Inside Out

As I try to put into words how life is, post cancer, it’s hard to explain. Grateful. Sad. Guilty. Scared. Excited. Loved. How is it possible to feel all of this at once? As you know, this forum serves as my therapy…so here goes, and thank you.

I’m forever changed. My whole family is, really. Some of that change is good, and some of it is ugly and hard and I want so badly to shake it.

Grateful. If it wasn’t for cancer, I would never know my son the way I do now. I would never have been able to finish his sentences and him mine. I would not have learned his quirks and his sense of humor like the back of my hand. I would have loved him well, but missed out on knowing him so deeply. Sometimes I try to picture my relationship with him at this point minus cancer entering our lives. It’s silly and torturous because it always makes me sad. I instantly picture him running long for a catch and then doing a little happy dance because he caught the baseball. I smile for a moment and then I ache for my boy who hasn’t been able to run or happy dance for almost 2 years. But, I’m also sad because if that was Mason, it would mean I didn’t come to know him deeply. Crazy, right?
Sad. It tends to hit when I least expect it. There are foods that Mason has asked me never to serve him again because they are associated to a memory in the hospital. I sometimes feel paralyzed in the kitchen as I try to determine what to make for supper because I don’t want to stir up any memories of chemo. He used to love bacon. It could have been served at every single meal and he would not have complained. His love of bacon turned into a massive craving of bacon to the point where his favorite nurse, Cathy, would bring him bacon. One day in the hospital when he had been put on a calorie count because he was losing weight quickly, he ate 36 slices of bacon. Cathy and I joked that he would definitely not need a calorie count much longer at that rate, but we weren’t sure if his heart would survive his new diet! Bacon became a way to show Mason we loved him. We even had bacon shipped to us from Kentucky and friends showing up at the hospital and our doorstep with bacon. I know it sounds silly, but the fact that Mason will no longer eat bacon and the smell of it makes him feel sick, makes me sad. There are a handful of foods with similar stories and sometimes just going grocery shopping creates a lovely reminder of the evils of PTSD.  

Guilty. Tonight I got a healthy dose of sad mixed with guilty as I came across a story written by a mom of a 10-year-old boy who is battling cancer. The image that accompanied the article looked strikingly similar to Mason in the thick of sick, sick cancer. It was a picture I never, ever would have shared because Mason begged me for privacy along the way and I tried to honor his wishes. He wanted no one to see his bald head or the tubes coming out of his chest. He definitely didn’t want people to see him when he was having a bad day, like this boy was clearly having – and had every right to have. He didn’t want people to know about the conversations we would find ourselves having about dying or the way he became so physically dependent on his caregivers for things that most kids take for granted. While I have a few pictures of these moments, they are mostly carved into my memory. They are carved in the deepest crevices that I can’t possibly forget even though I’d like to because they haunt me. The words this mom wrote, I get. I feel her pain deeply and then I feel incredibly guilty because there are countless families that are not lucky like we are. They have not come out on the other side with healthy children. And, they definitely have worse things to be sad about than bacon.
Scared. I’m scared that one day we will realize we were ignorant and should have never ended his treatment. I’m scared because our story feels too good to be true. I’m scared constantly that the other shoe will drop. I read of others on their journeys who have scans and get the “all clear.” It’s not that way for us. We had scans a few weeks ago and it’s just kind of assumed that no news is good news. We got a preliminary reading of “all clear” but we’ve had so many instances of “unusual findings” or “rare detections” after the preliminary reports that we don’t ever really know when to call it good or done until next time. I know this will get a little easier over time (or I hope because we have 10 more years of repeat scans). But, when our whole journey has been completely unlike any case known, it’s enough to bring in unsettling fear. That being said, it’s been 17 days since his last scans and I have to believe that if there was something to be noticed, it would have been found by now. So, we are 3 1/2 months away from doing it all over again.

Excited. If you asked me how Mason is doing, I would excitedly say, “Great!” and I would mean it. Because sports are still way beyond reach due to his physical limitations, we encouraged him to try something new. He decided to give piano lessons a try and he actually loves it! I’m not naive enough to think that we won’t be yelling at him to practice soon enough, but I recognize what a blessing it is that he truly enjoys it. And, I know that the benefits are unlimited for years to come if he sticks with it.

 He’s going to an amazing school every single day. He’s a little ornery, especially in the lunch room. He has some of the best friends a boy could have. He will receive an award for Courage next week, and gets to take his family to Disney World in a few short weeks thanks to Make-a-Wish! I mean, how can we not feel excited considering how far he’s come? 

Loved. God has chosen to let our little boy defy the odds and live. He gave us so many gifts along the way through His people. I’m learning of new people every couple of weeks who have been following our journey and were somehow inspired to live life a little better or more meaningful because of our story. When we first hit this difficult road, we recognized most of the little things – and big ones – that fit together to make our lives bearable at the hardest time. We recognized them as gifts that only God could orchestrate. Now, looking back, we can see the big picture even clearer and it’s extremely humbling. We are loved by our Creator. The deeper we fell, the more we had to rely on Him. We can now truly know Him as our Provider, Comforter, and Father.

Thanks for making it through therapy with me and listening through all of my feelings as I try to figure out how one lives post cancer. I feel like I have a new set of lenses that I see life through now and some of that newly gained vision is a gift and some is a curse. Your prayers for our family are such a gift. I hope you will also pray for the little boy, Drake, and his mom that I mentioned above and countless others that are in the battle of their lives. 

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4 thoughts on “Inside Out

  1. I’m speechless, but I want to thank you for sharing your heart. And Mason’s. What a journey! Your family has been a shining light for our God. Thank you ❤

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  2. Thank you for your brave and honest blog, Amy. I am a fellow EPiC mom and for us it has been my husbands illness several years ago with cancer. I can’t tell you how many “blog” posts I have created and edited, rewrote, never to have even start one as I was worried no one wanted to hear what I had to say. The scans are are right up there as the worst part, he had one today~ all clear, thank God, but the anxiety never goes away. Thank you for sharing your journey, you, Mason and family have been and will continue to be in my heart and prayers.

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  3. I am so thankful for your update—thankful for Mason’s clear scans and the return to a more normal life. I think of your family often. May God continue to use your story to bring hope and courage to others. He truly does give beauty for ashes.

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  4. Amy, You do not know me but I want to tell you how grateful I am that your son is doing well. I have known your husband, Matt, for many years as we went through school together from elementary through high school. Your story came to me via the Beatrice Class of ’89 Facebook page. Needless to say, I’ve been following your story off and on for quite some time. Your blog has been brutally honest at times bringing me to tears, but the highs have also made me smile. I’ve been praying to God for healing and they will continue as you continue to go through the follow up scans. I wish you ALL well as you continue to find your new normal with your latest diagnosis, but it sounds like things are looking up. And for that I praise God! God bless you all! Kristi (Huls) Kempkes

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