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RE: Approaching surgery, thanks all

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  • Mary Lowrey
    Catherine....I don t often post from UK but.....you are so brave. I don t know how you have managed for so long with the awareness of the tumour you have. I
    Message 1 of 16 , Apr 21 4:14 PM
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      Catherine....I don't often post from UK but.....you are so brave. I don't
      know how you have managed for so long with the awareness of the tumour you
      have. I had an MRI for vision problems on 02.03.04 then surgery for a
      petrous angle meningioma on 02.04.04 - tumour size 5cm x 4.5 cm adjacent to
      brain stem. I write to you because you have 3 children - just like me - and
      of simiilar ages. My children are my world and I struggled to analyse how
      much information they could cope with. My 2 sons were 14 and 11, my daughter
      was 13. I told them nothing on the scan day, and then spent some time
      explaining that I had a vision problem which led to me having a scan. This
      was the truth and they knew I was having a scan. I told them the whole truth
      in small segments, eventually saying the word 'tumour' and explaining that
      this meant an abnormal growth. Here, in the UK, people automatically believe
      that a tumour is cancer. My children did not ask me anything which I could
      not answer because I researched everything in advance - even checking
      definitions in dictionaries to make sure I could answer their questions!
      Surgery was scary - big time - and I felt like saying 'goodbye' to my
      children but found it very difficult. I did not want to upset them, yet was
      so scared that I would not see them again. I wrote short notes to thank all
      my close friends and relatives for their support, kept the tone light, and
      posted them on the evening before the op, but I could not face doing the
      same for my children. I bought birthday cards for each birthday for my
      children for the following year, wrote what I wanted in them, sealed them
      and put them away.
      So.......I wrote everything that I felt, thought and experienced in a sort
      of diary while I was in hospital and, immediately before my op, put the
      diary away. I survived.....my children have never read my diary - no-one has
      - not even me - and the cards remain sealed. They were not upset unduly and
      my daughter did so well at school that year that she won a prestigious
      award!!!!!
      They will never know what I went through but they are so well-adjusted that
      one of my sons said, just recently, 'mam, did you have a brain tumour?' I
      said 'yes, I did, but the doctor removed it. There is a little bit left and
      that's why I go to the hospital for check-ups'. He said....'why didn't you
      tell me?' and, when I explained that I did, and he remembered everything I
      had said, he said ' I didn't realise how brave you were'.....I cried.
      I'm telling you this....not because I think I handled it well, but because I
      told my children the truth, bit by bit, and they - a year later - make me so
      proud. There is no perfect way to talk to them and everyone knows their own
      family best - but 'stay strong', the surgery is far easier to cope with
      than the uncertainty and your love for your children will give you the
      strength to conquer this.

      My prayers and thoughts are with you....it is a year since my surgery, and 2
      scans prove that the base of my tumour is still there but stable. I still
      worry - we all do - but I have been fortunate enough to return to work and,
      most importantly, I have been allowed to stay the same 'mam' my children
      have always known. For that, I cannot be more grateful. I pray that your
      surgery is totally successful, that the worry is removed totally, your
      tumour completely excised, and you enjoy a complete recovery.
      Mary



      >From: "Catherine J. Ilson" <CILSON@...>
      >Reply-To: BrainSurgery@yahoogroups.com
      >To: "'oligo group'" <Oligodendroglioma@...>,
      ><brain-temozolomide@yahoogroups.com>, <BRAINTMR@...>
      >CC: <BrainSurgery@yahoogroups.com>
      >Subject: Approaching surgery, thanks all
      >Date: Thu, 21 Apr 2005 09:45:58 -0400
      >
      >Dear All,
      >
      >I have read in awe for 3 years of all the brave people having brain
      >surgery.
      >I was very happy to hear how in most cases it seemed to help extend and/or
      >improve people's life and I got great inspiration from the stories of
      >courageous survivors going through such a scary procedure.
      >
      >I also read to learn anything I could about surgery for the time when I may
      >need the surgery (when the tumor growth was causing more dangerous problems
      >than the language and memory problems that would result from the surgery.)
      >
      >In some way I was also jealous that my tumor was considered inoperable
      >-(what an odd thought, to be jealous not be able to have brain surgery)
      >I know most of you, especially the all "inoperable" people, understand what
      >I mean.
      >I also hoped that some day there would be a way to have surgery without the
      >serious dangerous "side effects" I was warned about.
      >
      >It seems that time is here.
      >
      >After all the searching, and reading on these lists (which is where I
      >learned about the FBTA conference- thank you all) I found surgeons who are
      >confident they can remove my tumor. I also met other survivors who have had
      >great success with these procedures (awake surgery, intra MRI's, brain
      >mapping...) adding to my confidence.
      >
      >I will be having several tests done next week (fMRI, WADA, MRI Spec) and am
      >told that if it all looks as they expect, they would suggest doing the
      >surgery as soon as May 2nd (but I could always delay...)
      >
      >I have gotten some wonderful supportive and informative emails all about
      >the
      >tests, the surgery and the recovery. The information is invaluable to me
      >because of the information starved kind of person I am. The more I know,
      >the
      >more at ease I am. The more I can be prepared - for good or bad- the better
      >I handle things.
      >
      >So I wanted to thank all of you who wrote to me, I know it takes time and
      >energy to write- something we all struggle with- so I want to thank you
      >for
      >the effort and support. It means so much to me.
      >
      >Thanks to all,
      >
      >(I will also add, that the lines are still open, or "keep the letters and
      >calls coming!" There is no limit to the amount of information I am
      >interested in getting!)
      >
      >
      >Wishing you all the best,
      >Catherine (45)
      >
      >(Oligo List facilitator)
      >
      >4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q deletion
      >(6x4.5) L temporal lobe, "inoperable".
      >5/2002: PCV for 6 months;
      >1/2003: Antineoplastons for 12 months;
      >1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
      >Thalidomide,and supplement: Squalamax.
      >MRI's continue stable.
      >1/2005: Stopping all treatment- "wait and watch" (per Duke) except: Keppra
      >(for seizures) and Namenda (for memory).
      >1/2005: Began Neurofeedback training for sleep problems,clearer
      >thinking,and
      >depression. (It has helped!)
      >
      >3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled testing: fMRI,
      >WADA 4/26/05...
      >m/o Alex (16), Kira (15), Jake (11)
      >
      >
      >
      >
      >
      >
      >
      >[Non-text portions of this message have been removed]
      >
    • Patricia Williams
      Catherine – ... I know what you mean about this!!! It’s been my experience that I’ve received the most support from people I didn’t know at all or
      Message 2 of 16 , Apr 22 8:08 AM
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        Catherine –



        Some thoughts, answers, comments about your response:





        >>>>“Amazing how much support you can get from "strangers"”<<<<<:



        I know what you mean about this!!! It’s been my experience that I’ve
        received the most support from people I didn’t know at all or people I met
        on line and had never met face-to-face (yet). To me, we’re like “family”
        because what we have in common is relatively rare. It’s as though we are
        all from earth and have met on another planet... just being from “earth”
        would make us “kin”. (and now that you totally think I’m crazy, I’ll go
        on...)



        >>>>“What can I expect to go through from beginning to end? (Laying in one
        position for 12 hours?)”<<<<



        My experience with this was I was just a little sore (my arm had been
        positioned in such a way that I felt like I had been pitching a ball game
        all night). After the anesthesia and with the pain medications they must
        have given me (since I don’t recall any pain), the first few days are pretty
        blurry. I actually recall the IVs and intravenous meds as being the worst
        part of it all since I have such bad veins and they had to keep restarting
        the lines over and over. Hopefully, the fact that this is my worst memory
        of it should put it in perspective a bit.



        My surgery was also in the left temporal area (also left parietal and left
        frontal). My tumor was a solid mass though, unlike yours. There was a rim
        of brain tissue removed with the tumor in my case to be sure they had
        resected the whole thing. I am right handed, so the left side of the brain
        was involved in speech (if someone is left handed, the right side of the
        brain would be more involved in speech). I’m not sure which you are. I
        mention these items because there may be similarities in my experience to
        yours. No two people, as I am sure you know as a PT, can compare notes
        exactly, but hopefully my experience with this will make this less of an
        “unknown” for you.



        I remember being very confused when I awoke. My head did not hurt. I
        remember people coming to visit me the first day, right after surgery. I
        remember not really trying to talk, but just listening. The second day, I
        remember when I first spoke, it was very monotoned – no inflection in my
        speech at all and my words didn’t come out exactly right. Example: when I
        tried to say “Where is my ______?” it would come out
        “Where...is...me...____”. Difficulty wordfinding and I sounded like a
        little leprechaun because it always came out “me” instead of “my.”



        Each day, I was there a total of 7 days, family would say I looked a little
        better. As the days moved on, I felt clearer with each day. Things were
        like slow motion and it took me a while to do things, but I remember feeling
        very happy. Happy to be alive, happy to be over the surgery, happy to see
        my family, happy about everything. At first, I couldn’t use my right hand,
        so I learned to do things with the left hand. (like eating, signing with an
        X, etc.) One therapist after another would come into the room. Speech
        therapy, occupational therapy, physical therapy. It struck me a bit hard
        that I went from publishing articles on HIV seroprevalence to trying to put
        different shaped pegs into holes. It struck me a bit harder that I actually
        had some difficulty with it! It was hard to think a thought through from
        beginning to end without getting lost somewhere in the middle. Sometimes, I
        would hear a sentence and I would listen intently, but by the time someone
        got to the end of a sentence, I couldn’t remember the beginning of the
        sentence so I missed a lot. But each day this improved. There was a sense
        of “numbness” to all of it, so it wasn’t as difficult as it might seem.





        But, mostly I want you to know that IT GETS BETTER. Every day something
        improved. Gradually, inflection came back into my speech. I went from
        walking with someone holding me up by a strap to walking with a walker, then
        with a cane, then holding onto walls, and now without any assistance.
        Thought processes gradually returned. I am now ambidextrous and use my
        right hand again for most things. My thought processes are not as quick as
        they used to be, but I can keep up and most people don’t realize I’m
        struggling sometimes. In my case, I have kind of forgotten the speed at
        which I used to process thoughts, so I have become comfortable with my
        limitations.



        >>>>“What's the possibility that I won't be able function after and in what
        ways
        and for how long?
        When there is a long "picking and sucking" session in the brain, is there a
        lot of swelling (obvious?) that would lead to ? Pain? From pressure from
        swelling or from the sutures or staples holding the skin and skull together
        back...<<<<

        I made comments to some of this above. As far as pain in my head, I
        remember not being able to lie on that side of my head for a long time. I
        wouldn’t say it hurt, but it was tender to lay on and probably some of it
        was fear on my part. To this day, 6 years after my surgery, I tend to be
        over-protective of this side of my head. If something looks like it’s going
        to fall or something, I instinctually guard that side. Pain at the surgical
        area was not something I felt at all. It did not hurt to have the staples
        removed. The sensation around the incision is still different to me. I
        still have tenderness along the incision, but I can brush my hair, shampoo,
        etc. without any discomfort. There are areas of depression (I call them
        coin holders) along the incision where it feels like someone stuck a
        fingertip into a soft pumpkin or something... But if actual pain in your
        head is a concern of yours, in my opinion, that was a breeze. It’s
        different with abdominal surgery or something like that when there are
        muscles you have to move around the affected area. The scalp is a pretty
        good area for surgery, in a way, because you don’t really use those muscles
        for many day to day activities as you would other parts of the body. As far
        as actual brain swelling, they will most likely start steroids, maybe even
        before your surgery, to keep brain swelling down.



        >>>>"My usual advice... take things one day at a time... be good to yourself
        by
        taking breaks when you need them and not trying to push yourself too
        quickly... be patient with yourself."
        Is good advice I know, I am afraid it is hard for me to interpret it.<<<<

        I’m glad you asked for clarification on this. I didn’t have enough time to
        write in my previous email what I meant and can see it would be hard to
        interpret it.

        Here’s what I mean:

        “take things one day at a time”: This is not like healing from a C-section
        or appendectomy. Don’t bite off a big piece of your recovery and just focus
        on the long term goals. You will be recovering from this for a while, so
        try to make several short term goals for yourself so you can see your own
        progress. If you can’t make it from the livingroom to the bedroom without
        stopping for a break, shoot for making it ¼ of the way, then ½ of the way,
        then ¾ of the way, etc. If you can’t read a novel right away, try short
        magazine articles, then longer articles, then essays, then short stories,
        then longer short stories, then short novels, etc.


        ” be good to yourself by taking breaks when you need them and not trying to
        push yourself too
        quickly”. When you get home, family and friends may come by to visit. You
        may feel like you have to make them feel comfortable by showing them how
        well you are and how “back to normal” you are. You may feel you need to say
        “would you like something to drink?” or when they start talking or asking
        questions, you may feel you need to do whatever you can to keep up with
        conversations and concentration on their statements... even when you feel
        like you could fall dead asleep because their visit has tired you so much.
        Don’t!!!!!! Your real friends will understand when you say “If you wouldn’t
        mind, I’m going to go take a nap. I’m starting to feel very tired.” You
        may find that you need to do this. This is what I mean by being good to
        yourself and not trying to push yourself too much. Maybe you can have a cue
        for your family like a sigh or something, a phrase, that they would know
        when you are getting tired and help you out with this.



        >>>> Wow, I didn't plan that whine session...sorry.
        What I meant to say is that I am worried since I don't bounce back like I
        used to, but still try to, what should I really do after surgery?<<<<



        This was not a whine session, you were expressing your fears and concerns
        and that is GOOD. As for bouncing back, you are halfway there because you
        WANT to. Now, all you have to do is your best.



        I hope some of this helped. Remember, these are just my experiences and I
        can’t speak for everyone. It’s a rough journey, but I feel strengthened,
        wiser and more appreciative of what I have for having taken that journey.



        I can’t wait to hear how your experience is.



        Keep those thoughts coming,



        Trisha

        Trisha Williams, R.N.

        BrainSurgery@Yahoo Group Founder/Moderator

        4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99

        Living, laughing and loving better than ever!

        HAVE YOU VOTED IN THE POLLS???? CHECK THEM OUT:
        <http://health.groups.yahoo.com/group/BrainSurgery/polls>
        http://health.groups.yahoo.com/group/BrainSurgery/polls





        _____

        From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
        Behalf Of Catherine J. Ilson
        Sent: Thursday, April 21, 2005 6:24 PM
        To: BrainSurgery@yahoogroups.com
        Cc: 'oligo group'; brain-temozolomide@yahoogroups.com;
        BRAINTMR@...
        Subject: RE: Approaching surgery, thanks all




        Dear Trisha,

        Thanks so much for your support. (Your name seems familiar too, but I am
        afraid my visual memory seems to be in the dumper.)

        Amazing how much support you can get from "strangers" - it is so helpful to
        hear from people how are struggling with the same things, I am sure I would
        not be up to all this without everyone's help and insights and "rah, rahs".
        It does feel like a team in a way, all pulling for each other, all feel the
        ups and downs together. Makes the ride more meaningful, overall more
        positive.

        I think the things I want most is to be prepared, I don't do so well with
        surprises.
        I seem to panic first when faced with an unexpected uncomfortable situation
        or pain ,(I am sure it is wired in most of us to react that way to surprise
        - I am sure it was very helpful for us when we where protecting ourselves
        from lions, snakes and the like in the wild...)
        So,
        It is really been helpful to hear stories and the list of possible
        expectations.

        In my case, a very large tumor- not a solid mass I'm told but more like
        "toothpaste in a sponge", in my left temporal lobe, suggests a very long
        surgery.
        What can I expect to go through from beginning to end? (Laying in one
        position for 12 hours?)
        (I remember after my biopsy I had have the frame screwed in my head for
        hours because the surgeon was delayed with another surgery, when I was
        finally done I had the worst headache I ever remembered and pain meds were
        not given for a long time...)
        What's the possibility that I won't be able function after and in what ways
        and for how long?
        When there is a long "picking and sucking" session in the brain, is there a
        lot of swelling (obvious?) that would lead to ? Pain? From pressure from
        swelling or from the sutures or staples holding the skin and skull together
        back...

        What about function? (I know no one knows the answer to this, even the
        doctor in advance) Just wondering what are the similar situations people
        have gone through that I can compare with. Is it really possible to be
        talking fine after the surgery?

        Has anyone out there have this kind of tumor in the same area?

        I have heard from some people who have had wonderful successful surgeries,
        and are back to work in two weeks, or almost back to themselves in a month,
        then I hear about opposite stories...
        I think the awake surgeries seem to leave people much better than the asleep
        surgeries, Is that an incorrect assumption?

        One you say
        "My usual advice... take things one day at a time... be good to yourself by
        taking breaks when you need them and not trying to push yourself too
        quickly... be patient with yourself."
        Is good advice I know, I am afraid it is hard for me to interpret it.

        I tend to feel better when I push a little, keeps my mind off of the aches
        and pains and makes me feel good for trying.
        I have fibromalgia (I even feel embarrassed to say it), which I dismissed
        for a long time as some non-dx for stress.
        I used to play tennis, take martial arts classes, riding, and other
        activities that I always felt good after working out. Even if I got out of
        shape and got back to it (like after giving birth) I would be sore for a
        couple of weeks but then get stronger and could add to my workout.

        But after trying to take up some old activities (I tried martial arts,
        tennis ,then slowed it down with yoga (way too slow for me usually), and
        then even tai chi (really slow!) and still I was sore after every mild
        workout. I have been walking 2 miles every day almost since my dx just to
        keep moving but I haven't gotten stronger or faster, never able to increase
        the pace or impact. That has never happened to me.
        Of course, I am older now so I accept some of it as just an old body, but
        still...
        It all started after my chemo, steroids (now I have terrible osteoporosis),
        Thalidomide and Tamoxifen ...

