Annmarieg
Ann Marie Giannino-Otis
Fighter: Breast Cancer (Stage I)
Get and/or give support
Fayetteville, NY
Female
About Me
My Journal
I am a Fighter
Type of Cancer
Breast Cancer (Stage I), 2012
Treatment Information
Stage of Treatment:

Finished treatment less than 5 years ago

Treatment Types:

Lymphedema Management

Lymph Node Biopsy

Radiation Therapy

Unilateral (Single) Mastectomy

Hospital:

N/A

Side Effect:

Anxiety

Body Aches

Fatigue/Weakness

Insomnia

Lymphedema

Neuropathy

Load More
Perspective
March 3rd, 2021

It's been forever since I've written and I'm not really sure why I guess I am busy, covid, kids-ya know life. I've been dancing with NED for  a month now and it's been truly surreal. I do feel as though so I got a bit of my life back almost like I feel alive again. Does that mean I don't think about cancer and what it's done to me the past 8 years absofuckinglutly not. The reality is it still looming in the background. Through this ridiculous pandemic that's going on, no hate I know it's a thing it just took it in a different way because ya know-Cancer is still part of my life. I found myself like “screw you covid- I had cancer I sure as fuck am not going to let covid kill me”. I think a lot of us in the cancer world found ourselves saying that. But I started to think what the hell has happened these past 8 years. So much has happened and truthfully it is all on cancer. 

 

It all hit me last night when I had a headache. I've always had headaches. I haven't had a brain MRI in a long time and it doesn't usually stress me out but for some reason last night it did. What people don't realize is when you have a PET scan it is from your neck to about your upper thigh -does not hit your brain.  So I started to freak out if they missed my brain and it's headache is really brain METS. Now two things here first of all I know that many people find their brain METS this way. I totally get it, that's not what this blog post is about though. This is about the fact that every ache or pain will always be “could it be cancer coming back”. Like I'm serious every pain I don't care if it's a hangnail or you stub your toe and all the sudden you have extreme pain in your foot after having a cancer diagnosis the fear of it coming back never goes away. 

 

Maybe I'm feeling this way because my 8-year anniversary is coming up. Next week will be 8 years that I had my lumpectomy and they told me “it's nothing, don't stress about it”. So I went to that doctor's appointment by myself to get the results. I remember it like it was yesterday seeing my doctor walking in the door and saying I wish you weren't my first appointment. I knew right away what was going to happen so I looked at her and said “why because it's cancer?”. Funny cause we all sort of have that feeling whether we have a biopsy or testing that it could be cancer but no matter what you think just maybe it is nothing. But deep down you know. After hearing those words the rest is like a dream big nasty fucking dream.  You hope you're going to wake up from that nasty dream but then you realise, nope here to stay. I remember having the attitude that I will just get this shit over with and I can get on with my life. How freaking naive I was. I now know that cancer does not leave you but you can learn to live with the stupid dumb fool.  My perspective changed so much. 

 

My very close friends now I'm a worrier it's just how I am. The funny thing is I worry more about other people.  I can make a whole story in my head about how someone simply going to work, a drive they do everyday; hit a bump, car flipped, went into a ravine, they can't get to their phone and they're going to die because no one knows where they are-in a heartbeat. I just worry about others, it's truly who I am. I don't necessarily worry about myself. Part of that is because I have faced death so many times I just don't think about it. Living with depression and suicidal thoughts I had many a moment where I just was like ok cancer just kill me and let’s be done. That way people would not worry about me. I had a hard time letting my friends and family worried about me during my diagnosis. I was the worrier who took care of them. I didn't like it being flipped onto me. It was very hard for me to let them take care of me. After all, how many times did they all tell me how strong I was? This isn't a dig it is just hard to be taken care of when you are “strong”.  I realize that being strong is about getting help. Again my perspective changed. 

