Post-Radio treatments..... how to stay mentally strong?

[ppearl214]

Hi all,

I wasn't sure if I wanted to post this here, the "Post Treatment" or in the "Cognitive/Emotional" Forum but since this is solely noting for post-radio treatment, I've opted to put this here.

Over the many years, I have spoken and seen much written by folks that just endured one form or another of AN radio treatment (any of the radio treatments, CK, GK, FSR, etc).  Also in my talks to those that contact me (either by the WTT list or via email), there are many that note the post treatment issues, but mostly physical in nature (ie: edema, diminished hearing, balance issues, etc).  What is rarely discussed is the post treatment emotional ride of waiting out the treatment results.

Many times in my discussions with potential radio-patients, I will sometimes bring up the reminder that folks have to have an extreme amount of mental strength to wait out the ride.  Sometimes, I have to remind folks that things may crop up that we are educated to look out for that could/could not occur.  But, many folks tend to forget about the emotional impact of post-radio. 

The waiting game post-radio is not easy.  It is not to be brushed off.  Many have the mental strength to wait it out... many don't.  Unlike the microsurgical approaches to AN removals, with radio treatments, we don't have "instant results".

So, for those researching radio treatments (or for those that just recently endured radio treatment)...... maybe the "veteran" radio patients here can share how they waited out the journey post treatment.  What got you through it, when we jumped at every twinge (not all to be ignored, of course!)?  How did you withstand the mental waiting game?

For me.... as many know, I have a great deal of mental strength... but trust me when I say that there were many days that I sat back and said "I'm tired of the wait, I want the sucker done with now!".  I had the love and support (and still do) of those family and friends that helped feed me positive energy and cheering me on, reminding me that I have done what I believed to be best for my situation and to have faith and courage to forge forward.  They let me cry (I certainly earned that right) if need be...... I tried to switch my focus to other things (ie: I was planning my wedding immediately post-CK, thus, I was able to easily put my focus elsewhere... the wedding occurred 6 mos post CK).  I tried to remind myself to forge and move forward with my life and have faith in the "man upstairs" (or woman upstairs, depending on your  point of view....) that the end result will be what is chosen for me.

So, this thread is to share with all potential and recent radio patients that you can draw mental strength for the post treatment waiting game through us... and for the "veteran" radio patients to share ways to deal with the waiting game.

Hang tough all. No one says the waiting game and what may come along with it is easy..... but, you CAN do it!  Hang in there! We're here for you!

Phyl

[Sue]

Interesting thread, Phyl.  Don't know if I'm going to address your question correctly, but here goes:

  I must be a dim bulb or something, because haven't really gone through any tough times between MRI's.  I think it's because those first few weeks after my GK, I knew I had a medical treatment.  I felt it!  I suffered a bit for it.  So, I knew that my AN was hit hard with those beams of radiation and was writhing in agony and dying.  I had no medical proof of that until later MRI's, but I guess I figured that nothing could live through that onslaught.  If that rotten little thing manages to survive the blast it got, then I'll be surprised.    

It's hard to ignore the little b*****d, because my poor ruined hearing nerve is singing to me all day long, and my hearing is messed up, and many other stupid symptoms linger.  That's what gets me down at times.  Then I try to remember that I'm very lucky.  And out of a host of other medical problems that this world dishes out, I am luckier than some.  My mother went through breast cancer in her 30's and died when she was only 40 years old, and my father had polio when he was a kid and ended up with one leg amputated.  I come from a long line of sick people! 

I guess my advice for newbies going through this is to remember that worrying gets you nowhere.  Your team did the best that it could and now it's time for nature to do the rest.  There are very few failed radiosurgeries, or at least that's what I've heard.  You just have to go with the odds.  Just try to live your (new) normal life, get exercise, eat right, do something interesting, engage yourself into a fun hobby, get involved with something outside of yourself and then you are not apt to dwell on symptoms and outcomes and then time passes more quickly and another MRI is under your belt and results are in and the brain booger is turning up it's heels and everything is right with the world.   It gets tiring to always feel sorry for yourself or to worry so much about this, so you have to focus on something outside of you, or you'll go BONKERS!  STARK RAVING BONKERS.  What did one of the gals say, that I loved so much....something about running down the street nekkid and screaming......  I loved that phrase.  Sounds like good therapy to me!    Maybe we should instigate a Running Down the Street Nekkid and Screaming Day.

Okay, going to go and do ironing! 

Live Strong, as Lance says.

