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.

How Things Are Going

I finished my course of 10 radiation treatments on July 20 and returned home on the 21st, completely exhausted and troubled with pain in my right shoulder. I spent much of my time the remainder of the week asleep, as the exhaustion was completely debilitating. I did have a birthday, I think, but I mostly slept through it. My friend Swanknitter had made arrangements to visit from the 25th, so I was happy to be awake when she arrived. I was still absolutely flattened by the pain, which seemed not to be responding to anything. I had been switched from Dilaudid to an Oxycontin/Oxycodone combination and I was feeling quite ill from the diminishing effects of the radiation, the new painkillers, and other accumulated problems. I was finally feeling better from the radiation by the 28th, to the extent of having an appetite and getting some energy back.

Dr. G had asked that I come back for new scans on the 30th so we'd have a new baseline set. Swanknitter and I finished up our visit on the 29th and she returned to DC to head home to Australia from there, and we headed up to Cleveland that afternoon. The scan results weren't great but they weren't hopeless either: I'd been off all forms of treatment since end of April, so no surprise to see progression in the lungs. Test results also showed that I had high blood calcium levels, and that was probably to blame for the complete exhaustion and slight confusion I'd felt after getting home. I was given a two-hour, two-liter infusion of saline, and an infusion of my old friend Zometa.

Dr. G also made arrangements for me to meet with Dr. R of the Pain Management Clinic. Her recommendation was to continue on a reduced dose of the Oxycodone, the dose of Oxycontin that I was already on, and to add to this a prescription for Neurontin. Dr. R's nurse Brenda said, "As it is, nobody knows how it works or what it does, but it works and that's all that most people ask."

I was able to fill my first month's prescription for Afinitor before we headed home, and Saint H handed in my Neurontin prescription to fill at my local pharmacy after we got home.

I sat down last night and wrote out my pill schedule since so many things have changed: we start at 7:00 a.m. and can run continuously through 24 hours every 2 hours, if I'm awake, though the blessed Brenda says "we don't set alarm clocks to take pills, for heaven's sake!" I like that thinking. Also, last night having been the first complete cycle including the Neurontin, I'm thrilled to report that I have very little pain in my shoulder for the first time since November of last year. It's great to be witness to one of those little mysteries of medicine; I don't have to know why Neurontin works, either; just the fact that it does makes me happy. I look forward to improved conditions in the coming days. Wah-hoo!

Hankies at the Ready

To judge from TV commercials, we need to lose weight - buy a workout machine - consolidate our credit debt. We burst into song over low-priced car insurance. We bond with our families over pizza or fried chicken, often in the new family vehicle. New cleaning supplies and the right deodorant are the keys to a happy home. Our women search obsessively for new wrinkles or unwanted facial hair. Our men worry about sexual performance and fret over falling hair. Everybody has dandruff and yellowed, stained teeth. All we need to do, it seems, is buy the right product and our problems are solved. But then, once the products are bought, there's a new twist:

We're a nation of victims, trembling in the corner. We've been pushed into that corner by Big Pharma, or Incompetent Medical Practitioners, who have robbed us of our rights, our dignity, our fortunes (aided and abetted by Heartless Insurance Companies). We would surely be crushed in that dark corner, were it not for the selfless Personal Injury Lawyer, looking straight into the camera and solemnly promising to Come to the Aid of Injured Citizens.

Last summer a new appeal was launched on the airwaves: "If you or someone you love has suffered from Jaw Death ..." (cue dramatic music). Hmmm, our old friend osteonecrosis of the jaw. A class action suit was filed April 10, 2006, against Merck, maker of Fosamax. Hmmm, Merck, maker of Vioxx. Yummmm, deep pockets and a record of settling lawsuits. Parallel class action suits have been built and subsumed into the Fosamax suit for other bisphosphonate drugs Actonel, Aredia, Boniva, Skelid and Zometa. Didronel and Reclast are mentioned as bisphosphonates but I've not seen specific suits for these products.

This site summarizes most of the available information on the disease and its causes, treatment options, and other resources. On the whole, it's well presented, especially as one emanating from a personal injury lawyer's office: no scare tactics, little overstatement, very straightforward (but don't overlook the handy form for more information)

But wait! Is this as risky as it sounds, when Mr. Soulful Personal Injury Lawyer is crying Real Tears over your plight? The University of Alabama-Birmingham has put together an excellent site on osteoporosis, which includes this reasoned risk assessment. Kind of like putting sour cream on chili, to my thinking.

I'm not saying that any drug is completely safe, that any pharmaceutical company is blameless, that there isn't smoke without fire. I find it interesting that, after the initial flurry of ads, I've never seen another one. Did they not get enough response to continue? One can only hope ...

Maintenance and Monitoring

We've returned to life as normal following the snow, so yesterday I went to 2 appointments in Columbus that were rescheduled from the previous week. First up in the morning was the regular Aranesp/Zometa tango, with a twist. My hemoglobin level was 13.4, so again, no Aranesp needed; but this being the third session with elevated levels, I'm officially off Aranesp for the first time in over 2 years!

In the afternoon, I met with Dr SC for the first time since summer. He informed me that my creatinine level is slightly elevated, indicating that my remaining kidney isn't working as efficiently as it has been. As Zometa's side effects include depressed kidney function, he is taking me off Zometa, substituting a 4-week followup for labwork in place of the infusion. We'll continue labwork on a 4-week rotation, and resume Aranesp and/or Zometa as needed based on monitored results. I'll still have to get poked, of course, but I won't miss the injections and infusions. I suspect my insurance company won't miss them either: without these drugs my maintenance costs drop from $20,000 a month to about $9,000 a month.

What did I do with the 4-hour break between appointments? My friend and sister Mary drove down with me, so we met friend CR for lunch and discussed her involvement with the Central Ohio Fiction Writers. Then Mary and I checked out cookware at TJMaxx. Her kitchen remodeling is nearly finished and she's got to replace some pans to work with her new cooktop; I need to replace some of my 30-plus year old bakeware. Shopping, oh darn ...