06.18.20

here we go... AGAIN

Right after that appointment with Dr. Lee on May 27, 2020, I was put into thoracic outlet syndrome-focused PT by June 3, 2020. My therapist was named Vicki and once again I struck gold with an amazing and caring PT. She took the time to listen to my wacko injury story and the surgeries, numerous hours of PT, and pain that followed. She had also spoken directly to my surgeon about how to best strengthen my thoracic area before going under the knife. From that conversation, and the one we had, she offered an abundance of home PT exercise, but most importantly, she understood that overworking my neck, shoulder, and arm, always led to excruciating nerve-burning tingles and muscle spasms. This was my unfortunate cycle of PT in previous years. So, rather than focusing on resistance training, she identified my trigger points for both nerve and muscle pain. From there, she decided that stretching and massaging over tight muscles is also working it, but in a gentler way. She became another person who ensured me that yes, it was a good decision to have another invasive surgery.

I love my mom and dad do not get me wrong, but I think seeing their daughter go through surgeries and still be in pain, made them miserable. My dad has always been more cautious when it comes to deciding whether a medical procedure will be worth it in the long run. For example, "you had three surgeries already. they didn't work. why risk having another one?" You see, my dad had a microdiscectomy the year before. The surgery was quite painful for him and unfortunately not a long-term smashing success. He himself had now been dealing with right-sided sciatic chronic back pain for a year and taking gabapentin. I really thought that he would understand my need to "fix my pain" since he too was dealing with it. However, this wasn't the case. At the time it was very hard for me to understand why we could never speak openly about how pain affected each of us separately, but also our evolving relationship as Dad and daughter. You see, my Dad and I always always always had one thing that kept us tightly bonded, sports ( mainly softball duh). He was the person taking me to all my practices, games, and travel tournaments. So, naturally, we spent most of our time together. (Don't worry my Mom was around too but he was the reason I fell in love with sports) When I had to stop playing softball, we lost our connection. I'm in no way blaming my dad let me be clear, but it made me realize that we didn't have much to really talk about anymore. I missed that sense of having a thing with my dad. So, in an odd way when his pain began to show signs of becoming chronic it made me hopeful that one day he would understand how much pain can change you. (disclaimer: there are so many other ways pain can affect someone I am in no way generalizing. It's just that these two stark opposites pertain to this story) For some, it becomes a motivation, something to conquer and push through. For others, it becomes a loud painful reminder of what the pain has taken from them. My dad is a logical yet pretty optimistic person. So he fits into the motivated pain person. His coping mechanism became shoving down any obvious cues of him being in pain in order to still appear as our strong and capable dad. Whereas, I have always been more emotionally reactive, hence my depression and anxiety which followed my injury. I get it. Pride is something that every spoonie struggles with. We either go around gripping it so tight that we build up walls instead of realizing, "hey I need help to get something done" or "I physically can't do this anymore." And both are simply okay. Looking back, my dad and I were both struggling with letting go. I was struggling to give up on the pain-free athletic life I had, therefore chasing down any possible way to fix it. I could not face the possibility of becoming "functionally disabled". While he was struggling with letting go of any shame or guilt for needing help, especially from a loved one. As for my mom, she has tremendous amounts of anxiety when it comes to her kids' well-being. She is a classic Nervous Nellie. For example, "I'm worried about you taking so much medication, what if you get addicted? what if something goes wrong during surgery and we can't be there because of covid restrictions? will you be okay alone? I hate seeing you not getting better" My mom and I are very similar. She and I are emotional people which is great because it makes me feel seen, but it can also have its downsides. Every decision I wanted to make in regards to my chronic pain, I was forced to consider how my mom would take it, rather than focusing on how I was taking the news. It all began to feel overwhelming. I felt like a chaotic burden that my parents were trying to control when in reality, we were all scared because at the end of the day we knew the truth. None of us could control pain. None of us could control the outcome. We could only take a leap of faith, in me, in my decision, and ultimately my surgeon.

