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/