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Living and Coping with a Diagnosis of Cancer

Discussion in 'GatorTail Pub' started by lacuna, May 2, 2019.

  1. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    @lacuna been away from the internet for the past few days, just read your latest missive, certainly has some very positive possible outcomes, as said before you are in our thoughts here in Irvine hoping for the best possible one :)
     
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  2. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    An explanation

    As I mentioned earlier I have a neurological condition that has virtually destroyed my balance and stability. From time to time it also affects me in other peculiar ways. One is an occasional inability to pronounce words with multiple syllables. I become tongue tied and garble them. Chris texted me to tell me he had arranged for Joanne Virgilio to accept me as her patient. When speaking with Trucker about my appointment to meet with Dr... Vrago...? I found this was one of those times. I stumbled and struggled for a while, finally gave up and she became 'Frageelee'. A word I could say with ease. If you are a fan of the movie "A Christmas Story" as I am, you will remember the father, played by Darren McGavin wins a "Grand Prize" in a contest he entered. When the crate containing the fishnet covered leg lamp prize arrives it has a "fragile" label attached to it. The dad exclaims, "It must be Italian! It says frageelee!"

    That, I could say.

    I relaxed, tried saying the name the next day and was happy to find my ability to correctly pronounce Dr Virgilio's name was restored to me. When I told Chris, he laughed and said he was sure she would laugh, too. I think he's right, but I have not yet told her. Only when I speak of her with others is she Frageelee.


    Preparations

    Chemo infusions are caustic and can cause undesirable damage or deterioration to veins and surrounding tissue when infused directly through an IV. There are other disadvantages, but overall having and using a port placed under the skin is the better choice. The day after meeting with Frageelee mine was placed placed 3 inches below my right clavicle. The port is approximately the diameter and thickness of a stack of 4 or 5 quarters. Slightly triangular with rounded edges, it has 3 Braille like bumps that can be felt by the nurse when accessed either for a blood draw or my infusion of Carboplatin. A hooked needle is inserted into the middle of the 3 bumps. The 'skin' or diaphragm cover is designed to close when the needle is withdrawn after accessing the port. An hour before the port is to be accessed I apply lidocaine to numb the area. It does what it was designed to do and I feel no discomfort or pain when the needle goes through my skin into the port. A narrow tube is attached to the port. It runs 'north' to a point immediately above my clavicle where it makes a U Turn, connecting to another tube inserted into my jugular vein. That tube runs 'south' almost to my heart. The bump made by the port is visible but covered by most of my shirts or collars on other garments.

    Before I left the OR, and still fully numbed, a hooked needle with a short connective link was inserted into the port and a protective cage of sorts taped around it to prevent it from being bumped. It was preparation for more prep the next day when the port would be accessed and inserting the needle at that time would have been more painful than it normally would be after the incision was healed. The incision was made an inch above the small lump over the port. A smaller puncture type opening was made where the tube makes its U turn.

    As all ports have names - Gulfport, Newport, Mayport, etc. - I wanted my port to have a name. I settled on C-Port, the C standing for a variety of terms that might fittingly apply depending on its use or my mood. Cancer, Chemo, or Carboplatin being the obvious choices. Chernobyl also comes to mind, but another place in my home carries that label. Care, for the gentle and kind ministrations of the excellent oncology doctors, nurses and staff. And Courage. And Cure.... Colorado, Columbine - the beautiful state flower.

    Following familiar instructions to consume no food after midnight, and only clear liquids up until 4 hours before the placement of the port under my right shoulder, I prepared for this small surgery. I met with the hospital's outpatient surgeon who was putting the port in me, a tall, dark haired man with glasses. Though attentive and kind, he had a brooding look about him and bore a vague resemblance to actor Jeff Goldblum.

    The nurse anesthetist had told me I would be put lightly under and would not remember any of the details of the surgery, expected to last about 30 minutes. Well, they were wrong. Though I felt no pain from start to finish, I remember almost every detail - and they will remember me. :D

    When I was wheeled into the surgery room music from "Les Miserables" was playing. Delighted me. One of my very favorite from start to finish. Expecting to lose consciousness and wake in recovery a split second of instant later, I was pleasantly surprised to find myself fully relaxed and conscious as Goldblum began installing the port. I lied back to enjoy the music and when Fantine began her solo, I sang softly along with her. The nurse giggled a little but didn't tell me to be quiet so I kept singing. She later told me they had decided it wasn't necessary to take me under, that a lesser degree of sedation was adequate.

