ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: chloes mema on March 30, 2012, 04:37:26 pm
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Went to a new oncologist, Dr. Greenberg, today for another opinion. I'm going to stop going to doctors for more opinions since each one I go to gives me worse news than the last doctor. So today's “worst†news is that the tumor IS touching the brain but barely and since it grew +2mm (he’s saying it grew 3mm) in 5 months I need to do something and do it soon. Procedure would be three treatments of radiation with CK.
So the good news is I really like Dr. Greenberg. The cyber knife center is right near our house. Dr. Greenberg had been Head of Radiology at Moffitt for 15 years so he knows about Novalis and now he's Medical Director of Brandon Cyberknife, has been for 5 or 6 years. He spent over an hour discussing GK, CK, Novalis, and a little on surgery. After this conversation I will do CK not Novalis.
If he had said get on the table today I would have. Actually, I told him I wanted to proceed and he said no, think about it for a few days then call me if you want to do this. He really wanted me to go back to the neurotologist and have him explain surgery but I said I wasn't interested. I think doctors are tired of hearing me say that. ;D
He said mine was not a neuroma but a schwannoma. Whatever, just kill it!
Not even his patient yet and he gave me his cell number just in case.
At least I'm smiling and not crying any more. It's good to have a plan. I feel like such a weight has been lifted off of me.
Thanks to everyone who writes go with your gut you'll know what's right when it's right. It is true!!!! ;)
Probably will start planning end of April or first of May. Will keep you all posted.
Karen
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Congratulations on reaching decision! I hope all goes well for you.
-Tod
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I would like to think that for most of us the decision on what to do is by far the hardest. I am glad that you feel comfortable with the doctor and the decision. Having had CK about 15 months ago, I can tell you that it is very easy to get through.
Best of Luck
TJ
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Karen -
this is just the kind of doctor you want.
Congratulations on making your decision!
Jan
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Sounds like a fantastic doctor - does he have a clone somewhere?? Isn't it great to have made a decision - just wait until after the treatment - you'll feel like a million bucks!!
Keep us posted.
Sheryl
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Congratulations on making your decision -- and choosing CK, a great treatment plan -- Karen.
It sounds like you have an awesome doctor.
Btw, a schwannoma is a type of neuroma. But who cares? Glad you've got a plan to kill the sucker, by any name!
Best wishes,
TW
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WOW Karen - it's really good to read your post. What a great choice in doctors. Mine gave me his number as well and that makes it so much easier to handle.
I'll watch for more posts.
Suu xxoo
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Sounds like a fantastic doctor - does he have a clone somewhere??
Actually he probably has several; my neurotologist fits this bill :)
Jan
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Oooookkkkk! Friday I get a message to call Dr. Greenberg (oncologist/radiologist) to set up my dates but when I call the number that was given it's to a diagnostic center at USF. They want to set up my appointments for CT & MRI for CK. I said I don't even know when the CK is going to take place, don't I need the mask made, don't we need that date first? I said I thought the CT & MRI would be done right before the procedure. The lady on the other end sounded rather miffed & said call back when you have your information. Excuse me?
I'm not getting the warm fuzzies about this left hand not knowing what the right foot is doing routine. So I have my list of phone numbers and names to call Monday morning which ought to be fun since the offices were closed Friday.
Just needed to share that little tid bit of info. :D
Happy Easter
Karen
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Hi, Karen ~
I'm sorry to learn about this apparent confusion regarding your Cyber Knife treatment protocol. When medical office staff are dismissive and/or rude, it is extremely off-putting and doctors should realize this. You're facing a serious situation and treatment but being told you need CT and MRI scans when you don't yet have a date for the treatment? That is illogical and, as you noted, doesn't speak well for the people involved in the CK procedure. Your follow-up calls should be interesting. I trust you'll be able to get your questions answered and the whole business straightened out on Monday. Meantime, a Happy Easter to you and yours.
Jim
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Karen
I had my CT and MRI and face mask done at least a couple of weeks before I started my CK. They have to do that so the team of doctors could meet and map out the treatment. Then then put that info into the computer and at that point they can start your treatments.
So I really don't think you need actual CK dates before they do that.
