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You look Maaaarvvolousss!!!!
2008-06-06 09:16:00
shout out to billy crystal!ok, so i lost a bunch of weight during my recovery....well, about 20lbs, so not a BUNCH. but, my body has changed a lot because i lost both fat and muscle. (and a cantaloupe sized ovary which i never found out how much that sucker weighed). anyway, i look like i've been on a great diet, not like i have been to hell and back. the one bad thing about it is that i have lost all padding....and i mean ALL padding in my ass. not like i had much of an ass to begin with....i had a flat butt, but i at least had some sort of butt. now, i have nothing and it hurts like hell to sit for very long because my tail bone...bottom of my backbone bone... jams into the seat. it feels like i am a freak of nature and have grown a tail. needless to say, my workout plan is focused on building up a butt...simply for comfort! the best way i can describe it is if you were sitting on your elbow...yeah, that about sums it up. try putting the majority of your weight on your elbow and ...

The Magical Amount....
2008-06-02 15:32:00
The magical amount.....but not enough to hurt you.....the magical amount....its just enough to work!!!okay, so i stole the tune(along with half of the words) from one of those "Truth" commercials with the dancing cartoon horses.....anyway, my point is that the Sutent seems to be working. My belly is going down daily and i am NOT going to have to go in to be the human pincushion! w00t! w00t! it feels great to be reclaiming my body damnit! poor thing has been to hell and back and it is finally doing what i want it to do!so, short post, but full of good news! Sutent still works....dont know how well it works, but it's still doing something amazing in there...and i've only been on it for 6 days. THANK YOU MIRACLE DRUG.oh, on another front....i went out with a friend last night for the first time in 2.5 months...it felt wonderful....my life is slowly getting back to normal....its about damn time! I even helped bathe a horse yesterday...come on stamina...building...building....building ....

Back to the Future....Sutent!
2008-05-30 22:25:00
i officially started the 37.5mg dose cycle of sutent on tues. night. i will be done with the steroid taper on the 9th, so hopefully it will not effect the sutent too much and my fluid will go down in my belly without having to be drained again. that is the race against time....sutent working vs. the fluid building up to the point where i have to be drained again.go sutent...go sutent...go sutent!!!!will keep you posted on whether i am once again a human pincushion next week or whether sutent is winning.adios team bean saver!
More About: Future , The Future , Back , Back to the Future

MmmmMMmm Sutent.....again....
2008-05-25 04:04:00
well, i had my "next steps" appointment with dr. doom on thurs. i still have fluid in my belly and the nodules are still weeping....the steroids don't seem to be doing much other than making want to eat everything in sight. he asked if i wanted for him to arrange to have my belly drained again....i said heck no, not yet, its not that bad yet and it hurt so badly for the 24-48 hrs after it was drained before...i am just not ready for it again. he said that assuming i have the same response to the sutent as i have had in the past, it will help the nodules, hopefully stop the weeping completely and then the fluid will be reabsorbed into the body. i am hoping for that. holding out for that actually....but, if the fluid builds up too much, i'll have to go in next week and be "drained" again. yuck. i must say, that the best feeling in the world right now is wanting food. after 2 months of not wanting to even think of food let alone eat it, i now have my cravings back and am eating anyth...

