PAYING IT FORWARD: kidney cancer patients and their loved ones sharing personal journeys and information obtained along the way, providing support to those who will unfortunately follow our paths while also honoring those who came before us.

Chain of Love: reaching forward with one hand to those who paved the path before us, reaching behind us with the other hand to those who will unfortunately follow our journey.

We Share Because We Care : Warriors Share Their Personal Kidney Cancer Journey


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Saturday, September 29, 2012

September 2012: Kellie Vaughan Beucler

Featured and Written By: 
Kellie Vaughan Beucler

December 2011

 
My Journey with Kidney Cancer

               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!
 
 
 
 
 
September 2012
Kellie with Sadie and Holly
 
Afinitor Rash
September 27, 2012 
 

 
September 27, 2012

SUTENT FACE
 
 

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