TJ
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I was of the impression from the oncologist (of course, I'm so hyper now a days I'm probably totally wrong about this) that the mask, the MRI, and the CT would be done within days of the CK. I also thought I understood the doc to say that scans would be done, the mask molded, then another set of scans. I also thought I had to go see the neurotologist before anything could be done, but what do I know, I'm only the patient in this drama doing too much thinking. ;D
I'm assuming that the oncologist did send my name up to the diagnostic center but it would have been nice if someone told me too.
Yes, getting answers Monday (I'm really thinking that it'll be Tuesday because Mondays at doctors offices are always hectic) should be interesting. I'm already making another list of questions.
Do they usually make the mask at the same place they do the CT & MRI? When I toured the CK center I got the impression they make the mask there.
Have a wonderful Easter (I've already gotten into the chocolate! :D )
Karen
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Karen ~
In my radiation experience (FSR) the 'mask' was made about a week prior to the treatment sessions - at the radiation center (actually, it was called a 'cancer treatment center' but I avoided using that term - for obvious reasons) but the CT and MRI scans were performed a day before the actual treatments because my neurosurgeon and radiation oncologist wanted the most recent 'views' of the (remaining) tumor so they could 'map' the radiation beams precisely. It worked!
Jim
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Jim
You're experience is exactly what I thought would be mine (in the sense of mask & mapping). Well, Monday will be here soon enough and I'll find out. Or maybe Tuesday since I figure Monday will be hectic at the doctor's office. :D
Was the "mask making" uncomfortable or just doable? One oncologist said it was "no walk in the park but doable" and the oncologist I chose to go with never made a comment one way or the other. It's just the fear of the unknown for me since other than child birth I've never had any big medical procedure. :)
Karen
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Jim
Was the "mask making" uncomfortable or just doable?
Karen ~
It's tolerable. They use a thin plastic full-face mask with a small mesh pattern that is warmed up (a lot - but it doesn't burn) and placed on your face until it cools (about 15 minutes). The goal is for it to tightly conform to the contour of your face. It is very snug, The 'holes' in the plastic mesh are used by the radiation technician to 'aim' the beam. On the FSR table, the back of the mask is bolted to the table so you cannot move your head. That is so the carefully plotted radiation beam 'hit's' the right spot. I needed two tries to get the mask right. Very tedious but not terribly uncomfortable. However, anyone suffering with claustrophobia would have a difficult time of it. Fortunately, I'm not claustrophobic and I didn't. Remember, I had FSR, not CK and the process may be slightly different. I simply offer my experience for whatever good it may do.
Jim
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Jim
What you described sounds like what they told me at the CK center. They showed me a "mock mask" and also the original mesh before molding. Also, showed me how the mask is secured to the table for CK. Sounds like a little valium may be in order in my future. :D
Karen
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When I had my mask made it was a piece of cake.. it was warm not hot, and too about one minute.
My CT scan was done 24 hours before CK and my MRI was done 2 weeks earlier.
Because your AN grows so slowly and the amount of growth is typically immeasurable in short time frames.
so having your scans done a few weeks earlier is no big deal.
Treatment planning also takes a full day, which happens before your treatment
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PaulW
Why I'm concerned about all this timing is because my AN grew 3mm in 5 months so I want to make sure the doctors have an almost up to the minute "view" of this thing.
I woke up about 4:30AM this morning feel very anxious and having second thoughts about this whole CK drama. I want to do nothing but obviously that isn't a good option under the circumstances. I'm wondering now if I should switch doctors AGAIN and try to go with Dr. Chang at Stanford versus local doctors.
I guess you can second guess yourself to the grave.
Karen
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Hi, Karen:
Sorry I didn't see the latest updates to this thread til now. Here's my experience:
I had my CT scan taken the day before I was treated. The fitting of the mask took only minutes and was very easy to deal with. My AN had also grown at an alarming rate leading up to my treatment, so I was glad that the CT scan and planning happened just one day before treatment.
As for the snotty treatment you've received from staff, I can only say that that would likely not happen at Stanford. I've been very impressed with how friendly, efficient and knowledgeable virtually everyone on staff at Stanford have been. (The one exception was a reading radiologist there, a Dr. Scott Atlas, who consistently made huge errors in my MRI reports. But Dr. Chang never relies on those reports; he makes his own measurements from the MRIs.)
