Living My Breast Life

I often agree with people when they say social media has ruined the way we interact with each other. We are too entranced by our phones that we rarely look up to see the world around us. We would rather scroll through pictures of someone else's adventure than make our own, and we've lost that irreplaceable connection you have with someone when you talk to them face-to-face. When you're hidden behind a keyboard, you can be anyone you want to be and say anything you want to say, no matter how cruel. You don't have to deal with the reaction of the person on the other end, unless a reaction is what you are looking for. On the other hand, not everyone on the internet is an offending muggle! Some people use social media for good. They can be who they want to be and say what they want to say to get the word out about something IMPORTANT!

As most of you know, October is breast cancer awareness month. Luckily for me, I was diagnosed with breast cancer October 2nd. So, while I was wearing endless hospital gowns, being poked by needles, getting drilled into my spine, waiting for biopsy results, crying in front of strangers, and questioning how long I have left to live, I got to see pink balloons and breast cancer awareness signs literally everywhere I went. It was haunting. We are all AWARE that breast cancer exists. Most of us have seen the commercials on TV, walked miles in pink t-shirts, and changed our profile pictures on Facebook to support those of us dealing with the disease, but the problem is that we stop there. We are raising money, but where does that money actually go? To the pink shirts, bracelets, and pins we wear? To the huge events held to promote awareness? To the CEOs of these foundations? I am definitely not saying we should stop walking or forget about the awareness aspect completely. Awareness is important and still very much needed! However, breast cancer is more than just a pink ribbon and, sometimes, it's easy to forget that.

Shortly after I was diagnosed, I did a little search to see what different organizations there are to support people like me. I quickly found that there are literally countless groups around the country who do amazing things for breast cancer patients, it's astounding! I found some of these organizations on Instagram and have been able to learn so much from them (just one of the perks of social media)! One of these groups using social media for support is an organization called Metavivor. Ever heard of it? Me either, until just recently...Metavivor is a non-profit dedicated to increasing awareness specifically to metastatic breast cancer, which is is the only breast cancer that KILLS. They are also the only organization to donate 100% of its proceeds to metastatic breast cancer research! Honestly, now that we are AWARE of this deadly disease, lets put some money into finding a CURE! We have all heard of the American Cancer Society and Susan G. Komen, why did I have to wait until after my diagnosis to learn about Metavivor?

Through Metavivor's Instagram page, I have been able to connect to people all over the country who have been diagnosed with breast cancer, but more specifically metastatic breast cancer. I can relate to them and they understand what I am going through more than anyone! I can ask strangers questions about their experiences and get advice from them about how to make a certain decision or what products to use throughout the different stages of treatment. On Instagram, it has also been nice because everything is through pictures and videos. I can literally see the side effects they're describing and watch their hair growth after chemo! I can also prepare myself for what my mastectomy will look like or how sore and red my chest will get after radiation. It is such a supportive community that no one ever wants to be a part of...

Last month, I started seeing people share posts about Metavivor teaming up with Ana Ono Intimates (intimate apparel dedicated to women who have undergone mastectomies and/or radiation) during New York Fashion Week! All of the models for the show were diagnosed with metastatic breast cancer and 100% of the proceeds would be donated to Metavivor and put towards research! Of course I had dreams of attending, but our budget is tight with me not working right now, and I couldn't justify the cost of a trip into the city and a ticket to fashion week. About a week before the show, they shared that people sponsored enough tickets to the show that MBC patients could send in their information for a chance to be added to their guest list at no cost! I sent in my name and email and was notified a couple days later that I was chosen to join the once in a lifetime experience! I quickly reached out to a couple of my friends who spontaneously decided to come along with one question - "What do we wear!?"

The picture above is of me in my fabulous royal blue jumpsuit I found at Marshalls for $25, minus a $15 gift card, for a grand total of $10!! Jack-freaking-pot! The color was perfect, because I truly felt like ROYALTY! My friends and I took a surprisingly smooth drive into NYC, parked in a nearby garage, and found the venue quite easily (once we put the right address into the GPS! 😝) The doors to the Angel Orensanz Foundation opened at noon, and we walked right in no problem! After checking in, and our 2-hour car ride, we blindly rushed to the extremely tiny ladies room to freshen up. When we walked back out, we were in absolute amazement at how beautiful this place was! Angel Orensanz is an old synagogue built in 1849, that has since been renovated and is now used for private events, fundraisers, concerts, and fashion shows. Not only did the architecture and lighting catch our eye, but the strong and powerful faces of the people walking around us stopped me in my tracks. I was truly amazed and felt so comfortable being in such a large space filled with people just like me. To call it empowering is an understatement.

After snapping a couple pictures, we made our way upstairs to the balcony where they had a nice brunch spread out for everyone to enjoy, and a fancy "red carpet" to take more photos on (see above!) We spent some time up there laughing, chatting, eating, and drinking...I even found some Instagram followers who I had connected with before, which was really pretty neat! We went back downstairs to claim our spot and ended up meeting some other people while we waited for the show to start. One woman was a survivor, and there was a man there whose wife was one of the models! He shared her story and it was as if he was talking about me - under 40, toddler at home, recently diagnosed de novo (stage IV at first diagnosis) with bone mets. I knew we had to connect and, sure enough, social media came through for us again! We've been following each other for just a couple weeks now but we already have plans to meet up and have a play date for the kiddos!

