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Jul 31, 2014

Radical rant: Barriers to healthcare access are real for some women

My Fabulous Boobies:  Barriers to health care access are real for some women
Today's post is a rant with a purpose. Its long, so I'm going to dive right in.

*****

Women of color face certain barriers to access health care that are not always acknowledged as significant problems. These minor assumptions can result in a woman who needs health care making the choice not to pursue it. That choice puts her life in jeopardy and also jeopardizes the safety of her family. When we take into consideration that very often these women are the primary caregivers for their children (and sometimes their parents and/or siblings as well) and that they may be the primary source of financial support for their families... perhaps you can understand why anything (no matter how trivial it may seem) that occurs that forces her to reconsider that appointment or to ignore that issue with her breasts can be a major problem.

My terrible experience (luckily it was just one situation).


I think I've mentioned the story about a problem I had with one medical assistant during my treatment. I was about 2 months into my 4 month chemotherapy treatment. I was bald. I was weak. I was tired. I was fragile. I was home on disability because I didn't have the strength to work. But, I also had a ton of doctor's appointments at the hospital and I had to make them happen. Doctors don't make house visits anymore, after all.

So, this particular day... I went to an appointment to see my plastic surgeon so that we could discuss the plans for my breast reconstruction. Again, I was EXHAUSTED and in hindsight... I know I looked bad. Hell, I felt bad. But I had a smile plastered on my face and my boyfriend was there that day to help me get through my appointment. It was supposed to be a quick appointment with a very busy doctor who I had been trying to see for months.

My Fabulous Boobies:  Barriers to health care access are real for some womenI got off the elevator, I walked up to the front desk. I gave my prettiest smile and put a happy lilt in my voice and checked in. I signed my name and went to sit in the waiting area. The young lady took my information and then proceeded to take a personal phone call on her cellphone. I watched her talk to her friend about a party in a certain part of town, what she wore, what some other chick said to her about her man... and on and on and on the clucking went. Personally, I didn't care about her phone call. I just wanted to be done with this appointment and back on my way to bed as soon as possible. Time passed. Patients were called back, somewhat slowly it seemed but, meh. Sometimes it takes a while, right? Patience... Finally, I think she went to lunch and I looked at my boyfriend's watch and realized that we had been sitting there for well over an hour.

I'm no genius but something tells me that a hospital doesn't normally keep chemotherapy patients waiting in an open waiting room that long. I walked back to the front desk and asked the other person working if there had been a problem that I wasn't aware of. Imagine my anger when he realized that I had not even been checked into the computer. They thought that I had not showed up.

*blink, blink*  Deep sigh.

I pointed to the sign in sheet and the time by my name -- which was 15 minutes prior to my appointment time -- and said that I was very weak and very tired. I had just spent about 4 days in the hospital the week before because I had a bad case of neutropenia (my immune system was very weak and compromised). I just wasn't in the space for shenanigans from people who didn't want to do their job. He took care of me immediately, a nurse came from the back to retrieve me... and I saw the plastic surgeon pretty soon after that. However, I made sure to register my anger and frustration with the young man who worked with me because I felt that his co-worker did not take her job seriously enough. She was a receptionist for an oncology surgeon. Even if she didn't have a sensitivity to that... I LOOKED like a damn cancer patient. She worked in a hospital. Do the math. Better yet... do your damn job.

I snitched to my oncologist, because he was the head of the oncology department.  I snitched to the head nurse in the cancer center. In fact, anyone who listened, heard my concerns (in a pleasant tone) about the chick who left me waiting for over an hour because she wanted to talk about a party by the Shrimp Boat. One thing I learned during the course of my treatment was that it is the patient's life in jeopardy but for some medical workers it is merely their job. And those are two different perspectives and they can often lead to different appreciations of what is going on.

...and the second scenario - my friend's situation


I was reminded of this terrible episode today when I talked to a friend who was having a few issues with her breast. She wanted to talk to someone who understood what she was dealing with and I tried to provide an insight to my journey while alleviating her anxiety as much as I could. But then she mentioned that in discussing her appointment with someone at the breast center, she was asked whether or not she had someone to watch her children. The appointment taker said to her, more than once, that she needed to find a babysitter because she wasn't sure that kids sitting in a waiting room was acceptable.