Bottom line: If you're not comfortable with the staff at your local facility, get treated somewhere else! One caveat: It's normal to have doubts about getting treated, right up until you climb onto the table. I was scared and doubtful right til the end, but I had an incredibly successful treatment. So don't wait until you feel totally cozy with the idea of getting CK to actually schedule it; that day might never come, but it's not prescient of looming doom, it's just natural fear taking over. Choosing a team you're comfortable with is another matter, however. You have to also consider who you want to deal with for years after treatment, for your followup appointments. This should be as easy as possible for you; you've been through enough already!
Best wishes,
TW
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Went to the CK center Monday because the oncologist's nurse said they had all my dates for me etc. Got to the CK center only to find out that I have to have the mask made, the CT & MRI done BEFORE the doctors can / will even look at a date.
Well, I lost it! I told the lady at the reception desk that I was not venting about her but I was venting to her. She got the facility manager & the three of us had a long talk. Come to find out neither of them care for or think much of the oncologist's nurse either & the manager told me unless I need a prescription filled DO NOT call the nurse, call the CK center.
So.... this Friday I'm having the mask made, they said should only take 10 minutes. So is this mask making a need for Valium? I figured I'll try it with out & if need be I'll pop a pill & try it again. I brought up the fact that I should probably wear no make up & the manager said that would be a good idea since the process is wet & warm.
Then next Tuesday I go for my CT & MRI with contrast. Now, that I know is a "Valium moment"! ;)
Also, Monday I have an appointment with the neurotologist so I guess it's too late to back out now. :-\
I guess the ball is really rolling & probably no stopping it now. I think I'm back in that mind set of just get 'er done!!!!
Two questions:
1. Is the mask making a valium moment? (I know I already asked that)
2. Should I have some one home with me the week end following CK procedure?
Karen
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Hi Karen,
The mask making for me was very simple, like about one minute.. maybe less.
It was warm and slightly moist, and not wet.. About as dramatic as getting a hot towel on your face...I think the hot towel could be worse, and I have had hotter hot towels, and had them on my face for longer too.
I did not require any physical support when I got home. However all my symptoms I had pre treatment did get worse after treatment.
The symptoms were annoying more than problematic. Driving required more care, especially at night, and I can understand why some would feel uncomfortable driving.
My wife is a stay at home mum, so having my wife and family around was very nice and they provided a lot of moral support.
Having someone at home was definitely nice, but not essential for me.
I have my own business, I went back to work a few days after Cyberknife because I got bored at home, not because I had to go, however I cant say I was all that effective. The wonky head feeling definitely slowed me down.
21 months post Cyberknife, and I feel great
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Paul
Good things to hear!
I kind of figure the mask making won't be any worse than a facial or a massage. Not real concerned about that. (at least I'm trying not to be) ;D
My husband does a lot of volunteer work with hospice and will be away for three days so I was thinking I should schedule my CK procedures around his being home but if the after affects aren't much worse than what I have now maybe that won't be necessary.
Glad to hear from someone who had a successful and easy time of CK.
Karen
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Karen:
I too found the mask-fitting to be a breeze. Really no big deal. And I say this in the context of being a bit claustrophobic in the MRI tunnel. There's really no comparison. I think you'll probably breeze right through the mask-fitting.
I recommend you err on the side of caution and have someone home with you after you have CK. I was a wreck afterwards. I had an unusually strong reaction. However, that was because the tumor didn't like the radiation. It died very quickly (very widespread necrosis throughout the tumor at only 5 months post-CK) and, after first swelling, shrank dramatically. The rough ride was totally worth the end result.
Anyway, my point is that some people breeze right through CK and suffer no after effects but others -- like me -- get hit with extreme fatigue and possibly increased dizziness and other side effects. Have someone at home with you just to be on the safe side.
Best wishes,
TW
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TW
Thanks for the insight. I was thinking along those same lines - I'm not expecting any side effects but if there are I don't want to be home alone. Most of my friends have said not to be home alone and they haven't had CK. It just makes sense to have someone here.
Even though you had a rough go of it, it's good to read a success story.
Needless to say, I'm very nervous about this and am trying to back out at every turn. If there is any chance I think I can get out of this I'm trying to take it but I know that's stupid because something needs to be done.
