The post that never ends…

This post started yesterday and continues into today. Continuing right now.

————————————

I don’t walk to the river anymore.

I don’t go to class anymore.

I don’t really talk anymore. 

Not that I have time for those things right now, but they aren’t a priority as they used to be. We are in groundhogs day. Same thing everyday. All you know is that today was the shittiest day, but there is always tomorrow, and that, most likely will be the shittiest day.

This includes my husband. Today he spent four hours on the phone with the drug companies. You know just trying to get the life saving drugs our child needs. So I can’t even complain to him. I can’t even yell at him. His day sucked too. Oh and he has to figure out how to pay for it all. 

Fuck. That sucks. Can’t yell at him. Although I do snap. There is no one else there. It’s hard to figure out who has a worse day. Mine at the hospital or him dealing with your time while having a child and wife in our time. You remember. It’s all relative. 

Like who do I yell at? Whose fault is this? 

I can’t yell at HQ. I can’t yell at “that bitch.” I can’t yell at the driver that cut me off. I can’t do any of these yellings.

It just leaves you yelling at air. Like right now. Writing. Yelling into the air. 

And to top it off I thought we were past the hump. Surgery is over. Jacob had endured the worst of the battle, but that is absolutely not the case.  Jacob now has 101.5 and all we do is sit. Waiting for the word from the hospital to come in. To just wake up there and pump him with poison from 8AM-12PM to then be put on 3F8 and watch him struggle as his body is attacked. When his body hasn’t even recovered from the last attack. And add fever. Don’t forget the fever he has.

And at some point you just want to yell at someone. 

Your doctors? NO you don’t yell at them.

No you do not.

You 

———————– (11:00PM)

I’m at the hospital now and picked up my laptop and found this page open. I think I was going to actually have a really nice moment with Doctors. How incredible they are. They are not to blame for this problem. They are the people working for a solution.

But it all feels trivial. Not the message, but the moment of pure fear as the night had not topped the bell curve, it was still getting worse. We are now at the hospital.

We got to a fever 103.5. It was not going down, but up and he was on tylenol, etc. We rushed to the hospital. What I remember most about it except the fact that I got him down from his bunk bed to go to the hospital as he cried by promising him a crepe (you can have a billion crepes! Whatever you want!), was Benno. How petrified Benno was. How I tried to console Benno but then had to run to Jacob as Steve was screaming let’s go.

We are here and the crepe arrived. He ate one bite. 

I ate the rest and am now working through pancakes smothered in nutella with syrup.

At least I’m not doing heroin right?

His fever is going down. Now at 102. He is responding to advil. And here we are. We may be sleeping over. We may not. We don’t know. We just sit. Even if we are sleeping over it will most likely be in the clinic, because there are no more beds. That is just the topper on the cake of hell. It’s not hell because t we are sleeping in the clinic, but that there are so many freaking kids with cancer that there are no beds. That is a lot of kids for a “rare” disease.

Pediatric cancers are “rare.” But rare is a relative term. Just like time. I guess anything regarding numbers relating to other numbers must be relative. Like Jews in my life. At one point they were “rare” growing up in Minnesota. Then I moved to New York in Middle School and they were everywhere. But by high school I knew the math, rare. But yet everywhere I went there they were. Masses of them. See countable things are relative just like cancer.

———10:00AM Next day

Just opened my computer again and read this never ending drama. We hit 105 last night. He responded to tylenol and so we let him sleep. We are starting late today.

I assumed that we would have a day of rest. Just fluids and antibiotics, rescue meds, but it is all moving forward. ALL of it. The chemo and then the 3F8. I really am at a lost of words. He hasn’t eaten and last night he threw up twice. He has fever. He is weak and now we torture him.

This is NOT easier. This is not getting better. Now I’m learning that because he is “older” he will have a harder time getting through immunotherapy. He could run a fever the entire time. A year of fevers. A year of scary nights of 105.

But I still haven’t taken taken the heroin.

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