How’d I get here again?

Whew. This ones a heavy one. I thought I was done writing on this blog. Done updating friends and family about my cancer journey. But here I am again. Updating everyone and using my writing as a way to cope and vent through my emotions. And boy are there a lot. To say the last three weeks has been a rollercoaster is the understatement of the century. So I guess for everyone to be filled in and kept in the loop I should start from the beginning and explain what I’m doing back here. 

Let me also just say that while this is a great way to keep everyone informed and up to date without miles of group texts that I will probably forget to respond to, it is also a great way for me to work through my feelings that sometimes I don’t recognize until I’m writing. Recently,  I looked back at the first post I wrote in 2018 and the emotion was so raw and real that it almost empowered me during the emotions I’m feeling now. I was able to see how broken I felt and then also able to see how much I grew and how strong I was and how much I actually overcame. It gave me encouragement that I can do it again. So I’m going to be raw. And I’m going to be honest about how I’m feeling. Not for the people reading this. Not for show. Not for pity. But for me. So that I can remember that when I was at my lowest, I rose up as I will do time and time again. And if I happen to touch a couple of people fighting the same emotions, as I did in my earlier diagnosis, then my heart will be touched knowing we didn’t stand alone and this fight of mine isn’t in vain . 
Picture it, January 2020 (in my Sophia Petrillo’s, Golden Girls {Sicily} voice.).  No one knew what the year would bring and what kind of poop storm would be stirred up with a pandemic and protests and the scary reality we are facing today.  It was a new year. And with that new year came new and great beginnings for me. I spent December taking my final dose of oral chemotherapy. I completed the first chest scan since diagnosis in 2020 that gave me the confidence and reassurance to say that I was officially NED (no evidence of disease). I never liked the word remission because it gave the implication that I was waiting for my cancer to return. And I certainly wasn’t. As far as I was concerned, it was behind me and I was learning how to get through my new normal with cancer in the review mirror.  January 18 I got the results of the scan that showed my body was cancer free and the oncologist gave me the “see ya in 6 months” farewell. It was terrifying. 6 months?! I’ve been at the hospital every week for a year. Every 3 weeks for my last 6 months of oral chemotherapy. I felt like a child being shipped off to boarding school. Bags packed, wish me luck, see ya later. And while it was the scariest thing to hear, I felt so much relief that I was healthy enough to get as far away from there as possible for an entire 6 months! For those of you new to the cancer world, when your doctor says see you in 6 months, it’s like receiving the ultimate gold star on your chore chart. I was ready to take my reward and run, with caution.  (Anyone having trouble keeping up with this rollercoaster yet? Emotions don’t make sense. That’s all there is to say about that.) 
I began making plans with plastic surgeons for reconstruction. I had several doctors appointments discussing my options, as I was told that I was not eligible for implants due to the extensive skin and tissue that was removed during my mastectomy. My options at that point were what is called a Diep Flap surgery. This is where I joke and say God made me fat during cancer for a reason. To give me bigger boobs at the end of it. The surgery basically consists of reconstructing your chest out of your stomach fat, tissue and skin. Thank goodness I never got that stomach tattoo that would later be plastered half way across my boobs. It was time to make a decision about reconstruction but that decision didn’t come easy because I was feeling baby fever.  If anything throughout the last two years, I’ve learned the importance of family. And I don’t want Raylan to be alone when Tyler and I leave this world. As you may remember we did fertility treatments to freeze embryos at the chance that I may be able to conceive once my body decided to part ways with the medically induced menopause. So the decision came down to babies first. Because who wants to get a tummy tuck and have it stretched out again? Then reconstruction. I was willing to look like a middle aged man with bad posture a little longer to grow our family.  Whew. If I knew then what I know now. 
Back to the scattered thought process that has been the last 6 months... 