        Wow, I didn't plan that whine session...sorry.
        What I meant to say is that I am worried since I don't bounce back like I
        used to, but still try to, what should I really do after surgery?

        Sigh.
        Thanks for asking:
        "Is there anything we can do to help prepare you for your surgery?
        Questions, concerns, etc?"
        Maybe you didn't expect such a rambling reply!

        I guess the questions will keep coming. I know there isn't a formula, I will
        be just fine and deal as I go along.
        I will have friends and family around and I will have a fantastic surgeon.
        Still, all your input helps me.

        At lease I think it is all very interesting - the brain is such an amazing
        thing.

        Take care to all,

        Catherine


        -----Original Message-----
        From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
        Behalf Of Trisha Williams
        Sent: Thursday, April 21, 2005 2:24 PM
        To: BrainSurgery@yahoogroups.com
        Subject: Re: Approaching surgery, thanks all

        Way to go, Catherine! I believe I met you at the FBTA conference (which I
        agree was wonderful). Congratulations on being so proactive at preparing
        yourself for your surgery not only by reaching out for emotional support but
        by educating yourself as well. I love to see people empowering themselves
        to advocate for themselves. Good job.

        My usual advice... take things one day at a time... be good to yourself by
        taking breaks when you need them and not trying to push yourself too
        quickly... be patient with yourself.

        Most importantly, let us know how everything goes!!!!!!

        Is there anything we can do to help prepare you for your surgery?
        Questions, concerns, etc?
        -Trisha

        --- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
        <CILSON@c...> wrote:
        > Dear All,
        >
        > I have read in awe for 3 years of all the brave people having
        brain surgery. I was very happy to hear how in most cases it seemed to help
        extend and/or improve people's life and I got great inspiration from the
        stories
        of courageous survivors going through such a scary procedure.
        > I also read to learn anything I could about surgery for the time
        when I may need the surgery (when the tumor growth was causing more
        dangerous
        problems than the language and memory problems that would result from the
        surgery.)>
        > In some way I was also jealous that my tumor was considered
        inoperable -(what an odd thought, to be jealous not be able to have brain
        surgery) I know most of you, especially the all "inoperable" people,
        understand what I mean.
        > I also hoped that some day there would be a way to have surgery
        without the serious dangerous "side effects" I was warned about.
        > > It seems that time is here.
        > > After all the searching, and reading on these lists (which is
        where I learned about the FBTA conference- thank you all) I found surgeons
        who are confident they can remove my tumor. I also met other survivors who
        have had great success with these procedures (awake surgery, intra MRI's,
        brain mapping...) adding to my confidence.
        > I will be having several tests done next week (fMRI, WADA, MRI
        Spec) and am told that if it all looks as they expect, they would suggest
        doing
        the surgery as soon as May 2nd (but I could always delay...)
        > > I have gotten some wonderful supportive and informative emails all
        about the tests, the surgery and the recovery. The information is invaluable
        to me because of the information starved kind of person I am. The more I
        know, the more at ease I am. The more I can be prepared - for good or bad-
        the better I handle things.
        > > So I wanted to thank all of you who wrote to me, I know it takes
        time and energy to write- something we all struggle with- so I want to
        thank you for the effort and support. It means so much to me.
        >
        > Thanks to all,
        > (I will also add, that the lines are still open, or "keep the
        letters and calls coming!" There is no limit to the amount of information I
        am
        > interested in getting!)
        >
        > Wishing you all the best,
        > Catherine (45)
        > (Oligo List facilitator)
        >
        > 4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q
        Deletion (6x4.5) L temporal lobe, "inoperable".
        > 5/2002: PCV for 6 months;
        > 1/2003: Antineoplastons for 12 months;
        > 1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
        > Thalidomide,and supplement: Squalamax.
        > MRI's continue stable.
        > 1/2005: Stopping all treatment- "wait and watch" (per Duke)
        except: Keppra (for seizures) and Namenda (for memory).
        > 1/2005: Began Neurofeedback training for sleep problems,clearer
        thinking,and depression. (It has helped!)
        > 3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled
        testing: fMRI, WADA 4/26/05...
        > m/o Alex (16), Kira (15), Jake (11)





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      • Patricia Williams
        What a beautiful post, Mary! Congratulations also in your progress as well as your amazing methods to deal emotionally with those people you love. I loved
        Message 3 of 16 , Apr 22 8:36 AM
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          What a beautiful post, Mary!



          Congratulations also in your progress as well as your amazing methods to
          deal emotionally with those people you love. I loved your ideas ...
          especially the birthday cards. I'm so glad you didn't need to use them, but
          love the thought just the same.



          Thank you for contributing your post.



          Trisha



          _____

          From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
          Behalf Of Mary Lowrey
          Sent: Thursday, April 21, 2005 7:14 PM
          To: BrainSurgery@yahoogroups.com
          Subject: RE: Approaching surgery, thanks all



          Catherine....I don't often post from UK but.....you are so brave. I don't
          know how you have managed for so long with the awareness of the tumour you
          have. I had an MRI for vision problems on 02.03.04 then surgery for a
          petrous angle meningioma on 02.04.04 - tumour size 5cm x 4.5 cm adjacent to
          brain stem. I write to you because you have 3 children - just like me - and
          of simiilar ages. My children are my world and I struggled to analyse how
          much information they could cope with. My 2 sons were 14 and 11, my daughter

          was 13. I told them nothing on the scan day, and then spent some time
          explaining that I had a vision problem which led to me having a scan. This
          was the truth and they knew I was having a scan. I told them the whole truth

          in small segments, eventually saying the word 'tumour' and explaining that
          this meant an abnormal growth. Here, in the UK, people automatically believe

          that a tumour is cancer. My children did not ask me anything which I could
          not answer because I researched everything in advance - even checking
          definitions in dictionaries to make sure I could answer their questions!
          Surgery was scary - big time - and I felt like saying 'goodbye' to my
          children but found it very difficult. I did not want to upset them, yet was
          so scared that I would not see them again. I wrote short notes to thank all
          my close friends and relatives for their support, kept the tone light, and
          posted them on the evening before the op, but I could not face doing the
          same for my children. I bought birthday cards for each birthday for my
          children for the following year, wrote what I wanted in them, sealed them
          and put them away.
          So.......I wrote everything that I felt, thought and experienced in a sort
          of diary while I was in hospital and, immediately before my op, put the
          diary away. I survived.....my children have never read my diary - no-one has

          - not even me - and the cards remain sealed. They were not upset unduly and
          my daughter did so well at school that year that she won a prestigious
          award!!!!!
          They will never know what I went through but they are so well-adjusted that
          one of my sons said, just recently, 'mam, did you have a brain tumour?' I
          said 'yes, I did, but the doctor removed it. There is a little bit left and
          that's why I go to the hospital for check-ups'. He said....'why didn't you
          tell me?' and, when I explained that I did, and he remembered everything I
          had said, he said ' I didn't realise how brave you were'.....I cried.
          I'm telling you this....not because I think I handled it well, but because I

          told my children the truth, bit by bit, and they - a year later - make me so

          proud. There is no perfect way to talk to them and everyone knows their own
          family best - but 'stay strong', the surgery is far easier to cope with
          than the uncertainty and your love for your children will give you the
          strength to conquer this.

          My prayers and thoughts are with you....it is a year since my surgery, and 2

          scans prove that the base of my tumour is still there but stable. I still
          worry - we all do - but I have been fortunate enough to return to work and,
          most importantly, I have been allowed to stay the same 'mam' my children
          have always known. For that, I cannot be more grateful. I pray that your
          surgery is totally successful, that the worry is removed totally, your
          tumour completely excised, and you enjoy a complete recovery.
          Mary



          >From: "Catherine J. Ilson" <CILSON@...>
          >Reply-To: BrainSurgery@yahoogroups.com
          >To: "'oligo group'" <Oligodendroglioma@...>,
          ><brain-temozolomide@yahoogroups.com>, <BRAINTMR@...>
          >CC: <BrainSurgery@yahoogroups.com>
          >Subject: Approaching surgery, thanks all
          >Date: Thu, 21 Apr 2005 09:45:58 -0400
          >
          >Dear All,
          >
          >I have read in awe for 3 years of all the brave people having brain
          >surgery.
          >I was very happy to hear how in most cases it seemed to help extend and/or
          >improve people's life and I got great inspiration from the stories of
          >courageous survivors going through such a scary procedure.
          >
          >I also read to learn anything I could about surgery for the time when I may
          >need the surgery (when the tumor growth was causing more dangerous problems
          >than the language and memory problems that would result from the surgery.)
          >
          >In some way I was also jealous that my tumor was considered inoperable
          >-(what an odd thought, to be jealous not be able to have brain surgery)
          >I know most of you, especially the all "inoperable" people, understand what
          >I mean.
          >I also hoped that some day there would be a way to have surgery without the
          >serious dangerous "side effects" I was warned about.
          >
          >It seems that time is here.
          >
          >After all the searching, and reading on these lists (which is where I
          >learned about the FBTA conference- thank you all) I found surgeons who are
          >confident they can remove my tumor. I also met other survivors who have had
          >great success with these procedures (awake surgery, intra MRI's, brain
          >mapping...) adding to my confidence.
          >
          >I will be having several tests done next week (fMRI, WADA, MRI Spec) and am
          >told that if it all looks as they expect, they would suggest doing the
          >surgery as soon as May 2nd (but I could always delay...)
          >
          >I have gotten some wonderful supportive and informative emails all about
          >the
          >tests, the surgery and the recovery. The information is invaluable to me
          >because of the information starved kind of person I am. The more I know,
          >the
          >more at ease I am. The more I can be prepared - for good or bad- the better
          >I handle things.
          >
          >So I wanted to thank all of you who wrote to me, I know it takes time and
          >energy to write- something we all struggle with- so I want to thank you
          >for
          >the effort and support. It means so much to me.
          >
          >Thanks to all,
          >
          >(I will also add, that the lines are still open, or "keep the letters and
          >calls coming!" There is no limit to the amount of information I am
          >interested in getting!)
          >
          >
          >Wishing you all the best,
          >Catherine (45)
          >
          >(Oligo List facilitator)
          >
          >4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q deletion
          >(6x4.5) L temporal lobe, "inoperable".
          >5/2002: PCV for 6 months;
          >1/2003: Antineoplastons for 12 months;
          >1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
          >Thalidomide,and supplement: Squalamax.
          >MRI's continue stable.
          >1/2005: Stopping all treatment- "wait and watch" (per Duke) except: Keppra
          >(for seizures) and Namenda (for memory).
          >1/2005: Began Neurofeedback training for sleep problems,clearer
          >thinking,and
          >depression. (It has helped!)
          >
          >3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled testing: fMRI,
          >WADA 4/26/05...
          >m/o Alex (16), Kira (15), Jake (11)
          >
          >
          >
          >
          >
          >
          >
          >[Non-text portions of this message have been removed]
          >





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          [Non-text portions of this message have been removed]
        • Catherine J. Ilson
          Dear Trisha, Thank you so much for the feedback. Every bit of it is very helpful for me (and always so interesting!) It is odd, many of the stories are so
          Message 4 of 16 , Apr 22 4:39 PM
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            Dear Trisha,

            Thank you so much for the feedback. Every bit of it is very helpful for me
            (and always so interesting!)

            It is odd, many of the stories are so similar to my first and second
            hospitalizations.

            I had a partial seizure during in the night (didn't know what it was at the
            time) and when I woke I was unable to speak correctly (all the words I was
            trying to say came out all mixed up) I eventually agreed to go to the ER and
            ended getting the MRI, dx and then in for the biopsy. They kept me in the
            hospital almost a week for all that. My language was still a problem but
            improving.

            I remember the biopsy was overall not that bad, but after my head hurt
            terribly and I didn’t get any pain meds for over an hour- I almost passed
            out from the pain.
            I guess that is the kind of thing I get worried about. (And my sister- the
            RN- was running all over to get the nurses to get the meds, and they
            couldn't because the surgeon didn't leave the order...)

            Three weeks later I was feeling almost normal and I had a grand mal while
            driving to work...
            I pulled over when I felt it coming on and called someone and it took them
            over 2 hours to find me...all the while I was having seizures.
            I was in NICU for 3 days and finally started to rouse and was moved to a
            regular room. A few days later for me to start to understand part of
            conversations around me. It was odd, I felt fine, but my mind was not
            working.
            Very interesting.
            I couldn't talk easily, write, read, watch TV, and almost anything that took
            concentration was out for a long while. All the things I did with ease
            before now seemed forgotten, or oddly missing in part.

            Oddly, I could still sign (I was a sign language interpreter for 15 years)
            but no one around me understood me, and didn't know how to sign...I often
            sign to myself when I can't come up with a word and then can remember the
            English word I am looking for. The other thing, I can often whisper the word
            I am looking for or having trouble pronouncing and gradually say it louder
            and I get it right.
            So interesting.

            I did some speech therapy and gradually improved and kept finding ways to
            adapt but never returned to where I was before. It was sad for me.

            Recently, after learning about neurofeedback training, I decided to try it
            and was amazed about how much of my old mental clarity, concentration and
            language (reading and writing) and especially my mood returned.
            I am much more confident that if I have trouble after surgery the
            neurofeedback will help me.


            I am meeting with Dr. Black on Monday (the first time since talking with him
            at the conference) and am really looking forward to that.

            I have so many questions that are specific to my situation that I think he
            can address - much he did when we talked first- but because there has so
            much time since we talked, and have never spoken since I became his
            "patient" I know it will add the final calm to the whole thing.
            I found him very articulate and open and never made me feel uncomfortable
            asking questions. The right kind of surgeon for me. (Plus he was so
            fascinated by my symptoms, and the lack of them, and was very interesting
            mapping my brain- ya gotta love the guy!)

            I will have my laptop with my when I go to Boston so I will plan to check in
            on the Lists,
            Thanks everyone for all the help, information and support.

            Best wishes,
            Catherine


            -----Original Message-----
            From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
            Behalf Of Patricia Williams
            Sent: Friday, April 22, 2005 11:09 AM
            To: BrainSurgery@yahoogroups.com
            Subject: RE: Approaching surgery, thanks all


            Catherine –
            Some thoughts, answers, comments about your response:
            >>>>“Amazing how much support you can get from "strangers"”<<<<<:
            I know what you mean about this!!! It’s been my experience that I’ve
            received the most support from people I didn’t know at all or people I met
            on line and had never met face-to-face (yet). To me, we’re like “family”
            because what we have in common is relatively rare. It’s as though we are
            all from earth and have met on another planet... just being from “earth”
            would make us “kin”. (and now that you totally think I’m crazy, I’ll go
            on...)

            >>>>“What can I expect to go through from beginning to end? (Laying in
            >>>>one position for 12 hours?)”<<<<
            My experience with this was I was just a little sore (my arm had been
            positioned in such a way that I felt like I had been pitching a ball game
            all night). After the anesthesia and with the pain medications they must
            have given me (since I don’t recall any pain), the first few days are pretty
            blurry. I actually recall the IVs and intravenous meds as being the worst
            part of it all since I have such bad veins and they had to keep restarting
            the lines over and over. Hopefully, the fact that this is my worst memory
            of it should put it in perspective a bit.


            My surgery was also in the left temporal area (also left parietal and left
            frontal). My tumor was a solid mass though, unlike yours. There was a rim
            of brain tissue removed with the tumor in my case to be sure they had
            resected the whole thing. I am right handed, so the left side of the brain
            was involved in speech (if someone is left handed, the right side of the
            brain would be more involved in speech). I’m not sure which you are. I
            mention these items because there may be similarities in my experience to
            yours. No two people, as I am sure you know as a PT, can compare notes
            exactly, but hopefully my experience with this will make this less of an
            “unknown” for you.


            I remember being very confused when I awoke. My head did not hurt. I
            remember people coming to visit me the first day, right after surgery. I
            remember not really trying to talk, but just listening. The second day, I
            remember when I first spoke, it was very monotoned – no inflection in my
            speech at all and my words didn’t come out exactly right. Example: when I
            tried to say “Where is my ______?” it would come out
            “Where...is...me...____”. Difficulty wordfinding and I sounded like a
            little leprechaun because it always came out “me” instead of “my.”


            Each day, I was there a total of 7 days, family would say I looked a little
            better. As the days moved on, I felt clearer with each day. Things were
            like slow motion and it took me a while to do things, but I remember feeling
            very happy. Happy to be alive, happy to be over the surgery, happy to see
            my family, happy about everything. At first, I couldn’t use my right hand,
            so I learned to do things with the left hand. (like eating, signing with an
            X, etc.) One therapist after another would come into the room. Speech
            therapy, occupational therapy, physical therapy. It struck me a bit hard
            that I went from publishing articles on HIV seroprevalence to trying to put
            different shaped pegs into holes. It struck me a bit harder that I actually
            had some difficulty with it! It was hard to think a thought through from
            beginning to end without getting lost somewhere in the middle. Sometimes, I
            would hear a sentence and I would listen intently, but by the time someone
            got to the end of a sentence, I couldn’t remember the beginning of the
            sentence so I missed a lot. But each day this improved. There was a sense
            of “numbness” to all of it, so it wasn’t as difficult as it might seem.

            But, mostly I want you to know that IT GETS BETTER. Every day something
            improved. Gradually, inflection came back into my speech. I went from
            walking with someone holding me up by a strap to walking with a walker, then
            with a cane, then holding onto walls, and now without any assistance.
            Thought processes gradually returned. I am now ambidextrous and use my
            right hand again for most things. My thought processes are not as quick as
            they used to be, but I can keep up and most people don’t realize I’m
            struggling sometimes. In my case, I have kind of forgotten the speed at
            which I used to process thoughts, so I have become comfortable with my
            limitations.

