November 2010: Carolyn White

Featuring and Written By: 

Carolyn White

I live in Illinois (farm country USA) and I still live in the same general area where I was raised – in fact, for 14 years I worked at the hospital where I was born! Married for 37 years to my best friend – raised two successful, beautiful, happy and independent daughters and now have one absolutely gorgeous and adorable little granddaughter. Lived a healthy lifestyle of exercise, running, eating healthy (vegetarian), no smoking, no weight issues. My faith has always been a part of my life but the last 10 years, it’s been a major part of my life. I have a wonderful, close and personal relationship with my God. He led me to join a medical mission trip to the Northwest Haiti (not earthquake related). My cancer was diagnosed right after I returned home from Haiti this spring.


For most of my adult life, I have had urinary tract infections. Last year, I noticed a difference in the pain…more intense, not responding to antibiotics. I asked to be referred to a urologist. My first visit was with his nurse practitioner who determined that I was now dealing with interstitial cystitis and began testing to diagnosis it. Initial test was an ultrasound, which showed an infamous “shadow”. They decided to do a CT scan, which revealed a tumor. I was diagnosed on March 31, 2010 and had surgery on April 9, 2010. They did a radical nephrectomy, removing my entire right kidney due to the location of the tumor. The pathology report showed that the tumor was Stage 1 (yeah!), Grade 3 (not so much yeah), Clear Cell Renal Cell Carcinoma, encapsulated.


The night prior to my surgery, my prayer group had a going-away party for my right kidney, at the request of my left kidney. We decided that the two had been lifelong friends (I was 54 at the time), and the left kidney would certainly miss its mate. Having a going-away party, was a better alternative to crying and worrying


The surgery was my only treatment and I just had my first set of followup scans (chest, abdomen and pelvis, with and without contrast), ordered by my urologist – the results were good – pushing me out to one year now. After surgery, I had to ask to be seen by an oncologist, who gave me great support and some information on living with a cancer diagnosis. I changed primary care physicians to one who follows me closely and listens to my concerns. I now have a doctor that I can call and ask questions – she is a God-send.


My recovery has taken longer than I anticipated. I think I got comfy with the idea of having the procedure done by laparoscopy. What I didn’t take into account was how much actual demolition was done on the inside. It was much more than my little 4 inch scar. I went back to my part-time job after only 3 weeks. I would not recommend it again. I wore myself out completely. One of the most frustrating things I face now, is intermittent lack of energy and extreme fatigue. Some days I wake up and have a decent energy level. Other days, I’m not so fortunate. It makes it very frustrating to try to make plans in advance. I’m a fairly active person so I think I just figured that I would pop right back from the surgery as I have done all other surgeries I’ve had. I had never experienced the loss of a major organ before so my expectations were out of line with reality. Something I am also dealing with now is lack of appetite – I thought it would subside shortly after surgery but almost 7 months later and I still don’t like food. I have spoken with a dietician and she gave me some great information for cancer survivors. In reading it, I saw that anorexia is sometimes a problem after a cancer diagnosis. And not just for those who have chemo or radiation. It made me feel better to know that it’s not just me. Who knew? One thing I am learning is that now anything is game as far as things that can go wrong. Not exactly Murphy’s Law, but staying on guard and alert.


Now, I always feel like I have some sort of specter hanging over me – my tranquility has been taken from me. Every new pain, every new bruise, every new lump – they all take on a whole new scary possible meaning now. Being diagnosed with cancer has made me appreciate each day- in September, we took our whole family to Disney World for a few days. We had a blast and everyone acted like a kid. It is their Christmas present this year (right…..LOL). My sweet husband and I enjoy each day together. We take more time to laugh and have fun. I also have six little furry angels that take good care of mama – I have rescued 2 pugs (one black, one fawn), and 4 cats (their purrs are the best stress relief sent directly from God above). I love animals, which is why I chose to be a vegetarian. My husband calls me Ellie Mae (for those of you old enough to remember the Clampett family).


