Re: Upsetting Update on Me

October 22, 2008

Genevieve, what a roller coaster you have started upon. I had a friend pass

away in June from complications of breast cancer, who had the biggest and

best advice for me as I embarked on my own personal roller coaster of both

physical and mental health. She used to make me say to myself, however bad

it got, " this too shall pass " . As I lay in my bed in the dementia unit last

night (I'm not demented, but it was the last available bed apparently), I

could still hear her saying " this too shall pass " .

Good luck, and remember we are always here. That's the beauty of the

internet, someone is always awake no matter what time of day, even us from

downunder!

Penny T

October 22, 2008

Genevieve, what a roller coaster you have started upon. I had a friend pass

away in June from complications of breast cancer, who had the biggest and

best advice for me as I embarked on my own personal roller coaster of both

physical and mental health. She used to make me say to myself, however bad

it got, " this too shall pass " . As I lay in my bed in the dementia unit last

night (I'm not demented, but it was the last available bed apparently), I

could still hear her saying " this too shall pass " .

Good luck, and remember we are always here. That's the beauty of the

internet, someone is always awake no matter what time of day, even us from

downunder!

Penny T

October 22, 2008

Genevieve, what a roller coaster you have started upon. I had a friend pass

away in June from complications of breast cancer, who had the biggest and

best advice for me as I embarked on my own personal roller coaster of both

physical and mental health. She used to make me say to myself, however bad

it got, " this too shall pass " . As I lay in my bed in the dementia unit last

night (I'm not demented, but it was the last available bed apparently), I

could still hear her saying " this too shall pass " .

Good luck, and remember we are always here. That's the beauty of the

internet, someone is always awake no matter what time of day, even us from

downunder!

Penny T

October 23, 2008

Hi Genevieve,

I know nothing of what your going through and not sure if i've ever

heard of over half the things you have mensioned BUT you are in my

thoughts and I hope that this coming year passes by as quickly as

possible.

>

> Dear Friends,

>

> Yesterday afternoon we got the test results back of a genetic test

> called the `FISH' test that was sent out after my September

> appointment and stent removal. The test is a biopsy and was sent

to

> Mayo by one of my doctors, and wires got crossed; somehow my

> hepatologist never got the message that this test was completed and

> sent out. He ordered this test again this Monday, after my most

> recent ERCP and stent placement, and got a call today asking if he

> really wanted to do this test over. At this point he was made

aware

> that a `FISH' test had already been completed on me, and the

results

> were abnormal.

>

> Now this part I may be wrong about, so bear with me, it's just my

> understanding: This test shows the morphology of chromosomal

> abnormalities, as cells turn from benign to cancerous. My cells in

> this stubborn strictured area that have been a pain in my side (HA)

> for the last year, are on their way to becoming cancerous. One

could

> say this is similar to when I had my colon removed; high-grade

> dysplasia throughout the colon indicated that cells were in the

last

> stages of turning from `abnormal' to `cancerous'; that's what is

> happening in this strictured area in my bile duct right now. This

> has been slightly suspected for some time, but none of my doctors—

> even until 2 p.m. yesterday—truly thought that my situation was

> indicative of cholangiocarcinoma; but we've caught it before it

> became full-blown CCa.

>

> My hospital, Washington University Medical Center and -Jewish

> Hospital in St. Louis is one of three hospitals that participates

in

> an extremely strict protocol for this exact type of situation—Mayo

> Clinic and University of Pittsburgh Medical Center being the other

> two—and given lots of confounding factors, I am a perfect candidate

> to participate in this protocol. We already have a plan in place,

as

> we must move quickly with CCa.

>

> Within the next two to three weeks I will go in for an exploratory

> laproscopic surgery to be certain that there is no visible cancer

> anywhere in my abdomen, except for the strictured area. We will

also

> biopsy the surrounding lymph nodes, and expect these studies to

come

> back clean. I will then see a fertility specialist to harvest and

> freeze my eggs to preserve future fertility. As soon as this is

> completed I will undergo chemotherapy and radiation treatments that

> are very specialized and somewhat localized to the bile ducts.

