Russian Roulette or Mastectomy: My Personal Journey

I’m in the war of my life, at the door of my life, got no choice but to fight til it’s done.
War of My Life, John Mayer

In honor of Breast Cancer Awareness month, I’ve decided to repost a series of blogs I wrote last year (2013) about my breast cancer journey. Writing about the process helped me cope with the feelings I had before, during and especially after my surgeries, and I received several emails from women going through the same or similar experience.

My hope in reposting these blogs is that more women whose lives have been impacted by breast cancer will know that they are not alone. And so, without further ado, here is the start of of my journey:

I love John Mayer. More correctly, I love John Mayer’s music. I mean, he’s not hard on the eyes but he is commitment phobic and, well, I’m a happily married woman. But his music is bluesy and soulful and it speaks to me.

Last Monday, as I drove the 55 miles from home to work, I heard the song War of My Life, and while I’ve probably heard the song a hundred times, this time, it spoke to me. And I realized that, since I received the results of my breast biopsy on April 30th (see I’m a Noble Warrior, I’ve Got This), I’ve been engaged in the war of my own life.

Here’s how it started. On Monday evening, April 29th, I picked up a voicemail from my doctor. “Great news on the biopsy, Suzanne. No cancer. I’ll call you tomorrow to check in.” I heaved a small sigh of relief (I didn’t really expect it to be otherwise) and went to bed.

The next morning as I’m driving to work, the phone rings. I answer it (using my built-in, hands-free setup), and it’s my doctor. “Hi Dr. McClure,” I said, “thanks for the great news on my biopsy.” “Yeah, about the biopsy,” she begins, “it’s true that you don’t have a cancer, but they did find something called Atypical Lobular Hyperplasia.”

“Atypical what?” Turns out that Atypical Lobular Hyperplasia (ALH) is a pre-cancerous condition (in the milk lobes) which may or may not become cancer. “So that means there is surgery in your future. An excisional biopsy (lumpectomy) at a minimum. Unless you decide to do something prophylactically.”

“Wait, what?” I said. “Prophylactically? As in, mastectomy?” By the time I pulled into the parking garage at work I felt like I was living in a parallel universe. And then, when I’d gathered my wits about me, I set out to learn more about my condition. And when I’d gathered all the facts, I made the decision to have a bilateral mastectomy. Here’s why:

1. A person with no risk factors for breast cancer has a 10% chance of getting breast cancer in their lifetime. People with ALH have a 4-5 time greater risk of getting breast cancer. So instead of 10%, my risk is now 40-50%.

2. Women between the ages of 45-55 (I’m 52) with ALH have the highest future risk of developing breast cancer, making my risk higher than 40-50%.

3. Women with a strong family history of breast cancer have an even higher future risk of developing breast cancer.

I have a strong family history of breast cancer.

In 2007, at the age of 51, my sister Diane was diagnosed with ALH. Before undergoing a lumpectomy to remove more tissue, she had a breast MRI which revealed nothing out of the ordinary. The lumpectomy revealed that she had cancer, and that they did not get clear margins (meaning there was cancer in the perimeter of the sample).

After undergoing another MRI, the radiologist saw something in the other breast that looked like it could maybe be something suspicious after all. A second lumpectomy was performed on the other breast which also revealed cancer with no clear margins.

It became clear that my sister’s best option was bilateral mastectomy with reconstruction (also known as radical mastectomy). The pathology of the tissue removed revealed hundreds of tiny tumors in both breasts that were not seen on imaging.

Me and my sister, Pamela (and her husband)
Me and my sister, Pamela (and her husband)

Three months later, at the age of 49, my sister Pamela found a lump. A mammogram revealed nothing unusual. An MRI revealed a tumor. Deciding on the more conservative lumpectomy, the pathology revealed two tumors, side by side: one tumor was cancer, the other was ALH.

Though both of my sisters tested negative for the breast cancer gene (BRCA 1 and BRCA2), a woman who has more than one immediately family member (mother, sister, daughter) who has had breast cancer but tested negative on the BRCA 1 and 2 test, has about a 40% chance of developing breast cancer in her life.

So, what does all that mean for me? In terms of risk, I’m not sure. It isn’t as simple as adding the risk of having ALH to the risk of having strong family history together. The truth lies somewhere in between and every medical professional I’ve spoken to, from surgeons to oncologists to genetic counselors, seems to have a different answer.

