Posts Tagged ‘Boston’

Ann’s Diary: The Tunnel

They say the rise comes before the fall. I think that’s a real saying. Or maybe I made it up–but there’s a saying like that…

It’s the one that means “all good things must come to an end.” Or more colloquially put: “the fun’s over. Get back to work.”

I had what was clearly the most memorable weeks of my life last week, ending with watching live as the Red Sox, my baseball team, won the World Series at Fenway Park, and beginning with the Inaugural Project Pink 5K Run/Walk, where more than 600 people came together to support my non-profit and its goal of getting my book “pink tips” into the hands of newly diagnosed breast cancer patients all over the world. What fell between those two major events can be read here.

…but alas, today is a new day. And I’ve cried as much in the last 24 hours than I think I have in the last 3 months. So I guess I’m back to work.

The work for me of course is to stay alive. But that’s not the only thing I need to do. I also need to keep my ship on a steadier course than it’s been on the last 48 hours. Because the bitch about terminal illness, along with any other life-altering trauma out there, is that the world and its motion continues. Sometimes the motion is good, sometimes it’s bad, but regardless, it’s moving on–and I either keep up or I get plowed under, cancer be damned. People may think they know what I go through on a day to day basis, but they don’t. Nor should they. This ride I’m on has the ugliest underbelly I would never want anyone to see–because it’s the antithesis of positivity. It’s the root of all evil. It’s fear. Plus sadness. Plus terror. Plus implied defeat.

The brave stance I take every day in my battle, whether it be speaking at MIT, taking a spin class 24 hours after chemo, or finishing whole brain radiation treatments and walking a 5K, is really me. But there’s another part to me that exists. It’s the exhausted patient. It’s the please-no-more, WTF-with-this, what side effects NOW, and the when-will-this-ever-END part of me. And that is the private side of trauma.

Believe me, nobody who goest through Hell like I do and is a warrior in their lives has a clear slate on the tears-fallen-this-month chart. We all cry. It’s why we have the physiological ability, I assume: let it out so it doesn’t take you over kind-of-thing. I don’t advertise it in my day-to-day life because that’s not the whole of who I am; in fact it’s not the half either. It’s more like the sliver of the pie that sits in in the Thanksgiving tin until somebody, or something, comes along and scoops it up and swallows it.

And on its way down they feel it. In pumpkin pie’s case, it tastes good. In the emotional world of a trauma fighter, it can lodge in my throat like a full-grown pumpkin. It can come close to stealing my oxygen from inside myself and this past weekend it had me curled up in the fetal position with tears streaming down my face, thinking “What the F-ck did I do to deserve any of this.”

Which is total backward motion. And I am not a backward motion kind of a girl. I’m about being in the moment, learning from what I’ve done that either worked or didn’t, and moving forward. At least, that’s who I am mostly. And then there’s that sliver of pie left in the tin…

Before I leave you with nausea thinking of this month’s Thanksgiving dessert table–or get sued by the Pumpkin Patch People of America (just the stress I DON’T need but as the world moves on, 10 to 1 I’ll get an email), let me tell you what I told my dear pal who texted me today, sharing a wise saying from her mom, who died of cancer. It said something like “accepting that you can be vulnerable and sad makes you brave.”

And I responded, yes, that is true. But some days I am so tired of being brave.

But I also said this: I know I will get through this. I have had (too) many moments like it already to believe anything less. But you can’t get to the other end of the tunnel unless you go through it first.

So folks, I’m in the tunnel.

But I’m on my way out of it, too.

Posted November 4th, 2013 by
Ann's Diary: The Tunnel

Ann’s Diary: GET OUT

The last three weeks have been a bit tough–but I’m still here, punching back at the new bag of tricks that breast cancer has left at my doorstep. And today, Halloween, may just become my new national holiday as my life continues to morph into one of those strange slasher movies where the “call is coming from inside the house.”