okay....here's the scoop....finally.
2008-05-21 22:56:00
after some of you read this, i hope you will be able to understand just a little why i have not been able to write or talk to most of you. i truly have been having the hardest time with this recovery, no bullshit. i will go over what else i have been dealing with since the last posts about my injured piriformis muscle.also, whomever took it upon themselves to leave the jackass comment about me making them care and then leaving them hanging as far as the blog, they can fuck off...point blank. sorry if i offended anyone else reading, but i am not writing this for anyone other than myself. i am not writing it to "make people care about me". who would be so pitiful to do that? i am writing it for my sanity, to document my progress or lack there of, to let the people that ALREADY care know what is going on the easiest way possible as well as to let other people in my situation see that they are not alone. it was a rude comment and yes, i could have been dead for all this person knew. so,...
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having a rough time....
2008-05-17 14:38:00
sorry i haven't keep this up lately. i've been having a rough recovery. most recently, i had a bunch of fluid build up in my belly and i had to have it drained and was in the hospital for a week. hard to keep the blog up when you are feeling like complete shit, so cut me a little slack please. i promised to post more as soon as i am feeling up to it.thank you for your interest and support. i truly appreciate it.
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speedbump within the speedbump... :(
2008-04-19 18:47:00
this post isnt going to be the usual sarcastic kick cancer in the ass tone as i am still trying to recover from the surgery and it sucks. sorry i haven't updated the blog or talked to any of you, but i have been having a really hard time. plus, my meds tend to make me a little loopy, so my train of thought/writing is sometimes hard to follow.basically, to complicate things, i managed to injure the piriformis muscle in my left butt cheek. yeah, what the hell is that you ask? well, apparently i am unique and talented as well. the prirformis muscle is a little muscle underneath the larger glute-max, kinda smack dab in the middle of the cheek. the symptoms are similar to that of a sciatic nerve injury because the piriformis muscle tenses up causing all the muscles and ligaments that are attached to it to tense up and that puts pressure NEAR the sciatic nerve causing similar pain. my whole left side has been painfully tense and i have pretty much been in traction. the treatment is the s...

Just another speedbump in the road to a cure....
2008-03-28 22:29:00
thanks to all of my wonderful friends and family for all of your well wishes, support, flowers, bears, balloons, plant baskets, etc. i deeply appreciate everything and every member of team bean saver.well, as many of you know, dr. cold fish wasnt able to get the kidney out. they got the cantaloupe sized ovary out and it did have cancerous cells that were contained within the ovary itself, but they determined that they originated from the kidney and that my uterus and other ovary were fine, so they left them in. the kidney fought back and my surgeon wasn't able to get it out. lefty's last stand ended up NOT his last stand. basically, lefty had latched on to my colon and intestines like velcro which dr. cold fish did not anticipate. also, he would have had to sever my aorta as well as go chopping away at other organs in order to get it out and he didn't want to risk my life when i still have other treatment options with dr. doom. he was on the phone with dr. doom during and after m...
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And the winner is..........drumroll.....
2008-03-17 01:09:00
The Mission: Operation Lefty's Last StandThe Team: The Surgeon Generals11:30am the attack begins....CMC Main Hospital.Fingers, toes, legs, arms, eyes....everything is crossed. WISH ME LUCK TEAM BEAN SAVER!!!!
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UPDATE: Gonna be kickin' it oldschool
2008-03-12 18:38:00
had my final pre-op appt with the renal onc surgeon today....will be on my way to the generaal pre-op appointment at the hospital shortly.well, i thought that they were going to be closing me up using the cool plastic zipper thingy made by medizip that i posted a link to on a previous post, but today i learned that they are going to stitch me up the old school way. damn...i was looking forward the the whole "Frankenstein" effect with that thing on me. oh well.also, dr cold fish gave himself a 50/50 chance of getting the kidney out today. he said he is hoping that the tissue is soft enough that he can peel it back, clamp it and get to the vein he needs to get to. he said that the other vein(or artery) i dont know which one is which still...that he has to get to is no problem...its just one of them that he has concerns about.i told him that i was going to cross my fingers as they put me under so my fingers were crossed the whole time. he said he would cross his too....somehow i don't...
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Nothin' left on the left...
2008-03-09 09:18:00
okay. so i had a pre-op appointment with the obgyn onc, dr. T which i forgot to post. he did the full "girly" appointment and also informed me of what exactly he was going to be doing during surgery. he also informed me that the ovary is actually more like the size of a large cantaloupe, not a grapefruit. DAMN! no wonder the thing sticks out like it does.okay, so, surgery. while they have me open, he is going to take the ovary and send it down to the pathologist STAT to test it for cancerous cells just to CYA since it has not been biopsied. he said that there is some slightly abnormal tissue at the bottom of the ovary, but that it is all completely contained and that in the past when he has seen something like that, it has been cystic and benign. HOWEVER, if the pathologist sees trouble, there is the potential for a full hysterectomy...to take both ovaries and the uterus. dr. T thinks this is the least likely scenario and reassured me that he is fairly certain they would only be tak...
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Houston....we are a go.
2008-03-06 23:04:00
Monday March 17th, St. Patty's Day, Jen's b-day....now Operation "Slice N Dice" also shares this date. Surgery to remove the cantaloupe sized ovary and hopefully the kidney and surrounding "stuff" is scheduled for 11:30am. I am to check in at 9:30. I also have 2 pre-op appointments on March 12th. one is at the hospital for all of the preliminary blood work and medical history and meeting with the anaesthesiologist, etc. that one is at 3 and could last for up to 2hrs. the other pre-op appointment is with dr. cold fish to go over what im supposed to do to prepare for surgery, etc. the nurse mentioned something about "bowel prep". im not sure what that means, but i am not looking forward to it...why does everything always end up being about my bowels?! geesh!as far as the naming of the surgical team....i'll be taking suggestions as well as votes for favorites until Sunday the 16th. let's be creative people!!! half of you are designers or creatives! :P the winner gets...ummm...a nig...
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Name that Team!!!
2008-02-28 20:23:00
leave a comment if you want to name my surgical team. right now they are simply Team T because both of their names begin with the letter T.just to recap...one is an obgyn onc surgeon and the other is a renal onc surgeon. the renal onc is dr. cold fish and the obgyn onc is simply dr T, but he has a better bedside manner than dr. cold fish. both are honorary members of team bean saver.and no, "Surgical Nut Zippers" is not an option.

