July 2010: Dennis Korce

Featuring: Dennis Korce
Written By: Joy Korce

My name is Joy Korce and I am married to Dennis Korce – who absolutely refuses to touch a computer. What can I say he’s a farmer at heart and a Kidney Cancer Survivor. This is his story.


In August 2006, he started having what he described as feeling tiny little pin pricks along where his appendectomy scar (an old scar from when he was kid). He went to our GP. She thought it might be an adhesion; however, a week or so went by and the prickly feeling was still there. She ordered an ultra sound and then a CT scan. She called our home on the Wednesday after Labor Day and reported there was a growth of some sort. We live in upstate rural New York. She immediately ordered him to report to the emergency room at Albany Medical Center with his scans. After many hours with the on-duty urologist reviewing his scans, we were informed he had kidney cancer. An appointment was immediately set up for 5 days later to meet with a Urologic Group in Albany. After many pre-op tests (bone scan, etc.), surgery was scheduled for one week later. Seven hours after surgery started, he was cancer free. Pathology: no mets, however, he was Stage IIIb due to Vena Cava involvement below his diaphragm.


He enrolled in the Wilex Rencarex Phase III clinical trial. This involved a trip to Albany every week for 6 months for an infusion. It was a blind study so we do not know to this day if he had the real drug. He also had monthly blood work with scans every 3 months. This was his schedule until December 2008. At that time his scans dropped to every 6 months. His next scan was June 2009 (six months after his previous scan). At this scan, he was diagnosed with a small tumor in his adrenal gland. Surgery for removal of the adrenal gland was July 1st. Pre-op testing included scans of his bones, brain, etc. He also had to meet with an endocrinologist. He would no longer have adrenal glands and would have to go on hormones. (That’s what adrenals do – which I never knew). He came through the surgery with flying colors. Again, cancer free.


He takes several hormone pills in the morning and a small pill at night. He has had no problems taking these hormones. Since his surgery last year, he has had to have an oncologist on board. This was scary for me, but I have to remind myself he is there to keep Dennis healthy. He was scanned 3 months after his surgery, again in January 2010, and then four months later on May 10, 2010. His Doctor feels confident in letting Dennis get scans every 6 months; however, if for whatever reason, Dennis would like to get scanned sooner, he can. He also meets with his urologist and his GP. Since his surgery, the doctor does not want IV contrast to help protect his kidney. His urologist also agrees. They both feel should there be something there it would show up and at that time further tests would be performed. He’s had frequent blood work, urinalysis and a chest X-ray - all with great results. He has great blood pressure and no other health problems.


We are truly blessed that after both surgeries Dennis was No Evidence of Disease and continues to be NED. I know so many of our fellow kidney cancer warriors have not been NED and have been through so much. I do try to remember you all in my prayers. Good bless each and everyone on you, your families and caregivers.


Joy Korce
New York

July 2010: Jill Maeder (Jill_44)

Featuring and Written By:
Jill Maeder (Jill_44 on KCW/Chat)

My name is Jill Maeder and this is my Kidney Cancer NED Story.

In the summer of 2009, I was a busy mom of 2 very active boys. I was working 2 part-time jobs, one as a Physical therapist in a busy outpatient office and the other as the program director for our church. I had been married to my husband for 21 years. I was the committee chairperson for the local Boy Scout troop, and busy organizing fund raisers for local non- profit groups. We lived in a very rural town in the northwest corner of Connecticut, in a town without a gas station or stop light. Life was good. At 44 years old with my busy life, I started to gain weight and stopped exercising as it was time consuming and tiring. I was tired all the time. I would come home from work at 12 noon and take a 2 hour nap. I explained this away by being on the go, all the time. I hadn’t been to see my OB-GYN doctor in 1 ½ years mostly because I was embarrassed about my weight and I was afraid he would be angry at me for my high cholesterol level. I blamed my hot flashes and night sweats on pre-menopause. Finally after taking to my co-worker whose 48 year old daughter died of ovarian cancer from not having her pap test regularly, and my own family history of breast and ovarian cancer, I went to see my OB-GYN for my yearly exam.

Everything went well with my exam, but 2 weeks later I got a letter that my blood work was off and I needed to see my regular PCP. Strangest thing, my liver enzymes were high. I am not a big drinker, so this was strange. I went to my PCP who ordered blood work to check for Hepatitis. One test came back positive, which led to more test, but all were negative. My PCP ordered a US of my liver and abdomen and they found a mass in my R kidney. He was not going to pursue the mass and wanted even more blood work for the hepatitis. I called the office and spoke to his associate who agreed to perform a CT scan as well as more blood work. I had my CT scan on Friday Aug 21, at 9 am. They asked lots of questions, but again, I thought they were looking at my liver. That evening at 6 pm, my PCP called me and told me I had a 5 cm tumor on my R kidney and that it was cancer. He told me he would set up an appointment with a surgeon on Monday and hung up. I was in shock. How could I have cancer? I was a healthy young woman with so much ahead of me. I spent the weekend with my husband gathering as much information as possible, talking to friends who are nurses and searching the internet.

On Monday morning, I called the office to find out when I could see the surgeon, and was told that the earliest they could get me was Thurs. I begged for something sooner and was told that it could wait. You should have seen how red my face was. I was beyond angry with how I was being treated. I called my friend who is an oncology coordinator and she was able to get me an appt the following day with the local urologist. I also called my OB-GYN and he personally contacted Dr. S. at Hartford Hospital in the middle of 2 deliveries and a C-section and got me an appt also on Tues.