I have taken advantage of a local Cancer support group, I visit with a counselor on a regular basis (her best advice was this “for everything cancer takes from you, find something to give to yourself”). I now take water exercise classes and yoga, etc. It helps reduce the angst of cancer. The Kidney Cancer Warriors support group has been wonderful. I feel comfortable asking all kinds of questions and know that I will get straight answers. I try to remain as positive as possible and am trying to figure out why this happened and how God intends to use this. My favorite Bible passage is Jeremiah 29:11 –“ for I know the plans I have for you, I have good plans for you, plans to not hurt you. I will give you hope and a good future” €

Carolyn White

October 2010: James Harris

Featuring and Written By:
James Harris

Hello, my name is James Harris.  My story is nothing compared to most of these warriors on this site; but, I thought I would share my story as I have gotten so much inspiration from others here.

I am a 39 year old father of 4 beautiful kids: my oldest boy is 11, another boy 9, a little princess 4 and my little man just turned 3. I also have the most beautiful and loving wife.

This all started on Easter Sunday 2009.  I wasn't feeling good at all. I thought I was dying.  I was just super cold and running a fever of 104.5. My wife called the hospital and they told her to get me to the emergency room. After many blood tests with results that were all way off, they did a chest x-ray and found my right lung looked to have a fungal ball. They did a chest x-ray and the doctor came in and told my wife to sit down. He said here is the story. You have only 1 kidney and it has a huge vascular mass on it that looks like it could burst at anytime. We live in a small town in Wyoming so they transported me via an ambulance to Denver which is 4 hours away.

I had a partial nephrectomy.  They took half of my kidney along with a 13 cm tumor which was diagnosed as clear cell rcc stage 3a, grade 3. I was in ICU for 6 days and in the hospital another 3 days. I had dialysis for about 30 days and then my half of a kidney started working.  All was good.

In about February 2010, I started feeling really tired and just not good at all.  I was going to the local hospital it seemed like every week.  They would run tests and say every thing was normal. Finally, my wife called my oncologist in Denver who is the greatest. She set us up with an internal medicine doctor who found that my FE sat was very low.  I did 2 weeks of Iron infusions and felt better for about 3 weeks. Then, I went in for my 1 year scans and they found another mass 3.6cm on the remainder of my kidney.  They did a biopsy and found it was recurrent rcc.

I had another partial nephrectomy June 16, 2010, and now I have only an eighth of my kidney.  I had a lot of internal bleeding and received 18 units of blood during my month stay in the hospital.  And I had an emergency surgery to break up blood clots and to control the bleeding. The nephrologists were getting ready to put a fistula in my arm and my wife was going to go through the 3 week training for at home dialysis; but, after a month, my little piece of kidney started working. God is great! I did alot of talking with him.  I told Him I did not like dialysis and he must have agreed with me.

Right now, all is good.  I'm watching my little ones grow up and enjoying all of God's creation.

Thanks for this wonderful site!

James Harris

October 2010: Mike Field

Featuring:  Mike Field
Written By: Debbie Field

Hi my name is Debbie Field, I am the caregiver/wife to my husband Mike. He is 48 years old and we live in Jacksonville, FL. We work together running a small construction company and a small 5 acre Horse farm. We have 2 beautiful daughters, ages 16 and 17, and we stay very busy trying to keep up with their social lives!


Our story really started before we knew it did. On December 20th, 2006, Mike fell off a ladder from the 2nd story of our warehouse and shattered his heel. He was 45 at that time. During the pre-op they did the usual chest xray and we were told that there was "something" there that needed follow up. He was sent for a CT scan where there were about 20 lung nodules. He then was referred to lung specialist that said this is definitely not lung cancer, so if it is a cancer we need to find out where its coming from. In January 07 he did a PET scan and we were told that the nodules were not active and there was no tumor anywhere and the spots were probably a benign lung infection. Recheck in 3 mos. In April 07 he did another CT, all "spots" were bigger, another PET scan and now they are active and they also remark how much the kidney tumor has grown since January. Apparently they just failed to note the kidney in January. Minor detail.

Tried a couple of biopsies, unsuccessful. Removed right kidney in 6/07 by laparoscopy surgery. Very easy recovery. Left hospital after 4 days. Pathology shows clear cell Renal cell carcinoma with small components of Papillary.

He began Sutent in 6/07 and stayed on it until 6/09. He had a really good response to Sutent and was declared in NED at one point. Then they reduced his dosage and things started to grow, so he went back up to 50 mg and it worked for another 7 - 8 months before failing. He had the usual white hair, hand foot syndrome, mouth sores at times, but really did most everything he wanted to do. As he got closer to the end of the 4 week cycle side effects got worse and then mostly subsided during the break.

