I Hear You Sister

January 24, 2012

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I was at my new favorite discount store, Nordstrom's Rack--or as I call it, the Crack, since I find the place so addictive--holding up a short, cranberry velvet jacket in front of my chest, looking into a mirror to try to visualize this jacket on me.

At the same time a nicely dressed older woman--maybe in her late 60's but quite good-looking, with not too much but just enough make up on to make her look appropriate for her age--was coming up next to me.  I didn't see her until I'd put the jacket down and shrugged a little, because I wasn't sure it was "me". I looked up and saw her smiling at me.  I took that as an entree to say something.

"I don't know," I gestured down to the jacket.  "I think it makes me look like a jester in the king's court."  She smiled and said, "it's a beautiful jacket."  I looked at it again--maybe it was a beautiful jacket.  Maybe I was in a fashion box--the same old, same old look.  What if she was right? I stood there for a beat--then finally put the piece down.  I really don't think cranberry velvet has any right hanging off my front.   Plus, it was kind of expensive--even on sale-- and if I was going to go out on a fashion limb, I wanted it to hit my wallet a little less hard.  

But that lady was right, it was a gorgeous piece. She was still standing there, so I held up the jacket and said to her, "It would look nice on you maybe?  We have the same coloring." She shook her head and smiled.  "I have BOOBS," she looked down at her front, "It wouldn't fit."

For a split second I thought, 'Oh my word does she know me? Does she know I have no breasts?' But then I saw her smile and her self-deprecating gesture toward her largely endowed front side, and I realized her comment was not about me.  It was about her. I smiled and started to put the jacket back on the rack, and as I did, she pushed her cart by me and added, "Boobs ruin everything."

Now I don't look like I have had a double-mastectomy-no-reconstruction: I just look like I'm small in the chest.  So she had no idea who she was talking to--me, the Queen of "boobs ruin everything." (Though of course I'm kidding because they don't typically ruin everything.  Hell, I loved my boobs, until they tried to kill me.)

But I wasn't going to get into a breast cancer dialogue right there in the clearance jacket aisle--there was shopping to do, fitting rooms to conquer and I wasn't about to ruin it all with cancer chat.  So I just took the irony for what it was--FUNNY-- and as she passed by me on her way to the shoe section, I replied with a good-natured laugh,

"I hear you, sister."

Fiji Magic

January 23, 2012

Reblog

Don't tell anyone at Fiji water that I wrote this, or else they'll start sending me free water and make people think I'm on the take..

but last week when I had my infusion, I drank Fiji water before my blood draw--the one that usually takes like 7 draws for them to tap my vein-- ..and she got into my vein on the first try.

Coincidence, right? That's what I figured. Yet as a human phlebotomy pin cushion I can tell you I am always the problem child in the chemotherapy room. Lord help me if and when I actually need real chemo. Right now I'm getting a bone strengthener drug instead, but I still need to get it dripped, or infused, into my aching arm each month. And trying to get that dang needle into my veined-challenged arm is hell on the nurses, the phlebotomists, anyone passing by who hears my whimpered cries, and on whomever has to pay for the 5 needles it takes before the sixth one goes in.

So, due to my strange and exciting Fiji water experience of the day before, I drank another small bottle of Fiji H2O on the morning of my infusion. But I went into the Infusion Center prepared to get poked. It can sometimes take upwards of 5 tries for the poor nurses to strike hemoglobin-gold with me. So I sat down, and the nurse got the needle out, and we both prepared for repeated failure... and she got it on the first try.

Not to be an undercover blogger/ Fiji water marketer--which I'm not--but honestly, I could be. Because that stuff saved my arm this month. Could I prove that in a court of law? Absolutely not. And speaking of proof, the real proof will be next month--when I try my experiment again. It may fail miserably--I may drink a gallon of the stuff and have nothing but track marks and a bad day to show for it. If so, there goes 3 dollars for a bottle of water.

But if it is a success, my non-aching arm will be reaching for the Fiji water on a monthly basis-- and I'll be and thanking my lucky stars I discovered that, for some reason, this South Pacific island hydration, collected and available on my grocery store shelf, is making a world of difference for one North American breast cancer fighter.

Great Labs

January 14, 2012

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Fresh off my high from attending The Global Leaders Healthcare Forum in SF this week, I woke up to an email from my doctor;

SUBJECT: Great Labs Yes!  

My tumor markers, which went up in November, have continued to go down.  This time by about 10 points--which wouldn't be such a big deal except that they'd shot up 50 points last fall and I was floored and depressed during the holidays.  Now they've gone back down, about 40 points last month, and today--about 10 more points--if  you do that Math--and please do because I s*ck at Math--this means I've gotten back what I 'lost' around Thanksgiving time and I'm back on the "Beat Cancer's Butt" trail.