But the bottom line for me was this. Whatever the actual risk percentage is, it is too high for me.

Image Courtesy of Google Images
Image Courtesy of Google Images

 

And so, after carefully considering all options—weighing the pros and cons of each—I have decided that, rather than playing Russian Roulette with my life and opt for the most minimally invasive option (lumpectomy), I’ve decided to eliminate my lifetime risk (as well as a lifetime of fear) by having a bilateral mastectomy (I prefer even numbers and don’t wish to be known as the Uniboober).

Photo courtesy of Google Images
Photo courtesy of Google Images

But I didn’t come by this decision quickly or easily or without a lot of struggle (I’ve swung to both sides of the pendulum so many times it’s made me dizzy), and until last week, I wasn’t 100% certain I’d made the right decision. And then, last week, events unfolded that crystallized my decision. Here’s what happened:

Last Monday, while discussing my situation with a coworker/friend, she said, “You know, Suzanne, it seems to me that you’ve been given a warning sign. Maybe your mother is trying to tell you that she couldn’t stand to see another one of her babies suffer the way your other two sisters did.”

That night, I broke down and cried for the first time since this began (which is shocking for me, I’m a crier). Big gulping sobs that shook my whole body. As I crawled into bed that night I snuggled the teddy bear that my mom had crocheted for me when I was eight twenty-eight and when I held him, I felt her love. And then I talked to her. “Mom, I need for you to tell me what to do. And you need to pretty much hit me over the head with the answer.”

Tuesday I saw the breast surgeon who told me that ALH is tricky because, when it becomes invasive cancer, it isn’t normally seen on imaging (as in both my sisters cases).

Wednesday night my sister Pamela called. I hadn’t spoken to her since the day of my diagnosis and I didn’t know which way on the pendulum she would swing. When I finished telling her of my struggle to make a decision she said, “Well Suz, it’s a no brainer. Have the surgery. All of us Whitfield girl’s should have it. I wish I’d done it myself.”

And in her words I heard my mother’s voice, as clearly as if she’d been standing in front of me (hands on hips and wagging a finger at me). And so my decision was made.

On Thursday I woke up feeling lighter than I had in a long time.

On Friday I spent the morning communing with butterflies (I simply adore them) at the Conservatory of Flowers in San Francisco’s Golden Gate Park. That afternoon I met with the plastic surgeon who will be doing my reconstruction, and he was funny and kind (seriously, his name is actually Dr. Kind) and it further cemented my decision.

Photo courtesy of Google Images
Photo courtesy of Google Images

And finally, as I sat in rush hour traffic on the freeway heading home, I kid you not, a white butterfly flittered in front of my window, pausing for several seconds before taking off.

In that moment, I knew my mother was speaking to me. Good job, Suz. You made the right choice.

And so, sometime soon (I’m trying to plan around the John Mayer concert on July 23rd) I will be having a bilateral, nipple sparing mastectomy with reconstruction.

What about you? What “war” have you had to fight, and how did you go about making your decision? I want to know.

48 comments on… “Russian Roulette or Mastectomy: My Personal Journey”

  1. Suzanne, I’m so glad to hear you came to your decision and you’re at peace with it. Yes, your mom about had to hit you over the head with this one, and I’m sure she was happy to do it. Again, I have to tell you how much I admire your bravery. You’re amazing.


  2. Melissa Lewicki


    My mom had this done when she was about 45. She loved that for the rest of her life she didn’t have to wear a bra!! She was quite perky. I wish you the best.

  3. Wars? I have had several. My life changing war? When I feel I started to become a warrior?
    My gastric bypass.
    I was 125 lbs overweight. Humiliating. I’m a therapist. I preach health and exercise. I took care of high performance athletes! I could read disgust, in others faces when they looked at me. It was humiliating, shameful. But most of all Imwas getting sicker.

    I had so much advice, so many diagnoses, “eat chicken, salads, exercise more, input = output”. Noone would listen when I said something else was wrong. I was even told I had eating disorders, pschological disrorders. I tried it all. I failed at all. In fact I got heavier, sicker, more farigued. Tomeveryone else it appeared that I had no discipline no self control… Really? really??? I

    If you knew my life at all, and what I have gone through, you’d know I’m one tough cookie. I have a great deal of discipline. I’m a competitor. I took multiple tests with multiple odd results which were all explained as aberrations or ” well…its not right but it’s not going to hurt you”

    I was getting sicker, not living, not moving, hiding, filled with shame.

