Happy Thanksgiving to you and yours, Love Servivorgirl

Prayer to St. Raphael | St. Raphael Prayer

Prayer to St. Raphael | St. Raphael Prayer

I say this for all of you.  Today was a day that crushed me.  A better light will shine tomorrow.

An Amazing Story Will Soon Be Told

http://youtu.be/aZV53SuPMPU

http://youtu.be/GYMLMj-SibU

It's Always Nap Time: Cancer Related Fatigue

The days pass by in a blur for me.  I am on avastin every three weeks, sleep excessively and am in more pain in my joints now.  The fatigue is what seems to now be causing me the most trouble functioning on a day to day basis.  It is ALL worth it though to keep my ovarian cancer under control.

I am officially "unreliable" if any plan is made that requires my presence before noon.  I have actually missed several doctor appointments, missed following through to go with mom here and there.  Spent much of my sping trip to Colorado sleeping.   I find myself sitting and closing my eyes, no matter how many hours I sleep.

To make matters worse, my schedule is way off whack.  If I lived on the East coast, I would be praised as an early riser.  If I lived in Hawaii my timing would be perfect to arise around 9 am.  Alas, I live in Seattle, the gloomy days are closely falling upon us, and I awake any time between 11 am and 2 pm.

Because my clock is off, I have a hard time falling asleep before 2 am, I work part time hours into the late evening and just cannot unwind fast enough.  I need 12 or more hours of sleep per day and usually sleep through most of Sunday.

My trusted mental health professional and I are working on implementing resources to increase my energy, improve my sleep and cope with the heavy stresses in my life.  I can't talk about it all, but somewhere along the line I made it a mission to do all I can to help others live a happy life.  Nobody should leave this earth sad or deprived.  If there is even a tiny thing I can do, I want to do it.  I am however learning that my good intentions may be applied in the wrong places and at the wrong times.
  

In treatment we are now using the terminology "cancer related fatigue".  This is another one of those things that most people believe goes away about 6 months after treatment stops.  Not always true.  People heal at their own pace and sometimes this healing time does not match the reality of day to day demands.  Getting emotional support during these times is critically needed to find bridges and resources to fill in the gaps

In 2009, starting  my first chemotherapy round with multiple toxic agents (carboplatin, taxol and cisplatin) I totally tanked and was in a deep brain fog, was lost and scared all the time.  I had a very high level of anxiety, and multiple physical issues of abdominal pain, nausea, hot flashes, shortness of breath etc, that added to the fatigue from being poisoned and having cancer.

I regained some strength during my period of NED, but retained severe abdominal pain, severe sweating, nausea and fatigue.  My overall cognition has improved.  Eventually it came to be that I have some sort of panic disorder and the medications I take have helped with that, thankfully.

Being back on chemotherapy now for almost two years for my recurrence has compounded the fatigue. I have been counselled with great compassion that many women live long lives on chemotherapy.  I feel alright with that now.  I did not think I would, but as long as I can tolerate the side effects, I am all in.

During the second time around, with carboplatin desensitization we were able basically keep more tumors from developing, but the existing tumors were still growing.  I think there are around 8, very small, but there nontheless.  With Doxil we were able to stabilize the growth.  I was on Doxil for approximately a year.  Now on Avastin, we are hoping to shrink the tumors by cutting off the blood supply that feeds them.

I am seeing some improvement in my CA125, but am not counting too much on the number, just paying attention to the trend. 

I have treatment tomorrow, and next month I am due for another CT.  

We have a lot going on in our family, just like every other family that is not independently wealthy.  Little time is taken to cross things off the bucket list, so to speak.  We are getting there.  I think all of us could use a real vacation!

To be honest, I have no bucket list yet.  There are things I want to do, but my focus is family and maintaining self sustainability for as long as possible.

The one constant in my life is daily prayer.  When I awake and when I get into bed, I pray.  I thank God for each new breath and pray that others ask for Him to help them. 

Please click on the link below for some information about cancer fatigue.

Cancer Related Fatigue from Cancer Research UK.org

Love to you and yours,

Denise

TED Talks Brave Neuro World

I found this series on "TED Talks" this evening.  I was looking for something interesting, not related to politics or our healthcare system.  Our government is now back in business and the Affordable Care Act remains law.  Finally can rest.

After watching this episode of "TED Talks", I realized that she is right, we need to spend much more time engaged using our right hemispheres.  

Please watch to learn why and also learn some fascinating things about the experience of a stroke.

