August 2010...anyone starting chemo besides me?!
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Good afternoon Ladies, I just had to pipe in about onc. I didn't like the 1st one I was sent to he rubbed me the wrong way and he question things the surgeon had told me, and I thought the surgeon was awesome. I asked people I knew that work in the medical field and other who have had breast cancer, with this I was lead to the awesome onc. a lady 40ish that only does bc. She takes her time and is very patient. She gave me 3 options and let me deside what I thought was best and she did tell me if I was her friend she would suggest the most aggressive treatment. I'm having TCH, is this the same chemo as your TC??? Herception is not chemo. I do think you should have options so you can make the best choice for you. Also down the road you don't blame the Dr. if it comes back if they decided not to do everything. I would have went with the most aggressive treatment because that is me same reason I had bimx.
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IowaSue - I saw two oncologists, one suggested AC followed by Taxol/herceptin and the other the same TCH as you. I went with TCH. What were your other two choices I am very curious?
I think the T and C are confusing because sometimes T=taxotere and sometimes T=taxol, C=cytoxan or C=carboplatin (though sometimes I see carboplatin as Cb).
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JSW: Happy Birthday, mine was last Thurs.so power to us balanced but extravagant Librans. My DH took me to Palm Springs for my B.D. and we had a great time mostly forgetting about breast cancer and all the fun things associated with it. Hope you do the same.
Tomorrow I go for the Full Monte treatment that I haven't had since Aug.25th. I had the 3 consecutive weeks of TC and the side effects were barely noticeable. Took my roids this A.M. and trying to get things done before treatment. By the way, my family and I participated in The Walk For The Cure on Sunday. A truely fabulous experience, very uplifting and most of all for a cause very dear to us all. One small embarassment, my daughter-in-law, God love her, arranged for me to be called out in the front of the line and had the emcee tell all it was my Birthday and have all [thousands] say HAPPY BIRTHDAY MONGA. By the way I was the only one that I saw that was bald under my really cute hot pink hat. Happy trails to all, yap at you later
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Hi All, I haven't posted in a while, but have been reading with great interest. I had round 4 yesterday, Taxotere, Carboplatin and Herceptin yesterday, and Neulasta shot this a.m. I had a really good week last week, but the weather here has become somewhat cool and it allows me to get out and move around, unlike that frighful heat here all summer. It sounds good to say only 2 more rounds. I was talking to my Onc about when I could have reconstruction, and it says it is all dependent upon blood counts and physical well being. He says 4 - 6 week after last chemo is usual protocol. Has anyone else discussed this with doctors? I knew it would be unlikely that I could crowd this procedure into this calendar year, but did want to due to practical circumstances, like not having to meet new deductibles, etc. Too, I'm not sure how I could fit it in my work schedule, because I too work for a large corporation who are holding to their policy regarding medical leave to the hour. I just want to get all this done and over with. Starting out I really didn't think I could do it, and as difficult as it is, I am ready for this treatment part to be over with. Any thoughts or plans out there?
Last night, after treatment, much to my amazement I went to a "Breast Cancer Friends" meeting at the invitation of my cousin's wife. She is a 10+ year survivor. There were over 40 women there, most past treatment, but many dealing with their disease now. It was so inspiring to see that many people who had done it and were willing to share their experiences and strength. It was not a typical meeting. We had a great meal, and entertainment and a really cute game. It was good to laugh and be silly. They said most meetings were more a discussion forum, but the Church which houses the meeting gave the dinner for Breast Care Awareness month. I enjoyed it so much. You might look into such meetings in your areas. I was glad I dragged my tired old butt out for an evening with a bunch of strangers........
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Yesterday I went for my bloodwork. I requested that the nurse wrap my hand in a heat pack - I've HAD it with them them drawing it from my port. It hurts like h*ll every time they use that spray AND poke the needle in.
Well, sure enough, she wrapped my hand for a few minutes and got a vein in one second with NO pain.So I'm relieved---I was scared that the two rounds of AC I had might ruin my veins since they had so much difficulty getting an IV started when I went in for my port surgery after those two rounds. But it was a piece of cake.
I will be looking to get this puppy out as soon as possible after chemo (even though it's not terribly bothersome anymore - it still freaks me out that it's there). I imagine they will want to wait a month or two though so that the incision to remove it heals well. Talked to my naturopath today and he said that a patient of his had a bad time with wound healing when her port was removed and that it's good to wait a while after chemo.
