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

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.

**Since Jessica’s surgery, we’ve learned that she no longer has what is considered DCIS as her cancer has spread out of the duct, but thankfully not to the lymph nodes yet. It is now what the medical field calls “invasive”. Jessica will begin chemotherapy this coming Thursday.

Nina Shadi Signature Length

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13 Comments Post a comment
  1. Nina, I’m so sorry! My heart goes out to you and your family.

    My younger sister, Genevieve, was diagnosed with bile duct cancer in October 2001, at the age of 41, and passed away in September 2003.

    I understand the shock it is to you and your family. I applaud your commitment to stay present to your emotions. The best thing you can do is to be present for your sister and your family emotionally.

    I tend to be an optimist, sometimes to the point of denial (or at least some have said). It became apparent during my sister’s illness that my optimism was robbing her of the opportunity to share her fears.

    I think we believe that we have to “be brave” for the other person, when really the best thing we can do is show up authentically, wherever we may be. That doesn’t mean that we should rely on the sick person to shore us up, but there’s nothing wrong with letting them know that we are scared for them (if that is how you are feeling).

    And, yes, have compassion for yourself. Be kind to yourself. Relax your expectations of yourself. Do whatever you need to take care of yourself.

    Sending tons of love to you, Jessica, and your family.

    Laura

    October 5, 2012
    • Nina Shadi #

      Thank you for your words of support Laura. It’s very much appreciated. I’m just trying to take everything one day at a time, and to be present in each moment.

      October 9, 2012
  2. Nina – this is very sad and I’m sorry. I work in a hospital and deal with people with brain cancers – all I can say is never give up hope, think positively (which I know can be hard), have fun and laugh as much as you can. Grief is natural and a coping mechanism so dont beat yourself up when it happens. Thinking of you all

    October 5, 2012
  3. Nina,

    Sending strong, good thoughts to you, your sister, and family.

    I also want to join Laura’s very thoughtful reply here. Being present, taking care of yourself, forgiveness, acceptance.

    Finally, your abundant love for your sister shines through. That’s a great blessing to her- and to you.

    Tom

    October 6, 2012
    • Nina Shadi #

      Thank you Tom: )

      October 9, 2012
  4. My thoughts and prayers are with you and your family.

    October 7, 2012
  5. tfaswift #

    It feels kind of wrong to click “like” for a post about someone having cancer, but I did it because those little gravatars, or whatever they’re called, show that there’s another person out here, thinking about your sister, about you, and your whole family, and praying for you all as well.

    October 9, 2012
    • That is a beautiful way to put it! Thank you for all of the love and support: )

      October 16, 2012
  6. Thank you for sharing this. My heart goes out to you. Breast cancer has always been an intimate part of and possibilty in my life. My mother wrote the last post on my blog about her story (http://unladylikemusings.wordpress.com/2012/10/05/guest-post-cancer-and-strong-women-my-heritage/). For me it helps to read other people’s stories. It lets me know that I am not alone and helps me to be able to process with people who can understand.

    In the midst of my mothers last crisis I found a website called FORCE, Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/). I found it helpful and encouraging.

    It is obvious that you love your sister. Keep letting her see that. Everyday.

    October 10, 2012
  7. Diane Saed #

    Nina and family, We are thinking of you and praying that Jessica does well. It is very obvious that her sense of humor is in tact and that she has much love and support from family and friends. Your blog, Nina, is wonderful and I imagine that in and of itself it is helpful to others who may be going through a similar struggle. We have not seen you in awhile, but our love and thoughts go out to you and your family, and you will remain in our prayers. Blessings to all of you.

    October 16, 2012
  8. Dear Nina and Famiy:
    I did not cry like this for my own breast cancer. I was so very touched by your raw emotions and sincerity. When I saw you, “liked” my post, I wondered why a young beautiful girl would be checking it out. There’s so many emotions that come up with this experience and I’ve learned to allow them to teach me something. Your family looks strong and Jessica is beautiful. I had the opportunity of teaching adults with Downs when I was first starting out and it was a great experience. Treatment has come such a long ways and I pray that she has a gentle experience. While she is going through this, the journey is also for you and your family. Making sense of it is very hard. Feeling the gifts of it is easier.

    Perhaps you will learn things about your own inner power and soul. Perhaps a strength you didn’t know you had will come forth. Tears will come but let them and know you all are in a place of love and living love on earth is all we can do, no matter what life throws at us.

    Sending you my Love,
    Aum (om) Nicol
    Grande Prairie, Alberta
    Canada

    October 22, 2012
    • Thank you so much Aum for your kind words and for sharing your personal experience. This whole experience has tested our strength as a family as well as personal strength. There are many ups and downs; good days and bad as your know. But Jessica is surely the strongest every day. She’s nothing short of amazing. As of today, she’s two and a half weeks into chemo and so far she’s doing quite well. We know that she will get weaker each week, but if her spirits stay as high as they have been, I know she’ll be fine. As for me, I’ll continue to take it one day at a time and try and let myself cry when I need to (it’s something I really struggle with but know how important it is). If you’re interested, you can follow much of Jessica’s story at the follow site: http://www.Facebook.com/jessicaandlife (full website coming soon).

      Thanks again,

      NS

      October 23, 2012
  9. Your story hits rather close, you are a strong woman. I wish you the best, truly.

    November 22, 2012

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