April 2011: Jay Hyman

Featured and Written By:
Jay Hyman

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

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

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

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

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

Jay Hyman

April 2011: Allison Rodgers

Featured and Written By:
Allison Rodgers

Me before kidney cancer

Me and my daughter after surgery and Sutent

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Moon Pie Race Tenn 2009

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

 

My daughter Melinda and her fiance Mark

3 months after surgery and before Sutent was started

April 2011: Craig Frey

Featured and Written By:  Craig Frey

Craig and Cathy Frey

February 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

Craig's Family - October 2010

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

March 2011 - John Armour

Featured and Written By:

John Armour

The Livestrong Bike Race in Austin, Texas

I have read many of your kidney cancer stories and somehow don’t feel that my story is of equal significance to most of yours, but this is my story, such as it is.

My name is John Armour , I am 58, have been married, to my wonderful wife of 35 years , with two great children, and two grandsons.
I had a pretty normal life until I went to our local hospital to have a scan done for a possible gallbladder problem. I was busy the day the scan was scheduled and almost cancelled, but decided to go. As I was leaving the radiology department, I passed the cancer center, and distinctly remember saying to myself,


“There but for the grace of God, go I”. Little did I know my life was about to be forever changed.

About three hours after the scan, my internist called me to tell me that my gallbladder was OK, but that a mass had been seen on my right kidney. I had no symptoms of RCC whatsoever. I had just two weeks earlier completed a complete physical and gotten a clean bill of health. The scan report I received indicated that an oncocytoma was possible, but kidney cancer was also a possibility. “Kidney cancer…What the hell is kidney cancer? I’ve never even heard of kidney cancer”, but apparently I had it. I couldn’t decide whether to cry or scream. I was mad at myself for getting cancer and trying to wrap my head around a cancer diagnosis was horrific, as I had lost my Mom to breast cancer when I was 18.

My wife and kids were all I thought about. I figured I was history. I immediately sought out a psychologist and began trying to sort things out. I began calling anyone I could find that could help me understand my diagnosis. I spent weeks online mining for any nugget of information regarding kidney cancer that might shed light on my diagnosis. (Actually, I was searching for something that would tell me I was going to be OK, but I never found it.) I read every abstract I could find on RCC. I found numerous nomograms that I have printed and kept, depicting recurrence rates, mortality rates etc. I found the SEER data on RCC. What the heck is SEER data? I have found and read articles on IL2, angiogenesis, VEGF, and MTOR. Before my diagnosis, I knew nothing of any of this, but I can’t say that now. I spoke with Jonny Omdurman of Imermans Angels, Jay Bitkower of ACKC and Bill Bro of KCA, and they all helped me to understand that I had a fighting chance. This was more than many people diagnosed with cancer have, and I decided that this was the foundation upon which I would build my new life.
I met with a urologist at our local hospital, and he indicated that the 5.5 cm mass was most likely a Stage I tumor. He indicated that he had some experience with RCC and that I would probably be OK. I considered staying at our local hospital for the surgery, but eventually decided to go to a cancer center, in downtown Chicago, Northwestern Memorial, to have the surgery done. My urological surgeon, Dr Norm Smith, explained that he had performed over 350 kidney cancer surgeries and that my particular case did not look difficult, since the mass was relatively small. He actually asked me to think about an open surgery as he thought he could perform a partial nephrectomy. He indicated that I would be a good candidate for a neo-adjuvant trial using Sutent. He thought it might shrink the tumor to make it easier to have a partial nephrectomy, but I decided to have a ( hand assisted) laparoscopic procedure, removing my entire right kidney. I wanted the kidney and the tumor OUT. I thought that if I had a partial that a possibility existed that some of the cancer cells would remain and therefore the whole kidney had to go. Post surgery the doctor informed me that he did not remove the adrenal, and took only one lymph node, but would not have been able to save the kidney due to the location of the tumor. The margins were clear and the lymph nodes were negative. It was at this time that he also disclosed the tumor, which had pre-surgery been staged at I, was actually a Stage III because a few cells from the tumor had been found near the mouth of the renal vein.

