The 13th Day

It's really hard for me NOT to question most things...especially in the medical world. But let's talk about the only spot-on, 100% guarantee a person can bank on during this journey: a double mastectomy is a total world of suck for the first 3-4 days. Believe it. Accept it. Don't be a hero. Religiously rotate whatever pain management drugs you can tolerate and push through those first few days like a zombie boss! It downright stinks. Just when you think you can't take it anymore, the switch flips and things get so much better (even though the dreadful drains still exist). We had family come through town on day 4 and I was able to rally for a public dinner outing. My husband's oversized button up shirt was perfect for the occasion...and yes, I got the idea from Pinterest.

I may have done it all in slow-motion, but getting out was the perfect healing medicine. I strongly encourage others to do the same! The change of scenery, social interaction, and fresh air make all the difference both physically and mentally, but keep in mind that there are still plenty of "rules" to follow from the minute you leave the hospital. The post-op packet is rather thick, so I'll summarize to save paper:

Begin walking ASAP and often to avoid blood clots, no showering for 48 hours, then daily showers with unscented soap, milk the drain tubes & empty the bulbs every 8-12 hours, document fluid amounts (drains must remain in place until total daily quantity is <30ml), back sleeping only for at least 2 weeks, no stomach sleeping for at least 8 weeks, 7-day antibiotic to reduce risk of infection, meds as needed for nerve pain, meds as needed for constipation, surgical bra must be worn 24/7 for at least 2 weeks, then 24/7 front closure sports bra with formed cups, no bras with underwire for 3 months, no lifting over 5lbs for 6 weeks, no raising arms above shoulder height for 2 weeks, no driving for at least 2 weeks or before regaining full range of arm motion, no MRI's with tissue expanders...

The post-op guidelines are very easy to follow during the first 2 weeks...the drains are a constant reminder of the limitations as they are quite literally sutured to the skin at their exit points. There are some other lingering post-op discomforts...my throat was raw for days from the intubation. My voice was also very weak and deep breaths were not my friend. I didn't, however, experience any of the nerve pain that I was warned of. Sleep wasn't great, but it wasn't awful--there is no magical pillow to help with this problem! I would just recommend having an extra pillow or 2 nearby for the first few weeks. I used one as a bumper so that I wouldn't roll over in my sleep. All-in-all, I found it easy to rest, which is usually difficult for me. My body & mind allowed me to fully surrender during this time...to just heal. I didn't realize how much I needed that until it was my only option.

My sister came into town to help out with my 2 nieces in tow. While we have so much support here, my mom also was scheduled for a full knee replacement shortly after my surgery...The "Sister Momma Auntie Caretaker of 2024" award goes to Emily! I had frequent follow-up appointments back in Pittsburgh, which Ryan had to take me to as well. It was so great to have the seeeester around, to witness Kanon spending time with his cousins, and to have the extra set of hands while my mom prepared for her surgery.

I left my 1-week follow-up in Pittsburgh with 1 less drain. The little wins were exciting. The remaining 2 drains were then removed at my 2nd week follow-up, which was on the 12th day after surgery. I still had some fluid collect around the expanders after the drains were all completely removed, but my doctor was able to extract it at my 3-week follow-up. In the meantime, we had the 13th day...

Day 13 post-op was our Kanon boy's 1st birthday. It was a day my momma heart simultaneously grieved over and longed for. I looked at his first birthday as a celebration of more than just Kanon turning ONE; it was a parenting celebration as well. We did it! We made it through fertility issues, 2 cancer diagnoses, and a pretty rough start to parenting with a difficult baby. The month that Kanon started sleeping through the night was the same month of my diagnosis. God knew I couldn't handle both. I was so ready to celebrate...yet reminded that my party planning days were at a slight standstill. Decorating & set up does require some heavy lifting and the use of ones arms, after all. It was difficult for me to accept that we'd have to scale way back and keep the party small, but we made it work.

We had around 20 people over--some family and a few close friends. The weather was perfect to be outside in our backyard. We had food delivered from a local pizza shop. Ryan's parents made the Sam's Club run for drinks and grabbed the cupcakes I had ordered from a local bakery. The bakery even made some special ones for Kanon to keep the sugar content low. A few pop up tents, tables, chairs and a water table for the kids completed our party prep! The water table was actually an early birthday gift from Aunt Em--a total hit for our boy, who was an active sweat ball all the time! The bigger kids kept refilling the top of it for endless waterfalls, spinner wheels, and splashing. The dogs ran around eating every dropped crumb they could find. All of my anxiety leading up to this day was silenced by the laughter and joy of the party.

