ANA Discussion Forum
Archive => Archives => Topic started by: Karla83401 on May 08, 2006, 10:35:31 pm
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Hi Everyone,
I decided that tonight no matter how exhausted I am that I needed to touch bases with everyone here. I am down to two more finals and then I am done. By the grace of God and pure stubborness I have made it through this semester. It has been a real challenge because it seems that everyday I get more exhausted and am experiencing more pain every day. The way that my head feels I am sure that Tommy the tumor must be the size of a basketball. Is exhaustion a common thing with ANs, is my plate too full or am I a wimp?
I am scheduled to fly out to LA on May 14th. I will have a variety of tests on the 15th and meet with Dr. Brackman and Dr. Schwartz to decide which approach we want to take to deal with Tommy. I must admit that as the time gets closer I start to think that perhaps Tommy and I could live in peace together if he would just stop wanting so darn much room in there.
I am scheduled for surgery on the 16th and hope to fly home th 26th. My sister is coming from Alaska to stay with me until the 24th, at which time she has to return home. Has anyone flown home alone? How did it go? I must admit that this makes me a little nervous but then I am sure that I can do it.
Hope that all is well with everyone here and I am sorry that I have been so hit and miss at getting here. You all have been such as source of strenght for me as I have gotten this far even if I don't say so enough.
Hugs to all,
Karla
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exhaustion was a BIG deal for me .. in the days before my op , simple things would tire me out .. even just a month before the surgery I ordered some mulch for the garden .. (10 yards!) .. after a few weeks they delivered it .. and spilled a little on the drive way .. I got the snow shovel out (*I live the northeast!*) --- after 2 shovels I needed to stop and rest !!!! >:( .. it was at that moment I realized I could not wait for the surgery date to come ... a few weeks away yet.....
I am now about 10 months from the surgery .. working long days and ALL weekend in the garden and fishing again .. (a bit dizzy but working! 8) ) ...
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Yeah, being tired seems to be a big part of the process before and for awhile afterwards. I'm a little over 3 weeks post op but am doing great, but I'm only good for about 4 hours at a time, then I have to rest. My wife says I start to droop and get a little greyish skin color and then she knows I just have to lay down for awhile. But it gets better each day. The first week post op, I couldn't keep my eyes open at all. I'm really glad I had the surgery though, life seems so much brighter now. Good luck and keep us informed about your progress.
Dale
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Karla, YOU ARE NO WHIMP!
It's really the AN. I was so tired before surgery I couldn't barely keep up with life. Not sure where you are getting your strength from to get done with school. I guess we do what we have to do! Here's sending you good toughts, prayers, wishes that all goes well! Please give us a post when you get the chance and let us know how things are!
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Karla
I had that horrible extreme fatigue for about two years before mu surgery. As I remember, the tiredness after the surgery was simply my body getting strength back. Brain surgery is major surgery!ÂÂ
With the BEFORE fatigue I could never feel rested. With the AFTER tiredness I could get rested and then get tired again (but not that awful fatigue). I, too, was going to school ( and teaching) during that time.
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Chris just finished his finals too. I'm glad that is out of the way for now. He also works 8 hours in a grocery store. He has been coming home exhausted but he says it keeps his mind off of the AN . He is having pre-op tests all day tomorrow. Then the surgery will be scheduled. They plan to give him steroids or a shunt to reduce the swelling. He is now staggering when he walks. The doctors told me yesterday that it is often more aggressive in younger people. I think they are right because he claims he could hear at Thanksgiving and now he has a 5+cm tumor. He's upset that he can't drive .I just pray the surgery will be free of complications.
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Karla...been thinking about you a lot and wondered how you were doing! I knew your time to fly to house was coming soon! Good luck to you, I will be sending you all the good thoughts I have!!!!!!! Keep us all updated, and I know you will do just fine! I'm next!!!!!!!!!!
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Good luck with everything Karla!!
I know it's grueling but you'll get through it! What's more, you have some of the best and most experienced doctors in the world working on you!
As far as the fatigue is concerned, yes, it comes with the territory. Just before my surgery I remember taking a bath , getting out, drying off and practically crawling back to bed for another nap.
Paul
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Hi Karla,
You have two good doctors! It is great that your sister is going to be with you. A support system is a must for AN surgery. Just by her being there will make you feel better. I am very concerned about you flying home alone. I was told not to lift anything over 5 or 10 lbs for a month after surgery. How will you get your luggage home? You can probably get help from someone at the airport but please make sure you check out your lifting restrictions before you leave. Before you know it, the worst will be over and you will be on the road to recovery like the rest of us. I wish you the best, you will be in my prayers. Please keep us posted on your progress. Also, if you are staying at Seton Hall, they do have internet access so you can let us know how you are doing! Any questons, please email me. Ann
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Hey Karla,
I hear the mashed potatoes are YUMMY!
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Karla you are in the best of hands and soon Tommy will be history. I am sending you hugs, positive energy and happy thoughts. I will also stop by church on the 16th and light a candle for you.
We love you Karla ;D ;D ;D ;D
Cheryl
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Hi Everyone,
I tell you this site is the best medicine that I have found to help through this AN thing!!
Thank you for all the support and great words. It is such a relief to know that this darn exhaustion is part of the AN process. Sometimes I worry that I am just getting lazy. I am also excited to hear that things should get better on the other side of surgery. I am normally a fairly high energy person with many irons in the fire so this is very frustrating to me to feel like all I want to do is take a nap. Naps just don't work with two teens and a two year old.