*blink blink*

My Fabulous Boobies:  Barriers to health care access are real for some womenMy friend is a single parent. I know that children can present a challenge in some situations because of their innate desire to be active and rambunctious... the larger view of this situation was, my friend had an issue with her breast. That issue was of enough concern that she was now making an appointment with a breast care center at the suggestion of another doctor who felt she needed more tests. That means that perhaps whatever is going on was a bit deeper than a pimple or something. So... let's remain focused on the goal -- checking out her health --- not disparaging her efforts as a single mother to care for herself and her children alone.

To the person on the other side of the phone, this was one appointment out of many made just that day. I have worked as a front-line person in an office; I know that the position can be stressful and repetitive. It is  easy to look at each action as just another task on your list of things to do. However, in a health care environment, I think we have to remember that the people on the other side of the desk or the phone are human beings in a scary situation. No one likes the anxiety of wondering what is wrong with their body. When it comes to our breasts, it is more than just something hurting us physically, this is an emotional situation too. Our breasts sort of define our femininity - or at the minimum they make us feel like a girl. The fear of dealing with cancer and mastectomies and reconstruction (in my case) or the fear and confusion about whether or not it is cancer or simply a cyst (in my friend's case) cannot be overstated.

Dammit we're scared. Is it too much to ask that we're treated with some respect for what we're feeling? And that we're not treated like an old Buick going in for an oil change? Nothing about these appointments feels great for us. We're trying to maintain our composure in the face of something frightening. Just do your job... save the foolishness for your personal time.

These stories may seem somewhat trivial. Perhaps we both could have been more understanding of whatever challenges the person in the office may have been dealing with, after all they are human too. However, the larger picture here for me is... dealing with medical personnel who seem not to care, or who seem to be less than concerned about our lives can often be just enough to make someone hang up the phone, or leave the hospital and not receive the treatment that they need.

In the case of my friend, many black women are single parents. This is a reality of their lives. They work hard to maintain their composure for themselves and for their children but they also don't often have the same safety nets that other people have. My friend didn't have a babysitter. That was just the reality of her day. She needed this appointment, and she didn't have a sitter. Which choice was she supposed to make? Imagine the numbers of women who look at their choices and opt to care for their children, or not deal with the bad attitudes of workers having a bad day.

It is a little thing and still a big thing.


Even when women are not single parents, they are often the primary caregiver. Same problems apply. Where they go, the kids go too. Who has an office geared towards women's health and doesn't take into consideration that with women often come children? If this is happening at your doctor's office, may I suggest speaking to your doctor and the office manager and explaining to them that childcare issues are a real thing. Some type of accommodation -- either in attitude or actual space -- is necessary for many of their patients. We aren't just numbers and insurance accounts. We are living, breathing people with lives and we're coming to you because we want to keep our lives so that we can keep being there for our families.

If you are a healthcare worker:  Don't allow the lack of childcare or disinterested workers keep your patients from getting the treatment that they want and need.

If you are a patient:  Don't allow mistreatment go unchallenged. You can be kind in your delivery but bring your concerns to the attention of the office manager, the head nurse or the physician you are seeing. Someone may just need more training. But your complaint can help to ensure that another patient doesn't face this same issue.

Talk to me... tell me your stories and your thoughts about barriers to access. There are more... I know. Language, transportation, cost, insurance, etc. Leave me a comment below.






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Jul 30, 2014

How blogging and writing is saving me

My Fabulous Boobies:  How blogging and writing is saving me

“Your gift will feed you.”


― Nic Nac Paddywack 

I have a personal saying that I recently adopted -- Your gift will feed you. I cannot tell you exactly when I decided this but it was pretty recent. I guess within the past 2-3 months. Accepting this mantra has been really a good thing for my spirit. I say it to myself as an affirmation many times per day.

I've been blogging now for nearly six years. My Fabulous Boobies has been cathartic for me, educational and insightful for others and it has given me concrete evidence that writing is truly my gift and my calling.

I've been an avid reader and storyteller since I was a little girl. I mean, very very small. My mother tells the story that she "discovered" that her only child was able to read when I was about 3 years old. Notice I said that she discovered it... because she found me reading and realized that I would read anything that was left laying around. As an only kid, I played by myself all the time... making up fantastic stories and situations with my dolls and such. I would write little books and create the covers out of construction paper with my own original crayon art. This was how I entertained myself. I've kept a diary or a journal since I was maybe about 8 years old. I've chronicled my life and my thoughts since forever.

