ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: wind6 on May 31, 2008, 10:39:26 pm
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Hi All,
Yes, its me...back again finally. I guess I need to explain that last year I began to feel really overwhelmed with the constant battle to recover, the regrowth, the endless doctor visits and the stress that just never seemed to let up. So..I decided to take a one year vacation from my AN, only seeing doctors when absolutely necessary. I don't know if this was wise or not..I just know it was what I needed to do for me. I just wanted to "live" for a year and sort of pretend I was never ill.
My year has been wonderful in some ways. I have to share with you that I focused much of my energy into school. I am now three classes short of my BA. A couple of weeks ago I was inducted into Alpha Sigma Lambda (an honors society for returning adults), my GPA is 3.75 which means I will be graduating with honors!!! Not only did my brain survive 12.5 hours of surgery and a tumor regrowth, but I can actually graduate in the top of my class. I have more good news too!!!
The Illinois Dept. of Rehabilitation has helped me with my return to school. I was given a counselor to help guide me and to help me with any special needs I might have had along the way. Originally the plan was for me to get my BA so I could qualify for a job that was doable post AN surgery. Well, my counselor called me in for a special meeting two months ago...on the way I was wondering what on earth I could have done wrong. I was pleasantly surprised to find out the department of Rehabilitation is interested in hiring me!!!! They think I would be an inspirational counselor to their other clients with disabilities. The year of focus on my grades had an unforeseen benefit. :o This means that as soon as I graduate from Eastern Illinois I will begin work on my masters degree at University of Illinois..(I'm a wee bit terrified of that huge school) My counselor and I signed a contract...they are covering all of my financial needs for my Masters and I will start work with them in two years...and the wage offer is way beyond what I had ever hoped for!! Who could have ever thought that a brain tumor would bring to my life a degree of success that I had never even dreamed possible.
Now..I want you all to understand that I am very excited and very hopeful, but...and as life will often do...a but has been thrown at me...I saw my doctor last week, had a new MRI. My AN is now 13mm x 8mm x 5mm. :-\ My obvious dilemma is wondering just how far I can push. I suddenly feel like I am on shaky ground again. I worry that the Dept. of Rehab will have second thoughts if I tell them about the latest medical news. Do I tell them or just keep moving forward and hope everything works out okay? I had so hoped there would be no change or maybe even some sign of shrinkage. Do I go back to that attitude where I am convincing myself that I am unstoppable or should I settle for a lessor goal and try to get financially stable sooner...even tho it would be with much less money? I don't know if I need answers or just someone listening that understand how insecure it feels to wait and watch.
I also wanted to add that my facial paralysis has almost completely resolved now. Those of you who wonder about length of time for recovery..I say stay hopeful..it took a really long time and lots of patience, but I have come back from total paralysis to barely noticeable in the past three years. I still fight with the dry eye problems and my doctor is debating removal of my gold weight. It is too heavy now and causes my eye to droop when I get tired. I still have some balance issues. I don't know if that is left over from my surgery or if its a problem caused by the re-growth. Either way..I am enough better now that I can finally walk in heels again.. :D Who knows..maybe in another month or two I will dance in those heels.
Much Love to you all,
Sherry
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Hi Sherry,
First of all, I have to say that is a great story. While it might seem to you that the AN caused all that, you are going to have to take some of the credit yourself. Nice going!
Second, it seems to me that if your first AN got you a 3.75 GPA, Alpha Sigma Lambda, graduation with honors, a signed contract for a job with the Dept. of Rehabilitation, and enrollment in a masters degree program at U. of Illinois, why then a second AN is bound to get you a PhD and the director's job!
Your second AN is still small, and 4mm isn't that much growth. I would suggest considering having the regrowth radiated; not only would it mean less interruption to your new career, and fewer side effects, but it would make you an even more well-rounded AN patient, and therefore an even better and more inspiring counselor. Plus, you would get to have the title "postie-toastie", the name Jim has concocted for those who do both surgery and radiation. :)
I really don't see the regrowth as a major hurdle for you or the department. It can be dealt with, one way or another, and it won't cause as much havoc as your bigger first one did. At this point, it is just some additional follow up, not a new condition.
I have read your account again, while writing this post. It really is a delight to read, and a wonderful development. Congratulations on your accomplishments.
Steve
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Hi Sherry: Congratulations on all you've accomplished post AN - it amazes me ! !
I echo Steve's response re: radiosurgery, but of course it's your decision.
As far as telling your employers, that's a tough one - I personally would wait to tell them until I knew what my plan is in dealing with the AN,
then let them know b/c at that time you'll also tell them your plan.
We can't know how they will react, but it seems to me since they're smart enough to know to hire someone who has been through the AN journey (also graduating with such high grades post AN - those qualities of strength & determination are what they want in a counselor), they'd continue to support you in dealing with a regrowth.
