How I got here

Where do I start? Where did it all begin? Did it start during the MS150 in October '06 when I had my first ever leg cramps while riding my bike? The ongoing cramps since then make me think so.

In February '07, I had 4 days of "unexplained fever" in the 102-104 range. Was that the first sign? In April, I had another bout of fever just like the first. That's when I first went to a doctor. I guess my experiences begin then.

I went to my regular GP. She did some blood tests and found that my blood protein was low. An abdominal ultrasound was next, to rule out any kidney issues. It came back negative so I thought I was in the clear and this would all go away.

She referred me to a hematologist. I called her office and was shocked to hear the phone answered "Atlanta Cancer Care". I asked if I had the right number and was told that it's common for oncologists to also do hematology. This eased my mind. I never even considered that I might have a life-threatening disease.

More lab work was done, more complex tests than earlier. These spotted a "monoclonal light-chain". Of course, I had no idea what that meant but a bone marrow and/or kidney biopsy were discussed. Since the bone marrow was easier to collect, we decided to do that first. I asked what they'd be looking for. Amyloidosis or multiple myeloma, I was told. I knew that a myeloma was a form of cancer so got a "little" nervous.

As luck would have it, the bone marrow biopsy showed neither. So, I went back to being "fat, dumb and happy" again.

A trip to the nephrologist (kidney specialist) was next. There I was told the kidney damage could have easily been caused by taking too much Aleve and other nsaids. So, I stopped my arthritis meds and thought everything would go away. Nope, wrong again.

The nephrologist said it was time for the kidney biopsy. Okay, I'd been through a bone marrow biopsy and it didn't hurt...the bone marrow biopsy had to be worse than the kidney since they had to go through bone as well as some flesh. Wrong yet again.

It turns out that the kidney biopsy requires a "23 hour" hospital stay. That's what they do when your insurance won't cover a full day but it's serious enough that they want to keep an eye on you for awhile.

My first hospital stay

I got to the hospital at 11am for a 1pm start time...which got pushed to 3pm. Meanwhile, no food since midnight has got me just a little hungry. At first it was to be done using sonography...they got me into the room and THEN decided to do it with a cat scan instead; no explanation was given.

Into the cat scan room we go. They get me all settled and a nice doctor introduces herself and says she's going to give me the knockout drugs. Well, everything I'd read said these are done with local anesthesia; I'm a MAN so I told her I'd skip the sedative and go with just the local. She looked at me strangely.

Life lesson # 237: If someone offers you drugs before inflicting pain on you, don't EVER say "no".

Everything goes fine and I get back to the hospital room around 4:30, starving. Ten minutes later, lunch shows up...fried chicken and a few sides. I was hungry enough that it tasted good! I finished that meal and a short time later, another lunch comes through the door. Needless to say, I eat that as well.

It's now about 5:30 and dinner time. Yet another meal; I eat it and I'm no longer hungry:-).
Just as that tray is removed, yet another dinner walks in the door! One of the few times in my life I turned down a 'free' meal.

The next morning arrives with breakfast...cereal with milk and french toast. Being lactose intolerant means never drinking real milk...and french toast is usually made with milk as well. When I reminded them that I can't eat this, they offered to have grits and eggs brought up. I ate those and, still hungry, I ate the cereal without the milk.

Before leaving, I was told to call the nephrology office in two weeks to follow up. The appointment was made a few days later. Again, I assumed they'd find nothing and life would go on normally.

After the hospital

About a week later, the hematologist's office (I still don't think of her as an oncologist) calls and wants to see me in a few days. Naive me, I think she misses me and wants to chat. Yeah, right...it never occurred to me that this is how they give bad news.

In her office, she sits me down and explains that I've been diagnosed with amyloidosis and the typical treatments involve chemotherapy! Huh? Where'd that come from? I can't have anything serious wrong with me. I've been taking great care of myself for at least 10 years...and in '99, I began bicycle riding. I'm healthy as a horse; I can get on a bike and ride 100 miles...at least I can ride until the cramps begin.