My whole family drove me to the hospital on the morning of June 18, 2020. Check-in time was 7:30 AM sharp. The whole way there I tried to act as calm as possible. Even though my sister was only 9 at the time, she was able to read right through me. She reached her little arm out and I hugged it as she patted the top of my head. I remember thinking that my parents probably thought that I was comforting her so that she wouldn't be nervous about my surgery, but really she was comforting me. I knew my parents were nervous and on edge about this surgery, so I wanted to show how confident I was with my surgery plan. But, on the inside, I felt a million butterflies trying to make their way out of my mouth....

It was time. Surgery number four was going to happen. It was my first time being in the hospital for a long period of time by myself. Even though I could call, text, and facetime Cal and my Mom, it felt lonely going through check-in. Luckily, my nurse was amazing and kept an upbeat chatty vibe. She complimented my strength and told me to not be shy and ask her for anything. (she even took the pic for me) This helped keep me feeling comfortable. Once the iv was in, the anesthesiologist came to chat with me. He asked a series of questions, but the two most important questions I knew I needed to elaborate on were about my asthma and smoking medical marijuana. Both of these factors affect the amount of anesthesia that needs to be administered throughout the surgery. I had spoken to him two days prior to surgery as well. He discussed with me how smoking does make anesthesia not as effective. The other thing he pointed out was how close together my other surgeries were. More anesthesia exposure in a short period of time makes it so that finding the correct high dose amount can be tricky. I guess you learn something new every day huh? I do wish I was made aware of this 2 weeks in advance but, that's life!

I remember going into surgery a little too clearly haha. Similar to my last surgery, I was wheeled into the OR wide awake. However, this time I was able to place myself on the operating table, lay down in my own comfortable position, and with that, the nurses began hooking me up with patches. This was new, the Drs even mentioned how funny it was that they needed to ask if it was okay to open the front of my gown to show my ribs, "most patients are zoinked out by now" We giggled and I continued chatting with them as if I wasn't about to go under the knife.... The nurse had on a sick Star Wars surgical cap. SO naturally, we discussed the cinematic art pieces. As they opened up my gown goosebumps and waves of chills radiated throughout my body. "Would you like a heating pad under you and a blanket on top of your legs during surgery?" I aggressively nodded. The anesthesiologist came into the room and said, "Okay, ready for a sticker on your forehead? It changes color as you get sleepy so we know how much medication to administer". "Woahhhhh" were the only words I could get out before he placed a long rectangular shape sticker across my forehead. "Okay, I'm going to go start increasing the type of anesthesia and keep talking me through how you feel. How's your pain right now?" I responded with a, "hmmm I'm at about a 9 right now... could be because I feel nervous too.." "Okay, adding painkillers with anesthesia. Why don't you tell us a bit about how you got hurt? And.... what kind of music would like playing during surgery to help with the nerves?" "Hmm..... something chill, like Khalid!". I then began explaining that I used to play softball and how I never knew about my rib until this year despite years of rotator cuff tendinitis. The last thing I remember was tearing up saying how I hoped this surgery would let me play again... Dr. Lee walked over my head and said "night night" and with that, I drifted off to sleep...

In the past, as you can remember, I never had any issues coming out of surgery. I would either wake up naturally asking for apple juice, toot toot myself awake, or get woken up gently by the nurses. I had never had an experience like this one... I remember feeling the most intense pain I had ever felt in my life, then suddenly, a lack of air getting drawn into my lungs.... I couldn't pull any deep breaths, only patterns of shallow hyperventilated breathing... yep, a panic attack. The nurses rushed to get me an oxygen mask (maybe even laughing gas to calm me the f down) and medication to keep me calm through my iv. I felt the Dilaudid begin to ease my pain and breathing became less of a struggle. I felt wide awake and anxious. No drowsiness from the anesthesia, just physical exhaustion, and pain. I immediately went to touch the drain tube and understood what Kaitlyn meant by the clicking/bubbles popping feeling. It was an odd sensation to have liquid and blood being actively drained out of your lungs..