Writing is what I do. I just never really believed that it would or could feed me.


I have always held writers in a pretty high regard. I thought their work was magical. I never thought of my writing as either work, nor valuable and certainly not magical. It was just me... killing time, spilling words on paper. No big deal.

No big deal.


I believed that working 9 - 5 for someone else was what I should do. I believed that responsible adults worked regular office hours (if they were fortunate) and they made good money and supported themselves. So I wrote in my journals in secret and I didn't think much of it. I wrote for free for many people (sometimes I still do) and I was just grateful when someone read it who wasn't related to me.

I never thought that writing would feed me.


I had a "real" job, in a real office, dealing with real politics. Writing humorous essays about being a frivolous young adult was well... just kicks. I was surprised that people paid attention but never thought that writing would feed me. I've got more examples of me coming close to greatness (laughs) and not believing it was real... and the problem in every situation wasn't that my writing was terribly bad or that people were just being kind. It was because I truly did not believe that I had whatever magic that "real" writers had. My writing wasn't long flowing lyrical elegance like Toni Morrison. It was conversational and (to me) sort of low brow. It wasn't filled with hard to pronounce unfamiliar words or terms. It was neighborly. I didn't think people who were "real readers" would appreciate it.

I fell in love when I read Maya Angelou's autobiography "I Know Why the Caged Bird Sings. My life transformed a bit after that because her writing was like mine. It was warm and conversational. It was neighborly and familiar. It was comforting. And she was a real writer. I wanted to be like her. And like Zora Neale Hurston. They had wonderful, authentic voices... regular people writing about regular life with a familiarity that made you smile and feel as though you were chatting with a neighbor. My biggest challenge was that I didn't know how to get from here (regular person)... to there (magical writer). It seemed like a large chasm separated me from being a "real writer". So I wrote on the side and figured that writing would never feed me financially but perhaps it could feed my spirit and that would be sufficient.

I went to writing workshops that buoyed my spirit, read fascinating books and magazines about writing, took writing classes and basically studied my craft without fully realizing what I was doing. In my mind, I was still chasing a far away dream. It was a hobby. And then one day, I was diagnosed with breast cancer.

Everything changed.


The only thing I had that could anchor me in the belief that I would, somehow, be okay... was to write. I wrote like my life depended on it. I wrote many days curled up in my bed, with the curtains drawn and the only light coming from the screen in front of me. I wrote through tears and sobs that shook my entire body. I wrote through pain, nausea, neuropathy that left my fingertips a tender mess... and when that wasn't enough, I typed for weeks with my fingertips wrapped in bandages because my fingernails had fallen off thanks to chemotherapy.

I wrote regularly, not every day -- I wasn't always physically or emotionally able to do it daily -- but I wrote. I wrote as my body was torn down and ripped apart... first by the effects of chemotherapy and then from the horror of losing my breast from a mastectomy I wasn't ready for until it was over. I wrote through the months of pain from the large radiation burn on my flat-on-one-side chest where my breast once was. I wrote when I tried to go back to work and was sent home because I didn't "look" well enough to be there. I wrote through the agony of losing my relationship with my boyfriend, of not recognizing my own body in the mirror... I just wrote.  And I've been writing and sharing since.

Along the way I discovered that blogging was saving me. I hated my job. I can finally admit that. It wasn't their fault... I just didn't like it. I was still settling for that 9 - 5 life that I had always been told was the path that mature adults took. But I am a writer. When my job was gone and I was looking at life through a pink ribbon lens... nothing I did before made much sense anymore. My life seemed so frivolous and empty. I needed it to have some meaning now. Breast cancer changed everything for me.

I kept writing. I discovered social media and twitter friends and facebook friends and pinterest buddies... and they saved me from the wretched loneliness of being so heartbroken that no one could understand my pain. I found a new tribe online. There were tons of survivors and other people who didn't mind talking about or listening to someone yammer on about breast cancer. Writing was saving me.

A new career was born.


