Thursday, February 9, 2012

Chemo brain...

So, last week we listed our king (solid pine canopy) bed on KSL.  We were asking $475 which was a good deal because it included the mattress set (in great shape).  Anyway, a guy comes to buy it and asks if we are set on the price.  Paul asked him if he had cash.  He said yes.  Paul said, "Okay, how about $350?"  My mouth dropped open.  When he looked at me, he knew that he had said something wrong.  The guy even looked at him funny and said sure!  Then it hit Paul, he said, "Weren't we asking $375?"  Both the guy and I told him that we had listed it for $475. Ironically, Paul is the one that told me to list it for that price.  Paul asked the guy if he knew what chemo brain was.  They guy just shook his head no.  In fact, he didn't even care to know what chemo brain is. 

In all honesty, I was a little bugged that the guy didn't show more compassion.  Especially since we told him we were using the money from the bed to pay for medical bills.  He was just pleased that he had gotten a GREAT deal!  I guess I could have said, sorry we can't sell it for that...but, Paul was so embarrassed and he felt really bad.  I told Paul it was okay... I wasn't mad...Who knows, maybe the guy had a greater need than us.  Needless to say, I still love my Paul!  I just need to make sure I handle all the "important" things!

On Monday, the Home Health nurse came out to change Paul's needle and chemo bag. What a fiasco!  Paul called and talked to the pharmacist that morning to make sure everything was set up.  The pharmacist told him he had Paul's order there and was going to get it completed that morning.  He gave Paul the number to call the nurses to make sure we were on their rotation.  He called and had to leave a voicemail.  They called us back and told me that they would be out around 6:30.

We got a call from the nurse about 4:30 letting us know she was planning on coming.  Paul asked her about the chemo drug because it had not arrived yet.  She explained that someone had let the ball drop and it wasn't ready.  The story about the delay had something to do with the pharmacist not having the information he needed to fill the prescription.  He sure seemed to know all about it when Paul talked to him that morning.  Anyway, she told them they needed to expedite it, because they weren't planning on sending it until their 6:30 p.m. run.  She told them Paul's chemo was going to run out at 6:30 and they needed to get here by then...They told her they would get it here by then. 

Well, needless to say, she got here at 6:15 and there was no drug.  She called them and they told her they had sent it out at 6:30.  So, we waited...the girl arrived at about 7:15.  She brings in the box...only it wasn't Paul's chemo drugs.  She goes back out to her car and discovers that she did not bring his box of chemo with her.  She had grabbed the wrong box to bring.  They placed another phone call.  They said they would get it out as soon as possible...

In the meantime, our nurse had disconnected Paul from his chemo bag and had replaced his needle in the port.  She tried to get the IV bag disconnected from the pump, but it was stuck!  Paul needs a pump to infuse his drugs, so she called and asked for them to send us a new pump.  They told her it would take a couple of hours. WHAT?  She decided to mess with the other pump while we were waiting.  She took a screwdriver and successfully knocked the tubing (cassette) out without causing damage to the pump. 

Now we were waiting for the chemo drug and a new pump.  Amazingly, we got the chemo and new pump at about 8:15.  The nurse hooked him up to the new bag of chemo, inserted it into the bag (looks like a fanny pack) and started the pump.  Within a few minutes the pump started beeping.  She kept messing with it. It said that there was a problem with the tubing.  After examining it, she thought the problem was because of a kink.  So she fixed the kink and restarted the pump.  Within a couple of minutes the beeping started again.  She looked at it again and it had the same message.  She tried the same approach again and the pump started working again.  Then after a couple of minutes the beeping started again...

After looking at the IV bag, we figured that it must be because the attachment on the chemo bag was too large for this kind of holding bag (fanny pack).  It appeared to get kinked in the bag.  The previous IV bag had a lot smaller attachment and a shorter length of tubing.  So, the nurse took some scissors and cut the IV bag and pump out of the holding bag.  She had to cut it out because we couldn't get it out any other way without totally disconnecting Paul from the IV.  So, Paul had to say good-bye to his nice small bag to carry around his IV bag.

We placed the IV bag and pump in a big back pack that we had used for Paul when he was getting his TPN.  Ironically, within a few minutes the pump started to beep!  The nurse was very frustrated at this point, so she took the IV bag out of this pump and put it back in the old pump.  It worked just fine in the old pump.  The only problem is that you have to use a screwdriver to get the bag out of the pump.  We will worry about that next Monday. 

Anyway, by the time we were done it was 9:00.  The nurse had been at our house for two and a half hours just to change out a chemo bag! 

Paul is struggling to keep on weight.  Most foods get stuck in his throat.  We talked to his oncologist and gastroenterologist on Tuesday about the situation.  The game plan now is to bump his next chemo round back by a week and attempt to get his esophagus scoped (and dilated if needed).  He will have his blood tested on Feb. 21st.  If his blood looks acceptable, they will do the endoscopy on Feb. 22nd.  He will start his second round of chemo on Feb. 27th. 

Paul will finish his first round of chemotherapy on Feb. 13th.  He is still on chemo 24/7.  It will be nice to have a two week break without any chemo (normally it will only be a week).

Paul is very tired!  He got his B12 shot yesterday so maybe that will help a little...  He gets some nausea, but for the most part can keep it under control with his meds.  We put some peppermint oil on his wrist for him to smell and it really helps with the nausea!

Paul is still walking daily and trying to remain positive.  We know that things could always be worse!

This is NOT a picture of Paul's bags for carrying his IV, but his look similar.  I think his larger bag is actually a little bigger than the one shown here.  He enjoyed carrying the smaller one.  The plan is to make sure he gets a new small one again with the next round of chemo.

This is the kind of pump Paul uses on his IV bag.

1 comment:

  1. That is such a bummer about the bed...keep your chin up! We are praying for your whole family.