It’s a little like a first kiss. A plane ride to a new place. A taste of something exotically delicious. Jumping in to find the water is warmer than you thought. It’s a little like that, I think. Or maybe even a little bit better. It’s the last day before my last chemo treatment.

It was October of last year when I discovered the tumor. It was a few months of denial in Berlin, tasting the most delicious parts of a new life, plane rides to new places, with an inevitable return to find that the truth is unexpected. It has been 7 months of daily doctors, chemo, surgeries, sickness. It has been choice after hard choice from a short list of few options. It has been a gift and a curse and the beginning of something that never should have started in the first place.

Those of us who have made it this far all ask of each other, of our friends, our families, “So What Now?” It is perhaps the hardest question yet to be asked, because we have survived thus far, this particular lifeboat having actually made it to shore. A little worse for the wear, the worst supposedly behind us. Are we to wake up tomorrow and go back to the way things were? What do we do with this new perspective, when everything is different and normal isn’t normal, forever? I don’t know the answer yet, but things have a way of righting themselves, and if there is one thing I’ve come to understand, it is that it might take some time to figure out. I’ll take it.

So, tomorrow there is the last of the chemo. But tonight! Tonight there is bread pudding with the best of friends. And that means only one thing.
I picked the right boat.

Until Tomorrow,
~ Ali

The title of this blog post answers every question that’s been tossed at me over the last month. Am I better? Am I done? Do I have a place to live? Am I working? Is the gallery open? Am I eating? The list goes on… Last night, at a huge party, I had to explain myself so many times, I realized, I better write something. Even if it’s just the answer.

I have been fairly MIA on the computer over the last month or so. Fairly noncommittal to anything or anyone anywhere, really. The only thing that gets an immediate YES from me these days is, “are you feeling sick?” So I have a pretty good excuse for disappearing, I suppose. I will ask for your forgiveness for not keeping you better informed, even though you’ll tell me it’s no big deal because I’m sick, and I’ll go on to tell you that’s not a good enough excuse, and then I’ll realize in about 2 hours that I AM still sick and I must immediately climb back into bed still insisting that I haven’t kept up my end of the deal. I know.

Now that we have that out of the way….

Tuesday.

I’m almost done chemo, but not quite. Just THREE MORE WEEKS! It’s been 7 months since this show went on the road. Three more weeks is like telling me it’s a 45 minute wait for my favorite table. No problem. I’m almost done with cancer treatments, but not quite. I’ve got a bit more to do before I can walk away from this wiping my hands on my pants and calling it done. Actually, I don’t know that I’ll ever be able to do that, but I do know that after chemo, there’s a proposed surgery to snag more nodes (which probably still have some cancer in them), and then maybe a couple of months of radiation, and then 5 years of hormone therapy. It’s still a ways to go, but it’s like telling me it takes 5 hours to drive to NYC and feels a little bit like I’ve just hit the Connecticut border. Almost there but not quite and if I can just make it through Connecticut…

There have been some pretty big things in my tiny little world lately. There was an incredible, and I do mean INCREDIBLE fundraising event for me back in May that I STILL have not rightfully acknowledged here. I don’t even know where to start with that one. It was called ALIVE! and if you were lucky enough to attend, it needs no explanation. In fact, those same friends are still working tirelessly to help me and again, I am at a loss for words about the whole affair. There was a spectacular iron pour in my honor at Green Foundry. And in June, two brand new babies were added to my family! My brother in arms Ezra, and his lovely wife and pup, spent the 4th of July eating lobsters with me on the deck at Morrision’s after a failed attempt at sailing. Thank goodness we had shrimp cocktail. And gin. There have been overnights at the Isles of Shoals with domino tournaments and seagull attacks and general nothing-doing. And the ~Best~Wedding~Ever~ (sing it, Stacey!) of two of my nearest and dearest friends just a few evenings ago. Oh jeez, and last night there was a birthday party for Amylyn. A BIG, happy party. And some yoga. Have I gotten out of bed yet today? Almost but not quite.

Peter gets excited about marrying Kierstyn in the garden.

