(Died November 2, 1999)
I vividly recall the moment I felt my left breast become swollen and hot. It also itched like crazy. I was frozen with fear as I watched my left breast get bigger and bigger. It kept itching and continued to be hot. I knew something was very wrong. I had just had a normal mammogram a month earlier. I had always done my monthly self exams. However, I was always taught to look for a lump but this was no lump.
It took me a couple of months to get up my courage to go back for a second mammogram. This time I went to a different place to get my mammogram. I walked in and told the receptionist that I wanted my mammogram and I wanted it now. I also told everyone that I was staying until they found something. It seemed like well over an hour before the technicican was finished. She took several angles and finally did find something all right. It was a giant tumor in my left breast.
I went to a different doctor to get the results. I was told that I had advanced breast cancer and wasn't expected to live. Fortunately, she referred me to a surgeon who had seen Inflammatory Breast Cancer. He said, "I can tell from looking that you have Inflammatory Breast Cancer." "However, I still need to do a biopsy to make sure." Sure enough, the biopsy came back positive for Inflammatory Breast Cancer." He said, "We need to get you to an Oncologist immediately to start Chemotherapy." He referred me to an Oncologist who fortunately had seen Inflammatory Breast Cancer. He gave me hope. He said that it would be an uphill battle for me but what I had was treatable. He said, "We'll fight this thing together" and we have.
My protocol was much different from the "regular" breast cancer. I started out with CAF, followed by radiation, then a mastectomy. I had almost 18 months of chemo afterwards. First Taxol and then Navelbine. I was very close to beating the beast down for good when an awful thing happened. I got a bad staff infection from my portocath. I first had to get rid of the infection then get the portocath removed. This meant that I had to be off my maintenance chemo (Navelbine) for about 6 weeks. It was just enough time for the cancer to rear its ugly head again. I broke out with Skin Mets which is usually an indication the cancer has spread elsewhere.
I had a bone scan which indicated massive bone mets to my lower back and hips. By this time, I was in terrible pain like there was no tomorrow. Believe me, there is no pain worse than from bone mets. I was hospitalized twice in February '99 for pain. While in the hospital, I met with a Radiology Oncologist whom I believe must be a genius. He devised a treatment plan that worked for me. He has some wonderful technicians who successfully carried out this treatment plan. I started radiation treatments towards the end of February. I responded immediately. My last treatment was the end of April. I'm now taking Aredia to repair my bones. I'll be on it for 1 year. I'm also on Xeloda to catch any of those "bad buggers" who are still lurking around.
Today, I have good news. I'm now pain free. The radiation killed all the bone mets. The Xeloda is catching those "bad buggers." My quality of life is returning. I just returned from a trip to the Bay Area to visit my sister. I got around great while I was there. I take stretch and tone class at the hospital and have started work outs at my athletic club. You see, I intend to be walking at the Race for the Cure. I want to be in shape for it. My mobility and range of motion is coming back.
With the exception of the last 6 months, I have continued to work through all of my treatments. I am on long term disability and hope to return to work sometime before the end of the year. I'm hoping for September. I am impressed with the resilliance the human spirit has. I went out of my doctors' office the night that I got the horrible news knowing that I would "beat this thing." This is the biggest challenge that I've ever had to face in my life. I used to think that if something like this ever happened to me that I'd just give up. This challenge has made me a much stronger person. Once I heard the awful news,I never once thought about giving up. I think this is what has impressed my family, friends and co-workers.
This experience has definitely changed how I look at life. I look at each day as a gift. I rarely have a bad day. I'm enthused about life and what it has to offer. I am even more health concious now than I was before my diagnosis. I believe that people closest to me have a greater appreciation for their life after witnessing what I have gone through.
I would like the world to know there are other forms of breast cancer that are not as well known. They don't get the funding for research because there are not as many women being diagnosed with it. We are finding that many women are being misdiagnosed because their doctors are unaware of IBC and how to treat it. You don't have to find a lump on your breast to have breast cancer. Breast cancer can manifest itself with different symptoms other than a lump.
On my best days, I give thanks for my life. On my worst days, I also give thanks for my life and remember that every day is a gift.
I sat down with my family and told them. I told them we'd get through this thing. I also told my employer. They have been just great. I called a meeting with my managers (both men) and told them that I'd beat this thing. Everything would be business as usual but that I'd need to have time off for treatment. I thought that I'd better tell them because I had not missed a day of work other than vacation time. I'd always been so healthy. Their response exceeded my expectations. One of my managers started to cry. They both gave me a hug. They have been most supportive.
When I was striken with bone mets, my dept. had 10 minutes of silence. They shut down the phones and had a meeting to tell everyone. Every day, someone from my company would stop by to see me and help me out with chores and things. They even would clean my apartment. It was the most healing thing you could ever imagine. One of the most incredible things that happened to me was when the employees of my company took up a collection and bought me a new computer.
I get a lot of support from my friends at work, family, and my church. Also, I belong to an internet support group for Inflammatory Breast Cancer. It has been most helpful in getting as well as giving information. The best thing someone can do is just offer to be there for me. Ask me how they can help. This is what happened to me and I think its the best way.
No one can change what has happened to me. However, there is a choice to be made when catastrophic things happen -- You can choose to be bitter or you can choose to be better. I choose to be better. Also, don't listen to statistics because they are all based on treatments that were available 5 years ago and not what is available today.