I picked up my CT scan CD to take with me to my appt and learned the location and size of the tumor. It was 5 cm in the lower pole of the R kidney but not outside of the kidney. So, off I went to meet with the surgeons that will cut this monster out of me. The first surgeon met with me before office hours and told me everything would be okay. He was extremely reassuring to me and my husband, but he also wanted to take up my whole kidney at our local hospital. The second appt with Dr. S was later that afternoon. He works at a teaching hospital and uses the Da VInci robot to do a partial laproscopic nephrectomy. I choose him partly because of his skills and frequency of this particular surgery. He also looked at me as a woman who was going to grow old and needed the extra kidney to help if diabetes of kidney disease set in. I asked” when can you get this thing out of me?” He looked at his schedule and looked at me and asked “ is Next Wed a holiday?” I said no, but it is the first day of school. His whole day was open and in a busy practice that I usually would have had to wait 6 weeks, I was going to have the surgery in 7 days. There was a lots to do before surgery. Bone scan, Chest CT scan and physical to fit in quickly. All while getting the boys ready to go back to school, buying school supplies, organizing who would be at the house to see them off on their first day at school. I needed to tell my employers that I would need time off and reschedule all of my patients. I drove the boys half way to Maine and my mom came down to pick them up, so they could have a mini vacation with their grandparents. I had my bone scan and CT scan on Thurs and went to have my physical on Friday. My bone scan was clear, but my Chest CT showed a unknown mass in the sternum. My fear escalated through the roof. I thought that my cancer had already metastasised and knew that Grade 4 kidney cancer was a scary thing. My husband and I drove to Maine to spend the weekend with my parent for a family reunion with this terrible new hanging over us. I cried and cried and cried and prayed and prayed and prayed. I returned for my pre-op visit on Monday and signed all kind of forms including a consent form for my tumor to be part of a research project. My husband and I arrived at Hartford hospital at 5 am Wednesday morning. My sister, Lynn, who lives in Florida was in Maine visiting my family and agreed to stay with my family for a few weeks during my hospitalization and recovery. So, she was able to take care of getting my boys off to school. While waiting for my surgery, it seemed like hours waiting for the nurses to notice me. Then a flurry of activity occurred, to start an IV, take blood, review the procedure. Finally, I was on my way into the OR. My husband got a phone call about 2 hours into the surgery for clarification. I am not a vain person so I was very clear that a big incision across my abdomen was not a problem for me. The doctor wanted to make sure that converting the surgery to an open procedure with an 8 inch incision was my preference in order to save the majority of my kidney versus losing my entire kidney and having smaller incision. When I awoke in the recovery room, they inserted an epidural catheter for pain control and I was able to see my husband. They kept me in recovery for an extra amount of time as I had lots of pain medication that I had trouble processing out of my body. My hospital stay was 5 days with only a few difficulties. One of the problems was a lack of communication with my epidural. It was supposed to be removed on the 4th day but was not. So on the 5th day it was removed at 10 am and I was discharged at 5 pm. I was given oral pain medication, but I did not truly know how to control my pain and was not really taught that. So when I went home, I did not take the medications correctly and therefore, did not sleep for 3 days and cried a lot. I called my surgeon to ask if the pain level was normal and they had me have a CT scan worried about bleeding or other surgical problem. I did have a 9cm collection of fluid (blood vs. infection). My doctor then explained the whole concept of pain control through medication. This is one area I had no prior knowledge. Both of my children were natural childbirths and I have only ever taken Tylenol or ibuprofen.

The best news of this entire ordeal was that my cancer was at stage 1b being that is was 4.3 cm and Fuhrman grade 2. It was totally encapsulated in my kidney and the margins were clear. No further treatment is needed. Just watching for any further problems, I was to have follow-up scans in Jan. and then again in a year from diagnosis. The mass in my sternum was found to be a thymic cyst and will be followed up in a year.

My recovery at home was normal, once I had the pain under control. My church was wonderful, providing meals every other day and people to stay with me once my sister returned to Florida. I started walking to get back my stamina, one telephone pole at a time. After 3 weeks, I was able to drive. After 7 weeks, I returned to work. The physical healing is mostly over now, 9 month after this ordeal began. My abdominal CT scan (with contrast) results from Jan show normal healing in my kidney and no new area to worry about. I am due for both chest and abdominal CT scan again in Aug.2010. My blood work in Jan showed that my kidneys are functioning normally. My liver tests are almost back to normal. They were elevated due to a para neoplastic syndrome associated with kidney cancer. My cholesterol is slowly improving as I am eating better, more fruits and vegetable and fish. I continue to exercise 3-4 times a week but I no longer have to count telephone poles, usually miles either on the treadmill or outside in the beautiful peaceful nature. I am trying to eat and buy healthier foods including organic meats and produce.

But the mental aspect of this disease will always remain with me. Even though, I jump for joy and praise God each day that I am currently NED, in the back of my mind, I know that there is a small chance that this cancer could come back. I have a wonderful family and group of friends, but very few of them have had cancer. And kidney cancer is rather rare, so support groups that discuss it locally are not available. The internet chat groups, ACOR list serve and face book have been a wealth of information and support. I am usually a straight forward person. As a Physical therapist, I have witness a great amount of suffering and pain in other people; I am brutally honest with my patients about their disabilities even if they are not pleasant. I looked at this disease as a process. Take it one step at a time, learn everything you can about the disease, surgery, treatments, medication and make an informed decision with your doctor. Currently, I am being treated by my PCP for any medical issues unrelated to my surgery. I do not have an oncologist at this time, but I have the name of a specialist at Yale NH Hospital if I need to see someone. Am I scared?? Every day, and especially on days where I feel especially tired or stressed or feel nauseated or my legs swell. Any of the symptoms that I had prior to my diagnosis that surface again will cause me to worry. So almost a year after this journey began, I am still a busy young mom of 2 boys, married 22 (almost 23) years. I still live in a small rural town in Connecticut, but now I only work 1 part time job as a Physical therapist. I still try to do as much volunteer work as I can. I exercise regularly and eat well. My life has not really changed because of this diagnosis but I have. If nothing else comes from this posting of my story, If just one person reads this and says, I have some of those symptoms and visits their doctor early than I did, I will be happy that I could help someone else.

Jill Maeder
Conneticutt

July 2010: Julie Suplee

Featuring and Written By:
Julie Suplee

In April of 2007, I thought I was a completely healthy, happily married 35 year old mother of four. I was active, never smoked a day in my life, took good care of myself, and still couldn't purchase a bottle of wine without being carded.


Through a random accident in my home, my life was completely turned upside down. I took a huge tumble down our steps, and went in for an x-ray for a possible fracture of my hip. The horror set in when the doctor called to tell me that my hip was not fractured, but there was something wrong.


Our family went in to complete crisis mode. I had a "suspicious mass on my left kidney". The next week was such a blur. I had numerous tests, found a highly qualified Urologist at Johns Hopkins, and had a laparoscopic nephrectomy a week later. Then came the diagnosis: Stage 2 RCC, Grade 4 with sarcomatoid areas.


Immediately following the surgery, I was referred to an Oncologist at Hopkins. I entered the Assure clinical drug trial (Sutent, Nexavar, vs placebo) in hopes of preventing any recurrence. I struggled with this decision because I wasn't sure I had made the right choice to have adjuvant treatment. The side effects were rough. The thought was that I was on the Sutent arm of the trial. I had some of the more common side effects, but instead of my hair turning white, it just completely fell out.


I felt conflicted daily because of the physical cost vs. the benefit of this trial. I completed the trial in July 2009. A couple of weeks later, my Oncologist left Hopkins. I showed up for my first appointment with the new Oncologist (3 months later) and was told that I had some enlarged lymph nodes, but that it was probably nothing to worry about.


At the next appointment the nodes were showing significant growth. After my appointment, I decided to get a second opinion. Off to New York I went for a consult with Dr. Dutcher. She confirmed that I had several enlarged para-aortic lymph nodes and a mass around my aorta and adrenal gland. I left my appointment already scheduled to begin HDIL2 two weeks later.