On April 1, 2009, I received the official diagnosis, which is Stage 3, grade 2, NOMO, 5.5 cm, clear cell.
Dr Smith offered the ASSURE trial as something I might consider. I spoke with two friends who are in the pharma industry conducting clinical trials, and watched a video from MD Anderson, with Dr Chris Woods. Dr Woods indicated that most of the adjuvant trials actually showed that those receiving the placebo arm actually fared better, than those on the tested therapy. After a lot of soul searching, I decided to sign up for the trial. I went to sign up for the trial on a Friday and was scheduled to have Muga scans , additional CST etc, all as precursors to starting the trial. I was scheduled for testing the following Wednesday. On Tuesday morning I received a call from the Oncology Department at Northwestern Memorial Hospital. They informed me that the testing had been cancelled as the ASSURE trial had been suspended and would not be re-initiated until after I had matured past the post surgical cutoff, date. Both my wife and daughter pointed out that God had pushed me to get scanned, where I received an incidental finding. They then followed up with the thought that God didn’t want me on the ASSURE trial. Coincidence? I don’t know, but I do feel that I have been put on this path for a reason.
I was scanned, CTS, chest/abdomen, at 3 months post surgery and was declared NED. I was rescanned at 9 months and NED was once again the diagnosis. About this time my oncological surgeon, Dr Smith decided to leave Northwestern Memorial and go to University of Chicago Cancer Center. Before he left, I met with him one last time to review blood tests. During this review we were going over the pages of questions that I always have, and while answering me he said ”John, I don’t think it’s coming back, I’ve seen lots of these and I don’t think it will be back”. I guess this was his parting gift to me. I pray to God that he‘s right.
While researching, I found “Anticancer” and decided to modify my diet. That day I gave up red meat, sugar, gluten, alcohol and dairy. I also read that aerobic exercise is beneficial in holding cancer at bay, so I dusted off my old racing bike and started to ride. I have always been pretty athletic. I played high school and college football in the late 60s and early 70s. I then found triathlons in the early 80s and competed in tri’s for about 8 years, so cycling was an easily accessed avenue for both physical activity and psychological focus.
Since I started my new diet and long distance riding, I have lost 40 pounds and my physical condition is pretty good for an old guy with one kidney. I was contacted by Mike Terry another RCC survivor and he introduced me to CCC, Cyclists Combating Cancer. I joined almost immediately and found that Dr Youner was also a member. I also joined Livestrong and have worn my yellow wristband since the day I got it. In August of 2010, I rode the Livestrong Challenge ride in Philadelphia, PA. I planned to ride 100 miles through the rather daunting hills around Philly. It was raining buckets, but we rode. I was riding with two of my CCC friends, both much younger than myself, but both survivors of testicular cancer. At about 60 miles into the course, we were descending a very steep hill in the rain and my brakes failed. I crashed into a ditch at about 30 MPH. I was ambulanced to the local hospital where they stitched up my face in a couple of places and did a CT of my head looking for a brain bleed. They didn’t find anything remarkable, which was great news, and I now had a baseline of my brain. I made sure to get copies of the scan along with the report, which were given to my new oncologist, Dr. Kuzel. I returned to the start/finish area where my bike had been dropped off, post crash. It was still raining, I had lost my helmet, my face looked like I had been on the losing end of a bar fight, and I was almost in tears because I couldn’t finish the ride. As I was packing my car, I was approached by a woman, a breast cancer survivor. She asked what happened and I told her my story. She took my arm and said “You’ve got to finish for yourself and the rest of us." At that point I put my cleats on and rode my bike out to the finishing chutes. I entered the chutes battered and bruised with tears in my eyes. I finished. At our team tent I found the two friends who had continued without me after my crash. They were happy I was OK, but I told them “Now I’ve GOT to ride Austin. “
I signed up for the Livestrong Challenge, Austin, the following week. In CCC, I also found a marvelous friend, a breast cancer survivor, Cindi Hart, who invited me to participate in Spokes of Hope, in Indianapolis. I went to Indy in September and we rode about 35 miles, but more importantly, we spent the day at the cancer center of the U of Indiana, meeting with other cancer patients and survivors. We discussed the fear, the anger, all the emotions that accompany cancer, in any form, with the people we met. We also carried a large banner that we asked everyone to sign. The Spokes riders would ultimately take the banner to Washington DC, where it would be given to members of Congress, after listening to us ask for more funding for cancer research. The entire Spokes of Hope ride, from Indy to Washington, was filmed. At one point, I was asked by the film crew about why I ride. I told them that I ride for those who rode before us , but are no longer with us, and those who can’t ride today. I also told them that my psychologist once told me that my bike was a better therapist than he could ever hope to be. I somehow have this crazy idea that if I ride hard enough, fast enough, the cancer won’t be able to catch me again. Sounds crazy, huh, but it helps get me through the day.
October came around and my wife and I travelled to Austin, Texas, where we met a large contingent of CCC riders. It was raining on the Saturday before the ride on Sunday, and I was very apprehensive about riding in the rain again. Fortunately, the rain stopped on Saturday and on Sunday I was ready to ride. Lance Armstrong and the whole Radio Shack team led out the ride. It was great. My CCC teammates and I started the ride knowing that some would ride short distances and others would ride 90 miles. I needed to go 90 miles for myself. I rode about 5 ½ hours, through the rolling hills around Austin, and made it to the finish area, where I was met by my wife, amongst the cheers of the crowd. She gave me a yellow rose which is given to all Livestrong finishers who are also survivors.

