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:

http://www.nbcnews.com/storyline/pope-francis-visits-america/baby-kissed-pope-sees-brain-tumor-shrink-family-says-n469751

http://www.12news.com/story/life/faith/pope-coverage/2015/09/23/phx-family-believes-popes-blessing-saved-babys-life/72021618/

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.

Art Therapy

My cross of hope

Mom's fish ornament

ART

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.

 

http://digitalcommons.lmu.edu/cgi/viewcontent.cgi?article=1152&context=etd&sei-redir=1&referer=https%3A%2F%2Fscholar.google.com%2Fscholar%3Fas_ylo%3D2015%26q%3Dart%2Btherapy%2Bcancer%26hl%3Den%26as_sdt%3D0%2C48%26as_vis%3D1#search=%22art%20therapy%20cancer%22

I also want to plug our local creative outlet for cancer patients, http://www.cancerlifeline.org  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.

Denise 

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!  

Two Midnight Rule CMS.GOV  

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 Medicine.org.  

http://www.hospitalmedicine.org/CMDownload.aspx?ContentKey=bd419fbf-a86d-438e-826a-86e720e0543c&ContentItemKey=bdde0512-d58c-4706-9cf8-73dec7592704

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.

http://www.hfma.org/Content.aspx?id=32889  Congress Passes Requirements for Observation Status Notification, Cost Assessments

RICH DALY, HFMA SENIOR WRITER/EDITOR

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.

http://www.medicareadvocacy.org/center-and-observation-status-on-nbc-nightly-news/

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.

http://www.hospitalmedicine.org/Web/Advocacy/Key_Issues/Observation_Status/Web/Advocacy/Observation_Status.aspx?hkey=4b746745-7a0b-4295-a842-375bc28fe64a&gclid=CjwKEAjw8NaxBRDhiafR-uvkpywSJAAxcl6fVLs00k0faFVQyR33iShRVDoW47ngwgFOBu3_vaMVBRoCXkfw_wcB

http://www.modernhealthcare.com/article/20150520/NEWS/150529982  Medicare recovery audit program targeted for reform after spike in observation stays

By Helen Adamopoulos  | May 20, 2015

https://www.congress.gov/bill/114th-congress/senate-bill/843/text?q=%7B%22search%22%3A%5B%22Medicare+Observation+Status+Repeal%22%5D%7D&resultIndex=6   BILL

S.843 — 114th Congress (2015-2016)

Improving Access to Medicare Coverage Act of 2015

http://www.medicareadvocacy.org/self-help-packet-for-medicare-observation-status/    Self Help Packet for Medicare 

Observation Care Payments to Hospitals FAQ American College of Emergency Physicians

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!

Denise

Servivorgirl

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

Denise

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

http://depts.washington.edu/givemed/give/?page=make&source=ovafeu

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.

http://oncology.jamanetwork.com/article.aspx?articleid=2425834

Peace and Blessings

Servivorgirl

Missing mom today

Women Still Placing Health of Others Ahead of Their Own

I was thrilled to be invited to New York to interview Dr. Lewin but unfortunately I was not able to attend.  Please look closely at the results of this survey.  Share this with women in your circle so that they can be inspired to ask more questions about their gynecological health.

Peace and Blessings

Women Of All Faiths At The OLCC Retreat Center

To say we got more than we expected is an understatement when reflecting upon the healing retreat at the OLCC Retreat Center in Corpus Christi Texas this past week.
http://www.ourladyofcc.org/adoration-chapel/the-history/

Women of all faiths came to hear the comforting words of Sister Anne Marie Walsh, a S.O.L.T. Sister who has twice survived cancer. Her message provided great relief from the deep darkness that can come with having lived with cancer.  She reunites us with Christ via the Spiritual Exercises created by St. Ignatius of Loyola.  Using the practical exercises in combination with intercessional prayer to our Queen of Peace, Mary the mother of God,  Sr. Anne Marie gave us a way to recreate our relationship with Jesus Christ our Lord.

How we see ourselves, how we see God, how we relate with God and with others, how we see the future and heaven directly effect how we deal with suffering.  There are beautiful graces obtained in suffering, and at the retreat, we learned what this means. My eyes are lifted up, my hopes are great and all the sweet ladies attending OLCC received special Blessings from Father Dan Estes. Those ladies are lights of hope and beacons that guide others to Jesus' great and eternal love for us, His children.  Jesus does not intend for suffering to be. This retreat provides much needed answers to the spiritual questions that arise out of learning we have something like cancer.

