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
You. Are. Amazing. <3
As a less-than-perfect stranger, who somehow bumbled upon this monkey butt stuff and found you here, in your robe, with your words and your cooling coffee, i hear you, i see you, and i feel deeply the human-ness that rises and falls and rises again. We come apart, we come together, we come apart again.
And then we find you, wrapped in a robe by the sea, and come together once more.
thank you for being so honest.
Oh, Ali. Wow. You have endured so much. You are so blessed to have the strong attitude to fight and the wonderful group of friends and family to support you. I wish I could hug you right now. Pretend you canfeel my hug.
I was compelled to write and let you know you are in my prayers and my thoughts, and that you will continue to be. I hope this does not come off slight but I think you are courageous and talented – phenomenal. You write powerfully personal, personal AND powerful. I wish you well, I wish you freedom from cancer and I wish you a long, healthy and creative life. Bless you and be well.
Ali,
We are total strangers, but I feel so much in your words. I have laughed and cried reading through all your posts here. My feelings of my own journey this past year have welled up as I read your wonderful posts. I started my journey last April 29 and have just passed that year mark of being told my life was different than I’d known it to be. And, different it has continued to be. But, it is better in so many ways, too.
You will be in my prayers and I will continue to follow you on your journey. Stay strong and just take it one day at a time. That was my motto that kept me going when I was at the deepest deepness. You can only go up from here!
Some day they will figure this whole thing out and we will not have to poison and disfigure our bodies. In the meantime, we fight the fight!
Consider yourself hugged 🙂
Patty
Hi there Ali,
I don’t know you – I stumbled on this website because my dear friend Ellen Rondina shared it on her facebook wall. My sister Terri, (age 37) was diagnosed with breast cancer right before Thanksgiving. She is finished with chemo and had her surgery at about the same time you did. She did some complementary alternative therapies and they really seemed to help the side effects of chemo- stuff like essentials oils for her nails so they didn’t hurt or crack and diet things to combat nausea. Anyway, you may well have done the alternative therapy stuff but if not, her name is Terri Eickel and she is on facebook. I am sure she would be happy to share info with you!
Your posts are beautifully written – Keep fighting! In my family, we found a saying that resonated with us. “Anything that doesn’t kill me…better run like hell!” 🙂 Kick cancer’s ass!
Best,
Mindy
Dearest Ali,
We don’t know each other and I came to learn about you from two awesome chicks, Gina and Carole. Gina mentioned the benefit one day after class and I stalked the website until tickets went on sale! I was so happy to be able to help AND to see the girls dance in their debut performance. You are inspirational and are touching so many people by just sharing. Thank you for your courage. I hope to meet you on Friday but if not, I’ll be cheering you on to get better!
Sending super positive, healing vibes your way!
Ali,
Reading your post brought back a flood of memories of a year and a half ago when I had a terrible accident that reduced to me an infantile state with my mother having to do everything for me- it was such a rollercoaster of emotions, from at times wanting to get out of my bed and run through the window or into a wall head first to stop the agony (not thinking very clearly obviously!) to having a big laugh joking with my mom as to how many enemas she should run to the pharmacy for (we somehow laughed even more when she had to administer it!). The poor woman had to bear with me while I screamed the f-bomb at her in delirium to “GIVE me the %$# drugs NOW”- geez, I even almost called 911 on her as I thought she was torturing me in my pain-induced insanity. Definitely not the kind of stuff anyone ever wishes for…but your post reminded me of both the painful and funny moments, and of the love, caring and support that came from friends (three months of people dropping off food every day… a birth nurse friend that came with me to have the metal rods pulled out of my bones to tell me when to breathe,,, all the things I think about often in pure gratitude) & then the unwavering love, caring and support from my mom which gave us an even more amazing bond for the rest of our lives, and the support from the medical professionals- especially my 3 physical therapists who kept me sane on the worst of days (one woman in my head I thought of as ‘my own personal cheerleader’, one was my ‘reality check’ and one pushed to me to the limits of what I could take to find out what I could take to get me strong again).
While I cannot imagine what you personally are going through (god it sounds like it blows way more than monkey butt!), but I can in some way identify with it. And what popped into my head when reading your post… in seeing and feeling the grace you have found in this most tragic time… is that when we are at our most powerless, is when we can be most powerful. Your grace, spirit and beauty are proving stronger than your pain.
Your post also made me recall counting down the weeks and days until the metal rods would be removed from my body, and then getting to that day and painfully finding out that I wasn’t “fixed”…That what provided the fix, had caused atrophy and devastation to muscles, tensons, cartilage and that recovery would be another 6-12 months and that there would be no total recovery. When I thought I had been through the worst, when I thought I had nothing left in me for the fight, is when I had to muster up courage and strength I never knew I had to finish the battle. I wish you continued courage and strength to keep going in your battle Ali. And my only advice is: it feels really good sometimes to allow yourself to scream sometimes at how much it sucks…. but do try not to drop the f-bomb at your momma (thankfully good old mom is forgiving lol!)
xoxo michele (the one who will be wearing the tutu tomorrow).
p.s. one of my favorite quotes…
“In the depth of winter I finally learned that within me there lay an invincible summer.”
~Albert Camus
Your post is so honest! Thanks for sharing it.
Erinne
Hey Ali, Yesterday I was cleaning out my old email box and stumbled upon the Alive Event Email and your name. Crap was the first word that came to mind, or maybe it was double F*** and crap.
Today I go in for another round of blood tests – the never ending post breast cancer treatment tests which are in addition to my 3 mo. follow up tests.
You know one of the saving graces of going through cancer treatment myself was thinking that I took the hit for the women in my life and no one else I knew would have to endure the ups and downs of surgery, chemo and radiation. And now that theory has been blown.
I also blogged http://www.kneedeepblog.com about my journey – it was the best therapy ever – so do keep blogging and reading and you’ll find other amazing women like you.
Always remember – your inner strength, courage, humor and beauty are so much stronger, resilient and alive then any thing that is happening right now – even if it doesn’t feel like it. And when all else fails, eat cheetos which for some reason always brought a smile to my face.
A big hug from Seattle! Love Michele