60-day GK Update

[nanramone]

Almost two months after GK - imbalance has increased since GK...therapist said I'm performing about 1/2 of "normal"...still I've been at this for a month, and there is improvement. One and a half years ago, I was running 5K races...yesterday, I jogged on a treadmill at the speed at which I would normally walk fast, and had to hold the rails the whole time...but at least it is a beginning! I want to run and dance again!

I have an obvious decrease in hearing, but have not been tested - but the Dr. said I should anticipate this, because the tumor is extremely close to the cochlea, which probably suffered peripheral damage from radiation....also, tinnitus worsened.

I have only had one bout of nausea.

I am greatly fatigued, and sometimes take 3 naps per day, even after 8 hours+ of sleep! This bothers me.

I feel dizzy much of the time, but still go about my business and stay as active as I can.

That's my report as of now.

[free2be]

Hang in there. I'm no expert on this (yet), but thing will get better.
Connie

[nanramone]

I should add that this has been a more difficult week than usual - and as everyone will say, there are certainly ups and downs. Tomorrow I plan to go out to a local art gallery walk, and Saturday I've been invited out with a group to see a play in Indianapolis - so life is good! I don't mean to sound so negative. All days aren't so bad at all!

[Lizard]

I guess you just have to go with the flow and be patient...sounds as though you are in good spirits and improving.  Keeping your attitude positive will help your recovery, so keep up the good work!
Keep us posted!
Take care,
Liz

[Vivian B.]

Hi There,

I am three weeks post GK and have had bouts of nausea, some days better than others, my hearing seems the same so far and no dizziness so far. Hopefully your symptoms wll subside. I try not to think too much about what is happening in my head and try to believe that this thing is dying regardless of how I may feel. Oh, I have also had fatigue and some headaches Hang in there. Just picture this thing self destructing. You will feel better.

Thanks for sharing.

Vivian

[Jim Scott]

Nancy ~

I'm sorry your recovery from GK isn't going quite as quickly or smoothly as you would prefer, but this feeling is pretty common for AN patients.  I had a fabulous recovery from surgery and radiation  (on hindsight) but still thought it took too long.  Still, you seem to be doing fairly well for just two months out from the radiation procedure.   The fact that you're determined to remain active is an excellent decision.  I did the same thing and believe it helped my recovery by moving me past the procedures and back into the mainstream of life.  Like you, I simply worked around the deficits (mostly fatigue, in my case).  I think it's safe to state that your 'good days' will soon begin to outnumber the not-so-good days.  Look forward to that - and tell us about it when it occurs.  Thanks!

Jim 

[nanramone]

this past week was a better week! rehab today, and the therapist said I have made great improvement, probably due to diligence doing (boring) at home exercises.

Now, I am enrolled part time in school which starts at the end of August. I've been unemployed since last September and I'm about to give up on the idea of finding work.

I saw my GP today who thinks I may have underlying depression, which I suppose is reasonable under the circumstances. I'm not sure I want to take anti-depressants though.

Well, thanks for support and this is a really valuable forum to those of us who need it, isn't it?

: -)

[Tumbleweed]

I am three weeks post GK and have had bouts of nausea, some days better than others... I try not to think too much about what is happening in my head and try to believe that this thing is dying regardless of how I may feel. Oh, I have also had fatigue and some headaches...

Hi, Vivian:

In fact, the worse you feel, the more likely it may be that your tumor is responding very quickly to the radiation and is beginning to die a quick death. I had an atypically rough time after getting CK, suffering very profound fatigue for two months. My first followup MRI showed atypically widespread necrosis, along with tumor swelling -- the bugger didn't like the radiation one bit! I got my reward for putting up with the unusually strong reaction, when my tumor shrank an incredible 59% from its peak volume in the following six months.

So everytime you feel especially bad, just remind yourself that it's the tumor reacting as you had hoped it would to the radiation and it's simply refusing to go quietly. But go it will! It's already happening.

Best wishes,
TW

[nanramone]

Oh gee, thanks TW! What encouraging words!  :-)