Posts Tagged ‘metastatic’

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: Isaac’s Advice

There’s a phrase I lean on all the time when things aren’t in my control and I’m stuck: it’s “who cares.” But it’s not the who cares you think it is—not the one that means “I don’t care.” This is a different one. I’ll explain.

It was Christmastime, about 3 or 4 years ago–and I was visiting my folks back east. I was in the kitchen of my next-door neighbor, Darlin–who was my godmother and neighbor for as long as I’d been a person in the world. I always loved to hang out at her house during the holidays and find out what all of her 6 kids, in-laws and her grandchildren were up to. I considered them all my extended family and so, on this afternoon before Christmas, I pulled up a kitchen barstool and listened in on the conversation.

Debbie was talking about her youngest son, Isaac, and she was telling everyone how naughty he was being lately. He was probably 6 or 7–the right age for being naughty–and she was saying how he’d done something he shouldn’t have, I don’t remember what. I’ll just pretend it was spilling milk for the sake of this blog. So she was saying “and he’s spilled his milk. And I said, Isaac, pick up the milk. And he didn’t. So I said, Isaac, really. Pick up the milk. It’s a mess. And it will smell if you don’t clean it up. ”

Then Debbie looks at us and says, “And you know what that little imp said to me? Who cares.”

Now I have to insert here that part of the adorableness of the story was Isaac’s Boston-like accent–which Debbie imitated. If you’re from that area you know what I’m tawkin-bout: our As are more like Es. Our Rs are non-existent. And we can make multi-syllables appear from nowhere in a word that has 4 letters.

So in this story, it’s the A in “cares” that I need to explain. It’s like the e in key. That’s the accent Debbie used when she imitated Isaac. “Who key-ahs.” “And then,” she finished up, “he just ran out to play.”

I took that story home with me and I thought about it all night long. At this point in my health, I had metastatic breast cancer in my lung. I kept rolling that story over in my mind and I transferred it over to me. In my situation, battling friggin cancer, to be able in the moments when I have no control and all seems lost in the doc’s office, to have a “who-key-ahs” attitude and just move through it. To be able to just let go of the angst and anger and keep moving… even if milk has spilled and I can’t pick it up. Wouldn’t that be a gift to let go and really feel like since I can’t do anything about it, forget it.

Almost 5 years later, I say “who key-ahs” all the time: especially now that I have breast cancer in my liver and my brain. And I use that phrase long after I’ve cried hard over something I can’t change. Ex: I can’t get my ass out of bed on Xeloda. Who cares. Ex: My hair may not ever grow back after whole brain radiation–I may be bald for life. Who cares. Ex: I can’t get to 6a.m. spin now that chemo is kicking my-ass. Who cares.

It’s not that I don’t care about this bullsh-t I’m battling: I sure as hell DO care. But when I can’t do a damn thing about something, and when the rest of the world would be angry and getting in a froth over it, I think– I’m not putting any more of my energy into something I can’t change. I can only move forward, and to hell with what’s not in my control.

So at this Christmastime, I raise a glass of un-spilled milk to my buddy and my little pal, Isaac–who now doubt has zero idea that a story told about him many Christmases ago is helping this cancer fighter through some of her worst moments ever in this long battle with the breast cancer beast.

Here’s to Isaac: my pint-sized therapist–who guides my steps and the steps of others I’ve shared this story with over these last years–as we traverse the scary, the unforseen and the frightening of our lives. So we don’t have ultimate control: so we don’t know our fates. And we may not really ever understand why bad thing happen to good people in this world. And we may never know why..

and who key-ahs..

Posted December 11th, 2013 by
Ann's Diary: Isaac's Advice
Posted in: Ann's Diary

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