Saturday, August 23, 2014

...and into the light

The ocean has a funny way of stirring things up. Once the water hits my toes everything outside of myself vanishes. Which means everything inside of me surfaces. Usually my insides are a reflection of what is around me. It's hard to be anything but sunny when it is always sunny. I have always appreciated the sense of freedom this allows. Today my swims brought me to replay a few recent conversations I've had. Multiple times I have been asked about my new job, why I would leave teaching, and why there is even a company built around post-medical treatment. Teaching HAS proven to be difficult to leave already. Thankfully my life is full of families with children who are happy to dance with me, let me paint their faces, and operate at the lightening speed that I often function at. The magic of childhood has yet to be far from my life, thankfully. So why be a part of the "after treatment" care? It's funny how this is a no brainer to me but a head scratcher to most I talk to. I can only speak from my own experiences and it's from these that I see how delicate life is after the plan your doctor created for you ends. I often question whether or not how genuine of an experience I shared with you all was. I believe that I shared the experience the way I needed to share it- a look through positive lenses. I noticed how my positivity fed your positivity and that cycled back into more positivity for me. We had a thing that kept us going. What wasn't shared were these quiet moments of darkness. It is these moments that fuel my passion for my job. I want to say something about how being on the other side of all of that makes it easy to share these moments, but considering the amount of tears that fell today I'm not sure I am exactly past it yet. Let me start from the beginning...

My first moment of collapsing didn't come with the diagnosis. I remember crying of course, but I think it was more because I felt overwhelmed and I was concerned about what I was putting everyone else through. I remember it hurting to see my father break down in the front seat as I called my aunt to tell her. I remember being too afraid to bring this news to 3 women who are such strong
influences in my life,  Erin, Tamara, or Celeste, and only having the courage to tell their husbands to relay the message. I remember feeling like I was being suffocated with information when my breast surgeon called me to set up my first week of appointments. But none of this was too much. The first time I felt too much came about a week or so after diagnosis when my treatment plan had been created. I had just bonded with my doctors, I knew my chemo schedule, I turned down the option of freezing my eggs, and I was about to start my walk as a full fledged cancer patient. I assigned tasks to people to help me get through what was in front of me. I felt like I had a sense of control over everything to come or at least a grasp on it. And then a rug was pulled out under  me. I experienced my first encounter with resistance from someone who I considered a huge force on my team. They exposed negative feelings surrounding my medical team and in doing so it allowed for the realization of the fact that there was an option other than survival to pop into my head. Even an inkling of a lack of support made everything spin. I went from feeling in control to grasping at nothing. I remember how strongly this feeling was. I was at work when it all happened and I had what I know was a full on panic attack. Thankfully I had my best friend at work and witness the chaos unfold and immediately lifted it off my shoulders by taking my phone and the situation. When I think about this moment I wonder why I would ever let one person create such a sudden, strong tornado in my life. I know that this was proof that a) I was in a state of shock from diagnosis still and had no idea what I was starting and b) how much of a control freak I felt like I needed to be//comfort came from control. From this small moment I felt my world start to collapse. Kayla of a few years ago would have let this take over. Kayla 2.0 that had started formation post college and fully blossomed with cancer put on her big girl pants and regained control through confronting the situation. A small, few hour blip sure. But it was the first peek I had at feeling utterly out of control of myself and my life. And for me, this feeling can cause mental and emotional collapse. But that wasn't the worst of it.
(Side note: a lot of people ask me for advice on how to help a patient going through treatment or what to do if you think a patient isn't doing what they should be. Easy answer. You show support. Nothing else. If a patient thinks they need chemo then they need chemo. If a patient thinks berries will cure them then you go pick berries. Unity is crucial to success (success can mean different things). Resistance makes things deteriorate.)

