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Vulnerability at the Core: When Your Sister is Diagnosed With Breast Cancer [Revisited]

One year ago today, my sister Jessica was diagnosed with breast cancer. It left me and my family in total shock and devastation. Her diagnosis was frightening and full of ambiguity, but the most difficult aspect of it was the fears we had regarding how  Jessica would handle it. Jessica was born with Down Syndrome, which changes many aspects of life for her and us. Our primary fear was her lack of ability to cognitively understand her diagnosis, and her emotional ability to cope with everything that was to come.

Jessica’s diagnosed left me feeling especially “blank” and lost. In time, I did find myself able to write. Albeit, with difficulty. The following is a post I wrote after Jessica’s diagnosis. In the coming week, I will be writing another post as a reflection of this one, one year later. I wanted to share this post again because it was such a vulnerable and open time and I think it’s worth while to revisit it (even if I’m the only one that reads it!).

Today, Jessica is doing soo well! She is not done with treatment yet, but she’s in the home stretch. If you would like a closer look into Jessica’s life her journey throughout the last year, and our family please visit us at Jessica & Life: Cancer, Consciousness, and Eternal Youth - a Facebook page created by my brother Justin (photographer) and myself to document Jessica’s experience.

Vulnerability at the Core: When Your Sister is Diagnosed With Breast Cancer [Revisited]

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with an open heart . Down Syndrome

Tuesday, July 31st began like any other day. I studied in the morning, went to work in the afternoon, and came home. When I arrived home, I talked to my mom about my day, said hello to my sister Jessica, who has Down syndrome and who was coloring at the kitchen table, and then I went up to my room to grab a couple things before heading back down to the kitchen to have a snack. As I made my way down to the kitchen, my mom softly called to me from the top of the stairs, “Nina, can you come here a second?” I continued on, and yelled up to her, “What is it?” Again, my mom says, “Nina, can you please just come here a second? I need to talk to you about something”. What? I thought. My stomach sank. That sick feeling that lingers in your gut when you’ve done something wrong and you’re about to get caught ran through me. I immediately felt like I did as a kid, -especially as a teenager, when I was about to face a major lecture and punishment for whatever terrible deed I had committed. My mind began to scramble: What did I do?

Have I done anything bad recently? Did I do something ten years ago that she’s just finding out about now? I can’t think of anything that would warrant this private talk! I’m not a child anymore! What is going on?!

I came around the corner to the stairway. My mom was sitting on the landing halfway between the first and second flight of stairs. I cautiously took two steps up and stopped thinking again, what the hell is going on? My mom, with her hands clenched together, looked at me blankly, and then uttered, “Jessica’s test came back positive”. I had a moment of total blankness, and then a subtle moment of half-clarity where my mind was only beginning to comprehend what she was saying. It lasted for only a second, but it seemed as though a thousand thoughts crossed my mind and I was racing through each trying to find the answer that would make it all make sense. As I took another step closer to my mom I replied, “What?”

“It’s cancer. Jessica has cancer”