It's alive....IT'S ALIVE!!!!!!
2008-02-28 17:47:00
i think that's the line from Frankenstein. anyway, the pre-op appointment. well, it wasn't exactly what i was expecting, but each time i switch to a new specialist, that is pretty much par...they say they have talked to each other, but usually by the time i see the next one, it is 2 weeks and 100+ patients later and they don't remember shit. this time was no different. i was under the impression from dr doom that the surgeon, whom i will refer to as dr. cold fish, considered the kidney operable now...thus the pre-op appt. silly me to assume that having a pre-op appt. meant you were a candidate for oh, i dont know, an operation?!!once i got in to see dr. cold fish, he began by going over my scan and saying that the kidney was still not "ideally" operable. he said that the mass surrounding the vein and artery that connect the kidney to the aorta had significantly been reduced, but there was still approx. 2cm of cancerous "stuff" surrounding it and he would not know if it was possib...
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Have your people call my people and we'll work something out.
2008-02-25 16:01:00
for those of you that have been checking my blog to see how the pre-op appointment went...i apologize for not updating sooner!!! Dr. T, my surgeon, was called into emergency surgery last week and they had to reschedule my pre-op appointment for this tues, feb 26th at 4:30. the good thing is that morning, he is meeting with several other doctors during a "small tumor and kidney conference" and they will be going over my scans, laying out/finalizing my surgery plan, etc.so, i will try to update the blog in a more timely manner this time. sorry team bean saver!
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The little engine that could...
2008-02-18 17:28:00
i think i can, i think i can....i KNOW i can, I KNOW I CAN!!!!! The 3rd and final round of sutent worked...you can see the veins that connect the kidney to the aorta now. the cancer surrounding them has been reduced so much that you can see them! the surgeon can see them which means he can get the kidney out! i am no longer in the "inoperable" category. what seemed like an unachievable goal 5 months ago has been achieved...phase 1 accomplished. dr. doom is so pleased with my response to the sutent, he is all smiles each time i see him now. that just feels wonderful.the pre-op appointment with my surgeon is this thurs., feb 21st. i am excited and scared at the same time. the earliest that surgery could be scheduled is the first week in march. they cannot operate until i have been off of the sutent for at least 1 month. my last pill was jan 30. i have no idea when they will actually schedule the surgery however, i only know the earliest possible date. i expect to find out when they wa...
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Worse than the dentist
2008-01-31 15:19:00
last night was my last sutent pill for this round. the side effects hit me hard at the end of this cycle. they tend to build up, but this time it was like a smack in the face one morning....BAM!! we're here! tongue peeling, sensitive mouth, lack of taste, painfully dry skin around my nose and in other random places on my body, nose bleeds, fatigue and the never ending bathroom visits. oh joy! although i have mentioned that the side effects are a small price to pay if the "miracle drug" is working, it is definitely worse than the dentist.right now i am looking forward to a few weeks of normalcy...the side effects will slowly subside now and i just need to relax until my scan on feb. 11th.once again, finger, toes, arms, legs all crossed....it seemed to work last time so what the hell!
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Dates, Dates and More Dates...
2008-01-27 20:41:00
this is just a quick update on all of my appointments coming up. the Jan 23rd appointment went as usual, the only thing that came out of it was that they reduced my thyroid meds from 75mcg to 25mcg. other than that, same ole same ole. i was fighting a head cold last week which is not a good thing to have to do when your white cells are down because of the sutent, but i managed to kick it to the curb. :)okay, the upcoming appointments...the first one is on Feb. 11th for my next scan, yes, yucky, nasty, disgusting drinky dye. uuuggggggg. i have a follow up appointment on feb 12th to look at the scans and talk about next steps. then, on march 11th i have what will hopefully be a pre-op meeting with the surgeon. that's it. the only addition was the feb 12th appointment. i'll update if anything changes.tootles.
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One small step for WOman...
2008-01-12 05:45:00
one week into the sutent cycle. side effects are minimal still so i try to take this opportunity to visit with friends...before i get too tired and before my white cells are down too much. this time, i am still basking in the glow of good news of how great the drug is working...so much so that i am starting to take my life back. starting to see more and more of my friends and meet new ones. wanting to celebrate this first step in a long line of steps to beating this. i want to scream from the rafters...i want to brag to anyone who will listen....I AM WINNING!!!!one thing i want to bitch about. the sutent is really messing up my thyroid...they upped the dose to 75mcg because the second round of sutent messed it up more than the first. unfortunately, it takes the body a while to regulate itself with the help of the synthroid...5 to 6 weeks. so, in the meantime, my hair is falling out like crazy. not in clumps like with chemo, just all over like old age. this is a side effect of my thy...
More About: Small , Woman , Step

