Brain Dump

There’s a tremendous backlog of information taking up space in my brain – so many things I’ve wanted to write about but haven’t – so I’m calling this post “brain dump” and whatever comes out comes out.

2017 has been quite the roller coaster. January knew that our swing was weakest when it came to her curve ball, so here’s what she and her “sisters” (especially the “extra bitchy” sisters named June and October) threw at my son: 1) relapse #5, 2) more radiation/chemo/surgeries, 3) scary progression of disease despite treatment, 4) MORE radiation, 5) No Evidence of Disease!  YAHOO!! 6) two precious months of hearing nothing from cancer, 7) only to find out in October he’s facing relapse #6… and the cycle begins again.

Ben’s on a daily oral chemo. He isn’t losing his hair but he feels like crap pretty much all the time. We haven’t changed how we approach this beast, Ben is still in charge of choosing (or not choosing) the treatment plan. Unfortunately, at this stage of the game, there aren’t many choices. And the options that do exist are terribly unpalatable. Right now this daily chemo regimen is the best option available.

The biggest change we’ve made was pulling Maddy out of school. She’s working with the same home/hospital teacher as Ben, which is awesome because we love her. Anyway, the school year got off to a rocky start for Maddy. An incident occurred that shook her to the core. I will not share details out of respect for my beautifully brave daughter, but it was enough to generate some pretty intense anxiety. And then once we received news that Ben had relapsed again, we realized that sending her to school to dazedly shuffle through the halls wasn’t what she needed. She wanted to be with her brother, so that’s what she’s doing. Her friends have totally rallied around her in support, coming over on the weekends for sleepovers and the usual 13-year-old stuff. Her pals are amazing and I’m greatly indebted to them for bringing any amount of joy to her life.

I keep trying to write about bucket list right here but I’m struggling. So let’s say this: we’ve had some neat experiences over the past couple of months… we road-tripped to Yellowstone, we spent a week in the mountains, we’ve gone zip-lining, and segway-ing and done clue rooms… but I think Ben has decided that a big trip to Hawaii is out. I’m not sure when he shifted away from that, but he started thinking instead about a trip to Ireland. After some consideration, he ditched that idea, too. So, here’s what we’re doing: Ben does not have friends in the traditional sense. He doesn’t have sleepovers. He doesn’t go out with his pals. But he does play online with LOTS of kids his age all over the US. I didn’t realize he had this wonderful network of friends that he’s been playing video games with for years. They have become his closest compadres. Don’t worry, we are vetting each and every online persona to make sure they aren’t 56-year-old pervs still living in their parent’s basement. And then, once they pass the “background check,” we’ll figure out a way to get them all together for a heck of a party. I was completely humbled by his idea of wanting to meet the very people who have had his back all these years.

Dr. Macy reminded us that Ben reaching NED status again is unlikely, which she immediately followed up with “but he continuously surprises us.” My take-away from that is that there is still hope. For whatever reason, this is our life. I don’t understand it. Sometimes I hate it. Many days I’m confident that it’s going to kill me soon. In fact, a moment of me grabbing my left arm and grimacing in pain led Matt to ask if I was having a heart attack. My response was “I really hope so.” I don’t think I meant it, but it sure flowed from me like it was the winning question on Final Jeopardy. Regardless, the pain dissipated and I’m still here to fight another day.

For now, I’m taking my cues from plants living life above the tree line. If you’ve not traveled in the mountains, the “tree line” is defined as an imaginary boundary above which trees will not grow. This line in the Rocky Mountains is somewhere around 11,000 feet. Anything above that has no shelter. Just the blistering sun, threatening storms, avalanche danger, rugged terrain and the wind whipping, sometimes at a hundred miles an hour. It’s difficult to survive above the tree line. But what these beautifully tough, yet delicately fragile plants do is lower their center of gravity and hang the fuck on. They ground themselves. So, that’s what I’m doing, too.

I see you coming, storm. I hear your roar. And I know you’re coming for us, bent on destruction. I’m tired. I’m scared. But I’M STILL HERE! I may not be standing right this second because your adverse weather pattern over the last 14 years has beat us down every damn chance you get. But guess what, bitch?

You haven’t won yet.

 

 

 

 

11 thoughts on “Brain Dump”

  1. Oh Sarah,
    I’m so sorry that you and your sweet family are stuck in the eye of this sh*t storm. While it was so sweet to hear your voice/read your thoughts, my heart is heavy for the battle you are on.
    Our youngest was diagnosed with A.L.L. in March 2010 and I saw first hand the cowardly bully that cancer is.
    As it lurks in the dark and prepares its next move, I just want to tell it to go pound sand and pick on someone its own size.
    Prayers from one Mama Bear to Another.

  2. I feel as if I know you and your family. With this said you and yours are always in my thoughts and prayers. The space you take up in my heart is enormous. Telling you that I admire you and am continually inspired by you is an understatement. When my thoughts turn to WHY. WHY. WHY. is this continuing to go on and on and on….I have to distract myself. It is far to much to begin to “deal with” AND I acknowledge you deal with this moment by moment. Love and thoughts and prayers❤️

  3. Thank you for this. Today was a day of not great news for our family regarding our son’s cancer. Not horrible; just not great. I can relate to your post, and it gives me strength and hope to carry on.

    Blessings to you.

  4. I’m so sorry that you have to write what you write but you do it so profoundly beautifully and real. I truly love you.

  5. Thank you for sharing! My son is a 12 year old cancer survivor, homeschooler, and avid gamer. What games does Ben like to play? I would like for my son to be able to play with him. Is he Xbox or PS4?

  6. You are my kind of warrior! I hope you nourish your own body and mind as you go on. You have just provided my weary brain much nourishment. Thank you.

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