Now, even more confused ... and in tears....

[ppearl214]

OMG! Too funny!  Thanks Kathleen... I did need that giggle!

I think my bosses attitude is.... as long as any potential outcomes don't interfere with my work performance or has other's questioning "hey, what's going on with Phyllis?" since they don't know what is happening, that may be his ultimate concern. Otherwise, I do have an extension cord long enough and more than happy to "shine" for the folks at the office!

Phyl

Phyllis: They want a note that your co-workers won't be effected by what is going on with you? Like do they think you'll be given off radiation or something? Tell them to plug you in and maybe they'll save on the electric bill.....idiots! Kathleen

[matti]

Phyllis - LOL! with Kathleen's comment. Can imagine your co-workers saying "Wow! Phyllis sure has a glow about her today". 

My heart goes out to you, the waiting part of this whole thing is the hardest part. Keeping you in my thoughts!

While reading your post regarding the steps you are taking care of, just wondering if I can tag along on #7? Nothing like a good bottle of wine to help you forget your troubles.

Take care and have a wonderful trip!

Matti

[ppearl214]

Matty,

You are too funny and yes, you can tag along on #7.  Spoke to his folks today and we are trying to plan the trip, all based on what decision I make (which treatment and when).  If I do go with radiosurgery (which, it does look like I'm leaning that way), I'm sure I'll be able to power up every computer in our office... and the printer... and the copier... and the coffee maker!  Now, if I can only light up my boss' smarts, ya know?

Phyllis

[flagger]

Phyllis,  It seems that you are getting very comfy with the radiation, great!  There was no recovery time for me in 2000.  I was able to continue without a hitch in a very high profile, stressful position.  The headaches I mentioned awhile back did not prevent me from getting things done.  Yes,  I did have facial numbness BEFORE the radiation and the tip of my tongue felt numb too but after and ever since, none of that!  I have just kept on with my life but feel a bit guilty that I did not check back here to help others know that after radiation you just move on with living and forget the whole ordeal!  The decision for action is the toughest and as others have assured you there will be peace once you make yours and get started.  I can recall that once I decided I could not get started quickly enough!  Five years and a few months later only a little trouble hearing in crowded rooms and tinitus which I started with.  Go for it!  The hardest part workwise for me was that I needed to travel every day for 28 days about 1 hr each way.  The treatment only took 20 minutes.  The mask and headgear looked scary but were not uncomfortable to handle.  I did experience very slight vessle disturbance on my chin but I have rosacia and it could just be from that.  I think I am the only one that noticed that.  What my doc used made sense to me because he said many lower doses minimized the risk of hearing loss and facial nerve impact. I am sure these past 5 years further advances have been made.  My best to you with your final choice. K

[Larry]

Phyl,

If you decide on radiation treatment, I suggest that you go to work with a geiger counter, give it to your boss (with a serious look on your face) and suggest that you best keep this in the office just in case I infect everyone with radiation!!!!

If you have one of those all encompassing white suits that would be good to. You may need to look for another job but the few minutes of facial expressions from your boss might be worth it.

Larry

[ppearl214]

K and Larry, thank you!  I do like the idea of the geiger counter and just want to know this.... if I will be able to "run" all office machinery due to radiation, will I get a raise since I'll be saving them energy costs???

Thank you all so very much. 

Update!

Beth Israel called.. they have reviewed all notes and films and confirmed I am a perfect candidate for Cyberknife (no wait and hold but time to do).  Booking an appt with their "team" (Dr. Ekkehard Kasper/Neurosurgeon, Dr. Eric Wong/Neuro Oncologist) in the Brain Tumor Clinic.  Dr. Mahatavan did the "read" and confirmed, CK is for me.

I'm actually at peace with this. I think knowing things are FINALLY being narrowed down and a "course of action" is putting put into place.  Now, I still have to meet with the Brigham/Women's team and waiting for a call back from them. They nurses aid up there told me B/W was also looking at getting CK machine, but still don't know what their new "machine" is.  Also, need to call Tufts to see about the GK.

So, all in all... holding together well and honestly, if it weren't for you all, I know I'd be in worse emotional state.... so, will use different language (this time) for all you do... domo arigato gozaimasu, mahalo, danka, merci beaucoup!

Phyllis

[okiesandy]

Phyllis,

I haven't been on the msg. boards for several days. I am still laughing. Your employers sound a lot like mine.  A few weeks after I was diagnosed I finially had to tell my boss that is was in no danager of falling on the floor and having a fit. If I did it would only be from frustration and not the tumor.

I had CK 1/5/6/ three sessions. I took the next week off to pamper my self. I was very tense before the first treatment. The afternoon after treatment one I went to lunch with my husband and daugher then my daughter and I hit the after Christmas shoe sales. Three pair that day.On day 2 of treatment I went to lunch and then my daughter and I bought more shoes. Then the week end came and I went to two movies and an estate sale. Monday third and final treatment. A friend and I went to the casino to play on the slots.

Now it is almost two months and the only thing that has happened to me that was not there before treatment is I lost a small amount of hair for about two weeks. My head felt a little hot for a few days after treatment. My balance changed a little. It did not get worse just different. No hearing to lose. No headaches, slight upset tummy after first treatment. Could be stress.

I went back to work the next week and the first day was a real trial. I made every mistake a person could make. It took about a week to get into the swing of things. They are still waiting for me to glow, or foam at the mouth or have some strange reactoion. I had some memory problems before treatment and they are about the same. Tinnitus is better. I do have some slight very quick stabbing pains on the AN side of my face. It is over before you could blink. The doctor said it is because the tumor was very close to the trigiminal nerve and it could be the swelling caused by radiation. It is so quick it is just almost not real.