Again, congratulations ! ! & always good thoughts, Nancy
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Oh thank you, thank you. I will be heading out to Springfeild in a couple of hours so I am hoping my team will give me good answers. :)
I have one great big concern with radiation. My tumor is actually a facial nueroma. My nuero doctors have told me the chances of totally losing my facial nerve is much higher this way. They are leaving it up to me. The problem apparently is that the radiation will be targeted directly at my facial nerve.
I will discuss it more today. See where it would be done and maybe make an appointment to talk with that doctor too.
It feels so good being in here again. ;D
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Sherry,
I don't know about the facial neuroma aspect. I think it would be a good question for the cyberknife doctors, who answer questions posted at this link:
http://www.cyberknifesupport.org/forum/
In fact two doctors there, Dr. Chang and Dr. Medbery, will often do a free evaluation of your MRI, if you can mail them a copy on CD. Their information is here:
http://www.cyberknifesupport.org/about_the_doctors.html
The facial nerve is usually considered to be less sensitive to radiation than other nerves, so I would be surprised if a facial neuroma can't be treated successfully.
Welcome back. :)
Steve
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Hi Sherry:
I am with Nancyann
" Congratulations on all you've accomplished post AN - it amazes me too! !
Good luck on your future decisions.
eve
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then a second AN is bound to get you a PhD and the director's job!
Gosh Steve, I had not thought about this...hummm...boy are my wheels turning now!! ;D
Thank you for the links too.
Nancy and Eve..thank you. I hope all of you know how much you inspire me. So many times when I thought I couldn't make it through this board and the encouragement of the members held me together and helped me take the next steps. There have been times when I gave up on me, but the people here never did.
I got really good news today. My doctors said I can spend another year just like the last. He told me to do everything I want to do with no holds barred!! If I become symptomatic, then I will have to recheck earlier..but for now I don't have to go back for another year. He told me to go ahead and finish my BA and start my Masters..He told me there is no need to say anything to the Dept yet..YEAH!! and the last bit of good news is...even with the re-growth my face has improved enough that he feels the gold bar needs to come out...Can you say MAKE_UP!! :D I have surgery set to remove this extra weight on June 27th. I suppose I will need to hang out in the eye forums and try to get a better understanding of what this is going to be like.
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Hi wind 6
Oh, You are going to enjoy that heavy gold weight out. I really was tickled that it was out.
I had the Dr. Shriner take mine out and I didn’t feel a thing. He was so gentle. He was the 1st ENT doctor that found my AN but he did not have the skills to remove the it.
Good luck with your future. You are one luck Lady!!!
eve
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Hi, Sherry:
Thanks for a great post that I wish every AN patient could read...and please accept my congratulations on your major achievements. Good job!
Your post-op successes are clearly inspirational and certainly a testament to how one can forge ahead in life, despite obstacles, following AN surgery. That much of the success is based on your own hard work is a testament to motivation and determination on your part. I think that your 'ignoring' your AN for a year and doing what you wanted to do was a splendid idea that has paid off well.
While it's unfortunate to learn of the apparent re-growth of your AN, I agree with Steve that it's certainly small enough to remain in 'watch-and-wait' (observation) mode, as you plan. The fact that you're having the gold eye weight removed is really good news. I'm sure this will buoy your spirits for some time. Enjoy using mascara and eye shadow again. :)
It was refreshing to read that this site and forums have been instrumental in helping you through your AN-related problems. That is why we're here and to see that we've been instrumental in helping AN patients like you not only cope but succeed, is very rewarding. Thanks again for sharing your good news and encouraging story with us. May your future remain so bright that you'll need sunglasses. :)
Jim
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A couple of weeks ago I was inducted into Alpha Sigma Lambda (an honors society for returning adults), my GPA is 3.75 which means I will be graduating with honors!!! Not only did my brain survive 12.5 hours of surgery and a tumor regrowth, but I can actually graduate in the top of my class. I have more good news too!!!
The Illinois Dept. of Rehabilitation has helped me with my return to school. ......Well, my counselor called me in for a special meeting two months ago...on the way I was wondering what on earth I could have done wrong. I was pleasantly surprised to find out the department of Rehabilitation is interested in hiring me!!!! They think I would be an inspirational counselor to their other clients with disabilities.
Who could have ever thought that a brain tumor would bring to my life a degree of success that I had never even dreamed possible.
Sherry
Awesome chain of events regarding school and the job...Congratulations on that.
Regarding whether or not to say anything, consider seeing what happens to it over the next twelve months. Honesty is the best policy at the right time. Right now your doc said to do everything you've done this past year...Hmm...will he pay for the second degree<grins>....
Kate
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What great news Sherry. It sounds like your doctor has a great plan. Sounds like you got an answer to your questions. I am so glad for you.
marg
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Hi Wind6! Your an inspiration to us all. Keep up the good work you are something very special. God Bless, Mickey