ABOUT ME

This blog was launched in July of 2011.  It's barely two years old.  I would love to attempt to update a narrative bio, but I think bullet points may be easier. I have returned to update this page a few times and this blog will be five in July. Ready for kindergarten.

THE MEDICAL STUFF

  • I was diagnosed with invasive lobular breast cancer in July of 2006 after four months of imaging, in office biopsies and ultimately, the surgical biopsy that found what is known as the *sneaky* cancer.  I thank the tenacity of the initial radiologist, the radiologist at MSK for her persistence in finding that *density* when doing the core biopsy.  "If he saw it, it was there, I'll find it."  The surgeon who skillfully removed the area and the pathologist, THE PATHOLOGIST, who read those slides.
  • It was two months of running around and researching options before I ultimately had a bilateral mastectomy with tissue expanders that were exchanged for cohesive gel implants (gummi bears) which were still in clinical study at the time and approved (quietly) by the FDA in late 2012.
  • Yes, I have a family history of breast cancer.  There are, for all intents and purposes, five diagnoses of breast cancer among my mom, my sisters and me.  Four of those were pre-menopausal.  
  • Our family genetics is a mess.  I have mutations of unknown significance on both BRCA1 and 2 which as I understand, is sort of unusual to return that kind of result on both genes.  Oh well.  I also understand one or both of these genes may have been declassified but I have little faith in that information since only one lab using one methodology is, at the present time, able to verify any of this.  Also, I've not received any official notification which makes me even less confident in the integrity of The Lab. (The Supreme Court case will be heard within weeks so this may or may not be relevant if I fail to update)
  • Most recently, I tried to get my complete record from Myriad. Apparently, it's lost. Yes. Gone. Lost. At least that's what they tell me. Stay tuned.
  • I did eight rounds of chemotherapy (CMF) which was believed to be a gentler treatment protocol.  I never lost my hair.  I feel like a chemo fraud.  It's all about the hair.  However, I have ongoing cognitive issues that seem to have worsened and some seem to have jumped on the scene later.  My chemo was complete in March of 2007.
  • I am presently NED
  • My mom had primary breast cancer in 1987 and a second primary in August of 2007.  She had aggressive treatment in 1987 as there was nodal involvement.  In 2007, she had early stage disease.
  • My mom is now a metastatic patient.  Somehow, despite hitting the 5 year *celebratory* date, her cancer progressed to a rib.  There is no way of knowing if this was a dormant cell from 1987 or from 2007.  Each scenario is equally horrifying.  A stage IIB cancer resurfacing after 25 YEARS or a stage 1 cancer of an area that was being watched closely because of her history (and then more closely after my diagnosis) spawning a rogue cell that took over five years to activate. 

THE PERSONAL STUFF

  • I have two grown kids.
  • I was working in a high level accounting, managerial position (NYC commercial construction, unions, etc.. it doesn't really get much crazier than that) and had to step away because of chemobrain.
  • I spent at least two years beating myself up over my inability to perform at my job.  I blamed a changing work load, constant interruptions and a host of other things before I realized "There may be a problem."
  • I had a neuropsychological evaluation, was deemed to have issues "primarily around numbers," entered a clinical study (results not yet published) and realized I had to switch directions in life.
  • I began this blog with the help of the Visible Ink writing program offered at no charge to all patients at Memorial Sloan Kettering Cancer Center.
  • I embarked on a journey of volunteerism and I am well aware how fortunate I am to have the means to have done this for these past two years.
  • It may be time to start thinking about ways to earn a living.
  • A very dear friend told me, "Pursue your passion, keep doing what you're doing. It makes a difference. Things will fall into place."
  • Things are falling. Into place, I mean. There are times I am being provided a stipend or a consulting fee. I still only align myself with organizations or causes whose values, beliefs or products speak to my passions.
  • I'll never sell out. I won't endorse anything, not one single thing, for the sake of a payday. It's who I am, it's how I was raised. Plus, I suck at lying.

