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Another that guy moment

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

So today we started the weekly chemo.  I thought we were going to do one day a week 3 weeks on one off, but it looks like we have four weeks in a row.  Anyway we received a phone call from the pharmacy on Saturday evening that we had a prescription ready.  We thought it was dexamethasone since we knew we were getting a script for that to start off our chemo.  He had to take 10 4 mg pills.  Of course we crushed those and put the through the PEG.  Well when I got to the pharmacy I received 44 tablets of Cyclophasphamide.  The label said to take 11 each Monday.  Well here is the problem.  These are chemotherapy agents.  How am I going to crush them safely and why would I administer chemotherapy agents.  I don't have the proper attire for that.  The dosage was 550 mg, which seemed high for a low dose therapy since last time he took 750 mg once in a month and now he will be taking 550 four times this month?  So I get to the chemo infusion and the nurse informs us we were suppose to take that at home.  They called up pharmacy and I was informed that I should not be crushing them as that could cause me problems.  They suggested he swallow them and he looked at them like they were crazy and said I can't swallow 11 of those horse pills.  They all looked quizzically and he said I get my food from my PEG.  Then we get the standard "Oh your that guy".  They had never had this problem before.  So the pharmacy took the pills and they came back with a soluable solution for his PEG.  I think the plan is next week to administer it via IV.  Also with the drug he took he needs an extra liter of water the next two days.  Well drinking it or putting it in his PEG isn't a good idea since he gets intense nausea.  So they gave him a bag of fluid there and then I came home and hooked him up to his daily liter of fluid.  So our 45 minute chemo turned into 3.5 hours.  On the bright side it seemed like it went pretty quickly.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Continue to be in my prayers. I hope this next round of Chemo is uneventful for both of you. I am still praying hard daily for the miracle that David needs.
In the mean time try and remember to take time for you. Easier said than done I know but do try.
With love and hugs,
Billie

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

How much more do you have to go through. I really feel for you. You and David have definately earned your wings and halo's. My prayers and thoughts continue everyday.

God bless and God speed

Sue

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I think that they all need a head slap....

What idiots, obviously nobody is communicating leaving you guys stuck in the middle... I'd talk to my MD's and have them square this away for the future, that's just rediculous to not know patients needs better than that.

Thoughts and Prayers,

John

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

Thank gawd David has you to advocate for him.  I can't imagine being weak, sick, nauseated, and having to explain again...that I have to take things thru my PEG tube.  It's also unbelievable that the pharmacy instructed a layperson to handle and crush chemotherapy tabs!  Usually pharms are more "up" on things than Dr.'s, even....I'm glad this got all straightened out.

p

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Vivian,

wow!  Amazing.. I often think things I won't say to the doctors.. Someone prescribed this, right? I am thinking.. Is this how you want someone to treat your family member?

good thing David has you!!! You are awesome at care taking! And I get it, wouldn't it be nice if you didn't have to be the critical thinker all the time?

kudos for you in your wonderful advocating skills.

Kari

ditto1
Posts: 630
Joined: Mar 2012

Ya your that guy who to us is one of the bravest men I have ever had the pleasure to know, Oh your that guy who has been blessed with a most precious gift in Vivian as your wife and care taker and ya Oh your that guy that inspires all of us on this site each and every day.  So I take honor in knowing That guy.  Diane and I truly pray  you see some light each day amoung all this caos.  You both deserve it and proudly wear the title of Your that Guy David because you sure are to us

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Vivian

Ditto what Ditto said.....

you and David are two of the strongest people I have cyber-met.

Just keep doing what you do Vivian and stay strong.

 

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I know what it is. You & David forgot to remove those "I'M STUPID" signs from your foreheads. I get that a lot lately from doctors and staff. I try to be precise with my responses to each specalist's questions. Even though each problem associates with the next to create the big picture, each specialist has tunnel vision. I called the cardio's office today to schedule the follow up. She asked me what had been done to Ron in the hospital. I told her about the lung biopsy, med changes, and oxygen. As for specifics, I was never there. She proceeded to tell me that they didn't care about all that, just wanted to know what was done for his heart. I simply told her that her boss was the one who took care of him in the hospital, so maybe there's a possibility he could answer that one. My fuse is getting shorter!

Don't let anyone be condescending to you guys. That really pi$$es me off.

I'm glad they finally took time to figure it out and change the meds. If I remember correctly, they went to school for this. LOL

Luv,

Wolfen

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Thanks for everyone's comments. I read them to David and he was touched. He says he wants to get on here and thank everyone himself. He knows my main source of support is here and he is very thankful I found you.  I feel very blessed as well.  David is doing pretty well tonight despite a morning of chemo.  He actually ate as many calories by mouth as by PEG.  Not a lot of calories but better than I expected. 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Vivian,

A part of me seethed at reading your post. The insensitivity and lack of compassion would have tripped a fuse had that been me. I personally don't deal well with that kind of attitude. Of course I don't know how much fight I would have in me that far into treatments ;) I'm glad to see you're there to pick up the big stick and take care of business. 

"T"

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