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Highlights
Creating an all-women’s IPA
workshop
Ovarian cancer screening test
Coping with “someone is waiting
for me in the bathroom when I enter a stall”
(a) Personal : You haven't heard from me for a while because of
a few major events: Two weeks ago, I got married for the first time
at the age of 56! (For me, this represents a personal triumph since
I do not think I could have made it to the altar without having
first overcome AP). Secondly, I moved from a condo to a house, and,
lastly, I travelled to Machu Picchu (Peru) & the Galapagos (Ecuador)
during which I successfully peed on airplanes, a train, and a small
boat.
(b) The IPA wants to make an
all-women's workshop happen. Dr. Steve Soifer, IPA Executive Director,
is seriously interested in providing us with this opportunity to
work on AP together. For me - and I think I speak for other women
on this Forum who have participated - attending one of these workshops
helped change the course of my life. Please consider attending,
and stay tuned for details.
A request has been made that we continue to post to the Main Discussion
Board -- at least occasionally -- so we can attract new females.
(c) Important news about ovarian cancer
– ask for a SIMPLE CA-125 BLOOD TEST when you have your next
physical (submitted by a female paruretic)
As all of you know, I have Primary Peritoneal Cancer. This cancer
has only recently been identified as its OWN type of cancer, but
it is essentially Ovarian Cancer. Both types of cancer are diagnosed
in the same way, with the "tumor marker"CA-125 BLOOD TEST,
and they are treated in the same way-surgery to remove the primary
tumor and then chemotherapy with Taxol and Carboplatin. Having gone
through this ordeal, I want to save others from the same fate. That
is w hy I am sending this message to you and hope you will print
it and give it or send it via E-mail to everybody you know.
One thing I have learned is that each of us must take TOTAL responsibility
for our own health care. I thought I had done that because I always
had an annual physical and PAP smear, did a monthly Self-Breast
Exam, went to the dentist at least twice a year, etc. I even insisted
on a sigmoidoscopy and a bone density test last year. When I had
a total hysterectomy in 1993, I thought that I did not have to worry
about getting any of the female reproductive organ cancers. LITTLE
DID I KNOW. I don't have ovaries (and they were HEALTHY when they
were removed), but I have what is essentially ovarian cancer. Strange,
isn't it?
These are just SOME of the things our Doctors never tell us: ONE
out of every 55 women will get OVARIAN or PRIMARY PERITONEAL CANCER.
The "CLASSIC" symptoms are an ABDOMEN that rather SUDDENLY
ENLARGES and CONSTIPATION and/or DIARRHEA.
I had these classic symptoms and went to the doctor. Because these
symptoms seemed to be "abdominal", I went to gastroenterologist.
He ran tests that were designed to determine whether there was a
bacterial infection; these tests were negative, and I was diagnosed
with "Irritable Bowel Syndrome". I guess I would have
accepted this diagnosis had it not been for my enlarged abdomen.
I swear to you, it looked like I was 4-5 months pregnant! I therefore
insisted on more tests. They took an X-ray of my abdomen; it was
negative. I was again assured that I had Irritable Bowel Syndrome
and was encouraged to go on my scheduled month-long trip to Europe.
I couldn't wear any of my slacks or shorts because I couldn't get
them buttoned, and I KNEW something was radically wrong. I INSISTED
on more tests, and they (reluctantly) scheduled me for a CT-Scan
(just to shut me up, I think).
This is what I mean by "taking charge of our own health care".
The CT-Scan showed a lot of fluid in my abdomen (NOT normal). Needless
to say, I had to cancel my trip and have FIVE POUNDS of fluid drained
off at the hospital (not a pleasant procedure, I assure you), but
NOTHING compared to what was ahead of me). Tests revealed cancer
cells in the fluid. Finally, finally, finally, the doctor ran a
CA-125 blood test, and I was properly diagnosed.
I HAD THE CLASSIC SYMPTOMS FOR OVARIAN CANCER, AND YET THIS SIMPLE
CA-125 BLOOD TEST HAD NEVER BEEN RUN ON ME, not as part of my annual
physical exam and not when I was symptomatic. This is an inexpensive
and simple blood test! PLEASE, PLEASE, PLEASE TELL ALL YOUR FEMALE
FRIENDS AND RELATIVES TO INSIST ON A CA-125 BLOOD TEST EVERY YEAR
AS PART OF THEIR ANNUAL PHYSICAL EXAMS.
Be forewarned that their doctors might try to talk them out of
it, saying, “IT ISN'T NECESSARY." Believe me, had I known
then what I know now, we would have caught my cancer much earlier
(before it was a stage 3 cancer).
Insist on the CA-125 BLOOD TEST; DO NOT take "NO" for
an answer! The normal range for a CA-125 BLOOD TEST is between zero
and 35. MINE WAS 754 (That's right, 754!).
If the number is slightly above 35, you can have another done in
three or six months and keep a close eye on it, just like women
do when they have fibroid tumors or when men have a slightly elevated
PSA test (Prostatic Specific Antigens) that helps diagnose prostate
cancer.
