New Next Steps

We spent a long, enjoyable weekend running around doing things without specific deadlines and without specific agendas; more than anything else, we were reliving some of the the "good old days" when we found time to run away more than a couple of times a year. Right now, I feel well enough that I hope we can continue to do this more often; we had a blast. First, on Saturday, we visited the Wyandot County Humane Society in Upper Sandusky, OH, a no-kill shelter that generally has as many as 30 equine rescue animals available for adoption. We've decided that Jeb's companion will need to come from there; it's a private shelter operating on grants and donations, and we admire their perseverance in hard times and good times.

Saturday afternoon we visited my friend S in Findlay and puttered around her yarn shop until she closed, when we all headed off to a local apple orchard to see what was available. We were able to get fresh-picked Cortlands and Galas; fall orchard tours and visits are a delight always, and we love to find new ones to explore. We've decided that after retirement we'll just throw the occasional picnic into the car and take off for a quick daytrip whenever we wish - nobody to answer to regarding time; no questions asked, just go.

Sunday we picked up some small pieces of furniture from my friend/sister C2; she's moving and we decided to buy some pieces so she wouldn't have to work around them. We raced home, picked up the car, and headed to Delaware, OH for the All-Horse Parade, part of the Delaware County Fair activities, courtesy our friends J and E who provided brats and trimmings and seats along the parade route for some 30 or so people. It was a blast, even if we didn't get home until 7:00 p.m. I felt tired but at least survived the whole weekend without major relapse.

I'm off the steroids now and the throat swelling and other problems have been alleviated, and I restarted Afinitor tonight. My doctors are watching enzyme levels and other cues like hawks; I'll be starting monthly Zometa injections again soon as the blood calcium level is one of the most critical indicators of overall stamina and health at this point.

Oh well, best just to wait and see what happens. I am grateful for the lovely weekend we spent together, and we are anxiously counting down the days until retirement on October 29. I am ready to have Saint H home, rested and working on projects that he wants to pursue. I'm sure a lovely time will be had by all.

The Buzz

Several weeks ago my dear sister J and I made arrangements for her to come visit. Saint H and I were upstairs last weekend to tidy and start getting things ready for her upcoming arrival next week. He came into the guest room when I was stripping the bed and said, "The bathroom fan is plugged with a wasp nest."

Further investigation revealed that we were, in fact, dealing with yellow jackets rather than just any old type of wasp. As I told J earlier this evening, I can think of nothing guaranteed to freak both her and me out than yellow jackets. Anyone who has grown up in the country knows that nature's little friends aren't always so friendly.

We grew up in a 2-story, 100+ year old farmhouse that our great-grandfather had expanded to its final size. My bedroom was next to the attic (or, as our mother called it, the "box room"). There were yellow jackets living in the attic, and at night they would crawl out through the mortise lock in the door and fly around or gather on the floor to sting through my toes the next morning. To this day I wear shoes or slippers around the house and seldom go barefoot indoors. I never go without shoes outside.

My sister was bothered by bumblebees and other stinging insects; one stung into her ankle and Daddy had to use pliers to pull it off of her. She'd had unsettled thoughts since we talked about it and I told her about the infestation; I'd had recurrences of my childhood nightmares that involves armies of yellow jackets streaming through the walls of my bedroom.

This afternoon I tried calling one of the big national firms with local offices; I was put on hold immediately. While I sat waiting for someone to return to the phone, I kept looking in the phone book and finally decided to hang up and call someone truly local. So the call went to a small firm whose home offices are in the tiny town up the road from us. First, I left a message. Someone called me back within 10 minutes, saying that they couldn't get to us until tomorrow afternoon, to which I agreed; a few minutes later, the friendly voice on the other end called back saying "one of our guys is coming back from a job right now and he'd be glad to stop by your house tonight." So I said "yes" of course, and shortly thereafter Dan arrived with his full beekeeping kit and protective clothing. He was here for over an hour and cleaned up after himself beautifully; he admired Mr. Duke (always a good policy), and turned out to be a near neighbor of ours. So, the buzz is - always use the local guys! We'll certainly use them again.

Up In The Air

We're still up in the air about dates for the moment. We went up last Wednesday as planned for the simulation, and at the same time we hoped to get more details about schdule. Nothing, alas, seems to be so difficult as to get details at the moment - lots of things need to coalesce for all this to work out. I only hope that we find out more this Wednesday when we go in for the dry run.

I did break down and call the on-call oncologist at Cleveland Clinic yesterday afternoon; I'd been dealing with increasing amounts of pain, and the pain levels finally got beyond what I could tolerate. Turns out that I was, in fact, undermedicating myself - I wasn't taking enough of my pain killer, so I'm on a strict regimen to schedule the doses every 4 hours, 6 times a day. I think I can do it, as I've felt much better since starting this.