When

> these are completed, another exploratory surgery will take place to

> again confirm that there is no other cancer.

>

> When all of this has been completed, I will be listed for liver

> transplant with top priority (automatic additional points to give

me

> a high MELD score, based on the results of the FISH test and the

> procedures I will be going through). We expect that a liver will

> then become available to me within three to six months time, and I

> will undergo a full traditional liver transplantation with arterial

> reconstruction.

>

> The risks are many, the benefit is life. As you all know,

> cholangiocarcinoma can be very deadly—it is a boogeyman, as my

> hepatologist says. It jumps out of nowhere for most people, and

> those of us with PSC have the `benefit' of knowing that we need to

> watch for this boogeyman. Well, we've found him, in my case.

>

> I want to tell you more, but I don't know more at this point. I

> didn't come home with any paperwork explaining anything to me, I am

> just expecting `a call' from `someone at WashU' `sometime soon' to

> get this process started. This all happened at 4 o'clock yesterday

> afternoon. My hepatologist and surgeon sat down with my husband

> , myself, and my Dad (an M.D.) and explained it all—mostly to

my

> Dad, in very technical terms, and then dumbed it down a little bit

> for and myself—but then my hep had to leave around 5:30 to

pick

> up his daughter so we had to cut the session short. They had

already

> added my name as to the program for this protocol before talking to

> me about it, knowing the answer would be yes. I hope to know more

> very soon.

>

> For now, I am scared shitless. I have only been processing this

> since about three o'clock yesterday afternoon, and I'm already way

> out of tears. I'm on lots of drugs right now to even me out, or I

> might be having a nervous breakdown; for now I'm just numb. I need

> your support. Please, anyone who has been through this: I need

your

> comments and advice about this process, and your hands to hold as I

> go through this. My doctors said this will be a horrible year for

> me, and to remember that my health, family, and friends are ALL

that

> matter right now; I can pick everything else back up in a year,

when

> this is all just a very bad dream.

>

> Thank you for your support,

> Genevieve

> UC 1983, J-Pouch 1999, PSC 12/07

>

October 23, 2008

Please know that this group can do more than hold your hand and we will give you

always a safe nest to land. " May the road rise up to meet you and the wind be

at your back. "

The prayer warriors are circling the wagons of support around you and yours.

dee

October 23, 2008

Genevieve,

You are in my thoughts, Please keep us updated as you can.

Dawn

> >

> > Dear Friends,

> >

> > Yesterday afternoon we got the test results back of a genetic

test

> > called the `FISH' test that was sent out after my September

> > appointment and stent removal. The test is a biopsy and was

sent

> to

> > Mayo by one of my doctors, and wires got crossed; somehow my

> > hepatologist never got the message that this test was completed

and

> > sent out. He ordered this test again this Monday, after my most

> > recent ERCP and stent placement, and got a call today asking if

he

> > really wanted to do this test over. At this point he was made

> aware

> > that a `FISH' test had already been completed on me, and the

> results

> > were abnormal.

> >

> > Now this part I may be wrong about, so bear with me, it's just

my

> > understanding: This test shows the morphology of chromosomal

> > abnormalities, as cells turn from benign to cancerous. My cells

in

> > this stubborn strictured area that have been a pain in my side

(HA)

> > for the last year, are on their way to becoming cancerous. One

> could

> > say this is similar to when I had my colon removed; high-grade

> > dysplasia throughout the colon indicated that cells were in the

> last

> > stages of turning from `abnormal' to `cancerous'; that's what is

> > happening in this strictured area in my bile duct right now.

This

> > has been slightly suspected for some time, but none of my

doctors—

> > even until 2 p.m. yesterday—truly thought that my situation was

> > indicative of cholangiocarcinoma; but we've caught it before it

> > became full-blown CCa.

> >

> > My hospital, Washington University Medical Center and -

Jewish

> > Hospital in St. Louis is one of three hospitals that

participates

> in

> > an extremely strict protocol for this exact type of situation—

Mayo

> > Clinic and University of Pittsburgh Medical Center being the

other

> > two—and given lots of confounding factors, I am a perfect

candidate

> > to participate in this protocol. We already have a plan in

place,

> as

> > we must move quickly with CCa.

