They Both Begin With “M”

Tate has experienced both highs and lows these first few weeks of Maintenance and seems to have landed somewhere in the middle now the side effects of the drugs have lessened. When my friend Stacey asked him how he felt today his response was, “It’s not good, but I feel a lot better.”

Monday we met with the Homebound Instruction teacher that will be helping Tate with his last high school courses. He needs to complete one semester of government, one semester of economics, and two semesters of English to graduate. Greg, Tate, the teacher (whose name I am not sure I have permission to use), and I sat at our dining room table for an hour discussing school, treatment, and Tate’s needs and abilities. It took only a few moments for Greg and me to realize she is exactly the teacher Tate needs right now. She gets it. She will be instructing Tate for two hours every Monday and Wednesday morning, his health and treatment schedule permitting. It has been wonderful to walk into his room to check on him and find him reading books! He is reading Fahrenheit 451 for English and has a couple text books for Government and Economics. Tate is not physically able to write much, but he has been trying to complete a few worksheets, scrawling a few pertinent words to answer each question.

There were three days in a row Tate woke up in an alarming amount of pain. His bones hurt, his muscles hurt, his skin hurt. His everything hurt. He could barely transfer himself from his bed to his wheelchair to get to the bathroom. We had to cancel his physical and occupational therapy appointments because he was in too much pain. Greg suspects it was the Vincristine; Tate blames the steroid. Whatever the cause, Tate worked through it, taking Oxy only when he felt it was absolutely necessary.

Tate was able to resume physical and occupational therapy last week. He has been using his Gandalf staff to walk from his bedroom to the TV room to see the dogs and banter with Greg. He comes to the kitchen in his wheelchair to load up on water bottles and snacks to take back to his room. There was a time when we needed to bring everything to him, but now it is time to encourage him to get things himself.

There is a new twist to Tate’s neuropathy; his big toes have suddenly curled up in the same way his fingers did. He can’t straighten them. He keeps getting hit with all these weird things that will hopefully go away or mostly go away after his treatment ends. On the bright side, his hair is starting to grow again. He has several strands that are about 1/4 inch long already, and you can see a 5 o’clock shadow of sorts where the rest of it is brewing.

I am getting used to giving Tate his new meds. It was really daunting at first; I would stand in the hallway reading and re-reading the instructions before giving him the pills. He gets 2.5 or 3 Methotrexate pills every night depending on the day of the week, and he gets 14.5 Mercaptopurine pills once per week the first three weeks of the month but not the fourth. Tate’s nurse emailed us to make sure we didn’t have any questions, and my biggest complaint was “Why do both of the home chemotherapies have to begin with M?” I have legitimately woken up in the middle of the night worried I gave him the wrong “M” medicine. She didn’t respond to my ridiculous email, which is completely understandable. Ha ha ha.

Tate spends a lot of time hanging out with his cat Atticus. Tate, like many cancer patients with compromised immune systems, has been very isolated, and it has been so hard on him. I know he misses his friends and his freedom. Cats are unpredictable, and I worry he’s going to get scratched again, but more than that I see Tate’s demeanor change with more interaction with a furry companion. It’s the same reason hospital have pet therapy animals visit patients. I would be happy to hang out with Tate all the time (!), but there’s only so much a 17-year old can tolerate from his mom. That’s just how life works.

Scott came home with a cold yesterday and is feeling persecuted for his sore throat and runny nose. Scott obviously knows Tate should not be exposed to illness but still can’t help taking it personally when I ask him to put on a mask and spray down the bathroom after he uses it. Life will not always be this way, but I can see I am hurting Scott’s feelings without meaning to. I am not sure how to handle it more gently. He was bent out of shape enough to go to a friend’s house for the night and took all his laundry with him. All I can say is that the friend’s house is going to have Scott’s socks all over the place because that is what happens every time he does his laundry here.

Tate has a busy week coming up! Monday and Wednesday his Homebound teacher is coming, Thursday he has physical therapy, and Friday he has occupational therapy. My mom arrives Wednesday for a week-long visit. The following week he will have an appointment with an oncologist and another spinal tap with chemo and steroids if his counts are high enough.

I personally had my first normal(ish) day since Tate’s diagnosis last weekend. I went for a hike with two incredible ladies and then to Barnone where we shared a carafe of sangria and some burgers on the patio. I have really avoided busy places, not wanting to be the person to bring home an illness of any kind to Tate, and to be sitting outside enjoying a meal with friends was such a blessing.