Completed CK at Stanford - now a Toasty Posty Boasty

[lalehjg]

I completed my CK at Stanford on Friday with Drs. Chang and Soltys.  Altogether a GREAT experience, and Drs. and CK team were very supportive and professional.  Never for a moment doubted my decision.  Took Ativan for the treatments, although I really could have done wihtout it  I looked forward to the treatments as meditation, and was not nervous at all, even a little.  That was surprising to me, given that I'm usually pretty high strung and tend to get quite anxious no matter what.  I was in CK2 and the CK device's name there is "Levi," my new best friend.  Took Decadron for the three days, and that made me jittery during the day and caused insomnia at night, but, small price to pay to treat a brain tumor!

Now, three days post completion, I am positively EXHAUSTED.  I am dizzy, and I feel my ear on the AN side is full.  I have some tinnitus, and feel like a truck went over me.  Sleeping is weird, because when I'm about to wake up, I feel I am emerging from a slowly moving vortex, or I am swaying.  I thought these issues would not emerge until later on, maybe two or three months post treatment.  Has anyone else had these issues immediately after treatment?  What did you do to deal with it? 

Thanks, and glad I'm in Phase II now:  recovery! 

[Tisha]

Hi, I had CK at Stanford also, with the same team, in January 2009.  I really think everyone's recovery right after is quite different.  I wouldn't hesitate to email the nurse and ask questions.

I was perfectly fine and felt great for 3 weeks (except for some distortion and fullness).  3 weeks after CK I completely lost my hearing in my AN ear.  I woke up one morning and it was completely gone.  I called out to Stanford at 4:00 am their time, someone got woke up, and was so nice about it and started me on very strong steroid regiment.  My hearing started slowly coming back that same day and within 3 days I felt much better.  Everything went back to where it was except in the 6000-8000 hz range, where it went from almost perfect to moderate loss to this day.  At least that is not in the conversational ranges.

so....I don't think your symptoms are unusual as a whole.  I do have tinnitus now in my AN ear after CK...I didn't have it beforehand.

Balance is much better!

Tisha

[sunfish]

Sounds like you're going through much of the same experience as I had last month.  Supposedly, my docs used the "Stanford Protocol."  I had lots and lots of tinnitus for about a week, which gradually decreased back to near-normal for me.  I also had lots of the wonky-headed, floaty disequilibrium thing.  Hmmm . . . let me think . . . I had CK March 16-18, and my first, really completely "normal" day was March 29.  Yup, "hit by a truck" would describe my experience. I tried to go back to work on March 23-24, but it didn't work for me.  Have been back to work solidly since March 29.

If you've followed my recent posts, they still can't get my blood pressure back down.  The flip side: The ENT and audiologist were astounded by my hearing improvement today!

I bet you will feel much, much better in a week or less.  Get more rest than I did!

[leapyrtwins]

Congratulations, Sunfish.

Being a toasty posty is definitely something to boast about!

Jan

[sunfish]

Nope, Jan. Lalehjg started the thread - she just finished treatment at Stanford.

[leapyrtwins]

Nope, Jan. Lalehjg started the thread - she just finished treatment at Stanford.

Duh!  See what happens what I try to post from work - where I'm supposed to be working 

Sorry, Sunfish - and thanks for pointing out my error. 

Congrats to you, Laleh.

Jan

[crivers]

I too just completed CK with Drs Chang and Soltys - last week in fact. The only difference is that 8 hours after my last treatment on Friday, I flew back to Perth AUS. So now I am here and feeling about like you describe, only with the added pleasure of the jetlag.

First - I agree that it was a very pleasant experience at Stanford. What a great team and it seemed almost too easy, didn't it?

I had tinnitus prior to treatment and I have it now - seems a bit worse, but I am hopeful that it will either return to previous levels (which at times was non existent, because my brain has developed a way to eliminate it when I'm not thinking about it).

I too have a full ear and I am convinced that my hearing is worse now than it was last week prior to the treatment. I am also confident that this is short term. Even though I have lost quite a bit in my right ear, it is still "useful", so I'll take it.

I am tired as well. While normally a 6 hour per night sleeper, I have been going 9 hours +since I got back. I tried to go back to work on Tuesday, but that didn't work out that great. I seem to be fine as long as I don't have to think to much or exert too much. I'll try to go in next week.

I'm glad to join the group of recent posties from Stanford. I wish us all the best.

Cheers,
Cayce

[lalehjg]

Thank you all!

Sunfish and Cayce:  it's good to be in touch with you to compare notes on how we're doing.  It's good to know, for example (although I wish it were different) that this tiredness and need to sleep is not just "in my head" (no pun intended -  ). 

here's my update:  I usually work pretty intensely, and have two small children 5 and 7 for whom I am solely responsible. That having been said, I am giving  myself permission to sleep a little more, relax a little more and feel OK about it.  I went straight back to full time work this past Monday right after treatment, and am trying to work out 30 min/day, and I can do that, but it's a challenge.  Am taking next week off to chill-out and relax.  I get dizzy/tired and "wonky" intermittently, and need to take it easy for a while before I can go back to work.  My ear feels full, and it sometimes feels "sore" in there.  sometimes, I feel like i'm falling into a hole in a vortex-like manner. 