            >>>>“What's the possibility that I won't be able function after and in
            >>>>what ways and for how long?
            When there is a long "picking and sucking" session in the brain, is there a
            lot of swelling (obvious?) that would lead to ? Pain? From pressure from
            swelling or from the sutures or staples holding the skin and skull together
            back...<<<<

            I made comments to some of this above. As far as pain in my head, I
            remember not being able to lie on that side of my head for a long time. I
            wouldn’t say it hurt, but it was tender to lay on and probably some of it
            was fear on my part. To this day, 6 years after my surgery, I tend to be
            over-protective of this side of my head. If something looks like it’s going
            to fall or something, I instinctually guard that side. Pain at the surgical
            area was not something I felt at all. It did not hurt to have the staples
            removed. The sensation around the incision is still different to me. I
            still have tenderness along the incision, but I can brush my hair, shampoo,
            etc. without any discomfort. There are areas of depression (I call them
            coin holders) along the incision where it feels like someone stuck a
            fingertip into a soft pumpkin or something... But if actual pain in your
            head is a concern of yours, in my opinion, that was a breeze. It’s
            different with abdominal surgery or something like that when there are
            muscles you have to move around the affected area. The scalp is a pretty
            good area for surgery, in a way, because you don’t really use those muscles
            for many day to day activities as you would other parts of the body. As far
            as actual brain swelling, they will most likely start steroids, maybe even
            before your surgery, to keep brain swelling down.



            >>>>"My usual advice... take things one day at a time... be good to
            >>>>yourself by taking breaks when you need them and not trying to push
            yourself too quickly... be patient with yourself." Is good advice I know, I
            am afraid it is hard for me to interpret it.<<<<

            I’m glad you asked for clarification on this. I didn’t have enough time to
            write in my previous email what I meant and can see it would be hard to
            interpret it.

            Here’s what I mean:

            “take things one day at a time”: This is not like healing from a C-section
            or appendectomy. Don’t bite off a big piece of your recovery and just focus
            on the long term goals. You will be recovering from this for a while, so
            try to make several short term goals for yourself so you can see your own
            progress. If you can’t make it from the livingroom to the bedroom without
            stopping for a break, shoot for making it ¼ of the way, then ½ of the way,
            then ¾ of the way, etc. If you can’t read a novel right away, try short
            magazine articles, then longer articles, then essays, then short stories,
            then longer short stories, then short novels, etc.


            ” be good to yourself by taking breaks when you need them and not trying to
            push yourself too quickly”. When you get home, family and friends may come
            by to visit. You may feel like you have to make them feel comfortable by
            showing them how well you are and how “back to normal” you are. You may
            feel you need to say “would you like something to drink?” or when they start
            talking or asking questions, you may feel you need to do whatever you can to
            keep up with conversations and concentration on their statements... even
            when you feel like you could fall dead asleep because their visit has tired
            you so much.
            Don’t!!!!!! Your real friends will understand when you say “If you wouldn’t
            mind, I’m going to go take a nap. I’m starting to feel very tired.” You
            may find that you need to do this. This is what I mean by being good to
            yourself and not trying to push yourself too much. Maybe you can have a cue
            for your family like a sigh or something, a phrase, that they would know
            when you are getting tired and help you out with this.

            >>>> Wow, I didn't plan that whine session...sorry.
            What I meant to say is that I am worried since I don't bounce back like I
            used to, but still try to, what should I really do after surgery?<<<<

            This was not a whine session, you were expressing your fears and concerns
            and that is GOOD. As for bouncing back, you are halfway there because you
            WANT to. Now, all you have to do is your best.

            I hope some of this helped. Remember, these are just my experiences and I
            can’t speak for everyone. It’s a rough journey, but I feel strengthened,
            wiser and more appreciative of what I have for having taken that journey.

            I can’t wait to hear how your experience is.

            Keep those thoughts coming,


            Trisha
            Trisha Williams, R.N.
            BrainSurgery@Yahoo Group Founder/Moderator
            4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99
            Living, laughing and loving better than ever!

            From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
            Behalf Of Catherine J. Ilson
            Sent: Thursday, April 21, 2005 6:24 PM
            To: BrainSurgery@yahoogroups.com
            Subject: RE: Approaching surgery, thanks all

            Dear Trisha,

            Thanks so much for your support. (Your name seems familiar too, but I am
            afraid my visual memory seems to be in the dumper.)

            Amazing how much support you can get from "strangers" - it is so helpful to
            hear from people how are struggling with the same things, I am sure I would
            not be up to all this without everyone's help and insights and "rah, rahs".
            It does feel like a team in a way, all pulling for each other, all feel the
            ups and downs together. Makes the ride more meaningful, overall more
            positive.

            I think the things I want most is to be prepared, I don't do so well with
            surprises.
            I seem to panic first when faced with an unexpected uncomfortable situation
            or pain ,(I am sure it is wired in most of us to react that way to surprise
            - I am sure it was very helpful for us when we where protecting ourselves
            from lions, snakes and the like in the wild...) So, It is really been
            helpful to hear stories and the list of possible expectations.

            In my case, a very large tumor- not a solid mass I'm told but more like
            "toothpaste in a sponge", in my left temporal lobe, suggests a very long
            surgery.
            What can I expect to go through from beginning to end? (Laying in one
            position for 12 hours?) (I remember after my biopsy I had have the frame
            screwed in my head for hours because the surgeon was delayed with another
            surgery, when I was finally done I had the worst headache I ever remembered
            and pain meds were not given for a long time...) What's the possibility that
            I won't be able function after and in what ways and for how long?
            When there is a long "picking and sucking" session in the brain, is there a
            lot of swelling (obvious?) that would lead to ? Pain? From pressure from
            swelling or from the sutures or staples holding the skin and skull together
            back...

            What about function? (I know no one knows the answer to this, even the
            doctor in advance) Just wondering what are the similar situations people
            have gone through that I can compare with. Is it really possible to be
            talking fine after the surgery?

            Has anyone out there have this kind of tumor in the same area?

            I have heard from some people who have had wonderful successful surgeries,
            and are back to work in two weeks, or almost back to themselves in a month,
            then I hear about opposite stories...
            I think the awake surgeries seem to leave people much better than the asleep
            surgeries, Is that an incorrect assumption?

            One you say
            "My usual advice... take things one day at a time... be good to yourself by
            taking breaks when you need them and not trying to push yourself too
            quickly... be patient with yourself."
            Is good advice I know, I am afraid it is hard for me to interpret it.

            I tend to feel better when I push a little, keeps my mind off of the aches
            and pains and makes me feel good for trying.
            I have fibromalgia (I even feel embarrassed to say it), which I dismissed
            for a long time as some non-dx for stress.
            I used to play tennis, take martial arts classes, riding, and other
            activities that I always felt good after working out. Even if I got out of
            shape and got back to it (like after giving birth) I would be sore for a
            couple of weeks but then get stronger and could add to my workout.

            But after trying to take up some old activities (I tried martial arts,
            tennis ,then slowed it down with yoga (way too slow for me usually), and
            then even tai chi (really slow!) and still I was sore after every mild
            workout. I have been walking 2 miles every day almost since my dx just to
            keep moving but I haven't gotten stronger or faster, never able to increase
            the pace or impact. That has never happened to me.
            Of course, I am older now so I accept some of it as just an old body, but
            still...
            It all started after my chemo, steroids (now I have terrible osteoporosis),
            Thalidomide and Tamoxifen ...

            Wow, I didn't plan that whine session...sorry.
            What I meant to say is that I am worried since I don't bounce back like I
            used to, but still try to, what should I really do after surgery?

            Sigh.
            Thanks for asking:
            "Is there anything we can do to help prepare you for your surgery?
            Questions, concerns, etc?"
            Maybe you didn't expect such a rambling reply!

            I guess the questions will keep coming. I know there isn't a formula, I will
            be just fine and deal as I go along.
            I will have friends and family around and I will have a fantastic surgeon.
            Still, all your input helps me.

            At lease I think it is all very interesting - the brain is such an amazing
            thing.

            Take care to all,

            Catherine


            -----Original Message-----
            From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
            Behalf Of Trisha Williams
            Sent: Thursday, April 21, 2005 2:24 PM
            To: BrainSurgery@yahoogroups.com
            Subject: Re: Approaching surgery, thanks all

            Way to go, Catherine! I believe I met you at the FBTA conference (which I
            agree was wonderful). Congratulations on being so proactive at preparing
            yourself for your surgery not only by reaching out for emotional support but
            by educating yourself as well. I love to see people empowering themselves
            to advocate for themselves. Good job.

            My usual advice... take things one day at a time... be good to yourself by
            taking breaks when you need them and not trying to push yourself too
            quickly... be patient with yourself.

            Most importantly, let us know how everything goes!!!!!!

            Is there anything we can do to help prepare you for your surgery?
            Questions, concerns, etc?
            -Trisha

            --- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
            <CILSON@c...> wrote:
            > Dear All,
            >
            > I have read in awe for 3 years of all the brave people having
            brain surgery. I was very happy to hear how in most cases it seemed to help
            extend and/or improve people's life and I got great inspiration from the
            stories of courageous survivors going through such a scary procedure.
            > I also read to learn anything I could about surgery for the time
            when I may need the surgery (when the tumor growth was causing more
            dangerous problems than the language and memory problems that would result
            from the surgery.)>
            > In some way I was also jealous that my tumor was considered
            inoperable -(what an odd thought, to be jealous not be able to have brain
            surgery) I know most of you, especially the all "inoperable" people,
            understand what I mean.
            > I also hoped that some day there would be a way to have surgery
            without the serious dangerous "side effects" I was warned about.
            > > It seems that time is here.
            > > After all the searching, and reading on these lists (which is
            where I learned about the FBTA conference- thank you all) I found surgeons
            who are confident they can remove my tumor. I also met other survivors who
            have had great success with these procedures (awake surgery, intra MRI's,
            brain mapping...) adding to my confidence.
            > I will be having several tests done next week (fMRI, WADA, MRI
            Spec) and am told that if it all looks as they expect, they would suggest
            doing the surgery as soon as May 2nd (but I could always delay...)
            > > I have gotten some wonderful supportive and informative emails all
            about the tests, the surgery and the recovery. The information is invaluable
            to me because of the information starved kind of person I am. The more I
            know, the more at ease I am. The more I can be prepared - for good or bad-
            the better I handle things.
            > > So I wanted to thank all of you who wrote to me, I know it takes
            time and energy to write- something we all struggle with- so I want to
            thank you for the effort and support. It means so much to me.
            >
            > Thanks to all,
            > (I will also add, that the lines are still open, or "keep the
            letters and calls coming!" There is no limit to the amount of information I
            am
            > interested in getting!)
            >
            > Wishing you all the best,
            > Catherine (45)
            > (Oligo List facilitator)
            >
            > 4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q
            Deletion (6x4.5) L temporal lobe, "inoperable".
            > 5/2002: PCV for 6 months;
            > 1/2003: Antineoplastons for 12 months;
            > 1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
            > Thalidomide,and supplement: Squalamax.
            > MRI's continue stable.
            > 1/2005: Stopping all treatment- "wait and watch" (per Duke)
            except: Keppra (for seizures) and Namenda (for memory).
            > 1/2005: Began Neurofeedback training for sleep problems,clearer
            thinking,and depression. (It has helped!)
            > 3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled
            testing: fMRI, WADA 4/26/05...
            > m/o Alex (16), Kira (15), Jake (11)





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          • Catherine J. Ilson
            Dear Mary, Thank you for your warm support. I remember when I woke up unable to speak and had to get an MRI to learn I had a huge brain tumor, and it was
            Message 5 of 16 , Apr 22 6:17 PM
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              Dear Mary,

              Thank you for your warm support.

              I remember when I woke up unable to speak and had to get an MRI to learn I
              had a huge brain tumor, and it was inoperable...
              The first thoughts were of not being able to see my children grow up.

              I remember feeling all the things you were saying you felt. The shock and
              terrible sadness.
              Because I had the gift of time (slow growing tumor) I started to mobilize.
              I started making plans to leave my children the best I could.
              I organized my financial details (wills, living wills, etc) and started
              talking with them gradually covering all the things I wanted to make sure I
              told them before it was too late to say.

              When I had a grand mal seizure after three weeks after my dx it really
              freaked out my kids.
              (I only learned much later that two of my children in the car when their
              father found me so they saw me having seizures while they drove me to the
              ER.)

              It is tricky because I didn't want them to imagine terrible things and be
              anxious, so I kept a very positive attitude and told them I was lucky that I
              have a slow growing tumor and in a few years there will be new and better
              treatments...etc.
              They grabbed onto that and I am glad for it.
              It is awful seeing your children afraid and not able to make them feel safe.
              I eventually wrote letters to them, on different occasions, that told them
              what I think of them as individuals and how proud of watching them growing
              up...

              I have tried to be honest with them, but not to tell them more than they
              wanted to know. And always told them they can ask me anything if it occurs
              to them. I casually brought up as many explanations I thought would be
              helpful.
              Overall I think I try not to make it a big part of our lives but don't deny
              it exists. I joke a lot too as does my family so I think that is how we
              dealt with a lot of weirdness for a long time.
              Over three years all of us get a bit numb about it all.

              I have also offered therapist for all of us as a family, and individually,
              so they could have a place talk about anything that they may not want to say
              to me.
              They all used it in different ways but I believe it helped and they know
              that they can always go back to the therapist now that they have a
              relationship with him it is easier.

              I think with the upcoming surgery the kids are very casual about it, and I
              guess that is how I am acting about it.
              We are talking about how I will shave my head like a Mohawk instead about
              the dangers of surgery.


              It sounds like you did just what you thought best for you and your children,
              that must have been very difficult.
              You should feel very proud of yourself - you were a brave soldier* when you
              needed to be.
              Your kids sound wonderful.

              Take good care, and thanks for your heartfelt support.

              Catherine


              (*I always used this term for my kids when they are toughing out something
              hard)


              -----Original Message-----
              From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
              Behalf Of Mary Lowrey
              Sent: Thursday, April 21, 2005 7:14 PM
              To: BrainSurgery@yahoogroups.com
              Subject: RE: Approaching surgery, thanks all


              Catherine....I don't often post from UK but.....you are so brave.
              I don't know how you have managed for so long with the awareness of the
              tumour you have.

              I had an MRI for vision problems on 02.03.04 then surgery for a petrous
              angle meningioma on 02.04.04 - tumour size 5cm x 4.5 cm adjacent to brain
              stem.

              I write to you because you have 3 children - just like me - and of simiilar
              ages.
              My children are my world and I struggled to analyse how much information
              they could cope with.
              My 2 sons were 14 and 11, my daughter was 13.
              I told them nothing on the scan day, and then spent some time explaining
              that I had a vision problem which led to me having a scan.
              This was the truth and they knew I was having a scan. I told them the whole
              truth in small segments, eventually saying the word 'tumour' and explaining
              that this meant an abnormal growth.
              Here, in the UK, people automatically believe that a tumour is cancer. My
              children did not ask me anything which I could not answer because I
              researched everything in advance - even checking definitions in dictionaries
              to make sure I could answer their questions!

              Surgery was scary - big time - and I felt like saying 'goodbye' to my
              children but found it very difficult.
              I did not want to upset them, yet was so scared that I would not see them
              again.
              I wrote short notes to thank all my close friends and relatives for their
              support, kept the tone light, and posted them on the evening before the op,
              but I could not face doing the same for my children.
              I bought birthday cards for each birthday for my children for the following
              year, wrote what I wanted in them, sealed them and put them away.
              So.......I wrote everything that I felt, thought and experienced in a sort
              of diary while I was in hospital and, immediately before my op, put the
              diary away. I survived.....my children have never read my diary - no-one has
              - not even me - and the cards remain sealed.
              They were not upset unduly and my daughter did so well at school that year
              that she won a prestigious award!!!!!

              They will never know what I went through but they are so well-adjusted that
              one of my sons said, just recently, 'mam, did you have a brain tumour?' I
              said 'yes, I did, but the doctor removed it.
              There is a little bit left and that's why I go to the hospital for
              check-ups'. He said....'why didn't you tell me?' and, when I explained that
              I did, and he remembered everything I had said, he said ' I didn't realise
              how brave you were'.....I cried.

              I'm telling you this....not because I think I handled it well, but because I
              told my children the truth, bit by bit, and they - a year later - make me so
              proud.
              There is no perfect way to talk to them and everyone knows their own family
              best - but 'stay strong', the surgery is far easier to cope with than the
              uncertainty and your love for your children will give you the strength to
              conquer this.

