Lab results

[LexieCat]

I see my chart on my hospital's portal indicates the results are back for the PD-L1 test. But it says "see scanned report for details"--and, of course, the "scanned report" isn't up there. Says the results came in 8/19 and my doctor was out last week. So hopefully I'll hear from him today at least re that result. Nothing mentioned about the genetic testing. So I don't know if that's come back yet.

 

[Rower Michelle]

Bummer, until the biomarker results come in the PDL-1 alone is almost useless.  You could have an 80% PDL-1  and a biomarker or the reverse, for example my PDL-1 was zero.   Waiting sucks.    Not too much longer I hope.   

[LexieCat]

I'm getting used to waiting. It's a useful skill to develop when you're dealing with this crap. At least I shouldn't have to wait too long for the brain MRI results (scan tomorrow)--those are generally available the next day at the latest.

[Rower Michelle]

Do you have any benzodiazepines (Valium Or Xanax) for the brain MRI?  That’s a fairly long scan, up to 45 minutes depending on the tech and if there’s any minor movement detected.  The low dose benzo helps to keep me absolutely still so I’m out of there is about 30 minutes.  Needless to say your nose will itch about ten minutes into it (or at least it does for me).  Hope you’re allowed to pick your own music to cruise through it.  

[Sabacat]

SO frustrating to know the results are there and you can't see them ☹️  

I am usually super claustrophobic about MRI, but my most recent brain scan was fairly tolerable.  They put a "cage" over my face that has an angled mirror so that you can see out the end of the tube, plus they told me how many minutes each segment was.  By the time they pulled me out to add the dye, I knew there was only something like 8 or 12 minutes left, which made it more bearable.   The music I chose was great, but I could only hear it occasionally -- the banging drowned it out most of the time. 

[LexieCat]

26 minutes ago, Rower Michelle said:

Needless to say your nose will itch about ten minutes into it (or at least it does for me).  Hope you’re allowed to pick your own music to cruise through it.  

I SWEAR I thought you were gonna say "Hope you're allowed to pick your nose..." 🤣 

I don't think it will be a problem for me.

Yeah, I got great music last time, but the machine was too loud to enjoy it much.

[LouT]

Lexie,

The waiting just sux...Of course we have to get used to it, we have no choice, but it's always hard.  I hope you hear soon and get all the information you need.

Lou

[BridgetO]

Yep, it sux! Got my fingers crossed for you. Keep us informed.

Bridget

[LexieCat]

Annoying visit for brain MRI. The techs were fantastic as usual, but there was some kind of delay (apparently a problem with a patient earlier in the day) and when I came in, everybody at the front desk (one in particular) was having some kind of meltdown. First she kept insisting that I print my name on the sign-in sheet. I said I DID--it was very clearly printed. After repeating this back and forth, she emitted a heavy sigh and said, "We'll figure it out." Um, what's to figure out? It's plain as day--my writing wasn't sloppy. Then when I was called up to register, this person says they tried to call me to tell me it had to be rescheduled. I checked my phone, no VM, and I was home all day. She then said I could wait for an hour or so and they'd try to get me in. I said, fine, let me pick up my imaging discs and I'll run over to the doctor I'm seeing next week--it will take me only a few minutes, they are right down the road. She insisted that if I left, they would reschedule. So I said fine, I'll stay--I'm just gonna go get my discs. I got the discs and told the clerk I was just gonna put them in my car, I wasn't leaving, I was waiting. Put them in car and went back to wait. After an hour, I went to check to see if they had any idea how much longer it would be. This same woman then said, but you left. I said NO, I just put these in the CAR and didn't go anywhere--I'd told them I'd be right back. She looked thoroughly disgusted and said she'd try to find someone in charge. The tech then came out, at which point I told the woman who'd been giving me grief that she didn't have to treat me this way--she was acting like I was putting her out. She denied it, but then god bless the tech, she took me right back and they had me on the table in five minutes.

It went fine--they said I did great. No itching (or nose-picking) required.

