I know a lot of people consider the "C" word a horrible word, but cancer to me has been a horrible "C" word - far worse than any other you might be thinking of. Chemotherapy is also a "C" word I am not that fond of. Way back in June when I had no clue what the path ahead was holding for me I had no gauge of what treatment felt like or what I would be going through. There is so much in the news and media slamming this treatment and honestly until you are sitting on the other side of a diagnosis you have no say in how you feel about the topic - that's my opinion anyways. All I knew was that I had two kids that I wanted to see grow up and had an oncologist that I literally trusted with my life. Now in saying all of that, this was not something that I was looking forward to for even a second. The morning I woke up for my first treatment, I felt the struggle between mind and body pushing myself to get into the car and go. There are so many different types of chemotherapy and everyone handles it so differently that a side effect list is really ineffective because it could be all, it could be none or somewhere in between. I had a very aggressive treatment and I felt like I could have added to the side effect list. Apparently when you cut me open and put me back together I bounce back pretty good, this is not true with chemo. It did a number on me and I didn't function very well at all. As I got hooked up for my first treatment and was handed some pills that were to help with nausea, I noticed other patients talking and laughing with the person that brought them. There was a lady beside me that was on her last treatment that had her family there talking about the lunch they were all going out to to celebrate. My mind relaxed a little and as I looked at Becca, my mom and my sister and felt like we would have a nice visit over the next four hours. About 20 minutes after the nurse left I started to feel sweaty and nauseous. It's all in my head I thought, look at everyone else sitting up perfectly fine, I am just nervous and I just have to not focus on it. Becca looked at me kinda funny as I was trying to follow along in the conversation, "Are you ok?" she asked. No, no I wasn't. "I think I'm going to be sick," people move pretty fast when you tell them you are going to throw up. I ended up not throwing up, but the nurse came back over and checked me out giving me that little football pill as they call it to calm down the nausea. Usually people don't feel overly sick on this kind, she said. Well, what I have learned is with this mop of red hair on my head, is that I am not usual. I have been called complicated as they avoid using the word difficult by most of my doctors. Each treatment was the same while I was at the hospital getting my treatment and the days after had their own challenges. Vaporizing my cannabis and using the oil helped for treatments two and three but the week after treatment was still hard. The week following my first treatment I had a friend stop by to see how I was doing - he was talking to me and my brain was so foggy I didn't know what he was saying. Becca came out to stay with me one weekend and I felt horrible because I was in bed most of the day. I went out to lay on the couch to be involved in what her and my daughter were talking about. I have a clear memory of her talking to me and I couldn't make out what she was saying. I could hear her voice but it was just sounds to me, no words. I don't know if I was just that tired or if the chemo brain fog was that bad. I just went back to bed to try and sleep it off. Another bizarre thing that would happen when I was at treatment was, I would slur my words and I couldn't make sentences. It was like I was drunk and knew what I was trying to say but my mouth was not having it. As I look back over what I can remember, I am anxious to be starting again in a little over a week and fretting over what I am going to feel like this time. The treatment I will be getting is different, less aggressive and one less medication but all the fears are still there. As my last scan shows there is no cancer that they can see, these treatments are to deal with what they might not be able to see. There are some people that opt out but I feel like I have done everything I can do to get rid of this stupid fucking cancer up to this point why would I not do what I can to make sure it is gone! I have talked it over with my support team and the plan is to take one treatment at a time and assess after each one making sure the pros out weigh the cons. I think because I went into it not knowing what to expect the first time, it was actually easier than going into this now knowing. My hair has started to grow back, I am starting to feel good again and I, for whatever reason, feel like in some way it's a backwards step. I have been "strong", whatever that really means, for so many months that I am second guessing myself that I can be strong again throughout this. I can see the light at the end of the tunnel and hope that bell I get to ring is at the end of this step. I have warned everyone including the nurses at the cancer centre that I might not be ringing it as much as pulling it off the wall. If not, Melinda bought me the perfect gift for Christmas - a poop emoji pinata that I will be beating the shit out of at my Fuck Cancer party!!! Each step of this journey has been a mind trip and this one isn't any different. I always find that the limbo weeks leading up to the next step is the hardest - instead of being able to deal with something, I am left to my own devices and given time to think. I am a over thinker so that usually doesn't help when I have down time. I know when this next steps starts, I will deal with what is handed to me and again have the support every step of the way.