Mmmm....Mmmmmm...Sutent.
2008-01-05 19:15:00
can you hear the Mmmm...Mmmmm....Campbell's tune playing in your head as you read my title?HA! Back on sutent for what is hopefully the last round before surgery. started thurs night, so what is that, the 3rd....so, last pill is on jan 30. only 26 more pills to go. w00t! okay, okay, so small things make me happy now. i don't really have any interesting news to tell today, just wanted to document the start of a new cycle. carry on friends and loved ones...thanks for reading. keep on keepin' on and all that jazz. l8tr!

I AM A CANCER KILLING MACHINE
2008-01-03 16:53:00
Jan 2nd. follow up appointment. dr. dooms assistant, the immunotherapy coordinator comes into the room and has a big ole smile on her face. she says that dr. doom has plans for me and that i should be so excited. we chat for a bit and then she leaves as we wait for dr. doom.dr. doom comes in and starts off with his usual straight forward no emotion attitude and says that we should go look at the the scan first and then come back and discuss next steps. Field Trip!we all proceed to the mobile monitor in the hallway and wait as he pulls up my first scan from august and my dec 27th scan. he proceeds to point out the progress i have made. it is absolutely amazing!!! i AM a cancer killing machine thanks to my miracle drug sutent! i have an overall average of 50% reduction. the cancerous tissue in and around the kidney itself had been reduced by 50%!! 50% with only 2 full rounds of sutent. the best part tho...the icing on the cake is that the cancer "wall" surrounding my aorta has also be...
More About: Cancer , Machine , Killing