              My prayers and thoughts are with you....it is a year since my surgery, and 2
              scans prove that the base of my tumour is still there but stable. I still
              worry - we all do - but I have been fortunate enough to return to work and,
              most importantly, I have been allowed to stay the same 'mam' my children
              have always known. For that, I cannot be more grateful. I pray that your
              surgery is totally successful, that the worry is removed totally, your
              tumour completely excised, and you enjoy a complete recovery.
              Mary



              >From: "Catherine J. Ilson" <CILSON@...>
              >Subject: Approaching surgery, thanks all
              >Date: Thu, 21 Apr 2005
              >
              >Dear All,
              >
              >I have read in awe for 3 years of all the brave people having brain
              >surgery.
              >I was very happy to hear how in most cases it seemed to help extend
              >and/or improve people's life and I got great inspiration from the
              >stories of courageous survivors going through such a scary procedure.
              >
              >I also read to learn anything I could about surgery for the time when I
              >may need the surgery (when the tumor growth was causing more dangerous
              >problems than the language and memory problems that would result from
              >the surgery.)
              >
              >In some way I was also jealous that my tumor was considered inoperable
              >-(what an odd thought, to be jealous not be able to have brain surgery)
              >I know most of you, especially the all "inoperable" people, understand
              >what I mean.
              >I also hoped that some day there would be a way to have surgery without
              >the serious dangerous "side effects" I was warned about.>>It seems that
              time is here.
              >
              >After all the searching, and reading on these lists (which is where I
              >learned about the FBTA conference- thank you all) I found surgeons who
              >are confident they can remove my tumor. I also met other survivors who
              >have had great success with these procedures (awake surgery, intra
              >MRI's, brain>mapping...) adding to my confidence.
              >
              >I will be having several tests done next week (fMRI, WADA, MRI Spec)
              >and am told that if it all looks as they expect, they would suggest
              >doing the surgery as soon as May 2nd (but I could always delay...)
              >
              >I have gotten some wonderful supportive and informative emails all
              >about the tests, the surgery and the recovery. The information is
              >invaluable to me because of the information starved kind of person I
              >am. The more I know, the more at ease I am. The more I can be prepared
              >- for good or bad- the better I handle things.
              >
              >So I wanted to thank all of you who wrote to me, I know it takes time
              >and energy to write- something we all struggle with- so I want to
              >thank you for the effort and support. It means so much to me.
              >Thanks to all,
              >
              >(I will also add, that the lines are still open, or "keep the letters
              >and calls coming!" There is no limit to the amount of information I am
              >interested in getting!)

              >Wishing you all the best,
              >Catherine (45)
              >
              >(Oligo List facilitator)
              >
              >4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q deletion
              >(6x4.5) L temporal lobe, "inoperable".
              >5/2002: PCV for 6 months;
              >1/2003: Antineoplastons for 12 months;
              >1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
              >Thalidomide,and supplement: Squalamax.
              >MRI's continue stable.
              >1/2005: Stopping all treatment- "wait and watch" (per Duke) except:
              >Keppra (for seizures) and Namenda (for memory).
              >1/2005: Began Neurofeedback training for sleep problems,clearer
              >thinking,and depression. (It has helped!)
              >3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled testing:
              >fMRI, WADA 4/26/05...
              >m/o Alex (16), Kira (15), Jake (11)

              >
            • Hope Shasha
              Dear Catherine, I don t have time to read many of the posts, but I have been really trying to read yours b/c I can so relate to what you are going through. I
              Message 6 of 16 , Apr 22 6:36 PM
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                Dear Catherine,

                I don't have time to read many of the posts, but I have been really trying
                to read yours b/c I can so relate to what you are going through. I have a 14
                yr. old son, Justin who is in a very similar situation as you. He has an
                inoperable tumor in the left posterior frontal lobe dx 9/04. We are flying
                to DC next week to meet with Dr. Myseros at Childrens National who is very
                optimistic about removing it.
                I just wanted you to know that I am supporting you, thinking about you and
                wish you a successful surgery.

                All the best to you,
                Hope Shasha

                >From: "Catherine J. Ilson" <CILSON@...>
                >Reply-To: BrainSurgery@yahoogroups.com
                >To: <BrainSurgery@yahoogroups.com>
                >Subject: RE: Approaching surgery, thanks all!
                >Date: Fri, 22 Apr 2005 19:39:12 -0400
                >
                > Dear Trisha,
                >
                >Thank you so much for the feedback. Every bit of it is very helpful for me
                >(and always so interesting!)
                >
                >It is odd, many of the stories are so similar to my first and second
                >hospitalizations.
                >
                >I had a partial seizure during in the night (didn't know what it was at the
                >time) and when I woke I was unable to speak correctly (all the words I was
                >trying to say came out all mixed up) I eventually agreed to go to the ER
                >and
                >ended getting the MRI, dx and then in for the biopsy. They kept me in the
                >hospital almost a week for all that. My language was still a problem but
                >improving.
                >
                >I remember the biopsy was overall not that bad, but after my head hurt
                >terribly and I didn�t get any pain meds for over an hour- I almost passed
                >out from the pain.
                >I guess that is the kind of thing I get worried about. (And my sister- the
                >RN- was running all over to get the nurses to get the meds, and they
                >couldn't because the surgeon didn't leave the order...)
                >
                >Three weeks later I was feeling almost normal and I had a grand mal while
                >driving to work...
                >I pulled over when I felt it coming on and called someone and it took them
                >over 2 hours to find me...all the while I was having seizures.
                >I was in NICU for 3 days and finally started to rouse and was moved to a
                >regular room. A few days later for me to start to understand part of
                >conversations around me. It was odd, I felt fine, but my mind was not
                >working.
                >Very interesting.
                >I couldn't talk easily, write, read, watch TV, and almost anything that
                >took
                >concentration was out for a long while. All the things I did with ease
                >before now seemed forgotten, or oddly missing in part.
                >
                >Oddly, I could still sign (I was a sign language interpreter for 15 years)
                >but no one around me understood me, and didn't know how to sign...I often
                >sign to myself when I can't come up with a word and then can remember the
                >English word I am looking for. The other thing, I can often whisper the
                >word
                >I am looking for or having trouble pronouncing and gradually say it louder
                >and I get it right.
                >So interesting.
                >
                >I did some speech therapy and gradually improved and kept finding ways to
                >adapt but never returned to where I was before. It was sad for me.
                >
                >Recently, after learning about neurofeedback training, I decided to try it
                >and was amazed about how much of my old mental clarity, concentration and
                >language (reading and writing) and especially my mood returned.
                >I am much more confident that if I have trouble after surgery the
                >neurofeedback will help me.
                >
                >
                >I am meeting with Dr. Black on Monday (the first time since talking with
                >him
                >at the conference) and am really looking forward to that.
                >
                >I have so many questions that are specific to my situation that I think he
                >can address - much he did when we talked first- but because there has so
                >much time since we talked, and have never spoken since I became his
                >"patient" I know it will add the final calm to the whole thing.
                >I found him very articulate and open and never made me feel uncomfortable
                >asking questions. The right kind of surgeon for me. (Plus he was so
                >fascinated by my symptoms, and the lack of them, and was very interesting
                >mapping my brain- ya gotta love the guy!)
                >
                >I will have my laptop with my when I go to Boston so I will plan to check
                >in
                >on the Lists,
                >Thanks everyone for all the help, information and support.
                >
                >Best wishes,
                >Catherine
                >
                >
                >-----Original Message-----
                >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                >Behalf Of Patricia Williams
                >Sent: Friday, April 22, 2005 11:09 AM
                >To: BrainSurgery@yahoogroups.com
                >Subject: RE: Approaching surgery, thanks all
                >
                >
                >Catherine �
                >Some thoughts, answers, comments about your response:
                > >>>>�Amazing how much support you can get from "strangers"�<<<<<:
                >I know what you mean about this!!! It�s been my experience that I�ve
                >received the most support from people I didn�t know at all or people I met
                >on line and had never met face-to-face (yet). To me, we�re like �family�
                >because what we have in common is relatively rare. It�s as though we are
                >all from earth and have met on another planet... just being from �earth�
                >would make us �kin�. (and now that you totally think I�m crazy, I�ll go
                >on...)
                >
                > >>>>�What can I expect to go through from beginning to end? (Laying in
                > >>>>one position for 12 hours?)�<<<<
                >My experience with this was I was just a little sore (my arm had been
                >positioned in such a way that I felt like I had been pitching a ball game
                >all night). After the anesthesia and with the pain medications they must
                >have given me (since I don�t recall any pain), the first few days are
                >pretty
                >blurry. I actually recall the IVs and intravenous meds as being the worst
                >part of it all since I have such bad veins and they had to keep restarting
                >the lines over and over. Hopefully, the fact that this is my worst memory
                >of it should put it in perspective a bit.
                >
                >
                >My surgery was also in the left temporal area (also left parietal and left
                >frontal). My tumor was a solid mass though, unlike yours. There was a rim
                >of brain tissue removed with the tumor in my case to be sure they had
                >resected the whole thing. I am right handed, so the left side of the brain
                >was involved in speech (if someone is left handed, the right side of the
                >brain would be more involved in speech). I�m not sure which you are. I
                >mention these items because there may be similarities in my experience to
                >yours. No two people, as I am sure you know as a PT, can compare notes
                >exactly, but hopefully my experience with this will make this less of an
                >�unknown� for you.
                >
                >
                >I remember being very confused when I awoke. My head did not hurt. I
                >remember people coming to visit me the first day, right after surgery. I
                >remember not really trying to talk, but just listening. The second day, I
                >remember when I first spoke, it was very monotoned � no inflection in my
                >speech at all and my words didn�t come out exactly right. Example: when I
                >tried to say �Where is my ______?� it would come out
                >�Where...is...me...____�. Difficulty wordfinding and I sounded like a
                >little leprechaun because it always came out �me� instead of �my.�
                >
                >
                >Each day, I was there a total of 7 days, family would say I looked a little
                >better. As the days moved on, I felt clearer with each day. Things were
                >like slow motion and it took me a while to do things, but I remember
                >feeling
                >very happy. Happy to be alive, happy to be over the surgery, happy to see
                >my family, happy about everything. At first, I couldn�t use my right hand,
                >so I learned to do things with the left hand. (like eating, signing with
                >an
                >X, etc.) One therapist after another would come into the room. Speech
                >therapy, occupational therapy, physical therapy. It struck me a bit hard
                >that I went from publishing articles on HIV seroprevalence to trying to put
                >different shaped pegs into holes. It struck me a bit harder that I
                >actually
                >had some difficulty with it! It was hard to think a thought through from
                >beginning to end without getting lost somewhere in the middle. Sometimes,
                >I
                >would hear a sentence and I would listen intently, but by the time someone
                >got to the end of a sentence, I couldn�t remember the beginning of the
                >sentence so I missed a lot. But each day this improved. There was a sense
                >of �numbness� to all of it, so it wasn�t as difficult as it might seem.
                >
                >But, mostly I want you to know that IT GETS BETTER. Every day something
                >improved. Gradually, inflection came back into my speech. I went from
                >walking with someone holding me up by a strap to walking with a walker,
                >then
                >with a cane, then holding onto walls, and now without any assistance.
                >Thought processes gradually returned. I am now ambidextrous and use my
                >right hand again for most things. My thought processes are not as quick as
                >they used to be, but I can keep up and most people don�t realize I�m
                >struggling sometimes. In my case, I have kind of forgotten the speed at
                >which I used to process thoughts, so I have become comfortable with my
                >limitations.
                >
                > >>>>�What's the possibility that I won't be able function after and in
                > >>>>what ways and for how long?
                >When there is a long "picking and sucking" session in the brain, is there a
                >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                >swelling or from the sutures or staples holding the skin and skull together
                >back...<<<<
                >
                >I made comments to some of this above. As far as pain in my head, I
                >remember not being able to lie on that side of my head for a long time. I
                >wouldn�t say it hurt, but it was tender to lay on and probably some of it
                >was fear on my part. To this day, 6 years after my surgery, I tend to be
                >over-protective of this side of my head. If something looks like it�s
                >going
                >to fall or something, I instinctually guard that side. Pain at the
                >surgical
                >area was not something I felt at all. It did not hurt to have the staples
                >removed. The sensation around the incision is still different to me. I
                >still have tenderness along the incision, but I can brush my hair, shampoo,
                >etc. without any discomfort. There are areas of depression (I call them
                >coin holders) along the incision where it feels like someone stuck a
                >fingertip into a soft pumpkin or something... But if actual pain in your
                >head is a concern of yours, in my opinion, that was a breeze. It�s
                >different with abdominal surgery or something like that when there are
                >muscles you have to move around the affected area. The scalp is a pretty
                >good area for surgery, in a way, because you don�t really use those muscles
                >for many day to day activities as you would other parts of the body. As
                >far
                >as actual brain swelling, they will most likely start steroids, maybe even
                >before your surgery, to keep brain swelling down.
                >
                >
                >
                > >>>>"My usual advice... take things one day at a time... be good to
                > >>>>yourself by taking breaks when you need them and not trying to push
                >yourself too quickly... be patient with yourself." Is good advice I know,
                >I
                >am afraid it is hard for me to interpret it.<<<<
                >
                >I�m glad you asked for clarification on this. I didn�t have enough time to
                >write in my previous email what I meant and can see it would be hard to
                >interpret it.
                >
                >Here�s what I mean:
                >
                >�take things one day at a time�: This is not like healing from a C-section
                >or appendectomy. Don�t bite off a big piece of your recovery and just
                >focus
                >on the long term goals. You will be recovering from this for a while, so
                >try to make several short term goals for yourself so you can see your own
                >progress. If you can�t make it from the livingroom to the bedroom without
                >stopping for a break, shoot for making it � of the way, then � of the way,
                >then � of the way, etc. If you can�t read a novel right away, try short
                >magazine articles, then longer articles, then essays, then short stories,
                >then longer short stories, then short novels, etc.
                >
                >
                >� be good to yourself by taking breaks when you need them and not trying to
                >push yourself too quickly�. When you get home, family and friends may come
                >by to visit. You may feel like you have to make them feel comfortable by
                >showing them how well you are and how �back to normal� you are. You may
                >feel you need to say �would you like something to drink?� or when they
                >start
                >talking or asking questions, you may feel you need to do whatever you can
                >to
                >keep up with conversations and concentration on their statements... even
                >when you feel like you could fall dead asleep because their visit has tired
                >you so much.
                >Don�t!!!!!! Your real friends will understand when you say �If you
                >wouldn�t
                >mind, I�m going to go take a nap. I�m starting to feel very tired.� You
                >may find that you need to do this. This is what I mean by being good to
                >yourself and not trying to push yourself too much. Maybe you can have a
                >cue
                >for your family like a sigh or something, a phrase, that they would know
                >when you are getting tired and help you out with this.
                >
                > >>>> Wow, I didn't plan that whine session...sorry.
                >What I meant to say is that I am worried since I don't bounce back like I
                >used to, but still try to, what should I really do after surgery?<<<<
                >
                >This was not a whine session, you were expressing your fears and concerns
                >and that is GOOD. As for bouncing back, you are halfway there because you
                >WANT to. Now, all you have to do is your best.
                >
                >I hope some of this helped. Remember, these are just my experiences and I
                >can�t speak for everyone. It�s a rough journey, but I feel strengthened,
                >wiser and more appreciative of what I have for having taken that journey.
                >
                >I can�t wait to hear how your experience is.
                >
                > Keep those thoughts coming,
                >
                >
                >Trisha
                >Trisha Williams, R.N.
                >BrainSurgery@Yahoo Group Founder/Moderator
                >4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99
                >Living, laughing and loving better than ever!
                >
                >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                >Behalf Of Catherine J. Ilson
                >Sent: Thursday, April 21, 2005 6:24 PM
                >To: BrainSurgery@yahoogroups.com
                >Subject: RE: Approaching surgery, thanks all
                >
                >Dear Trisha,
                >
                >Thanks so much for your support. (Your name seems familiar too, but I am
                >afraid my visual memory seems to be in the dumper.)
                >
                >Amazing how much support you can get from "strangers" - it is so helpful to
                >hear from people how are struggling with the same things, I am sure I would
                >not be up to all this without everyone's help and insights and "rah, rahs".
                >It does feel like a team in a way, all pulling for each other, all feel the
                >ups and downs together. Makes the ride more meaningful, overall more
                >positive.
                >
                >I think the things I want most is to be prepared, I don't do so well with
                >surprises.
                >I seem to panic first when faced with an unexpected uncomfortable situation
                >or pain ,(I am sure it is wired in most of us to react that way to surprise
                >- I am sure it was very helpful for us when we where protecting ourselves
                >from lions, snakes and the like in the wild...) So, It is really been
                >helpful to hear stories and the list of possible expectations.
                >
                >In my case, a very large tumor- not a solid mass I'm told but more like
                >"toothpaste in a sponge", in my left temporal lobe, suggests a very long
                >surgery.
                >What can I expect to go through from beginning to end? (Laying in one
                >position for 12 hours?) (I remember after my biopsy I had have the frame
                >screwed in my head for hours because the surgeon was delayed with another
                >surgery, when I was finally done I had the worst headache I ever remembered
                >and pain meds were not given for a long time...) What's the possibility
                >that
                >I won't be able function after and in what ways and for how long?
                >When there is a long "picking and sucking" session in the brain, is there a
                >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                >swelling or from the sutures or staples holding the skin and skull together
                >back...
                >
                >What about function? (I know no one knows the answer to this, even the
                >doctor in advance) Just wondering what are the similar situations people
                >have gone through that I can compare with. Is it really possible to be
                >talking fine after the surgery?
                >
                >Has anyone out there have this kind of tumor in the same area?
                >
                >I have heard from some people who have had wonderful successful surgeries,
                >and are back to work in two weeks, or almost back to themselves in a month,
                >then I hear about opposite stories...
                >I think the awake surgeries seem to leave people much better than the
                >asleep
                >surgeries, Is that an incorrect assumption?
                >
                >One you say
                >"My usual advice... take things one day at a time... be good to yourself by
                >taking breaks when you need them and not trying to push yourself too
                >quickly... be patient with yourself."
                >Is good advice I know, I am afraid it is hard for me to interpret it.
                >
                >I tend to feel better when I push a little, keeps my mind off of the aches
                >and pains and makes me feel good for trying.
                >I have fibromalgia (I even feel embarrassed to say it), which I dismissed
                >for a long time as some non-dx for stress.
                >I used to play tennis, take martial arts classes, riding, and other
                >activities that I always felt good after working out. Even if I got out of
                >shape and got back to it (like after giving birth) I would be sore for a
                >couple of weeks but then get stronger and could add to my workout.
                >
                >But after trying to take up some old activities (I tried martial arts,
                >tennis ,then slowed it down with yoga (way too slow for me usually), and
                >then even tai chi (really slow!) and still I was sore after every mild
                >workout. I have been walking 2 miles every day almost since my dx just to
                >keep moving but I haven't gotten stronger or faster, never able to increase
                >the pace or impact. That has never happened to me.
                >Of course, I am older now so I accept some of it as just an old body, but
                >still...
                >It all started after my chemo, steroids (now I have terrible osteoporosis),
                >Thalidomide and Tamoxifen ...
                >
                >Wow, I didn't plan that whine session...sorry.
                >What I meant to say is that I am worried since I don't bounce back like I
                >used to, but still try to, what should I really do after surgery?
                >
                >Sigh.
                >Thanks for asking:
                >"Is there anything we can do to help prepare you for your surgery?
                >Questions, concerns, etc?"
                >Maybe you didn't expect such a rambling reply!
                >
                >I guess the questions will keep coming. I know there isn't a formula, I
                >will
                >be just fine and deal as I go along.
                >I will have friends and family around and I will have a fantastic surgeon.
                >Still, all your input helps me.
                >
                >At lease I think it is all very interesting - the brain is such an amazing
                >thing.
                >
                >Take care to all,
                >
                >Catherine
                >
                >
                >-----Original Message-----
                >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                >Behalf Of Trisha Williams
                >Sent: Thursday, April 21, 2005 2:24 PM
                >To: BrainSurgery@yahoogroups.com
                >Subject: Re: Approaching surgery, thanks all
                >
                >Way to go, Catherine! I believe I met you at the FBTA conference (which I
                >agree was wonderful). Congratulations on being so proactive at preparing
                >yourself for your surgery not only by reaching out for emotional support
                >but
                >by educating yourself as well. I love to see people empowering themselves
                >to advocate for themselves. Good job.
                >
                >My usual advice... take things one day at a time... be good to yourself by
                >taking breaks when you need them and not trying to push yourself too
                >quickly... be patient with yourself.
                >
                >Most importantly, let us know how everything goes!!!!!!
                >
                >Is there anything we can do to help prepare you for your surgery?
                >Questions, concerns, etc?
                >-Trisha
                >
                >--- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
                ><CILSON@c...> wrote:
                > > Dear All,
                > >
                > > I have read in awe for 3 years of all the brave people having
                >brain surgery. I was very happy to hear how in most cases it seemed to help
                >extend and/or improve people's life and I got great inspiration from the
                >stories of courageous survivors going through such a scary procedure.
                > > I also read to learn anything I could about surgery for the time
                >when I may need the surgery (when the tumor growth was causing more
                >dangerous problems than the language and memory problems that would result
                >from the surgery.)>
                > > In some way I was also jealous that my tumor was considered
                >inoperable -(what an odd thought, to be jealous not be able to have brain
                >surgery) I know most of you, especially the all "inoperable" people,
                >understand what I mean.
                > > I also hoped that some day there would be a way to have surgery
                >without the serious dangerous "side effects" I was warned about.
                > > > It seems that time is here.
                > > > After all the searching, and reading on these lists (which is
                >where I learned about the FBTA conference- thank you all) I found surgeons
                >who are confident they can remove my tumor. I also met other survivors who
                >have had great success with these procedures (awake surgery, intra MRI's,
                >brain mapping...) adding to my confidence.
                > > I will be having several tests done next week (fMRI, WADA, MRI
                >Spec) and am told that if it all looks as they expect, they would suggest
                >doing the surgery as soon as May 2nd (but I could always delay...)
                > > > I have gotten some wonderful supportive and informative emails all
                >about the tests, the surgery and the recovery. The information is
                >invaluable
                >to me because of the information starved kind of person I am. The more I
                >know, the more at ease I am. The more I can be prepared - for good or bad-
                >the better I handle things.
                > > > So I wanted to thank all of you who wrote to me, I know it takes
                >time and energy to write- something we all struggle with- so I want to
                >thank you for the effort and support. It means so much to me.
                > >
                > > Thanks to all,
                > > (I will also add, that the lines are still open, or "keep the
                >letters and calls coming!" There is no limit to the amount of information I
                >am
                > > interested in getting!)
                > >
                > > Wishing you all the best,
                > > Catherine (45)
                > > (Oligo List facilitator)
                > >
                > > 4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q
                >Deletion (6x4.5) L temporal lobe, "inoperable".
                > > 5/2002: PCV for 6 months;
                > > 1/2003: Antineoplastons for 12 months;
                > > 1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
                > > Thalidomide,and supplement: Squalamax.
                > > MRI's continue stable.
                > > 1/2005: Stopping all treatment- "wait and watch" (per Duke)
                >except: Keppra (for seizures) and Namenda (for memory).
                > > 1/2005: Began Neurofeedback training for sleep problems,clearer
                >thinking,and depression. (It has helped!)
                > > 3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled
                >testing: fMRI, WADA 4/26/05...
                > > m/o Alex (16), Kira (15), Jake (11)
                >
                >
                >
                >
                >
                > _____
                >
                >Yahoo! Groups Links
                >
                >* To visit your group on the web, go to:
                >http://groups.yahoo.com/group/BrainSurgery/
                >
                >* To unsubscribe from this group, send an email to:
                >BrainSurgery-unsubscribe@yahoogroups.com
                ><mailto:BrainSurgery-unsubscribe@yahoogroups.com?subject=Unsubscribe>
                >
                >* Your use of Yahoo! Groups is subject to the Yahoo!
                ><http://docs.yahoo.com/info/terms/> Terms of Service.
                >
                >
                >
                >[Non-text portions of this message have been removed]
                >
                >
                >
                >
                >
                >Yahoo! Groups Links
                >
                >
                >
                >
                >
                >
                >
                >