Karen
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Had my mask made today. Piece of cake!
Woke up about 3AM, laid in bed until 6AM stressing over it.
Finally, went out to breakfast, then to the gym, then sat in the sauna, and THEN went for the mask making.
While I was laying on the table waiting for the mask to dry I kept thinking it's just like scuba diving, remember to breathe...
Certainly looks funny.
Thanks all for your reassurances on this part of my journey; if the rest goes half as easily I'll be a happy camper.
Karen
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Karen:
Dunno if I already directed you toward this thread or not, but if not, I think you'll find it contains useful info:
http://anausa.org/smf/index.php?topic=6910.0
Best wishes,
TW
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TW
Thanks so much. No I had not read that before but it came at a perfect time since I've been working on my "questions for the doctor" for tomorrow's appointment and this thread gave me more questions to ask. I told my friend and husband this morning that I have about 25 questions that I want answered tomorrow and I'm NOT going to let this doctor blow me off like he did last December when I saw him. It's my brain so I want decent answers or I'll go some where else that is if I'm not beyond the point of no return which I think I am. :(
I thought I was doing fine but I can tell I'm getting very anxious and this is only for seeing the neurotologist tomorrow. Tuesday I have my CT & MRI for mapping.
Do you know, do they put the mask on me for the CT scan? Or do they just use the mask some how during the mapping?
Karen
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Radiashun to my Brane never dun me no harm ;D
The CT scan and the MRI are done without the mask.
The mask is only used for the treatment.
The CT scan is used to build a 3D model of the boney structure of your skull.
The MRI creates a 3D Model of the tumour.
In the treatment planning they merge the two 3D models into one.
They will also plot out organs at risk like the cochlear and the brain stem, to make sure the radiation dose to those areas are minimised.
During treatment, the Cyberknife takes 3D xrays and adjusts the robot to match the CT Scans.
While Cyberknife does not have a Headframe, the CT Scan and boney structures of the skull, are the "Head Frame".
Because many small AN's are encapsulated inside the boney Internal Auditory Canal, its also makes Cyberknife very accurate in the treatment of small AN's.
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Had my CT and MRI for mapping done today.
CT was done with the mask on which was an enlightening experience. Now I know I will have to have drugs to make it through the CK procedure. CT lasted about 5 minutes which was about all I could take. Also, came out of there with such a sore neck and upper back I guess from nerves and maybe odd positioning.
I'm feeling very down / depressed tonight. Hopefully it's from the Valium but I've not had this reaction before. Guess it's finally reality setting in.
Anyway moving right along.
Karen
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Hi Karen
I hope you're feeling a lot better by the time you read this. It's a process. That's it, just another process.
Next time you're on your back can they put a little foam 'cushion' under your knees to take the stress off your back? I have one under mine whenever I have any sort of procedure that requires me to be flat.
Lovenhugs to you,
Suu xxoo
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Suu
Thanks, feeling emotionally better but my neck pain has now started to include my upper back so I made an appointment for a deep tissue massage today. :D I also went to the gym and did a good work out which I had hoped would help but didn't.
I hate to be such a wimp. Had a bit of a pity party last night which I think did help; got some of the frustration out.
Now I'm waiting for that inevitable call which will tell me what the dates and times are for my CK. Trying not to stress over this any more. (good luck with that)
Karen
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In case any one was wondering, I'm still sitting around waiting for a call from the CK center for a procedure date.
Stopped by the center on Monday, they said they were working on the protocol then Dr. Greenberg needs to sign off then they will call me. Figuring that Dr. Greenberg only comes to this end of town on Fridays I suspect I'll get a call this Friday afternoon. (Wonder if that's why I'm starting to get another tension headache, Friday is just around the corner as they say.)
Also, Dr. Bartels is out of town this week, I think, and he needs to be at the first procedure session so that should have been my first clue that nothing will happen till next week.
Will keep you all posted. :)
Karen
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Hello again Karen
Friday is sooooooooooooo soon! Are you prepared for the call? Breaths in and out dear friend. If you find yourself at loose ends then please do come here and journal your thoughts, email me or someone else, or you could always hop on a plane and come over and do my ironing for me?? :P
You definitely aren't a wimp or you'd be moaning at every turn and you aren't doing that. ;D
I'm not in your shoes but can feel your 'excitement' (couldn't for the life of me think of an alternative word) at waiting and I'm sitting beside you all the way.
