Smb1970@aol.com wrote:
>
> Okay you talked me into it.. Not to be labeled a turncoat or anything, but I
> think I'll stick around for a while, you guys/gals (always gotta be
> politically correct, right? lol) are wonderful... thanks for the words of
> encouragement and cheer, you really gave me a boost. What's even better, the
> "boosts" on here are allowed "as needed" and given with understanding.
>
> Thanks again for all the information, Ross. By the way, what is the "Album"
> and how does it work? I think I'm missing out on something here. I'm hoping
> it's a list of the people on here and what they are dealing with. That would
[Ross Ylitalo]
The Album is a simple album I have put on my new website. It can be viewed
at:
http://www.rossroads.com/images/ross/MOL/Photo_html/MOL_PhotoAlbum.htm
It would be really super if you could submit a photo of Katie and yourself! I
have really enjoyed being able to see who everyone is.
> be really helpful to me as a "newcomer" to add them to my own prayer list.
> The only scanned photo I have of Katie right now is one of her when she was
> just 2 years old with her brother, but I'll try to get a more recent one
> scanned soon. I hope all is going well with you - can I ask when you were
> diagnosed and how it's gone for you? I have learned there are several types
[Ross Ylitalo]
I was diagnosed last fall, Novemember of 97', when I had a siezure at home.
You're right of course, not all brain tumors are the same. As brain tumors go,
I had a "friendly" one. Mine was an "Oligodendroglioma" which was located
in the front right quarter of my brain. Surgery was able to remove all of the
visible tumor, and with Oligodendrogliomas, my understanding is that removal
is normally good enough, but tests on my tumor showed it to have a pretty
high growth rate index (14%), so they treated it aggressively with a followup
of chemo and radiation.
> of brain tumors, none the same, and of course everyone who hasn't dealt with
> this thinks all tumors and cancers are the same. They think when we say she
> had a clean resection that she has been cured. Most of the time I can be
> hopeful, but sometimes I want to slap them in the face and say "It's NOT OKAY!
> I may be losing my little girl!" It's so nice to talk to people who know how
[Ross Ylitalo]
That is one of the things I like about MOL, here we really do have peers
who understand exactly what you mean when you get frustrated! Also,
here we can lean on each other and find a little strength.
> difficult it can be without hiding behind platitudes. Maybe that's the
> difference, for everyone here this is reality and you can't hide from it no
> matter how hard you want to try sometimes.
>
> Does it make a difference for the Shriners organization for the second opinion
> whether or not she has started radiation therapy?... She's actually scheduled
> to start it tomorrow. Does anyone know what side effects we may be looking at
> from radiation to the back of the head?
>
[Ross Ylitalo]
The thought of radiation was at first intimidating, and I wondered if I would be
able to feel anything. It turned out that I can easily compare it to getting an
X-Ray--I never felt a thing. The Lab Technicians were so friendly that I even
enjoyed getting called for my turn.
I had radiation to the back of my head, and from the front, left and right sides.
The side effects I have noticed include loss of hair, which is not an alarming
thing--the hair follicles are weak and temporarily made brittle by the radiation.
No big deal in the scope of things.
Another side effect I have noticed is increased tiredness. I personally didn't
notice the tiredness until my seventh week of radiation (I only had seven weeks,
once each weekday.) I am still tired now, four weeks after my last radiation.
I've heard that one can expect the tiredness for four to eight weeks after radiation.
Also, my skin has dried out a little on my scalp. Its slightly itchy, but its not
so bad that I want to use creams--I'd rather be a little itchy than oily, just a
personal thing, I'm sure.
To be sure, there is a real possibility of any number of other side effects when
getting radiation to the brain--at least that's the way it was described to me.
The brain is responsible for so many things. To be perfectly honest, the
Doctors told me that there was a slim chance of unpredictable side effects.
The radiation technology is getting so good now, however, that they are
very good at concentrating the radiation in only the areas that they really
want to "burn." They went on to say, that although these unpredictible side
effects are a reality, the chances of them happening are quite slim.
You can take comfort in knowing that today we have such good technology
that your Katie is being taken care of very, very well.
> With prayers and hope...
Ross
> Sherry
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