Stage 4 IBC Survivor
It was November 1999, about three weeks after I had a mammogram that showed absolutely nothing, when my right breast started to swell and to develop an angry-looking rash. I preferred to ignore it, thinking it would go away. After all, I had a great job and everything to look forward to. I had recently turned 50 and felt wonderful. My older son had begun college and my younger one was in high school, so they were becoming more independent. I could take classes, participate in our church choir, and do many things that I had waited to do till I wasn’t needed in “Mommy Mode” quite so much.
By February of 2000, the rash was redder and itchier. My breast was hard and angry-looking. I called my doctor, expecting them to find nothing wrong that a little medication would not fix. But on February 15, a surgeon told me that he thought it looked like breast cancer, “an inflammation cancer”, as he put it. He said his office would schedule me for an appointment with an oncologist next week. Oncologist! Uh-oh. Talk about a Y2K Millennium Bug! A biopsy later that day confirmed what the surgeon suspected, and my life changed forever.
Now looking back, I find that the hardest time of this entire journey so far was the time between diagnosis through the first few months of chemo. As with most people newly diagnosed with a life-threatening disease, I felt the shock of passing from healthy to deathly ill, plus uncertainty about the future.
By the end of February, I learned that my cancer had spread to a few places in my bones, which changed everyone’s game plan dramatically. Surgery was out of the question. I had my first chemo appointment just a few days later: Taxol, Herceptin and Aredia. All I could do was pray and have faith in my treatments: *of course* they would work!
And work they did. Without exaggerating, I can say that I saw my rock-hard breast become softer within days of my first treatment in early March of 2000. The doctor was amazed. I was tolerating the medicines well. But I was still terrified. I kept reminding myself that things were looking better and that the doctor was pleased. My right breast was soft and white again by summer. It continues to look like a normal breast today.
A bone scan in October of 2000 showed that things were either stable or that the problem areas were scarring. Since that time, my doctor has ordered scans for me every four months. Despite twinges and miscellaneous scares, my scans have been coming back “stable” for the past six years. As of December 2006, I’m still on Taxol and Herceptin, the two drugs I started with almost seven years ago. I became the “poster child” for chemo at my treatment center as I have shown up every week, almost without fail, for treatments.
I’ve had my setbacks along the way, but my feelings are that as long as they aren’t cancer, I’ll take them. I’ve had infections that required brief hospitalizations. Also, I developed a mild case of lymphedema three years ago. I still wrap my arm every night and I let it out during the day.
In 2004 my jaw started hurting. The dentist could not figure out why I was having this pain in my jaw. After a root canal of a suspicious tooth, I was still in pain. The doctor finally ordered a bone scan, which showed increased uptake in the jaw. Everyone thought that the cancer had returned. My doctor referred me to an oral surgeon to perform a biopsy. The biopsy showed *no cancer* in the jaw! I had the classic symptoms of osteonecrosis that was just coming to light as an increasingly common side effect of being on bisphosphonates for bone metastases and having dental work done during chemo. During the fall of 2004, I developed repeated infections. An infectious disease doctor, called in on the case, put me on a two-month course of IV antibiotics beginning in mid-December. Merry Christmas!
Luckily, by spring of 2005, the infection had cleared up. I was again feeling great and have been on a roll ever since. I joined our local YMCA to make and keep myself more fit. While I cannot get over to the gym as often as I like, either because I’m busy or because I feel the need to rest, I still belong to the gym.
I attribute my ability to tolerate my chemo partly to good luck and partly to a healthy lifestyle. It does not hurt either to be basically healthy, which I was (and still am, I think.) When diagnosed with IBC, I switched from coffee (which I still drink, but only rarely) to drinking many cups of green tea each day. A Chinese friend of our family began cooking healthy vegetable dishes for us with plenty of garlic and ginger. My Chinese husband taught me Tai Chi and Qi Gong. I feel a sense of well-being as I do the exercises. A few years ago, I began weekly acupuncture that gives me more energy as it promotes white blood cell production and detoxification.
Almost seven years since diagnosis and “stable”, I naturally still have the ups and downs that anyone with cancer is bound to have. My energy is not boundless as it once was. I have very little hair, as I’m still on chemo. (I wear lots of hats!) Sometimes, I just feel lousy and I get tired of being a cancer patient. But I’m still here, despite my doctor’s initial prediction, and intend to stick around a lot longer. I take courage from everyone on ibcsupport.org and ibcresearch.org, and remain hopeful about new treatments in the pipeline. I hope I can be a source of hope to others.
Story submitted 2007.