    _________________________________________________________

    More prep work the next day
     
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  3. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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  4. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Thanks, J. Sports play by plays are above my pay grade, but might be able to fake a few here or there. A lot of TV time is tuned to sports Trucker likes to watch, so have absorbed a lot through osmosis.

    Like the lyrics, my favorite Airplane song.
     
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  5. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    First meeting with Doogie Howser and first access of C-Port

    Back to the hospital the next day for my first consultation with the physician selected by Frageelee to plan and oversee my radiation treatments. And no joke, he has a strong resemblance to Neil Patrick Harris with a beard. When I told my daughter who he looked like before she met him she thought I was kidding. She had met Harris a few years back and agreed the resemblance was strong enough to assign Dr Radiologist the nick name Doogie Howser.

    "Dr. Doogie"
    [​IMG]


    Neil Patrick Harris

    [​IMG]


    Dr Doogie explained how the scan I was about to receive was not a diagnostic scan, but one that would make a map of my body and effected organs. Lasers would be used to pinpoint 3 targets on my body that would then be tattooed to act as guides for positioning lasers when I was positioned on the table for each radiation treatment. Accurate positioning is crucial. The objective is to shrink the tumor while afflicting as little damage as possible to other unaffected organs. The map would then be entered into the computer along with other information to program the radiating machine to beam the radioactive photons where they are intended to go. He gave a thorough explanation and answered the questions Trucker and I had. I commented it would take a physicist to set up a plan of this type. Dr Doogie agreed and told us the hospital has one on staff who works closely with him and the other radiologists to program all the individual radiation therapies received by cancer patients being treated there.

    I was then escorted to a dressing room to change into standard issue polyester. Yuk. Then on to the CT mapping room where the cage protecting the port site was removed and a contrasting dye was injected through the needle placed into C-Port the previous day. I stretched out on the sheet covered but unpadded carbon fiber bed with a foam block for a pillow. The tech had me bend my knees and a flexible blue mass was positioned under the lower half of my body. I don't know how they did it but it soon hardened into an inflexible casting designed to hold my body into the same position each time I come for treatment. Again - positioning is crucial. The bespoke casting is navy blue but resembles the sort of molded cardboard like packing material that protects things shipped from one location to another.

    When the dye had taken effect the CT scanner began its work, whirring and circulating in conjunction with the 3 lasers pinning me with their beams on my belly and each flank. It took approximately 30 minutes as best I recall and the techs checked and rechecked their work to be certain. Then Dr Doogie came in to ascertain the positioning and sign off on it.

    Dr Doogie and Frageelee were in agreement that the M D Anderson program they found was the best approach to shrink, perhaps even eliminate the unwanted beast occupying space within me while preserving my limited mobility. Wisely, they made no promises. The initial phase of the treatment runs 6 weeks, Monday through Friday. On Mondays I have my once a week infusion of Carboplatin in Frageelee's clinic, then drive to the hospital for the radiation treatment. Tuesdays through Fridays it is radiation only. At the end of the 6 weeks I will have another diagnostic scan to determine if the beast has been reduced in size, and how much smaller it has gotten. The strategy will be reevaluated and adjusted if necessary. As of today, Tuesday May 7, I have had 2 weeks and 2 days of the 6 week initial treatment. I sense progress for one highly significant indicator. My level of pain, which at times had been severe since before the surgery to the first day of chemo / radiation, has been reduced 90 to 95%. I was sparingly and cautiously having to take oxycodone to manage some of the more severe attacks, but have not had the need to take one since the evening of the first Monday's treatment. More than 2 weeks ago. My doctors are pleased but cautious, only commenting "it's doing what we want it to do." No promises, still a long way to go.

    ________________________________________________________________

    The price to be paid ...
     
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  6. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    progress, one step/treatment at a time... thanks for the PBP and for your willingness to share, it helps us all.

    I am partial to White Rabbit and Volunteers as well, had a White Rabbit black light poster in my several rooms during my UF days, purchased from Pamme Brewer at the Subterranean Circus....
     