Then mid summer I started having these breakdowns. I would lie in bed and cry and cry and cry and cry. I would look at my parents and cry. I would be with a group of friends and pretend to go to the bathroom so I could sit alone somewhere and cry. I would experience these moments where I wouldn't feel brave enough to be around a group for whatever reason and have to leave and sob my friggen face off. I remember being at a Fourth of July party and having to leave. I rode my bike home and was crying in a way that I had never experienced before, it used all of me. I tried calling a friend, my parents, I ended up just crying for hours until I fell asleep. I had these moments where I so strongly felt so weak and it was out of my control. I remember telling Paul how I didn't want to live through another minute of any of this and how I wished everyone would just let me give up. I'd go on bike rides with my parents and burst into tears out of nowhere and they would try to talk to me but there was no stopping my emotions and no reasoning with them. I saw the toll this took on my parents, I remember my mom crying trying to explain it to my doctors. I could never verbalize or pinpoint a reason. I had no idea. All I knew was how terrible and consuming it was. My doctors explained how chemo screws with your hormones and how everything in my body was so out of wack. I felt like a crazy person but they weren't surprised. They were sympathetic for sure. I remember tears in their eyes listening to my mother explain my emotions. But they were confident that this was fixable. So for the first time in my life I understood what true depression was. I'm thankful for this experience because I can understand now that it's not being whiney. It's not something you just need to get over. It's consuming and crippling and a force that is all encompassing. And the only thing that helped me was medication. So my doctors eased me into a Cymbalta routine. Normally I would have sought out alternative solutions but this was such a powerful darkness we were so desperate to get rid of I agreed. And I'm so happy I was open to have new chemicals balance out my imbalanced chemicals because that's just what they did. I remember some days later feeling like it was a day I normally would have just stayed in bed and cried but instead I had an overwhelming urge to shop. That's when I realized the meds had started working and it made things almost "manageable".  But that wasn't the worst of it.

And then at the end of summer I lost two of my best friends. One a romantic relationship the other not. The friendship was one that I had lost the energy it required and I couldn't handle when it would drain me. It was the best friendship I ever had and the worst. It's the only friendship I ever had with so many ups and downs but it was always worth it. Last summer though I physically couldn't be a part of it anymore, as the downs (in any relationship I was a part of) drained me and draining me meant my counts lowering and my body weakening. So I had to walk away to stay alive. And in the same night I lost my other best friend who I had been dating for a long time. A relationship that had always been grounded on friendship first proved to be unable to handle the toll cancer took on it. It started falling apart once I showed signs of sickness and as much as I tried to pour energy into making it all ok, I couldn't. And when that fell apart so did I. The heartbreak would have been hard if I was healthy but it felt even worse to know that I'd have to face this challenge without him. My health took a huge dive. If it wasn't for how many people were willing to do whatever it took, from flying me across the country to sleeping next to me every night so I literally could never feel alone, I think this would have been a dunzo point in my fight. But again, that wasn't the worst of it.

Eventually I grew to be thankful for the outcome of those relationships because I could use the energy I had been spending on making them work now to stay alive. I started teaching with the new school year and worked through treatment. I went from wanting to stop receiving chemo to turning it into a themed party every week. Work was draining the crap out of me and I spent a lot of time sleeping in the library, having other teachers covering for me. Showing up every day was not in the best interest of my health but I'm stubborn and when I commit to things I have to see them through. So I kept going and did as much as I could. And finally one day it was my last chemo and there was a huge parade and party for it and everything was supposed to get better now that I was done. That's when I had my biggest fall. After my last treatment I don't remember being able to get out of bed for at least a week. I cried a lot. I wouldn't let anyone visit. I had my precious Honey come and lie next to me in bed once because I needed to feel a mother's love and I couldn't get ahold of my mom that day but otherwise I completely isolated myself. I tried to reach out to one person in particular for help and didn't get the response I wanted so I shut down and shut in. That went on for 3 weeks. No work, no friends.. some Netflix. It wasn't until I decided to go spend a week down in Florida that I did anything other than sleep and cry for days. But that still wasn't the worst of it.

Feeling like I was losing my femininity with the double mastectomy wasn't the worst of it. Recovering from that awful surgery wasn't the worst of it. Going through months of drama to find a hospital to treat a high risk patient like I was for radiation wasn't the worst of it. Having to spend 5 days a week for 7 weeks at a hospital during radiation while my skin was burnt into a goo wasn't the worst of it either. Or when I had legit nam-style flashbacks of being so unbelievably sick when I walked pass Kellogg or drove by my old apartment this summer. No, the worst of it all came when treatment ended. When everything could go back to normal and I could resume life as a regular 20-something again, that is when I fell apart.