What's the reason?  The cause?  I don't know--I really don't.  Yet I have to assume that the drug Zometa is at the heart of it.  That's the drug I get dripped into me each month at the Chemotherapy Infusion Center at the hospital--but technically Zometa isn't chemo.  It's a bone strengthener.  I'd stopped it in October due to a side effect and that next month my tumor markers shot up. So why is it helping me?  Who knows.  It could be that it sends out some message as it's strengthening my bones against any infiltration of the breast cancer now pounding my left lung, saying "and don't go over there, either."

Either way, it's working for me--this patient, this mother, daughter, wife, sister, cousin, friend--it's apparently keeping me alive. Which brings me back to the health conference I blogged from yesterday, and the big global healthcare question I took away from it all:  what happens when the price of a drug is deemed too expensive to keep on the shelf, yet that same drug is deemed critical to keeping someone alive for a few months, a few years, or more?  Who gets to decided what the cut-off day is for the financial effectiveness versus the human one? We don't know yet--though for the uninsured that day has already come.  

Yet for the rest of us--those who have insurance, pay our bills, etc.--we are potentially in that same "can I get the meds?" boat if one day an entity bigger than we are decides that a drug is 'too expensive' to give out.  Let's take Zometa for example:  what if.... I don't know.  

I just know that we'd all  best be paying attention to who, what, where, and when they--whomever they are--decide.

The Biggest Global Healthcare Question

January 10, 2012

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I started the day here, in infusion:

and continued it here, at The Global Leaders Healthcare Conference, where I was a table leader on "Patient Advocacy."

It was so very interesting to be in a room with people who, as far as I could tell, weren't sick. At least not terminally ill like (ugh) I am. I really liked it--not being the sick one, but the fact that any group is trying to get CEOs of pharmaceutical companies, medical professionals, health care advocates and a host of other interested parties together to talk health care SOLUTIONS.

I told the organizer that I'm in, that I'm happy to be involved in the next event--and the next, and the next--as long as the key element is dialogue, discussion and with any luck, dynamic ideas that lead to answers to some of the biggest questions out there in the health world--

like how to insure the uninsured?

how to get people the help they need without financially squeezing the system?

how do people find out about the best care they need when they need it?

and so on...and so on....and so on.

One of the biggest questions in my opinion, though--what I call the baseline question, the Q that's heard around the medical world--has everything to do with medicine but likely little to do with all those folks in that room: what do you do when a person is told there is a treatment that will elongate his life by say, 4 months--at the cost of, say, 90-thousand dollars?

I can do that Math and answer, "that's not cost effective." But I'm not a commodity. Yes I've got metastatic disease, but I'm also and more importantly a woman. I'm a daughter, a wife, an author, a mother, a writer, a breast cancer advocate.  What if someone some day is given the power to tell me I'm not worth the cost?

Someone has to pay for all these treatments--I know, I know.  And sure, 90K's a lot of dough--that's like what, 500 dollars a day at least spread out over 4 months time?  But what if that money gets me to see my daughter's wedding? My first grandchild?  My son's first heartbreak?  Braid my daughter's hair? How can some one else tell me I'm not worth my life any more?

I know it's easy for you--the healthy--to say, "but Ann.  You'd never pay 10-thousand dollars for a car that would--pardon the expression--die in 2 months, would you?"  And you're right, I'd probably never allow so much money to be spent on me for that short a time--I'm too frugal for that.

BUT what if I don't get to make that call any more?  And God forbid, what if comes the day that you don't get to make that call, too? (For the uninsured, it may already be here.) 

As a whole group--the global lot of us--those with OR without health insurance, the question of how much treatment-cost we as individuals are worth--is the biggest Global Health Care Question out there.

It's the big scary elephant in the global healthcare waiting room.

 

Blogging From The Global Leaders Health Conference

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So here I am, set up on the 11th floor of the Marine's Memorial Club in San Francisco, CA, USA--ready to meet the global leaders in health care. Who's got questions?  I'll ask em...

Where I'll Be Tomorrow--Sneak Peak

January 09, 2012

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Global Leaders Health Conference

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In this new year I am committed to getting out there. Whatever out there is.

I guess some would say I'm already out there, though not altogether in a productive way. Safe to say I don't care, and they're kidding, and it's all good-- still, I hope 2012 brings me many moments to 'get out there'--and do some good.

To that end, I have accepted an invitation to blog tomorrow from The Global Leaders 2nd Annual Healthcare Forum going on in San Francisco. I'll bring my age-old iBook G4, my pink purse stuffed with 'pink tips' books to hand out like candy, and myself. I've even agreed to co-lead a discussion table on patient advocacy. Who knows what the day could bring?

