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 9^th 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 14^th 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 4^th 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 11^th 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 30^th, 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

 

 

November 2011 - Sarah Yule Anderson

Featuring and Written by: Sarah Yule Anderson

To read Sarah's story, please click below:
Sarah Yule Anderson's Story: Kidney Cancer And Learning To Live With It!

Thank you so much Sarah for sharing your story with us ~ Leigh

July 2011: Warren Lewis

Featuring: Warren Lewis
Written By: Liz Lewis

Our story beings in August 1996. I saw the cutest boy across the room and over a period of a few weeks finally got him to ask me out on a date. On our very first date, I told him we would be married someday. He responded "I know". A few short months later, we were engaged, married a year later and welcomed our first child, Warren III, shortly thereafter and our two little girls followed, Jamison and Jennifer.


Ten years later, in July 2006, Warren started to fall asleep every night before 8pm. He was also losing some weight, but we didn't think anything of it. With 3 young kids at home, the youngest of which was only 12 months, being exhausted was pretty much expected. In August, Warren decided to go in for a check-up to our family doctor. No one really expected anything to be wrong as he was a healthy 42 yr old non-smoking male, who just had blood work, urine work, etc and was approved for life insurance in April. Our regular doctor wasn't there and we saw a new doctor - she was young and eager to help get to the bottom of the fatigue, but everyone agreed it was most likely fatherhood. The next day he received a call that his blood work came back with elevated levels (I can’t remember of what) and he should get a CT scan. Once again, we really didn't have a clue how serious that could be - figured it was routine when they couldn't find anything.

On August 31, 2006, we heard the news which will forever have changed our lives. Warren had a grapefruit sized tumor on his right kidney. Our family doctor said the prognosis was "excellent" and referred us to surgeon. The next day we saw a surgeon and he said "it's very worrisome and not good". There were questionable spots on his hip, spine and lungs. For the next 2 weeks he underwent a lot of tests, bone scans, MRI, another CT - to determine if it had spread, all anyone could tell was that it was HUGE but appeared to be contained, huge as in 14cm - his entire kidney was now a tumor. We fired the surgeon we were suppose to see based on his concern he wouldn’t be able to get all of the tumor out. With the help of other kidney cancer patients we met online, we were able to find a referral to the best urological surgeon in Kansas City. On Sept 14, 2006, he had the tumor removed, it had adhered itself to the liver and grown its own “immense” blood supply based on the surgeons report but appeared to be contained. A week later in receiving the pathology report, we found out it was much more aggressive than they thought. He was diagnosed with Stage 2 clear cell kidney cancer, Fuhrman grade 4 with sarcomatoid features. Based on the size of the tumor and its Fuhrman grade, we knew Warrens chances of recurrence were very high. Because of this, we looked into clinical trials; but, given our having 3 kids at home, we didn’t want one that would have significant side effects. We chose a trial that utilized the immune system to attack the kidney cancer cells which may have been lurking. This required us to drive every week for the next 6 months from Kansas City to St. Louis for an infusion of a drug called Rencarex, this trial drug was to basically put a bull’s-eye on the kidney cancer cells in the body and then Warrens own immune system would attack them. We do not know if he received the drug or placebo but for the next 2 1/2 years, Warren remained cancer free with a few scares along the way which turned out to be nothing. We hope the drug proves effective and that it helped delay the recurrence,  which did happen later than anticipated.

On February 13, 2009, the doctors told us Warren had a "tree in bud" appearance on the lungs which was suspicious for RCC and two significantly enlarged lymph nodes. In the weeks that followed, he would have two biopsies with one confirming metastatic kidney cancer - lungs, lymph nodes and a spot on the pancreas which is unknown if RCC. We were very fortunate that our local doctor was a regional expert and a supporter of HDIL-2. Warren underwent a series of tests to confirm he was a good candidate and in April 2009 began an intense treatment of HDIL-2.  He completed 8 doses the first week and 9 doses the second week. The first set of scans a month following treatment showed stability. He then went in for more HDIL2, weeks three and four.  The following scans showed shrinkage.  After HDIL-2 treatment weeks five and six, he was declared NED (No Evidence of Disease) which is what every cancer patient loves to hear. We have been so fortunate! The last two years, he has lived as a Stage 4 NED kidney cancer survivor. We live a lot of life, love on our three kids - now ages 5, 7 and 12; and we thank God for all of the wonderful blessings this cancer journey has brought into our lives - the people we have met, the stories we have heard, the kindness of strangers. We believe our faith has carried us through, that in all of this craziness our children are becoming more compassionate, empathetic people who will carry these traits with them throughout their life. So, while we would never wish this on anyone, we do feel very blessed for the perspective it has brought to our lives and the faith it has strengthened.

Thank you all for supporting each other,

Liz Warren

June 2011: Aimee Dowell

My name is Aimee Niree Dowell, I am twenty years old and I have a metastatic, papillary cancer called Translocational renal cell carcinoma. Renal cell carcinoma is kidney cancer.  Kidney cancer is usually an old man’s disease, translocation renal cell is usually found in small children up to the age of five.  I am obviously in neither of these groups, the following is the story of my conquest, thus far, with this terrible disease.