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  7. g8rtrucker

    g8rtrucker VIP Member

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    Lacuna and I spent many a youthful hour in the Circus. It and Chuck's Record Bar were partially responsible for my less than stellar grades my first 2-3 years at UF.:D
     
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  8. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    another funny note, Pamme Brewer was in my Spanish class until she got expelled for the library photo shoot....
     
  9. kurt_borglum

    kurt_borglum VIP Member

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    Got to ask, "library photo shoot"?
     
  10. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    A History of Alternative Publications at the University of Florida - The Fine Print

    Charlatan Magazine
    Written by students from both the University of Florida and Florida State University, Charlatan Magazine was published five times a year between 1963 and possibly into the late 1960s. It was rated America’s number-one college magazine more than once. It catered specifically to students, but not necessarily just UF or FSU students.

    Famous for its scandalous feature girls, Charlatan Magazine crossed the line in 1967 when editor Bill Killeen gave the thumbs-up to publish a completely nude centerfold photograph of Pamme Brewer, a UF co-ed. The photo caused an uproar in the Gainesville community and on the UF campus. Brewer was put on “social probation” (whatever that means) because of her “shameful” actions, and her parents withdrew her from the university to keep her out of trouble (see cover of Charlatan on this page).

    Like many of its predecessors, Charlatan Magazine focused on the desires of its target audience, and what the students of the 1960s seemed to want – and want a lot of – was sex. Jokes, cartoons, essays and advice columns relating to sex fill the pages of each issue. And if it’s not sex, it’s making a mockery of the established university order.

    Although Charlatan Magazine was not officially affiliated with the University of Florida, it certainly caused a whole slew of problems for the administration and will not be forgotten as a facet of our history.

    _____________________________________________________________________

    I've heard the picture was taken in the library but don't know for sure. Bill Killeen owned the Subterranean Circus, a head shop located in an old house in the 100 block of SW 7th Street. Now a parking lot.

    Google Maps
     
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  11. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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  12. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    and I was among the sitters & protestors, all night, Tigert was ground zero, many similarities to parts of the novel The Strawberry Statement many of you may have read 'back in the day'[​IMG]
     
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  13. wrpgator

    wrpgator GC Hall of Fame

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    Lacuna, I just saw this. Thoughts & Prayers. Sounds like you have a good med team.
    I've heard the C diagnosis twice. Testicular in 2009, prostate 2014. Mine didn't require chemo, but had 25 radiation sessions for the testicular cancer.
    God bless you kiddo.
     
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  14. gatorjjh

    gatorjjh A Gator with a Glass half full attitude Moderator VIP Member

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    sounds like you are in a very good place, physically and in your spirit, happy for you
     
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  15. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Apologies for the earlier, incomplete entry prematurely posted when I mistakenly keyed reply instead of preview. I'm going to delete it when this is posted.


    Life continues in a state of delighted amazement. Living here intoxicates me. I wish we had moved to Colorado years ago. And no guys, it's not the weed, it's the whole package. The openness and quintessential 'spacious skies.' The views from both the front and and the back of our home. Sitting on my breeze bathed patio I am encircled from northeast to southwest in the welcoming convergence of the steep hill that delays the morning sun, with a distant rocky ridge running southeast to southwest. It makes me feel comforted and protected. The hill is dotted with old cottonwood trees and junipers and home to several species of critters that wander into our yard. A brown rabbit was grazing on our grass 25 feet from me earlier today as I worked on this post. There is a bike trail on the edge of the ridge where cyclists and hikers can be spotted on and off throughout the day silently pedaling or walking in the distance. Our home is one of scores in neighborhoods grown up off South Camp Road in the Redlands valley between the hills and ridges of the area and the magnificent Colorado National Monument to the west.

    The neighbors are friendly, welcoming, as are all the people living here with whom we have had contact. Coloradans are consistently kind and helpful, be they native or transplanted Californians. Most of our neighbors have sitting areas on both the front and back of their homes. They visit in the street while walking their dogs, gardening or taking the time to chat while sitting by their front doors.

    It's been a while since I wrote anything. Time has been spent absorbing and reflecting. A time of adjustment and revaluation. At this point I've little to no energy for the several projects either started or planned. My docs tell me the energy will return after the initial phase is complete. I will have a respite for a few weeks before phase 2 begins.

