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 -

May 2011: Sue Guenther

Featured & Written By: Sue Guenther

The LORD is my light and my salvation—

whom shall I fear?

The LORD is the stronghold of my life—

of whom shall I be afraid?

When the wicked advance against me

to devour[a] me,

it is my enemies and my foes

who will stumble and fall.

Though an army besiege me,

my heart will not fear;

though war break out against me,

even then I will be confident.

Psalm 27: 1-3

Stumbling and Falling

Did you ever think you could be praising God for stumbling and falling?

I know that sounds ridiculous, but I have been doing just that since early February when I returned home from weeks in three hospitals. I found out I had a brain lesion that was bleeding into the pons area of the brain. I also found out just how serious a situation that actually was. Apparently, if one is to have brain metastasis from kidney cancer, the pons is the last place one would want it to take up residence (is there really a good place in the brain for cancer, she asks innocently???).

So there it was: added to the cancer mets in the lungs, the lymph glands, the mediastinum, and the anterior acetabulum hip bone...now there was cancer in the brain.

I kinda like my brain. I relied heavily on it throughout my life. Perhaps too heavily, I now realize. You see, I relied more on my brain, my wit, my wisdom, than I did on God.

Cancer taught me to rely on God when I was told I would most likely die on the table during my first surgery (kidney cancer: kidney removal) almost seven years ago. Chalk up one for a little less brain reliance and more God dependence.

Cancer taught me to rely on God when I was diagnosed with two more cancers: thyroid and sarcoma. Chalk up two and three opportunities to rely less on my brain and depend more on God.

And then came the “biggie.” Cancer in the brain. Cancer in the part of the brain that dictates most of what makes us human, what makes us function.

Apparently, the brain lesion had been bleeding for about three months. As is typical when relying on brain wisdom rather than God truth, I plowed through two of those months ignoring my symptoms. I even mentioned to my oncologist that it “was as if a switch had gone off in my brain.” Of course, when he suggested an MRI, I said no.

That’s what you get when you rely on your brain: FEAR-based decisions.

When I ended up in three hospitals after a month of vomiting whenever I lifted my head off the pillow...after a month of not being able to brush my teeth because I couldn’t keep anything in my mouth...after a month of not eating one morsel of food or water...it finally became obvious even to me...

This stubborn, fearful, controlling person was alive ONLY because of the grace and mercy of God.

He had protected me, covered me with His love, despite-or maybe because of-my stupidity.

Chalk up number four in the Opportunity to Know the Truth department!

I felt so loved, so protected.

So grateful.

God had kept me alive for a purpose, for a divine reason that is still almost completely unknown to me.

Except for this: To share with you the significance of praising God for stumbling and falling.

When I returned home from the hospitals, I was very weak from weeks of inactivity, from very limited nutrition, and from my body fighting all the invader cells that have taken up residence. A friend visited me and told me about watching a television minister she loves and respects. This minister read Psalm 27:2 and declared she had had revelation during meditation that this verse was a direct reference to cancer.

“When the wicked advance against me to devour me, it is my enemies and my foes who will stumble and fall.”

When cancer cells would try to increase in order to devour my healthy body tissue, they would HAVE to stumble and fall!

This was God’s word to us. This was God’s promise to us. This was God’s purpose for us...for us to be more than conquerors...for us to have the strength to do all things through Him.

I spent much of my life arguing, with people, with ideas, with my own brain-created thoughts.

I DON’T argue with God.

So, I started praising God.

For protecting me.

For loving me.

For His Word.

And His Word said that the cancer cells in my body were stumbling and falling.

And so I praise Him, for His Word, for His Truth.

And for the cancer cells stumbling and falling.

What is attacking you? Is it a thought wrought with fear? Is it pain in your body or your heart? Is it illness? Is it lack?

Whatever it may be, stop worrying and start praising. Praise with confidence that what God has declared, He is able to deliver. Praise with faith that in God’s perfect timing there will be tangible results.

