Flat AF!

Well, I did it! Just about 3 weeks ago I had my bilateral mastectomy and, despite the way I envisioned it, I am alive to tell my story! Before going in, I was terrified about the aftermath. Not so much about how I was going to look (I got over that pretty quickly), but how I was going to feel. I truly thought I was going to be in bed for weeks, not able to move, and in agonizing pain. Much to my amazement, I have been recovering SO much better than I ever thought I would.

This step has been different than the chemo part of treatment. With chemo, I felt like crap for about a week, then I'd feel better for a bit, have infusion again, and continue the roller coaster ride. After surgery, the only direction I was going was up. Each day felt better and better, and I could move more and more. It was frustrating not being able to drive or shower, hold my kids or reach things in the cupboards, but my range of motion improved everyday! I am so very grateful at how quickly I've bounced back!

Now, let me take you back to the morning of surgery...

I had to be at the hospital for 9am Tuesday, March 5th. We dropped the kids off at Grammy's the night before (thanks Mom!) so my husband and I were actually able to have a quiet dinner together and get a decent sleep despite the anticipation of a surgeon slicing me open the next day! Of course, I also had to fast beforehand. It was only from midnight the night before, but whenever anyone tells me that I can't eat, I feel as if I'm lost on a deserted island scrounging for food and all I can find is fucking tree bark. I may be exaggerating, but the fasting might have seriously been the hardest part.

So my husband brought me in for 9am. We checked in with the nurse, the hubby made sure he knew where the cafeteria was 😜, and we waited for them to call my name. When they brought us in, they gave me my oh-so flattering one-size-fits-all gown to wear with matching gripper socks. I was ready to rock and roll! Just kidding, I laid in bed for about an hour and a half, stomach growling while meeting different nurses, residents, my surgeon, the anesthesiologist, and signed a bunch of papers. Before they could wheel me into the OR, I had to go upstairs for the first part of my sentinel node biopsy. A radiologist injected a special blue dye into my breast that spread to my sentinel nodes, staining them bright blue so the surgeon knew where they were once I was opened up. Once she was in there, she would be able to remove them one by one and pass them on to the pathologist who was in the OR with us. Based on the pathology of each node, they could determine how far out they needed to go. This initial biopsy was a quick, painless procedure, and before I knew it I was on my way back downstairs. Shortly after my little field trip, they gave me a happy drug that felt like a couple glasses of wine. After this, it gets a little blurry (maybe it was more than a couple glasses??). I remember being in the OR with a ton of people around and they injected a nerve block into my arm that was actually quite painful! It only lasted a couple seconds, then before I knew it I was awake and in the recovery room being told that everything went well while i stuffed my face with chicken fingers and fries! Yum!

I'm not speaking for my husband when I say this, but I actually ended up sleeping pretty well that first night, all things considered. I mean, I probably would've slept better if they didn't keep checking my vitals and if they didn't give me a good wake up call at 6am with a team of about 10 doctors all staring at my unwashed face, but it's all good. Even soon after waking up from surgery, though, I was moving my arms more than I thought that I would be and I felt well enough to get up to use the bathroom - which BY THE WAY remember that blue dye they injected into me?? Yeah, my pee was bright blue for at least 24 hours! Crazy! Anyways, that next day, my surgeon came to visit me and we discussed the pathology of the lymph nodes and breast tissue. She told me that she removed a total of four nodes. The first two had micro-metastases so she removed a third one that came back clear! Just to be safe, she took out one more which was also clear so she was comfortable enough to stop there, YAY! As for the breast tissue, she said that there were some scattered, non-invasive cells but this was MUCH better than my initial diagnosis of 12cm of invasive cancer cells!! The cells that were remaining were not of too much concern, especially because she did everything she could to remove it all anyways. Not only did this report show some good news, but I was feeling just as good! This next day, I was slowly, but surely walking around that hospital floor struttin' my stuff. I had on this fancy, pink, floral, stretchy tube top along with some sweatpants, a hospital gown, and some new accessories hanging out of my sides - the infamous drains!

At home with my new "accessories"

I guess fasting wasn't so awful after all...those 'pain-drains' were definitely worse. I had one on either side of me. Picture a thin tube sticking out of my ribs with a little bulb at the ends collecting excess fluid my body was producing after surgery. Blech! Just thinking about them makes me quiver! They weren't so much painful as they were annoying and in the way. I didn't want to move too quickly in fear that they would get snagged on something and pull out. Showering was not going to happen because I get light-headed with things like that, but even taking a sponge bath was miserable! I couldn't even wear more than a couple different shirts, because the bulbs wouldn't fit... For over a week I was a hot, stinky mess! There are several companies that make accommodating shirts, though, that have pockets for the drains and button up nicely to make it easier to slip on and off. Lanyards and drain belts are also easy enough to find to get you through the couple weeks with drains (check out the Products I Love section above⬆). As with everything else I've been going through, I kept reminding myself that this was all temporary and they would be removed soon. Oh my, but once they were gone, I felt like a new woman! I had no idea that the majority of my discomfort was from those damn drains! Thank goodness I only had them in for 8 days. They were the longest 8 days of my life, but some people have them in for 2 or 3 weeks! No fun.

