I Value My Life

 

I knew I wanted to document my experience regarding the last month. At times I sat down to write about it but ultimately felt too overwhelmed to get into the details. To be honest, I am also a bit confused about the following events, since I was quite groggy for quite some time after the surgery. Today I feel moved to sit down and tell the story of my hospital experience and surgery and all the things that have come with it. 

I have had so many kind people reach out wanting to know how I am doing. I am okay. Looking back on the day after I woke up, I can't believe how much progress I have made in three weeks. I went into this surgery knowing the risks and understanding that there would be a chance things might look a bit different for my life or that I might not even have a life anymore. If you had any conversation with me in the weeks or days leading up to the procedure, you know that I was really scared for my life. I am here writing this so we know this story has a happy ending, but I feel it wouldn't make sense to complain about this recovery, since I have such a greater appreciation for my life and so much to be thankful for. Having said that, I will start at the beginning. 

I had to check into the hospital one week prior to my surgery. This photo was taken right before I left. You can see the genuine sadness in my face as I really thought I wasn't going to ever come home again. Loki was just wondering what all the fuss was about. I was on a medication called Doxazosin because I had an Endocrine tumour that was releasing hormones into my body. This hormone release is what has made me so sick over the past few years. Common symptoms of this type of tumour are high blood pressure, heart palpitations, excessive sweating, migraines, and some more not so glamorous things. This Doxazosin helped control the hormone release so that I didn't have such intense symptoms. I started on 2mg and in the hospital, they cranked it up to 36mg. I had to be supervised since the medication causes some potential dangerous side effects as well as IV fluid to slow my heart rate down. I was on a new medication as well that would slow my heart rate down since it was averaging 150 BPM in the hospital. Mind you this is all before the surgery. I'm sure all the other patients on the surgical oncology floor were wondering what I was doing there. I looked healthy and was able to walk around fine. By just looking at me you wouldn't be able to tell what had been going on in my life for the past eight months. 

It was a long week of doing absolutely nothing in the hospital. My mom and dad flew in the day before the surgery. My mom was going to be staying for two weeks to be there for me and to help me with my recovery. 

When they all left that night (Brody took my mom to her hotel and my dad to the airport to go back home) I thought I was never going to see my parents again. I watched him turn the corner out of my room and really thought that was it. Although I believe in heaven and know that if I did die I would see them, I kept thinking about how their lives would be changed after losing a child. How would they go on? Would they stay in touch with Brody? How would it affect my siblings having to experience such immense grief at such a young age? I looked at my hospital bag with my clothes all over the floor and pictured my mom and Brody having to take it home after I had died and thinking about what a horrific experience that would be. I was overcome with grief, fear and despair for not the first time but the last time before I went under the knife. 

The next morning when they wheeled me away and I kissed Brody goodbye, I had a calm wash over me. This is something my dad predicted happening the night before. I was ready to go, they were going to operate whether I die or not, and it was go time. If you've ever been in an OR you know it's kind of hectic. There are so many people, voices, it's freezing, it's somewhat rushed. I saw my name on the screen "Rebecca Leavitt. Removal of a malignant paraganglioma adjacent to the abdominal aorta, left kidney, and spine. Possible resection of pancreas, diaphragm, spleen, left kidney, intestine." They made me re consent to all of that and then started to put me under a conscious sedation. This is something I requested because needles are not my friend and let's just say it's easier for everyone involved if I am in a happy place when they stick me. So that's where things get a little fuzzy. I remember them sitting me up to get the epidural and then waking up in recovery eight hours later. 

They had told me I would be waking up in the ICU after being on a ventilator for up to a few days. They said I would be intubated and this is something that caused me a lot of anxiety leading up to it. So imagine my surprise when there was no intubation and I was not in the ICU. I remember asking if I could open my eyes and they said yes. Waking up from anesthesia is weird. They told me I wasn't in the ICU, they hadn't had to remove any of the organs they were "fairly certain" they would have to, they got the whole tumour out (14cm!) and that they would take me to the PACU when they could see the white in my eyes.

After three hours in recovery I was taken to the high observation unit and was reunited with my mom and Brody. Although I don't remember a thing there are some photos of that moment that are very special. I had a chest tube, drain, catheter, epidural, a central line IV in my neck, two different IV type things in my arm and hand, and this tube in my nose that went down my throat. As the days went on they were able to remove something almost everyday. I was so worried about not making it through the surgery that I didn't even think about how horrible the recovery would be. Being that imobile is the most dehumanizing experience. I felt so restricted and uncomfortable. I had a self administered pain button but the first night I couldn't reach it and I also couldn't move so I just lay there literally moaning and wailing out loud in pain waiting for someone to come help me. It stayed that rough for awhile. I was so swollen I could barely move. They had me stand up the day after surgery which is arguably the hardest thing I have ever done in my life. 

I got sent home eight days post-op. It was really hard. It still is really hard as I sit and write this twenty-five days post-op. I went three full weeks not eating more than two bites of each meal, my back feels like it's in pieces and I haven't slept through the night once since the surgery. I had my follow up appointment with the surgeons this past week and they said that they are very pleased with my progress. I am still not very mobile and have very low energy and can't eat more than a few bites but I am so happy to be here. I promised myself that if I made it out of this I was going to value my life so much more and I do. Brody and I are finally breaking free from our first basement suite as a married couple and we are moving to a new place that we love. I am headed back home to Abbotsford in the next few weeks to hug my loved ones that I thought I would never see again. I am going to be a bridesmaid in my good friend's wedding and I am so happy to be able to be there. I get to go to Toronto for the first time to watch Jill graduate. I get to eat pizza and sushi (hopefully soon) and go on dates with my handsome husband.I am going to soak in every moment of life. I feel lucky to be here.