Kickas.org
Posted By: Michelle70605 At a total loss... - 03/28/12 08:02 AM
Hi Yall,...I've been having the strangest couple of weeks, medically speaking and was hoping yall could help me sort through some things out and maybe help me to understand a couple of things better...basically, I decided to go to the dentist and have my annual cleaning & x-rays before my surgery, well, my dentist saw some serious bone loss on my x-rays, after he came in the room and looked at my x-rays, he came over and examined my mouth inside and out for about 5 minutes, then he told me about the bone loss issue, to show me, he compared the x-rays from last year to the new ones and drew lines where the gum is and and another line where the bone is/was/should be, but you can plainly see it, across the whole lower jaw, I've lost a visible 1/3 inch of bone in one year, across the board, so he referred me to a specialist but never told me what he thought it was or what he thought had caused it, then the next day, I went for my pre-op labs & chest x-rays and got a little bad news there, I have to stop my Enbrel & Methotrexate (effective immediately), I have to be off it for 4 weeks before surgery and 4 weeks after...and I've been flaring for about a week already, so I'm not looking forward to that at all... no next stop, my PCP, this afternoon, for a kidney infection and corti-costeroid(sp?) shots in the bursa sacs of the hips...well, I've been flaring and it's 85 degrees out already, so I've been wearing loose clothing the last couple of weeks, I've been in bed most of the time, so today, getting dressed for my doctor appt., I get out a pair of skinny jeans and a tee-shirt that I know I've worn in the last month or so and they felt really baggy but I was running a little late already and I'm really hurting bad in my hips, I can hardly walk, Mike asked our son, Brandon, to bring me to my appt. and he was waiting, so I didn't really look in the mirror, I just knew they were big on me... I get to the doctor's office, they call me to the back, I step on the scale and I've lost 20 pounds!!! shocked , in a little over 2 weeks, I was just there 2 and a half weeks ago, so I go to the back and the Doc asks me a barrage of questions, I was back there so long that Brandon came back there to see if his Mom was okay... heart Anyway, I answer his questions, basically: yes, I've been having night sweats lately, a couple times a week, severe bone pain from head to toe, the normal extreme flare (pain level of 14 on a scale of 1-10) but somehow it feels a little different, I can't explain it but it's just different, it's got a 'bone on fire' feeling, low-grade fever, no appetite...so I tell him all of that, he looks at my dental x-rays(I had em in my purse)...so to shorten this up, he said, "I don't want to alarm you but this is NOT good, I want you to prepare yourself,....(I don't remember what he said here but he said something else)....and I think it's time to go to a higher level narcotic for pain management and I will be following all the reports (everything is sent to him by all of my specialists) and you call me if you need aaannnyyytthhiiinnngg!"....it's just that I've been getting the 'kid gloves' treatment everywhere I go lately eyes and that is worrying me a little bit...I'm still mulling all this over, trying to really think but I don't know...it seems like a lot, only 2 things really got my attention, the dental x-ray and I was really shocked that I'd lost 20 pounds, I knew I'd lost a little but I thought it was about 7 pounds but I'm tall, I'm 5'8" and with the weight loss, I now weigh 125, I just haven't had an appetite lately but I've been making myself a eat a little something here and there but I do that when I'm flaring, which these last few years has been about 90% of the time but I don't usually drop more than 5-7 pounds...this is nuts, I hope I don't lose anymore... ohwell Well yall that's it...sorry for such a long post and thanks for letting me get this off my chest!! heart ...any thoughts or advice on all of this will be so appreciated!!! rainbow
Posted By: Gerri54 Re: At a loss... - 03/28/12 09:48 AM
Michelle, I am sorry you going through even more - know I am alway here for you.

Hugs, Kisses and much love

Gerri & Makaylah
Posted By: inkyfingers Re: At a total loss... - 03/28/12 10:20 AM
Well darn it Michelle - sometimes life just doesn't seem fair, does it!!! hugss

At least it sounds as if your doc has your welfare foremost in his mind and he will work overtime to try to find some relief and hopefully answers for you ASAP!

It's scary when they think something's going on but they can't quite join the dots yet, so you are left in the dark at the edge of the precipice! eek2

Take care of yourself in any way you can - I'm sorry there's nothing concrete we can do for you except "listen" and understand that you're not in a good place. hugss again to you, my friend....
Posted By: Langers Re: At a total loss... - 03/28/12 10:29 AM
So sorry to hear that you are going through such a bad time at the moment. It sounds like you are in good hands with your doctor. Sending you warm wishes and positive vibes.
Posted By: Michelle70605 Re: At a loss... - 03/28/12 11:14 AM
Originally Posted By: New Beginnings
Michelle, know I am alway here for you.

Hugs, Kisses and much love

Gerri & Makaylah


Oh Gerri, I do know...hugss and I'm thankful for it!! Kiss Makaylah for me... :hugss;
Posted By: Winter Re: At a total loss... - 03/28/12 11:24 AM
Michelle: I am so sorry you have to stop your Enbrel and methotrexate due to your health issues. It sounds like your doctors are being proactive to keep you comfortable. I'm going through a similar situation due to a stomach ulcer. I have been drinking a lot of gluten/dairy free vitamin shakes with my meals for the extra calories and vitamins. I too, suffer from weight loss. Also, I am finding, taking a 15 minute walk is helping me- even if it hurts like hell to walk.

Gentle hugs!

Shari
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 11:25 AM
No it doesn't seem fair, not for any of us, Louise... ohwell Yes, my doctor is awesome!!! As he's working his way through the rooms, you can hear him laughing, he's really close with his patients and I can ask him absolutely anything and feel comfortable, he's been fantastic!!! He reminds me of Dr. Cliff Huxtable... grin2 It is alarming, mostly because of the weight loss, I'm not stressed...or let me rephrase that, I don't have any abundant stress, my only 'worry' is this health scare but I haven't lost any sleep over it yet...I'm losing some sleep due to pain ...but here at KA, we're no stranger to that! crazy Thanks, Louise....you take care too, big, big hugs hugss
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 11:29 AM
Hi Langer and welcome to KA!!! smile It really is a GREAT place!!! thanks for the warm wishes, I really appreciate ... hugss
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 11:34 AM
Hi Shari, thanks for the tips, I was just wondering about something like that tonight...I'm sorry to hear that you're going through a rough patch too... hugss I was talking 3 to 4 short walks a day but my hips started flaring real bad, so I went in today and got shots in both of them, they should feel better in a couple days, I 'll be able to get in the pool pretty soon, it's been 85 degrees here for about 2 weeks now but that water is still a little too chilly... grin2 Thanks again... smile
Posted By: ValsMum Re: At a total loss... - 03/28/12 03:16 PM
Michelle,
I hope the best for you, I am praying for you and especially that you feel better. Please tell what happens at your appointments and test, you are in my thoughts.
Take care.
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 04:04 PM
Thank you so much, Sheri, I definitely will...it's so good to see ya, I hope all is well with you, big hugs... hugss
Posted By: cemc Re: At a total loss... - 03/28/12 04:20 PM
Loss of bone density can cause really significant weight loss, but scary that it has happened so fast. Hope the docs get to the bottom of it all, but sounds like you are in really good hands. Wish I had such a great doctor!
Posted By: MollyC1i Re: At a total loss... - 03/28/12 04:32 PM
Sheesh - Michelle - Sorry to hear this. Wretched for you. What drugs are you on? And, any of those bisphosphonates? If not, have you ever been on any of the Bis drugs?

TG you have a good medical and dental team - kudos to their concern.

Sending you (((HUGS))), white light, positive thoughts and all the rest - here, catch lass ---->>> ---->>> roll
hugss hrtballon hugss
Posted By: Dotyisle Re: At a total loss... - 03/28/12 05:49 PM
Hello Michelle,

Sorry to read about the bone/weight loss. Hopefully doctors can get this figured out quickly.

Keep us updated and prayers that all turns out well. You have been through enough already.

Tim
Posted By: rumble Re: At a total loss... - 03/28/12 06:39 PM
I assume they took a lot of blood for tests, right? Hope you get some answers, pronto. Be a squeaky wheel-call them up to ask about those blood tests and ask for copies. Look up anything that doesn't make sense. Big hugs on being off the meds for 2 months. That's going to suck--(I was off for 3 months last summer for an abscess---big time pain)--use those high powered pain meds!!! That's a lot of weight loss in 2 weeks. Big hugs for that, too.
Posted By: jpinperth Re: At a total loss... - 03/28/12 06:54 PM
Hi Michelle,

I just wondered if your taking something for bone density ? There is a side effect from them ,with regard to bone loss in the jaw.