I periodically face timed my mom, sister, dad, Cal, and various friends for sources of distraction. The doctors would come in every couple of hours and move me around for chest x-rays to check up on my progress. Around 9 pm that night, in the middle of my vampire diaries episode (the audacity) my pain spiked into a whole new threshold. I had tried to sit up on my own to walk to the bathroom and pee hopefully. Yea.... that didn't really work the way I wanted. Forget using what little ab muscles I had.. any movement, any twist would send agonizing stabbing pains on the right side of my thoracic chest wall. Even my neck was in anguish. Even lifting my head up or turning to my left felt impossible. I pushed the red button and my nurse rushed in asking if I was okay. I was in full-blown tears having a panic attack because I felt a tugging almost tearing feeling around my incision. All of my muscles were insanely inflamed and therefore tight. The spasms didn't help make things better either. She gently brought the bed to a "sitting" position. One arm cushioned my neck, and the other supported my lumbar area. She told me "release all tension. don't try to use your muscles to get up let me lift you". I turned into a limp log and added pressure to my right ribs as more support. It felt as if I was being levitated. Then, a sudden rush of dizziness. My nurse and I locked eyes and she presented a baggie ready to catch my vomit... what a homie. Then it came time to try walking. As soon as I felt more steady, the nurse said, "okay now give me a hug". I placed my arms around her sides and once again she lifted me off from my seated position to a light landing on the heels of my feet. Then she said, "Okay, now actual walking will not feel good right now with your lung and rib pain. So I suggest either the penguin waddle or subtle shuffle". She then demonstrated the two as a way to make me giggle. I went for the subtle shuffle.. I wouldn't dare raising my legs and engaging my ab muscles. Now for the other challenge.. landing on the toilet, haha. Once again my amazing nurse instructed me to hug her so that i could literally just plop gently. As you can imagine, these actions in reverse were also not fun. Once I finally ended up on the bed again, she gave me another round of Dilaudid and added some muscle relaxers to the mix to soothe everything, and hopefully get some sleep. It got to the point where it became impossible to find a comfortable position for my neck to watch tv until I fell asleep, but I needed the noise, the distraction. So, I called Cal. He was hanging out with some close friends at his parent's house (distanced outside cuz hello covid) and they all happily talked with me. Then, as the medicine began to kick in and I got sleepy Cal left me on the call so that I would be relaxed with the sounds of familiar voices. Remember, it was at the brink of the covid craziness, so I was all alone in the hospital room. Every time I would close my eyes and start to drift to sleep I would jolt awake from sudden pain and what I now know was medical PTSD from the way I came out of surgery... This went on the whole night. As Cal's friends left his house that night, he left me on speaker phone to listen in on my breathing and be there in my ear with encouraging words that I was strong enough to get through this one miserable night alone, then get to go home to him and my family ASAP the next morning...

I got woken up at 7:45 with a team of doctors coming to check on how I was doing. Once again they took chest X-rays and checked on my medication and vitals levels. Then, the moment I was waiting for. Dr. Lee came into the room and said, "Hey kiddo how we doing this morning? Heard last night was kinda rough." I nodded and said yea I didn't get much sleep. "Well, on a positive note, surgery was a success. I do not see any substantial liquid in your lungs and inflammation levels seem normal for right after surgery. I also have a present for you." He handed me a little cup, like the ones where you pee in for a urine test. I picked up the cup and peered through the bottom, and there lie a piece of my rib. "I saved you a part of what we resected as a souvenir" I was ecstatic. I know, it's a weird thing to be happy about, but it served as a reminder that this surgery was the right decision. The piece he gave me ended up being the very tip that rested on my brachial plexus, the stubborn bastard rib. Then, I was once again brought to a seated position and the team of nurses said, " Okay, ready to get that drain out?" I nodded and prepped myself for a needle of some sort of local anesthetic. They giggled, "Sweetie you need to relax your muscles. No meds are needed. This won't hurt I promise but it will feel uncomfortable. So, as you take as deep a breathe as you can I will pull as you release" I looked at her like a deer in headlights and slowly began to unclench my hands and neck muscles. Inhala.... exhala.

The best way to describe the way this felt was like a snake or a long worm being yanked out from a teeny tiny hole under my new scar. yuck I still get the heebie-jeebies thinking about it...

