IT'S GOOD TO BE OK

How are you?

People ask this question out of habit and while some people truly care about your response, most people inquire without really wanting to know and maybe not even tuning in long enough to hear your answer.

The automatic response becomes, "Good. How are you?" without really thinking about how you truly are.

But good isn't great, is it?

If you respond with anything less than "good", it invites speculation. 

I have stopped responding with "good" in these situations, mostly out in public. People are just being polite and it has become so commonplace for this to be the go-to exchange. 

One person recently started a conversation with me by saying, "I'd ask you how you are, but I'm guessing the answer is pretty sh!tty!"

So, I recently started saying "okay" in response to the obligatory "how are you" inquiry and my daughter noticed the shift and said that it's weird not to reply with "good", but I told her I was having a hard time answering honestly when I don't truly feel like I am good. I don't blame people for asking this question when attempting to exchange pleasantries, it's just that sometimes things aren't all that pleasant. 

The abbreviation of O.K. is spelled out phonetically as "okay". The most commonly agreed upon theory for the etymology of the word O.K. is that it is an abbreviation for the phrase "Oll Korrect - a misspelling of "all correct". I don't know that things will be all correct, but we are trying to correct them one treatment at a time. Maybe someday it will all be fine. But for right now, it is ok and that's ok. We are ok. Everything is ok.

Eli had an appointment on Friday morning to check his counts and see if they had rebounded enough to admit for treatment and they were ok. They weren't good or great, but they were ok.

Walking into clinic.

Waiting for final counts.

I had all of our belongings packed incase he made his counts so we headed to get some breakfast and then back to the hospital airbnb. We've got a corner room on the 4th floor with a view of the foothills and the biggest window on the block. 

Before treatment.

Getting settled.

After a couple of boluses for hydration, he started on the methotrexate (MTX), which dripped over 4 hours along with sodium bicarbonate that gets continually adjusted depending on the PH of his urine, which needs to be at a 7 so his kidneys aren't damaged. 

He slept most of the next morning/early afternoon on Saturday, finally emerging from his teenage boy cocoon at about 1pm and didn't have much of an appetite, but otherwise felt ok. He ate some peanut butter crackers and then was hungry around dinnertime. The hospital cafeteria isn't bad and the menu is pretty decent for kids, but he isn't too interested. I got myself a breakfast burrito and sat in the dining area with a combination of hospital employees and other families.

I wonder about the other families as I pass by them in the hallways and share the silence in the elevator. We are all here for different reasons, everyone with a different story and someone they love inside these walls. We are all probably a little or a lotta scared. I shared an elevator with a mom who was also bringing a bag of Chick-Fil-A to a hungry fourth floor resident. She asked what my child was having done and I told her that he was going through chemo treatments and had been diagnosed with cancer. We walked the rest of the way until we parted ways and she told me that she would pray for my son. Hopefully we will all be ok. I wonder how tough this is on families, single parents and families with young kids still at home and parents without the flexibility to spend time at the hospital. 

Twenty-four hours after treatment, Eli's blood was drawn for the MTX level and he was at a 5.48 and he only needed to be <10 within the first 24 hrs and that was without any of the Leucovorin (folic acid) to help clear the MTX and protect his kidneys. Leucovorin is basically the antidote to the toxic MTX. Eli then got the first dose of the Leucovorin and continued to receive a dose every 6 hours.

Forty-eight hours after treatment, his blood was drawn again and he was at a .24 and he needed to be <1 so his body was doing what it should do to get this junk out.

We brought his XBOX this time and he was able to hook it up to the gaming monitor and play with his friends. The amount of joy of being able to play with his buddies was immeasurable. 

Gaming.

I've kept myself busy by watching Only Murders in the Building, which I am enjoying. I think I will start watching Yellowstone next.

It was Riley's birthday on Sunday so she stopped by to see Eli and hung for a bit until he started dozing off.

Labs were drawn early on Monday in case there was a chance we could go home. We were crossing our fingers that he would be <1.0, but not holding our breath. Sadly, his MTX level was 1.1 - so close, but not close enough to blow this popsicle stand.

So we redrew labs at 5:30pm and waited an hour for results only for him to be EXACTLY at 1.0. The oncologist said that we could redraw later that evening at 10:30pm and they would get the discharge paperwork ready to go IN CASE his level was acceptable. I got him some dinner and joked that his labs were going to come back with high levels of Chick-Fil-A. The chemo treatments might have taken the hair on his head, but so far, he still has his feathers. 

At around 11pm the results of the third blood draw of the day were in...drum roll please .09! We could go home, but now we were settled in and sleepy and Eli just wanted to go to bed and leave in the morning, which is what we did. 

So how am I? I am ok!

We are now home and it is SO good to be home. I think he was in the shower for 1 1/2 hours, washing away the long weekend. We have a couple of days before we go back to clinic on Friday to see if his counts are good enough to continue another round of MTX next weekend.

Rinse. Chemo. Repeat.