I had an entirely different post scheduled to go live this morning. It was the usual story I tell when people find out I had breast cancer (which isn’t very often). It is a story that is just sad enough not to make anyone uncomfortable but is all wrapped up nicely with a bow because I survived cancer and that is a miracle and we can both leave the conversation feeling good and full of hope and you can read that on Ergobaby’s blog on a post that went live yesterday. Don’t get me wrong – its a true story, that day, but other days I have a different story. The breast cancer story that doesn’t feel so good to share and I felt that today was the day it needed to be shared.
It has been almost 10 years since I was diagnosed with one of the rarest types of breast cancer, a malignant Phyllodes tumor, in my right breast when I was 19 years old. I had found the lump originally when I was 17 but when you’re 17 you’re invincible. I was worried about what boy liked me, what college I was going to go to, and how I was going to get as far away from my small hometown as possible. It took me two years and my tumor growing to the size of a small orange to go get a biopsy.
It was my plastic surgeon that was in charge of my reconstructive surgery that told me I had cancer. He told me that it was going to be fine, that he would make my breasts look better than before (even though I would no longer have 99% of my original breast tissue, including my nipples). He told me not to be scared. He showed me pictures of mastectomies and reconstruction. If you haven’t seen it before, do me a favor and look. This is just one example and similar to the procedures I went through. Imagine being a 19 year old girl. Single. With her entire life before her thinking about how she is going to look for the rest of her life.
I went out that night to my favorite restaurant with my girlfriends and my mom’s credit card and ordered two bottles of Dom Perignon and got completely wasted. I pretty much stayed drunk for a week. I even showed up to my double mastectomy still drunk from the night before and they had to postpone my surgery. I didn’t want to face the reality. I thought if I don’t go, if I don’t have the surgery, none of this is real. None of it. I was just a normal girl. I just wanted to go home.
I had a double mastectomy the next day and it was the most painful experience of my entire life. It felt like I took a wrecking ball to the chest. I couldn’t breathe. I couldn’t move my arms. I was pretty out of it for weeks. I remember my nurse Bobbi taking care of me – changing my bandages, emptying my drains, giving me baths. During the surgery they had implanted tissue expanders where my breasts used to be. For three months I would go back to the plastic surgeon and he would inject 100 cc’s or so of saline into ports in the expanders to stretch out my skin and muscle. It was incredibly painful. I would be sore for days after. I eventually gave up and asked him to stop. That I didn’t care if my breasts weren’t as big as they were before. I just wanted it to be over.
I do feel fortunate that I didn’t have to have chemo or radiation. Luckily for me, my type of breast cancer grows extremely fast but is usually contained within itself. Meaning, if they removed every single cell of cancer – it is nearly impossible to have a reoccurrence. For a long time this made me feel like my breast cancer wasn’t “bad” enough. That I shouldn’t be complaining. And with the exception of one lumpectomy that turned out to be benign a year after my original surgery, I have been completely in the clear.
And after 10 years, it sometimes feels like it happened to an entirely different person. I was fortunate enough to marry a man who had gone through this experience with his stepmother and was so kind and understanding about my insecurities and fears. I kept my shirt on every time we were intimate for an entire year. One of my scars is very small but my scar on my right side is about 9 inches long and keloided. Most of the time I don’t notice it. Some days though, I get out of the shower and look at my body and cry.
I’m so grateful to be alive. I know there are mothers and sisters and daughters who are not and who would give anything to be here. But that doesn’t take away from my pain. From those moments when I’m reminded of what I felt like when I was awake in the operating room for 30 minutes waiting for the anesthesiologist with my arms out on the operating table, the instruments they were going to use to cut me open right next to me, and doctors walking around talking about their golf plans while I feared for my life. The moment when I first saw what I looked like after my surgery and we took the bandages off. The moment when I felt another lump a year after my surgery and thought that I would have to go through all of this again. The moment when I first took off my shirt for Aaron and waited to see if he would still love me or if he was going to be horrified and disgusted. Or the moment when I’m holding Lilah in the hospital, 2 hours after I gave birth to her, and the lactation consultant comes in and asks me how breastfeeding is going. Or how I laid both of my babies in a hospital bassinet with a name card that said “I’m a breastfed baby” and I felt the sting that that opportunity was taken away from me. The pang of jealousy I feel every time one of my friends posts a breastfeeding pictures saying “This bond is unlike any other”.
All of these thoughts are fleeting and are mostly not in my daily life. I hardly see my scars or think about what it was like 10 years ago. I’m too busy waking up at 6 am with my babies jumping on top of me ready for the day or making school lunch and bath times and all of the things I have the enormous privilege of doing every day. I don’t for a second take any of it for granted. I feel blessed beyond my wildest dreams and I know just how quickly everything can change. I try and say ‘yes’ to every opportunity that is presented to me to go explore or experience something new. And I cherish every single day with my girls because there was a day when I didn’t think this role as a mother would ever happen for me.
When Ergobaby told me about this project six months ago, I knew this would be the perfect opportunity to share my breast cancer story with you guys. But I wanted you to know both sides – the good and the bad. The truth I try and hold on to and the moments when I’m weak, afraid, and hurt. They have created this beautiful carrier in an effort to raise a minimum of $25,000 for the Susan G. Komen Foundation with $5 of every sale going to research and efforts to cure breast cancer. I hope that if you are in the market for a carrier, you would chose this one and help raise the money needed to find a cure for this disease.
Photos by Nicki Sebastian