As we all spent the afternoon celebrating our little guy, I received a phone call about my pathology reports. My doctor was out of town, but her PA delivered the news. It was a conversation that tanked as fast as the cupcakes were eaten by my nieces...

My initial tumor size was as expected (29mm/2.9cm/1.14in), but they discovered two additional foci of tumor each measuring 4mm/.4cm/.15in. Let's pause here for a minute...There are a lot of great things that can come out of Breast-Conserving surgeries for early stage Breast Cancer; women get through this mess feeling more like themselves, less risk of infection, no implant toxicity or illness, etc. As I previously explained, there was so much to consider while selecting a surgical route. I'm so grateful to have found a surgical oncologist who was completely unbiased in her presentation of my options. I even asked her what she would do if she was me...and she did a great job of diverting the question. As overwhelming as it was to have to make these decisions early on, I'll always be thankful for her approach and for indirectly forcing me to dig deeper for my decision. I do believe that there is nothing stronger than the will of God and our very own intuition that He has given us. Had I opted for a lumpectomy/breast conserving surgery, the other two foci tumors would've been left behind in my body. I would've had to depend on radiation to hopefully eradicate them. This was still a bit shocking to hear that the cancer had spread beyond the initial lump that I found. What did it mean? Was it more aggressive than we thought? Had it been in there undetected for that long? The questions came into my mind faster than I could ask them...not to mention, I was in the back corner of our yard on the phone with a party of 20 people just a few steps away...She went on...

My Estrogen & Progesterone receptor levels were still similar to the initial biopsy report. My Ki67 proliferation index, which was 60% at biopsy, came back at 20%; however, it was unclear if that was per the 2 additional foci tumors or the main tumor. My HER2 was equivocal. This meant that a HER2-FISH test was in the works to determine that it was still HER2 Negative breast cancer. We wouldn't know this result for about 2 more weeks, which is pretty deflating when the expectation is that the long-awaited surgery should be the ticket to MORE CLARITY! I also knew that my Oncotype couldn't be run until they had all the tumor tissue, and the equivocal HER2 result was sure to hold that up. Reason, you ask? Because if my HER2 was actually positive, I would officially be a "Triple-Positive" breast cancer patient instead of an "HR+, HER2 negative" patient. The Oncotype test would no longer be necessary in this case, and Chemo would automatically be suggested. In HER2 negative, premenopausal patients, an Oncotype score above 16 is considered high for recurrence, so typically chemo is the suggested standard of care. I was annoyed, but the info was tolerable up to this point. I was sure she it wouldn't get worse as she continued:

The sentinel node biopsy of the two lymph nodes both came back positive for invasive ductal carcinoma, measuring 6mm & 4mm. What!? I made her repeat herself. "Yes, it was very surprising to see that on the report," she said. "We weren't expecting to find node involvement." My heart sank. With the ultrasounds and MRI ruling out node involvement prior to surgery, I was so sure that this wouldn't be a part of my story...until it was. One of the main reasons I chose the mastectomy route was to avoid the radiation. I still to this day can't accept the fact that the talk of radiation came into my picture (more on that later). But it suddenly all felt so much more scary to me. What was I supposed to do moving forward when I couldn't trust in the technology that was supposed to help guide me? What the heck was going on in my body that got me to this point? It wasn't just cancer anymore for me...it was as though the control I thought I still had over my body was suddenly swept away. I felt like I was living inside of a tornado. Have you ever read about what it's like to be trapped inside of a tornado? It's described as being chaotic, yet "still as death". It's hard to breath, yet the air is so smooth. The blows keep coming and no one knows when it'll end. This call, on day 13 after surgery--on our only son's first birthday, brought a tornado into what should've been a beautiful day.

I finished the phone call and couldn't contain my emotions. I balled like a baby in the back of the yard. There was no way to even try to hide it. Ryan came out to console me, and I explained the news. I needed to walk past everyone to get inside the house to pull myself back together. Cancer reared its ugly head worse than I could have imagined, and the road ahead seemed so daunting, but I had a birthday boy to get back to first...and he was the reason I went back outside and put on my best happy face.

As hard as it seems in these early days of treatment, I promise that it becomes more and more clear; the way to win is to Keep Showing Up!