I had scans on December 7th, and “Thank God” once again was declared NED. The new NCCN scanning guidelines dictate that my scans will be extended to annually for my chest (CT) and every two years for my abdomen (MRI). Blood work and an office visit will remain at every six months. My next abdominal scan (MRI) is scheduled for late August with a CT for my chest in early December 2011. This is a bit scary, waiting for so long to be scanned, but Dr Kuzel is an RCC expert and I have faith in his judgment. I hope it’s not unfounded.
I am a kidney cancer mentor for Imermans Angels, and will continue to ride Livestrong Challenge rides, hopefully, for many years to come. I have already signed up to ride with my CCC brothers and sisters in Austin, in October 2011. I am seriously thinking about Philly next August. I will also plan to participate in the 2011 Indianapolis “Spokes of Hope” as well as launching a “Spokes” event in Chicago.
I thank God daily, for my family, my health, and all of you, my kidney cancer brothers and sisters, as well as all of my CCC teammates.
I wish you all healing and happiness.

John and his wife

John and his wife



February 2011: Tony Grainger

Featuring:  Tony Grainger

Written by: Teri Grainger

"Teri, Tony, and, oh yeah, kidney cancer"

Teri and Tony

Tony Grainger

I am writing this about my husband Tony, he doesn't type too much lol. He is just an awesome man and I think everyone should know. I would like more RCC patients to be aware of HD IL-2...so if you have metastatic disease, please read.

I met Tony at Ford Motor company, where we both work. I asked him out on a date. I later found out that he was "supposed" to ask me out weeks before but never could work up the nerve. We started dating and just had a lot of fun together. Our first date was at a club with some friends of mine. I bought him a drink. I didn't realize that he had been cutting back and had been a very heavy drinker. I found out later just how heavy a drinker he was .... I had no idea. Gradually, throughout our dating he drank more and more. One day I came home and he had drank a big bottle of wine (the double size bottle). He was grumpy grumpy grumpy. I told him that I was NOT going to be one of "those" women and if he didn't stop drinking NOW, he needed to move out and find another girlfriend. Tony drank the rest of the night and then did the unthinkable the next day ... he checked himself into rehab. That was 12 years ago. He hasn't drank since. Not one drink. We were married Dec 11,1999. I tell you that little story to show you what a strong man he is, what a fighter he is and what he would do for me. I love him more because of that.