Or in my case, “the body”–my body. This damn cancer doesn’t seem to get the memo. I want it GONE. To steal a line from the great David Ortiz of the Boston Red Sox who, after the 2013 Marathon Bombings, said to the ballgame crowd “this is our f-ing CITY!”; I say “this is my f-ing BODY.” GET OUT CANCER.

I’ve had 9 of 10 whole brain radiation treatments these last two weeks. I am due for my last one today–again, on Halloween, how appropo. But before you think I’ve gone all anti-treatment, let me tell you I feel quite the opposite. I feel incredibly lucky to have the machines, the treatment options, the medical people, the health care and the opportunity to use those things–along with my own fighting spirit–to continue to beat this cancer beast at its own killing game.

The whole brain treatment thing has gone well. There were side effects that I kind of avoided–not all, but most. And the way I did that was by thinking that wouldn’t happen to me. There’s really no “secret.” I don’t have a magic lasso. I haven’t been hypnotized (though I just got word it may work so what have I got to lose?) I’m just deciding that I can do this. So I do.

I have really focused on anti-cancer nutrition and I’m continuing my exercise. I figure if my body is taking on all these toxins to kill the ultimate toxin inside me, I gotta give it some help. I can’t be chowing down chips and soda and junk food while my little body is pushing back at cancer. I gotta help it out. So I have my nutritionist (aka my friend who knows all about this stuff) make up recipes for green smoothies and added proteins that work work with my specific diagnosis. I have my doctor on board watching and listening and telling me when to go for it and when to reel it it. And I have my trainer/best pal helping me keep my body strong. Boston Strong. That’s how I’m rolling these days. And I’m doing fine.

So fine in fact that this past Monday, after what should have been my last WBRT but the machine wasn’t working (kick it!) I hopped a plane to Boston, MA. I was invited to speak at the Koch Institute at MIT and at Infinity Pharmaceuticals, both in Cambridge, MA. The point of the MIT speech was “Women on the Front Lines Fighting Cancer”, and the Infinity speech was about rallying the research troops who work so hard every day trying to figure out the cancer b#tch and who, understandably, can become disillusioned as the beast continues to elude them.

I was beyond honored to be at both places. To be able to have people hear me say that what they do is critically important to me is a gift I am grateful for every day. Especially to my Infinity peeps: who make a difference in peoples lives that they’ll never know simply because they’re trying to help us beat cancer. I wanted to put at least one face to their progress and remind them that even their research “failures” are actually future successes. Because when we find out what doesn’t work, that adds a crucial piece to the puzzle that ultimately becomes the answer of what DOES.

Oh–and then….on a huge lark, a visa card, and a “what the hell are we waiting for” move, my husband and I–on the prompting of our extended family, took a chance and bought World Series Tickets to Game 6 at Fenway. You see, I’m from Boston originally. I went to Boston College. Get me angry or tired and the accent shines through. And the Red Sox are my team.

And they WON. The World Series, 2013. At home. That hasn’t happened since 1918.

To add to my magical trip: a chance encounter with my cousin Peter in a city of thousands–a cousin I spent every holiday with as a kid but as and adult haven’t seen in 16 years. A walk near the Charles River with my dear sister/friend who has roots in Boston, too. A chance to spend time with my 87 year-old mother, my oldest sister, and a sister I haven’t seen in more than a year. A serendipitous business trip that my husband had so we were able to be together on this trip.

And the best part of it all for me: time with my Dad, whom dementia has stolen from us. At least in memory. But Lord not in spirit. This man, who was a tough dad growing up, now tells me I’m beautiful every chance he gets. He thinks my teeth “are the most gorgeous he’s ever seen.” He may not know how he knows me but he is never afraid of me. We can still share a laugh and a beer together. Talk about Boston Strong. That man is my hero. Forever.

As I sat in the right field bleacher seat and watched the Red Sox win the world series last night, I already knew they were going to win before it started. Not because I’m talented at guessing, or a follower of stats, or a Monday morning quarter-backer. It was because I knew my dad, were he alert and able, would have loved that game. Would have been sitting in “his chair” at home rooting for HIS team. To be honest, I’m not sure he “saw” the game last night. I do know the nursing home had the place decked out and all “clients” where going to be ON DECK, in wheelchairs, walkers and wing chairs to watch the game on TV.