Sue in Vancouver USA

[Sheryl]

OMG - you must have started this thread just for my hubby!!  What a mental (and physical at times) roller coaster ride the past year post CK and it's not over yet.  Recent (first year anniversary) MRI has gotten different reviews from good news to not so good news.
We're hoping it won't delay us "snowbirds" from getting out of this cold place.  Awaiting opinions from two other docs.  I really have no good advice for "staying mentally strong" as we have other medical and family issues going on, and I'm looking for answers too.  I guess we do feel better when we keep busy but there's always that morning when I just want to pull the covers up and not think about anything. 

Phyl - thanks for starting this thread - should prove interesting and helpful.
Sheryl

[GM]

Great thread! 

"Zappers" don't get instant results, in some cases (like mine) the tumor grew a bit more.  Then comes the stress of...OMG...what if I made the wrong decision and they have to operate...will it make me worse?   Then comes the annual MRI's...man do I hate them.  One of the worst parts is people ask me "well didn't you have that fixed?"  Like I had a 60,000 mile tune-up or something. 

I never knew that I'd learn to read my own MRI's...and I have to say that has saved me from getting further treatments and a possible operation.  I asked a lot of questions...and wanted to kow why my measurements were different from the docs.  It turns out that these tumors when measured in CM3 have a wide variance in measurement...as do measurementsd from different radiologists.    Stick to your guns...ask questions...lots of them. 

Anyway...how do I deal with it.  It's tough.  I have put off applying for jobs and buying a house for the fear that one day i might be unemployed from this AN...that one MRI might show something that is cause of concern.

Then I realized...aren't we're all in the same boat???  Don't surgery and watch & waiters go through the same thing?  Was that scar tissue on the MRI or did it cone back?  Did it grow from last time or is it the same?

For "Zappers" the real stress comes from the unknowing of will a re-treatment be worse or will I lose my hearing.  For a while I did the "what was that" over a twitch of the eye...or OMG my tinnitus is higher today. 

For me it comes down to no matter what I know I made an informed choice and would do it again.  Personally I've turned it over to the Lord to deal with...because it's too big for me.

I hope this helped.... 

Gary

[ppearl214]

Sue/Sheryl/Gary, you words are SO very on the mark! Thank you!  You have all hit a major nerve in this discussion, esp. about the follow up MRI's.  I have felt the immediate anxiety ... prolly a week before the MRI schedule date/follow up appt...... and ask myself the same questions as you note.  Has it grown, has its growth been stunted, will there be any more enhancement in the films, etc?

Gary, you note it perfectly (IMO) about turning it over to the higher being to handle as it can be too big for us to handle.  Like you, I believe that the higher being will dictate what the outcome will be.... which helps bring me peace of mind..... but I also remind myself (as well as others that surround me in life) that I have done what is best for me, at my own free will. Whatever the outcome, it is by my choice.

Looking forward to others sharing as well about how they stay strong during the waiting game after treatment.  What remedies are there to help us wait it out?

Thanks all!
Phyl

[macintosh]

Glass half empty: Okay, this is terribly cliched, but it’s true, so I’ll just say it. When I had AN treatment at Shands Hospital (U. Florida), there were about ten of us getting zapped that day, so we were all herded, with family members, into a waiting room, with the ten of us wearing our giant head frames. Nine of us were getting zapped for ANs. The other guy told us that he had inoperable brain cancer, and they were trying to slow it down for a few months. The guy was about my age (mid 50s), and I can still see him sitting there very calmly telling his story, with his wife sitting next to him. That was eighteen months ago, so you can do the math.

Glass half full: Eighteen months ago, I was both anxious and irritated about the effect of this thing on my life. I’m a teacher, and I found it annoying when (because of diminished hearing on one side) sometimes I didn’t know which student had said something in a classroom. Now, I tell my students they have to use 10% of their outdoor voices in my class, and when I still can’t tell who said something, I make a joke of it—I stage whisper a student in the front row “Who said that?�, or I just throw my hands up and say, “Okay, I have no idea who said that.� They think it’s funny, and it lightens things up.

What we’ve got is serious, but it is not the worst thing that is going to happen to us. Some day, just like that guy at Shands, we are all going to get very bad news, and a little zap and a 97% cure rate is going to sound pretty good. In the meantime, a little noise on one side of your head isn’t the end of the world. That’s coming soon enough, and I am determined not to give this thing any more of my life than I have to.

Mac

[sgerrard]

I have always liked the engineer's response to the half glass of water question: the glass is twice as big as it needs to be. I'm not entirely sure what that means as it applies to life after radiation treatment of an AN, but I like the sound of it. It somehow suggests to me that having an AN tends to sort out what is really important in your life, sort of like cleaning out the attic.

