CDC Symptom Diary Card

Wednesday, June 18, 2014

The Eyes Have It

I was riding on top of the double decker bus, the night sky was void of stars and moon.  I had been standing on my seat when the driver took a sharp turn. I was jolted back into my seat just as a bright flash shot like lightening across the sky.  

When we pulled into the camp we were met with women and children running and screaming.  Something had crashed into the stadium fields just down the road.

I was escorted off the bus to the main lodge where I took my post as hostess.  

During this dream I am asked to decorate the main lounge with a stuffed Christmas Tree.  Wierd. I see my mom's father and he is assigned to find out what has crashed in the stadium.  He smiles gently, gives me a hug, grabs my hand then slowly fades into the background. I love you Grandpa!

Next I find myself kneeling next to another very dear relative who has been brought inside for cover.  She is out of breath, restless but somewhat elated.  I am nervous because I do not know what to do.   One of the workers assures me that I am the right person to help because she trusts me.

I am terrified because she has two irises in each eye.  She says she can see me clearly.  She repeats over and over, "I stopped the medication and everything is clear now".  She just smiles and smiles, looking wondrous and happy.

Her eyes haunt me right now.  I want to know what that means...... two irises in each eye.  

Then I wake up.  It is just after noon.  I am supposed to get my Avastin at 1:00 pm.  Late again.  Thankfully they will take me later on.   I have had the worst time with being so deep in sleep/nightmares, not able to wake up.

:-)

So to lighten the mood I am sharing a video from my friend Joe Hendricks.  He is an expert hiker. He brings us to a peaceful place apart from daily troubles.

I encourage you to visit his You Tube site.  Joe lost his sweet Heidi to breast cancer.  He is a true inspiration for me.  Thank you Joe for bringing joy.

I am home from a treatment, relaxing here with my kit kat Marilyn. Counting my blessings and praying for those in harms way.

VIDEO LINK: A Hike With Joe

http://youtu.be/cLcMeYEo6Ek

Peace and Blessings to all

Denise
aka #servivorgirl

Friday, June 13, 2014

More Research for BRCA Mutation Carriers



The latest research released by Penn Medicine further supports that much consideration needs to be done when contemplating risk reducing surgery to prevent ovarian cancer.  This information is geared towards women who have a mutation of BRCA1 or BRCA2. All women can benefit from these studies.

I am linking this article along with another article involving the relationship between the fallopian tube and ovarian cancer as well. The two articles provide an interesting perspective on how preventative surgery may be managed.  There is strong hope that removing only the fallopian tubes instead of ovaries AND fallopian tubes may be adequate protection from ovarian cancer.

In my personal opinion, had I known about my BRCA1 mutation at a younger age, and if we had this research available at that time, I may have considered just removing just my fallopian tubes in order to reduce the risk of ovarian cancer.  The premature removal of our ovaries causes dramatic changes and if we can help to avert ovarian cancer with fewer negative side effects, more women would agree to undergo risk reducing surgery.

It is exciting to see that researchers are discovering more options to help prevent ovarian cancer.

Here is a link to a proof of concept study at MD Anderson on using salpingectomy with delayed oophorectomy:





http://clinicaltrials.gov/ct2/show/NCT01907789

If you are positive for one of the mutations, and have not had risk reducing surgery, please review these articles. They are meaty, but worth your time.

Thank you to my cousin for sending me this very important information from Penn Medicine!

http://www.uphs.upenn.edu/news/News_Releases/2014/05/rrso/

http://www.ajog.org/article/S0002-9378(13)00382-7/pdf

Peace and Blessings!

Denise
aka #servivorgirl

http://clinicaltrials.gov/ct2/show/NCT01907789

Wednesday, June 11, 2014

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

Tuesday, May 20, 2014

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

Wednesday, May 14, 2014

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.”



Enjoy!

Peace and Blessings

Denise Archuleta
aka "Servivorgirl"