I was born into a family that is pretty close knit and has much love for each other.  My parents were married in November 1980; my oldest brother Dean was born shortly after in April 1981; two years later Ben was born in December 1983; finally, 1990 came along and I was born in Madison, Wisconsin. While growing up, I was closer to my brother Ben.  Though there are seven years difference in age between the two of us, he still played games with me and spent time with me while we grew up.  Mom went to school to be a C.N.A. when I was a toddler and also held a job, so I had many babysitters.  My Mom spent as much time as she could with me when she was off.  One of the activities we did together was planting flowers in the spring.  One of these said flowers, that has been planted every year, is the marigold.  Well this flower was planted every year up until 2009, the year I graduated high school, these beautiful flowers were absent that summer because of the rush we had been in during the spring, but we aren’t to that part quite yet.

Through elementary and junior high I was a smart, independent, child, usually trying my best to succeed, never trying to fit in or to hide into the background; I have always embraced my individuality.  As soon as I learned to read, I knew I loved it and I read all the books I could get a hold of.  I also loved making up my own stories, and in third grade after studying poetry, I started writing poetry all of the time.  I always had good grades in my classes, and teachers always said how I was a pleasure to have in class.

In 2000, my brother Dean was in an accident were he broke his back after falling inside of a grain bin. A few years later my Dad had three round bails fall back on to him breaking his femur and his pelvic bone.  That October, the day after my thirteenth birthday, my father had a heart attack caused by being taken off of blood thinners too soon.  All of this was very stressful and scary for our family, but we pulled together and got through it.

In the summer of 2005, before I entered high school, a friend and I went on a bike ride that went wrong. While going down a steep hill not too far from a good friends’ house, I lost control of the bike that I was riding.  All I can remember from this bike wreck is going over the handlebars.  Thankfully my friend kept calm even though I was unconscious and covered in blood.  He went to the closest house where he called 911 and my mother. I was in a coma, scale 7, for a week.  I had sustained a traumatic brain injury, a torn rotator cuff, a ruptured spleen, and scars that I still have today.  I was in the hospital for 28 days, and in rehab for about 21 days; relearning everything that is necessary to live a close to normal life.  Still today, I suffer from headaches from my accident, I no longer take meds for them.  I stopped taking those medicines right before my senior year, wanting to end my high school years un-dependent of any medicine that promised to relieve the pain but didn’t.

I started, my freshman year with all the same classes, few accommodations, and followed out my high school career with a 3.2 GPA while taking college bound courses and over scheduling myself most of the four years of high school and seldom having a study hall.  I had been told my freshman year that a C or a D was all that was expected of me.  I would never allow myself to slack off and achieve less than what I know I am capable of just because other’s expectations of me aren’t high.  Obviously, I live to shatter expectations and to prove others wrong.  I have never wanted and never will want to be written off as average or run of the mill woman.  I have overcome too many obstacles in my life not to have a self-esteem and not believe that I am awesome and very much loved.  In 2009, my graduation year, Mom and I did not plant any Marigolds because we were too busy planning my graduation party and landscaping the gardens in front and behind our modest country home.  I went to NYC for my class trip, my going was almost completely paid for by my ambitious and determined fundraising.  Though the trip was fabulous, I was pretty fatigued, but wrote it off as normal.  Throughout my high school career I was sick a lot and missed a lot of school senior year not being an exception, I missed the most my senior year.  Also senior year I suffered from a few UTIs and experienced more pain than usual in my lower back.  I didn’t know what was going on, but figured it must be normal if the doctors weren’t worried. Right before I went to see some friends in New Orleans, during late summer 2009, I had my third UTI in the past year.  On this trip, I was also very fatigued but wrote it off to the change of weather and bad shoe choice.  A few weeks after I got back from this trip, I was going to college in a small town about thirty minutes north west of my parents’ home.  The weekend I moved in I was feeling fatigued again and felt like I was getting sick, but wrote it off to the hot weather.  The next few weeks I was busy with my fifteen credits of classes.  When I wasn’t in class, I was either making friends in my dorm or attending a club meeting.  I was involved in art club, Tai Kwando, swing dance, an anime club, and a club promoting equality; GLBT.  Three weeks into classes, I started taking naps in between classes.  That Thursday I noticed dark blood in my urine and decided if it didn’t get better that I would make a call to the on campus wellness center.  I finished my classes that week and started studying for the upcoming week of tests.  On Sunday, I received a call from Dad asking if I wanted to join him and mom that afternoon for some shopping and lunch.  Of course I said yes ~ what with me being a Daddy’s girl and missing spending time with my parents.  While out with my parents, I forgot to tell my mom about the blood in my urine because I was enjoying my time enough to forget about my troubles.  Seeing as my mom is in the health care field my father, brothers and I always have came to her for advice about medical problems.

Monday, September 21, 2009, I woke up too late to go to my first class, a good thing simply because the pain in my back wasn’t enabling me to do too much.  I barely was able to get dressed that morning. I placed a call to the wellness center and made an appointment for that morning.  At my appointment I was informed that it was not a UTI, the blood in the urine was the color of dark cola.  I was told that I either had a kidney stone or a kidney disease.  They needed blood tests done to figure out what was wrong; therefore, they sent me to the nearby hospital.  I went via taxi since I hadn’t a clue who to ask for a ride with classes going on and my mother was working.  On September 22, 2009, I went to the doctor and was informed that they wanted scans to be done.  I asked for them to be scheduled for the afternoon because I didn‘t want to miss more class and I had a test, they kindly obliged.  When I went back to my dorm, I asked a girl that lived in the room next to mine, that up till now I had never talked to, for a ride and explained the whole thing to her.  She was very nice to me and agreed to take me and bring me back seeing as I was really sick and something serious was going on.  Later on, I came back to the wellness center to find out the results.  In the doctor’s office, I was informed that there was a mass taking up a great deal of my right kidney and that I most likely had kidney cancer.  It all seemed so unreal, like a cruel joke.  It continued being very hard for me to believe for quite awhile.  I gave the doctor my mother’s cell number.  He called her and told her the importance of her coming to the wellness center to pick me up.  He explained to her that he had scheduled an appointment with an oncologist in Iowa, not too far from where we lived in Illinois, for the next day.  While waiting for my mother’s arrival, I sat in a comfortable chair, crying and being told of the possibilities I had for college; such as withdrawing for the current time, but that ultimately it would be discussed more the following day when the oncologist shed more light on the situation.  When my mother arrived the doctor explained everything to her. Afterwards, we went to my dorm where I grabbed a few items believing that I would be back soon, and I gave my thanks to the girl next door and told her how bad things were.  Then mom and I left for home with my few belongings in the back of the car.  Mom and I decided not to tell many people about what was going on.  Besides Mom and me, Dad would be the only one in the family to know for quite a long time.

