Thursday, March 17, 2011

What to say about yesterday?  It was a pain in the ass for many reasons.

I was scheduled to see the doc, and I had a list of things I needed addressed.  First thing, the heartburn.  No problem, they have drugs for that.  My white counts are still on the low side, low enough that there was much hemming and hawing about what to do.  I can get a shot.  The doc can lower the chemo dose.  I said I could try the shot. 

Then I inquired about how we can make the whole disconnection of the pump easier and more convenient.  I said for all of us, but mainly meant ME.  I repeated that I think it's ridiculous that the chemo infusion people can't just give me the saline and heperin syringes.  They keep that stuff by the freaking boxful and it's just laying around in drawers all over the place.  I told the doc that the pharmacy down in the lobby doesn't take our insurance, so I had to shell out nearly $20 for SALINE and HEPERIN.  The Physician's Assistent is convinced that there is NO WAY the chemo infusion people are just going to give me the supplies I need to disconnect at home because of liability, blah blah blah, oh and heperin, did you know, is dangerous for children.

Okay, this is where I started to get really frustrated.  The way we treat the chemo pump and the stuff that goes with it is absolutely NOT a danger to our children, and I get offended when that is implied.  Eric and I are not stupid, we've been on the chemo train before.  We put all that shit away, and the kids know not to touch it anyway. 

So I of course started to cry because why does this have to be so complicated.

Then the doc said, "Well, you'd have to come in for the shot on Friday anyway."

WHAT???  Every damn time I turn around, the chemo center is trying to get me to go there.  I don't want to fucking go there.  I really don't.  It's such a time suck, and I have other stuff to do that is not cancer.  I want to go once a week.  That is IT.

At that point, I was pretty much done.  I was all, "Sure, sure, whatever."  The doc said some junk about how he could write a note to Eric's work so Eric could take more time off.  Eric's job is not the problem, of course, they're very flexible.  The doc said some more junk about how it will "only take an hour."  Yeah, right.  I'll bet anyone two or three of my stupid cancer tumors that it will NEVER take an hour.  It takes almost 20 minutes to drive to the center from my house. 

So yeah, done.  We set up my next appt with the doc and I went down to the chemo infusion place.

Chemo infusion was mostly uneventful.  On my "little chemo" weeks, I still get all the pre-meds, which means a benedryl nap for me.  When I woke up from my benedryl snooze, I expected to be just about done because the whole thing is only supposed to take about two hours (or so I was told).  The Erbitux hadn't arrived from the pharmacy.  I took a wander to the bathroom, did some staring into space, listened to my Ipod.  Erbitux still not there.  I took another wander (I wonder if the nurses suspect that I wander more when I get bored?  Chemo does make me pee a lot though).  Erbitux arrived finally.  Infused.  Oh yeah, we have to watch you for an HOUR. 

Sigh.  I finally left at about 6pm.

Anybody else tired of this yet?  Because I am.

I understand that waiting around for the pharmacy isn't going to be a regular thing.  At least, I hope not.  Once everyone is convinced I'm not going to keel over from an Erbitux reaction, maybe they can stop the hour waiting period (I should remember to ask about that).

Eric and the kids were waiting.  All the way home, Eric and I vented about how stupid the cancer center is and how stupid everything is and what is the big fucking deal about saline and heperin?  (we didn't drop the F bomb in the car, we have kids, yo)  The conversation all evening ranged from "We're going to find another cancer center, dammit!" to "Well, it's still better than anything we've ever done before, scheduling wise, and we do have many people who will help with the kids and maybe even rides to the center on the Friday disconnect."

Where we stand right now?  I don't know.  Is it worth continuing to pitch a fit?  We still have the option of speaking to the head nurse at the chemo infusion place and pleading our case.  But if I have to get a white blood count shot anyway, we might as well cave.  I don't feel that I'm asking the world here.  I'm trying to make this all as easy as I can for my family, for my kids.  It's not their fault that their mom has cancer.  While I really appreciate ALL help, past, present, and future, I'm not sure shuffling the kids around again is the best thing for them.  But maybe I'm being overprotective.  We'll see.

So yeah.  That's the deal.  Next week is Big Chemo, and I'm going to do my best to forget about it until sometime next Tuesday.


  1. u and ur family is in my prayers, all happy thoughts. N love love love :)

  2. I'm so, so sorry. What a pain in the ass. I know you don't want to shuffle kids around, but if you need to, they are happy here and so are we. :-) Just let us get the fever out of our house and then we'll be good to go. Poor Liam has had a temp in the 103's since yesterday. We don't want to spread germs to you guys.

  3. You have got to be f-ing kidding me....hang in there. I'm glad you have such a strong will and a great family (Eric, Reese, and Eli). I'm thinking about you and praying things will be easier for you this coming week. Oh, and yeah I sure had my share of doctors and nurses dealing with my mom's anuerism that totally thought we were a bunch of idiots. No wonder why health care costs so much!

  4. You really aren't asking for much at all. In the UK they are happy to teach people to flush their lines in the "non-chemo" week, not sure they'd let us disconnect our own pumps though. I am taking 5 shots of GCSF (for white cells) every chemo cycle which they give me from the pharmacy with my anti sickness drugs. I give myself the jabs and have a sharps bin. I'm guessing if you're having just the one shot it's the expensive Neulasta not neupogen. Still - could you ask if they will let you take the shot home and do it yourself?

    PS. I hate chemo.