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GF Lover

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GF Lover Rising Star
GF Lover
Posted

I have a few updates on my cancer.  I'm having 2 wide excision done Friday on 2 dysplatic Nevis.  Then next Tuesday I have scans done, chest, gut and pelvis.  My chest scan in December showed a 4mm Spot in my lung.  This is one that scares me.  I've also been having neurological issues that seem to be getting worse.  My brain is selecting some kind of word for me in a sentence, that doesn't make sense.  Forgetting info five seconds after I've been told.  My beautiful handwriting is suffering.  I been mispelling simple words.  and I am having balance issues. I gonna ask for a head ct scan too.  My depression has been very heavy. My anxiety is as high as I've ever experienced and I am totally fatigued and couch bound.   The waiting for these procedures on Friday and then the scans on Tuesday is debilitating me and my appetite is especially very low.

 

Please keep me in your thought if you can. I truly appreciate it

 

Thank you

 

Colleen

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bartfull Rising Star
bartfull
Posted

Lot's of heartfelt prayers coming your way. (((((HUGS)))))

1desperateladysaved Proficient
1desperateladysaved
Posted

Hi Colleen,

 

Oh, I hope you will feel better soon.  I have been wondering where you are.  The Lord hasn't left you and can carry.  When you feel the couch under you, you can feel you are being carried.  Hang on, or just be held on to.

 

***  Get well

 

Diana

mushroom Proficient
mushroom
Posted

Colleen, you are being carried lovingly in our thoughts wherever you go.  We are all pulling for you.  I know the waiting is excruciating ~~ try some celiac disease's with beautiful imagery and music to transport you away from troubling thoughts.  We are here for you whenever you need us.

kareng Grand Master
kareng
Posted

Colleen, you are being carried lovingly in our thoughts wherever you go.  We are all pulling for you.  I know the waiting is excruciating ~~ try some celiac disease's with beautiful imagery and music to transport you away from troubling thoughts.  We are here for you whenever you need us.

 

 

You could try some compact discs or an Ipod, too!  (love the helpful nature of this site!)

 

Good luck with the procedures. Sending positive thoughts! 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Colleen

Sending positive thoughts, hugs and prayers from across the pond.

Wishing you all the support you need

Mw x

IrishHeart Veteran
IrishHeart
Posted

Oh sweet girl, I have just arrived home from being on the road for 3 days and I knew your tests were fast approaching and you've been heavily on my mind. 

 

You have every right to be concerned, but being anxious will just drain you. Think only positive thoughts, girlfriend!!. 

 

You know you always have my loving thoughts and positive energy sent your way every morning. (I always send up thoughts for

all the celiac warriors I know and love  ;))

 

You know you can call me anytime, if you just want to vent.  

xx 

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GF Lover Rising Star
GF Lover
Posted
  • Author

Thanks to all of you.

 

 Have been listening to my relaxation music and chakra meditations.  It's soothing and the only thing keeping me sane.  Positive thoughts are difficult.  I'm having nightmares and such.  

 

I really appreciate you thoughts and prayers.  

 

Colleen 

Gemini Experienced
Gemini
Posted

My love and healing thoughts are being sent your way, Colleen.  You will be in my thoughts tomorrow so please hang in there.....I'm rootin' for you!  Please keep us updated when you are able.  Best of luck tomorrow!

GottaSki Mentor
GottaSki
Posted

Oh Colleen - was wondering where you have been - I've had those same neuro symptoms and is beyond difficult to be possitive while they are happening - so for now we will carry your hope for you until you are ready to pick it back up.

I framed your beautiful Christmas card and will send loving healing thoughts each time I pass it.

:)

GFinDC Veteran
GFinDC
Posted

I hope everything goes well for you Colleen.  Our church group said a prayer in the name of Jesus for you last night.  Hang in there and remember we are thinking of you.  :)

nvsmom Community Regular
nvsmom
Posted

(((HUGS))) Best wishes to to.  I wish you only the very best.

GottaSki Mentor
GottaSki
Posted

Hi Colleen-

 

Just in case you can read these, but not post right now -- I am still thinking powerful healing thoughts for you and will not stop.

IrishHeart Veteran
IrishHeart
Posted

Me too!! Me too!!! 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

And me x

GF Lover Rising Star
GF Lover
Posted
  • Author

I'm beginning to feel like a like a scare crow.  New incisions are 3" diaganol one on back and 3" vertical one on right thigh.  These go wonderfully with the 2 monsters on the left leg.  The back one is kinda uncomfortable but they are healing well and I get to shower today, hooray.   Get this, I actually watched the doc do the one on my thigh.  They propped the bed up for me.  I couldn't watch all the numbing stuff going on, hurt.  After that it was so surreal the cutting, pulling, stitching.  Yes, I'm not in my right mind, but was really cool. Path reports due Friday 

 

See what you guys do for me?  I'm much calmer now and ready for all the scans tomorrow, whatever the outcome.  I get the results same day from the doc so ill let you know as soon as I can, or let IH know.