OK, blah blah, getting around to answering, wait, filling you in… I’ve been living life hard and I’m paying for it. I’m exhausted. I mean flat out, can’t lift my arms, going to puke I’m so tired, tired. Its the most prevalent thing going, and there are OK days, and not OK days. Never great days. And no, I can’t tell you that in a few days after chemo I’ll feel much better. Because I’ll probably feel worse, and then I’ll feel even worse, and for 5 whole minutes I might feel half decent and then I’m back in chemo. So, do I feel good? Almost but not quite. My nose bleeds all the time. My joints are killing me. My back is killing me. My hands shake, my right arm throbs and swells, and my stomach never stops churning. I sunburn like the dickens. I can’t sleep at night, and I wake up from naps feeling worse then when I went down. I am completely overwhelmed in crowds of people. Grocery stores. Conversations are torturous. My bloody toenails look like they all got slammed in a car door. Everything smells terrible. I have hot flashes and it’s 100 degrees already outside. And perhaps the very very very worst of it all, I can’t stay focused or remember a goddamn thing. Not your name. Your face. Where I was 3 days ago. Where I’m supposed to be in 3 hours. Nada. Am I complaining. Almost but not quite. So in a nutshell, that’s how I feel. Like crap. Most of the time. Thanks for asking.

However.

I rarely say a word unless provoked. It doesn’t seem very useful to me. It’s not like anyone can do anything, and nobody likes a whiner. So I’ll dump some of it here, and then I’ll spend the rest of my time pretending that I am just fine and leave it to you to feel sorry or not as you detect the circles under my eyes or the shades of gray in my cheeks. I’ve been told that I look fantastic. That I am the healthiest looking sick person ever. Thank you for that. It helps me with the pretending. My hair is growing back, slowly but surely. It is thick and dark red and a tiny bit curly and almost but not quite useful as hair so I do not feel very much like a girl at the moment. Many of you have been kind enough to tell me I’m “rockin’ the look.” Ok. Maybe. But just so we’re clear, I would not have ever rocked this on purpose, but thank you for helping me pretend a little more.

And that brings me to this. It is July. If I’m going to be sick, then I’m going to at the very least try to enjoy it. I spend quite a bit of time these days waiting this mess out aboard a ship parked in the ocean. There are triscuits there. And rum. And my book. And sometimes there are other people there, but mostly there are not. I can go there and stare at the water all day long if that’s what I feel like doing. Spy on the fisherman through portholes. Talk to the terns. I listen to music and try to remember what I had for breakfast. I climb into my berth with my seahorse pillows and listen to the water slosh against the hull. It’s safe. I look back at the shore and I think about all the things I’ve given up this last year. I make plans to do them again and then forget them just as quickly as I had to first let them go. When I am there I close my eyes and pretend. Just a little bit more. For just a little bit longer.

Summertime

Almost but not quite,
Ali

I took the oars, I got in my rowboat and I did it. I did it.
Do you know what that means?
Everything.

I have been writing this post for 2 days and here I am. Still right at the very beginning. Not a word I’ve put down seems adequate enough to describe these last few weeks, this living with sickness, this tide of emotion that blows through me. The days that swallow me up and spit me back out laughing and crying and gasping for water and wind all over again. For every drop of miserable poison they push through my veins, I manage to muster that much more will power to stay afloat and I push back. Hard.

I’m exhausted. I ache all over. I’m still sick. But I’m happier than I’ve been in a very long time. Might seem an odd thing to say in the midst of this mess, but if I had the energy to write it all down, you’d be pretty happy about things, too. Tomorrow marks the halfway point in this second round of chemo. I’ll row right through it, and maybe in a few days more I’ll be Lucky Enough to make my way to the Shoals in the sunshine. Knowing full well, no matter how overwhelming, I can (and will) do this. Lucky Enough to be surrounded by what matters most.
You.

~ Ali

I’m sitting here in my mom’s comfy chair, wrapped in a bathrobe, with a steaming hot cup of coffee. My dad just handed me a fresh donut. Asher is at my feet, with the sliding door open so we can smell the sea air, and listen to a million birds chirp their way from one blossoming tree to the next. It all seems so positively normal, doesn’t it?

