"Hi! I was 29 when I was diagnosed and underwent emergency surgery. I am a Speech-Language Pathologist so I truly understand (from both the therapist and client perspective) how difficult this journey can be. Are you seeing an SLP to address the…"
It's Just Benign: Connecting Benign Brain Tumor Survivors Everywhere
Amanda's Groups
-
Dating Dilemmas
11 members
-
Migraines
12 members
-
Religious Discussions
18 members
Amanda's Discussions
Upcoming MRI...
3 Replies
My next MRI is in August (I go every eight months) and I am already beginning to feel the fear creep in.... I am a posiive person and have really focused on how well things have gone so far, how I…Continue
Started this discussion. Last reply by Amanda Jul 6, 2011.
Fatigue...so tired of it! HELP!
9 Replies
I am looking for any input about dealing with fatigue. I am three years post-op and want to know if this is typical (is this my new normal?) I am now taking vitamin D, fish oil and wheat grass. Help!
Started this discussion. Last reply by Kim Repsha Mar 22, 2011.
Book-"I had Brain Surgery, What's Your Excuse?"
3 Replies
This is a great read about a published author/artist who underwent brain surgery. Easy read, lots of laughs! Its available on Amazon on the IJB site.
Started this discussion. Last reply by Amanda Mar 21, 2011.
Denial
5 Replies
I had my regular eight-month follow-up and everything appeared stable! Huge blessing! Sometimes during/after these stressful appointments I feel almost as though I am watching someone else's…Continue
Started this discussion. Last reply by Hope Feb 7, 2011.
Amanda's Page
Latest Activity
John left a comment for Amanda"Thanks Amanda. The day spent was a quiet one, but even my birthdays are the same!"
Amanda left a comment for John"Hi John! Congrats on your tumor-versary! Do something (even if it's something small/silly) to celebrate you!!!!! "
Beth Rosenthal left a comment for Amanda"Hi Amanda. Just want to say hi. How are you feeling? I hope well.
Things are OK here. I'd love to chat with you sometime. Give me your number.
Gotta get going.
Thinking of you,
Beth"
Amanda left a comment for Nikita Volkova"Hi Nikita! I read what you are hoping to gain from this site and I want you to know that you can make it through this, moment by moment, and still maintain some sanity. I know you must be scared and overwhelmed. I am almost four-years post-op and it…"
Amanda commented on Paul Gerrard's blog post surgery,was it worth it?"Hi Paul! Mine was emergency surgery so I don't know what it would feel like to wonder if you made the right decision...but I can relate to trying to find any kind of "normalcy" post-op. Trust yourself-you made a difficult decision in…"
John Kerastas commented on Amanda's blog post Setbacks, Comebacks and Taking a Step Back...."Thanks for the tips - I'll look them up!
John"
Amanda commented on Amanda's blog post Setbacks, Comebacks and Taking a Step Back...."Hi John! I think my two favorites have been, "The Way of Transition," by William Bridges and, "Heaven is Real," by Don Piper. These are the two that I find myself returning to the most! I am also loving reading/listening to…"
Amanda replied to Beth Rosenthal's discussion Dues and others issues"Hi Beth! I plan on continuing to donate as I am able! When I think about what this site and its members have done for me and my recovery, I am beyond grateful! Before IJB, I felt very isolated. It has been so healing to connect with others and now,…"
John Kerastas commented on Amanda's blog post Setbacks, Comebacks and Taking a Step Back...."I'd be interested in what books you've read on "transitions"."
Amanda posted a blog postSetbacks, Comebacks and Taking a Step Back....
I am truly blessed. I am alive, I am doing what I love and I am healing each day. I will celebrate my four-year tumor-versary in March! I have had a few setbacks recently...a couple rough tests, a few difficult appointments. I usually have a process...it's only two steps, really...#1-Have a setback, followed by #2-Plan my comeback. Over the last year, I have been tirelessly seeking to understand this "new normal." I have read some amazing books about transition. I have read inspirational…See More
Amanda replied to Candy Wilson's discussion I was just told I need surgery...feeling overwhelmed."Hi Candy! I had energency surgery so I don't know what it would feel like to have to mentally, emotionally and spiritually prepare for surgery...I will tell you what I know to be true....you are stronger than you can even imagine....the body is…"
Amanda replied to Ralph Hill's discussion update - 2 years (almost) post radiation"Hey Ralph....so sorry to hear the news...will keep you in my prayers. "
Amanda commented on John Kerastas's blog post Brain Tumors and Gratitude"Such a great topic! There's a quoate about never apologizing for you feelings because it's like apologizing for your truth-I love that! I think we can be grateful and still feel the losses we continue to endure. In the beginning I almost…"
Profile Information
- Who are you?
- Survivor
- What type of tumor do/did you have?
- Choroid plexus papilloma, grade I, fourth ventricle
- What kind of info do you want from this site?
- Support for dealing with the long-term effects of surgery/recovery (emotional/physical.)
- What state or country are you located in?
- Washington
- How did you find itsjustbenign.org? Please be as specific as possible.
- Was looking for brain tumor support groups online
Amanda's Blog
Setbacks, Comebacks and Taking a Step Back....
