Busy

There's never been anything about this journey that's been easy. Though at times I pretend that there are things that are. If I make things easy in my mind then sometimes they are. Though this last bit was impossible. There was nothing that could make me see things as anything other than what they were. No matter how I tried.

I thought I‘d get used to every medical situation I’ve had to go through. But you don’t get used to this. I don't know how many ambulances you have to ride in before you get used to it. Since this started, I think I've ridden in three. It always sucks. This is no exception. I had started to go back to my salon to try and work on occasion.  Chaz has been amazing in accommodating this. One haircut here, a color there. It made me feel like I was worth something. That I could be creative. I miss my career more than I ever thought I would. I love my co-workers and my clients. The daily rapport is something I truly crave. This day I pushed myself too hard. And I paid for it. I went in and felt awful. In the middle of doing a color I had to excuse myself. I ran to the bathroom and the door was locked. I ran to the back and had no choice but to throw up in a trash can. You know you’ve reached some level of “is this really my life?” when you’ve done that. Ugh. I don’t recommend it. My co-workers were amazing. Amber graciously finished my color for me while Chaz found a place for me to lie down while I writhed in pain. Vanessa called my family and the ambulance while Chaz sat quietly by my side to wait. I came in and out of consciousness during this time, but I always felt these amazing people around me, caring for me.

Avoid the Noid chemo

They both arrived within minutes of each other. The embarrassment of being carried out on a stretcher from work was horrifying after I had some time to think about it. But it took a while. I don't remember much about the ride. I finally got into the emergency room, then into a hospital room. The first few days I was sleeping under the influence of heavy pain and nausea meds. When I finally woke up it was a couple days later. I ended up staying for eight days. This was only a few days after my last eight day hospital stay. They did an upper endoscopy and discovered that I had the most severe case of esophagitis possible. This was causing the unrelenting pain and vomiting. I had open sores all over my mouth that lead down my throat. I couldn't eat from the pain so I slept and stayed on heavy pain killers. After eight days I finally was released and went to see my oncologist. Total time that I was out of commission in the hospital and bedridden was about 5 weeks. When I finally was about to start trying to gain my strength back I was 20 pounds lighter, very weak, and couldn't do much. I had no fat on my body and any muscle I had left was gone. I was skin and bone.

Even the hospital knew I was a klutz! 

Being in the hospital for 16 days over 2 separate occasions changed everything. I didn't realize how badly it had affected me until it was too late. My optimistic attitude disappeared. Depression that I didn't know existed creeped its way into my system and laid its hooks into me deep. Fear and Loss of hope curved it’s way like an evil curse into my psyche like I never knew it could. I thought I could get control of this. I thought I could do this and fight through it and be strong. But I falter. Even the most infallible need help sometimes. I was breaking after a year and a half of this torture. And it is torture. I never thought of myself as anything overly special. I was a normal woman with a happy life. But things happen to your strength of thought when pain invades every single day. When who you thought you were is no longer looking back at you in a mirror. The confidence that was always a casual but constant companion no longer shows its face and loss is all that shows itself. How do you find it again? And where do you go to get hold of it again?

The new drug was working. My doctor can tell because of the rash that reared its ugly head. He was excited about it. I was used to good skin. I could count on it, but it's gone. It's hard to get excited about dry cracking skin with bumpy blisters across your face and chest. It's supposed to be a sign of success. That it was working. How much poison can I take? This was a sign of success? But it's killing me. Slowly, bit by bit I was losing. I felt like letting go. I felt like giving in. The pain, the nausea, my physical existence was nothing that I ever knew myself to be. I hated the medication as badly as the illness. And I didn't want to know this stranger masquerading as me any more. Sixteen days in hospitals. This time. About a month weak, aching, depleted, and bedridden. Skinnier than I've ever been.  

I'm so tired. I'm not sure how long I'll last. It feels like giving up, letting go. This time at the hospital, I felt so bad that gave myself permission to let go. I gave in. Right then it would be ok to say goodbye. It felt like death would be a warm welcome compared to the life I was living. Where everything was dark, painful, and full of sorrow. I don't want to die. But sometimes it feels like it's nearby. And it feels comfortable. Strange. For a time that I couldn't determine. I waited and thought that I no longer could survive this. It was dark. And strangely it was the saddest form of peace that I've ever experienced. I began to wait for the beginning of the end. It was the first time I've ever let go of hope.

"Without music, life would be a mistake" Friedrich Nietzsche

And then one day I woke up from my ridiculous pity party and got mad. I was disgusted with myself as I came to my senses. I had let go of who I was to become something I wasn't. All I needed to do now was change my mind. It as as simple as that. So I did. Luckily I’d had a trip planned for months to visit Marti and Rich. Perfect timing. I forced myself to find the strength to go. I scheduled wheelchairs through the airport to the plane and off. It was hard. 20 pounds too skinny with no muscle tone and on the verge of tears constantly. It’s amazing how kind people are when you're bald, skinny, and in a wheelchair. It gave me strength. That little bit of kindness can help more than you'd ever know. Rich picked me up from the airport and Marti had rented a wheelchair for me for the week. We went to see Chris Stapleton that night. I felt the apprehension of being in a wheelchair during a concert. I even tried to get out of it. Thinking that maybe I could do this without it. Marti gently reminded me that I might need it. Honestly, There was no way I would have made it without that chair. And the kindness continued. As Rich pushed me through the crowd, it parted ways for us. Then security picked us out of the crowd and got us around the lines quickly and passed everyone up. Then true to form, my amazing friends and music helped me find myself again and laugh and heal. Marti looked at me and said, "It's just a bump in the road." It made sense. And for the first time in a while, I again decided it was time to beat this thing. 

In the time I was out of commission, I missed a chemo, which I was ok with, but the 3 concerts I missed I’m still bummed out about. My Friend Rachel had planned a trip for us to San Diego and I was stuck in a hospital bed. Another amazing thing I was too sick to be able to take part in. Rachel was so incredible that the plans didn’t matter. She only wanted me to get better. She assured me that we would go another time. Fei Fei actually got James Murphy from LCD Soundsystem(OH MY GOD!!!!) to record a video telling me he hoped I was getting better and Mike and Kieran got Mark Farina(WHAT???) to do the same.  What have I done in my life to deserve the amazing friends I’ve got? Even with all of the tough times I go through, it’s not lost on me that my life is still amazing. And it’s because of the people that fill it.

Our minds are powerful. We can decide our fate. I refuse my initial fate and am deciding to live. The way I want to. And to cleanse my body. I refuse this illness. I'm going to heal. I'm going to refuse cancer. It's left my bones. Next it’s going to leave my lungs, then my liver, then my colon. I'm going to win. I've got too many good friends, family, and good times to enjoy. Don’t get me wrong. Climbing out of this hole of illness is going be tough, but it’s taken a while for me to get this way, It’s going take a while to build myself up again. I tried to go on a walk the other day. I walked a half mile. This would’ve been a nice stroll in the past, but this day it was Mount Everest. But I did it. And every time I do it again, it’ll get better. Anything worthwhile is worth it. And this is worth it. I will get strong again.

 I’m going get busy living.

"I guess it comes down to a simple choice really. Get busy living, or get busy dying." 

~Andy Dufresne  'The Shawshank Redemption'

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