"You're So Lucky" A Reminder to Count Your Blessings

Today is my 3rd anniversary of finishing treatment. Anniversaries of any kind that come from cancer are always bittersweet. There is still pain there but there is also this wealth of gratitude and pride. Even though I’ve been public and shared my process of healing I have left out a lot of the struggle. I didn’t want people to feel down when they saw me so I hid a lot of that suffering. Ultimately the person I was hiding from was myself. The person who I needed to recognize my struggle the most was myself. I kept moving to avoid having to face it. I’ve shared a lot but there were things I’ve kept to myself, until now.

Part of my treatment plan was to remove the section of my colon that was covered in tumors. To allow that to heal I had to have an ostomy bag for 6 months. It ended up prolapsing and my intestines fell out of my belly. Everything that had to do with that ostomy has been a huge source of embarrassment and pain. The doctors couldn’t get an ostomy appliance to stick to me for a full day. It should be able to stay for multiple days or longer. I couldn’t leave the house in fear of a slip. Because the ostomy was made to be reversible it was done higher in my intestines so it was more bile than solid. I know this is disgusting to hear but it’s important to mention to understand what I had to deal with. Since it was more liquid it was easier to leak out and would burn my skin as it got around the appliance. My skin would welt and burn from the stomach acid, making it even harder to get an appliance to stick.

Some nights the ostomy would be very active. I would wake up to the bag so full that it was too tight to release any pressure without spilling it. On the worst nights, often soon after I fell asleep while on chemo, I would wake up and realize it had popped off and spilled into the bed. I would have to get up and put all the sheets in the wash, clean myself off and then work to reapply a new bag. If anything would leak out I would have to start all over again. Sometimes it would take me hours while I was so weak, tired, and confused. I’d lay in the tub, crying and covered in stomach bile that wouldn’t stop coming out long enough to put a new bag on. I’m not ashamed to say the thought crossed my mind often to just end it right there. The thought of my life becoming whole again seemed impossible and pointless. Having lost so many friends to suicide I knew what it would do to my loved ones and I’d say "just one more day". The only thing I ever prayed for while in treatment was to not wake up. I felt done with life.

I made it through my time with the bag and after my intestines were put back in and I was all sewed up I thought life would get back to normal. It was just the beginning. I have had what the doctors called an abnormal healing process. It should have only been a few months before things were back working as they once were. I had horrible digestive pain that was so intense that I’d have to go down to my knees and double over in pain. That wasn’t even the worst part of it. I had no bowel control. I would have little accidents throughout the day and at night it was completely out of control. I’d have to sleep in swimming trunks with a liner in it to try and catch as much as possible. The swimming trunks were the easiest to clean. I hadn’t had a full night's sleep in years. I would wake up every night covered in shit and have to go to the bathroom to clean myself up and change. Often it would happen multiple times in a night. It dictated where I stayed and how I spent my day. I’d have to bring a little kit with me with wet wipes, some trash bags, liners, and extra underwear everywhere I went.

It's incredible what we can adapt to as humans. Over time it became more normal and I learned how to maneuver around it better. That isn’t to say I felt good about it. Every time it happened I was ashamed and it would take me back to all that I’d been through. As soon as I’d feel that slip or wake up with a mess all these painful memories would come flooding in. I’d be transported back to that tub, covered in bile and feeling all alone. The breakup, losing my career, losing my health and freedom would hit me all at once. It was a constant reminder that kept me feeling trapped as if I had never really finished treatment. When I thought of traveling somewhere or having a relationship all these fears would come in. How could someone love me or want to be with me if I shit the bed every night? Every time I shared a room with friends I was scared of what they would think or if they would smell it and be grossed out by me. If there were talks of camping I’d have to make an excuse. There was no way I could stay somewhere that didn’t have a bathroom and shower close.

The second time I went to Bali I ran into a friend I had met on my first trip while I was walking down the road. He was with a group of gorgeous girls and asked me to join them. I went with them to hang out and felt terrible. Here was this guy who was full of life and charisma. He seemed carefree and was the life of the party. Everywhere we went there were people who would yell and get so excited to see him. It’s how I felt before I was diagnosed. Now here I was with all this baggage on me. I was no longer carefree. It was as if my personality was stolen from me. I had started having social anxiety and felt uncomfortable around new people. I was already in my feelings and then I had a really bad slip and had to sneak out without them noticing. I got on my scooter, covered in shit, and cried the whole way back to my hotel room. It felt like I hadn’t made any progress and was still in treatment. I felt alone and disgusting.

This has been my life for the last couple of years. I don’t want to seem like it’s been this horrible time, it’s been amazing and I have been beyond fortunate to experience all that I have. Since I didn’t share a lot of these hard times that came about after treatment I get messages a lot on my social media from people saying “wow you’re so lucky”. None of this has been luck and I’ve grown to really dislike the word because it discredits the struggle and hard work that it took to get where I am. I have been able to travel the world but I had to give up my home, my dog, my friends, my things, and my stability. “I wish I had your life”. You can! You can get it easier than I did but you’ll need to make sacrifices too. You will have to get out of your comfort zone and give up a lot of luxuries to go after something that isn’t a sure thing. You will have to avoid going out on weekends, eating out, you may have to downsize where you are living, or sell your vehicle. You may have to sell your belongings, work extra shifts, and cancel your monthly subscriptions. But you won’t have to give up your health, you won’t have to clean shit and bile out of your bed at 3 am, you won’t have to continue to do your scans in foreign countries but you may have someone message you and tell you how lucky you are. I hope when that day comes that you can reflect on all that you gave up to get there and feel proud, the same as I do today. I hope you don’t discredit your sacrifices and call it luck. I hope you have the strength to correct them and share your story.

Today I will buy a pair of white underwear, wear them during the day and sleep in them without fear of ruining them. It’s been a dream of mine for 3.5 years and today is the day on my 3rd anniversary of finishing treatment. The next time you look at someone and say, “wow they are so lucky, I wish I had what they have” remember that the person you are envious of may want what you have that you have taken for granted. I would’ve given up everything I’ve seen and experienced just to be able to wear white underwear. On this day I am grateful that I didn’t have to. Today I am proud.

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