I underwent two cycles of HDIL2 treatments in November and December 2009. It was everything I imagined it would be, but well worth it for a shot at NED. After 12 weeks of wait and watch, it was decided that I had run out of time to wait. The IL2 may have been working, but the mass around my aorta was just too close for comfort, and was approaching what my surgeon referred to as an inoperable state.


My family and I struggled with this news and the reality of facing a very risky surgery. In March, I returned to the doctor at Hopkins who did my original surgery. I underwent a mass excision as well as removal of 14 lymph nodes and my adrenal gland. The surgery was deemed a huge success and, at my six week follow up, I was declared NED.


This news was bittersweet, because it came paired with bizarre pathology results. The pathology took several weeks to return, and when it came back, the doctors commented that they were baffled...9 of the 14 nodes and the mass were positive for RCC, but the new pathology appeared significantly different than the original. Red flags went up, and a test for TEF3 was ordered.


I have now been diagnosed with a rare form of RCC. I felt so lost. In my three years of research, and following ONC list, I had never heard of this rare subtype of RCC. Its medical name is XP11 Translocation RCC, but what this really means is that I am an adult diagnosed with Pediatric Renal Cell Carcinoma. From what I understand, it is a genetic mutation where there are gene fusions involving the TEF3 transcription factor gene. This mutation is present, and then there is some precipitating event which causes the cells to become cancerous. I am not completely sure my understanding is on the money, but this is what I took from the explanation given to me. There is very little information about what the diagnosis means clinically, because there are so few reported cases that there isn't a clear pattern for behavior of the cancer.


I truly have a sense of relief that I am currently NED, but it feels so new I can’t honestly say that I trust it yet. Our family had become accustomed to the roller coaster ride cancer has taken us on. Our children have adjusted to the frequent medical trips. Four years is a long time to young children, and this has just become a part of our new life; the ‘New Normal’.


Dr. Dutcher has given me a great description of what to expect from this new branch of RCC. She calls it a "nickel and dime you disease." This seems to make it so much less daunting and much more manageable for me.


This lifestyle has made our children amazing in coping with change, as they do not seem to panic every time I have an appointment or leave the house (like in the beginning). We are still so cautious about celebrating. It just feels better to ignore it for a while until I am further out. I decided that I am going to live my life the best that I can, and enjoy my family and friends.


Julie Suplee

July 2010: Lee Cooper

Featuring and Written By:
Lee Cooper

Hello everyone my name is Leona (Lee) Cooper and I have been asked to tell you about my journey with KCC.


Lets start at the beginning.  I am a 67 (soon to be 68) year old woman who has been told that I have a great admiration for life and people.  I have 6 children, 4 biologic and 2 step children, 16 grandchildren and 4 great grandchildren. I have the most wonderful man in my life who is my rock along with my children and some pretty special ladies.

At the young age of 64, I decided to try to skate and ride a bike again. Of course, that led to many falls and scrapes.  Also, about the same time, I was constantly feeling like I had a flu bug - nothing to make me see the doctor but enough to annoy me. I also had a sore on my back near the kidney area. A doctor had previously told me I had a degenerative disc that was crushed, and I was sure it was the disk causing the pain.  My family doctor sent me for physio which, of course, didn’t help. Then, I went to a chiriopractor for about 1 and ½ years. Still, all the while, feeling like I had this darn flu and sore back which would come and go. Finally, I told my doctor I wanted a MRI as nothing else was working. October 2008, I had the MRI and they saw this mass which I knew in my heart was cancer. After seeing my family doctor, I was sent for an Xray and of course the mass was still there. In November, I was sent to see Dr. Girvan, Urologist, who did blood work, and a chest xray. I can tell you I was one scared puppy - actually, I was very scared. I had just had my mammogram and chest Xray with no bad results.

So, on December 10, 2008, I had a CT scan. I went with my son to see the urologist on December 20, 2008, and he told me I had a very rare form of cancer (adrenal) which only about 3 % of the population get with a survival rate of 1%.  Well, I can tell you I was totally shocked. My son was trying so hard not to show how he felt; but I was angry, as I knew I was not ready to leave this world. They explained that it probably came from the lungs or breast area. I have never in my life been on such a roller coaster as I was that day and nite. On my way home I started to tell the good man upstairs (God) that I was not going anywhere as I have twin grandsons who are 14 and I will be sitting in the arena when they are called to the NHL draft...and that was that!  I was not going to go peacefully. Well, by this time, I was crying so hard I wasn't making any sense and had to pull my car over. Thank God people just drove by.  It was the scariest nite of my life. The next morning, I made a vow that this would be the very best Christmas for my family and loved ones. I went shopping for groceries and had just paid the lady when my cell rang. It was the doctor telling me they had made a mistake. I did not have Adrenal Cancer; instead, I had Kidney Cancer. Well, let me tell you, I never thanked anyone so much as I did that poor doctor.  He kept saying "but you still have cancer" and I kept saying "That's okay. I can beat this. At least, I am not going to die. At least not right now."

I left my groceries in the store and went outside to phone my son and partner. A man came running out and told me I had left all my groceries there. I told him I was going to live and that I had totally forgotten about the food. We had a good laugh. Of course, everyone was so pleased with my news.

On January 23, 2009, I entered the Queensway Hospital in Ottawa and underwent a left radical nephrectomy. The final pathology showed a conventional clear cell, renal cell carcinoma, Furman grade 2, measuring 7.1cm. confined to the kidney. I had my kidney, adrenal gland and a rib taken out (rib studied to make sure no bone cancer).

I was in intensive care for 3 days and then moved to a private room and sent home on the 5th morning. How blessed was I..the cancer was gone.

Well, I did all the follow up stuff that needs to be done and it was nothing but good news. Now that being said, I kept crying and was still so scared.  I figured I was still going to die but never wanted to tell anyone about how I felt. I am good at wearing a mask and hiding my feelings from the world. I finally took the bull by the horns and phoned the Canadian Cancer Society and told them what I had been through. They had a woman who was near my age and had gone through the same thing call and speak to me. You can bet that this made me feel so much better. I still cried but not so scared anymore. Then one day I decided to start Kidney Cancer Survivors on facebook and wow the response was overwhelming.  I never knew so many people had been through the same disease. How fortunate was I to read all the stories and signs of Hope. I have to say I still cry a lot but am not so scared anymore. I met a wonderful lady by the name of Julie Hawkins Thrush (who is also a Kidney Cancer Survivor) who became my friend and has been there for me whenever I have a question.  This site has helped me more than I can possibly say and I want to say thanks to all of you. I just passed my 1 1/2 year mark and am still NED. I found a job working for a real estate lady and do it part time.  I have a great partner, family, friends, health and job. What more can anyone ask for.

Thank you Leigh for letting me share this journey.  If anyone needs to talk to others, just let them know we have some good sites to go to for information now.

