A Fifteen-Year Journey of Fear

It was a little over fifteen years ago--on November 30, 2004--that my family physician, conducting the routine (and much beloved) prostate exam, told me she'd "felt something" and wanted me to schedule an appointment with a urologist. She said it was probably nothing--but still.

So I made an appointment--and he felt the same thing. Advised a biopsy.

Which was far, far, far from being the most pleasant experience I've ever had. That occurred on January 11, 2005.

On Monday, January 18, I got a call. Positive. I had prostate cancer.

Like many other people who have never had the disease, I wasn't all that worried. I knew some people (my own father among them) who'd had it; I knew men who were clear for years after their initial treatment. I didn't realize then that all cases are different--that Patient A's experiences cannot predict Patient B's ... or C's ... or ...

My Gleason score (a measure of the intensity of the disease) was mid-range. A 6 (on a ten-point scale), so the surgeon at the Cleveland Clinic said it would be no problem to wait to have surgery in June, after school was out. (I was teaching English at Western Reserve Academy at the time.)

And so I cruised along. Moderately worried. Trying not to think about it.

On Thursday, June 9, Joyce and I were up very early (about 4:45 a.m.) to drive down to Taussig Cancer Center near University Circle in Cleveland.

Where I had a prostatectomy--removal of the prostate gland. Post-op, the surgeon told me, once I'd emerged from the fog of anesthesia, that things had gone well. No apparent problem.

Then ... a few days later ... an apparent problem.

The post-op pathology had shown I actually had a Gleason score of 9--about as high as you can get. He advised, a little bit down the road, some radiation therapy.

And so the journey commenced--a journey that continues to this day. What you need to know is that I'm no longer curable. All they can do is retard the progress of the disease.

Which they have done with two different rounds of radiation, a number of different meds (some--Lupron/Trelstar--having profound effects on my life), immunotherapy.

I am now seeing an oncologist at University Hospitals (Seidman Cancer Center--closer than the Clinic--more convenient), and I see him quarterly. I get a Trelstar injection quarterly. I get an injection of Xgeva (for bone strength) every two months. I get regular bone and CT scans.

I get regular blood tests to measure my PSA (Prostate Specific Antigen). I really shouldn't have any PSA (my prostate gland is gone), but prostate cancer produces the antigen, as well, so if there's a number, well, that means the cancer is active.

Mine is; it's moved into my bones.

My PSA--after immunotherapy and my most recent radiation treatment--has dropped, but my most recent PSA test (a few weeks ago) showed a small rise.

Here we go again.

I struggle not to think about it most of the time. I'm trying to do the things I love, trying to be with the people I love, as much as possible. I don't want fear to immobilize me.

Still ... there are times ...

I see my oncologist again in about a month, and before that I will have a series of scans to see if the cancer is spreading--and where--and to what extent.

Joyce's calm presence beside me through all of this has been like breath itself. Like the wings of hope.