Peace and Love,

Denise

http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html

Why you should listen to her:One morning, a blood vessel in Jill Bolte Taylor's brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness ...

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the "Singin' Scientist."

Affordable Care Act Resources VIDEO

http://www.whitehouse.gov/share/what-obamacare-means-you 

The link above takes you to a really easy to watch and basic video that helps us to understand how this works.  Worth your time.

The Affordable Care Act - also known as Obamacare - means better coverage for those who already have health insurance, and more options for those who don’t, including a new way to shop for affordable, high-quality coverage.

http://www.cancerinsurancechecklist.org/resources/

http://www.ovariancancer.org/health-insurance/

https://www.healthcare.gov/     (I know it has been jammed, but don't give  up)

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Here is a copy of resources from The White House

Myths and Facts  Link for you

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State-by-State Monthly Marketplace Premiums

A new report shows that the Affordable Care Act will deliver on its promise to make health insurance more affordable and accessible for Americans who need it. Download the full report

The report, released by the Department of Health and Human Services (HHS) finds that in state after state, affordable options will be available through the Health Insurance Marketplace in 2014. Nearly all eligible uninsured Americans (about 95%) live in states with average premiums below earlier projections. And nearly all consumers (about 95%) will have a choice of health insurance companies,each of which offers a number of different plans.

The Marketplace will be run in partnership with States or fully by the HHS in 36 states. In these states, on average, consumers will have a choice of 53 health plans (bronze, silver, gold, and platinum plans), and young adults will have the additional option of low-cost catastrophic or youth plans.

Use the map below to explore a summary of the choices and premiums expected in those 36 states. Final, complete information about all the plans in each state Marketplace will be available via HealthCare.gov on October 1.

Get Started in the Marketplace

Please share information with others.

Main Menu

Time For A Positive Post

I had a very good day at the Seattle Cancer Care Alliance.  I almost didn't get there because I slept until noon.   I fell right back asleep when I got back home from treatment around 6 pm and slept until 11pm.  I am hydrating and eating, feeling sleepy again.

I don't know, maybe when you get cancer you feel more of everything after a while.  I care deeply about the happiness of others.

I was filled with so much gratitude to have access to medical care today.  

I am praying for the government to be running now and for the Affordable Care Act to move forward.  We can always work to adjust problems, but lets get started.

Thank you God for my health team.

Love,

Denise

What the Tea Party Can Do With......

WARNING....foul language.  I NEVER write like this, but the madness must stop!  End the government shutdown now!  Official rant!

I am so exhausted and I cannot fall asleep.  I cannot understand why the stinking tea party thinks they rule the wold. We are maxed out guys....time to stop messing with our lives here.

Try at age 15 getting debilitating rheumatoid arthritis.  Garner all the go getem spirit you can, then lose your career anyway to arthritis.  Go without health insurance for 10 years, learn sales, try to start a company, fail...all the republican go get um things they say to do.....work hard play hard.....burn the midnight oil......and still not make it.    Then be ridiculed for not making it....wow that's the best ever.

Finally get a stable job with a great company, maintain it and have health insurance because of the job, and get deadly ovarian cancer. which by the way haunts me all the time.

I have paid into the system.  I am not a drag on society....And I don't earn my keep on the backs of others either.

I spend my life working......sleeping..........working.........sleeping.........as much time with family as I can since all I care about is family, my kitty, and the world......no vacation in Hawaaii....no savings or 401K to cash in.   hmmmmm,...anyway.....all while still on chemo.  You tea party people are cowards.  Battle the Affordable Care Act on it's own terms, stop holding innocent people hostage. You are like the guy who puts his kids in front of him when his malice is being called out.  

Republicans say I made my bed, so I must lay in it...no matter how hard I worked....close only counts in horse shoes.   At the end of the day...at least we should be able to agree that human beings deserve good affordable health care in the United States Of America!  

We have running water, electricity and the best pool of potential healthcare professionals in the world.

John Boehner can jam a cancer stick up his ass and light it for all I care.....not really,  any stick will do!

If I would of at least had healthcare those 10 years, maybe my arthritis would have faired better and I could have gotten regular checkups.  That would have gone a long way to maintaining better work as opposed to sales work.  Sales is not for me.    A sales rat tried to take advantage of my mom not too long ago.....

Why does the tea party want to hurt people with illness or who have disabilities?  

The Tea party is over, the flavor is gone.....lights out.  Time to end your drunken madness and sleep on it.  Maybe you will regain some compassion in the morning.