After Sutent, he went to Afinitor for 2 months with no response.

He then went to Avastin/Interferon combo where he remained stable for 6 mos.

He then went to Torisel where he was stable for 6 mos. During the time on Torisel, we found a doctor that would offer him HD-IL2 and he began doing all of the testing to make sure he had clearance to start it and he did. The scan in July was a mixed bag, some growth, some shrinkage, and some necrosis. But we decided to go ahead with the HD-IL2.

He did his first 5 day round mid August. He gained an incredible 54 pounds in fluid, had some breathing issues due to the fluid accumulating in the lungs, rigors were pretty bad but passed quickly with Demerol, and had low blood pressures which they treat with fluids, but recovered pretty quickly during his week off. He was able to complete 12 doses out of the 14, but had to stay in the hospital for a total of 9 days while he waited for some of this fluid to resolve.

He went back for week 2 at the end of August. Immediately started with bad rigors and low blood pressures. They kept giving him extra fluids and after the 5th dose he went into Acute Respiratory Distress Syndrome and ended up on a ventilator for almost 4 days. And they stopped the treatment. He gained 35 pounds this time, still an incredible amount I think.

He will scan on 10/6 and we will find out if he got any benefit from it.

He is felling good now, and is pretty active. He has to take naps every now and then, but for the most part feels really well.

If you're on this journey, hang in there, it will be a bumpy ride. But everyday is different. The best thing you can do is to learn about this and take your health into your own hands. Don't settle for answers that you don't believe or don't seem right. There are a lot of people out there that have saved their own lives by being informed and proactive.

Hang in there and FIGHT!

Debbie Field ~ caregiver to Mike
Florida



Sadly, Mike passed his kidney cancer torch to those who continue to fight and earned his Warrior Wings on June 11, 2011.   He will be sadly missed by his wife, Debbie, daughters, family and friends.  Our condolences go out to Mike's family!

October 2010: Manuel Lopez

Featuring and Written By:  
Manuel Lopez

Kidney Cancer Fighter

Where to start?

Just the word cancer inspires fear in people, especially when someone we know is diagnosed with it. No matter if it’s a mild form of cancer or a full-blown diagnosis. Cancer strikes a dark fear in the heart of everyone.

My mother worked twenty years in the City of Hope, a national cancer research hospital. We always knew she worked with cancer patients and it was sad when Mom told us they had lost a patient. We would ask the usual polite questions people would ask though as youngsters, we didn’t really know what it meant to lose a loved one.

We had lost our grandparents but they were old and we were young. We weren’t very close because they lived far away and even though we knew them, we felt no sadness over their deaths. Cancer and death had no real meaning for any of us until we lost my sister Susy at the age of 36.

Susy was diagnosed with Hodgkin’s at 26 and had major surgery. Over the next ten years Susy would manage to fight off three other forms of cancer by using everything the City of Hope had at its disposal. They did everything from chemo to radiation to surgery. She went through several kinds of hell in the fights and always pulled through, until the fourth and last cancer got her.

Her sudden death came as a shock though Mom and Susy took great pains to prepare the family for what was imminent. Susy had been told by her doctors there was nothing they could do for her and so she should just go home and get comfortable. We lost her several months later.

Thankfully Susy was spared the usual painful death cancer brings. All she suffered was a sharp pain in the back of her head and she went to sleep. She died at one thirty in the morning surrounded by the whole family except Mom and Dad.

We kept her on life support until the family was gathered to bid her farewell. As they disconnected her, I held her wrist and whispered into her ear. Members of the family begged her futilely to please wake up. It took a full half hour for Susy to pass away. I held her hand he entire time.

When she finally passed I was her spirit on the other side, she of the bed. She stood looking at us, getting a last look before departing. Finally turned and walked into the wall. “She’s gone,” I said laying her hand on the bed.

It is still the worst day of our lives.

Cancer spared the Lopez family until the fall of 2006 when I was diagnosed with Renal Cell Carcinoma, or kidney cancer. I could do without such an honor.

Like Susy, it was sudden. I felt no symptoms or saw no signs there was anything wrong. Right around my fifty-fifth birthday, while in the bathroom I urinated a piece of what looked like meat. Naturally, it surprised me but as most people will do, I ignored it and went back to living and working. I did mention it to my wife who said I should see a doctor.