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              • Steve Lightfoot
                I understand and know what it is like to go through it all. I am a 53yr old man that never shows any out side emotions. Well I will be honest every time I
                Message 7 of 16 , Apr 23 6:58 AM
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                  I understand and know what it is like to go through it all. I am a 53yr old man that never shows any out side emotions. Well I will be honest every time I would talk to anyone on the phone tears would flow. I knew even th-ow the doctors said I had a 95% chance of coming through this there is just no for sure level of any out come. I still have problems on my left side and they put a shunt to drain off any extra pressure. Gods knows how scared I was. I didn't have any family or great friend to support me at all. It was 30 days in ICU and 30 day pre surg. and then another 30 days to stabilize. To me it was a personal living hell.It took me many months to remember things as recall and I lost my hearing on my left side. No one can tell me if I will ever get this back . I would guess its different for everyone. Once is all I needed. Trust me I know the tensions that maybe building I hope your doctors have all given you good odds.
                  Its better to still be here with everyone than a though in someones hart.Still working on the healing even th-ow its very hard some days it still brings tears but I must fight back everyday
                  I just wanted to pour out my feelings to the folks who understand.

                  Good luck to all you will make it
                  Steve Lightfoot
                  proformsports@...
                  Hope Shasha <jjjth@...> wrote:

                  Dear Catherine,

                  I don't have time to read many of the posts, but I have been really trying
                  to read yours b/c I can so relate to what you are going through. I have a 14
                  yr. old son, Justin who is in a very similar situation as you. He has an
                  inoperable tumor in the left posterior frontal lobe dx 9/04. We are flying
                  to DC next week to meet with Dr. Myseros at Childrens National who is very
                  optimistic about removing it.
                  I just wanted you to know that I am supporting you, thinking about you and
                  wish you a successful surgery.

                  All the best to you,
                  Hope Shasha

                  >From: "Catherine J. Ilson"
                  >Reply-To: BrainSurgery@yahoogroups.com
                  >To:

                  >Subject: RE: Approaching surgery, thanks all!
                  >Date: Fri, 22 Apr 2005 19:39:12 -0400
                  >
                  > Dear Trisha,
                  >
                  >Thank you so much for the feedback. Every bit of it is very helpful for me
                  >(and always so interesting!)
                  >
                  >It is odd, many of the stories are so similar to my first and second
                  >hospitalizations.
                  >
                  >I had a partial seizure during in the night (didn't know what it was at the
                  >time) and when I woke I was unable to speak correctly (all the words I was
                  >trying to say came out all mixed up) I eventually agreed to go to the ER
                  >and
                  >ended getting the MRI, dx and then in for the biopsy. They kept me in the
                  >hospital almost a week for all that. My language was still a problem but
                  >improving.
                  >
                  >I remember the biopsy was overall not that bad, but after my head hurt
                  >terribly and I didn�t get any pain meds for over an hour- I almost passed
                  >out from the pain.
                  >I guess that is the kind of thing I get worried about. (And my sister- the
                  >RN- was running all over to get the nurses to get the meds, and they
                  >couldn't because the surgeon didn't leave the order...)
                  >
                  >Three weeks later I was feeling almost normal and I had a grand mal while
                  >driving to work...
                  >I pulled over when I felt it coming on and called someone and it took them
                  >over 2 hours to find me...all the while I was having seizures.
                  >I was in NICU for 3 days and finally started to rouse and was moved to a
                  >regular room. A few days later for me to start to understand part of
                  >conversations around me. It was odd, I felt fine, but my mind was not
                  >working.
                  >Very interesting.
                  >I couldn't talk easily, write, read, watch TV, and almost anything that
                  >took
                  >concentration was out for a long while. All the things I did with ease
                  >before now seemed forgotten, or oddly missing in part.
                  >
                  >Oddly, I could still sign (I was a sign language interpreter for 15 years)
                  >but no one around me understood me, and didn't know how to sign...I often
                  >sign to myself when I can't come up with a word and then can remember the
                  >English word I am looking for. The other thing, I can often whisper the
                  >word
                  >I am looking for or having trouble pronouncing and gradually say it louder
                  >and I get it right.
                  >So interesting.
                  >
                  >I did some speech therapy and gradually improved and kept finding ways to
                  >adapt but never returned to where I was before. It was sad for me.
                  >
                  >Recently, after learning about neurofeedback training, I decided to try it
                  >and was amazed about how much of my old mental clarity, concentration and
                  >language (reading and writing) and especially my mood returned.
                  >I am much more confident that if I have trouble after surgery the
                  >neurofeedback will help me.
                  >
                  >
                  >I am meeting with Dr. Black on Monday (the first time since talking with
                  >him
                  >at the conference) and am really looking forward to that.
                  >
                  >I have so many questions that are specific to my situation that I think he
                  >can address - much he did when we talked first- but because there has so
                  >much time since we talked, and have never spoken since I became his
                  >"patient" I know it will add the final calm to the whole thing.
                  >I found him very articulate and open and never made me feel uncomfortable
                  >asking questions. The right kind of surgeon for me. (Plus he was so
                  >fascinated by my symptoms, and the lack of them, and was very interesting
                  >mapping my brain- ya gotta love the guy!)
                  >
                  >I will have my laptop with my when I go to Boston so I will plan to check
                  >in
                  >on the Lists,
                  >Thanks everyone for all the help, information and support.
                  >
                  >Best wishes,
                  >Catherine
                  >
                  >
                  >-----Original Message-----
                  >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                  >Behalf Of Patricia Williams
                  >Sent: Friday, April 22, 2005 11:09 AM
                  >To: BrainSurgery@yahoogroups.com
                  >Subject: RE: Approaching surgery, thanks all
                  >
                  >
                  >Catherine �
                  >Some thoughts, answers, comments about your response:
                  > >>>>�Amazing how much support you can get from "strangers"�<<<<<:
                  >I know what you mean about this!!! It�s been my experience that I�ve
                  >received the most support from people I didn�t know at all or people I met
                  >on line and had never met face-to-face (yet). To me, we�re like �family�
                  >because what we have in common is relatively rare. It�s as though we are
                  >all from earth and have met on another planet... just being from �earth�
                  >would make us �kin�. (and now that you totally think I�m crazy, I�ll go
                  >on...)
                  >
                  > >>>>�What can I expect to go through from beginning to end? (Laying in
                  > >>>>one position for 12 hours?)�<<<<
                  >My experience with this was I was just a little sore (my arm had been
                  >positioned in such a way that I felt like I had been pitching a ball game
                  >all night). After the anesthesia and with the pain medications they must
                  >have given me (since I don�t recall any pain), the first few days are
                  >pretty
                  >blurry. I actually recall the IVs and intravenous meds as being the worst
                  >part of it all since I have such bad veins and they had to keep restarting
                  >the lines over and over. Hopefully, the fact that this is my worst memory
                  >of it should put it in perspective a bit.
                  >
                  >
                  >My surgery was also in the left temporal area (also left parietal and left
                  >frontal). My tumor was a solid mass though, unlike yours. There was a rim
                  >of brain tissue removed with the tumor in my case to be sure they had
                  >resected the whole thing. I am right handed, so the left side of the brain
                  >was involved in speech (if someone is left handed, the right side of the
                  >brain would be more involved in speech). I�m not sure which you are. I
                  >mention these items because there may be similarities in my experience to
                  >yours. No two people, as I am sure you know as a PT, can compare notes
                  >exactly, but hopefully my experience with this will make this less of an
                  >�unknown� for you.
                  >
                  >
                  >I remember being very confused when I awoke. My head did not hurt. I
                  >remember people coming to visit me the first day, right after surgery. I
                  >remember not really trying to talk, but just listening. The second day, I
                  >remember when I first spoke, it was very monotoned � no inflection in my
                  >speech at all and my words didn�t come out exactly right. Example: when I
                  >tried to say �Where is my ______?� it would come out
                  >�Where...is...me...____�. Difficulty wordfinding and I sounded like a
                  >little leprechaun because it always came out �me� instead of �my.�
                  >
                  >
                  >Each day, I was there a total of 7 days, family would say I looked a little
                  >better. As the days moved on, I felt clearer with each day. Things were
                  >like slow motion and it took me a while to do things, but I remember
                  >feeling
                  >very happy. Happy to be alive, happy to be over the surgery, happy to see
                  >my family, happy about everything. At first, I couldn�t use my right hand,
                  >so I learned to do things with the left hand. (like eating, signing with
                  >an
                  >X, etc.) One therapist after another would come into the room. Speech
                  >therapy, occupational therapy, physical therapy. It struck me a bit hard
                  >that I went from publishing articles on HIV seroprevalence to trying to put
                  >different shaped pegs into holes. It struck me a bit harder that I
                  >actually
                  >had some difficulty with it! It was hard to think a thought through from
                  >beginning to end without getting lost somewhere in the middle. Sometimes,
                  >I
                  >would hear a sentence and I would listen intently, but by the time someone
                  >got to the end of a sentence, I couldn�t remember the beginning of the
                  >sentence so I missed a lot. But each day this improved. There was a sense
                  >of �numbness� to all of it, so it wasn�t as difficult as it might seem.
                  >
                  >But, mostly I want you to know that IT GETS BETTER. Every day something
                  >improved. Gradually, inflection came back into my speech. I went from
                  >walking with someone holding me up by a strap to walking with a walker,
                  >then
                  >with a cane, then holding onto walls, and now without any assistance.
                  >Thought processes gradually returned. I am now ambidextrous and use my
                  >right hand again for most things. My thought processes are not as quick as
                  >they used to be, but I can keep up and most people don�t realize I�m
                  >struggling sometimes. In my case, I have kind of forgotten the speed at
                  >which I used to process thoughts, so I have become comfortable with my
                  >limitations.
                  >
                  > >>>>�What's the possibility that I won't be able function after and in
                  > >>>>what ways and for how long?
                  >When there is a long "picking and sucking" session in the brain, is there a
                  >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                  >swelling or from the sutures or staples holding the skin and skull together
                  >back...<<<<
                  >
                  >I made comments to some of this above. As far as pain in my head, I
                  >remember not being able to lie on that side of my head for a long time. I
                  >wouldn�t say it hurt, but it was tender to lay on and probably some of it
                  >was fear on my part. To this day, 6 years after my surgery, I tend to be
                  >over-protective of this side of my head. If something looks like it�s
                  >going
                  >to fall or something, I instinctually guard that side. Pain at the
                  >surgical
                  >area was not something I felt at all. It did not hurt to have the staples
                  >removed. The sensation around the incision is still different to me. I
                  >still have tenderness along the incision, but I can brush my hair, shampoo,
                  >etc. without any discomfort. There are areas of depression (I call them
                  >coin holders) along the incision where it feels like someone stuck a
                  >fingertip into a soft pumpkin or something... But if actual pain in your
                  >head is a concern of yours, in my opinion, that was a breeze. It�s
                  >different with abdominal surgery or something like that when there are
                  >muscles you have to move around the affected area. The scalp is a pretty
                  >good area for surgery, in a way, because you don�t really use those muscles
                  >for many day to day activities as you would other parts of the body. As
                  >far
                  >as actual brain swelling, they will most likely start steroids, maybe even
                  >before your surgery, to keep brain swelling down.
                  >
                  >
                  >
                  > >>>>"My usual advice... take things one day at a time... be good to
                  > >>>>yourself by taking breaks when you need them and not trying to push
                  >yourself too quickly... be patient with yourself." Is good advice I know,
                  >I
                  >am afraid it is hard for me to interpret it.<<<<
                  >
                  >I�m glad you asked for clarification on this. I didn�t have enough time to
                  >write in my previous email what I meant and can see it would be hard to
                  >interpret it.
                  >
                  >Here�s what I mean:
                  >
                  >�take things one day at a time�: This is not like healing from a C-section
                  >or appendectomy. Don�t bite off a big piece of your recovery and just
                  >focus
                  >on the long term goals. You will be recovering from this for a while, so
                  >try to make several short term goals for yourself so you can see your own
                  >progress. If you can�t make it from the livingroom to the bedroom without
                  >stopping for a break, shoot for making it � of the way, then � of the way,
                  >then � of the way, etc. If you can�t read a novel right away, try short
                  >magazine articles, then longer articles, then essays, then short stories,
                  >then longer short stories, then short novels, etc.
                  >
                  >
                  >� be good to yourself by taking breaks when you need them and not trying to
                  >push yourself too quickly�. When you get home, family and friends may come
                  >by to visit. You may feel like you have to make them feel comfortable by
                  >showing them how well you are and how �back to normal� you are. You may
                  >feel you need to say �would you like something to drink?� or when they
                  >start
                  >talking or asking questions, you may feel you need to do whatever you can
                  >to
                  >keep up with conversations and concentration on their statements... even
                  >when you feel like you could fall dead asleep because their visit has tired
                  >you so much.
                  >Don�t!!!!!! Your real friends will understand when you say �If you
                  >wouldn�t
                  >mind, I�m going to go take a nap. I�m starting to feel very tired.� You
                  >may find that you need to do this. This is what I mean by being good to
                  >yourself and not trying to push yourself too much. Maybe you can have a
                  >cue
                  >for your family like a sigh or something, a phrase, that they would know
                  >when you are getting tired and help you out with this.
                  >
                  > >>>> Wow, I didn't plan that whine session...sorry.
                  >What I meant to say is that I am worried since I don't bounce back like I
                  >used to, but still try to, what should I really do after surgery?<<<<
                  >
                  >This was not a whine session, you were expressing your fears and concerns
                  >and that is GOOD. As for bouncing back, you are halfway there because you
                  >WANT to. Now, all you have to do is your best.
                  >
                  >I hope some of this helped. Remember, these are just my experiences and I
                  >can�t speak for everyone. It�s a rough journey, but I feel strengthened,
                  >wiser and more appreciative of what I have for having taken that journey.
                  >
                  >I can�t wait to hear how your experience is.
                  >
                  > Keep those thoughts coming,
                  >
                  >
                  >Trisha
                  >Trisha Williams, R.N.
                  >BrainSurgery@Yahoo Group Founder/Moderator
                  >4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99
                  >Living, laughing and loving better than ever!
                  >
                  >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                  >Behalf Of Catherine J. Ilson
                  >Sent: Thursday, April 21, 2005 6:24 PM
                  >To: BrainSurgery@yahoogroups.com
                  >Subject: RE: Approaching surgery, thanks all
                  >
                  >Dear Trisha,
                  >
                  >Thanks so much for your support. (Your name seems familiar too, but I am
                  >afraid my visual memory seems to be in the dumper.)
                  >
                  >Amazing how much support you can get from "strangers" - it is so helpful to
                  >hear from people how are struggling with the same things, I am sure I would
                  >not be up to all this without everyone's help and insights and "rah, rahs".
                  >It does feel like a team in a way, all pulling for each other, all feel the
                  >ups and downs together. Makes the ride more meaningful, overall more
                  >positive.
                  >
                  >I think the things I want most is to be prepared, I don't do so well with
                  >surprises.
                  >I seem to panic first when faced with an unexpected uncomfortable situation
                  >or pain ,(I am sure it is wired in most of us to react that way to surprise
                  >- I am sure it was very helpful for us when we where protecting ourselves
                  >from lions, snakes and the like in the wild...) So, It is really been
                  >helpful to hear stories and the list of possible expectations.
                  >
                  >In my case, a very large tumor- not a solid mass I'm told but more like
                  >"toothpaste in a sponge", in my left temporal lobe, suggests a very long
                  >surgery.
                  >What can I expect to go through from beginning to end? (Laying in one
                  >position for 12 hours?) (I remember after my biopsy I had have the frame
                  >screwed in my head for hours because the surgeon was delayed with another
                  >surgery, when I was finally done I had the worst headache I ever remembered
                  >and pain meds were not given for a long time...) What's the possibility
                  >that
                  >I won't be able function after and in what ways and for how long?
                  >When there is a long "picking and sucking" session in the brain, is there a
                  >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                  >swelling or from the sutures or staples holding the skin and skull together
                  >back...
                  >
                  >What about function? (I know no one knows the answer to this, even the
                  >doctor in advance) Just wondering what are the similar situations people
                  >have gone through that I can compare with. Is it really possible to be
                  >talking fine after the surgery?
                  >
                  >Has anyone out there have this kind of tumor in the same area?
                  >
                  >I have heard from some people who have had wonderful successful surgeries,
                  >and are back to work in two weeks, or almost back to themselves in a month,
                  >then I hear about opposite stories...
                  >I think the awake surgeries seem to leave people much better than the
                  >asleep
                  >surgeries, Is that an incorrect assumption?
                  >
                  >One you say
                  >"My usual advice... take things one day at a time... be good to yourself by
                  >taking breaks when you need them and not trying to push yourself too
                  >quickly... be patient with yourself."
                  >Is good advice I know, I am afraid it is hard for me to interpret it.
                  >
                  >I tend to feel better when I push a little, keeps my mind off of the aches
                  >and pains and makes me feel good for trying.
                  >I have fibromalgia (I even feel embarrassed to say it), which I dismissed
                  >for a long time as some non-dx for stress.
                  >I used to play tennis, take martial arts classes, riding, and other
                  >activities that I always felt good after working out. Even if I got out of
                  >shape and got back to it (like after giving birth) I would be sore for a
                  >couple of weeks but then get stronger and could add to my workout.
                  >
                  >But after trying to take up some old activities (I tried martial arts,
                  >tennis ,then slowed it down with yoga (way too slow for me usually), and
                  >then even tai chi (really slow!) and still I was sore after every mild
                  >workout. I have been walking 2 miles every day almost since my dx just to
                  >keep moving but I haven't gotten stronger or faster, never able to increase
                  >the pace or impact. That has never happened to me.
                  >Of course, I am older now so I accept some of it as just an old body, but
                  >still...
                  >It all started after my chemo, steroids (now I have terrible osteoporosis),
                  >Thalidomide and Tamoxifen ...
                  >
                  >Wow, I didn't plan that whine session...sorry.
                  >What I meant to say is that I am worried since I don't bounce back like I
                  >used to, but still try to, what should I really do after surgery?
                  >
                  >Sigh.
                  >Thanks for asking:
                  >"Is there anything we can do to help prepare you for your surgery?
                  >Questions, concerns, etc?"
                  >Maybe you didn't expect such a rambling reply!
                  >
                  >I guess the questions will keep coming. I know there isn't a formula, I
                  >will
                  >be just fine and deal as I go along.
                  >I will have friends and family around and I will have a fantastic surgeon.
                  >Still, all your input helps me.
                  >
                  >At lease I think it is all very interesting - the brain is such an amazing
                  >thing.
                  >
                  >Take care to all,
                  >
                  >Catherine
                  >
                  >
                  >-----Original Message-----
                  >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                  >Behalf Of Trisha Williams
                  >Sent: Thursday, April 21, 2005 2:24 PM
                  >To: BrainSurgery@yahoogroups.com
                  >Subject: Re: Approaching surgery, thanks all
                  >
                  >Way to go, Catherine! I believe I met you at the FBTA conference (which I
                  >agree was wonderful). Congratulations on being so proactive at preparing
                  >yourself for your surgery not only by reaching out for emotional support
                  >but
                  >by educating yourself as well. I love to see people empowering themselves
                  >to advocate for themselves. Good job.
                  >
                  >My usual advice... take things one day at a time... be good to yourself by
                  >taking breaks when you need them and not trying to push yourself too
                  >quickly... be patient with yourself.
                  >
                  >Most importantly, let us know how everything goes!!!!!!
                  >
                  >Is there anything we can do to help prepare you for your surgery?
                  >Questions, concerns, etc?
                  >-Trisha
                  >
                  >--- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
                  > wrote:
                  > > Dear All,
                  > >
                  > > I have read in awe for 3 years of all the brave people having
                  >brain surgery. I was very happy to hear how in most cases it seemed to help
                  >extend and/or improve people's life and I got great inspiration from the
                  >stories of courageous survivors going through such a scary procedure.
                  > > I also read to learn anything I could about surgery for the time
                  >when I may need the surgery (when the tumor growth was causing more
                  >dangerous problems than the language and memory problems that would result
                  >from the surgery.)>
                  > > In some way I was also jealous that my tumor was considered

