Posts Tagged ‘young women and breast cancer’

Ann’s Diary: Uncle Phil

I was talking with my girlfriends the other day when one of them said, “we never said ‘I love you” growing up in our house”. I sat there and thought, “huh: we kinda never did either.”

It was the sign of the times I suppose– a 70’s kid being raised by someone born in the 1920’s, at least in my house. My assumption is that it was implied: I’m your parent, therefore I love you. And I’m sure I heard it a few times, it’s just that my memory doesn’t remember that far back. I would say it to other people, though– as a kid you do that. Or at least I did that. But in the general family, it wasn’t the norm to leave off a phone call and say “love you.” We just weren’t like that.

What I can remember is bringing the spoken form “I love you” into my life–full force. I was probably 15, and we’d just come back from a Murray Family Reunion. My Dad had 7 kids in his family originally, and I think there were 5 of them there. With their kids…and their kids…it was a mini-family circus under a beautiful sun. I for one had a total blast. When it was over, we headed home to my family’s house about an hour away, bringing my Uncle Phil and Aunt Anne Marie with us. I loved all of my uncles for different reasons. With Uncle Phil it was his amazing humor. He had me laughing a mile a minute. I can still see his blue eyes shining and twinkling as he’d make a joke or pull a stunt on me and my sister. He was pure fun.

The night we came home from the family reunion, we all gathered in the living room to watch old family slides. (Kids: those are stamped-sized photos on film that need to be splashed on a wall with a light and a really good magnifying machine called a projector.) We’d ordered pizza, and we were all laughing and joking, when Uncle Phil made fun of me in one of the photos. I don’t remember what he said, all I know is in my teenaged angst and anger at being made fun of, I simply stood up and stormed out of the room. Everyone called for me to come back, including Uncle Phil, but I tossed my hair and went straight to bed. To Hell with them, I thought, this will teach them. I’ll just leave! And I headed off to bed.

A little time later, I was awoken by rattling sounds coming up the stairwell. I jumped out of bed and looked outside into the bright hallway to see EMTs taking my precious Uncle Phil away on a stretcher. He was alert but breathing hard from an oxygen mask. I was crushed and my parents were trying to keep my in my room until the EMT’s left. It was the worst night of my young life. I have tears in my eyes as I write this—about 3 decades later.

I awoke to the news that Uncle Phil had died of a heart attack overnight. And I knew what I’d done. I had left that group of fun and family frolic: tossed my hair at them all because of something silly. And now Uncle Phil was dead. And his last words he ever heard from me were some fitful stupid teen blather–and now he was gone forever.

About a week after the funeral, I knew I couldn’t get Uncle Phil back, couldn’t change what I’d done…..but I could START doing something new. And from then on, any time I got on a phone with someone in my family and the call ended, I’d say “love you.” I will never forget the awkwardness in speaking those words–and wondering if my parents would think I was a weirdo. The first time I said it to my Dad, to end our phone conversation, there was absolute silence. I almost felt bad for springing it on him. Eventually he murmured an “.uh….okay”. And we hung up.

I’m happy to say I’ve kept up that tradition for more than 30 years of my life–and almost always when I whisper it, or shout it, to someone dear to me I take a moment of thanks and gratitude to my Uncle Phil, who in leaving this life for the next taught me a lesson that has made my life richer and fuller than it ever could have been otherwise.

Thank you, Uncle Phil. I love you.

Posted February 22nd, 2014 by
Ann's Diary: Uncle Phil
Posted in: Ann's Diary

Ann’s Diary: The Weather

I’ve been a bit under the weather and not able to write; but here I am to check in on how life’s been for me lately.

It’s been a drag.

Which is why I haven’t written–I’m not big on complaining here at this blog. It’s depressing and it doesn’t make me feel strong. But to ignore this part of the journey would be inauthentic, really–it would be passing over the incredibly difficult part of being a cancer patient: the treatments that don’t work. And that’s why I’m going to give you a quick sketch of how things are right now for me.

