Horatio update: Post radiation results in

[Lynn49]

Oh, good grief, Tara.....this just keeps snowballing for you! I'm so sorry you're having to deal with more side-effects! I have tinnitus, but thankfully that although it's pretty much a constant, it rarely means that I have to turn up the volume. Sometimes it's quite loud,..my Mom also had this, so maybe it's just hereditary? Anyway, I just think of it as my constant companion...whatcha gonna do, right? I hope yours subsides, Hon. And sure! Vomiting up meds absolutely means they weren't helping you. Let's hope time with full medication helps things get back to the way they should be at this time.

Bless your heart, Tara....big hugs!

[Horndogg]

They do look like great fun MQ.

So I had a hearing test Friday as I've been having a lot of issues with my right ear since my radiation treatments and as suspected I've lost some hearing in that ear. I knew it was a possible side effect of brain radiation and the tinnitus hit about 2 weeks into it so I wasn't too surprised, especially since the TV now has to be on like volume 20 and I'm really easily mixing words up. My comprehension is worse as well. I had a hearing test done last Feb to compare this one with so that showed my high frequency was off more as well which effects the comprehension. Neato, eh? lol

I don't need hearing aids or anything which is good, it just needs to be observed every 3-6 months to see if it's declining. Unfortunately I'm screwed on the tinnitus and just have to live with it, which sucks because it's so loud and a constant 24/7. I don't know if I'm having seizures again or not. Grrrr. Since falling ill I've had weird smells as like my previous seizures manifested (auras) but they aren't a familiar smell like my previous ones. But the patterns are the same and the smells remain the same each time now. I'm keeping a journal to show my neurologist in a few weeks to see what he says. Only thing I can think of is maybe since I was vomiting up my meds for a solid 5 weeks that the meds need to build up in my system again? Because that's when these "episodes" started.

Other than that though I'm feeling ok. lol

Thinking of you tonight Tara! God Bless you my dear!

[TaraF]

Actually Lynn I've tried to ignore the tinnitus as much as possible it's just when the left and right ear are ringing at different frequencies at the same time that I notice it and it becomes unbearable. But really, what are you going to do? Especially since my ear drums are swollen I can't even wear earbuds and listen to music. Meh. I just have to deal with the new normal I guess, but I am thinking of a white noise machine for sleeping at night.

Thank you Horndogg. I hope you're doing well.

I had one of the scariest experiences tonight. I came home and decided that I wanted spanikopita for dinner. So I popped some in the oven, turned the timer on the oven and looked at the clock. Then I started straightening up the living room which backs on to the kitchen. I was literally 20-25 feet from the oven the whole time behind the wall (galley kitchen in an apartment) and I didn't hear the timer go off. My mom and husband starting smelling something. I smelled nothing and had totally forgot that I even put anything in the oven. Talk about a scary feeling. I know my hearing has diminished and I know my brain isn't up to par, but the smelling? I'm not sure what that's about, could simply be a fluke. However, I've decided that if I'm home alone that I'm not going to use the oven. Just incase.

[walkonby]

did the stuff get totally burnt black Tara or was it salvaged? That was a close call for you, but I agree about ditching the oven baking for now if you are there alone, just not worth the risk of a fire. Take care!!

[avoncallingu]

Hi Tara! You DO face challenging side effects! But then you reach down and "take it on!" Roll on March! A white-noise machine might just be the thing.

[TaraF]

Wob the bottom was totally blackened and the top a deep brown, not enough to set the fire alarm off but certainly not salvageable. I should have smelled it though. I think I'll note that in my book and bring it up to my neurologist when I see him, could be a connection to everything else. Who knows.

Oh avon you either laugh or cry. And there are days I cry! But I just quickly realize that the motto "adapt and overcome" needed to become my way of life after surgery and beyond because once you tinker with your brain things aren't the same. And since radiation things really aren't the same. I won't try to kid myself in thinking they are, but it does suck when I discover I "can't" do something like I use to or remember things as I once did,etc.