WE WILL BEAT THIS NASTY DISEASE!

Lee Cooper

July 2010: Rod Copeland (Oilseekr)

Featuring and Written By:
Rod Copeland (Oilseekr)

Hello. My name is Rod Copeland. I am a stereotypical kidney cancer patient/survivor. I am currently 62 years of age. My wife, Karen, and I were married in June 2008, six months before I was diagnosed with this disease. We have five sons between us all from prior marriages. She has three and I have two. All are grown and out of the nest, with the exception of Karen’s twenty-two year old, who lives with us.


I am a U.S. Navy veteran of the Vietnam era (1969-1973) and after coming home I finished my college education receiving a BBA from the University of Texas at Arlington in 1975. I worked for a CPA firm for a couple of years and then as a financial officer of a publicly traded oil company. In 1979, I started my own oil production and development company and have been in the business ever since. The oil business has always been notorious for its ups and downs, and over the past thirty-one years, I have seen those good and bad times. Some phenomenally stressful times were encountered a couple of years before my diagnosis, which I believe may have been the precursor to my developing kidney cancer.


The week of Christmas 2008 came with more anticipation than usual. Family celebrations were all planned and we were all anxious to celebrate and see our family members coming in from across the country. The week before, I had experienced some lower flank pain on the right side of my back. It was painful enough that I sought the comfort of a heating pad for a couple of evenings in my easy chair. The pain subsided and I just assumed that I had pulled a muscle. Then, on Christmas eve, I began to pass blood in my urine. I contacted my family physician and scheduled an appointment for Monday the 29th. I was told to watch for a kidney stone and to go to the emergency room at the hospital if the pain warranted such during the weekend. The amount of blood increased and was clotting in my bladder, preventing the passage of urine. After passing several large blood clots over the weekend, the blood decreased. My doctor did a physical exam, and sent me to the hospital for a CT scan.


It is a fifteen minute drive back home from the hospital, and as I walked back in the front door at my home my phone was ringing. It was the hospital calling to tell me to return for another CT scan with contrast as per my doctor’s orders. So, I returned for the scan and was told it might be a couple of days before my doctor would go over the results with me. Finally, on New Years Eve my doctor phoned. He did not mince words, and came straight to the point, saying, “Rod, I have bad news for you. You have kidney cancer.” I was doing paperwork in my office and the words seemed to echo in my mind. I had never heard of anyone with kidney cancer, and did not know anything about it. Just hearing the “C” word coming from my doctor was like being hit with a brick. I spent what seemed like an hour letting that statement soak into my mind, and thinking through it. I had to call Karen and after that I assaulted the internet to learn about my new enemy. It did not take long to see that it was going to be a war like I had never been involved in before.


My GP told me the scans showed a large tumor on my right kidney and advised me to get to a urologist as soon as possible. On January 2nd my wife and I conferred with the urologist who had already reviewed the scans with the radiologists. I was scheduled for an MRI and saw the urologist again the next day. The tumor was large and had extended into the renal vein and was on the verge of entering the inferior vena cava. The urologist told me that the only course of action at the time would be surgery to remove the tumor. I informed the urologist that I had already contacted MD Anderson Cancer Center in Houston and wanted to have any surgery and treatment done there. He was in complete agreement.


Upon my first consultation at MD Anderson, the doctors informed me that they would not give me any additional iodine contrast agent with my scans. They indicated that I had already had so much contrast that they were fearful of damage to my kidneys. At the time, this comment did not gain my attention. Later I would discover it was significant.


On February 5th 2009, my surgeon Dr. Surena Matin removed my right kidney, adrenal gland, six lymph nodes, and the tumor. Dr. Matin was receptive to my request for attempting the nephrectomy via laparoscopic surgery and this was the initial procedure. He was forced to abort the attempt as he found the tumor to be hard to access and switched to open surgery techniques in order to better facilitate the complete removal of the thrombus which had grown and extended into my inferior vena cava. Recovery from the surgery was uneventful. I was in the hospital for five days, and dismissed to return to Abilene with a large incision with staples and four “bullet holes” that would heal rapidly. There was some concern (post-surgery) relating to the reduced function of my remaining kidney. Apparently, there had been some damage that could not be known prior to surgery. My creatinine level was above 3 and it was being watched closely.


Prior to the surgery, MD Anderson doctors advised me that I would be an excellent candidate for an ongoing clinical trial called ASSURE (ECOG2805). Pre-operation scans showed that I would be considered in the high risk category for recurrence of kidney cancer after surgery. The trial was being done to ascertain the effectiveness of Sutent, Nexavar, and a placebo in a double blind study, wherein the patient would be given one of the three drugs for 54 weeks. Nine, six week cycles, would entail documenting the effectiveness of preventing the return of kidney cancer and all the side effects the drugs produced. I was eager to participate and hopeful that my participation would benefit others as well as myself.


Karen and I returned to Houston for our post-op consultation. My tumor was staged at T3b G3 N0M0. All six lymph nodes were negative for indication of cancer, and no remote metastasis could be found. Dr. Matin said all margins were negative, and he thought there was a good chance that he had “gotten all of the cancer”. Of course the usual disclaimer was then voiced, stating that no one ever knows for certain in cancer surgery.


We then went over the paperwork and I officially signed up for the clinical trial. Dr. Matin warned that the regimen would be rough physically, and to expect to be “beaten up” if I received one of the “real” drugs.


Volunteering for the trial also meant numerous six and one-half hour drives from Abilene to Houston on state highways.


On April 4th, 2009 I reported to MDA to pick up my first cycle of drugs. I began to notice some side effects within two weeks. The first SE’s were itchy skin and scalp. That was followed shortly with itching inside my ears which was particularly annoying. Beginning Cycle Two, I was experiencing diarrhea daily. At the half way point in Cycle Two, temperature sensitivity in my hands and feet had developed. This developed into “hand and foot syndrome” in the next weeks. The skin on my hands and feet began to crack and at times it was difficult to even use a fork and knife. I never got to the point that I could not walk, but there were times when my feet were extremely sore.


I began to lose hair in Cycle 3. Although I did not lose all my hair on my head, it got very thin and I opted for a burr haircut. I also lost all the hair on the rest of my body which proved to be more chilling than I had imagined during the winter months. Fatigue became a major factor with the drugs. I reached a point where I would have to stop work and nap in the afternoons. In Cycle 4, I developed some mouth sores, but found relief with a baking soda mouth wash. The mouth sores only lasted for about a month. Diarrhea became the most significant side effect. I could not venture out anywhere without toilet facilities. Six to ten episodes per day were the rule, and staying hydrated was difficult as I knew the more I drank the worse the situation could become. This also drained my energy levels and I got even more fatigued as time wore on. The hand and foot syndrome began to improve after about three cycles. It never completely left, but it became much more tolerable, and I could do most of the things with my hands that I normally did in the past. It became apparent from my side effects that my drug was Nexavar (Sorafenib). My side effects never eased up during the six week cycles. My trial nurse said if I were taking Sutent I would see some relief in some SEs during the two week period I was off the Sutent.


