Eight Years Today

Eight years ago today I had my breasts removed and replaced with newer, better models. They looked perfectly round, pert, young, and ready to rock and roll. So what if they were numb; no more boring bras, mom jeans, or swimskirts for us! 

It wasn't all vanity and play: with pen and telephone we encouraged the sick and scared, and battled the pink beast.

We had a pretty good run, me and my noobies. At the five year mark my blog featured a woman poised on a mountain top,  basking in her conquest, with higher peaks beckoning. Not satisfied to rest on my NED laurels,  I declared that I would keep on fighting until the world is cancer free. And I meant it.
I was naive.
Zealous, sincere, but naive.

From that lofty vantage point, I could not see my future, that my path would lead back down the mountain to where I began.  Something was wrong with me: my balance faltered, I got dizzy and fell several times a week. I fell off my bike twice, into traffic. And my memory sucked more than ever.

Of course my first thought was that cancer had spread to my brain. That was the first thing we tested for, and ruled out.

A battery of tests revealed all was normal except for nerve loss in my feet and sleep apnea, both of which are curable. My world became very small as I focused on increasing strength and reducing stress. A few weeks of a walking regime improved my energy and balance--I have not fallen in months. I am in Phase 2 of vanquishing sleep apnea. After failing abysmally with two CPAP masks I am optimistic that an oral appliance will do the trick. 

Most significant of all the cures is what I have stopped doing. Last year I gave up social media for lent and realized I had no desire to pick it up. I missed connecting with friends, but did not miss deadlines and Google stats.  Finally, last summer I surprised myself and decided to close my counseling practice. I closed the doors in September.  

Retirement takes getting used to--slowing down takes practice, but is well worth the effort. I have not abandoned all of my breast cancer work, but now confine my efforts to our local non-profit in my small, under-served county. 

I might have more hills than mountains in my future, but my race is not over, and the fight will never end--just lower and slower.

After all, it's been eight years and I am still here.

Grief In Verse

A Dear Friend Died Yesterday

A dear friend died yesterday. 
We went to say our last goodbyes and I-Love-You’s
But he did not wait.

It was okay
Because we had not waited until the last minute
Thinking we had tomorrow for those words
We always wanted to say
Meant to say

But never found the right moment for
While we had him with us
Sometimes only inches away
Last words floating into forever.

Having the last word means, “I won, you lost,”

When we think we have tomorrow.
But when tomorrow is lost
We think back to the last time we met
To what we said, with sorrow
Sometimes regret.

Had we known, we never would have said
Or left things unsaid.
If only we had known!

But all we know is that we do not have tomorrow

And we know that
bitter and sweet
Words last.

A Big Thank You

Recently I unplugged from social media during Lent. Six weeks is a long time in internet years, so I did worry about being obsolete when I returned. 

I swallowed hard, signed off, and took the risk anyway.

The next day I learned that my blog had been selected as one of Empowered Doctor's Top Breast Cancer Blogs.  I was overjoyed, 

And super relieved. 
Empowered Doctor is a news affiliate of The Chicago Tribune, Arizona Central, and CBSNewYork,  providing their websites' health sections with the latest advances against cancer:  their endorsement is a huge honor. 


So, for this vote of confidence I send a big . . .

 

Practicing What I Preach

I sincerely believe in my byline "Health From The Inside Out" and so for consistency's sake I am unplugging from social media until after Easter--you might say I am writing off blogging for Lent. One way I try to keep my life in balance is with travel and so I will share one wonderful adventure I had in Italy last year. I hope you enjoy it!

Italy, After All

We were doing our favorite thing when we travel, strolling.  It’s different from walking, which is too fast and usually implies a destination, or at least a direction. 
 
No, strolling must be slow and meandering enough to allow us to link arms and pivot deftly to stare at delicacies in a bakery window, or to sniff out an alluring aroma from an unseen gastronomia. Trays of olives in oil, salami sliced razor thin, focaccia, pizza, and those spongy pillows of deliciousness, fresh mozzarella.  
 
Aimlessly drifting like fishing nets to catch whatever delights that come, we ambled with hearts open wide to Ligurian enchantments , made endearing by the sharing.  Our eyes danced from side to side, marveling at the buildings splashed with the burnt colors of Taos.  
 