You guys are actually hurting people, stop it!  Government workers are putting their lives on the line and not getting paid like you are....they have to wait.  Enjoy your steak while they suffer. Enjoy your wine while moms in the WIC program cry at night because their babies have no formula.  

http://www.huffingtonpost.com/2013/10/08/north-carolina-wic-government-shutdown_n_4066047.html?utm_hp_ref=politics

No Formula for babies.....

"Parenthood" Season 4 : Kristina's Cancer And Other Important Stuff

Just on a side note, I love the Braverman family.  We all need our escape from reality and watching the show "Parenthood" is one of my favorite distractions.

I have been extremely tired, it just gets worse and worse.  When I am not working or with mom I turn on my Roku and catch up on old seasons of my favorite shows.  I need the distraction and who can resist the show "Parenthood".

Season 4 has Kristina Braverman battling breast cancer. For television, I think that they did a fair take on cancer.  It is not a real life documentary.  It did a good job, touched enough on important events and issues related to treatment, fears, complications of treatment and also how family adapts to these challenges.

I was glued to the tv.

Granted, this tv family is whole.  Kristina is not single and wants for nothing.  Those of us with cancer or any serious illness have a harder road if we are single.   

That being said, if you haven't watched season 4, please do so.   I really took advantage of the ability to remotely share with the character, and cry a little.  If you are a caregiver or friend of someone with cancer or any life changing, chronic illness, it can improve your empathy.

I never promote tv shows.  Not my style.  It was nice to have the marathon escape.  Chemo again on Tuesday......thank you God for the medical care.

http://www.nbc.com/parenthood/episode-guide/season-4/615416/

The little joys in life.....

Love,

Denise

Obama's ACA Opens Door For Significant Cancer Research Options

More Cancer Research Available Because of The Affordable Care Act

Insurers required to pay for routine care costs in clinical trials

mar
2013

By Elsie Puig for TCAJOB

"Patients from all over the world have gone to the Seattle Cancer Care Alliance to participate in clinical trials, especially those for bone marrow and stem cell transplants.

“The benefits of choosing to participate in a clinical trial can be significant,” said Forbes."

Quote from article in http://www.tricitiesbusinessnews.com/

I want to address the rumors being spread about how cancer patients will be left with fewer coverage options in 2014.  How do people say these things without actual evidence?  They say it because they don't like the healthcare bill and don't want all people to have access to quality care.

The above referenced article stated clearly  that because of the historic passing of the Affordable Care Act, not only will more patients have access to newly discovered treatments, research facilities will have a broader base of participants, which dramatically improves the quality and timeliness of much needed studies.

Insurance companies cannot deny coverage to patients who participate in a clinical trial.

I have opened up a response below from someone who claims that the number of options for quality cancer coverage is decreasing due to the Affordable Care Act.

Well, why would that be?  Hmmmm.  Maybe some insurance companies don't want to cover cancer, so they drop their contract with a facility that treats cancer patients.

So the insurance company is the entity responsible there I say.  Also, somewhere along the line big pharma really needs to lower their charges for medications, across the board.  It is ridiculous all around.

This is a really unique time for people with pre-existing conditions.  We will not let this go, ever, millions of us need the Affordable Care Act, even if it is not perfect.  The ACA has implemented within it Q&A, so it can adapt and change with demand.

I have already contacted the American Cancer Society and am looking forward to talking with someone on Monday.  Please also contact them if you have some concerns about these rumors.  http://www.cancer.org/

The woman that I spoke from the American Cancer Society was glad to help me.  

As a Nation, we are for the very first time in history on the cusp of adding another layer of real equality to services that treat our lives.

It will take time for some of the problems to work themselves out, that is truth.  The right thing to do is to give everyone a chance for quality health care, not just the few with good jobs who are already healthy.  

Imagining a nation with less illness, more health, better education and improved strength is exciting to me.  Gee, maybe we can reduce and better treat drug addiction and mental illness.  Wow, more cancer screenings to catch cancer earlier.  More cardiac screenings to avert heart attacks.  Fewer people with diabetes.  

The Affordable Care Act is not just about cancer.  It is about everyone's right to have healthcare.  Healthcare that they can afford.  Healthcare that is ongoing, not just in the emergency room.  

Peace and Blessings,

Denise

The Affordable Care Act: A Few Resources

I have seen a lot of mis-information in the news about fears for cancer patients and the Affordable Care Act.  Tea Party Republicans are holding the government hostage because they don't want people to be empowered with health and vitality, in my opinion.  It is historic and tragic.  I have always believed healthcare is a right.