It took me a few years to realize that writing the way that I was doing on my blog wasn't going to make me rich and there was a lot more to blogging than just writing my thoughts. So, I decided to learn more. I went to blogging conferences, read books, watched videos, listened to podcasts and realized that if I wanted blogging to feed me in a real way, I had to approach things differently. Slowly I changed and started adopting new practices and I started seeing some changes. Writing was now feeding my pockets. But just a little.

I will be candid and say that I've gained more experience than money, made more memories than coins... but the tide is turning. Blogging and writing has rewarded me more in these past few years than I received in the 15 or so years I spent working in government affairs. Prior to my diagnosis I was in a crisis state. My friends in the field were doing well, but they all loved what they did. They wanted to work all the time. They went to fancy schools and got fancier degrees... and I could never pull that trigger. I never felt the way they felt about the jobs. It didn't occur to me that I wasn't doing what I was supposed to. I just felt that something was wrong with the jobs I accepted or the people I worked with. It was never a good fit.

"If you bring forth what is within you, what is within you will save you. If you do not bring forth what is within you, what is within you will destroy you". ~Gospel of Thomas

"Your gift will feed you". ~Nicole McLean

I picked the wrong lane when I went to college. And because I picked the wrong path for the wrong reasons -- I didn't think that writing would feed me -- I spent fifteen years in misery. I tried. So very hard... but it took being stripped down (literally) to a weak, frail, fragile and utterly dependent mess to recognize that the thing that I've been doing since I was three was the only thing that my spirit wanted to do. I tell stories. I am a storyteller. I write about my life, about the lives around me... about the lives I envision in my head. That's what this vessel was created for.

I can, and often do, write all night. Writing comes to me in a way that working in government affairs never did. It gives me a purpose and rarely feels like work. It is challenging sometimes, but it never feels bad to do it. Finally, what is within me (writing) is saving me.


You were created for a reason and I understand that life is life and we've all got bills to pay and families to feed and support... but believe me when I say this... your gift will feed you. Find your lane and then pursue that thing. Take it seriously. Find the business aspect of it, and then take to it with positive energy.  I am not telling you to quit your job (heavens no). But if you are given a chance (and sometimes closed doors are actually opportunities)... take it. Your gift will feed you.  It may take a little bit of effort and some learning but you'll get there. We will get there.

In the meantime... the three conferences that I am speaking at this fall are listed below. *pinching myself to be sure that it is real*  I hope to see you and at least one of them.





I will be speaking about blogging your breast cancer experience on Saturday, Septempter 27th. in Philadelphia. Click the image to learn more information about this conference for breast cancer survivors.



I will be participating in a panel discussion about using social media to connect with patients in an authentic way. September 17-19, Philadelphia PA. Click the image to learn more about this conference.



I am speaking at the ePatient Connections Conference on September 15-16, 2014 at the Wyndham Philadelphia Historic District Hotel in Philadelphia, PA. Use discount code C491SPK to save 15% off of the standard registration rate by clicking here http://bit.ly/1nC3EfK




Jul 24, 2014

Natural health remedies for summer problems

Just a quick post today... a few natural remedies for summer health problems we all run into from time to time. Check the list out and let me know if you've ever tried any of these...

I swear by citronella candles in the cool summer evenings. But the others I haven't tried. What about you?



View Interactive Version (via Gompels Healthcare).

Jul 20, 2014

Can I talk about vaginas on a breast cancer blog?



From the opening scene in this commercial I am DYING laughing.... Every time I see it I just prepare for a good 20 minutes of guffaws, long after this 30 second video is over. I feel so badly for the daughter - and the husband who slides by quickly so he doesn't get caught in the carnage. She looks absolutely mortified.

I remember the days of my mom trying to talk to me about "girly/womanly" things and the pure terror it put in my heart. To be honest, I still feel oddly uncomfortable talking to my mother about some things. But to her testament, she keeps trying.

Before breast cancer, I wasn't actually shy but I was a bit reserved about discussing some things with some people. And I never wanted to discuss my vagina with anyone... ever.  Just. No.

But now?? Well, I'm accustomed to being stared at by medical staff and talked about as though I'm not exactly in the room. So I'm less reserved now. On a more serious side, dealing with all of the challenges with breast cancer and constantly reading and learning about my disease and my body has made me more open about talking about a lot of things that make other people uncomfortable.