I didn’t have time or money to see any doctor.

Later that month, I was in the bathroom once again when it happened again. A pea sized chunk of meat passed and fell in the toilet. This time I pulled it out of the water and took a good look at it. In retrospect, I wish I had kept the sample for a biopsy. Anyway, I decided it was time to see the doctor.

Fast-forward two weeks when I went to L.A. County+USC Medical Center in Los Angeles to be checked. The doctor said to me “We are going to take out your kidney and check you for cancer.” Very clinical and very blunt.

The rest of the day is a blank. The twenty-five mile drive home is a total wash and I don’t recall anything until my daughter asked what the doctor said. I was sitting in shock. I am a problem solver so once the shock wore off I took to the internet to learn what I could about kidney cancer.

Even though Mom had worked in a cancer hospital and she shared stories with us, I didn’t know there was such a thing as kidney cancer so you can imagine the surprise. RCC is relatively obscure and is listed number six on the list of cancers. Therefore, when I found what information I could on the web, I thought I was going to die. This was fall of 2006 and virtually all the information I found was at least five years old. It was also scary in the sense there was nothing positive about treatments or survival.

To a point, it is still true today though there is much more updated information available now. Now you can find ACOR.org, the American Cancer Society and the Kidney Cancer Association. Thanks to other, more informed RCC patients, there is a lot more information for any new patients. Moreover, the information is up to date if you know where to look. Much of it is patient based through personal experience.

The hospital scheduled the nephrectomy for December 8, 2006. That date I remember. The days between the day of the diagnosis and the surgery have been erased from my memory and replaced with bits and pieces of going in for scans and tests.

The surgery went so well I didn’t even need a transfusion. It was a radical right nephrectomy to remove my kidney, the tumor and the surrounding lymph nodes. The tumor was contained so there were no metastasis to the area around it. It had however spread to my left lung.

The doctor told us there were three small nodules in the lower part of the left lung. He did it in a very cold way. Being a surgeon, he did his duty, announced the surgery went well and that I had three nodules in my left lung, turned, and walked away without another word. Glenda was beside herself because she wanted to hear they were all gone. It was not to be.

In retrospect, I wish we had had them removed then but hindsight is always 20-20.

After my recovery from the operation, we went to the City of Hope for treatment. We grew up near the hospital and were familiar with it. My mother and two sister worked there so we thought it was the best place to go for treatment.

It has an excellent reputation and we were hopeful they would be able to get rid of the nodules and life would get back to normal, or as normal as normal can be after having cancer. Again, it was not to be.

In the winter of 2007, we started HDIL-2. A toxic treatment that requires staying in the ICU for a week for a period of four weeks. The side effects were intense. I was forced to lay on my back 24/7 or the alarms would go off. When I sleep, I sleep so deep the alarm would go off telling the nurses I had died. I felt like the boy who cried wolf. Every time the alarm went off, the nurse would come running in only to be told by Glenda that I was just sleeping. If I turned to my side, another alarm went off.

That meant I had to stay on my back the whole time less the stupid alarm went off again. A real adventure it lasted five days until they gave me the last dose of HDIL-2.

After recovering from the HDIL-2, we started taking Sutent. The adjustment period was also intense due to the side effects. Fatigue, nausea and lack of taste were the worst but I got through it. In fact, I am proud to say that I was able to go through college for two years while taking the Sutent. Once I adjusted to it, it wasn’t so bad though the SE’s were no less intense. It’s amazing how much a body can take once it gets used to something. It has now been four years on Sutent. Actually, there was a three month long break from it.

The cancer had progressed in January 2010. The lung nodules were now in both lungs and were too numerous to count. I had enlarged lymph nodes in my chest.

The lymph nodes are located in the media stinum area right near two major arteries and near the heart. They are operable but very risky and so the oncologist hesitates to operate. He says the risks outweigh the benefits. Sorry but when you have cancer there are no real risks that outweigh the benefits. I just want the cancer out of my body. I digress.

This progression caused us to change from Sutent to Afinitor, another targeted therapy. It was much too intense for me to take. I supposed I am allergic to it as the side effects nearly killed me. I still have not totally recovered from them and have been vomiting and dehydrating. Physically, I feel fine except for some weakness and fatigue.

