Ann’s Diary: The Gifts

Some 3 decades after it was filmed, I finally watched the 1980’s movie “Say Anything.” It was adorable in the 80s way–sweet, non-complicated, hidden twist, and young love–without anything blowing up or me needing to go on Google to search something that leads to one big twist that I typically don’t understand nor want to. Living with cancer, I need the soft stuff to help cushion my shredded barrier that once kept the “oh that would never happen to me” away.

This morning I’m thinking about the movie, and how the boy was so nice, and the girl was so sweet, and how they were just trying to be good to each other. Without the cheating, the lying, the immaturity and the teen angst that is the reality of life outside the computer/movie screen. And I think I am focusing on that not because I think a “Say Anything”-style love can be achieved (I know a few who’ve been together since high school, but a spare few. It’s not typical of marriage in the 21st Century) but because as a child and in my teens I really WAS thinking, ‘Oh that’s gonna happen to me!’ The good stuff, of course, just the good stuff.

As I grew up, I was very romantically immature. I wouldn’t have known how to let down a guy if he was sitting on a stair chair at the top of the stairs and there was just one button to push. I hurt a lot of guys by never being able to properly explain myself or even knowing what my real reasons were; mostly I just turned and fled. NOT a good game plan. But it was the only one I knew.

As I look down the road of “Who Knows What’s Gonna Happen” I feel the urgent need to fill in some of these blanks with my kids. No one uses movies and books as a source of reality–at least not on their outside. But on the inside, things were always brewing in my mind. I never talked about it, but I’d be watching flicks thinking ‘Maybe my news director, who’ll look like Robert Redford, will guide me from being a small producer to a big-time anchor! Or.’.. maybe a guy will chase me from high school graduation all the way until I go to college; and along the way, he’ll save me from myself and be the most trustworthy guy in the world! ‘ (I had a guy when I was 29 literally jump off a porch, chase me down and romance me so hard over 3 weeks that I broke up with the guy I had just started dating. Guess what? 3 weeks later, that guy dumped me for his old girl friend. Now there’s a fairytale.)

So I’m the one that, when my kids would watch Cinderella would say as the credits rolled “Now remember guys, that’s a movie. It’s words someone wrote on a (then) piece of paper. And those voices are actors. Life doesn’t work like that.” And back then I’d throw in an age-appropriate kicker, like “you have to know someone” or “it’s hard. It just is. And some stuff makes no sense.”

That of course rolled into, “what is the point of life, anyway, Mum? What are we doing here?”

And I would always, to this day, answer them like this:

“Life is about giving out your gifts. I don’t know what they are, and at this point you may not have discovered them either. But you have gifts, from learning and sharing you gift of music, to bringing a smile to a sad person’s face by just acknowledging them when you walk into a room, to maybe being the best doctor, business owner, teacher, tennis coach, –whatever. And you have many more, too. Life goes forward. Not backward. You don’t look back and say “I should have..” You say, “I think I’m read for…” and then DO IT.”

And never give up. There’s my affinity for Winston Churchill coming out again, because that’s his quote. But many use it. Many look into the low end of a toilet bowl as they are letting go of whatever is in there because of chemotherapy and between each wretch think “I can’t give up. I still have gifts to give.”

You can imagine the conversations that happen in my house. I don’t have them often because it’s pretty heavy over here under our roof these days. But there’s no time like the present as someone said, and for me the blessing is that I still have a present to be in. And I’m gonna “be” as long as I can, still seeking out the gifts I’m supposed to be giving while I’m here.

I hope you have that same game plan in mind for your many years to come.

Posted February 7th, 2014 by
Ann's Diary: The Gifts
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Ann’s Diary: World Cancer Day 2014

I was getting out of the shower this morning–well, it might have crested noon by that time–when a good friend texted me and said, “It’s World Cancer Day. Feel like blogging?”

I didn’t know it was Tuesday, much less World Cancer Day, and I stood and looked at the text. Just half an hour earlier, wrapped in my bathrobe that I couldn’t get out of this morning, I had said to myself, “You haven’t blogged in a long time, Ann.” But the thing about my blogging is I don’t blog until I feel like I have something to say. And not a whining thing–a real thing. A thing you and I might actually get something from…

…and there will be thousands of articles about WCDay today anyway. So what’s the point.

That’s not unlike what I’ve been feeling about this whole metastatic-cancer-in-brain-in-lung-try-this-new-chemo-which-makes-you-sick life I’m leading right now. What is the f-ing point of this? What if I just stopped all the chemo and said F it. Clearly the C is in the lead and Ann’s life-as-she-knew-it is in the ash can. What if I just tossed all the bags and the pills out the window and let the clock run down?

These are simple questions that fly around my room like rabid bats, occasionally getting tangled in my mind. Letting the clock run down means countdown to no more Mum, no more wife, no more pals, no more me. I think of that one and I think ‘why wouldn’t the world want me here?’ Like I just told a friend who emailed me with her condolences, “I just keep asking the universe, are you SURE you want me gone? Because this world does not seem full of positivity. I can bring that, you know. I’ve been doing that. Are you sure you want that voice to be silenced?”

And then I go the other way: what if I just keep up like this? Pills every day, setting up meetings with friends (for walks), losing weight, fighting for my day so that I don’t lose another one sitting in bed. Every day I live now is dedicated to NOT letting cancer take me before I’m gone. It’s a boatload of work and it’s no fun–but I’m doing it.

Still the questions….

So…if I have two green smoothies instead of one per day, will that help? If my trainer volunteers (which she has) to come by each day and help my lung capacity get stronger with easy exercises, will that help? If I have 4 bags of saline….if I eat pineapple seeds….or jalapeno pepper seeds…flax seed oil (which I’ve taken for years), Graviola leaves (check), no-dairy (check), meds from the docs (check)…..it’s exhausting. Everyone it seems has “the cure” for cancer, but claims an industry/government conspiracy of repression to keep it from us. That’s some dedicated, organized, well-managed industry/government work. If they could transfer that ability to Capitol Hill, oh what a world this could be.

So back to World Cancer Day. As usual, I am so happy that groups everywhere, like this one, shed a spotlight on this stupid, life-leaching, long-going, determined-to-kill bastard of a disease. I thank all of you from the bottom of my breaking heart for caring.

But if you really want to do something for those of us in the battle, or those who are going to be, do it soon. Some of us are going….much faster than we ever expected. If you need any extra reasons, think of any little face you see, boy or girl, and think–“I could save him/her.” And if you need a Real Big Reason for helping crush cancer, think of what I told Tyler Jacks, Director of the Koch Institute for Integrative Cancer Research during the “Women on the Frontlines Fighting Breast Cancer” Conference at MIT last fall when he asked me:

“Ann, you have a lot of medical people in the room, researchers, educators: What is the one thing you want them to know, the one thing (modified here because my memory is bad) that could make their practice better? ”

And I said, “Cancer has changed. It’s sneaky. It’s no longer just after the fast food eaters, the smokers and the women over 60. It’s after all of us. If there’s one thing that you can do to make you practice better, it’s to treat your patients like humans. They weren’t stupid, they didn’t overindulge or forget their almonds or ignore the gym. New cancer patients are some of the healthiest people out there–until they find (in my case) a lump. So Tyler, I guess my advice to all medical people is this:

to make your practice better, every time you open that patient door to see another frightened face on the other side, whisper to yourself “there but for the Grace of God go I.”

It’s compassion that will make us all feel better as we fight for our lives and you try to smother this world cancer beast–once and for all.

This blog is dedicated to Chris F.

Posted February 4th, 2014
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
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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
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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
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