Steroid Weeks

Steroid weeks are bad. There’s no other way to describe it. After the first two doses, Tate’s body starts to weaken. It seems like the mobility and strength he gained in the three previous non-steroid weeks are gone instantly. His muscles and bones ache, and it’s more difficult for him to stand and to walk. After the first two days, his mood turns dark. He makes a huge effort to be civil, and the look on his face doesn’t match the polite words coming from his mouth. It’s truly a testament to his character that he recognizes when the drugs are tripping him up and fights against them having control over him. By the end of the steroid week, he can’t sleep, he can barely stand, his appetite is weird, and his patience wears thin. Case in point: late last night when the rest of us were ready to sleep, Tate was buzzing around the house in his wheelchair playing with a laser pointer and wearing “bite me” socks.

Sleep comes at strange times for Tate on steroid weeks. Fortunately, big brother Scott is a night owl with a lot of free time and makes a point to hang out with Tate when the rest of the world is sleeping. And Atticus is ready for a nap pretty much all the time.

Here’s a peek at Tate’s morning and evening pill regimen on steroid weeks. (He takes two pills midday also, but they’re pretty simple to remember so I don’t separate them out.) Thursday night alone Tate had to take 21 pills. My first thought was, “Wow. That’s a lot of pills even though Tate only gets a half-dose of the daily chemotherapy pills.” The truth of it is that science has advanced so far that at-home treatment is not only possible, it’s successful. It’s extraordinary! This cluster of pills means less time at the clinic, less time enduring car rides, fewer needles being pushed into his port, and more time fighting cancer from the comfort and chaos of home.

I started putting the pills in this organizer to help prevent me from making mistakes. I feel like it has done that and more. Greg and I agree that it’s best if one of us is in charge of Tate’s meds so we don’t accidentally over or under dose him. Once I have set up the drugs for the week in this little organizer, whoever is home with Tate can make sure he takes them. Sometimes Tate announces he’s taking his night meds and then going to sleep. This organizer has created freedom for all of us while minimizing dosing errors.

More than once, doctors and nurses have warned us that they have discovered some of their patients throw the drugs away instead of taking them. Understandable! The kids know which pills make them feel bad and only pretend to take them. In their minds it’s simple solution. Now that Tate has access to his meds, I asked him if he was ever tempted not take his pills and say that he said he had. His eyes widened, and he said, “Oh, that’s way too scary. I would never do that.” The thought of his cancer coming back full-force and having to endure more treatment or even harsher treatment overrides the discomfort his daily and monthly meds create.

Falling asleep with his medication still on his bedside table is whole different story. It has happened to both Greg and me once. We brought Tate his pills in a little cup, bade him good night, and realized the next morning that he accidentally didn’t take them. Now we stand there and watch him take his pills, no matter the time of day. Surprisingly, Tate, who has always been very independent, appreciates that we make sure he takes them. “It’s probably a good idea,” was his comment. Chemotherapy does weird things to a patient’s memory. In Tate’s case, sometimes he can’t remember to take the pills sitting right in front of him.

Tate has a big week coming up! His last in-home occupational and physical therapy appointments are Tuesday and Thursday, and his first OT and PT appointments at a facility Friday are afternoon. Wednesday we are headed to the therapy place so Tate and the therapists can meet and they can assess whether it’s a good fit for him. Greg did a lot of research on the clinic, and I have the feeling it will be the right place for Tate.