HOW I GOT HERE

  • The blog, which began as a means of me unclogging my brain became a vessel to the outside world.
  • People began reading and commenting and I became very active in Social Media.  So-Me which was just reframed to me as "So-WE" is the essence of So-Me: Community and collaboration.
  • My preferred platform is twitter and the blogs, recently added Linked In, have had a G+ account dating back to the days of "you need an invitation" but I haven't embraced that platform fully. Facebook WAS a means of stalking my kids, then became a means of keeping up with peripheral family things but now, worlds have officially collided.  There are no lines.  They are blurry enough to move seamlessly to have blended together "what I do" and "who I am" which is fine by me.
  • I stepped into the world of advocacy.  I began as a patient volunteer at MSKCC, a role I love.  Shortly after that, I sought active volunteer roles within the Love/Avon Army of Women.
  • Those volunteer roles opened many doors.  I found my voice.  I became the cliche.  I changed my entire life, completely switched paths at a point in one's life when you simply don't do that.  Except, if you do.  And I did.
  • There is a page with my "guest appearances" where you can see some of the places I've been, 2D and 3D.  And some writing.
  • I am passionate about research.  All research.  Across all diseases.  Once I discovered that passion, I found my true voice and I won't be silenced until I see REAL and MEANINGFUL change.

JUST STUFF
  • I live in NY where I have lived my entire life.
  • I prefer beaches to mountains, although a five day stay at Miraval in Tucson, AZ, the mountains are pretty damn awesome, too.  Proper attire is key.  I'd love to zipline but I wonder, "Will it dislodge my implants?"
  • I had the good fortune to return to Miraval almost five years after the first time I was there. It was part of a program for cancer advocates and it was off the charts amazing.
  • While I really wanted to zipline, I apparently decided to take on the most challenging activity available.
  • I love to know what happened to the timid, shy little kid because I can assure you, prior to now, there's no WAY I would even entertain a fleeting thought, and yet I did.... climb a 35 foot pole and then take a quantum leap. Yes, I was tethered. And terrified.
  • I support the research of Dr. Susan Love and her quest to understand the reason why some of us develop breast cancer.
  • I KNOW the metastatic community at large deserves far better than we have given them.  We should be funneling more of the research dollars into determining how to stop a metastasis from progressing.  Prevent death is not a priority and that upsets me.  Stopping mets in the first place is important but staking claims that this is going to help those whose disease has already metastasized is speculative at best and it troubles me.
  • I ONLY support organizations whose missions and beliefs align with mine.
  • I don't disparage against organizations with whom I don't agree.  This doesn't mean I won't say something.  It just means I will be respectful.  Always agree to disagree and ALWAYS with respect that we are all different and each of us has a right to our own beliefs.
  • That entire statement does NOT apply to snake oil.  Those people/organizations are committing murder.  Doctor Oz is coming very close. Ok, as of this update, he's crossed the line.
  • I tend to take things to an extreme when I know I'm right.  When it comes to evidence based medicine and good science, I know I'm right.
  • I hate headlines and sound bites.  If it sounds too good to be true, it's definitely NOT true.  So far, I've found no exceptions so I live by that rule.  Call me jaded.  It's the New Yorker in me.
  • Nothing on this blog has been put here because I've been paid or enticed in any way.  If I believe something is worthy of sharing, I will share. There are now things for which I've been provided a stipend or a fee.
  • I'm not a sell-out. If I don't feel a product is above and beyond, there isn't a fee large enough for me to share in the space.
  • I've gotten some street credibility and have had the privilege of being asked to consult or assist with some projects and in some cases, I am now being provided a consulting fee.
  • I feel the need to share that because I believe transparency and honesty is always the right way.
  • I feel uncomfortable sharing that because I don't want to seem like I'm bragging.
  • I'm more uncomfortable not sharing because it just feels dishonest.
  • Just because I like something, doesn't mean it works for anyone else.  The opinions are my own.  Respectful comments, regardless of oppositional viewpoints are always welcome.  It's how I learn.