After I spoke in Boston in October, I went to Hawaii with the blessings and the gifts of dozens of friends from my world who fundraised their backsides off to get me and my family there. We had a great time; scuba diving, helicopter rides, safaris and the like. When I came back, I started new chemotherapy Xeloda (the Taxol chemo I was on had stopped working.) I was due to have 3 rounds (2 weeks on, one week off) and then see how the drug was working. The problem was, I felt like junk every day. I mean don’t-get-out-of-bed, no-interest-in-the-gym, I-can’t-eat kind-of thing. It was the antithesis of who I am: like someone transplanted me right out of myself and threw in I-don’t-even-know who. What character in TV, movies, books never wants to get out of bed? That’s who I was. And I’m afraid to say still am.

It got so bad that I, a cancer fighter, one who knows that you only have a certain amount of chemos to work with before you run out of choices, had to call “uncle” on the Xeloda. It was the worst feeling of my life: literally taking the medical reigns from my oncologist and saying “no more. I can’t handle this.” But on Dec 23, that’s what I did. And the chemo wasn’t showing fabulous results, either–they were “mixed.” So I said, “we’re done here.” I need some semblance of my life back.

But it never really came. I went on a vacation with my family and my brother’s family which was a huge “happy boost” for me, but when I got back home it’s been crapus-status-quo. My family and friends are doing double time to convince me to get out on a walk, take the dog out, go for coffee–at my request, mind you. I need people to get my sad butt out of my home before I become some kind of a hermit in here–getting fearful and woe-is-me. F-that. That’s not how this story’s gonna go….

Now I’m on another chemo–and so far no change. I am not Taxol-great, but I am not Xeloda-sick, either. I’m somewhere in the middle. We will find out in a few weeks whether this new drug is working–and whether I can withstand it–and then go from there.

So gang, that’s Highlights From Cancer Mountain. To all of you who’ve FB’d me and asked if I’m okay, this blog is dedicated to you. Yes, I am fine. I look myself in the mirror all the time and tell myself that, even as some tears fall. Like I tell my kids, you are your own best friends. You will be the ones to take you through the good, the bad and the unfair of life. Don’t ever forget that–I tell myself, now, constantly. You can do this.

And if you can’t, I tell me, I’ll still be there with you through the good and the bad. I got your back, Ann Murray Paige. I got your back.

Posted January 16th, 2014 by
Ann's Diary: The Weather
Posted in: Ann's Diary

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: IMO

I’ve been wanting to write for a while but every time I begin I lose the thread of anything significant to say–IMO.
IMO is the kids texting acronym for “in my opinion.” I’ve been texting a lot with my kids and those acronyms seem to be taking over…
Anyway… IMO it’s hard to feel good about a blog if it doesn’t leave you, the reader, with a nugget of counsel, wisdom, truth, laughter or even just a quick “hmmmmm, never thought of it that way.”  I mean, you’re busy, I’m busy, we’re all busy–
..and if I’m going to use up 2 minutes of your day it has to be worth your time. IMO.
So here I am again, writing what IMO seems so far like nothing.  But I want to write something. Because I’m not here in this world for…nothing.
I’m here for something. So are you. We all are. We’re all here for something.
Your something may be quite different from mine.  Your something might be your job.  It might be your kids.  It might be your volunteer work.  It might be your garden. It might be your voice. It might be the way you light up a room just by walking into it. It may be all those animals you rescued, or it may be your passion for whatever it is that gets you out of bed in the morning.
Whatever your something is–that grounds you, makes you feel whole, sparks a twinkle in your eye–is your gift. And it matters. IMO.
IMO what you do while you’re here in this world is critical to the success of this big blue ball–don’t discount that.  Don’t ever deny it.  (You may think “well I already know that” but how often do any of us look at ourselves in the mirror and say “I matter”?)  By being here you’re making the world a better place–believe me.
I feel the same about myself—though there are days on this “cancer crusade” I’m forced on that I get anxious that the world doesn’t want me in it.  That sounds infantile, but I’d be lying if I said otherwise. Just this week I got some scans back that, while not all doom and gloom, didn’t give me the “woohoooo cancer take THAT” I was hoping for.  IMO they are mediocre at best–
and IMO that sucks.
So as my 2 minutes of your time winds down here at this blog today let me remind you that your life matters. YOU matter. You may feel bored or confused some days, sad or just plain angry on others. But life is good. It’s not perfect, not always pretty, and in my case not always healthy, but it’s here and it’s ours and it’s….it’s life.
IMO, it’s good to remember that.
Posted September 7th, 2013 by
Ann's Diary: IMO
Posted in: Ann's Diary