 

Love you guys

 

Colleen 

GottaSki Mentor
GottaSki
Posted

Thanks for the update -- glad you get to shower -- always feels fantastic after withheld for a few days.

 

Prayers for good news from the scans tomorrow continue :)

IrishHeart Veteran
IrishHeart
Posted

C

Watching your own surgical procedure is about as cool as it gets. (I know, I'm a dork, but I like that stuff. Fascinating) And scars are sexy, IMHO. I've got 5  and I think, well, battle-worn maybe, but still kicking.

. 

You're doing a great job of getting all this done and remaining steady and cool....one more hurdle and then, they will leave you be for a bit.

Hang tough. Were here ----and we're sending love and moral support.

xx

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Glad to hear it all went well today, will have fingers crossed for those scans.

 

I saw quite a lot of my 2 c-sections, which was quite interesting. Strangely fascinating, though somewhat disconcerting.

 

Your fighting spirit is amazing (even if it doesn't always feel like that to you...)

 

Mw

IrishHeart Veteran
IrishHeart
Posted

 I checked on Colleen today and she replied. Our girl is one brave cookie. I asked her permission to share with the gang here (because I know you are all concerned) and she said:

 

"Go ahead and share. I want them to know what they mean to me." :) 

 

She wrote:


"All that support you guys have given is working.  Here's the breakdown.

The nodule in my lung has stayed stable, great news, but I do have a new one that's small and we will watch.  I have a scattering of spots on my liver but not diagnostic of anything at this point, also great news, and again, watch and wait.   My pancreas, gallbladder, kidneys all look great, thankfully.  I get the pathology on the two excisions this Friday, should have clear margins, no worries.   I am getting an MRI of my brain tomorrow because of some neurological and speech type issues.  But I think that may have come on because of the stress, crossing fingers.  Will be a week before I get those results.

So I think overall things look real good.  I'm stable and that's what counts.  I am really exhausted from everything and am gonna get lots of rest.

I'm really looking forward to getting things back to some kind of normal.  The support from you guys is getting me thru all this and I'd be lost without it.  I also look forward to getting back to contributing to the forum, if that's possible,lol.

I love you guys.
Colleen" 

GottaSki Mentor
GottaSki
Posted

Yay Colleen!!!

 

You rest up and jump in when you are ready -- stable sounds promising to me -- we will keep the the faith that the MRI and scan results are all good news.

 

Thanks for the update Irish :)

Loey Rising Star
Loey
Posted

I have a few updates on my cancer.  I'm having 2 wide excision done Friday on 2 dysplatic Nevis.  Then next Tuesday I have scans done, chest, gut and pelvis.  My chest scan in December showed a 4mm Spot in my lung.  This is one that scares me.  I've also been having neurological issues that seem to be getting worse.  My brain is selecting some kind of word for me in a sentence, that doesn't make sense.  Forgetting info five seconds after I've been told.  My beautiful handwriting is suffering.  I been mispelling simple words.  and I am having balance issues. I gonna ask for a head ct scan too.  My depression has been very heavy. My anxiety is as high as I've ever experienced and I am totally fatigued and couch bound.   The waiting for these procedures on Friday and then the scans on Tuesday is debilitating me and my appetite is especially very low.

 

Please keep me in your thought if you can. I truly appreciate it

 

Thank you

 

Colleen

 

I'm sorry I haven't responded on the site sooner. I've been offline and following on my Kindle (which doesn't seem to let me reply to email or on the forum). You have been in my thoughts and prayers since your first post and continue to be. You're on my list of heroes and heroines. Please know we're all pulling for you!

 

Sending positive energy, healing (((hugs))) and love,  :wub:  :wub:

Loey

nvsmom Community Regular
nvsmom
Posted

I hope you are feeling better and the tests stay looking so good.

GF Lover Rising Star
GF Lover
Posted
  • Author

Hey guys.

 

Pathology from both excisions is great.  Just scar tissue left and no nasty cancer cells!!  I'm a seriously happy camper.  MRI results should be in sometime this week but I'm pretty confident that all will be good, fingers and toes are all crossed.  I got pretty run down in the last few weeks so I'm getting better from that and I'm feeling good.

 

I hope you all know that your support is getting me thru this and I can't thank you enough, but I will try :)

 

Hoping your all feeling well,

 

Colleen 

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Good pathology = good news then!

 

This is really fantastic, it sounds like you can focus all your enrgy on healing for the next few weeks.

 

I am so pleased to hear things are going well, I have been thinking of you often

 

Hugs

Mw x

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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