5 weeks ago today I woke up delirious, sick, happy, in terrific pain, asking for mashed potatoes and socks. I was soaked in sweat and didn’t dare move a muscle because even though I had no recollection at that moment as to what I was doing in that bed, in that room, I could tell by my best friend’s face, and the puffy eyes of my parents, that I had undoubtedly just suffered some terrible trauma like a drive-by shooting, or a car accident, and that it would be in my best interest to check in with all my limbs before doing something silly like, oh, I don’t know, smiling. But I did, and remarked to everyone’s humor, how FAST the whole bi-lateral nipple-sparing mastectomy thingy had gone down (8 hours later). To my (and everyone else’s) surprise, I shoveled those most god-awful mashed potatoes into my mouth like a robot with tiny arms. A couple of blood transfusions, a risky fever, several panic attacks, 10 inches of stitches, four days and two new boobs later, I walked myself out of the hospital wrapped in the same bathrobe I’m sitting in now.

I won’t go into too much gory detail about how the last 5 weeks have gone. Had I written a post shortly after arriving home, you, the poor reader, would have slit your wrists after the first few sentences. It wasn’t fun or funny. In fact, it was downright awful. Healing has been an arduous task, that has required much patience on my part (And my family’s). This wasn’t a pretty breast augmentation, people, and brand new boobies don’t just grow themselves. My entire upper body was completely deconstructed. Right on down to the chest wall. Then, it was reconstructed using lots of foreign material. Lymph nodes were dissected through my armpit. My muscles were reconfigured from back to front to accommodate for all the missing tissue (which has made for some interesting postures and some downright intense PT sessions). Every square inch of my body has had to relearn itself in a whole new way. To describe it in a fashion you might be able to understand, imagine a giant rubber band has been cinched around your chest. It’s so tight that everything has gone completely numb. Now. Snap It.

Yes, yes, it hurts and all that, but what about the stupid boob cancer?? Um. Well. Um. Ya. About that…

A day or so after surgery, in a stuffy hospital room full of nurses and doctors and friends and family it was announced with lots of cheering and clapping and downright carrying-on, that my margins were clear, my nipple tissue was alive and well, and my lymph nodes were cancer-free. The ground-breaking surgery was a success. The weight of a thousand elephants was lifted off my chest. It was out of me. For all intents and purposes, the pathology at the time of surgery told everyone in the room what they wanted to hear. All Clear. A week later, however, the same faces walked sullenly out of the surgical office with a new set of pathology.

The cancer had formed nice little tumors in my lymph nodes, and precancerous lesions were already forming in my “healthy” left breast. Are you kidding me?? Nope. And so the last few weeks have been filled with consulting, discussing, weighing options, outlining scenarios, statistics, asking questions, crying, begging for it to just go away, propped awkwardly on pillows exhausted and awake in the wee hours of the night wondering where it would pop up next (My bones? My brain? My lungs?) and concluding that cancer is a bitch that needs a good slap, and so I will continue with a new 3-month weekly dose of chemo, followed by yet another surgery, and then maybe even dip my new nips in a nice dose of radiation. My hair will fall out again, my mouth will fill up with sores, my toe nails will crack open, I will not sleep or eat much, and I will ache, but I will be doing what I need to do to make sure that I stay on the right side of the dirt. You can see how perhaps it was good that I waited until now to write this little post of mine. It’s been a touch messy over here.

Hey! Hey you! It’s still me!
And would you be surprised if I told you a week after surgery I was enjoying a lovely baby shower for my cousin, or shopping for shoes? (I blame good drugs and my mother for those couple of outings). And wouldn’t you be so pleased to know that I have gone from crying every day over a body image so ravaged by this experience to taking photos of myself with awe and amazement at how good I actually look? To know that walking 3-5 miles a day does more damage to the poor dog than me? Can you also get excited about my delightful month’s break from chemo that has given me the energy to curate an exhibition for June at Drift Gallery with my friend Ezra Caldwell, a photographer and bicycle builder from NYC? ‘Truth & Consequences’ stands to explain a whole lot more in pictures about what it’s like to spend the best years of your life with a terrifying disease that has everyone throwing pots and pans at you to keep you from croaking. You might be even more excited to learn that I put 6 fresh Maine lobsters and a bottle of champagne in a cooler and drove them all the way to Harlem by myself last weekend to celebrate the end of my dear friend Ezra’s treatment for “Ass Cancer.” I started chemo again just this past Tuesday and still made it to the PMA opening on Wednesday night. (Allez! Allez! Allez!)