The brochure begins like this: Register today for The Global Leaders 2nd Annual Healthcare Forum focused on "Eliminating the Gap Between Innovation & Resources." The conference will focus on connecting CEOs and other senior executives with institutional investors and business development executives who can help bring the pieces together in a rapidly changing landscape. To request that a PDF of the conference brochure highlighting the days activities and speakers be emailed to you, email: jayme.porkolab@tgleaders.com

As I've never been to anything like this, I have no idea what I'll find. But whatever I find, I'll be blogging right here, as well as posting on FB and Twitter--so check in with me. It could be interesting. And if not interesting, at least we could cyber-hang in San Francisco together. When people ask you what you did tomorrow you can say, "I was in San Francisco, California, USA at the Global Leaders Health Conference with Ann Murray Paige."

How's that for "getting out there"?

'pink tips' Now Available for Kindle

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If you're like me you love your Kindle. And you love the cancer cliff notes, "pink tips". Well, get ready to merge!

Now the fast, funny and for real book on how to deal with a breast cancer diagnosis--or any big trauma in life--is available for download on everybody's favorite cyber-library, the Kindle.

To download 'pink tips' now, click HERE. Happy reading--and recovering--from whatever life's thrown at you. YOU CAN DO IT.

No Regrets

January 06, 2012

Reblog

The last time I was on a flight to the east coast in the cold was for my godmother’s 90th birthday party. I did that trip in secret, as a surprise, as a treat not just for her but for me–because she’s one of my favorite people on earth.

It cost money, time and all kinds of schedule rearranging for my husband and kids, but I did it–with my husband’s encouragement–because it was special, because she was special, and because, thanks to helpful friends and a husband with a heart of gold, I could pull it off.

This week I flew back for her funeral–she died last week after a steady decline–and while it is no shock for an elderly person to pass away, to me it still felt--and feels--like a sucker-punch to my body and my brain.

That’s the way grief goes, I guess. Though I should have been “ready” for her elderly self to let go of this earthly place, her death has juxtaposed this large gaping emotional hole equal in size and strength, I am guessing, to her importance to me during her life. Whatever this awful, suffocating feeling is that I pass through hour by hour, it seems nothing but my unending tears make it subside–though only for a time being. Within hours I’m back in that hole, crying more tears than I knew a tear-duct system could produce in a day.

But what I’m thinking about, and have been ever since that plane ride, in between breaks in tissue dispensing and hoping that woman next to me didn't call a stewardess for help with the weirdo in 6F–-is how glad I was to have gone to that party earlier this year. I know in the light of my godmother’s death now, that entire thought sounds obvious– but I could have skipped it. Nobody would have blamed me. I live far away, I have 2 kids, I have cancer, I have a husband who misses me when I’m not there. I could have passed.

And who’d have cared if I wasn’t there? Well,‘cared’ is too garish a word. Let’s just say nobody would have held it against me–least of all Darlin–if I hadn’t been able to come.

But sometimes showing up is the thing. And I don’t mean to suggest jumping on three airplanes and rearranging life to do it. Nor do I mean to attempt the marathon pace that my godmother did for me—cards, Christmas gifts, Valentine’s day, my birthday, you name it–she remembered it EVERY YEAR, since I was 0–(which puts her as the sole personality in my Godmother Hall of Fame, and I’m a godmother now myself.) But I’m often asked by people hoping to help the newly-cancer-diagnosed, “What should I do? how can I help?” My answer is always the same: “Just show up. You will never regret it.”

And while being there for someone else has been a good thing for the people in my life, it actually matters more to someone else. I’m not talking about the people I show up for, I’m talking about me. It matters for me. When I show up, however I do it– I’m not usually jumping a plane, more like an IDK or a TTYL <3 on my phone–I get as much love and gratitude back as I give. Touching base with someone doesn’t have to be long and involved–it just has to happen.

So, whether it’s cards, gifts, poems, phone calls, airline tickets, texts, celebrating the 9th decade of one of the most precious women to have ever walked through my life–or now, celebrating the life she led and all the love she gave me while she was here–whatever it takes, I try hard to just show up in my life.

So far, I have no regrets.

 

Good-bye

December 28, 2011

Reblog

This blog was written in October, 2011 and published today: it  is dedicated to my godmother, for whom it is written, and who died this week at age 90.

I don't know if you've ever said good-bye to someone knowing you'll never see them again?

I don't mean because you met them on plane and you had a great chat but you live in 2 different states 3 thousand miles apart with no real reason to ever bump into each other. Or when someone helps you pump your gas and you say "thanks" and they say "you're welcome" and you both say "bye"--- I don't even mean when you say "good-bye" and you hope you never see them again--like an old romance who broke your heart and you see them at a reunion and you wish you could duck under the table until the coast was clear.