It seems that I have to nap three or four times a day for an hour each time. I just get tired. I also imagine the cancer is progressing and moving to do its thing, which is troublesome. Still, we are hanging tough, as is our motto.

It is very hard to stay strong. The support and encouragement of friends and family is probably the most important part of this battle. I doubt I would have made it this far without it. People tell me all the time I am an inspiration and a mentor. The truth is that I draw my strength from all of the comments I receive. Whenever I begin feeling down, I remember there are people looking to me for strength and so I have to forge ahead less I disappoint anyone.

Manuel Lopez

California




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

September 2010: Diana Lenartiene

Featuring and Written By: 
Diana Lenartiene

My Kidney Cancer Story

I am 63 years old, and have had kidney cancer diagnosed since 2001, when on August 16, I had a partial nephrectomy on my solitary left kidney. My right kidney had been removed in 1972 due to recurrent infections and urinary reflux. After my 2001 surgery, I was NED for nine years and then I had an ultrasound which indicated two tumors in the kidney. I was sent to a urologist who wanted nothing to do with something this serious, so he referred me to Gainesville, Florida's Shands Hospital where they have a nice, new cancer center.

They first thought they were going to do laparoscopic surgery, but that Dr. Said no way and had me see another doctor who does traditional open partial nephrectomies. By that time, they had discovered tumors in both lungs, so they had a tumor board meeting and decided on chemo.

I was sent to a third doctor who is my oncologist. He put me on sutent 50MG. Yesterday I finished the first four weeks and came out of it fairly well physically, with a little stomach, mouth and skin discomfort. Some days I was tired, but some I was the regular me!

I went back on July 30. They tested my blood and checked thyroid and uric acid levels. The acid was 1.4, but the doctor was not too worried about that. He told me I will have my CAT scan on September 13 when I also see him again. I am now halfway through my second course of Sutent.

I have been very grateful for the help and support I have received from Dick, Leigh, Allen, Pam and Sheila on the Kidney Cancer Warriors chat. It is so scary to be new to this and have no idea what to expect.

I have retired from my wonderful teaching career to fight this demon, and I WILL fight the good fight and do all that I can to help my body overcome these tumors and at least keep them stable and not growing or spreading.

On a humorous note, the only side effect I did not have and would have liked was weight loss! Only two or three pounds. Maybe on the next dose? I started dose 2 on July 26, and as of today have lost only seven pounds since the beginning of my treatment.

Thank you for reading my story.
Diana
Florida

Foxy

September 2010: Linda Gaulke

Featuring and Written By: 
Linda Gaulke

Hi…my name is Linda and this is my kidney cancer story.


If you are reading this story, I’m afraid it means that you or someone you love has been diagnosed with kidney cancer. If that’s the case…I’m sorry you have had to join this family! We lift you, and those around you, up in our prayers!

I am not new to the cancer rollercoaster as my father battled cancer (including kidney cancer) for many years prior to his passing in 2008. My paternal grandmother died from kidney cancer (RCC) at the age of 86. My cousin was recently diagnosed with stage IV breast cancer. I guess it’s my turn now.

I’m so fortunate to have a great deal of support from my son, family and friends, in addition to great bosses. My friends and family have, and continue, to walk this journey with me! I know God has blessed them and me! I had a friend tell me the other day, “We are going through this with you”. I knew how much this affected my family but didn’t really understand the impact it was having on my friends and coworkers. I’m a firm believer in a positive attitude as well as laughter. My sister and I have decided to name my cancer “Igor” as it is ugly and it needs a master! I am the master of this disease!

My story began in the fall of 2009. I experienced a sharp stabbing pain in my stomach when I was exercising. I thought I had pulled a muscle as the pain went away. However, throughout the fall and winter, the pain would come and go. In May 2010, my son and I took a road trip to San Antonio to celebrate my 50th birthday. On my birthday, we went to the Alamo and as we were touring the grounds the abdominal pain returned. The pain was so bad I had to sit down for awhile to let it ease up before I could continue the tour. After this trip, the pain seemed to come more frequently and last much longer. Memorial Day weekend the pain became chronic. The pain was so bad it would make me stop in my tracks and at times felt as if someone had stabbed me with a knife. I decided it was time to see a doctor as I knew it wasn’t a pulled muscle.