I bring up vaginas today for a couple of reasons, one... I have been thinking about the connection between breast cancer and ovarian cancer and two, I received some samples of a great product and I want to tell you about it.

What is the link between breast cancer and ovarian cancer?  In case you weren't aware, there is a connection between breast cancer and ovarian cancer. Sometimes a woman who has one ends up getting the other. It has something to do with our genes and the mutations of those genes (you know better than to expect me to be able to fully clarify the science behind this stuff, right?). All I know is that I've known a few pink ribbon sisters who ended up battling ovarian cancer a few years later. *sigh*  Highly unfair and yet it happens.

I tried Healthy Hoo Hoo -- and I LIKED IT!


I concern myself with my vagina and my womb now probably more than I did before breast cancer. I have to. And that brings me to my second thing... Healthy Hoo Hoo. First, yes... this is a real product. Second, it is really quite great. (laughs)


I received some samples of this cleansing product and while I love the name and the packaging was adorable... I was sort of blah about it. I mean... I'm not really the sister to go around talking about how fresh I feel down there. *insert screw face*  That's personal.... (whiny voice)  But as I read the information that was shared with me and then strolled around the website, it all made more sense.


This is good stuff. They had me at PARABEN FREE. Parabens are nasty little additives that are in most of our cosmetics and toiletries. Never mind the fact that they are linked to cancer. *raises eyebrow* Seriously, parabens are no bueno. Our skin is our largest organ. What we put on our skin may end up in our blood stream. And the skin around our vaginas is especially sensitive. So much so that some girls were getting drunk by putting alcohol into their vaginas through tampons. Don't remember that story? Read this: http://www.kpho.com/story/15981315/teens-using-vodka-tampons-to-get-drunk

I digress.

So, now that we're clear that our vaginas are really quite special and need to be treated with care... do you understand how fabulous it is to have a product that is designed to cleanse that gentle area well but without those pesky additives that we don't need or want? It is beyond fabulous. Really. There are a lot of things that I don't do (that plenty of other women do) because I'm sensitive. My body reacts unfavorably to perfumed products down there. But this was just pleasant to use. I felt comfortable and fresh. *gosh I hope I don't sound like one of those sappy commercials*

Anyhoo... check out Healthy Hoo Hoo. Good products. I feel comfortable recommending them to you because I tried it and I liked it.

So... what have we learned today... 

Vaginas are NOT for alcohol-soaked tampons. Parabens are bad. Healthy hoo hoo is good. AND... if your mother comes into the bathroom while you're brushing your teeth wanting to talk about vaginas, you most definitely have the right to be mortified.





**I was compensated for the review of Healthy Hoo Hoo with free samples. However, my review and opinions about the products are solely mine. I was not paid to give a favorable review. There are affiliate links in this post.**


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What do you see when you look at yourself?

My Fabulous Boobies| What do you see when you look at yourself? Nic Nac Paddywack
Nic Nac Paddywack profile picture

It's all about the optics -- until its not. 


 I just had a lesson in optics -- about myself. I recently changed my profile picture on Facebook to this picture above. I changed my cover photo and I wanted a profile pic that sort of matched. I'm goofy like that... you can laugh at my neurosis. Its okay.

Since Facebook is a giant snitch - (laughs) - as soon as I changed the pic, I started getting these likes and comments from my friends. The picture change was in their news feed. So, they just commented. Same way I comment on their picture changes. Usually no big deal, but today... it became an entire head game that I didn't completely understand at first.

My friends are really lovely people who give me a very inflated sense of self sometimes. 

The comments were very complimentary. However, the voice in MY head was anything but. I remember the day I took the picture. I cropped the head shot from a larger full-length picture of myself. And I had torn myself apart from the top of my head all the way to my feet. Even now as I'm writing this, I am critiquing myself and seriously wondering why the hell I'm sharing this gawd awful picture.

My Fabulous Boobies| Do you see yourself the way that others see you?
*sigh*

At any rate, someone asked to see the entire dress so I posted the corresponding black/white version of this picture and more compliments followed.

*I'm starting to believe my friends all need glasses*

I looked at the black & white version of this picture. I looked at the color version -- which to me was even more horrific -- and I just sat there staring for awhile. I could explain all the things I see wrong with the picture... but it doesn't honestly matter. The truth is that it comes down to me being incapable of seeing in myself what others see in me.