> >

> > Within the next two to three weeks I will go in for an

exploratory

> > laproscopic surgery to be certain that there is no visible

cancer

> > anywhere in my abdomen, except for the strictured area. We will

> also

> > biopsy the surrounding lymph nodes, and expect these studies to

> come

> > back clean. I will then see a fertility specialist to harvest

and

> > freeze my eggs to preserve future fertility. As soon as this is

> > completed I will undergo chemotherapy and radiation treatments

that

> > are very specialized and somewhat localized to the bile ducts.

> When

> > these are completed, another exploratory surgery will take place

to

> > again confirm that there is no other cancer.

> >

> > When all of this has been completed, I will be listed for liver

> > transplant with top priority (automatic additional points to

give

> me

> > a high MELD score, based on the results of the FISH test and the

> > procedures I will be going through). We expect that a liver

will

> > then become available to me within three to six months time, and

I

> > will undergo a full traditional liver transplantation with

arterial

> > reconstruction.

> >

> > The risks are many, the benefit is life. As you all know,

> > cholangiocarcinoma can be very deadly—it is a boogeyman, as my

> > hepatologist says. It jumps out of nowhere for most people, and

> > those of us with PSC have the `benefit' of knowing that we need

to

> > watch for this boogeyman. Well, we've found him, in my case.

> >

> > I want to tell you more, but I don't know more at this point. I

> > didn't come home with any paperwork explaining anything to me, I

am

> > just expecting `a call' from `someone at WashU' `sometime soon'

to

> > get this process started. This all happened at 4 o'clock

yesterday

> > afternoon. My hepatologist and surgeon sat down with my husband

> > , myself, and my Dad (an M.D.) and explained it all—mostly

to

> my

> > Dad, in very technical terms, and then dumbed it down a little

bit

> > for and myself—but then my hep had to leave around 5:30 to

> pick

> > up his daughter so we had to cut the session short. They had

> already

> > added my name as to the program for this protocol before talking

to

> > me about it, knowing the answer would be yes. I hope to know

more

> > very soon.

> >

> > For now, I am scared shitless. I have only been processing this

> > since about three o'clock yesterday afternoon, and I'm already

way

> > out of tears. I'm on lots of drugs right now to even me out, or

I

> > might be having a nervous breakdown; for now I'm just numb. I

need

> > your support. Please, anyone who has been through this: I need

> your

> > comments and advice about this process, and your hands to hold

as I

> > go through this. My doctors said this will be a horrible year

for

> > me, and to remember that my health, family, and friends are ALL

> that

> > matter right now; I can pick everything else back up in a year,

> when

> > this is all just a very bad dream.

> >

> > Thank you for your support,

> > Genevieve

> > UC 1983, J-Pouch 1999, PSC 12/07

> >

>

October 23, 2008

Genevieve,

You are in my thoughts, Please keep us updated as you can.

Dawn

> >

> > Dear Friends,

> >

> > Yesterday afternoon we got the test results back of a genetic

test

> > called the `FISH' test that was sent out after my September

> > appointment and stent removal. The test is a biopsy and was

sent

> to

> > Mayo by one of my doctors, and wires got crossed; somehow my

> > hepatologist never got the message that this test was completed

and

> > sent out. He ordered this test again this Monday, after my most

> > recent ERCP and stent placement, and got a call today asking if

he

> > really wanted to do this test over. At this point he was made

> aware

> > that a `FISH' test had already been completed on me, and the

> results

> > were abnormal.

> >

> > Now this part I may be wrong about, so bear with me, it's just

my

> > understanding: This test shows the morphology of chromosomal

> > abnormalities, as cells turn from benign to cancerous. My cells

in

> > this stubborn strictured area that have been a pain in my side

(HA)

> > for the last year, are on their way to becoming cancerous. One

> could

> > say this is similar to when I had my colon removed; high-grade

> > dysplasia throughout the colon indicated that cells were in the

> last

> > stages of turning from `abnormal' to `cancerous'; that's what is

> > happening in this strictured area in my bile duct right now.