On June 14, 2010, I went to my doctor and he immediately ordered a CT as in his words “you don’t complain about pain so I knew something serious was wrong”.

On June 17, 2010, I arrived (alone) at the hospital for my CT. The scan was being performed by someone who used to work for me. I asked him how long it would be before my doctor received the results. He told me it would take about two days. The CT was completed and he told me he needed me to wait as the radiologist was going to read the scans. A while later, he came out and told me the radiologist had read my scans, had spoken with my doctor, and my doctor wanted me to go to his office as soon as possible. I knew it was bad and I called my son so he could go with me to the doctor’s office. When we arrived at the doctor’s office (1.5 hours after the scheduled time of the CT), the doctor told me they had found a 12 cm tumor on my kidney; they believed it was cancerous and he had scheduled an appointment with an Urologist for the next afternoon. I immediately called my bosses and they told me to take as much time as I needed. (I am so blessed to be working for these men!) I then needed to tell my mother. This was probably the hardest as she is 81 and had watched my father die of cancer just two years prior to my diagnosis. She maintained a brave front for me.

On June 18, 2010, I met with the Urologist. He showed me the CT picture and told me I needed to have my kidney removed within the next seven to ten days. The surgery was scheduled for June 25, 2010, and I started the battery of tests needed prior to surgery. I was in such shock. Was I going to die? How long had I this tumor? Would I need chemo? Would I lose my hair? Had it spread?

On June 25, 2010, my Urologist performed a hand assisted laparoscopic radical nephrectomy on my right kidney as well as cleaning up some surgical adhesions. The tumor was 13 cm and was stage II grade II. The Urologist told me there was a 62% chance the cancer wouldn’t come back and he thought I should participate in a clinical trial that was being offered through the cancer center. I’ll never know whether the cancer or the adhesions caused my pain…whichever one it was I am thankful for that pain. I was in the hospital for 3 ½ days. About 2 days after getting out of the hospital, I started having severe abdominal pain and on July 5th the pain was so bad I ended up in the emergency room. Another CT showed some darkening in my abdominal area and the doctor thought I might have some inflammation of the mesenteric flap. It was later determined I had torn my rectus abdominis muscle. I was told there wasn’t anything that could be done for it and I could expect at least 2 months for it to heal.

On August 4, 2010, I met with the Oncologist at the cancer center. He stated due to the size of the tumor, he wanted me to have a PET scan to determine if the cancer had spread; as when a tumor is as large as mine, it sloughs cells. He said after the results of the PET scan were received, we would talk about either the clinical trial or treatment whichever was appropriate.

On August 11, 2010, I had the PET scan done and on August 12, 2010, I met with the Oncologist. The results of the PET scan showed no evidence of disease (NED). The decision was made to attempt to obtain acceptance into the clinical trials; however, we were under a time crunch as the doctor was going on vacation and the trials closed for new participants on September 1, 2010. The clinical trial is being done to determine if Sutent and/or Nexavar should be used to prevent the recurrence of kidney cancer. These drugs are currently available for those with metastasized kidney cancer but there isn’t any protocol in place to prevent the recurrence of kidney cancer. There are three ARMS to this trial: one receives the Sutent; one receives the Nexavar and one receives a placebo. Although placebos aren’t normally a part of cancer clinical trials, they are vital in determining whether these drugs can be used to prevent recurrence. That said, there is a chance I’ll receive a placebo, but I feel I must participate in the trial. Hopefully, to prevent my own recurrence; but, I am also hoping this trial will result in medications for prevention not just treatment of metastatic disease.

On August 12, 2010, I received notice that the Oncologist was going to call the clinical trials on my behalf. Later that day, the cancer center contacted me to come in as I needed to get the informed consent paperwork completed that day. With the informed consent in place, things started moving quickly. I was scheduled for another CT and a MUGA scan, which will occur on August 24, 2010. (For those of you who don’t know, a MUGA is a Multi-gated Acquisition scan of the heart. This test is done to make sure the heart can handle the medications.) On August 27, 2010, I received notification that I had been accepted into the clinical trial and on September 7, 2010 I will start the medications.

I have been very lucky and blessed to have met some amazing people during this journey. I have never met a stronger group of people than those I’ve met through Kidney Cancer Warriors. God bless you all! I’m not sure I could have made it through this without your support. To those of you who are caregivers, family members and friends of someone who has cancer, you are amazing people and your support is so important to us!

