quickly and gets “stuck”. Even though the melon is already broken down sufficiently to pass quickly through the stomach, in effect, it gets trapped there as it must wait for the other foods to be properly digested. As the melon sits and waits in the stomach, it begins to ferment, leading to bloating, gas and other digestive issues.

Due to this fact, it is important to remember the following rule for all types of melons in order to promote healthy digestion: “Eat them alone or leave them alone.”

God's Healing Plants 

World's Healthiest Foods 

Enjoy!

Peace and Blessings

Denise Archuleta

aka "Servivorgirl"

Are Your Health Concerns Second Class?

DO YOU HAVE A BLOG OR ONLINE CAMPAIGN THAT COULD SAVE A LIFE?

If so, your ability to reach people will be severely hampered because a few companies want to control  the speed of the internet.

I watched this and now I really see how dangerous this is for everyone.  We must retain net neutrality.

http://front.moveon.org/what-happens-when-cable-companies-try-to-rip-us-off/

I try to avoid politics but this effects everyone.

Help preserve my blog and your right to equal access to information on the internet.

Teal hugs,
Denise Archuleta
#servivorgirl

Be Confident

Communicating with a medical professional about intimate details, especially anything resting within our torso below the belly button. Honestly speaking, who wants to talk about potentially embarassing issues?  Your doctor has heard it all and seen more than you pry want to know about. Challenging them by asking for help using colorful details to describe your problems may work in your favor. Who knows? I have learned, and many have agreed, that journaling our health issues helps us to share information with certainty. Looking back, it is invaluable information that could have helped my doctors better understand what my body was fighting.

Our primary job is to create the dots and let the professionals connect them. We don't always know what we are looking for, but we always know what we feel inside our bodies.  That and keeping ourselves educated can go a long way towards longevity and a better quality of life.

This post is designed to provide an overview of ovarian cancer and is a good one to share with your female friends.  Ovarian cancer is complicated, almost never on anyone's radar and does have symptoms that should drive an inquisitive and compassionate doctor to search for answers.

Over the past 3 years I have seen a rise in the number of people dedicated to raising awareness of the most common symptoms of ovarian cancer.  The most effective awareness campaign is one that reaches patients and the medical community.  

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.  

Ask your PCP to tell you everything they know about ovarian cancer.  

We desperately need a true screening test and a CURE!

Please read this very informative article:

http://documents.cancer.org/acs/groups/cid/documents/webcontent/003130-pdf.pdf

WORLD OVARIAN CANCER DAY MAY 8th

Please share this information with your friends and family.  Ovarian cancer sneeks up on women, striking often times deadly blows, but we can do something to help avert the trauma.

First, pay attention to the following:

Symptoms of ovarian cancer can often be confused with other less serious conditions such as gastrointestinal disorders. Symptoms include:

• Increased abdominal size / persistent bloating (not bloating that comes and goes)
• Difficulty eating/feeling full quickly
• Abdominal or pelvic pain
• Needing to pass urine more urgently or more frequently

Please visit the World Ovarian Cancer Day site for more information:

http://ovariancancerday.org/

More to come.

Peace and Blessings from Denise Archuleta

aka "servivorgirl"

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

Feb. 26, 2014

By Linda Carroll

Women who have a mutation of the BRCA1 gene can protect against breast cancer (shown) and ovarian cancer by having their ovaries removed by age 35, a new study has shown.

Photo by Science Photo Library / via AP images

Women who’ve inherited mutations of the BRCA gene could dramatically reduce their risk of breast and ovarian cancer by having their ovaries removed by age 35, a new study suggests.
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

PALLIATIVE CARE: An Introduction

I have not forgotten my ovarian sisters or their families.  Our family has been grieving the loss of mom.  My life has been enmeshed with my mom's life for many years, and each moment of joy and pain is equally treasured.  We honored her life last weekend in Colorado, with family and friends from all around the region.  My sweet Aunt said that she felt uplifted at the end. My sister worked so hard on the arrangements, thank you sis.  We chose to share mom's joy, her smiles, elegance and cherished life events.  Her suffering made us stronger.  Now she rests in peace, with God.

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.

I had asked several years back if the hospital offered palliative care, and at that time they did not.  This service came to her too late, but it is not yet offered as a standard service.  It is still relatively new and if you think you need it, please ask about it.

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.  

