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Thursday, November 26, 2015

Thanksgiving Panalitas And A Message Of Love

Last Thanksgiving I slept well into the late afternoon.  November is a very difficult month.  This year I was up by 9:00 am!  I thank the Lord Jesus for continuing to condition my heart and mind, my spirit rejoices in His love.

I am alone, physically.  I am not alone in spirit.  It has been a fantastic day.  I have spoken with my dad, sent and received multiple loving Thanksgiving greetings with family and friends. I have also enjoyed lots of fun time playing with my kitkat Marilyn.

Mom's passing, birthday and favorite holiday, Thanksgiving, all happen within a few weeks of each other.  Last year I was immobilized.  This year only partially immobilized.

God awoke me with joy today.  I was excited to cook her favorite meal today, a pot roast.  This will provide many more meals to come as well.  I  am attempting a pumpkin pie and panalitas, a spanish individual pie.  We know them by their common name of empanadas.  I have been searching for the term "panalita" and it seems to evade me.  I wonder from where grandma Archuleta got the word panalita? 

The panalitas are taking longer to cook than I have anticipated, so we'll see how they turn out. Ha!  

Since I have already snacked on cinnamon-sugar pie crust I really don't need anymore calories for the day.  I will prepare a small salad so that I feel some nutritional balance.  Ha!

I will continue to decorate my tree.  As part of a new tradition that I am starting in my humble home, I put up the tree on mom's birthday.  I really felt happiness starting early this year.  Many of us are yearning for more happiness, the world is appearing more and more dangerous and we are seeking safety and love.

God, through his only begotten son, our Lord Jesus Christ, provides this Love to us, always.  He does not force His way into our lives.  I am so grateful to have this chance to get to know Him more and more each day.  Over this year I have gotten more comfortable with mom being up in Heaven because I know she is safe, she is happy and she is Loved.  That is probably why I was able to get up today and celebrate Thanksgiving in my own little way as opposed to being too sad to rejoice in Thanksgiving to God and my loved ones.

Our Pope is an instrument of His love. Please take just two minutes to view these Blessings from God:

I pray for all of you to find security in the Lord and peace with your family.  If you are alone physically say a little prayer to God to remind yourself that you really are not alone.

Happy Thanksgiving!

God Bless you all.

Grandma Archuleta made panalitas for the holidays.  These are little pumpkin pies.
To all our loved ones in Heaven, we love you and miss you.

Thursday, November 12, 2015

Art Therapy

My cross of hope

Mom's fish ornament


I remember sitting at mom's kitchen table in Seattle several years ago, feeling the urge to draw. I was receiving heavy frontline chemo, felt out of sorts and was craving a way to express myself.  Mom, being a true artist, had supplies on the ready.  She pointed me in the right direction and I just sat there, no talking, just painting what came to my mind.

The process instantly brought about a blanket of peace and calm.

This fish ornament had been given to mom by me the Christmas before and I love it so much.  My little rendition gives me a pulse of happiness because the colors remind me of her.  The cross represents my light of hope in Jesus and Love for Christ.  

I am writing today about the importance of participating in art as part of our daily life,  especially when we have a serious illness.  Everyone has the ability to create art. 

We need to nurture our creativity and art therapy is in and of itself a branch of healthcare that can help people cope with fear, pain and the unknown.  It allows for us to express ourselves without justification or explanation. Art "is".

I am not an artist by any means, not like others in my family who can actually draw and paint or sculpt.  I do though love to create things and build on ideas. This blog was originally created by me as a form of expressive art. 

Now I have another new passion.  I love to make soap!  It is a complete distraction.  I literally forget my problems.

Surrounding ourselves with art that pleases our senses is like layering our immune system with hundreds of millions of new T cells.  If you have lots of medical equipment, supplies and brochures in your home environment, try to organize these items so that they are only visible when used.  It will help your mood.  

Spend some time escaping via You Tube watching art videos.  Coloring books seem to be the rage now for adults, go ahead and get one.  Get your hands in it and place the color on the paper.  Allow your hands to follow your heart.  

For those who want to see academic results on how art therapy helps people with cancer, see this link on a study completed by:

Barnes, Diana C., "How Women Use Art and Art erapy to Cope With Breast Cancer: A Systematic Exploration of Published Literature" (2015). LMU/LLS eses and Dissertations. Paper 148.

I also want to plug our local creative outlet for cancer patients,  Cancer Lifeline offers free art classes to all people with cancer, as well as other valuable support groups and resources for people in the Seattle area.  Thank you Cancer Lifeline for your generous contribution to the Seattle community.

November is the month of remembrance.  I pay my respects to all the souls who have departed us for the heavens.  I miss you mom. 

God Bless you all.