Praise God for stumbling and falling. Whenever a fearful thought takes control of your brain, praise God that the (insert fearful thought here) is stumbling and falling.

And then wait...in Truth...in Peace...in Love...in Confidence...in Hopeful Expectation...in God.

..........................

By the way, I had scans the end of March. After three months of treatment that did not work (this treatment ended in December)... after another three months of no treatment because I needed to rebuild my body after the brain bleed...

The radiology report stated there was SIGNIFICANT REDUCTION in all mets!!

The oncologist was confused.

He is a man of science.

I am blessed.

I am a child of God.


Sue is no longer with us here on earth but she won her battle with kidney cancer by the way she lived her life and so willingly shared her journey with the kidney cancer community.  She was an inspiration to us all.  She will live on in the hearts of those who knew and loved her.

April 2011: Jay Hyman

Featured and Written By:
Jay Hyman

My name is Jay Hyman, AKA Itsdaplumber on the KCA message board.

I wanted to tell people about my experiences having kidney cancer and the things that have helped me through the last six years.

In early February 2005, I experienced one small episode of a bloody urine that I mistook for a urinary tract infection. Being that it was only a one time thing, I didn't think anything of it.  At the end of February, I was out to eat with my family and another episode of blood in my urine made me realize that something serious was going on. I called a urologist who agreed to see me. Upon performing several tests, I was told that there was a large mass on my left kidney. This doctor had no compassion at all and shuffled us out of the room through a back door so we wouldn't upset the other patients in the waiting room. They need to make a course in patient/ doctor relations a requirement to get your degree. Anyway, a mass was detected in my lung and I was referred to Fox Chase Cancer Center in Montgomery County, PA.

Dr. Uzzo saw me right away and two days later I had a nephrectomy of my left kidney. Two months later, I was put on Sutent through a clinical study.  I have been on Sutent for 53 cycles and am am currently NED (no evidence of disease). I made it through this process with the help of God, my family and the power of positive thinking. 

It is so important that you keep a positive attitude because anything is possible. I own a plumbing company in Philadelphia, and am enjoying a good, healthy life. I wish I could meet the team at Phizer that created Sutent to thank them personally for saving my life. I'll continue offering support to anyone that needs positive energy in their lives to help them get through their struggles with RCC. 

Jay Hyman

April 2011: Allison Rodgers

Featured and Written By:
Allison Rodgers

Me before kidney cancer

Me and my daughter after surgery and Sutent

I live in Cincinnati, Ohio as I have most of my life. I have only been married once and have one amazing daughter, who is now 30 years old and working on her Master's Degree in Social Work. I have attached a before kidney cancer/Sutent picture and an after surgery/Sutent picture. In the bottom picture, I had been off Sutent I believe about 6 weeks or more.

My kidney cancer journey started on June 20th 2009 at the age of 50. I was a runner and did a really hot race down in TN, called the, "RC Cola Moon Pie 10 Miler." It was a miserable humid day, a hilly course, and I hadn't been feeling well for a while: fatigue, weight loss, and back pain. I attributed most of this to work and didn't worry about it. So, I did the race. It was 100 degrees when I crossed the finish line in the morning! I felt really bad after the race but hung out with my friends.

I had driven a friend and I had to drive home since she didn't know how to drive a stick shift. I was so sick I was afraid I was going to pass out while driving. I couldn't really eat or drink anything either. I got home late that night around 8 p.m. and went to bed. I woke up around 1 a.m. with bad heart palpitations and really feeling bad. So, I went to the ER and they said I was severely dehydrated (took five bags of fluid). A doctor decided I might have some kind of colitis that runners sometimes get so he ordered a CT scan. Two days later, I have a Urologist and an Oncologist in my hospital room and they said that I had a cancerous tumor on my right kidney. I was in shock and disbelief as I take care of myself. I eat healthy, mostly organic/vegetarian and workout. How can this be? I was only 50 and went to the doctor like once a year for a sinus infection. They then did a chest CT scan and brain MRI since RCC tends to go to either place. Both came back clear thankfully. I then had the difficult job of telling my one and only daughter about the cancer. It was very hard as we are very close, best friends. As expected, she did not take it well. 

