December 2011
It seems like a
lifetime ago when it all started, I was 32 years old the day my life changed
forever and I can still remember that day word for word image by image! I hadn’t been feeling well for several weeks,
had pain in my left side that would not go away, normally I have a high pain
tolerance and am not prone to rush to the doctor but something about this wasn’t
right and I was driven to pursue it. I
went to the doctor several times, at first it was thought to be a bladder or
kidney infection and I was given antibiotics and sent home. When the pain did not go away I went back to
my doctor and asked what else can be done.
At that time he scheduled me for an ultrasound on my Kidneys. I will never forget laying there getting the
ultrasound done and the technician paying so much attention to my right side, I
was getting frustrated and kept telling her, the pain is on the left side, all
the while thinking to myself, no one listens!
Several days later my
doctor called and said "you have a mass on your right kidney and I am
referring you to an urologist" I
was in shock, my mind reeling with fear and what if's and amazingly the pain in
my left side was instantly gone. I went
to my appointment with a urologist, he reviewed the ultrasound and said he
would like to get what is known and a CT guided biopsy, the word biopsy made me
realize this was going to be serious and the fear started to set in. I went for a CT guided biopsy which is where
with the help of CT scan images they insert the world’s longest needle into you
and try to get a piece of the mass. The
procedure was incredibly painful and I just prayed it would be over
quickly.
I returned to my
urologist what seemed to be the longest week later only to hear that the biopsy
was inconclusive and that he was sending me to a different hospital to have the
procedure redone. I could not believe I
had to go thru that horrible experience again.
To top it all off I was planning my wedding which was only two months
away. I remember going to the 2nd
hospital being prepped for the procedure with my mother by my side I laid on
the gurney and her and I were going thru wedding catalogs trying to pick out my
dress. The time finally came and I was
taken back dreading the incredible pain I knew was coming. This time the procedure was correct and even
more painful because it was done correctly and they actually got a sample. I can still remember feeling the actual
cutting inside, not something I will ever forget!
One week later, It was
Friday, March 31,1999, I went to the
doctor for my results and surprisingly for my personality I was not anxious at
all I walked in feeling confident it was all going to be fine. The doctor came in and sat down, I will
never forget, the first thing he said to me was "are you here alone
today" I instantly knew this was not going to be good. Then he said those words "you have
cancer" my first question was
"am I going to die" He said no
you’re not and proceeded to explain that I had Renal Cell Carcinoma stage 1 and
that he wanted to remove my kidney. I
was so brave, took it like a trooper, we scheduled a bone scan and x-rays to
see if it had spread anywhere and some pre-op work. I left the office and got into the elevator. I began to cry a little and the lady in the
elevator with me asked if I was okay, I immediately fell apart and by the time
we got to the lobby I was sobbing uncontrollably in a total strangers arms. I can’t remember her name but she sat me down
in the lobby and asked if she could call someone for me. I gave her my mother’s phone number and just
sat there crying and shaking. The woman
must have also called up to the doctor’s office because the next thing I
remember the nurse came down and escorted me back up to wait for my mom because
I was in no condition to drive home.
I was taken back into
an exam room past all of the people in the waiting room that had such look of
concern and compassion on their faces.
The doctor came back in a gave me a big hug and sat and waited with me
until mom arrived. Apparently mom was in
the pool when she got the call because I remember her showing up in shorts,
slip on shoes and her bathing suit, I don’t know what the woman who called told
her but it was bad enough she didn’t even take time to dress. Mom and I sat and talked to the doctor and he
told her the same news he told me. The
look of concern on her face broke my heart.
I left my car at the doctor’s office and rode with mom back to her
house. On the way home I asked mom if we
could go by the church and pray with one of the ministers. We went to the church and the only person
there was the secretary she said we were more than welcome to go into the
chapel and pray. I remember sitting in
the front pew of the empty chapel looking up at the beautiful stained glass
picture of Jesus with the lambs and begging him not to let me die. A few minutes later one of my favorite
ministers came in, he said he was on the golf course in the middle of a game
and God told him he needed to go to the chapel and to go now! We sat and prayed for a while then went to mom’s
house. When I got there my dad and aunt
and sister were already there along with another one of my favorite
ministers. So the long journey began
surrounded by family and faith.