Sunday, November 01, 2015

Am I An Inpatient Or An Outpatient?

That is the question and it is the most important question you need to ask if you are moved from the emergency room to the hospital floor.  

I knew to ask it but this last time around I was not able to pin the response down clearly enough.  I live alone, have no family out here to be with me in the ER.  although I can call upon family to talk with the doctors, they do not always call them back with these details.  What is a person like myself supposed to do? 

If there is time, the next time I think I need to go to the ER I am going to resume the habit I had when I was receiving intensive chemotherapy.  I will contact the gynecologist on call or my primary doctor on call and get their assistance in the process.  They can help communicate with the ER hospitalist and provide much needed confidence to the ER hospitalist so that an inpatient admission to the floor is what occurs if I am taken to the floor for treatment and testing.  Medicare severely punishes hospitals for wrongly admitting a patient.

As a cancer patient I am more likely to go to the ER because of all of the side effects of current and past treatments received for ovarian cancer.

I spoke with an administrator at the hospital, thanks to the referral from my amazing hospitalist on the floor.  The administrator shared with me that there is a 48 hour window, the 2 midnight rule, that does allow a hospitalist to change the status if there is substantial back up and great documentation.  Also to note though is that if a person is admitted and they get better before the 2 midnight rule hits, then the documentation needs to add that the patient got better sooner than expected.  

If this confuses you, you are not alone.  Medicare has this new 2 midnight rule in place that requires an ER doctor to justify an admission by predetermining if a patient will be in hospital for more than 2 midnights.  This is insane because time is not a dictator of treatment success.  The ER doctor may or may not yet have that information which is why a patient needs admitted!  

New laws are in place requiring hospitals to notify a patient of this status but not all hospitals are doing this yet.  I was recently in the ER, had been moved to the floor, asked if I was admitted, told yes, but was admitted to observation.  This is an oxymoron, there is no such thing as admission to observation. Observation is kind of a holding status. I had already received a CT scan and when I found out I was not an inpatient, as needed, I was very disheartened and upset.

If you hear the words "admission" "observation" "monitor" in the same sentence, BEWARE.  I have always been an advocate for getting clarity about "observation status" for myself and others yet I fell into it anyway. I do not think any patient under the influence of IV pain meds or in a state of duress can be considered competent enough to decipher the code words for observation unless the words "you are an outpatient under observation" are branded on our hospital band, written on the communication board AND communicated to a caregiver or family member.

By the grace of God the hospitalist on the floor stood up for me, the patient.  He asked hard questions and it was clear that I was an inpatient, my status corrected and I was provided assistance to get my situation clarified. Thank you Lord!  Imagine though had I been totally confused for any reason.  I would have had no way of knowing this until I received an outrageous bill for services not covered as an outpatient in observation.  This happens to thousands of people per year.

For an in-depth look at this huge problem link to Hospital  

New laws are in place to require hospitals to notify patients with certainty as to their status, but not all hospitals are following the rules yet.

The Notice of Observation Treatment and Implication for Care Eligibility Act would require a written, explanation of the Medicare patient’s status as an outpatient under observation, why they are in that status, and outline the cost sharing and skilled nursing facility (SNF) implications.  Congress Passes Requirements for Observation Status Notification, Cost Assessments

I personally believe the observation status option should be removed in its entirety and Medicare should enable doctors do what they need to do to help their patients.  I am going to add my 2 cents and say we need a single payer system for everyone and get rid of all of this red tape that interferes with high quality care.  Especially deceiving misleading red tape involving observation status.

When we are taken to the emergency room we do not have any idea as to if we will need any rehabilitative services. The outpatient status negates coverage of skilled nursing care, if such a need arises.  Medicare beneficiaries also will not be covered for services provided in the hospital if the patient is under observation status, as opposed to inpatients.

Here are a few helpful links regarding observation status, its consequences and pending legislation to alleviate some of the resulting financial hardships that break the backs of medicare beneficiaries.  If you have medicare advantage you could fall prey to this hardship as well. Please contact your insurance company.  Do not make any assumptions.  Medicare recovery audit program targeted for reform after spike in observation stays
By Helen Adamopoulos  | May 20, 2015

S.843 — 114th Congress (2015-2016)
Improving Access to Medicare Coverage Act of 2015

I am sorry to have imposed all of this information upon you because it is not uplifting.  I just want to do all I can to help you to avoid falling into this loophole.  The original intent of the observation status was to prevent fraud and its use has gotten out of hand hurting thousands of people, placing good doctors in a terrible position and costing hospitals huge fines and placing patients in financial hardship, possibly bankruptcy.  

It is costly to manage, I imagine.  Landsharks can be sent back to patients to recover money after an audit that has reversed a status from inpatient to observation. This ruins everything for these patients forcing them to lose savings, homes and assets that they have worked for all their life. It is just criminal in my mind.

