Posts Tagged ‘Project Pink Diaries’

Ann’s Diary: Just Keep Pedaling

For those of you hooked up with me on Facebook via my professional page and my non-profit Project Pink, you know that I had scans this week.  The results are in.
The good news: there’s been no new growth of the cancer.  All the tumors are still there but they haven’t gotten bigger.  That’s great.
The bad news: there’s been no new shrinkage of the cancer. All tumors are still there and they haven’t gotten any smaller.  That’s not great.
So: now what?
Medically, I’ll stick to my present weekly regimen of Taxol, the chemotherapy I’ve been taking weekly since March.  I just finished my 18th round yesterday.  My doctor will consult with colleagues and the likelihood that I’ll need to get on a stronger chemo is on the horizon–but stay tuned.  I just don’t know yet.
Physically, I’ll keep up my workouts–I did SPIN class at noon today–and I’ll keep up the vegan/no dairy/no sugar regime I’ve been on for two years.  It’s making me stronger outside and that helps keep me stronger on the inside, emotionally…
..and that leads me to the emotional plan.  Now what?
Recently I’ve had more than one group of people in my life look at me quizzically as they search to understand how I do this.  How do I keep up the smiles, the training sessions, the laughter, the writing–when, to their mind, I should be scared as hell and, well I’m not really sure what else they think–but they don’t “get” my “f@ck what they studies say, I got this” attitude.
The reality is that I’m not always smiling. But you know how Facebook works–nobody’s out there snapping photos of their mental break down and posting with their status “today I almost killed myself.” And that’s where much of the “rose colored glasses” confusion begins.
I didn’t take a photo of it, but today I broke down during spin class as I digested the news I’d received a half hour earlier regarding my scans.  I cried right there as I pedaled away.  I took the long white towel meant to wipe off my sweat and wiped my tears away instead.
But I kept peddling.  And that’s when I snapped the photo.
To anyone wondering why, I answer:  and what else might you think I do?  What’s the alternative?  HIghlight the negative?  My whole existence now is a negative.  I wake up every day re-diagnosed with cancer. That’s how trauma works: it comes back every morning to rip your heart out and let you spend the next waking hours trying to stuff it back inside your devastated body.
All I know is, to let cancer kill me before I’m dead is like giving the ax murderer a knife sharpener. So to give my personal grief more air time via social media is a knife-sharpener I ain’t about to hand out.
But let me be clear: my life is not easy, and I have bad days. But I have more strength in me than all those bad days strung together. And to those who wonder where is my strength coming from I answer I have no f#cking idea.
Here’s a suggestion: stop trying to understand me.  Cheer me on or shake your head in disbelief–but stop trying to figure me out.
Just believe in me.  Hold on with me.
And if you can’t do that, just keep pedaling with me.
Posted August 14th, 2013 by
Ann's Diary: Just Keep Pedaling
Posted in: Ann's Diary

Ann’s Diary: This Old House

I was described recently of being an “actress” when it comes to handling my cancer fight. And that devastated me.

Backstory: This person who told me this loves me, and I love this person. Therefore it was of utmost importance that we got to the bottom of this.

So we went to a counselor. I know it sounds odd to go with a friend to a counselor, but I was floored and my friend was flabbergasted at my reaction and we were spinning our emotional wheels alone trying to understand the other’s point of view. We needed professional help. And living with cancer I feel zero shame admitting when I need something; if I’m thirsty I drink, if I’m hungry I eat, if I need meds I take them and if I need help I get it.

So we found a well-recommended psychologist and let it all out. And with help from this professional, my friend told me that all “they” see of my battling metastatic breast cancer is the strength and the fight part: the chemo heels, the SPIN class a day after chemo, the drinks on a Friday night, the Facebook posts, the energy I seem to have 24/7, despite a chicken broth carton-sized container of poison dumped into my body every 7 days. “It’s hard to relate” this person admitted, “to Ann’s difficulties when all I ever see is typical fun Ann.”

Now when you say “actress” to me, I hear “phoney.” So this confession hit me like a ton of spilled chemotherapy. Of all the things I’d ever liked to be remembered as in this lifetime, a phoney ain’t one of them. Thank goodness for the counselor or I might be writing this blog from Cell Block 12, serving 25 to life for throttling the throat of a loved one and meaning every bit of it. However, I’m not writing this from prison so you know the counselor helped me–and us. And how she helped was to flesh out exactly what my friend meant by the term “actress”.

