Part 2: What Has happened

[Guest guest]

Here's the continuation, but I am repeating the greeting.

My Dear Sisters (and maybe a brother or two sprinkled in

among the feminine names!:=)):

THANK YOU so much for your steady and strong support. You

all were perfect. So here's how it went. I am writing this

in two parts because it probably will be long and some women

have mentioned they have trouble with long emails.

So many phone calls, faxes, some doctor's visits, some

tests, much research and communication on the net, I found

myself bloating more and more. My doctor maybe felt

bothered by my frequent communications and said, Look why

not come in to see me so I can look at you. She nicely

allowed me to have an MRI for possible inclusion in the

focused ultrasound trials at s Hopkins.

By the way, I was in email contact with the Harvard project,

the s Hopkins project, and the U. of Mississippi

cryoablation about my symptoms also.

The MRI showed a large grapefruit sized fibroid just like

you see on the net. It gave different dimensions for my

uterus. It had other slightly different details than the

ultrasounds. When I wrote a careful letter to the doctor

about the differences, she just said when people see

" fibroids " that's all they see. It's nothing special; very

ordinary.

Anyway, I saw her in person on Mon., June 3. She said, This

isn't fibroids. Bloating like this isn't from any fibroids

I've seen. Have a CAT scan.

Tues., June 4 had a CAT scan right after work.

Wed., June 5 my precious daughter's birthday, I went to see

Dr. Aden after work. She told me I have ovarian cancer.

The CAT scan showed all this was fluid. My intestines were

not inflamed. I fainted for the first time in my life. I

woke up on the floor vomiting and in shock. I kept saying,

" I need more information " . She called my husband from work

an hour away . When he arrived at 6 or so I was still on

the floor in shock and vomiting up whatever. She explained

to him everything. They were very nice at the office

letting me be on the floor vomiting in shock and keeping

watch. Sent me home with the very effective suppository

which stops the vomiting. I went home and slept.

Thurs. June 6 my husband Kerry and I saw the expert

gynecologist-oncologist surgeon Dr. Freidoon Azizi at St.

ph Hospital in Chicago. He is a friend of my doctor

Aden. He said I had ovarian cancer level 3. I remembered

all the posts from our lists and got his word he would do

all the cutting himself (since he had a trainee in tow). He

assured me and he did. We set the surgery for next Tuesday.

Fri. Mar. 7 I woke having difficulty breathing because the

fluid continued to build and press against my lungs. I paged

the doctor and he set the surgery for the next day on Sat.

Had the 6 hour surgery on Sat. with my husband, son and

daughter always with me. This is so important. So

terrifying otherwise.

My bloating was not normal. I know many are now disturbed

about bloating. Mine was unusual. I will discuss this in a

later email.

Things removed: Both ovaries were hard with cancer. Who

knows why this didn't show up in the three ultrasounds and

MRI I had.

3-4 liters of fluid.

My fallopian tubes of course,

My uterus was almost all cancer,

Get this: the fibroids that showed as the usual large

globes were all cancer! He did say he found a couple of

small fibroids - like 3 cm or something.

My appendix had some cancer. It was removed.

A spot of cancer on my liver was removed. (No cause for

concern on the surgeon's part).

The abdominal cavity had some cancer I think he said.

I actually think there was more, but I haven't his report

yet.

He unraveled and felt every inch of my intestines and found

no cancer.

There are some scattered cancerous nodules on my diaphragm

which he could not remove because they were scattered. He

said chemo would take care of them.

I was fed intravenously for 7 days. My incision is very

well done. It is vertical. I had 32 staples. I had

extreme nausea, so it was difficult to introduce any fluids

and foods. I may make another post about the hospital care.

I will be happy to answer any individual inquiries.

I got home on Sun., June 16 for Father's Day.

The nausea stopped by my eating crackers instead of the

hospital's insistence on clear liquids first, then full

liquids, then food. As a vegan their liquids were

nauseating anyway, but I was getting very dehydrated. I was

so swollen with water retention and I kept begging them to

take me off the IV, but I was dehydrated. The crackers did

the trick! And my healing began!

I have strong arms and legs and they made such a difference.

I could always pull myself up out of bed and to walk.

I had no trouble climbing stairs in my house.

Always a dear family member or friend was with me through

all procedures. There is so much possible terror here.

This is important for when you know anyone facing something

like this. Perhaps my surgery was extra serious, but I have

a very positive mental attitude. I am a Buddhist and that

has helped, but I am a total novice with dealing with pain

like this.

