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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Hi Lon... I too have wondered if some of it is from the meds, especially the vomiting, that only happens during the night, always around 3a.m...  ...and I thought maybe I wasn't really running a fever but that I was just getting hot under the blankets, so I started taking my temp, it's been from 101.8-104.2, it was highest at 3a, when I woke up and it didn't start going down until around 11a, I can't get it below 101.8 the last couple of days, it's 104 at night and that takes tons of fever reducer and a tepid bath to achieve...  ...and Lon, I know you aren't comparing your illness to mine, you are one of the most selfless people I know!  But to be honest with you, AS has been way harder and much more painful than this... yes, the pain is bone deep...long bones are hurting more frequently now, especially when my fever is high, like they are on fire...thank you so much for the prayers...  Love, Michelle  P.S. Primary: It's the 'original tumor location' or where it 'began', i.e.; if a patient has Lymphoma and it spreads to the brain, the lymph nodes would be the primary(or where it started) and the brain would be the secondary(the place spread to) but let's say hypothetically they tested the brain cancer and found out that it wasn't an extension of the Lymphoma, it was another type of cancer, that would make it a cancer that originated there, so it would be a primary also... and they would say the patient has two(2) primarys...  But with me, they don't know exactly what is going on with my bones, they did put that in the mix as a possibility as to what is going on there but they sound pretty certain that it is an entirely separate issue...
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF  
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
I went to my surgery clinic appt. yesterday and they finally told me where I'm having my surgery...it will be up in Shreveport, I was really hoping it would be here in New Orleans but I'm glad it's getting done(I can't wait for it to be over! )...I will check in the hospital Monday night(happy about that), and it is a new facility...they explained the surgery to me...the cancer that I have(adenocarcinoma) stays self-contained in a very high number of patients(app. 95% of the cases), however, in addition to it being in the esophagus, I also have a mass about the size of a lemon in my throat and a couple of the lymph nodes they biopsied(sp?) from around the neck and under my left clavicle are positive also...the good news is that there's a good chance that they can get rid of it!... I was thrilled to hear that...  The jawbone...they have no idea what is going on there yet, or even if it's limited to just the jawbone... ...they said they'll know more after the PET scan and that they have a lot more tests to run... I'll just be glad when all of this is behind me, or at least the surgery part(for now), my weight is 123.4, my temp was 100.6 today, so that's good, the mediation was successful... Thanks for everything my KA family, I'd be lost without yall, big hugs & much love...  Michelle
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2008
Posts: 1,970
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Nov 2008
Posts: 1,970 |
Hi Michelle, Things sound pretty positive as far as the surgery goes. At least they will be able to get rid of it all at once. I guess this dark cloud has a silver lining. Every thing will happen so fast now, so you won't have a lot of time to worry. You will get through this in no time. Sending much support your way and hoping you have a speedy recovery Michelle.
I can not defeat you but I will not let you win
Jeff
Degenrative disc disease 2005
AS 2008 HLA-B27-
Fibromyalgia 2010
Disability 2012
Back to work part time 2013
Enbrel, Cymbalta,Oxycodone, blah blah blah blah
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Joined: Feb 2010
Posts: 2,190
Major_AS_Kicker
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Major_AS_Kicker
Joined: Feb 2010
Posts: 2,190 |
I'm glad that the mediation went so well, that has to be a big load lifted off of your shoulders. I am praying that your cancer surgery turns out just as well. It sounds like they know what they are doing.
Donna
Cherish your yesterdays,
Dream your tomorrows,
But live your todays.
Do the very best you can
leave the rest to God.
God Bless,
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Joined: Jan 2004
Posts: 9,848 Likes: 6
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2004
Posts: 9,848 Likes: 6 |
Bravo the mediation - over and done with, and successful. Good news. As for the adenocarcinoma, contained they say, they can scoop the whole lot out then, good - and everything is now set. Many (((HUGS))) and positive thoughts and good wishes flying over to you me dear. Know that we are all in there batting for you. You are one amazing lady May all the powers that be guide the surgeon and his team, and you to full recovery -
MollyC1i - Riding OutAS
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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
Michelle: I hope you have a speedy recovery after your surgery. I will be saying lots of prayers and will be thinking about you and hope they figure out your jawbone issues soon. Happy to hear your mediation was a success . Keep getting lots of rest, eat super healing foods, vitamins and let me know if you need anything. Gentle hugs - Shari
Meds -Hizentra, leflunomide, Prednisone
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Thanks Donna... I've been getting packed up for my hospital stay this morning... I'm not bringing much, I just want to get everything I can think of out of theway this weekend... Big hugs, my friend... Michelle
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Bravo the mediation - over and done with, and successful. Good news. Thanks Molly... As for the adenocarcinoma, contained they say, they can scoop the whole lot out then, good - and everything is now set. Well, the cancer has traveled some from the primary site(the mass in throat is outside of the esophagus and the lymph nodes that tested positive are too) but they still think they can get rid of it with a combination of surgery and chemo...at this point, they decided no radiation... ...TG on that one!! ...I didn't want radiation, at all...  So, the docs feel confident that it has not spread beyond the region but they won't know for sure until the biopsies on the samples they'll take during surgery come back... Okay, so Monday, I'm ready for my Disability Hearing...whirlwind of a week...thanks again, Molly...
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Nov 2007
Posts: 6,269
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2007
Posts: 6,269 |
Awe Shari...thank you so much... You have become such a great addition to our KA family...so glad to have you here!!! Big hugs, friend... Michelle
Age 7- Kidney Necrosis Age 11-Bursitis Age 14-Costo Age 17-Psoriasis Age 32-Thoracic Outlet Syndrome Age 33-Sacroilitis Age 35-Interstitial Cystitis Age 40-AS Age 44-Fibro Age 44-PsA Age 45-MS Age 46-Sjogrens Age 46-Raynauds Age 47-PF
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Joined: Aug 2011
Posts: 501
Veteran_AS_Kicker
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Veteran_AS_Kicker
Joined: Aug 2011
Posts: 501 |
Makaylah & I are sending hugs and kisses - thinking of you often - much love
Gerri & Makaylah
KickAS member since 04/22/06
Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - Celiac/fructose intolerance/malabsorption - many co-morbidities
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