My social worker warned me that people have a hard time transitioning when treatment ended and boy was she right. You spend so long with such a clear plan and purpose and suddenly you are off on your own to flounder. You spend every day with the same doctors and nurses and support staff and suddenly you never see them. You get texts and visitors and people making you dinner and suddenly you have to be independent again and it feels lonely. You went through something totally life altering and with one night's sleep you have to wake up like it never happened. My first day back at work was terrifying. I sat in my car and cried for two hours before I had the courage to go in, even though Baker Demonstration School is the most safe and loving place in the world. There were about six weeks of the school year left and I spent the first four of those terrified, exhausted, and crying daily. My parents and friends and everyone else couldn't understand why life was suddenly so hard for me. I had to stop sharing how depressed I felt all of the time because of how frustrating it was to everyone else. As it should have been! I remember telling my friend how crazy I felt and how every day that I woke up to another tomorrow was painful for me. "You fought so hard for so long, Kayla, you can't give up now that it's over." I wasn't even upset or in a hurry to have the lumps I found a year after my initial diagnosis looked at. I was too unhappy to be phased by another health "scare". I wasn't bothered when test results on my ovaries came back flagged and needed further investigating. And I wasn't even that happy when all of these things were taken care of. I was in this mindset that cancer was my present and was going to be a part of my future too. Now I don't want to make it sound like every day was terrible. I had many moments of true happiness and love and joy. But there was a certain darkness lingering. Even when I was in Central America, one of the most beautiful places on Earth, I carried something on my shoulders.

It wasn't until I pulled up in Orange County again that whatever it was I was carrying around slipped away. Only the tiniest bit of it remains.
For example tonight I was going through pictures on my aunt's computer are found one from two Christmases ago. I saw my hair in it and almost immediately burst into tears. It was so long and beautiful. I'm not afraid to say how good I think I look in this picture either. And suddenly I was just longing for my hair and all of that again. Looking at it feels like I'm looking at someone who died in a car crash or something, like it's a memorial photo. Maybe that's a metaphor for this rebirth, the person who I used to be and the one I am growing into.
I haven't experienced any negative emotions related to the past year for weeks though. I give some credit to being in a great place mentally and emotionally. And to my good health. Mostly I want to honor this purpose and passion I found for life again. Maybe it came from my new job, maybe it came from my new house, maybe it came from within. The source matters very little. What's important is the hunger I have for every new day. Like I said in my last post, it has been a long time since I felt that way.

I started connecting with hospitals out here, mainly at Hoag in Newport Beach. I have been spending time at the cancer center and connecting with various support groups and survivorship programs to become a familiar face at the center. I was in a yoga class on Thursday and was the youngest by about 30-40 years. There was some teasing about being such a baby but it was all in good fun and everyone was very welcoming. There is an unexplainable feeling of love and connection I get when I am surrounded by other survivors. Two of the women cornered me after class. They introduced themselves again and told me they were survivors of 15 and 18 years. "We just wanted you to know that we are growing old the same boring way everyone else does and the way you will too." I was completely caught off guard and once again in a puddle of tears (after this entry I'm wondering if I WAY more than the average person... curse you hormones!). These tears were happy. My heart was felt alive in a new way and full with hope. For the first time since I was diagnosed I am seeing, really seeing, a long, healthy future for myself and a desire to do all that I can to have one. I believe in one. I don't what this post to be depressing to read. I'm nervous to post it. Sharing low points makes me feel vulnerable and it's not how I want people to see me. But it is honest. I want to be honest for a peek into life after trauma. How it doesn't just vanish and how people in these transitional times need attention and assistance too. So answer the many "why?" questions, that is why I had to make a career change. What good is my story if I can't share it? This isn't a job that school could prepared me for or needs skills I could have learned in a classroom. I have the opportunity to use life experience. I know firsthand the chaos cancer can cause and how the mess doesn't disappear overnight. I found hope. I have to share it. I have to do what I can to help others find it too. Hope is a powerful force. Hope is powerful fuel. It's what pulled me out of the darkness... and into the light.


1 comment:

  1. I am so proud to be working with you. Thank you for being genuine and open, even when that takes being vulnerable (which is so hard). Also, the t-rex is amazing.