Posts Tagged ‘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: 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: Believe

One of the harder things for me to wrestle now, along with the happy holiday mantra that others are caught up in and I so desperately want to be swept up in too, is the notion of believing.

I don’t mean believing in Santa, which of course I do. I mean in me. Believing in me beating this cancer. Which of course I do.

It’s others in my world who have begun to think I have lost my faith in me. Lately I’ve been getting notes, letters, comments, texts and calls about “don’t stop believing.” I shake my head and think “ME? You talking to me?”

I have always believed I can do this. It will be ten years in March that I first wrote my letter to the Medical Santa and stated firmly: “I have been a VERY GOOD GIRL. And I just want one thing this Christmas: I want my health back.”

I am not new to the BELIEVE notion.

That was 10 Christmases ago that I wrote that note to my Santa, and so far he’s been, well, he’s been good. He hasn’t brought my health back, but then again, he hasn’t taken it away either. He’s stood by and watched me tie my son’s kindergarten shoes, hold my daughter’s hand into the preschool class, help with Spanish 3 homework and braid a long lock of blonde hair for the umpteenth time. Santa, like I am, is doing his best. Cancer isn’t something either of us can believe away. I can hold onto the hands of people who love me and still worry that this isn’t going so well. That doesn’t mean I’m giving up. It means I’m scared. And tired. And bloody well bullshit that all the holistic, self-healing, medical, emotional, spiritual, vegan, no-dairy, exercise, nutrition, Lourdes Water and all the rest of the dozens of “things” I’m trying to bat this beast away seem to work for only a while. Was I looking for a miracle you ask? You bet I was. And I still am.

Dear Medical Santa,

This year, I have been an especially good girl. But cancer has been naughty. It’s made me undergo 26 rounds of Taxol, 12 Zometa infusions, a port placement, a blown artery, 10 rounds of whole brain radiation, a port removal, 2 non-closing wounds, decreased vision, 3 new chemotherapies, unexpected exhaustion and the growing realization that the brain rads have made me bald for life. As for me, I have spoken at several cancer events, from 5 girl scouts in a living room to almost 1000 people at a Boston cancer center fundraiser. I have reminded people through my writing and my presence that all is not lost when things aren’t going right: and that there is another day coming in which to find your comfort, strength and balance. I’ve also been the recipient of incredible honors, including the inaugural Project Pink 5K which will be held each year in Davis, CA to raise funds for my non-profit, Project Pink** and been chosen as a “the one hundred” recipient for my breast cancer advocacy over this last decade.

So Santa, we’ve been here before, you and I. I’m asking for something yet again this year, and I’m hoping you can find it in that big red bag of yours. I’d like my health back.

Here’s my give to you: I promise I will continue to be a very good girl next year. I’d like to go back to that Boston cancer center and help them out again in 2014. I’d like to begin the business plan of getting “pink tips” out to its first group of cancer fighters, right here in my home town. I have a children’s book that is on the edges of being ready to publish. I have 2 more books in the series “Words To Live By” that I need to publish. And Santa, if I can have my health, I will pick up where I left off with “In the Pink”, my one-woman show. I wanted to go on the road, performing that at high schools around the state–maybe country?–letting kids know that the world can be tough but they can be tougher, we all can be–if we stick together. And I’m sure there are more opportunities out there for me, Santa. I just gotta be here for them.

Finally, Santa, please bring my friends the comfort that I DO BELIEVE. I believe in you, I believe in me, and I believe that somehow, some way, even as I live in this incredibly tough spot, I will beat this friggin disease. You know it–you’ve know that for 10 years–and I know it…

Now please help them know it, too.

–Ann

To my friends, I leave you with this:

The fact that I’m struggling with the side effects of this new chemo does not mean I’ve stopped believing I can do this. It means I so believe I can still do this that I’m willing to struggle with the side effects of this new chemo. So believe in me.

Because I do.

**all funds will go toward Project Pink’s new mission of getting a copy of “pink tips” into the hands of every newly diagnosed breast cancer patient across the country–and one day, around the world.

Posted December 3rd, 2013 by
Ann's Diary: Believe
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