Ez & Putney ~ Harlem, May 2011

Hey! HEY! It’s still me! And for as long as I’m still on this side of the dirt things will stay more or less the same. I will continue to scheme on what comes after all of this healing is done. I will not give up. Ever. I have too many people working tirelessly at this very moment to make sure I don’t have to worry about the small stuff while I’m working on the big stuff. I’ve made some pretty fat promises to these people that I intend to make good on.

If you would like to meet the amazing people in my life and see what they have been up to these last few months then please join us on Friday, May 20th for one of the most incredible events I’ve ever seen on the Seacoast.

ALIVE! A Swanky Night of Art, Auctions, Food, Music and a debut performance by Lady Luck Burlesque

There are not enough adjectives in the world to describe how moved I am by the collaboration, the donations, the community, the LOVE that has come together on my behalf. Everyone should be so lucky. Everyone. I am so freaking lucky. An aside… if you walk up to me the night of the event and I have to ask you your name, I’m not trying to be silly. Chemo has blessed me with a forgetful memory and I’m really struggling. So, help a girl out. Introduce yourself. Again.

I know, I’ve dragged this post out into a novel, my coffee is less than steamy now, and it’s that time of day when still being in your bathrobe becomes a questionable lifestyle choice. I just can’t let this one go without acknowledging the team at York Hospital who are also working tirelessly to save my life. My dream team surgeons, Dr. Edwards and Dr. Holland (Oh, Girls!), my oncologist Dr. Eneman (who poisons me regularly but I like him anyways), my PT guru Elisa Frasier (who knows herself how hard this is), and all the nurses who have made this awful nightmare pleasantly tolerable with a little humor, lidocaine and a lot of compassion.

HEY!!!!!
It’s still me!
~ Ali

Your grief for what you’ve lost lifts a mirror
up to where you’re bravely working.

Expecting the worst, you look, and instead,
here’s the joyful face you’ve been wanting to see.

Your hand opens and closes and opens and closes.
If it were always a fist or always stretched open,
you would be paralyzed.

Your deepest presence is in every small contracting
and expanding,

The two as beautifully balanced and coordinated
as birdwings.

~ Rumi

The worst of the surgery is behind me now. I am working hard to heal. Much love to my friend, Geneve Hoffman, for her beautiful photographs of my life. They are my mirror, my reminder. Thank you.

With gratitude,
Ali

When I say I’m OK, I need you to believe me. I’ve been practicing for this my whole life. Building on one experience after another. The good, the bad, the ugly. It all adds up to one tough girl. And when I tell you this you have to believe me – I’ve never been more ready for anything in my whole life. Of course I’m scared. I’m 38 years old and I have cancer and I’m about to undergo a procedure at York Hospital that’s never been done there before. A nipple sparing bi-lateral mastectomy with full reconstruction, all in one day. Wha??! But you know, tomorrow, I’d like to think of it this way… By this time tomorrow, I won’t have breast cancer anymore. And that’s something. BIG. (34 C’s to be exact.)

I’ve felt almost normal in these last few weeks. Better than I’ve felt since I left Berlin. I walked 5 miles on Sunday with Asher. And went to yoga this week for the first time since the New Year, chest port be damned. I’m eating again! My last chemo treatment was the 8th, and since the 22nd, when I decided to throw everyone a little curve ball and ask if we could do this differently (they said YES!), they’ve given me a few weeks reprieve to prepare for surgery. Last week, the chemo fog lifted just enough for me to finally have the presence of mind after 2 months of living hell to realize something… HOLY SHIT I HAVE CANCER!! And I had to take a few days off of being OK to grieve a little. I know, I know, I still have to heal and then start another 3 months of weekly chemo. But here I am on the eve of it all, confident in my surgeons (these gals rock!), and knowing without doubt that this will save my life. (Basically, I don’t have a choice so I better just get OK with it.) Believe me.