    The regimen has been brutal and I am now more than half way with 3 weeks and 3 days on the books. Five afternoons a week I have my daily tryst with Scotty, a complex True Beam radiotherapy system engineered by Varian that reminds me a little of a huge hulking Caspar the Friendly Ghost. Scotty has a massive helmet like head and 3 arms that open wide to embrace each patient coming to receive the streaming beams of photons that both damage and heal. Each day I lie on the carbon fiber table to be slipped under Scotty's intense focus, I undertake an imaginative enterprise and ask Scotty to beam me up to a place I would like to go. A favorite spot is Sanibel where I remember seashells and sunsets and dinners at Doc Ford's. It makes the 15 or so minutes go a little faster than they would if I lay there worrying about the unavoidable damage being done to my body along with the health restoring, life saving benefits of the incoming beams. A harsh trade off.

    Scotty's arms rotate around me, with two of them scanning and recording, a third scanner of another type for a different type of therapy, and the bowed head that emits the prescribed dosage of radiation from a large, square lens. It reminds me of the lens of a giant watch. Scotty has distinctive sounds for his various functions. When the arms are rotating scanning the body lying within its scope, they whirr. Changes in function or direction are sounded with clicks. A higher pitched hum accompanies the delivery of the photons.

    My trysts with Scotty are well chaperoned by a crew of 4 of the kindest, most empathetic people I have met in my life. I asked them what training they had to undertake to become radiation therapists and learned the work formerly require a 2 year degree before further specialized training, but now a 4 year degree is a prerequisite in their field. First they train as X-ray techs, then further train in their specialty.

    This is a picture of a VarianTrue Beam with its scanning arms stretched open.
    [​IMG]
    And another with a patient lying on the cantilevered carbon fiber bed waiting to be pushed into place to receive treatment.

    [​IMG]


    (Yes, I know I broke a Pub rule about posting multiple pictures in one post, but for the sake of comparison we do allow occasional exceptions. :ninja3:)

    While I am being treated Trucker waits for me in a small sitting area set aside for radiation patients and people who accompany them. For the first 3 weeks we were a tight little unit that freely opened up and shared our experiences with one another. Dubbing ourselves the Commiseration Crew, we comforted, supported and encouraged each other. The other Judy (breast cancer) always came alone, her husband immobile and recovering from knee surgery. Patrick was reticent to open up at first but our upbeat exchanges with Judy and his supportive wife gave him the courage to tell us of his throat cancer and his difficulties coping with a feeding port. Sue, never without a smile on her worn face, prematurely aged by 50 years of smoking looks years older than her 'never smoked' husband. Their treatment regimens changed - as will mine in 3 weeks - and further treatments rescheduled. Judy will continue with chemo only and Sue starts immunotherapy soon. Patrick is continuing radiation but a different time each day more convenient for him. We exchanged phone numbers and plan on getting together soon.

    The therapists tell me this sort of bonding is not unusual, it happens regularly among people brought together by circumstance in this small waiting room.
     
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  16. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Good News

    My doctors suggested genetic testing to confirm an apparent hereditary element in cancers found in my family for several generations. It's known as Lynch syndrome. The biopsy of the cancer revealed microsatellite instability within cellular structures. I don't pretend to know exactly what all this means, but my surgeon son and oncologist agree it bodes well for me and confirms I am a candidate for immunotherapy.

    To find out as much as I could about what sort cancers took the life of my paternal grandmother and her 3 daughters, I contacted first and 2nd cousins to ask them if they knew. They were able to fill in some blanks but the picture is still incomplete. The geneticist said we know enough. While looking through ancestry type information found easily on the 'Net, I was delighted to come across pictures of my paternal great grandparents. I knew their fascinating story but had never before seen pictures of them. My great grandmother bears a striking familial resemblance to my own father and Trucker said he thought she looked a lot like my own mother in her latter years.