Hoping for news of any sort and fingers crossed that it comes before next week.
Kindness and hugs,
Suu xxoo
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Hi again Suu
I'll come do your ironing. ;) Actually, ironing relaxes me, can you believe that? ;D
Had a horrid headache last night but it's either stress and / or allergies. (couldn't be that glass of white wine, right?) I just want to be happy and healthy for my big debut. :D
I'll email you and keep posting. Thanks again for your friendship and support. As others have posted, I could NOT get through this with out the support and friendship of this forum. :-*
Karen
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Finally I have a start date for my first CK procedure!!!!!! :) (I think I'm a happy fate) (oh, what a typo that was - happy face)
Well, I finally decided to get pushy this morning so after numerous phone calls on my part for two hours this morning I finally got a call from the cyber knife center and my first procedure is scheduled for this Thursday at 4:30pm. I'm a morning person so my preference for any of this would be to have it at 8am in the morning but after what it took to get this appointment I wasn't going to push it. My daughter said the only concern she has about doing it so late in the day is who do I call if I have an adverse reaction hours after I get home. So my plan is before I get on that table Thursday is to get names and phone numbers!!!
I wasn't home to take the call so my husband tracked me down via cell phone to let me know. I was out doing "retail therapy"!!! ;D
Any way, it's now on the calendar. I called the cyber center back to ask if I was only having one treatment or three. Lisa said three but she only had a date for the first one which is a little nerve wracking for me especially after what I went through this morning just to get this first one set up. Essentially, my life has been put on hold since last Monday. I cleared my calendar for last week and this week, except for a 10:30am appt on Thursday, and now it looks like I'll have to clear next week's calendar also. The only concern I have for next week is we have friends coming down from NC and 8 of us are going out to dinner Tuesday night and I'm the one coordinating this whole thing. No biggy but still.
So the moral to the post is it pays to shake the tree!!!
Karen
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Finally I have a start date for my first CK procedure!!!!!! :)
So the moral to the post is it pays to shake the tree!!!
Karen
Karen, shake the tree some more! CK is typically delivered in three sessions (sometimes more) 24 hours apart. The fact that you only have one treatment scheduled has me a bit concerned. You don't want to wait too long between treatments or the tumor might have time to recover from the first one. At least that's my understanding. If it were me, I'd want to know the dates for all three treatments before beginning the first one.
Best wishes,
TW
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WTG Karen - Happy fate and happy face are the same thing aren't they? ;D
Thursday is sooooooooooooooo close! Afternoon might be better than morning because you can sleep after it and wake the next morning with a differnt perspective on the little gremlim LOL
Can you update us on what you're doing in the leadup over the next couple of days till Thursday? Pack, unpack, shopping (always a good standby for nerves)?
I'll be here waiting for you as will the rest of this bunch of wonderful bloggers on here.
Hugs,
Suu xxoo
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Karen,
It's good to have so many praying for you! I don't know where I'd be if it weren't for all of you!
Now we have to pray for Karen, God will see her through this, with excellent results!
Mike
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Unbeknownest to me that several of you were concerned that I only had one date and I could not get any information via phone yesterday, I stopped by the cyber center this morning and my second treatment is next Monday (3 days after the first) and the third treatment is Tuesday. I had gone in with the attitude that if they did not have dates scheduled I was NOT going to do Thursday's first treatment. When I first spoke with Dr. Bartels about the treatments he said the three treatments had to be done within ten days.
As was posted on another thread, we certainly have to be our own health care advocates. And, in my case, shake that tree!!!!
I will say I'm a bit concerned with this cavalier attitude from the cyber center and the doctors offices. Thank heaven for this forum and those of you that have spurred me on through emails and PM or I'd be just sitting here letting fate take its course.
Thanks everyone for your prayers, wishes, and especially your solid advice. I'll keep posting as long as I can sit up to reach a keyboard.
