Friday, October 23, 2015

Midnight Musings from the Cancer Ward

These are the things I think about when I'm trying to fall asleep in Alex's hospital room:

1.  Alex (and our family) has built so much capacity in the past few months.

Alex now knows how to get to the bathroom while hooked up to an IV.  He can eat meals sitting in a hospital bed.  He tolerates being poked and prodded throughout the day (and sometimes the night).  I'm learning to sleep in a room where a stranger is watching over him all night (to make sure he doesn't rip out any lines).

2. It doesn't matter how old your child is; when they cry, you cry (even if it's only on the inside because you can't let them see you cry).

Alex's autism includes a major anxiety disorder.  Panic attacks can manifest themselves in various ways.  For Alex, one type of anxiety attack is a sudden onset of weeping.  It is the saddest thing you ever want to see.  The chin quivers.  The eyes well up.  Big, wet tears slide down his cheeks.  He hates crying, so he wipes and cries even more.  He had two such episodes last night while he was waiting through a delay in his chemo meds.  They gave him some medication to help him through it, and he finally fell asleep.  I just wanted to burst into tears myself, but I had to hold it together.  On the inside, I was a mess.

3.  Hospital time is a dimension all its own.

Day three of this hospital stay, and we're still trying to get his home medication schedule worked out.  His times don't match hospital "default" times, so he has yet to get his normal daily medication on time.  I have all his "home meds" in the room with me, bubble packed and verified by the hospital pharmacist, but I can't give him those.  I have given his medication schedule to the pharmacy tech and every nurse, but it still doesn't match in the system.

Also, every chemo med has been delivered late from the hospital pharmacy.  Consequently, instead of being released Friday afternoon, we won't get out until Saturday morning.  This hospital stay and chemo has been scheduled for three weeks.

4.  Cancer sucks, but cancer treatment is fascinating and filled with amazing people.

My family's medical knowledge coming into this phase of our lives was quite limited.  None of us chose medical fields for very good reason; this is not our area of strength.  That being said, we have learned, and are learning so much.  It is all fascinating.  I feel like an expert at autism, but Alex has always been physically healthy.  Now we have to learn his illness, his treatment, and how to make it work with his autism.  Occasionally we meet a professional who is slow to catch on to what we need, but that has been few and far between.  Our medical care has been fantastic.

5. Can really does affect the whole family.

Forgive us when we say "we" for everything.  Jessica texted me something the other day and it said "in case we aren't released from the hospital yet."  It isn't really conscious.  And I know full well what Alex is enduring if far more difficult than we can imagine.  But it is "we."  Our family has cancer.  Our life revolves around when "we" have treatments.

6.  Every single day I wish I could trade places with him. 

I so wish I could trade places with him.  I'm sitting at his bedside, grateful that he's asleep.  It isn't fair that he has to endure this on top of all the challenges he has already faced in his life.  And yes, I know all too well that life isn't fair.  But this just stinks.  I also know that in order to trade places with Alex, I'd have to get past his father, his sister, and his aunt who all feel the same way.


  1. Carrie, would it be possible to get the [head of something] to organize a planning meeting to specifically address these problems. It's ridiculous not to have things working any better than this--not to mention costly. (Maybe the insurance company's case management person would care about that extra night in the slammer, er, I mean hospital....?) The medical director of the hospital might be a place to start--with a hand-delivered, hand-written letter telling just what you described in that paragraph. Preventing problems is so much easier than trying to devise a solution after the train derails... If this is frustrating to read about, it's hell to live through. (I'm just lucky that Laura's hospitalizations were nearly so frequent....but the failure to plan, the late-appearing meds, etc. I can still get a headache remembering!) Sending you a cyber hug!

    1. Elaine, a manager came in this morning to make sure I was "highly satisfied with Alex's care." He was just doing his general rounds, checking on patients. I filled him in on the problems with the medications. He took notes and said he'd look into it. I'll give him some time to get back to me before I take the next step. Alex's oncologist was very upset when the nurse told him of the delay, so I imagine he'll talk with someone as well.

  2. My apologies for the double post. The iPad seems to be bewitched.