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Hi,
Happy Birthday JSW and onemonga!!!
Texas Is there a neighbor who can help with the kids in case you're not up to the walk or the weather's bad? I'm not sure how far you have to livefrom the school for busing, but maybe the school would be willing to set upsomething temporarily because of your situation if there are kids already being bused in the area?
I got my first Taxol/Herceptin Friday. I was expecting it to be easier than AC but it really knocked me for a loop. I've been having alot of intestinal cramping/spasms and gas (sorry if tmi) as well as leg/back pain but that's seems to have stopped today. The nurse told me diarrhea is one of the side effects of herceptin and suggested immodium, but I'd been having problems with constipation so I was trying to wait it out. Today I almost had an accident away from home so I started it. Still having these spasms though which make it hard to sleep. Anyone else getting herceptin and having this. I'm hoping I don't get it with every treatment.
Carolyn
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Happy Birthdays to the B-day girls!
Just think - NEXT year's birthday you'll look back at this year's and it will be all done! We spent the day cleaning the house which was a total disaster - seriously, the rugs were horrible! The kids room looked like a bomb hit it and we had nothing but a "walkway" in the family room because of the accumulation of "stuff". Between the garage sale Sunday and just being sick and all the chemo, it was very neglected. My kids helped and I powered through the whole thing - I'm wiped out, but it feels good! Catching up on the laundry now! Hoping tomorrow to do a bunch of paperwork things I haven't felt clear headed enough to do ==hope everyone has a great night!
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Omaz- The 1st option was to do nothing else, because I should have been cancer free after mx. with all the risks of it coming back, there was no way I'd have pick this with the risks of it returning especially her2 poss. and grade 3
2nd was chemo lite, I didn't want this so I don't even remember what chemo lite was.
3rd was TCH taxotere and carboplatin and 1 year herceptin
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Happy Bday Jsw.
I'm back in the hospital; kept running fever and at my onc appt yesterday, he wanted to readmit me for more tests and different drugs. Plus we got a new infectious disease doc. I did not like the first one at all. Everybody kept telling me how brilliant he is, and I said "that's great, but that doesn't help me when he's not communicating with me." No fever today, so hopefully, the new meds are working.
Wherria: Just wanted to say that I think my onc walks on water, I think I have a little crush on him. But seriously he is like the top dog onc around here and he is great. He goes to bat for me (like getting me a new ID doc), and when I've questioned him on treatment, he has discussed it with me and not acted at all like he was put out that I questioned him. He and I went round and round about Taxol v. Taxotere. I'm saying all this to say, you've got to feel comfortable with your doc and if your doc is copping an attitude, I say kick her to the curb. There are about 50 oncs here at the center where I'm being treated and if I didn't love my doc, believe me, I'd be checking out one of the others. All they've got to do is read the chart and catch up. I'm not saying she's wrong about 4tx vs 6tx, but she's got to discuss it with you and explain it so that you feel comfortable. just my opinion for what it's worth.
Hang in there ladies. I'll let you know what happens with me.
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Taxotere sucks---I am day 5 post chemo #4 and joint/bone pain and just ZERO energy. Could barely drive to grocery store and walk around before coming home and resting for an hour? I did hear that it would be hard but..kept hoping that I would escape the worst---yeah right! Have bloodwork this coming Friday to see how WBC/RBC are holding up.
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Finally caught up on all the reading. Been busy between work and college classes. I hope everyone is feeling better from their colds and coping with the SE's. Im finally feeling more normal now that the AC is completed.
Taxol... I had it for 16 wks, every week and the bone pain was awful at times. It kind of reminded me of when I was younger (you know like 8 or 10 young), and I would get pains in my legs, and my mother always told me they were growing pains. My dr's gave me Tylenol 3's and then percocets.
I go on Thursday for my consult with the rad onc. I am hoping that they give me the right answers and pray for no radiation. But I know that my onc has told me already that they are recommending I have it, because of my ONE lymph node. I have a MUGA after that appt cause of some heart flutters and then it speeds up afterwards. Worried that the AC caused some heart issues.
I get my first Herceptin on Monday, Oct. 25th, unless there was a drop in the results on my MUGA. Then they may make me wait till the results get better.