Move ahead to December 2006: Tony had a few days every month where he would just feel bad and get a high fever. Sleep and ibuprofen would make him feel better. One day he his urine was a dark rusty color. Just once. He went to the doctor and the urine sample had no blood. Of course, they didn't do anything except send him home. He was having back pain for the next 5 months. They did an MRI and it showed a herniated disc in his lower back. He was going to a homeopathic doctor that was doing deep massage, Reiki, etc for his pain. They never suspected cancer. One day he had a headache, NOT just a normal headache but a pain so bad in his head that he could NOT stand it. He was in a fetal position on the couch with a pillow over his head begging for it to stop. I made him take a Vicodin (he won't take pain killers since he stopped drinking, they make him very moody.) The headache eventually subsided. This same week I bought him Lance Armstrong's book "It's not about the bike: My journey back to life". I don't know why I bought it...CANCER was NOT in my mind at all. It is an awesome book..it helped me a lot. Lance also has this excruciating headache.

At the time, I was working with some people that know Tony. Friends of his were always asking about him. I started telling them that he hasn't been feeling well, that his back and legs hurt. One day, Tony had stopped by my lab the day before and my friend Matt and I were talking about him. Matt said Tony didn't look too good. I told him Tony has BEEN looking bad, he looked thin and gray and had dark circles under his eyes....I said "Tony looks like he is dying".......I will never forget that I said said THAT. This too shall pass...I thought.

THAT day after work I went home. Tony called me and asked me to come get him from the doctors office.  He said his legs hurt so bad he could hardly walk and he didn't think he could drive. He said "I feel like I've been running up stairs ALL day long". I brought him home, had him change into some comfy clothes, gave him some meds and a soft drink.  I went outside to stain the outside of the hot tub since I was having a BIG graduation party for Tori, my oldest daughter in June. Right as I started to open the can of stain, Tony came outside, pulled his sweats up and asked me if THAT was normal. I said NOPE. His right knee was swollen and you could see TONS of dark purple blood vessels sticking out of the side of his knee and thigh, it looked like a map. I went in a got a measuring tape. His right knee was almost 2 inches bigger then the left. I said "Ohhhhh I think you have a blood clot..come on baby, lets go to the ER". He said "NO, I just laid down and I'm comfy". We argued about it for a few minutes. ughhhhh I didn't know what to do, I HATE to go to the hospital for nothing, you know what I mean?? go and wait and wait only to get sent home because there is really nothing wrong. I called my friend Karin, in Switzerland. (She used to live here, and we're great friends) She works in the therapy/medical field.  I told her about Tony's knee and veins. She said "Teri..you must take him now or call the ambulance!!" SO I told Tony "either you come WITH me or I'm calling 911 and then you WILL feel silly IF it's "just nothing".