I remember when I graduated from college and was shocked to learn that my health insurance was tied to my employer.  I have had rheumatoid arthritis since age 15.  When I lost that well paid career due to RA years later, I had no health insurance. That lasted for about 10 years.  Thank God I had good insurance to help pay for the optimal debulking surgery that diagnosed my cancer.  Had I not had insurance, I would have died.

We needed The Affordable Care Act years ago and it's time has come.  

The document is over 900 pages long.  It is understandable that people and agencies are overwhelmed.  Some of my ovarian sisters are scared about some of the outcome based strategies written into the new law that are designed to improve quality of care.  I think some doctors are also not sure what this will mean for some patients.  Some bad employers have  prematurely dropped spousal coverage as of October and these poor people are not able to be covered until January of 2014.

I myself need to shop for a new plan because my insurance decided to cut off my provider.  I want my doctor, I want my treatment team and facility so I will shop till I drop to keep them.

The big picture though is that millions of good people will have the ability to see a doctor.  The benefits in preventative care and screenings have been ramped up.  There will even be a program that will try home based delivery of care by physicians. Mostly, people with pre- existing conditions no longer need to live in fear.  

The ACA will take time to be perfected, but this is an historic opportunity for millions of people to have access to much needed screenings and care.

Here are a few resources that will help cancer patients have tools to better select insurance and also have access to treatment protocols that have been created.  

http://www.nccn.org/patients/about/resources/default.aspx

http://www.livestrong.org/

Love Denise

BRCA-and-Ovarian-Cancer--Risk--Prevention--Detection--and-Treatment-.html?soid=1102150261756&aid=Atrz4H0uRz0

http://myemail.constantcontact.com/Monday--Free-Educational-Webinar--BRCA-and-Ovarian-Cancer--Risk--Prevention--Detection--and-Treatment-.html?soid=1102150261756&aid=Atrz4H0uRz0

With National Ovarian Cancer And Gynecological Cancer Awareness month wrapping up and Breast Cancer Awareness Month beginning, it is a perfect time to learn more about genetic mutations.

I have a BRCA1 mutation, that was detected after my ovarian cancer debulking surgery.  As par for my course, the California insurance company denied the test.

The test was approved in Seattle.  Seattle is where my best care has ever been.

This testing is critical.

My relatives are at a higher risk of breast and ovarian cancer .  If I had  not have been tested, we would not have known our options in these cases.   My relatives have choices that could avert cancer, if possible.

Earlier in the year I spoke out about how proud I was of Angelina Jolie, for being pro-active with respect to her bilateral prophylactic mastectomy.

If I would have known about this testing before 2009, I would have had my ovaries removed for certain, and probably preventative breast removal surgery as well.

Currently I am in a monitoring program, one breast MRI and one mammogram per year coupled with regular physical exams.

Because I am on Avastin I cannot have a major surgery.  If you are in chemo you can't have  prophylactic bilateral mastectomy.   So we watch, and so far I am good. Thank God!

On a personal note, I am always really tired and need 12 hours or more per night to sleep.  I am in more pain, but my markers seem to be getting better.  I will stay on Avastin as long as God and my wonderful gynonc allow.

Praying for a screening test for ovarian cancer.....and continued research for cures.  I am also praying for more daily living resources to help us pay bills, rent, co-pays and laws that allow for access to resources that otherwise require a terminal status.  It is weird to have a cancer that is likely to kill you but not be able to access much needed resources that can ease just a little of the daily burden.

Unless you were wealthy before cancer, this is what happens after ovarian cancer.  It is costly in so many ways and really, who prepares for cancer?

If I had breast cancer I would have access to more resources.

That is just wrong on so many levels!

I have to say that I am so proud of the SCCA for having a patient and family fund program, because they have helped me here and there. Cancer Lifeline in Seattle has also been an invaluable resource for me



Peace and Love,
Denise

The Wheel Turns Teal To Heal In Seattle September 18, 2013

My day with my sweet sister Mandy was incredible.  We rode the Seattle Great Wheel together.  We giggled and talked, we just had fun.  It was one of the best days ever.

On September 18, 2013 The Seattle Great Wheel lit the lights of this giant Ferris wheel TEAL, to honor those who are in support of raising awareness for ovarian cancer.

It was a time for all of us to reflect on our health and our loved ones.  It was a time for advocates to share and educate.  It was a time for doctors to reflect.

