My name is Tana Gotcher, Im from Amarillo, Texas and am 48
yrs. old (1956)
This is my story as a Carcinoid Patient. I am really not sure where
to begin so I will give a brief health history prior to Carcinoid
Diagnosis.
At seventeen I had a son he is my only child. At 25 I had to have
a hysterectomy. Around the age of 28 I started having a lot of stomach
problems. At one time I was so bad that they had to put tubes down
my nose and a feeding tube. They did exploratory surgery when I
stabilized and removed my gallbladder.
For about 6 months I felt great with no stomach pain, nausea or
diarrhea. Then the pain started again, just like the gallbladder
attacks. At first they were like once a month then a couple of times
a month then weekly exceeding to several times a week to even several
a day. I was hospitalized and treated a few times for pancreatitis.
I was on Prilosec then Nexium most of my life after that. They were
able to keep me from having so many attacks and eventually my weekly
trips to the emergency room for pain shots grew further apart. In
1995 I had severe headaches and back pain and had to see a doctor
for pain control. Since then I see a pain specialist about every
3 months and now take Kadian. The medicine that works best was Oxycontin
I do not know why I was changed to Kadian. My pain has not been
stable since they changed me I just got tired of complaining and
go along with what they have me on.
The headaches did get worse and I had dizziness that started about
1999. I had a lot of symptoms such as flushing, sweating, diarrhea
and nausea with bad pains in my right upper abdomen. They were always
running tests, scopes and x-rays, blood work. Sending me to all
kinds of doctors and even one telling me maybe I needed a psychiatrist.
At that time I weighed about 125 lbs. which was pretty much my normal
weight. The same doctor that thought it was in my head also told
me that maybe I had gotten lazy since I started gaining weight.
I decided to start swimming and went to my brothers apartment
where they had an indoor pool. My brother went and watched me and
visited. I told him I was going to do a couple of more laps then
get out. On return of my next lap I yelled for him, meet me
at the steps something is wrong. That was the last I remembered
until I woke at the hospital.
Now the road to Carcinoid begins. As Ive had so many problems
over the years who knows how long I have really had carcinoid.
December 1999
I woke up in the hospital with IV's and monitors everywhere and
my husband and brother at my side. Before I could really ask questions
my son came in and by the look on his face I knew it was bad. I
said, Okay guys, what's going on? and my husband said,
Its your heart dear. My heart?, I
said-- It couldn't be! I have low blood pressure! I am the
only one in my family with good blood pressure! They have made a
mistake get me a different doctor! He went and asked them
to send the specialist back in. Dr. Debra McCollum came in and explained
to me what was happening. She said I had a rather large hole in
my heart and right next to it an aneurysm. I said, Okay what
does this mean and what do I need to take. To my horror she
said I have booked an operating room for in the morning and we are
waiting to have you taken up to CCU. This is not happening.,
I said, You can fix it another way can't you? She said,
Maybe a year ago or even a few months ago but it is bad now
and it will start dumping blood into your lungs if I do not go repair
it. She said, I do not know what other damage has been
done you have had this since birth. The aneurysm is recent and thankfully
you made to me in time. So the next day I had open heart surgery
at the age of 42.
When I woke up the doctor was standing at the end of my bed. She
said, You are one very lucky girl a few more weeks and your
family would have been having a funeral. Your heart was giving out
and there is more damage. You do have congestive heart failure but
with medicine, rest and time I hope to get you stronger and you
will be able to live with it several more years. At that moment
I was just thankful that I was alive.
Over the next year my cardiologist took care of me. In February
2000 I was back in CCU with a very high pulse and they had to shock
my heart to get it to beat properly. I went through many trials
with my heart but the flushing and the sweating and the diarrhea
just got worse. By June 2000 I had gained about 50 lbs. and I was
miserable, not only with the symptoms but with the extra weight.
I had never weighed more that 135 and that was when I was pregnant.
How could I keep gaining when what I could eat went right through
me? Of course I had gone on Social Security disability after my
heart surgery and yes I was depressed.
January 2001
My cardiologist finally decided that all the heart tests he was
doing were coming out fairly normal. He said, I believe something
else is going on to cause these additional problems. He talked
to a few colleagues and decided to do a 5HIAA and yes it was high.
It came back in the 40's the first time and he sent me to Dr. Brantley
my endocrinologist.
He explained to me that I had Carcinoid and that is was rare. He
said, I have only had one other patient with this and it effects
your glands. The best thing to do is an Octreoscan and find the
primary and remove it. After that I should start feeling better
and he will know more about the next form of treatment. The scan
showed two lesions in my liver and I was told they were fairly small.
That one was deep in the middle and the second in the right lobe
up under my breast bone. After talking to some of the others they
decided to start me on Sandostatin.
March 2001
For several days I could not keep food down and everything else
went straight through me, nothing seemed to help. I swelled up very
bad in my ankles my abdomen and face. On the 4th day Dr. Brantley
sent me to the hospital and I stayed 18 days. They did all kinds
of scans and of course heart monitors and tests and scopes and it
seemed like I had gone back many years. The only difference is I
now had the heart problem added to it and of course the diagnosis.
My 5HIAA was up to about 92 and they gave the Sandostatin 200mcg.