The doctor scheduled surgery quickly and on July 2, 2009, I had a radical right nephrectomy with partial adrenal gland removal. Surgery was very painful and I was in the hospital about 8 days. I lost a lot of weight and was very scared. The Urologist said though to not worry, he got it all out. No problem. 

In August, my Urologist had me setup an appointment with the Oncologist. He waltzed in smiling with my pathology report and then proceeded to tell me that I was a stage 3a, grade 2 RCC and that my chance of recurrence was high. He said I needed to see his clinical trial nurse and walked out. I freaked out at about this time and had a panic attack again (my 1st one was at hospital when they told me it was cancerous). 

I went home and prayed, talked to family members. I didn't like the idea of being a guinea pig in a trial. I decided to get a second opinion, which led to a third opinion at OSU - James Cancer Center in Columbus, OH. I really trusted the third doctor and liked him, but couldn't see myself driving to Columbus constantly as I live in Cincinnati. So, he said the second doctor I had seen was good and I called to make my first oncology appointment.

The first week with this doctor was hell as they tried to run every test imaginable to see if I could do the Nexavar/Sutent study. I was there every day for about 8 hours each day. Blood taken, MRI's, ct scans, MUGA scans, mammogram (which showed a lump in my breast, thankfully turned out to be a cyst), etc. My creatinine levels were high so they took blood each day, hydrated me on IV fluids and then took blood again to see if they could do scans with contrast. It was a nerve-wracking week.

So, in the meantime, I felt like I had a nervous breakdown and had to be hospitalized for my nerves. I was put on an antidepressant, an anti-anxiety drug and a sleeping pill, which helped tremendously! I could barely eat or sleep and couldn't afford to lose anymore weight. (I weighed 99 lbs. after surgery).

I finally started the trial in September 2009. I made it five cycles, all of which were really hard on me. I got the standard mouth sores, hand/foot sores, high blood pressure, hair turned white then started falling out. I turned yellow the first cycle so I knew I was on Sutent. I had read the side effects and had opened a capsule and saw that it is orange/yellow powder inside. When they took me off, my platelets were down to 58k, my white blood cells and red blood cells were all low, and I was anemic, but NED!

I was glad to be off Sutent, but scared to be off of it all at the same time. But, life does go on. I started seeing a great Nephrologist too.  She has helped a great deal as she gives me advice about supplements and my diet to protect my lone kidney. She actually listens to me and spends time with me.

I use prayer and meditation to help me when I feel stressed, and I still take an antidepressant. I have a huge support system with my family, friends, and church community. People came over very often bringing food and prayers. I am truly blessed and all those months on the couch sick made me realize how blessed and fortunate I am. I took life and people for granted before. I no longer do that. Having cancer strengthened my faith and has made me closer to God. I used to be very negative and now have a more positive attitude. It took cancer for God to get my attention and I am thankful to have a second chance. I know that no matter what happens with my health, that I am never alone. God is with me and I have my support group.

I live each day as it comes now. I try not to think of the future at all. My scans/labs are now every 4.5 months instead of every 3 months because my Nephrologist is worried about the function of my one kidney.  I know all will be well though. I have changed my eating habits and stopped all my supplements that were probably affecting my numbers. My last scans in October 2010 showed a nodule in my left lung, but the Oncologist thinks it is just an infection so I did two rounds of antibiotics. I am praying that it will be gone on March 15th when I have my scans again (ab/pelvis/chest).  If it's still there, I will have to have a biopsy. I do get nervous when the scans are due, but I am staying positive!!