June 20th was the first day I started my journey back to health, I felt like I was thrown into the bottom of a very large pit and I just had to start climbing. No instructions, just climb and hope to hell I can make it out. I know in a lot of my other posts I have mentioned the "plan" that my doctors put together for me, the treatment I have had, procedures that they have done and four surgeries. Between each one of them has been limited time to heal, but yet I had to and quickly. I made it my job to stay as healthy as possible and be in my best condition going into every step. Before my first chemotherapy treatment I had visions of resting, exercising and eating well, everything I had been doing and have known my entire life to be "healthy". That all went out the fucking window as I was scarfing down a burger and fries on June 21st on my way home from the hospital after being sick all night and going in for hydration. I was so hungry and I just didn't give a shit. I had set this high standard that was clearly not realistic. Even though I have rested, exercised and eaten healthy, it has been so much more than I ever expected. The ups and downs have been a roller coaster for my mind, body and soul.
Each part has been so different and I have had to learn to deal with something new at every turn. Keeping in a good head space is a constant battle as well because of the pain, sleep deprivation and being hungry when I couldn't eat. As wonderful as my doctors are, their "plan" has not been easy on me and my body has been put through the ringer over and over again. I am writing this one week after my right lung resection and ileostomy reversal where I reflect over how many times I have been in the state I am in right now.
Usually coming out of surgery I am flying high, I feel great, relieved and very tired. Megan and Melinda have both watched me put on a little post op show where I don't exactly remember what I said to them but I know I made them laugh. The first night I usually sleep very well, even this last time when I spent the night in recovery due to lack of beds. The lights were on, it was very loud and the only thing that separated me from the rest of the room was a curtain that I am not sure was even closed. I was just so exhausted it didn't matter. The second and third day for me is a little rough, usually this is when the pain starts creeping in and with the other 3 surgeries I was given some type of pain medication which made me sick too. That is why this last time I opted out of everything but the freezing medication in the epidural which didn't really work anyways. Day two is also when I started planning my hospital escape - I just hate being in there. I mean I appreciate beyond words what they have done for me, but the beeping, noises and uncomfortable bed drive me insane. This is where my lack of patience kicks in. Every other night for me in the hospital is a night I don't sleep, I squirm around, constantly adjust the bed up and down while heavy signing so anyone in the room with me clearly understands how annoyed I am. I have convinced myself that being aggravated and annoyed is not a state I should be in to heal so home would be a better place for me to be.
The day I get home is amazing, as soon as the car pulls onto my road and into my driveway I am happy! I come in the door and I have a complete sense of calm, this is when the real healing can begin. The food in my fridge and cupboards are real, they have flavor, I know where it has come from, my bed is so comfortable, soft and warm, I am so excited to crawl in pull up the covers and be in my own little world. Who ever has brought me home and is staying with me putters around the house doing who knows what and I don't even care. All my girls have stayed with me enough they know where everything is and usually have everything organised better than I do. Then there is my tub, my wonderful large soaker tub in my en-suite bathroom, or as I like to refer to it, my little piece of heaven. I actually fantasize about it when I am in the hospital. There is no better feeling than soaking in the hot water and having my body just totally relax and let go of everything that just happened to me. I usually sleep really well the first night home after my bath and in my comfy bed.
Day five to seven however are always a struggle, reality starts to hit about what just happened to me. I start to assess my body, the bruises from my IV's, marks and scratches on me from surgery, and I just start wondering what the hell did they do to me. There are haunting feelings in the back of my mind somewhere because I am sure my body and mind know what happened while I was under but I can't remember. I feel like my mind is scrabbling to make sense of the fact that I am still alive and how being cut open and pieces of me being taken out didn't kill me. Which is truly unbelievable to me every time I think about it. I can also feel my mind scrabbling to send messages to parts that aren't there anymore and trying to figure out how to work again in the "new" way they have put me back together. Healing also takes a lot of energy so I am foggy, the way that I have come to describe it is that my personality is gone. I am void, blank, lackluster, vacant, and I just really don't care. That is so unlike me, I am usually laughing, talkative, opinionated and social. I am in my house coat or sweats for days, my newly grown hair is sticking straight up, I have no make up on and I am on the couch with the TV on or playing on my phone. I don't want to see anyone, talk to anyone and want to shut out the world.