Janet
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 08:38 PM
Hi Janet, I was on Fossomax and Atelvia but I only took each of them about 4 times because I heard about the necrosis of the jawbone, do you think it could done it that quickly?
Posted By: MollyC1i Re: At a total loss... - 03/28/12 08:44 PM
That's why I mentioned the Bis drugs Michelle - but as you have only taken x4 each, then most unlikely but...who knows! But it sure does sound like osteonecrosis. Suggest that you ask the question right out from yr doctor. Does not help to keep you in the dark! Bis drugs also cause long bone pain - renowned for it. In addition Bis drugs have a half life of 10 yrs. So, it is 'possible'. But you took them for such a short time.

Have a chat with yr doctor - hugss

Take care hon -
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 08:45 PM
Thanks Deb...well yes, this doc is great but the other one fed me 6 Nexium a day for 5 years and never did ONE scope and now I have Barrett's Esophagus and waiting on a esophagusectomy...so I have 2 great doctors, 2 good doctors, 3so-so doctors and 1 really bad doctor... I call them, Happy, Sneezy, Droopy, Dopey... laugh No, seriously, I only have 1 BAD doctor... grin2 ...the rest are great!!!
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 08:49 PM
Hi Molly... grin2 I started answering in the wrong order, sorry ...Thank you so much....AWESOME!!! grin2 Well, I had that one episode where I thought the right side of my jaw locked up for about 3 days and it was excruciatingly painful but it went away after 3 days, I just figured it one of those fruit-loops that our AS is always throwing at us... crazy When I say 4x each that's 4 months at a time, I refilled each like 4 times...so 4 months or so on each...what do they do for jawbone necrosis? spook
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 08:57 PM
Thanks Tim...hugss I must admit that this one has me a little nervous but I'm in all the way, if it is bad, I'm not folding...little strokes, right?! grin2 And how is Master Mateo these days? grin2
Posted By: jpinperth Re: At a total loss... - 03/28/12 08:58 PM
Hi Michelle,

I would doubt it but these drugs have a long half -life. You need to ask these question to your doc's.

Janet
Posted By: MollyC1i Re: At a total loss... - 03/28/12 09:29 PM
Jaw necrosis - darlin gal, depends on extent of the bone degradation. You must discuss with your doctor - worst scenario is to replace jaw (I posted on that on KA last year some time - or it might be two odd years ago). But, they could cut out and cut in a small prothesis. But, depends on the damage. They would do least possible to get away with.

And, it might not be Bis drugs related...

Here's a bit of info -
http://www.bagoliefriedman.com/2011/08/fosamax-jawbone/

and -

jaw bone replacement surgery | Cancer Survivors Network
csn.cancer.org/node/148526 - Similarto jaw bone replacement surgery | Cancer Survivors Network
8 Oct 2005 ... My husband had his entire upper jaw removed and reconstructed from bone in his leg as well. The surgery went well and you can hardly tell his ...

This one looks interesting -
http://www.myelomabeacon.com/news/2011/0...-jawbone-death/

There is a lot of information on the web - but first, I would request more detail from your doctor Michelle. Dearest gal, strongest of positive thoughts and many (((HUGS)))
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 11:21 PM
Hi rumble, how the heck have you been? grin2 How long after stopping the Enbrel & MTX did you start feeling the full pain? crazy Thanks for the heads up, I will have the big gun pain meds ready....yes, the weight loss?! spook Thanks for the hugs, friend... hugss
Posted By: Michelle70605 Re: At a total loss... - 03/28/12 11:22 PM
Thanks Janet... smile I do have a question though, what is a half-life?
Posted By: cemc Re: At a total loss... - 03/29/12 11:25 AM
"Half life" is a scientific term. It means the length of time it takes for 50% (half) of a substance to disappear/decay/be used up. Its a term commonly used in either drugs, or radioactive substances. With drugs, some have a very short half life, which means that the effects only last a matter of hours then its completely used up by your body. Other things stick around in your body for a lot longer, even though you may have to keep "topping up" the dose to keep it in the therapeutic range, i.e. at the level that it feels like and is doing something.
Posted By: Michelle70605 Re: At a total loss... - 03/29/12 02:27 PM
Thanks Molly... hugss I don't know what's going on but I'm down 4 pounds more since originally posting this, I have an appt. with an oral surgeon today, so hopefully I'll get some answers or at least clues or a definitive direction there... ohwell I'm hoping to hear that the bone loss in the jaw may be from a bone infection or something else going on and be totally unrelated to the weight loss and the Barrett's Esophagus and that maybe while all of these symptoms I'm experiencing are alarming and frightening that they are just random things going on and will be explainable and fixable...I really appreciate all of you... big, big hugs KA!!! hugss
Posted By: Michelle70605 Re: At a total loss... - 03/29/12 02:36 PM
Hi deb...thanks! I had never heard that term, though I'm sure it's been discussed plenty here... smile
Posted By: Pea Re: At a total loss... - 03/29/12 04:25 PM
Hi my friend,

Wish I had the $$$ to come down and be there for you for your surgery. Let us know what you find out today. God Bless!
Posted By: Michelle70605 Re: At a total loss... - 03/29/12 06:56 PM
Oh Pea, I know you would... heart I'm heading off to my appt., eating an ice cream bar, I had a little catfish for lunch, I've got an appetite today...hey, hey, hey... grin2
Posted By: rumble Re: At a total loss... - 03/29/12 08:20 PM
Originally Posted By: Michelle70605
Hi rumble, how the heck have you been? grin2 How long after stopping the Enbrel & MTX did you start feeling the full pain? crazy Thanks for the heads up, I will have the big gun pain meds ready....yes, the weight loss?! spook Thanks for the hugs, friend... hugss

At the time I was between Remicade and Enbrel, so only stopped the MTX. It only took missing one dose to start the plunge, but I was already halfway there. It got very bad in 2 months. And you know how long it takes to ramp up to relief. Once I got on the Enbrel, things moved up a wee bit. Took changing to twice-weekly doses after 4 months to make a real difference. It's relieved a good bit of my pain and the percs 4 times a day does the rest, usually. Spring has made a bit of difference, since I struggle every winter.

Your weight loss and night sweats concern me, thus the blood work might help. Doubt the combined 8 doses of bis- drugs could have damaged your jaw, but pointed questions should be directed to the docs. Wonder why you would have been scripted bis- drugs with a bad esophagus? (I had to stop Fosamax and later, Atelvia, for difficult swallowing issues. The problems stopped after that.) Good luck! Hugs to you.
Posted By: Michelle70605 Re: At a total loss... - 03/29/12 11:39 PM
Wow...that quickly, huh?! spook Yes, I struggle in the Winter as well...okay, here's the bis drug/Barrett's esophagus story...I have 2 PCPs, one inside of my network and one outside of my network, the PCP outside of my network receives a copy of EVERYTHING that is done by all of the doctors in my network, it provides me with a constant second opinion, I meet with him every 90 days to get his thoughts...the PCP in my network is the one that prescribed the bis drugs and Dxed and treated the GERD...I'm not familiar with GERD prior to my own GERD issues, so not well versed in treatment protocols...so, he puts me on Famatodine for GERD in 2007, then he switches it up to Nexium in 2009, as I report to him that my symptoms are progressively getting worse and that I'm experiencing dysphagia, he increases the dose over the next 3 years, I'm up to 6 Nexium a day right now...this PCP and I had a falling out about it, so in Dec. 2011, I switched to his partner in my network...first visit in mid December, the first question he asks, "So, I see you're taking a lot of Nexium and you've had GERD for awhile now, when was your last scope?" and I say, "What's a scope?" ...I've been had one!!! The first PCP had never even discussed that with me...well 2 weeks later, I go in for a barium upper GI and they see one hot mess!! spook So, now it's Barrett's Esophagus, with an esophagusectomy (sp?)scheduled for May 2nd...oh yeah, the bis drugs, the same PCP put me on those in '08... eyes So, that's the whole story... ohwell I really appreciate all the help... hugss
Posted By: Possi Re: At a total loss... - 03/29/12 11:55 PM
Michelle, I am so so sorry you are having so much trouble. You may remember that I had to quit all treatment. I understand so much of what you are going through. I was losing about a pound a day and was so exhausted. It ended up being my heart. I don't want to frighten you but just to suggest that seeing a cardiologist would certainly be in order.