As my heart began to race, and tears filled my eyes, all I could say was, “I don’t understand. What do you mean?” over, and over again. How could this be happening? The doctors said there was a 95% chance it was nothing. Neither one of my parents said they were worried about her biopsy last week. Jessica is only 28. How is this happening!? My mom began to explain the diminutive information that she was given over the phone that morning, which was just that, -diminutive. “We caught it early,” she said, “It’s Stage 0 but the growth is Stage 3”. What the hell does that mean? That doesn’t make any sense, I thought. My mom goes on to explain that Jessica didn’t know yet, so we both made our way up the stairs and into my parent’s room where she couldn’t hear us. We sat there on the bed talking and crying. My mom explained that there’s a meeting with the doctors on Friday, and then we’ll begin to figure things out. As we sat there quietly, tears falling down our cheeks, my mom hugged me and said, “We’re both sitting here crying, and she’s downstairs coloring”. We both understood that this contrast of emotion and awareness is a symbol of Jessica’s innocence. How sad that she can’t understand all of this, but how beautiful that she is able to be so happy; so content, despite what she will soon face. The rest of that day was a blur. I know I cried. But I cried differently. I remember feeling incongruent and distant from myself. I felt lost in my heart and in my mind. I couldn’t comprehend how I was feeling and what I was thinking. I went out to the yard and just starred blankly outward questioning this new vague reality where “the C word” now resided, but where few explanations existed. And I stared inward searching for strength, for solace, for hope, for answers, for emotion. How could the doctors just call and tells us this kind of information over the phone and then tell us to wait almost a week to speak with someone? I was angry. I was sad. I was scared. I called two of my closest friends, but I didn’t know what to say. I didn’t know how to talk about “the C word” as we were calling it for Jess’s sake. Maybe I wasn’t ready to talk about it. Maybe I wasn’t able to wrap my head around the magnitude of what was at stake. I literally, was not able to talk about it. I simply couldn’t find the words. I remember sitting outside, trying to talk to my friends thinking, what is the matter with you Nina? This is serious, -verbalize! Once people started to find out, I shut down even more. I remember one conversation with one of my closest friends where I couldn’t say anything more than, “I don’t know”. That’s all that I kept repeating, “I don’t know what I’m thinking. I don’t know what I’m feeling. I don’t know, I don’t know, I don’t know”. I felt broken. I’m assuming on many levels this type of reaction is normal, but I still felt puzzled and frustrated by it. I wanted badly to write about everything in that moment, but I couldn’t. I couldn’t find any words to produce a complete thought. It was like my mind was blank. Just gray. Of course I had thoughts and feelings, but getting them out was like trying to find a needle in a haystack. I think my subconscious mind was numbing me from emotions I wasn’t ready to face yet. I was beyond stressed with life as it was already. Nonetheless, I felt that running from my feelings was everything I said I wouldn’t do this year; it’s why I started this blog! What progress had I made if I couldn’t be vulnerable, open and honest at a time like this? I felt like I was silencing myself against my will. Looking back, one of the reasons I think I felt this way was that, as a family, it was decided that we wouldn’t tell anyone until we knew more, which meant waiting till Friday’s meeting. To me, this felt like lying and I hated it. Although I understood why waiting was a good idea, and probably for the best, carrying that with me each day, and putting on my “I’m happy” mask was difficult. At work, I was happy. At home, I was borderline happy. But each day as I got into my car and drove away from the house, I welcomed each tear that fell down my cheeks. That was my time to grieve, -to feel. The afternoon we found out about Jessica’s cancer, but had not told her yet, I said to my parents, “Why don’t we just get a mastectomy and be done with it?” (I now realize how ignorant that comment was). My Dad made a comment that if it came down to that, we should do breast reconstruction so Jessica still feels good about herself physically. Not sure if she would really care or not, I said, “Hey Jess, would you be upset if someone took your boobs?” Jessica replied, “Uhhh, uh, yeah. These are mine. They’re fine”. I asked again, rephrasing, “So, if someone had to take them, and you didn’t have any boobs, you wouldn’t like that?” Then Jessica replied in her humorous way, “Hey! GET YOUR OWN BOOBS!” Of course we all laughed, and Jessica the loudest. Even in tough times, and in seemingly serious conversations, she’ll always make you laugh. I spent the evening trying to find solace in art, images, other peoples’ personal struggles with cancer, blogs, etc. I spent hours on the Internet trying to find that one quote, or blog post, or photograph that resonated with me in a way that helped me remain focused on the positive; to bring me some sort of peace. This image gave me a sense of solace in that moment, and I’ve return to it frequently.

with an open heart Friday’s appointment at the Jane Brattain Cancer Center in Minnesota finally arrived and the whole family attended the meeting. Jessica was diagnosed with Ductal Carcinoma In Situ (DCIS), which is a cancer that occurs within the milk duct of the breast. Jessica also had a 1 and half-inch calcification. That day, the surgeon recommended Jessica undergo a bilateral mastectomy and any other treatments would be determined after surgery. After receiving a second opinion, which was the same, we agreed that this was the best option. Surgery was scheduled for August 29th, and until then, it was a waiting game.

[My brother Justin, a photographer (among many awesome things) decided to document this whole experience through his photography. I’ve included his photos from the first meeting at the Jane Brattain Cancer Center. Justin and I are in the process of creating a blog for us to write about this experience as well as share the many amazing photos Justin has taken. I will share that blog as soon as it is up and running. Stay tuned!] In Justin’s words: These photos are from our first doctors visit since getting the biopsy results. There was a lot of information for us to take in during that meeting, and you can see there are many moments where Jessica is trying to understand what is being discussed. When Jessica doesn’t fully understand, she tries to gauge the emotions of the people around her. You could describe her expressions as “quizzical.” She can be incredibly empathic this way, soaking up your emotional signals and reflecting them back at you. Or sometimes if she senses you’re sad, she will respond with a hug, some sweetness, or say something silly to make you laugh. This empathy is one of Jessica’s most endearing traits.