The campus in and of itself exists as a gift from God.  The beautiful Perpetual Adoration Chapel under the spectacular Blue Dome joyously invites everyone to enter and experience the Love of God. In the retreat center we experienced mass in a chapel built with the love of Father Dan and his brother. The meals are made with a most kind and generous spirit by a woman named Delores and her very friendly staff. Sr. Laudem Gloriae, a special angel on earth, attends to our every comfort and need with great enthusiasm, attending to all the details necessary to make us feel at home. Sr. Anne Marie Walsh comes to us with having had real life experiences with cancer, wisdom, a deep sense of compassion and inspiration to lift us out of the darkness in this most peaceful and serene setting.

Truthfully speaking there is no one way to summarize the message or the gifts received at the OLCC. Each woman had their own individual needs and questions.  Each woman went home with more than what was asked for and each face had a beautifully brilliant smile.  They were beaming with joy and because of that I know it was a great success.

We will be continuing this very special retreat in the future.  Sr. Anne Marie Walsh has the abundant love of Christ in her heart and in her voice.  I, along with the others, truly did not want the event to come to a close.  But with us we take these teachings and prayers to carry home with us for our benefit and the benefit of others, so that cancer is not a message of death but a gateway to living the Life and Love of God through Jesus. Remember, women of all faiths were in attendance.  My vision was and is for any woman with cancer who seeks comfort and grace from Jesus to come to the OLCC for the sake of their relief from fear and anxiety.

Please remember to share and save this page for future reference.  I will be announcing soon the upcoming schedule and am praying that all of the ladies who were in attendance will continue to experience the joy received at the OLCC and that their renewed relationship with Jesus stays most evident in their daily lives as they live their beautiful lives.

God Bless Father Dan Estes, Sr. Anne Marie Walsh, Sr. Laudem Gloriae and Delores, their staff and all the beautiful ladies who attended this retreat for you are witness to the breath of life in Jesus Christ our Lord.

Here is a Facebook Link to the OLCC:
https://www.facebook.com/OLCCBookstore?fref=nf

Here also is a link to a blog written by Sr. Anne Marie Walsh:
http://missionaryinthemodernworld.blogspot.com

Peace and Blessings,
Denise Archuleta
Servivorgirl

"What Every Woman Should Know" video link

The message here is that if your body is experiencing problems outside of what you normally (baseline) know to be true, talk about it with your doctor.  My two cents: if your doctor is not listening, either find another way to communicate with your caring doctor or get another opinion.  It is ok to do that too.

This video is a fantastic one to share with other women who want to learn more about the possible symptoms of ovarian cancer.  Please send this to them.  It could save a life.

This link can also be found at http://www.foundationforwomenscancer.org/educational-materials/ovarian-cancer/

Peace and blessings,

Denise a.k.a. Servivorgirl

NASCAR And The Race To End Ovarian Cancer

Martin Truex Jr. Foundation Go-Teal link

"The Martin Truex Jr. Foundation raises awareness, advocacy & research funding for cancer initiative specific to ovarian and childhood cancers.

A little over a year ago Sherry Pollex was diagnosed with ovarian cancer, we are driving awareness for symptoms and raising funds through this online auction and the sale of Never Give Up bracelets to benefit treatment research."  courtesy of The NASCAR Foundation Website.

Danica Patrick is joining forces with Martin Truex Jr. to raise awareness of ovarian cancer and to support fundraising efforts that further ovarian cancer research.  

We pray for Sherry Pollex to continue to be healed as our cause is rallying support from NASCAR this September.  The NASCAR Foundation is launching their auction on September 6, 2015.

To find out more, link to http://www.nascarfoundation.org/Go-Teal

You can also find more information via the following FACEBOOK Pages:

Martin Truex Jr : https://www.facebook.com/pages/Martin-Truex-Jr/467830453284122

Danica Patrick : https://www.facebook.com/DanicaPatrick?fref=ts

Peace and Blessings,

Servivorgirl

Women's Cancer Awareness Month Begins

Foundation for Women's Cancer 2015-Fact-Sheet

Please visit to this most comprehensive link on women's cancers from the 

Foundation for Women's Cancer

When I was diagnosed with high grade serous cancer, stage IIIC, I also had concurrent high grade cervical cancer.  I moved to Seattle AFTER diagnosis and surgery to receive better care.  