On the afternoon of September 23rd, 2009, I was informed that I had kidney cancer and that I should put my health first and withdraw from school.  The oncologist said he would set up an appointment for the next week with a kidney surgeon in Iowa City.  Because kidney cancer is fast moving, he wanted to make sure that we caught whatever was going on before it was too late.  He also had a letter dictated for my withdraw from college.  The next day my Mother helped me move out of my dorm room, return all of my books and all of the formalities of withdrawing from college.  While cleaning out my dorm room, I also worked on saying good-bye to the few friends that I could find during a school day.  When we had walked into the dorm room, there was a rose on me desk from the KAE sorority, a sorority I had been looking into joining and I had attended a small “luau” party the previous weekend with a girl on my floor of the hall.  Sadly, I cannot explain adequately enough how much I was pained to leave college.  I loved college, I thrived in this environment, even though I had only spent four weeks making friends, spending time in clubs, and fitting in for what seemed like in the first time in my life.

Between September 31 and October 1, I met with the surgeon who would be removing my kidney and who set up an appointment with the oncologist I would see after my surgery.  It was explained to me that kidney cancer was usually found in elderly men, but they told me to hope for Hodgkin’s lymphoma; a curable kind of cancer that is generally found in younger people.  Those two days were basically a blur to me.  I remember mostly being told that the doctors were unsure about what I really had and what we would be doing to cure it or if it could even be cured, also they were unsure about when they would be able to get me in for surgery.  October 9th was my 19th birthday, it wasn’t anything too special seeing as my mind was more occupied by what was going on medically.  My brother’s, their significant others, and my few month old nephew attended the small get together at my parents house for my birthday.  They still didn’t know what was going on, we were still keeping quiet about it until we really knew what was happening. I was suffering from severe pain still.  October 14th I was in such severe pain that I had a trip to the ER where they called Iowa City scheduling the nephrectomy for the following Monday, October 19th. Some time in those 5 days we told all of the family members about what was going on, catching them up on what little information that we knew.  October 19th came with no surprises, we left early that morning before the sun rose, as it was a 2 ½ hour drive to Iowa City and my surgery was scheduled to be first.  Ben and his fiancée Becky wanted to be there with me so they followed behind us to Iowa City in their own car.  There isn’t much to say about that day besides that everything went smoothly, they removed my right kidney, the surrounding lymph nodes, and the adrenal gland.  They had made an incision about 12 inches long, diagonally across the front of my stomach.  This scar has healed up beautifully in the past 18 months.  I was in the hospital from Monday till the next Saturday.  My mom stayed with me for most of that time.  Wednesday wasn’t a very good day at all, besides all of the pain I was in, the doctors were worried because my temperature was elevated along with my heart rate.  They sent me for some scans and found fluid in my lungs.  My mom immediately called both our pastor and a prayer warrior from my church, both know me well and are good friends of mine.  They started up the prayer chain for me that night, though there had been many prayers sent to God pertaining to my cancer way before this.

The next morning I was scheduled for surgery, when they scanned me again to check the placement of the fluid, it was no longer there.  We praised God for this miracle.  Not only that, but my heart rate and temperature was back to normal.  This all helped me in being ready for leaving that Saturday.  A few weeks prior to my surgery, my family had gone through the efforts to turn the den, the small room off of our living room, into a bedroom for me.  We knew during my conquest against cancer there would be times when I would be sick and weak and not strong enough to go upstairs.  If I was lucky and never got that bad, I would at the very least have days where I would be tired.  So I would have a bed downstairs where I could take a nap.  We knew for sure though that it would be a few weeks after my surgery before I would be able to climb the stairs to my room, so some of my clothes and belongings were placed in the room for when I came home.  I came home Saturday and that night two friends of mine came over. One who I had just met the week prior, his name was Ty.  Ty was the friend that was there for me the most during the next 1 ½ months before things in his life took a turn and we stopped communicating as much.  We are still friends today, just not as close as what we were when we first met.  Over the next few weeks, I received get well cards from everyone that knew my family and me. What sticks out the most in my memory of this time is receiving package of homemade get well cards from my old high school’s FFA.  During high school I had been involved in FFA for all four years, was secretary once and reporter twice for the chapter, and I was even crowned Sweetheart Swirl queen, at the dance that FFA hosted my senior year.  It meant a lot to me to receive cards from my old chapter telling me that I was in their thoughts and prayers.  It also amused me to see how many times my name was spelled wrong, and what spelling they would use.  November 6, 2009, was my first benefit. It was put on by a my Mom’s employer at a bowling alley.  A lot of people were invited, even more showed up.  My friend Ty drove an hour from where he lived to be there with me.  It was a good thing that he did because not many friends from high school came, or at least not the ones I had expected.  Many coworkers of my parents showed up, many relatives from my dad’s side came, teachers from my high school and all of my brother’s friends ~ I was like a little sister to them. Few friends from high school showed up to my benefit, keep in mind the school I went to was pre-k through senior year.  My best friend that I had known since I was 5, didn’t drive the hour from college to see me and didn’t take the time after the benefit to apologize for not coming.  My friend who called 911 for me in 2005 came and I had only known him since 2003.  Two other friends came and they had only known me for a few years. All of this pains me, because I barely hear from them now.  I only point this out because the word ’cancer’ scares people, it scares them even more when it is being used to talk about someone their own age.  A lot of friends have lost contact with me because what I’m going through scares them; it very well could have been them.  You are going to lose friends through life no matter what, but when you go through hard times, you really find out who are your real friends.  The benefit went wonderfully and the profit made helped cover a lot of our medical costs and bills.

