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Cancer, Chemo, Gluten Ughhh


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#46 IrishHeart

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Posted 24 June 2011 - 06:06 AM

Thanks for the replies love2travel and irishHeart. My hotmail address is irish641 so you can guess I'm an Irishman around here too. I do have a lot of support here and I know I will get through this test.

It is an Endoscope with a fiber optic on the end that will travel up into the bile duct to see how invasive the tumor is. Now since I decided to reside in the "house of denial" this past week I also chose the bedroom marked "no tumor found, no surgery needed"........

If wishing and praying makes it so why not throw a penny in the fountain and spend time on my knees. Not exactly in that order mind you. God laughs at my penny throwing and allows me my silliness..at least in my pea brain he does.

That photo of myself was recently taken at our church yard sale which is why I'm holding up a teddy bear. I needed a prop, I hate to be photographed...lol

Have a great day you guys
Fran



I hate to be photographed as well. (hence my lack of one on here )...This is also tough since both hubby and I are avid photographers and he is always insisting I get in the picture. arrgh! :rolleyes:

Fran, I do not think you are necessarily in denial--perhaps you are just being incredibly optimistic?! There's nothing wrong with that, hon. Acknowledging the fear is important and being prepared for all outcomes is essential, yes, but if you wish to remain wildly optimistic, I think that's better for your spirit, don't you!? Just my humble opinion.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#47 fran641

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Posted 27 June 2011 - 08:08 PM

I'm still a little groggy but really wanted to catch up guys up. First the prepping was a lot easier thanks to the prayers and Lorazepam. I was still out when the doc talked to my family but this is what we know. The cancer is not in the ducts. There is a mass in my pancreas that is closing the ducts and why he reinstalled a stint. He has gone as far as he can with testing so now it's on to Shands Hospital for different tests or just surgery.

I will call the docs office tomorrow and find out how fast I can get to Shands. I may have to have a temper tantrum to get this moving along. I can't bear the lack of a definite diagnosis much longer. In my core I know this is in God's hands but God knows my weaknesses. Thanks for all your good thoughts and prayers.

Fran
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Fran

Gluten free since Dec. 2008

New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

#48 nik95670

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Posted 27 June 2011 - 11:24 PM

Fran,
I just found this string an found myself in tears reading through all the posts. You are brave and humble and with a great spirit and sense of humor. I think I needed to read all thi to stop feeling sorry for myself and what little, endurable pain I'm in. If you can handle all that then I can handle this celiac disease! Thank you for keeping me tough. My dad always said "Keep your chin up, God will never make us go through anything we aren't strong enough to handle."
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#49 IrishHeart

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Posted 28 June 2011 - 05:09 AM

Fran,
I am happy yo hear you got through the procedure and the ducts are clear. I know you were worried about that--but see, your warrior princess spirit pulled you through! That's good news for you, yes?
Okay, onto the next step.
If I were you, I would be very insistent you get things going. You have every right to want to resolve this immediately.
You can do this!
Prayers, well wishes, all my good thoughts!
As "nik" says in the post above, whether you know it or not, you are inspirational!!
(((HUGS)))
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#50 lynnelise

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Posted 28 June 2011 - 06:31 AM

Just saw this post and wanted to say I hate that you've been through so much! I'll be praying you can get on to the next stage of treatment without delay!
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#51 love2travel

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Posted 28 June 2011 - 07:35 AM

I'm still a little groggy but really wanted to catch up guys up. First the prepping was a lot easier thanks to the prayers and Lorazepam. I was still out when the doc talked to my family but this is what we know. The cancer is not in the ducts. There is a mass in my pancreas that is closing the ducts and why he reinstalled a stint. He has gone as far as he can with testing so now it's on to Shands Hospital for different tests or just surgery.

I will call the docs office tomorrow and find out how fast I can get to Shands. I may have to have a temper tantrum to get this moving along. I can't bear the lack of a definite diagnosis much longer. In my core I know this is in God's hands but God knows my weaknesses. Thanks for all your good thoughts and prayers.

Fran


Fran, you are amazing to go through all this and have the presence of mind to inform us on what is happening. I'm SO glad the prepping was better than you expected. We've been praying for that! Glad that cancer is not in the ducts.

You are right - this IS truly in God's hands, thankfully - the best hands you can get! :D But I also believe you need to push the process along if you can as others have said. Man, you are one courageous woman. I admire your fortitude!

Will continue to pray that this happen quickly.
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#52 fran641

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Posted 28 June 2011 - 11:40 AM

I AM SO HAPPY...that sounds nuts but the GI Oncology Department of Shands Hospital called today and is seeing me tomorrow afternoon. YEAH They will get to the bottom of all of this quickly and I can be over and done with this.
I was supposed to start an IV maintenance therapy (every other month for 2 yrs.) for the lymphoma in May when that last PET scan came back with a problem. If all of this "stuff" with the pancreas gets cleared up I can get on with the other treatment that will hopefully keep the lymphoma at bay for a while. The form of Lymphoma I have is follicular Non Hodgkin and is not curable but it is treatable as I go in and out of remission.

I can't thank you all enough for all your support and good wishes. I did tell the nurses my one and only joke I know while they were trussing me up like a turkey. -an old lady wanted to kill herself but wanted to be sure to succeed so she called her doctor and asked where exactly is my heart located? He said directly below your left breast. She shot herself in the knee----

Have a laugh today or at least don't be too offended.
xo Fran
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Fran

Gluten free since Dec. 2008

New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

#53 IrishHeart

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Posted 28 June 2011 - 01:11 PM

Oh Fran,
:lol: --I laughed at your joke...thanks!
You're a real "pistol"--as we used to say in Boston!!