My care team in Seattle means the world to me.

I am not an advocate exclusively for ovarian cancer awareness.  I advocate that women learn about all female cancers.  Ovarian Cancer needs the most support and awareness, but no cancer is more important than another.  All cancers are a cancer in need of a cure.

Please share the link to the http://www.foundationforwomenscancer.org with every female in your life because we need to take care of our bodies and we need to know what to expect when things start to go wrong. 

Peace and Blessings,

Servivorgirl

Finances and How Spiritual and Religious Beliefs Help Us

Hello Everyone,

I want to share two important articles about living with cancer. The first is another wonderful article I located on http://www.cancercompass.com/cancer-news/article/50346.htm?c=NL20150812

Cancer Compass is a valuable resource for everyone with cancer.  Below is the first quote from the article: 

"MONDAY, Aug. 10, 2015 (HealthDay News) -- Spiritual and religious beliefs may benefit cancer patients' physical and mental health, researchers say.

They conducted three reviews of all published studies on the topic, which included more than 44,000 patients. However, none of the studies were able to show a cause-and-effect relationship between spirituality and better outcomes, only an association between these factors."  

The timing for this article could not be more perfect as I have about 5 or 6 spots left at the upcoming retreat for Women With Cancer at the OLCC Retreat in Corpus Christi, TX. Please link from the above image, off to the right, to register for our event taking place September 17-20, 2015.  It is free and if you want to donate, they accept donations upon conclusion of the retreat. Rooms are private/bath with meals included. I have done several posts about my amazing experience at the OLCC.  Please attend if you are able.

The second topic is finances.  We are in great need, as a community of people with cancer, for financial resources. Cancer uproots people and generates a tremendous number of bankruptcies due to job loss and costs associated with cancer care, side effects and extra expenses needed for managing life in general. Research money does not go to daily living and medical expense needs.

Linked below is an article written by one of our lovely ovarian sisters published in Kevin MD.  Many people work with cancer, but not all of us can, especially people like me.  I am hard to employ because I can only work when I am feeling good.  That is not predictable and it varies so much, my fatigue remains extreme. But maybe I could do a small project here and there. Project work is probably ideal for people like me, project work with no tight deadlines.  HA. I will figure it out eventually but please read this article so that you can get this perspective from someone other than me.

http://www.kevinmd.com/blog/2015/08/this-is-what-its-like-to-face-recurrent-cancer-while-going-broke.html

Peace and Blessings, 

Servivorgirl

South Lake Union. Seattle, Washington

Today Marks My 6 Year Cancerversary

Today marks 6 years since went under the knife. I remember mom and my aunt faithfully attending to every need and listening attentively to every word spoken by the nurses and doctors prior to the surgery.  Mom would later be standing in front of me the first time I sat in a chair to show me that I can be strong.  I just wish I had known that was what she was doing at the time. I was very clostrophobic. My cancer took a toll on her and for that my heart still aches. God I did not want for my cancer to take a toll on her or anyone.

Two days prior to surgery I worked my last day, making every effort to prepare my work space so that someone could take over my responsibilities.  My pain was so bad I could not be upright more than an hour at a time.  I was looking very pregnant by then and unable to wear any pants or shorts.

The prep, the packing, the planning all so tasking because after this major surgery I knew I would be needing help for awhile.  My family running on adrenaline to assist me however it could be done because I was single, renting a room in a house. What a nightmare. My sister and aunt literally taking two weeks off from their lives to cater to mine.  My brother driving my car to Seattle and me moving from California to Seattle to live with mom so that I could get chemo at the SCCA. My sister did all the legwork to find the SCCA for me.

My life and the lives of those around me were completely upended. A traumatic time and event that still lingers in my battle with panic and anxiety today.

Life is much different now. My sweet mom has since passed away and now I live in Seatttle alone once again.  Right now I cannot work but am increasing my participation in therapies to improve my overall health. I am and will always be on Avastin until I cannot tolerate it anymore as I LIVE with metastatic cancer.  Praise God for this medication and for 6 years of living since that day!

I never thought I could live with cancer, but I can!  I have medical appointments every week, but it is not trauma, it is just a new way of living.

My family here is my community of neighbors, friends, church and healthcare providers. I long to live where I can see the water from my window but am not likely to ever move away from the SCCA. The SCCA has been my lifeline.  My gynonc, Dr. Heidi Gray, has been my angel on earth.

