People tell us they are inspired by my attitude while tackling this and how well I am doing. I feel like a fake when I receive those comments fake because of moments like this picture. Moments where I don’t feel like I’m doing very well at all. I feel like a big baby.
It was 3:13pm Friday. My shins, ankles, and top of my thighs were burning with bone pain. Sound escaped from my body in protest with every movement I made.
This is what Taxol is doing to my body. This picture was the beginning of at least six hours of me seeking relief. Six hours of waiting for the over the counter meds to build up to a level of touching the burning.
Was it the worst pain I’ve ever felt? No. That’s why I’m a big baby. Two hours before I was fine. Six hours after this picture I looked worse.
I wear a “it’s all okay” mask. We all do. Cancer, no cancer, when someone ask how it’s going most of the time they don’t expect to really hear how it is going. Sometimes I have just enough energy in me to hold up that mask.
Other days the energy is gone and if I get caught by one of the few people who really want to know how I actually am doing , I have to assess whether it is okay to let the mask crack. An example of this happened at work this week. I was using all the energy I had to hold my mask up when I was headed into a meeting and then I encountered someone who is so amazing for my soul but not so great for my mask. When she asked how I was doing all I could tell her was that I couldn’t talk to her right now. I couldn’t just say “I’m okay” because it wasn’t true and I didn’t have the energy to make it convincing. I couldn’t tell her the truth because I would cry and I was headed into a meeting. I felt guilty for telling her I couldn’t talk. It’s actually a compliment to her. It means that when I show up with that person I am unable to give them anything but my self that is raw and vulnerable. What would happen if I showed that self to everyone? I don’t know.
My mask is completely crumbled in the picture. I am trying to convince myself I am okay. I am trying to find something to make me believe I can actually get through this. I compare myself to others and tell myself to stop being a baby. I think about the young teenage girl we know who has been fighting cancer longer than me how nasty that fight has been. She picks herself up and is still going. I think about all my fellow pink sisters who didn’t have as easy of a time with “The Red Devil” and how after it Taxol feels like a relief.
I was blessed with an easy road with the one that was supposed to knock me down. This isn’t supposed to be easy. I guess I kind of feel like I deserve this since the first half was so easy. Like survivor guilt only fighter guilt. That kind of mentality makes it hard to want to do something to get relief. Don’t get me wrong. I’m doing stuff for relief but it makes it hard to trust the relief will come. It makes it hard to relax and feel like I deserve to feel better.
This is long and rambling. Let me end on love. It was Valentine’s Day yesterday and all I could give Carl was tears.
Do you know what Carl gave me? Patience, compassion and hope. I can’t imagine it’s easy to be in the role of spouse to someone battling cancer. My conversations rarely stray from cancer. I think in treatment time. I’m here but sometimes I’m not really here. Yesterday he sat at home on a Friday night, listening to me moan and cuss until it turned into tears. He is the one that brought me relief. Not Tylenol and Aleve.
He stood up to the demons talking in my head. He is the one who said “What do we have to do to make this better.” Key word we. Not me which is what I was trying to do. Not he which would make me feel helpless and even more of a baby. We. We who are both going through this in same but different ways and we who get through it better as a we. That’s love and that’s the best gift he could have given me. I finally fell asleep and while I did he took this picture after I let go of his hand and the he fell asleep by me on the couch.