Hope everyone was a wonderful week with no SE's. Hugs.
Kim
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Calamity- I've only lived in this town for 4 months, 3 of them I've been dealing with cancer so havent had the chance to meet too many people enough to trust them with my kids
Love your muslim/turban story!!!kimmie- whats MUGA?
About the port- i asked my dr when i can get mine removed (i am sick of my 2 yr old bumping it!) and he said generlly they like to keep it in for a year after tx just in case for "normal" bc patients. People with stage 4 (ME) they keep it in indefinatly.... Just because its more of a matter of when not if on needing it again! Def ask your oncologist i am with ya on getting it out ASAP!
lizzy- Do you work for walmart???? or target???? lol dont leave me hangin!
HAPPY BIRTHDAY JSW19- heres too many more!!!! Sorry to hear about your cat and hubby's grandfather. That has to be a hard decision, damn this cancer!
Onemonga- that sounded awesome! I dont get the colors for the walks- do we only wear pink if we're "survivors" or do we wear pink when we are flighting cancer? i just realised at my fundraiser they made me a white shirt and they were wearing pink.... just a thought
Deb- good hearing from you! I am not sure about the recon part of your question, but i am glad you got to spend some positive time with some fellow BC warriors!
Carolyn- herceptin does give me diareha too- its weird cuz with the compazine the first few days i am constipated then when i stop taking it its goes to antoher extreme, my oncologist suggested immodium too although i never take it because i am just DONE with all these freakin drugs! it lasts maybe 2 or 3 days after it starts then i am fine- and the twithces, also get those LOL the only one that bothers me is in my eye like a crazy twitch lol the others just come and go i am pretty good at ignoring them! is taxol the same as taxotere? or is that different? I will say the worse of the SE have lessened for me after the 2nd treatment- one it me hard, 2 harder, 3 not as bad but super nauseous (but you remember the stress i had with my crazy sister in law) and i am 5 days out from my 4th TX and mostly normal lol
Also i dont trust my 5 yr old on the bus because the high schoolers ride the same bus... i totally dont mind walking, i am gaining too much weight lol roughly 20 pounds, its those damned boost shakes LOL my oncologist said exercise would be good (i think he was hinting that i am gaining too much LOL)
LadyinBama- AGAIN! well hopefully you are in and out this time!
New with me- my nails feel wierd- i heard they could fall off but they feel tingly and the "moons" look sorta rainbowed- lol well just pink and red stacked like i can see each tx in my nails lol i def am gonna ask my dr about this on the 28th when i have my next appointment!
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LadyinBama, I'm so sorry to hear you're back in the hospital. I hope you're comfortable and get out of there soooooon!!
Happy B-day to the B-day girls!
Rachel- the fatigue is something else with Taxotere. I had a hard time sometimes even getting up the stairs, but by day 7/8 I always felt better. I hope this is true for you too.
I got a tattoo today!! Actually I got six of them. Small black dots all over my chest for radiation. It hurt!! I won't ever get a real tattoo. But these ones are real alright, they kind of look like moles or weird freckles. Radiation starts Nov 1st.
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Sweeny- is fatigue with taxotere? i always associated it with my compazine because about day 3/4 i felt less tired which is also the time i stopped taking the comp...
Yeah for a start date!!!!!!!!
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Hey Tex- CRAZY fatigue, for me anyway. Many times I felt like I needed to just lie down wherever I was. Grocery store, School pick ups, park time....whatever it was it was like I could lay down and fall asleep right there. So maybe not your compazine? You're on taxotere too right?0
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Hi everyone. Happy birthday (belated) JSW, and I'm sorry about your kitty and your husband's grandfather. BC sure brings some tough decisions with it.
Lady, I'm sorry you're in the hospital again. Hoping you get to go home today.
Today I have an appointment with another oncologist, one that I saw in the very beginning for a second opinion. I liked him then, and he seemed open to giving me choices about my treatment. He was what you'd call warm and fuzzy, but it was a short appointment, and after all, I need cancer treatment not a best friend!
I'll let y'all know how it goes.
Great day to everybody!
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Tiredness - -with taxotere do you take decadron?
I was warned on taxol, about the steroid crash. For me it didnt' happen for many days - while I was in pain on days 3-5, the "crash" didn't come until day six when I was finally able to sleep......