I finally got to relax watch the vampire diaries and eat my breakfast. I was actually starving. I ate my whole waffle, two pieces of bacon, and a jello cup. After shoving down all the food I was ready to try to do my last subtle shuffle to the bathroom. I still needed one more chest x-ray before I was allowed to leave. By 9:30 I was getting prepped for discharge. I was given my last dose of Dilaudid before leaving so that the car ride home would not be super painful. I called my mom and let her know to please bring ice packs, pillows, and a blanket for the car. I know I know I said ice packs... weird huh? But, Kaitlin had told me that ice was going to feel amazing on my back post-surgery, and believe it or not with how much inflammation and soreness I felt I wanted the ice. Not directly on my scar or the front of my chest... that was way too sensitive to everything. Plus, I had to keep it as dry as possible for the next 48 hours.

My mom arrived around 10:30AM.

She gave me a big hug as she said, "Let's get you home hun, Cal is waiting in the car for us" She pulled out some comfy shorts and a tank top. Hallelujah athleisure to the rescue! But, hell I kept those hospital socks cuz I knew I would need them for my subtle shuffle. Getting dressed was exhausting. I could barely lift my arms without insinuating excruciating pain from my incision site and back. I had to be held up by nurses in order to stay seated without any support from the bed. I couldn't hold myself up. Forget feeling shy or insecure around doctors or nurses, I let two nurses and my mom undress and then dress me. I thought to myself, "how the hell am I going to do this at home? how the hell am I going to walk to the car?" There was a gentle knock on the door. Another nurse came in with a wheelchair asking" who's ready for their hot new ride", phew, thank goodness. We wheeled our way out of the hospital and I quickly learned that every little bump was felt deep in my core. Like not just my whole moved but my spine and ribs itself were getting bruised. The car ride was not going to be fun. Cal pulled the car to the front of the hospital, jumped out of the car, and immediately gave me a big hug. I started to tear up and just held onto him. He carried me into the car as gently as possible. The passenger seat was lined with pillows and ice packs ready for me to rest my back on. Then, with a big smile, my mom said, "Here's sergio the surgery pillow". Finally! This little pillow, man, I don't know what it is about it, but it is magical. I found it at Marshalls with my mom the day before my wrist surgery (surgery #1). I remember immediately gravitating towards it because of the size and yes it is indeed very soft. It gave the perfect amount of pressure on y stomach while keeping my arm very supported. Oh yea, how's my arm you ask? Well, it felt like crap but in no way comparable to the pain felt in my rib and the right side of my back pain. I had orange sausage fingers once again. But, I was hoping that as the inflammation in my shoulder and incision site went down, so would the nerve pain. As we drove to my parents' house my mom drove very slowly. Slow enough for me to spot a Jamba Juice and know that I NEEDED something sweet. This was another one of my surgeries traditions (lol sad). Jamba is a must.

We parked in the driveway and my nerves shot up. Now for the fun part, getting out of the car and into a comfortable position. Cal once again carried me out of the car. Did I forget to mention that it was blazing hot that summer? Like abnormally so for the Bay Area. And as much as I love my parents' house, it could turn into a sauna stupid fast. As we entered the house you could feel the heat, it felt suffocating rather than clean like the hospital. Sweating was going to be an issue for the first two days...I had to keep the area as dry as possible for the stitches to heal. As soon as Cal put me down on the couch a pure surge of pain. For the first time ever, I knew what it felt like to be in so much pain and yell in anguish. My mom hurried over and began stroking my hair going "shhhhh shh". While laying there on the couch Cal ran over to the freezer, said "ready" and with a nod I placed my arms around him like a hug and he lifted my neck and back gradually as my mom quickly placed ice packs under me. As Cal laid me down another yell... the pain felt unbearable. Every time I was sitting up my chest, arm, neck, and surgery site felt too weak to hold themselves up. However, every time I was put on my back, the initial impact on the back side directly opposite from my scar felt as though something kept stabbing me. Not to mention, that my arm would get more inflamed and my neck would spasm. Nothing felt right and everything felt oh so wrong. My mom tried to reposition me but couldn't bear weight on her weak wrists (gee I wonder if something runs in the family). She wanted to be able to move me around and help as much as possible, but she was only making my pain worse. I physically was unable to use any sort of muscle left on the right side of my neck. See, during surgery, they had to snip snip past those neck muscles that help you extend your neck, rotate your neck, and oh yeah pull breaths from your chest muscles down to your diaphragm muscles and help you breathe easy. All this led to inevitably being sensitive and weak post-surgery. So imagine how much strength it would take for my mom to lift a limp and fragile body. Not gonna happen... and my dad has a bad back... so that left Cal.