 

Cancer affects you physically there is no doubt there we can see it. They forgot to send the memo about cancer and the mind fuck it does to you. Self body image is screwed up, depression/anxiety is peaked, PTSD is no joke, anger mixed with happiness is confusing- just to name a few. Cancer is scary as hell and there is no rule book about it. I learned that every emotion is valid and ok for you to have. I went and got therapy, support groups and kept SDBC going for me. SDBC is just as much my therapy as it is for those asking questions. I started to see those “cancer free” moments and I held them. The times when I am laughing, singing, cooking and there is not one single cancer thought in my head. I had to change my perspective and embrace these moments. 

 

Now one thing remained the same. This tiara has never left me. Maybe it needed polishing or to be straightened but it remains. I am not any stronger or braver than anyone else going through this. I am just a North Side, Italian girl who has changed her perspective but is bringing herself back-tiara, stilettos and all.

And then I got cancer
March 3rd, 2021

And then I got cancer

One year after the cancer diagnosis that sent my life spinning into uncharted territories, my oncologist patted me on the back, told me he’d see me next year, and sent me on my way. I left his office, drove home, sat down on my couch, and sobbed for two hours. Ugly crying. Uncontrollable ugly crying. For two straight hours.

What the fuck had just happened to me?

From the outside, and certainly to my oncologist, it must have looked like I was in the home stretch of a scary chapter in my otherwise pretty good life. I had gone through surgeries and radiation treatments, facing my fears and medical challenges with the determined bravado I assumed was expected of anyone in my place. My four kids gave me a reason to look forward, my dear friends stepped up to help, and my dad and siblings lived close enough for regular visits. I had a roof over my head and decent health insurance. In the midst of my battles I had even managed to start up an advocacy organization to support other cancer patients and their families. Over the past twelve months, I had been called “brave,” “strong,” and “an inspiration,” but I felt like I was none of that. That morning, after receiving the news that I was cancer-free, I could have felt relieved, maybe even joyful. Instead, I felt mentally drained and emotionally untethered.

As I sat drenched in tears and snot, it occurred to me that, through it all, not one person had asked me about my mental state. To be clear, I am not just a cancer survivor. I am a suicide attempt survivor. I am a rape survivor. I live with depression and anxiety . My mental illness “rap sheet” is diverse and lengthy. In fact, when I was diagnosed with cancer, I was barely a year into my recovery from a dangerous bout of post-partum depression that had wreaked havoc on my marriage and my family life. I had been perilously close to the edge of suicide. Despite outward appearances, the fight to reclaim my life wasn’t over.

A year earlier, in the weeks before my cancer diagnosis, I thought I was doing a fairly good job of putting my last breakdown behind me. Mentally, I was feeling okay. Physically, I felt good—I had gained weight; I felt strong. With the help of medications and lots of therapy, I had clawed my way back into a life and routine that was working for me. The diagnosis hit me like a friend’s betrayal. Suddenly, the body that I’d always turned to for sanctuary was no longer my ally. Once again, I felt like a failure.

I was no stranger to self-defeating thoughts, but now my body seemed to be confirming the worst of them: I got cancer because I didn’t breastfeed long enough. I had multiple pregnancies and multiple miscarriages. I smoked cigarettes. I ate too much sugar. I didn’t pray enough. I was a bitch. In other words, the disease was my fault. In hindsight, that kind of thinking seems ridiculous, but at the time it felt completely rational. Later, when I shared these feelings about my cancer with others, I discovered that it’s a common, even expected, response but at the time, I felt like I was completely alone.

As the youngest of three siblings in a family forever damaged by the violent murder of my mother when I was less than a year old, I grew up with an unspoken understanding that my role was to lift everyone else up. After her death, our family and friends sought consolation in my innocence and in my obliviousness to the tragedy that now encompassed us. “The baby will help us!” “AnnMarie is so funny; she’ll cheer us up!” I always sensed that I had a job to do, even though I was too young to know what had happened to my mother. I wasn’t told about the circumstances of her death until I was almost ten years old. No one talked about it; they had lived it. They didn’t want to talk about it. They still don’t.

