O.K., so I've had some time to cool off, yet am still po'd at one particular on call doc. I know, let it go and I will. One very valuable lesson learned: prior to any surgery, discuss the post surgical pain treatment regimen in detail with whoever is going to be administering the medications, and have plan b and plan c ready just in case the preferred plan a does not work. We found out the hard way that it is extremely important for everyone involved to know what exactly you are taking at home, particularly if you are taking high doses of narcotics on a regular basis and have built up tolerance to them. As a caregiver trying to convince medical personnel of this after the original plan( an epidural with dilaudid) has failed, is nearly impossible. Therefore make sure this is understood before it is needed. Sounds pretty simple, but with everything else going on getting ready for surgery we overlooked doing this. As a result, Lisa had to pay a very high price. On a more positive note, they have managed to get her pain down to about a level seven, which is still high, but coupled with being exhausted due to not sleeping at all last night, she is gently snoring away in her hospital bed in front of me. I am not leaving her side to make sure that they don't forget about giving her her meds on schedule, as this really tore me up to watch what she had to go through. I made a vow-never again will something like this happen. The squeaky wheel gets the grease and if I have to stand out in the hall and yell at the top of my lungs to get her what she needs, then so be it. She is one hell of a fighter, and is doing her part, so I will make sure everyone else does theirs. Thanks to everyone here on the MARF site for all the kind words and support. We love each and everyone of you and just know that you all make this journey a lot easier. Stay strong Mike

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Mike, Partner/Caregiver of Lisa, dx 3/06 peritoneal mesothelioma

Mike, you are one heck of a human being and caregiver. Lisa is in the best hands. I'm so sorry this part of the surgery did not go well. Its awful seeing someone we love suffer. You yell at whoever needs it! Sometimes we have to! I'll be praying for her, and try to take care of yourself too, you have to for HER. All the best.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.

Hi Mike,
I also was sad to read abt the ordeal of pain Lisa and you had to go through.... The ONE GOOD THING to come out of it is that you are able to warn NEWBIES and others who may have to undergo surgery how to be prepared for the postsurgical pain care.... Continuing to pray for both of you. I remember so well not wanting Marty to endure pain .... I'd have chosen it for myself rather than to watch him suffer.... EASIER TO SAY than to do, I know, but so difficult to watch a loved one suffer, that we all know.

Mike, remember to take care of yourself or you will be of very little help to Lisa...
Hugzzz. Lois

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Lois, Poolboy's mermaid
Marty was stage 3/4 - pleural meso 3/9/07
fought valiantly 27 months
gone to Heaven June 16, 2009

Mike....stay strong yourself for Lisa's sake as well as your own. I'm glad that you have cooled down a bit and I know from past experience how difficult it is to get just that right level of meds for pain control and comfort. That was the one single thing that was the most difficult is Hermann's care and I remember the arguing with the medical staff in the effort to get the right about of meds for comfort. As you said "the squeaky wheel" gets the best results. Go for it Mike! You are doing a great job for Lisa and you are the one who keeps on top of it. Keep strong.

Prayers are continuing on behave of both of you. Take the recovery one day at a time. Warmest hugs.

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Irene
widow of Hermann
dx 07/07
sarcomatoid pleural meso
dod 03/08

I think some people are afraid to mention pain meds to their drs, and some don't realize just how important a subject this is. You said it all Mike, and I hope your voice is as loud as my big guy's when it has to be. HUGS to LIsa, she is a hero.

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HUGS
bonnie
Peritoneal survivor 10 YEARS

It's been a battle, but we finally got the pain med situation straightened out. The worst part is that there are so many different Doc's involved and I had to convince each one of them at different times that the dosages required for her ARE that large, and not to try and change them radically. You'd think that they would talk to each other before they make asses out of themselves, huh? Anyway, Lisa is still here in the hospital, her white blood cell count took a hike upwards so they are not going to let her out of here until it comes down. Other than that she is doing really well and when we talked to Dr. Lowy on Thursday before he went out of town he was very happy with what he was able to do and how good she was recovering. He said that he removed every tumor that was visible, and took out the portion of her liver that had a tumor in it and that he didn't foresee any problems in the near future. Hopefully, if her white count responds well, we should get to go home sometime around Tuesday. Stay strong Mike

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Mike, Partner/Caregiver of Lisa, dx 3/06 peritoneal mesothelioma

So glad to hear she's hanging on-and that her doctor has such a good opinion of how the surgery went. I know you'll both be happy to get out of the hospital and back home for recovery. Thoughts and prayers to both Rose

Despite the bumps in the road, it does sound like Lisa's definately headed in the right direction. Sorry you're having trouble with those doc's. Why does it seem like we have to claw our way through everything these days just to get proper treatment? Makes me think of one of me & Dads many trips to the ER, and trying to get ANYWHERE with those doctors who were convinced they knew more than me, when they hadn't even come near anyone who had meso before. And remember, a big part of how well she is doing is because of your good care and oversight, Mike. I give you lots of credit. All the best to you both.
Diane

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Diane
Caregiver of Thomas (my Dad,82)
Pleural epithelial meso
dx 11/10
Our battle ended March 16, 2012. Together.