learning to be a patient patient

Being grateful isn’t hard for me. It has always been easy for me to see how blessed I am. Even through this journey, finding things to be grateful for hasn’t been hard. I have written about how cancer has changed my life in an awesome way and although this is a difficult path, I’m glad I get to walk it. God continues to bless me and my family in ways I never could have imagined. BUT, one thing that has never ever, ever never (seriously never) come easy to me is patience. Just ask anyone in my family, any of my friends, anyone who has ridden in a car with me, anyone who has worked cattle with me, or anyone who has had contact with me in the last 15 days. Since surgery I have spent days with that word bouncing around the walls of my brain. I’ve tried bending my mind in ways to make myself be more patient and understanding of the trauma my body has endured. I’ve prayed about it, I’ve talked to people close to me about it…I’ve even talked (out loud) to myself about it. But seriously, I am not a patient person. Cancer has taught me a lot of things, but through cancer the Lord is showcasing this like a neon sign—Katelyn you are not patient. In everyday life, I’ve never been a patient person and now, I am not a patient patient.  It has always been my nature to take everything happening in my life head on. I deal with things immediately and move forward. I have rarely asked the “why me” question after being diagnosed at 26—but I do ask “why is this taking so long??” Initially I didn’t want to do the PARP inhibitor trial drug because it added six more months to my treatment schedule. I am so thankful for my patient, smart and investigative husband who looked tirelessly into this magic drug that I’m now so very grateful for. See how easy it is for me to throw that word around!? Patience is the biggest and most difficult lesson I think I will learn through my diagnosis. Showing patience toward others is one thing, but having patience with myself has proven to be extremely difficult post-surgery.

I spent the entire evening of April 25 coloring (haha!) and I tried to remain completely calm. I understood this was happening whether I liked it or not, there was no point in thinking about it too much or worrying. I’ve felt the Lord clearing the path for me through this entire journey and I went into surgery feeling completely at peace. But not without a lesson from the good Lord first. We got to the surgery wing at MD Anderson at 10:00 a.m. on the 26^th. I assumed they would take me right back to a surgery suite and begin prepping for surgery. Not the case. We sat in a waiting room for TWO HOURS. I have no patience, y’all. I realize MDA is a huge hospital—my procedure was in surgical suite 30 so who even knows how many of those rooms they have, I’m going with way more than 30! But waiting to get the party started was so incredibly difficult. They finally called my name and after being so anxious/ ready to go, I really wasn’t all that excited to go. Cade and my mom went back with me. Once we got to the prep room, it was a lot like a NASCAR pit. I got medical ID bands on both my arms and legs, just so we all knew for certain at all times who I was. It seemed a bit excessive, but I was fine with it because I didn’t come out missing anything except two boobs. Surgery lasted about four hours. One thing we have all learned about me since September, I handle anesthesia exceptionally well. I wake up like I’ve taken a glorious nap and I’m ready to get up and go shopping or something. The nurse in recovery couldn’t believe how quickly I woke up and I was transferred to a room before all the other patients in there with me. See, having no patience is a virtue sometimes! I ate dinner, and was walking by 9 p.m. I was discharged from the hospital mid-morning and we all went back to this super cute house I found on Airbnb.  The anesthesiologist had recommended a nerve block that numbed everything in my shoulder/chest region for five-ish days. That was a great decision, I was never in any pain. I had an incredible support system in Houston. My parents, my husband, my sister and my aunt showered me with love, made me laugh and helped me through those first days. I can never thank them enough for the unconditional love they provided then and now. We stayed in Houston until Saturday just to make sure there were no complications. I was so sad to leave our precious house, but I was ready to get home.