  • I have a real thing for screaming headlines, celebrities dispensing medical advice and skewed statistics. Journalists who do that are irresponsible, and anyone who gives a celebrity a platform to share (or in some cases exploit) their disease must act responsibly. Those disclaimers at the end of certain commercials would be fine. Even though they are spoken so quickly, we are lucky to catch just one word, at least the noise would provide a hint to the audience to read the fine print.
  •  In medicine, the real celebrities are the researchers, the clinicians and those of us who live with a disease every day. And the award winners? The caregivers. They are in a category of their own.
  • I believe I am empathetic.
  • I live with passion.
  • I do have chemobrain, I defy anyone to challenge that statement. My brain was physiologically damaged according to every bit of research I have read.
  • Speaking of the brain, mental illness is a disease of the brain, not a behavioral issue or a problem with the mind.
  • If you wouldn't expect a diabetic to just snap out of it, extend the same understanding to persons with serious mental illness. The stigma must stop and it's up to each and every one of us to learn, to attempt to understand, to stop expecting things that are not possible.
  • If those of us whose brains are not diseased can't follow prior statement. There's just one thing TO DO. Quite simply, shut the f*k up.
  • When we force unrealistic expectations, even in the most subtle fashion, on those living with serious mental illnesses, we are part of a very large problem. And we may being doing further damage. 
  • I AM a breast cancer patient and I will be for the rest of my life.  And I defy anyone to challenge THAT statement.
  • I love shoes.  The more impractical they are, the more I like them.  I may snap an ankle one day.
  • Yoga DOES count as exercise.  And meditation.  Effective use of time and multi-tasking, too.
  • I can no longer multi-task thanks to chemobrain.
  • I was the person with an organized and alphabetized spice cabinet.  Today, I may not bring my mail in for three days.  Might not open it for another three....(ahem) weeks. 
  • Rhett Butler on all of that: Frankly, I don't give a damn.
  • Everything on this earth can be fixed if we try hard and work together.  Except death.  
  • Death is part of life but I can still be pissed off about what should be preventable or untimely deaths.
  • I love deeply.
  • I have nothing against the color pink aside from the fact that it's really not a flattering shade for me.
  • The pervasive pink culture?  Not for me.
  • I'm probably not militant enough for many but I've found that militant stances are most effective when tempered with a calmer approach.  In other words, some of my beliefs may be militant but if I don't speak in ways others may hear, being militant serves absolutely zero purpose.  Ditto judgmental.
  • I am judgmental but not in a bad way but as a means to change things I think can be made or done better.
  • I don't judge.
  • Each day, every day, I try to make a small difference in any way I can.
  • The only way to see the change is to BE the change.
  • I love those in my "virtual world" as deeply as I would if they were in my every day 3D world.
  • YES, that is possible.
  • I spend lots of time shaking my head in disbelief at where I am today and where I was in May of 2011 before I was evaluated for cognitive issues.
  • Collaboration is not a topic or a buzzword.  It's a call to action.
  • Patient engagement is an idea whose time should have been here a long time ago.  We still have far to go.  I'm all in.
  • Somehow, I already see how this "Just Stuff" list is going to continue to grow and evolve.
  • Stagnant stinks in every form. Keep moving, evolving, growing. It's never too late to become who we might have been. Thank you George Eliot for that brilliant and accurate observation.
  • I'm NOT afraid of dust ups and I'll jump in when I feel it's appropriate, like here
  • I'm REALLY pissed off about my mom's metastasis. Lots. 
  • I miss my dad.  Lots.  And then some.

18 comments:

  1. Ann Marie,
    After reading your excellent Stuff - I have only one question to ask: Where have you been all my life??? You are amazing!
    Looking forward to all future collaborations...

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    1. Me, too on the collaborations. I lovelovelove the connection we made. To paraphrase Katie Couric who was rephrasing someone REALLY famous....never underestimate the power of a group of type A women who are pissed off about something. We WILL push until we see necessary change.

      GIANT hugs...