Every six weeks we were off to Houston for another check up and a refill of the drugs. With two cycles remaining, I began to experience some nausea with the medicine. The routine became tenuous in the last cycles. I dreaded taking the drugs knowing almost to the minute when I would be feeling bad as a result. Approaching the end of the drug portion of the trial aided my conviction, and Karen was always there supporting me and helping me with the side effects.


Throughout the trial, my remaining kidney was noted to have improved but still reduced in function. After a few months, my doctors indicated that the function was good enough that they felt I was in no immediate danger of needing dialysis.


When my doctors learned of my family’s history of cancer, I was sent to Genetic Counseling at MDA. On my father’s side of the family there were eight siblings. Six of the eight (including my father) died of some form of cancer, and the one remaining sibling currently had lung cancer. Two of my cousins from this side of the family had kidney tumors, with one of them being RCC. The genetics review entailed a complete family history with as much medical information as could be found being provided for the evaluation. Since there was such a diversification of different types of cancer within the family, it was determined there was a 95% probability that it was not genetically related.


I completed the drug portion of the clinical trial when I took my last dose on April 15, 2010. I was able to complete the regimen on full dose and never had to reduce my dosage. There were times when the hand / foot and other side effects had my clinical trial nurse and doctor telling me that all I had to do was “say the word” and they would cut the dosage. I was determined not to let that happen due to a conversation I had with another patient at MDA. A happenstance discussion revealed that he had been in the same trial. The side effects were growing heavy and his prognosis was good without participating in the trial. He opted to drop out and not suffer from the SE’s. Eight months later, his kidney cancer had metastasized to another organ. He told me that he regretted not sticking with the trial, so much. He said he would always wonder if he would be NED had he followed it through. He pleaded with me, “Whatever you do, hang in there and stick it out!” His words haunted me throughout the trial.


A few weeks after completing the clinical trial drug regimen, I experienced some significant swelling in my calves.


Phoning MDA, they had me go in to see my family GP and get some blood work and an echocardiogram. One of risk factors involved with either of the “real” drugs in the trial was potential damage to the heart’s left ventricle function. The echo came back reflecting reduced function of my left ventricle, and the report was faxed to MDA.


MDA immediately set an appointment with one of their cardiologists who specializes in heart problems related to cancer drugs. An EKG and another more sophisticated echocardiogram were done. The cardiologist examined me and advised us that there did not appear to be damage to my heart from any heart attack, but he wanted to review the new echo before making any other recommendations. Later that same week, we drove back to Houston for my scans and blood work. The cardiologist had not yet consulted with my cancer doctors, but my blood work indicated my kidney function was reduced again. The scans could not be done with contrast, and I was instructed to start seeing a nephrologist upon my return to Abilene. This is our current status.


Kidney cancer has, of course, changed my life. I think all patients would agree that the perspective of life itself is seen in a whole new light. Our faith in God, and love from (and for) others sustains our battle. Future plans are modified and what is important to us radically changes. These are normal manifestations of the diagnosis. The gift of the diagnosis is a reality takeover of your mind. It can be positive or it can be negative. Making it positive lets us live in a more enlightened mindset. To love and cherish the things we overlooked previously, is truly a blessing that we need to share with others who can learn from our experience. I am not the first, and probably won’t be the last to say that as strange as it may sound, kidney cancer has been a huge blessing in my life. The world I live in now, is just amazingly more beautiful than the world I once knew. I give thanks for that!


Whatever is in store for me is just the same as it ever was. My life is in God’s hands. It always has been.. and that’s a wonderful place to be!


I had the great fortune of finding Karen six months prior to learning I had cancer. At times, I so regret that she has to travel this road with me. It doesn’t seem fair, but God put her there for me, and I for her. Without her, I do not know how I would traverse this course. I can not imagine the battle without her. So, we will prevail together with our Lord looking over us. It’s not a fight I relish, but it is a fight I accept with the faith and conviction that can only come from our Lord.

Rod Copeland

Abilene, Texas

July 2010: Ruth Ann Stoner Nieves

Featuring and Written By:
Ruth Ann Stoner Nieves

(Daisy3 on Kidney Cancer Forum)

I was born and raised in California. I studied in Granada Spain for 1 year when I was 19, fell in love with a Spanish man, married and have resided in Spain permanently since 1976. I have 2 adult children who live near me, I’m 58 years old.

My cancer story started in late January, 2004, just before my 52nd birthday. I was feeling better than ever, had been on the Atkins diet for 7-8 months and shed some excess weight, was doing aerobics and swimming regularly, and my professional career (I teach American Literature at the University of Malaga in Spain) was at its height. I had defended my PhD dissertation in 2000, I had obtained a tenured position at the University in 2001, and had presented a paper at a literature conference in the States in which I had received great public praise by the most prestigious experts in the field. I felt on top of the world. I had made an appointment to get my body into better shape (nothing more than artichoke and heat and massages) with a clinic, where they asked for a blood and urine test. My urine came back with traces of blood. The doctor told me it could be nothing, but it could be something. Before I could get an appointment with my family doctor, I saw the blood in my urine with my own eyes. And within 24 hours I began having the most excruciating pain I’ve ever experienced, while passing bloody tissue in my urine. My husband drove me to ER, and they gave me a painkiller and ran some tests (blood and sonogram), and admitted me. The next morning the urologist, who would become “my” urologist, stopped by and said I had a little cyst on my kidney and it would need to be removed, in no rush, but the sooner the better. I was shocked as I was almost certain I had kidney stones. At any rate, it still sounded quite harmless, and the urologist scheduled surgery for a week later, and explained it would be by laparoscope, and nothing serious. I was in the hospital for 3 days under observation, and on the last day, the urologist’s partner came round and told me the truth: not a cyst, but a tumor, a malignant tumor, and they would be removing my entire kidney. I went into a state of, for lack of a better definition, I will call denial.

The next week (5th February) my right kidney was removed laparoscopically. The pathology: carcinoma of conventional renal cells, grade II, stage I pT2, 7 x 4.5 x 4.5 cm. I woke up from the surgery feeling fantastic on a Friday and on Monday I was released. I felt physically good, but I felt that it had all been too fast and I had not had a chance to even think about it, much less give my opinion or get a second opinion or see an oncologist. I felt my kidney had been removed without my permission. I was back at work while I still had stitches. I had a checkup scheduled for 3 mo., then 6 mo., then at one year intervals at which I was told they’d got it all, I was cured and best to forget about it and live life. After my 3 mo. checkup, out of my own curiosity, I went to see an oncologist and told him I was worried and still in a state of semi-shock and wanted a brain scan. He complied, told me I’d done the right thing, the scan was clean and that I should follow the instructions of the urologist. Not one single doctor had ever used the word “cancer” in my presence.