Ann’s Diary: Sandy Speaks

This is a guest post by my husband, Sandy Paige, who watched me go through my recent trial with a dear friend of mine as described in the blog post “This Old House.”  Here is his take on it, and on life with a cancer wife.

NO SUPRISE AT ALL by Sandy Paige

Often times when I am asked questions about how Ann is doing, I know that people are also wondering  “how would I or my loved one react in a similar situation?” The answers I give most often are along the following lines: Your loved one will probably react to cancer as they do their biggest challenges in their life so far. It won’t surprise you.  If they need to get away and be alone, they will need to do more of that. If they need family and friends around a lot, they will make that happpen. If they are data-driven and want to know statistics and percentages, they will seek them out. The opposite is also true – if they need to plow ahead with optimism and not get bogged down in irrelevant population-based data – they will do that.

I know this because I watch my beautiful wife — with no surprise at all. None of her heroics surprise me, precisely because she was heroic before she had cancer.  These characteristics that surprise everybody are why I fell in love with her — and have fallen more in love over the past 16 years – more than half of which have now been colored by cancer.

Her co-creation of a documentary to track her experience and put it on the film circuit? A one-woman show? Speaking at Mass General’s The 100 Event? No surprise for this journalist, plebian (?) and motivational speaker.

That the documentary and speaking engagements always end with a positive tone of hope and humor? No surprise at all for this hilarious, Irish Catholic girl.

That she would select double-mastectomy when a single could have been supported? No surprise at all for a mother seeking to maximize every possible chance to stay with her children and whose husband shares her goals and priorities.

But she’s not the only one who will perform in line with expectations.  You . . .the best friend . . . will also react in line with your best, and worst, emotions and styles.  As we have traveled on this journey together, I have often struggled to be the right mate in sickness and health.  There are two things Ann needs that sometimes feel contradictory to my simplistic, male, one-track mind.  On one hand, she has often said she doesn’t want to be around weakness during this journey, that is drags her down and makes her feel sick.  So, I try to be strong her confident wing-man on this cancer road-trip.   On the other hand, she doesn’t want to be around fakeness or blindness to reality. But how do I do both . . . and at the right moment?  Where are the flashing sign-posts telling me which day it is – which road to take?

What I have learned (or maybe re-learned) recently is that the truth is somewhere in the middle, as it so often is.  Ann doesn’t want one or the other from me, there are true moments for both. But I’ll never know which friend she needs unless I’m plugged into the daily cancer grind, create the time to talk, find quiet places for just two friends to connect.  Only at that moment we can laugh and cry together — and both easily become the right thing to do.

As her husband, I’m her best friend. But I’m not her only friend. And true friends all learn the same way . . . by doing it right, and also by doing it wrong, but professing undying love throughout.  When we miss the mark, we stand back up and try again.  We stand up, dust ourselves off, find a smile and try again.

Just like Ann has been doing for nearly 10 years.

After thinking it over, that’s really no surprise at all.

Posted July 25th, 2013 by
Ann's Diary: Sandy Speaks
Posted in: Ann's Diary