This

> > has been slightly suspected for some time, but none of my

doctors—

> > even until 2 p.m. yesterday—truly thought that my situation was

> > indicative of cholangiocarcinoma; but we've caught it before it

> > became full-blown CCa.

> >

> > My hospital, Washington University Medical Center and -

Jewish

> > Hospital in St. Louis is one of three hospitals that

participates

> in

> > an extremely strict protocol for this exact type of situation—

Mayo

> > Clinic and University of Pittsburgh Medical Center being the

other

> > two—and given lots of confounding factors, I am a perfect

candidate

> > to participate in this protocol. We already have a plan in

place,

> as

> > we must move quickly with CCa.

> >

> > Within the next two to three weeks I will go in for an

exploratory

> > laproscopic surgery to be certain that there is no visible

cancer

> > anywhere in my abdomen, except for the strictured area. We will

> also

> > biopsy the surrounding lymph nodes, and expect these studies to

> come

> > back clean. I will then see a fertility specialist to harvest

and

> > freeze my eggs to preserve future fertility. As soon as this is

> > completed I will undergo chemotherapy and radiation treatments

that

> > are very specialized and somewhat localized to the bile ducts.

> When

> > these are completed, another exploratory surgery will take place

to

> > again confirm that there is no other cancer.

> >

> > When all of this has been completed, I will be listed for liver

> > transplant with top priority (automatic additional points to

give

> me

> > a high MELD score, based on the results of the FISH test and the

> > procedures I will be going through). We expect that a liver

will

> > then become available to me within three to six months time, and

I

> > will undergo a full traditional liver transplantation with

arterial

> > reconstruction.

> >

> > The risks are many, the benefit is life. As you all know,

> > cholangiocarcinoma can be very deadly—it is a boogeyman, as my

> > hepatologist says. It jumps out of nowhere for most people, and

> > those of us with PSC have the `benefit' of knowing that we need

to

> > watch for this boogeyman. Well, we've found him, in my case.

> >

> > I want to tell you more, but I don't know more at this point. I

> > didn't come home with any paperwork explaining anything to me, I

am

> > just expecting `a call' from `someone at WashU' `sometime soon'

to

> > get this process started. This all happened at 4 o'clock

yesterday

> > afternoon. My hepatologist and surgeon sat down with my husband

> > , myself, and my Dad (an M.D.) and explained it all—mostly

to

> my

> > Dad, in very technical terms, and then dumbed it down a little

bit

> > for and myself—but then my hep had to leave around 5:30 to

> pick

> > up his daughter so we had to cut the session short. They had

> already

> > added my name as to the program for this protocol before talking

to

> > me about it, knowing the answer would be yes. I hope to know

more

> > very soon.

> >

> > For now, I am scared shitless. I have only been processing this

> > since about three o'clock yesterday afternoon, and I'm already

way

> > out of tears. I'm on lots of drugs right now to even me out, or

I

> > might be having a nervous breakdown; for now I'm just numb. I

need

> > your support. Please, anyone who has been through this: I need

> your

> > comments and advice about this process, and your hands to hold

as I

> > go through this. My doctors said this will be a horrible year

for

> > me, and to remember that my health, family, and friends are ALL

> that

> > matter right now; I can pick everything else back up in a year,

> when

> > this is all just a very bad dream.

> >

> > Thank you for your support,

> > Genevieve

> > UC 1983, J-Pouch 1999, PSC 12/07

> >

>

October 23, 2008

Genevieve,

Hi! I'm so sorry for all you're dealing with. Please know that you not only

have all our hands to hold but also all our hearts sending love and good wishes

your way!

Sandi in VA

October 23, 2008

Genevieve,

Hi! I'm so sorry for all you're dealing with. Please know that you not only

have all our hands to hold but also all our hearts sending love and good wishes

your way!

Sandi in VA

October 24, 2008

We are sorry all of this is happening to you. We are very glad to hear

this was caught early. Please know you are in our thoughts and prayers.