Growing up without a mother defined me. To compensate, I surrounded myself with substitutes—my grandmother, my aunts, my godmothers, my girlfriends’ mothers. When I was little, I made up scenarios about running into my mother. She isn’t dead, she just has amnesia. Maybe I’ll see her in the grocery store, and she will know me immediately. Her memory will come flooding back, and we will be reunited! I didn’t tell anyone about my fantasies, because I was just a baby when she died. I believed I wasn’t entitled to miss her, because I have no real memories of when she was alive—things like how she smiled, what she smelled like, or the sound of her voice—but the reality is; her sudden disappearance must have been devastating to me, to Baby AnnMarie who experienced a life-changing tragedy that no one talked about.

When I was a teenager, I tried to kill myself twice. No one ever talked about that either. They assumed I had just overdosed on drugs. They called me wild and said I was on the wrong path, but nobody ever thought to ask why. I was treated for addiction , but my depression was never acknowledged. I was depressed in part because everyone expected me to be happy. I had to live up to my pre-defined destiny. I couldn’t notbe the life of the party. It was my job to make everyone laugh. 

To this day, I love that part of who I am. It makes me feel good to make other people feel good. That, in turn, helps my depression. But appearances can be deceiving—acting out and yucking it up doesn’t look like depression. Most people think depression means lying in bed for days, refusing to shower, sitting alone in a room with the shades drawn. That wasn’t me. I was lively, fun-loving AnnMarie, hiding the truth about how I felt from myself and from everybody else.
At fifteen years old, I was raped at a party. I had gotten drunk and was flirting with a guy that I knew was trouble because my soon-to-be ex-boyfriend hated him. It didn’t last long, but when it was over, my rapist looked down at me and said, “You’re not worth it.” Then he got up and walked away. I believed him. The incident left me with riddled with Ptsd and anxiety. Shortly thereafter, I made my first suicide attempt. Years later, when my older sons hit their mid-teens, I had panic attacks inspired by an irrational fear that they would rape someone.

After I was married, my pursuit of my ideal motherhood was ferocious. Acutely aware of my own mother’s absence, I was determined to be the best mother, and my expectations of myself were impossibly high. Clinging to the tiny bits and pieces I knew about her—she was a go-getter who chaired committees; she was a fashionista who ran a hair salon in her basement; her nieces and nephews adored her; my father adored her—I did everything to live up to who I thought she had been.

 

I was a good mother, but beneath the surface, I felt like a failure. I nursed Ben for “too long” and put Sammy on a bottle “too soon.” After the first two kids, punctuated by multiple miscarriages (more failure!), I stopped making baby food from scratch and started using jarred food instead. Ben started showing signs of OCD at about 18 months; I blamed myself. My pregnancy with my third son, Anthony, was miserable and his delivery was traumatic. He was a happy baby, but he was always on the move. Unlike Ben and Sam, he didn’t go to bed without a fight, and wouldn’t sleep through the night. I assumed I was doing something wrong. As always, I felt my mother’s absence; she would have had the answers I needed. I ached to know if her experiences with motherhood were similar to mine or completely different.

My pregnancy with my fourth son, Julian, was a happy surprise, but, just before I gave birth, my grandmother, who had helped to raise me, had a heart attack and passed away. Because I was nine months pregnant and they didn’t want to upset me, my family delayed telling me that she was in the hospital. By the time I got there, she was gone. I never had a chance to say good-bye. I was hurt, angry, and devastated. When Julian arrived, he was extraordinarily clingy. He wouldn’t let me leave him, ever. Whether he was with my husband, a babysitter, or the childcare at the Y, I would inevitably get a call: “He won’t stop crying. You have to come back.”I know now that this is part of the mental illness he suffers, but at the time I felt suffocated. I felt like I needed to free myself. I felt like a failure.

 

By the time Julian was around two-and-a-half, I felt myself breaking. I was exercising two to four hours a day and weighed 87 pounds. I ate bags of Skittles for breakfast, lunch, and dinner. My insomnia was through the roof. Alone with my kids during the day, I felt like the walls were closing in on me. When I tried to bring up my declining mental state to the people around me, they dismissed my growing panic. “Oh, you’re fine. You just need to get out and spend some time with your girlfriends.” So, I lurched back into my pre-motherhood comfort zone: out every weekend, life of the party, wild and crazy AnnMarie.

