the element of surprise

I’m forever surprising myself. And life is forever surprising me.

When I blogged before my surgery, I was terrified. I wrote about how having a bilateral mastectomy resurrected this feeling of losing a part of myself, something I’d felt back when I was 16 and lost my hair because of chemo. I also wrote that all those years ago, when that gut-wrenching 5-minute experience with my mom shaving my head was over, I went back to my room, forced myself to look in the mirror, and was surprised… I looked good. I looked REALLY good. And the hardest part was over.

Last Thursday morning, as Dr. B wheeled me away from my parents, who could not hide their tears, and into the operating room, where I couldn’t hide my own, I grabbed my god-given, awesome boobs for the last time, looked at Dr. B, in her sweet, compassionate eyes, and I went to sleep.

In what felt like minutes, I was waking up. And the worst was truly over. Just like it was 17 years ago.

I expected to feel awful, 7 hours of surgery is LONG. I didn’t immediately feel so awful. The pain was very crazy, but I was coherent and drugged up. My mom and dad were on either side of me. I was cracking jokes, I couldn’t tell you what they were, but I know my parents, who love to act as if they’ve never heard or used a curse word in their lives, were half-laughing/half trying to pretend “she’s never like this it must be the anesthesia” (NOTE: I’m always like that). I kept asking my mom if she’d called my cousin Lauren, who was in charge of kicking off a phone chain to tell my closest friends and family I was out of surgery and recovering. More truthfully, I was demanding she call Lauren. She finally listened to me, and told Lauren, “She’s up, and she’s already ordering people around.” #ShesBack

image
me and peg, just before surgery, Aug. 6, 2015
image
me and MUR, just before surgery Aug. 6, 2015

When the nurses wheeled me into my room around 7 p.m., the first thing they did was check my vitals and my incisions. This meant they had to open up my gown and my surgical bra. I had no idea what to expect, but my spirits were up and I was feeling brave. The nurse said, you can look away if you want, and I said, “No fucking way.” (yes, I said the F-word). This was the moment of truth, how could I look away? Again, history repeated itself… the nurse said, “Just so you know… every nurse on this floor has boob envy.” And I understood why… my new boobies already look pretty fucking amazing. Holy cow. How do you spell relief…

More on the new boobs in a future post. Right now, most people are wondering, “So… how did you do?” Here’s how…

The first 12 hours post-surgery were quite possibly the most difficult of my life. I’m not really sure what “recovering remarkably” translates into, but I’m pretty sure I achieved it based on the reactions from the nursing staff, my doctors, my parents and my close friends. But for me, it also wasn’t like there was a choice. That’s how I’ve always been. Set a goal and shatter it. When you see a challenge, you tackle that shit… you move onto the next one, tackle that… wash, rinse, repeat. To me, this is just logical.

image

I only spent two nights in the hospital. I expected, and was told, I’d be there through the weekend. I left Saturday morning, as early as possible, and literally walked through the halls (politely) hounding the nurses to give me my discharge papers and remove my IV. I’m sure they loved that.

bitchcraft

Truth be told, my nurses at Huntington Hospital on Long Island were incredible, and that made a lot of the difference.

But that first night was so tough. My parents left and I was lucky enough to have my own room, but I was in excruciating pain, withdrawing from the enormous amount of anesthesia, I was catheterized and had a button to push any time the pain was unbearable. The medicine coming out of the pump (dilaudid/hydromorphone) was making me barf despite very effective anti-nausea medications (Zofran and compazine). My mouth constantly felt and tasted like sawdust, I could barely keep ice chips down, so the nurses wouldn’t give me any food to coat my stomach. I had to choose between pain management and constant barfing… isn’t this the picture of true glamour?

image
about 2 a.m. Aug. 7, 2015, dilaudid makin’ me grossie

I dealt with this for a few hours. I had removable oxygen tubes in both nostrils and compression cuffs on both legs to prevent blood clots. When you’re that uncomfortable, you just can’t sleep, and minutes start to feel like hours. I was antsy and my mind told me it was time to start moving, but my body wasn’t ready. It’s in those moments that you exercise mind over matter, like Uma in Kill Bill (wiggle your big toe). I knew the first big hurdle was walking, somewhere, anywhere. And at 430 a.m., I decided to try it.

believe

I’d been avoiding the pain pump, so my pain was high, but my stomach was cooperating. My nurse gave me a shot of Zofran so that when I went upright I wouldn’t lose my cookies. My teeth started chattering and my body started shaking as if it was hypothermic, a sign of anesthesia withdrawal and your body’s reaction to intense, uncontrolled pain. The nurse had me swing my legs to the left edge of the bed and helped me sit up… I got that far, gravity immediately settled in, and so did the weight of the 7 hours of tearing apart my torso… and it sort of resembled this. The pain was so incredible it brought me to sobs. The nurse urged me to press the pain pump until it stopped beeping (it locks you out automatically before you overdose). The pain subsided fast, the sobs took a little longer. I was out of breath, but the nurse was proud and supportive. First hurdle overcome. It hurt like a bastard, but it took all of a minute.