Drains are gone 8 days post-op!

I ended up staying in the hospital for 2 nights. As much as I missed being home with my children, I knew that once I was discharged, I would feel like I needed to do more than I should, and I was worried about the kids jumping on me. We made it home Thursday, and I was pleased to find that I was able to get into bed comfortably! Some people need to sleep in a recliner for a month before being comfortable enough to get in their beds, but with my pillows positioned just right (including my wonderful u-shaped pillow I mentioned in my last post!!) and scooting myself around like a dog, circling the perfect spot to lay down in, it was perfect. After coming home, a visiting nurse came to check on me once a week. She checked my vitals, monitored how my incisions were healing and what my drains were producing. At first I didn't think I would need a visiting nurse, but for a quick visit, it's reassuring to have a professional look me over and be there to answer any questions that came up before I followed up with my doctor.

Now, I am happy to say that my pillows are back to normal, I can wear pretty much my entire wardrobe, and I am feeling human again! I usually sleep on my back anyways, which was convenient, but every once in a while now, when I want to lay on my side, I can! At 3 weeks, with the help of lots of stretching and some yoga, I can reach my arms above my head and get things out of the cupboard on my own again! Even at the 2 week mark, I felt comfortable enough to be at home by myself with the kids, drive, and even run! I ran 3 miles two days in a row, which is back to what I ran just before surgery! It feels so good to get my body back and exercise simply because I CAN! Looking at my life right now, I don't think I will ever take advantage of this body that I have. We have one body to live in for the rest of our lives, it is up to us how we decide to use it.

For anyone reading this who has a mastectomy in their future, just know that there is a light and each of these steps is temporary. You will get better and you will get your life back! However, some people do not bounce back so quickly. I am young and I like to think of myself as a pretty active person. These things definitely help with recovering from anything, but I also opted for a less extensive surgery. If I had chosen to do reconstruction right away, my story would be completely different. I think that getting my butt back to the gym between chemo and surgery was the BEST thing I could have done. I built up my strength and got into a rhythm that I knew I wanted to get back to. My Livestrong program at the YMCA was my incentive to get moving again after surgery, even if it was just to walk on the treadmill. It got me out of the house and allowed me to pencil something into the calendar for myself that wasn't a doctors appointment! I am so relieved I only had to take one week off from the program. My team helped me out with the transportation for a bit, but it felt so good to be back. Sadly, I am almost at the end of my 12-week mark with Livestrong, but that will be a post for a different day...

Boob-Voyage!

It has been 36 days since my last chemo and roughly 25 days of feeling well enough to really enjoy the world around me. It has been absolutely wonderful waking up each day knowing that my hair is starting to grow back, my appetite is getting back to normal, and my energy is back to where it once was. I joined the Livestrong program at my local YMCA back in January, and I am finally feeling like my strength is where it once was! I've been running again (despite the way the DREAD-mill makes my shins feel) and I actually made it to 3 miles last week! I was so proud of myself! There are 7 other people in my Livestrong group, and twice a week we meet up at the gym with our trainers to regain the strength, endurance, and confidence we all once had. It's nice because we all can relate to each other with our current or past cancer diagnoses, but it doesn't end up being the center of our attention. We are more focused on escaping the poor realities of cancer, creating lasting relationships, and working hard for ourselves! Unfortunately, I will need to miss these next few weeks as I undergo a bilateral mastectomy tomorrow and phase into the recovery stage of this part of my treatment. I am determined to head back to the gym, but I also recognize that I cannot push myself too hard too fast through this difficult step. I want to heal the best I can, so I will begin by walking and avoiding any lifting or reaching over my head, then progress when my body is ready and my doctors give me the go-ahead.

I described my thought process about my upcoming surgery in a previous post, but since then I have decided to take a different route that I should probably touch base on. Originally, I was planning on doing reconstruction at the time of my mastectomy with expanders and implants. I was told that this could be difficult with radiation coming up after surgery, but I figured I'd give it a shot. However, I met with my plastic surgeon two weeks ago to go over any questions I had and to review what my options were. Maybe I was going in more open-minded or maybe my surgeon was more clear about it all this time, but she seemed quite concerned about any risk that could possibly postpone my radiation. Yes, the expander/implant procedure at the time of my mastectomy could work smoothly, but with my small frame, there may not be as much 'cushion' to support them, which poses a risk for open wounds and needing to go back in for more surgery before radiation could even begin. Adding the step of reconstruction simply means a more extensive surgery, meaning more risk for infection, as well. We really just want to avoid any possible complications and ensure that we can begin radiation as quickly as possible! Ultimately, we worked together to decide that delaying reconstruction would be my safest decision. The reality is, I have a metastatic disease and I need to focus on saving my LIFE before saving my BOOBS!