When an individual is deemed to have chronic pain and suffering from a serious illness, the caregivers and patient need to be on the same page.  To leave the education up to the patient places an unfair burden on them.  The patient may not want to appear needy and the palliative care team knows HOW to educate without undermining a patient's dignity.  How I wish mom had received this help earlier....

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

http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/hsgrp-hospice/hospice-vs-palliative-care-article.aspxhttp://www.getpalliativecare.org/whatis/

Mom's Obituary I LOVE YOU MOM!

I am so thankful that over the past few years a few of you have taken time to know our mom.  I miss her so much.  I never knew a heart could ache like this.  

I am pasting a link to her obituary.  One day I will see her again.

  Mom, I love you forever.  God rest your sweet soul.

Painting The Heavens

My aunt and sister did such a beautiful job of writing up mom's story, love you!

Feng Shui

I awoke today (Sunday) at 8pm.  I had slept 18 hours, basically straight through except to feed sweet Marilyn and get a glass of water. 

So contrary to the burst of energy felt a few days ago when a Fung Shui master came to my humble abode and assisted me with arranging my space to create the optimum living space for me.  One that facilitates healing, comfort, spiritual growth, family and creativity.  After she left, I felt much more capable of finishing my move.

I found the rather reasonable fee well worth it, for she saved me from making several purchases for furniture that I really don't need.  Yay.

My "stuckness" today is that I still need a piece for the TV, a TV and a pretty storage area to hold the unfinished projects from mom, photos, and my project stuff.  Plus I work part time from home and want my desk area to generate creative positive energy.  I need to finish the project, sigh.  After I am done writing, I will play with Marilyn and order my stuff.  Yes I will!

I recently moved from a very small one bedroom quiet apartment to a two bedroom in the same building.  I am totally and completely exhausted from moving mom's things, my things and now needing to finish setting up my things.  I am tired of things, to be honest.  Most definitely tired of moving.  This last move will either be number 29 or 30 for me.

But mom's things are beautiful, her pottery, art, photos, furniture and other pieces bring me comfort.  I want to honor her memory properly and display them with care.  No clutter.  No tacky arrangements.

The consultant surprised me.  She was bright, cheery, well trained, almost two decades, and just knew what to do.  I let her know I was still in treatment for ovarian cancer recurrence, mom had just passed away and that I needed help to create the ideal space.  We chatted, she was very comfortable to talk with.  Then she rolled up her sleeves and started moving things around. 

I had mom's painting and prints all lined up along with nicely framed family photos.  We spent lots of time planning the placement of each piece to be in harmony with the energy of the baqua, or life layout.

It was amazing to see how she placed each piece just perfectly and suddenly the area radiates, the piece is more vibrant and you want to be in that space.

I need a handyman to help me hang prints.  I need to still buy the storage units, media table and TV.  After that it's a matter of ongoing shredding and setting up the pottery for display.  I want to get to work on the photos project. 

I am also chronically fatigued, behind on tasks related to moving, etc.  I just am overwhelmed.  When my apartment is finished, this space will be a part of my healing as opposed to just a place to stay and pay rent.

I have always been very sensitive to my surroundings.  My mom used to sort of complain that I was too particular.  I separated my food.  Can't stand to be in dirty places or dark spaces.  I would make a terrible archeologist for example.

My mom is allowing me an opportunity to fully create this space and I am excited. 

Below I am pasting a link about cancer fatigue and also a link to Cynthia Chomos.  She really made it easier to blend my mom's belongings with my few little things into an arrangement that honors the work she did and inspires me to thrive.

I am weighted with worry because I am adding Enbrel to my arthritis treatment plan.  Basically Enbrel works by blocking Tumor Necrosis Factor to fight inflammation.  My Avastin fights to cut off blood supply to my tumors.  So Enbrel could make it easier for my tumors to flourish.  I have run out of options.  Part of my terrible fatigue could be from the bad arthritic flares that started  back in September.  I need to get my arthritis under control, and the risk to my cancer is small but there.  I just would be devastated if something went wrong.  I am tired of crying when I have to open a difficult container.  Ha

So anything we can do to create a healthy living space will help us feel better.  I have always operated that way.  Please take a moment to look at these links.  Cynthia was the exact person I needed to get me started here in this new place. 

................................................

Feng Shui

http://www.cynthiachomos.com/index.htm

Cancer Fatigue

http://www.cancer.gov/cancertopics/pdq/supportivecare/fatigue/Patient/page2

Mom in one of her gardens.