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Good Morning All!
Lady: Sorry to hear you are in the hospital again, hope you get out soon!
JSW: Happy Belated Birthday! Glad to hear you had a little trip to forget about the Big C for a little while.
Sweeney: I go for my tattoos today! Didn't even think about the fact that they might hurt...oh well I am a big girl, I can handle it, LOL! I start radiation on November 2!
I still haven't decided about radiating the axilla, have been going back and forth in my head. I guess I will make a decision this afternoon when I am forced too and after I ask the radiation oncologist a few more questions.
Calam: Good luck with the new oncologist, hopefully he gives you the answers you need to feel more comfortable about whatever treatment you decide on.
As for the nails (I think it was Sweeney who noted nail problems). I too, have developed red moons in my nails and they are tender to the touch. The oncologist said it is definitely from the Taxotere, and should fade over the next month or two. He said I could lose them, but that is rare. I work on a computer all day and he advised me to keep my nails short, so they are not pounding on the keyboard all day, as he said that could exacerbate the problem. Really worried about my right big toe nail, it is turning black at the bottom...maybe I will lose that one, yuck!! Oh well, as my oncologist said yesterday, "Chemo....the gift that keeps on giving!". (Remember I am now almost three weeks done with chemo and thought mistakingly that the side effects were all done!).
For everyone getting treatments this week, hope they go smooth and the side effects are minimal!
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Sweeney: About the nails.. I started having nail pain soon after my 4th tx of TC. Sorry to say, it has only gotten worse. I can't put any pressure on them at all with out a lot of pain. At first, my onc just said to bear it out, but to watch for signs of infection, and they came -- red and swollen around the cuticles, and patches of yellow under the nails. At the time they were mostly just darker red (not too dark though), with some white specks and ridges in some places. But as the pain got worse, so did the discoloration. Also they started turning concave, which can happen on taxotere (and probably taxol) with or without them falling out. Now they are very bumpy and yellowish, though still red in some places. Bottom line, they are infected. So I'm on heavy duty antibiotics. Plus, I have lymphedema in my left arm, and the infection in my nails has cause a major flare-up of that. My left arm is about a third bigger than my left arm and very sore. All from my fingernails. I'm telling you all this not to scare you or bum you out, but to stress how important it is that you keep a close eye on them, and report to your onc and of those signs of infection. Like any other infection during chemo, it can get bad quickly. My onc's nurse told me they may or may not fall off, but that if I have two more treatments she said they probably will fall off. Fortunately, my nails aren't growing so I don't have to clip them, because that would hurt more than I can imagine. Be careful. Also, I found out that this tends to happen at the end of treatment or even after it's over.
Good luck.
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Big hug to you wherria!!0
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Thanks gals for all of the birthday wishes and happy belated birthday to you onemonga! I had a nice day and I am hoping this next year will have less drama than the last.
Wherria Glad to hear you have an appt to see another onc. Let us know how it goes!
LadyinBama So sorry to hear you are back in the hospital! Hopefully your new doctor will figure out what is going on and you'll be back home soon!
Texas You are such a trooper, you crack me up! Good for you for making the walk to school to pick up your child. I am impressed by how much energy you always seem to have. Also, to answer your question, a MUGA is a heart scan. I forget what it stands for but they inject some radioactive stuff into your blood and then take images of your heart to see how well it is pumping. They get a number from it that is your "ejection fraction" (a percentage) and if it gets too low then they will hold off on the Herceptin until it improves. I had one a couple months ago before starting treatment and I'll get another one after my AC is done before starting Herceptin since AC and Herceptin can both cause heart problems. Usually they give them every few months to women on Herceptin. Oh, and on the shirt colors I think you can wear pink even when you are fighting cancer because you are surviving the fight. I presume you are referring to the Komen walk shirt colors. My aunt signed me up for the Komen walk that she did even though I couldn't be there to do the walk and she signed me up as a survivor so they sent me both the regular white shirt and the pink shirt that says "survivor" on it. To be honest, I feel a little superstitious about the survivor one and I don't want to wear it until I am actually done with chemo and rads. I feel like I won't officially be a survivor until treatment is done and I am cleared by my onc. It is kind of like the question I have seen on these boards before - when is your cancer-versary? Some women mark it by their diagnosis date or surgery date but I want to mark it by my end of treatment date. That is when I will really feel like I have beaten BC and that is the day that I want to celebrate each year, the day that I finished treatment.