From day one I had told myself that I didn’t want to make other cancer friends. It wasn’t a club I wanted to join. It wasn’t a social group I wanted to be a part of. But, anyone who knows me knows I can’t help but be social in every aspect of my life. That included my cancer diagnosis.  In August of 2019 I had the privilege to meet a group of survivors through an event that was designed to make us feel empowered and pampered. We got dressed up. We had a photoshoot for a local magazine. We got makeup and wigs and hair done to make us feel beautiful. But the thing I walked away with that is dearest to my heart is a group of women that shared their stories and their fight. We laughed. We cried. We found similarities in each other that we wouldn’t have found elsewhere. It gave us hope to see each other fight. That day forward I threw my no cancer friend rule out the window and began giving thanks for these amazing, strong, bad ass women. We later deemed ourself as the shitty titty committee. Yea, I’m not joking. You have to find the humor in everything or else you find yourself stuck feeling only the lows.  Fast forward to the following  February where one of our strongest warriors was diagnosed with a reoccurrence. It’s not my story to share, but that sweet soul and I shared so many similarities in our first diagnosis that it was hard not to spiral down the rabbit hole in fear that I could be next. I remember speaking to her afterwards and her saying she had a headache and double vision. I thought to myself, would I ever go to the hospital for a headache? What if our stories continue to align, and I don’t catch it because I dont want to overthink and be seen for something that is so common.  It wasn’t long after that we lost this precious warrior to this terrible, terrible disease. But sweet Kayla girl, you saved my life. And I will forever hold love and gratitude in my heart for you. Because of her bravery and her story, I was more aware of my symptoms. I was more dramatic in the way that I cared for myself and I advocated harder for myself than I would have on a normal basis. 
Thank goodness for friends in high places. Because I was able to make such great connections with the staff the first time around, I felt completely comfortable texting (she may say bothering, blowing up, overthinking and being dramatic.) the Prompt Care doctor in the cancer center. Kristyn heard from me multiple times a week with over the top messages ranging from a rash on my cheek to fever to a stubbed toe. Bless her for putting up with my crazy antics. Every time I’d have a tickle in my throat I would reach out, terrified that it could be a reoccurrence.  I was spiraling in fear. Around March I started noticing my vision was blurry when I would lay down. But I wasn’t too far out from a chemo that was known to be hard on ones eyes.  My body was still healing. I made plans to go see an eye doctor, and then COVID-19 hit placing that on the back burner.  I didn’t give it much thought because I had good cause for the symptom. Then one day I woke up and thought, I’ve had a headache for a couple days now. That’s odd that it hasn’t gone away. I downed some Advil and went about my day. I have a two and a half year old son who goes non stop and hates sleep. That’s a valid reason to have a little headache throughout the day. Before I knew it, it had been 4ish weeks where I couldn’t remember a day that I didn’t have a headache. The intensity would increase and decrease but with rest and medication they seemed to weaken enough to get by. I became short tempered with Raylan and found myself getting frustrated with small things that every two year old does. And then at the end of the day I’d feel all of the mom guilt and apologize because mommy’s head hurt and it made me moody.  It got to the point that I could no longer go day to day without an intense migraine so I made an appointment through my oncologist to visit Kristyn in Prompt Care. We laughed at how dramatic I am with the thought of a reoccurrence and that I was probably just like every other basic girl who drinks too much Starbucks and gets migraines. But because she knows me and was aware of my fear she ordered a CT scan with contrast to give me reassurance. I didn’t feel good. But I also didn’t think I had a brain tumor. I just wanted confirmation that I didn’t. Because of Covid-19 I wasn’t able to get the scan for almost three weeks post doctors appointment. In those three weeks my migraines grew so terrible that there were several days I thought I was going to have to go to the ER. But then I would talk myself out of it and take some medicine and go to sleep. My tourettes grew worse and the tick that I have in my eyes became unhinged. I was no longer able to hide that I had Tourettes and instead had to explain to people I wasn’t rolling my eyes at them when they spoke to me.  I was convinced that maybe my Tourettes were making my headache worse, or vice versa. So I made an appointment to get a referral to get back on Tourettes medication. Again, Covid back log, the appointment was scheduled for after the scan. There were days that I was afraid to drive because my head hurt so bad I couldn’t see straight, days I had to call for help at 6 am to come get Raylan because I couldn’t function. I was throwing up in the midst of the migraines because the pain was so intolerable. I’d lose my vision completely if I laid on my left side during a migraine. Everything would go black. It was so intense that all I could think about was getting to my primary care doctor the day after my scan to get on some heavy duty maintenance migraine medication. I needed relief. 