Suu - as to what I'm doing before my procedure. Yesterday I did lots of retail shopping then was trying to find a drawer to put the new clothes in and low and behold I found a whole drawer full of clothes I had totally forgot about. :D So washed those last night. Also, went to the gym for 2 1/2 hours yesterday. Today all I've done is go grocery shopping and I'm trying to work up the energy to clean house just in case I have none for the week end. Eating healthy, having a glass of red wine at night. Tomorrow plan to do my normal 2 hours at the gym and Thursday I have a pedicure appointment in the morning. :D Want that french pedicure to look good while I'm laying on that table with my toes sticking out the end of the blanket. ;D (that'll never happen, I'm too short)
Karen
P.S. I don't know if I'm just tired or getting depressed or what but I sure do not have any enthusiasm for doing anything now that I have all the dates set.
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Karen,
I just have read your post now at 3:35 pm. You must be exhausted from all that stress and activity! Do yourself a favor and try to nap if possible or do some active breathing exercises with your feet up!
I cannot imagine the stress you must have been under (just like a receptionist not to understand, sometimes I just wish the dolts that delay us would experience a tenth of the frustration that they dole out)!
For now RELAX......RELAX......RELAX and trust in God that you've done your level best to see that you receive the best care, the rest is in HIS hands!
Your friend,
Mike
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Karen,
I'm glad you have all three dates sets. You will have to keep us updated, if you are up to it, as you go through your treatments. It sounds like you keep yourself very busy. No wonder you are tired!!
Lisa
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Karen - the set date makes it real. I reckon I've asked in every second post on this wonderful site that deep breathing is relaxing, emailing any one of us is refreshing, and above all look in the mirror and smile.
Guess what? You have my permission to not do anything! You can print that out and show your family that you have a note stating that you are off the clock and will not be doing a single thing for as long as you don't want to. :D
Your guts has been right up to now and rely on it to get you through to the other end of this little hiccup in life.
Love and hugs dear friend.
Suu xxoo
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I stopped by the cyber center this morning and my second treatment is next Monday (3 days after the first) and the third treatment is Tuesday. I had gone in with the attitude that if they did not have dates scheduled I was NOT going to do Thursday's first treatment.
Hi, Karen:
To my knowledge, Dr. Chang always performs CK treatments 24 hours apart from one another. The fact that your second treatment is scheduled 4 (not 3) days after your first, but the third treatment follows 24 hours after the second, seems to me to be a result of scheduling convenience on the part of the medical facility. If it were me, I'd ask your doctor if it would be optimal to have all three treatments completed within 48 hours (24 hours lapse between first and second and between second and third treatments). With all the other poor communication to you that you've reported with this institution, I am nervous that your care is not being given first priority (over scheduling ease).
You want and need a successful outcome (tumor control). Please make sure every aspect -- including scheduling/staggering of treatments -- is being lined up in your favor.
Sincerely,
TW
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OK, I'll be back on the phone again in a couple of hours asking why these appts aren't all three back to back.
Sorry to say but my first thought was that Thursdays first appt was either created for me or they pushed someone else out of that spot because I had called everyone on my list Monday morning.
This is why I (we) belong and are grateful to this forum. Thanks everyone. Keep mentoring me and I'll get through this.
Karen
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OK, I just sent an email to Dr. Bartels, left a message for the surgical coordinator, and did speak with Dr. Greenberg.
According to Dr. Greenberg, with slow growing / no growth schwannomas you do not need to have treatment back to back. He actually prefers to do every other day. So I didn't get a chance to question it (he had basically finished the call & disconnected) but then why is my 3rd appointment exactly 24 hours after the 2ND one. I'll have to ask that question tomorrow.
I'm just telling you what he told me. These doctors are either going to wish they never took on my case or respect me for being such a pest. ;)
Karen
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These doctors are either going to wish they never took on my case or respect me for being such a pest. ;)
Karen
They should respect you. This is your body, your future, your life. And incidentally, you're giving them hundreds of thousands of dollars worth of business. If you feel they think you're a pest, cancel and go elsewhere. Remember, treatment isn't the end of the process. There are years of followup MRIs, audiograms and so on. They should be making this easy for you.
Best wishes,
TW
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Karen,
Way to go follow your gut! Trust in God that you have made the affirmative decision to treat, He will handle the rest!
A pleasant outcome to your difficult AN journey we all are wishing you! Get some good sleep tonight (5/2/2012)!
