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 

January 2011: Christie Lynn Johnson Gage

Featuring and Written By:
Christie Lynn Johnson Gage

My Life with Kidney Cancer

Today is January 20, 2011, and as we quickly journey through the month of January, I am reminded of when I was diagnosed with Renal Cell Carcinoma (Kidney cancer), January 19, 1982. Early Sunday morning January 17, 1982, I went to the bathroom and had a lot of blood while urinating. I thought that to be very odd, as I was nursing our baby daughter Maren, and she was almost 5 months old. I didn’t think much of it and went back to bed. As the morning progressed, I was passing a lot of blood in my urine. We called my Internist and he told me to go to the ER in Enumclaw as it was the closest hospital.  He wanted me to get a urinalysis and Culture. We did, and while there, I was told there was no infection, but the urine was sent to be cultured.


I was born September 21, 1947, in Mount Vernon, Washington, the oldest of six kids, and raised in that town. I was always a healthy kid, no illnesses, just the usual tonsillectomy! I am half Norwegian, ¼ Irish, and the other ¼ is German, Dutch and some Swedish (my Grandpa Johnson used to tell me that the last ¼ I mentioned was Heinz 57)!! When I was 16 going on 17, I saw The Beatles at the Coliseum in Seattle, WA, in August 1964.  I love The Beatles!! Later that month, my dad took me, my sister Patty and my brother Walter hiking across the Cascade Mountains from Darrington to Holden (just under 40 miles), along with my school friend Marilyn, my dad’s bosses son, and a neighbor boy!! What beautiful sights we saw crossing the mountains on foot! I loved that trip! I graduated from Mt. Vernon High School in 1965. I am a Christian who loves the Lord with all of my being! August 31, 1966, I married my wonderful husband, Ellery Gage at Fir–Conway Lutheran Church. We have six kids Ellery Jr., Melanie, Melissa, Joel, Megan, & Maren, plus my step-daughter Lisa, who I claim as my own!! At the time of diagnosis and surgery to remove my left kidney, the kiddos ranged from 14 yrs old to 5 months old. Lisa was 18, and she was raised and still lives in Texas.


The next morning was Monday, January 18th, Ellery was going to leave for work and suddenly decided to stay home and take me to see my Doctor. We called my Doctor’s office and they had us come for an appointment in the late morning. We packed up our two youngest girls, Megan has just turned 3 years old before Christmas and Maren would be turning 5 months old on January 19th, the next day. Upon seeing my doctor, he called an Urologist to see if I could be seen. We went to the Urologist’s office, I was hemorrhaging upon urination, and I was admitted in the hospital! What a whirlwind of events! I just wanted to go home and get my “stuff”! Tuesday, January 19th was filled with lots of tests.  It was confirmed around dinner time that I had a tumor at the base of my left kidney the size of an orange. I was only 34 years old, how could this be? My Urologist had already scheduled me for a CT scan and Bone scan on Wednesday morning, January 20th, and surgery at 5:15 PM.  Maren would have to go home the next morning before the tests began.


Tuesday evening, January 19th, my best friends, Jeannie, JoAnn (they are sisters), and Arlene came to Swedish Medical Center to get Maren and take her to our neighbors Carol and Vic’s, as Carol said that she would care for Maren while I was in the hospital and recovering. After Jeannie, JoAnn, Arlene left with Maren, Ellery left as well. I called Carol and I was crying so hard, so sad that Maren had to leave. I felt so alone. Maren was a nursing baby. About two months after my surgery, Carol told me that she would not drink a bottle for a couple of days, and then she got used to it and accepted it!


On Wednesday I seemed pretty calm about things. I knew that God was going to see me through all of this and that He was with me all the way! Ellery was with me all of the time. His folks, Bernard and Margaret came. My mom, Dorothy and sister Patty came. Ellery had brought Megan (3) that morning. The surgery went well and, at the time, the cancer board rated my tumor a 1 on a scale of 1 to 10 (10 being the worst), very non aggressive and very slow growing. They actually thought that I may have had this tumor since I was a kid!


