The “Battle of the Q’s” PART ONE

Emma's Battle of the Q's

 Recognize three new acronyms: NED; MBC; + AND?

It’s easy to be an armchair quarterback, and intellectualize QUALITY of life vs QUANTITY of life until an accident or a terminal disease catapults you to the business end of a buzz saw. Don’t become complacent like I did.

I had STAGE IIIA breast cancer in 2004, after multiple surgeries, chemo and radiation. I was anxious before every six-month checkup, and after five years, the annual visits. What a relief to be told: “No Evidence of Disease (NED).” I took NED for granted. Excruciating headaches in late 2015 led to a diagnostic cervical CT scan, which identified hairline fractures in my cervical spine. A second CT scan, plus a deep needle biopsy of my Iliac crest, verified that I’d leapt over STAGE IIIB—and landed in STAGE IV cancer, which is where the bus stops. Totally blindsided, NED was replaced with a new acronym: Metastatic Breast Cancer (MBC).

Treatment plan: Ten doses of cervical radiation in December; six months of wearing hard and soft neck collars 24/7; daily Femara pills, and a monthly injection of Exgeva to strengthen my bones. June CT scan–no new tumors. While intermittent bone pain in my legs and ongoing fatigue punctuate my daily activities, now’s the time to reinforce my End of Life (EOL) discussions, i.e., My Exit Strategy that I’d designed with my website in 2013. Research on bone metastasis shows a five to ten year life expectancy, so it’s a perfect time to rev up this conversation, again.

If you were buying a car, you’d check out the dealership’s reputation, right? Why not do the same, and investigate your future EOL needs like geographically desirable hospice facilities, caskets, cemetery plots, funeral homes or cremation services, now, before you need it?

I remind my adult children that just as the citizens of Chicago were told to vote early and often, when my health goes downhill, they should use the same approach with the Hospice I have chosen. Start early and ask often: “Is my Mom ready to go into hospice yet?” Every patient will decline, and the doctors will be asked: Would you be surprised if she died in the next six months? I don’t want to be cheated out of one day! Give me hospice!

Here’s the third acronym: Allow Natural Death (AND). My directions are simple and clear. Be prepared for the time when my cancer becomes aggressive, or stops responding to treatment. If a medical crisis develops, my condition could deteriorate very quickly. Don’t panic. Keep my POLST* and Advance Directives visible. Focus on comfort care—only give me the best QUALITY of life possible. No heroics, last-ditch surgeries or attempts to prolong my life—which in reality just prolongs a patient’s suffering. DO NOT send me to the ER or the ICU. Keep me at home. Re-read my Directives. Review our state guidelines for paramedics. If I can’t breathe, don’t call 911. Never allow anyone to crack my ribs, or surgically open my airways. Stay calm. My goals have changed—I’m looking forward to my eternal life. As soon as I am Absent from the body, I’ll be present with the Lord. I’ll get there sooner if you remember AND –Allow Natural Death.

POLST*    Physician Ordered Life Sustaining Treatment. States use different terms. Find yours on this map www.polst.org

The linchpin to End of Life (EOL) planning is to stay in control. Make your personal Exit Strategy air tight. Clarify your wishes now, and keep talking about it until your family understands the blueprint you’ve outlined for them. Research demonstrates that when the family is at peace with your advance decisions, they can concentrate on mourning and remembering your legacy—which keeps you alive in their hearts and minds.

Coming soon:  PART TWO   Building your own Quality VS Quantity charts.

 

 

 

Q and A with Kara Dolce, Founder of Fighting Pretty www.fightingpretty.org

Sample box from FIGHTING PRETTY

Common Denominator for Cancer Patients (CDCP)

                 Appearance = Self Image (SI)

Elizabeth:  Speaking from personal experience, losing my hair, my eyelashes and eyebrows was one of the most devastating consequences of chemotherapy in 2004. The stress of radiation and multiple surgeries contributed to my losing 30 pounds: I looked emaciated! The American Cancer Society (ACS) sent a Reach to Recovery volunteer to share her cancer experiences, and give me a post-mastectomy Teddy Bear pillow. She urged me to attend a Look Good/Feel Better (LGFB) session held at the U S NAVY Hospital in Bethesda. A volunteer demonstrated how to work around the ravages of cancer, and sent us home with a bag of free (donated) cosmetics. http://lookgoodfeelbetter.org/

Flash-forward to September, 2015, when my former SOWER* volunteer friend, Betsy McGuirt was enrolled in home hospice care. Betsy and her husband had battled brain cancer for fourteen months. Their goal was to have as much quality time as they could, with their family and friends.

I think many of my readers know the frustration of wanting to help a friend with cancer, but don’t know what to do, particularly if you live in another location. I called ACS to schedule a “Look Good/Feel Better” program for Betsy, but they had no programs in rural North Carolina.

