Linda Gaulke
Hi…my name is Linda and this is my kidney cancer story.
If you are reading this story, I’m afraid it means that you or someone you love has been diagnosed with kidney cancer. If that’s the case…I’m sorry you have had to join this family! We lift you, and those around you, up in our prayers!
I am not new to the cancer rollercoaster as my father battled cancer (including kidney cancer) for many years prior to his passing in 2008. My paternal grandmother died from kidney cancer (RCC) at the age of 86. My cousin was recently diagnosed with stage IV breast cancer. I guess it’s my turn now.
I’m so fortunate to have a great deal of support from my son, family and friends, in addition to great bosses. My friends and family have, and continue, to walk this journey with me! I know God has blessed them and me! I had a friend tell me the other day, “We are going through this with you”. I knew how much this affected my family but didn’t really understand the impact it was having on my friends and coworkers. I’m a firm believer in a positive attitude as well as laughter. My sister and I have decided to name my cancer “Igor” as it is ugly and it needs a master! I am the master of this disease!
My story began in the fall of 2009. I experienced a sharp stabbing pain in my stomach when I was exercising. I thought I had pulled a muscle as the pain went away. However, throughout the fall and winter, the pain would come and go. In May 2010, my son and I took a road trip to San Antonio to celebrate my 50th birthday. On my birthday, we went to the Alamo and as we were touring the grounds the abdominal pain returned. The pain was so bad I had to sit down for awhile to let it ease up before I could continue the tour. After this trip, the pain seemed to come more frequently and last much longer. Memorial Day weekend the pain became chronic. The pain was so bad it would make me stop in my tracks and at times felt as if someone had stabbed me with a knife. I decided it was time to see a doctor as I knew it wasn’t a pulled muscle.
On June 14, 2010, I went to my doctor and he immediately ordered a CT as in his words “you don’t complain about pain so I knew something serious was wrong”.
On June 17, 2010, I arrived (alone) at the hospital for my CT. The scan was being performed by someone who used to work for me. I asked him how long it would be before my doctor received the results. He told me it would take about two days. The CT was completed and he told me he needed me to wait as the radiologist was going to read the scans. A while later, he came out and told me the radiologist had read my scans, had spoken with my doctor, and my doctor wanted me to go to his office as soon as possible. I knew it was bad and I called my son so he could go with me to the doctor’s office. When we arrived at the doctor’s office (1.5 hours after the scheduled time of the CT), the doctor told me they had found a 12 cm tumor on my kidney; they believed it was cancerous and he had scheduled an appointment with an Urologist for the next afternoon. I immediately called my bosses and they told me to take as much time as I needed. (I am so blessed to be working for these men!) I then needed to tell my mother. This was probably the hardest as she is 81 and had watched my father die of cancer just two years prior to my diagnosis. She maintained a brave front for me.
On June 18, 2010, I met with the Urologist. He showed me the CT picture and told me I needed to have my kidney removed within the next seven to ten days. The surgery was scheduled for June 25, 2010, and I started the battery of tests needed prior to surgery. I was in such shock. Was I going to die? How long had I this tumor? Would I need chemo? Would I lose my hair? Had it spread?
On June 25, 2010, my Urologist performed a hand assisted laparoscopic radical nephrectomy on my right kidney as well as cleaning up some surgical adhesions. The tumor was 13 cm and was stage II grade II. The Urologist told me there was a 62% chance the cancer wouldn’t come back and he thought I should participate in a clinical trial that was being offered through the cancer center. I’ll never know whether the cancer or the adhesions caused my pain…whichever one it was I am thankful for that pain. I was in the hospital for 3 ½ days. About 2 days after getting out of the hospital, I started having severe abdominal pain and on July 5th the pain was so bad I ended up in the emergency room. Another CT showed some darkening in my abdominal area and the doctor thought I might have some inflammation of the mesenteric flap. It was later determined I had torn my rectus abdominis muscle. I was told there wasn’t anything that could be done for it and I could expect at least 2 months for it to heal.
On August 4, 2010, I met with the Oncologist at the cancer center. He stated due to the size of the tumor, he wanted me to have a PET scan to determine if the cancer had spread; as when a tumor is as large as mine, it sloughs cells. He said after the results of the PET scan were received, we would talk about either the clinical trial or treatment whichever was appropriate.
On August 11, 2010, I had the PET scan done and on August 12, 2010, I met with the Oncologist. The results of the PET scan showed no evidence of disease (NED). The decision was made to attempt to obtain acceptance into the clinical trials; however, we were under a time crunch as the doctor was going on vacation and the trials closed for new participants on September 1, 2010. The clinical trial is being done to determine if Sutent and/or Nexavar should be used to prevent the recurrence of kidney cancer. These drugs are currently available for those with metastasized kidney cancer but there isn’t any protocol in place to prevent the recurrence of kidney cancer. There are three ARMS to this trial: one receives the Sutent; one receives the Nexavar and one receives a placebo. Although placebos aren’t normally a part of cancer clinical trials, they are vital in determining whether these drugs can be used to prevent recurrence. That said, there is a chance I’ll receive a placebo, but I feel I must participate in the trial. Hopefully, to prevent my own recurrence; but, I am also hoping this trial will result in medications for prevention not just treatment of metastatic disease.
On August 12, 2010, I received notice that the Oncologist was going to call the clinical trials on my behalf. Later that day, the cancer center contacted me to come in as I needed to get the informed consent paperwork completed that day. With the informed consent in place, things started moving quickly. I was scheduled for another CT and a MUGA scan, which will occur on August 24, 2010. (For those of you who don’t know, a MUGA is a Multi-gated Acquisition scan of the heart. This test is done to make sure the heart can handle the medications.) On August 27, 2010, I received notification that I had been accepted into the clinical trial and on September 7, 2010 I will start the medications.
I have been very lucky and blessed to have met some amazing people during this journey. I have never met a stronger group of people than those I’ve met through Kidney Cancer Warriors. God bless you all! I’m not sure I could have made it through this without your support. To those of you who are caregivers, family members and friends of someone who has cancer, you are amazing people and your support is so important to us!
And so my journey continues! I know this will be a long journey and one that could involve travelling through many peaks and valleys. I am strong in my belief that God has placed me on this path for a reason. I WILL defeat this cancer!
Linda Gaulke
Colorado
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