The following week I
went for a bone scan and x-rays it was on a Thursday and I remember thinking
great, now I’m going to have to wait all weekend to find out if this stupid
cancer has spread anywhere, dreading the long wait. Saturday morning @ 8 am my doctor called me
and said that the tests showed no metastasis and he knew I was sitting there
waiting to hear so he didn’t want to make me wait until Monday! I was really starting to love this man! Surgery was scheduled for a couple weeks
later and I remember being surrounded by love and support from my family and
church family. I had so many people
praying for me it just blew my mind how empowering it was.
The day of surgery
arrived April 21, 1999. I remember being
in pre-op all ready to go and the nurses let my entire family and minister
in. Everyone was standing around my bed
and we prayed, even the nurses and doctor prayed with us. Surgery went very well, total right
nephrectomy and I was in ICU for 2 days then in a regular room for 3 days. The doctor stated that the cancer was all
encapsulated and with removal of the right kidney there would be very little
chance it would ever come back and we would do scans and x-rays every 6 months
and then eventually once per year.
For several years I
continued with my scans and x-rays on a regular basis with no recurrence, I
still had a deep down fear that only cancer patients can understand but I was
starting to accept that I had survived and the nightmare was over.
I moved to Kentucky
from Florida in 2003 with the job I got I couldn’t afford the health insurance
so I had x-rays a couple times but no scans as the money was just not
there. As it always does life goes by in
an instant and I remember proudly displaying on Facebook that I was a 11 year cancer
survivor, finally after 11 years I was to the point where I didn’t think about
it every day and the fear although still there was not in the fore front I was
43 years old at the time.
Wow several days after
posting my celebratory 11 year mark I wasn’t feeling well, had a swollen lymph
glad in my neck very tender and painful so I went to my Doctor. Since I had a history of cancer and hadn’t
been checked in so long he went ahead and ordered a CT scan but felt it was
more likely an infection and gave me some antibiotics. The date was April 18, 2011 another date that
will be engrained in my memory forever!
I went early that day for my scan and was told the radiologist would
read it right away and fax the results to my doctor so I should have results
the next day. I worked midnight shift so
after my scan I went home and went to bed.
At 2 pm that afternoon my doctor called, kind of surprised me to see the
caller i.d. I answered the phone half
asleep only to hear "you have a large mass above your left kidney and two
spots on your left lung" She was so
very cold and matter of fact about it that it took my breath away. I immediately knew it was cancer and that it
had returned but how after all these years.
How can I go thru this again and this time it had spread.
I called my parents in
Florida sobbing incoherently that I didn’t want to die, there was no comforting
me, and my poor husband just sat on the bed unable to say anything I think he
was in shock as much as I was. So after
11 years, round two begins....
My MD referred me to an
oncologist ( a word I have grown to fear and hate). The oncologist referred me to a surgeon who
was of the same mindset I was, it has to come out one way or the other we are
not going to mess around with a biopsy and poke the bear! I was scheduled for surgery on May 12th to
remove my left adrenal gland and possibly part of my kidney if the tumor was
also attached. My parents immediately
drove up getting here in record time, what a relief to be held by mom and dad
in the wake of facing another life threatening bout with cancer!!!
I had a PET scan which
showed the mass was cancer, devastating news but not surprising. Surgery was unbelievable, I woke up with an
incision from one side of my stomach all the way across like I had been cut in
1/2. The Doctor informed my family that
the mass was the size of a softball and had overtaken my adrenal gland. He removed the mass, the adrenal gland and my
gall bladder as he noticed while he was in there that it was full of large
stones, not often you get a freebie when it comes to surgery! I was in the hospital for 5 days, no food
just I.V. fluids, pain was managed with an IV drip and was pretty tolerable. I came out of the hospital 25 pounds lighter
and home to recover. I asked the doctors
about the spots in my left lung and was told the PET scan did not register them
as cancer so they were not concerned about them at this time. My recovery was long but uneventful and I
returned to work (a 911 dispatcher) happy to be useful again. I had a follow up appointment with my
oncologist whom I didn’t really care for and he wanted to put me on a drug
called Sutent just in case. I was not
really knowledgeable about kidney cancer or the drugs that were currently being
used but I was not eager to go on any at this point. I consulted with my MD, the surgeon and my
good old faithful urologist in Florida, all of whom agreed I did not need to be
on Sutent at this time as the side effects were horrible. I asked my MD if he would be willing to
handle scheduling future checks and scans because I really did not wish to
return to the oncologist, we just didn’t click.
