It Can't Always Be Good

There’s been a whole lot going on over here both in my personal *and* work life since my last email went out. It's crazy how much can happen in such a short amount of time!

Where do I start.

Well first, we hired a website designer/developer late last spring to makeover our website and migrate us over to a new website hosting platform. It is leaps and bounds better! There are so many more amazing e-commerce functions with the new site on both the customer side of things AND the back end. It’s been a bit of a learning curve, but we’re getting there! Then in November, the site launched, the holiday season hit, and we switched email platforms. Did you notice that you stopped receiving emails from me? Well, there’s a learning curve to the new email platform too and just when I started tackling that after the new year, BAM – I was diagnosed with breast cancer.

If you follow along on Instagram, you may have seen what I’ve shared in stories. I decided early on, for a multitude of reasons, that I wanted to be fully transparent about my diagnosis and the full process. I can appreciate that social media is generally more of a highlight reel for people and that they mainly share the more “camera ready” moments, but personally, I prefer the real and raw. The view into someone’s seemingly flawless life doesn’t actually do much for us when we're scrolling. Sure, I’m here for the curated photos and the pretty aesthetics as much as the next person, but I’m also gonna need some substance as well. If that’s you too, let's be friends!

Deciding to share something so personal and difficult was honestly a much easier decision than I would have thought. I have seen SO much good come from us sharing our infertility journey (which was equally as devastating as this new one), and I knew that if one person saw the “CANCER” highlight on our Instagram profile and it made them advocate for themselves, putting myself out there would be entirely worth it. Is it a vulnerable position to put myself in? Yes, a bit. But it has honestly been good for me. I've found myself taking down the walls that I've had in regards to sharing on social and I'm happy about that. I have been met with an outpouring of love that I would never in a million years have expected – friends, family, customers, old and new “followers” (I really dislike that word – it feels so impersonal) on social. There has been an abundance of prayers, positive thoughts, well wishes sent to our family over the past couple months and I have to tell you that it has really restored my faith in humanity. There is so much negativity in the world, but I have been shown that there is still so.much.good. It has been overwhelming in the most amazing way and I am grateful to each and every person in my real-life and online circle.

Let’s just dive in.

Back in June of last year (2022), I felt the tiniest lump in my right breast. Smaller than a bb, it had irregular edges, and was seemingly new. It felt exactly like my grandmother’s breast cancer tumor that I had felt 20+ years ago. I did self-exams occasionally, but not regularly. I knew this lump was new and that the irregular edges felt all too familiar. I knew in my heart that it was cancer.

I reached out to my neighbor for an OB recommendation as mine had moved away during covid. I was connected with an incredible local OB that got me in right away. She sent me off for a mammogram and ultrasound that was scheduled for the following week. My husband accompanied me to our local breast imaging center where I sat patiently in my gown in a tiny little room waiting to be taken back for imaging. First a mammogram, then an ultrasound.

The radiologist that read my images entered the ultrasound room and told us that he couldn’t see anything on my images and that we could go. My husband and I looked at each other and then simultaneously pushed back on the radiologist, letting him know that I have a family history of breast cancer and that we should look closer because there was most certainly something there. He adamantly told us that “there’s nothing there – I SEE NOTHING.” And just like that we were shut down and I started to completely doubt myself. Obviously I was overreacting. I was being a complete hypochondriac. There was no other explanation, right? We left that appointment and I remember wanting to feel relieved, but I felt what I think so many women feel when they’re blown off by medical professionals. Complete defeat. I knew in my heart that something was not right, but all it took was one male doctor refusing to listen or check the images again to make me completely second-guess my gut feeling. I can tell you that this experience has made me certain that I will NEVER allow that to happen again.

