Get ready for a doozy my friends… here’s the story of how it all went down.
However, my story actually starts about a year and a half before my diagnosis. I moved home to Chicago in August 2016 after finishing physical therapy school and taking an extra year to do a residency, and when I accepted a job, my supervisors asked me if I’d be willing to also see patients post-mastectomy. It wasn’t something I had ever considered, but I relished the opportunity to learn something new and be helpful. Working with these patients quickly became a highlight of my time in the clinic.
Fast forward to February 2018, I was doing a self-exam in the shower (or maybe I was just soaping up, who knows), when I thought I felt something in my right breast. I’d always felt like my breasts were just sort of lumpy and irregular anyways, but this made me do a double take. I got out of the shower and asked my husband to feel it, and to my surprise, he said he felt something different there as well. I didn’t yet have an established primary care physician in Chicago (shame on me), so I began the process of finding one. I was able to finally get an appointment scheduled for the first week of March. The physician agreed that there was a lump, but thought it was likely a cyst. To be clear – I only have one distant family member that has had breast cancer, and the women in my family have been told they have “dense breasts”. My mom has had multiple lumps removed and biopsied over the years and has always had benign findings. I had no reason to worry, but I was relieved when the physician recommended a mammogram and ultrasound just in case. Unfortunately I couldn’t get in for the scans until early April. During that time, I continued to monitor the lump, and when I had an abdominal MRI (for an unrelated issue), I was able to look at my chart, and noticed that there was an awful lot of the MRI contrast collecting in my right breast. With my medical background, I knew enough to be concerned, and tried to fight the constant “what ifs” and “worst case scenario” thoughts until April came.
On April 4th, 2018 I had my first mammogram at the age of 28. Well, they actually started with an ultrasound, since women my age do tend to have dense breasts, it’s easier to see anything suspicious on an ultrasound. I intently watched the ultrasound technician’s face as she moved the wand around my chest, and on the ultrasound screen I could clearly see an irregularly shaped area right where I had felt my lump. She took me over to the mammogram room, where the scan was quick and (fairly) painless. I was then instructed to wait while they spoke to the radiologist to see if there was any other imaging they needed. A few minutes passed and the ultrasound tech called me back for another quick scan. At this point my heart started racing, my stomach dropped, and I felt myself near tears. After she finished, the radiologist came in. Fortunately, it was a familiar face, a radiologist I’d see every week during breast cancer rounds, but unfortunately she looked really concerned. “It’s a really good thing you came in when you did. I think we should do a biopsy as soon as possible.” My heart dropped into my stomach and it took all my strength to have a conversation about scheduling a biopsy without completely breaking down. I got the biopsy scheduled, let my supervisor know I’d be off the following afternoon, and met my husband in the waiting room. At that point, I knew I had to tell my mom. I’d been holding this in for about 2 months now, not wanting to worry her, but this was becoming a big enough deal that I knew I was going to need her with me.
April 5th, 2018 my husband and my mom accompanied me back to the same department for my biopsy. A biopsy was taken from the lump in my right breast, and from a suspicious lymph node in my right armpit. The nurses and medical technicians were so caring, and assured me that they were rushing the tissue samples down to pathology as quickly as they could. I went home with a thick old ice pack in my right armpit and a bruised boob, hoping and praying that my gut instinct was wrong.
On Friday, April 6th, 2018, I spent the morning treating my patients and checking my chart obsessively any moment I had a break. I should clarify that I work for an outpatient physical therapy clinic within the hospital that I was having all these appointments and tests at, and we therefore have access to our own charts. Finally at around 12:30, the pathology results were in, and I read the words “infiltrating moderately differentiated duct carcinoma,” “ductal carcinoma in situ,” and “metastatic carcinoma to lymph node.” But this time, it wasn’t someone else’s chart I was reading, it was MINE. It was me; 28 years old, barely 6 months married, still finishing fellowship, and haven’t even thought about having children yet. Shortly after that, the primary care physician called me to let me know of the results, and the breast cancer patient navigator (another great colleague of mine) called me to let me know she could get me in for consultations that afternoon if I wanted. I didn’t break down. I didn’t freak out. Somehow I treated this merely like a foregone conclusion, as if I had known all along (and in some ways, I think I had known since I first felt the lump). I continued with my normal work for a few more hours, and then headed down to the cancer center, called my husband and asked him to meet me there. I couldn’t tell him over the phone – I wanted to be with him when he heard the words. Later that evening the tears came.