Hugs and Blessings.
Possi
Posted By: rumble Re: At a total loss... - 03/30/12 07:15 AM
8 Nexium per day?????? eek2 Does your pharmacist seem alarmed? (To answer that question: see below--quoted material from the link provided.)

That's a whopper dose. One link mentioned Zollinger-Ellison Syndrome, which could account for the high dose you mention. Do you have any symptoms below?

A reminder to all, check all your meds to see that you understand doses/side-effects/contra-indications/drug-drug interactions. In this era of multiple specialists not knowing always what the others are prescribing, we must be our own advocates. Most of us are aware, but it doesn't hurt to remind everyone. Michelle, I hope you aren't feeling problems from this high dose. Hugs. Big ones.


nexium max dose

quoted from above link: CONTRAINDICATIONS

NEXIUM is contraindicated in patients with known hyper-sensitivity to any component of the formulation or to substituted benzimidazoles. Clarithromycin is contraindicated in patients with a known hypersen-sitivity to any macrolide antibiotic. Concomitant administration of clarithromycin with pimozide is contraindicated. There have been post-marketing reports of drug interactions when clarithromycin and/ or erythromycin are co-admin-istered with pimozide resulting in cardiac arrhythmias (QT prolongation, ventricular tachycardia, ventricular fibrillation, and torsade de pointes) most likely due to inhibition of hepatic metabolism of pimozide by erythromycin and clarithromycin. Fatalities have been reported. (Please refer to full prescribing information for clarithromycin.) Amoxicillin is contraindicated in patients with a known hypersensitivity to any penicillin. (Please refer to full prescribing information for amoxicillin.)

OVERDOSAGE

A single oral dose of esomeprazole at 510 mg/ kg (about 103 times the human dose on a body surface area basis), was lethal to rats.

The major signs of acute toxicity were reduced motor activity, changes in respiratory frequency, tremor, ataxia, and intermittent clonic convulsions. There have been some reports of overdosage with esomeprazole. Reports have been received of overdosage with omeprazole in humans. Doses ranged up to 2,400 mg (120 times the usual recommended clinical dose). Manifestations were variable, but included confusion, drowsiness, blurred vision, tachycardia, nausea, diaphoresis, flushing, headache, dry mouth, and other adverse reactions similar to those seen in normal clinical experience (see omeprazole package insert – ADVERSE REACTIONS). No specific antidote for esomeprazole is known. Since esomeprazole is exten-sively protein bound, it is not expected to be removed by dialysis. In the event of overdosage, treatment should be symptomatic and supportive.

As with the management of any overdose, the possibility of multiple drug ingestion should be considered. For current information on treatment of any drug overdose, a certified Regional Poison Control Center should be contacted. Telephone numbers are listed in the Physicians' Desk Reference (PDR) or local telephone book.
Posted By: Michelle70605 Re: At a total loss... - 03/30/12 01:59 PM
Oh Possi...I do remember that, very frightening time, you've been through sooo much... hugss I will mention this to my doctor, I hope you're doing okay, Joyce...you never cease to amaze me!!! hugss
Posted By: Michelle70605 Re: At a total loss... - 03/30/12 02:04 PM
Originally Posted By: rumble
8 Nexium per day?????? eek2 Does your pharmacist seem alarmed?


No, it was 6 Nexium per day(which is still a HUGE dose!! spook ) but no my pharmacist never said anything... but I've been fighting the excessive stomach acid production due to the MTX...so, maybe that's why but in retrospect, that's all the more reason the PCP should've been doing scopes... ohwell yes, that's very interesting info there...I'm going to read through it more thoroughly and see if any of it fits me, now they are saying at 120x the normal dose, these symptoms occurred, I'm only at 6 times the normal dose(unless I'm misinterpreting that)...but good news: no weight loss, this morning!! smile thanks rumble, big hugs... hugss
Posted By: rumble Re: At a total loss... - 03/30/12 06:05 PM
Six is still a lot (I must have not had my glasses adjusted right..lol--sorry on that), check out the other side-effects from the rest of the info at the link. Hope it didn't cause you any harm, dear. GERD in 2007, Bis- drugs start in 2008, then the dysphagia in 2009? Sounds suspicious to me. Hope your tests come out well (or easily treatable). Keep us posted.
Posted By: Michelle70605 Re: At a total loss... - 03/30/12 10:40 PM
You are so right rumble, 6 is a lot... I can't for the life of me figure out why that didn't set off bells and whistles with me... confused2
Posted By: rumble Re: At a total loss... - 03/31/12 06:42 AM
Not your fault--doctors need to have some sense and it seems like yours was not firing on all cylinders. But for your pharmacist not to see something odd...that's puzzling. Hence my plea for people to watch out for the meds they take. Any of us can get caught because we aren't the ones who went to numerous years of school to learn this stuff. And I'll give the docs a little leeway because there are so many drugs to keep up with...yada yada. When do you have your next appt with anyone?
Posted By: MollyC1i Re: At a total loss... - 03/31/12 11:16 AM
'So many drugs to keep up with' - and that is the truth of the matter. One has to be pro-active, right on the ball, otherwise...
Refused a prescribed medication at the pharmacy yesterday; contained sorbital and sulphate : one I refuse to take in any shape or form (sweeteners) and the other I cannot take (would be back to the sulphasalazine scenario!! OMG, horrific). Got to be *always on the watch and always check it out.
Posted By: Michelle70605 Re: At a total loss... - 03/31/12 11:27 PM
Originally Posted By: rumble
Not your fault--doctors need to have some sense and it seems like yours was not firing on all cylinders.


I have to agree with that 100%... eyes It is really going to upset me if this turns out to be something real serious that started out as a simple case of GERD... eyes I saw the oral surgeon yesterday, he took more x-rays and did a physical exam and said that his report should be back to my Dentist by Monday... ohwell
Posted By: Michelle70605 Re: At a total loss... - 03/31/12 11:35 PM
Originally Posted By: MollyC1i
(would be back to the sulphasalazine scenario!! OMG, horrific)
...no, that was bad, it's a good thing that you caught it! yes And yes, I agree one does have to be proactive, I get some of my medications by FedEx, some at Walgreens and some at the hospital pharmacy, where my PCP's office is, that's who dispenses the Nexium, so that explains why my regular pharmacist, at Walgreens didn't say anything, they don't fill that script there...now, ALL of them have a complete medication list, of all of the medications I'm on, even the ones that come directly from the lab, I just don't think that the Walgreens pharmacist knew how much Nexium they were giving me at the hospital pharmacy ... ohwell My BIGGEST REGRET is that I wasn't here at KA more during the last year...I would've known there was a problem with my Nexium intake and lots of other things a WHOLE lot sooner... confused2
Posted By: ilbcrzn Re: At a total loss... - 04/01/12 12:12 AM
Hi Michelle...This really sucks, what next? What is causing it? I guess you will know more Monday. I did not get a chance to read the other posts.Just wanted to let you know I care and hope you can get this resolved.
Posted By: Michelle70605 Re: At a total loss... - 04/01/12 02:05 AM
Hi Jeff... smile They aren't sure yet what the culprit is yet, I'm waiting on biopsy results... I know you care... grin2 extra big hugs, my friend!!! hugss
Posted By: MollyC1i Re: At a total loss... - 04/01/12 10:59 AM
But you have popped back in, and that is good. And, all is not lost, gird up thy loins and we'll all go kick some AS with ya... Think we're all awaiting on the results of those tests - waiting is wretched but does give one time to breath and get one's focus on dealing with a medley of scenarios. Holding your hand, positive thoughts are with you - big (((HUGS))) hugss
Posted By: Michelle70605 Re: At a total loss... - 04/01/12 10:16 PM
Originally Posted By: MollyC1i
Think we're all awaiting on the results of those tests - waiting is wretched but does give one time to breath and get one's focus on dealing with a medley of scenarios. Holding your hand, positive thoughts are with you - big (((HUGS))) hugss


hugss ...thanks so much, Molly... hugss To the second part, yes, I feel more focused, I've organized my list of questions that need answers...I'll let yall know what I hear tomorrow morning... big hugs & much love... Hugss: heart
Posted By: ValsMum Re: At a total loss... - 04/01/12 10:27 PM
Michelle,
When I'm at church tonight I will pray for you and for tomorrow's appointment. Take care,
Sheri
Posted By: Angelmom Re: At a total loss... - 04/01/12 10:57 PM
Yep BIG HUGS amd prayers that this is just a little blip and nothing serious!

