Lately in my dreams and even in my day dreams, I see myself often walking on a tight rope. I think this is a great way to describe how I feel about my life lately. Bobbling along this path of life, taking one step closer to death and then a step back closer to “normalcy”, all while feeling that I could just “fall off” at any moment (if this makes any sense). About six weeks ago I was told what my life expectancy looks like. For the first time since diagnosis, my expectancy was measured in months versus years. I was told to get my affairs in order, make sure Trevor had all of my passwords and that if there was anything I wanted to do, then make sure I do it. I struggled with this last one because in reality all I WANT TO DO is LIVE. I want to be here with my kids throughout their lives. I would trade anything for that.
I am so saddened at what my life has come to because of this disease. I always was a hard worker and did so many things. Now the smallest task takes a lot out of me. I am trying to organize my life in a way that will be easier for Trevor to navigate in my absence. Trying to set my kids up so that it will be easier on them when I am gone and so that they will have the support system around them that they will need. Getting the house in order and getting rid of all of the extra things that aren’t needed. It is sad. Sad to try to prepare a life that doesn’t involve you.
I started my new medicine, Erubilin, about six weeks ago. The actual drug is only a two minute push into my port. When I started the med, I tried the scalp cooling in an effort to save my hair. It didn’t work as most know and now I am rocking a bald head. It’s funny b/c for the past 6 1/2 years, one of my biggest fears was being bald. I actually chose medications based on whether I would lose my hair or not. I am not sad about being bald. I am actually having some fun with it! I was so nervous to shave my head b/c I was nervous for the kids and how they would react. My social worker suggested asking the kids to help me do it. Initially, they both said that they did not want to help. Quinn then changed her mind and said she wanted to do it- proving to me once again that she is tougher than I give her credit for. Colin wanted nothing to do with it. On a Friday night, Quinn and I got started. We laugher as she cut chunks of hair off of my head and then Trevor and Colin joined us. Each of them cutting pieces- laughing at my mohawk and then Trevor had the hard job of shaving my head and cleaning it all up- nothing a husband should ever have to do for their wife.
My recent bloodwork has shown that this medicine is possibly working on my cancer. As my dr says, “we celebrate this news until the next time we do bloodwork and it shows something different.” It’s hard to celebrate this news when I know what we are dealing with. There is no cure, there is no fixing this or coming out of it. Death is the end result of this……now we just hope that we can delay that outcome for as long as we can.