- and

>

> Dear Friends,

>

> Yesterday afternoon we got the test results back of a genetic test

> called the `FISH' test that was sent out after my September

> appointment and stent removal. The test is a biopsy and was sent to

> Mayo by one of my doctors, and wires got crossed; somehow my

> hepatologist never got the message that this test was completed and

> sent out. He ordered this test again this Monday, after my most

> recent ERCP and stent placement, and got a call today asking if he

> really wanted to do this test over. At this point he was made aware

> that a `FISH' test had already been completed on me, and the results

> were abnormal.

>

> Now this part I may be wrong about, so bear with me, it's just my

> understanding: This test shows the morphology of chromosomal

> abnormalities, as cells turn from benign to cancerous. My cells in

> this stubborn strictured area that have been a pain in my side (HA)

> for the last year, are on their way to becoming cancerous. One could

> say this is similar to when I had my colon removed; high-grade

> dysplasia throughout the colon indicated that cells were in the last

> stages of turning from `abnormal' to `cancerous'; that's what is

> happening in this strictured area in my bile duct right now. This

> has been slightly suspected for some time, but none of my doctors—

> even until 2 p.m. yesterday—truly thought that my situation was

> indicative of cholangiocarcinoma; but we've caught it before it

> became full-blown CCa.

>

> My hospital, Washington University Medical Center and -Jewish

> Hospital in St. Louis is one of three hospitals that participates in

> an extremely strict protocol for this exact type of situation—Mayo

> Clinic and University of Pittsburgh Medical Center being the other

> two—and given lots of confounding factors, I am a perfect

candidate

> to participate in this protocol. We already have a plan in place, as

> we must move quickly with CCa.

>

> Within the next two to three weeks I will go in for an exploratory

> laproscopic surgery to be certain that there is no visible cancer

> anywhere in my abdomen, except for the strictured area. We will also

> biopsy the surrounding lymph nodes, and expect these studies to come

> back clean. I will then see a fertility specialist to harvest and

> freeze my eggs to preserve future fertility. As soon as this is

> completed I will undergo chemotherapy and radiation treatments that

> are very specialized and somewhat localized to the bile ducts. When

> these are completed, another exploratory surgery will take place to

> again confirm that there is no other cancer.

>

> When all of this has been completed, I will be listed for liver

> transplant with top priority (automatic additional points to give me

> a high MELD score, based on the results of the FISH test and the

> procedures I will be going through). We expect that a liver will

> then become available to me within three to six months time, and I

> will undergo a full traditional liver transplantation with arterial

> reconstruction.

>

> The risks are many, the benefit is life. As you all know,

> cholangiocarcinoma can be very deadly—it is a boogeyman, as my

> hepatologist says. It jumps out of nowhere for most people, and

> those of us with PSC have the `benefit' of knowing that we need to

> watch for this boogeyman. Well, we've found him, in my case.

>

> I want to tell you more, but I don't know more at this point. I

> didn't come home with any paperwork explaining anything to me, I am

> just expecting `a call' from `someone at WashU' `sometime soon' to

> get this process started. This all happened at 4 o'clock yesterday

> afternoon. My hepatologist and surgeon sat down with my husband

> , myself, and my Dad (an M.D.) and explained it all—mostly to

my

> Dad, in very technical terms, and then dumbed it down a little bit

> for and myself—but then my hep had to leave around 5:30 to

pick

> up his daughter so we had to cut the session short. They had already

> added my name as to the program for this protocol before talking to

> me about it, knowing the answer would be yes. I hope to know more

> very soon.

>

> For now, I am scared shitless. I have only been processing this

> since about three o'clock yesterday afternoon, and I'm already way

> out of tears. I'm on lots of drugs right now to even me out, or I

> might be having a nervous breakdown; for now I'm just numb. I need

> your support. Please, anyone who has been through this: I need your

> comments and advice about this process, and your hands to hold as I

> go through this. My doctors said this will be a horrible year for

> me, and to remember that my health, family, and friends are ALL that

> matter right now; I can pick everything else back up in a year, when

> this is all just a very bad dream.

>

> Thank you for your support,

> Genevieve

> UC 1983, J-Pouch 1999, PSC 12/07

>

October 24, 2008