And so my journey continues! I know this will be a long journey and one that could involve travelling through many peaks and valleys. I am strong in my belief that God has placed me on this path for a reason. I WILL defeat this cancer!

Linda Gaulke
Colorado

September 2010: Chris Battle

Featuring and Written By: 
Chris Battle

Chris Battle's Story:


“You’re cured – just kidding.”

Well, this is nearly what I was told after I was first diagnosed with kidney cancer in March of 2009. Let me tell you something: If you’re urologist swaggers in after performing what he or she know doubt considers a brilliant surgical operation to remove your kidney and tells you “I got it all, you’re cured” – then you should run. Or wait until your stitches heal, and then run.

Like many people with kidney cancer, I had no idea that this evil little growth was setting up house in one of my organs. It had been growing and expanding, crowding out my entire kidney for years. Eventually it began to push on other organs and started causing excruciating pain in my side. It was like an angry little bastard elf was squeezing the juice out of my appendix. Indeed, like my primary physician, I assumed the pain was appendicitis. At the hospital, after I had ingested a colorful array of pain meds, the emergency room physician calmly informed me: “The good news is that you do not have appendicitis. The bad news is that you have a tumor the size of my fist in your kidney.”

He held up his fist; he was a very large man.

It would turn out that the tumor was more than 11 cm in size and grade 3 on the Furman Scale - clear cell renal carcinoma. I was immediately rolled into the operation room, where they performed a radical nephrectomy.

After the surgery, when my urologist told me that I was cured, I didn’t know any better. Like so many others who have been in that same situation, I breathed a sigh of relief. In the follow-up consultation after the surgery, he told me that I had nothing to worry about, that I should come back in six months and he’d do an x-ray but to otherwise forget about cancer.

So I went home. Of course, I didn’t forget about cancer. I did what every doctor tells you not to do: I went online. And what I discovered was disturbing.

In defense of the doctors -- there are all kinds of statistics you should ignore. The sometimes grim statistics you’ll see online, often based on studies years out of date, do not account for the remarkable research advances that have occurred in the past several years resulting in a variety of new treatment options for kidney cancer. And “median” stats about survival rates are wildly inaccurate on the individual level. I know survivors who’ve been around for years and years when the “median” suggested that they should already be gone.

On the other hand, if you are careful about where you get your facts, you can learn a lot about this disease. You can learn about treatments and how to become an advocate for yourself. For example, what I learned was that my urologist had no bloody clue as to what he was talking about.

The first thing I learned is that there is no such thing as a cure. There is the hilarious acronym “NED,” which stands for “No Evidence of Disease.” (Or maybe it’s the name of my overweight uncle from Decatur, I can’t remember.)

The second thing I learned was that I had a roughly fifty-fifty chance of a recurrence.

My wife, Dena, and I set out to find a new doctor. In the meantime, we took it upon ourselves to learn as much about Renal Cell Carcinoma as we possibly could, especially the different treatment options available. This way, when we next encountered a doctor, we’d be better prepared.

The oncologist we saw agreed with us that – based on my tumor’s pathology – I should be undergoing CT scans every three months for the first year. And wouldn’t you know it, on the very first scan they found mets in the lungs.

Let’s talk about bedside manners for a moment.

When we arrived at the oncologist’s office to review the results of my scans, the oncologist himself didn’t come in. His physician’s assistant (PA) did. He asked me if I’d had a cough or any trouble breathing lately. I said no.

“Oh,” he said casually. “Well, you have tumors in your lungs.”

Dena and I were shellshocked. We just blinked at him for a moment. It was an awkward silence that the PA did little to ease. He just blinked back at us. After the silence became unbearable, I asked what he recommended as our next step.

“We need to get you set up on chemotherapy,” he said.

Dena, by this time armed with her Google degree in oncology, nearly leapt out of her chair and stabbed him in the eye with a pencil.

“No,” she said stonily. “Chemotherapy doesn’t work on kidney cancer. I want to see Dr. Smith. [Yep, names have been changed.]”

“I’m sure this is all a shock,” the PA said. “Why don’t I give you two a few minutes to digest this news.”

“I don’t need a minute,” said Dena. “I need Dr. Smith. Now. Go get him.”

