I am really glad that you hit it off so well with your
oncologist and felt a connection.... How did the meeting with the surgeon go
today?
I have owed you an email responding to your question
about my cancer and I am going to answer that right now...May I warn you that
this is the story and is very long....
September we moved and having spent 3 days in a 115
year old stone basement packing up (I have allergies to mold) I thought that I
was having sinus/allergy... I had smoked for 30 years and had quit January
1997, but went back to smoking after a few months... 5 days after we moved
here I couldn't unpack all day and was spending part of the days on the couch
with flu/sinus infection.. So I called the doctor and went in for help..
She gave me antibiotics and I came home and got worse... I was on the
couch all days..
I called her office a week later and told them the
pills weren't working and I needed to come in... Was on a Friday and they told
me to take the final two days worth and then call if I wasn't well. I told
them that two days wouldn't make me feel that much better and they still said
wait. By Monday I called back and they said come in and I couldn't
drive... So they phoned in a different
prescription and my husband brought
it home. This didn't work either and I called again and they set an
appointment.. I went in and she decided to order chest x-rays for me as well...
this was on a Wednesday.
On thursday evening I got a call from the nurse saying
that my doctor wanted to see me as her first appointment on Friday, before she
started seeing patients... I asked her if this was serious and the nurse
said no, that if it had of been the doctor would have called me
herself..
So I turned down 3 offers to drive me to the doctor on
Friday and drove myself. When she walked in, she opened my file and said
there is no easy way to say this, the x-rays showed a mass in your lung. I
asked "what does that mean?" and she said "Carla, everyone has
known for years that smoking causes lung cancer."
She said there really wasn't much that she could say,
that she was going to have the nurse schedule a CT scan ASAP. She asked if
I had any questions and I did "did this mean I was going to
die"? I mean can this be cured?" I don't
know.
After the nurse came in and told me that my CT scan was
scheduled for Sunday at the hospital, I got up to leave and as I opened the door
to the waiting room which was full, the tears started and I came back in.
The nurses were really kind and took me to the back and cleared out an office so
I could cry it out and see who could come pick me up...
I called everyone and no one was home.... I
couldn't track down my husband, or my parents either... The only friend I
could reach was alone in the office and couldn't leave. So I called my
church to see if anyone was there and got in my car. As I drove around
I-275, I couldn't see the road. I truly don't know how I drove from
Montgomery to Eastgate, which is about 20 minutes...
I got to the church and fell into a dear friends arms
and we went into the sanctuary and I told her and we prayed... The
Pastor returned and I met with him as well. I drove home and started
making phone calls.
Sunday was the CT Scan. The following week I saw
a pulmonary specialist and he scheduled me for a bronchoscopy. In for the
pre-surgical testing, bronchoscopy and they couldn't get a good biopsy...
so they scheduled another... same routine and after a couple of days the same
answer.... no good biopsy..
So they said I would have to have surgery for a
biopsy. I was put through pulmonary function tests and sent to see a
surgeon. He then explained to me the procedure and I had a fit to
think that they would do that type of surgery for a biopsy... especially since
they thought that if it were small cell
cancer, or hystoplasmosis they would just close me back up..
I asked the surgeon if there was another way and then
back to the pulmonary specialist and was told no... I was so
depressed. I was scheduled for surgery in 2 weeks. I
stayed home and cried alot... Then a friend of mine called and said
"Carla, what is wrong with you? This isn't like you to take this
lying down and not put up a fight and I can't believe you aren't getting atleast
a second opinion".
This was close to the end of October and I was
exhausted and felt like I had already gone through all that I could. That
little bell went off though and I knew that she was right. So I scheduled
an appointment with another surgeon and tryed to get one the same day with a
third... This was on a Thursday and surgery was scheduled for
Tuesday. I saw the second surgeon and he concurred with the first.. In
fact he offered to do the surgery with the first surgeon as a team, as my tumor
was located in the right bronchus and right up against the pulmonary
artery.
I liked both of the surgeons and felt they had both
explained well, the first showed me pictures, the second was good, but there was
a bell ringing in my head, especially when as I was leaving I told him I had one
more opinion and who and he seemed a little testy and asked me why I was going
to see him. Well I am a little spunky and that was enough to make me
go, so I drove over to the third doctors office, though I was actually supposed
to call first... Well I sat and waited and I got to see him. When he
walked in, he picked up my x-rays and I popped off and said that I could already
tell him everything he would see and I knew what had to be done.. The good
news is that he is actually very much like me and he chuckled a little and
suggested that I let him look and decide..
Well, we looked at the x-rays, he called in some
visiting associates and asked their opinions (which concurred with his).
