As I await my morning doctor visit I decided to reflect on my time here. Although I am thankful for a lot in my life, I have also been taking a lot for granted. Simple things like texting, rolling in bed, or just making a simple fart! This whole experience has been very eye opening and even though I would never want to repeat it again, I am glad I was able to have this experience.
There are a lot of people out there a lot sicker than myself. I am so lucky to have caught this cancer early. I cannot stress that enough. There are so many young people on this GI oncology ward and I cannot help but feel sad for them. I have been given an upper hand and a choice. So what if I no longer have a stomach? I am alive and I do not regret the decision one bit. I know there are going to be rough days ahead but overall the trend is upwards and soon enough I’ll be back in action!!
Even though this may sound bad, but I believe that everyone should be sick at least once in their life to fully appreciate how lucky we are to be healthy. Being sick also opens your eyes to the giant support network that surrounds you and shows you that you are not alone and there are many many people who love and look out for you. It is truly amazing. I thank everyone for their continued support during this time. It has worked wonders for my hospital recovery. I know that I still have a long way to go but I will get there. I know it, I HAVE to!!
For those who are about to have the surgery or are considering it, I have decided to make a list of the toughest times I had at the hospital to put things into perspective. I know I am always super positive, but let’s be real, it all wasn’t honkey dorey here.
Worst times:
1) Gas pain – The gas pain the day after surgery and that night was THE WORST pain I have ever experienced in my life. No pain meds could even touch it. Do not eat a big meal before surgery. Biggest mistake ever and definitely NOT worth it!!
2) Epidural fear – I was constantly afraid that the epidural line was going to move and paralyze me. I knew this wasn’t going to happen but after that scare with me thinking it moved, I was always paranoid of lying on the line again. The line was checked 3x a day but it still was scary. Not to mention I developed a bad rash around my buttock and left shoulder that was likely due to the battery of meds being sent through the line. That being said, the epidural line did save me from a lot of unnecessary pain and I would recommend it over the alternate morphine pump. I personally was just afraid of it the whole time due to my knowledge of the spinal cord and treating people with spinal cord issues.
3) Bed sores – I was very close to developing a bed sore over my coccyx due to lying on my back for two days. One night I felt a sharp sharp sting on my tailbone and then felt a little bump form. For the next 2-3 days I kept off of it and it healed. It’s something I knew that could happen but I thought I was rolling enough. I was really wrong.
4) Not breathing enough while on morphine – I kept setting off the O2 monitors in step down because my O2 level kept dropping due to the large amounts of morphine I was receiving through my IV. It was scary because I had to consciously think about breathing while I was getting it and when I didn’t, my breathing became super shallow and the alarms would sound. I was on supplementary O2 for two days because of this.
5) Finally, the day of nausea – I have never felt more sick in my life. It really stinks when you fell nauseous and then you can’t vomit to stop the feeling. It was like I was stuck on the helicopter ride I took in Hawaii for a full 15 hours. I was so weak and tired, I couldn’t even hold my head up that day.
So my list is fairly small because the good times definitely out weighted the bad times and the bad times are becoming a distant memory. Every day is better than the one before and I am really looking forward to getting home and trying to get back to my new ‘normal’ life.
Thank you all for following me during my recovery time. I will continue to blog as much as I can for the next few months as I recover at home.
Kia Kaha!
Cytosine Deleted - Life with the CDH1 genetic mutation 