It turns out “actress” can mean quite a few different things depending on who’s saying it. The meaning of actress to my friend was more like a building with a beautiful facade. You look at it and think, “wow, that is gorgeous. It must be heaven to live in there.”

And I said, “but check the medical, I mean city inspector record, and you find out it has rot in the walls, mold in the ceiling, and that roof ain’t gonna hold much longer.”

Yet it’s not my style to show the mold and rot in my life. I’m not a phoney, I just don’t wear my cancer heart on my sleeve. To do so would make me feel sicker. I don’t like to talk about what’s going wrong because it serves me no purpose but to remind me I’ve got a really bad diagnosis and the odds are kind of against me. Talking about my physical changes on a daily basis, or even in an occasional conversation, makes me feel like a whiner. And I ain’t no whiner.

“But I need to know,” my friend said, “because I just can’t see it.”

OY, I tell you. This was hard.

So I told my friend: “Look: if you really want to know how I’m doing, we have to be in a quiet, relaxed place with no one else around and we have to have some one-on-one. It’s hard for me to talk about. It’s painful. The conversation needs kid gloves. And I need to feel safe around you.”

We agreed to go forward trying to find a way to compromise: to let my friend in on a few of my aches and pains and to let my friend know it’s important to check in with me every now and again for the real deal.

So here’s the “inspector’s report” on my cancer facade these days:

1.trouble swallowing
2.teeth that ache
3.painful nail beds
4.supersonic hot flashes
5.unexected exhaustion
6.inability to drive long distances (see no.5)
7.sleeplessness when I want to sleep
8.tiredness when I want to be up and around
9.nose bleeds
10.unexpected nausea
11.hair loss
12.anemia
13.sluggish kidneys

And here’s the “working report” on what else that building can do:

Monday: personal trainer
Tuesday: work/chemo
Wednesday: SPIN class
Thursday: work
Friday; SPIN/personal trainer
Saturday: yoga
Sunday: coffee

Now that I’ve said it, I hope it helps. I don’t act sick because I am more than a sick person. I am a healthy person trying to maneuver her way through a strange time in life. I believe I am going to be better. I focus on what I can do, not what I can’t. That is how I make it through this crap. And it may be how you–or someone you love in this same fight–does it, too.

You may not be able to judge a building by its facade, but you can keep your friendship with a friend-in-crisis in tact. Just get a little professional help along the way.

And an occasional walk through the door of the building to get inside to find out what’s really going on behind the beautiful brick exterior couldn’t hurt.

Posted July 24th, 2013 by
Ann's Diary: This Old House
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

Ann’s Diary: The One Hundred Event, Part Two

The one hundred event–the yearly fundraiser for the Cancer Center at Massachusetts General Hospital–rocked my world.

I’ll be blogging regularly about my magical night at the Boston Westin Waterfront because so much happened in one evening I can’t possibly recount the entire wonderment at one sitting.  But for now I want to bring you some of the visual highlights of what has become what I call the 7 Wonders of My World: The one hundred event, 2013.

To begin, I needed to get my wig on.  Unlike my groove, to get my wig on I needed someone really good to style it.  And I found her: Michelle.

Michelle does my sister’s hair, and was the perfect woman to look at photos I’d brought with me from home and match to a tee what my California stylist did for me when she styled my wig last month.

Once the wig and dress were on, it was off to the event to practice my speech.  My wingman,

 

 

 

 

C and I took a cab and enjoyed the awesome calm before the inevitable storm of success that was about to enfold.

 

When I walked into the grand ballroom at the hotel, I was blown away by the meticulous work it took to make a large, vacuous space come to life with color, class and cancer-kicking costuming….

 

right down to the gorgeous flowers on the tables and the jumbo-tron-like screens illuminating the future speakers who were just hours away from taking the stage and standing up for the fight against cancer at Massachusetts General Hospital.

Posted June 7th, 2013 by
Ann's Diary: The One Hundred Event, Part Two
Posted in: Ann's Diary