At this point I started thinking about a bucket list, coming to the realization that there was no guarantee that I would live to be ninety or more, like my healthy and robust parents. In May of that year I combined a trip to California to attend a literature conference in San Francisco with a visit to my parents and meeting up with my daughter who was teaching in Kentucky at the time. I felt great. When I got home I decided I wanted to go on the pilgrimage of the Camino de Santiago in the north of Spain, which is about 900 kms., over hill and dale, through villages and cities. I am not an outdoorsy person at all and certainly not a hiker, but I thought this was something I needed to do to get in touch with my innermost being and to find a spiritual answer to the meaning of life. So I started reading up, gathering gear and training, with a planned date for the next summer, of 2005.

When June of 2005 rolled around, I was scared, but I wanted to do it, so I negotiated with myself and decided to do the last third of the pilgrimage, from Astorga (León) to Santiago. I left for Astorga with my backpack on the 24th of June and arrived in Santiago with bleeding feet 18 days later. All in all, it was a fantastic experience.

My next bucket list event was to apply for a research grant to study at Harvard. I got the grant and flew to Boston in February of 2006. I was there for 6 months, living in the apartment reserved for the Irish poet Seamus Heaney, in Adams Hall. This was my first time in New England, my first snowy winter, and of course the first time in such a prestigious University. I had the time of my life, was able to travel around to the homes of American writers and attend fantastic lectures and cultural events. I also became the godmother of a Boston baby and was allowed to “nanny” to my heart’s content. (My bucket list contains having a grandchild, so my godson substituted!)

In the fall of 2006, back in Malaga, I started having “irritable bowels” and began seeing a digestive Dr. who sent me for stomach x-rays, an endoscope and a sonogram. The only visible anomaly was a hiatal hernia. But when the doctor put pressure on my right lower abdominal area, there was pain, and the Dr. told me I needed to get a CT scan as soon as possible. This coincided with my annual urology checkup, but when I contacted “my” urologist, I received the news that he was no longer working for my insurance company. I was shocked and hurt by this news, so I had to find a new urologist. In December I saw one, got the order for a scan, and when it came back, it showed a fairly large tumor (8 x 6 x 4 cm) in the area of the right iliac pit. It also showed a small nodule in the suprarenal region in the right pillar of the diaphragm, but this was totally ignored. I also had a PET which showed both tumors, but for whatever reason the suprarenal nodule was ignored. I was devastated by the news and began organizing my “life” for an imminent death. I immediately made an appointment with “my” oncologist, and he recommended a respected surgeon to me. When I saw this surgeon, he told me he would operate, but it wasn’t his specialty, and that it should be a urologist. However, he did order a biopsy to be done, and it came back rcc,, as expected.

I was in a real panic, not knowing who to approach to operate, but through my friendship with the radiologist (she’d been my English student), “my” original urologist was contacted and he offered to do the surgery, free of charge. I also saw a psychologist at the University where I work who simply advised me to get going on my bucket list. So at the end of January I had the tumor (described as localized) removed and then my oncologist recommended follow-up radiation therapy, even though he knew it would probably be to no avail, but “just in case”. As a consequence of this surgery the nerve endings on the surface of the top of my right thigh are permanently impaired. I was back at work 3 weeks after the surgery.

Before the radiation started in April, my husband and I fulfilled another bucket list event: a trip to Prague, Vienna and Budapest. The sights were fantastic, the weather perfect.

I had 17 sessions of radiation (up to 48 Gy) from April to May of 2007. We Went to a Rolling Stones concert in Almeria in June. When my next CT scan was due, in July, I was told that “my” oncologist was no longer working for my insurance company! Again, I felt so abandoned. A new youngish oncologist ordered the CT scan and it came back still mentioning the little suprarenal nodule, as well as a “spot” in my left lung. However, the oncologist said it was nothing, and to prove it, she would order a PET scan. I also told her I needed psychological help for cancer patients, and she told me I didn’t, because I didn’t have cancer.

I wanted to wait until August for the PET as I wanted to attend a close friend’s wedding in the north of Spain and my husband and I had decided to drive the Santiago pilgrimage backwards, from Burgos to France, about 600 kms. We had a great time on this road trip and at the wedding in Andorra. When we got home, I had the PET which confirmed the suprarenal tumor, now 3 cm., and soon had to hear the oncologist say, “Oops! I thought it was nothing, but it’s something.” She then told me she would put me on a brand new almost experimental drug, Sutent, as she thought the tumor was located in a place that could not be removed, and at any rate, it was obvious the disease was no longer localized, it was systemic, “it’s all over your body” (!!). She did say that I could “find” a surgeon and ask about the possibility of resection. I was totally panicked and had no idea what to do. I had read very little about the disease, only knowing that it responded to next to nothing.

I decided to go for a second opinion to one of the most prestigious university hospitals in Spain, The Clínica Universitaria de Navarra, in Pamplona. I also contacted the M.D. Anderson in Houston, but knew I could never afford it. We travelled to Pamplona with my scan, but with no formal medical history, as I was never given one. Almost immediately, the wonderful oncologist assigned to me, Dr. Gil Bazo, told me he thought the nodule could be removed. I had a lot of tests in 3 days, a CT scan, a bone scan, MRI (to make sure that some vertebral signs were not cancer) blood, and the urologist told me he could remove the nodule. I felt like I’d been reborn. I was also given an estimate of the cost, as this hospital was not included in my insurance. I got a loan from my bank to cover the cost and was operated on 31st August. Pathology: 3.5 cm, type II rcc. The oncologist recommended radiation therapy again and I decided to have it there in Pamplona, even though I would have to stay there alone. I rented a room for a month and a half from October to November and had 21 sessions (up to 45Gy).

Upon returning home I saw my oncologist and told her plainly that I was not satisfied with either her service or that of my insurance co. I wrote a formal complaint to the insurance co. complaining about all the changes of doctors and having to go private to get decent treatment, but the complaint was ignored. I decided that it would be better to drop the private insurance I had and get into the National Health System, because the private company did not “coordinate” in the case of a serious illness, whereas the national system would. This took place in January 2008. When I had my first oncology appointment, much to my surprise and dismay, I found myself face to face with the same oncologist! I saw her a second time and then I asked to be assigned to a different oncologist. I then started seeing Dr. Trigo, who has captured my faith, trust and admiration. At this time I also started seeing a psychologist specializing in cancer regularly through FMAEC, free of charge.