I am 52 now and looking forward to my two year "surga-versary" as I call it. I still have fatigue and some other slight side affects, but am progressing. The more time that passes, the better I know I will feel. I am really grateful for Facebook, for the Kidney Cancer Warriors and the RCC group as well. It is such a great support system!

The day after surgery with my sister on the left and my daughter on the right

Moon Pie Race Tenn 2009

The race where I got dehydrated, followed by a hospital visit and my kidney cancer diagnosis

 

My daughter Melinda and her fiance Mark

3 months after surgery and before Sutent was started

April 2011: Craig Frey

Featured and Written By:  Craig Frey

Craig and Cathy Frey

February 2011

Hello….My name is Craig Frey. I was born in 1950, and raised in Hopewell, Virginia. I was raised in the shadow of the Allied Chemical Plant where my father was Superintendent of Maintenance. In 1972, I moved to Newport News, Virginia to attend College where I met my wife and eventually retired from the Newport News Department of Social Services. I have two wonderful children, a son and daughter, and 5 wonderful grandchildren with a 6th on his way in May 2011.

My story begins on Christmas Eve 2008. My son had come home to spend Christmas with us, and my daughter and her husband were in Tennessee with his parents. The weather was mild that day and my wife and son had gone to finish up some last minute shopping for Christmas. I stayed home and did some “early spring” clean up in the yard while they were gone. My wife and I (and son when he is home) sing in the St. Andrew’s Episcopal Church Choir and always look forward to singing at the 10:30 pm concert before the candlelight service that brings in Christmas day at midnight. Singing in the Choir on Christmas Eve and on Easter Day are the two services in the Church I enjoy most.

Around 9:00 pm I decided to shower and get cleaned up from the yard work earlier and in preparation to go to Church. Once in the bathroom and ready for my shower, I urinated and saw nothing but blood and blood clots. It scared me a little; but I am not one to let something like this get to me. I wondered what was going on and decided to dismiss it until later. We had rehearsed for months to get ready for the concert and I wasn’t going to miss something I had looked forward to for so long. I felt fine and decided to just tuck it away in the back of my mind and deal with it later. I knew if I told my wife I would end up in the Emergency Room and miss singing in the Christmas Eve Service, plus it would probably ruin Christmas for everyone. I realized it was probably a major health problem. So…I showered, put on my suit, and off to Church we went. I thoroughly enjoyed the service; but wasn’t my jovial self as some people commented to me later. My only concern was that I would develop some sort of leak and have blood on my white robe as we stood on the outer perimeter of the congregation singing “Silent Night” with a candle in my hand; however, all went well. MERRY CHRISTMAS!

We got home around 12:30 am, watched a little of the Christmas service from the Vatican and I thought on my dilemma. I decided not to say anything that late at night and went to sleep hoping it would be gone in the morning. In the morning I still had blood in my urine; but decided to keep quiet as a trip to the ER would ruin Christmas Day for the family. I still felt fine with no symptoms except the blood. When everyone was up we exchanged gifts and had a great Christmas breakfast together. As both my Mother and my Mother-in-law were in Nursing Homes, the afternoon faire was to make Christmas visits to both of them and give them their gifts. My wife and I drove to Smithfield (about 20 minutes from Newport News) to visit my Mother first. We had a nice visit and while there I had to urinate. A visit to the restroom and blood again! I started feeling a little nauseous at that point. On the way home I told my wife I was really tired from the previous night and wanted to stay at home while she visited her Mother. I felt really bad because she had gone with me but I was afraid I was going a little downhill at this point. It was fine with my wife and I told her to tell her mother that I would come to see her later in the day. I was still denying I had a problem and that it would go away.