I started having suicidal thoughts again. I knew why I had to do it. I was exhausted and nobody was listening. No one saw my side. I looked around at my friends and they all seemed to be doing just fine. I felt like I was all alone. I felt like I was crumbling. I started formulating my escape; I made a step-by-step plan for taking my own life.

When I finally admitted to myself that I needed professional intervention, my life broke wide open. I had decided to seek help at a professional treatment center in another part of the country, but my husband didn’t understand my urgency or welcome the expense. I got a friend to drive me to the airport. Baffled and perturbed, Tom phoned me while I was waiting for my flight to be called. He told me to come home, that he might want a divorce. I didn’t get on the plane. 

When I got back to the house, we launched into a full-on argument. It was ugly, and I knew as it happened that I was going to complete my well-laid plan to kill myself. Despite the horrible moment we were having, I had the presence of mind to tell Tom what I was thinking. I asked him to drive me to my therapist immediately, and even though he didn’t understand what was going on in my head, he drove me there. When I told her that I had a suicide plan and that I was ready to act on it, she checked me into the hospital for a mental health assessment.

After hours alone in a room with only a mattress, the clothes on my back, and the unyielding stare of the police officer assigned to watch over me, I got a bed in the psych ward at about two in the morning. Looking around me, I saw disheveled people talking to themselves. There was a man running screaming down the hall, with several staff members chasing after him. Here I was; a soccer mom from a nice little suburb in Central New York, surrounded by mayhem, confined at my own request, because I was afraid I would harm myself. Yet again, I felt like a failure.

I did my time in the hospital, figured out my meds, made the most of group therapy, and came home. I worked hard to recover. I felt better. And then I got cancer.

I had a lumpectomy. 

I had a double mastectomy. 

I had radiation. 

I had reconstructive surgery, which failed, so I had to have it reversed. 

 

In the wake of my treatments for cancer, I developed lymphedema. By the time I found myself sitting in my oncologist’s office for the one-year follow-up, listening to him congratulate me on a job well done, I was experiencing a shit-storm of side effects. My whole right side was numb. I had pain that I couldn’t explain. When I tried to talk about it, I was told it was all in my head. “It’s stress.” “Take a muscle relaxer.”“You’ll be fine!” As a woman with paranoia and a lifetime of feeling unworthy, who lacks confidence and assumes that other people are all smarter than me, I believed them. I let it go. A year later, I would be diagnosed with multiple sclerosis.

I’d like to say that my two-hour torrent of tears had a healing effect on my spirit, if not my body, but I don’t think it did. Yes, it was a much-needed release, but as the wave of emotion faded, what I experienced felt more like resignation. I was still fighting for my life. Despite glib reassurances from all sides, I had work to do, and I had to do it myself. My kids need their mom. I had an organization to run, a network of people that relied on me, and dinner to cook. “I am worthy,” I told myself and took one more deep breath. Then I stood up and began again the relentless uphill battle of convincing myself that it was true.

 

I started blogging to keep my family and friends informed about what I was going through and unintentionally discovered that my story matters to people that I don’t even know. I began to work as an on-call advocate for organizations that support cancer patients and their families. I started receiving invitations to speak about cancer and, later, about mental health issues, at conferences and seminars. All of it helped me to heal. But was it ever enough?

One friend, who has since passed away, encouraged me to continue speaking out. “Be my voice,” she urged. Today, whenever I Tweet, or post a new blog entry, or speak at an event, someone reaches out to tell me how deeply my words resonate. When I engage with people who are suffering, and when I can help someone feel less alone, I am filled with relief. My voice matters. What I have to say about my experience is vitally important. And speaking out for someone who can’t speak up is hands down the best therapy I’ve ever had. I would miss that feeling so incredibly much. I would miss the part of me that some may not understand the part that makes me who I am. I would miss knowing I am worthy.