My Dad would be among them–making jokes, covering up his embarrassment at forgetting by creating a humorous distraction and putting the staff in stitches. Whether he truly got what was happening–or for how long–I can’t say. But who cares? He was safe, he was cared for, and knowing him he was making jokes. That’s how he rolls in his dementia: he’s hilarious. He keeps us in stitches and helps re-root some of our sad tears into laughing ones.

So to the Boston Red Sox I say: well played, my team!

To my father I whisper: you were with me at the game, Dad. I knew they were winning it. For you.

To MIT/Koch Institute and to Infinity Pharmaceuticals. ROCK ON. You will figure out cancer. I have no doubt.

To my husband, you are my rock. I love you so, and forever.

To my peeps–who either came in from parts unknown to hear me speak or who surprised me and hopped 4 planes to come out from NORCAL to watch me work–YOU RULE.

To all of you all out there rooting for me: THANK YOU. I love you, and your support, like nutrition, exercise, meds and doctors, is making me live.

To Boston: you’re my home.

And to cancer: This is my f-ing body.

GET OUT.

Posted October 31st, 2013 by
Ann's Diary: GET OUT
Posted in: Ann's Diary, News

Ann’s Diary: Not Dead Yet

The recent news on my cancer isn’t good.  Apparently I have several tiny tumors all over my brain.

Now before you start buffing my headstone, let me tell you this–I ain’t going nowhere.

But to face this news after all I do to beat off cancer –chemo, surgeries, pills, vegan, no-dairy, no sugar, exercise, acupuncture–is of course a huge blow.  And I am trying to catch my emotional breath this weekend so I can face the next phase of this fight for my life.

But here is what has been the most devastating part of this latest news:  every one else’s fear.  I literally can see it in everyone’s eyes.  And they have every right to be frightened.

My friends range from teachers to trainers, doctors to dentists, business people to buddhist and all points in between.  And let me repeat myself: every single one of them has every right to be scared as hell for me.  This kind of a diagnosis–the one I’ve been battling for 9 and a half years now–brings out the fear in everyone.  They don’t want to lose me.  They don’t want to see me diminished physically by treatments.  They love me and want me to be safe and well again.  And I love each and every one of them for that–and so much more.

But here’s where it gets dicey:  because this kind of situation forces folks to choose which side of the medical line they believe in.  Is it all about the statistics?  Are the journals of Scientific blah-blah the end point in deciding Ann Murray Paige’s fate?  If so, I’m dead. Literally, I won’t make it.  Draw the curtain. Turn out the lights.  Poke a fork in me: I’m done.

And if you’re me, you don’t ‘t go there. Really, would you if you were me?  “Oh shit, they say this is the progression, and it’s just a matter of time.  So I’d better believe them and start to fade now.”  So that…so that…so that–what?  What is in it for me if I go that way?  It’s the equivalent of putting an emotional gun to my head and pulling the trigger.  Why the f–k would I do that to myself.

I have to remember: “they” said chemo would give me neuropathy and exhaustion. If  I recall correctly, and I do, since St. Patrick’s Day weekend I’ve done chemo on Tuesdays and spin class on Wednesdays.  I worked out Mondays and Fridays.  And I worked Tuesdays and Thursdays.  Occasionally you’d seem me in a Sunday a.m. spin class, too. I do round 27 of Taxol chemotherapy this week, that is after my personal training appointment tomorrow. So, I ask myself, where’s THAT statistic factored into the medical prognosis of Ann Murray Paige?

Within a few weeks I have to have this thing called “whole brain radiation” which, according to “they”, could give me all kinds of side effects ranging from fatigue and permanent hair loss to what I can only describe to you as that lobotamy patient from the Planet of the Apes, the Roddy McDowall version.  5% of cases become dementia, so I’m told.  I don’t know that for sure because I didn’t look at that statistic.  And frankly I don’t want to know side effects because something about knowing about them invites them into my mind as a possibility. And my mind’s door must be LOCKED to that.