I have suffered many long hours with recovery with getting

my elimination system back in order. But ALWAYS I am

improving. The highs and lows are leveling. I just mention

the suffering in case anyone needs more information.

Now I " ve had at least two nights of scary withdrawal systems

from the loads of narcotics I needed to cope with the pain.

Everything is working out for me. The hospital just sends

you home with no information. It;s amazing.

I have had such support including the letter you have

written me. I am healing well.

Yesterday was the first I went to the computer. I posted

what has happened in much briefer form to my special

teachers list. Not because I wanted more sympathy but I

wanted to warn women about misdiagnosed ovarian cancer. In

my first 6 replies was a note from a friend who has

fibroids, undiagnosed growths in her body and bloating. She

will get a CAT scan. I gave her my doctor's numbers and

also said if she " just had fibroids " I had lots of resources

to help her. So going " public " with my case is just to help

others - as you all have helped me.

Now I am exhausted and will stop this is too long anyway.

Time for my lasic water retention pill anyway.

Love and more Love,

Carol Berland

[Guest guest]

In a message dated 6/19/02 4:28:23 AM US Mountain Standard Time,

cberland@... writes:

> The nausea stopped by my eating crackers instead of the

> hospital's insistence on clear liquids first, then full

> liquids, then food. As a vegan their liquids were

> nauseating anyway, but I was getting very dehydrated

Carol:

G-d bless you and your family. And it is a wonderful service to share your

story with others.

I do have one question. What is there about being a vegan that causes nausea

from clear and full liquids? Did their IV fluids also cause nausea because

you are a vegan?

Cheryl

[Guest guest]

Dear Carol:

Thank you ever so much for your thoughtfulness and kindness in sharing the

intimacy of your most difficult and shocking experience. It feels like

there may not be english words to convey this experience but I want you to

know I received it, felt it and cried with you. I am greatful that you are

passed through this and are a surviver! I can sence your strength and

sensitivity. Thank you. Please know you are supported in my thoughts and

prayers. Marie

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

> In a message dated 6/19/02 4:28:23 AM US Mountain Standard Time,

> cberland@i... writes:

>

>

> > The nausea stopped by my eating crackers instead of the

> > hospital's insistence on clear liquids first, then full

> > liquids, then food. As a vegan their liquids were

> > nauseating anyway, but I was getting very dehydrated

>

> Carol:

> G-d bless you and your family. And it is a wonderful service to

share your

> story with others.

> I do have one question. What is there about being a vegan that

causes nausea

> from clear and full liquids? Did their IV fluids also cause nausea

because

> you are a vegan?

> Cheryl

Dear Cheryl,

I just adjusted my messages to get them so I may have missed some

questions. I did catch yours. There is nothing about being a vegan

that predisposes to nausea. It's just the following.

I had NO idea what the 'recovery' would be. The only time I was in a

hospital was when I had my tonsils out at age 11 or 12. I even had

my kids at home. So I was entirely unrealistic. I just imagined

lying there and them bringing me chicken broth or something. I

thought I would be thirsty so

before I went in I spoke to the dietary service and told them I was

vegan. I just wanted to avoid having broth given me. I was hoping

for fresh juice.

The thing is anyone going through major surgery has disturbed taste

sensations. Everything they brought me tasted way too salty or way

too sickening sweet. The juice was so flat in taste even though it

says fresh juice. It nauseated

me further. Then dehydration despite the constant drip set in and it

furthered the nausea, so it became a vicious cycle.

I hope that answers what you wanted to know. If a veggie or vegan or

anyone is in the hospital, we can try to bring them fresh tasting

fresh juice.

Love,Carol Berland

>

>

>

[Guest guest]

> In a message dated 6/19/02 4:28:23 AM US Mountain Standard Time,

> cberland@i... writes:

>

>

> > The nausea stopped by my eating crackers instead of the

> > hospital's insistence on clear liquids first, then full

> > liquids, then food. As a vegan their liquids were

> > nauseating anyway, but I was getting very dehydrated

>

> Carol:

> G-d bless you and your family. And it is a wonderful service to

share your

> story with others.

> I do have one question. What is there about being a vegan that

causes nausea

> from clear and full liquids? Did their IV fluids also cause nausea

because

> you are a vegan?

> Cheryl

dear Cheryl,

I just adjusted my messages to get them so I may have missed some

questions. I did catch yours. There is nothing about being a vegan

that predisposes to nausea. It's just the following.

I had NO idea what the 'recovery' would be. the only time I was in a

hospital was when I had my tonsils out at age 11 or 12. I even had

my kids at home. So I was entirely unrealistic. I just imagined

lying there and them bringing me chicken broth or comething. So

before I went in i spoke to the dietary service and told them i was

vegan.