 

 

 

Dear Cancer
January 15th, 2016

Dear Cancer

Dear Cancer,

When you came rushing into my life I had no idea how long you would be here, I thought you were a one and done thing. I remember saying “I just want to cut it out and be done”. Well, the joke was on me, you played that well. Three years later I am still dealing with your dumb ass. Tomorrow I will have surgery to remove the painful, last 4 inches in scar you left behind that keep setting off the MRI, then off to radiation. You really enjoy making life hell. I wish I could say I am so done with you but I have realized something over these years, it is a lifelong thing this relationship.

 

 

Here is the kicker though-you still do not win. Yes, you stole my friends from this earth and I am disgusted by that for sure, it makes me want revenge and that is a big mistake on your part. What you do to those with metastatic cancer is inexcusable and the fear you set in for us that are now at 30% risk of it spreading is warped! But every time we live our life in spite of the pain we win, not you. When we go to the doctors and hear NED it is us that is victorious. I hear our metster friends with stable scans and see the winning in them not you not even for a moment. Every time we bond as friends because you came crashing in we are the winners not you. That is the biggest victory and one you can not ever take from us.

 

See you may think you are doing such a great job by giving us all the after effects but we overcome them by living our life anyway. Depression, weight gain, lymphedema, pain, neuropathy we get but we take it create a new normal just to stick it to you. I see my Stage 4 extended family going on trips and I laugh in your face. I see my friends at chemo smiling and singing and crack up at how you are trying to take them down but you can not. And when my friends are tired and crying we as a cancer family are there to hold them I think screw you cancer you can not win because we are united. Brave has many faces and it breathes in everyone of us in death, you are not brave but a coward with nothing to back you up.

 

No there is not a cure for you yet or a way to prevent your stupid ass from entering our body but we are making strides in banning together to get the word out that research not ribbons is the key. Now more than ever we have options at our disposal, like clinical trials, that help make treatment advancements possible. We are determined to show the world that cancer is not pretty all tied in a bow that you are an ugly beast with death in your path. Once they see that you are over! You did what you could but I see your fear almost as clear as our anxiety that you are coming. Cancer, understand this you can take all this from us and think you are winning but every time we laugh, smile, hold each other up, live our life and even cry through all this we WIN not you.

 

Sincerely and exhausted but living through every step

Ann Marie

Stupid dumb breast cancer
November 13th, 2012

Every journey is different but the mission is the same, survival! This is my journey http://stupiddumbbreastcancer.blogspot.com/ Please check it out and follow me as I change the face of breast cancer! Here is small piece of the blog...

 

 We must we must we must increase our bust....

I have been dying to use that and today seems perfect. I feel the fill doing it's magic, I guess it's magical. The expanders are meant to stretch and pull the muscles to make a nice spot for the implants. It is working trust me because my chest is friggin' killing me. It really puts a new twist on the old "we must increase our bust" boob exercises of my prepubescent youth. I think Tracy and I did these so much our arms would hurt! What a waste of time, all that work just to have them chopped off.

As my chest changes not just in growth but scars, shape, contour, sensation and squishiness (I can totally use that words so shut it!) I want to see every step. I mean see it and be able to remember the feeling. I want to remember with a photo what the hell happened. The hardest picture was the one Genevieve took 1 week after the lumpectomy. It was healing but still looked so destroyed. The second was my pictures with the girls when they signed my chest. Those boobs seem so strange to me now I can't believe those were my boobs! Stupid dumb breast cancer will never be forgotten but having an image is so theraputic to me. I think the people around me will find a new hatred for it. The hatred will stem from the crazy breast cancer fighter it has unleashed. They thought I was off the charts before! I am on a mission to spread the awareness of early detection. To take the unknown out of breast cancer. To make it a little less frightening to my fighting friends. Ok, yes the pictures may still be scary and raw but at least you get a sense of what the hell is happening!I want woman to stop being ashamed of what stupid dumb breast cancer does to their bodies and say fuck it this me and I am strong and beautiful. I know that I'm struggling to do that.....

before the first fill

 

Top