now at 4 weeks after ck

[carter]

 Tuesday was 4 week anniversary - tommorrow will 1 month after CK.

i have made it through this time period and am still doing well.  ck in Tulsa, Ok.  i liked dr very well going in ... no communications with him since original consultation??  this part surprises me.  no staff person caalled to check up on or anything.  teh person performign the treatments said that i would nbe contacted for 8 week mri / follow up. ...  this is after i asked at end of the last ck treatment ...  no other communications ... otehr than copies of bills to insurance company.

i had planned to take off for th elast treatment (1/2 day) and rthe day after.  a week after the treatment, i traveled and did well - just would get tired.

teh second week out, i took off 1/2 day - at mid week to jsut relax.   tehn i decide d to take off the following weds. for teh thet next two weeks .... so as to work 2 days - 1 day off - work 2 and have the weekend.  life has been much better this way.   i probalbly did not have to have off yesterday - but it did feel good to sleep in an jsut do 0 before noon.   i used to never sleep past 6:30 -- i have set a new reord ... slept till 9:00.

i have 0ne big headache (could feel every heart beat) since treatment - should have take a big pill - but did not.   i have had several days with a pressure feeling form about half way down in the head.

hearing is still about the same.

during the last day of treatment - the tech and a PA said that teh ache that i was feeling was due to the CK ...  that subsided after about 3 weeks.

my only other issue is a stiff neck?  tight muscles? 

the faique is getting much better ....

no pian pills taken - just learned to keep a botle of tylonol in the truck .... i have taken a bottle of these to date.

all in all - life is good.   i have learned that a lot of people do care ...  you mention brain tumor and you do get sympathy ....  the wife will get the second cup of coffee for me while i stay in the recliner ....  work continues even if i miss the day (weds).   i got a heck of a good wife!

i write this to show others that it does turn out good.  but i hoe that it does not bother those that are having problems  --- for my heart does go out for all.  honestly, i am not bragging.  but i will admit that it is going good for the present!!!!

hope all are well and my prayers for those that need it.


carter

[mk]

Carter,

I am glad to hear that things are going well for you. It seems that you are on the way for a good outcome. Our cases were very similar with respect to size, conflicting consultations (and even lack of follow up  and oh, yes, I always carry a bottle of ibuprophen with me) so I am following your recovery with interest.
Please make sure that they do schedule an MRI for you at 3 months. With the size of our ANs it is very important to check if there is substantial swelling at that point. My 3 month MRI put me a lot at ease, up to then I was very anxious.

Marianna

[sher]

Carter,

I hope all is well with you... I too did not have a team of doctors who check up on you. I think it can just be a doctor thing. I am the first AN that they have done in my clinic although the doctors all were at other CK clinics before. I have to remember that they don't only treat AN's they have others that they treat. Hang in.. Just be aggressive in getting answers from them if needed. My docs have answered my questions when I have called. You are on your way to killing this thing and that is what counts.

Sher

[Tisha]

I think the docs are so busy, that they just assume we'll get ahold of them when things go wrong....which I DO immediately, like my emergency phone all to the on-call neurosuregaon and radiation oncologist at 4:00 a.m CA time! They were great, woke them out of a dead sleep and both said I was doing the right thing.

That MOnday, after e-mails to Dr. Changs/Solyts nurses and secretaires, found out he was in surgery all day and he still called me that night.  His nurse has been contacing me iimmediatetly with any question and forwarding to him and he called a second night.  She asks how I am and wants me to do another audiogram after steroid use and send it in.

I really thing these people are swamped and we have to take charge of our post-treatment care, and they are more than willing to help out on their end when we do that...at least thats STanfords way.

So glad you are doing good!  It's nice to have that part of the journey finished with.

Tisha

[ppearl214]

Hey Carter,

"Day by day, inch by inch....."... you are doing great! Onward and upward to wellness and keeping fingers crossed that the CK is doing what you need it to do... stop that brain booger from doing any more growing!

Congrats on one month!

Phyl