Physical therapy would start back up on June 26, 2020, but for now, the only PT I was told to do was the breathing torture device. What is that you ask? Well, the technical term for it is a spirometer. I had to use it at least once every hour to exercise my lungs. Doing this made my pain worse... It hurt to feel my ribs expand as I tried to take a deep breath. I popped the oxy prescribed and hoped it would help. As I started to calm down and get my breathing under some control I realized something... my 9-year-old sister hadn't been seen. In a raspy gaspy voice, I asked, "Where's Peanut?" I hear little footsteps coming down the hallway. My poor little sister came running over with red puffy eyes and gave me a gentle hug and a kiss. She held my hand and said, "are you, okay sissy? I've never heard you cry like that..." She wiped a tear that was falling down my cheek (cuz she could tell I couldn't raise my arms) and I said, "I'm in a lot of pain. It scared me too but I'll be okay soon. Wanna watch a movie with me?" This is what my days consisted of, lots of meds, lots of movies, and lots of TV.

As nighttime came, I feared not being able to sleep in comfort. My traditional Latino parents actually let Cal sleepover. Not in the same room, but still this was a HUGE step for my Dad. Cal slept in the living room on a cot and I slept on the couch so that they could both get up and help me. So, if I woke up in need of ice, water, my meds, a snack, a trash can, to get up and pee, literally everything and anything I would call them. Literally, just call one or the other until they woke up. Whoever woke up to the phone ringing would wake the other. However, the problem that none of us expected was panic attacks in my sleep. I was knocked out without any problems the first night, due to exhaustion from being in the hospital and then moving back home. But, the second night? Well, I remember taking a high dose of my pain meds, gabapentin (yep I was put back on it to help recover after surgery), and a muscle relaxant before heading off to bed. I also remember that I didn't have a lot to eat since my pain was too high and therefore my appetite was nonexistent. Luckily, my mom bought me the essentials; Gatorade, saltines, fruit, and Costco muffins. All things she knew I would never turn down when I felt like crap. I fell asleep watching tv in bed. I needed the noise distraction to make me feel like I'm not just suffering in silence. Now, this is where things get blurry. I just remember getting woken up by my Mom and Cal. Then, just realizing how much pain I was in I cried... the meds must have worn off. Apparently, I was crying and yelling/ hyperventilating in my sleep. The twinkle lights in my room were turned on so that Cal could get me in an upright position to try to relax my breathing and have me drink some cold water. Then, he went to the kitchen to swap out my ice pack. Meanwhile, I am still crying well more like yelling wheezes because of the burning nerve and bone ache from my incision site... it felt like someone had hit me with a bat on my upper back. Boom, yet another panic attack. The inflammation in my chest made it even harder to pull breaths in between tears. I couldn't calm down the pain or my crying. My Dad was sleeping and woke up to me crying and then heard Maya also crying.. I had scared the crap out of my poor sister. I heard my dad's footsteps race down the hallway, "Shhhhhh you need to calm down you are scaring your sister out. Not cool." This only made things worse... My mom attempted to sit me up, but her wrists couldn't take my weight. I wanted to get up I needed to get off my back, this just made me stress more. My mom then tried to sit down next to me and hold me. One thing she didn't know is that being held during a panic attack makes me feel trapped and suffocated. I pushed her away. She started to cry and repeatedly said, "You need to calm down. I don't know how to help you. How can I help you when you are like this?" As those words left her mouth, Cal entered the room and took control of the situation.