Lisa
Posted By: Michelle70605 Re: At a total loss... - 04/02/12 01:54 PM
Thanks Sheri...big hugs, my friend hugss
Posted By: Michelle70605 Re: At a total loss... - 04/02/12 01:56 PM
Thanks Lisa... hugss I'm off to my appt., so hopefully I'll know something soon...
Posted By: Michelle70605 Re: Biopsy Results - 04/03/12 03:02 AM
Well, as it turns out the biopsy was positive for cancer...my weight is down to 122.5, if I fall below 120 pounds, I cannot have the surgery... ohwell
Posted By: snowshoe Re: Biopsy Results - 04/03/12 03:28 AM
Michelle, sorry to hear what you're dealing with. It's so difficult to deal with more than 1 major illness...becomes second guessing of symptoms, meds, drs, etc. It's confusing to sort out so don't have regrets OK? At least you realized that something was different. Your mind is probably spinning but once the drs have a strategy, you will be able to think clearly and charge forward. Best wishes
Posted By: inkyfingers Re: Biopsy Results - 04/03/12 03:36 AM
Oh Michelle,

SO sorry to hear that there is yet another uphill battle for you to wage war on! hugss

I know you have a great team of doctors looking out for you, and you have proven yourself to be ONE RESILIENT LADY - I hope they are quick to give you some answers and develop a good plan to tackle this thing by the horns! woof (no horned creature avatars to insert...)

Try and keep up the weight with shakes with extra everything added if your stomach can handle it - otherwise ask a dietician for some pointers?

Take good care of yourself my Friend, and we will be sending all the love and positive vibes we can muster your way, that's for sure! kiss

Keep us posted as we will keep you in our thoughts,
Posted By: MollyC1i Re: Biopsy Results - 04/03/12 07:57 AM
Michelle - so sorry to hear of this Dx. Dear Lord as if you haven't got enough on your plate. Shift the burden to the other shoulder and press on - but TG you have a good medical team to rally round and work out a programme of attack on the 'C' beast. Shattering to have to face. Many prayers winging over to you my dear. hugss
Posted By: cemc Re: At a total loss... - 04/03/12 04:40 PM
I am so sorry that you have to go through all this as well as everything else. ((((((((((((((((((((((hugs))))))))))))))))))))))))))) You are one strong woman - hang in there.
Posted By: Lon Re: Biopsy Results - 04/03/12 06:55 PM
Michelle,
we will continue to pray for you and your family as you make decisions and continue to fight for good health.
your friend,
Old Lon
Posted By: rumble Re: Biopsy Results - 04/03/12 07:45 PM
BIG hugs, Michelle. hugss Hope your docs and you can agree on a plan for treatment. Prayers! yes
Posted By: Angelmom Re: Biopsy Results - 04/03/12 10:12 PM
Im so sorry! I just dont know what to say I am in such shock...I just hope they can get a treatment plan in order and get you to feeling better and beat it!

Hugs!
Posted By: ilbcrzn Re: Biopsy Results - 04/03/12 11:23 PM
Oh Michelle...sorry to hear the news. I hope your doctors can come up with a good treatment plan for you. I don't know how you are with dairy but ice cream is the fastest way to gain weight. Heard that from more than one doctor.
Posted By: stevec Re: Biopsy Results - 04/04/12 02:09 AM
Keep fighting with all you have. You are one tough lady and have fought so many challenges in recent years. Prayers out to you that you get a break and some good news.
Posted By: Dow Re: Biopsy Results - 04/04/12 05:55 AM
heart !

Michelle! Sorry we have lost touch, but glad to be hearing from you. This is going to be one big battle, but there isn't anyone on this lil' planet more capable than you to fight it. Congrats on your progress of turning the tide on the weight loss. Can you try weight gain supplements like even those dreaded choco-flavored cans of Ensure to put a couple of pounds back on?
Posted By: jmh Re: Biopsy Results - 04/04/12 06:48 AM
michelle,
hello I'm new here but just wanted to say I'm very sorry to hear about the cancer. I dont say "hate" very much but cancer is one thing I can say I HATE. Also try some silk milk and ensure half and half i have a friend that does that to maintain weight,he dont like ensure by itself so he does that. just a thought.
Posted By: Megan Re: Biopsy Results - 04/04/12 10:16 AM
Holy [*bleep*] Michelle, I just heard. I'm totally shocked. Completely. And I'm so, so, so sorry. frown Why do bad things happen to such good people? Did they say what kind of cancer?

I'm going to hope and pray my hardest for you, and so you can get the surgery, and beat the c beast into submission right after that. I know this is exactly what you don't need, but from what I know about you, you are one very, very strong woman, and I know you can do this. I know it. TG you have good doctors.

You have a whole cheering section here whenever you need us!
Lots of luv and hugs! I'll be thinking of you lots.
Posted By: Gerri54 Re: Biopsy Results - 04/04/12 11:31 AM
Sending prayers, hugs, kisses, and love dear sister - with your strong will to fight you will beat this diagnoses for yourself, family and friends. Hugs Gerri & Makaylah
Posted By: Orch Re: Biopsy Results - 04/04/12 02:45 PM
OK Michelle your list is long enough. Hope you can keep the weight on, and all goes well. I keep hoping that I can make it down to your area, and we can have an AS party.
Posted By: avonldy Re: Biopsy Results - 04/04/12 05:28 PM
Michelle, my prayers are with you and your medical team. I am praying that they can come up with a treatment plan that will get rid of the cancer quickly. Keep up with the plan to gain some weight. I am sure you will beat this, you are one tough lady.
Posted By: Gerri54 Re: Biopsy Results - 04/04/12 09:15 PM
Hi Everyone, I just talked with Michelle, she wants everyone to know how much she appreciates all the caring messages. She is waiting for a call back from her doctor, as to how to proceed from here.

Hugs Sister, much love

Gerri & Makaylah
Posted By: MollyC1i Re: Biopsy Results - 04/04/12 09:22 PM
Thanks for that Gerri - am very concerned - and - words fail one. Thanks gal -

Hugs - an scritches to Makaylah
Posted By: Michelle70605 Re: Biopsy Results - 04/05/12 02:45 PM
I woke up this morning and my weight is at 118 pounds, so they are hospitalizing me, thank you so much for your support everyone, it means the world to me... hugss
Posted By: MollyC1i Re: At a total loss... - 04/05/12 03:31 PM
Bon chance - je vous embrace hugss heart hugss
Posted By: Lon Re: Biopsy Results - 04/05/12 10:21 PM
Michelle,
you mean a lot to us!
We think about you and are parying for a complete recovery!
Posted By: ValsMum Re: Biopsy Results - 04/05/12 10:37 PM
Michelle,
I am sorry to hear this and I am thinking about you and praying for you to get better. You are a wonderful person and very friendly and an assett to everyone that knows you. Love, Sheri
Posted By: mig Re: At a total loss... - 04/06/12 03:18 PM
Oh Michelle, after all you have been through, it just seems so utterly unfair that you have another battle to face. I really hope that you will receive the very best of care and rest in the hospital, along with a treatment plan that will renew your hope.

Please know that you are in my thoughts too, I'm wishing you every bit of strength that you will beat this and be feeling stronger again soon.
Posted By: Lon Re: At a total loss... - 04/06/12 04:37 PM
So Michelle,

As you reflect on what is important, and fight for good health; remember that you have been a blessing and that even in your weakness you have things to offer.