What I mean when I say "saying good-bye to someone you won't see again" is the kind of good-bye that comes when you know that person is dying. And you know you won't likely be there in the next weeks or months when they finally say they're through with living in this world and they're ready to go on to the next.

I had this experience today. I had to look into the eyes of someone who means more to me than any other person in the world, save my own mother and father. I had to look into those beautiful, fading hazel eyes and squeeze her as tightly as her 93 pound body could safely handle and say good bye. And I have to tell you, it sucked. And before you say "oh goodness, why did she have to say the s word? Isn't that a little strong?" I have to let you know that I grew up a good girl, went to church every Sunday, was schooled Catholic and believe in God--but when I got breast cancer I realized that SUCK had a very important place in the English language, and it was right after the world CANCER.

So forgive me if you can--because today I found another place where that word goes perfectly--and it's right after that moment where you have to say good-bye to someone you love more than anything in this world.

This person I'm talking about is my godmother. She's been my godmother for 46 years. She's been my next-door-mother for 4 decades plus--she's helped me tie my shoes, changed my diapers, spoiled me rotten with colored balloons, cards on my birthday, LLBean fleeces, potted plants, and jewelry. She's called me, cajoled me, laughed with me, made me drinks. She's heard me cry, she's made me laugh, she held me when I cried, she hugged me when I hurt. And one very special day, in the sun porch of her home, she looked into my teenaged eyes and told me I was a star. And for some reason, I believed her.

And I've never, EVER, forgotten it.

On this last day I spent with my godmother there was drama---because we'd had a snowstorm and our neighborhood had lost electricity overnight. It was planned with her daughter that if the power went out, I'd go check on her mother/my godmother--whose name is Darlin--because at 90 years old and with congestive heart failure, she needs to breathe with the help of an oxygen machine. The machine needs to be plugged into electricity to work. If there's no juice in the wall, it stops working. And Darlin could stop breathing.

So it was planned, and it so happened, that the electricity DID go out--and I ran over to hook my godmother up to her battery-powered tank...so she could breath until the power came back on. I stayed the night, I pulled up a down puff and snuggled in the next bedroom--because my mother and Dad were safe next door but both Mom and I--and Darlin's daughter Marie--needed Darlin safe. I could easily do that if I just stuck around to make sure the air flowed. It was simple--as I said to Darlin, "we'll have a sleepover. Just like kids."

The next day, I had to pack my bags and ready myself to return to my home state--3 thousand miles away. Which meant I had to say good-bye to my godmother. I really didn't want to do that. Because in the past, every time I'd said good-bye I knew I'd see her again. My godmother is a strong, beautiful woman of grace and determination. She got her college degree in her 60's, lost her husband--my godfather--in her seventies, yet lived on and flourished as much as you can after losing your best friend--for 2 more decades. She took classes, she volunteered, she traveled. And I watched it all in awe. And I learned from her. I learned to keep going, keep swinging, keep living. And I, like her, never let life beat me down. After all, Darlin always came back swinging. And so, as I battle metastatic breast cancer, do I.

In these last years, when congestive heart failure stole my godmother's breath away, she hooked herself to an oxygen tank and arrived at cocktail parties, grandchildren's weddings and the cherished Maine beach her family visited all their lives--looking fabulous in outfits I could only dream of looking as good in. And don't even get me started on her matching shoes. And through it all I always saw in Darlin's eyes that desire to continue. And I was always--ALWAYS-- so thankful to see that.

But this last visit, I saw something else in Darlin's eyes. It wasn't exactly a choice to move on as it was a realization that it might be time. She was still smiling and still lovely, ever the hostess offering me coffee by day and cocktails by night--easily and graciously. But those eyes of hers told me a new story. They were silently saying to me, I'm getting ready to go. I confess to not looking too long into those hazel jewels because I didn't like what I saw. But I knew it was true. I knew.

The morning I left Darlin was sitting on her couch, breathing deeply from her oxygen machine, and smiling. She looked at me and laughed her Dorothea--that's her real name--laugh and, while not adding drama to the already theatrical oxygenated overnight we'd passed together, acknowledged the crazy night we'd spent. "Thank you for saving my life last night, Ann."

I looked at her beautiful face and saw way more than a woman exhausted from 9 decades of life on this planet and a scary, weird night's sleep--and I saw so much more than a woman I adored. I saw all the years she'd helped me grow, taught me strength, showed me compassion and told me I was a "somebody"--even in the moments I didn't believe it myself. I didn't see that I saved her life last night. I saw that she'd saved me in my life many times over. And I saw what I always knew to be true--that I was so lucky to have known her.

Which is why, as she claimed I'd saved her life, I replied immediately and without hesitation,

"And thank you, Darlin, for saving mine."