We delighted at the ubiquitous laundry hanging from windows framed with shutters the color of girl-scout uniforms.  And we laughed out loud at the sight of a yellow lab poking his head through a hedge implausibly growing on a rooftop.
“He seems to be surveying his domain,” Doug said.
“Perhaps he is the K-9 officer, keeping the streets of Nervi safe,” I chirped, and we moved along, loving Italy.
Wandering through a narrow alley an aroma stopped me in my tracks.
“What is that smell?” I gasped.
Doug said, “It’s probably dog poop.”
I said, “On the other hand, it could be cheese. This is Italy, after all.”

Why Breast Cancer Still Matters AFTER October

 

30 DAYS, 30 REASONS

The Pinktober frenzy has settled like confetti, meanwhile 108 people die every day from breast cancer. For thousands of women and men affected by this disease, breast cancer is a harsh reality 365 days a year.  The ARMY OF WOMEN and The Dr Susan Love Research Foundation are here to issue a month long reminder that breast cancer still matters. Every day throughout November, their blog will post a new reason to continue the focus on finding the causes of breast cancer. As a proud member of the Army of Women bloggers I will help spread the word here.

1. Because the goal isn’t the cure, it’s finding the cause and stopping it. More: #30reasons
2. Because this is not the legacy we want to leave our daughters. More: #30reasons
3. Because a daughter deserves a life with her mother. More: #30reasons
4. Because nothing much has changed. More: #30reasons
5. Because breast cancer is not sexy. More: #30reasons
6. Because we made a national commitment more than 40 years ago. More:
7. #30reasons
8. Because the misconceptions will astound you. More: #30reasons
9. Because a husband shouldn’t have to say goodbye. More: #30reasons
10. Because we need to refocus research. More: #30reasons
11. Because living with a cancer question mark hanging over your head isn’t easy.  More: #30reasons
12. Because our current methods come with a cost.  More: #30reasons
13. Because your participation is key and you have the power to help scientists.  More: #30reasons
14. Because awareness isn’t enough.  More: #30reasons
15. Because breast cancer does not discriminate. More: #30reasons
16. Because pink should just be a pretty color. More: #30reasons
17. Because we can wage a better, smarter war. More: #30reasons
18. Because it’s hard to make individual decisions. More: #30reasons
19. Because you don’t need to have cancer to participate in cancer research.  More: #30reasons
20. Because your health information could be the answer.  More: #30reasons
21. Because fighting breast cancer is a team sport.  More: #30reasons
22. Because far too many know the loss of a best friend.  More: #30reasons
23. Because breast cancer changes lives.  More: #30reasons
24. Because we just don’t know enough.  More: #30reasons
25. Because unlocking the mysteries of breast cancer will help put an end to other diseases. More: #30reasons
26. Because it’s unacceptable to watch more than 280,000 get diagnosed every year.  More:  #30reasons
27. Because not everyone is a survivor.  MORE: #30reasons
28. Because the causes remain unclear and we need more research.  MORE: #30reasons
29.  Because breast cancer isn’t a one-size-fits-all disease. More: #30reasons

Stanford Medicine X Magical Mystery Tour: Shock & Awe

In my opening blog I admitted that I had no idea what to expect at Medicine X, but that Stanford was working its magic on this hometown girl.  After three days basking in the glory of unforgettable people, brilliant inventions (scan the QR code on my badge!) and collaborative genius, I was rendered speechless for a week. 

In fact, as a Licensed Psychotherapist I invented a new syndrome for the DSM-V: Post MedicineX Bliss Disorder, caused by information overload, brain-drain, and oxytocin induced euphoria.  
 
Seven days later I have not recovered entirely, but will do my best to share some of my favorite parts in Jackson Pollock splatter style. 

Fascinating Factoids, Memorable Moments, Quotable Quotes

I'm not self-tracking for myself; I'm self-tracking for the next person." @seanahrens

By self-tracking Allan Bailey learned that adding butter to coffee keeps his blood sugar from spiking. ‏@zirpu

 

Doctors more open to our data if our charts are simple @katiemccurdy

 

 On shifting doctor/patient roles:

Wrong to assume that patients want to know only what doctors want to explain. ~Susannah Fox  


Physicians no longer control information" - @Doctor_V

 

 

  "I just want to work with a doctor who will believe me" @katiemccurdy

 

 

 

 Michael Graves, architect,

 paralyzed from chest down by nervous system infection.