Oh, and while I was waiting, my oncologist's office called and scheduled me for a visit next Tuesday--presumably the results of the molecular testing are back.

To top it all off, I tried to drop off the discs at the other doctor's office when I was done. It was 4 pm and the office was now closed. Whatever, I sent the scheduler there an email to find out when I can drop them off. 

So a frustrating experience, but at least I got the scan done and that part went well. 

I always get surveys after imaging--I'll have a few comments this time!

[Sabacat]

OMG, what a cluster****!  I’m afraid I would have been much nastier!!!

[Babs]

Ugh!  It’s so unbelievable that they treat patients like that!!  I would definitely give it to them in their survey.  That should not go unnoticed!  Glad you got it done though.😀
 

Babs

[LouT]

Lexie

 Normally you have to pay people to be that rude and inept.  God only knows what happened before you got there but I can guess that it wasn’t good for that patient.  I’m glad you stood your ground and got the test done.  Hopefully the rest of the process will go smoother.  
Lou
 

[LexieCat]

I'm not sure what bug got up her butt, but I've NEVER been treated like that there--normally all of the office staff are extraordinarily pleasant and helpful. I wish I'd gotten her name but I was just glad to get in at that point. If that had been my first visit, I'd probably be tempted to go elsewhere. 

Oh, and the tech (maybe the same one I had last time--I'm lousy with names and it's tough to recognize people when they're masked up) again hit my vein on the very first try and I barely felt it. They also apologized for the wait, which I appreciated. It wasn't the wait that upset me, it was the way I was spoken to.

[Tom Galli]

Lexi,

I am amazed that you calmly navigated the shark infested reception desk sea of perpetual ineptitude. I would have been far less accommodating. 

Yes staff work in the COVID era is hard but one should not make it harder by snapping at patients. Glad the tech intervened. 

One more point, yours is a time sensitive linear process. The receptionist was a deliberate disrupter. I hope you don’t hold back on the post visit survey. Someone needs to find a new line of work. 

Stay the course. 

Tom

[LexieCat]

1 hour ago, Sabacat said:

OMG, what a cluster****!

I used to work with cops on a regular basis. Their term is "Charlie Foxtrot." 

[Rower Michelle]

You're far more patient than I am.  I've been writing obnoxious things on all those mandatory forms for two years now, just to see if those jokers even read them  (and I mean all kinds of bizarre things....).  My doctor picked up on it immediately and then became a running joke in the clinic.  

When I went for my scans last go round I asked for a translator that "speaks Jersey", for the first time in two years the registration desk finally asked me, "do they really use different words in New Jersey".    YUP- I asked where she would buy pie and she said the bakery.  BUZZ-wrong answer.... 

Definitely fill out the Press-Ganey survey and give them a real piece of feedback, next time, see how far "Minnie Mouse" will go on those forms..... if they make me put a time in it's usually "Margaritaville".    

Totally sucky experience for sure, but unfortunately won't be the last one, so time to get creative and do a little messing back for your own peace of mind.  Power of the Pen!!!!

 

[Sabacat]

1 hour ago, LexieCat said:

I used to work with cops on a regular basis. Their term is "Charlie Foxtrot." 

I’ll have to remember that one!! 😁👍

[LouT]

You know...in a perfect world we could go to all our appointments with Tom on our right side and Michelle on our left...then let some incompetent give us a hard time.  For my part I'd be willing to pay to see that...

Lou

[DebM]

Wow, it's bad enough that you have to go for an MRI at all, but to be treated so poorly is terrible.

Kudos to you for being so nice, I'm not sure that I would have been that patient! 

My experience has been that most of the people that you deal with in medicine are kind, except if they work at the front desk.  That front desk seems to be where the mean people live lol! 

[Lin wilki]

So sorry it was such a disaster!  Just because someone is having a bad day, that doesn’t give them the right to treat you like sh...      Will be looking for your follow up after you see your doc

Thinking happy thoughts!!!

[Tom Galli]

"Whisky Tango Foxtrot Oscar." "Romeo, Charlie Foxtrot!"