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Sandy
March 15, 2001 was the worst day of my life! I had the classic
symptoms of IBC - swelling, redness, itching, burning, nipple
retraction and swelling under the arm.
About 25 years ago after having my son, I had itching of the right
nipple and was treated for contact dermatitis - the one that I
had the IBC in!
The first symptom a month before my diagnosis, now that I look back,
was soreness under the arm. I thought it was from my
fibromyalgia that was diagnosed in 1997. I had never heard of IBC.
After a week of antibiotics which did not change anything, I
ended up in the hospital with high temp and fever. I had a
biopsy done which showed stage 111b, IBC.
My surgeon was not good at bedside manners and therefore, I was
nearly scared to death!!! He told me I had no long term survival
and what time I had would not be good.
Not only does the patient suffer from this terrible disease but
my family, friends and everyone.
He kept repeating it as if I did not get it the first time.
Well, you guessed it, I cried for a year as that was all I could
hear. He really brought me down.
During that year I had anxiety
attacks at night and had to take medication for it, and all I
could think of was how did I want to end this life if I had such
a short time.
My mind was racing. I was on such a roller coaster ride. At
first I did not want any treatment. My knowledge at that time
of chemo was horrible because I had worked in a hospital for 24
years and saw the sick ones and not the surviving ones on the
outside.
I had the chemo to shrink the breast, surgery which involved a
right modified radical mastectomy with a skin graft to the chest wall, 44 positive nodes, and left
simple mastectomy. I was ER/PR negative, Her2 positive.
My scans were all clean, PRAISE GOD! That was my only hope!!
Well, it's a long story, and I will keep it short by saying I
started radiation, but the skin mets which were there in the form
of a rash around the graft area (no one told me what they were)
started to spread so I went back into chemo.
I have been in and out of chemo for the skin mets. THANK GOD they
are not life threatening! Am on continuous herceptin. THANK GOD
for that drug.
My quality of life has been very good with many breaks from
chemo. I have beaten the odds of long term survival. This is
2006.
I THANK MY LORD every day for giving me a good life, wonderful
friends (many are new ones through support groups) as well as a
supportive husband, a wonderful oncology of nurses that are
like a family and a caring and compassionate oncologist who
enjoys hearing about my active life and the research I do.
I live in a rural State with no research centers. I am very busy
helping others with phone support, volunteering in church, and
still going for many appointments.
I am constantly doing
research. THANK GOD for the computer!! See I do have lots of
praises.
Yes, I would like to see my initial surgeon and tell him never
to do this to any other patients but give them some kind of hope.
He is no longer in the area, and I now have a wonderful woman
surgeon. I get 6 month follow ups with scans.
I hope my story gives others hope. I don't dwell on the past but
share it with others to give them hope. Never give up because I
almost did that first year, and it was a year of my life wasted.
I value every minute as being precious and am living life to the
fullest. I do take good care of myself - trying to eat well,
exercise, get plenty of rest, stay around positive people, pray
a lot.
My e-mail is sanhenry@prexar.com If anyone needs an IBC buddy,
please e-mail me, and I will give you my phone number as well.
Sending everyone a smile, and most of all keep the faith.
Sandy
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