Just after 1 o'clock, a man came on the stage to open the show. He also had metastatic breast cancer, which is yet another reminder that men need to check themselves too! He gave us two numbers: 40,000 - the number of people who die from breast cancer each year, and 113 - the number of people who die each day from MBC. What a way to set the tone. These numbers are not only too high, but truthfully, these numbers should not even exist! As he finished his speech, the crowd of people in that room roared for his bravery and we all knew we were in for a phenomenal show! Before the models  came out, a gorgeous voice took the mic and sang a moving song she wrote just for us. As her song ended, the speakers shook the room with songs like "I'm Every Woman" by Whitney Houston, "Run the World" by Beyonce, and "PYT" by Michael Jackson. We couldn't help but dance, shout, and cheer on the strong women who took the stage in front of us! It was unforgettable. Women of all ages, shapes, colors, and sizes strutted their stuff that day and gave us all the encouragement we needed to not only be comfortable in our own skin, but to also see what Ana Ono Intimates looks like on REAL women who NEED them. These women have these bras and underwear in their drawers at home because they are so very comfortable, yes, AND because their bodies have undergone things you wouldn't believe! This wasn't just an ordinary fashion show, though. This was a movement, a call for CHANGE! These women modeled off gorgeous apparel while also sending important messages to everyone...

Words like "I AM LIVING" "NOT JUST ONE" "METASTATIC AF" "1 in 3" "FIERCE" "MOTHER" "FEARLESS" and "SAVE US" were also walking that cat walk. There is more than just one person living with this incurable disease. Sadly, but truthfully, we are an army! Let's just say, Metavivor and Ana Ono really got their message across. Simply stated, it's time for a change....it's time for a CURE!

Once the fashion show was over, we walked out of that building new women. My friends that came with me may not have MBC, but all three of us were changed after that experience. It wasn't just a cancer reality check, but it made me rethink how I live my life. I'm going to focus more on living in the moment rather than worrying about my future. There's no time for that. Right now, we need to lift each other up and do what we can to get everyone to live their longest and absolute BEST lives every day. What can we do today to better our tomorrows? 

I have received so many compliments on how "strong" and "positive" I have been since my diagnosis last October. I find myself questioning how authentic these comments are, though, because isn't that just what you say to people with cancer? Then people assure me that it is when I share a picture of me smiling or enjoying an event like this on social media that tells them that they can have a good time and enjoy their life, too, no matter what is thrown at them! Let me tell you, not once did I ever think that I would be diagnosed with a terminal illness. Not once did I think I would ever need chemotherapy or a bilateral mastectomy. Sure I have my down days like anyone does, but NOT ONCE did this cancer ever keep me from smiling or laughing or enjoying special moments with friends and family. I will keep laughing until the day I die, and I will post proof of my smile everyday if I have to, even if it's just to smack cancer in the face one more time!

Trust Your Intuition

Well, that's a wrap! My sixth and final chemo treatment has come and gone! One part of me is relieved AF, the other part of me isn't even phased. You see, I'm done with the "chemo" part - the dreadful uneasiness in my stomach, the extreme fatigue, the poor taste in my mouth, and hopefully the uncomfortable GI issues (💩)...but in another three weeks, I'll be back in the same chair, with the same nurse (who I LOVE), hooked up to the same IV. I may not be getting the complete 4-serving cocktail, but I will still be back in the hospital every three weeks, indefinitely.

My cancer spread to my bone before I found it. Everyone always says 'Early detection saves lives!' and 'Good thing you caught it early!' but the truth of the matter is, I didn't. Yes, I could've caught it even later. Yes, it could have spread even more than it did. But reality is reality, and my reality is that my cancer metastasized before we even started treating it...and I can't help but feeling somewhat guilty for that. Now, I'm left driving to Uconn every third Monday while putting Lidocaine on my chest, hoping to numb the pain of the needle poking my skin, and crossing my fingers that the nurse gets a blood return on the first try. I'm left in auto-pilot taking the elevator to the fourth floor, checking in with my name and date of birth, and telling the receptionist that, no, I have not been out of the country in the last 30 days, but damn I WISH!