I was now having CT scans (with contrast) and blood work every 3 months. All good. In July and August of 2008, my husband and I decided to fulfill another bucket list item, a big one. We carried out a road trip from the West Coast to the East Coast of the U. S. and back again, lasting 50 days. We did a lot of fun things on this trip, such as seeing Stevie Wonder, white water rafting, many national parks, a historic railroad trip, Crazy Horse Memorial, Niagara Falls, driving all the way to Key West, Taos (and D. H. Lawrence’s house) and following bits of Route 66, among other things, I had dreamed of. When we returned we took our 2 children and their partners to a Madonna concert in Seville. In February of 2009 my husband and I had a week in Punta Cana in the Caribbean with 2 other couples. Later that year my husband and I went to Rome for a week at Easter then my daughter and I had a mother daughter mini-vacation and saw the Pretenders in Madrid. Then my husband and I visited Amsterdam for a week in October, and then back to Punta Cana in the Caribbean for Christmas.

Just before the Amsterdam trip, I had a CT scan that pointed out several “nodules” in my lungs that could be metastasis. My oncologist in Malaga, Dr. Trigo, said the spots had been there for a long time and had not grown and not to worry, and that my next scan would be in 6 months, instead of 3-4. We decided to go to Pamplona again for a 2nd opinion. “My” oncologist was unavailable, so another oncologist there reiterated exactly what Dr. Trigo had said.

My husband and I travelled to the States to visit with my parents and celebrate my mom’s 90th birthday in Feb. 2010. We took my parents on a trip to London Bridge, Sedona and Las Vegas and celebrated the birthday with family and friends. We also discussed the possibility of going back to California permanently, on retirement in a couple of years, to take care of my parents and be there to brighten their days. My husband and I were also attending ballroom dancing lessons and having a lot of fun with it.

I then had my CT scan in March. In between having the scan and the results, completely out of the blue, my husband packed up and left me. I simply could not believe it. He took sick leave for depression and just walked away. I was devastated. Then about 5 days later I got the results of my scan: those nodules in my lungs WERE growing! There were 3 in my left lung and 1 in my right lung. My lungs!! Dr. Trigo recommended going on Sutent. After a week-long pity party, I got on internet and started getting information and realizing for the first time that I, myself, would have to take control of my body, my cancer. At this time I visited a non-profit org near where I live, Cudeca, who were able to confirm that my oncologist in Malaga was excellent. Dr. Trigo ordered a PET scan and I asked for a brain scan, which he agreed to. I went over all the information with Dr. Trigo that I had gathered from internet and especially from the Kidney Cancer Association and all of the wonderful friends I had started to make through Facebook, such as Bill Bro, Lynnette Boundy, Katherine Phillion, and the Kidney Cancer Konnection chatrooom, they all gave me so much hope and support. I discussed surgery, alternative therapies, prayer, etc., but Dr. Trigo remained firm about Sutent.

I also had an appointment with an oncologist in the M.D. Anderson in Madrid for a second opinion. She coincided with Dr. Trigo about going on Sutent and tried to get me into a clinical trial of Sutent v. Votrient, but I realized I could not afford the travel and tests involved.

I travelled to Pamplona around the 20th April for another 2nd opinion and my oncologist, Dr. Gil, for the second time, had another game plan. He also was running the same clinical trial as M.D. Anderson, but he thought surgery was a much better option. He wanted to put my account at zero, explaining that there would always be time in the future to start drug therapy if the cancer reappeared. He did another scan and I spoke with the thoracic surgeon, Dr. García Franco. Dr. G. Franco explained that he had trained in the Mayo Clinic in Minn and that he had very successfully done this type of surgery many times. He explained that he would operate on the left lung first, the “worst” lung, and then within a week to 2 weeks would operate on my right lung, probably by VATS. He also explained that he would go in and palpate the left lung in search of any nodules too small to be captured in the scan. He told me that each operation would require 5-7 days in the hospital. I said I wanted to stay in the hospital between surgeries, but that was vetoed because of the risk of infection, and I was told to rent an apartment or stay in a hotel near the hospital for the space in between. I also asked if I could have the surgeries at the same time, to which the surgeon said I could, but he did not recommend it: if the lungs were to collapse. . . . My 2 children, who were now by my side at all times, were convinced surgery was best. I had already reconciled to going on Sutent and found it hard to imagine going through 2 surgeries. I would also have to pay (getting a bank loan ) for the surgeries and care in this private hospital, plus travel expenses for me and my children and the inconvenience that Pamplona is a 12 hour drive from Malaga, and the connections by air and train (very expensive) leave a lot to be desired.

I had promised Dr. Trigo to return with my 2nd opinions so that he could assess them with me. Dr. Trigo felt that surgery was too invasive and maintained his desire to start me on Sutent. But when I asked him the question: “What would YOU do if you were me?” he said he honestly could not answer, he didn’t know, and that is the moment I knew I had to choose surgery. Dr. Trigo also told me I could get another opinion from his mentor, Dr. Bellmunt, in Barcelona, who is supposedly the maximum expert on Kidney Cancer in Spain, but I felt too exhausted. I wanted to make a decision I trusted and stick with it. I also asked Dr. Trigo about having the surgery in Malaga through the National Health System, and he immediately vetoed that, saying that if the surgeon in Pamplona trained in the Mayo, he could be trusted. I still found it hard to imagine going in voluntarily for 2 surgeries, as I felt so wonderful. . . .but I was also beginning to feel the same dread of going on a drug with side effects.

Around the 5th of May I was fortunate enough to be able to travel to London to attend the 1st Seminar for Kidney Cancer Patients and Caregivers, held by the Kidney Cancer Association. This was a fantastic opportunity to get first hand information about treatment options and to mix with other patients and hear their stories. So I had the opportunity to ask the surgeon, Dr. Aitchison, and an oncologist, Dr. Pickering, about my personal options and they both concurred with my choice for surgery. This got my confidence back! (I also met up with a friend and went to see the Thriller musical, I love Michael Jackson). My daughter gave me a book to read: Surviving Cancer, by Margie Levine. It is excellent and just what I needed. I then ordered some more books, but the best by far for me were: Remarkable Recovery, by Caryle Hirshberg and Marc Barasch and Anatomy of an Illness, by Norman Cousins. These books gave me hope and inspiration for concentrating on curing my illness and staying positive.

I also had the added complication of whether or not to tell my aging parents, so far away from me (my younger sister passed away with complications from multiple sclerosis in 2001, aged 46). I finally decided that if I were them, I would want to know, so I told them in as positive a way as I could.

So I had my first surgery scheduled for 13th May. I drove to Pamplona with my son, and then my daughter arrived on the day. I checked in on the 11th to spend that evening and the next day on preop tests: blood, heart, lung power, chest x-rays, etc. The worst test I had was drawing blood from an artery on my wrist. It took 3 different attempts, was very painful, and I got faint the first try. I asked the surgeon if that test could be omitted from the 2nd surgery and he agreed. I was given an anti-bacterial ointment to put in my nose and was put on aerosol throughout the day. The anesthetist came round and explained I would have an epidural, and the surgeon explained I would be in ICU for 1-2 days. He also said they’d found I had a “leaky valve” in my heart but that it was very minor and would not make a difference in the surgery. I had my betadine shower that night and was taken to OR around 10 the next morning.