My wife left and I started feeling worse almost before she got to the end of the street. I decided that it was time to do something about the situation I was in. I tried to call her, but her cell phone rang on the dining room table. I had no choice but to wait until she came back home. I turned on the computer and typed my symptoms into a search engine on the Internet. After reading, my research had convinced me that I had kidney stones. As I had never had kidney stones before I had no Idea of what to expect as far as symptoms and pain. As soon as my wife got home I told her what had been happening with me and she told me to get into the car and we were going to the ER. We decided on Port Warwick ER (part of the Sentara Hospital system), a full scale ER without a hospital attached. Previous experience had told me it was quick, efficient and the staff had been nice. After the check in, preliminaries, and vitals, a young ER doctor came in to talk with me. I told him I thought I had kidney stones and he gave me a cup for a urine sample. I returned with what looked like thick cranberry juice. He ordered a CT scan and off I went to the hoop. After returning to the examining room, the young doctor came in with a look on his face that lead me to believe his entire family had just been lost in a car accident. He told me I had a large mass growing on my left kidney and that he was 99% sure it was cancer; my left kidney would have to be removed. It took my breath away for several moments, and I looked over at my wife who also seemed to have stopped breathing. When I looked back at the doctor he had that same doomed look on his face….I asked him if he was alright? He then asked me if I had understood what he had said, I acknowledged that I had understood but the last time I checked you could still live with one kidney! He agreed that that was true. By now my wife had come around and she asked him if he was alright. I guess the poor young doctor just didn’t expect the response he got from me. Of course I didn’t question him, but my wife immediately started to deny that it was cancer and questioned what made him so sure it was cancer. He was sure! 

I was transported to Hampton Sentara Careplex Hospital and admitted. I met my surgeon, Dr. Anthony Sibley (a wonderful man who saved my life and felt like a part of our family) who had to find another doctor to assist with the operation as his regular doctor was out of town for Christmas holiday. Eventually the surgery was scheduled for New Years Eve. During my time in the hospital and conversations with Dr. Sibley it seemed that the goal and most important thing was to remove the kidney in its sack intact so that no cells from the cancer went into other parts of my body. Dr. Sibley told us that Renal Cell Cancer is slow growing (that made us feel better about having to wait to have the surgery) and that the tumor in my kidney had probably been growing there for seven or eight years. During my week wait for the surgery I had to be catheterized, as clots would not allow the urine to pass freely. This was the only “pain” symptom I experienced….but boy was it a terrible thing until the catheter was in place along with bags of water that flushed out my bladder.

On New Year’s Eve the time had come for the surgery. Rhonda, our fairly new Assistant Priest showed up just in time as they were getting ready to wheel me down the hall to the OR. She asked if I wanted communion or healing…..I told her “heal me you fool!” We laughed and she prayed over me putting the healing oil on my forehead as I was rolled down the hall. Shortly after that all was a quick blur until I woke up in Intensive Care with lots of IVs and tubes and my dear Wife beside me. I didn’t know it at the time; but during the surgery the OR waiting room was filled with friends and family all praying for me, as well as many others who were not there. I am sure their prayers are why I am here today and doing so well. After a night in the Intensive Care Unit I was sent back to my room to recover. Dr. Sibley told me the surgery was a success and he had been able to remove my kidney, my adrenal gland and the sack intact, there was no sign of cancer cells on the margins. My kidney had been 5 ½ pounds and the size of a football! I don’t think I had heard him say this before; but my right kidney also had cancer, and I would have to have surgery to remove the cancer from it. The cancer was described like a teardrop hanging from my kidney. I would have to have laproscopic cryoablation; three small incisions and freeze the cancer cells. Now something else to worry about and to look forward to! This would have to wait until I healed from the first surgery.