I’ve had a lot of people ask me over the last few weeks how the hell I’m walking around like I’m on a cloud, smiling, laughing, joking. It’s pretty easy, actually. I am surrounded by people who love me and want me to live, and they tell me all the time. How can you be upset about that? I am so loved and it’s an unreal feeling. Humbling, really. I also have a lot of friends with fantastic senses of humor, and this whole entire mess is one of the funniest things we’ve ever encountered. The whole of it. None of it makes any sense, and things that don’t make sense can almost always be found comical (for starters, I’m bald! Ha!). Looking at this any other way would be a terrible waste of precious time.
Believe me.

So to get right down to it, in a few more hours my amazing team will roll me under the big bright lights and get to the business of saving my life. I can’t wait.
Believe me.

So much love,
~ Ali

Many thanks to Geneve Hoffman for giving me a few much needed days of pampering with the amazing gals at Glow Bodywork, and then taking me out to the sea. XO

I should write more when I’m well. My last post was a little dreary, I’ll admit. I just thought you should know how it’s really going, since so many ask me what it’s like. I spared you some details that I hope none of you will ever know. Some things are better left unsaid. When I feel really good, you know, well enough to post something of substance, I usually have about 36 hours before I know I won’t, and I cram it full of life. Doesn’t leave much time for writing.

I am doing better. Not awesome, as my friend Nate put it so well, but better. It’s a relative term around here. Measured in fits and starts. One minute I am bouncing down the stairs after the dog. The next minute I’m creeping up them, almost too tired to make it to my bed. It’s how it goes. This last (LAST!) round of Red Devil absolutely leveled me. I don’t know any other way to describe it. A secondary infection took over my body the day after, which compromised a lot of things – like my ability to take compazine for the nausea, or prilosec for the the lighter-fluideasque reflux. Certainly no sleeping pills. I was delirious. I was miserable. And thankfully, I don’t remember much.

For the first time since this whole thing started, I have started to doubt how things are going. It’s impossible to describe the weight of this. How it grows with every day, the knowing, the not knowing. It’s not just about being sick. There are a lot of other things that happen in you, around you, for you, without you. There’s no anger bubbling up. Not at all. Some frustration, restlessness, resignation… I’m a girl who needs a plan, and this is just not going the way I planned. How could anyone not feel a little sideswiped? It comes and goes like the tide. This past week I was grateful every day when I opened my eyes and was still breathing. That was big. Ah, the little things.

I have not been well enough to take photos, so this post will lack a visual. (However if I did, it would be a photo of the stunning orchid my friend Duncan brought by to keep bedside) What I would like to do instead, is impart to you how wonderful it is, when I feel so incredibly sick, to know that there are so many incredibly wonderful people out there – those of you I know, and those of you I have yet to meet, who are praying, cheering, chanting, yelling, throwing things, just for me. I feel it. I need it. This is a lonely planet some days. And there isn’t much anyone can really do except put a good thought out into the air. For all of you who email, text, post, comment, call, send cards, letters, little tokens… I am grateful, even if you don’t hear back from me. Thank you for everything you do!

Despite the doubting moments, I’m committed to this project. This is just a fling I’m having with something dark and dangerous. Lord knows, I’ve already had a few of those and I did just fine.*wink*

I’ll be awesome… soon!

I hardly have an ounce left in me to type, but I feel as though I should explain how this is going. Not well. It is happening. Exactly like they said it would. I would be sick. And then I would be sicker. And the good days would grow shorter and the bad days would be so long you would wish death just to have them over. Here I am, wishing there was a different way. A better way. This is the only way not to die, and they are killing me.