Dec 28th - the big call
2008-01-03 16:45:00
waiting, waiting, waiting...it is the worst thing. i hate waiting...trying to keep your mind off of what you are waiting for.ring, ring...FINALLY, the dr calls. he says that the scan shows that i have had some reduction. he needs to talk to the surgeon to see if there has been enough reduction to operate. he is in a hurry to get off the phone and try to get in contact with the surgeon.good news. the drug is working. it is actually working. i am now among the 30% of patients that the drug actually reduces the amount of cancer, not just slow the growth.yippie. another good day. after so many bad days it is great to have a good day. my luck has been so terrible...could it finally be my turn to have some good luck?!my follow up appoint to see my scans and get word about surgery or no surgery is Jan 2nd.fingers, toes, arms and legs all crossed again.
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Scan Day - Merry Xmas
2008-01-03 16:16:00
December 27th has finally arrived. My anxieties are high. i don't want to drink the nasty dye. i get to my appointment on time and am taken back into the "drinking room" and get settled in the little hospital bed to get my drink on. this time, they off me an alternative to the 6 mega-shots of nastiness. they offer me what they call a "Banana Smoothie" and i only have to drink 2 10oz cups of it vs. the 6 6oz cups of nasty. supposedly the side effects aren't as bad either. BRING ON THE BANANA SMOOTHIE!well, let me tell you, banana smoothie it is not. oh yeah, it smells like bananas and looks like a white half melted milkshake, but it feels and tastes like milk of magnesia. it is disgusting. but, i dont have to drink as much of it, so i drink on. halfway through the first 10oz of yuckiness, my banana smoothie decides it wants to come back out and i grab the nearest trash can which just so happens to be the same height as the bed. hmmm, i guess im not the first to need it. manage to...
More About: Scan , Xmas , Merry Xmas , Merry

Die, die, die my darling!!!
2007-12-19 20:11:00
i am a walking, cancer killing machine...or so i hope! tonight is my last sutent pill in round 2 of the sutent cycles. thankfully, i wont be feeling like ass over the holidays since my 2 weeks off starts tomorrow. yippie! the side effects will slowly subside over 4 or 5 days and then i get to have over a week of normalcy. its funny what you start to be thankful for...i am thankful for feeling normal for a day. w00t!the only day that will suck is the 27th, the day of my scan. my onc nurse told me that i will have to do the drinking dye, not just the IV dye. yucky mcyuckerson!! i have had 5 CT scans and have only had to drink the dye once. that stuff is disgusting. they give it to you in 6 cups, like they are lining up shots on a bar. then they ask you what your favorite drink is so they can add it to the cups to "cover up" the taste of the dye. NOTHING can completely cover up the taste, but ginger ale does a pretty good job. anyhoo, you have to drink each of these mega shots within ...
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2 Dollars - I want my 2 DOLLARS!
2007-12-17 02:31:00
The drug that i continue to refer to that i am on, sutent, is a whopping $8500 for 28 pills(1 cycle). and no, i didnt forget the decimal point. with my insurance, i pay $2500, then all Rx after that are completely covered because 1 cycle of sutent alone meets my deductible. the reason these little capsules of diamond dust cost so much is because the drug is so new and only available through pfizer. the drug also has limited use currently because it has only been tested on a few things. if they found enough other uses for it, the cost could come down. this is another reason the post below is so exciting. whether my nerve bump is related to the cancer or not, the fact that the sutent seems to have an effect on it is big news in itself. if i was a dr. with a patient that could put me in the the pages of medical history, i'd be pretty damn giddy too.
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Dr. Doom DOES Laugh!
2007-12-12 01:17:00
3 weeks into the sutent cycle, i have to have my white cell count, platelets and hemoglobin checked to see if i can safely finish the 4 week cycle. so, today i had my 3 week checkup. i wore my "My oncologist is better than your oncologist" t-shirt...hoping for a smile to appear on dr. dooms face like at the end of the grinch that stole christmas. not only did i get a smile, he was laughing and blushing...it was great. i told him that it is my goal to make him laugh every appointment...he told me that it is his goal to get the bad kidney and ovary out of me.after my exam, he started talking about his hopes for being able to talk surgery in the first of the year...after they get a look at my scan on Dec 27th. I was in shock...he never talks about maybes...he is usually straight to the point, no fluff, nothing that isnt based on fact. But today, today he was hopeful and very optimistic about how the sutent is working. today was the best day! I was re-energized with hope...im not overly...
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Sutent - he loves me, he loves me not...
2007-12-03 04:16:00
this post will be short. the side effects of the 50mg 4 week cycle of sutent tends to sneak up on you. the first week or so into the cycle is not so bad, after that, the side effects start to build up. you have good days and bad days...bad days include extreme fatigue or not being able to stay out of the bathroom and having to force yourself to go do something cuz you know it is good for you to get moving...even if it is just to the store for a quick outing. good days include less time in the bathroom and enough energy to feel almost normal again. today was one of the bad days and im barely in the middle of week 2.i do have to admit tho, i have been lucky. i have read multiple other accounts from patients on sutent that have more and worse side effects than i do. if the nausea, diarrhea, sensitive fingertips, pealing tongue, sensitive mouth, white hair, weight loss, yellow skin, highlighter yellow pee...all of the side effects i am experiencing are the price i have to pay for my "mi...