Fast forward to September when I went back to my new OB for my annual pap. She felt the lump again. We talked more about my experience with the radiologist back in June and she asked me to go in again. She sent a referral to an oncology clinic in the area and gave me a number to call them if I didn’t hear back by the end of the week. With no phone call by end of day Friday, I called and left a message on Monday. Then again and again the following two weeks. No calls back and we are now nearing the end of October. I called my OB’s office to follow up. The person that I talked to said that she would call and find out what’s going on, but that they are most likely not taking new patients until the new year. It seemed odd to me that no one at that oncology clinic would just call to tell me that so that I would stop leaving them messages, but I don’t have any experience with cancer so who was I to question this? I certainly had no idea how these places operate.

The holidays rolled around. I was knee deep in prep for this busy season in both work and our household, and considering that I was assured it was "nothing" at my last appointment, I wanted to put it out of my mind. I’m 40, healthy, and the radiologist said I was fine – I sang that song to myself daily as my husband questioned the status of the second mammogram and ultrasound.

We were on vacation after Christmas and my husband said that the minute we got back into town after the new year, my one job was to get to the bottom of this mess and figure out why no one was getting back to me. So I did. I called my OB right after the first and told her what had been happening. She had no idea that I hadn’t been contacted. Once she got involved, I was scheduled for a follow-up mammogram and ultrasound that was to take place on January 12^th. I wish I had been the squeaky wheel much sooner.

Once again, I sat in my gown in a tiny little room, waiting to be seen. First the mammogram, then the ultrasound. Thankfully, it was a different radiologist on shift that day and she pointed out on the screen that yes, there was indeed a tiny mass in the outer right quadrant of my right breast and asked if we wanted it biopsied right then or if we’d prefer to come back. I was kind of shocked, like do people actually leave without a biopsy when a suspicious mass is identified? Apparently, it happens often and people will come back only after it’s too late. Please don’t be that person.

My husband spoke up and said “we are definitely not leaving here again without getting to the bottom of this” and a biopsy was being performed minutes later.

The next day, on the way to pick-up my girls from school, I got an email that my biopsy results were available in my online health portal. I opened it, scrolled, and saw the words “malignant tumor" and "carcinoma”. I scrolled back to the top and had to re-read. It was impossible. Again, I was 40, healthy, and the first radiologist said it was “nothing”. I read it over and over. This was certainly not "nothing". My suspicions were right all along and I felt like I was going to be sick.

I called my husband who had gone to shift that morning. He was at a department training and I had to break this horrific news to him. He knew when he picked up the phone and I didn’t speak. I honestly just couldn’t even form words. Every awful thought was racing through my head. I’m so young. My KIDS are so young. We worked too hard to build this beautiful life and have these babies to have it all be ripped away. I was reeling and in shock.

Through choked back tears, I quietly uttered “It’s cancer.”. And in that moment, my husband was on his way home and I was pulling into the school parking lot, trying to find my hat and sunglasses so that my kids wouldn’t see my tear-stained face and puffy eyes. The life we knew before that moment had ended. Everything from that moment on would be different and there is no escaping that harsh reality.

The days after that were brutal. My oncology appointment was moved up, so we had 5 days to wait instead of 10, and thank God for that. Five days was torturous enough. The repeating thoughts of “Is this the end? Will I get to see my kids grow up? What about all the plans we have for retirement?” Tears roll down my cheeks as I type this. I can feel all of those emotions again. It’s been two months since finding out this horrific news, yet this feeling is as strong as it was then. I have seen three women my age with young kids in the past few years lose their lives to breast cancer not long after their diagnosis. I pulled out our life insurance policies. I started making a plan for my husband regarding our finances. I clung to anything in those moments that I could control.

The next day, I felt another lump in my opposite breast. My future felt grim. I was a sobbing mess. My husband came home from an errand and I told him what I had found. We sobbed together. The worry, the fear. It’s completely crippling.

The day came that we were able to meet with my oncologist. After waiting 2.5 hours, we were ushered back to a room where we sat and waited some more. I can appreciate that medical professionals spend more time with patients when it’s needed and that can cause delays for other patients when that happens, but let’s be honest – no doctor is expected to sit and wait for a patient that is running 3 hours late to their appointment. Vanishing referrals, unreturned phone calls, endless waiting to be seen … it was all very underwhelming.

