I have IT

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On July 14th I was diagnosed with Stage 3a Invasive Ductal Carcinoma in my right breast and lymph nodes. Or, as I like to tell Otis—“I have a booboo in my boobie.” Today I met my oncologist for the first time and we have a plan of attack. Tomorrow morning at 5:30am I will get a port placed in my chest. On Tuesday august 16th (my 35th Birthday woohoo) I will go to Chemo School and start chemo on Wednesday. This year of my life will be dedicated entirely to fighting the good fight and healing.

Last week my dad stood up in front of our family and friends and spoke of my courage, something he says I was born with. The reality is I have no idea if I have courage in the face of pain, discomfort, and fear. Sure, I’m always up for an adventure, but I’m not sure if I have the courage to fight this with grace and humility. This blog isn’t meant to be an inspiration. It’s a way of conveniently updating my friends and loved ones of my journey.

I promise my future posts won’t be as long and detailed. This is just a way for me to bring everyone up to speed.

I first noticed something was weird while my family was on a trip to Colorado on June 25th. It was about a month after I had stopped breast feeding Luna and one breast still felt heavy, like it was still making milk. A week later I was in an appointment with my gastroenterologist discussing lifestyle changes I was making to control acid reflux, and I mentioned the bump. He sent my straight over to the breast center to have it checked out. The surgical oncologist there examined me and kept me in his office for a mammogram and ultrasound. I expertly told the interns, the doctors, and the technicians that I had a clogged milk duct that needed to be drained.

The results of those tests showed “calcifications”. Sounds like something that a clogged milk duct would have, right?  When the breast MRI and biopsy were scheduled, I continued to ask if they could drain that stubborn milk when they were in there with the needle. They went into 3 biopsy sights and took about 5 samples from each site—one lump in the center of my breast and 2 smaller lumps in my arm pit. They used a mammogram machine for one site and an ultrasound for the other two. My main question—can I still go on our mega family trip in a week? The answer- you should rethink your trip.

We were feeding the kids dinner around 6pm on July 14th when we got the call from the doctor. CANCER. In the breast tissue and the lymph nodes. In all 15 samples that were collected. I sat in the middle of the floor and held my babies, or rather, they held me. After we put them down tearfully, I stood in my closet and wondered what I should wear to tell my parents their baby has cancer. It felt important to look healthy and hopeful.

“I have it.”

It took me a few days before I could say the word CANCER.

It’s really hard to tell people you love that you have cancer.

My sister knew when she saw us at the door at 9pm, her hand covering her mouth, tears in her eyes as she opened the door and pulled me towards her.

The next few days were spent breaking the bad news to friends, family, a few strangers, emails, calls, texts, hearing stories of other people they know with cancer, hearing that everything will be fine and I will be a better person afterwards, hearing how shitty my life will be in chemo, hearing how strong I am, hearing that they never expected it would be me, wondering about what caused this, fearing the burden this will be on those closest to me, being utterly overwhelmed by love and support—over and over again. It was easier for me to be the positive one and cheer someone up, it was harder when I was in the position of toning down the positivity. I spoke with one person currently in treatment, my friend’s aunt. She mentioned that she loves her doctor at Touro and an hour later on a Sunday night I got a call from his nurse who walked me through my diagnosis, and the next steps. I was sold on her kindness.

My parents, my husband, and my sister came with me to my official first appointment as a cancer patient at Ochsner. The nurse complained that we were too many people for the room. The two doctors that I saw, a surgeon and an oncologist, were Dr. Doom and Dr. Gloom. We learned that if the upcoming body scan showed cancer anywhere else in my body, my case would not be curable. And they gave the thumbs down to going on our mega trip—major party poopers these guys. Oh, and did I mention how many times they said “chemical castration”- at least 5 times. They also both said there wasn’t any nutritional advice they could give; I would be able to eat and drink whatever I like though treatment and beyond.

Body scan Thursday started with a lovely puja at the shop with Chamtrul Rinpoche. We were reminded to pray to end the suffering of all sentient beings, not just mine. There was a lot riding on the body scan, radioactive IV and lots of Om Mani Padme Hums in the machine and a Clean as a Whistle report. This news gave my mom the false impression that I was in fact, clean as a whistle and she ran around the hospital telling people that we had cancer but we were clean!

On Friday we jetted off to Mustique for 2 full weeks of love, family, friends, my mom’s 70th birthday, my daughter’s 1st birthday, fresh food and drinks, golf cart rides and riding waves. I will hopefully write more about our trip when I need to go back there in my mind.

While I was in Mustique, we got word that I was accepted for a second opinion at MD Anderson, and another second opinion through the medical service Grand Rounds.

Walking around MD Anderson I felt like I needed to be there, its a mega magnet for cancer people. It’s a whole city of cancer. My doctor said there was no need to get my treatment there. She spent hours walking me through the details of my diagnosis, her medical advice, the data and research to back it, the side effects. She said this was curable and sent me back home with my head a little higher and a little bigger. Oh- I also got a wig, breakfast in bed, a few tears and few chuckles out of Houston.