    I posted her picture and her name and story on @RayGator 's Too Hot Mother's Day thread https://www.gatorcountry.com/swampgas/threads/sunday-may-12th-it’s-mother’s-day-in-the-usa.437971/ and received an unexpected response from @Gator515151. He recognized the name of my great grandmother as one appearing in his own ancestral family and wondered if we might be related. I'm not so sure he welcomed that idea. :p We exchanged several posts exploring the possibility and and the similarities in where our two families came from in southeast Georgia before settling in the same area of Alachua County around the same time. If the information as we have it is correct it means 51 and I are 3rd or 4th cousins descended from the same great grandmother and her in-laws. This great grandmother was married twice. She first married a younger son who subsequently died leaving her with 3 children. She then married his older brother and they had 6 children. If our information is correct then 51 is a descendant of one of the children born of the first marriage and I am descended from her second to last child born in her 2nd marriage to the brother. A tangled almost incestuous relationship creating cousins who were also half brothers and sisters.

    Click the link to Ray's thread and read the exchanges between 51 and me and the history of our mutual ancestors - Joseph Ann, Franklin, and Richard.
     
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  17. Gator515151

    Gator515151 GC Hall of Fame

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    I'm cool with it as long as I don't have to refer to you as Cuz when arguing politics on TooHot.
     
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  18. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    That's fine. :) There will be no arguments between us. It was fun discovering the connection.
     
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  19. Gator515151

    Gator515151 GC Hall of Fame

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    Yes it was, I had no idea the number of ancestors I had buried in that cemetery in LaCrosse. I thought they were all buried in Santa Fe.
     
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  20. lacuna

    lacuna The Conscience of Too Hot Moderator VIP Member

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    Finally Friday and the most welcome end of week 4. The brutal side effects accumulate throughout the week and my worst days are Wednesday through Saturday. It has gotten worse, as Dr Doogie warned it would, but the nasty side effects do ease a bit with no treatments on Saturdays and Sundays. By Sunday afternoon I will feel a bit better but my best days are Mondays and Tuesdays before the cumulative effects from the cycle of destruction rebuild.

    Though safe to be around with normal contact, my body is toxic and the dying, shrinking sections of the tumor and healthy tissue surrounding it are constantly being shed. You would not want me to sneeze on you. No one should share my food or drink, drinking glasses, plates, or eating utensils. All secretions from my body carry toxic waste. Even my tears. It is recommended I drink no less than 64 oz of liquid a day to flush it out. More is preferable. Three or four times a day I wash my eyes with eye drops to assist in flushing any accumulated toxins from the tear ducts. Some people who have not done this have ended up needing a stent in a tear duct to keep it from being permanently damaged from hardened, unflushed toxins.

    Fortunately we have several bathrooms as it is recommended I have a toilet exclusive for my own use. I've claimed the water closet in the master bath, as it has a door and fan. Instructions are to close lid and flush twice. I call this little space Chernobyl as no one with any sense would want to venture into it. Yes, the radiation has caused changes in my habits, but no one wants to read about that and I certainly don't want to write about it. Dr Doogie assures me the situation will correct itself when treatment is complete.

    Low level of energy is a constant, making it feel as though I am walking through waist deep water. But the worst is the utter exhaustion that will suddenly come upon me when I experience a crash. This happens unpredictably, suddenly, mostly towards the end of the weekly treatment cycle. Whatever I am doing, sitting, walking, standing - I will feel as though all my vitality, what little there is, forcefully pulled, sucked from my body. It is a visceral draining that leaves me spinning, totally depleted. The bottom comes hard and fast. It may last a few minutes or several hours. It leaves me gasping and in need of supplemental oxygen.

    There are moments of self pity, days when I feel discouraged, but I am blessed with a devoted husband and a supportive family to encourage me when I feel low. My son and daughter from Austin have both been here to visit and daughter is returning next week for another 6 days. These visits have helped sustain Trucker and me through the worst of it. It's been hard on Trucker, but he never complains, ever steady, ever there.

    We see our local children and grandchildren regularly. They stayed with us for 5 days when their parents took a much needed anniversary trip to New Orleans last week. The kids were well behaved and we enjoyed their company. Trucker and our older grandson played 9 holes of golf a couple of times. I hope they will do this a lot more. Trucker also plays cribbage with our grandson, a game he learned from his own father, taught our son who in turn taught our grandson. Something deeply satisfying about seeing 4 generations of family play a game handed down from father to son.

    Life will go on...
     
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