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