The following week I had scans in Iowa City.  From these scans it was found that I had suspicious looking lymph nodes in my chest by my heart and lungs.  To follow up these scans a biopsy was done of the lymph nodes in the chest to see if it was the same as the cancer that had been in my kidney.  For this biopsy, they went down my throat to get a piece of lymph node.  Around the middle of November, I started on my first chemotherapy drug - Sutent.  Sutent was in pill form and I took it every night for four weeks then I would be off for two weeks.  During the first round, there weren’t any big side effects.  I felt basically fine. Sure I was fatigued but I was used to being tired, so it really wasn’t that bad at first. Then I started having side effects.  The pigment change in my skin wasn’t bad, I didn’t mind at all, but the dry skin and severe sensitivity of my feet bothered me a lot.  Early December they put me on a pill for high blood pressure.  We monitored my blood pressure daily and it had been elevated (I did not mention to my doctors that around this time my friend Ty had stopped talking to me because of the problems in his life and that it was causing a lot of emotional pain on my part.)  In January, sometime during the second round of sutent, I started experiencing pigment changes in my hair, my roots were coming in white and so was the hair everywhere else.  I also started experiencing acid reflex so the prescribed me a medicine for that.  In February and March, I started to be more fatigued and have a lot more bad days than good.  My pain was also increasing steadily, the scans done in February showed that I had some arthritis in my back that could be contributing to this, but other than that everything was stable.  Sometime in April 2010, I was rushed to the E.R by my mom because of a high temperature and vomiting.  I saw my local oncologist a few days later and he decided to take me off of sutent right away.  The toxicity in my body was too high to put me through anymore of this treatment.  A few weeks later in May, I had scans and saw the oncologist in Iowa City.  The scans showed that there was significant growth in the lymph nodes in the chest and that there were lymph nodes in the back of the abdomen also. The oncologist told me not to expect to be around in a few years, that my life span was maybe six months at the most.  He told my mother and me just to continue seeing our local oncologist for now on because there wasn’t anything more that he could do for us that the local oncologist couldn’t.  With that, he told us about some clinical trials going on, handed us information on it and sent us on our way.

Up until this point, I really must not have known how seriously ill I was.  All of this was hitting me hard. At that moment, though I knew I needed people to help me through, I kind of just shut people out because I knew there wasn’t anything that they could say or do to make it better.  I still had hope and faith that God would get me through and everything would be better eventually.  Late May my parents and I traveled to Chicago to find out about a clinical trial. It isn’t anything really note worthy because we waited three hours for the doctor to come in excited about our insurance but as soon as he found out that our insurance wasn’t going to cover any of this he basically dismissed us; saying there really wasn’t anything he could do.  In June my doctor started me on a weekly I.V. treatment of torisel.  During June, I hung out with friends a lot and in late June I went on a trip with my parents to Marshfield, Wisconsin. While on torisel, I had plenty of down days and sadly the car drive to Marshfield wore me out and I was sickly most of the weekend.  In July, Mom and I made a trip down to Indianapolis to see her side of the family.  Most of this trip I was feeling well other than the mosquitoes were very much attracted to my blood because of the chemotherapy.  I had scans not long after getting back and found out that there was growth in my abdomen but the cancer was basically stable in the chest.  Up till now, the nurses always had trouble getting blood from me, my veins are small and move a lot.  In August, I finally had a port placed in my chest to help with the labs and the next I.V. treatment they were planning.  I started Avastin and I was sick a lot.  All I remember from this time is that I did attempt to go to college taking one class every Wednesday night, but because of treatment, I missed more class than what I attended and I withdrew.  In September, I had more scans that showed all around growth.  It was decided that I would take a break from treatment for the rest of the month while we decided what to do next.  During September, my brother Ben got married.  Sadly on this day I was feeling terribly sick and wasn’t able to enjoy the day like I wish I could have.  October 2010 I had my 20th birthday.  I received over 300 birthday cards from friends, family, and people that they knew.  My mom asked everyone she knew to send me a card and asked them to ask others as well because I love receiving cards and I read every single one.  I am still in amazement at the amount of people praying for me.  A lot of those cards said they were sending their prayers and best wishes.  Not long after my birthday, I started afinitor – the last FDA approved drug for kidney cancer.  Everything went well through October.  In November, my dog Buddy who we had since about 2004 started getting sick.  This dog was always close to me, he lay by my bed or in it with me, and since I had gotten sick he had gotten more protective over me.  In December, we had scans that showed that everything was stable and some signs of shrinkage.  This lifted our spirits a lot and we really thought that this was our miracle drug.

