March Madness

I've been in this fight for nearly six years now, actually I was diagnosed with FAP six years ago this week. It was during the March Madness basketball tournament and I remember because I spent six days in the hospital undergoing testing to see just what organs this awful disease had decided to affect and figuring out what steps to take next concerning treatment and prevention of cancer (we didn't know then that it was too late to prevent cancer, I already had developed stage 3 colon cancer). ANYHOW, I watched every bit of the last week of the tournament from my hospital bed. I had been admitted from the emergency room after spend hours and hours there because I knew something was terribly wrong and I would need to be admitted. Thought I'd be smart and skip the step about going to the doc and just go straight to the hospital. BIG MISTAKE but that's another story. It's also why I am not treated at the local hospital anymore, I'd rather travel 3 hours to the medical university. After arriving in the ER at nine o'clock in the morning I was finally admitted to the hospital at midnight, maybe even later, and of course this hours after an ER doc told me if my potassium level dropped another point I would be leaving the hospital with a toe tag. This also an example of why I travel to the medical university.

It was a very weird week. I shared a room with an elderly diabetic African American woman and I so enjoyed it. We watched the Golden Girls on TV. We laughed a lot. This makes a big difference. Her friends laughed too. I'm a big fan of laughter. There were so many tests and x rays for me that week, but after the first test, which was the colonoscopy, we had a name for my disease. Familial Adenomatous Polyposis, FAP. Very rare. Very dramatic. But it explained a lot. The constant anemia, the extreme fatigue. The pain in my gut that I'd had for over a week with no relief. But it also left a hell of a lot of questions. Where'd it come from with no history of it in my family? How would this affect my life? What about my siblings and children? How will we treat this? I'm still working on answers to these questions. Some have been answered. Some answers have changed and some questions have changed. But there is a constant in all the madness. Laughter. Laughter relieves so much of the emotional and physical pain. Laughter keeps me in the present moment, or brings me back to the present moment if needed. Laughter heals my soul. And the best thing is.....laughter is free!!

CT scan results

I had my first post operative CT scan on Monday and am so happy to report the scan shows No Evidence of Disease, a state we call NED in the cancer world. So I am very happy to be 'dancing with Ned' still after five long years! The doctors all agree things are going quite well. My blood work looks great and I am not anemic at this time, a condition I struggle with quite often. The trips to MUSC in Charleston are long and exhausting so I have started staying down there an extra day to make the drive back home less difficult - it's about a 3 hr drive. I attend all of my doctor appointments alone, this is my choice, unless there is sedation involved. I may complain about these visits sometimes but in all honesty, I couldn't ask for a better facility to treat my illness and I totally trust them to take care of my boys too. My surgeon is one of the most 'good natured' and people friendly physicians I've ever met, and believe me I've met a LOT of them. His primary concern upon every visit is my comfort level and that means a lot to me. He knows me very well and doesn't even need to look at my chart when I am in office with him. He remembers it all over the last five years.

Post chemo

I wrote the prayer that opens this blog just after finishing chemotherapy for FAP related stage 3 colon cancer. This was a very ominous time for me. Wonderful that I was done with chemo - no more treatments, but at the same time terrifying that I was done with chemo for I had no 'safety net' so to speak. If there were some straggling cancerous cells in my body, there would be no more poison shot through my veins to seek these cells out and destroy their genetic makeup and keep me well. So what most people considered a time of celebration was for me a time of fear. I had no control over my body or what it did. At least with the chemo I felt I had a defense of sorts. But now I had reached a point where I had to have more than chemo to help me fight. And I found that 'something'. The prayer basically wrote itself.

I've been off of chemo for over five years now. I've struggled through numerous surgeries, procedures, biopsies, scans, scopes and x-rays. This life is not an easy one as the testing is constant and for the rest of my life. But I have adjusted. My latest struggle involved a bout of severe pelvic pain this past fall with no found reason. I was finally diverted again to the ileostomy. Life with an ileostomy isn't the most fun thing in the world but it's very possible, especially when it removes one's pain as it did for me. I do feel much better these days and we believe the pain was due to inflammation around the anastomosis or reconnected area. Monday, March 9th I will see my doctors in Charleston at the Medical University of South Carolina (MUSC) for check ups and CT scans to check for any changes. We're hoping there ARE changes indicating the inflamation has gone down and a reconnection might be possible in the future, if I decide to go that route. I don't know yet if I will decide to reconnect or leave the ileostomy in place. Luckily, I don't have to make that decision in a hurry. There is no rush on this one. Thank God.