I was 35 when I was diagnosed with IBC. I was in great health, I had been seeing doctors regularly. The only serious health problem I ever had was when I was four I had ITP (a blood disorder). I have a wonderful husband and four children who are now 7,6,4 and 3. They are great!! I knew that God wouldn't leave my children motherless, He had a plan. I may not understand it fully, but I do know that part of his plan was to bring me home to family, to quit working and be "mom" to my kids, and to give me an appreciation for my husband and life I don't think most people find in a whole lifetime.
In December 1995, about two weeks before Christmas, I noticed that the nipple on my left breast was inverted and kind of pulling to one side. This made me do a self exam and I found a lump. I asked my husband what he thought. He said I better see a doctor. With Christmas so close, I had so much to do. I had a full time job, 4 children, and we would be traveling from Atlanta to New Orleans to spend Christmas with family so I put off going to the doctor. While in New Orleans we noticed that the lump had grown dramatically. So as soon as we got back to Atlanta I called and went in on January 6, 1996. I was sent for a mammogram, biopsy, and all sorts of tests. I really was not worried because there is no cancer in my family at all and I was always very healthy, but still it was confirmed on January 8, that I had IBC. I started chemo two days after my diagnosis was confirmed. I had six courses of CAF. It was given to me by IV push in my hands. I didn't have any real problems during this time.
The doctor there gave me no false hopes and told me the statistics of this disease which we all know are not good. My husband, who has been the rock of my family through all of this, said whatever I wanted to do he would do. So, I told him I just wanted to go home, which was New Orleans. He immediately arranged for us to move into a home we had recently purchased in Mandeville, LA (across the lake from N.O.). So in a matter of two months we moved after being in Atlanta 11 years and with four children and cancer and a job that was very demanding that I had been in for ten years. It was unbelievably crazy! But, very well worth it to get home. We have both sets of grandparents near and I am second to youngest out of eight children and four of the seven who are living (I had a brother who drowned at 18 months old) live in the N.O. area. It was so much nicer to be home with family there to help. My husband, Ed, took over the management of the home life and the extended family took care of coming with me to doctor appts, chemo, hospital stays, etc.
I had a MRM on May 16, the tumor in the breast was reduced to 1.5cm diameter. Seven of 19 lymph nodes contained metastatic carcinoma. Of the seven nodes one contained a stage IIA tumor. Not good! The practice here in N.O. wanted a catheter put in to give chemo through. Then I had 6 weeks of radiation simultaneously with 5 courses of Taxol followed by ten days of neupogen injections. I had some bone and joint pain. I had a real struggle with the catheters. I was hopitalized four different times for bacterial infections from the catheter. This became almost more serious than the cancer. I came very close to death on one occassion. I also developed a blood clot around the catheter and ended up hospitalized until they dissolved it and moved the catheter for the fifth time. By September they had run out of veins to put the catheter. So, they put the catheter in a vein in my neck. It was very scary looking to my children, actually it was pretty scary for me too. There was no way to hide it. Then on October 4, I had ABMT and stem cell rescue. This was six months ago and the doctor says everything looks great!
I am very lucky to have survived this year of turmoil. I feel very fortunate and blessed in many ways (believe it or not). Cancer brought me and my family home. Ed, who is self employed, took the year off of work to be "mom" of the family and caretaker to me. We have now found ourselves in financial debt, but so rich in happiness. Somehow money isn't important anymore. We spend as much time together as a family as possible. I thank God every day for giving me such a great life!! I am sure enjoying being a mom to my kids and not totally stressed out juggling everything!
I am so glad I found this website, I have felt a need for a connection with others with IBC. If I can be of any help to you, please let me know.