Having the CA-125 test done annually can alert you early, and
that's the goal in diagnosing any type of cancer - catching it early.
Do you know 55 women? If so, at least one of them will have this
VERY AGGRESIVE cancer. Please, go to your doctor and insist on a
CA-125 test and have one EVERY YEAR for the rest of your life.
And forward this message to every woman you know, and tell all
of your female family members and friends. Though the median age
for this cancer is 56, (and, guess what, I'm exactly 56), women
as young as 22 have it. Age is no factor.
A NOTE FROM THE RN: Well, after reading this, I made some calls.
I found that the CA-125 test is an ovarian screening test equivalent
to a man's PSA test prostate screen (which Ron's doctor automatically
gives him in his physical each year and insurance pays for it).
I called the general practitioner's office about having the test
done. The nurse had never heard of it. She told me that she doubted
that insurance would pay for it. So I called Prudential Insurance
Co., and got the same response. Never heard of it - it won't be
covered. Iexplained that it was the same as the PSA test they had
paid for my husband for years. After conferring with whomever they
confer with, she told me that the CA-125 would be covered.
It is $75 in a GP's office and $125 at the GYN's. This is a screening
test that should be required just like a PAP smear (a PAP smear
cannot detect problems with your ovaries). And you must insist that
your insurance company pay for it.
PLEASE TAKE A MOMENT TO SEND THIS OUT TO ALL THOSE YOU CAN. BE
IT MALE OR FEMALE, IT SHOULD NOT MATTER, AS THEY CAN FORWARD IT
ON ALSO TO THOSE LOVED ONES THEY KNOW.
2. Question of the Season
How do you deal with "Someone's Waiting For Me" when
entering a stall? (Remember, in order to respond to everyone, just
click "reply all").
There has been some discussion on the Main Board recently about
time pressure issues. For me, feeling pressured for time, coupled
with my negative self-talk about the consequences of not being able
to pee, crippled me when I entered a stall. I felt like I was going
crazy!!! In the IP A workshops, I learned - and finally understood
- the concept of "staking your ground" - I had the right
to spend as much time as I wanted and needed in a stall. And furthermore,
I learned not to care about what anyone else might be thinking!
By changing my thought patterns, combined with lots of practice
and support from other AP sufferers, I gradually overcame my battle
with AP.
Some reflections from other AP sufferers on this subject: (taken
off the IPA Main Board)
First Response
For me, time pressure is a major issue. While doing temporary work
a few weeks back I would sometimes need to travel 50 or 60 miles
with a co-worker. So, naturally I wanted to void before leaving
the office. While I could always use the office restroom under other
circumstances, as the time for departure came close I found it impossible.
And in fact, resorted to the cath. "So I could be ready ON
TIME." Those are the thoughts that raced through my mind.
I know the time-waiting issues are really paramount for me. I feel
them to some extent even when I'm using a copy machine and a couple
of people are waiting in line in back of me.
I don't know where I learned to subordinate my right to take my
time doing a task to others, but it is clear that somewhere along
the line I learned precisely that.
I suspect it may be something as subtle as the socialization and
learning that go into teaching politeness. "Stand up and let
the lady (obviously written by a man!) take the seat on the bus.
" "Let that old man go ahead of you." "Hurry
up, you're taking up their time. "
These are thoughts that are ingrained in my being and contribute
at least something to the paruresis.
I'd guess that these above admonitions came from well meaning parents,
grandparents, aunts, uncles, and innumerable teachers who all meant
well. They wanted me to be polite.
Second response: Someone suggested just ''telling people that you
have difficulty urinating and it takes you awhile. You don't need
to explain why, they will just think you have a medical problem,
which is true and no reason to be ashamed. I've used this method
before and it works. It takes the time pressure off of you
and in this day and age of political correctness, they probably
won't dig deeper.
Third response: For some reason I do care what people think, and
it makes me nervous and starts the problem.
Consciously thinking "I don't care", really doesn't work
for me. What might help is if! could "not care" subconsciously,
and consciously think of something else, or just doing my business.
How can we change/condition our subconscious to "not caring"?
Here's how it goes for me sometimes: I gotta go.
Makes me nerv
Maybe if! wait the urge will pass, it's not that bad.
I better go now just in case I have a problem, it will give me time.
Wonder if it's a large bathroom or small bathroom?
Makes me nervous.
Nobody else has gone?
Will anybody else get up if I do?
Makes me nervous.
Get up walk to bathroom.
Wonder if anyone's in there?
Makes me nervous.
Wonder if! will have a problem?
It makes me nervous.
I'm in the bathroom.
I can't go.
Now I know 1 have a problem.
Will I take longer than a normal person?
How long have I been in here?
Makes me nervous.
I can't go.
Will the person next to me notice?
I don't know.
Shoot, someone's waiting for me, will they walk in?
It makes me nervous.
1 can't go.
Someone else walks in.
Makes me nervous, startles me.
1 can't go.
Someone I know walks in.
I should be gone before they are finished.
Makes me nervous.
Do I leave and come back again?
I'll look stupid.
I still can't go.
No more liquids for me.
Shoot, I'm an idiot, this is not funny.
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