    I took a deep breath, took stock… And finally recieved, not actually got a new diagnosis, one I had received 20 + years before. Only now…now… It was reclassified as a different disease of a different system, that caused sifferent problems. I finally found a doctor who understood. She gave me a handout. One line read ” It is possible to lose weight, but once you gain it…it’s hard, it’s very very hard, your body will feel like your dieing as you try to diet” But I already knew that.

    I had to make a decision. I didn’t really know much about bypass surgery. In fact, I didn’t want to know much about it. I just knew it had to be done. I didn’t want to be afraid. I just found the best surgeon I could, and said let’s do it. I chose to live a real life. This is not life I’m living. Im at war.

    Nope, not one person agreed with my decision. Not one. My boyfriend said he would help me through, and support me, but did not think I was making a good decision. He did help, and he supported in ways I could never explain physically . But emotionally and mentally it was all me.

    I felt like it was me against the world. But the strength of my “instinct”? “Gut”? “Spirit”? said,

    “This is your chance.
    Your chance to change.
    Your chance to live.
    Your life will never be the same. ”

    I just put the steps in motion and did what I needed to do.
    It was hard. It’s still hard. It frustrates me when I hear people say I “took the easy way”. Not one day is easy. I lost and kept off 125 lbs. for 11 years . I have side effects daily.
    But I am moving. I am living. I can do things i couldnt. I appreciate every day. Ive had ups and downs. I’ve fought other wars with myself. But I am better equipped.
    The best outcome? I learned to listen and trust in my “gut”, “instinct” “soul”. i learned that I feel much more peace, when I quiet and listen to myself. If I am honest with myself, I will always give myself the answer that I need.

    That’s my advice to a warrior. Quiet yourself. Listen to yourself. Do what you need to do. Have courage to look at your fear. Face your fear. Look at your fear, talk to it, but choose not to react to it. Trust yourself. Do what you need to do to live your life.

  4. Suzanne–thank you for sharing your ongoing your story so poignantly. I have not had such a struggle in my life–yet–but I store up examples like yours for when my time inevitably comes.

  5. I am so proud of you, Suzanne. I know exactly how you feel about signs from a loved one. I know writing this post was difficult for you. I just did something similar when I was asked to tell my story of defeat and survival. My daughter died of melanoma eleven years ago next month. Three years after her death I had cancer surgery for uterine cancer. I was lucky because when the uterus came out, all the cancer came with it. Typing the story was very difficult, but something good came of it. It was just last week on Tuesday that it went live. I thought by writing from my heart like you did, I would find some kind of healing. Much to my surprise, it was all of the comments that helped me the most. I was not alone in this because I have some many people who care – just as you do. The comments pushed me over the top I think because they made me stronger. I have no doubt you are doing the right thing and I definitely feel that butterfly was a sign from your mother. My daughter is constantly sending me signs and I am also thankful I recognize when they arrive. Mother’s Day was so painful for me this year and I think my angel had enough and I got bombarded with signs. Facing our biggest fears and doing something about them is the best way to walk in the sunshine again. I shed tears again this morning reading your post, but they were tears for your bravery. Keeping you in my prayers.

    • Paisley – you are such a warrior and an inspiration to me. Please send me the link to your post — I’m sorry I missed it.

      As an addendum to the butterfly on Friday, last Saturday night I went to see The Long Island Medium (Theresa Caputo) who was performing in Stockton. I knew I wouldn’t get a reading because I’m at peace with my losses but I asked my mom to make sure Theresa mentioned butterflies. At the very end she said, “Some of you can see or feel your departed loved ones, some see them in butterflies …”

      Your daughter is with you every moment, just as my mother is with me.

  6. Suzanne,
    Thank you soooo much for sharing your story! You are one of the most courageous people I have ever met. I know you made the right choice and that your mother helped you along the way.