I may not be going out of the country anytime soon, but I am going to seriously take advantage of this short month we call February! I am planning on seeing as many people and doing as many things as I possibly can, because as soon as March rolls around, it's surgery time. I don't know about you, but just the thought of surgery and slicing my skin open makes my stomach turn! The recovery might be less time than the duration of my chemo, but I hate thinking about the pain I will be in and the way my children will react when I can't hug them or hold them in my arms. I have been trying to plan ahead and reorganize our life to make it as easy as possible to deal with my limited mobility and strength. Right now, my kids are getting to be at a good age where I don't need to worry about carrying them as much. They are 2 and almost 4, so they are definitely getting to be more independent. My 2 year old, T, is still in diapers, but I figured when I need to change him, he can just lay on the floor or climb on the bed. We, also, just switched him out of his crib and into a toddler bed, so I won't have to worry about lifting him for nap time. The only other time I would need to pick him up would be getting into his carseat, but I won't be driving for a while anyways, so someone will always be with me to help with that. So I'm set right?? Wrong. These are my children. They are 2 and 3. They fall down, they get upset, they fight, they struggle. They need their mother and someone there to give a hug and kiss a boo-boo every once in a while! It's going to be difficult, and I know that. I also know that I have so much support around me to help when I need it. I have a husband who is planning on sacrificing his paycheck on our already tight budget to support his family the first few weeks after surgery. I have a mom and dad who live close by and are retired, willing to do anything they can to make this cancer disappear. I have two sisters, near and far, who would do anything to help in an instant. I have in-laws who have already shown so much love and encouragement. I have aunts, uncles, cousins, nieces, nephews, friends, and the list goes on. Now, more than ever, is my time to stow away my pride and accept the help as it is offered. I have already been overwhelmed with the support I have received from people, some of whom I don't even know, and it is comforting to know that you all still have my back. For this, I will be forever grateful.

Now my mind shifts to the logistics of what March 5th will bring. I have been following some other blogs and doing my research online to try to navigate between the different types of surgeries there are. In my search, I learned that most people who have metastatic breast cancer don't actually get a mastectomy at all. Apparently, the reasoning is that once the cancer has spread, there is no added benefit to removing the breasts. To anyone else, a mastectomy is supposed to prevent any leftover cancer cells left inside the breast from spreading to the rest of the body, but to a patient with metastatic disease, the damage is already done. In my case, however, I am young, the cancer has only metastasized to a small part of my spine, and there hasn't been any damage to the bone. My oncology team and I are determined to treat my cancer for cure no matter who says it is incurable. We are treating this like any other breast cancer case and I am confident that my breast surgeon will remove any remnants of cancer there is.

I have opted for a double mastectomy while removing both nipples and most lymph nodes on my left side and under my collar bone. I have met with my breast surgeon, who is the same woman that did my port placement, and we are both on the same page. It is a big surgery, but it is also very routine in this field, so I am not too concerned for the success of the actual procedure. More of my concern comes from the reconstruction side of things. Some women opt out of reconstruction, but, for me, I feel as though I need this added step to feel more comfortable in my own skin once everything is said and done. There are so many different routes you can take to make you feel "normal", but I need to just accept that no matter what I do, I will never get my body back to being as perfectly imperfect as it once was. It's amazing how no one ever thinks their body is perfect until you are forced to deconstruct it and mold it again. A woman's true beauty is in her imperfections, and you'll never quite get it just right. Perhaps I'll need to embrace this notion even more post-op....

After meeting with my breast surgeon, I met with a plastic surgeon who will be doing the reconstruction part of it all. Before meeting with her, I did some solid research to get an idea of what different options their were. Between implant reconstruction and autologous reconstruction, LAT flap, TRAM flap, DIEP flap, over the muscle, under the muscle... I still had no idea what to do! One big concern was that I would be doing radiation after my surgery. Radiation tends to make your skin super tight and makes it much more difficult to work with when considering reconstruction, especially with implants since the goal with that would be to stretch the skin beforehand. Since I would be getting radiation on my back, we decided that a LAT flap was not the best option - this is where you take skin, fat, and muscle from your back to create a new breast. A TRAM flap would take skin, fat, and muscle from my abdomen, but not only would it leave a huge scar, it would also be very difficult to recover from since we use our abdominal muscles so much every day! I did considered doing a DIEP flap, and my PS said I would be a good candidate as well. This would only take skin and fat from my abdominal area, but after examining me, we weren't convinced I would be happy with the results since I am fairly slim. She said I could potentially take tissue from other areas that are more fatty, like my thigh or buttocks, but I still don't feel quite comfortable with the recovery of something like that. I ultimately decided to go for expanders and implants. With an implant surgery, it is pretty likely that they will have to go back in to replace them over time, and there may be issues of my body rejecting the implant altogether, but my gut is telling me that this is the path I should take for now.

The plan is that in the same surgery, once my breast surgeon is done with the mastectomy, the plastic surgeon will go in and put expanders under my pectoral muscle. Every week or so, I will go in to have them injected with saline until they are expanded to how I would like them (don't worry, I won't turn into another Dolly or Pamela!) After they are fully expanded, I will complete radiation (TBD) and have a final surgery to swap the expanders out for the implants. Although radiation may effect the outcome of this type of reconstruction, I decided that I would rather try an "easier" surgery first before slicing my whole body open and moving more things around than I need to. I understand that this may not work as well as I hope, and I may have to go back to get things fixed, but if I have learned anything from this journey so far, it is to trust my intuition. I have never been one to make decisions easily, and this is not an easy decision for anyone, but it is my life, my body, and ultimately my decision on how to move forward. I am becoming more confident in this path I have chosen, but I am ready to take on any other obstacles I may face along the way. Wish me luck!