The hospital immediately put him in a wheelchair and did some blood work. It was a LONG wait. They admitted him. May 10, 2007. They came in and told us he was anemic, which they said was weird..men aren't usually anemic. They gave him some pain meds and were waiting until morning for a doctor. I told the nurse to have the doctor call me. Tony's leg was WAY bigger now and he was looking worse. Like he was dehydrated and starving to death. The doctor called, I told him that Tony needed some nutrition or fluid or something. "you can't just let him lay here and die". They went ahead and started IV fluids. They did more blood work the next day and Doppler's and ultrasounds. His leg was HUGE. It was so huge he had to drag it when he walked. They eventually wouldn't let him get out of bed at all for fear that the clots would go to his lungs or brain. I watched as they did the ultrasound. I could see that the blood was NOT pumping in his thigh or groin. The tech was nervous as she was moving the probe higher up into his groin and still wasn't seeing any blood flow. That is when they sent him for a CT scan. Hours later, Tony was sitting up in his bed eating and we were laughing about something when the doctor came in. He asked me if I minded stepping out of the room with him. I kept thinking "This too shall pass...this too shall pass." I looked at Tony and he just shrugged I think and kept eating his lunch. We walked out of the room and he wanted me to follow him to THE little room where doctors talk to families. Where doctors tell families BAD news. I did NOT want to go in that room with him. I didn't want to hear what he was going to tell me. A MILLION things went through my mind when I was following that doctor down the hall. "Tony's going to die, they are going to amputate his leg, why doesn't the doctor talk to BOTH of us? He's going to die, He's going to DIE" I sat down and the doctor was very nice but he looked nervous. All I remember is He said " your husband has a very large mass in his kidney.....(pause) .....it's cancer". Ummmmmm I don't really know what else he said...something about Kidney Cancer survival blurrrrrr.....My brain stopped working. We walked into Tony's room, I was BAWLING and of course Tony knew something was wrong. I will always remember that Tony was just sitting there eating and looking pretty happy. We walked in and had to tell him that The world as we knew was about to change. The doctor told him. He took it better than I did. I know Tony's nervous look and he had it! I hated it for him, for me. This too shall pass!  I hugged him so tight. I just wanted to keep hugging and never let go. A urologist that performed MY kidney stone surgery a year before came in and said they were transporting Tony to University of Cincinnati medical center.

They couldn't do the surgery right away, they had to get his leg smaller and his blood flowing. The doctors told us his tumor was so big that it was growing out of his kidney into his vena cava vein and causing a dam, his blood couldn't flow into his leg and now his leg has huge blood clots. He was diagnosed with Deep Vein Thrombosis (DVT) and also some blood clotting disorders, "Prothrombin Mutation" and "Factor V Leiden". He will always have DVT problems in his legs and still has to be careful. His surgery was May 18, 2007. An oncology surgeon and a vascular surgeon performed the surgery. It was about a 7 hour surgery. A radical nephrectomy. They also put in a filter to prevent blood clots from going into his lungs or brain. They stated that his cancer was "clear cell, pT3b". Stage III. His primary tumor was 11x9x5cm in the lower pole with lesions in the mid and upper poles. The tumor extended into the renal vein and muscle branches and vena cava below the diaphragm. He woke up from surgery wanting to die. He begged me to unplug his machines. He begged for more pain killers. I couldn't stand to see him like this. I cried a lot. I have 2 children, he has 3. They were there. This was so hard for our kids. They were 15, 16, 17, 18 and 19 years old. His daughters came up from Tennesee. Everything was tough, this was such a hard time for all of us.

I still don't even know if there was an adult at our house while we were in the hospital, I just don't remember. Everything was just a blur. He developed an infection in his incision. They had to open it back up and put a "wound vac" on, he had to wear compression stockings for his legs. I blocked some of that from my memory so I can't tell you some things. I do that when bad things happen. It's easier for me that way! He was in the hospital a long time. He was discharged May 30,2007. I had our friends pick up and set up the tent and tables for Tori's graduation party that was scheduled for the Saturday after Tony's discharge. I paid someone to take care of our lawn. My sister helped a LOT! I remember just crying my eyes out. I needed to pull the weeds from my awesome garden around the pool and hot tub; but I couldn't leave Tony and didn't have the energy, if I could. My sister came to pull them, she laughed because she said there were only like 4 weeds in my whole yard. I was just overwhelmed. This too shall pass!  The party was a hit! Tony walked outside and said Hi to everyone. All of my family and friends were so glad to see him. He stayed on the couch for weeks and weeks. He was having horrendous leg cramps EVERY night because of the damage the Deep Vein Thrombosis did to him. It was terrible. Putting those TIGHT compression stockings on him hurt his swollen leg and just made me cry! Will this EVER pass??  I was off from  work without a paycheck and Tony was on medical leave. Needless to say, our savings account dwindled down to zero! But we had each other. A few family and friends helped some. Thank God for our retirement savings plan that we had both always invested in or we would have lost everything! This too shall pass...and why worry about our retirement if we need it to survive now...right?

