A little background. Bärbel was born in East Berlin,
Germany in 1946 and escaped to West Berlin in 1953. We married in
1965 and I brought her to the good old U.S.A. in 1966.
I am 54 years old and had fibrocystic breasts as long as I can
remember,
several biopsies done, always came out OK. My OBGYN doctor decided
after my hysterectomy in '90 for endometriosis that I should have
two mammogram's a year. Nov. '98 and May '99, I had a mammogram
and sonogram, the radiology doctor said that I was doing so well
that I wouldn't have to have another one for a year.
Six weeks
later my right breast seemed swollen, felt hot and looked bruised
and my nipple itched. I also found a lump in my armpit. I called
my doctor, he checked me and said, "That was not there 6 weeks ago",
I agreed. He sent me to a surgeon that day, he suspected cancer
after looking at me, two days later I had a biopsy, he told my
husband
that it was cancer before I came out of the anesthesia.
Then the
days of waiting for the results were maddening. We got the results
on July 12th 1999. The surgeon said that it was IBC, a very rare
cancer! "Well, I asked, "if it was so rare, how many people had
he seen with it?" He said "Two in twenty years, the
first woman waited too long to be seen and died the next day and
you are the other one!!!" Well, hit us in the head with a 2 by
4, talk about shock and scared.
We were supposed to meet with the
only oncologist in town at the same time but we couldn't get an
appointment for 20 days. Well, if I am dying and the tumor is
growing
like crazy, I don't have 20 days to wait. So I called a friend
that just went through breast cancer recently, who her doctor was.
I called the next morning and told them that I had IBC and needed
to be seen, they asked if I could be in Salt Lake City the next
day and off we went, 326 miles from home.
He had all the tests
lined up for us, EKG, cat-scan, chest x-ray, MRI and bone scan.
The next day we saw him again and we started our first chemo.
Four sets every 21 days of Cytoxan and Adriamycin. We bought a
wig that same day. I lost my hair two weeks to the day later and
had all the side effects that came along. Then an MRM with 15 lymph
nodes removed, 10 bad, 5 good. I recouped for a month, then back
to work. Then started 28 radiation's with 6 Taxol during radiation.
I finished the day before Christmas '99, a wonderful present, to
be done with that part of the treatment. Three weeks later in
January
2000 we started with more chemo, six chemo's every 21 days with
Taxotere and lots of neupogen (during the Taxotere I experienced
burning hands and feet and my finger nails and toe nails started
detaching but never fell off. I used Mycelex Tabs for mouth sores
and thrush. I used Zofran during the first chemo for nausea. I
had a hospital stay in February '00 for Neutrophonic fever.)
I developed
a rectal abscess that had to be operated on due to low white cells.
The most pain that I have ever had in my life. That's when I almost
gave up. But a lot of prayers from many, many prople all over the
world and my husbands support got me through it all. The only
negative
that our oncologist told us, was that we had a high chance of
recurrence and to be on the lookout for any symptoms,
he also started me on Tamoxofin 2 times a day for five years.
During
chemo I ate anything that sounded good or would stay down, with
the distorted taste and sore esophagus and upset stomach. I now
have Lymphedema in my right arm and have a Lympho press machine
that I use every day and a compression sleeve and gauntlet. Now,
I live every day to its fullest, like it is my last!
