Mary,
Good luck on your whole brain radiation and I'm so happy
the pathology
report was good on the growth.
I have been reading your story and I believe you have the
frame of mind to
deal with the radiation really well.
Prayers will be going up for you and all the others.
Melanie Harwell
----- Original Message -----
From: "M. F. Meister" <gammfm sssnet.com>
To: "bc - IBC List" <ibcibcsupport.org>
Sent: Saturday, January 13, 2007 2:31 PM
Subject: [ibc] Mary's Latest
Hello,
I promised that I would try to get back to you soon on a
little bit more of
an update on me and what has transpired lately health wise
& etc. I wanted
to get back to you - finally - and thank you again as well
so much for your
kind words, your thoughts & prayers regarding all that I
have been going
through...
I have been and continue to be tired out. I am trying to do
the best that I
can and rest when I can. That isn't always possible though.
There have
been quite a few medical appointments keeping me busy and on
the go too.
Then when I get back home from them I am just worn out... I
am still
regardless the mommy to a 5 1/2 year old, so Nicholas keeps
me a hopping.
Thank goodness my mom has been staying with us to help run
the house and
help me with Nicholas. I would be lost without my mom
(Martha) and her help
What I have been going through has not been easy for her
as I am all that
she has, plus when you get older it is not easy to do still
what you did
when you were younger.
Well, I just got some news back the later part of the week
on the results of
the out-patient surgery that I had at Aultman a week ago
Friday (1/5) to
have the growth removed from the back of my right knee. As
I had mentioned,
the surgeon did not like the situation prior to surgery with
the growth &
did not like the way it looked at all when he removed it, so
he told us that
he thought it was cancerous. He has been a surgeon for a
long time & is
very experienced and knowledgeable when it comes to things
like that. That
would seem logical too for it to be cancerous considering my
having had
breast cancer for the last 4 plus years... It must have
been a miracle
that stemmed from all the prayers that people were saying
for me when I was
in surgery (I am not getting on a religion soap box - I am
just very
thankful) because it turned out not to be cancerous at all.
The pathology
report came back saying that it was a lipoma, which is a big
word for a
fatty tumor. So I am very relieved obviously.
My mom says the incision looks really good and it wasn't
really hurting me
at all after surgery surprisingly. Well, I took the
steri-strips off though
the other day that were covering the incision because they
had been on there
quite a few days and I figured the stitches would be safe
uncovered by this
time, the steri-strips were getting to be kinda yucky &
they were getting
ready to fall off almost anyway they seemed. Well bad idea
- because once I
took them off the whole thing has started to hurt & I
think I maybe even
accidently tugged at a stitch and tightened it some pulling
off the
steri-strips. The steri-strips were at least giving the
incision area &
stitches extra protection and support know that I think
about it. I will
have to put something back on it to cover the incision I
guess. I am not in
terrible agony, but it does hurt some when I walk or when I
touch it. I
should have left the steri-strips on there I guess and just
left well enough
alone, even if they were getting yucky. I thought I was
doing ok and it
wouldn't harm anything, but it is a bad idea to try to play
nurse on your
own. So you learn the hard way... I see the surgeon this
coming Thursday
afternoon (1/18) to have it checked and hopefully all will
be well with it
if I continue to leave it alone. My mom also sees the same
surgeon that
afternoon as well to have fluid drew off of her knee that
she had a total
knee joint replacement surgery done on over a year ago that
she continues to
have trouble with. So we both need prayers for our visit
with the surgeon
that day.
I also made a decision that I hope and think is the best
decision that I can
make considering the circumstances regarding the whole brain
radiation
therapy that I need to have on the metastasis that has
occurred in my brain
and results in numerous brain tumors of varying sizes. I
have decided to go
for sure to Mercy Medical Center and have my radiation done
there. I had
thought considerably on this, tried to do research on-line
and also asked my
oncologist and the radiation oncologist at Mercy a lot of
questions. I have
been very scared about the idea of needing to have whole
brain radiation
treatments because of the fact that it is radiation
treatments of course to
my brain. Maybe I was being paranoid, but the thought
really scared me and
I was trying to determine at which area hospital I might be
able to have it
done in the safest manner possibly since they each take a
slightly different
treatment approach. I want to try to protect my brain also
as much as
possible. The radiation oncologist at Mercy even said that
some of things
on the Internet regarding whole brain radiation are pretty
scary sounding.
My oncologist had sent me to Mercy to have a consult with
their radiation
oncologist since they do the whole brain radiation
treatments there in 15
sessions (3 weeks) instead of the way it is done at the
other local hospital
Aultman where I have always received radiation in the past,
in 20 sessions
(4 weeks) (or even up to 28 sessions - 5 1/2 weeks depending
on the
treatment needed). The radiation oncologist at Mercy said
that the only
difference for me would probably be 15 session vs. 20
sessions. That is not
that big of a difference so the 15 session approach would
not have the
strength of each individual treatment be that much stronger
to be at the
point that I would need to worry about it being too strong
and causing
damage. They couldn't do it that way if it wasn't safe
either and I guess
the national trend is to do it is a shorter time span. It
made me feel
better too that the technician also told me that the brain
is very resilent
to radiation since it made up of so many nerves & the
nerves handle well the
radiation treatments and aren't damaged really by the
radiation. She said
it is the the things that grow & reproduce like the
cells that grow - like
the tumors in the brain, the skin of the scalp and the hair
that receives
the damage. I also was very impressed with Dr. Walsh, the
radiation
oncologist at Mercy, with how patient he was with me in
helping through my
questions & concerns, checking further into things for
me and even calling
me at home at 8:45 pm at night to get back with me to give
me the answers he
had found. Not many doctors would take the time to do
that.