I would like to spell out what I'm doing to make this a good experience.  I figure this may be of use to some:

exercising 30 min a day (I push myself) or more if I can
i've been making fresh fruit shakes for me and my kids morning and evening:  berries (especially blueberries), mango, strawberries, peaches etc, with organic vanilla fat free yoghurt, organic reduced fact milk and ice, blended.  I drink that for breakfast and as an after-dinner treat
no coffee and no alcohol (seriously - it's difficult, but I've made a decision)
decaf green tea all day
fresh fruit (an apple, orange, and a few tangerines every day)
green leafy vegetables
a multi and calcium (but nothing fancy there)

on a mental level, I have been trying to understand what negativity may have brought this AN about.  Although this concept is subject to debate, I figure it doesn't help to take a positively critical look at the way I've been doing things. 

To help me along, I am reading:

Pema Chodron's "When Things Fall Apart", a Buddhist perspective on how to deal with difficult situations that inspire fear/anger/guilt/resentment etc.  I am also reading Wayne Dyer's "the Power of Intention" but finding the style rather annoying/gimmicky/commercial - that having been said, it talks about finding the YOU beyond your afflictions - and this comes in handy in our situation

To further help me along, I am seeing nurturing friends and family more, and making peace with fact that some un-nurturing people/family no longer have a need to have my attention (I know this sounds harsh, but it's a fact). 


By the way, does anyone have any articles on how the radiation actually kills those pesky AN cells?  I know it has something to do with ionizing DNA molecules and creating free radicals, but I would really like to know what's going on in there.  If anyone knows, let me know!

Thanks, and will keep reporting.

Laleh

[sunfish]

Yum, smoothies!  Now I will have to make one today.  This morning, I went for a 2 mile run before work with my headlamp.  I was a little nervous before about running in the morning, although my husband's at home, and would look for me if I didn't come back.  Very safe neighborhood.  It was great!  I'm fairly sure-footed this week (with the exception of two 'staggering' incidents, one of which just happened at work). Increased tinnitus yesterday evening, that even my hearing aid wouldn't "drown out."  But that's gone today.  Blood pressure still a little high, even with the bp meds.

I will look at the books you mentioned.  Wayne Dyer is kind of hoky, but he makes some good points.  I'm pretty sure negativity doesn't help my AN grow.  I'm pretty sure that positive thoughts/prayers help it croak.  I can tell you one thing that's negative right now - that's how our little, sunburned ANs are feeling today!  You mentioned the mechanism by which this occurs.  I don't know for sure, but some of it's called 'apoptosis,' or cell death (I like that word, because I think it sounds like what the AN cells are doing: POP!!)

[lalehjg]

Difficult weekend!

Tinnitus and dizziness.  I can drive without a problem, but forget standing and having a conversation.  I have to hold something or touch something still to orient myself.  I am tired tired tired.    I took a three hour nap today, and am still tired!  When I sleep, it seriously feels like I plunge into a swirling coma, rather than just normal sleep.  I feel like my head is full, and I keep having to pop my ears.  I have a headache too.  Helloooo recovery period.  I know I will be fine though, eventually.  Just need to strengthen my body, have good thoughts, and look forward.

Husband was away for three days and did not get back until today at noon  Had to take care of kids 5 and 7 essentially by myself with some help from my mom, but frankly I do that when husband is here AND I take care of him, so nothing new there.  Difficult but did it and kids are healthy and happy, but it takes much more out of me.  I sometimes have to explain to them that mommy is feeling a little tired and can they speak more softly or not scream.  I don't want them to remember me as this ailing person, so I need to keep keeping on.

My thought:  as long as this tumor is dead/dying, all is good.

Love to you all.


Laleh

Will keep reporting.

[crivers]

Laleh,

sorry to hear about the dizziness. Did you have that before treatment? I am lucky that I didn't have that issue. I am sending positive vibes to you for quick improvement. I am feeling better each and every day. Still headaches, but not as bad, still tired, but not as bad. Feeling good in general. I completely know the feeling about the not wanting the kids to think of us as frail and sickly. Gotta keep active, but not overdo it.  Glad you have family around to support you. I couldn't do it without mine.

All the best and I look forward to future posts.

Cayce

[lalehjg]

Alll.

Difficult day today.     Yesterday and day before were better.

I was so dizzy and nauseous could not make it down the stairs unless I slid down on my bottom to go make kids' lunches this morning.  Threw up about 30 min ago and feel slightly better.  Yes Crivers had dizziness and vertigo issues before CK.  That's how i found out about AN.

I got kids ready and sent them off to school and now I am resting.

Send prayers.

Have to go now cannot even stay seated and look at screen.

Love.

Laleh

[ppearl214]

laleh

I am so sorry to hear that today is not a good one.... keep reminding yourself... for so many, such as myself that came before you and understand what you note...... keep an eye on the "prize".  Remind yourself of the ultimate prize, in the hopes it helps you feel better.

I'm cheering you on! Hang in there!
Phyl

[sunfish]

I'm sorry to hear you've been struggling and not feeling well.  Recovery from this CK thing is not exactly a walk in the park!  My neurosurgeon this week says he thinks it can actually be harder to recover from CK than GK, which he also did for 10 years. Hopefully, this is just a temporary stage of recovery for you.  What do the docs say about your vertigo/nausea?

[crivers]

Sending all I have your way today...keep up the good fight, you'll make it through it.
Cayce