Once the surgical oncologist finally came in, she was fantastic – her energy was high and she was telling me all the things I wanted to hear. The tumor was tiny, it was the most common type of cancer, we were going to treat this, beat this, and move on. The confidence she exuded was contagious. We felt so hopeful and optimistic leaving that appointment. Also, hungry because we had been sitting there for so long.

Appointment after appointment, genetic testing, blood draws, phone calls, another mammogram, ultrasound, biopsy, then an MRI. I tried to keep negative thoughts at bay. An emotional rollercoaster of epic proportions and you don’t get to step off when you feel sick and can’t take anymore. Around and around we went.

Good call, bad call. Great call! Nope. Too good to be true. We were given the news after my MRI that my left implant had ruptured. That was unexpected, but we could get that taken care of. We were told that based on the tumor specifics and the MRI results, there was no sign of spread and I was a candidate for breast conserving surgery (lumpectomy) and that I could have my implants replaced during my surgery so that I could go through only one procedure and one recovery. Amazing news and the best-case scenario given the awful circumstances. That information could not have been more wrong.

A lumpectomy comes with radiation and radiation and implants are all around a no-no. There would be no implants during radiation or at any point after because of what the radiation does to the skin and the breast tissue.

As I sat alone in my plastic surgeon’s office absorbing this information, I fell apart. It had nothing to do with saying goodbye to my implants, or at least not much. I actually felt pretty ready to part ways with them before all of this started. It was the loss of control. The loss of decision making over my body. The constant up and down of my emotions as I navigated this journey. The nurse navigator at our oncology clinic that was seemingly too distracted while working at home and delivering news to me that Friday prior to give me factual information or to understand that her words and the messages she was relaying had real life impact on another human being that was admittedly in somewhat of a fragile state.

In that moment, I listened to the physician’s assistant at my plastic surgeon’s office tell me about the different options (a lumpectomy vs. mastectomy). This was the first real information re: surgery that I had gotten. Everyone there was so kind and they operate like a well-oiled machine, much unlike my oncology clinic that seemed to be overwhelmed with patients and lacked the staff or compassion that is needed to guide people through what is very much a frightening journey. 

The PA at my plastic surgeon’s office requested that I come back in that following Monday to speak with the plastic surgeon himself and figure out next best steps. I did. I had seen him before a couple years prior to discuss removing my implants. I loved him then and I love him now.

We discussed both surgical options. We talked about the pros and cons of each. We discussed my age, my health, and my ultimate goal with this surgery. Obviously it was to remove the cancer, but also important to me was that I didn’t want to look in the mirror and cry every day. I’ve spent my adult life enjoying staying fit, staying mentally and physically healthy. I wasn’t going to let this mess change that.

Based on the above and multiple other factors (my extremely dense breast tissue which put me at higher risk of breast cancer AND the cancer being missed, the overall aesthetic I was hoping for after removing the cancer and subsequent treatment, the fact that I didn't want to have to be closely monitored and go in every six months for imaging because just the thought is anxiety inducing *especially* since my tumor NEVER showed up on a mammogram - the list went on and on), the decision was made. I would have a bilateral nipple-sparing mastectomy.

In the midst of this change, I decided that I would move to a different oncology clinic AND work with a different surgical oncologist. I actually really loved my original surgical oncologist, but there was some sort of disconnect over there that made me feel very uneasy. I know that most of this came from the nurse navigator that we were dealing with, and I knew after the way she spoke to me during our last phone call that I had with her, that I was uncomfortable moving forward if that was going to continue to be our main contact.

*Side note - I am grateful for our health insurance and the ability to dictate my own care. I will never take that for granted.

We had an appointment with another local surgical oncologist and I left feeling like a weight had been lifted off my shoulders. We were able to keep my originally scheduled surgery date – this was a big deal. We moved forward, started counting down to the big day, and it was seamless. I even got to enjoy a vacation the week prior to surgery!