    My own “war” wasn’t quite so dramatic, but it felt pretty darn awful while I was going through it. In 2003 I was falling apart emotionally and physically. I was in a job I hated with people who (at best) threw up roadblocks to thwart my every more, and (at worst) sabotaged everything I tried to do. I had a chronic health condition that was getting worse due to all the stress, and I was clinically depressed and on medication. Finally, after much fighting with my personnel department at work, I took a 3 month leave of absence. During that time, I decided that I would take an early retirement and do what I’d always dreamed of doing — write novels.

    I wasn’t sure if I’d have enough money to live after I left my job, but I figured even working part-time at the local discount store would be better than the hell I was enduring. So in Sept. 2003, I left my 17 year career to stay home and write. It took me four months to get off the anti-depressants and feel physically good enough to even start writing. But once I did, I kept going, and I’ve managed to live without any other job for almost ten years.

    I have never regretted my decision for one second! Mostly I am just very happy that somehow I found the strength to walk away and start living my life on my own terms.

    • What a great story, Cindy. I think our personal challenges (and we all have them) are really opportunities to learn and grow and you did both. Kudos to you for taking the steps to heal yourself and your life. And thanks for the support. It really helps.

  7. Wow! What am amazing post! You are extremely courageous — and I love all the steps you went through to arrive at your brave decision — logical and spiritual! And I also love your sense of humor about it all (the Uniboober!) Congrats on such a major decision and all best wishes for a speedy recovery and HEALTHY perky new boobies! :o)

    • Thanks, Darcy! Of all people (I mean, since everything you write is funny), you understand how important it is to maintain that sense of humor.

      • thanks, Suzanne — And I love your comment on my recent post — believe me, I want to BE the Butterfly too! dagnabit – I’d even be a wooly caterpillar if I had THAT chick’s bod! :o) Ha!

  8. Suzanne, thank you for sharing this on your blog. I follow Susie Lindau and after reading after her experience undergoing a bilateral mastectomy, I think I could handle that if I’m ever faced with such a decision. I also saw your comment on her latest post, so I wanted to be sure and visit your blog and let you know I’m going to support you and cheer for you and pray for you through this whole ordeal.

    I’m overdue for a mammo and called today and they had a cancellation for tomorrow, so yay! My mom had breast cancer about 8 or 9 years ago but she only had the lumpectomy. No return of the cancer, thank God.

    I think you’re making the right decision, and I’m so glad you received the confirmation that you were looking for, plus the white butterfly, which my middle daughter told me is a sign of God’s presence! So that’s pretty neat that you saw it at the time you did. The history of your sisters is another excellent reason you should go with the bilateral mastectomy. Let us know when your surgery is scheduled. I hope you get to go to the John Mayer concert, too!

    • Hi Lynn — Your support means more than I can say. I actually gasped when I read the part about the white butterfly being a sign of God’s presence. I am so at peace with my decision. I think I actually made it the day my doctor called, but couldn’t muster the courage to say it out loud until last week. Will let you know when the big day is. *hugs*

  9. Suzanne, I am standing up and applauding you for your bravery and sharing your story with us all. Like Lynn, I to know Susie Lindau, a fellow Wana. She just had the surgery ten days ago (http://susielindau.com/2013/06/08/the-boob-report-iv-coming-out-of-the-haze/ ). Yes, she has the same situation you do. And…there is Christine MacKenzie, another Wana who went through this last year. And is still going through the reconstructive process. Um, after knowing all of you strong, capable women, I have no problems Suzanne. Not anything that would measure up to the life altering decisions you women have had to make. I am so proud of you. And I am here to support you every step of the way. That butterfly is a wonderful imagery. It gives us hope, doesn’t it? So Rock On with John Mayer my new Wana friend! You deserve it! I’m sending you huge hugs! {{Hugs!}} xxx Karen. 🙂

    • Hi Karen – yes, Susie is so brave (especially for posing in her underwear for the whole world to see) and I’ve been following her progress, sobering as it is. One of the great things about being a WANA is the wonderful support from friends like you. *hugs back*

  10. Oh Suzanne. I didn’t know you were facing this battle. I am so sorry. I have been following Suzie’s story and hearing you are in the same situation really hit home. I haven’t even had a well check in years and it just has to get done. Please know I’ll be cheering you on and praying you stay armed with your invincible spirit! (((Hugs)))

    • Thanks, Ginger. The support means more than you could imagine. I would love to connect with Susie and have been following her Boob Report. She’s my new hero.