I don’t remember how I found www.fightingpretty.org, but as soon as I ordered her package, they sent it immediately.

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Betsy left me a tearful voice message: “You made my day!” She loved everything in the box, including the Pink Boxing Gloves which reminded her of her father’s life as a boxer. Her husband passed the gloves on to me, now that my breast cancer has metastasized to my bones. They are a constant reminder, always positioned above my desk.

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Q:  What’s been the biggest surprise since you incorporated Fighting Pretty Inc. as a 501(c)(3) non-profit organization in 2013?

A: The biggest surprise has been the impact that Fighting Pretty and our Pretty Packages have had on the women who have received them. We have received thousands of thank you letters from women who have received our Pretty Packages ranging in all ages, all types of cancer and from all over the world. Our Pretty Packages are really making an impact on women battling cancer and in some cases, continue to make an impact on their families even after their loved ones may have lost their battle with cancer.

Sample box from FIGHTING PRETTY

 The outpouring of generosity and love from friends and loved ones requesting Pretty Packages for women battling cancer, companies donating thousands of products and cosmetics, and individual donors supporting the cause has been incredible! We are so grateful for all of our supporters – big and small. Your strength gives us strength!

Q:  What’s been the most effective way to let people know about FIGHTING PRETTY ?

A: Most people are finding out about Fighting Pretty through social media and word of mouth. There are many referrals that come from women who have received Pretty Packages; however, we are working on attending more cancer walks in 2016, and partnering with even more cancer hospitals around the country to distribute literature about our programs and even donate or give away Pretty Packages to current patients getting treatment.

Q:  FIGHTING PRETTY is now three years old. Tell us those amazing statistics of how you’ve managed to help so many women!

A: Fighting Pretty started very organically. I was given a pair of mini pink boxing gloves as a symbol of strength and hope. And when I finished battling cancer, I not only sent on my boxing gloves to a newly diagnosed “fighter,” but I wanted to help all women battling cancer feel strong and beautiful, like my friends and family had done for me. I started by sending one care package to a friend. Then another package to someone else’s friend. And it got to the point where I realized I should send these to everyone, even if I don’t have a direct connection. I started a Facebook page, created a logo and the next thing I knew, I sent 11 in my first month. Then I doubled that, then tripled that, and finally reached the highest month – October – when we sent over 100 Pretty Packages. Next came a request from Australia, then France, then the Philippines. And next thing I knew, with the help of my mom, we sent over 2,500 Pretty Packages to 49 states (no one in New Mexico!) and seven countries in three years.

Because the Pretty Packages are personal, contain quality items that have been carefully procured, and are generally sent from a friend or family member, recipients of the packages absolutely love them. And because friends and family members don’t really know what to do to help their loved one who is battling cancer, they turn to us!

Q: I just asked all of my Facebook friends to “Like” the Ohio State University FIGHTING PRETTY college chapter. It is alarming how many young women are being diagnosed with breast cancer. How can we get more colleges to join this movement?

A:  As a young breast cancer survivor myself, it is alarming, but a real issue. My personal opinion, not backed by research, is that more women are aware of breast cancer now, so they are finding it younger, but living longer because of developed research. Only 15-20 years ago, not as many younger women were aware of the disease, and so they were less likely to do self breast exams, resulting in more advanced breast cancer later in life. Again, this is my personal opinion – not backed by research.

I am very passionate about spreading awareness of Fighting Pretty, but also the promotion of self breast exams.  I know that when I was 26 years old – only a few years out of college myself – the last thing I thought about was getting breast cancer. It was my grandmother’s death that triggered me to do a self breast exam, to find out I had Stage 3 breast cancer that spread to my lymph nodes. I’m happy to say at 34, after surgeries, extensive treatment, and hormone therapy, I am cancer free!

The partnership with OSU came about very organically. A student, Hope Farabee, was doing a class project and wanted to help cancer patients feel beautiful. She found us online and wanted to help. Together, we developed a 3-step pilot Fighting Pretty club: (1) Fundraise (2) Make Pretty Packages (3) Distribute to a local cancer hospital. The OSU team is starting their fundraising step this month!

Q: What’s the best way for potential cash donors or IN-KIND corporate donations to reach you?

A: Visiting our website is where you will find the most information about how to donate. We are always looking for financial donors to back our mission so we can continue to grow and spread awareness of our cause across the nation. In-kind donations help us send quality items to the women who need it most – the women who are Fighting Pretty. We have worked with really big brands like Maybelline, OPI, Revlon and Mary Kay, and smaller brands like Alima Pure and Inspyr Socks. We love making new partnerships because it not only helps us to grow our business, but it helps to spread awareness to help even more women around the world feel strong and beautiful during their cancer journey.

For cash donations, people can donate right through our website:www.fightingpretty.org or send a check to: 2645 SW Maple Lane, Portland, OR 97225. For in-kind donations, please contact us atinfo@fightingpretty.org. We are excited to hear from you!