The next few days I spent time making the worst phone calls I’ve ever had to make, and saying the words, “I have breast cancer” over and over; partly to tell my close family and friends, and partly to normalize the words.
From there, it was a whirlwind of doctor’s appointments, tests, scans, and second opinions. Once I made a decision on my medical team, I started fertility preservation. Egg freezing was one of the most difficult and emotional processes I’ve ever been through. We had to battle with my insurance company to get coverage, and ultimately had to apply for financial assistance through a few different foundations. I had to inject myself every single day with medication to hopefully get my eggs ready for retrieval. I had to go in for blood testing and ultrasounds every day to monitor my ovaries. If you want to talk about “overcoming” you have to talk about the fertility process. In the end, they retrieved 10 eggs, but only 5 were mature enough to be frozen. I remember the fertility nurse asked me if I could do another round and I almost burst out into tears; there was no way I could, I had to start chemo that next week.
On May 17th, 2018, I had a port placed in my left chest, and started 6 rounds of chemo, every 3 weeks. I turned 29 years old in the middle of chemo. I travelled to Indiana, Texas, Maryland, Delaware, and California, to attend 3 bachelorette parties and 2 weddings. I still worked full time, and I finished my fellowship. I don’t think I’ve ever been so tired in my entire life, but I overcame. Was I sick? You betcha. But I learned during that time how strong my marriage really is, and who I could really call a true friend. These people helped carry me through the bad days, and celebrated with me through the good days.
After chemo was done, it was onto surgery at the end of September 2018. Four days before my surgery, my husband and I celebrated our first anniversary. I worked and exercised regularly until the night before my double mastectomy. I had 8 weeks off from work to recover from surgery, but I didn’t spend as much time resting as I probably should have. I was working on finalizing presentations for multiple conferences coming up, and was trying to stay on top of the necessary paperwork to make sure my insurance coverage was intact during my medical leave, and make sure I’d be able to continue using my benefits so I wouldn’t be without an income during those two months. Having cancer is literally a full time job.
In January 2019 I was switched from Herceptin and Perjeta to a new drug called Kadcyla. My medical team is amazing and has always made sure I’m on the cutting edge of treatment, however this switch meant that I would likely now be getting infusions until October 2019, instead of the planned May 2019.
I had my tissue expanders exchanged for implants on February 8th, 2019, but not before I took my expanders all the way to New Zealand for one of my best friend’s weddings. I was so proud of myself for making it through that trip. After the exchange surgery I was sore, bruised, swollen, and my poor body looked like it had been to war. Things are well healed now, but there are likely some small revision surgeries in my future.
I am now on endocrine therapy that puts me in “medical menopause” and still getting those infusions every 3 weeks. I am regularly monitored to make sure my blood work is normal, my heart is healthy, and that this long term medication does not have any detrimental effects. This medication makes me feel stiff and tired, but when I workout, it’s better, and I now have the best motivation ever to haul my butt to the gym! I’ll be on this medication for 5-10 years.
The biggest takeaways I hope you get from my story:
-Advocate for yourself and listen to your body when something doesn’t seem right!
-When faced with these seemingly insurmountable challenges, take things LITERALLY one step at a time. Literally just put one foot in front of the other until the next step/goal is achieved, even if that’s just getting from your bed to toilet. Making a to-do list can be helpful, but it can also overwhelm you. Don’t be afraid to ask for help with any task, no matter how small.
-Give yourself grace. There are certainly going to be days when everything is just too much, and that’s okay, we all have them. Give yourself the time and space to lean into those feelings and process them, but have strategies ready to help get yourself going again – taking a bubble bath, doing a face mask, making a to-do list, or talking to a friend/family member/therapist are all good ideas.
-Don’t be afraid to live your life during treatment. You may feel like crap and need to take days off, but life doesn’t stop going when you do. There will be weddings, birthdays, and other things you don’t want to miss – don’t be afraid to try and make it work, but don’t be hard on yourself if you just can’t do it.
-YOU ARE NEVER ALONE – though it may feel that way sometimes, I promise there is always someone there for you.
Now… it’s YOUR turn! I’d love to hear your story – whatever parts of it you are willing to share, post in the comments and let’s chat.