At the time I had no idea what Cal said to my mom. I just knew that my mom left the room and allowed Cal to help me up and get seated on the couch with a box of saltines and pain pills in hand. I now know just how much Cal was taking care of not only me, but my whole family to get through this surgery recovery. After Cal had placed me on the couch he went to check on my Mom. He found her crying in my room.. He took her by the hand and said "I know how seeing her in pain breaks your heart. I know you want to do anything and everything you can to help her. I have felt this too before, but right now what she needs is me. I was there to take care of her after every surgery after you had to go back to work, remember? I got her. I can move her around without inflicting pain. I know what she needs when her pain is so high and her anxiety peaks. Do not think of yourself as less of a Mom just because you can't help her move around or calm her down. You do so much that I know she loves and appreciates. Jazzy wanted me to tell you to tell Peanut that she was in pain but is okay now. If she wants to see her I'm sure Jazzy would not mind explaining to her what happened. Or, her Dad. She is embarrassed when she doesn't need to worry about that." To this day, my Mom still remembers this night. It was the moment she realized that it was okay that her daughter needed someone else. It's also the moment she felt much gratitude that Cal was willing to sacrifice so much to help the family. You see, Cal had just started his summer internship. Due to covid, everything was remote so he set up his "office" in my room. Throughout the days he would work on his transcription analysis (some fancy genetic research for Loma Linda University) as I napped. Then, when I would wake up, he would close the laptop and resume nurse duties. He would also help keep Maya entertained and happy to try to distract her from seeing me in so much pain.

The first week was spent mostly laying down or sitting cushioned by pillows on the couch. I would have to take breaks from sitting because it became very painful to support my neck. I would look at Cal and say, "I can't hold my head up anymore" and he would run over to get me comfy. Having the lie perfectly and evenly on your back is hard. I couldn't roll to one side or the other. No twisting or over-stretching of any muscle that would pull the tight areas around my surgery incision. So when I was trying to sleep or watch tv while laying down I could only turn my head slightly to the left. Too much and it would pull my scar and cause tremendous amounts of pain. So I would lay a bit diagonal on the couch. With how much I had to be moved throughout the day and night, my parents allowed Cal to sleep with me. That way it would be easier for me to ask for help. My mom was exhausted and needed to be there for my sister. Everyone had a "purpose" or "role". Mine was just to lay around and heal. TV and movies became the only source of distraction. I tended to re-watch many of my favorite shows for comfort, but that was no longer working. I needed real distraction. So, I took advantage of the different streaming sources available and found new shows. This helped for a while but as time went on it became more lonely, and more frustrating. I am inherently a social and active person. I did not want to just lay around all day in pain. I needed a change. Luckily my best friend was in town for the summer. Mika is like the same-age sister I never had. She knew that I wasn't on my phone much because holding my phone up would make my inflammation spike. So, she decided to come to visit and keep me company.

It was now, June 23, 2020 (5 days post-op). I began to grow more and more curious about what my scar looked like under the butterfly strips. A slight rash also began to irritate the incision site. I notified my surgeon and was told to put on anti-itch cream for allergies. Remember the gnarly rash I got during surgery 2? Well, I guess my skin does like medical adhesive glue or bandages, haha. Mika would help me whenever Cal couldn't. I remember one really funny moment. Mika and I were sitting on the couch joking around with my mom and watching a movie. Cal, Maya, and my mom were at the dinner table working remotely. I had been laying down for at least 30 minutes. My back began to ache and I needed to get up, go for a walk, stretch and maybe take some painkillers. All I did was slightly turn and lift my head just enough to peek over the couch cushion. Without any words spoken between me and Cal, he knew what I needed right away. He jumped out of his chair and went searching for the essentials. Mika fumbled around on the couch into a comfier position. Cal then appeared above me with Gatorade, pain pills, and an ice pack in hand. I hadn't even noticed that he had even left his chai. "Ready?" he asked. I nodded. Mika grabs my leg and says, "Wait, I can help. I want to help. Jazz why didn't u tell me u needed to get up?". I looked at both of them surprised and said, "I literally just thought about getting up and then Cal showed up so haha it's okay Mika". In a teasing manner, Mika slapped Cal's arm and gave him the come on dude look on her face. I felt so supported. It was also the moment I realized how synced up Cal and I were during that week. "Haha, sorry Mika I just have an internal clock now for her patterns. I figured she had been laying down for 30 mins and that has been her limit for now."