A year ago, the prospect of waiting around for MRIs, wondering what was going to happen, etc., sounded like it would be no fun - and it isn't. But now I find that I spend more time on things that matter, and don't take it for granted that everything will last forever - since it won't. If I were in Gary's shoes, I would apply for that new job and buy the house; you never know whether you will have a better situation later on.

So I guess my idea for staying mentally strong is to get busy living your life to the fullest. This is the sense in which some have remarked that having an AN has actually improved their life, and I think I count myself among them.

Steve

[ppearl214]

Hey Mac and Steve... with a mighty "thank you", I truly do appreciate what you have shared.... "keeping busy" seems to be a common notation here......

I have this same discussion going on the CK Support board as well:

http://www.cyberknife.com/Forum.aspx?g=posts&t=898

Dr. Medbery is also following along and made the recent notation that maybe the anxiety during the waiting game can also come with "the fear of the unknown"... which makes sense to me.  So, to add to this discussion, although there may not be a clear answer as to how to conquer the "fear of the unknown" (IMO, that is personal in nature and everyone handles it differently), would that be one possibility to learn to accept so the waiting game post-radio is not as mentally brutal on many?  ie: I have learned in life how to conquer the fear of the unknown but many have not. Is there a way to learn how to accept that... so, as we go through the immediate post-radio wait (until MRI's are done and proof of our treatments are known), how do we learn to accept the unknown? 

Has anyone had any form of professional coping treatments so they can share here on how to cope as we go through this?  To me, if one learns how to cope, based on their own abilities, then the waiting game would be not as emotionally draining.

I dunno... just a thought. Need more coffee.
Phyl

[Sefra22]

Thanks for starting this great thread,Phyl. You have no idea what perfect timing this is for me.

Because I had my treatment so far from home, I feel a little cheated that I don't get to have a face-to-face follow-up with Dr. Noren. I have had 2 post procedure MRI's, and I had to wait 2 months after the first one to hear back from him. After the 2nd, I got a 30 second call from one of his nurses with the news that there were signs of
shrinkage. I was never asked how I was doing or if I had any questions.

My PCP is in charge of my follow-up, and she is great, but she is an internist, and admits she really doesn't know much about AN's, and absolutely nothing about GK. In fact, she had never heard of it until I had my procedure.

That is why this board is so important. Everytime I question "Is this normal?", (which is a lot!), I can come here and check the threads. I always feel better after. I found this site right after my diagnosis and it was instumental in my decision to have GK. I don't post much, but I do check the new posts daily.

So what keeps me mentally strong? All of you who share your experience and expertise!

Thanks,
Lisa

[Sue]

I just have this to add:  Mac, I hope you took a photo of 10 people sitting around with head frames on.  That would be something to see.   

Sue in Vancouver USA

[Joey]

Hey - I know I'm just jumping in here, but I had to add- when I was in the GK suite, I did talk to another lady there with a headframe.  I was cautioned by staff not to do that!!  I was surprised, because it was just some dumb pleasantry... me trying to be less tense.  Apparently they have privacy policies- which I was just then made aware of - and we're not supposed to interact.   I had no idea and was frankly a little taken aback.   On another tack, how are we supposed to answer when some well-meaning person says "is your hearing back yet?"   >:(Yeesh, I don't know where to begin and most folks just plain don't understand that it's not instant pudding!  ~~Joey

[Sheryl]

Professional coping mechanisms can certainly help if you hook up with a therapist you feel comfortable with.  What has helped us the most - and most of you are aware of how full our "plates" are (both of us with benign brain tumors, I am a breast cancer survivor, and mother and father diagnosed with early signs of Alzheimer's) - is mindfulness, a form of meditation.  I still have a hard time accepting the comment from a well-meaning relative, "well it's not life threatening".  My response next time will be, "yes, but it is life altering"!!
Sheryl

[macintosh]

Hi Sue--

Wish I had thought of that. They gave us all individual pictures, but a group photo would have been a hoot.

Mac

[jb]

I'm with Lisa... for me, this forum is a great source of mental strength.... AN patients aren't exactly easy to come by, so it's great to have this forum to turn to when you have concerns about those twitches and zappers and dizzy spells and swelling, etc, and see oh yeah, somebody else has had that and they turned out ok, so chances are I'll be ok too.  For me there is invaluable peace of mind from seeing that I'm not alone on this weird little journey.

[Sheryl]

One more hint to keep your "bad" thoughts at bay - wear an elastic band around your wrist and when you find yourself "catastrophizing", snap the elastic band.  If you are out in public, just don't yell out too loudly!!! LOL
Sheryl