... and fits in my life?

Metastasized Papillary Renal Cell Carcinoma. Journey through cancer and how it feels and fits in my life. Those are the words that 2 years ago I used to describe the intended scope of this blog. I guessed, I was wrong and totally off target on the last part. Cancer does not fit in my life!!! It has however, commanded, shaped and overrun my life.

Two years ago I was told I had maybe 18mos to 2 years to live. And then a carrot was raised in front of my nose: "We have some new medicine that might slow or even stop the advancement of the disease." Reaching for that carrot has ruled my life and had a huge impact on my loved ones. Now, a little cost/benefit analysis.

Cost: I have lost 30 pounds, mostly muscle mass; I am no longer strong. I am left with a few functional hours in the morning and a few in the evening; forget about most activities from noon to 6ish everyday. My thinking is sketchy and my equilibrium is off. Fatigue. Fatigue. I cannot remember the last time I did anything for over an hour without stopping to rest, usually in a horizontal position. Fatigue most of the time. A friend gave me words that fit: it feels like a hole opened in the bottom of my heel and all the sand its pouring out. Maybe the biggest cost is the emotional toll on Jacki and Kate, the rest of my family and my sponsees.

Benefits: As of this week and the scans, analysis, I have shrinkage and even disappearance of some of the multitude of lesions in my lungs. I have a couple good new friends (thanks JT). 2 or 3 of my sponsees and my sponsor have been there every step of the way. I have grown closer to family: Getting along and getting to know my sister Gina for 8 consecutive days surpassed my imagination. The 6 days in a row of just my 26 yr old daughter and me together, no one else, is a precious miracle. I know of no other father with that experience. Jacki, my wife. Indescribable! In our hurricane, flexible as a willow, rooted as an oak and giving fruit from her inner orchard. I did not know this depth of love and I aspire to be the man one day at a time deserving.

The scans this week showed shrinkage of some nodules in my lungs, but one bad boy thought dormant in my lung but next to a rib, has tripled in size to 3cm, about 1.18 inches. Several of the others that have shrunk remain an inch, give or take. But worse to me is the growing nodule near the left side of my tail bone. Overall, kidney tumor is about the same, some tumors in my lungs shrank but a new large one has popped up, and now my cancer has metathesized into my bones. The cost out weighs the benefits.

The lead doc at NIH/NCI on my study is taking me off both drugs for a couple weeks - take a break. Jacki and I will consult with him and the rest of the team about what to do next. There are a couple other combos of drugs to try. It has been near 48 hours since last dose of the daily "Little White Pill", and I feel better already.
Bill