Today I went off to the county fair to pick up my entries. I received 3 first place rankings (the stole, the hat, and the baby sweater), plus 2 second place rankings (the socks and the vest). On the whole I was pleased, and the vest lost to friend M's Fair Isle vest ("Grant Street", Alice Starmore). It's a beautiful, beautiful pattern, breathtakingly well-executed, and she won Best of Class and Best of Show. Can't complain too much to finishing behind her!

Saint H and our friend R spent the day baling hay; I believe he said we have 120 400-lb. bales in the field, and we may get a few more scraped up from the remains. R has dairy cattle as does one of his friends, and they may be buying all this hay from us (woo-hoo!!) If we get a decent second cutting this year, we can put it up in square bales and keep it for our own animals. I wasn't sure we were going to accomplish a cutting at all; like so many others here, we've been afflicted by the weather; it's been too wet to get into the fields. Right now, even though it's above 90, it's not so terribly humid and it's not supposed to rain for at least a week. Great for hay, if nothing else.

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.

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!

Lake Wobegon Days

"It's been a quiet week here ..." - or multiple quiet weeks, rather. We keep waiting for the rain that's been promised and seems imminent, but so far have garnered only a little over an inch from all those hurricanes and fronts moving through. Given that my brother and sister both have had multiple rains with multiple inches involved during the same time period, I can't help but feel a little left out. We did escape the effects of Hurricane Ike's winds that devastated other parts of central Ohio and I'm grateful for that.

I'm beginning to see the familiar and detested signs of hand/foot rising again for the first time in months: little tingles in my feet; shiny, blasted-looking patches of skin on my thumb and great toe; itchy spots on my hands. A week's vacation from Nexavar will be beneficial; I'm just not sure when to start. It's a fine balance to strike - not to let it go too long, as the resulting sores on my great toe take a relatively long time to heal up, yet not stopping the dose too soon or too long, should anything else arise. I'm not good at second-guessing myself so will check with Dr. G.

Our favorite contractor Jerry has been working on the barn. We now have a storage area, and have installed vents, windows and translucent roof panels to lighten up the interior. The last tasks are addition of guttering and a tank for water collection; I've plans to get some solar-powered lights for the interior, and then we should just have to add horses and stir. Sounds good to me.

Numbers Game

Last week at our renal cell support group, we heard from Dr. David Sharp, an oncologic surgeon specializing in renal cell carcinoma, and specifically robotic surgery for tumor removal. He looks like he is 12 but has been in the business at least that long ... At any rate he quoted the most recent statistical estimates for renal cell: 2008, expected case discoveries, 54,000. 2008, expected deaths, 13,000. Mind you, when I started on this journey in 2000 the annual expected case rate was 38,000 and the expected death rate was 12,000. So in a few short years the reported incidence has increased by roughly 30%, and reported deaths have increased by about 8.3%. What's interesting about RCC is that it's generally an "incidental finding", that is, one goes to one's physician for something else and RCC is identified through nonspecific tests. It often shows up in CT scans for back pain, for example.

Discovered tumors also tend to be smaller than eight years ago, and the rate of partial nephrectomies has gone up as a result. Partial nephrectomies certainly lead to a better post-operative experience for the patient. Do I think that RCC is increasing in the population on its own? I'm not certain - I suspect that given better diagnostic tools, we may just be finding it more often, and earlier. The relatively lower increase in death rate I think can almost certainly point to better treatment options. It's a cliche, of course, but I think "living proof" applies here.

This beautiful piece of abstract art arrived at our house yesterday. It's an untitled work; perhaps it should be called

CAUTION: Remove hat before placing head under mower.

Saint H's beloved beat-up straw hat was knocked from his head by a low tree branch while he was mowing the lane yesterday. We suspect duct tape will fix it right up.

Thanks, Bro

Two summers ago my brother and sister-in-law came to visit. He brought me a surprise, a copper trellis he'd made himself (who knew?) The trellis sits this year at the north end of the porch distracting our view from the railings-from-hell that won't take a paint finish. Our hummingbird feeder hangs from the porch soffit just above it. And this year's crop of hummers have decided that the trellis is the perfect place to rest between feedings. It's a great view out of the dining room window, for sure.