In January, I started dating my boyfriend Jeremy. He is an amazing man and since we started talking in the middle of December, he has been there for me no matter what.  He spoils me with his affection and we both love each other so much.  And even though this journey is hard on both of us, he stays by my side.




 In February 2011, I started having trouble with my breathing and my already severe back pain was slowly increasing.  Also in February, Buddy had reached the point where we had to put him down.  This was really hard on all of us and still till today we miss him and probably always will.  The vet said that Buddy had probably had a cancer commonly found in dogs.

In March, I had scans that told me I was having trouble breathing because the afinitor had caused pnuemonitis in my lungs.  They put me on steroids.  While there was growth, it wasn’t enough to be considered growth and so the results were considered stable.  Throughout March, neither the breathing or the pain got better.  By the end of March, I was having severe joint and back pain.  I would wake up in the middle of the night in pain, not being able to walk.  I had many episodes of this.  One so bad that it was an hour before I could even walk again.  When I went to my oncologist, he decided to take me off of the afinitor because of the pain and the breathing problems, hoping that these would clear up in about a month and I would be able to go back on afinitor.  A few weeks later I was also suffering from fluid on my lungs, a cough, and a high temp flu.  I was still waking up at night crying and screaming from pain, and now I’m having these terrible migraines that I had experienced all through high school again.   Through this time my pain medicine was upped several different times and finally it was at a point where it was working.  All that I am going to share about what I was taking is that it was a large amount of narcotics that should have had me sedated but they didn’t.

Scans were finally scheduled because of all of these side effects.  Scans showed extreme growth all over but no new sites of disease.  Lungs were shown to be scared and inflamed and the lymph nodes were pressing in on them.  The lymph nodes in the abdomen are pressing in around the aorta.  My life span at this point is not looking to good.  Since afinitor was the last FDA approved drug for kidney cancer, it’s time now to start grasping for straws basically.  They started me on a traditional I.V. chemotherapy of Gemcitabine used along with doxorubicin which had a 5-10% chance of working.  I would rather try than to have not tried and wondered what might have been---plus all my blood counts were still good.  I am young and have no prior conditions other than cancer.  The first I.V. treatment I received both meds.  I thought this first treatment went well, I was just tired and out of it.  The treatment was on May 6th and by that Sunday, I was admitted to the E.R. for breathing problems and severe pain.  My oncologist said that he hoped it was just an isolated event and that we could continue on with treatment but it was up to me.  I decided that I would not continue with this treatment, having the feeling that I would be back in the hospital the upcoming weekend after the next treatment or after the next one. A few weeks later, May 18th, I started losing my hair just from the one dose I had of doxorubicin.  By May 28th all of my hair had fallen out.  My breathing had continued to get worse and that weekend I went to the ER because I could barely catch my breath, my throat was swelling, and my face was purple. After a few hours I was sent home with an inhaler and the following day my oncologist made a call to get me an oxygen machine for at home and portable oxygen as well.  Even though it was a holiday, the oxygen machine was set up just two hours after he called and I was feeling much better.  Without the oxygen machine, my oxygen levels are around 80% and with it I am around 94%.

This may all sound sad, the fact that I am months away from turning 21, have lost my pretty hair, there aren’t any treatments out there left for me, and that my lungs are so compromised that I have to be on oxygen at home and limit my activities outside of the house but I believe this is only a minor setback. Things will get better, after all, God is the greatest physician we have and my faith is strong.

UPDATE: June 8, 2011

I was in the hospital since sunday night.  I just came home today. I was having bad pain in my chest. The ER doc thought it was a clot so they treated me for it and the pain went away. My oncologist kept me in the hospital to make sure everything was fine. I'm on a different pain med now. I had scans Monday and found out that the cancer has grown more [all possibilities are still exausted, radiation or surgery would just make it worse as it would be too much stress on my body.  I actually saw my doc tear up while telling me this. He doesn't want me to give up] My right lung is the most effected lung. There is nothing visable to explain the blood in the urine but the doctors are worried about the kidney amd cancer progression.  Hospice is now involved.  Basically, no more ER visits.  This makes things easier on my mom.
 
Written by: Aimee N. Dowell
 
Sadly Aimee at the age of 20, graduated, earned her warrior wings on June 14, 2011.  She will be loved and missed by her family, friends and all of us in the Kidney Cancer Warriors support group who grew to know and love Aimee.  She was an inspiration to all of us! KCW sends our condoloscenses to Aimee's mom, Brenda, and the rest of her family and friends.

June 2011: Mickeral Lawing

 A Warrior's Story: The Journey of a Lifetime

When you treat a disease, first treat the mind

From the Philosophy and Discipline of Chen Jen

Drag your thoughts away from your troubles...

by the ears, by the heels, or any other way you can manage it. ~ Mark Twain

Life is a shipwreck but we must not forget to sing in the lifeboats. ~ Voltaire

Prologue:

Recently, while the Princess and I were visiting a relative, I was asked about my activities during the year.  As I hesitated in giving a response, the Princess began listing some of the things that I had been involved with since we had last visited.  her list did not include everything, but it surprised me to look back at all the activities that I had been able to participate in over the year.  The relative had received a copy of a newspaper that contained an article about me from someone that lived in my community and commented that he did not realize that I had faced all the things during this cancer journey that was stated in the article.

