Walking a Tight Rope

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.

8 thoughts on “Walking a Tight Rope

  1. Mary says:

    April, this was hard to read, but thank you for sharing. I cannot tell you how sorry I am that you are going through this. You deserve better. You are so strong and you have been raising two beautiful strong kids. You should be proud. I love you!

  2. Monique says:

    Still one of the strongest and most badass women I have known. You have taught me so much about self confidence and taking charge. I sit here with tears down my face as I read your raw and honest words about this horrible disease that is taking over your body. I am so sorry you are dealing with this, but I am so fortunate that you have been sharing your story with us from the beginning. Every time I read an entry, I can hear your voice reading every word. I have see the hand gestures. I love you and thank you for all you have taught and instilled in me.

  3. Mary C says:

    April, it must be hard to share this news. I have appreciated you courage in sharing the raw truth about your cancer and many treatments. Your love and devotion to your kids and husband shine through. I could picture the whole family joining in to cut your hair. You are surrounded with love. Mary (Zach’s Mom)

  4. Mark Medeiros says:

    April, If the medal of Valor were to be awarded to people with sickness, you would be the very first in line to receive one.

    I am in awe of your courage to write these posts, which are not in vain. I only sometimes comment, but I always read them.

    The fact is, I only sometimes comment because I don’t know what to write other than the usual I’m sorry, and it must be so hard and all that.

    Reading your posts over time, I realize now that you make me aware of how precious life is. You prepare me to fight for it when my time comes and to fight for others.

    Thank you for these posts and for sharing something so personal and hard to write.

    I pray for you; God Bless.

  5. Amy says:

    April, I’ve been reading and re-reading this post for the last 24 hours. You’re in my heart always and I’m sending you strength and love. Thinking of you and your family constantly. Love, Amy

  6. Janice Mello says:

    April I am sure this was one of your harder posts. Seeing you on fb one would never realize what you are hiding behind that smile. I give you so much credit and I am so happy that you are giving you kids and family such a gift of amazing memories. When my sons cancer came back and we were told it had metastasized each of us never really spoke about it like nothing had changed the same when I got my husbands diagnose with him we had 3 weeks and then nothing again we never really spoke of anything. It’s not the thing you want to tall.about with someone you love becasue like you said life with them is all we want. That isn’t a lot to ask for but it is so hard for some of to.achieve and the most unfair part of life there could be. But looking back I really wished we had spoken of things there is still so much I wonder about becasue my husband did things that I either didnt realize,or just tool for granted. And my poor son one of the last things he said to me was he didnt get to do everything he wanted to do. I can see my your posts on fb this wont be you. Please know you and your family are always in my thoughts and prayers I admire you and so wish you get a miracle somehow. You are an amazing strong woman whether you feel like that or not your strength is what they will carry with them and get them thru their darkest days. Sending prayers, hugs and hope. 💕

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