So here we are. Up to date on what led us to the events of the last three weeks. May 27, I wake up on an empty stomach preparing for my CT scan. My head hurts pretty bad but nothing more than it had been. I thought maybe it was nerves getting the best of me but became violently ill and trying to figure out how to settle my stomach while not being allowed anything to eat or drink. Still thinking it was scanxiety (it’s a real thing), I dropped Raylan off at my moms, giving him a quick rushed hug as I made my way out the door and told them I would be back in a couple hours. I will never again rush to say my goodbyes. After getting screened at three different check points in the hospital to ensure I didn’t have any Covid-19 symptoms I made my way to imaging. Only having one arm that is allowed to be stuck with an IV typically makes for a long process. Surprisingly the technitian got an IV started right away and I thought.. this is a good sign, wonder what I should eat for lunch. That was literally my last thought... where I was going to go to get food when I left.  The technician explained the scan and contrast process, asking if I had any other test scheduled for the day. She then explained she would remove my IV when I was done and I’d be good to go. Lunch here I come. I was so hungry it was all I could think about as I laid there. Less than three minutes later I felt her hand on my arm and saying the words “Sweetie. I’m going to leave your IV in”. My heart sank. And I knew in that exact moment that something was wrong. I sat up, with a blank stare and all I could say was “why” in a completely empty tone. With a heavy sigh she went on to say that she couldn’t tell me, but that the doctor reading the scan as it was happening needs me to go to the emergency room “right away” for an emergency MRI.  I could never put into words the sickness I felt in that moment.  The only words I could form were... “I have a baby. This can’t be happening. I have a son who needs me”. Tears burst from eyes and I was borderline hysterical.  Forgetting all Covid rules, the technician wrapped her arms around me and cried along side me. In that moment all I could think about was my sweet baby boy who I told I would be home that afternoon.  In the midst of hysteria, knowing I wasn’t allowed to have anyone with me in the emergency room I begged that they call my step mom who works at the hospital to come be with me. I was dumbfounded. I had no words. I had no grip on reality and I couldn’t face whatever was about to happen, alone. I waited in a private room for them to contact her, hysterical and trying to make phone calls to my mom and husband.  The walls are thin and right next door sat everyone else waiting for their scan. All they can hear is me crying because it was the moment I knew my cancer had reoccurred. A cancer I fought so hard to beat. A cancer that I did everything imaginable to avoid ever happening again. Within three minutes of laying on a table, my whole world flipped upside down, once again.  Once we got settled into the ER, the Emergency Room doctor walked through the door, and the look on his face said everything. He didn’t want to be the one telling me this news. He didn’t want to be the one to tell a 34 year old that within 5 months her cancer may have returned and she has a golf ball size brain tumor. 
The tumor was located on my right frontal lobe (shown on the left side of the image). The Lake Michigan looking puddle around the tumor is swelling caused by the mass. The center line, that is no longer in the center is due to the swelling, moving my brain out of alignment. 

 As I sat there in shock, my stepmom took notes and kept her poker face. As the doctor said they had an ambulance in route transport me to a different hospital with a neurological team, that had an OR booked for me at 9:40 the following morning for a craniotomy, her poker face began to fade and I knew that things just got very real. When she worries, you worry. When she cries, shit just got bad. She hugged me as I got mascara all over her white doctors coat and I could feel her start to cry. In that moment, it hit me...  I’m having brain surgery in the morning. I need to see my husband and my son. I need to hug them and tell them I am going to be okay. What if I don’t wake up from surgery? What if I wake up and forget who they are? What if I wake up and am no longer able to communicate with them? Before I left the first hospital I was informed that the hospital I was being transported to had different visitation rules. Because of Covid rules I was only allowed one visitor in the hospital. There was no switching places to see multiple people throughout the day. I had to make a choice that was almost impossible. Ultimately Tyler and I agreed that it was best for Raylan to feel as normal as possible, and that it would be better for him to stay with Tyler while my mom came to sit with me until visitation hours were up. My heart had never been so heavy. I was ready to leave the hospital with refusal of care to see my baby boy one more time before surgery. Luckily the EMT’s agreed to let Tyler and Raylan on the ambulance before I entered the new hospital location. The entire ambulance ride I was trying to compose my thoughts and emotions so that I could refrain from crying, and be strong in front of Raylan. The EMT sitting with me even said “you don’t act like someone who just got diagnosed with a brain tumor”. I’m not sure how one is supposed to act when hearing that news but in those moments it wasn’t about me and my feelings. It was about Raylan and making sure he was okay. Man, it’s true what they say. Everything changes when you become a mom. I was just told the worst news and all of my thoughts were consumed with my son. He gives me all of the fight in the world to do whatever I need to do to live. I’ve never hugged my sweet boy so tight. Fighting back tears of fear that it would be the last time I saw him, we sang our song together{You are my sunshine, my only sunshine. You make me happy when skies are grey} and mommy explained to him that I had a monster in my head that the doctor needed to get out. I held him till I couldn’t hold him anymore, and was pleasantly surprised that he thought the ambulance was the coolest thing to happen since Disney Plus.  I kissed my husband and expressed my wishes of his future with Raylan, should something happen to me. But I promised him I would fight and I would do everything I could to be home as soon as possible, for as long as possible. Of course I also demanded a really awesome vacation when this was all over. The moment they stepped off the ambulance my heart exploded with hurt. The emotional turmoil of the last 3 hours and saying goodbye to them was nothing short of gut wrenching. The heartache I felt in that moment was far more superior to hearing I had a brain tumor. 