Chrissmom, please know that you and Chris are in my prayer and I hope that things go well for you.
Desilu, I am hoping that Delta airlines will help with getting on the plane and off. My luggage should be checked all the way through. My children will all be at the airport when I get home (I am sure that nothing could keep them away) so I will help there. I think that I am most scared about being alone on the plane...will I get sick, will I look weird, will people stare at me? Silly things to worry about but I do.
Okay Batty, how did you know that mashed potatoes are my favorite food! Do you know if there are places to eat around the House and Seton Hall or do they have eating facilities? My sister and I are wondering about that.
Cheryl, thank you so much for lighting a candle for me. As a person of devote faith I know that when we ask the Lord, He listens. Thank you so much.
Gennysmom, how are you doing? When are you looking at surgery? Are you still looking at the House?
After Thursday I will try to write on a regular basis and let you know what is going on....okay I need you guys and your strength right now.
Hugs,
Karla
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Capt Deb told me about the mashed potatoes! From other posts on here I understand the food at seton hall is pretty decent and reasonable. There are many here who have been there so they should chime in and fill you in!
I'm sure Delta will offer you assistance. They were great with me the summer I flew right after I was diagnosed and got sick on the plane. I don't know who was more scared me or the attendant sitting next to me! Just tell them when boarding that you just had your surgery and might need some assistance and they will check on you during the flight and after. If you're like me you hate asking for help, but this time just do it! Think you're in a nike commercial LOL It's better they know ahead of time then down the road what your needs are.
You know you have many prayers coming your way!
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Karla, sending you MAJOR amethyst huggles (for healing) and best wishes this week! We're here for you and have the dirty jokes lined up (ok, batty does, the silly wench!) for post-treatment....
... aren't those nice words? "post-treatment".. really are! Enjoy as you will be a "Postie" this week!
HUGGLES!
Phyl
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Karla
Wishing you the best of luck--you are going to a great place. Everyone at House is wonderful. Call Delta and splaine your situation and they should have a wheelchair to get ya on and off the plane. There is a computer in the common room with internet service to keep in touch.
The dining hall at St Vincents is great--worlds best mashed potatos--and cheap. Seton has cooking facilities in the room if I remember (there is a fridge I know--might have to use the community room to cook.) There should be a bodega in the neighborhood for a few groceries.
Kiss all the nursies for me and tell 'em Jungle Girl says "hi!"
Captain Deb
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There are some good Mexican take out places near Seton Hall too that I really enjoyed ..(there are no good Mexican places in to Northeast) .. plus I second the surprisely good food at the Hospital Cafe !
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There are some good Mexican take out places near Seton Hall too that I really enjoyed ..(there are no good Mexican places in to Northeast) .. plus I second the surprisely good food at the Hospital Cafe !
Geeze, when was the last time you were at Border Cafe here in town, eh? :)
Karla, nothing like Mexican food out in S. CA, but yes, we do have good food here in the NE as well! ;)
Phyl
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Karla wants mashed potatoes!
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All this talk of mashed taters inspired me ta make some garlic parmesan mashed taters for dinner! Yum yum eat 'em up! I heard the ones at House help ya heal faster!!!
Capt Deb
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Karla, I just wanted to say good luck. I lived in Pocatello for a while and am now back home in Billings, Montana. I adopted a pound puppy from I.F. last year- 2 weeks before I found out I had a tumor. I am just heading into my 1 year anniversary (May24, 2005) of tumor removal. (2cm) I had Dr. Brackmann and it went great. I can't tell you not to worry (yeah right-not worry when there's something growng in your brain) but you've got one of the best places to go and one of the best Doctors around. I was in, out and heading to the LaBrea Tar Pits withing 6 days of surgery. Everyone is great, Seton Hall is nice and this time of year the roses and trees are beautiful
I know that Billings is a little distance from I.F. but if you need anything-talking,questions, I'm just over the mountains and through the woods.....
Thinking of you! Mary
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I tell you after reading all this talk about food and great things around the House I almost feel like I am going on a vacation. I am sorry that I have not responded earlier but life just seems to get in the way of my doing the things that mean the most. Finals are done and I did wonderful in spite of all of my stressing. Stress took its ugly toll on me by causing my asthma to flare up to the point that talking was out of the question and breathing was questionable. But my local doctor got on the phone with Dr. Freidman at the House and they decided to hit me with massive systemic steroids. Of course I could not take them orally, no we needed to inject the full dose. Oh well it was in my behind and like I told the nurse "that is a good thing because she could not miss that way" . I am feeling stronger although rather wound up. I am also taking inhaled steroid in hopes that things will settle down. The House said they would just make sure to protet my airway during and after surgery.
I am still leaving on Sunday, with tests scheduled for Monday and surgery Tuesday. I will write again as soon as I can. I am hoping that surgery will eventually help with the exhaustion and headaches.
Hugs and love to all,
Karla
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Karla sending lots of prayers your way!
Just know you are loved and cherished and we're here for you!
Don't forget to take your leopard print jammies, then they'll know you know Capt Deb!
Enjoy the mashed potatoes!
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Dear Karla:
I am one of the new ones on the site. I wanted to say hi and good luck. I remember the days leading up to surgery as the most exausting days of my life. When surgery was over it was the biggest relief of my life. I wish for you a relaxing recovery. It sounds like your life is very busy so do what the drs. tell you and take it easy. I was so worried about getting a CF leak I bought milk in quarts so I didn't have to lift the heavy gallons.ÂÂ
Hugs from Minnesota, Kathy