And today! Finally getting caught up to speed here. Today my team and my plan fell into place. My surgical oncologist walked me through the process of installing a port (in my chest and up through my neck into a big ol’ vein). No exercising or lifting anything more than 5 pounds for 2 weeks.

My oncologist walked me through our down n’ dirty chemo plan. I’m ER/PR positive and Her-2 negative.

adriamcyin/cyclophosphamide (called AC) every 2 weeks for 2 months.

followed by paclitaxel every 2 weeks for 2 months

If everything goes according to the plan without any hiccups I might finish up chemo right before Christmas! Month to recover. Unilateral Mastectomy (or possibly double). Recover from that. Radiation. Recover. Reconstruction surgery.

That’s a lot of information! This should have been 5 separate posts.

How am I doing? I’m relieved to have a plan and a timeline. I’m confident in my team of doctors. I feel healthy and strong and ready to get the shit kicked out of me. I get sad for Sean, and my family, the people that will have to watch me suffer and wipe my snotty nose. I am sad for my babies. It’s hard enough as a healthy mom to feel like you are doing enough for your kids, and they will only have a weak, tired, bald, sick, caricature of the mom that they knew. They still need to be held, rocked, have their noses wiped, their butts wiped, their boo boos kissed, they need to be chased, tickled, buckled into car seats, physically restrained from getting into trouble. I’m not sure what I will be able to do with—and for them. Asking for help has always been a huge challenge for me, but I know I will need it, and I know I will have it.

It’s a shitty thing but at the end of the day I feel so utterly incredibly whole heartedly GRATEFUL.

7 thoughts on “I have IT

  1. Courtney sutton August 11, 2016 / 5:30 pm

    Thanks for doing this! Sounds just like you & your wonderful spirit. It’s a long road, and there will be lots of us along to help out. Reminds me of how someone just said when you send your kids to school it’s like a little piece of your heart goes with them & is running around all day sharing their joy. Your kids have huge pieces of your joyful heart and you also have tons of pieces of everyone’s heart sharing your journey & offering whatever you need on that day.

    Like

  2. Claire Meunier August 12, 2016 / 8:39 pm

    You Winingder’s (and Fisher’s!) do amazing things with whatever cause or challenge presents itself and I know this journey will be no exception. We are all behind you, in front of you and beside you the whole way. I’m rooting for you sister and will gladly be there to hold those babies and run around with them as your entertainment when you don’t have the energy to do it yourself! For now, enjoy the rest and the Olympics– Simone Biles and Michael Phelps are DEFINITELY good medicine for the body and soul. XO

    Like

  3. Jennifer Winingder August 13, 2016 / 1:22 am

    Beautifully expressed so glad you are writing about this journey. I shared this with some of my friends hope that’s ok. You really truly are inspriring to me not just saying that love you!

    Like

    • Minnie Coleman August 14, 2016 / 4:40 am

      Your description is just as free as you are ..so grateful to have your voice in print along with your essential sense of humor ” I have a Boo Boo on my Boobie ! Warm blankets of love surround you.

      Like

  4. Allison Schiller August 16, 2016 / 3:25 pm

    So beautiful! Thank you for sharing, Diana. you are an amazing person (and writer). PLEASE let us know if we can be helpful in any way. You and Sean and the kids are truly gorgeous people, and we are sending our healthiest, healing-ist vibes.

    Like

  5. Ida August 17, 2016 / 12:33 am

    My dearest darling God daughter Diana . The news of today about your breast cancer and what you already have gone through had numb me .
    Indeed I am so proud of you and you are a survivor like your God mother Ida .
    I know about your cancer too well . I know well that you will be cured and will live a very long life and see a lot of fabulous celebrations in life . I promise you .
    Having gone through this in 2009-2010 , I can promise that the treatments are even much more effective .
    Believe me if I tell you that chemo is not such a horrible thing . Now they prepare you with anti nausea drugs and steroids which will keep you very strong . You will be fine , come home and rest or just take it easy .
    The surgery is next . You can do both Brest removal and since you are young , they can prepare your chest cavity for new Brest implants , so that will be ok in time .
    To me radiation was the challenging .
    After the second week I was exhausted , depends if you have one month or two month regiment . It will be over . Just rest .
    You might have burn in your chest and they will give you creams and it will be fine . It’s like a sun burn .
    Diana djan , please contact me any time . I am with you every minute of this journey . I promise you next year you will be fine . They will most probably put you on tomaxifin for ten years and that’s no big deal . I am on it now for 7 years . I love you always , just smile , this is just a bump . Love you my darling God Doughter . 917-902-2001

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  6. Katherine Wolf Hoag August 17, 2016 / 1:31 am

    Hi Diana. I remember you as a spunky little girl running through the halls of Trinity. My brother, William Wolf shared your news with me. I was diagnosed on September 16, 2013, just a few weeks before my 35th birthday. I even got my port for my birthday! I did chemo, surgery, radiation, and then reconstruction at MDA with 3 small kids and a husband at home. I just wanted to let you know if you ever want to talk about what to expect with any of this I’m always available. It helped me to talk to my friends who had been through it before.

    This next year will be tough, but when you look back you’ll realize how truly GRATEFUL you are! You are right, you got this! Kick cancer’s ass girl! Your attitude will push you through!

    Like

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