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Sweeny- yeah i am on taxotere... how long does that fatigue last for you? how often do you get the txs?
Wherria Good luck with the appointment today
Thanks for sharing about the nails! i have a bad habit of biting them or just sticking them in my outh which as you know mouths are disgusiting. I will STOP that starting NOW! i dont want any more pain than i already have or an infection either!Calamity- Decadron??? Is that a steroid? i take dexamethason (2 day before 2 day of and 2 day after tx)
Sptmm62- I love your oncologists sense of humor... so about a month or so for the SE to fade away....hmmm.... You had positive nodes, dont they automatically do radiation to the auxilla (thats the underarm right?) lol
jsw19- Oh i had an echo cardio gram done not a MUGA... they didnt have to inject anything they actually did it after i woke up from my port surgery! I havent put thought into my cancversary lol i def wouldnt want to have it for the dx date because why celebrate THAT day! I think i like marking the day i was DONE with treatments! Thats a more positive versary than a bad news one...
LOOK FOR THE BLESSINGS EACH DAY!:
Sometimes this is hard just because what we're going through but i just want to share so many positives that have happened in my life recently. My husbands in law enforcement and a lot of apartments let you live rent free if you patrol the complex and such (i think they said put in 18 hrs a week) Well anyhow we got a call that an apartment was looking for one, ben went over and picked up an application- i filled it out and went to turn it in but they were closed
i came back today and the manager was so nice- she said something along the lines she was worried that he wasnt gonna turn it in- which i take as a good sign that they are intrested in us!!!! BTW its a 3 bedroom we are so cramped in our tiny apartment. They have nicer grounds and a playground (our current complex doesnt) It def would be a step up!My husband made the tactical (SWAT) team with his department, and they went onto a 4 10s schedule at work so he has 3 days off!!! It actually feels like a mini vacation when he has time off...
Also i started writing a journal, well more like a love letter to my children. Not that i feel i am dying or anything morbid, but i think it would be neat for US together to look at it 20 years from now and say oh yeah i remember that time...
The weather is so faboulous lol i took my son to the park this morning and therer was dew on everything!!!! About time! its been so dry and hot even when we wake up, but it was nice getting out with him!!!!
HAVE A BLESSED DAY Y'ALL!!!!!!
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Texas - I'm rooting for you to get that apartment - how cool that would be!0
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Good day chemosabes!
Bills: Got a bill from the hospital for my portion of the $31000 tx!!! $3000!!!!! Unbelievable!
Kel: Corporations do suck and are very short-sited. That is awful labout your husband with Kraft. I would say the company but at this juncture I am still employed. I will reveal the name soon enough! You are right, I won't have bc forever but I really don't want to work for a company that will s-can you b/c of something that is not forever. I am going to be on long term disability now which is helpful and my benefits are still in place. In the end, I want to align myself with a company that stands by it's employees. Can you imagine how stunned I was when a regional director from ACS told me what a bad reputation for mistreatment of cancer patients my company has?!?!? I thought they just did not like me!!!!!! Glad your tag sale was a big success. I hope you are feeling better since that Levaquin/Taxotere monsoon of last week!
Texas: that is so incredibly clever that the apartment complex is smart enough to barter for security. That is excellent for you and them. I hope you get it. I have family and friends in law enforcement and actually a friend works detail for Obama so, more to this point, I know the SWAT team is not easy to make so congratulations to your husband as well. Journaling is a great way to detail each day with your kids. It is a great, great idea. Even I journal my chemo experience. I can't remember day to day what is going on never mind 20 years from now! That is a great idea.
Ladyinbama: I am so sorry to hear you are back in the hospital. I hope you are home again soon and you and your husband go take a walk by the shore and go out for a romantic dinner. I wish you the best.
Sweeney: I, too, feel like I can lay down and sleep most anywhere. The fatigue, they warned me with TAC, is bad and cumulative. I figure by tx 6 I will become like my cat sleeping 23 hours a day!