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  2. HI AnneMarie,

    I am a three time cancer survivor, 2X Hodgkins, 1x Head and neck, total of 25 years survivorship. Also lost both Mom and Dad to cancer, Dad- Prostate, Mom- Lung. I have taken a similar path that you have, I volunteer for the American Cancer Society as a Hero Of Hope Speaker, Relay for Life committee member, etc. Try to give back. I now work on the cancer support site WhatNext.com as a moderator, help patients and encourage survivors. Cancer sucks, we need to do all we can so that we and our parents don't have to continue to be lost to it.

    You have a very impressive site. Nice work

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    1. Thank you, Greg.

      I do belong to WhatNext and I WISH I had more time to interact on the different support sites. This blog and the multitude of things I've gotten myself involved in eats up so much of my time!

      I'm still trying to refine my path and it's not so easy. I feel strong pulls to so many aspects of patient advocacy.

      I was just approached by ACS to participate (I think) in a lobby effort. It is something that I want to do...... I have to see what kind of commitment it entails!

      Again, thanks so much for sharing your passion, your story and for being so kind and complimentary.

      AM

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  3. Hi AnneMarie
    it's nice to see that this chemo brain issue is finally getting noticed or recognized.
    I had a bone marrow transplant for Leukemia (CML) back in 1996. Healthwise I am doing fine.
    I have tried to cope with chemo brain all these years (over 15) and I have all the tricks you can possibly imagine, except that I am getting to the point where this is really a handicap. I am an accountant like you were. At this point I cannot keep a job for more than a year and it's getting harder and harder to fake it :) and I feel it is getting worse. my social life suffers from this too since I don't remember if I have already told the same story twice nor the stories that my friends tell me (like telling me they're diabetic) :)
    my close family doesn't even realize this. I recently explained to my mom that I would soon be losing my job, again, and explained why (I am unemployed right now). She still does not understand that I cannot read a book. if I read a few chapters I would be unable to tell her what I just read...
    the list goes on... but someone needs to realize that this is not something that goes away, even after all the brain exercises and concentration tricks. This should really be considered somehow as a mental handicap and I would welcome any suggestions on the matter.
    thanks, Veronique (48 years old)

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    1. Veronique, hi!

      I nodded my head in agreement as I read your entire comment. Every word. I think I have found every trick in the book, too. Bill are now on auto pay and my patience is beginning to wear thin with it. Stress kicks everything up a notch and right now, there's some serious stress all around me.

      I DO know people who have fought for and gotten disability. If you haven't checked Idelle Davidson's site, you should! She has lots of information..
      http://yourbrainafterchemo.blogspot.com

      You aren't alone. There are researchers that are trying all sorts of ways to prevent/reverse this. No magic bullet. YET. But if we keep making enough noise....

      Thank YOU for sharing...

      AnneMarie

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  4. Hi Anne Marie,
    Wow, so glad I found your blog. I too had Invasive Lobular Carcinoma in my left breast in 2010, with about 18 months of subsequent chemo and surgeries. After an initial lumpectomy, we found a 2nd lump in the same breast via MRI and after all the holy hell that broke loose after finding that, eventually then had the same type of bilateral mastectomy you had. Truly hated the process of expansion, still not very comfortable with my Gummi bear implants but it's better than the alternative. Anyway.....just found your blog and am enjoying it immensely. You're smart and honest, two qualities I highly respect. What's your take on The National Breast Cancer Coalition, with their focus on The Breast Cancer Deadline 2020? Their site piques my interest, because I'd rather we spent the bulk of our time on ending BC, vs. just trying to generate awareness and treatments. I have a 17 year old daughter and don't want her to have to go through this, so this org is on my radar screen. Interested to hear what your take on them is, since you seem to have a really good grasp on the various BC orgs out there. I'll be back to read more. Thanks for sharing your story. Best, Claudia