When questioning the doctors about where the cancer came from, once they learned I was raised in Hopewell, VA, they almost all agree that it originated there. I have also been told it could have come from my mother (who never had cancer) when I was forming and could have been a gene that has been waiting to get started. Either way, it doesn’t much matter where it comes from; once you have it you have to live with it. I don’t spend time trying to figure out where or why I have cancer. I have better things to do with my time and my life than to worry about cancer. I also don’t let it get to me, life is too short as it is, and I am stronger than it is. I don’t like having cancer, I don’t like to be called a survivor, and I really don’t want to know much more about it than I already do. I just keep on getting on with life as well as I can. I am fortunate to have as little of a problem as I do and am thankful for research and drugs that keep me going. I work a part time retirement job, teach Yoga several nights every week, and raise my beagle puppy who is a hand full. I have a great wife, great children and lots of grandchildren to keep me busy and worried about. I have recognized that my having RCC is much harder on my wife than it has been on me. She worries about me all the time and tries to do everything she can to keep me healthy and happy. I am glad I have the cancer and not her. She is my “Bull Dog” when we go to the doctors.

In March 2009, I went to Sentara Hospital in Norfolk, VA, where Dr. Michael Fabrizio (Eastern Virginia Medical School) performed the laparoscopic cryoablation on an outpatient basis. I spent one night in the hospital and home the next morning. All went well and he told me he had frozen the “B-Jesus” out of the cancer cells, I was now cancer free! Once home I discovered that the doctor’s assistant had failed to put her drug number on the prescription for pain. They would not fill the prescription without the number and we would have to go back to Norfolk to get it since it was a narcotic drug. Since it meant a trip back to Norfolk, we recovered without the drugs!

Next step, an appointment with the Oncologist. I didn’t even know what an Oncologist was until then. You learn lots of new things and terms when you have cancer! My wife and I met with a doctor without much of a personality who didn’t answer many of our questions. Both he and Dr. Fabrizio had hinted on getting me into a drug trial for some drug named Sutent (however they sort of whispered it so quiet and fast that my poor wife was unable to write it down) but didn’t go into enough detail to really understand what this was all about. I thought I was cancer free….why was I seeing a cancer doctor and why were doctors talking about putting me on a drug? I was told that I would have CT scans every three months as due to my “young age” he was going to pursue the cancer very aggressively. So, in June I had a CT scan and a follow up appointment. When I met with “Dr. Personality” he informed me that he was so very disappointed, that the CT scan showed I had two tumors on my spine. He was disappointed! How about me? I felt like I had let him down….messed up his statistics or something! He also told me that if I ever was sick or unable to take fluids or urinate that his office was my home and I should come in immediately! I was then immediately referred to Sentara Careplex in Hampton to have 15 radiation treatments on the two tumors on my spine. I met with a really nice young doctor, Dr. Michael Miller, who told me he would “shape his beams” based on my CT scan and I would begin having radiation treatments every day for the next 15 days (except Saturday and Sunday). Amazing how it seems so important except on weekends!

Sometime during all of this process “Dr. Personality” decided that Sutent was the drug for me and arranged for me to get a drug that costs approximately $8000 every time it is filled. Thank you God for my health insurance! My co-pay was only $30 every time I had it filled. 50 mg tablets, one every day for 28 days and then 14 days off of the drug to rest. Don’t eat grapefruit or drink grapefruit juice while taking this drug……NO PROBLEM! I don’t like either! After a day of kayaking at a friend’s house my wife and I were offered a cold Fresca, I didn’t even know they still made Fresca. Boy did it hit the spot, I told my wife on the way home to pick some up the next time she was at the store. Meanwhile, I was experiencing my first side effects from the Sutent, quick trips to the bathroom, sensitivity in my hands and feet, and a very sore mouth….even ketchup burned when I ate it. After about a month I read the label on the Fresca can….CONCENTRATED GRAPEFRUIT JUICE! No wonder I couldn’t stay out of the bathroom.

At the end of 15 radiation treatments my CT report said that one tumor had shrunk to the point where they couldn’t see it anymore. The other one had shrunk considerably. Since they had described the sizes of the tumors in centimeters instead of inches I never really understood their size, except one is now almost gone and the other is somewhere the size of 1 inch or less. I have been told that I can’t have any more radiation and I can’t have surgery to remove them...so I am stuck with them…such is life!