I think the PA was a little scared by this point, and he should’ve been. He left the room, and after a while Dr. Smith entered.

He informed us that I had two significant mets (metastasized tumors), one in each lung, along with a shotgunned collection of smaller mets spread about both lungs. It was, he said, inoperable. (It would turn out that he was wrong.)

Dr. Smith was better prepared than his assistant. (Maybe he’d been warned about the crazy couple in Room 3.) However, he wasn’t as prepared as we would have hoped an oncologist would be. He wanted to start me on Sutent immediately. We knew from our own research that this was not the right course of treatment.

We had come to learn that there is only one treatment at this time that can provide a “complete response” – meaning eliminating all of the cancer in my body. This treatment is known as High Dose Interleukin 2, or IL-2 by shorthand. We also knew that taking Sutent would undermine our ability to undergo IL-2. We were thus a little nonplussed by our doctor.

Thank god for Dena. I was still of the mindset where I would have simply said, “Okay, you’re the doctor. You know best.” Dena isn’t quite so passive.

“What about HDIL,” she asked.

Another one of those blinking awkward moments of silence.

“High dose interleukin,” she said.

“Oh, right,” Dr. Smith said. “I thought you said HTIL.” Another pause. I could feel Dena’s eyes burning a hole in his skull. “Well, that is very hard on the body, very hard. And it has a very low percentage of success.”

Our confidence level in our latest doctor began to sag. Low percentage of success or not, we knew that I was a perfect candidate for the treatment. Not everybody is a candidate. It is indeed a difficult treatment that can result in severe side effects, including death if not administered properly, but as a relatively young (42) man in good shape and no health problems (uh, besides cancer), I may as well have been listed in some IL-2 textbook as “ideal candidate.” And we wanted to do it. Our desire was not to “extend life” but to eliminate cancer. I wanted NED, man – whether NED is a funky acronym or a fat man with healing powers, I wanted NED.

And so we found ourselves on the hunt for another doctor. Again. This time, we would seek out a renal cancer specialist. We found just the man we were looking for in the form of Dr. Dan George of the Duke Comprehensive Cancer Center. He was not only familiar with IL-2 but was a researcher on the cutting edge of new potential treatments for kidney cancer. Equally important, he had a fantastic bedside manner and exuded optimism. He immediately agreed that I was an ideal candidate for IL-2 and that we should go for it. Sutent would always be there waiting for us if it didn’t work.

I have now gone through three rounds of IL-2 and, as predicted, it has not been an enjoyable experience. Three “rounds” are actually comprised of two one-week treatments – so a week in the hospital, under intensive care conditions, then two weeks for the body to recover, then another week back in the hospital followed by two weeks of recovery. I have written extensively about experiences with IL-2 on my blog, which you can find at http://www.caringbridge.org/visit/chrisbattle.

Despite having absorbed more than 50 doses of this toxic concoction into my body, I have not achieved a “complete response” – and the holy grail of NED. However, I have had a partial response that has eliminated the smaller mets in my lungs, and this has opened the possibility of lung surgery to remove the two larger mets. After we review the next round of scans, we will make a decision on whether to undergo surgery. It will be a challenging process, as it will require two separate surgeries – opening up one side of the chest to resect the tumor from one lung, then doing the same thing for the other side. Asked why we couldn’t do it all at once, my oncologist said, “Hey, you gotta breathe, right?” Good point.

We’ve come a long way since the day more than a year ago when my urological surgeon told me that I was cured. Had we listened to him, it is possible that we would not have caught the metastasis until it was too late. Had we listened to our first oncologist, Dr. Smith, it is possible that we would have gone on Sutent immediately and not had any results while the same time eliminating IL-2 as a treatment option.

Today, it is possible that, after the IL-2, and if surgery is successful, I will reach my goal – No Evidence of Disease.

It has been a difficult – at times painful, at times confusing and at other times scary – two years. However, if NED comes knocking on my door, it will have been worth it. I plan to let that crazy bastard in, and I am hopeful he will stay a long, long time.

Chris Battle
Alexandria, Virginia




Chris is no longer with us here on earth.  He won his battle against kidney cancer by the way he lived his life.  He will always be a strong voice within the kidney cancer community. He will live on in the hearts of those who knew and loved him!

Dena and Josie

 
 

Kate and Josie

 
 

Chris, Dena and Kate