Fifty-Seven

Yesterday was yet another birthday; another year has rolled past, adding another digit to my sum of years. (I won't speculate about whether or not I've grown in wisdom; probably not!) I have to say it's a lot better to keep adding the years! For all the lip service we pay to "accepting" that one's lifespan is unknown, I'd rather keep on than not. Anyway, here's to another year of discoveries.

Monday's visit to Cleveland Clinic involved meeting a new specialist intern who's spending time with the kidney cancer team. He went to great pains to reassure me that Dr. G is still my principal caregiver, and that he hoped I would trust him to treat me as well as any other Clinic staff member. I congratulated him on being chosen to work with the best available (in my no doubt biased opinion) and assured him that I would hold him equal to my expectations of care from Cleveland Clinic.

When Dr. G popped in a few minutes later, I asked him specifically how much growth we measured in last week's scan. Two of the liver tumors shrank slightly; the lung tumor expanded from 3.9 cm to 5.4 cm, and the total represented a 9% growth overall. So, I don't know if I'll be able to stay on the trial beyond this cycle (once I go beyond 20% they'd have to remove me). We can but wait to see. In the meantime, my vacation from side effects continues!

We've been enjoying a surprising month - no expectation of reaching a 90-degree day at all for the month, so very unusual in Ohio. This is shaping up to be perhaps the coolest July on record - right now we're about 4.5 degrees below the normal average high. We may be getting more rain (2" since Wednesday) through the end of the month; good and bad, since we'll soon have to cut hay again. Let's hope that we get a little slot of dry weather in the next couple of weeks.

"How Dry I Am"?

"We have to hydrate you for 2 hours before we can do your CT scan. Your labs showed a creatinine level of 1.38, so your glomerular filtration rate is 40, and the contrast dye will be too slow to clear from your kidney at that rate." The CT scan nurse let that sink in, and then said, "You didn't hear this from me, but next time, before your labs, drink water. I know you're not supposed to for the scan, but you're dehydrated. Your labs will come out better and we won't have to do this again."

Schedules at the Cleveland Clinic are built under the assumption that all will be well. In this case, I was thrown way out of whack, so I was 45 minutes late to my bone scan, didn't get lunch until 2:00, and didn't get to see Dr. G until 2:45. By being late to my bone scan I probably disrupted all subsequent appointments - not my fault, not the CT folks' fault, but the nuclear med techs were definitely unhappy about it. Every bone scan takes a minimum of 20 minutes and can take much longer depending on requested details and the radiologist's speed at reading them. So one wrinkle in the day's fabric begets another, and another ...

There was a bit of growth in the lung tumor but I still qualify as "stable" for the clinical trial. Hence, we go forward with it for as long as we can. Onward for the next six weeks!

An aside: I lived in Indianapolis for a number of years in the vicinity of 52nd and College. I was just up the street from the home of Frances Farmer, and around the corner from the fabulous Red Key Tavern (haunt of Kurt Vonnegut and featured in Dan Wakefield's book Going All The Way). Its neon sign depicts the first four notes of "How Dry I Am." (Yep, those sight-reading skills from grade school have come in handy through the years; thanks, Mr. S!)

Aches and Pains

I might as well catalog what remains with me since going off Nexavar. I stopped using it in February when it became apparent that the tumor in my right lung was growing; I figured it would take some months to see what side effects would stick with me.

I still have some edema in my legs and feet, particularly my left foot. Perhaps this is related to the relative severity of hand/foot that I had in my left foot, whenever those episodes cropped up? At any rate, if I'm on my feet for long periods of time and especially if the weather is hot, or if I'm sitting still for long periods, my left foot invariably swells. The skin on my left shin is always slightly tender, and I've had swelling as far up as my knee on really bad days. Last week Dr. SC at OSU told me that most of his renal cell patients have swelling in the lower limbs, so I guess I should not be surprised. Whether it's a condition of the disease or of the drugs, I can't say. Since February the severity has gradually decreased, so what's left I can certainly live with.

I still have joint pain. Again, this seems to be a common and relatively permanent result of taking antiangiogenic drugs. It's controlled with Dilaudid, and I can live with it.

I still have fatigue. I generally get up with Saint H to see him off, and now I stay up for a couple of hours beyond his leaving so that I can give Duke his morning insulin shot. Then I'm ready to stretch out for a couple of hours; often I end up taking a nap in the afternoon, aided and abetted by Duke. I have been fatigued since long before my diagnosis, but it's gradually gotten better over the last four years. Generally, so long as I don't overextend, I can keep up with everything needed to run the house. I can live with that.

Today is lightly overcast, and tomorrow promises to return to real July heat and humidity. The fledgling barn swallows are perched in the shade on the back of the house, squalling to be fed and the adults are wheeling through the air obliging them. I can definitely live with that, too!

Time Marches On

Yes, I've gotten out of the habit of posting; in part because I'm uncertain how much I can say about the trial. And, I'm afraid, as a creature of habit, going without my laptop for all that time this spring broke my daily routine - I don't check my email daily; I don't read the online newspapers; I don't post to my blogs; I don't read my friends' blogs consistently. I'll try to be better about it ...

Monday's trip to Cleveland, the third treatment in the second cycle, brought an interesting observation. I can't predict how I will react to the Benadryl dose at all! I was deeply asleep moments after the stuff was administered, and stayed deeply asleep for the afternoon; it carried over as aching dopiness into Tuesday afternoon. I really dislike being subjected to that level of disorientation. But, having heard a description of reaction to the trial medication unmitigated by Benadryl, the discomfort is quite bearable by comparison. According to Nurse Vicki, the pre-meds were added to the protocol after several patients experienced wild fluctuations in blood pressure and heart rate, and respiratory distress of a frightening magnitude. She said, "It took two hours each to stabilize the two patients here who suffered from these reactions, and we don't ever want patient and family to have to go through that if we can help it."

I'd love to know more about how health professionals, the companies, the NIH and the FDA negotiate changes to the protocol as a clinical trial progresses. I'll be doing a little poking about; if I can find anything out I'll pass it along.

Shades of the past: We finally got barn swallows to nest in the tractor shed this year. Yesterday the first two of the brood fledged, following their parents to perch on the house gutters while the adults hunted. Last night at dusk Saint H and I were sitting on the front porch glider, watching them dive-bomb outside kitty Jezebel as she came from the barn to join us on the porch. When I was growing up, we always knew when indoor/outdoor cat Denny was coming back to the house by the dive-bombing barn swallows. I've been waiting for a long time to see this again!