The thing is anyone going through major surgery has disturbed taste

sensations. Everything they brought me tasted way too salty or way

too sickening sweet. the juice was so flat in taste. It nauseated

me further. then dehydration despite the constant drip set in and it

furthers the nausea so it was a vicious cycle.

I hope that answers what you wanted to know. If a veggie or vegan or

anyone is in the hospital, we can try to bring them fresh tasting

fresh juice.

--Carol Berland

>

>

>

[Guest guest]

Dear Carol,

Thanks for your post! Even though I don't " know "

you...I still feel like we all kinda know each other

from this list. It was scary to read your initial post

and I've been wondering everyday how you were doing.

Give your husband a big hug for letting us all know,

what a relief to hear! That was very thoughtful,

especially during I'm sure a very hectic/emotional

time. I'm surprised your on the computer already

and your recovery is going well you have such an

excellent attitude I appreciate you letting us know

about you. My continual prayers for your recovery, and

your family...Philese

__________________________________________________

[Guest guest]

Carol,

Thank you for your detailed email. I think that you have taught all of

us the importance of listening to our own bodies, and fighting doctors

who dismiss our complaints. I am glad to hear that you are on the mend.

Carol Berland wrote:

> Here's the continuation, but I am repeating the greeting.

>

> My Dear Sisters (and maybe a brother or two sprinkled in

> among the feminine names!:=)):

>

> THANK YOU so much for your steady and strong support. You

> all were perfect. So here's how it went. I am writing this

> in two parts because it probably will be long and some women

> have mentioned they have trouble with long emails.

>

>

> So many phone calls, faxes, some doctor's visits, some

> tests, much research and communication on the net, I found

> myself bloating more and more. My doctor maybe felt

> bothered by my frequent communications and said, Look why

> not come in to see me so I can look at you. She nicely

> allowed me to have an MRI for possible inclusion in the

> focused ultrasound trials at s Hopkins.

>

> By the way, I was in email contact with the Harvard project,

> the s Hopkins project, and the U. of Mississippi

> cryoablation about my symptoms also.

>

> The MRI showed a large grapefruit sized fibroid just like

> you see on the net. It gave different dimensions for my

> uterus. It had other slightly different details than the

> ultrasounds. When I wrote a careful letter to the doctor

> about the differences, she just said when people see

> " fibroids " that's all they see. It's nothing special; very

> ordinary.

>

> Anyway, I saw her in person on Mon., June 3. She said, This

> isn't fibroids. Bloating like this isn't from any fibroids

> I've seen. Have a CAT scan.

> Tues., June 4 had a CAT scan right after work.

>

> Wed., June 5 my precious daughter's birthday, I went to see

> Dr. Aden after work. She told me I have ovarian cancer.

> The CAT scan showed all this was fluid. My intestines were

> not inflamed. I fainted for the first time in my life. I

> woke up on the floor vomiting and in shock. I kept saying,

> " I need more information " . She called my husband from work

> an hour away . When he arrived at 6 or so I was still on

> the floor in shock and vomiting up whatever. She explained

> to him everything. They were very nice at the office

> letting me be on the floor vomiting in shock and keeping

> watch. Sent me home with the very effective suppository

> which stops the vomiting. I went home and slept.

>

> Thurs. June 6 my husband Kerry and I saw the expert

> gynecologist-oncologist surgeon Dr. Freidoon Azizi at St.

> ph Hospital in Chicago. He is a friend of my doctor

> Aden. He said I had ovarian cancer level 3. I remembered

> all the posts from our lists and got his word he would do

> all the cutting himself (since he had a trainee in tow). He

> assured me and he did. We set the surgery for next Tuesday.

>

> Fri. Mar. 7 I woke having difficulty breathing because the

> fluid continued to build and press against my lungs. I paged

> the doctor and he set the surgery for the next day on Sat.

>

> Had the 6 hour surgery on Sat. with my husband, son and

> daughter always with me. This is so important. So

> terrifying otherwise.

>

> My bloating was not normal. I know many are now disturbed

> about bloating. Mine was unusual. I will discuss this in a

> later email.

>

> Things removed: Both ovaries were hard with cancer. Who

> knows why this didn't show up in the three ultrasounds and

> MRI I had.

> 3-4 liters of fluid.

> My fallopian tubes of course,

> My uterus was almost all cancer,

> Get this: the fibroids that showed as the usual large

> globes were all cancer! He did say he found a couple of

> small fibroids - like 3 cm or something.

> My appendix had some cancer. It was removed.

