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Kathy
I was diagnosed in March of 1994 after having experienced
some darting pain periodically in my left breast. It finally became
of some concern to me (I had always had fairly tender breasts,
so at first it did not really bother me), and I went to my GYN.
He was somewhat alarmed and sent me the next day to St. Agnes Hospital
in Baltimore, Maryland to a surgeon. After many tests and probes and needle
aspirations, etc. plus core biopsies, it was determined that I had
IBC and must start treatment post haste.
The 'tumor' tissue took
up 5/6 of my left breast, and there was suspicious tissue in my right
breast. I was diagnosed Stage IIIB.
On April 5, 1994, I began 4 rounds of Cytoxin and Adriamycin, which
began immediately to shrink the large tumor. (I should also add
that there was also some lymph node involvement -- eggsize in my
underarm).
Because the tumor responded so well to initial chemo and because I was in
very good condition physically, I was eligible for an autologous
bone marrow transplant recommended by my primary oncology doctor
at St. Agnes.
She sent me to Johns Hopkins where I was accepted
into the program. I began that in July of 1994 after having a partial
radical mastectomy of the left breast and a simple mastectomy on
the right with no reconstruction (that to come later).
There is an awful lot to do before the BMT begins. A port must be
installed, a stem cell rescue
(SCR) procedure must be initiated, and a plethora of other tests
and procedures and learning experiences must be done. I can honestly
say I cannot remember them all or the order in which they occurred.
The actual HDC began around the end of July in 1994 and took about
8 days of constant 24-hour HDC. For all this time the nurses get
you up every hour on the hour to empty your bladder (fluid is being
pumped into you all the time so you always have to go).
After the HDC, your bone marrow is destroyed, and they must return the marrow
they removed prior to all this to you. This, for me, was the worst
part of the whole damn treatment.
The chemo rarely got me down
or made me sick. (hooray for Ativan). Getting back the bone marrow
was horrendous, at first. It was bad enough that I don't want to do
that again.
After my blood returned to fairly normal counts, I was able to go
home to get back my strength and stamina. There were some other
issues, like graft versus host disease, which as I understand, they
wanted me to get, and I did slightly, at which time I received
Prednisone, and it subsided.
I began radiation in late September for 35 days. Anyway, aside from
being somewhat tired and out of breath when going up hills, I have
been NED (No Evidence of Disease) ever since.
I went back to work about 2 weeks after I got
home from the BMT. I took aerobics (and still do step aerobics)
and am very active.
The only problem I have now is that there is
some lymphedema in my left arm that drives me crazy and as of today
appears to be getting worse. I am calling about it today because I
need some help.
I hope this will help someone. It may seem a little disjointed,
but it is really hard for me to remember everything about my
treatment
without getting out all my papers and going through it all again.
If anyone needs to contact me, please feel free.
Take care,
Kathy
Kakabee3@aol.com
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