Why and How (aka Cancer Sucks)

“He who has a why to live can bear almost any how.” – Fredrick Nietzsche

It has been a while since I posted my last blog. I attribute this lapse mainly to our return home and to a quasi-normal state with our kids, the house, my job, life in general. I also usually wait to write until I “need” to, until I feel a topic has been laid on my heart and the words seem to basically write themselves for me, essentially pouring out in a flow that if, left bottled up, would surely explode in some other less healthy and less therapeutic way than writing.

During our latest clinic visit, we had a conversation with the psychologist assigned to our family (On a side note: I hope some day to be able to write about the amazing team that Children’s has put together for Hazel. The breadth of the experience and resources offered to each family that visits this facility is truly monumental and we have developed relationships that will last over the course of our lives.). In that conversation, she made a statement that immediately struck me and has stuck in my mind ever since. We were discussing daily life and how we all were adjusting to being back home, having our family together, and getting into the swing of activities outside of the hospital when she said “Well this experience will forever change you, your kids, and Hazel. Not necessarily in a bad way, but you can’t go through this without being changed. It’s inevitable.”

It may not seem so, but that is a truly profound statement. Relatively few people that walk the face of this earth have a “before” and “after” experience. An experience outside of their control that, in no uncertain terms, changes the course of their lives forever. An experience that doesn’t just affect one area of everyday life, but shapes every aspect of a person’s very existence, even if in just minor ways. Cancer is that experience for my family.

Cancer sucks. If cancer were a person, I would find him/her and fight them to the death in the street. I would fight dirty too. Morals wouldn’t be an issue at that point. Cancer came after my baby girl, a precious innocent soul that has not even had a chance to experience some of the best parts of life yet. It changed her, robbed her of time spent with me, her mother, her siblings, and her extended family. Cancer made her feel pain she should never have to experience. It made her feel isolated and different at a time in her life that should be nothing but happiness, love and freedom.

Yet somehow, all of that isn’t even the worst part about it. The worst part is, cancer makes me watch. I have to watch as my vibrant young child becomes frail, loses her hair, and becomes so weak that she cannot walk upstairs. I have to watch as she has painful medical procedures, gets blood taken, and receives medicines so powerful that under any other circumstances they would be considered poison. I have to watch as she stares sadly after her brothers and sister as they attend birthday parties, ride bicycles, and play in the dirt while she is quarantined to our home. I have to watch as she cries, not because of anything in particular, but just because she knows this isn’t her normal life.

I know that all of this is necessary, that she will get better, become strong again and will be able to do the things that she loves. That doesn’t make me hate cancer any less. I hate cancer for her, I hate it for us, I hate it for the kids that we see each week we attend clinic. I hate cancer because cancer isn’t fair. It fights dirty. It attacks the ones we don’t expect. It attacks the ones that don’t deserve it. I hate cancer because I have no control over it and it takes good people away from those they love.

Our life has returned to a somewhat normal state. We are home, going to dance practice, birthday parties, skating parties, and school. We have family meals again, we sleep under the same roof. We enjoy movies all piled on the couch, our kids play with one another and our house is filled with giggles, and laughter and the pitter patter of little feet. But despite all of that normalcy, I cannot help but realize that some of it is simply a façade. My family now lives with an unwelcome house guest that at any point could create terrible upheaval in our lives again. We are reminded of this guest as we find small tufts of red hair on the couch or as we gingerly tiptoe around Hazel as she is walking to avoid throwing her delicate balance off and hurting her. Cancer entered our lives by force and we don’t like it.

This process does change you. It has changed us. This isn’t a cold or the flu, this is cancer. My life is happy, my little girl is regaining strength and each day we see more and more of the old Hazel return. My family is together, our friends have surrounded us in prayer and love, and we have begun rebuilding our life. Life truly is good.

But that life, our life, will never be the same again. Hazel may forget this experience as she ages and I pray to God that she does, but I will not. Never again will I wake up in the morning and NOT have a lump in my throat at the possibility that her cancer has returned. That fear will never, ever go away. It may fade and ongoing medical tests may prove that she is cancer-free, but for the remainder of my days I will remember that at one point there was cancer in my life. Cancer tried to take my little girl.

Each day is precious, but each day can be a struggle. Before Elizabeth and I go to sleep each night, as we are laying in our bed, listening to the soft night sounds of our little ones as they dance through dreamland, we always say “Today was a good day.” We are always totally exhausted and emotionally spent – a tiredness like none I have ever known before, but we never forget to say that phrase. Right now in this time of total dissention in our normal, it is vitally important to us that we remember each day is still a good day, a lovely day with our girl. Hazel is our why, and the how right now doesn’t matter.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10