So on this day I celebrate a second chance at living and hope that my story offers hope to you, my reader, that no matter what your barrier, there can be a rainbow. My prayers and thanks go to all of my family who sacrificed so much of their lives to go through this with me.

My faith in God and my daily prayers helped me to stay grounded and strong during these years.  

I invite you to attend an enlightening retreat that I feel called upon to nurture.  It will be led by Sr. Anne Marie, a cancer survivor herself, of the S.O.L.T. Sisterhood.  I attended their retreat in January and was so lifted by the epxerince that it was only natural to ask them if we can do one for women with cancer. Sr. Laudem Gloriae was so delighted to help.

Please join us in September.  We have room for 10 more participants. The fee is a donation of your choosing. The rooms come with private baths and meals are provided. The campus has a beautiful meditation garden and Perpetual Adoration Chapel.  

The link is located at http://www.deepprayer.org or you can email me your name, address, phone number and email address to: servivorgirl@gmail.com to register for the event.

Thank you for sharing in my joy.

God Bless you.

My Knuckle Knickers: A Wrap Hack

I have had rheumatoid arthritis (RA) since I was 15 years old.  Biologics such as Enbrel tank my white blood cell counts, so I am stuck with prednisone, plaquenil, leflunomide and rituxan to manage my disease. RA and cancer together are a difficult combination of illnesses to balance. All things considered I feel fortunate because my physicians communicate well amongst each other to discuss options that keep my pain and swelling at a minimum.

I want to share a recent “hack” with you that thrills me.  Introducing “Knuckle Knickers” (ha!). This wrap is simply and exclusively used to provide comfort and it comes from me to you, as a patient.  It in no way replaces any prescription for a thermoplastic or neoprene hand support recommended by your doctor or therapist.

I get too much pain wearing hard splints, even if the splint is lined.  I don’t want to wear neoprene gloves all day.  Sigh.  So this is what I created for myself.  Maybe you will find this useful.

Our MCP (metacarpal-phalangeal) joints suffer greatly due to RA disease.  They get very weak and swell easily with minimal use. Everyday use of our hands can cause permanent damage.

I have searched high and low for something to protect my MCP joints exclusively with no luck. Kudos to the makers of that soft colorful shelf liner material.  I love this stuff.  It can repel water and is easy to replace when this strap wears down.  For example I will wear this when unloading the dishwasher, unloading groceries, doing household projects or even while driving.

Here are some photos of how I am using this soft rubbery shelf lining to gently support my MCP joints.  All I did was cut a 1” strip of material and place it gently around my knuckles.   I layer it twice around without increasing pressure on my knuckles.

Do NOT stretch the material or tighten it around your MCP joints.  Simply spread fingers as much as possible while gently wrapping the material around your knuckles.  This wrap will rest securely in place once either tucked in or secured with a clasp, as seen in the photo. I like it because it is soft and feels good.  

Do NOT squish the MCP joints together when applying wrap. Wear as needed. Think of this as simply an extra layer of skin. The material breathes, can be cleaned and is pliable.

This soft material protects the MCP surface from extreme pain in case I accidentally knock the back of my hand into anything, like a door frame.  Ouch! Seriously, tapping my knuckles on anything hurts quite a bit.  I can don and doff this very easily. I know that for some people with RA it can be painful to put gloves on so this kind of wrap is very gentle and easy to complete.
 

Having RA requires us to re-think how we use our hands.  We need to avoid using our hands in a way that encourages movement in a damaging direction. That is all grand and good and definitely worth learning.  It takes at least 30 days to change a habit, so be patient.   

*Glassware should be held with the palms of both hands.  I did not have a tripod when taking the photo below  ;-).  My Knuckle Knickers helps me grip the glass surface, easing the pressure on my joints if I am not using my palms exclusively.

Always check with your physician to get their approval as well.

Please link here for information on how to help your hands:

http://www.arthritis.org/about-arthritis/where-it-hurts/wrist-hand-and-finger-pain/wrist-hand-and-finger-care/prevent-hand-wrist-pain.php

Peace and Blessings,

Servivorgirl

Ouch

Simple shelf liner

1" wide

Do not squish, this is just like another layer of skin.

Takes a little pressure off the joints.  

Use two hands to lift cups and glasses.