----- Original Message -----
Sent: Monday, August 01, 2005 8:18
PM
Subject: [CML] what last couple days
brought to me
Finally I have time to email you. Last Friday I met Dr. Goldman at
NIH. I do not know why but when I was sitting in the hall and waiting
for his assistant to pick me up I started to cry. I realized that I cry
because I am lucky. When I first got diagnosed I got an oncologist
who is not a CML specialist. I found out that there is no CML specialist
working in the medical center my insurance is covering. I was not
satisfied. I was reffered to a CML specialist to Johns Hopkins just to
consult a BMT. That doctor is so nice that he is willing to see me at
least once in a three months so far. He did an HLA typing for me, did a
CCR test and always gives recommendations and suggestions to my primary
oncologist. I am so thankful to God for sending him to me. He also
planned another appointment with him in September to do a PCR test and get
some consultation. After couple of months I met Susan L., who was so
kind and told me about Dr. Goldman. I immediately emailed him,
unfortunately he did not respond, but I did not give up, I went to one
conference where he was and got an appointment with him. So until now I
met two CML specialists. That's what I realized sitting over there... I
did not know yet how wonderful is going to be a meeting with Dr. Goldman.
Dr. Goldman answered kindly all my questions, reviewed all the test
results, and confirmed that so far I had a very good medical care.
I asked him about a dosage 400 / 600 mg. I was put on 400 mg and
was doing fine so I was wondering why I couldn't stay on 400 mg. He told
me that if I can tolerate 600 mg he agrees with it.
After I had a lot of questions about why I am so sick, what could cause
it? I have been always healthy. I was thinking about some reasons.
First one was that couple years ago I was TBC positive. They vaccinated
me twice and also every single month I had an X RAY done. Right after
that time I was given a triple child's vaccination (against varicella and two
another diseases) because I was moving to the USA and there was no record in
my medical documentation about having it when I was born. I thought that those
vaccinations could somehow attack my immune system and make a change which
cause CML. Dr. Goldman wrote it down, but he said that he doesn't think
that it could cause my CML, however he did not like a fact with an X-RAY done
every single month.
Another thing I asked him was my mole which was taken off in February
2003. All my blood test were normal. I was dx in February
2005. I read a book from Erin Zammet
and she mentioned that she had her mole removed before she was
dx. He checked it and wrote down a comment.
I told him that since I have been living here I stopped walking and being
on a fresh air like I used to be in my native country. I feel that my body
needs more fresh air and movement, so I am trying to get back to my life
style. I am planning to go to work by bike and every single day to walk
or run at least for an hour. I try to spend every single lunch working
out, if possible outside. There is such a big questionare mark and
nobody knows why cml develops.
Anyway the most important thing for me was that I was thinking about a
stem cell harvest done. My insurance doesn't pay for this procedure and Dr.
Goldman said that he would definitely do it. He told me that he can do
it in NIH for me. I was thinking about Endrias, I think you have a
Kaiser too, so think about it. I am going to ask also a doctor at
Johns Hopkins in September and if he says yes, I will go for it.
Dr. Goldman is testing some vaccination over here. I am not
sure if he developed it with somebody else. Maybe somebody knows, let me
know if you do. I should ask more questions, but I did not. I
will ask him in two months when I am supposed to see him again.
He told me that they hope to find a cure soon, or at least something what
we will be able to live on for a long time, so we can live a normal
life. I know that all of us believe in it.
Also I got promoted today. I applied for one job couple days ago
and today my new supervisor told me that I got it. I am looking forward
to this change because at my present position I had a lot of time to think
about my disease and other personal stuff I am going through. Another
positive think is that I am going back to school. I am going to start
with two, maybe just one class. Until now I let CML to control me,
especially because of my primary oncologist who is always talking uncertainly
and always think about bmt, so I did not even think about going back to school
or looking for another, better job. I am glad I did it.
Talking about changing a job. If I would like to apply for a job in
another company, I know I am not supposed to say that I have a CML, but how
will I find out if their insurance company will accept me? I was thinking that
with my disease I can look only for a big companies, but still isn't there a
risk that they will hire me and after I can get stuck with an insurance? If
you have any suggestions let me know please. I love the company where I
work now, but there are some bad memories, some stuff from which I would like
to run away.
So what do you think, am I blessed? Definitely I think I am.
I am in the best place in the world right now because of CML specialists,
medical care, and nice and honest people.
Wau it is a long email. If you got here, thank you for
reading it.
Livia
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