Yesterday we decided to start putting together a commercial hoop shelter for all the farm equipment. Some starts and stops (I read instructions, he doesn't; and sometimes the instructions aren't very helpful and/or are downright misleading); then we got to the part that said "Lean the end rail against something permanent, such as a fence or tree, that is close to where the building will go." Friends, we have no fences. We have no trees. We finally pulled up the old S-10 pickup and used that to "lean" against. Himself is going off to Menard's tonight to buy an articulated ladder so we can get the cover on when the structure is done. Friend and sister C2 said, "Why doesn't he just stop by on the way home from work and get mine?" But who am I to stand between him and ladder lust?

All I know is, kneeling and bending to bolt together all those pieces of tubular steel made me feel every minute of my age, and maybe even older than that. It's a different type of ache than the usual - there's a mild glow of satisfaction to it, that at least I did something to get this way ...

The Latest Round

Yesterday found us in Cleveland for the next round of appointments. Once again, labwork was good; scans were stable. Lesions in the liver appear to be stable; the lesion in the right lung continues to increase in volume but not in size. I wish I knew more about the mechanisms of tumor growth so that I can understand better what this means. At this point I know that Dr. G is not concerned about it, so we're staying with the current regimen of Nexavar and attendant medications. Dr. G is pleased enough, in fact, that I'm not scheduled for the next set of scans until November! I've been on a 2-month schedule since January 2006, when I started on Nexavar. Somehow it feels like a "great leap forward".

I worked with a new nurse for the C/T who asked, "Have you had a C/T scan before?" When I stopped giggling, I started mentally adding up how many scans I've had since 2000. By my estimation I've had at least 46, and there are probably more that I don't remember that took place in hospital or under emergency conditions. I'd like to say, "That should be enough for anyone" but I know I'll have to keep up with them for the rest of my life. Hmm, 2 450-ml bottles of Redi-Cat barium sulfate solution for each test - translate that into gallons and that's enough to kill my appetite permanently.

Saint H spent part of last weekend mowing and raking the last of the hay, and our buddy Rex arrived Monday night to bale it. He finished up about half an hour before storms hit; talk about making hay while the sun shines! We ended up with just short of 11 tons of hay - not bad for the first effort. We should get at least one more cutting off before the season's over.

We're In Our "Hayday"

Last week I saw Dr. SC for the usual blood tests and office visit. There has been little to talk about at these sessions lately; my test results have been stable and we've had no reason to consider making changes to any meds or routines. At Dr. G's and Dr. MC's request we added complete thyroid tests, still trying to determine what caused my bloating/discomfort/fatigue in spring. The tests indicate an elevated T4 level (12.8; normal is 4.5 to 11.2). So now I'm a bit confused: I'm being treated for hypothyroidism, yet the elevated T4 may indicate hyperthyroidism. Oh well, that's why they're doctors and I'm not - I'll let them figure it out. I'm sure the topic will come up at the next scheduled appointment with Dr. G.

We literally sweated out our first partial crop of hay last Saturday. The weather cooperated beautifully: long, cool, wet spring and early summer resulting in lush growth, followed by a clear string of 4 hot, dry days. The dry spell coincided with a friend's availability both for equipment and expertise, so after a day of mowing and a day of raking, he and Saint H brought in our first half-crop of bales with 4 hours of concerted labor on Saturday. I kept busy supplying the drinks and food. The bales smell fabulously green and sweet, a treat I've yet to tire of. While the baler was making its last round we scared up a fawn that had bedded down in the north edge of the pasture. We'll be leaving a strip unmowed so that the deer continue to have some cover. With luck and continued good weather we'll be able to get the rest of the hay in this week.

I'm playing with a new camera, a Canon Powershot SD1000 Digital Elph. I'm quite pleased with the images I'm getting - the camera makes me look like I know what I'm doing! I "captured" this dragonfly resting on the sweet flag we planted at the edge of our pond. Male common whitetail, anyone?

"Incurable Disease"

Yes, both Saint H and I have fallen victim to an insidious disease: tractor sickness. You may recall that last year I found, and bought, a Ferguson disc and a 3-point post auger at an auction, for use with our beloved Emma. We went further, then, and joined Ferguson Enthusiasts of North America and dutifully read the "Ferguson Furrows" newsletter. We generally look at the articles and check the events schedule, realizing dimly that this illness is managed only by occasionally seeing other patients and the inoculant, the tractors themselves. The newest issue had a terrible effect on us: several Ferguson items for sale in Mansfield, Ohio, just a short drive away.

We called. We drove. We drooled. We wrote a check. We added a Ferguson side delivery hay rake, a Ferguson 2-bottom plow, a Ferguson cultivator, a Ferguson tractor jack, and a Ferguson belt pulley to the collection. As we drove home, Saint H said only, "I'm stunned to find all that in one place." Amazing to think that, once we get it home, it will all be in our place.

This is the type of illness I can enjoy!