Tattoos: I would never get a real one either but, because of the no-blood pressure/blood draw on the left since they removed so many nodes, I have been considering getting one on my left arm b/c forbid I am in a car accident and rushed into the hospital. In an emergency situation they are not going to read our medical file and certainly, if I am traveling, there is no way anyone would know. I am honestly thinking of getting a pink bc ribbon with no blood pressure/no blood draws this arm...I know it sounds extreme but better safe than sorry.
JSW and Onemonga: happy, happy, happy birthday....belated that is!
2 oncologists: I saw 2...the first wanted to put me on TCH...WHAAAAAT? TCH is not even appropriate for my type of cancer. What a buffoon! My current onc is borderline brilliant. You can just feel it when you are in the wake of a great mind. I respect him and I know he is doing right by me. Wherria: go elsewhere if you are not getting what you need from your current.
I hope everyone is having a good day. I know we are a little tired and beat up but some day we will all feel good again
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Texas - I love your attitude!!!
Re Taxotere: I have amazing fatigue, too. It usually starts on day 3 or 4 and lasts through at least day 7. The kind of fatigue where I don't want to get off the couch to go to the bathroom! Luckily, no nail problems yet.
Also, I just started having really watery eyes. Mostly in one eye, which is somewhat red too. It doesn't seem like pink eye because it isn't crusty or thick or anything, just constantly watering. Does anyone else on Taxotere have that? I see the onc tomorrow for Herceptin, so I will ask then, too, but I was just wondering if anyone else had it.
Radiation - I just met with the radiation oncologist for the first time today. I have my set-up and tatoo appointment set for November 23, and then I will start in early/mid December. I can't tell you how excited I am, because that means that the chemo is getting close to being done! Next week is no. 5 out of 6. I feel like the end is in sight.
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Lisa - watery eyes appears to be due to taxotere. I just met a lady at the onc office who was just out from TCH #5 and the outer edges of her eyes toward the outside, not the nose side, were red and she said they water a lot. Mine watered a few days after #2 and now after #3 as well.0
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Texas, That apartment sounds like an awesome deal, I really hope you guys get it. I think you asked if Taxotere was the same as Taxol; they're the same type of drug "taxanes" so they are similar but I'm really not sure how they choose one over the other. I know both have fatigue as a s/e. BTW I called the onc today and they think the diarrhea is from the Taxol; said it doesn't happen with herceptin but I thought I saw it as a s/e of the herceptin. The journal is a great idea, I brought some for my kids last year but have hardly written in them so you've inspired me. This stuff is wreaking havoc on my brain so I might forget all the adorable things they say:-)
Lizzy, Glad you finally got to LGFB! That's awful about the garage, I can't believe the way they speak to patients that way. As if going to the appt isn't stress enough. Wouldn't getting a tattoo on your affected arm involve needles too?
Carolyn
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RE: watery eyes - I only got a half dose of taxol last week and my eyes have been watery all week. The left more that the right. Right eye is red. I am not looking forward to a full dose of taxotere this Friday!
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zenith - sometimes eye drops are supposed to help - I think the eye is actually dry and that is why it waters. I used some drops today and it seems to have helped, just the artificial tears type.0
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CKP: I never got a tattoo so I never thought about it! Needles once, on the skin, might be better than a catastrophic accident where they are blood pressuring and IV'ing a bad arm though?! As for Yale, they don't have a single parking garage of their own. They are all run by the city of New Haven which is run largely by neanderthals. They live off of their host, Yale and therefore, and like other city municipalities, they have not had to get creative about income because they live off of Yale. It is a mess and the NHPA is uncouth. If Yale wants to charge $31,000 for a chemo tx, they better figure some freakin solution on that damn parking mess where I am concerned or I will spend my $93,000 at another hospital. My boyfriend wants to take me back and forth for the final 3 txs anyway but I still wrote a letter to the President of Yale about the parking travesty. Surely all I will get back is some form letter apologizing and also exonerating themselves of any responsibility because they don't run the garage. The Yale students are mugged, raped, stabbed, cars stolen, and on some occassions, killed all b/c New Haven and Yale COMBINED can't keep them safe. It is all graft and corruption. Yale, however, is an excellent hospital. The whole situation with New Haven is a shame and, honestly, if I had kids going Ivy, Dartmouth, Colgate and a bunch of others would be much higher on my list than Harvard, Columbia or Yale as they are all located in cesspools.0
