Today is October 1st and it marks the beginning of Breast Cancer Awareness month, aka, Pink-tober. This holds some deep significance for me as my mother died of breast cancer in 1968 (I was 15 years old), my eldest sister was diagnosed in 1990 (she is a survivor!) and I was diagnosed in 2011. Additionally, I have many aunts and cousins on both sides of my family who have either survived or passed away from this disease. This post is to honor all my family members, friends and fellow bloggers who have been touched by this disease.
I felt today was an appropriate day to tell you a little of my personal story. I had been pretty diligent in getting my mammograms since I was 30 years old (now that was a very long time ago!) I have had multiple scares -- as a matter of fact, most of my mammograms required follow ups. I had what they called fibro-systic breast disease which meant I had many cyst type lumps in my breasts which made it difficult to distinquish any other types of lumps from a cyst. So, when I had my mammogram in February of 2011, it was no surprise to me that they called me back for more tests. Now I have also had multiple biopsies, so I was not even surprised when my Dr. referred me to a breast surgeon for a biopsy. My biopsy was scheduled in April, and it was negative, however, the Dr. felt because of my family history that they should surgically remove a lobe from the suspicious area within the next 6 months just as a precaution. This had me a little worried, so I decided to proceed sooner rather than later and that surgery was scheduled for May 9, 2011. My breast surgeon (who has one of the best reputations in the area) told me that if he was a betting man, that he would bet that everything would be benign. I waited rather anxiously for the results to be back, but I was not overly worried. I mean I felt that now that I was in my mid-fifties and most of the women in my family had been diagnosed in their 40's, I felt that maybe I had dodged the breast cancer bullet.
May 17th I had a followup appointment with my breast doc, however, he apologized for the fact that the lab still did not have the results, but they would call me no matter what time. He again said that based on his experience, it did not look to him like I had cancer. So at 2:00 pm, when his assistant called me on my cell, I was not prepared to hear the words: "You have breast cancer." I was at work, so I gathered up myself to a private office so I could talk more freely. The words were a blur, ". . . invasive lobular breast cancer, only 10% of cases are of this type. Need to schedule an appointment to discuss options", and so on. It really didn't hit me until I got up to walk back to my desk. I stumbled as I came out the door and a couple of my co-workers could see the shock and tears in my eyes. My boss was called and I told her what was going on. I went home for the rest of the day.
The next several weeks were filled with appointments and research and tests. First, my surgeon scheduled an appointment for the end of the day the following Tuesday so he could spend uninterrupted time with me to go over everything. I brought along a friend so she could help me keep track of what was said. I had ultrasounds, MRI's, bone scans, and even had a suspicious looking lymph node biopsied ahead of any other surgeries. My diagnosis was: Invasive Lobular Carcinoma (ILC), Stage 1, grade 2, hormone receptor negative. This started countless hours of on line research, appointment with oncologists, radiation oncologists, plastic surgeons and the like to go over my possible options so I could make a decision as to my treatment plan. It did not help, that without my permission, my boss told everyone at work that I had breast cancer and everyone chimed in with their opinions. This, BTW, was NOT helpful. I remember a comment by someone: "Oh, you have the good kind of cancer, you are going to be fine!". While I believe the comment was well intentioned, it hit me that many of them trivialized my diagnosis. What! No cancer is good cancer! They had no idea what I was going through. And they all had a opinion on what I should do. I was very angry with my boss for making this public. This should have been a very private matter for ME to discuss only with whom I felt comfortable discussing it with.
Bottom line after all this, ILC is diagnosed in about 10% of the cases of Breast Cancer. The most common type of breast cancer (80%) are ductal or Invasive Ductal Carcinoma (IDC). What is know about ILC, is that it is difficult to detect. Most cases are advanced before that are diagnosed and in about 80% of the cases, it spreads to the other breast. They treat it the same way that they treat IDC because they don't know enough. While my Dr. said that the statistics showed that the success rate with lumpectomy and radiation was as good as mastectomy, he said if it was his mother or sister, he would recommend the latter. After a lot of agonizing and sleepless nights, I finally decided on a bilateral mastectomy with reconstruction. I had this surgery on July 25th, 2011. In the end, this turned out to be the right option as my other breast already had precancerous tissue. Luckily, there was no cancer found in the lymph nodes and I had a very low ONC score so I did not need chemotherapy. Since then I have had multiple follow ups and surgeries to complete reconstruction.
Like I said, I had many sleepless night. I don't remember how I stumbled into it, but on one of those nights that I couldn't sleep, I found a Barbie story blog (it was called dollies series at the time). This was Adrian's blog which is now "The Waverlys". It took a while, but I went back to her very first episode, and read every one of them. I was intrigued and couldn't believe how cool it was for an adult to play with their Barbie's and make dioramas and tell stories! I was hooked, and after completing all of the episodes, I was hungry for more. Next, I found Vanessa Morrison's blog and did the same thing. I read every post. I was so impressed with her sets, the furniture she made and her personal story touched me so much. I think the next one I found was Roville. Well, I will tell you that Ro is a master at diorama making. If you haven't seen her blog and photostories site, you should. It is well worth it. I fell in love with these blogs, and not only did they help to keep my mind from going totally berserk because of my health issues, they inspired me to want to do more with my dolls. Since then, I have discovered how to remove a doll's head to give her an articulated body (thanks Vanessa!), I had started making doll beds for my nieces and then began expanding my collection and making furniture of my own. I now follow many more blogs and have been a frequent commenter on several of them. And this year, I started my own blog and am enjoying my hobby even more.
Below is a picture of some of my ladies dressed in Pink in support of Breast Cancer Awareness.