During my pregnancy with Maren, who was 5 months old, I was pretty sick most of the time. I remember towards the end of my pregnancy, wishing I would have the baby, as my stomach hurt a lot. During the pregnancy I lost so much weight that I gained a total of 3 pounds during the 9 months.


For years, I had always had my 6 month and yearly checkups. In the summer of 1995, I was extremely tired, didn’t feel well, and started to have some soreness in my mouth. It got very sensitive and I told my Dentist about it. He wanted me to see an Ear, Nose, Throat specialist, so I did, and the ENT specialist wanted me to see a gastro-interologist. I saw a doctor at Valley Medical Center in Renton. At the time I had been having some pain in my upper abdomen. He wanted an Ultrasound that day, so after working most of the day I left for the ultrasound. Not thinking much of anything! Maybe an ulcer?! By the time I got home, the nurse called me and told me that I had a mass on my pancreas, and that I needed a CT scan ASAP. This was the day before Thanksgiving, so the clinics would all be closed on Friday, so they had me go to Valley Medical Center Friday after Thanksgiving. The CT scan didn’t show much, and so they decided to have a meeting with other doctors at Valley Medical Center to compare the CT scan and the Ultra sound. After the comparison, they did see on the CT that there was a tumor at the base of the tail of the pancreas. Then we started to move a little faster! Had some tests at the University of Washington and then saw a Surgeon. Beings I had my nephrectomy at Swedish Medical Center and had Dr. Hart for a previous minor surgery, I chose him to do my partial pancreatectomy. Dr. Hart is noted for being one of the best surgeons on the pancreas. I had surgery December 19, 1995, at the age of 48. My surgeon removed the tail and part of the body of the pancreas and he also removed the spleen. I was in the hospital during Christmas. I had a good Christmas though, Ellery and our kids and two grand-kids came and spent the day.  We took pictures and I got around pretty good!

Pathology reported that there was no lymph node involvement. They did find another tumor closer to the surgical margin, something that sort of haunted me for many years.

After coming home from the hospital, I was doing pretty well. We really hadn’t celebrated Christmas with gifts etc., so we planned on celebrating on Epiphany Sunday, January 7, 1996. Saturday, January 6th, Ellery and I went down to South Center Mall to shop for our kids. We didn’t have any gifts yet! No time before surgery to shop, as I was so exhausted and didn’t feel well. My younger girls Megan and Maren decorated the tree for me before I went to the hospital for the surgery. On Jan. 7th we fixed a big prime rib dinner (the meal we usually have every Christmas Eve), the kids and grand-kids came, and we exchanged gifts and had a great day! As the evening progressed, I started to have some severe pain in my upper abdomen. It got so bad that I just knew I had to go to the ER and see what was going on. I had a collapsed left lung and empyema. So I had to experience the dreadfully painful chest tubes! I can remember being in so much pain that I asked God to just take me, because I couldn’t stand the pain anymore. One week later I still was having a terrible time. The pain was unbearable. (Sometimes I honestly don’t know how I got through all of the pain). Monday, January 15th, I was taken to surgery and they inserted two more chest tubes. My recovery was long and painful. Finally in early March I was able to go back to work.


Nearly 12 years later, I had just turned 60 and had CT scans in September.  I was called in for another CT scan as they found a tumor on the head of my pancreas. This was getting a little frightening! More test, and they revealed 3 tumors at the head of my pancreas and in the body of the pancreas. Saw my surgeon Dr. Hart, and another surgery was scheduled for renal cell carcinoma metastasis. Surgery was November 27, 2007. I was on my way to having a Whipple Procedure to remove the rest of my pancreas. It was an emotional day for my family. Ellery decided that since he had walked to the OR area with me the two previous cancer surgeries,  that my mom should walk with me. We walked down to the OR and I got on that gurney, pretty afraid, but not letting on! My mom stayed with me while I got the epidural. Then we said our goodbyes, and into the OR I went. I had many family members and friends there waiting during the surgery: Ellery and our two younger daughters Megan and Maren, now 29 and 25 yrs old (remember they were the babies during my 1st surgery); my brother Walter and my sister Patty; my mom of course; Ellery’s mom Margaret and dad Bernard; his brother Victor and his wife Sharlene; and also our dear special friends Pat and Gail Sullivan were also there. What a great bunch of people, so caring and just being there! I was in Swedish Medical Center in Seattle for nearly a month. Slow recovery. My surgeon removed the rest of my pancreas, the duodenum and part of my stomach. All the lymph nodes sent to pathology were fine, no cancer. But the cancer was at the wall of the pancreas.