You're on your way towards healing!
Mike
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Yesterday received many encouraging emails and posts from friends and phone calls.
Slept well last night. I'm over the crying (for now) so plan to do as little as possible today.
I'll keep you all informed. I have a feeling that this is not going to be as bad as my imagination made it out to be yesterday. ;)
Thank you all again for your encouragement and prayers, they are all needed.
Karen
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Go forward Karen,
We here on the forum are with you in spirit as you enter CK treatment today May 3, 2012 at 4:30. Let go and let God! Trust that you have followed all the steps! Congratulations! Sleep easy our friend! You are about to start the long road to recovery, may it be smooth and seamless!
Mike
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Everyone,
Happy second day of treatment Karen, your friends on the ANA forum hope that you are doing well and are rooting for you by being prayerful and sending healing thoughts your way!!!
Mike
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For those of you following this thread here's my post I just entered under Radiation. (sorry I have no clue how to put the "links" in. This is also under Radiation titled CK - Ond down, two to go!
It wasn't particularly pleasant but it wasn't absolutely horrible which is what I feared.
One down, two to go!
I’m alive and my head didn’t explode, that’s the good news.
Before the procedure I spoke with Dr. Greenberg. I asked what I might experience. He said most likely nothing! May have some swelling but he did not want to give me meds for that unless absolutely necessary. He also said that a few months out I could loose some hair in the area of the radiation behind my ear. He also spoke briefly about mild facial paralyses which should / could / would resolve itself.
Also spoke with Dr. Bartels. I told him that Wednesday morning I woke up with my “bad†ear feeling totally clogged and having problems hearing. He said if it doesn’t go away to call and make an appointment. I called this morning, got an appointment for next Wednesday since it is getting worse. I don’t believe this has anything to do with the radiation since it started two days prior to radiation.
Now back to the actual CK procedure. It was not the most pleasant experience mainly because of the way they had me positioned on the table with the mask. Thank heaven for Valium! Remember the mask is molded to your face and head with you laying flat on your back looking up towards the ceiling. The radiologist had first set me up that way yesterday but then came back in the room a few minutes later, removed the mask, told me to turn my head slightly to the right then put the mask back on me and screwed it down to the table. Now my chin on the right side is very uncomfortable and my brow bone on the left side is very uncomfortable besides the fact that the entire mask is extremely tight. About the time I thought I couldn’t take it any longer the radiologist came in to tell me the first treatment was over. Thank heaven!
When I went out to the waiting room my husband said I had “cyberknife waffle faceâ€! The mask had actually left impressions all over my face. Truthfully, I’m surprised my chin and brow are not black and blue, that’s how tight and uncomfortable it was. Dr. Greenberg asked me if I watched the whole thing. I told him I couldn’t get my eyes open in the mask. He seemed surprised. Obviously, he’s never had this done! You know doctors should “sample†what their patients experience; just my humble opinion.
As for the actual radiation, I couldn’t feel anything. The machine hummed, clunked, and made other noises but that was it. I took a CD that I knew would play for at least an hour, which was very soft, calming music for me. I laid there, did breathing techniques I’ve learned from yoga classes, and thought of all the great things I’ve enjoyed most in my life. That seemed to work to keep me still for 40 minutes.
On my way out, I asked Dr. Greenberg if I could take aspirin, which he said was fine. The back of my head hurt. Don’t know if that was from how I was positioned on the table or was actually from the CK treatment.
As to how I feel today. I’ve had mild queasiness in my stomach, I think my vision is some what blurry but clears up (spoke with Dr. Greenberg, he said this is probably due to dehydration because the optic nerve was far from where they radiated), the back left side of my head doesn’t really hurt but I’m aware of it (I’m assuming that’s where they radiated) (asked about this also, he said most likely because of the weird position I was in for 40 minutes), and my taste buds are almost non-existent (forgot to ask about this). Nothing has much flavor. Had hot sauce on my scrambled eggs this morning and really couldn’t taste it. So it will be interesting to see how these issues play out after the next two sessions.
I will keep you posted on sessions two and three. Session two is Monday and session three is Tuesday.
Thanks for all your encouraging emails and prayers it was all welcomed.
Karen