Next I actually had to walk. A huge wave of nausea washed over me (I def pressed the pain pump about 17 times) and I didn’t think I could stand. The nurse, in a way that only a brilliant nurse can, encouraged me by saying, “If sitting is all you can do, it’s more than you were doing a minute ago. We don’t have to go very far. We can sit here, or we can just walk a step or two to the chair and sit in it. It’s up to you.” A good compromise to walking out of the room, down the hall and back seemed like walking across the room to the sink, since I’d probably need to barf in it anyway. I stood up slowly. I waited, breathed away the urge to hurl, slowly walked to the sink and sucked on a few ice chips. I said, “That’s it, I’m good, please bring me back to bed.” Two steps back and I hurled into a bucket that the nurse got to me just in time. When I stopped, I wiped my face, took a breath and said, “OK, let’s go down the hall.” And the nurses BEAMED. They promised me, it only gets easier, and much easier, from here.

universe has my back

I slept intermittently into Friday morning, laying down was stiffening my entire upper body, but the nurses were right — things started improving quickly. And that’s because I kept moving.

Friday

The nurses brought me a bland breakfast, I ate half of it sitting in a chair next to my bed. Since I was eating and drinking, the nurse took out my catheter. I told them to get me off of the pain pump, and that meant they could also remove the annoying oxygen tubes. I started a new pain management cocktail and the compression bands on my legs came off. This was all within about 5 hours. I was feeling human again.

My best high school friends Jackie and Laura showed up, and they helped me get up, walk to the bathroom, I brushed my teeth (and did again probably a million times more that day), Jackie washed my face, they brushed my hair and helped me put it up. My cousin Lauren showed up and helped me ditch my hospital gown (it just makes you feel like a sick, incapable person walking around with a gown your ass hangs out of, let’s be real). She helped me into my real clothes. I was LOOKING human again. I sat up in bed, stood and walked a lot. I started stretching my arms lightly. My friend Laura came back that night with our friend Lysa. Nobody who visited came empty-handed. Everyone brought something I really needed: magazines, slippers, roll on antiperspirant (very important when you can’t lift your arms or feel your skin well), healthy snacks, light, soft PJs that would be easy to put on, the list goes on. I don’t know what I’d do without these girls.

357
Best friends (357 crew): Laura, Me, Jackie and Lysa, Aug. 21, 2010
mary lauren
my cousin Lauren, really my sister, and I in Aruba July 2009

Friday night, Duane stayed with me in the hospital. The poor guy barely slept and was so nervous I might break. He also brought me all kinds of things I’d forgotten that I really needed, helped me in and out of my bed, in the bathroom, with my hair, arranged pillows, carried things, drove me home to my parent’s house Saturday morning, ran to stores to buy stuff I realized I’d need, zip-front sport bras included (yes… for me, he was the creepy guy at Sport’s Authority way too early in the morning looking at bras).

The bottom line is, I did fabulously those first two days, and I never expected to. I owe this to the people who love me that showed up and helped me, physically and digitally. I had wifi the entire time (talk about something incredible to pass the hours I was awake). My social media notifications were in the several hundreds, as were my text messages. A lot of people couldn’t believe I was up and so active, so responsive. Many said I was an inspiration… you know what? The love inspired ME and distracted me from focusing on my pain. Love makes the world go round, and when you have a team of thousands routing for you, anything is possible. Saying I’m grateful does no justice to how I really feel to each and every one of you.

My parting words on this part of the adventure are, when you give love you get love. We can waste time worrying and contemplating and obsessing and jumping from one foot to the other, or we can set our minds to a desired outcome, say it out loud to the world with love and commitment, and be open to the possibility that things may not go as badly as we suspect. You MAY just be surprised.

Just like anything else in life, INCHES MAKE CHAMPIONS. Small steps turn into several steps. The time is going to pass anyway, you may as well be productive and working towards your goal, in my case, nearly perfect health of mind, body and spirit. And I wish all of that for you too ❤

so, I have cancer… again.

