BUT I AM ALIVE

I have been asked to submit an essay for a book publication. I am honored that I would be asked to do this and I take the responsibility very seriously. This book, as i understand it, is being created by two people who I have great respect for. One is top doctor in the field of I.B.C. and the other is a mother of a victim of I.B.C.

The article is supposed to be a type of diary of what happened to me on my road to becoming a survivor of this disease. So, while I write for them I will write for my blog.


BUT I AM ALIVE


Today before I put on my bright colored blouse and big bold earrings I think I look like a boy. My hair has grown in baby fine & sparse and the only solution seems to be to keep it cut short short short like a boy’s. My body matches my boy’s hair cut as I had a bi-lateral mastectomy without reconstruction. “BUT I AM ALIVE” and that is my mantra.

On August 15, 2005 I was diagnosed with Inflammatory Breast Cancer. The diagnosis of “Inflammatory Breast Cancer” was never spoken out loud to me though she told me that I had breast cancer and wrote Inflammatory Breast Cancer on my chart. She took a picture of my breasts so that she could show her students something that was so rare they would probably never see it in their careers. She took punch biopsies of my skin while I tried to comprehend what was happening to me. She lined up an appointment with the earliest available oncologist. She set up appointments for CT scans, heart scans, bone scans and blood tests. She handed me the standard breast cancer handbook. She told me it would be best to cancel our much anticipated Alaskan Cruise so that I could get into treatment as soon as possible. I was numb. How could this be my reality?
It had all happened so atypically. I did have a lump but it had grown overnight. I swear I hadn’t felt it before. I had a mammogram a few years earlier and nothing had shown up on that. Breast cancer is supposed to grow slowly. Where were my warnings? Where was my chance to have caught it early? I had blown that opportunity.

The first sign that something was wrong came on July 18, 2005. I had been sketching all evening. We stopped to enjoy a glass of wine and the evening breezes. My right breast began to ache. By the time I was ready to retire my breast had turned red. It was hot and it was swollen. By 3am I had developed hives. My husband drove me to the emergency room. I was diagnosed with “acute allergic urticaria and right breast cellulitis” - No Lump. I was given Keflex and Benadryl and told to see my primary doctor if the symptoms didn’t subside.

On July 20, 2005 I saw my primary physician. She examined me – No Lump. She prescribed another round of antibiotics using Doxycycline and tested me for Lyme disease.

On August 5, 2005 I returned to the Dr.’s office. My right breast still achy, heavy, red and warm but now I felt a lump. She felt the lump and then she felt another lump. She ordered a mammogram but not with any sense of urgency. We still did not fear that this would ever be diagnosed as breast cancer. This was way too odd to be breast cancer.

On August 12, 2005 I had an ultra sound, then a mammogram, and then a biopsy. I proceeded to enjoy the weekend knowing that on Monday I would be seeing a breast surgeon for my results. I was confidant that there would be an explanation for my crazy symptoms and that explanation would not be a diagnosis of breast cancer.

So, on August 15, 2005 when my husband and I prodded my doctor to explain what was going on with me, we were both stunned. After we left the office I poured over my new book trying to make sense of what had just happened to me. I learned about Staging of Cancer. I learned all about the prognosis for each Stage. By a process of connecting the dots I realized that I was not in Stage I or Stage II. I realized that there was a monster out there with the name of Inflammatory Breast Cancer and that I probably had it. I was shocked when I read the book and found lonely 4 sentences in the entire book that talked about IBC.

This time when I planned for my next doctor’s apt. I did not do it with a light heart instead I anticipated that there would be no options for me. I would probably be left to die. The skin biopsies came back negative. I clung to what the doctor said. “Even if it is not pathologically IBC you still have a 6cm tumor that is Her 2 + both of these diagnosis are treated the same”. To me that meant I didn’t have IBC. It wasn’t proven pathologically. I was still Stage IIIb but not IBC. I wasn’t an IBC patient. My odds for beating this disease weren’t as bad. If the truth be told I never accepted the IBC diagnosis until well after treatment ended.

Now I am 3 years away from that date and I will always remember it– like I remember the dates my children were born. Those dates are etched in my mind. Those feelings will never be forgotten. I realize now how absolutely lucky I am to be here today. I am lucky that I developed a lump because I don’t think anyone that I saw would have ever put my symptoms together with a Breast Cancer diagnosis. I would not have pursued the cause of my red, swollen and warm breast. It was just too odd to be Breast Cancer. It had to be something else. I am one of the lucky ones. My IBC was caught “early”.

During my treatments I read an obituary of a young educated woman who was diagnosed just 2 weeks before she died. She lived in an area with access to great medical facilities. She lived in Boston where these symptoms are still not recognized. I now pass out warning pamphlets to other women and to their doctors. These symptoms can’t be ignored. Breast Cancer is more than just a lump. Mammograms are not the defining test. Women have to know that any change to their breasts is not insignificant. I also try to give reassurances to other newly diagnosed women that there is a future for us.

Yes, today I might look like a boy but I put on my colorful blouse and big bold earrings and I chant my mantra – “BUT I AM ALIVE”.