I am truly blessed. I am alive, I am doing what I love and I am healing each day. I will celebrate my four-year tumor-versary in March! I have had a few setbacks recently...a couple rough tests, a few difficult appointments. I usually have a process...it's only two steps, really...#1-Have a setback, followed by #2-Plan my comeback. Over the last year, I have been tirelessly seeking to understand this "new normal." I have read some amazing books about transition. I have read inspirational… Continue
Posted on December 21, 2011 at 3:49pm — 3 Comments
Finding Contentment in this "New Normal"
I know that I am blessed...I almost lost my life and yet, three years later, here I am. Walking, working, rebuilding. I am grateful each day. I am also learning how to deal with the emotional "aftermath".... The area in which physical therapy, vestibular therapy and medical doctors fall a little short. How do I find me again? The new me. The one that lost herself that day in the ER. My parents have been incredible. Some friends have been amazing, but I lost many. Those who could not fathom the… Continue
Posted on September 5, 2011 at 11:23pm — 5 Comments
Comment Wall (20 comments)
- At 5:18pm on February 18, 2012, John said…
Thanks Amanda. The day spent was a quiet one, but even my birthdays are the same!
- At 11:39pm on January 28, 2012, Beth Rosenthal said…
Hi Amanda. Just want to say hi. How are you feeling? I hope well.
Things are OK here. I'd love to chat with you sometime. Give me your number.
Gotta get going.
Thinking of you,
Beth
- At 1:30am on November 12, 2011,
Iva Lovrec Štefanović said… hey, my first diagnosis was "choroid plexus papilloma" or "ependymoma".. on MRI 3T /on CT after the car accident they thought it is "just" calcification of choroid plexus.. let's keep in touch.. it is 1,5 yrs now from my op.. I have MRI in Feb.. My surgeon is genius DR PALADINO from Rebro Clinic in Zagreb.. he managed to get the tumour all out.. I am ALL in work, work.. workin more than ever - since there is NO MORE PAIN - no more headaches that were CONSTANTLY there for more than 15 yrs.. now it is just occasionally mygraine (but I take maxalt and it's over in minutes... ).. take care.. let's keep in touch.. all the best, iva
- At 1:35pm on September 12, 2011, Jan Gelman said…
- Amanda, wow! It sounds like you have been on quite a journey. That is so great that you are and have been in the care of UW. Who is your surgeon? I hope you continue to have the small victories - I am cherishing each one that I have. And yes, it feels good to be up and doing things this soon, though I still have to manage myself not to try TOO much. I am dipping my toe back into work this week. Luckily I work for myself so I can take it slowly. All the best to you!
- At 3:38pm on September 7, 2011, Jan Gelman said…
Hi Amanda,
Yes, I am in Seattle and also went to Harborview/UW. Who did you work with there?
It sounds like your journey is long and challenging. I am sorry. I feel blessed to have found my tumor early and even though I'm only a few weeks out of surgery, I am hopeful and feel more like myself every day. Like you, I have already learned a ton and continue to do so every day.
Jan
- At 8:09am on July 7, 2011, Christine said…
Hi Amanda, thanks for the note. It came at a perfect time. I faxed my MRI report to John Hopkins yesterday, which the lady I spoke with said would be reviewed in 72 hours. I then would hear back with them and should have an appt. scheduled for the week after the call. My local Neurosurgeon can't see me until August 4th and that was scheduled a week ago. Needless to say all I can think about is this thing in my head. My headaches have been very tolerable, but my patience level has not. One minute I am enjoying my kids, the next minute I am snapping at them or ready to run away. I actually have been experience these emotions for a long time, but have had a hard time keeping them at bay recently.
Anyway, enough about me. I know that once I focus on what is bothering me for awhile and get to the point that I realize I can't change it I usually go find something else to do. It may not be to productive but it takes my mind off what I can't change........hope that helps when it comes to the fear of your next MRI creeping in :).
- At 6:34am on April 19, 2011,
Eric J. Roetter said… - Amanda
Thanks so much. I had my tumor completely removed almost 6 weeks ago. I am currently experiencing short term memory issues. I have a follow up ct scan and neurosurgeon today and a neurophysiology appointment next week. I also have to meet with a speech therapist in the next couple of weeks as well. I will update everyone soon
- At 8:23am on April 14, 2011,
Kim Repsha said… - Work was good Amanda. Thanks for asking. My doctor only wants me back part time too so I am doing M,W,F for now. It's amazing how much I do with my left hand because it is faster, but I really need to build the stregnth up on my right side. I am righty afterall. I am a little slower, but not bad. Monday was fine. Wednesday I was very tired going to bed by 8:00 and not waking up until 9:00 the next day. We'll see what Friday brings!! I'll keep you posted. Thanks again for asking!!
- At 6:53am on April 3, 2011, Amberly Wilson said…
Hi Amanda, Thanks for the encouraging words. I will definitley keep in touch and my prayers go out to you and your family as well. Some days trusting my family is the thing that keeps me holding on.!! Thanks again and will type to you soon.
- At 8:39pm on April 2, 2011, Amberly Wilson said…
- Hi Amanda. I am so glad that we share some feelings. Definitley agree that what I considered "Normal" before has changed!! Not sure that is all bad. I have definitely learned to appreciate life and family more. I was amazed what I took for granted prior to this. One thing I have issues with is guilt because I feel as though I put my family through pure misery. I know I didnt have control over this but I cant help feeling this way. I have talked to my family regarding this and they all say the same thing " You didnt cause this so why do you feel guilty? We are glad you are here!!" The question still remains.This is almost like survivor guilt. This is one of the demons I am battling right now.
© 2012 Created by Beth Rosenthal.
Powered by
