Topic: Brain MRI-making me CRAZY!

Lisa - taking a side line here.  How do you make your lemonade?  Do you make a sugar syrup first?

Back to the real issue - I hope you get a call soon.  When I get as frustrated as you are, I either scream and yell or turn into a scared little girl.  Usually the latter.   As for the dog poop - hey, it just rinses off.  The sun's still shining! 

That's what I'm afraid of, Renee, but I'd rather have the news straight. I mean I'm Stage IV - have known it for 6 months, I can take it. Give me the #$!%ing report. I can read it, I can interpret it, I can deduce what the next step is - head and neck anatomy is my field for feks'sake. Each time I get put off by a 'messenger', I remind them that I had the original diagnosis of that blasted tumor in 30min in the ER. SOMEONE can read it to me!

Still I wait.

Lisa

sh*t...I swear, I think I'm typing the right thing then I read back and there is always a word f'd up!

I meant CRACK...crach just sounds dirty!!!

Go to the hospital and go to Medical Records and fill out a written request for the preliminary report.  They must give it to you if is available because the records belong to you.  I do this every time but usually I have them mailed to me but this is an emergency. 

Dr. Gr. called from LA!!!!

Mixed news - there is a shitload of swelling, as much as I had originally which is a LOT. He said that the function I have is remarkable, but unacceptable. Decadron dose needs to be upped several times, because I'm at risk for seizure ('substantial risk' he said) managed with Keppra which I have not taken since two days after the SRS radiation. Ompramzole needs to be added w/ the steroids. He's ordering a PET/MRI which he doesn't know if it can be done in SD or not. I told him I'm more than willing to travel. THis test is to determine whether it's necrosis or active tumor which is causing my edema. If he had to guess, he'd say it's a necrosis rx.- brain being a closed system and SRS sometimes causing this. We can't rule out active tumor, but he doesn't see more than the one lesion.

You can't be sure without the specialized test, and he said we'd follow that with more frequent MRIs. He'll order this ASAP - and we'll be in touch immediately following. I thanked him for this courtesy!

Thank you so much for bearing with me through this long, arduous day. I don't know what I'd have done - probably committed sepuku. I felt your love and concern from near and afar - support from outrage over happenstance to the soothing voice of reason and reassurance.

Lisa

So glad you received a report,Lisa. I've been thinking and following along here all day. It's heartening to hear the neurologist feels it's most likely known rads necrosis, and has a game plan for its treatment. He'll probably hustle along tomorrow to get you scheduled for the PET/MRI. Any way your sister might come for a few days, until your new med regimen takes effect and the swelling lessens some?

So very touched and humbled by your strength and attitude. A special prayer for you...

Tender 

Lisa--I've been wondering how you were doing. Glad that you finally got the information.  Keeping my fingers crossed that it is necrosis.

Sue

I'm so happy he called you!  Keeping fingers (and everything else!) crossed that it's necrosis... keep us posted.  Hang in there... we're all right there w/ you, every step of the way!

Oh wow, you must be exhausted from all this anxiety and lack of sleep.  I hope you can catch up on your rest while that pesky edema recedes.  I'm betting that is what it is as well.  And blech to your oncologist.  From all of us.

My crazy-making tension has dissipated into cautious optimism. I went right ahead and took Keppra, the stomach medicine, and a slug of decadron. That means I won't sleep tonight without aid, but I'm putting Xanax and/or Ativan doses right on my bedside table so I won't have to really wake up after 3 hours.

I felt Dr. Gr. felt he had dropped the ball somewhat, leaving me under the supervision of my onc., who is not the specialist that he is. The first words out of his mouth this evening were "How are you getting along?!?" I explained to him the April debacle and how bad I got before resorting to the decadron again. I had thought if I weaned carefully, slowly the worrisome symptoms would not recur. I felt that my onc had general supervision over this, but Dr. Gr. said "if I had heard you speak I would have gotten the MRI immediately" - and I'm doing relatively well today. It's my fault for not pestering my docs in LA, just following the prescribed scans, waiting waitng. He felt I should get treatment - more hands-on - with the PET/MRI and management of my meds. And he told me "Don't wait to call me - anytime." I will do that.

Pray for necrosis. And pray that I won't get HUGER with the decadron that's now required.

Lisa

Sleeep tonight.  Just sleeeeeeeeeppppppppp

Lisa, it was mixed news, but oh so much more optimistic than we were all thinking, I bet! It sounds like your doc has a bit of guilt and now you should be queen of his service. You own him!

Keeping you in my prayers for necrosis. Do not be surprised now that the adrenaline is out of your system that you just drop from exhaustion....sleep, rest, breathe...... 

Lisa,

Praying for necrosis and some sleep.  LOTSA sleep!

Lisa,

What a terrible ordeal you have been going through.  Sometimes you think these doctors just don't get it.  My prayers for better scan results and  healing.  We all feel your pain and frustration.  I also vote for Ambien.  Meima

Well. Dr. Gr. called from LA again. He asked how I was feeling and I said more optimistic. He asked if I were taking all my meds, including Keppra. Odd that he would include the anti-seizure medicine first. I assured him I was.Then he said he was waiting for the final report and my heart sank.

There's another tumor in my right temporal lobe - and it's not 5mm, not 8mm - but nearly 1-1/2 cent.

That's the further risk of seizure. He said he would encourage WBR radiation for this one so anther one doesn't pop up. I disagreed, saying this one is only a single lesion and I've got residual problems with edema as it is with the first treatment. He said I have I a point, there.

So, he's ordered the dedicated PET/CT for the brain MRI here in San Diego, and I will go up to to LA for the MRI, mask and treatment. My experience is that it's 3 weeks, but I told him time was of the essence.

phooey.

I've got all those calls I had to make last night and gave them the slightly optimistic news and give them the BAD news.

Yes, I asked for the written report.

Lisa