Any specific prayer requests for me?

agape'
Lon
Posted By: Michelle70605 Re: At a total loss... - 04/08/12 05:46 PM
Hi Yall... I was able to come home today to spend Easter with my family, it feels so good to be home... yes Words cannot describe how much I appreciate you all, the outpouring of love & support has touched my heart, so very deeply... heart Thank you for the prayers, cards, flowers, calls, there's so much to be thankful for...thank you for everything!!! heart heart heart Lon, you never cease to amaze me, always thinking of others... hugss ...I do have a special request from you, my friend... please pray for Michael, he is really struggling with this and I'm worried about him... no Mig, I wish I could snuggle with that kitty, it looks so cozy... yes I'll be back on this evening, after everyone leaves.. thank you again, my KA family...you truly are a blessing!!! heart
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 01:58 AM
Thank you so much, snowshoe...I'll take your advice, no regrets... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:04 AM
Hi Louise, I really appreciate all the great advice...the hospital dietician came in and gave me a crash course and tons of literature, so I know that'll help a lot...thanks for the love & positive vibes too... heart
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:06 AM
Thanks Molly...you've been my rock so many times, my good friend, I don't know what I'd do without you...thanks again for everything, Molly...big hugs & much love... hugss
Posted By: Michelle70605 Re: At a total loss... - 04/09/12 02:10 AM
Thank you cemc, your support is very much appreciated, friend... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:11 AM
Thank you rumble, I so appreciate all you've done... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:25 AM
Thanks Jeff, I've been eating so much BlueBelle, I'm surprised I haven't started mooing yet... smile It is nice that I HAVE to eat it, no guilt that way... cool
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:26 AM
Thank you so much Steve, I hope you had a wonderful Easter, my friend... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:28 AM
Wow, Dow...thank you! blush I feel like a Superwoman now... smile Thanks, friend... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:29 AM
Hi jmh, welcome to KA!!! smile Thanks for the silk milk tip, i'm going to give it a whirl, those Ensure drinks...blech!
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:31 AM
Awe Megan...thank you so much, I really appreciate that, I hope things are well with you... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:31 AM
Thanks Gerri, big hugs & much love, sister... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:32 AM
Orch...yes, please, please, please...KA party here!!! Come on ahead, anytime!!! yes
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:34 AM
Thank you so much, Donna, big hugs, my friend... hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 02:35 AM
Sheri, thank you so much for the kind words and prayers, I appreciate it so much, friend... hugss
Posted By: Michelle70605 Re: At a total loss... - 04/09/12 02:40 AM
Mig...thank you so much, I really appreciate you!!! heart The kitty in the pic looks so adorable, I'd like to curl up beside him or her... thanks again for the words of encouragement, my dear friend...hugss
Posted By: manatee Re: At a total loss... - 04/09/12 03:58 AM
Hi Michelle, I'm sorry it's taken me so long to get here. I've been reading this whole post one page a day. You are a pillar of strenghth on kickas and oh so special to us all. I do hope you take time to read all this again and find comfort in all the genuine outpouring of love and concern we all have for you. You are so special to us and hopefully this will help you get through all this.
I will keep you in my prayers

Cindy
Posted By: Inanna Re: Biopsy Results - 04/09/12 07:15 AM
Michelle, I'm just catching up on all of this. It's all just too much that you have this now. I'm sending white light and love your way.

Warm hugs,
Posted By: Michelle70605 Re: At a total loss... - 04/09/12 04:08 PM
Oh Cindy, thank you so much, yall are so important to me too, I don't know how I would've made it through these last few years without my KA family... hugss I do find so much comfort here, yall have been holding me up for quite some time now and I'm so very fortunate to have you... big hugs & much love, my very dear friend... hugss heart
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 04:15 PM
Thank you so much, Kat, I really appreciate it, my friend... hugss You've been on my mind quite a bit lately, how are things with you? ...I hope everything is great, you've had a few rough years too and it's time you got a break... yes Big, big hugs... hugss heart
Posted By: Magician Re: At a total loss... - 04/09/12 06:15 PM
Oh, Michelle, I have been following this post and my comfort zone went to fear when hearing of your uphill battle. I added you to my daily prayer list, Girl. With the ultimate power on your side, you will conquer this battle. I am sorry if I am rambling. It is hard to put one's feelings onto a screen. frown Don't have the gift of gab with me so am faltering. I am about to lose my house but what you are facing is tougher. Please grab onto my strength and use it for your battle. Please keep in touch with everyone here 'cause we all love you, you know that?
Posted By: Dotyisle Re: Biopsy Results - 04/09/12 07:53 PM
Hello Michelle,

So sorry to hear biopsy was positive and back in hospital. Glad you could make it home for Easter a bit.

Prayers and warm hugs for you, keep on Kicking and fighting, we need you here.

Tim
Posted By: Michelle70605 Re: At a total loss... - 04/09/12 10:52 PM
Magician...thank you so much!! hugss heart
Posted By: Michelle70605 Re: Biopsy Results - 04/09/12 10:59 PM
Thanks Tim, I really appreciate that...hugss ...but it is I who needs you... smile I am always so amazed by the amount of love & support that I get here at KA!! heart ...there is no place like it anywhere in the world...yall have carried me through the worst times in my life, I owe a debt of gratitude so large, that it cannot be measured...you are the best!!! smile
Posted By: Pea Re: Biopsy Results - 04/10/12 01:42 AM
Hi Michelle,

I am so happy that you got to come for Easter to be with your family. God bless you during this time. Our lives are so precious and you have been a blessing to this board! You keep fighting the "good" fight and we will pray that this operation get's all of that cancer out and you will have a speedy recovery. So glad that you let us know what is happening. Look at how many people care about you. That is because you are a special person. You are in my prayer's.
Posted By: elmerfudd Re: Biopsy Results - 04/10/12 02:25 AM
Dear Michelle,

Although we have never talked, I think of you as a leader in this forum, someone who I look up to. Your in my prayers, your family is in our prayers.
May God bless you and your family, may God bless the entire KA community!
Posted By: Michelle70605 Re: Biopsy Results - 04/10/12 07:42 PM
Thank you so much, Pea...hugss ...this board has been such a blessing to me!!! heart
Posted By: Michelle70605 Re: Biopsy Results - 04/10/12 07:44 PM
elmer...wow, I don't know what to say... blush Thank you so much for the compliments...it is this community here at KA that has held me up through so much and I'm so thankful to have yall, I really am, I would be lost without my KA family right now... heart
Posted By: rumble Re: Biopsy Results - 04/11/12 05:13 PM
Hope all is going well for you, Michelle. So what's next for you? Have the doctors decided how to proceed? Hope they are all in agreement with each other...it's always hardest when there are differences of opinion among the professionals.
Posted By: Michelle70605 Re: Biopsy Results - 04/12/12 04:29 AM
Thanks rumble... hugss well right now, the main focus is keeping my weight up, my fever down and my body infection free...I've been fighting pyleonephritis for about a month, I'm on my third round of antibiotics for it and I've had a sore throat the last few days, but my fever is down, it had been staying at 101 during the day and 102 at night but it was down to 100 today and I've gained 4 pounds!!! smile My surgery is scheduled for May 2nd and immediately following the esophagectomy and removal of the lymph nodes, I'll have a PET scan and we'll know a whole lot more then, so a little longer to wait on that but they are running lots of tests in the meantime...
Posted By: avonldy Re: Biopsy Results - 04/12/12 05:27 PM
Keeping you in my prayers. (((((Hugs)))))
Posted By: snowshoe Re: Biopsy Results - 04/12/12 07:21 PM
Michele, don't think I've ever wished someone to gain weight but hope you can pack on the pounds! wink
Are you allowed to eat lots of ice cream? grin
Posted By: Sassy Re: Biopsy Results - 04/12/12 07:38 PM
Yanno....I have plenty of weight to share. I can come to see you and lay on a bed next to you in the hospital. They can suck the fat out of me and into you! That is a win/win situation!

All kidding aside, I hope that things work out well for you. You are in my prayers.
Posted By: Pea Re: Biopsy Results - 04/12/12 08:53 PM
Michelle,
When you first started posting, I immediately gravitated to your picture. It show's a very happy person full of life and spirit and ready to conquer anything! Love that picture and your fighting spirit. It will get you through this. We all love and support you.
Posted By: Michelle70605 Re: Biopsy Results - 04/13/12 12:35 AM
Thank you so much for the prayers, Donna...big hugs, my friend... hugss heart
Posted By: Michelle70605 Re: Biopsy Results - 04/13/12 12:37 AM
Originally Posted By: snowshoe

Are you allowed to eat lots of ice cream? grin


Absolutely!!! grin2 I'm an ice-cream addict anyway...now I have a legitimate excuse for hogging up all the Bluebelle!!! grin2
Posted By: Alida1 Re: At a total loss... - 04/13/12 01:18 AM
Michelle...I just picked up on this as well. Your pups are my fav....You are in my thoughts and prayers as well. Since you have the go ahead to eat ice cream, get the really creamy good stuff...Ben and Jerry's, Haggen daz. Have you tried making some shakes to keep the weight up as well.