You can say you’ve been tired. You can say you’ve not felt well. In fact, I know that I have myself, had the flu so badly, worked myself into such a state of disrepair, that I too, thought I knew what it felt like to be hit by a bus. But no. You don’t really. After they start pumping you with chemo, and then steroids, and then more chemo, and then blood cell boosters, and then more fluids, for hours, your stomach swimming, to the point you start swelling up, hallucinating, grinding your teeth, visualizing yourself just grabbing those tubes and ripping them out and running away screaming… you cry all the way home because you can’t believe that after all that now you can’t feel your fingers, your skin is on fire, your head is splitting open, your hands tremble uncontrollably and all you want to do is throw up. You wake up a few hours later and try not to vomit but the excruciating bone pain that radiates across your chest, your arms, your back, your legs… exhausted, your legs don’t work and you can’t get to the bathroom, and you can’t roll over, you can’t find comfort in any place, the room spins without reason. And then you’re soaked in sweat, crying again because this is nothing a body should suffer for this long and it’s terrifying to know without a doubt that you have to, that there are still months and months to go. People talk too loud, too fast, asking questions through a fog that wraps itself around your brain and keeps the words from coming and the thoughts from staying. You can’t chew. You can’t swallow. Your mouth, your gums have been reduced to raw flesh. Chemo seeps out your eyes and glues them shut. Days and days go by like this and you can’t remember what day it actually is, what time it actually is because your eyes are closing again. You wake up and it’s all still just as it was. Miserable. And there’s nothing anyone, not one single human being with any sense or not on this whole earth, can do about it.

I don’t tell you any of this as a way to summon pity or elicit encouraging comments, although all of you are so kind and wonderful and every cheer counts. This is just how it goes right now. Not well. And you’ve been asking, so…

My kick-ass friend Ezra says we are not heroes, and we expect no medals of honor for bravery. That we don’t fight, we just keep getting up. He knows a bit about this, and no matter how miserable this gets, he does. So I will.
~A.

You can watch Geneve’s “Chemo Day” Slide show HERE.
*photo by Geneve Hoffman

You drive your shoulder in, and you fight. No matter the cost. You don’t need words. You don’t need anyone else to acknowledge the battle. It is yours alone. And you do it. You do it.

Today I realized that I shaved my legs a few days ago and it hasn’t grown back. When I had a little V8 moment about how great this was, I brought my hand back down off my head… with a fist full of hair. Oye. I mean, no eyebrow plucking, no lip waxing, no shaving armpits, legs, bikini lines. All that business sounded like a bonus when I started to think about the future of my hairless body. But the reality is that I am not ready for my actual HAIR to fall out. And it has pained me greatly these last few weeks to know that when that happens, there is no denying anymore that this is really happening. The little girl, who had a little curl, right in the middle of her forehead is gonna be bald. Oh, and if you didn’t know this about chemo… when your hair falls out, it hurts.

Cancer strips you of control when it comes to just about everything. It’s powerful when you find the one or two things that you can actually call the shots on. So, this past weekend, after a fun Saturday night out in Harvard Square with my locks soaked in rain with a side of burrito drippings, beer and cigarette smoke, my gal pals and I had us a little Sunday brunch hair pahty. Listen, if it’s gonna go, it’s gonna go on my terms. We met at Sugarz Salon in Kittery, with yummy foods and lots of Prosecco, and commenced to discuss with the Sweet Riannon the best of the worst kind of short hair cut. We decided to go as short as I could possibly stand it, and with the collective energy of a few of my bestest friends and one who is a professional photographer, we commenced to work our way backwards through a series of shorter and shorter cuts, until we were at the end, and I had gone from shaking uncontrollably to laughing, too, and wondering how this long red hair had turned into this sprite little elfie look. It was so NOT ME. But I had done the very best thing I could do for myself which was to just say, “This is going to take some getting used to. And it is here.”

And here it is…

Riannon, Kierstyn, Rachel, Gabe, Holly, and Geneve… Thank you, my Lovelies. Thank you.

~ Photos by Geneve Hoffman (and there are over 100 that I wish I could post here! They are so great!)
~Hair and products (like cute little hair clips!) by Riannon at Sugarz Salon