Believe me, I don’t want to fry my brain in that machine, either.  Trust me, I don’t. But honestly–I don’t have much choice.

My doctors–of which I have three, and on 2 different coasts–all say this is the way to go.  So I am going.  And this isn’t the time or place for radical thinking–I’ve done that already. I went vegan. I take vitamins. I’ve tried Graviola. I’ve meditated, prayed, avoided dairy and I am about to try juicing. But that’s it. I’m not open to coffee enemas or Texas-based therapies that are, depending on which article I read, on the spectrum of miraculous to strange. I am so sick of fear I could throw up. And speaking of fear, the Internet and many of its “cancer cure” websites are full of fear. “If you don’t do this, you’ll get that”–as if any institution takes into account every body type, personality, physical profile and age. As if every individual in the world could be saved by the exact same thing.

One of my pink tips is “beware the Internet” and it’s true.  There’s no room for individuality there.  And that’s the secret weapon I have in this fight against cancer, what I have in my corner that nobody else has:  I have ME.

My “people” are now asking me what I need from them.  Dinners?  Grocery runs?  A stiff drink? (yes to that last one.)  Here’s what I need from you: I need you to believe in ME.

Even if you go to the worst case scenario and I don’t make it, what’s the harm in believing in me now?  There is no preparation for losing someone.  So cross that off your to-do list.  When it happens, whenever it happens, it’s horrendous.  Nothing you do now, short of un-friending me, helps.

And I’m not gone.  I’m still here.  As my demential dad used to quip when everybody treated his aging body like a china doll, “Hey, relax. I’m not dead yet!”

Nobody knows what’s going to happen to Ann Murray Paige in this fight. So believe in me. And we”ll see what happens–together.

Posted October 13th, 2013 by
Ann's Diary: Not Dead Yet
Posted in: Ann's Diary

Ann’s Diary: Chemo Strikes

I remember when Peter Jennings was diagnosed with lung cancer and had to leave ABC World News Tonight. I remember that like it was yesterday because I, who’d been fighting breast cancer for one entire year at the time, thought “OMG–cancer can get Peter Jennings?”

Having been a news reporter, I felt Peter Jennings was like the Pope to my Catholic mass cantor. Or the Supreme Court Justice to my paralegal status. He was the big dog and I was the runt of runt of the runt of the litter. He was Peter Jennings, the world famous news journalist and anchor! And there I was, having only ever been a piddly bureau reporter from tiny Lewiston, Maine.

And when he died–just 4 short months after his public diagnosis–you can imagine what I felt.

But what I want to mention today is Peter Jenning’s cancer blog; notes he took while he was battling his battle (which I wanted to link here but I can’t find online anymore.) And why I’m mentioning that is because I remember a specific line he wrote when referring to chemotherapy:  he said something like, “I try to walk across the room and then–I can’t. Chemo strikes.” He meant the exhaustion–the feeling like you’re not you, you’ve been squeezed from the inside out and you’ve got nothing to give, you gotta lie down…like all day long.

I’ve been thinking of the “chemo strikes” line all this week because chemo struck me this week but HARD.

I’ve had 10 rounds, one per week, of a drug called Taxol to help beat off the cancer in my lungs, liver and brain (and it’s been working!) and I’ve been lucky enough to not have the usual side effects.  I’ve worked out, run errands, been out with friends, traveled with my family–in short, other than the no-hair thing I haven’t behaved, looked like or felt like a stage 4 breast cancer patient in the least.

So last week (and in truth–the two days prior to my departure for the one-hundred 2 weeks ago) when I started feeling like I’d been run over by a truck, I thought I was sick with the flu or something.  Turns out it’s the side effects of chemotherapy finally catching up with me.

Here’s the thing: when I don’t feel sick, I don’t think that I’m sick.  Like before I lost my hair people would look at me working out or doing my usual strong thing and think, “she can’t be sick!” and I’d think, “yeah, I can’t be sick!”  Then my hair fell out and I looked sick, and people started treating me like I was sick.  Which, excuse the term but it fits so well, sucked.