(Talking with the nurse)

with an open heart

With an open heart. Down Syndrome. Breast cancer

(me entering the room…)

with an open heart. Down Syndrome. Breast Cancer

with an open heart. down syndrome. breast cancer

With an Open Heart. Down Syndrome. Vulnerability. Breast Cancer

with an open heart. vulnerability. photography. down syndrome. breast cancer

with an open heart. breast cancer. vulnerability. down syndrome

(Talking with the surgeon)

with an open heart. vulnerability. breast cancer. down syndrome

With an Open Heart. Vulnerability. Breast Cancer. Down Syndrome

with an open heart. breast cancer. down syndrome

with an Open heart. breast cancer. down syndrome

with an open heart

with an open heart

With an open heart

with an open heart. Justin Hickman Photography Photos by Justin Hickman Photography

As a family, we began to cope with things as pragmatically as we could. We did research, we asked others for advice, and about their experiences with cancer. We talked to Jessica about her cancer, and tried to help her comprehend everything that was going on around and within her. Back in March, I wrote about Jessica in the post, Happy Birthday to My Sister Jessica: The Epitome of Unconditional Love and Living With an Open Heart. I wrote about how much of a blessing she is, and how her simple view on life allows her to find happiness at almost every moment in her life. She’s so innocent. She’s so gentle. She’s so kind, and loving, and compassionate. Ironically, it’s these qualities that have caused additional pain with her diagnosis, yet also, ease. It’s painful to watch her struggle with the many appointments and changes to her routine, and the mere fact that she really struggles to understand what cancer is, and what it means for her going forward. At times, we feel as though we’re carrying her emotional pain with us, since she is not able understand much of it. Everything that she would likely be feeling emotionally if she didn’t have Down syndrome, we’re feeling for her. It’s like a child having cancer. It’s complicated and it’s not fair. One of my cousin’s said, “Cancer is not fair. Cancer is never fair. But cancer is really unfair when it’s Jessica”, and I agree. On the other side of things, Jessica is happy every day. She’s smiling every day. She’s silly, she jokes, she laughs, and comforts us, and she goes on with each day like any other. Her inability to really grasp what it means to have cancer, or go through such an altering surgery, allows her to live each day to the fullest and be incredibly happy despite cancer. That’s a blessing for sure. Although I wish Jessica never had cancer, I do believe that the world works in mysterious ways, and that everything happens for a reason. The day the doctor called to report that Jessica’s biopsy came back positive my grandma was discharged from the ICU for the second time in two months after breaking her neck. Sometimes you need a little good news to balance out the bad. That same day, by brother Justin also moved home while he looked for a new apartment and/or figured out if he wanted to move out of the country again. Oh, and did I mention, our feral kitten Magdon is now a fulltime resident, and he’s crazy! Although it is a lot having five of us live together again, it has also been comforting. Yes, it’s often tense, but at least we’re all still there together, as a family.

with an open heart

I know for me, having my brother at home has been essential to my wellbeing. My parents have been mentally and emotionally preoccupied much of the time, so having Justin around has been really helpful when I need someone to vent to and talk to. Magdon has also brought all of us a lot of joy and happiness. There’s just something about a cute animal that warms the heart.With an Open Heart

When I set out to begin this year living more vulnerably, being less afraid of my feelings, and consciously making an effort to become more open with my emotions, I was not prepared for the many significant family medical issues that surfaced this year. Jessica’s diagnosis has been the most difficult for me. It set me into an emotional unrest, and numbed me in a way that has truly tested my ability to live with an open heart. Although I wish I had written this post earlier, in the moment, I just wasn’t able to, and that’s okay now. Having compassion and patience with myself coincides with living with an open heart. It’s more important for me to open my heart, and simply let this story out. Nothing is ever perfect anyway.

If you’ve been in a similar situation and have any helpful advice or comments please post them. This is still so new to my family and me and we’re always open to recommendations, and/or hearing about how other people have coped.

Nina Shadi Signature Length

Jessica & Life Cancer Consciousness and Eternal Youth

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2 Comments Post a comment
  1. Hey Nina. I came across your post browsing on WordPress and decided to read it as I also have a brother with mental challenges. While he’s thankfully healthy for the most part, he does suffer from epilepsy. Every time I get a call from my mom with an episode, my heart clenches as I wish I could be there closer to them (I’m in NY, they’re in FL).

    I can’t offer much, but I want to let you know that you are not alone. Also, your writing and your brother’s photography conveys so much of your love, your parents love for Jessica – and that, in and of itself is amazing. It may not make the cancer go away, but love can do some incredible things.

    Sending you and your family and Jessica my thoughts and prayers.

    July 31, 2013
  2. I really have no advice on this, but I do know that you and your family will come through this stronger and wiser and more open. There is no right way to deal with what you’ve been dealt, but you are handling it with awareness and grace, and most importantly you are handling it together! The photos of your family brought tears to my eyes. It was so beautiful to see you all interacting and to see you ALL there for your sister during this scary and strange time. Hang in there. Big hug!

    Tobi

    July 31, 2013

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