I was having a hard time deciding on a plan for reconstruction before that appointment. Nothing was really settling well with me and I just wasn't happy with any path I chose. I think I was feeling forced to make a decision about reconstruction while still grappling with the fact that I have metastatic breast cancer that I need to take care of! The whole process was feeling rushed, but as soon as I left that meeting with my plastic surgeon and decided to delay reconstruction altogether, it was as if a HUGE weight was lifted off my chest (no pun intended!) I knew I had made the right decision. I had told so many people of my plan for immediate reconstruction, but I wasn't concerned about that. It's OKAY that I changed my mind. This is my life we are talking about and I don't care how many different directions I spin in, I am doing everything I possibly can to make sure I end up in the right place. For now, I can focus on getting rid of this cancer and then, I can worry about the way I look when I am ready. One step at a time.

Now that I made a decision on the type of surgery I would be getting, I also had to figure out what I needed to have in the house for myself during the time I am in recovery! I was told time and time again that pillows are KEY! Pillows for under my seat belt, under my arms, across my chest, in my bed, on the couch, everywhere! Some people mentioned getting a wedge, or a 'husband' pillow, but I was gifted a U-shape body pillow from a friend I know who went through a similar procedure that I am going to try. I'll update you on how it goes! I also needed to think about what to wear...and unfortunately it won't be my fancy blue jumpsuit (please refer to my NYFW post from last month)! I will not be able to lift my arms much, so I stocked up on button-up tops and zip-ups to easily slide on. I was told camisoles are good, too, if you can step into them and slide them up. For the first few weeks, I will have drains for excess fluid that comes with having this type of surgery, so I also needed to consider how to manage these. I've seen different products out there to help like lanyards, shirts with pouches inside them, and little belts you tie around your waist. Lucky for me, I follow a page on Instagram (@breastinpeace_) that promotes different products people all over the US are willing to donate that they've used during their mastectomies. I commented on one of their posts that included a drain belt, a hospital gown, a button up t-shirt, a tote bag, and a bracelet, and received it within a week! It was perfect! I didn't want to spend so much money for something so temporary. I am also very fortunate to have a local friend who went through this treatment process not too long ago and is also willing to pass along her favorite products that saved her during this step!

With all of the stress and planning that goes into the mastectomy phase of treatment, it's been kind of nice to enjoy this 'time off' with my family and friends. Since my last chemo over a month ago, I have had one infusion of Herceptin/Perjeta that lasted just 2.5 hours with zero side effects! Unfortunately, there's no wiggle room with the timing of this treatment, so I will need to go back for another round less than a week after my mastectomy...joy. I also received my first Zoladex shot just to the left of my belly button that puts my body into menopause and ensures that I do not produce any estrogen to fuel this ER+ fire. This also gave me very little side effects besides hot flashes, acne, no period, and no chance of pregnancy. Oddly enough, outside of these visits, I feel as if I'm cancer free! It's nice to feel somewhat normal again, but it's quite the reality check that behind all of these 'normal' days and big smiles, is a mind thinking about mastectomies and radiation, and a young woman's body still fighting off cancer.

As I get closer and closer to my surgery date, I am becoming more and more anxious about it. Last week, I was quite confident and not worrying about it at all, though. My mind was focusing on surprising my mom for her 60th birthday and getting ready to celebrate my "Boob-Voyage" party that my friends had been planning at Hooters. That's right, a party at Hooter's to give a final farewell to my boobs! I have some pretty kick-ass friends! It was such a fun girls night filled with lots of smiles and laughter, Passion Fruit cocktails with proceeds donated to breast cancer research, a DIY photo booth, and an incredible boob cake! I am so grateful to have so many wonderful women in my life that are ready to celebrate every chance we can get! We stick by each other and lift each other up during difficult times, and it truly makes this crazy life so much easier! This is the kind of tribe everyone needs!

So, it's finally here. Tomorrow is the day I go in for my bilateral mastectomy. As nervous as I am, I am so ready to get this thing over with so I can begin the recovery phase! I keep telling myself that this is all just temporary. I will be sore and this will be painful, but this too shall pass. I have warned my kids that Mommy may not be able to play with you like she usually does but everything will be back to normal before we know it! I am so grateful for my family and friends who have shown their support and offered anything and everything to make this recovery process go as smoothly as possible! I honestly don't know what I would do without such kind people in my life. Let's do this thing!

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!