What I want to say is so far, so good. One month check up was good. I don't even have the foggy brain thing for days now. I do not want to get too confident yet. Isn't it amazing how a neursurgeon can calm your nerves when they know the outcomes from radiation and surgery? My neurosurgeon. Does both and did not think I should go the surgery route first either. Yea!! I was scared spitless of it and can't say I was looking foreward to it. You go girl.

Sandy

[Larry]

Good on you Phyl,

Now with decision made, forget about the options, recovery time etc and enjoy your life.

Larry

[ppearl214]

Sandy,

OMG, you got me laughing now!  You are sounding like Imelda Marcos! How many pairs of shoes do you own now and did you win any $$ on the slots??? :)  Ya know, I'm getting the same feeling from my boss... am I going to foam at the bit? Convulsions? Will I run amock in the office, pulling at my hair and shutting off all computer related equipment?  Will I throw the glass coffee pots around if someone doesn't shut off the machine when the pot is empty? (hell, I do that anyway!).

I cannot thank you enough for sharing with me your "after affects" of the treatment!  I'm hoping I'm not going to lose any hair (it's one length, down to my hips) but heard I could lose maybe a quarter-size underneath, that my remaining hair would cover it.  Any and all you have described to me is so so helpful (I know that individual experiences can differ, but what you noted is truly helpful to me!)

So, when I have my treatments done, want to come to Boston to do lunch, shoe shop (I need some new fashion boots) and hit Foxwoods for the slots?   

Larry, thanks hun!  I'm actually feeling a bit more of emotional ease.... I think it's now, "ok, bring it on, let's get it done and book my tix to the UK/France".  It's nice to have a light at the end of the tunnel and in all honesty, it's one of the key factors helping me to keep my stress levels down.  Hun, I am living life, the glass is always 1/2 full and it's time to rock 'n roll!

Phyllis

[Kilroy1976]

I fell asleep at my desk the day after my radiation. The boss actually poked me with a ruler and said "you ok?" Like I was a body that he found in the park or something. Ugh, work...

[ppearl214]

well, it's easy enough to close my office door and sleep and have a co-worker wake me at 5pm to get me home.....

Thinking of just taking that week off (depending on how many treatments and how they are spread apart). I'm lucky that I have sick pay (actually, have 2 weeks of sick pay available), so should I take advantage of it?

*shakes head in disgust over boss' reaction*

lovely......

I fell asleep at my desk the day after my radiation. The boss actually poked me with a ruler and said "you ok?" Like I was a body that he found in the park or something. Ugh, work...

[matti]

Reminds me of the Seinfeld episode where George is looking to take a nap at work, so he has a carpenter come in and build a sleeping compartment under his desk, set-up with an alarm clock, pillow, and blanket.

matti

[ppearl214]

what? no tv under the desk?  Ok, who's gonna build this thing for me under my desk and will they be on hand to make sure I'm awake at appropriate times? (ie: when the radiation-fearing boss walks in to find out why his expense reports were not processed, to answer the phone to tell my Israeli customers that the shipments they are trying to track actually shipped 1 month prior or... to make sure I use the bathroom at appropriate times and no have an "issue" while sleeping under my desk?)

Heck, I think I'll just take the time off to play it safe... from the way things are sounding, sounds like it may be a good idea.

Phyl

Reminds me of the Seinfeld episode where George is looking to take a nap at work, so he has a carpenter come in and build a sleeping compartment under his desk, set-up with an alarm clock, pillow, and blanket.

matti

[wind6]

Hi Phyl, I haven't been around for a while and want to tell you I am so sorry I wasn't available when you needed support. I am very impressed with your determination to find the right treatment for you. I believe you are going to come through this just great. I can not imagine the fear you must have felt when you were first diagnosed, considering that you lost a sister to a brain tumor. Terribly sad and heartbreaking.
I think its just great reading the radio-surgery stories in here. I so wish I would have felt safe with that treatment but, alas, I will never know for sure if I made the right decision or not. I do have to say tho that my recovery is coming around so much better that I thought possible in the beginning. My level of paralysis is at House-Brackmann score of 2. I was a 6 when I came home from the hospital. It just amazes me reading the stories of people going out to lunch and going on vacations immediately after treatment...How truly wonderful!!! It has been almost seven months since my surgery and I am just now starting to resume my life. I started back to school a few weeks ago..its very tiring but I feel so much better getting out and gaining back my life.
Anyway, I really just wanted to tell you I think you are doing great. Hugz 2 you All, Sherry

[ppearl214]

Sherry,

Thank you so very much for the hugs and wishes!  I'm hanging as tough as I can and in communications (off-line as well as online) with folks that either deal with CK or have gone through it.  I have heavily weighed options for micro-surgery vs. radiosurgery and when my NS here in Boston told me she didn't want to cut and to go with radiation, I almost fell off my chair!  Like you note about making the right decision... is any decision truly the right decision in this kind of scenario?  We are all so individual in treatments, reactions (physical and emotional), thought processes in how to go about choosing, etc.  You did what was best for you and look... you are back in school and coming along fabulous!  My hope is that... if I continue on the decision path of CK, that it will be the best decision for me.  I learned a LONG time ago that doctors are certainly not Gods and have learned to run like hell if they think they are.  I'm not drowning myself in research but trying to be as well-informed as I can be. Trying to keep my family calm in  light of everything is really the tough part... but, one of my sisters told me the other night that she is very proud of me and my handling of this situation.  That was a nice warm/fuzzy at a time that I need it.

You may have not been around lately, but I'm sure you have been sorely missed here.  And I thank you so much for the words of support and the hugs!  Back atcha!

Phyllis