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.