Catching Up - The Whole Story

It took me a few weeks to decide I wanted to launch this blog so I’ll get you caught up and what has been going on since my unofficial diagnosis on 12/20/18. For some reason reading through other survivors’ accounts gave me a lot of peace when I was first diagnosed so I’m doing my best to make this as detailed as possible! Here is goes:

Mammogram and Biopsy:
The day I found a lump I called to make an appointment to get it checked out at Solis Mammography in Lewisville. I was positive it was just a harmless cyst since I’m only 28 and had no immediate family history, but I wanted to get it checked out quickly so I could gain some peace of mind put it behind me. A few days later I drove out to Lewisville and had an ultrasound to check out the lump. After about 15 minutes with the technician a doctor came in and said “You don’t want me to sugar-coat it do you? It’s cancer.” I had a complete meltdown in the room. It was the most overwhelming and isolating moment of my life. I asked the doctor to give me a moment alone and called my mom in tears. She cried with me and called UT Southwestern and set up an appointment for me to get a biopsy within the next couple of hours. I walked outside and called my husband, Xavier, to tell him the news. He hopped in an Uber (my car was in the shop and I’d taken his) and when he arrived we hugged and sobbed outside the hospital. I’ll never forget that moment. We pulled ourselves together and got in the car to head to my appointment at UT Southwestern. My mom, dad, and sister all left work and came straight to UT Southwestern to be with me. My mom came back to the exam rooms and sat with me as I had ultrasounds, mammograms, and a biopsy done and a radiologist confirmed that it was likely a malignant tumor. It was a whirlwind of a day and I knew I’d hear more about the details of my cancer about a week later.

Waiting for details and a plan has been the hardest part of all of this so far. Knowing you have cancer but not having a grasp on what kind, what stage, whether or not it has spread, etc. is really terrifying. You wonder what life will look like from now on and if it will ever be the same. There was a lot of fear and sadness in those days but they were also so sweet because I knew I’d be starting some sort of treatment soon so I did my best to be out with friends and family as much as possible. I made a choice not to Google anything during this time and that is a decision I am so glad I made. I made plans and kept myself distracted. I spent a LOT of time in prayer and learned a lot about God’s peace.

Biopsy Results:
I got the results back from my biopsy: I had a 2.7 cm Grade 2 IDC ER+/PR+ Her2 + tumor. I had appointments set up with my surgeon and oncologist and found out I’d have neoadjuvant chemotherapy (chemo before surgery) and I decided to do a double mastectomy afterwards. I learned all about what chemo and 5+ years of hormone therapy could do to my body and was advised to make appointments with fertility. I couldn’t believe Xavier and I had to tackle a cancer diagnosis and infertility at the same time but we didn’t have a lot of time to dwell on it. Having a family is important to Xavier and me so we did an egg retrieval and froze 2 embryos. I honestly didn’t have a great experience with fertility and didn’t get the results I wanted. I will do a full blog post on this later!
I started chemotherapy (TCHP) the day after my egg retrieval. A few weeks before I started chemo I went public on Facebook/Instagram about my diagnosis and felt so encouraged by the way my friends and family responded. Xavier and I got countless letters and packages in the mail. We received deliveries of flowers, treats, and self-care items. Friends booked flights and flew across the country to spend time with us. I was encouraged and prayed for by so many people, including acquaintances I hadn’t seen in years and people I didn’t even know. It was completely and wonderfully overwhelming! The outpouring of support made me feel like I had an army of people fighting with me.

Chemo Round 1:
I was ready to start chemo and get rid of this awful disease. When I arrived at the hospital for my first treatment I had a gift delivered to my infusion room— My sister and a few friends had put together a sweet bag of things to get me through my first round of chemo. It felt so good to be thought of on such a daunting morning. My first round of chemo was a 6 hour day and Xavier, my mom, and my sister sat with me the entire time. We ordered in Zoe’s and my sister brought a big bag of board games for us to play but once the drugs started I was pretty out of it. We also had a technician from Chemo Cold Caps in the room teaching us how to freeze my hair follicles so that I could save most of my hair (I’ll do a post on this later as well). It was a long day but I felt fine after the infusion. I was so excited! This didn’t seem so bad after all.

It took 5 days for the side effects of chemo to kick in. Everything I’d read said that most of the side effects would occur over the first few days so I thought I was in the clear but I was terribly wrong. I started experiencing nausea, vomiting, diarrhea, fatigue, mouth sores, and rashes over the next 7 days. I had to go in twice for IVs. It was awful but Xavier was unbelievable throughout the whole first round. He took care of me in more ways than I can list.

After day 12 most of my side effects subsided and I had a little over a week to enjoy myself before the next round. Xavier and I got dressed up and went out every chance we got!

Chemo Round 2:
When I went in for appointment before round 2 my oncologist was thrilled. My cancer was much smaller after the first round of treatment! This is a sign that the chemo is doing it’s job. She explained to me that she had to cut back the dosage of chemo I was getting because my side effects were so bad. I hated to hear that because I didn’t want my weakness to lead to less aggressive treatment and a higher risk of recurrence in the future but she assured me that this was a better plan and that she felt confident the regimen would still work since I had such a good response the first time. I went into my infusion room and had another gift waiting for me from the same group of girls. It brought me to tears and I felt encouraged all over again My second round only took 3 hours and it was a special experience because my best friend Liz came in from Chicago and stayed in the room with me along with Xavier and my mom. My side effects hit around day 4 and lasted until day 10 but they weren’t nearly as tough as round 1. I’m currently 6 days away from round 3 and I’m soaking up every bit of this week since I finally feel good!

That’s it! You’re all caught up! I’ll continue to post as I go through treatment. Everyone’s experience is so different but I hope this helps if you’re in the early stages of treatment. I’ll keep you updated!

hilary schleier