I had to "pack" his incision with gauze and clean it twice a day. This wasn't a regular incision, it was a huge gaping hole in his abdomen. It took everything I had to clean and dress that daily and give him Fragmin injections twice a day. I put those DAMN tight stockings on him because, if I didn't, his legs would cramp so bad and he would grab them in pain. This went on for over a year! He still wears them on occasion because of blood clots and cramping. He was starting to recover. Maybe a couple months after he noticed a bug bite was bothering him, right where his waistband on his jeans sit. After him complaining a couple days about this I looked at it....ummmm this wasn't a bug bite. It was dark purple and hard. It was maybe 2 inches in diameter and felt hard...like bone. But it was in his belly. I took him back to the hospital, they sent us back to the University of Cincinnati Medical Center and had a room waiting for us when we arrived. He had MRSA. He was in the hospital for another week. They gave him some strong antibiotics and I again had to "pack" this deep hole in his belly twice a day. I thought I couldn't do it. It was deep and not appealing to look at...let alone dig in. But I will do anything for Tony. I'm amazed at how WE become so strong when we don't have any other choice. This too shall pass. Tony was getting tired of hospitals and I just wanted "normal".  I went through some deep depression for a little bit. It was at this time that I sat back and realized everything that just happened, everything hit me like a ton of bricks. I was so strong for 3 or 4 months and NOW I didn't want to be, now I wanted to rest and breathe. I cried a lot.  They were going to put him in a clinical study but his heart wasn't beating normal, he was still too weak, so they wouldn't approve him. He then had scans every 3 months for 1 year and then every 4 months for a year. Then every 6 months.  EVERYTHING was great for 3 years.

Tony wanted a house in the country with trees and a pond. We sold our home with the awesome landscaping and pool. We bought the house in the country and Tony a big shiny tractor! Whatever Tony wants really...I don't care, I am with him. We went to Europe in December (2007)and spent Christmas in Switzerland with our friends. We had plane tickets for June 2007 but Tony was in NO shape! All of our kids graduated from high school. Ashley our oldest daughter got married. Had our only grand baby, Carter. Our life was perfect. We were happy. We tried not to think too much about cancer for 3 years. We did fun things together. We always have fun together!

June 2010, I was having some heart issues and having some tests done. Tony was going to get his CT report from his oncologist alone. We both had appointments this day. Tony called me while I was waiting to get my CT scan. He told me he had another tumor, his left Adrenal gland. WHAT??????

I cried all the way home. No no no no no no! We both stayed home from work that day. Tony tilled his beloved garden, I sat out there with him next to the pond and we just talked. Talked about a lot of things. It is what it is...and we will take care of it!  This too shall pass. The next doctor appointment his Oncologist Dr.O said she wants him to try high dose interleukin (HD IL-2). She told us there is a 10% chance this could cure him and a 25% chance that it will shrink his tumor and slow the progression. She also told us this IS the only FDA approved cure for kidney cancer. She told us about all of the side effects. Low blood pressure, he wouldn't be able to urinate much, he would get rigors, nausea, flu like, itching skin, etc etc. The side effects are numerous AND severe. BUT the side effects are reversible AND they have meds to treat almost ALL of them. She said he would be in ICU for most of the treatments. We thought for a minute, EVERYTHING else they give you for RCC just slows the progression...it doesn't cure it....well we want him to be CURED. I don't want him to just live 2 years LONGER, I want him for 50 MORE years. OK sign us up! We didn't talk about this with anyone we just said OK. We didn't even really think about it, just looked at each other and said ok. As far as we were concerned, what was there to talk about?? When do we start. They set up the day to enter the hospital for a few weeks away. Dr.O explained he would have 1 round of HD IL-2, which consisted of 1 week in the hospital, 1 week home recovering, 1 more week in the hospital, and then home to recover. Then rest for 8 weeks and have a scan. Then if the tumor shrinks or stays the same. Do it again. 1 week in, 1 week out, another week in, and then out.