[TaraF]

The weekend hasn't been good to me. Boo-Urns. It started Saturday night with really bad vertigo. I just moved to the edge of the couch and everything was spinning and then the nausea kicked in. It worsened into Sunday and today I'm using my cane because I fell a few times. Oops. And the vomiting started this morning too. Joy oh joy. I started back on the dexamethasone as per instructions should all this crap start up again, and I called my Oncology Nurse. Just waiting on her to get back to me.

My MRI isn't scehdualed for 6 weeks, so I'm hoping they either bring me in early or just leave me on the dex for the time being, because it seems to do the trick.

[toban]

Tara, I'm sorry you are enduring this. You will get through this- I'm praying for you and sending positive thoughts.

[TaraF]

Thank you toban. I am feeling better since starting the dex. That wonderful little pill! My nurse finally connected with me (we always miss each other) and said that she will see if my Oncologist wants to bring me in early for an MRI since my symptoms reappeared after having only been off of the meds for 2 weeks and since my seizures have remained a daily occurrence. So I play the waiting game to hear back from her on that. But for now I'm grateful the medication is working.

[Skippy]

Sorry for the difficulties you are going through. Continued prayer offered for you&yours. One day at a time!

[TaraF]

Thank you Skippy.

I apparently can not behave long enough to satisfy my Doctors. I received a phone call today and my Oncologist ordered an MRI for this Saturday. That moves me up 4 weeks from my scheduled MRI and it's due to the fact of the recurring symptoms I've been having. I have to rush out tomorrow and get some blood work done in hopes they get the results by Friday because they can't do the MRI unless they get the results either. But today is a bust because of the weather. My husbands Dr even called first thing this morning to cancel his appointment lol.

Fingers crossed the MRI ONLY shows brain swelling and nothing else. The prospect of having to find a different cancer centre that deals with neuro-oncology and IV chemotherapy in Southern Ontario and not just oral chemotherapy is an overwhelming thought. Not to mention I don't want to have to go through that or further brain radiation.

Due to my husbands Psychiatrist cancelling his appointment today because of weather and needing to reschedule for tomorrow, I had to cancel my Neurology appointment in Hamilton tomorrow. *sighs* My husband needs to get his intra muscular medication injection whereas I'm already on my anti-seizure medication (what I see my neurologist for). Do I need to beat down the ground hog? Anyone know? Or did it predict an early Spring? lol

[walkonby]

Tara I heard one groundhog said early Spring , but Phil and the other one in Nova Scotia ( ?) said more winter!! ( who knew these buggers could talk? ) I am hoping you can fit everything in somehow despite this weather setback. Man you are juggling several plates in the air at once....or as you call it.....Monday. Take care.

[TaraF]

So the rodents can't figure it out, eh? Grrr!!! I'm just hoping for decent driving weather for Saturday since we have to hit the highway around 9am to get to Hamilton. Last I checked it's a 5cm snow day Sat with a 5-10cm snow day on Sunday, hopefully we get lucky as that seems to be total accumulation. And thank you walks. So long as the plows are out tonight and in the morning I should be able to get everything done tomorrow as well. I hope.

[avoncallingu]

Tara, I'm glad to hear that you are able to get to your MRI sooner, but could we let the Weather Network know that they should "pull a few strings" in your area?
I had to very nastily laugh today. I had forgotten it was Groundhog Day. I thought today was Feb. 1. There was a clip on TV where some "Official" leaned in to "hear" what the groundhog was saying only to be summarily BITTEN on the ear by said critter...."Leave me alone! I was sleeping!" was what the groundhog was actually saying!

Our groundhogs could certainly NOT have "popped" there heads out today. (2 ft. of snow on top of their tunnels)

Sending you good "spring-time" kind of thoughts!

[TaraF]

avon I've been watching the weather channel like a hawk hoping the snow holds off until Sunday! And you mean THIS naughty groundhog? *tehee* I don't blame him, I'd be like "you brought me out of a sleep into the cold for what?!"