Re: [MOL] Introduction 0 albeit a bit longer than I intended [13726] Medicine On Line


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



Dear Carol,

Thank you for your beautiful response.  Like so many messages I read on
this group, yours truly touched me.

You did ask me some questions, so I will try to respond best as I can.

First - the day at the beach was about 90% wonderful - the other 10% I got
tired and when I get tired I get bitchy like you wouldn't believe.  I
forced myself to do much more than I should have and have been exhausted
all day today and really don't care.  It was worth it!  As luck would have
it yesterday was the day of the 20th annual sandsculpting celebration at
Rehobeth and that was fun to see along with the other stuff we did.  Some
of the sculptures were incredible!

I sympathize and empathize with you.  I did not have time either.
Especially with no primary site.  Thank god for the typing of the cancer
cells to the chemo.  Hopefully they have the right combination.  I now have
had 3 sessions in 3 weeks and (knock on wood) still have my hair and no
appetite loss.

Perhaps that is due to my quitting smoking - although some days I would
gladly kill you for a cigarette!  I live on nicorrette and some days the
patches.  I guess not smoking is getting easier, but it doesn't always feel
that way.

I may have mentioned that the day I was released from the hospital I bummed
a cigarette from someone outside and half killed myself on it.  I try to
keep that memory fresh in my mind.  Here I was having just had surgery to
drain all this fluid and the tube just taken out and the hole just sewn up
and barely able to breath and I was determined to smoke - now doesn't that
make a lot of sense!  :)

Oh, the reasoning of true addiction!

Re Johns Hopkins:  I have had two opinions from other cancer patients.  One
is that at Johns Hopkins the patient is just a number - thgey are primarily
interested in research and do not take the time to get to know the patient.

Therefore, it is better to go to a smaller hospital where the staff is
still highly knowledgeable, but both the doctor and the cancer nursing
staff take the time and energy to pay attention.  I was told early on -
before I was even fully diagnosed - by a cancer patient that the nurse who
actually administers the chemo is just as important as the doctor.  She was
absolutely right.

Of course the second opinion is go to Hopkins and see what they have
available.  

If you are near Maryland you might also want to check Univ. of MD medical
center - in some ways they are more advanced than Hopkins.

As for me, I chose the first option - slightly smaller hospital - doctor
who is highly respected and who seems to be doing all he can for me - the
minute I feel he is not I will look elsewhere.

As for the prognosis - they can tell you anything they want and it may be
accurate, but then again it may not be - I refuse to accept the possibility
of only six months crap!  A friend who lives in Florida told me of a friend
of hers who at age 35 was given 2 weeks to live so she and her husband
decided to go to the Florida Keys where she could die in beauty and with
grace.  That was 10 years ago, and she's still there!  Miracles happen
every day - Any law says you can't be one of them?

Barney sounds like a character.  Know he must be much company for you.  I
know lots of cat people - if you have to make a decision, let me know.

Take care of yourself, Carol.  You are worth it.  You are in my thoughts
and my prayers.

At 11:15 AM 8/1/98 -0700, you wrote:
>Dear Suzanne,
>I am also 51 and a smoker.  I developed a cough in Jan., 98, was 
>treated with two rounds of antibiotics, but the cough returned each
>time.  
>At that point, I decided to let it go (Late Feb or early Mar) until the 
>end of the school year.  I teach and I was taking a class. I was so 
>inundated with work, I knew I couldn't pursue it until June.  
>The day school was out,I went to my doctor.  The day after that I had a 
>chest xray which showed multiple abnormalities in the right lung
>and along side the trachea!  After that the roller coaster began.  
>
>I had no idea how difficult it can be to diagnose a lung problem. I
>spent 
>5 wks being tested and retested yet remained undiagnosed. Finally, I
>went to Philadelphia and was diagnosed within a week.  I was diagnosed
>on July 22, 1998
>with small cell carcinoma of the lung (right) with mediastinal
>involvement.  
>
>I was very disappointed, to say the least, about the prognosis I was
>given. I do not have the time to research all the literature as I must
>start treatment ASAP. I
>have tried my best within this short time, however, and I can only come
>up with standard treatment options.  I have been to Johns Hopkins
>and was also offered basically a standard treatment, so I am
>assuming that there is nothing out there or Johns Hopkins, one
>of the foremost cancer centers in the US, would know about it.
>Am I correct in this assumption?  
>
>Also, I am struggling continuously with my cigarette addiction.
>I can not believe that I still want to smoke, but I do.  Have you
>quit smoking and if so, do you have any tips?
>
>I am slated to begin chemo next week (cisplatin and etoposide) and
>radiation treatments. I think I fear the chemo and radiation more than
>death
>at this point.  But, like you, I don't want to leave just
>yet and I know that I must go through this and give it my best shot. 
>
>It sounds like you are handling the chemo well.   I am glad this is the
>case. I like your visualization techniques and will try to do the same.
>
>Like you I am trying to live a healthier lifestyle. I am eating better,
>trying to sleep better, and have gone for full body massages to
>relieve the stress.  I started on vitamins, too.
>
>I will not be returning to work in September and will probably find
>myself retired from my life, too. However, changes needed to be made.
>I had myself in such a rat race, that I was totally overwhelmed.
>
>I have one cat, Barney, who is always by my side. I worry about what
>is going to happen to him, if I have complications.  He was a stray
>who obviously was mistreated.  It would be hard to find someone
>to take him, because he has a bad temperment at times.  I have no
>problem with him, but I think most people would.
>
>Well, I hope all continues to go well for you. Take care.
>Carol
>
>PS
>Hope your day at the beach was great.
>
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