I awoke from the surgery feeling fantastic, I think it was around 4:30 p.m. Wide awake and feeling happy. Dr. G. Franco came in and I told him I loved him! Then I saw my children. At some point, before I wanted to, they got me up & sitting in a chair. I was also visited by a physical therapist who went through breathing exercises with me and made me cough. She said I was doing excellently. After 24 hours the Dr. said I could leave ICU for a regular room and diet. I got excellent nursing care, excellent food, and the surgeon visited twice a day to tell me I was doing much better than any other patient he’d ever had! I was told that the 3 small tumors had been removed, as well as 3 others invisible to the scan, and that he was pretty sure that 2 of these 3 were malignant, but one was not. Nevertheless the pathology report would take at least a week. And if the 3 happened to be benign, then he would perform the right lung operation by VATS. By the 3rd day the drain was removed and I got up and got dressed and went for a walk outside the hospital. On the 4th day the Dr. told me I could leave the hospital, but I said I wasn’t ready, he understood, but said I would spend the next 24 hours as if I were home (dressed and walking around). My son and I made arrangements to spend the time between operations (the 2nd one was now scheduled for the 24th May) in Roncesvalles, about an hour north of Pamplona at the foot of the Pyrenees. However, when we left the hospital on that Tues. morning, I said, “Let’s go HOME!” So we made the almost 12 hour drive, and in fact I drove for about 3 hours.

Coming home was good and not so good. I was happy to be home, and happy for my son who had been with me the entire time, away from his wife and job. But not finding my husband in the house was too much, it made me sad beyond imagination.

But I thrived and got stronger and happier each day. I took no medications at all. And soon I was packing my bag again for the trip back to Pamplona. This time I drove up with my 2 children and I did not have to spend an extra day in the hospital, nor have so many tests: chest x-rays and blood (not artery!). I checked in the evening before, saw my lovely surgeon who told me that the pathology report had confirmed his suspicion about the tumors: 5 were malignant, 1 was benign and because of that he felt that he would have to go into the right lung conventionally and palpate it also. I felt relieved by this news although I also was hopeful that a keyhole type surgery could have been done.

I did the betadine shower and was taken to surgery at about 8 a.m. When I woke up in ICU, I think around 1 p.m., I did not feel great the way I had before. I was drowsy and uncomfortable and spent the day mostly sleeping and complaining. I got great care and the next morning they got me out of bed and sitting for breakfast. A couple of hours later I was taken to a regular room, but this time it was a kind of suite with a huge ante room for my son. I joked that before the 1st operation I’d said I wanted to be like the King. The King of Spain, Juan Carlos, had had a nodule removed from his lung just 3 days or so before my surgery and he walked out of the hospital after 3 days looking fantastic. So I figured the suite was because I kept saying I wanted to be treated like the King!

I had excellent care again and was really getting to know the nursing staff. On the 3rd day, Dr. G. Franco told me he thought I was well enough to leave the hospital, but did not want to pressure me. On the 4th day he again said I could leave when I felt like it, but I said I was not ready. I was much more “uncomfortable” than in the 1st surgery and much more reluctant to get dressed and walk around. However, on the afternoon of the 4th day, my son and I decided it was time to leave the hospital, and we would drive part of the way home and divide, in this way, the long trip back. We left the hospital at nearly 7 p.m., drove until about 11:30 p.m. where we stopped at a hotel in Guadalajara. I was scared and in pain and decided I was tired of being a hero and model patient, and that if the Dr. had prescribed medication for pain, I was going to take it! So the drive home the next day was more comfortable, but still hard: I think the fear factor was high.

We arrived home on Friday, 28th May, about 5 p.m. and I immediately went into a depressive state. I was taking the pain medication as prescribed, but was crying and feeling sorry for myself, feeling my body was no longer whole and in deep despair about my future, the loss of my husband. This state lasted for about 4-5 days and I could not see that my soreness and pain was improving. So I tried to get in control and told myself that unless I improved my state of mind, my body would not improve. I slowly started to feel better, both physically and mentally and began wanting to be a part of the world again. I got the staples out of the drain incision and that made me feel free and independent. I am still sore and uncomfortable at times, but am up and doing laundry, light housework and cooking and going for a daily walk. And best of all. . . .I am NED!

Ruth Ann Stoner Nieves
Spain




Ruth is no longer with us.  She won her battle against kidney cancer and will live on in the hearts of those who knew her and loved her.

July 2010: Scott McPherson

Featuring and Written By:
Scott McPherson

I had been in serious pain from my left buttocks to my heel but I was working 2 and 3 jobs. I didn't have time to go to the doctors so I was taking major amounts of over-the-counter pain killers just to function enough to work.


So this went on until May 2009, when i came home from work and couldn't walk because of the pain. I fell out of my vehicle, crawled into my house, woke my wife, Connie, and she hauled me into the doctor. They did a MRI and found 2 bulging disks in my back.

An easy enough fix, right? Well, they also found a shadow on my right kidney and they ordered a ct scan to follow-up. The doctor told me it was a tumor and they were very sure that the tumor was cancer; however, it was small -about the size of a tennis ball. They sent me to a specialist the following week. He confirmed it was cancer, but that it was grapefruit size not tennis ball size! After the initial shock wore off, we asked what was going to be our plan of attack? He told us I would need to return in a week to have my kidney removed surgically. So a week later, I was in surgery having my kidney removed. After 8 hours of surgery, I was minus a kidney, a rib and 2 lymph nodes. They also found out that besides having cancer, I also have a kidney disease called PKD (poly cystic kidney disease). Even though I had most likely beaten cancer, I was going to die of this disease but that's another story.
I was asked by my doctors to join a test group to test a cancer drug. It was to see if the medication would help keep my cancer away. So for the last year, I have been taking medications and having a check up every other month and a CT scan every 3 months. In June 2010, I had my CT scan and it confirmed that I continue to be cancer free - which makes me cancer free for a year!

It has been a long and hard road from the 2 months of surgical recovery, to trying to get my strength and weight back - I went from 205 pounds down to 148 pounds, to convincing myself and family members that I have beaten this, to just going on with my life as normal and doing the things on my bucket list - things I really want to accomplish before my time truly comes, to going back to work full-time only to have to find a new job because my boss (at the time) decided to replace me due to the amount of time I was off work.


So a year later, I am working 2 jobs again, sometimes doing 3 or more jobs, remodeling our house, trying to pay doctor bills (I had no insurance at the time I was diagnosed and had surgery. I was laid off from a job where I had insurance about a month before my cancer diagnosis) and just living my life.


By: Scott McPherson