This IS great news--get in there, get it going and GET WELL!
Thanks for letting us know.
Prayers at work? maybe!! good!! Sometimes, when things work out all right, I don't question it, I just whisper.. Thank you. ;)
best luck tomorrow, hon!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#54 fran641

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Posted 28 June 2011 - 02:10 PM

Irish, glad you had a laugh today.

I do believe that prayer does work and did say "thank you" right away. All the asking needs to have my thanks you's attached!!!! :rolleyes:

Fran
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Fran

Gluten free since Dec. 2008

New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

#55 love2travel

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Posted 28 June 2011 - 02:14 PM

I AM SO HAPPY...that sounds nuts but the GI Oncology Department of Shands Hospital called today and is seeing me tomorrow afternoon. YEAH They will get to the bottom of all of this quickly and I can be over and done with this.
I was supposed to start an IV maintenance therapy (every other month for 2 yrs.) for the lymphoma in May when that last PET scan came back with a problem. If all of this "stuff" with the pancreas gets cleared up I can get on with the other treatment that will hopefully keep the lymphoma at bay for a while. The form of Lymphoma I have is follicular Non Hodgkin and is not curable but it is treatable as I go in and out of remission.

I can't thank you all enough for all your support and good wishes. I did tell the nurses my one and only joke I know while they were trussing me up like a turkey. -an old lady wanted to kill herself but wanted to be sure to succeed so she called her doctor and asked where exactly is my heart located? He said directly below your left breast. She shot herself in the knee----

Have a laugh today or at least don't be too offended.
xo Fran


Your relief is palpable and optimism contagious. I am SO pleased and thrilled for you! And your joke is cute. :)

My aunt was diagnosed with follicular NH nine years ago and is still working FT as a nurse. So, you can do this!! And I'm not just saying that...
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#56 IrishHeart

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Posted 28 June 2011 - 04:35 PM

Irish, glad you had a laugh today.

I do believe that prayer does work and did say "thank you" right away. All the asking needs to have my thanks you's attached!!!! :rolleyes:

Fran


I laugh every day, Fran...no matter how dark it has ever been in my life--I think humor saves our butts and our sanity, don't you?? :)

I should be more specific...hope you don't think this weird, but when I whisper my thanks, it's to my beloved Dad for whatever he does "up there" on my behalf with the "Big Guy" :D I do " plead my case' directly to God when I am in need, but I figure He is quite busy with more important concerns than mine and so, it helps to have an "inside man". :)

Now, hopefully that made YOU smile. :)

Oh Fran, I do admire your spunk...I am really prayin for ya, hon!!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#57 fran641

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Posted 28 June 2011 - 06:00 PM

Irish, I don't think it's weird to talk to your dad and give thanks for his intervention. Both my parents are gone and our house number was 506. Whenever I see that number on a clock, and it is often, I always talk to both of them and ask them to intercede on behalf of my family. Many years after they passed away I mentioned that to my little sister and she burst out laughing. She has done the same thing since they died.

Life is too short to not have a sense of humor. My oncologist (lymphoma doc) must have had his funny bone removed at birth. I often made remarks that just flew over his head. It would make me giggle when he didn't have a clue what I was saying. ;)

Take care,
Fran
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Fran

Gluten free since Dec. 2008

New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010

#58 IrishHeart

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Posted 28 June 2011 - 06:11 PM

Irish, I don't think it's weird to talk to your dad and give thanks for his intervention. Both my parents are gone and our house number was 506. Whenever I see that number on a clock, and it is often, I always talk to both of them and ask them to intercede on behalf of my family. Many years after they passed away I mentioned that to my little sister and she burst out laughing. She has done the same thing since they died.

Life is too short to not have a sense of humor. My oncologist (lymphoma doc) must have had his funny bone removed at birth. I often made remarks that just flew over his head. It would make me giggle when he didn't have a clue what I was saying. ;)

Take care,
Fran



Ohmygosh, Fran LOL! when I see 6:12 on a clock --I think of my Dad (his birthday) !! so I get what you are saying!

Keep your sense of humor, Fran--it is obvious it helps you and that is a very good thing!
G'night! Best luck tomorrow. You are in my thoughts!
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#59 cyberprof

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Posted 29 June 2011 - 09:10 AM

Fran, I'm late to the party and I didn't have time to post last night but I'm thinking good thoughts for you today.
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Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

#60 fran641

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Posted 30 June 2011 - 03:15 AM

Here is where things are today. Yesterday I had a CT scan at Shands and met the surgeon. While we were discussing the whipple surgery that would likely be done next Thursday the doc received a phone call. It was the GI doc from Tallahassee calling to let him know that there was one biopsy in the lab that would not be back for one week. It was a test for primary pancreatic lymphoma. So the surgeon will wait for that biopsy because if it is PPL it can be treated with chemo and radiation. The 3 of us (hubby, daughter and myself) had a sigh of relief at this possible option. With the holiday weekend involved this may slow things down with the labs. I'm not sure why I would relapse in 5 months, does that mean it's a more aggressive form of lymphoma? I'll be curious to see.

I can do lymphoma, I know that beast and I can do chemo and radiation. Looking at the alternative surgery I am really praying for the PPL.

The usual pancreatitis has kicked in from the last scope so I'll be glad for the break in docs and back to jello and icees.

So onward we go and I so appreciate all your prayers.

xo Fran
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Fran

Gluten free since Dec. 2008

New food sensitivities rear their ugly heads as time goes on.
Diagnosed with follicular Non Hodgkin Lymphoma Sept. 2010


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