My fourteenth year of survivorship is well underway - it promises to have new adventures, opportunities, and without a doubt it will contain some obstacles as well.  While I seldom spend a lot of time recounting the past, perhaps some of the songs that have been sung in the lifeboats will be encouragement for others as they sing and row away from their own shipwrecks.

It is indeed an honor to have an opportunity to share a portion of my journey on the Kidney Cancer Warriors' site:  I am truly impressed with the "family feel" of this blog, of the commitment to "pay it forward" and the acts of "sharing because we care" that is proclaimed and practices in such a wonderful way.  I commend Leigh & Allen and all those involved in bringing their dedication and desire to reach out to those affected by Kidney Cancer in this blog and in all the related social sites that the KCW's are impacting.  Whether by accident or by an intentional visit to these sites, a person who pauses only briefly or who stays for awhile can receive inspiration, hope, encouragement, and strength; no matter what their life situation in life.

In case you have not "met me" previously in some of my rambling tales under the pseudonym of "Mickeral" or in some items that appear in various places from time to time under "Mike (B.) Lawing," please allow me to introduce myself, and bear with me as I share a portion of my Journey.

At the time when most of my high-school classmates are beginning to retie and to lament that they are bored with nothing to do and tend to sit or stand around and talk of "the good-old days," I find myself actively involved with so many projects that I do not have the time to wistfully daydream of the things that were - I am too involved with the things that are now; and I am excited by the prospects of things that will be.  Please understand that I see nothing wrong in a person looking back at the past, or even thinking of days gone by a great deal of the time if that is what they wish to do; it is just something I don't do a lot of.

My wife (The Princess) and I live in Western North Caroline, USA midway between Charlotte and Asheville.  I grew up in the country in which we reside; and I absolutely could not wait till I was old enough to leave it - never to return except to visit my parents and perhaps a few relatives. My basic philosophy of life was that it was a total shipwreck and that nothing good was in store for me.  If I sang at all in the lifeboats the tunes would be similar to "Nobody likes me: Everybody Hates me, Going down the garden eatin' worms." My songs and philosophy were much distorted and out of focus; for in reality, I was loved by my family and was a "dear little boy" to the neighbors and acquaintances in Small-town NC in the 1950's and early 60's.  Still, if anything bad was going to happen, it would happen to me - I was convinced of that.

As a child, I was given a present one year for Christmas by an elderly woman (everyone called her "Granny") who thought of me at that "dear little boy."  I was excited at first since the painstakingly-wrapped package appeared to be large enough for a cap pistol or something neat; - much to my dismay, the gift turned out to be a little Bible, complete with a zippered black leather cover with a gold cross hanging from the zipper.  To make matters worse, the Bible had a name imprinted on gold on the cover - Granny had special ordered this Bible just for me from a distant bookseller.  In her effort to give me a perfect gift she attempted to have my name "Michael (which I hated) Lawing" inscribed on the cover - as a final blow to what little pride and self-esteem I had, her attempted spelling of my name yielded the word "Mickeral."  With much shame and embarrassment, I had to carry that Bible to church for a number of years.

The shame and embarrassment of the "Mickeral Bible" was an internal struggle for me; one of many which dotted my young life.  Those struggles shaped my thinking and emotions into a self-limiting concept of usually expecting to fail and discounting the talents and abilities that I possessed.  Miraculously, I wound up in a lifeboat instead of sinking in the shipwreck of life; perhaps I sang defeated songs, but at least I was in the lifeboat.  At this point it is appropriate to point out that the "lifeboat" that I wound up in is fashioned with a lot of the tenets of the Christian Faith.  I have included some of those for they are a part of my journey; elements of faith empowered me to allow a transformation of my attitude and my outlook of life to take place - had that not happened, I firmly believe I would have succumbed to cancer long ago.

One day I realized that the fruits and products of negative, "stinking thinking" were producing rotten results - the glimpses of opportunity and possibilities that had sometimes presented themselves to me were soon overwhelmed by the "failure syndrome" that had been so firmly entrenched in my mind.  The realization that I had to overcome those negative patterns became so real and imperative that I started immediately to dismantle the thought process that had dominated my thinking for years.  Soon after I began that process of dismantling, I found the "Mickeral Bible" and picked it up for the first time in a long while.  There on one of the first pages of the Bible that had been such a source of consternation for me was a verse of scripture in Granny's scrawled hand that she stated was her prayer for my life: "Study to shew thyself approved unto God, a workman that need the not to be ashamed, rightly dividing the word of truth."  The verse from II Timothy 3 (KJV) was something that I had not been doing (or even attempting to do) most of the time since Granny had painstakingly written that dedication to me some eighteen years earlier.  Any statement that has truth in it can be divided correctly or incorrectly - it was a revelation to me that truth divided incorrectly lacked power and strength - while it indeed may be a rainy day - an improper division dwells on gloom and despair, while a correctly divided observation of a rainy day sees life-giving rain, the refreshing to a parched earth, the growth that will come, and many other positive aspects of a rainy day.

Some 24 years prior to being diagnosed with kidney cancer, a key component to my survival began:  I unknowingly began a practice of Chen Jen: When you treat a disease, first treat the mind.  While I later discovered that Chen Jen is a Buddhist or Taoist term which is translated to mean various things including True Person, my "treatment" of the mind was accomplished by learning and accepting truths that were contained (and long ignored) in the Mickeral Bible.  Not long after reading in Proverbs 23 For as he [a man] thinketh in his heart, so is he.  I ran across a book by James Allen As A Man Thinketh that deepened my realization that my thoughts in the midst of a crises or in any situation could help to determine the outcome.  I did not become a "religious fanatic," thumping everyone with Bible Verses; but I internalized the powerful forces of positive thinking from the Gospels as well as other sources reinforcing the revelation that while so many things were literally beyond my control, my thoughts were largely controllable by me.

