Mesothelioma Survivor Kasie Coleman Celebrates Each Day
June 7, 2013
July 1, 2010, was the day that my life changed forever.
I was a married mom with two young sons, Wes and Ross. My days consisted of carpool, work, taking my kids to their extracurricular activities, preparing dinner and laundry.
In October 2008, I began to feel slight discomfort in the upper abdominal area. My family practitioner said I had probably bruised a rib. As a pharmaceutical sales representative, the only thing that I lifted was my laptop and drug samples. However, you never question a doctor, right? So I didn’t.
He prescribed some muscle relaxers and sent me on my way. The pain would cease for a couple of months, but in May of 2009 the pain was back with a vengeance. I could hardly stand. I was in the midst of celebrating my cousin’s high school graduation, and I couldn’t move.
Paralyzed with pain, I decided that enough was enough and I drove myself to the after-hours clinic. The physician touched my side, and I nearly leaped off the exam table. He told me that he was certain it was gallstones and told me to go immediately to the emergency room. Later that night, after 4 hours in the emergency room, doubled over in pain, I was diagnosed with Chlamydia.
After an ultrasound and pelvic exam, the ER physician was 99.9 percent sure that I had a sexually transmitted disease. With no official results, I was forced to live in agony, furious with my “cheating” husband for an entire weekend. On Tuesday, the results were finally faxed to me, and they were negative. Thank God for me and my poor husband, I did not have Chlamydia.
Still in pain, I was on a quest to find out what was going on with my ailing body. The only thing that I remembered from my ER visit was that they had found fluid around the liver. Searching through the yellow pages, I found one gastroenterologist who was a liver expert.
He assured me that he would not stop until he gave me a proper diagnosis. After multiple tests, he sent me for an MRI. Two hours after my test, I received a call.
With my heart in my stomach, I drove back to the office and was told that multiple tumors were found. Due to the location, he was certain that it was ovarian cancer and sent me directly to an oncologist that same day.
During my four-block drive, my life began to flash before me. I became emotionally numb. How could this be? God, are you serious? My blood work was perfect, no blood pressure problems, nothing. The oncologist pressed around my stomach and told me that it was most likely Stage III ovarian cancer because she could feel it.
‘I Want to Live’
A week later, I was in the office of yet another oncologist. This was the “best” surgical oncologist in town. My husband and I walked into a dimly-lit waiting room with halogen floor lamps and the sound of “Amazing Grace” being played on bagpipes. I thought to myself, “How much more depressing can this be?”
Faced with the thought of dying, I was desperate to find hope, and I knew I wouldn’t find it in a funeral home setting.
After my physical exam, we sat down in the doctor’s office for a consult. After a series of questions, he asked me, “What do you want to do? Since you’re not in any pain at the moment, you can either wait until the pain presents itself again or we can perform an exploratory scope and take out any abnormalities.”
My husband and I were stunned that he asked what I wanted to do. “I want to live!”
Childbirth, Tumors and Hernias
This consultation was in July, and I wasn’t scheduled for the scope procedure until October 2009.
Impatient, and determined to not let my Stage III progress to Stage IV, I made some calls and was at MD Anderson in Houston within two weeks. Once at MD Anderson, I just knew that all would be resolved.
I thought wrong.
After more fruit-flavored barium and CT scans, I was told that the tumors were probably from delivering my children. According to this physician, lots of women develop benign tumors after childbirth. He drained approximately 1 liter of fluid from my liver, and all of it was benign — therefore no cancer.
In June 2010, I was bloated again. But this time, I could hardly button my pants. I couldn’t stand up straight. I went back to my gastroenterologist and told him that the pain was back. Puzzled, his response was, “I don’t know why you keep getting this fluid. I have one other patient like you. Although this is rare, your blood counts are normal. MD Anderson gave you the green light, so I wouldn’t worry about it unless it’s too painful.”
A week later, I told him that the pain was unbearable, and he told me that I had probably developed an umbilical hernia. I was sent to a surgical oncologist for a hernia repair. At the time, I couldn’t figure out why, but again, who questions the doctor?
Baths and a Shocking Diagnosis
I typically spend at least an hour every night in the bathtub, but for two weeks after my hernia repair I had to take showers instead. It was finally time to visit the oncologist to get my bandages removed. The day was July 1, 2010. I worked a full day, and I was so looking forward to soaking in my bath salts again!
While sitting on the exam table freezing to death, I was greeted by the surgical oncologist and his student. I wondered why he was taking a seat just to tell me that it was OK to take baths instead of showers.
“While repairing your hernia, I found a mass. I sent the tissue to two different labs, one of them being the Mayo Clinic, and they all came back with the same diagnosis: peritoneal mesothelioma.”