1ml 3 to 5 times a day. They tried a biopsy of the liver but missed
it because of where the tumors are located. The Octreoscan showed
3 lesions now and the other 2 had increased in size some. Again
a primary was not located. After the attack was over and I stabilized
I returned home.
2002
This year I spent 3 different times in the hospital for attacks
like the one in 2001. They always do the very same thing and I do
not get anywhere. This went on pretty much the same way for the
next few years. The best part is somewhere along my journey I was
introduced to the Texas Carcinoid Group. I have only met one in
person and she is Ron's wife Myrna. Their son lives fairly close
to Amarillo in Friona and she came by to meet me on one of the visits.
Unfortunately Ron was having a bad spell and could not come. I feel
like I know both of them like long time friends because of the companionship
I get on line and the phone calls. I do keep emails up with several
others and to each of you thank you. I do not want to mention names
because I am afraid I might leave someone out and each of you have
become very special to me. I have exchanged phone calls and cards
with both Dann and Carol Anne over the years.
2004
The year 2004 was a very bad year and one that will go down in my
memory-book forever. First in March I started having severe spells.
It seemed I would just get over one and another would start during
this time my liver counts went off the chart and of course my old
heart began to act up more. I had gone on oxygen in 2003 so my poor
heart has deteriorated. Then April 24th I went in the hospital because
I was so sick and weak I could hardly walk across the room. I would
have almost said I was on my final days but my faith in God has
got me through so much that I knew in my heart I would recover.
I spent all of May in the hospital--my birthday, Mothers Day and
Memorial Day. I had all the celebrations right in my hospital room.
Of course they did the same old tests and they had to put in a central
line. The Octreoscan showed 3 lesions in the liver the original
2 bigger and a hemangioma. This time it lit up several other places
all in my abdomen and on the appendix, also in the colon. I told
them I didn't think I had an appendix and he said if not the tumor
is in that area. They decided another colonoscopy even though in
the past it had been clear. The scope showed nothing and he said
at the base of the colon he would have been able to see the appendix
and there was nothing there. They gave up looking for the other
tumors at that point and sent me home. I stayed home one night and
returned with a 103 fever and stayed 10 more days in the hospital.
It seems as if the 48 days I spent in the hospital put me right
back in the same place. I was over that attack and could take care
of myself at home but that was it. Still no primary location.
September 2004
At this point I am still just making it day to day, taking pain
control and the Sandostatin. Never have I been put on the LAR because
my doctor thinks I am on the maximum level of Sandostatin. The months
of September, October and November would mark another historical
event in my journey. On Friday, September 18th at around 5pm I fixed
myself a sandwich put it on a paper plate and started back into
the living room. The next thing I knew I was screaming and on the
floor thankfully my husband had just gotten home. He ran to me and
said where does it hurt I screamed and cried and he finally got
loud please tell me what is it. My arm help me I cried, he said
it does not look broken I don't see anything I said my arm the bottom
half of my right arm is not connected to the top part. Charles said
it is too it is all there no I said call an ambulance or get me
to the hospital NOW. We finally managed to get to the truck I was
in so much pain I was sick and dizzy, simply miserable. Thinking
back I am sure the hospital staff thought this lady is a big baby,
but I am telling you I can endure a lot of pain I could not bear
this. Comically they cut off my clothes got me in a gown and to
x-ray. The x-ray showed I had snapped my arm clean in two, above
my elbow I had a clean break and the bottom of my arm was not connected
to the top. They started me on morphine, splinted the arm the best
they could and sent me to a room. Everything was a nightmare. I
literally could not move myself up or down in the bed or up and
out. Laying right there in that bed is how I stayed until Monday.
The surgeon could have done the surgery Saturday but because of
my other problems he wanted all my doctors to see me first. I had
to have the surgery but the heart doctor decided to be there during
the operation so I had to wait. The surgery took place Monday 8
AM and he had to put plates and rods and my heart gave them fits
and I went on a ventilator for a couple of days. I wish I could
say all went well and I went home to recover. NO, my carcinoid went
crazy and my body rebelled and again I spent several days in the
hospital.
This brings me to the present and the only other change is I was
recently diagnosed with super ventricular tachycardia and Im
on more heart medicine for that. I wish I was able to say that there
is a happy ending or at least be able to share with you hope of
a treatment that has worked for me. All I do know is I have a stronger
faith with God because He is the only way I can make it through
each day. I have a wonderful support system. My husband is great
and works very hard to take care of me financially. My mother lives
down the street now and is over daily to help me or to just keep
me company. My son checks on me almost daily and wants very much
for me to have a better quality of life, he is an associate pastor
and youth pastor at our church. His wife is great to me and will
help me anyway she can. My greatest joy is my two grandchildren--Tristan
she is 6 and my grandson Aslan is 2. When they are here I can forget
my trouble for a while. I am hoping to go to the Mayo Clinic in
Minnesota in late spring but I have to get an okay from the heart
doctor who doesn't really want me to travel. This will only be possible
with the help of very special friends. I pray daily for myself and
all of my friends with carcinoid and can only hope one day a treatment
may be offered to give us a better life.
Tana Gotcher, March 2005.
Continued....
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