His room had a mirror too high, faucets and electric outlets out of reach! THINK OF IT: Hospital rooms without handicap access!

Graves used self-deprecating humor as he faced tragic illness,  "This hospital room is too ugly to die in." NOW redesigns healthcare facilities for PATIENTS first!

Safety, comfort for patient: to prevent infection use a simple disposable cover over the TV remote control.

Regina Holliday uses her art to tell the all-too-familiar tale of patients unable to get their own medical records

THAT IS REGINA BEGGING FOR HER HUSBAND'S RECORDS courtesy of Regina Holliday

Regina, you are force of nature!

TECHNOMAGIC

Blood sugar monitor app for smartphones 
Hospital gowns made of smart material that monitors 
vital signs @wearabletech

Everyday clothing with technology built-in without losing comfort and fashion. Sonny Vu

The ICD is "defective by design" data goes to everyone BUT the patient!  Hugo Campos

One million patients with remote monitoring by manufacturers: not ONE PATIENT has access to own data! Hugo Campos

Closing thought:
There is a tension between the power and potential of technology in health care and the essential need for human engagement.  It may be true that, "Health reform is just not possible without technology" (Louise Schaper), but all of the tracking and technology still requires human interaction for full effect. 

MedicineX HMS Mindblower

It is early Sunday morning; my tinnitus sings like the buzzing of a summer night, and my eyes ache for a caffeine bath.        

I am trying to gather my thoughts in the calm before the whirlwind called "Day Three of MedicineX" scoops me up and flings me into the magnificent maelstrom of genius ideas, poignant e-patient stories, and inspiring calls-to-arms.  

I wonder if my brain can absorb more wonderfulness without making my head explode.  Perhaps if I share a dollop of this experience with you I will make just enough room for more. 

 First night tweetup with me, Alicia, and Liza

@ibeatcancrtwice @stales @itsthebunk

 

 The Walking Gallery

Project by Regina Holliday

 Regina at work.

 Story of my life: Regina nailed it!

Change Is In The Wind

by Regina Holliday

 Off to breakfast with @stales. More to come!

RESCUING PINK: The Color, Not The Rock Star

October is just around the corner, its brilliant foliage a harbinger of autumn--of grape vines heavy with purple clusters, of brisk air, apple farms and hot cider, of pumpkin fields and Halloween. 

In recent years October has signaled a different kind of season, with its own signature color and cornucopia: store shelves bulging with beribboned stuff, pink festooned windows and football fields with pinked-out athletes; garbage trucks, toilet paper and  COFFINS.

 This one has 30 pairs of breasts painted on it.

All in the name of breast cancer awareness. Machine guns have awareness ribbons!  

Oh, and kitty litter, so our cats can be aware.

Such crass profiteering from what remains for thousands a deadly disease stirs a tumult of feelings in me, from fury to embarrassment to despair.  

Meanwhile sincere, well-meaning citizens who donate time and money are lulled into thinking that their contributions make a real difference--like ending breast cancer in this century.  

Many breast cancer activists like me are appalled by the growing evidence that garish fundraising tactics serve only to line corporate pockets. We have watched our sisters-in-arms die of metastatic breast cancer. 

Demoralized by these losses, the troops voices have grown more shrill in an effort to be heard over the cheers from Celebrations of Breast Cancer.  The screeching sound of impotent rage grates on everyone's ears ,and might even alienate the very people we want to help. 

To combat this sad turn of events, I will attempt to rescue pink, for it is a perfectly innocent color that was co-opted by the awareness movement because it traditionally symbolized wellness, e.g., 'in the pink of health."  That is why I named my website "Stay In The Pink", because it married the old meaning of pink with the breast cancer ribbon. Unfortunately the exploitation and scandals in the awareness movement have caused me embarrassment with my own website.

So rather than hide my brand in pink-phobic shame I will do all I can to turn the anti-pink tide.

After all, what did pink ever do to me to deserve my wrath?