My brother gained 15 pounds when his jaw was wired shut...I can ask him what he put in those shakes he made. If I can help in any way, I will try, my darndest...

Posted By: Michelle70605 Re: Biopsy Results - 04/13/12 09:27 AM
Originally Posted By: Sassy
I can come to see you and lay on a bed next to you in the hospital.


Love it!!! grin2 ....Thanks, Sassy.... Big hugs!! hugss
Posted By: Michelle70605 Re: Biopsy Results - 04/13/12 09:32 AM
Thanks Pea, you've been such a blessing through all of this and I appreciate you, so much, more than words can say, big hugs & much love, my friend... hugss heart
Posted By: Michelle70605 Re: At a total loss... - 04/13/12 09:37 AM
Hi Alida...Mike and the kids have been bringing me shakes and malts, I'm eating a lot the last couple of days...grin2 so, hopefully I'll be able to pack on a few pounds...and yes, it would be nice to get some of those recipes from your Brother, thank you so much...hugss
Posted By: Magician Re: At a total loss... - 04/13/12 05:13 PM
I am trying to think of great weight gaining foods but all I can come with are all junks foods. Naturally. Me and junk. we have this close relationship thing going on.
Posted By: Michelle70605 Re: At a total loss... - 04/13/12 05:19 PM
Originally Posted By: Magician
Me and junk. we have this close relationship thing going on.


laugh2 laugh2 laugh2 ...thanks for the laugh, Magic, I really needed it!!! grin2
Posted By: Michelle70605 Re: At a total loss... - 04/13/12 05:22 PM
Originally Posted By: Alida1
Michelle...Your pups are my fav...


Thanks Alida, they're spoiled rotten!!! grin2
Posted By: Farinelli Re: At a total loss... - 04/14/12 02:11 AM
Michelle~

I am so sorry to learn of your cancer diagnosis. You and yours will be in my thoughts and prayers. I am at a loss for words.

Take care,

Craig
Posted By: Michelle70605 Re: At a total loss... - 04/14/12 04:15 PM
Thank you so much, Craig... smile It's great to see you, how have you been doing? I hope all is well with you...big hugs, my friend... hugss
Posted By: Farinelli Re: At a total loss... - 04/14/12 04:24 PM
I have been doing well. The AS is status quo. My hands and wrists have been bothering me more than usual. I have been getting weird feelings in my legs once and a while. Almost like restless legs. All in all, I can't complain though.

Craig
Posted By: Geo Re: At a total loss... - 04/14/12 10:05 PM
Michelle,

I am new to the boards - but just wanted to pass on my best wishes to you and yours and hope that you get a lucky break!

All the best and see you about,

Geo.
Posted By: Michelle70605 Re: At a total loss... - 04/15/12 01:14 PM
Sorry to hear that the hands & wrists are giving you trouble... hugss I had strange feelings, much like you describe, in my legs a couple of years ago...feel better soon, Craig... hugss
Posted By: Michelle70605 Re: At a total loss... - 04/15/12 01:16 PM
Thank you so very much Geo...and welcome to KA!!! smile It's a great place, full of wonderful people and tons of support & information!!! smile
Posted By: Alida1 Re: At a total loss... - 04/15/12 01:45 PM
Michelle,

My brother finally came through this is what he said:

"take what you want to eat and add milk (I would use what ever milk you use ie, coconut, almond), blend in blender. Thatís all I did, you name it, blend in blender with milk. "

He told me he would take anything, roast, burger, et el and blend...If it was me I would try one thing at a time...
Posted By: MollyC1i Re: At a total loss... - 04/15/12 02:50 PM
'Blech' - <LOL> Only a bloke! Roast, burger, the lot, stuff in blender an add milk...Yea *Trying to 'imagine' what the result might taste like...!!

Michelle - awaiting with bated breathe - glad there is a watery divide in between... (Alida, the best larf of the day gal -)
Posted By: Alida1 Re: At a total loss... - 04/15/12 05:50 PM
Originally Posted By: MollyC1i
'Blech' - <LOL> Only a bloke! Roast, burger, the lot, stuff in blender an add milk...Yea *Trying to 'imagine' what the result might taste like...!!

Michelle - awaiting with bated breathe - glad there is a watery divide in between... (Alida, the best larf of the day gal -)


I know MollyC1i....but he had his jaw wired shut for something like 3-6 months and gained 15 or so pounds, so I thought I would ask him for the recipes he used....little did I know what he would tell me.
Posted By: MollyC1i Re: At a total loss... - 04/15/12 05:55 PM
Awww shoot, poor guy. Miserable for him. But, hmmmmm. Why not juice the meat separate from the milk - like have 'shakes' in two meals... Fellas. Tell ya <LOL> (But better than my nephew who is fed on a spigot, can't taste owt as unable to swallow. Nasty).

Take care -
Posted By: Michelle70605 Re: At a total loss... - 04/15/12 10:17 PM
Originally Posted By: MollyC1i
(Alida, the best larf of the day gal -)


...I have to agree!!! laugh2 laugh2 laugh2
Posted By: Michelle70605 Re: At a total loss... - 04/15/12 10:19 PM
Originally Posted By: Alida1
....little did I know what he would tell me.


... laugh2 laugh2 laugh2
Posted By: Michelle70605 Re: Pain, pain & more pain... - 04/17/12 06:09 AM
...tomorrow will make 2 weeks since my last Enbrel & Methotrexate injections and my body is just screaming... cry (wow, you weren't kidding, rumble! no )...I have Oxy on hand for breakthrough pain but I haven't taken it yet...I'm just miserable, my fever is spiking again and I can't get this pain under control... I was okay but a weather system moved in last night and I think it kicked off this flare...even though the meds were prescribed together, I don't know if you are supposed to take them at the same time or space them out, I took my hydrocodone about 2 hours ago, I called the 24hr Walgreens but had to leave a message after holding for 20 minutes, they must be really busy...I'm just praying the pharmacist calls back and tells me that I can go ahead and take it... frown
Posted By: Pea Re: Pain, pain & more pain... - 04/17/12 04:09 PM
Call your Dr. Michelle. I don't know if they can give you a Prednisone taper or not but you have to get the fever and pain under control. I know honey you don't want to go to the hospital yet but if it all get's to be too much, you might have to. I am praying for you. Take some hot bath's until you hear back from the Dr.s and let the med's kick in while in the tub. Wish I were there for support. God Bless and lot's of gentle hugs.
Posted By: Michelle70605 Re: Pain, pain & more pain... - 04/18/12 11:12 PM
I saw the doctor this morning, I'm back on the antibiotics but feeling just lousy, off to bed, thanks Pea, big hugs...hugss
Posted By: ilbcrzn Re: Pain, pain & more pain... - 04/19/12 12:09 AM
Sorry you are not feeling well Michelle, Hope the antibiotics and rest will help you. smile
Posted By: Michelle70605 Re: Pain, Insomnia... - 04/19/12 07:45 AM
Thanks Jeff... hugss I just can't seem to stay asleep, I fell out around 10:30 but the pain woke me up about 15 minutes later, my fever spikes at night...hopefully, as you've said, the antibiotics will help, it's just that every time I finish up a round, I start feeling bad again within a day or two... confused2 I wonder what's causing what too, my MS symptoms are back in action... eyes (which happens with me everytime I have to abruptly stop the Enbrel & Methotrexate), dropping things, running into everything, tripping over my own two feet, slurred speech, etc. and I'm sure being off those medications is also adding to my pain levels, the cause of the fever is still unknown, my doctors can't find an infection and the fever could be caused by the cancer itself. I don't know, Jeff but I appreciate you, friend...hugss

Michelle
Posted By: Michelle70605 Re: 13 Days... - 04/19/12 04:16 PM
Here is what I MUST do in the next 13 days...

April 20th- Mediate BP Claim for my shrimp business
April 23rd- Miss Kaitlyn hearing
April 26th- Surgery Clinic-Pre-Op Appt.
April 27th- Mediate Barataria Bay Case
May 1st- Disability Hearing
May 2nd- Surgery

I don't know how I'm going to swing this but nobody else can do this for me and these people owe me, real big and I can't just let it wash, I've worked hard all of my life for that... ohwell I'm at a crossroad here with this, yall...any advice?