Once again, my mind left the building. It took everything in me not to cry. I refused to let this man see me have a meltdown. I don’t remember anything that was said after that. I saw his lips moving, and I even heard the words coming out of his mouth, but for some reason I couldn’t comprehend any of it.
He told me that it was extremely rare — so rare that it is only diagnosed a few hundred times per year in the United States. The doctor was stunned by my age and started to grill me. I immediately remembered that my old high school was demolished due to exposed asbestos in the gym and other areas.
Dr. Money and Asbestos.com
My simple office visit turned into the worst day of my life. Of course, like anyone else, I tortured myself by “educating” myself about the disease on the Internet. According to Google, I had a year to live. Determined not to die, I was on a mission to be an exception.
My only chance at survival was to see a particular physician whom I call Dr. Money. All of my medical records were sent to Dr. Money, and after reviewing my case he agreed so see me. Most physicians offer free consultations, but not Dr. Money. He did not accept insurance and wanted $30,000 up front for a consultation fee. The $30,000 would be deducted from the total amount of the procedure ($325,000).
My husband and I didn’t even have $5,000 in the bank, let alone $30,000. My husband suggested we put our house up for sale. Although I was grateful for the gesture, the total cost of our house still wasn’t enough to cover the procedure.
At the time, I was a pharmaceutical sales rep. I consulted the powers that be, and they agreed to compensate Dr. Money at the preferred “in-network” rate. Elated with this news, I just knew I was on my way to a miraculous cure.
Dr. Money’s wife informed me that even at the preferred rate, it wasn’t enough money. She told me to host a couple of fundraisers and then call her back to schedule the procedure. How could someone be so callous and nonchalant with someone who potentially has a year to live? I was distraught, mortified, angry, hysterical.
The Internet that told me I’d be dying was the same Internet that led me to Asbestos.com. I called the 1-800 number and asked the nurse on staff if I was going to die. “Who told you that?” she asked.
I explained to her that my only chance at living was going to cost me $325,000. She told me that financial assistance was available. She then gave me the name and number of a physician in Pittsburgh. I was on the next flight out to UPMC in Pittsburgh.
On Aug. 29, 2010, I received my first HIPEC procedure. I was away from my family for 3½ weeks. Pittsburgh became my new home. I awakened from my 10-hour procedure to tubes coming in and out of every part of my body. The doctor told me that everything went great and that everything was removed. I returned home the latter part of September, just in time for my son’s 2nd birthday. November, December and January were spent receiving chemotherapy every 2 weeks.
Chemotherapy and Clinical Trials
Every two weeks, I was reminded that all was not right in my world. I was reminded that I could die. I wasn’t normal. I was a young woman with a terminal illness. For six hours, I would sit in the La-Z-Boy recliner in the Chemo Lounge with the other chemo patients. Some were bald, coughing, vomiting, sleeping, sick.
In March 2011, the tumors were back. The doctors gave me a new chemo cocktail, but no luck. On Aug. 29, 2011, I returned to Pittsburg for another HIPEC procedure. This time I knew what to expect; I was a pro. I went in with no fear and no reservations. This time was to be the last time, I was certain. After this procedure, I didn’t receive additional chemo because my body couldn’t handle anymore.
In December 2011, my CT scans revealed spots but nothing to worry about. By January 2012, those same spots were double the size and had managed to spread to new areas. Fantastic!
It was at that moment that I received the famous speech, “There is nothing more we can do for you.” They told me to find a medical trial to participate in. Really? How is it that someone who is on the brink of death is left alone to find their own trial?
As if I didn’t have enough to worry about, now I had to find a trial somewhere. Back to the Internet I went. I didn’t have any luck at all. I called MD Anderson, and they wanted me to see an internal medicine doctor first. I couldn’t understand why in the world I would need to see an internal medicine physician. This was taking me back 800 steps instead of forward.
Frustrated with moving backward, I grew tired of searching for someone willing to help me. While watching television, I saw a commercial for Cancer Treatment Centers of America. Luckily, they treated peritoneal mesothelioma.
At Long Last, Remission
I was prepared for a third HIPEC procedure if that was what it was going to take. My case was presented to the tumor board and because of the size and location of my tumors, a HIPEC wasn’t in my near future. I was given a new chemo cocktail every 21 days for three months.
On June 8, 2012, I was officially in remission! In disbelief, the doctor performed an exploratory scope in August, and again everything was clear. I’ve been in remission ever since.
Today I am the proud owner of Sugarbelle, a neighborhood cupcake bakery in Baton Rouge, La. My children are 10 and 5. I’m so grateful to have this opportunity to reach out and share my experiences with those of you who are living the life that I live.
I welcome you openly to my new blog. Together we will laugh, cry, share hope, and most importantly, LIVE!
If you have a question or comment for me, leave it in the comments below or on Facebook.