Paraphrasing

Posted On June 28, 2020

I read a quote recently that said quite logically that where you direct your attention is where you live your life. Or something like that.

My first thought was that I have devoted my life to Instagram; scrolling through pictures of crossfitters, Basset Hounds, and orphaned baby elephants is a favorite thing! Though I concede that getting lost in my phone is an empty way to live. My second thought, the one that came up from a deep part of my being in such an honest way I couldn’t ignore it, was that most of my moments are a mix of worry, fear, and grief whose sum I can only describe as despair. It’s a heaviness I’m aware of before I’m fully awake in the morning, and it’s the lump in my chest that sends me to sleep at night.

I’m so afraid to lose him.

Things are supposed to be pretty routine in the Maintenance Phase, and while Tate has had short stretches of this over the last year, it seems he’s still usually struggling with something. Today marks day 14 of stomach issues and abdominal pain. When we brought it up at his appointment Friday, the Nurse Practitioner Angie seemed pretty concerned. She asked a lot of questions, instructed us to increase his Lanzoprozale (acid blocker) to twice daily and sent home a stool collection kit for him to use. We’ll have to see where this leads. My distraught psyche is already in a panicked tailspin, which is exhausting to everyone and, worse, it’s likely harmful all of our overall well-being. To be fair, during this crazy COVID-19 quarantine situation, I’m only around Greg and Tate and they are experts at hiding when I’m a mess.

The rest of Tate’s appointment went well. His ANC is perfect, and the rest of his numbers were within range. He has gained 3 pounds, but he’s still super-skinny. Tate was cleared for his Tuesday morning Lumbar Puncture with intrathecal Methotrexate and Vincristine. Check-in time is 6:15am! It’s early, but that means he’s the first patient and the waiting room won’t have any people besides us, and that’s the safest thing.

It’s not all bad, scary stuff here. I think I’m just writing when I’m having a particularly difficult time getting out of my head. I’m sorry for spreading my misery instead of my optimism. This is why Greg and Tate hide. Truth!

Tate is uncomfortable going to his physical and occupational therapy appointments since Coronavirus took over the American landscape. For him, the risk of being exposed to the virus at a busy clinic outweighs the benefits of going. Not wanting to lose any ground he has fought so hard for, he has been doing exercises at home a few days per week and walking around the block once or twice daily depending on how he feels.

I am SO GLAD my many years of being a gym enthusiast have given me a working understanding of muscle groups and proper form. Add that to my fairly decent collection of workout gear, and we have almost everything we need to give Tate a few decent, albeit basic, exercise sessions per week. I found some perfect, brand new ankle weights on Craigslist and met two very not scary young women in a parking lot to purchase them. I now have my eyes on a foam wedge on Amazon that would help with Tate’s leg exercises, and I bought a piece of plywood with the intention of building a table-bed sort of thing. I always got so upset with his physical therapists for pushing him so hard he would often leave injured and need several days to recover. Now I find myself running his exercise sessions, I have learned it doesn’t take much to be too much. More than once I have done the same thing to him. Tate and I both learn every time it happens. Sometimes it’s Tate pushing himself beyond his limits; sometimes it’s me asking him to do 12 reps of something when he should stop at 8. Looking back, it’s a good thing I didn’t storm into the therapy place trying to pick a fight every Tate walked out limping or injured. It would have done more harm than good, and I wouldn’t have had the proper perspective.

Tate’s favorite exercise days are when Violet hijacks the workout space. She never saw a soft surface she didn’t want to sleep on, and my pretty yoga mat is clearly irresistible. Tate loves having her there!

My goal from here on out is to update the Dwayne once weekly. It’s time I shut down my pity party and share what’s going on with Tate because that’s who this is really about. Thank you for sticking with us, good times and bad.

S.