Fast forwarding two and a half years, we are now into March 2010. My CT showed mRCC in my liver. I could not even imagine! I never thought that I would ever have it in my liver, let alone more aggressive than the three times before, beings it was always slow growing. Although, in September 2007 the tumors in the pancreas had shown significant growth from scans done in March 2007 (no tumors noted) to September 2007. 


My Oncologist, Dr. Goldberg, decided that I should have some treatment on these 5 tumors in my liver. Most of them were on the right side of my liver, but they were all throughout my liver, not in just one place. One was in the left lobe of my liver. I had chemoembolization in early April 2010. The procedure went well. It caused a lot of pain and nausea for a couple of weeks, which was normal. Then on April 16, 2010, I started Sutent 50 mg. I got many of the side effects which included my hair thinning, sore mouth, very fatigued, and sometimes nauseated. I seemed to function pretty well despite the side effects! I remember throughout the months of May, June and July, I would have some pain in my liver area. I would just rest a little when that happened. We planned a big party at our house July 18th for my father-in-law Bernard’s 103rd Birthday and had a great time! What a milestone! He is still doing very well with a sharp mind and just a joy to be with!


Saturday, July 24, 2010, I went to bed about 10:30 PM. Within a couple hours I woke up just freezing and shivering! I got up and got another blanket. I was so cold. I also had some pain in my liver area. Sunday morning I wasn’t feeling well and my abdomen was still hurting so I just rested. In the early afternoon our daughter Melissa stopped by, as she knew I wasn’t feeling well. She took my temp and it was 101. I was also having another one of those freezing spells and wrapped myself up in blankets. I should have called the doctor, but this stubborn Norwegian thought she was going to beat it all on her own! The next morning I called the doctor's office and they told me to come in. I was in so much pain by this time that I could hardly stand it. They sent me for a CT scan, and it was the most painful scan experience ever. My abdomen, mainly my liver area, hurt so bad I could hardly lie down on the CT scan table. Dr. Goldberg admitted me to Swedish Medical Center after the CT scan revealed 2 large liver abscesses. I was taken off Sutent. I also had an Infectious Disease Doctor who did a marvelous job in helping me to get well! I left the hospital 10 days later with oxygen, my PICC line, and 2 drainage tubes from the liver area. I was very weak and still in a lot of pain. Ellery was such a good nurse caring for me at home. He took care of my PICC line, administrating my antibiotics, etc. For many weeks after getting home, I saw my Infectious Disease doctor every week through the beginning of September. Each week a new bacteria was growing in the culture of the fluid from the liver.


November 29th I had my first Torisel infusion. I seemed to tolerate it very well. I had 4 more infusions, one each week. By the end of December, I had a terrible rash and was taken off Torisel.

This past Wednesday, January 19th, I started on Afinitor. I have taken 3 pills now and seem to be tolerating it well. I just pray that it all goes well.


Now our family is all grown up and they have families of their own! Fortunately they all live close by! We see them often and get together for lots of birthdays and holidays! I love our time together! What a privilege to have such a wonderful family! And to have such wonderful friends!


It has been quite a journey! Along the way I have learned how precious life is, for each and every one of us. I have met the most beautiful people on this same journey, and I value our friendships so much. I pray for each and every one of us every day. God is good and He has blessed me beyond measure, and I thank Him for all that He has brought me through!


Christie Lynn Johnson Gage