Mostly it was a time to join together for a moment, and remember those whom we have lost. It was a special moment for those who remain, to be grateful.

I am pretty tired, but it was worth every second.

Thank you Seattle Great Wheel, Seattle Cancer Care Alliance (my second home) and KOMO 4 news for actively helping me share this symbol of hope.  

Thank you Mandy!

Thank you Barb!

Thank you Annie Abbott!

I did not do this alone.

When I asked about this and got a resounding "yes" I was not aware that other people were working on the same thing.  It is easy to see why this great Ferris Wheel is so special, look what it can do.

Some women went to Pier 57 in TEAL with their families and wrote that they had a wonderful time, They said that it was brilliantly lit.  Many others wanted to be here to see this in person.  I hope this little video joins us all together.

This belongs to all of us.  This is for you.

Peace, Love and Blessings

Denise

UPDATE: Seattle Great Wheel to be TEAL All Day Sept 18, 2013

 http://seattlegreatwheel.com/

I want to thank the lovely Annie Abbott for showing support in honor of

Ovarian Cancer Awareness Month.

She just told me that the Seattle Great Wheel will be lit TEAL all day!

The start time is 10am and they will turn off at 11pm.

She welcomes all and anyone who wants to gather on Pier 57 and around the area to share in this symbolic event and to educate others.

There are no formal events on the pier directly, but I do know individuals who are attending.

I am asking for us to take the last 5 minutes of this lighting ceremony to be in silence in memory of our lost sisters, those who have paved the way for our researchers and physicians to learn and grow.  Our lost sisters are the ones who really give us strength, they were strong enough to move through the battle.

When I am down, I listen to "Strong Like You" written and composed by Kathie Lee Gifford and David Friedman.  This was sung to my mom, and every time I listen I also think of our sisters who are struggling or who have struggled.

Chandra Lee Schwartz sings it beautifully and you can see the link on my site off to the right.

"On God's Table there are no crumbs" .....

Please let me know if you will be there!

September 18, 2013

10am to 11pm

Love,
Denise Archuleta
Servivorgirl

September 18, 2013 Seattle Great Wheel To Light The Sky Teal

Seattle Great Wheel

Have you ever seen the Seattle Great Wheel? It is quite a spectacular site. A giant Ferris wheel firmly rests on the boardwalk of Pier 57, overlooking the beautiful waters of Puget Sound.  From their website at
http://seattlegreatwheel.com/index

• The Seattle Great Wheel is the largest observation wheel on the west coast, standing 175 feet tall.

• The wheel has 42 fully-enclosed gondolas. Each gondola seats up to eight people, meaning the wheel can hold over 300 passengers at any given time.

Over the past few months and even last year I imagined what this great Ferris wheel would look like in Teal. When I asked them to help raise the volume of the whispers of ovarian cancer, without hesitation, came a resounding "yes".

I am but a person to whom they responded.

The Ferris Wheel will brightly light the sky TEAL 

 September 18, 2013 

7 pm to 10 pm.

As I will be watching the brilliance of teal in the sky, I will remember all of our fallen angels. I will remember the supportive words, encouragement and love from my family and friends.  I will feel blessed to have had such excellent surgery and chemotherapy. I will want for nothing less for every other woman with this deadly disease.

We will raise our voices and help others to learn more about what ovarian cancer is, does and costs in terms of quality of life. We will also share the blessings that come from living through, suffering through and treating through the many facets of this complex and shifty disease.

Embrace this moment and save the date. Tell your friends. Go for a ride if you are in Seattle that day.
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An Open Letter Of Gratitude

Dear Annie,

I want to share my utmost and sincerest gratitude to you and the people with The Seattle Great Wheel for supporting Ovarian Cancer Awareness Month. You have given rise to our voices, elevated the calls and cast a beautiful light in the midst of our struggles. Many people and organizations will benefit from this beautiful act of support and kindness.

Warm regards,
Denise Archuleta
A patient with ovarian cancer
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Hi Denise,

The wheel will be lit with Teal on Wed September 18th in awareness for ovarian cancer.

Please feel free to let anyone know.

The wheel will be lit from 7-10pm.



Thanks,



Annie Abbott

Communications Director Pier 57
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For those that may need this page to promote this important symbolic event, I have also included a link to our President's Proclamation for National Ovarian Cancer Awareness Month, this September 2013.

Official Presidential Proclamation: September 2013 is National Ovarian Cancer Awareness Month

Peace, Love and Health,
Denise