Now, even more confused ... and in tears....

[Captain Deb]

Jeez, guys, I'm really glad no one used a spork to get at MY tumor! I believe they scooped it out with a melon-baller instead.

Captain Deb

[Larry]

They used a jack hammer and shovel on me!

[ppearl214]

My blast from Capt'n Kirk's phaser gun (hopefully) worked for me!


UPDATE:

Ok, 2 weeks post treatment, last taper stage of Decacrap.  2mg/every other day (Monday, then Wed then THAT'S IT!  YAY! Maybe I'll get to sleep now!).  Headaches are coming on and supplimenting with Ibuprofen 3x/day to help keep swelling down.  Dizziness and balance issues more prevelent at night.  Did drive at night for the first time last night (Thanks Capt'n Deb for helping to steer the ship down the waters with me!).  Have been experiencing a "disconnect" feeling, especially at night.  Facial numbness intermittent, crickets still chirping in ears, mostly at night but definately make their appearance known during the day as well.... but overall, still hanging tough in my usual Phyl fashion.

Am curious if any other radio (or surgical) Posties have experienced the "disconnect" feeling (almost like taking cold meds during a cold).... thoughts? Suggestions?

Hoping you all are having a good weekend. BTW, 5 days until Cheeky bloke! Hey Sue, I need help cleaning my house...
xoox
Phyl

[Battyp]

I"m thinking Cheeky Bloke will over look any dirt!  But if sue shows up make sure you point her my way when she's done at your place 

Yes, I can relate to the disconect feeling.  It's like my brain and my body don't communicate anymore sort of a surrreal feeling.  Maybe it's just wishful thinking this isn't really my life right now  LOL

I didn't know Capt Deb could help me drive at night...Geesh and here I've been rushing to get home by dark or having my 15 year old (who's learning to drive) drive me around! 

[jrhafer]

Hi Phyl,

If I may jump in here, I have just read all of your posts and must say you must be proud of yourself for all you have gone through.  Now that you have gone the CK route, just tell yourself that this was the right decision and go forward with it.  Do not look back and move on.  Things will only get better!

I am 9 months post CK and I went throgh all of the decision makng issues you did.  I was on a "watch-and-wait" for my then 3mm AN since 2002.  I met with doctors who wanted to do mid-fossa surgery and who bashed any form of radiation, went to Mayo Clinic in Rochester and discussed GK, went to John Hopkins and to see about FSR there.  After much research, for I am VERY analytical, I opted for CK mainly because I wented the best chances for hearing preservation, and felt it was the most "high-tech".  By the time I had my CK treatments in 2005, my AN had grown to 5.5mm.

After 9 months, my hearing is still unchanged, maybe a slight high frequency loss but, still my last hearing test last month still shows 100% word recognition, and my hearing is still considered normal.  My only symtoms now are tinnitus, which I have had since 1989.  And my 6 month post CK MRI showed no increase in size.

So, tell yourself you made the right decision, because you did, feel good about it.  Life for you will only get better now.

BTW, I live in Minnesota but I have a sister who lives in Boston, (Quincy). I go there often.  Nice city and top notch medical facilities!

Regards,
John H.

[Raydean]

Hi Phyl,

You've been in my thoughts alot as you have move forward on your AN journey.  I've been wondering how things are going with the Chiari?  I think I might have shared (but then again maybe not) that my youngest daughter has Chiari type 1. She's very symptomatic,  but holding her own.
Lots and lots of headaches. Anything in particular working for you with the Chiari, or is it just on the back burner?

Hugs to you
Raydean

[Sue]

 

Hey Sue, I need help cleaning my house...
xoox
Phyl

Sorry Phyl, that energy spike is long gone!!  I'll be done with decacrap Tuesday night. I don't know how long the effects last, but I'd sure like a good nights sleep also.  Three naps don't cut it.  I'm tired out from no sleep, I guess.  So I was coming up with my malpractice lawsuit plan early this morning (see Malpractic thread), then afterward maybe we can keel haul him on Capt. Deb's boat. Avast, Dr., I'm coming after ye! 

[Battyp]

Sue about a week after the decacrap is out of your system be prepared for the crash and burn  lol  acutally I took it a lot longer so not sure if you'll have that or not.  All I wanted to do was sleep.  I think I slept constantly for 2 weeks after I came off that stuff ...geesh..so I guess you're not coming to clean my house after phyl's

[Gennysmom]

Sue...glad you're hanging in there.  It got to 70 in the Seattle area today, hope it was as nice down south of me for you!   I need some Decadron induced wench to clean my house too.  Put me on the list someone.

