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Old 05-03-2004, 11:49 PM   #1
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My Story - Eleanor

After 2 years I am finally adding my story to this site.
I was dx in Jan 2000 with infiltrating lobular cancer at the age of 43. Had masectomy on left side in Feb. Infiltrating lobular carcinoma, 4 out of 10 postive nodes, ER/PR neg, strong Her2 3+ pos. The onc I was referred to told me I was dealing with a monster"". NOT what my husband and I wanted to hear. Started 4 rounds Adrymiacin" followed by 5 rounds taxol then 5 weeks radiation. Had hip pain in Jan of 2002 that would come and go. Finally had the courage to have tests done dx bone mets in March of 2002. Spots on spine hips " ribs and skull. I was told by my onc ""we'll do everything we can to keep you as comfortable as possible"".
WHAT???????????? Thought he was talking to my grandmother. IT COULDN'T BE ME!!!!
Needless to say I was hysterical. I was put on herceptin with the tax/carb combo. Tumor markers were 62 and 17" not extremely high. Saw immediate results but began losing the use of my left arm. Tumor markers were coming down but some of the stubborn ones were continuing to grow. A tumor on my spine was putting pressure on the nerves to my arm and it was getting weaker and weaker. That meant 4 weeks of radiation to the cervical spine (horrible experience) but it worked. Then in August confirmed increase in tumors on left ribs so more radiation. In Sept. it was determined I was allergic to Carboplatin so I had to be taken off. In Nov. I ended up with plueral effusions and battled that until Jan. 2003 when it was determined I would have to undergo a plueradesis. Hospital for 3 weeks and ended up on oxygen. Took a break from chemo and in April my tumor markers started to go up again. Dr. ordered a PET scan and he told me be prepared for the results.
HAH!!! NEITHER of us was prepared - it came back clean! So he ordered a bone scan and damn it came back normal. WE COULDN'T BELIEVE IT. Anyway stayed on herceptin and Gemzar but by July I was getting very weak. Put in hospital and on massive steroids. Dr's couldn't find anything wrong. Got out went back to work and BAM ended up back in the hospital this time in ICU. No one knew what was wrong. I was very weak and short of breath. Spent 2 weeks there and came home extremely weak. I had lost most of my lung capacity and my heart was weakened. Prognosis looked bad " drs thought the cancer had spread to my lungs and chemo/herceptin was not an option because I had become so weak and they felt my body wouldn't be able to handle the drugs. VERY VERY scary time for us. I was told to consider palliative care and to think about what kind of arrangements I wanted to make. I was very scared and my children and husband did not handle it well.
I decided my condition was no longer ""garden variety"" cancer and went to a cancer hospital where I would have a team of drs and everything would be contained to one area. After months of tests and follow ups (no drugs at this point) it was determined that there was no sign of disease. I was put on herceptin" only to be taken off after a month. My body was rejecting it. This was in Dec. of 2003. In March of 2004 more tests were run and I was still clear so we tried the herceptin again and this time I wasn't having any problems. It is now May 2004. I just had an MRI of the brain (clear) CT of lungs and abdomen (clear) and tumor markers are normal. I just realized this week that I have gone one full year NED. I could not have gone through this alone I had tremendous support from friends and family especially my husband and even more importantly is the Lord himself. I believe that is is him who is in the driver seat and I can't say enough prayers of thanks that I may actually be here to finish raising my children.
I am in my 5th year of living with cancer and I believe there are worse things in life than this. I live in fear that it will return and I continue to pray for everyone who faces this disease so that we can continue to live and be here for our families.
Right now I live each month as it comes and never let a day go by without thanking God for giving me more time on this beautiful Earth.
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