We took the x-rays over to the hospital radiology department and they gave
theirs... This doctor had a different procedure which he pioneered for
getting to the lung and he said that even if he had to remove the lung he could
do it through the 4" incision and without breaking a rib.
I can't tell you how I felt after I met him and I
bought into him. There was such a strong feeling that I had been led to
the right person and I think I almost begged him to do the surgery. I
called my primary care doctor and told her that no matter what I was going to
have this doctor do it and I expected her help if I had any problems with the
insurance company..
The next day was Friday and I was scheduled for surgery on Monday, Nov.
3rd. I called back my pulmonary specialist and asked him why he had not
told me about this doctor and his procedure. He said that the first
surgeon had looked at my CT scan and x-rays at Bethesda and so he felt
obligated to send me to him.. I asked how he could do that when I had
specifically asked if there was anyother way.. He didn't have much to say
and I told him I was changing surgeons and I never heard from him again. I
then called surgeon #1 and canceled the surgery, I called the hospital and I
called surgeon #2 and told him of my decision.
Monday I went in for surgery, expecting to be closed up after the
biopsy. After five hours of surgery and one hour in recovery I was taken
to my room, with no chest tubes..and no lung.. I remember my doctor coming
in and asking him how it went. He said he got it all. I was so
relieved.
What I didn't know then, was that meant that he got clear margins in the
surgery and removal of the tumor and I would need to see an oncologist in
3 weeks and the oncologist would then tell me that I had a 30-40% chance of
living 5 years, but the first two years were the most critical.. I felt
like a cat freaked out with my claws locked into her ceiling and I couldn't get
down!
This was the day before Thanksgiving and I wanted to cancel going anywhere
on Thanksgiving, but we went with my parents out to dinner and then the kids and
my brother and his kids all came over and I told them all. Everyone tried
to carry on normally, but it wasn't a normal day.. I was still numb... The
first oncologist said to do nothing and she would do x-rays in 3 months.. Well I
have no confidence in x-rays as I learned that my tumor was atleast 2 years old
and I had had 3 sets of chest x-rays done, including one set 2 months before the
ones that showed the mass..
I then went to see another oncologist, who I liked very much and we spent
an hour together discussing all of this thoroughly, but he never even examined
me. My surgeon had scheduled me for a PET scan and I asked this oncologist
what he thought of them and he said they were an expensive test trying to find a
place that it worked. He said that it had been invented in Michigan 10
years ago and wasn't good.
So I went back again to my surgeon and I was stressed. I told him
that I was having a problem finding an oncologist and if I bought into him...
which I believed in him, how could I go to an oncologist that didn't agree with
him and what he believed worked? He then sent me to the oncologist that I
now see.
I have been very blessed here too. Though he and I didn't agree about
treatment.. He wanted to do chemo... taxol and carboplatin and I prayed and
prayed and couldn't find peace with the chemo and turned it down. Once he
was sure that I couldn't and wouldn't do the chemo, he has still been there
supporting me through this cancering journey... but we still have some
differences that are major.. Still, I know that we can communicate and I
believe that he will support my decisions and beliefs..
He says if the cancer comes back then there is nothing he can do for me,
not chemo not anything. He said I would die. He feels there is no
reason for finding it early as it will make no difference. I believe that
it will make a difference. Now professionally, I am sure that he is
working through his past experience and statistics.
I am not a statistic.
I know he believes in the power of prayer, faith and belief. He is
the one who said to me that whatever I believe will work, will work.
He sat and held my hand while I cried
after seeing the gynecologist who found some abnormal cells and frankly
hurt me alot. He is caring and he has said he will be there to support me
through the cancering journey and I believe he will.
So now you are up to date with my physical part of this cancering
journey. There has been so much more emotionally and that is still
revealing itself in many ways. God has done some wonderful things and
given me many blessings through this too. I have changed and am growing
from all of this. This is also going to make me make some changes in my
life, but I have decided that I need to be true to me and I either want to live
happily or die at peace and if I have anything to do with it all, it will be
both!
Wow, I feel like I have rattled on for days and I am sure that you do
too. By now I am sure that no one else but you got this far, and you may
have given up by now too. LOL! I wanted to write this much to you now,
because you went to see the surgeon today and I have a really good idea that I
know what you heard and how you feel. For one thing I wanted to show you
about additional opinions and for another, I wanted to let you know that I
really do understand...
I will be here for you and I promise that though I am active and I tend to
say what is on my mind and in my heart... I am also a very good
listener... Let me know how it has all gone.... May God Bless
you. With Love, Carla