The first surgery, my liver resection, this really bothered me. I had never felt as weak as I did in those couple of days and even though it was only days it felt like forever when I was in it. Tamara came over to check on me and I pushed myself to go to the kitchen to have tea and get out of my bed. I am not an overly emotional person but I feel like Tamara has a "spidey sense" of when I need her and just shows up at the right time. She asked me how I was, just a general question, but we both knew she meant it's time to let it out. I had been trying to be strong and deal with all of these new feelings and the experience of the first surgery. I paused to try and calmly explain what I was feeling but what came out was an over abundance of pent up emotion that I don't even think I knew was there. "I don't think I can do this" I cried, tears running down my face, "this is too much". I just kept blurting out simple sentences through my tears, putting my head down on the counter top of my kitchen island because I didn't have the energy to hold it up no matter how hard I tried. After my chemo, radiation and surgery number one I felt like three more and more treatments was something I would never get through. I broke in that moment, I was back in the bottom of the pit with the sinking feeling that I'm not getting out of this. She rubbed my back as tears rolled down here face and she listen to me whisper over and over "I just can't". Tamara then positioned herself across from me and held my hand shifting my arm that was under my forehead enough that I had to raise my head and look up at her. She looked at me like we were the only two people in the world, no kids, family or friends were a part of this moment just her and I. Her words were very simple and to the point, not pushy or overwhelming, "yes you can" she calmly stated, "you can do this, you have to". She squeezed my hand and then hugged me and I just let go. As my tears started to slow down I felt a smile come on my face, here is my dear dear friend who loves me, I have my best friends, my parents, my kids, my community who love me and she gave that back to me in that moment. I posted the following post on Facebook that night:
"I have always been the type of girl that can stand on my own two feet, problem solve for solutions and make my own path when I've needed to. Strength as a woman is very important to me. There are so many takes on what being a strong women means and my personal opinions of my own life has meant different things at different times. Weakness I knew was something I didn't like. To be weak in my mind brought thoughts of helplessness, disappointment and made me feel like I wasn't being true to myself. As I have gone through this cancer fight I have kept that thought in my head, be strong, fight hard, don't give up! And to be honest it wears on you because you lose sight of what that strength is. As my energy has gone down and I am recovering from surgery where walking the length of my driveway today was a giant feat, all the lines blur as to what weakness and strength are and they can be one and the same. I have struggled with watching my friends and family do everyday tasks for me because I can't get out of bed. Holding me up after surgery so I could take simple steps side to side. Watching my body change to a frail weak frame. It's in these times where I question myself and get down on myself, that I have lost my strength, that I have become a weak person and where do I go from here. Until tonight laying in bed and contemplating how to be strong I just let go. I let go and became weak, I allowed myself to be frail, let the tears out, not expect so much of myself in a time where there isn't a lot to give. And that's where it was, my strength. It was under all my worry of being weak. I can be weak. It's ok, I can let go of everything and have a moment with my weakness where I can be sad, scared, tired and know I can't do what I was able to do 4 months ago and it's ok. I have wonderful people in my life to be strong for me in moments where I can't. I have the love and prayers of my community asking for strength for me when I need it to be there and now I know I have those moments where I can give up my strength for the weakness I have never let in before. In time I know everyday tasks will become mine again and I will be back to myself when I look in the mirror but today I am weak and that's ok."
Ever since that moment I just give in to the feelings, I let it out if I need to, I allow myself the downtime and I don't beat myself up over the fact that some days I am just "Not Feeling It" (in a chicken accent). These moments are also where the healing is. Incisions heal together within a couple days, muscles in a couple weeks, bruises fade away but my mind and soul usually take closer to a month to be put back together, everyday getting better and better until one day I wake up and I am completely me again. I can't believe that my last surgery is done and the day I wake up this time feeling like me I can just stay that way, I can carry all I have learned to hopefully be a better me but me all the same. At the start of this journey the word heal meant nothing to what it means to me today. There is so much more to it and allowing myself to heal in all ways makes me feel like a more well rounded person. Mind, body and soul are all connected if not one and if I exclude one of them none of them heal the way they should. I have tried to find balance since my rock bottom moment and have honestly felt better because of it. The scars on my body are not the only scars I will have through out the rest of my life but scars will fade with time and even make me stronger.