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  5. I was dx in 2007, HER II postive and 9 of 17 lymph nodes positive, not sure really about the lymph node numbers, I sure I'm close, BUT Chemo Brain will not allow me to keep numbers in my head anymore. I too had a very challenging job , 17 employees, 2 offices to run, I LOVED it. Went back to work after completing treatment....I knew I was "foggy" but after 8 mths off work thought I was doing so much better. First week back, 3 meetings, I listened, took notes, then had no idea when I got back to my office what the notes meant or what they were discussing. I had worked in the same industry for 25 years, I always knew what was going on, had imput, etc. I lasted a month. Ran my retirement calculations at 51 years ( I had NEVER thought of retireing before BC) applied for SS disability, supported by my oncologist, and walked in the following Monday at told the Chief, "I'm done...." I left that day, sent my staff an email from home and never went back. I got SS disability too. Thank goodness because I really could not do my job, It is still so strange to me the things my brain was always able to do and now not so much. Thankful to be a survivor though! PS spelling is also a problem, in case you didnt notice! :)

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  6. Hello everyone - you have my utmost in respect. I'm from the UK and had treatment for breast cancer in late 2013. The medical profession seem to deny the existence of chemo brain! Yet from the little research I have done and the others who have spoke of the symptoms I have concur. I cannot do the job I had but people look at my as though I have landed in a space ship as I try to explain why! Why is it so hard to be recognised. We're not stupid! In fact even if I'd known about this I would still have had the treatment (high nodes involved) I'm 54 and just want my occupational pension (the one I paid into which said if I became permanently incapable of doing that job then they would pay the pension early) but I cannot seem even to find research to support the fact that it is permanent - and my oncologist does not support me "because it's not like I have Muscular Dystrophy" yes she really did say that. I look for a specialist in the UK - I'll pay if needed - but cannot find one! Feel like the forgotten survivor :-) I have been the same (according to hubby) since 2nd round of chemo) Spelling / thinking/ everything is hard. Multi-tasking impossible. And I'm someone who held down a high flying very data focused analytical job (with a first class honours degree). I is one angry lady. Wishing you all well xx

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  7. Hello everyone - you have my utmost in respect. I'm from the UK and had treatment for breast cancer in late 2013. The medical profession seem to deny the existence of chemo brain! Yet from the little research I have done and the others who have spoke of the symptoms I have concur. I cannot do the job I had but people look at my as though I have landed in a space ship as I try to explain why! Why is it so hard to be recognised. We're not stupid! In fact even if I'd known about this I would still have had the treatment (high nodes involved) I'm 54 and just want my occupational pension (the one I paid into which said if I became permanently incapable of doing that job then they would pay the pension early) but I cannot seem even to find research to support the fact that it is permanent - and my oncologist does not support me "because it's not like I have Muscular Dystrophy" yes she really did say that. I look for a specialist in the UK - I'll pay if needed - but cannot find one! Feel like the forgotten survivor :-) I have been the same (according to hubby) since 2nd round of chemo) Spelling / thinking/ everything is hard. Multi-tasking impossible. And I'm someone who held down a high flying very data focused analytical job (with a first class honours degree). I is one angry lady. Wishing you all well xx

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    1. Oh Boy... I know we have a difficult time in the US getting disability pay.

      The best thing I can say is for you to start googling to find some of the studies that have been published. It's WELL-documented that this lingers in up to 30% of those treated for breast cancer and can stay that way even 20 years after treatment is complete (likely other cancer types, too.... the studies seem to focus on breast cancer). I understand and know exactly what you mean. I'm sure many others do, too.

      See if you can find a neuropsychologist who specializes in working with cancer patients. They can test you. The tests are tailored to pick up on those subtle differences that cause the issues with everything you describe.

      Check the names on the journal publications to see if there is anyone in the UK or attached to a research center in the UK. Start there. Don't give up. No, it's not Muscular Dystrophy but it IS debilitating and has caused many to lose careers.

      Good luck. Some names to google for starters: Patricia Ganz and Tim Ahles. There are now many others but they were two that were in the forefront to document the side effects. Mark Noble is another researcher who is looking at the damage in the brain caused by specific chemo drugs. It seems to me you have the right to your pension, you just may have to do a little work to prove that you are suffering.