Actually, I'm watching with much interest with this Decadron thing as I'll have my fair shake at it soon.  I now have much empathy for all the poor birds I gave Dexamethazone shots to at the rehab center.

[gregorywannabe]

Thanks everyone for your responses. I guess this may have come up before but currently in OZ there
are no GK or CK machines (please correct me if I am wrong on this). The Federal Govt committees
are still looking into it (don't hold your breath!).

Locally in Perth we have "traditional" headframe type SRS:

"Currently at the Radiation Oncology Department at Sir Charles Gairdner Hospital we have three
megavoltage linear accelerators each treating about 55 patients per day from 7:30am until 6:00pm.
All machines can deliver 6MV energy X-rays and one can deliver a more penetrating 18MV X-rays
which is more suitable for deep-seated areas e.g. within the pelvic area. Two of the machines can
also deliver five different energies of electrons. Electrons are used for more superficial (closer to the
surface) tumours such as skin cancers. One can be set-up to deliver X-rays to very small precise
volumes in the head region. This is called stereotactic radiosurgery/therapy."

Won't know anymore I guess (such as how many ANs they've treated and post treatment stats)
until I actually get a referral to go see them.

Hmmm, looks like now I need to checkout post treatment drugs as well with this decadron talk!
 

[Mark]

Greg,

I know your fellow Aussie, Larry, has looked into the radiosurgery option down under so he can answer more accurately than me, but I'm pretty sure they do have GK. At this point there is not a CK placed anywhere in Australia to my knowledge but it would be beneficial if the government looked into that for the benefits it gives for full body treatment as opposed to just cranial tumors.

Mark

[ppearl214]

Hi John! Oh, thank you so very much for the encouraging words! It's those that have also had CK done that are on the path of wellness a few steps ahead of me that help keep me going!  Know that I am very much at peace with my decision and know, for me, it was the best thing I could do.  Hearing success stories like your's really helps me keep my chin up as I deal with the immediate (hopefully temp) issues at hand. I thank you so much for sharing this with me/us.

Hey Raydean! OMG, the Chiari. I had not forgotten about your daughter at all and please tell her that her Chiari sister in crime sends hugs and hellos.  I can tell you that, as of today, I have a difficult time telling what is bringing on the headaches.  Getting the headaches in the occipital area, so could be post-CK swelling or Chiari. I know my legs are a mess right now and need my cane more often than not.  The last MRI still show the Chiari as being mild but there, no syrinx (or however you spell it), so I'll take that! Next MRI is May 8 for post-CK but they also take a peek at the Chiari as well to make sure nothing has gotten worse. Keeping fingers crossed it stays that way.

Sue... sleep. Gawd, we both need sleep!

Hi Greg and welcome!  I agree with Mark about Larry being a terrific Oz reference as he has researched much in teh area.  All this talk of decadron, etc... please remember it's temporary. A couple to few weeks. Trust me, in a month from now, I'll look back and say "gawd, I actually carried on about it!" when it passed by in no time.

Sending you all huggles... and btw, Cheeky Bloke is cleaning the fridge when he arrives!  He does a great job of it, but I have to say, out of this recent AN journey, he really is the Rx that this AN patient needs right now.

oxox to you all!
Phyllis

[Kilroy1976]

Am curious if any other radio (or surgical) Posties have experienced the "disconnect" feeling (almost like taking cold meds during a cold).... thoughts? Suggestions?
Phyl

I wouldn't be surprised at all if the "disconnect" was from the decadron. When I was on it, I compared it to the feeling you get when you take way too much DXM (cold medication). Nothing else even came close to describing it... Be sure to let us know if you reconnect after you're off the junk for a while.

[wind6]

Hi Everyone, I have that disconnected feeling too. Its mostly when I walk or when I am tired. It does feel very surreal. Hope you all are doing well. Luvs, Sherry

[ppearl214]

oh, I'm off the junk this Wed and cannot wait!!!!!!!!!!!!!!!!

Sherry, agreed!  When I'm tired is when I really notice it... especially at night, walking the dog (10pm or later).  VERY weird feeling....