What came as a revelation to me proved to be a revolutionary event in the lives of others as well.  Over the next decade I had the opportunity to develop and implement a "behavior modification program" that met with some measure of success in a local state prison unit.  I also wrote and narrated a radio series entitled "The Next Sixty Seconds can Change Your Life" for a friend of mine who owned a local radio station.  My involvement in those projects deepened my understanding of how much our thought process affects so many factors in our lives.

Life may be a shipwreck as Voltaire observed - but Mark Twain's edict to "Drag your thoughts away from your troubles..." puts us in a position to "sing in the lifeboats," to gather our wits about us and decide to stay put or to head for the nearest outpost of civilization.

How many of us have been faced with the following choice?  Do I remain where I am and hope for the best, that rescue will come to me: or do I head for a place of refuge?  Our choices may be limited,, or they may be many; they may involve a few (or a lot of) unknowns.  The voyage may be clearly defined or it may be vague with the prospect of treacherous elements.  No matter what our situation - if we learn to develop and strengthen our Chen Jen - our True Person - we are more able to deal with the shipwrecks; we are more able to drag ourselves away from focusing on the trouble we are in and to focus on finding solutions.  If we spend our time looking at the problem, contemplating the shipwreck and the loss we have suffered, it is impossibly difficult to row away to a safe harbor or to figure out an action plan as we await rescue.

In the journey of survivorship, there have been many ingredients that have allowed to me to reach the point that I now occupy.  I am listing a few of many, and I am not necessarily listing them in the order of importance that they have been to me.  Each of us in a survivorship mode has to prioritize our own list of ingredients.  For me, my medical team, my wife and family, my friends, God's mercy and grace, opportunities to be an advocate, and the years of throwing out the negative thoughts and replacing them with thoughts to build up the True Person have been invaluable in coping with the challenges and adversities of a diagnosis of cancer and the life that follows.

Mark Twain and his stories of Tom Sawyer and Huck Finn captured my imagination as a boy.  Somehow I missed the great nuggets of wisdom that he frequently dispensed such as his quote "Drag your thoughts away from your troubles..." that appears at the beginning of this story.  How can a person possibly drag their thoughts away from the diagnosis of cancer; of the uncertainties that lie beyond that shipwreck - how can one manage to do what Twain suggests?  After all, despite the constant developments and evolving "best practices" in cancer diagnosis and treatment, there are those who will not survive.

Kidney Cancer, particularly in the United States has benefited from many innovative therapies receiving approval and coming into widespread usage.  As the "learning curve" increases with these medicines, even more survivors should enjoy longer survival times and a better quality of life.  Twain once gleefully remarked to an audience not long after an article about his untimely death appeared in a newspaper that "The rumors of my death have been greatly exaggerated."  It may be appropriate at this point to add a statement by Dr. Norman Cousins:  "Don't deny the diagnosis, Try to defy the outcome."

When a diagnosis of cancer comes, the thoughts that immediately follow that diagnosis often focus on an outcome of death.  Certainly cancer is a killer; but to surrender after the diagnosis, to accept the rumor as true without defiance denies the ability of the individual to fully muster their mechanisms of defense.  I remember the diagnosis very well.  Days of intense pain such as I had never experienced before.  A trip to the emergency room for what we presumed was kidney stones (which I had never had before); a phone call that something had been found; scrambling to go to another doctor; a trip to a hospital on a cold rainy Friday in November; tests, waiting, more tests, waiting in a crowded waiting room; and a doctor kneeling beside the Princess and I giving us preliminary test results that instantaneously changed our lives forever.  Words familiar and unfamiliar blurred together.  Huge mass, carcinoma of the kidney, encapsulated, nephrectomy - suddenly these phrases that attempted to convey a serious condition became unintelligible as my brain turned to mush in its inability to grasp the finer points of the conversation.  I had interpreted enough to understand that I was in a situation that was beyond I had ever experienced; that the safe and secure ship of life in which I had been riding had struck a reef that had ripping gaping holes in its sides and had begun to sink.  It was time for the lifeboats.

Despite the crowded condition of the hospital that late Friday afternoon before Thanksgiving 1997, the doctor found a bed for me in the corner of the emergency room.  Privacy curtains were drawn around the bed as if the woven cotton panels could shield the rest of the world from my diagnosis.  We were waiting to have more tests as if the doctors were waiting on a second opinion of their evaluation.  It was almost if they did not want to admit to themselves the size and severity of the mass and the situation I was in.  The Princess, ever by my side, sat stunned, her world crumbling and devastated as much as mine, enduring a pain and discomfort far different from mine but every bit as intense, held my hand tenderly and smiled at me.  Words came from both of our lips offering comfort, hope, resolve, and love; but the words blurred into the grayness of the rainy cold afternoon.

