Okay so the uncertainty is just how far I'll recover - y'all best hope it's all the way cause I plan to drive my car again!
If anything, just so I can do one of my favorite solo outings, like taking my e reader to an Indian buffet.
On the medication front I'm down to 1 steroid a day and that's great - ki stopped the zombyfying seizure pills cause I wasn't showing signs of seizure and the meds were leaving me in a really bad state, and I really needed to feel mildly better, not like my future was going to be dominated by this awful haze. I only remember taking them a couple of times, and then just setting them aside, but he says I took them for 5 days in a row. The nurse practitioner we met with said Dr Curti advised we keep taking them just in case but since Dr Ki was there and was the one who decided I should stop, she totally agreed and wrote a script for some Trazedone at our request to help me sleep better (my sleep has been sporadic at best) which I really think is funny as I'm taking half the anti depressant dose for the good sleep side effect.
Tips for sleep aids when you're a big n tall person :
Space the pills out rather than taking them all at once. That way you don't wake up 2 hrs later shock awake and super angry cause you know you were finally sleeping and you also know you won't sleep again that night. I can't emphasize this approach enough... Oh it stinks to realize you finally slept and then be shock awake again!
Oh and with less steroid intake, my body is taking over with adrenaline production and I'm working a lot to get my left coordination back (it's pretty bad right now) and we're doing a few practice walks each day.
It's amazing to have Ki here helping me learn to do things like walk safely - he knows how to provide support physically without doing the walking for me. It's so weird to not be able to walk on my own and such.- I'm kinda terrified that I won't be able to play music at the same level with my left hand... But I'm playing wii lego Star Wars which is helping and plan to see what i can do with an acoustic guitar today - freakin weak left hand, at least I can hold a cereal bowl!
You know this is such uncertain territory and in the last 3 weeks I've received the sad news that other friends of mine passed from their cancers, so I know I have some luck to still be here, and hopefully my progress will go beyond just being self sufficient in acquiring my breakfast needs, but will include traveling. At least I can speak again... Well that's a perk in my book if not in many others' right?
Saturday, March 30, 2013
Monday, March 18, 2013
Now coming to you from Corvallis
Wow, having brain radiation just isn't much fun. The process wasn't so bad, it's the month long hangover that bites.
Ki and I are now living in a home here in Corvallis and I'm slowly improving in terms of being able to speak and get around the main floor.
We have had extraordinary help with the move from great friends in Medford who helped Ki pack and clean our home in Talent as well as get our stuff into the new place here in Corvallis.
My mom and sister left for AZ a couple of days back and they were super helpful. With them here, Ki could keep working while my head is super fuzzed and I'm learning to kind of walk again. A fall at my height could be an issue. Thank goodness that wasn't added to the passing out drama I had to add to the last month.
I learned a friend passed thus week from cancer and want his partner to know how sorry I am for that. news. It gives me more incentive to try and get over this obscene hurdle I have and to do what I can to keep recovering.
Tomorrow we see my oncologist and will hope to get my EEG results. Which since I stopped taking the anti seizure meds will hopefully be normal... Those pills really left me feeling like crap so fingers crossed I did the right thing.
I'm really sorry to not have been very responsive to email, voicemail or texts lately but I have a difficult time tolerating much communication as I grow tired quickly and such. Know that I appreciate and hope to be able to have visitors sooner than I feel like right now.
It's amazing to be able to write and post something coherent. I promise some humor next time.
Ki and I are now living in a home here in Corvallis and I'm slowly improving in terms of being able to speak and get around the main floor.
We have had extraordinary help with the move from great friends in Medford who helped Ki pack and clean our home in Talent as well as get our stuff into the new place here in Corvallis.
My mom and sister left for AZ a couple of days back and they were super helpful. With them here, Ki could keep working while my head is super fuzzed and I'm learning to kind of walk again. A fall at my height could be an issue. Thank goodness that wasn't added to the passing out drama I had to add to the last month.
I learned a friend passed thus week from cancer and want his partner to know how sorry I am for that. news. It gives me more incentive to try and get over this obscene hurdle I have and to do what I can to keep recovering.
Tomorrow we see my oncologist and will hope to get my EEG results. Which since I stopped taking the anti seizure meds will hopefully be normal... Those pills really left me feeling like crap so fingers crossed I did the right thing.
I'm really sorry to not have been very responsive to email, voicemail or texts lately but I have a difficult time tolerating much communication as I grow tired quickly and such. Know that I appreciate and hope to be able to have visitors sooner than I feel like right now.
It's amazing to be able to write and post something coherent. I promise some humor next time.
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