A lot of big things happened for me in June, but the most significant was ironic… June marked my 17th year in remission for Hodgkin’s Disease. This past June I received my second cancer diagnosis: ductal carcinoma in situ (DCIS) in my left breast. Stage 0, non-life threatening and non-invasive breast cancer, found because I’ve had mammograms/MRIs annually since age 24. To prevent recurrence, I will have a bilateral mastectomy on August 6. Reconstruction will begin at the same time.
Holy shit. Buckle up.
buckle up
driving to the Jersey Shore at 8 a.m. on May 23, 2015… still blissfully unaware I even have breast cancer.
Like I was told so many years ago, my breast surgeon said, “You are lucky. Your cancer was caught early. You will be cured. But, your road ahead will be tough.” Dealing with chemo and radiation in high school WAS tough. I’m relieved I don’t need it again , but a bilateral mastectomy with reconstruction starting in August is a whole different kind of tough.
I’m aware that not everyone knows my story from the beginning, and that has everything to do with the present, so like any story, I’ll start from the beginning… get a beverage of your choice, this post will be the longest one.
I have no family history of cancer. I was diagnosed just days before my 16th birthday with stage 1A Hodgkin’s Disease. I’ll never forget the moment the oncologist said, you have Hodgkin’s Disease, and the sound of my mother’s breathing as we processed that… I had no idea what the doctor was talking about, I had no idea he was even an oncologist, until I heard the words “chemotherapy and radiation.” Then I understood everything. And I was mad. I was so mad. The doctor was talking, but I heard nothing. Then he looked me in the eye and said, “This is going to be a tough 6 months, but after it’s over, you’re going to be cured.” And I thought, well, my sweet 16 is in two days. At least I can party like a rockstar, in a beautiful dress, with my closest friends and family, before all of my hair falls out and I spend the next several months barfing. The thoughts of a teenager…
After one surgery, a bone marrow biopsy, dozens of scans, 3 cycles of chemo, 14 days of radiation and one last surgery to remove my mediport, I WAS cured, for all intents and purposes… but by no means was I done with cancer.
Those 6 months WERE tough. Chemotherapy is disgusting, and not just because you feel nauseous and lose your hair. You lose your taste buds. You’re on a ton of daily medications to prevent infections. You’re given steroids which bloat you and keep you up all night. Your face becomes round and your eyes get dark. You are tired. You have to give yourself daily shots to boost your white blood cells to fight infections. Those shots make your joints weak and your knees give out (your bone marrow is tired from overproducing). Chemo stops your hormones, so my body went into early menopause and I had hot flashes day and night. You can’t be around germy things. If you develop a fever of 100, you have to go to the hospital. Luckily I was never admitted, I came close once.
I was optimistic through the entire experience. I was being treated in the pediatric ward at LIJ, surrounded by children and babies who were much sicker than I was. Some would never leave the hospital. Some would never reach their 16th birthdays. I had so much to be grateful for, and still do. I would be cured. And I never forgot that. Over the years, people have told me how strong I am. My response is, how can you be anything less when you see children, who only know the inside of a hospital and still manage to laugh, smile, play, hug their parents, share their toys and be brave through all the needles, and overnights, and pain. You learn to be strong right away.
I saw the bright side of chemo. No hormones means no monthly period. FLAWLESS skin on what used to be a broken out adolescent face. No hair anywhere, I loved not having to shave my legs. And a shrinking tumor with each cycle. My treatments were working. They were also creating long-term risks I would have to stay on top of for the rest of my life.
  • Hypothyroidism and potentially thyroid cancer
  • Cardiovascular problems
  • Susceptibility to bad sunburns
  • Bone density issues
  • And breast cancer… a 20-30% increased risk
All because of those 14 days of radiation.
In the last 17 years I’ve had countless chest x-rays, blood tests, cat scans, pet scans, gallium scans, EKGs, echo cardiograms, stress tests, ultrasounds and mammograms/breast MRIs. I’ve had more health scares than I can count. I’ve spent thousands of hours convincing health insurance companies to cover these tests, as if they’re elective. I’ve spent even more time navigating what it’s like to be treated as an adult, no longer a pediatric patient. I learned that sadly, most healthcare administrators don’t care enough to go beyond their most basic duties. Medical records gets lost, messages get lost, doctors forget to call you back, they forget to remind you to come for your annuals. You fall through the cracks of our unfortunate healthcare system, as if you have time to make sure healthcare professionals are doing their jobs. You have to be your own advocate, you have to raise your voice, you have to be assertive, direct and sometimes rude. Thank goodness LIJ enrolled me in their survivorship program once my 10-year remission visit was completed. They handed me a roadmap to ensure I stay healthy and this has been invaluable. They still keep in touch.