If I didn't already have metastasis in other parts of my
body (mets to bone,
liver & maybe lung) then I would just say do the whole
brain radiation in
the longer method just to be on the safe side, but... I
need to go off of
my chemo (Navelbine) during the whole time that I am
receiving my whole
brain radiation treatments and it necessary for me to try to
get through my
radiation treatments as soon as possible so I can go back on
chemo. Being
off the chemo should hopefully help some with the skin
sensitivity issues
and hopefully my skin won't get so irratated and burned by
the radiation
treatments. I always have a tendancy to burn with my
previous radiation
treatments. Your scalp is very sensitive anyway and I hope
to prevent any
serious burning. Anyway, the longer that I am off of chemo,
the longer
those mets have a chance to grow and go "wild"
though. They are stable at
this time with being on chemo, but they will grow if I am
off of treatment
too long. So I had to have that be part of my decision
making process as
well. You have to try to think about each factor and try to
put it all
together somehow.
So thinking over things and come to a decision in logical
manner really
helped me to feel that I was doing the right thing instead
of rushing into a
half-hearted decision that I felt rushed into and pushed
into. I can have
peace of mind with my decision knowing that I did what I had
to do. I went
to Mercy yesterday (Friday, 1/12) for my simulation for the
whole brain
radiation. I was fitted with the plastic mesh like mask
that I have to wear
during each of my treatments and the measurements were taken
that will go
into the computer that they will use to align me exactly the
same each time
that I come in. It was a pretty easy process. The mask
didn't seem to be
too uncomfortable or confining. The radiation treatments
don't take very
long so I won't have the nask on very long each time. It
was nice also not
having to get this time the tattoo markers that they use for
radiation &
have them put on my head or face. The little things kinda
hurt when they
mark you with the needle & ink and so it is nice that
they just mark the
mask, plus I don't have to have the marks to show later on
my face.
So I will be starting my whole brain radiation treatments on
Monday (1/15)
at Mercy Medical Center. Like I mentioned I will be going
for 15 sessions
and it will take me 3 weeks. Hopefully the time will go by
quickly. And I
especially hope the side affects will be minimal. The side
affect that I am
looking forward to the absolute least is losing my hair. I
also don't look
forward either to the skin irratation & possible
head/scalp burns, and
possible fatigue that may be extreme.
They said that my hair will probably start to come out
during or towards the
end of my 2nd week of my treatments. I lost my hair with
the first chemo I
was on, so I have been bald before but I hate it. It has
been really nice
having hair for the last 3 1/2 or so years. Plus I hate
having to get the
looks & stares from people. I also hate having to make
the explanations to
some people that I know on what I am going through to have
lost my hair
because I really didn't want to tell everyone I knew that I
had brain mets
because it sounds so bad. Maybe I will just tell them that
my dr. changed
my chemo to try some new treatment. It really isn't
anyone's business, but
they do expect answers it seems. It takes so long for your
hair to grow
back in completely it seems (quite a few months at least for
peach fuzz) so
it last so much longer that your radiation treatments. But
my health and
fighting against the brain tumors is the most important
thing, so I have to
do what I have to do. But hair is such a woman thing though
and not a fun
thing to have to go through losing (some men have a hard
time with losing
their hair too, but it more socially acceptable for them to
be bald it
seems). I don't have anything or any finances for a wig or
head coverings,
as I thought that when I lost my hair before quite a number
of years ago and
it grew back that I wouldn't have to go through that ever
again, so I will
have to see what I can work out as soon as possible so I am
not in a big
bind in a couple weeks when I start to loose my hair.
As a side note, my back also continues to hurt quite a bit
in the right mid
section. I am pretty convinced now from the way it is
continuing to act
that I did something ever so slightly that caused a rib to
break or fracture
some because of them being weeker because of the cancer in
them. It is not
as bad, but similiar to how my back felt when the same thing
happened this
summer when I injured my back taking a pair of Nicholas'
jeans out of the
dryer. I still have no idea at all what I did to injure it
this time
though. The pain was so severe this summer & I had no
clue as to what
happened as I had never been through this before that I had
to go to the
emergency room. I am a little bit more experienced this
time around in
dealing with it. The actual break did not even show up on
the x-ray this
summer, but my oncologist is convinced that is what
happenend & she said
that sometimes it takes you being at just the perfect angle
for the break or
fracture to even show up on the x-ray, so many times the
x-ray does not find
the break. The only thing she said I could do then is take
it easy, take
pain meds and just wait for the rib to heal on it's own -
which can take
weeks and months. She said that I could get radiation if
need be, but they
would have to get the break to show up on an x-ray to know
where to even
radiate and it might just be better to deal with it and have
it heal on it's
own instead of having to endure radiation on it. It took a
lot of time, but
eventually the break healed and my back went to normal.
That is the advice
that I am going to take this time too and just wait it out.
I am just going
to do the best that I can to get through the pain and wait
for it to heal.
At least it is not quite as severe of an injury this time
around. But it
still does hurt quite a bit... It doesn't hurt that much
when I am sitting
down or laying down, but it hurts when I try to stand up.
So I will just
have to sit or lay around I guess. LOL!
Well, I am starting to ramble so I will go for now. Please
continue to
think of me if you would please and keep me in your thoughts
and prayers. I
will need them for strength and courage to get through the
days, weeks and
months ahead...
Fondly,
Mary M. - Ohio
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