So here I am looking AND feeling sick…and it double sucks.  I just hate this.

But I love the chemotherapy–I love that fact that after 10 rounds it’s beaten this beast down 2/3rds of the way–my tumor markers are almost 70 % less than what they were in April.  Ya-freakin-HOO!

But the emotional markers–the ones that gage how I’m doing in my mind as I work to get this body healthy–those have taken a hit with the side-effect-situation.

I will get used to it, I will.  For me it’s always about diving into the new stuff and finding a way to come to terms with whatever it is that’s happening that gets me through. Whatever the latest cancer crap is I can bear it after I take some time to chew it over, shed some tears, throw a few plates, take a breather–

then I get back in the game and push on. I did work out this week, by the way–and I will continue to; but my energy is half what is has been and my extra mojo is missing.

Feeling sick blows, whatever your problem.  And when it comes to chemo, people like Peter Jennings, everyone at my infusion center and the hundreds of thousands of cancer patients across this country and around the world know just what I’m talking about.  “Chemo strikes” and when it does, it knocks you down.

But then again, like they say in the sports world, three strikes and you’re out, buddy. Chemo may have me on the bench now but that will change. So take your best shots against me, chemotherapy side effects– because I warn you, I’m winning this game of life.

I’m winning it.

 

 

Posted June 17th, 2013 by
Ann's Diary:  Chemo Strikes
Posted in: Ann's Diary

Ann’s Diary: The One Hundred Event: Part Three

As I continue to write about my experience at the one hundred event in Boston on June 5, I get this overwhelming urge to don the persona of a Valley-Girl-Cinderella blogging about the ball–

Oh and there was this handsome prince and this beautiful other princess?  And they stood up for cancer on the red carpet?  And then, and then–there was this amazing rocker and his beautiful wife?  And there was a funny, handsome older man and his gorgeous wife whose son is a major film star?  And like, there was me, cuz POOF my Fairy Godmothers had dressed me up in a couture dress and a platinum wig and pushed me into the center of it all? Like, OMG!”

I had such an amazing time on so many levels at the one hundred that the entire night just blew me away.

First there was the venue. When I walked in early to practice my speech along with the other speakers I was almost knocked down by sophistication and elegance.   Rafanelli Events out of Boston put on the “show” in the ballroom at the Westin Waterfront and they knocked it out of the park.

Then there were the one hundred themselves; the 99 others whose actions, from collecting pennies to playing baseball for breast cancer awareness to bringing a dying college student his diploma hours before he passed away. These selfless people whose one goal is to make the cancer journey easier to bear for those of us on it: there they were, real Cancer Kicking Celebrities.  And I was one of them.

Of course, there were the other “Hollywood” celebrities, too:  

Tom Hamilton (my MAN) of Aerosmith. Kent Damon and his wife Celeste, whose son is actor Matt Damon. (no photo yet–Mr. Damon used his own cell phone.  Now how’m I gonna get THAT copy?)

 

 

Actor John Krasinski and his beautiful actor wife, Emily Blunt…

Howard Weinstein, Unit Chief of MGH’s Pediatric Hematology and Oncology (with me and my sister, Ellen)…

 

but the TRUE CELEBS?  THE ONE HUNDRED THEMSELVES…

 The ages and stages of the close to 1,000 people sitting at multiple tables of 8 in the Boston Westin Waterfront ran from the healthy to the sick and spanned from the single digits straight up to 96 years old (that was T. Berry Brazelton, the famed pediatrician.) Some were young and never had cancer but were standing up for someone who does: others had cancer and were fighting back. Still more were working to end the dreaded disease, and others were there to shine a spotlight on the cause. And these special folks were all brought together  for one magic night to revel in the fact that they make a difference every day in the fight against cancer.

And of all of those there, this Cinderella–seen below with my mom–had to have been one of the happiest princesses at the one hundred ball.

Posted June 12th, 2013 by
Ann's Diary: The One Hundred Event: Part Three
Posted in: Ann's Diary, News