Cancer - like being naked in public
2007-12-02 03:49:00
an old friend that i pretty much haven't talked to since i was diagnosed wrote me a letter that really struck me. he wanted to "break the ice" again with our friendship, but wasn't sure how. we were the type of friends that could go months without talking, but then hang out like we had just seen each other the day before...like no time had passed. we could confide in one another, laugh together about things that few others (if any) would find amusing, or just shoot the shit over drinks. yes it is possible for a guy and a girl to be friends and thats it.anyhoo, I miss him along with several other people and his letter really got me thinking and evaluating my seemingly instinctual actions. why do i feel so embarrassed about my cancer? why do i feel the need to retreat from my friends vs. embracing their offers of support? rationally speaking, it is completely ridiculous...there is nothing to be ashamed about, nothing to be embarrassed about...i can't help what has happened to me, y...
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FMLA - Not long enough to cure cancer
2007-12-01 23:36:00
my company honors the FMLA...120 days paid leave. after that you have to apply for LTD which is one of our benefits as well...you have to be approved by the company that provides the LTD however. w00t! I was approved today and will start receiving 60% of my current salary at the end of Jan. too bad that my last regular paycheck is in Dec...i won't have a paycheck for approx. 5 weeks. it could be worse, my case was actually approved within 2 weeks for LTD...i was told that it can take 2 months. My company will keep me on disability for 2 years and during that time will continue to keep me on their insurance for the rate i was paying as a regular employee. After the 2 years, i must apply for SS and take over the full payment of my insurance. IM JUST HOPING TO MAKE IT 2 YEARS!!! I hafta admit that the best thing about FMLA is if you go back to work for 3 (or 4 i dont remember) months, the whole thing resets and you can go back on FMLA if you need to (and thus back to your full salary)...
More About: Cancer , Long , Cure

Hospital vacation #2 - thank u sir, may i have another?!
2007-12-01 21:51:00
my first hospital visit lasted 3 days and cost $21k. i felt completely fine for that visit, i was in for all of the tests that lead to my diagnosis...my second hospital visit was not quite as comfortable. this time i was in for 5 days and it cost $20k... the reason for my second visit...well, i had been on sutent for 10 days. i had also been receiving radiation treatments for the spots on my spine for 6 days. on the 7th day, i developed a fever. it was the worst fever i have ever had. over 103° constantly...the fucker wouldn't break. i was taking the maximum dose of fever reducers and they would break the fever for maybe 30 minutes of relief, then it was back to chills and an extreme headache like i have never felt. at one point i had a flanel sheet, a blanket, a down comforter and a thicker winter blanket on me and i was Still shivering...teeth chattering and all. on the 3rd day of the fever we called dr. dooms office and they told me to come in. i actually felt slightly better a...
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