I should probably start off by introducing myself. My name is Nikki. I'm 45 years old now. I live in New England with my incredible son who I love more than words can explain and is the reason why I've made many of the choices I have made. I should also come right out and say that I'm not a writer by any means. My grammar isn't fantastic and I type exactly the way I talk. The reason I'm writing this blog is because today I shared my story with yet another friend who was diagnosed with breast cancer. I told her that I am open about things because if my story helps anyone else, then everything I went through is worth it.
I have a unique backstory. This isn't a regular breast cancer story. I was born with PID (Primary Immune Deficiency) and as an adult (in my early 30's) I was diagnosed with Lupus SLE. When I was 24 my mom died from breast cancer. When I was 11, my maternal grandmother died from ovarian cancer. Around age 25 I had BRCA testing done. It was negative, so I figured I was lucky and enjoyed my 20's without worrying too much about breast cancer, though I did still get my annual exams and scans (MRI alternating with ultrasound) done. When I got diagnosed with Lupus, I figured "I guess that's 'my thing' and cancer isn't going to be 'my thing'" (not even sure that makes sense, but if you've experienced any sort of medical worry then I think you'll understand!).
At 33 I had my son. The greatest joy of my life! Around age 34 I felt a lump. It was precancerous and removed via lumpectomy. I had a few other scares with lumps and it just felt like a hamster wheel of anxiety with each scan and biopsy. I had more genetic testing (90+ genes now vs the 2 when I had it the first time!). I found out that I have variants of unknown significance in PalB2 and Rad51C...which is technically considered to be negative unless the doctors deem it to be positive eventually, and that really kind of sums up how wild and confusing the medical world is! I saw Dr. Rana at Dana Farber and she went through everything with me. My family history combined with my precancerous lumps and a few other factors (likely the genes) made me high risk enough to warrant considering a preventative double mastectomy.
I had a toddler at the time, so I tabled the idea and kept getting scans for a few years. Over those few years I did a lot of research and talked to my other doctors (rheumatology & immunology). My initial plan was for a double mastectomy with implant reconstruction. I figured I would get a nice mommy makeover out of the deal! But, I quickly learned that implants would be very risky with my immune system (my body could reject them, or it could make the lupus more active), so that left me with two options. First option was to monitor and treat if I got breast cancer. 2nd option was to do the double mastectomy but leave my body with an aesthetic flat closure....basically just a flat chest with stitches across. I was in my 30's and that felt really horrible and dramatic, but what options did I have? DIEP flap surgery is intense and would require an ICU stay due to my immune system and for me the risks just felt too...I don't know...risky.
I eventually scheduled my mastectomy for February 2020. Then I got the flu and it got delayed. Then the pandemic happened and it cancelled again. On September 15th 2020, I had my double mastectomy. I went alone (due to the pandemic) and I was scared. Due to my immune system and the risk of catching the virus, I had my surgery as day surgery (WILD right?!?!). It was actually fine. I will write a separate post about the surgery itself.
This was me right after the surgery. No one could come inside the hospital due to the pandemic, so I sent a thumbs up via group text to show everyone I survived.
Two weeks after the surgery I met with the surgeon who said the pathology report found early stage cancer. It did NOT break through the duct walls though, and I wouldn't need chemo or radiation. She said I was very lucky though, as the cancer was high grade and fast growing.
I physically recovered easily, but what I didn't realize was how different my life would be. How different I would feel in my new body. How hard it would be, but also how lucky I would feel. It will be 6 years this coming September. Life feels different, and well, unreconstructed...in many ways, hence the blog name. I initially thought of calling the blog "Brea$tless in Boston" but I was concerned I might get the wrong type of reader ;) LOL
I'm a private person as far as the internet goes. I don't know that I'll show my son's face here, it's not his blog and he's at an age where he probably would prefer not to be online in this capacity. But I do want to share other parts of my life too. Mom life. Maybe some recipes. I also needlepoint and I find it very calming. Mostly, I want this to be a place that other moms who may be facing health challenges while having to also keep a smile on your face for your family can come to see that you're not alone.
I don't see this being a fashion blog, as my current shape is somewhere in between Winnie the Pooh and the Grinch, but I do hope to share ways I've felt more like myself (thank you to Athleta for making the Empower Pads!) and AnaOno for making comfortable post-mastectomy bras that don't look like they only belong on 80 year olds (no offense to the older ladies!)
I honestly don't know what this blog will be. I doubt anyone will find it and read it. Maybe it's just my therapy of feeling like I need to put this all out there. It's hard to go through, and I want anyone who might find this to know that you're not alone.
More to come.
- Nikki