                  === message truncated ===
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                • Patricia Williams
                  I think Steve sums up the most important aspect of our strength together and our gift to each other when he says I just wanted to pour out my feelings to the
                  Message 8 of 16 , Apr 23 8:03 AM
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                    I think Steve sums up the most important aspect of our strength together and
                    our gift to each other when he says "I just wanted to pour out my feelings
                    to the folks who understand."

                    It is the understanding we have for each other which cannot be found
                    anywhere but with other brain tumor patients. That is the one most
                    important thing we share.

                    I'm so glad you are all here to bring that piece here and make it happen.

                    I appreciate each of you every day for being there. It is such a comfort
                    knowing I always have a place to turn to when I feel frustrated, sad,
                    hopeless, scared or just "crazy".

                    Just a "thanks" from me.

                    Love and prayers to all,
                    Trisha

                    -----Original Message-----
                    From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                    Behalf Of Steve Lightfoot
                    Sent: Saturday, April 23, 2005 9:58 AM
                    To: BrainSurgery@yahoogroups.com
                    Subject: RE: Approaching surgery, thanks all!


                    I understand and know what it is like to go through it all. I am a 53yr old
                    man that never shows any out side emotions. Well I will be honest every time
                    I would talk to anyone on the phone tears would flow. I knew even th-ow the
                    doctors said I had a 95% chance of coming through this there is just no for
                    sure level of any out come. I still have problems on my left side and they
                    put a shunt to drain off any extra pressure. Gods knows how scared I was. I
                    didn't have any family or great friend to support me at all. It was 30 days
                    in ICU and 30 day pre surg. and then another 30 days to stabilize. To me it
                    was a personal living hell.It took me many months to remember things as
                    recall and I lost my hearing on my left side. No one can tell me if I will
                    ever get this back . I would guess its different for everyone. Once is all I
                    needed. Trust me I know the tensions that maybe building I hope your doctors
                    have all given you good odds.
                    Its better to still be here with everyone than a though in someones
                    hart.Still working on the healing even th-ow its very hard some days it
                    still brings tears but I must fight back everyday
                    I just wanted to pour out my feelings to the folks who understand.

                    Good luck to all you will make it
                    Steve Lightfoot
                    proformsports@...
                    Hope Shasha <jjjth@...> wrote:

                    Dear Catherine,

                    I don't have time to read many of the posts, but I have been really trying
                    to read yours b/c I can so relate to what you are going through. I have a 14

                    yr. old son, Justin who is in a very similar situation as you. He has an
                    inoperable tumor in the left posterior frontal lobe dx 9/04. We are flying
                    to DC next week to meet with Dr. Myseros at Childrens National who is very
                    optimistic about removing it.
                    I just wanted you to know that I am supporting you, thinking about you and
                    wish you a successful surgery.

                    All the best to you,
                    Hope Shasha

                    >From: "Catherine J. Ilson"
                    >Reply-To: BrainSurgery@yahoogroups.com
                    >To:

                    >Subject: RE: Approaching surgery, thanks all!
                    >Date: Fri, 22 Apr 2005 19:39:12 -0400
                    >
                    > Dear Trisha,
                    >
                    >Thank you so much for the feedback. Every bit of it is very helpful for me
                    >(and always so interesting!)
                    >
                    >It is odd, many of the stories are so similar to my first and second
                    >hospitalizations.
                    >
                    >I had a partial seizure during in the night (didn't know what it was at the
                    >time) and when I woke I was unable to speak correctly (all the words I was
                    >trying to say came out all mixed up) I eventually agreed to go to the ER
                    >and
                    >ended getting the MRI, dx and then in for the biopsy. They kept me in the
                    >hospital almost a week for all that. My language was still a problem but
                    >improving.
                    >
                    >I remember the biopsy was overall not that bad, but after my head hurt
                    >terribly and I didn’t get any pain meds for over an hour- I almost passed
                    >out from the pain.
                    >I guess that is the kind of thing I get worried about. (And my sister- the
                    >RN- was running all over to get the nurses to get the meds, and they
                    >couldn't because the surgeon didn't leave the order...)
                    >
                    >Three weeks later I was feeling almost normal and I had a grand mal while
                    >driving to work...
                    >I pulled over when I felt it coming on and called someone and it took them
                    >over 2 hours to find me...all the while I was having seizures.
                    >I was in NICU for 3 days and finally started to rouse and was moved to a
                    >regular room. A few days later for me to start to understand part of
                    >conversations around me. It was odd, I felt fine, but my mind was not
                    >working.
                    >Very interesting.
                    >I couldn't talk easily, write, read, watch TV, and almost anything that
                    >took
                    >concentration was out for a long while. All the things I did with ease
                    >before now seemed forgotten, or oddly missing in part.
                    >
                    >Oddly, I could still sign (I was a sign language interpreter for 15 years)
                    >but no one around me understood me, and didn't know how to sign...I often
                    >sign to myself when I can't come up with a word and then can remember the
                    >English word I am looking for. The other thing, I can often whisper the
                    >word
                    >I am looking for or having trouble pronouncing and gradually say it louder
                    >and I get it right.
                    >So interesting.
                    >
                    >I did some speech therapy and gradually improved and kept finding ways to
                    >adapt but never returned to where I was before. It was sad for me.
                    >
                    >Recently, after learning about neurofeedback training, I decided to try it
                    >and was amazed about how much of my old mental clarity, concentration and
                    >language (reading and writing) and especially my mood returned.
                    >I am much more confident that if I have trouble after surgery the
                    >neurofeedback will help me.
                    >
                    >
                    >I am meeting with Dr. Black on Monday (the first time since talking with
                    >him
                    >at the conference) and am really looking forward to that.
                    >
                    >I have so many questions that are specific to my situation that I think he
                    >can address - much he did when we talked first- but because there has so
                    >much time since we talked, and have never spoken since I became his
                    >"patient" I know it will add the final calm to the whole thing.
                    >I found him very articulate and open and never made me feel uncomfortable
                    >asking questions. The right kind of surgeon for me. (Plus he was so
                    >fascinated by my symptoms, and the lack of them, and was very interesting
                    >mapping my brain- ya gotta love the guy!)
                    >
                    >I will have my laptop with my when I go to Boston so I will plan to check
                    >in
                    >on the Lists,
                    >Thanks everyone for all the help, information and support.
                    >
                    >Best wishes,
                    >Catherine
                    >
                    >
                    >-----Original Message-----
                    >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                    >Behalf Of Patricia Williams
                    >Sent: Friday, April 22, 2005 11:09 AM
                    >To: BrainSurgery@yahoogroups.com
                    >Subject: RE: Approaching surgery, thanks all
                    >
                    >
                    >Catherine –
                    >Some thoughts, answers, comments about your response:
                    > >>>>“Amazing how much support you can get from "strangers"”<<<<<:
                    >I know what you mean about this!!! It’s been my experience that I’ve
                    >received the most support from people I didn’t know at all or people I met
                    >on line and had never met face-to-face (yet). To me, we’re like “family”
                    >because what we have in common is relatively rare. It’s as though we are
                    >all from earth and have met on another planet... just being from “earth”
                    >would make us “kin”. (and now that you totally think I’m crazy, I’ll go
                    >on...)
                    >
                    > >>>>“What can I expect to go through from beginning to end? (Laying in
                    > >>>>one position for 12 hours?)”<<<<
                    >My experience with this was I was just a little sore (my arm had been
                    >positioned in such a way that I felt like I had been pitching a ball game
                    >all night). After the anesthesia and with the pain medications they must
                    >have given me (since I don’t recall any pain), the first few days are
                    >pretty
                    >blurry. I actually recall the IVs and intravenous meds as being the worst
                    >part of it all since I have such bad veins and they had to keep restarting
                    >the lines over and over. Hopefully, the fact that this is my worst memory
                    >of it should put it in perspective a bit.
                    >
                    >
                    >My surgery was also in the left temporal area (also left parietal and left
                    >frontal). My tumor was a solid mass though, unlike yours. There was a rim
                    >of brain tissue removed with the tumor in my case to be sure they had
                    >resected the whole thing. I am right handed, so the left side of the brain
                    >was involved in speech (if someone is left handed, the right side of the
                    >brain would be more involved in speech). I’m not sure which you are. I
                    >mention these items because there may be similarities in my experience to
                    >yours. No two people, as I am sure you know as a PT, can compare notes
                    >exactly, but hopefully my experience with this will make this less of an
                    >“unknown” for you.
                    >
                    >
                    >I remember being very confused when I awoke. My head did not hurt. I
                    >remember people coming to visit me the first day, right after surgery. I
                    >remember not really trying to talk, but just listening. The second day, I
                    >remember when I first spoke, it was very monotoned – no inflection in my
                    >speech at all and my words didn’t come out exactly right. Example: when I
                    >tried to say “Where is my ______?” it would come out
                    >“Where...is...me...____”. Difficulty wordfinding and I sounded like a
                    >little leprechaun because it always came out “me” instead of “my.”
                    >
                    >
                    >Each day, I was there a total of 7 days, family would say I looked a little
                    >better. As the days moved on, I felt clearer with each day. Things were
                    >like slow motion and it took me a while to do things, but I remember
                    >feeling
                    >very happy. Happy to be alive, happy to be over the surgery, happy to see
                    >my family, happy about everything. At first, I couldn’t use my right hand,
                    >so I learned to do things with the left hand. (like eating, signing with
                    >an
                    >X, etc.) One therapist after another would come into the room. Speech
                    >therapy, occupational therapy, physical therapy. It struck me a bit hard
                    >that I went from publishing articles on HIV seroprevalence to trying to put
                    >different shaped pegs into holes. It struck me a bit harder that I
                    >actually
                    >had some difficulty with it! It was hard to think a thought through from
                    >beginning to end without getting lost somewhere in the middle. Sometimes,
                    >I
                    >would hear a sentence and I would listen intently, but by the time someone
                    >got to the end of a sentence, I couldn’t remember the beginning of the
                    >sentence so I missed a lot. But each day this improved. There was a sense
                    >of “numbness” to all of it, so it wasn’t as difficult as it might seem.
                    >
                    >But, mostly I want you to know that IT GETS BETTER. Every day something
                    >improved. Gradually, inflection came back into my speech. I went from
                    >walking with someone holding me up by a strap to walking with a walker,
                    >then
                    >with a cane, then holding onto walls, and now without any assistance.
                    >Thought processes gradually returned. I am now ambidextrous and use my
                    >right hand again for most things. My thought processes are not as quick as
                    >they used to be, but I can keep up and most people don’t realize I’m
                    >struggling sometimes. In my case, I have kind of forgotten the speed at
                    >which I used to process thoughts, so I have become comfortable with my
                    >limitations.
                    >
                    > >>>>“What's the possibility that I won't be able function after and in
                    > >>>>what ways and for how long?
                    >When there is a long "picking and sucking" session in the brain, is there a
                    >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                    >swelling or from the sutures or staples holding the skin and skull together
                    >back...<<<<
                    >
                    >I made comments to some of this above. As far as pain in my head, I
                    >remember not being able to lie on that side of my head for a long time. I
                    >wouldn’t say it hurt, but it was tender to lay on and probably some of it
                    >was fear on my part. To this day, 6 years after my surgery, I tend to be
                    >over-protective of this side of my head. If something looks like it’s
                    >going
                    >to fall or something, I instinctually guard that side. Pain at the
                    >surgical
                    >area was not something I felt at all. It did not hurt to have the staples
                    >removed. The sensation around the incision is still different to me. I
                    >still have tenderness along the incision, but I can brush my hair, shampoo,
                    >etc. without any discomfort. There are areas of depression (I call them
                    >coin holders) along the incision where it feels like someone stuck a
                    >fingertip into a soft pumpkin or something... But if actual pain in your
                    >head is a concern of yours, in my opinion, that was a breeze. It’s
                    >different with abdominal surgery or something like that when there are
                    >muscles you have to move around the affected area. The scalp is a pretty
                    >good area for surgery, in a way, because you don’t really use those muscles
                    >for many day to day activities as you would other parts of the body. As
                    >far
                    >as actual brain swelling, they will most likely start steroids, maybe even
                    >before your surgery, to keep brain swelling down.
                    >
                    >
                    >
                    > >>>>"My usual advice... take things one day at a time... be good to
                    > >>>>yourself by taking breaks when you need them and not trying to push
                    >yourself too quickly... be patient with yourself." Is good advice I know,
                    >I
                    >am afraid it is hard for me to interpret it.<<<<
                    >
                    >I’m glad you asked for clarification on this. I didn’t have enough time to
                    >write in my previous email what I meant and can see it would be hard to
                    >interpret it.
                    >
                    >Here’s what I mean:
                    >
                    >“take things one day at a time”: This is not like healing from a C-section
                    >or appendectomy. Don’t bite off a big piece of your recovery and just
                    >focus
                    >on the long term goals. You will be recovering from this for a while, so
                    >try to make several short term goals for yourself so you can see your own
                    >progress. If you can’t make it from the livingroom to the bedroom without
                    >stopping for a break, shoot for making it ¼ of the way, then ½ of the way,
                    >then ¾ of the way, etc. If you can’t read a novel right away, try short
                    >magazine articles, then longer articles, then essays, then short stories,
                    >then longer short stories, then short novels, etc.
                    >
                    >
                    >” be good to yourself by taking breaks when you need them and not trying to
                    >push yourself too quickly”. When you get home, family and friends may come
                    >by to visit. You may feel like you have to make them feel comfortable by
                    >showing them how well you are and how “back to normal” you are. You may
                    >feel you need to say “would you like something to drink?” or when they
                    >start
                    >talking or asking questions, you may feel you need to do whatever you can
                    >to
                    >keep up with conversations and concentration on their statements... even
                    >when you feel like you could fall dead asleep because their visit has tired
                    >you so much.
                    >Don’t!!!!!! Your real friends will understand when you say “If you
                    >wouldn’t
                    >mind, I’m going to go take a nap. I’m starting to feel very tired.” You
                    >may find that you need to do this. This is what I mean by being good to
                    >yourself and not trying to push yourself too much. Maybe you can have a
                    >cue
                    >for your family like a sigh or something, a phrase, that they would know
                    >when you are getting tired and help you out with this.
                    >
                    > >>>> Wow, I didn't plan that whine session...sorry.
                    >What I meant to say is that I am worried since I don't bounce back like I
                    >used to, but still try to, what should I really do after surgery?<<<<
                    >
                    >This was not a whine session, you were expressing your fears and concerns
                    >and that is GOOD. As for bouncing back, you are halfway there because you
                    >WANT to. Now, all you have to do is your best.
                    >
                    >I hope some of this helped. Remember, these are just my experiences and I
                    >can’t speak for everyone. It’s a rough journey, but I feel strengthened,
                    >wiser and more appreciative of what I have for having taken that journey.
                    >
                    >I can’t wait to hear how your experience is.
                    >
                    > Keep those thoughts coming,
                    >
                    >
                    >Trisha
                    >Trisha Williams, R.N.
                    >BrainSurgery@Yahoo Group Founder/Moderator
                    >4.8 cm meningioma left frontal/parietal/temporal lobes resected 5/3/99
                    >Living, laughing and loving better than ever!
                    >
                    >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                    >Behalf Of Catherine J. Ilson
                    >Sent: Thursday, April 21, 2005 6:24 PM
                    >To: BrainSurgery@yahoogroups.com
                    >Subject: RE: Approaching surgery, thanks all
                    >
                    >Dear Trisha,
                    >
                    >Thanks so much for your support. (Your name seems familiar too, but I am
                    >afraid my visual memory seems to be in the dumper.)
                    >
                    >Amazing how much support you can get from "strangers" - it is so helpful to
                    >hear from people how are struggling with the same things, I am sure I would
                    >not be up to all this without everyone's help and insights and "rah, rahs".
                    >It does feel like a team in a way, all pulling for each other, all feel the
                    >ups and downs together. Makes the ride more meaningful, overall more
                    >positive.
                    >
                    >I think the things I want most is to be prepared, I don't do so well with
                    >surprises.
                    >I seem to panic first when faced with an unexpected uncomfortable situation
                    >or pain ,(I am sure it is wired in most of us to react that way to surprise
                    >- I am sure it was very helpful for us when we where protecting ourselves
                    >from lions, snakes and the like in the wild...) So, It is really been
                    >helpful to hear stories and the list of possible expectations.
                    >
                    >In my case, a very large tumor- not a solid mass I'm told but more like
                    >"toothpaste in a sponge", in my left temporal lobe, suggests a very long
                    >surgery.
                    >What can I expect to go through from beginning to end? (Laying in one
                    >position for 12 hours?) (I remember after my biopsy I had have the frame
                    >screwed in my head for hours because the surgeon was delayed with another
                    >surgery, when I was finally done I had the worst headache I ever remembered
                    >and pain meds were not given for a long time...) What's the possibility
                    >that
                    >I won't be able function after and in what ways and for how long?
                    >When there is a long "picking and sucking" session in the brain, is there a
                    >lot of swelling (obvious?) that would lead to ? Pain? From pressure from
                    >swelling or from the sutures or staples holding the skin and skull together
                    >back...
                    >
                    >What about function? (I know no one knows the answer to this, even the
                    >doctor in advance) Just wondering what are the similar situations people
                    >have gone through that I can compare with. Is it really possible to be
                    >talking fine after the surgery?
                    >
                    >Has anyone out there have this kind of tumor in the same area?
                    >
                    >I have heard from some people who have had wonderful successful surgeries,
                    >and are back to work in two weeks, or almost back to themselves in a month,
                    >then I hear about opposite stories...
                    >I think the awake surgeries seem to leave people much better than the
                    >asleep
                    >surgeries, Is that an incorrect assumption?
                    >
                    >One you say
                    >"My usual advice... take things one day at a time... be good to yourself by
                    >taking breaks when you need them and not trying to push yourself too
                    >quickly... be patient with yourself."
                    >Is good advice I know, I am afraid it is hard for me to interpret it.
                    >
                    >I tend to feel better when I push a little, keeps my mind off of the aches
                    >and pains and makes me feel good for trying.
                    >I have fibromalgia (I even feel embarrassed to say it), which I dismissed
                    >for a long time as some non-dx for stress.
                    >I used to play tennis, take martial arts classes, riding, and other
                    >activities that I always felt good after working out. Even if I got out of
                    >shape and got back to it (like after giving birth) I would be sore for a
                    >couple of weeks but then get stronger and could add to my workout.
                    >
                    >But after trying to take up some old activities (I tried martial arts,
                    >tennis ,then slowed it down with yoga (way too slow for me usually), and
                    >then even tai chi (really slow!) and still I was sore after every mild
                    >workout. I have been walking 2 miles every day almost since my dx just to
                    >keep moving but I haven't gotten stronger or faster, never able to increase
                    >the pace or impact. That has never happened to me.
                    >Of course, I am older now so I accept some of it as just an old body, but
                    >still...
                    >It all started after my chemo, steroids (now I have terrible osteoporosis),
                    >Thalidomide and Tamoxifen ...
                    >
                    >Wow, I didn't plan that whine session...sorry.
                    >What I meant to say is that I am worried since I don't bounce back like I
                    >used to, but still try to, what should I really do after surgery?
                    >
                    >Sigh.
                    >Thanks for asking:
                    >"Is there anything we can do to help prepare you for your surgery?
                    >Questions, concerns, etc?"
                    >Maybe you didn't expect such a rambling reply!
                    >
                    >I guess the questions will keep coming. I know there isn't a formula, I
                    >will
                    >be just fine and deal as I go along.
                    >I will have friends and family around and I will have a fantastic surgeon.
                    >Still, all your input helps me.
                    >
                    >At lease I think it is all very interesting - the brain is such an amazing
                    >thing.
                    >
                    >Take care to all,
                    >
                    >Catherine
                    >
                    >
                    >-----Original Message-----
                    >From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                    >Behalf Of Trisha Williams
                    >Sent: Thursday, April 21, 2005 2:24 PM
                    >To: BrainSurgery@yahoogroups.com
                    >Subject: Re: Approaching surgery, thanks all
                    >
                    >Way to go, Catherine! I believe I met you at the FBTA conference (which I
                    >agree was wonderful). Congratulations on being so proactive at preparing
                    >yourself for your surgery not only by reaching out for emotional support
                    >but
                    >by educating yourself as well. I love to see people empowering themselves
                    >to advocate for themselves. Good job.
                    >
                    >My usual advice... take things one day at a time... be good to yourself by
                    >taking breaks when you need them and not trying to push yourself too
                    >quickly... be patient with yourself.
                    >
                    >Most importantly, let us know how everything goes!!!!!!
                    >
                    >Is there anything we can do to help prepare you for your surgery?
                    >Questions, concerns, etc?
                    >-Trisha
                    >
                    >--- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
                    > wrote:
                    > > Dear All,
                    > >
                    > > I have read in awe for 3 years of all the brave people having
                    >brain surgery. I was very happy to hear how in most cases it seemed to help
                    >extend and/or improve people's life and I got great inspiration from the
                    >stories of courageous survivors going through such a scary procedure.
                    > > I also read to learn anything I could about surgery for the time
                    >when I may need the surgery (when the tumor growth was causing more
                    >dangerous problems than the language and memory problems that would result
                    >from the surgery.)>
                    > > In some way I was also jealous that my tumor was considered

                    === message truncated ===
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                  • Catherine J. Ilson
                    Dear Hope, Thank you for your support. It means a lot to me. I wish you the best with your meeting with Dr. Myseros. If you don t hear what you want, don t
                    Message 9 of 16 , Apr 23 11:43 AM
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                      Dear Hope,

                      Thank you for your support. It means a lot to me.

                      I wish you the best with your meeting with Dr. Myseros. If you don't hear
                      what you want, don't stop there.
                      (It took 3 years and 7 surgeons to meet the right one.)


                      You know there are several names I have learned on this search that you
                      should speak with before you give up the quest: (If you don't already know)

                      Name: Patrick J. Kelly MD
                      Title: Professor & Chairman, Dept Neurosurgery
                      Facility: New York University Medical Center
                      Location: Dept. Of Neurosurgery
                      New York, NY USA
                      Phone: 212-263-8002
                      Fax: (212)263-8031
                      Email: kelly@...
                      Website: mcns10.med.nyu.edu
                      http://www.med.nyu.edu/neurosurgery/appointments/

                      Dr Peter Black:
                      Department of Neurosurgery
                      Neurosurgeon-in-Chief
                      Brigham and Woman's Hospital
                      Children's Hospital
                      75 Francis Street
                      Boston, MA 02115
                      http://www.boston-neurosurg.org/faculty/black.html


                      Dr Mitchell Berger:
                      Professor and Chairman, Department of Neurological Surgery
                      Director, Brain Tumor Surgery Program
                      Director, Neurosurgical Research Centers, Brain Tumor Research Center
                      http://neurosurgery.medschool.ucsf.edu/faculty_staff/department_faculty/berg
                      er.html

                      Dr. Ronaldo DelMaestro in Montreal
                      http://www.mni.mcgill.ca/btrc/delmaestro/index.html

                      I wish you the best,

                      Catherine

                      -----Original Message-----
                      From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                      Behalf Of Hope Shasha
                      Sent: Friday, April 22, 2005 9:37 PM
                      To: BrainSurgery@yahoogroups.com
                      Subject: RE: Approaching surgery, thanks all!


                      Dear Catherine,

                      I don't have time to read many of the posts, but I have been really trying
                      to read yours b/c I can so relate to what you are going through. I have a 14
                      yr. old son, Justin who is in a very similar situation as you. He has an
                      inoperable tumor in the left posterior frontal lobe dx 9/04. We are flying
                      to DC next week to meet with Dr. Myseros at Childrens National who is very
                      optimistic about removing it.
                      I just wanted you to know that I am supporting you, thinking about you and
                      wish you a successful surgery.

                      All the best to you,
                      Hope Shasha

                      >From: "Catherine J. Ilson" <CILSON@...>
                      >Reply-To: BrainSurgery@yahoogroups.com
                      >To: <BrainSurgery@yahoogroups.com>
                      >Subject: RE: Approaching surgery, thanks all!
                      >Date: Fri, 22 Apr 2005 19:39:12 -0400
                      >
                      > Dear Trisha,
                      >
                      >Thank you so much for the feedback. Every bit of it is very helpful for
                      >me (and always so interesting!)
                      >
                      >It is odd, many of the stories are so similar to my first and second
                      >hospitalizations.
                      >
                      >I had a partial seizure during in the night (didn't know what it was at
                      >the
                      >time) and when I woke I was unable to speak correctly (all the words I
                      >was trying to say came out all mixed up) I eventually agreed to go to
                      >the ER and ended getting the MRI, dx and then in for the biopsy. They
                      >kept me in the hospital almost a week for all that. My language was
                      >still a problem but improving.
                      >
                      >I remember the biopsy was overall not that bad, but after my head hurt
                      >terribly and I didn't get any pain meds for over an hour- I almost
                      >passed out from the pain.
                      >I guess that is the kind of thing I get worried about. (And my sister-
                      >the
                      >RN- was running all over to get the nurses to get the meds, and they
                      >couldn't because the surgeon didn't leave the order...)
                      >
                      >Three weeks later I was feeling almost normal and I had a grand mal
                      >while driving to work...
                      >I pulled over when I felt it coming on and called someone and it took
                      >them over 2 hours to find me...all the while I was having seizures.
                      >I was in NICU for 3 days and finally started to rouse and was moved to
                      >a regular room. A few days later for me to start to understand part of
                      >conversations around me. It was odd, I felt fine, but my mind was not
                      >working.
                      >Very interesting.
                      >I couldn't talk easily, write, read, watch TV, and almost anything that
                      >took concentration was out for a long while. All the things I did with
                      >ease before now seemed forgotten, or oddly missing in part.
                      >
                      >Oddly, I could still sign (I was a sign language interpreter for 15
                      >years) but no one around me understood me, and didn't know how to
                      >sign...I often sign to myself when I can't come up with a word and then
                      >can remember the English word I am looking for. The other thing, I can
                      >often whisper the word I am looking for or having trouble pronouncing
                      >and gradually say it louder and I get it right.
                      >So interesting.
                      >
                      >I did some speech therapy and gradually improved and kept finding ways
                      >to adapt but never returned to where I was before. It was sad for me.
                      >
                      >Recently, after learning about neurofeedback training, I decided to try
                      >it and was amazed about how much of my old mental clarity,
                      >concentration and language (reading and writing) and especially my mood
                      returned.
                      >I am much more confident that if I have trouble after surgery the
                      >neurofeedback will help me.
                      >
                      >
                      >I am meeting with Dr. Black on Monday (the first time since talking
                      >with him at the conference) and am really looking forward to that.
                      >
                      >I have so many questions that are specific to my situation that I think
                      >he can address - much he did when we talked first- but because there
                      >has so much time since we talked, and have never spoken since I became
                      >his "patient" I know it will add the final calm to the whole thing.
                      >I found him very articulate and open and never made me feel
                      >uncomfortable asking questions. The right kind of surgeon for me. (Plus
                      >he was so fascinated by my symptoms, and the lack of them, and was very
                      >interesting mapping my brain- ya gotta love the guy!)
                      >
                      >I will have my laptop with my when I go to Boston so I will plan to
                      >check in on the Lists, Thanks everyone for all the help, information
                      >and support.
                      >
                      >Best wishes,
                      >Catherine
                      >
                      >
                      >-----Original Message-----
                    • lowreymary
                      ... Hello, Catherine Children are so resilient....mine are not perfect by any means but they are wonderful to me!!! I am sure yours are great too! Small things
                      Message 10 of 16 , Apr 23 4:02 PM
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                        --- In BrainSurgery@yahoogroups.com, "Catherine J. Ilson"
                        <CILSON@c...> wrote:
                        > Dear Mary,
                        >
                        Hello, Catherine
                        Children are so resilient....mine are not perfect by any means but
                        they are wonderful to me!!! I am sure yours are great too!
                        Small things like going to the hairdressers meant such a lot to my
                        children - they were so impressed by my 'mohican' hairstyle that,
                        when I took them for a routine haircut (as they say in the UK), they
                        asked for a 'mohican like Mam'!!!!