I had my first follow
up PET scan after surgery on August 18th and was very anxious to hear the
results. It took two weeks and several
calls to finally get a report which once again sent me into despair. One of the spots in my left lung had grown
from 5mm to 8mm in less than three months, this cannot be good!! I asked my MD to refer me to an oncologist
at a leading University Medical Center in Nashville, approximately 1 hour from
my home in Kentucky.
I went to Vanderbilt
Ingram cancer center on September 7,
2011 and met with my new oncologist. My
husband and I immediately liked him and felt he was on the same page we were as
far as future treatment. He was of the
mindset to do scans and if something pops up surgery to remove unless it is in
an area that can’t be surgically removed then he would put me on Sutent or one
of the other trial drugs. He was however
concerned about the growth of the spot in my left lung and felt surgery was
necessary to remove it.......Round Three begins...
The next week I went
back to the cancer center and met with a
thoracic surgeon to discuss a plan of action.
He scheduled me for Video Assisted Thoracic Surgery to remove the spot
in my lung. This consisted of three
relatively small incisions going in between my ribs to remove the mass. I had surgery on October 11, 2011 and the
mass was successfully removed. The
pathology confirmed that the mass was cancer and it was metastasized Renal Cell
Carcinoma. I had a follow up appointment
on November 9th with the oncologist and surgeon to see where this journey will
take me next. On November 9th
I went for my follow up, had a chest x-ray which showed “No Evidence of
Disease”. I was beyond excited and so
relieved I could not wait to call my parents and tell them the good news! With the help of God and excellent doctors, I
have won again! My oncologist scheduled
me for a follow up CT scan in January and my husband and I went out and
celebrated! At the beginning of December
I started not feeling well again and the lymph node in my next was swollen and
tender again. I called my oncologist and
asked if we could move the scan up just to be safe so he scheduled it for
December 13, 2011. On December 14th
I received I received a call from my oncologist and again I will remember word
word this conversation. I could tell by
the sound of his voice something was not good.
He proceeded to tell me that the scan showed wide spread metastasis with
so many tumors in both lungs that the radiologist stopped counting, it also
showed a tumor on my right adrenal gland, as well as several on my chest
wall. I got up the courage to ask “how
long do I have” and he answered ONE YEAR.
We scheduled an appointment for January 4th and I hung up the
phone. I remember sitting on the bed and
my husband walked into the room, I said boldy, “im screwed the cancer is
everywhere he said It is terminal and I have one year”. The despair, fear, disbelief, anger all hit
me at once and there was no controlling it.
My mind instantly went to my parents and how was I possibly going to
tell them their baby girl was going to die.
At the time I received the news my mother was in the emergency room down
in Florida with a possible bowel obstruction so I decided to wait to tell them
what was going on with me. About an hour
later my father called and told me mom was had been admitted and was in a room
but they were confident she would be fine and that she was resting well and
feeling better. I remember asking him if
he was calling me from her room and he said yes, I said can you go out into the
hall or somewhere private so he did.
Telling my father the devastating news I had just received was not
something I would ever wish on anybody.
He began to sob on the other end of the phone and I cried along with him
as my heart was breaking hearing him cry.
At this point my husband and I decided to move back to Florida so I
could spend my remaining time with my family.
In January we went back to my oncologist who put me on Sutent and we
began to pack up the house for the move back to Florida. On February 11th I had a CT scan
following 1 round of Sutent. The scan
showed stable no progression which was so encouraging. We have now moved back to Florida and are
staying with my parents until we can get on our feet. I love my new Oncologist at Palm Beach Cancer
Institute. I have just started round 3
of Sutent, the side effects came quick and hard this time. I am counting the days until I am on
break. I had my first scan since moving
back to Florida on April 30th, again it showed stable, no
progression. I am currently on round 6
of Sutent and still tolerating it but the side effects are horrid. Some days I just want to give up but I NEVER
WILL!
Update: Kelly never did give up. She won her battle with kidney cancer by the way she lived her life. She is no longer with us here on earth but she will forever be in our hearts!
Update: Kelly never did give up. She won her battle with kidney cancer by the way she lived her life. She is no longer with us here on earth but she will forever be in our hearts!
September 2012
Kellie with Sadie and Holly
Afinitor Rash
September 27, 2012
September 27, 2012
SUTENT FACE