  11. Suzanne, my mama talks to me when I need it too, and it’s always very clear in my head when she’s got something to say. It’s amazing how they get through despite passing on.

    I’m very impressed that you’ve made such a tough decision and I think you’ll feel so much better having the “maybe” off the table. I also love that you’re spreading the word. All your WANA brothers and sisters will rally, I promise you.

    You FIGHT ON, girlfriend.

  12. Hello, Suzanne.

    Karen McFarland sent me here – and I always do as she tells me!

    You’ve made the right decision for you and for your family. With the family history I feel you didn’t have a choice. I mean, if you were about to get on a plane and were told that the plane had a 40% chance of crashing you wouldn’t get on it! I went through the same thing eighteen months ago. My cancer was high grade in the milk ducts. I’ve three children and didn’t think twice about a mastectomy. Very soon I’m due to have a DIEP reconstruction, taking muscle and fat from the stomach to make a new breast. I’ve already had a breast expander and implant, but my body has rejected the implant so plan B is being organised.

    Susie has been amazing! The belt for the shower and mobility is an awesome idea.

    Something to remember is that cancer is such a powerful word that it detonates an emotional grenade right into the middle of our family life, and we need to take that power back. By writing about your experience you’re doing just that. Reclaiming your life, and for me that meant losing the fear of failure as a writer, is key for you going forward.

    Good things come out of disaster.

    You dodged a bullet.

    Big Hugs,
    Christine

    • Hi Christine – thanks for reaching out. My plastic surgeon is one of the pioneers of the DIEP flap surgery. Unfortunately (well, I guess depending on how you look at it), I don’t have enough belly fat (or thigh fat for the TUG flap) to fill the space, so I’m going to try implants. He thinks I’m a good candidate for one-state reconstruction, which will be nice. Hopefully it will work. Please keep in touch, I’ll be anxious to hear how this goes for you. Hugs right back atcha.

  13. I had no idea you were going through this, and I’m so grateful to Karen McFarland for sharing your post. I’m sorry that you have to face such a tough decision, and you’ll be in my prayers. So many women I know have gone through this, and their bravery, and yours, is inspiring!

  14. Suzanne, you are a warrior! Congrats on your decision, and I love how your mom spoke to you.
    It’s funny – the day Susie Lindau had her mastectomy is the day I had my mammogram. Yesterday I got my results – all clear! – and today your post shows up. I am lucky in that I don’t have a history of breast cancer on either side of my family, but that doesn’t mean I take anything for granted.

    As for me, my warrior moment came when I was diagnosed with an acoustic neuroma on my right acoustic nerve. The tumor was non-cancerous (which they are 99.9% of the time in that location), but it was hanging on my facial nerve. A girlfriend who is a neurosurgical nurse urged me to go with radiation only – but my inner gut kept telling me to get it handled surgically. I worried about the stupidest things – was I going for surgery so I could be “the girl who had brain surgery”? – and stuff like that. But in the long run, after talking to total Rock Star surgeons, I went ahead with it. Eleven hours later, they had removed ALL of the tumor – and left my facial nerve untouched (it could have gone horribly, horribly wrong). Losing the hearing in my right ear was a small price to pay. The tumor is gone, it won’t recur, and it won’t grow again after being killed by radiation.

    So, yeah. Here’s to ALL us Warrior Women. Some wars may be bigger than others, but that doesn’t lessen the effect they have on us.

    Sending you HUGE hugs and all the best wishes!

    • Hi Christine — wow, what a story. The surgery must have been terrifying! I’m so glad it all worked out for you, my fellow WANA Warrior (sounds like a new tribe!). *hugs*

  15. I’m proud of you, Suzanne – so brave and so strong and so smart in the face of a major life upheaval. But in the end you still have it – your life. That’s the important part. The soul and the heart of you, the intellect that makes you unique, will all still be there. The rest is just window dressing – and we know how fast fads can go out of style! You’re setting the mark for great thinking – and I’m sure your mom would love that!!! Hugs – Yvonne

  16. Well my friend, you already know how I feel about this whole situation. I’ve been praying for you for a while now and I know that simply making a decision is a breath of fresh air. The not knowing and guessing and wondering will kill you faster than cancer. You’re doing the right thing. Be brave, noble warrior and stay strong. There are a whole lot of people hugging you out there in cyberspace.