Remember to ask up front if you are an Inpatient or an Outpatient!  By the way, I am really knocked down.  I live literally 50 feet fom my pharmacy/grocery store. When I walked across the parking lot to fill my prescription the staff gave me a free bottle of water, asked me to please sit down and told me I was very pale.  I was breathing hard, very short of breath.  I did not realize how weak I was.  This evening I did not make it to church, as I desperately wanted.  I am too tired and do not want to drive. I have not driven a car since October 14th.  I have had my fill of hospitalizations for awhile.....ha.

I hope you find these resources helpful.  It is a lot of information to swallow.  I hope there are no typos, I am still very fatigued from my stay at the hospital.  Happy November by the way.

Peace and Blessings!


Monday, October 26, 2015

Emergency Surgery, On The Mend

Hi everyone.  This is a short post because I am just darn tired.

My Avastin is on hold until November 24, 2015.  I had an emergency surgery October 15th to have my gallbladder (GB) removed.  I dislike that word so I will use the initials GB instead.

I was awakened the day prior at 1 am with horrible pain in my upper abdomen that just got worse and  worse.  I was sick, no anti-nausea meds or pain meds worked.  I finally had to call 911, Of course I was not given any pain meds until an ultrasound was done.  I wonder if the ambulance personnel thought I was a drug addict because I had pulled out a bunch of pill bottles looking for amything that could help.  

The doctors started me on antibiotics and I had the GB surgery the next morning.  I was given lots of dilaudid to get me through until surgery.  

I never knew a GB attack was this painful.  Several friends have since shared their GB nightmares. 

I wanted to share a few important pieces of information:

1. Always have your med, allergy, diagnoses and contacts information on hand. I always do, except for of course this past time. The ambulance driver may not be able to take you to where your primary or oncologist are based.  In my case I literally was crying out for the closest hospital.  That is how bad the pain was.  I did not have this info on me and I could barely speak. It was rather difficult to tell them this information.

2. If you are not comfortable with the resident surgeon, please ask for the attending surgeon.  In my case, given that I have cancer, I just felt uncomfortable with a resident doing my surgery. The resident was very polite and understood. My operation was performed by a board certified surgeon, and for that I am grateful.

I have been exhausted, am still on pain pills, but have greatly improved.  I have some really amazing friends in my building who watched my kit kat Marilyn and did a little shopping for me. I should be OK to drive by the end of this week.  I am slowly getting back in the groove of things.

So I see my gynonc in a few weeks and then prayerfully all will be well again and I can resume my Avastin.   In the mean time I pray this break from Avastin does not allow any surge in cancer activity.  It is a great time to rebuild my stamina.  

In case you are wondering as to why the Avastin needs to be on hold, Avastin increases risk for bleeding.  I do have a couple of new clips inside along with 5 incisions that all need healing from the GB surgery.  Plus Avastin can cause one to be a slow healer.  So there you have it.

Onward and upward.  Time for the holidays!  Time for Christmas cheer!  Yes I am one of "those" people.  I started listening to my Christmas music today.  Yay!

Peace and Blessings

Friday, October 02, 2015

Would You Like To Help Dr. Swisher Team Lead SU2C?

How do we decide, when we are able and ready, where to place our valuable resources when we want to support ovarian cancer research?  It can get cloudy and confusing because there are many very powerful and credible organizations that have dedicated hard working employees and volunteers who live for their cause.

My personal opinion is that breast cancer research and ovarian cancer research needs should be marked together as one strong united front.  Women with breast cancer who have BRCA mutations need to know that they also have a risk for ovarian cancer.  So I am taking advantage of this time of year to share opportunities that support women's cancers.  I want to help a greater number of people.

The Director of Philanthropy at the University of Washington, David Chow, found for me a very special fund that supports ovarian cancer research done by the good gynonc doctors at the Seattle Cancer Care Alliance. Dr. Elizabeth Swisher, the team lead for the Stand Up To Cancer Ovarian Cancer Dream Team, uses this critical fund, per David Chow, to augment her SU2C research.

As you know I am also a patient at SCCA and they are rated the 5th best cancer treatment center in America.  My home is with the SCCA, UW Medicine and all of my caring providers in Seattle.

The Feuer Research Fund allows for easy giving with both small and monthly donations.  Please consider supporting this fund.

Feuer Research Fund for Prevention and Treatment of Ovarian Cancer

Here is a link to recent research completed by Elizabeth Swisher, M.D. regarding the future of multi-gene testing.  Please read this article because it gets to the heart how this kind of testing can more accurately identify those who need prophylactic cancer prevention measures and those who may not.

Peace and Blessings

Missing mom today