                        Seriously though.....I was in hospital for 2 weeks and discharged on
                        my (40th) birthday. I had planned a large celebration with family and
                        friends for a long time but, as events overtook me, enjoyed - to all
                        intents and purposes - a quiet celebration with my children who could
                        not understand why I could not blow out the candles on a very small
                        cake. I could not see the candles or the cake at the time and could
                        not tell them this. I was frightened that they would not love me any
                        more because I could not see them properly. I was also scared that my
                        speech would be lost and I have still no hearing in my right ear but
                        they do not know this!!!! I was even more scared that I
                        would 'dribble' and have a 'lopsided face' and be a different person
                        after surgery. I cannot thank my surgeon - and God - enough for the
                        nearly complete recovery I have enjoyed in the last year.
                        My biggest fear was the loss of my identity as 'Mary' and as 'Mam' to
                        my children. I had decided that, if I did not recover, I did not want
                        my children to see me. This was very difficult but I decided that
                        this would be easier for them to remember me as 'Mam' rather than a
                        stranger who coud not speak or see or hear. I did this for them -not
                        for me but that does not make me as hero! My own dad died when I was
                        11yrs old and I remember what it was like. I did not want that for my
                        children.
                        I read all the posts on the Yahoo sites and do not often respond but
                        your message coincided with some of my own experiences.
                        The sadness is overwhelming - but only in that I would not see my
                        children reach adulthood, marry, become a grandmother etc. Then I
                        realised that this sadness was purely selfish and I was upset at the
                        things I would miss - not from the perspective of my chldren. I loved
                        my Dad massively - and survived his death - and I have lived my life
                        for him - remembering him every day. I realise that I idealise him in
                        my memory, and still want to make him proud - but I recovered FOR my
                        children and drew my strength from THEM.
                        The pain was negligible after surgery, but the scars more prominent.
                        They have faded a little now though. I cannot ride a bike any more
                        because of the loss of balance - and miss the bike rides with my
                        children but I have learnt to walk briskly (and breathlessly!!!)
                        along side them. I have not had any seizures since surgery.
                        On a practical level, I have had great difficulty obtaining travel
                        insurance since the operation and have had to pay a large premium for
                        insurance to travel. I have had my driving licence re-issued. My
                        sense of balance - or lack of it - causes much amusement in the
                        family now and I cannot see stairs and steps properly so my sons
                        enjoy 'escorting' me at times.
                        The base of my tumour is still there - right next to my brain stem -
                        but I can honestly say that I have enjoyed EVERY SINGLE SECOND of my
                        life since the surgery, which is a great gift.
                        I pray that you enjoy the same recovery as I have had -I know my
                        tumour will recur but I hope that it will take a very, very, very
                        long time to become a problem. Surgery is the means to an end but
                        not 'the end' and my thoughts are with you.
                        Love
                        Mary
                        >
                        Thank you for your warm support.
                        >
                        > I remember when I woke up unable to speak and had to get an MRI to
                        learn I
                        > had a huge brain tumor, and it was inoperable...
                        > The first thoughts were of not being able to see my children grow
                        up.
                        >
                        > I remember feeling all the things you were saying you felt. The
                        shock and
                        > terrible sadness.
                        > Because I had the gift of time (slow growing tumor) I started to
                        mobilize.
                        > I started making plans to leave my children the best I could.
                        > I organized my financial details (wills, living wills, etc) and
                        started
                        > talking with them gradually covering all the things I wanted to
                        make sure I
                        > told them before it was too late to say.
                        >
                        > When I had a grand mal seizure after three weeks after my dx it
                        really
                        > freaked out my kids.
                        > (I only learned much later that two of my children in the car when
                        their
                        > father found me so they saw me having seizures while they drove me
                        to the
                        > ER.)
                        >
                        > It is tricky because I didn't want them to imagine terrible things
                        and be
                        > anxious, so I kept a very positive attitude and told them I was
                        lucky that I
                        > have a slow growing tumor and in a few years there will be new and
                        better
                        > treatments...etc.
                        > They grabbed onto that and I am glad for it.
                        > It is awful seeing your children afraid and not able to make them
                        feel safe.
                        > I eventually wrote letters to them, on different occasions, that
                        told them
                        > what I think of them as individuals and how proud of watching them
                        growing
                        > up...
                        >
                        > I have tried to be honest with them, but not to tell them more than
                        they
                        > wanted to know. And always told them they can ask me anything if it
                        occurs
                        > to them. I casually brought up as many explanations I thought would
                        be
                        > helpful.
                        > Overall I think I try not to make it a big part of our lives but
                        don't deny
                        > it exists. I joke a lot too as does my family so I think that is
                        how we
                        > dealt with a lot of weirdness for a long time.
                        > Over three years all of us get a bit numb about it all.
                        >
                        > I have also offered therapist for all of us as a family, and
                        individually,
                        > so they could have a place talk about anything that they may not
                        want to say
                        > to me.
                        > They all used it in different ways but I believe it helped and they
                        know
                        > that they can always go back to the therapist now that they have a
                        > relationship with him it is easier.
                        >
                        > I think with the upcoming surgery the kids are very casual about
                        it, and I
                        > guess that is how I am acting about it.
                        > We are talking about how I will shave my head like a Mohawk instead
                        about
                        > the dangers of surgery.
                        >
                        >
                        > It sounds like you did just what you thought best for you and your
                        children,
                        > that must have been very difficult.
                        > You should feel very proud of yourself - you were a brave soldier*
                        when you
                        > needed to be.
                        > Your kids sound wonderful.
                        >
                        > Take good care, and thanks for your heartfelt support.
                        >
                        > Catherine
                        >
                        >
                        > (*I always used this term for my kids when they are toughing out
                        something
                        > hard)
                        >
                        >
                        > -----Original Message-----
                        > From: BrainSurgery@yahoogroups.com
                        [mailto:BrainSurgery@yahoogroups.com] On
                        > Behalf Of Mary Lowrey
                        > Sent: Thursday, April 21, 2005 7:14 PM
                        > To: BrainSurgery@yahoogroups.com
                        > Subject: RE: Approaching surgery, thanks all
                        >
                        >
                        > Catherine....I don't often post from UK but.....you are so brave.
                        > I don't know how you have managed for so long with the awareness of
                        the
                        > tumour you have.
                        >
                        > I had an MRI for vision problems on 02.03.04 then surgery for a
                        petrous
                        > angle meningioma on 02.04.04 - tumour size 5cm x 4.5 cm adjacent to
                        brain
                        > stem.
                        >
                        > I write to you because you have 3 children - just like me - and of
                        simiilar
                        > ages.
                        > My children are my world and I struggled to analyse how much
                        information
                        > they could cope with.
                        > My 2 sons were 14 and 11, my daughter was 13.
                        > I told them nothing on the scan day, and then spent some time
                        explaining
                        > that I had a vision problem which led to me having a scan.
                        > This was the truth and they knew I was having a scan. I told them
                        the whole
                        > truth in small segments, eventually saying the word 'tumour' and
                        explaining
                        > that this meant an abnormal growth.
                        > Here, in the UK, people automatically believe that a tumour is
                        cancer. My
                        > children did not ask me anything which I could not answer because I
                        > researched everything in advance - even checking definitions in
                        dictionaries
                        > to make sure I could answer their questions!
                        >
                        > Surgery was scary - big time - and I felt like saying 'goodbye' to
                        my
                        > children but found it very difficult.
                        > I did not want to upset them, yet was so scared that I would not
                        see them
                        > again.
                        > I wrote short notes to thank all my close friends and relatives for
                        their
                        > support, kept the tone light, and posted them on the evening before
                        the op,
                        > but I could not face doing the same for my children.
                        > I bought birthday cards for each birthday for my children for the
                        following
                        > year, wrote what I wanted in them, sealed them and put them away.
                        > So.......I wrote everything that I felt, thought and experienced in
                        a sort
                        > of diary while I was in hospital and, immediately before my op, put
                        the
                        > diary away. I survived.....my children have never read my diary -
                        no-one has
                        > - not even me - and the cards remain sealed.
                        > They were not upset unduly and my daughter did so well at school
                        that year
                        > that she won a prestigious award!!!!!
                        >
                        > They will never know what I went through but they are so well-
                        adjusted that
                        > one of my sons said, just recently, 'mam, did you have a brain
                        tumour?' I
                        > said 'yes, I did, but the doctor removed it.
                        > There is a little bit left and that's why I go to the hospital for
                        > check-ups'. He said....'why didn't you tell me?' and, when I
                        explained that
                        > I did, and he remembered everything I had said, he said ' I didn't
                        realise
                        > how brave you were'.....I cried.
                        >
                        > I'm telling you this....not because I think I handled it well, but
                        because I
                        > told my children the truth, bit by bit, and they - a year later -
                        make me so
                        > proud.
                        > There is no perfect way to talk to them and everyone knows their
                        own family
                        > best - but 'stay strong', the surgery is far easier to cope with
                        than the
                        > uncertainty and your love for your children will give you the
                        strength to
                        > conquer this.
                        >
                        > My prayers and thoughts are with you....it is a year since my
                        surgery, and 2
                        > scans prove that the base of my tumour is still there but stable. I
                        still
                        > worry - we all do - but I have been fortunate enough to return to
                        work and,
                        > most importantly, I have been allowed to stay the same 'mam' my
                        children
                        > have always known. For that, I cannot be more grateful. I pray
                        that your
                        > surgery is totally successful, that the worry is removed totally,
                        your
                        > tumour completely excised, and you enjoy a complete recovery.
                        > Mary
                        >
                        >
                        >
                        > >From: "Catherine J. Ilson" <CILSON@c...>
                        > >Subject: Approaching surgery, thanks all
                        > >Date: Thu, 21 Apr 2005
                        > >
                        > >Dear All,
                        > >
                        > >I have read in awe for 3 years of all the brave people having
                        brain
                        > >surgery.
                        > >I was very happy to hear how in most cases it seemed to help
                        extend
                        > >and/or improve people's life and I got great inspiration from the
                        > >stories of courageous survivors going through such a scary
                        procedure.
                        > >
                        > >I also read to learn anything I could about surgery for the time
                        when I
                        > >may need the surgery (when the tumor growth was causing more
                        dangerous
                        > >problems than the language and memory problems that would result
                        from
                        > >the surgery.)
                        > >
                        > >In some way I was also jealous that my tumor was considered
                        inoperable
                        > >-(what an odd thought, to be jealous not be able to have brain
                        surgery)
                        > >I know most of you, especially the all "inoperable" people,
                        understand
                        > >what I mean.
                        > >I also hoped that some day there would be a way to have surgery
                        without
                        > >the serious dangerous "side effects" I was warned about.>>It seems
                        that
                        > time is here.
                        > >
                        > >After all the searching, and reading on these lists (which is
                        where I
                        > >learned about the FBTA conference- thank you all) I found surgeons
                        who
                        > >are confident they can remove my tumor. I also met other survivors
                        who
                        > >have had great success with these procedures (awake surgery, intra
                        > >MRI's, brain>mapping...) adding to my confidence.
                        > >
                        > >I will be having several tests done next week (fMRI, WADA, MRI
                        Spec)
                        > >and am told that if it all looks as they expect, they would
                        suggest
                        > >doing the surgery as soon as May 2nd (but I could always delay...)
                        > >
                        > >I have gotten some wonderful supportive and informative emails all
                        > >about the tests, the surgery and the recovery. The information is
                        > >invaluable to me because of the information starved kind of person
                        I
                        > >am. The more I know, the more at ease I am. The more I can be
                        prepared
                        > >- for good or bad- the better I handle things.
                        > >
                        > >So I wanted to thank all of you who wrote to me, I know it takes
                        time
                        > >and energy to write- something we all struggle with- so I want to
                        > >thank you for the effort and support. It means so much to me.
                        > >Thanks to all,
                        > >
                        > >(I will also add, that the lines are still open, or "keep the
                        letters
                        > >and calls coming!" There is no limit to the amount of information
                        I am
                        > >interested in getting!)
                        >
                        > >Wishing you all the best,
                        > >Catherine (45)
                        > >
                        > >(Oligo List facilitator)
                        > >
                        > >4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q
                        deletion
                        > >(6x4.5) L temporal lobe, "inoperable".
                        > >5/2002: PCV for 6 months;
                        > >1/2003: Antineoplastons for 12 months;
                        > >1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
                        > >Thalidomide,and supplement: Squalamax.
                        > >MRI's continue stable.
                        > >1/2005: Stopping all treatment- "wait and watch" (per Duke)
                        except:
                        > >Keppra (for seizures) and Namenda (for memory).
                        > >1/2005: Began Neurofeedback training for sleep problems,clearer
                        > >thinking,and depression. (It has helped!)
                        > >3/2005:Pursuing surgery (!) with Dr. Peter Black. Scheduled
                        testing:
                        > >fMRI, WADA 4/26/05...
                        > >m/o Alex (16), Kira (15), Jake (11)
                        >
                        > >
                      • Catherine J. Ilson
                        Dear Steve, I am so sorry that you have gone through such a hard time. I understand the overwhelming sadness, loneliness and emptiness can come when you think
                        Message 11 of 16 , Apr 23 7:06 PM
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                          Dear Steve,

                          I am so sorry that you have gone through such a hard time.
                          I understand the overwhelming sadness, loneliness and emptiness can come
                          when you think of all you have lost.
                          I hope you can gain some improvements, ever so small they may be, each day.

                          I hope knowing that there are others struggling with similar losses may give
                          you some sense of encouragement, the way you may feel if you were on a team,
                          struggling together to "win" even the climb is tough, you will go through it
                          together.

                          Sometimes that is all you can have, to feel good enough about yourself
                          knowing that you are trying your best with what you have and knowing that
                          you are not alone with it.

                          The sad truth is, life doesn't come with guarantees so we have to be
                          resourceful and use what we have to make it the best it can be.

                          I will be rooting for you.
                          Take good care,
                          I wish you the best,

                          Catherine (45)

                          4/2002: partial seizure/MRI/biopsy:Oligodendroglioma II,1p 19q deletion
                          (6x4.5) L temporal lobe, "inoperable".
                          5/2002: PCV for 6 months;
                          1/2003: Antineoplastons for 12 months;
                          1/2004: Antiangiogenesis drugs for 12 mos: Celebrex, Tamoxifen,
                          Thalidomide,and suppliment: Squalamax.
                          MRI's continue stable.
                          1/2005: Stopping all treatment- "wait and watch" (per Duke) except: Keppra
                          (for seizures) and Namenda (for memory).
                          1/2005: Began Neurofeedback training for sleep problems,clearer thinking,and
                          depression. (It has helped!) 3/2005:Pursuing surgery (!) with Dr. Peter
                          Black. Scheduled testing: fMRI, WADA 4/26/05...
                          w/o Roger (45) m/o Alex (16), Kira (15), Jake (11)


                          -----Original Message-----
                          From: BrainSurgery@yahoogroups.com [mailto:BrainSurgery@yahoogroups.com] On
                          Behalf Of Steve Lightfoot
                          Sent: Saturday, April 23, 2005 9:58 AM
                          To: BrainSurgery@yahoogroups.com
                          Subject: RE: Approaching surgery, thanks all!


                          I understand and know what it is like to go through it all. I am a 53yr old
                          man that never shows any out side emotions. Well I will be honest every time
                          I would talk to anyone on the phone tears would flow. I knew even th-ow the
                          doctors said I had a 95% chance of coming through this there is just no for
                          sure level of any out come. I still have problems on my left side and they
                          put a shunt to drain off any extra pressure. Gods knows how scared I was. I
                          didn't have any family or great friend to support me at all. It was 30 days
                          in ICU and 30 day pre surg. and then another 30 days to stabilize. To me it
                          was a personal living hell.It took me many months to remember things as
                          recall and I lost my hearing on my left side. No one can tell me if I will
                          ever get this back . I would guess its different for everyone. Once is all I
                          needed. Trust me I know the tensions that maybe building I hope your doctors
                          have all given you good odds.
                          Its better to still be here with everyone than a though in someones
                          hart.Still working on the healing even th-ow its very hard some days it
                          still brings tears but I must fight back everyday I just wanted to pour out
                          my feelings to the folks who understand.

                          Good luck to all you will make it
                          Steve Lightfoot
                          proformsports@...

                          Hope Shasha <jjjth@...> wrote:

                          Dear Catherine,

                          I don't have time to read many of the posts, but I have been really trying
                          to read yours b/c I can so relate to what you are going through. I have a 14
                          yr. old son, Justin who is in a very similar situation as you. He has an
                          inoperable tumor in the left posterior frontal lobe dx 9/04. We are flying
                          to DC next week to meet with Dr. Myseros at Childrens National who is very
                          optimistic about removing it.
                          I just wanted you to know that I am supporting you, thinking about you and
                          wish you a successful surgery.

                          All the best to you,
                          Hope Shasha
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