Posted By: MollyC1i Re: 13 Days... - 04/19/12 04:37 PM
Shiver me timbers Michelle. Talk about pouring... eek Will you have to speak at the hearings? Attending, but are 'you' required to speak? If to sit and hear it out, yes, will be traumatic but so long as not required 'to' speak then perhaps bearable? (Could have your lawyer make a plea to the judge if you have to speak, that is, don't grill the gal?)

Looking at that line-up, 20, 27 April and 1 May (for 'me') would be the worst. Got to be on yr toes, listening good and responding and being ready to go in and do battle.

Pre-op, that is almost a doddle - though stressful, as they play 'pass-the-parcel' with you! But no battle as such involved. Bring a book. Bring in a thingy player. Meditate. Then go indulge in a plateful of yr fave ice-cream - you 'earned' it gal. yes

Disability hearing. Stressful. Don't forget to ask for a chair. Bring water with you. Be pathetic. (IF you can...!)

May 2 - relax, you will be in good hands. Strong thoughts and good guidance to the surgeon and his group.

All power and white light to you hon - Bless. hugss
Posted By: Michelle70605 Re: 13 Days... - 04/19/12 10:41 PM
Originally Posted By: MollyC1i


Got to be on yr toes, listening good and responding and being ready to go in and do battle.

Pre-op, that is almost a doddle - though stressful, as they play 'pass-the-parcel' with you! But no battle as such involved. Bring a book. Bring in a thingy player. Meditate. Then go indulge in a plateful of yr fave ice-cream - you 'earned' it gal. yes

Disability hearing. Stressful. Don't forget to ask for a chair. Bring water with you. Be pathetic. (IF you can...!)

May 2 - relax, you will be in good hands. Strong thoughts and good guidance to the surgeon and his group.

All power and white light to you hon - Bless. hugss


It's going to be rough, but once it's over, I can lay down and rest well... smile Thanks for all the great advice, Molly..you always steer me right and keep me on point, target and goal... you're aces!!! smile Big hugs, my friend... hugss
Posted By: manatee Re: 13 Days... - 04/20/12 03:51 AM
Michelle, I just wanted to let you know that you have been at the top of my prayer list each and every day. I so wish there was something else I could do for you. Please know that you are so special to all of us here. I'm glad you let us know what day your surgery will be. I know we will all be with you May 2nd. Please keep us updated on how you are doing every day.
:hugss heart hugss heart

Cindy
Posted By: Michelle70605 Re: Pain med Nucynta ? - 04/20/12 06:08 PM
Thank you so much, Cindy!!! hugss ...My doc prescribed all new pain meds today, Fentanyl patches and a new drug that I've never heard of before, it's called Nucynta? I hope it does the trick.. ...I have to say though, it was very disturbing when the pharmacist was giving me my 'consult' for these medications, she said, "You know they prescribe this medication(the Nucynta) to cancer patients, right?". I said, "Yes, that's why they prescribed it to me." And she simply said, "Oh.." and went right on...it was one of those 'somebody pinch me' moments, like... 'is this REALLY happening right now? ...to me?', the conversation made it somehow more real...or I guess I should say surreal... crazy2
Posted By: Alida1 Re: Pain med Nucynta ? - 04/21/12 02:39 PM
Michelle,

sorry I've been off dealing with a contractual issue for my blind m-i-l...me screaming...k I feel better

Please take it one minute at a time with all you have on your plate.

make notes, so as not to forget something of importance (especially since you've had such health issues that take the starch {even literally ;)} right out of you) and organize everything before each and every thing you have to do. There is alot, but plan, plan, plan for each issue and event.

Double check everything before you head out!!!

Hang in there and try to stay as positive as you can. You will get what you need.

A
Posted By: MollyC1i Re: Pain med Nucynta ? - 04/21/12 05:42 PM
Pencil and note book with you to the hearings - might want to make some quick notes to refer to when it comes to your turn to state your own case -
Posted By: Michelle70605 Re: Pain med Nucynta ? - 04/23/12 12:29 AM
Hi Alida, I appreciate the help on organizing and preparing...it's really helpful right now, I've started the countdown and I'm starting to get stressed, thinking that something is going to be overlooked...I don't know what I'd do without you & Molly... angel3d angel3d ...I'd probably forget my own head on the counter on the way out... crazy2 I hope things go with with your M-I-L...at first I was thinking, M-I-L..you screaming...K ...MILK!!! cheerleader , then I got it... eyes Thanks again, Alida... smile Michelle
Posted By: Michelle70605 Re: Pain med Nucynta ? - 04/23/12 12:34 AM
Molly, when I go to my disability hearing, should I just inform them of the cancer Dx when it's my turn to speak? ...I don't think they'll have these most recent medical reports in their files yet?? ...Notebook & pen...got it!! grin2 I appreciate you, I was just telling Alida how much I appreciate all of the preparation/organizational help... smile Thanks Molly... hugss

smile Michelle
Posted By: MollyC1i Re: Pain med Nucynta ? - 04/23/12 10:54 AM
Yes. And, ust to reinforce your health position, tell em, that in conjunction with all your other health problems : ankylosing Spondylitis; kidney N.; MS; TOS; Bursitis (pull the big ones by name)- and several other problems, you have just received the devastating news that you now have cancer of... (and IF you also have osteonecrosis of the jaw? then throw that in as well). So, remind em first of the biggies that they should have on record for you, then, throw in the boulder. Floor em. Bring a bunch of paper hankies with you, but don't overplay. 'Pathetic' but very 'brave' lady.

Strong thoughts gal (((HUGS)))
Posted By: Michelle70605 Re: Cancer Dx/SSA hearing - 04/23/12 06:01 PM
That sounds like a plan... smile They still have no idea what has caused the jawbone loss, they are doing a PET scan, so no news as of yet on that but I can bring them the Cancer Dx, thanks again, Molly... hugss
Posted By: MollyC1i Re: Cancer Dx/SSA hearing - 04/23/12 09:29 PM
Michelle - You can allude to the osteonecrosis of the jaw, bring that one up like as an afterthought? Like, 'Oh, and this has also a been discovered, but has yet to be investigated?" Slip it in, but like, you can't even bear to think about it.

It won't be over the top, it is what it is...to be discovered, and resolved.

Strength to your javelin arm...an Olympic throw -
Posted By: ValsMum Re: Cancer Dx/SSA hearing - 04/25/12 03:42 AM
Michelle,
You have so much going on, I can't believe it. I am still thinking about you, and hoping and praying for the best.Hope it works in your favor. I have no advice to offer,but I hope it goes well.
love,sheri
Posted By: Michelle70605 Re: Fever... - 04/25/12 03:00 PM
I think that's a good way to present it...the truth is though, I'm going to have to also tell them that my docs are thinking that something more sinister may be going on in the bones... There was discussion yesterday that I may have 2 Primarys... ohwell ...and the fever is a burnin'!!! I feel like I'm on the sun...no, I take that back I feel like I AM the sun!!! spook Thanks for your help in this, Molly...you're the best!!! heart

Michelle
Posted By: Michelle70605 Re: Fever... - 04/25/12 03:02 PM
Hi Sheri...yes, things tend to be like that in my life, so when things are good, they're great!! grin2 I really appreciate all of the well wishes from you, big, big hugs, my friend... hugss

smile Michelle
Posted By: Lon Re: Fever... - 04/25/12 03:36 PM
Dearest Michelle,
I think some of this could be the meds. When I have medicated with Oxycontin, and for a few brief hours, am pain free, I will start to sting and be flushed, then the anxiousness sets in.
I am not comparing my illness to yours.... but I sure would ask for some kind of relief.. for the hot burning sensation. Does the burning run bone deep?
All of us are praying for you. and we send our love and best wishes to you.
Please, if you care to, explain what to primary's means.
Posted By: Michelle70605 Re: High Fever... - 04/25/12 10:06 PM
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... sick ...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... crazy2 ...and Lon, I know you aren't comparing your illness to mine, you are one of the most selfless people I know! yes 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... hugss

Love, Michelle heart

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... ohwell 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...
Posted By: Michelle70605 Re: Adenocarcinoma - 04/27/12 08:34 PM
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! crazy2)...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... smile The jawbone...they have no idea what is going on there yet, or even if it's limited to just the jawbone... ohwell ...they said they'll know more after the PET scan and that they have a lot more tests to run... ohwell 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... smile Thanks for everything my KA family, I'd be lost without yall, big hugs & much love... hugss heart

smile Michelle
Posted By: ilbcrzn Re: Adenocarcinoma - 04/28/12 01:06 AM
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. smile
Posted By: avonldy Re: Adenocarcinoma - 04/28/12 02:58 AM
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.
Posted By: MollyC1i Re: Adenocarcinoma - 04/28/12 08:25 AM
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 hugss heart hugss May all the powers that be guide the surgeon and his team, and you to full recovery - hugss
Posted By: Winter Re: Adenocarcinoma - 04/28/12 10:19 AM
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 smile.