All I see are flaws and imperfection.


I rarely look at myself -- in pictures or in the mirror -- and like what I see. I nearly always feel marked as flawed. You know how you can go to outlet stores and purchase discounted merchandise because it is irregular? That is what I see stamped on my forehead when I look at myself. IRREGULAR. I know that it is both incongruent and not helpful but I see myself breasts first. And it is not a good look.

If I were to talk to another survivor about these negative self-thoughts, I would probably laugh and tease her (to get her to laugh as well) about how beautiful she was. Tell her how her scars (both real and mental) did not define who she was or how her beauty was interpreted by others. Flawed things are still quite fabulous. The uniqueness that a flaw or a scar brings cannot be replicated.

Scars, flaws, imperfections... make us all unique and beautiful. I know this... and yet I still spent about an hour ripping myself to shreds for no good reason.

http://fabulous-boobies.blogspot.com/p/store.html
Buy a shirt. Seriously. Now.
The comments from my friends brought me back to center. They reminded me that when people look at me they don't see my story... they just see my face. My smile. My eyes. The confidence that my short hair conveys. They see a woman who seems confident of herself, her life, her body, her size. They don't see my insecurities, my worries, my fears.

My friends blessed me by reminding me that I am not what happened to me. Today, breast cancer lost another battle to steal a piece of me from me. I may not be as perfect as I want the world to see. But the picture of me that the world sees is actually quite perfect. Just as it is. Just as I am.

 Flawed & Fabulous. 






Send Danny a card for his birthday

Danny Nickerson, 5 years old
My college roommate shared a very touching story about the little boy in the picture, Danny. And while I don't normally write about stories like this... that beautiful face just touched my heart.

Danny is a little boy with an inoperable brain tumor. He is 5 years old and lives in Massachussetts. His birthday is coming up, July 25... and what he wants for his birthday are birthday cards.

It seems that the kind of cancer that Danny has is pretty tough and most patients have a life expectancy of about 18 months. His mother says that he just loves to receive cards with his name on them because he recognizes his name when he sees it.

You can read the story here:  http://www.kgw.com/news/Boy-with-brain-tumor-just-wants-box-of-cards-for-birthday--267802461.html. But if you feel so inclined, drop Danny a birthday card this week. It is a very little thing to make a beautiful little boy smile.

Danny Nickerson, P.O. Box 212, Foxboro, MA, 02035



*I am not affiliated with this child, this story or the news outlet that reported it, in any way. It just touched my heart and I thought I would share it.


Jul 17, 2014

Stuart Scott gave the best speech on the Espys

My Fabulous Boobies| Stuart Scott gave the best speech on the Espys
Stuart Scott, cancer survivor
Last night Stuart Scott gave a truly remarkable and memorable speech at the Espys. As he continues to fight against his cancer, he is also sharing encouragement for all of us. Even though right now I'm going through my own fears about cancer recurrence... this speech really lifted my spirits and made me cry (in a good way).

He said this about fighting cancer, and I believe it to be true:

When you die, it does not mean that you lost to cancer. You beat cancer by how you live, why you live and the manner in which you live. So live. Live! Fight like hell. And when you get too tired to fight, lay down and rest and let someone else fight for you. 

Tweet: When you die, it does not mean that you lost to cancer. Stuart Scott.

This statement is so profound to me because so often the metaphor for fighting cancer leaves me feeling stressed out and overwhelmed. I feel pressured to be this superwoman some days... and honestly, some days I am just tired. And I want (need) to rest. So I thank Mr. Scott for these words. He gave my spirit some needed permission to be human and recognize my own fatigue. And to honor that. Without feeling as though I'm letting someone down.

As a survivor, I am going to ask all of the readers who are not survivors but who do still care a great deal for us who fight cancer... to be vigilant when you see a need you can fill. We (survivors and patients) cannot fight these battles alone. It takes our entire support system to make it. We need you to be there for us. So that we can continue to fight to be here for you.






Please let me know what you think of Stuart's speech. And leave a comment below.

Tweet this! Tweet: When you die, it does not mean that you lost to cancer. Stuart Scott.




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