I made arrangements with Tony's daughters, Ashley and Meg, to house sit and watch our dog Roxy for the first week, my daughter Tori house sat the remaining 3 weeks; Tony's son Anthony cut grass; and friends and my sister and her family picked our garden several times and helped with things around our home.

We went to the hospital the end of July 2010. He was admitted on a Sunday. They didn't give him his first dose until Monday about 2 pm. I had planned on going home that night. He started having rigors and feeling very bad about 3 hours later. He told me he really wanted me to stay. I stayed. I never left. Ever. I stayed the whole 4 weeks that he was inpatient. Even sleeping in chairs. I had to. The nurses were NOT there with him when he started the rigors so bad. I had to make sure they had Demerol on the floor and would answer my calls asap when he was shaking so bad. I was there when he needed his pan to vomit in. When he needed unhooked from all of the monitors NOW and RIGHT now because he had to go to the bathroom. I was there to change the sheets and cry myself to sleep at night just waiting to help when he cries out in pain or when he needed his 9 blankets back on or peeled off one at a time. I was there when he couldn't make it to the bathroom in time. Nurses just are not there for IL-2 patients ... not the way a VERY patient spouse is there. I was there to make him eat his 3 bites of "cream of potato" soup a day; he was losing so much weight and they wouldn't give him any more IL-2 if he was losing too much..and he needed his IL-2 so I could keep my husband! Several times I looked up in the middle of the night and his blood pressure was 47/26 or something INSANE like that. I would wake him or sit him up to get it higher. I did everything I could to prepare him so they would give him his next dose. Because if things didn't look good, they would skip the dose. No matter how bad he felt he never wanted them to skip the dose. I didn't either..within reason. The dosing was every 8 hrs. They would give it to him, and within a few hours all hell would break loose. One night, he itched so bad I laid icy cold cloths on him and they gave him as much itching meds as they could give him. And as much sleeping meds too. He was miserable, I sat there on the side of his bed and cried and cried. I asked God to give ME his pain and itching just so he could rest. I pleaded with God. I held my hand on his head and just sobbed and prayed and begged and pleaded with God. One night he was having rigors so bad and the nurse said they couldn't give him any MORE Demerol (the only thing that works).  She said the Dr. said NO. I took a deep breathe, I tried to sound calm, I had the heat light on directly over his bed, they have them in ICU, I had 9 blankets on Tony, a dry wash cloth on his face to block the blinding light. I was sweating. It was so hot in there. I was laying my upper body over him to keep him from shaking so hard and to keep him warm. I put my sweatshirt over him too, I just had on a thin T shirt now. Tony was shaking and freezing and hurting so bad from biting down and convulsing so hard...I took a deep breath and said as nicely as I could with tears streaming all over my face and red puffy eyes, and I said very slowly "CALL THE DOCTOR BACK AGAIN AND TELL HIM TO COME DOWN HERE AND SIT WITH ME AND WATCH MY HUSBAND BEG FOR MERCY" "PLEASE"....She came back in with more Demerol.
He had convulsed or shook so bad that he couldn't move his arms for a week afterwards. His shoulders were so sore.