Keep getting lots of rest, eat super healing foods, vitamins and let me know if you need anything.

Gentle hugs - Shari
Posted By: Michelle70605 Re: Adenocarcinoma - 04/28/12 05:13 PM
Thanks Donna... hugss I've been getting packed up for my hospital stay this morning... crazy2 I'm not bringing much, I just want to get everything I can think of out of theway this weekend... Big hugs, my friend... hugss

smile Michelle
Posted By: Michelle70605 Re: Adenocarcinoma - 04/28/12 05:25 PM
Originally Posted By: MollyC1i
Bravo the mediation - over and done with, and successful. Good news.


Thanks Molly... smile

Originally Posted By: Mollyc1i
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... smile ...TG on that one!! smile ...I didn't want radiation, at all... no 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... hugss
Posted By: Michelle70605 Re: Adenocarcinoma - 04/28/12 05:48 PM
Awe Shari...thank you so much... smile You have become such a great addition to our KA family...so glad to have you here!!! Big hugs, friend...hugss

smile Michelle
Posted By: Gerri54 Re: Adenocarcinoma - 04/28/12 09:54 PM
Makaylah & I are sending hugs and kisses - thinking of you often - much love

Gerri & Makaylah
Posted By: Alida1 Re: Adenocarcinoma - 04/28/12 11:49 PM
Michelle...sending you all of our prayers and love for a quick recovery from this surgery and keeping everything crossed that it will be successful.
Posted By: Pea Re: Adenocarcinoma - 04/29/12 02:08 AM
Oh Michelle, they found more? I am so sorry. Sister, I am praying for you and for your family and your whole medical team. Ask them while they are in there digging and tweaking if they can just go a bit further back and fix any jacked up A.S. neck problems!!!! Sorry, couldn't help myself. I hate bad new's.

So happy that the mediation went well. You certainly deserve a whole lot of good news about right now. I can't believe the time is already almost here for your surgery. I will be sending God a lot of knee mail that day. Love you girl.
Posted By: Michelle70605 Re: Adenocarcinoma - 04/29/12 10:07 PM
Thanks Jeff...hugss It really is starting to happen fast, I can't believe that it's 2 days away already! crazy2
Posted By: Michelle70605 Re: Adenocarcinoma - 04/29/12 10:08 PM
Thanks Gerri, I really appreciate you, sister... Kiss Makaylah for me...Big hugs & much love... hugss heart

Posted By: Michelle70605 Re: Adenocarcinoma - 04/29/12 10:10 PM
Thanks for all the prayer and support, Alida... hugss
Posted By: Michelle70605 Re: Adenocarcinoma - 04/29/12 10:19 PM
Hi Pea, well, they did another Endoscope about a week after they told me that the biopsies from the first scope came back cancerous but the second time, they took more samples but further in than the first ones and they also took lots of samples of the mucousis(sp?), I asked the surgical nurse why they did that and she said that it was normal, they always scope and biopsy again if it comes back as cancer, to further assess the situation before surgery... I knew there was a lump in my throat but I didn't pay much attention to it because I thought it was just a swollen gland or lymph node, if I lean my head back, you can see it, I first noticed it this last year... ohwell Got a laugh out of your phrase, 'knee mail'... smile Tomorrow is my disability hearing and then I will check into the hospital tomorrow afternoon... I'm glad you're home...Luv you too!!! heart

Posted By: rumble Re: At a total loss... - 04/30/12 04:51 AM
Best wishes and heart God Bless hugss on all the irons you have in the fire right now. Hope your hearing is good ('Uh, did I mention that I'm having CANCER SURGERY tomorrow, judge?') and you are as relaxed as you can be for your surgery. Big, gentle hugs, Michelle. hugss Let us know how you are doing whenever you can.
Posted By: Inanna Re: Adenocarcinoma - 04/30/12 05:27 AM
I'm sending white light and love your way, Michelle. I hope the surgery and chemo knock this thing to the next galaxy!

Warm hugs,
Posted By: Michelle70605 Re: At a total loss... - 04/30/12 03:12 PM
Thanks rumble, great plan... smile Molly has the same idea, ever so innocently, drop the bomb on 'em!!! laugh2 My lack of sleep is working on me...hearing is tomorrow, then surgery Weds., getting ahead of the calender...I guess I'm just in a hurry to get this out of me... crazy2
Posted By: Michelle70605 Re: Adenocarcinoma - 04/30/12 03:14 PM
Thanks so much, Kath... hugss I know you have so much going on right now, sweetie...big hugs to you & much love, my friend... hugss heart
Posted By: Lon Re: Adenocarcinoma - 04/30/12 04:46 PM
Many hugs and prayers!

We did not have snow here..
first time in 4 days..

Love
Lon
Posted By: avonldy Re: Adenocarcinoma - 04/30/12 05:04 PM
I am keeping you in my prayers. I hope that the disability judge is a good one and says yeas and that the cancer treatments go well. Sending lots of love and hugs.
Posted By: Michelle70605 Re: Adenocarcinoma - 05/01/12 12:45 AM
Thanks Lon... hugss It was wonderful talking with you today, my friend, it meant the world to me... smile big hugs & much love... hugss heart
Posted By: Michelle70605 Re: Adenocarcinoma - 05/01/12 12:46 AM
Thank you so much, Donna... smile big hugs, girlfriend... hugss
Posted By: Dotyisle Re: Adenocarcinoma - 05/01/12 02:27 PM
Hello Michelle,

Sorry to hear tumors have spread a bit more, continued prayers and gentle hugs to you.

With temperatures at night that high, should you already be in hospital? Those are quite high.

Best to you,

Tim
Posted By: sherri Re: Adenocarcinoma - 05/01/12 04:15 PM
Dearest Michelle.....I am just reading this now. I had no idea. My heart goes out to you my dear friend and it's hard to type through the tears. Sending you all my love and positive vibes to get you through this xoxoxoxoxoxoxo

Sherri
Posted By: naj Re: Adenocarcinoma - 05/01/12 11:12 PM
Dearest Michelle,
thinking of you so much, and will be.
Just catching up on kickas news and so sorry to read of your recent health challenges. Even though we've never *met* please know how much I am thinking of you and imagining you feeling well!
Prayers and hugs from afar,
Posted By: ValsMum Re: Adenocarcinoma - 05/01/12 11:59 PM
Dear Michelle,
I hope the hearing goes well tommorrow, and more importantly I hope the surgery goes perfectly. You're in my thoughts and prayers. Love,Sheri
Posted By: ChaCha Re: Adenocarcinoma - 05/02/12 12:06 AM
Michelle,
You know we are all pulling for you--"regular" posters as well as
"lurkers" like me. I hope your surgery goes well, and that that you have as easy a recovery as possible. You have a TON on your plate right now, just take it one thing at a time, one day at a time, one moment at a time. Try to keep your mind focused on healing, and feeling better.
Posted By: Winter Re: Adenocarcinoma - 05/02/12 01:41 AM
Michelle: Thinking about you tonight and hope all goes well with your surgery tomorrow. You will be in my prayers.

Shari
Posted By: fonzy Re: Adenocarcinoma - 05/02/12 03:45 AM
Hi Michelle.Sorry to hear of your health problems...from reading these post you have a great attitude and that is going to help tremendously,ill be praying for you also
Posted By: Langers Re: Adenocarcinoma - 05/02/12 11:38 AM
I have just read this. I am so sorry for your news. I hope your surgery goes well. Sending you my best wishes.
Posted By: saltire Re: At a total loss... - 05/02/12 07:28 PM
never managed to read through all of the replies ......but your gum problem is more than likely to be PERIODONTAL disease

http://www.nidcr.nih.gov/OralHealth/Topics/GumDiseases/PeriodontalGumDisease.htm

i have it myself and the only way it can be managed is by a huge effort in dental hygiene practice
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