Thursday, May 27, 2010

My Cancer Testimonial

Today I was asked to give my cancer testimonial so I spent all day working on this with input from my sister, Kim. Thanks Kim!

Two weeks ago I was asked to do a blog radio program on cancer as a chronic illness. I found writing to be easier for me than speaking over the phone to listeners I don't know. :)

Here is what I wrote:

On the day before my 45th birthday, I sat in my primary doctor's office. I was there because I felt there was something wrong. I'd been experiencing almost constant diarrhea for more than six months and knew the symptoms of colon cancer.

I went for blood tests, stool and bowel tests, bowel x-rays and finally, after some discussion, given the authorization to see a gastroenterologist. A month passed before my scheduled appointment. We scheduled my colonoscopy for two weeks away on September 5, 2007.

I was the youngest person getting the procedure done and the only person who had a bad report. The doctor came in to tell us that he'd found a tumor and that I needed surgery ASAP. We left and called our family doctor for the name of a surgeon.

A week later I went in for what I thought would be a consultation with the surgeon, so I went alone. He walked in and wanted to know why I was there. I asked if he had received the report from my colonoscopy and he said yes. He wanted to know if I understood why I was there. I said yes, the doctor found a tumor and I needed surgery to remove it. The surgeon said yes, but you have an aggressive form of cancer and it's probably spread to your lymph nodes, your liver and your other major organs so you don't have long to live, and that I'd better get my affairs in order. I told him I've lived a full and happy life, have no regrets and have even gotten to meet my first grandchild. Then I asked him when we could schedule my surgery. I left his office and went to a restaurant where my son was the manager. I sat at a table and waited for him. While I waited, I called everyone I knew except for my husband who I wanted to see face to face.

A week later I had surgery to remove 12 inches of my colon and 17 lymph nodes. All of the nodes were cancer free but the surgeon found a mass on my pancreas and felt it would be too risky to remove it at that time. I was given the diagnosis of Stage III cancer of the right ascending colon.

In late October I was sent to The University of Pittsburgh Medical Center in Pittsburgh, PA for an endoscopic biopsy of the mass on the pancreas. The results indicated colon cancer which had probably spread through the vein running through the bowel.

I was then sent to Dr. A. James Moser at UPMC who is the pancreatic cancer specialist even though it wasn’t pancreatic cancer. After meeting with him, we decided I would do chemotherapy to shrink the cancer on the pancreas and then a second surgery. That surgery is called The Whipple Procedure and is incredibly difficult. It would be anywhere from six to 14 hours in length and could even result in me dying on the operating table. Still, it was my best option for survival so we took it.

Because my options were considered limited, I was accepted into a clinical trial for Xeloda pills at 3000mg per day for 14 days. By day 12 I couldn’t remember whether I had eaten or had anything to drink, and was sleeping 24 hours a day. I started throwing up and could no longer stand. My legs burned and cramped. My husband drove me to the emergency room where I was admitted.

It turns out that without food and water in the stomach, Xeloda became toxic and destroyed the inner lining of my stomach and gut. The doctors told my husband that I probably wouldn’t leave the hospital. I threw up constantly and also had diarrhea. They didn’t know what was wrong.

Finally, someone from the Arnold Palmer Cancer Center in Greensburg, PA, saw my name on the hospital list and recognized it because I had scheduled an appointment to meet with their doctors. I was in a dream like state the entire time I was in the hospital. I hallucinated and the nurses even found me walking the halls once. Finally, I got better and was released. No one realized how very close I came to dying except for my husband. The next day my parents took me to see Dr. Viverette at the Arnold Palmer Cancer Center. I lost 10 pounds during the time in the hospital. No food or liquids by mouth for 11 days.

Because I was still so sick, I didn’t start chemo (Folfox regimen) until the middle of January. It would be one week on and one week off. I did 10 rounds of chemo and by the end of May had lost 30 pounds.

During this time I had been going in for PET scans which showed that the cancer was shrinking. Dr. Moser scheduled my surgery for July 25, 2008; a few days after my 46th birthday. I remember going into the pre-op area and my husband accompanying me. I even remember the anesthesiologist putting in two needles in my back but I don’t remember anything until I woke up five days later! Seems I stopped breathing in the recovery room after the surgery. If the nurse hadn’t come back in to check on me I would have died. They rushed me to ICU where I was put on a ventilator. My husband says I was in a coma but I don’t know.

After I woke up and was breathing on my own, Dr. Moser came in to my room and told me that I got what I wished for. I asked what that was. He said God had given me a miracle because when he did the surgery he didn’t find any cancer anywhere. He saw where cancer had been because it looked like a burnt-off charcoal substance. He cleaned everything and sewed me back up.

In the past year I’ve had three PET scans and blood work done. CEA results have all been well under the normal range; 0.3 – 0.7 with nothing higher. The July 2009 PET scan showed lymph node activity in the chest and abdominal cavity. I told my oncologist that I would humor him by going back on chemo but I wasn’t about to tell God that he didn’t do a miracle on me. So I started back on chemo and three months later had another PET scan which was clear. March 2010’s PET scan was also clear. God is good and I believe I have been healed.

My parents have both had polyps removed during routine colonoscopies. Because of my cancer diagnosis, my younger sister has underwent colonoscopy procedures and had precancerous polyps removed. Her doctors suggested she undergo a hemicolectomy because she had a very aggressive type of precancerous polyps in her appendix and colon and, since most hereditary colon cancer is on the right side, they did it to avoid any further issues there. She went through the surgery in February. My younger brother has not gotten a colonoscopy yet. We’re working on him.

My mother’s youngest sister died of colon cancer in 1983, at age 29. Even though we have a family history of colon cancer, the genetic tests on my tumor cells showed I had three out of four of the markers for Lynch Syndrome. Also, from what Johns Hopkins University Hospital doctors have told us, even though I don't have the mutated genes that they currently check for, it doesn’t mean that we do not have a hereditary syndrome; many times a gene is not found since they currently only check for four. We may have something that they have not found yet. Even so, I will insist that my sons start having routine colonoscopies at the age of 35 which is 10 years before my age when I was diagnosed. At the end of July I will turn 48.

2 comments:

Tina said...

Carol, I've read this over a few times, and I can't believe all you've been through! What a scary and trying time for you and your family. And your faith in God remains strong! I pray you'll never have to go through anything like that again!
Love and hugs!
Tina

Lindsay said...

Wow! I had no idea how much you have gone through. It is truly incredible. God has a special plan for you.