Another time I believe his 2nd week they didn't have Demerol on the floor. WHAT????  So after they finally got it, after Tony finally had relief and fell asleep, I walked into the hallway with the nurse supervisor and told her that this was our 2nd week here and we will have 2 MORE weeks. I said "order some Demerol NOW and do NOT let this happen again, EVER! Keep it on the floor, keep it in your pocket, JUST HAVE IT!" They started keeping it in the room or in their pockets as soon as the IL-2 was administered. He is allergic to Dopamine, a med to raise his blood pressure. I thought he was going to have a heart attack or something after they administered it. Thank God it stopped after a while. I really can't talk a lot more about the IL-2 experience because I have this ability to block bad memories out of my head. I wrote on my blog daily about this experience...if anyone wants to read the daily blog, here's the link:  http://www.terilynng.blogspot.com/  I can't read that either, it hurts me. I started reading it once and I cried and was depressed for a few days. It really was a horrendous experience for both of us.

The medication was unreal, I had to keep a written diary of what he took, at what time for pain, nausea, sleep, diarrhea, constipation, itching etc. Then I kept one of the meds that were needed at certain times. He had no idea what he was taking...thank God I stayed home from work for quite a while.

Tony's tumor was smaller after the first round of IL-2. He developed another blood clot in his leg after the first week of IL-2 and has to be on Fragmin injections again. Probably for the next 6 months. We held our breaths and finally could breathe some. After the last IL-2 dose Tony felt very bad. He had a total of 32 doses. He had 12 the first week, 9 the second week. Then the next time he had 6 the first week and 5 the last week. Tony was recovering nicely during the wait for the next CT scan. Something happened with his skin in Dec 2010. He started itching so bad. So bad that he put Ace bandages around his knees so his jeans wouldn't rub the back of them...they were raw. I did all kinds of research and read that Adrenal dysfunction can cause eczema, Vit C deficiency does too. I tried Aveeno baths, Epsom salt, vinegar etc etc. I made him drink orange juice and soak in a tepid vinegar bath. They said he should not use steroids or hydrocortizone on IL-2 patients as it reverses the effectiveness of the IL-2. Christmas eve..ughhhh one of the worst days of my life. Tony was itching so bad I wasn't sure if he was going to be able to survive. YES it WAS THAT bad! It was so bad, he was digging, and bleeding from the severe scratching because of the blood thinner "Fragmin" that he is still on. He was miserable! Yelling and crying and just in excruciating pain..all over his body. I was giving him the highest dose of Hydroxyzine, the dose they give to sedate people. I finally put some 1% cortisone on him. I mean...I had to do something...life was unbearable. UNBEARABLE!  He finally fell asleep and I just prayed that he could sleep and STAY asleep. I asked God how much more he was going to give us because this was as much as we could handle. I cried myself to sleep. We woke up on Christmas and did that same routine with the juice and bath or Cervase lotion, a little cortizone and Tony was finally feeling like he could function. He is still itchy now 1-6-2011. BUT it is not all over his body. I think his knees were infected. We do NOT use the hydrocortizone cream anymore. BUT like I said...we had to do SOMETHING!

The latest CT shows the tumor has shrunk so much they no longer even call it that. They now call it an Adenoma, it is on his left adrenal glad. They will remove his gland the end of February or early March. Then they will do scans every 3 months. But right now...they do NOT see anything. Thank you Jesus for IL-2 and being here when we needed you the most! NO ONE can understand what our last 6 months have been like unless they lived here or went through it themselves. Our lives were a living hell....but 6 months of hell for a chance at a lifetime of being NED seems worth it to us.

This whole journey with Tony has made me realize how precious life is. I don't want life to pass me by, I want to live and have no regrets, I want to do what makes me happy and live in the now. You never really know if tomorrow is going to come. So do something wonderful today. Make someone smile and make yourself smile while you're at it. I love Tony with all of my heart. Sometimes I might not want to go for that drive or that walk in the woods but then I realize that I NEED to, I don't know if tomorrow will be here...so I go. And I smile and hold Tony's hand. Thank you Jesus for not taking Tony just yet, we still have a LOT of living to do.

"The Love Birds"

Tony the Cook

Just Hangin' Out:

 Working:

Tony Enjoys the Little Ones