      Forgotten survivor. That's so sad, but so true.

      xoxo

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  8. Hello AnneMarie,

    We are no doubt long-lost sisters. Not only am I survivor of breast cancer (1995, mastectomy; 2003, lumpectomy times two, chemo and radiation), but I saw myself in many of your self-descriptions above. Yep, sisters. :-)

    In 2005, I had psychological testing due to a progressing dysnomia (inability to recall words.) I tested as "impaired" on the verbal naming tests. However, I don't think even the psychologist tied my problem in to chemobrain. For that matter, neither did I, and I am an RN. I've always been tough and resilient, so no treatment for cancer was gonna get ME down. I think that's called denial. ;-)

    That said, the worst parts of the treatment for me were the two weeks I was undergoing chemo and radiation simultaneously. It's been ten years now, and I still don't have the energy and motivation I had prior to treatment.

    I am no longer able to work. The unrelenting fatigue combined with my underlying neuromuscular disease finally got to me. So....I'm retired at age 61, after a 37 year career as an RN.

    Like you, I have immersed myself in social media and volunteer work. I write on behalf of nurses and nursing. I'm probably considered radical, but not militant. I publish a website upon which other nurses share their views and opinions. It started out as a website for me to air my grievances with a prior employer, and evolved into something else entirely. I loved nothing more than mentoring other nurses when I was working, and now I'm able to do it online! I also volunteer on a busy Lost and Found Pets page in my hometown of Pensacola, Florida. I consider volunteering to be my soul food. It doesn't pay in cash, but the rewards of volunteerism make life worth living.

    Come see me sometime on http://www.guerrillanurse.net. I go by the Twitter handle "GuerrillaNurse." How I came up with that name is yet another story. :-)

    Love your page! I feel less alone. Thank you for that.

    Sincerely,
    Melissa Brown RN
    GuerrillaNurse

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    1. I found you on twitter and I'm going to your blog in a bit! (tomorrow - bit ... )

      Nice to meet a new friend!
      AnneMarie

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  9. Hi Anne Marie, sorry I'm Eva and don't know who to turn...
    When I was 34 years old, while we were trying to have a baby, I had a breast cancer. So I froze my ovules for now, 5 years later, be able to stay pregnant. However, the oncologist left us speechless when, last month, he told us that if I continued another 5 years with Tamoxifen, the treatment would be more effective. Now we have to decide between treatment or reproduction.
    I don't know... if you had more information, if you knew someone who could help us or if you could do it...
    Thanks in advance and congratulations on what you do. Kisses from Spain, Eva.

    ReplyDelete
  10. Hi Anne Marie, sorry I'm Eva and don't know who to turn...
    When I was 34 years old, while we were trying to have a baby, I had a breast cancer. So I froze my ovules for now, 5 years later, be able to stay pregnant. However, the oncologist left us speechless when, last month, he told us that if I continued another 5 years with Tamoxifen, the treatment would be more effective. Now we have to decide between treatment or reproduction.
    I don't know... if you had more information, if you knew someone who could help us or if you could do it...
    Thanks in advance and congratulations on what you do. Kisses from Spain, Eva.

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    1. Hi Eva,
      I hope you see this. Please please please talk to you doctor to find out what he means when he says "more effective" -- He should be explaining what this means to you by saying something like this:

      "At your age, of 100 (or 1000) women who stopped taking tamoxifen after 5 years, **this number** had their breast cancer return" And then, compare. "At your age, of 100 (or 1000) women who took tamoxifen for 10 years, had their breast cancer return."

      It is only when you have the information presented in a way that makes sense that **YOU** can make the decision that is best for you. To say it's "more effective" without giving you a true understanding of the real benefit or risk isn't giving you any information to make a decision based upon the evidence.

      Please email me - I will be happy to explain what I mean if this isn't making much sense. anncicc@gmail.com ...

      Sending hugs and kisses from NY,
      AnneMarie

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  11. In your early statement, you stated you are "NED". What is NED?

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    1. No Evidence of Disease = NED
      My preferred wording, although what I like may not appeal to all and I will always respect the choices of others
      :)

      Delete

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