After the radiation treatments and during the first course of Sutent, I develop flu like symptoms, uncontrollable chills, fever, and generally feeling lousy all over. My wife tells me to go to the doctor, “Dr. Personality”, since he told me his office was my home if I was ever sick. I know they won’t give antibiotics anymore and I know it would be a waste of time. I stick it out for several days planning on getting better. I don’t get better and I finally give into my wife and go to “my home” to see the doctor. He isn’t in and I see another Oncologist who evaluates me and chews me out for not coming in sooner and tells me you can’t mess around when you are on Sutent. He admits me to Hampton Sentara Careplex with an unknown infection. I end up with IVs and antibiotics for the next 5 days. I guess I learned my lesson the hard way! While in the hospital “Dr. Personality” visits me early one morning and tells me he only has a minute since he has to go to a conference and do a presentation. The next day he does the same right before my wife comes to be with me. She has questions and goes to the nurses’ station where and asks if he has a couple of minutes to answer some questions. He tells her “not really” and explains he is in a conference and is a presenter. The next day another doctor visits me from the practice and tells me and my wife we don’t have to stay with “Dr. Personality” that we could be seeing Dr. Mark Fleming who specializes in kidney cancer. Upon discharge we make the next appointment with Dr. Fleming. What a great guy, he answers all of our questions and begins at square one telling us all about the disease and things we should have known from the beginning. So…don’t ever stick with a doctor you don’t like or who isn’t giving you the service you feel you should receive…it is your life!

Since then….I have continued on the Sutent 50mg, 28 on/14 off. CT scans every 3 months that show no change. No change is good! The Sutent is working and continues to work. I continue to endure the side effects of the Sutent as the alternative is not real appealing to me. Enough energy to get through about half of the day, sore mouth, sore hands, sore feet, constipation, diarrhea, rashes on places you don’t want rashes, high blood pressure and taking medication for high blood pressure.

During my December 2010, Oncologist visit it is decided that after almost two years on the 50 mg Sutent it is too much for me as I am having too many side effects. It is decided to reduce to 37 ½ mg, 28on/14off. I should have less side effects and possible more energy. I just finished my first 28 days on the 37 ½ mg Sutent and feel that the side effects didn’t really kick in until around the middle of the 3rd week, yet not as bad as before. I still am going to bed around 8:00 pm every night, my “batteries are depleted “by then. Still I don’t get too far from the bathroom and find myself making emergency trips home to the bathroom. Hands, feet, mouth isn’t near as bad as before. I don’t know about the blood pressure as I know that won’t correct itself and I have to be on medication for it because of the Sutent.

I am now on a 3-month schedule of CT scan and Bone scans. I had an MRI in February and the results were better than the last time they took a close look at the tumors on my spine. However, a bulging disk, L5 S2 is causing pain down my legs. Tylenol should keep the edge off the pain unless it gets worse, then a visit to the neurosurgeon. I begin monthly shots in March of Xgeva to prevent bone breakage and in my case, spinal compression.

I refuse to let Malignant RCC get in my way. Nor will I give in to the side effects from the drug that keeps the cancer at bay! I believe in all the people who have been praying for me continually since December 2008. I believe all the prayer has pulled me through along this journey and has helped me to be in as good shape as I am. I will continue to enjoy my life, my work, teaching Yoga, kayaking, and riding my bike. I believe a cure is just around the corner. I continue to live life in a manner that makes me happy and fulfilled, and plan on continuing for many years to come. LIFE IS GOOD!


Craig is no longer with us here on earth as he won his battle with kidney cancer by the way he lived his life.  He will live on in the hearts of those who knew and loved him!

Craig's Family - October 2010

He and his wife Cathy, their son and spouse, daughter and spouse and 5 grandchildren