The night was a blur. Getting settled in, making sure I had two working IVs in the same arm, test after test, Covid-19 test that left me feeling violated, x-rays at 4am, making sure everything was covered for me to have surgery at 9:40 the following morning. I was immediately placed on anti-seizure medication because of the swelling that had produced around the tumor. I had a 6.5 mm midline shift meaning the center of my brain was no longer in the center because of the swelling and pressure from the tumor causing it to move. I had been driving with Raylan in the car for months with a headache and could have had a seizure at any time. The thought of risking his life unkowingly had me in so much guilt that night that I almost couldn’t bare it. Add anxiety over having emergency brain surgery and spending the night in ICU alone because of a world wide pandemic and I was living in a nightmare.    
Fortunately I am beyond blessed with the worlds best support system. As scared as I was and as fast as everything happened, the amount of people who reached out to pray for me and comfort me with kindness and love, was so outstanding that I’ve yet to be able to respond to every message/text/call/post.  I’ll say it every time, I feel all of it and it truly gets me through each day. So thank you! 
By the next morning the Covid rules had changed yet again,  and they informed my mom that she no longer had to wait in the car during my surgery, but was now not allowed to leave the hospital if she wanted to return for the remainder of the visitation hours.  They let her sit with me in pre op and see me off to surgery which was a relief to not have to be there alone. My anxiety was sky high and all I could request to the doctors was this...Please let me wake up from surgery. Please don’t let me forget who my son is. Please let me still be able to communicate with him when this is over. 

The brain is a tricky thing and honestly you’d be surprised how many times in less than 12 hours I heard a doctor say “we just don’t know much about the brain”.   What scary words when they are minutes away from having a scalpel on mine.  Surprisingly, the thought of surgery itself wasn’t as scary to me as the potential that I could be very different when I woke up.  Fortunately, surgery was a success. They removed the entire tumor with clean margins and I was back in my room in the ICU by 4pm.  I don’t remember much but I will document this... the pain was intolerable. Prior to surgery it was noted to me that narcotics were not an option due to brain bleeding and needing me to be cognitively aware enough to be monitored. But most people don’t even need them because... Yep, “the brain is tricky”. Most people feel no pain afterwards because of the nerves in the brain not relating to the pain receptors.  However, if there is a .0001% chance that there is a side effect occurring you can bet that I’ll get it. Everything is a blur but I remember begging the nurse to do something and telling her that I had my entire chest cut off, delivered a child, went through chemo and had 3rd degree radiation burns, and had never felt the pain I was in at that time. They forced my mom to adhere to the visitation schedule and pushed her out the door by 7pm. As a mom, I can’t imagine how hard it was for her to leave my side that night knowing how much pain I was in. The guilt consumes me that my family had to sit at home wondering how I was and if I was getting any relief. I mean, who gets a brain tumor during a pandemic?! But trust that they put up a fight for me with visits to the nurses station, a few choice words and lots of phone calls.  A couple hours later I was moved to the MRI machine where I kid you not, was one of the worst experiences I’ve ever been through. The noise of the machine right after surgery, being moved from my bed to the hard machine stretcher, the pillow brushing up against my new insicion, laying flat and feeling all of the pressure of the surgery I had just had... have I used the word unbearable enough?? But the MRI was the only thing standing between me and muscle relaxers. So I suffered through with tears rolling down my face. There was a light at the end of the tunnel and the nurse was able to get the doctor to approve the muscle relaxer, which was enough to make me able to sleep through the pain. The next couple of days were more than a blur. Honestly, trying to think of the timeline feels like I’m trying to take the ACT again. There were more scans, physical therapy tests, occupational therapy tests, medications, needle pokes, and doctor after doctor in and out. Did I mention I also had to have a third IV stitched into my arm?  