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

[Jim Scott]

Maybe it's just me but after undergoing surgery to debulk my large AN, then having 26 FSR treatments, I just expected my AN to begin shrinking and dying...and it dutifully obliged me by doing just that.

I've never feared my MRI scans and have been rewarded with good news each time.  Now, I don't mean to diminish other folk's concerns and the stress that waiting for radiation treatments to manifest themselves on the MRI scan can bring, but I haven't experienced much of that.  Maybe I'm naive or just wildly optimistic.  Well, I do pray about this a lot.  That is probably a major factor in my attitude.  I know all too well that my AN could re-grow but I don't expect it to and I don't fret about 'what if'.  Maybe it's my age or just my disposition but I want to enjoy the years I have left and refuse to waste much time on things I cannot change and that worry won't fix.  Whether it comes from spiritual faith or just personal determination - or a combination of both - I'm pleased to learn that others share that attitude. 

Jim

[windy]

I am kind of like Sue.  I don't think my tumor could dare survive the blast of radiation I seem to have took.  If it did, you could knock me over with a feather!  I am not hesitant really at all about my 6 month MRI coming up.  I just hope they don't see anything else odd in my MRI from the way I have felt post GK.  I feel about 99% confident my tumor will die.  The only strength I need is to face the symptoms I have had post GK and may possibly face in the future.

I still think I would go the radiosurgery route, but the mentally strong part for me has only been the onslaught of post GK symptoms.  I try to think they will all resolve at some point and never to be felt or seen from again!   

[okiesandy]

I have quit stressing at MRI time.  Now I have gone the opposite direction. I don't want to go have an MRI done because I don't like to be reminded about the tumor. I almost never think of it and MRI is just a reminder. Plus othere health issues have sort of blotted out the tumor. They told me it was dead so it is dead as far as I am concerned.

[ppearl214]

I have quit stressing at MRI time.  Now I have gone the opposite direction. I don't want to go have an MRI done because I don't like to be reminded about the tumor. I almost never think of it and MRI is just a reminder. Plus othere health issues have sort of blotted out the tumor. They told me it was dead so it is dead as far as I am concerned.

      

... and like you, many have just moved on in life and try to put the AN journey on the back-burner... I'm trying to do the same.  I know many cannot move along as there are complications/issues along the way, but for those like you and me.... I count my blessings and put attention/energies on other issues that plague us.  You have been sorely missed.

xo
Phyl

[SuzeAN]

Hello,

I haven't been on this site in so long! And today I am home sick with a horrible sinus cold condition whatever you want to call it; its horrible.  And I have noticed that any time I do have a cold or sinus issue that area of my head always twinges.  I had CK done in Oct 2005, and have had very successfully MRI's so far.  Due for another this December, but I always have that anxiety that something may be wrong until I get the report. But for the most part I don't think about it the rest of the year, I do have some hearing loss and am constantly serenaded by the tinitus in that left ear.  As for the MRIs I have been going to the same place annually, and have had the same tech for the past 2 times, and the same doctor read the results; so if that is something you can do that would help with consistency with the MRI report.

Very thankful for CK,
Sue

[goinbatty]

I'll have to admit, I wasn't stressed to have my first MRI post CK, but when the report came I went into panic mode.  Basically it said that is could possibly be a meningioma but due to location, statically it was likely AN.  After being told for a year that is was AN and undergoing treatment, the mere thought it could be something different was extremely stressful.  The next MRI showed the necrotic center so I haven't thought about it too much since.  I have a feeling I'll be a bit nervous come next MRI in February.  Hope not. 
Sandra

[pearchica]

Phyl and gang: this is a great thread.  How do I stay mentally strong?  I really believe it's my DNA at the end of the day. Both my dad (deceased) and my mom have good mental health. I truly believe I inherited this gene from them. Also I have had family members die in the past so I think this made me stronger. (sister in a car accident, dad to cancer).  And my girlfriend lost her 5 year old son to cancer. So I think I know what is rock bottom.  And the amazing thing is all these people have survived their grief and managed it and somehow have come out stronger in the process.  So having good role models really helps.  I also have a prayer group (well its really a sisterhood of gossip and discussion post prayer).  This group of women have been amazing to me and a real source of support and inspiration.  And when you hear their problems, it makes your problem seem minimal in comparison. (My family thinks its hysterical that me the doubting thomas lapsed pissed of at the church catholic is in a catholic prayer group).

Getting through the first MRI is a huge milestone. I didn't understand that till after the fact. And I didn't understand how hard it has been for my husband the caregiver.  The last two have been pretty easy.  (And given that I'm at Stanford, I ALWAYS go shopping after the fact!) The last MRI in September set me back $300 in spending! 

I think it also really helps that I have had little or no side effects post CK.  And pre CK the only symptom I had was loss of hearing and some pain in my jaw.  Post CK, I notice this fall that my sinuses are acting up.  I never had the fatigue or headaches that most people have.  So again, I'm really lucky that way and I try to remember that.

And given my cheerleader personality anyways, the most draining part of the process was keeping family and friends informed and staying upbeat for them.  Again, I didn't realize how much I was doing that till after the fact.  (Quite honestly, the family had me in a coffin- not in a hysterical way but in a stoic,shocked way.  I had to keep reminding them "it's benign..".  I think they all relived my sister & dad's death defacto until I had the CK.)

I am very confident with the CK process. I don't doubt that I will be cured. And should I be in the 2-3% range of regrowth, I'm just going to have the sucker zapped again.  My crazy family business as gotten in the way and has made me neglectful of all of you. For that I am sad and apologize- it wasn't my intention, but the farm has just taken up a lot more time and worry then the stupid tumor.  Silly how we reassign worry and stress huh?

Finally this forum is of HUGE help.  Great people, great information. I feel that you are all family and super supportive.  Hope to be more supportive in the weeks to come and get back on track.

Happy Thanksgiving all- you all continue to be my blessings in life. Take care! love always, Annie

[ppearl214]

Hi all,

*bump* as there have been recent inquiries/discussions about this very topic, so the hopes of it helping others that are researching radio-treatments.  Just FYI.

Phyl

[Vivian B.]

Thanks Phyl for posting this. It has been very helpful. I spend the morning reading it although I am at work and should get back to working. It just reassures all of us that we are not alone.

Vivian

[eab]

Thanks for bumping this one up... even in my confident, just been zapped, ready to move on state, I know there is so much more to come.  Great to hear how others perservered!  I look forward to adding my own success story next year!

Beth