Having Mika around made me feel more normal. My mood picked up and once again I had hope that I was going to be fine and come out better. I was no longer stuck with my own thoughts, focusing only on the throbbing inflammation and sharp nerve tingles down my arm. Mika also knows how to get me to laugh, and no lie this was an essential diaphragm training program I never knew I needed. Yes, I had to relearn how to normally breathe, but I also had to learn how to inhale, sip, cough, yawn, hiccup, and talk without causing immediate pain around my surgery site. So all the laughing created a new muscle memory. I was a pro on the spirometer now. My chest didn't feel as tight and I was getting better at staying calm when my neck muscles would spasm. Tonight would be the night. I would try smoking for the first time since surgery. I wanted to get off the gabapentin and pain killer high dose regimen, the side effects were making things harder. Gabapentin kept me anxious and the vivid nightmares did not help me sleep. Plus, TMI time, but pushing was something that was very painful. Being bloated or constipated also felt terrible. (even with the stool softeners they gave me after surgery)The pressure from bloating on my right side made my upper thoracic back area pain worsen. So, I would try to start the ween-off process the next week. I grabbed my pen from my purse (my parents and sister went to the grocery store) and walked to the couch with Mika and Cal. Cal reminded me to go slow even though I was used to taking bit hits. I slowly inhaled for as long as I could and exhaled. Success! No coughing and it didn't hurt my lungs or scar. I instantly could feel my anxiety start to leave my body like steam from a hot cup of tea. Finally, a semblance of normalcy.

By June 25, 2020, 7 days post-op. I was able to handle walking around more. I was also able to sit myself down from a standing position. I know that doesn't seem like much but it was a big deal. I didn't need guidance to safely and slowly plop on the couch without engaging my abs. I would set my own pillows up and ever so carefully bend my knees in a "squat" and fall back. And, I could also get up on my own. The inflammation of my right thoracic area was still high, but my left side felt pretty normal. So, I would rely only on my left arm and leg to bring myself from a seated to a standing position. From this tactic, I also realized that I could kind of roll on my left side and push with my left arm to get myself up from laying down. This had to be done very slowly and it didn't always work. Sometimes I couldn't bear twisting or overusing my neck muscles. On June 26, 2020, I was able to go to my first physical therapy appointment since surgery. I was very excited to get out of the house. Cal drove me to PT (since I was still taking painkillers) and anxiously waited in the car. Vicki was very pleased to see me able to move around. I explained to her that my pain had slowly been diminishing but that I was sleep deprived because I could not get more than 4 hours of sleep. We focused on manual massaging and gentle scraping of tight back muscles.

I met with Dr. Lee on July 8, 2020, my official two-week post-op appointment. I had been in contact with him during those two weeks explaining to him how high my inflammation was. He stayed persistent with his response, "mild to high inflammation is normal". He then added, "give it time, the healing process will take up to 2-3 months". I remember telling him very clearly that I understood that, but that compared to the other surgeries my inflammation was only getting worse, not better. He advised me of the following (all which were obvious except one) 1. limit all activities of R arm 2. no resistance training until 5-8 weeks post op 3. no weight bearing over 10lbs until after 8 weeks 4. (and this one stung because it gave me hope) can resume softball in 2-3 months. I then asked a very important question, "How is Kaitlyn healing after her bilateral TOS resection?". "She is progressing very well. She is back to working out, the pain is minimal, no inflammation, and she is starting to train for rowing in PT.

Great.

A note from the Author:

*p.s. jumping ahead a bit in the story, but I can't help but comment on my feelings while writing this blog post. there isn't a day that goes by that I don't think about the panic attacks and sheer trauma I relive whenever I close my eyes and chest/rib pain is high. I wake up from sleep hyperventilating forgetting that I have to pull from my diagram and not my chest/neck muscles. Medical trauma is real. Don't let anyone tell you otherwise." -love jaz

Good Memories from those weeks:

Interested in what all those xrays showed? Little disclaimer for later on in my journey, I was NEVER told about something shown.. can you guess what by looking at these?

Well, if you guess an elevated diaphragm, then you are correct. Another thing I wasn't told about during surgery was the Dr. having to collapse my left lung.

These two things were not huge red flags at the time for the Dr. Just wait till later on...