As I lay on that gurney, in a very unfamiliar place, my True Person began to assert itself.  It was as if it took control of the situation, and it began to put things into a perspective far beyond the events of the afternoon.  I turned to the Princess and spoke from the heart, telling her of the love that I had for her, and then I changed the subject.  I spoke of the recent diagnosis.  Basically, I said that I was glad that this had happened to me instead of to a person that did not have Faith in God or the ability to look at the situation in a positive light.  (In my mind, I had accepted the diagnosis as true; I had kidney cancer, a huge tumor completely enveloping my right kidney, and it would have to be removed.  I also knew at the time that there was great risk, that while it was severe and extensive that there could be even more problems that had not been detected.  I knew that there was a possibility that I would not survive the surgery or have a long life afterwards.  Those were things that I no longer had to wrestle with.)  My acceptance of those facts did not mean that I had "given in" or "given up" to the cancer, it meant that I could devote my energies and actions to the challenges that lay beyond the events that would play out in the next week as tests, consultations, a Thanksgiving get-together, and surgery the day after Thanksgiving would take place.

I had already moved past the diagnosis on that hospital gurney to the events that would happen after surgery.  My Chen Jen had placed me in the lifeboat; we were rowing away from the shipwreck of a cancer diagnosis to an island of great beauty and peace called Survivorship.  And, as I rowed, I sang songs of victory and hope.  A week later, on another Friday, on another gurney, I was being wheeled down a long corridor to the operating room.  As the orderly pushed me toward an unknown outcome, a warming sensation seemed to cover me with a great peace; I knew that whatever the results of the surgery that "everything would be okay."  In that instant I realized that whether I lived or died in that operating room, I would be alright.  Perhaps I didn't sing out loud in my lifeboat (really a hospital gurney), but my Chen Jen was in full song.

that feeling of "alright" has remained with me throughout the ensuing years of this journey; it has rarely been subdued by test results, side effects, or the setbacks that we have encountered along the way.  As an example, almost three years after my initial surgery, I felt a swelling on the side of my neck which turned out to be a lymph node that was removed and had a concentration of cancer cells inside.  The results were discussed and an appointment was made with my urologist for a few days later.  On our way home from receiving the results from our surgeon, my wife commented that if we had to have a lymph node removed every year in order to survive, we could do that.  Both of us laughed about that comment, for it was I that would be having the surgeries.  At the time we knew very little about renal cell carcinoma; for we had found sparse information on the subject.  My urologist was fairly knowledgeable of the disease from the standpoint of a practitioner in a small community, and he had committed earlier to refer me to a specialist if we ever had metastatic spread.  It was time to point the lifeboat in a different direction; toward a specialist who was a surgeon, an oncologist, and an immunologist who dealt with kidney cancer and melanoma patients almost exclusively.

That was in October 2000.  In June 2001, we would find another lymph node that contained metastatic disease; this one deep in the abdominal cavity in a location not easily "resectable" - which is doctorspeak for a tough operation with risks which may have unexpected outcomes.  That enlarged lymph node is now back to normal size, presumably cancer-free or with cancer cells which are no longer viable or thriving.  The journey from the June 2001 scan results to the present has been a challenging one - with numerous changes in directions, setbacks, and successes.  In that decade, I have been blessed by being with a medical team that has been on the cutting edge of the treatment and follow-up of kidney cancer.  I have been able to drag my thoughts away from my personal battle with kidney cancer to use those insights and the knowledge gained from my medical team and powerful organizations such as Kidney Cancer Association to assist others in their journey.

I have not found any hard and fast answers to pass along to anyone dealing with kidney or any other cancer; for what has occurred in my situation in only "anecdotal," meaning that it may not work for anyone else.

With that disclaimer, I encourage each individual to learn to communicate with their Chen Jen.  I would encourage survivors and caregivers as well as others who are involved in this cancer journey to adopt some version of the "Serenity Prayer," for while that prayer is often associated with Alcoholics and Narcotics Anonymous, it is a powerful affirmation that can strengthen and encourage everyone who utters those words.  I say that it can, for the person who says that prayer has to act on it as well as to say it.

I will at this point that while I believe in miracles, I cannot point my lifeboat toward them.  Miracles, whether personal, medical, or Divine "happen" as opposed to being "conjured up" by some certain action.  A medical "breakthrough" that is indeed miraculous comes quite often as the result of tireless research.  If a "miracle discovery" occurs when a researcher makes a mistake in a process they are following, would that "discovery" have happened if the researcher were sleeping on a coach in the break room instead of doing research?  I cannot begin to list all the things that have occurred to me in this journey that can correctly be termed as miraculous; but I am deeply appreciative of each of them.

my time with you is rapidly drawing to a close.  Perhaps I did not include enough details of medical events in this story to satisfy you, or perhaps I included too much.  I have attempted to balance the medical with the mental; the scientific with the soul and spirit; and the diagnosis with the dealing of it.

No matter where you are in your journey of life - whether you are in perfect health or afflicted with a condition that is advanced and serious - I would offer my encouragement to you to communicate with yourself, as well as your circle of family and friends.  I would encourage you to allow yourself the great pleasure to sing, to laugh, to find joy and sunshine in spite of whatever adverse situations you may be facing.

I would like to leave you with a thought by Orison Swett Marden which captures the essence of what I have been fortunate enough to do for fourteen years.  It is something that I plan on continuing to do; If you have not been practicing this completely me dear friend, I invite you to join me.

There is only one thing for us to do, and that is to do our level best right where we are every day of our lives; To use our best judgment, and then to trust the rest to that Power which holds the forces of the universe in His hands.

Thank you for allowing me to share these thoughts with you.

Warmest Wishes - Best of Success

Mickeral - Mike Lawing

(See PDF for Mickeral's entire story with photos)


A Warrior's Story: the journey of a lifetime -