[MOL] Introduction 0 albeit a bit longer than I intended [00025] Medicine On Line


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[MOL] Introduction 0 albeit a bit longer than I intended



Hi everyone!

I have been monitoring your list now for over a week (will I ever get
through it all:) !) and decided it was time for a more or less formal
introduction.

I am 51 and live near Baltimore, MD.  

About two months ago, I was having some trouble breathing - didn't seem
serious as we were having many code red days and I do smoke - even people
who don't smoke often have trouble on code red days.  I had been really
tired for a few months, but attributed that to some pretty big changes in
my life in general.  Stress, etc.  Had been having a cough, but between the
smoking an a good case of bronchitis once or twice a year, didn't give that
much though either.

Finally went to the doctor and the bottom line after x-rays and CT scans of
all shapes and types is that I have stage IV non small cell inoperable lung
cancer.  

First they found a pleural effusion in my left lung between the pleura and
my lung itself - before all was said and done over a gallon of fluid was
taken out of there and I had an operation to try to seal off the area so no
more liquid could seep in - while the oncological surgeon explained that
this operation had a success rate of 80-85%, naturally there are thoughts
of the other 15% - won't know for certain which group I am in till next
week - 4 weeks after the surgery when they will be able to get a clear
picture of what has happened since.  Surgeon also saw through scope some
small nodules forming in my lung.

The biggest thing to deal with here is that two different cancer cells were
found in the fluid, but so far the specialists have been unable to find a
primary site for the cancer, hence the stage IV.  They know the plerua is
malignant, but with the liquid (fully metastisized) moving throughout my
body, where else it may be attaching is a mystery.  I was told that
sometimes a primary site is never found.

So I am now on chemo every week for as long as I can take it with an
unknown end.  I take Taxol and Navelbine which is a slightly unusual
combination, but my oncologist sent the fluid to a lab that tested it with
all possible chemo combinations for liklihood of effectiveness and this is
what they come up with.  If it doesn't work as expected, then we will try
something else.  By the way inbetween drugs, they inject a serious of drugs
that are designed to keep me from being sick and so far I have been
fortunate - a little mild queasiness sometimes and generally quite tired,
but other than that - nothing.  

Even still have my hair, although I understand it can go quite suddenly -
the chemo has played hell with my perm and my color though - oh well!  :)
My personal beautician has worked with many cancer patients so he is ready
for me when it happens.

Apparently the prognosis for this is not good - my doctor who is the head
of oncology at a good cancer center here (not Johns Hopkins) is very honest
without being brutal - he explains everything to me and always makes time
answer all of my questions, even though some of them seem silly to me.  I
could have from 6 months to several years.  From what he has seen on the
reports, he wants to buy me at least a year and maybe longer as he knows
what is "in the works" so to speak and believes the new stuff may help me
greatly.

The only thing he didn't consider in his prognosis is me.  At first I
accepted it without question - then I looked around at all the beautiful
people I love so much and decided there was no way in heaven or hell that I
am ready to leave right now, so the other side is just going to have to
wait a bit.  I pray and sometimes visualize (I personally like a rocket
headed for a black hole - nothing ever comes back from a black hole if what
the scientists tell us is correct.)

This was such a shock as I am certain many of you know.  One day I am
reasonably healthy with nothing that seemed super abnormal and almost the
next I am a terminal cancer patient.  (in my book terminal can mean 10
years, by the way, or longer).

I am reading Choices with was recommended on Usenet and a friend
recommended Love, Medicine, and Miracles.  Still can't read too much of
them at one time - it gets overwhelming.  

Still I am determined to make the hangman wait for my schedule and not his.
 (Nothing like being a control freak, is there! hehehehe)

Right now I am not working - get tired very easily and I also have the
shoulder pain which some days is unbearable.  I treat it with some
exercise, heat, and a pillow under the arm which does seem to help.

This may sound strange to you, but my personal doctor recommended about 6
names to me when I was first diagnosed and told me that one particular
doctor was the person she would see if she got cancer - she said he was
caring, thorough, and didn't try to sugarcoat what what happening.  So I
chose him and he appears to be all she said he is, so I have not sought a
second opinion at this time.  Naturally that is not to be precluded in the
future.  Sometimes I feel I am crazy, but I really do think he is doing the
best for me at this time.

Really didn't intend to ramble on so, so I do thank you for "listening."
Am very impressed by this group - good information, jokes, and caring
people - a terrific combination.

Cause you know what?  No matter how determined I am that I will beat all
the odds for this thing, it is still dammed scary.

Suzanne

I also am trying to make my diet better (am the original junk food junkie),
taking good vitamin supplements, eating as many fruits as I can force
especially grapes, and an curious about the essaic (did I spell that right)
that many of you have talked about.

It is so easy for me just to stay home and sort of retire from the rest of
my life.  Thank goodness for wonderful loving friends and family.  My
brother is even coming in from Germany next week. And today I am making
myself go to Rehobeth - can't stay the night - don't have the funds, but it
is about a 2.5 hour drive so if my friend and I leave in an hour or two, we
should have a nice day.  I ahve always loved the beach and decided that I
wanted to see it NOW!  
It has always been very good for me.

Some peronal stuff -  adore all the wonderfule people in my life ; also
have two cats and love to read, shop and enter sweepstakes.  I am still
shopping a bit which I know I wouldn't be if I truly believed there was no
hope left.

I love mysteries and suspense and can truly recommend a book called "The
Alienist" which is wonderful - takes place in New York just before the turn
of the century and written by an historian which is wonderful because I
learned all kinds of tidbits about life then that probably would have
excapted me otherwise.

Oh yes, and two months ago I won two airline tickets anywhere American
flies.  Am going to use them in the late fall to see a friend I have not
seen in many years who just happens to live in sunny Ft. Lauderdale.

Hopefully by then my disability will have come through - if not I'll wing
it (excuse the pun!).


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