Q: How often do you need volunteers to help build your FIGHTING PRETTY packages for mailing?

A: Right now, we are sending on average 50-75 Pretty Packages per month. So we typically only meet once every month or every other month, depending on how many Pretty Packages we have “in stock.” However, as we grow, we may be hosting more Pretty Package development events! It’s not the building of Fighting Pretty Packages that we need the most help with, it’s sourcing the materials and spreading awareness so we can help even more women battling cancer feel strong and beautiful during the toughest time of their lives.Screen Shot 2015-07-07 at 6.35.05 PM

Kara Dolce, Founder, www.fightingpretty.org

 

before you go

“Before you go…” BLOG posts focus on critical End of Life Issues. Request custom-designed workshops for your church or community group. Click here.

True Confessions: I AM a “NAGGER” *

Elizabeth Hurlow-Hannah is nothing less than ONE BIG NAG and I will be indebted to her for being such for the rest of my life.

The truth of the matter is that Elizabeth has been a very good and close friend of my wife and me for almost twenty years now. But in the last several years, she has been reminding me that I should put my will, health advance directive and other end-of-life papers in order.  When she became aware that I was procrastinating on getting this matter accomplished, she became a bit more forceful in reminding me how important this matter is. To get this dear friend off my back, my wife and I went to an elder-law attorney about a year ago and had the appropriate papers drawn up. We both indicated in our advance health directives that we wanted no extraordinary resuscitation measures to be taken in case of a health crisis, including feeding tubes. Continue reading

Give Grief Space to Breathe

Guest Blogger: Kim Adams, Certified End of Life and Grief Coach

Grief is the natural, common response to a loss. And loss is a human experience. Therefore, we each experience loss in one form or another. We tend to most often think of grief after the death of a loved one. However, grief occurs along the journey — along the journey of life (divorce, loss of friendships, job loss, etc.) and along the caregiver journey.  We can experience the anticipation of loss — grief that our loved one is no longer the person they once were with diminished physical abilities and/or diminished mental capabilities especially with dementia or Alzheimer’s disease. And in addition, the loss of our own identity, including the the loss we feel as our role of caregiver will ultimately change. Continue reading

Death & Dying, Loss & Grief Brought to You by THE DEATH CHICKS

The Death Chicks? Are you kidding me? How outrageous and fun, melding the disparate concepts, “Death” and “Chicks” into a weekly show on Google Hangouts On Air (HOA).

Thanks to the internet, two professionals working in the death industry, Patty Burgess/Philadelphia connected with Myste Lyn/ Canada. Getting acquainted through Skype, they discovered they were “on the same wave length,” and shared a similar sense of humor. Their conversations were always punctuated with laughter, a key element to releasing endorphins in the brains. As they explored the spectrum of end of life issues to discuss in a weekly show, they knew laughter was a key component, because it puts people at ease, and lessens their fears. Patty said: “Our individual hospice training and personal coaching perspectives created our basic philosophy: you can’t enjoy life to the fullest unless you stop being afraid of dying.” Continue reading

Learn How To…Talk To Your Doctor…and never hear the ugly words ‘Death Panels’ again!

Just in case you forgot how “Death Panels” became The LIE of the YEAR in 2009, click on this link, http://www.politifact.com/truth-o-meter/article/2014/dec/15/look-back-politifacts-lie-year/   — skip down to the “PolitiFacts LIE of the year for 2009.

How many people died in the past six years, without the benefit of an “end of life” conversation with their physician(s)? Is this on Sarah Palin’s conscience? Continue reading

5 Tips When Making the CPR/DNR Decision  

This guest post is provided by Bioethicist, Viki Kind.

CPR or cardiopulmonary resuscitation used to be very simple to understand. Cardio stands for heart, pulmonary stands for lungs and resuscitation means to revive from death. When a patient died, someone would push on the person’s chest to try to restart the heart while giving mouth-to-mouth resuscitation to help the person breathe. Over time, CPR has become more complex as healthcare professionals have discovered advanced ways to try to bring the person back to life. What seemed like an easy question, “Does the person want CPR?” has turned into a more complicated decision.

What do you need to know to make a good decision? Continue reading

Thinking of Suicide? Know someone that has? Please read this: Open Letter to Sam…

Completing our “Snowbird” season, en route to our final Florida RV campground, we stopped at a USPS office to mail a package.  Another customer in line asked about my Stephen Ministry nametag. I explained that twenty years ago, I’d taken 50 hours of training to be a Christian caregiver. Now I’ve developed a website, www.yourexitstrategy.org to encourage families to start talking about their End of Life plans. I was blown away when he said, “I’ve already found the cheapest way to get rid of my body when I’m gone—I’m donating it to medical science.” Continue reading