In November, 2009, after experiencing some indigestion and thinking maybe I might have gallstones, my doc ordered an ultrasound that discovered a grapefruit size tumor in my liver.
For the next two months things seemed to be a whirlwind of different tests, doctors, and procedures. Then on December 1, 2009, I received the dreaded phone call with those dreaded words, "I am so sorry, it is cancer". At first they couldn't distinguish what the primary cancer was, after several pathology reports, I was eventually diagnosed with Intrahepatic Cholangiocarcinoma, a very rare bile duct cancer with no known treatment.
I spent Christmas in the hospital having a liver resection. They took 2/3rds of my liver out and they felt confident that they had removed all the tumor with good margins. Unfortunately, at my six week checkup, some spots showed up in my lungs and another nightmare had begun.
I was now labeled Stage 4 metastatic Cholangiocarcinoma. The only option for treatment was palliative care, using standard of care chemo drugs. I began the merry-go-round of chemotherapy and all the fun that goes along with it! Knowing all along that this was not going to cure my cancer.
In the beginning my docs wanted to try a clinical trial, but my insurance would not pay as it was experimental. I struggled with the insurance companies to cover alternative treatments, clinical trials, or anything that may be new. I found myself working with the Cancer Support Community out of Bozeman, MT and a group of very amazing people. They where in the process of lobbying for change. This change was that insurance companies must cover clinical trials. I found myself going with the group to the State Capital on several different occasions to speak before the different committees. I wanted them to understand how frustrating it is dealing with insurance companies and having them tell me what I can and can not do with my own body for treatment. It took some time and finally it was passed into law that Montana would mandate Insurance Companies to cover clinical trials.
Thus began my relationship with the Cancer Support Community from Bozeman, MT and a great group of people that came together to fight for this bill that after 2 years was finally passed into law, stating that insurance companies had to pay for the standard of care for cancer patients who chose to enter into a clinical trial to find treatment. One of my proudest moments and one of the most important things I have ever done.
After many attempts at trying chemotherapy I found myself not wanting to spend the rest of the life I had left using a chemo that would not cure me but had already caused so much damage. Chemo was toxic and it was not holding against this rapid growing cancer within me. I miraculously happened upon the NIH site looking for a clinical trial. I wanted something new, something that would make history. I know this is asking a lot but after becoming frustrated with being told it may take 10-15 years for "a" new drug to be approved, I needed and wanted something now.
While all of the lobbying was going on I went back to my site in search of a clinical trial that would fit my type of cancer. One screen popped up a new clinical trial that fit my description! I was excited to learn something had opened up. I immediately called to find out more details and to see what I needed to do to enter into the trial. I have always felt that this was a "God" thing, they way I found it and how it all took place....I believe in the power of prayer and I believe in miracles! In March of 2012, two years and four months after diagnosis, I entered into this trial at the National Institute of Health, The National Cancer Institute in Bethesda, Maryland.
My husband, Steve, and I headed out to the east coast and began the process. Fortunately, I have my brother Danny and his family who live real close in Ashburn, VA and I had a childhood friend who lived close also for the first year of trial. They both were and have been so amazingly helpful, selfless, kind, generous and giving to me that I could never express my gratitude to them or come close to repayment.
In March of 2012 the removed four tumors from my left lung. They then took the TIL, (tumor infiltrating lymphocytes) from the tumors, grew them in the lab for about a month and then in April, Steve and I returned to NIH for treatment. The first week, I was given 2 strong chemo drugs to deplete my immune system and prepare it for receiving the new cells. The second week, I received 42.6 billion of these cells into my body in hopes they would attack and kill the cancer. The third and fourth week is recovering. Giving my body the chance to rebuild my depleted immune system, red blood cells and platelets. It was a grueling process.....but I have always said it was worth it.
For the first six months my tumors shrank, the next six months they stayed the same and after that they slowly started to grow again.
What I was given was about a year and a half of amazing life....good quality life. I am grateful and blessed. I feel like a miracle.......Now, we are at the point of starting this process all over with higher hopes. The researchers feel strongly about repeating this treatment. It seems they have honed in on my cells and found some super fighters and want to see how they will work.
This is where I will start this site....from the beginning of round 2........