In 2009 I had a private reading with a medium who pointed to the spot on my left breast where the DCIS was just found. She told me, there’s a lump there. I told her I’d just had my mammo/MRI and all was clean. She said, if you don’t have it now, you will. It’s going to be fine, cancer isn’t taking you down, just be prepared.
In 2011 an ultrasound of my thyroid showed a tiny nodule that my endocrinologist insisted on biopsying, given my history. This came back atypical and without question, the recommendation was to remove the entire thyroid. It was already barely functioning and if there was one nodule, there would be more in my future. First broken body part removed…
In 2012 when I went for my mammo/MRI, the radiologist said he wanted to do a quick ultrasound. I couldn’t believe my ears, even though the medium had prepared me years prior. They focused on the spot in my left breast where she had pointed to, but said nothing to me. When I started asking questions about how big it was, the radiologist looked at me, shocked, and asked if I felt anything, did I have any pain. I just said no, you wouldn’t believe me if I told you. He said, I can only describe what I we see as a cluster of cells. We’re not sure what it is, you are young, your breast tissue is dense. It’s something we should monitor, come back in 6 months. After two more MRIs, and no more changes, I was told to resume my annuals.
This past March I had my mammo/MRI. About a week later I received a notice from my post office that someone (recipient not disclosed) was trying to send me a certified letter… could have been from anyone. I work M-F, 9-5 and am never home to accept a certified letter. Those are also the post office’s hours. When would I ever be able to get this letter? And why should I make it a priority? I had no urgency to do so since I didn’t know who was sending it. I never received one phone call from a doctor, why would I have any reason to believe it was from mine?
Almost a month later, on a Saturday before a business trip to Las Vegas, I made it to the post office before noon. I was handed one envelope, with two letters in it. The first read, your mammo came back fine, please come back next year. The second letter read, your MRI was abnormal, please follow up with your doctor ASAP. HUH? Did the person stuffing the envelopes even read them? Did the person typing the generic shitty template put two and two together? DID ANYONE TRY TO CALL ME? The next business day, from my hotel in Vegas, I spent several hours trying to connect the dots. What were my next steps? What does “abnormal” mean? Why hadn’t the radiologist just done an ultrasound like he had in the past on the same day I’d had my MRI? I spoke with the OBGYN who had ordered the MRI, and the radiologist office who performed it. Nobody could give me a straight answer, nobody would take responsibility for never having called me, nobody could tell me how I’d fallen so far through their cracks, but after two hours, they finally confirmed, you actually don’t just need an ultrasound, you need a biopsy. The cells grew.
Then, shit got pretty gangster. People started doing their jobs really quickly. Or so I thought.
classy woman little hood
I had an MRI-guided biopsy on May 1. A few days later, my (incompetent) OBGYN called with the results. She was a day early, so I knew it wasn’t good news. In her bubbly, amateur voice, she said, “I have GREAT news and some not so great news. The GREAT news is, you don’t have breast cancer, so that should be a relief… BUT, you have atypical cells, so you really should follow up with a breast specialist, I can recommend someone in the area for you.”
No thanks doc, I’ve got this.
I called my mom. I made an appointment with a breast surgeon on Long Island to appease her, and another closer to where I live upstate. In my mind, I trusted what the medium had said. This was not the end of the world, I was going to be just fine, but what I had to deal with was just an inconvenience. I had already decided to have a lumpectomy. I didn’t want atypical cells turning into something worse.
My appointment with the LI breast surgeon, Dr. B, was June 1. Weeks prior I had requested to have my medical records sent to her in advance, and the radiologist’s office sent them to the wrong office. More frustration, more waiting… I finally went into the exam room and Dr. B asked what brought me to her. I told her a biopsy had shown atypical cells. After a few minutes, she asked me to dress and meet her in her office where we could talk. In there, she told me, “I don’t know who told you you have atypia, that was wrong information. This is more serious. You have DCIS, it is early stage breast cancer that requires treatment, and there are a few options we need to discuss…”
And all of a sudden, I was right back in that moment. I heard my mom’s breathing. She grabbed my hand. I completely lost my shit. Except this time, I heard every word the doctor said, because when you’ve been where I’ve been, and know what I know about the healthcare system, you pay attention.
A lumpectomy was an option, but only if followed by radiation, which is what landed me here in the first place. Another alternative was to follow a lumpectomy with 5-10 years of tamoxifen, a good drug, but one that would mean no children (you cannot be pregnant on tamoxifen). At 33-years-old, that is not an option for me.
Bilateral mastectomy it is. I don’t want to worry about breast cancer ever again.
This is just the tip of the iceburg. There is much more to tell, but this was a lot… process it. I’ve learned a lot of lessons, some of which you may have picked up from this first post, but more that I will share as this ride continues. When all else fails, you know what? You just gotta be tough. #BOOM
bad ass