The day of surgery brought a ton of emotions, but ultimately, I felt confident in my decision and I knew I was in the best hands. Both my surgical oncologist and my plastic surgeon gave my husband positive reports post-op as they each finished up their portion of the surgery. I am so grateful for those two amazing humans. Their skill, attention to detail, and just overall ability to make me feel at ease – it will be forever engrained on my heart.

My recovery has been pretty uneventful, thankfully, and has gone so much better than I ever could have expected. Yes, there has been pain, but not to the extent that I was expecting. I have also been more than pleasantly surprised with the way everything has been healing after undergoing something so major. The human body is incredible! I thought it would be difficult mentally to see this new part of me, but that hasn’t been my experience.

The morning after my surgery with my sweet girl by my side - she looks unimpressed that I didn't share my breakfast

About a week after my surgery, we received my pathology report. We were hoping for much different results than we were given. We found out that the cancer did unfortunately spread to my lymph nodes. Obviously this changes things, but we are still in the process of figuring out exactly how much. It seems that we are kind of in this grey area. The level of spread to my nodes is small – very small – but yes, still there, so we can’t do nothing. While we can't do nothing, we also don’t want to put my body through unnecessary treatment as things like chemo, radiation, etc. come with risks and side effects. The benefit needs to outweigh the risk, so we’re not taking this lightly. The good news is that I truly feel that my oncologist sees ME and not a diagnosis. This is not a one-size-fits-all situation when it comes to cancer and treatments, yet a lot of clinics and doctors just follow a protocol. There’s no thinking involved – it’s just “okay, well we do this, this, and this when someone has this type of cancer”. I needed someone to see ME and not a chart. This was another reason we switched clinics/oncologists.

We are currently awaiting results from something called an Oncotype test on my tumor. Oncotype DX is a test that predicts how likely breast cancer is to spread to somewhere else in the body (secondary breast cancer) within 10 years of diagnosis. We have discussed a loose plan for treatment, but nothing can be confirmed at this point. Once we have the Oncotype test results, we will talk with my surgical oncologist along with my medical oncologist to solidify a plan. Depending on what that looks like, we may also discuss the plan with a team at another clinic that we have reached out to, but I’m hoping that I just feel really confident in our talks about moving forward and don’t feel the need to involve more people. While more opinions can be helpful, it can also be really overwhelming and send me into that place of “analysis paralysis” which is not where I want to live.

So, for now, I continue to focus on healing and living. Cancer does not have to mean that you crawl under the covers and cry your days away, and I hope that I can do my little part to change how people view the diagnosis. Yes, it is HORRIFYING news to receive. It really is and I don't want to downplay that. But, whether I have a month left, a year, ten, or fifty, I want to spend my days enjoying this life we've built because it's pretty incredible. My husband, my kids, my business … they are everything to me. Working out, walking, my home, my dog. I am so blessed to have this beautiful life and I want to enjoy every moment I can.

Are there hard days? Absolutely. I would be lying if I said that I never break down and cry. Is it scary? Most definitely. I have had very scary thoughts and really tough conversations have been had because of it. This isn’t something that anyone wants to find themselves facing. BUT, I’ve said it from the beginning and I’ll say it again right now – beautiful things can come from horrible situations and I firmly believe that. I have already seen so much of it in these past couple months and I know that I will continue to be overwhelmed with gratitude for the things that will continue to unfold for the rest of my life because of these undesirable circumstances.

No, I never wanted this and I wish with every fiber of my being that my family and I could go back to life before the big “C”, but this is part of our world now. We are living with intention and soaking up all the moments, both big and small. Our lives are forever changed, but I'm writing my own story through this craziness, and making sure I enjoy myself along the way.

I'll keep you updated here and on Instagram as we travel along this bumpy road. Thank you from the bottom of our hearts for being here - we appreciate you so much. 

xo,

Lindsy