I was anticipating having 6 months of physical therapy after surgery to regain my strength in the left side of my body, and walking and climbing stairs, even just standing without getting dizzy and falling. Psh...don’t you all know me by now?  I’m a fighter. I walked 13 steps the day after surgery (maybe it was two days?) like a champ. The nurse even joked about me running away to the elevator to get home. No physical therapy needed. Occupational therapy, on the other hand, was a little tricky. And I’ve never felt more embarrassed then when she asked a simple math question and I could not get my brain to function enough to figure out the answer. So maybe I shouldn’t be in charge of our family finances for a while. But I’m sure Tyler is okay with me not having the credit cards and staying away from Target for a bit. Tyler was able to visit due to another change in the Covid rules and while I don’t remember much of his visit I know I was so happy to see his face. My full body CT scan came back clean meaning I had No cancer detected anywhere else in my body. The only thing left to check was my bones and that scan wouldn’t be till I was home and met with my medical oncologist. I have a hard time remembering everything, and definitely struggle with the timeline of events after surgery but I will never forget when they came in and said... ok you can go home. I was in the hospital longer when I gave birth. What do you mean I can go home? You just had a piece of my skull laying in a metal dish while you fished a golfball out of my brain. I was in complete shock at how quick my stay was but was in no way what so ever mad about it. I was out the door within 3 hours of permission to leave!  I left with a calendar full of doctors appointments, a list of unanswered questions and a handful of prescriptions to fill. I was exhausted but hadn’t seen Raylan in days and could not wait to get my arms around him. He sat in my lap and rub my cheek with his sweet little hand and said “mommy, you all better? The doctor get the monster out your head?” And in that moment it was everything I needed to know whatever came next, I’d face with a vengeance. I’m not going to let this illness overcome me because I have too much to live for. 
Recovery from surgery hasn’t been as bad as I thought it would be. And honestly, my bilateral mastectomy recovery was much harder. My pain level has decreased enough where I hardly even take Tylenol anymore. The worst part is the noises my head makes now. Imagine if someone was squeezing a sponge inside your head, the feeling, the texture the noise the fluid... oh it’s so gross. But! I am up and doing things on my own, even when I maybe shouldn’t. I am known to push myself too hard so I have close eyes on me all the time with a lot of help. My family and friends have really carried me through this and I’m so thankful to everyone.  I just need to be better at accepting the help this time around. I’m not too proud to own up to my faults. I’m struggling with some normal day to day tasks and lots of fatigue. This post has taken me over a week to finish writing, certain noises give me anxiety attacks, and I can’t focus on a television show for more than 10 minutes at a time. Sleeping isn’t happening, hot flashes and steroid hunger have set in (Raylan says I’m “squishy” because I’m so swollen) and did I mention I can’t get a glass of water to my mouth without spilling it because I’m shaking so bad? Steroids are no joke. The medications I’m currently taking are probably having a bigger effect on me than the actual surgery, and if you just look at me as an outsider who doesn’t know my story, you’d never know I just had surgery on my head.  The incision is immaculate. The surgeons assistant really advocated for me in the OR by asking to take the time to do the best cosmetic approach. Her words were “I told them you just got out of the Will Ferrell Chemo growth stage and we had to save what we could”. Fully expecting to come out of surgery with a half shaved head and staples, I am astonished at the work they did.  
 
Incision, two weeks post op.  Ignore the baby shampoo dandruff. Not being allowed to use hair products or normal shampoo has not been my friend. 
 So there it is. A long, over-explained update on how the events of the scariest day of my life occurred.  Are you exhausted? Because I am. It was a lot. And it all happened so fast that even typing this I’m in shock of the events that occurred.  But I’m here. I’m alive. I’m healing. I’m fighting. So don’t give up on me yet. I’ve got a lot more story to tell. 🙏🏻💕