    Patricia Rickrode
    w/a Jansen Schmidt

  17. I’ve never waged a war like the one your facing. Frankly, I’m not sure how well I’d hold up. Despite the fear, confusion and God only knows what else you must be feeling, you’re amazingly brave. You’re in my thoughts and prayers.

  18. Many prayers for you, Suzanne, for a safe surgery and a smooth recovery. My friend, blogger Susie Lindau, just came to the same decision and went for the double mastectomy. For what it’s worth, I am a cancer survivor. Mine was thyroid so I didn’t have a choice in the matter, but that was almost three decades ago, and I’ve had a good life. All the best to you.

  19. Suzanne – Thank you for sharing your courage and your struggle to come to clarity and peace. I think it is amazingly empowering to share our journeys as women and as people, and I appreciate how open you are about doing this. You shine a light for the rest of us. Right now my oldest daughter, Jennifer, who is 22, is facing a second surgery for thyroid cancer (next week). Her thyroid and neck lymph nodes on the right were removed a year ago. When cancer indicators showed up in a lymph node on the left, she made the decision to have all of those lymph nodes surgically removed, rather than facing an uncertain future of treating lymph nodes one by one via surgery or injection. These decision are tough, but I definitely think you are making the right one. Please accept my virtual hugs, and some shared tears.
    Warmly,
    Debbie

    • Hi Debbie — I’m so sorry your daughter has to go thru this again. What a brave and smart decision to make at such a young age. You must be proud. Sending you hugs back.

  20. Karen McFarland sent a bunch of us over here and I’m so glad she did. This has got to be one of the toughest decisions to make ever but I think it is the right one for you. Both of my parents died from cancer (father, lung; mother, pancreatic). At least with breast cancer there is a way to come close to guaranteeing that it won’t come back. I will be keeping you in my prayers!!

  21. What a great post Suzanne, I am so pleased you heard from your mother – I understand how the butterfly connection would have taken your breath away. It sounds like you have made a sensible choice on the information you have, sensible and brave. I will be thinking of you and sending my very best wishes on butterfly wings across the ocean.

  22. I bow to your wisdom, your courage, your humor, and your honor. You’ve got everything you need. And a whole lot of loving support as well. Remember the support and reach out to us when you need encouragement. We’ll be here waiting with baited breath, ready with hugs and cheers. {{hugs}}

  23. I came across your post via Karen McFarland and just wanted to lend my support and hugs. There isn’t much I can say as I’ve never personally been through what you are, but I commend you for sharing the experience. Awareness helps everyone, and we need more positive voices like yours.

  24. Suzanne –

    I am sorry you have to go through all of this, how horrid! What a great post. A quote which helped me through hard times, “Life is hard, be a rock, be steel.” Robert Frost And it sounds as though, you are doing just that!”

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  27. I was feeling alone knowing that I had ALH and this is the first time that I have read something that encouraged me. I keep thinking that PM would be the right decision for me. So far I have had a partial mastectomy, lumpectomy and now increased ALH since my last biopsy. Thank you for sharing

    • Hi Sandra,
      I’m so sorry for all you’ve been through (and are still going through). Preventive Mastectomy is a big decision for sure, but I can tell you that I have no regrets. The biggest factor for me was eliminating the fear. Send me an email through my contacts page if you’d like to talk privately. I wish you the best.
      Suzanne

  28. I’m so proud of you for going through this and in the process saving us, you love you, from having to fear for you if your cancer did progress! I absolutely love the images of Mom as represented by a butterfly. She is and will always be our model of strength and courage. I’m happy to have 6 years of cancer free life under my belt and look forward to many more. It was a battle as you know. That picture was the first time I showed my bald head in public. It was hard in many ways. You certainly can’t feel attractive. But, can I tell you what a time saver it is?! That was when I learned to stop being a slave to my hair. Ive never spent the time fussing with my hair ever since! And now enjoy long healthy hair. It’s lovely to have the privilege of worrying about simple things like hair. Thank god for modern medicine. I’m very lucky to live in this day and age.

    • You’re so right, Pamela. We are so very lucky to live in this day of modern medicine. Between both our parents we did indeed receive the Courage gene. I can hardly believe it’s been 6 years for you. I pray every night for God to keep you healthy, sister! Love you!

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