My parents, Cade, my cumbersome drains and myself made the two hour drive back to College Station as my sister and aunt flew back to Colorado. The first few days were pretty easy. I was (mostly) patient. I rested, I did my (tiny) exercises, we emptied my drains twice a day, I watched movies, I went for walks, I let people bring me food and water, and then it got old. By a week post surgery, I wasn’t taking any pain medication and I was ready to get back to “normal.” But I still had three drains coming out either side of my armpits. You can’t really be normal with crazy tubes coming out of your sides. I understood their purpose but I hadn’t mentally prepared to have them for more than 10 days. Lesson number 399 in patience was in full effect. It seemed God had made everything so manageable for me up until this point. I just assumed He would help a girl out with the drains. That’s where I was wrong. I needed time to practice patience. The drains aren’t terrible but they seriously limit what you’re allowed to do. No raising your arms, no lifting, no sleeping on your sides, blah, blah, blah. I wanted so badly to curl into a ball on lots of days, but instead I had an inverted wedge pillow I had to sleep on. I looked like a broken lawn chair…you know the kind you sunbathe on? I was in that position for what seemed like forever.

Some may think I’m unusually upbeat on here, or that I had an odd perspective on cancer. Let me just say this, by day eight post-surgery, I had a good cry and I let myself feel a lot of dark feelings and it took me a few days to get out of it. I’ve found if I just stay positive and find the blessing in the mess my mental health and my attitude are so much better. I got two of my drains removed May 8 and had the last one removed May 12. I was more nervous to get the drains out than I was for the surgery. My nurse was so confused by this statement. Y’all, I love anesthesia, I think it should be used for everything. I wasn’t super nervous for surgery because I was knocked out. I’ve been wide awake for three biopsies and a port placement. I know medical professionals would like me a whole lot more asleep. When I’m awake I have an urge to punch them (I never follow through of course) but holy shit, some of that stuff hurts! Honestly though, I was way too worked up for the drain removal, the most painful part was getting the tape/gauze off the site. Another thing we’ve learned about me, tape loves, loves, LOVES my skin. It’s awful. Once the nurse got the tape off, she clipped a stitch and pulled the drains out, that part didn’t hurt at all—I was all worked up for nothing, imagine that. I still would have preferred anesthesia though. Since all the drains are out now, I’ve been working hard get my range of motion back. I’ve met with PT twice and Cade has become my at home physical therapist. He’s great, I think maybe he missed his calling. I have had to work really hard to loosen my muscles back up. Initially, I just thought I would throw my elbow up past my ear, do a good stretch and I’d be ready to go. That is not the case, but I can see progress every day and that’s exciting.

We had a follow up appointment with my surgeon May 8. I’m healing wonderfully. I’m so grateful for Dr. Hwang and her magical hands. I never bruised and I’ve had very little pain or swelling since surgery. She is the best! They didn’t have my pathology report that morning, but her office called me late that afternoon with results. I had a complete response to the trial drug! The tumor was dead and after testing all my lymph nodes taken from my armpit they were all clean! I know ultrasound indicated this before surgery, but it was such a relief to know for sure. Sometimes when it’s hard to understand why this happened to me at this point in my life, I realize it had to happen now so I could be treated at MDA and so I could get my hands on this drug. What an incredible blessing this has been! So, because the PARP inhibitor is only a phase II drug, (there are four phases total before FDA approval) I still have to move forward with traditional cancer treatments, but this could be a huge breakthrough for other BRCA patients. The driving force behind me agreeing to participate in the trial was the hope of helping those who come after me. I pray this PARP inhibitor will one day replace chemo for women facing this diagnosis. However, long term effectiveness is still unknown (that will be addressed in phase III) so my oncologist still recommends 20 weeks of traditional chemo. I’m really OK with this because I don’t want to worry about a reoccurrence for the rest of my life. Even though I had both breasts removed, if there were still rouge cancer cells in my body, breast cancer can reoccur in places like your bones, lungs or brain. I’ll start with weekly Taxol for 12 treatments beginning May 26 then switch to four treatments of AC. I should be done with chemo around the beginning of October. I still haven’t decided what I want to do about radiation, it is recommended because it is standard care, but I’m still trying to weigh long term side effects of radiation vs. benefits of treatment.

Today is my birthday and I have an entire new outlook on life and how lucky I am to have another year. Today and every year on this day from here on out, I will complete seven acts of kindness as I try to make the world a better place. I’m so grateful for this life I get to live and the amazing God I serve.