> A spot of cancer on my liver was removed. (No cause for

> concern on the surgeon's part).

> The abdominal cavity had some cancer I think he said.

> I actually think there was more, but I haven't his report

> yet.

> He unraveled and felt every inch of my intestines and found

> no cancer.

> There are some scattered cancerous nodules on my diaphragm

> which he could not remove because they were scattered. He

> said chemo would take care of them.

>

> I was fed intravenously for 7 days. My incision is very

> well done. It is vertical. I had 32 staples. I had

> extreme nausea, so it was difficult to introduce any fluids

> and foods. I may make another post about the hospital care.

> I will be happy to answer any individual inquiries.

>

> I got home on Sun., June 16 for Father's Day.

> The nausea stopped by my eating crackers instead of the

> hospital's insistence on clear liquids first, then full

> liquids, then food. As a vegan their liquids were

> nauseating anyway, but I was getting very dehydrated. I was

> so swollen with water retention and I kept begging them to

> take me off the IV, but I was dehydrated. The crackers did

> the trick! And my healing began!

>

> I have strong arms and legs and they made such a difference.

> I could always pull myself up out of bed and to walk.

>

> I had no trouble climbing stairs in my house.

> Always a dear family member or friend was with me through

> all procedures. There is so much possible terror here.

> This is important for when you know anyone facing something

> like this. Perhaps my surgery was extra serious, but I have

> a very positive mental attitude. I am a Buddhist and that

> has helped, but I am a total novice with dealing with pain

> like this.

>

> I have suffered many long hours with recovery with getting

> my elimination system back in order. But ALWAYS I am

> improving. The highs and lows are leveling. I just mention

> the suffering in case anyone needs more information.

>

> Now I " ve had at least two nights of scary withdrawal systems

> from the loads of narcotics I needed to cope with the pain.

> Everything is working out for me. The hospital just sends

> you home with no information. It;s amazing.

>

> I have had such support including the letter you have

> written me. I am healing well.

>

> Yesterday was the first I went to the computer. I posted

> what has happened in much briefer form to my special

> teachers list. Not because I wanted more sympathy but I

> wanted to warn women about misdiagnosed ovarian cancer. In

> my first 6 replies was a note from a friend who has

> fibroids, undiagnosed growths in her body and bloating. She

> will get a CAT scan. I gave her my doctor's numbers and

> also said if she " just had fibroids " I had lots of resources

> to help her. So going " public " with my case is just to help

> others - as you all have helped me.

>

> Now I am exhausted and will stop this is too long anyway.

>

> Time for my lasic water retention pill anyway.

>

> Love and more Love,

>

> Carol Berland

>

>

>

[Guest guest]

Dear Carol,

Reading your post made my heart ache for you. If I

could I would love to give you a hug to let you know

that there are people out here that truly care even

though we don't know each other.

Thank you so much for taking out time to share you

experience with the women of this group.

Sue

-- Carol Berland wrote:

> Here's the continuation, but I am repeating the

> greeting.

>

> My Dear Sisters (and maybe a brother or two

> sprinkled in

> among the feminine names!:=)):

>

> THANK YOU so much for your steady and strong

> support. You

> all were perfect. So here's how it went. I am

> writing this

> in two parts because it probably will be long and

> some women

> have mentioned they have trouble with long emails.

>

>

__________________________________________________

[Guest guest]

Fran Drescher (the Nanny) has recently released a book called " Cancer

Schmancer " about her experience with ovarian cancer and her multi-year

search for resolution of pain and issues she experienced that were shook off

by doctor after doctor. If I remember correctly, it took her going to 8

different doctors to get to a correct diagnosis. This was enlightening

because it says this can happen to anyone, including the rich and the

famous. It's also humorous -- after all, it is Fran Drescher! Her book

reads like Carol's story and many of the stories here. And while it is

frightening and exasperating that women can be so under-served by the

medical profession, the book also speaks to the importance of persistence

and following your gut in pursuit of a healthy existence.

I'm not on her payroll, by the way, but I am a reader, and I'd recommend

this book.

Kisha

Re: Part 2: What Has happened

Dear Carol:

Thank you ever so much for your thoughtfulness and kindness in sharing the

intimacy of your most difficult and shocking experience. It feels like

there may not be english words to convey this experience but I want you to

know I received it, felt it and cried with you. I am greatful that you are

passed through this and are a surviver! I can sence your strength and

sensitivity. Thank you. Please know you are supported in my thoughts and

prayers. Marie

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

<http://messenger.msn.com>

[Guest guest]

i think she ahd endometrial cancer not ovarian