Well, They Did Ask Me

"So, what do you think about this deputy sheriff thing?"

Over the past couple of weeks any number of my friends, acquaintances and former co-workers have asked me this question. News broke of a former county deputy sheriff, a suicide last month, who had in fact scammed friends, relatives and co-workers with a cancer hoax. The local police organizations had raised $20,000 for his "medical bills"; co-workers had driven him to appointments and picked him up after his "treatments"; they had donated sick leave when his own ran out in the course of his multi-year battle with 3 supposed bouts with lung, brain and testicular cancer.

Outward appearances were faked with weight loss, careful depiliation and selective use of tanning beds to simulate radiation burns. Autopsy results? No active cancer, no evidence of cancer, no evidence of surgeries, no nothing. Family devastated. Friends and co-workers embarrassed and angry. Local residents indignant. Those who don't like him are pointing the finger at the sheriff for lax supervision.

So, here are my thoughts: I do find it hard to believe that the family could have been unaware of this, as claimed, but I wasn't there and I don't have any idea how open the husband and wife were about health. Some people don't WANT to share all the gory details with their nearest and dearest, and some nearest and dearest don't WANT to know. You can't force involvement with someone who doesn't want to share, on either side.

I think co-workers can easily be left in the dark. Health is so very private; most patients provide the minimum of detail. If one looks the part, as this fellow did, people will accept what they're told, commiserate, and be thankful that they're not in the same boat. It would be easy to fool people and, unfortunately, it happens all too often.

I think people generally misunderstand HIPAA. Yes, one's employer can ask for information from one for administrative purposes. But the employer cannot directly query the provider unless one gives written permission. If the employee provides forged documentation, as in this case, and does NOT give written permission for the employer to consult the records directly, as in this case, the employer has no way of verifying what has been said. It didn't matter that the sheriff had his doubts; he was in no legal position to demand the information, and that in no way reflects upon his supervision.

Finally, I think that this is a perfect example of why health care needs to be reformed. We are easily taken in by hoaxes and scammers because it's easy to believe that an individual can be faced with insurmountable medical bills under the present system. As I told one indignant friend, "Saint H and I are one life-flight and a few unexpected expenses away from bankruptcy ourselves, and I have good insurance and some money in the bank."

Those who complain about the people "who get everything paid for": All I can say in response is, Few people want to be uninsured, and nobody asks to be sick. Doctors are obligated to provide treatment by the terms of their training and licenses. What would you do, ask the under- and uninsured to just go die quietly because they somehow don't deserve proper care?

If I make a few friends, acquaintances and former co-workers angry because I tell them what I really think ... well, they did ask me. Sorry if my opinion doesn't match theirs, but those who know me well shouldn't be surprised by this.

TMI?

Some of my friends have sent emails, concerned that I haven't been posting as frequently to my blog as in the past. Part of that's covered by my schedule: I'm asleep or otherwise out of commission for a couple of days for every treatment, and for the next few weeks I'm taking a couple of classes through a local Elderhostel program. Once I'm out of classes in mid-November I'll be back to my usual schedule.

The other part is a little harder to quantify: I'm bound by a verbal agreement with the drug company conducting the clinical trial to be discreet in discussing my participation, and I'm not to make any claims that I think I'm being cured or other unscientific deductions about my case. So that leaves me with observations on how I feel, what reactions I've had, anything that's verifiable. I think it's safe for me to say that I can report documented results and equivalences from one evaluation to another. I do wonder what constitutes "too much information" for the drug company.

I will figure out how to request clarification on this. I don't want to jeopardize their trial, nor do I want to jeopardize my participation in it as I think it's important to give back to the kidney cancer community. I suppose at some point there will be FDA guidelines about blogging for clinical trials!

Cycling On

Wednesday found us at the Cleveland Clinic for yet another evaluation set. As the appointments didn't start until 11:00 a.m., we chose to drive up early in the morning rather than staying the night before in Cleveland.

This time, to see if there were anything behind my reported "fullness" in my neck and slight difficulty in swallowing, I had two C/T scans scheduled, which seemed to make the day stretch even longer than usual. We bounced around from spot to spot (Saint H got in a lot of good step totals on the pedometer they're using at work for a wellness challenge), managed to get in early for every appointment, and topped off the day with a short nap while waiting for Dr. G to arrive with results.

The results were worth waiting for, believe me. First, the C/T scan of the neck revealed no growths or suspicious tissue, only the calcifications in my salivary glands that we already knew about. We're pretty much agreed that the problem is tied to dry mouth. Amongst the easy remedies: have water available at meals for small sips to help lubricate my throat, take small bites, and chew well to make certain that there's nothing left to "bulk up" on the way down. Well, these reflect good manners and general nutritional wisdom, so I'm happily able to comply with orders.

Second, all my labs are consistent. My hemoglobin levels are still low but have only just begun showing a drop below 10 (9.8 this time), so we'll be watching that closely every two weeks. All the other results are high or low as expected for someone with RCC, one kidney, and liver damage. Should I need to return to Aranesp injections, that could easily be accommodated with my treatment schedule. I've discussed potential problems with Aranesp here before so I won't rehash, but Dr. G decided (and Dr. SC concurred) that I would not likely fall under insurance strictures as both Cleveland Clinic and OSU comply with the strict application guidelines.

Third, and most gratifying, the scan results show net tumor growth of zero percent from the May benchmark. The lesion in my right lung is still growing, very slowly, but for the moment it's completely offset by continued reduction of lesions in my liver.

We always finish the appointment with a discussion of next steps, and Wednesday was no exception: I'll continue on the clinical trial, we're rank-ordering further treatment options, and we'll probably never do surgery again. Dr. G's broader assessment of surgery expanded this time from the short "probably not" of my last query. Though it would be nice to be able to excise the one active lesion and be so-called "disease free" for a while, he described the surgical process more fully. Basically, we'd be facing a lobectomy, with removal of at least the upper right lobe; lesion size and location are too much for a simple "wedge" excision. The surgery would involve a full horizontal abdominal opening, possibly a chest cracking, and way too much internal rearranging to suit my taste. In Dr. G's words, "For you, this would be a morbid process." Put it that way and my natural disinclination to surgery is increased immeasurably! It took eight months to fully recover from my liver resection, and I swore I'd never go through that again. Thank goodness my doctor agrees with me!

We left in the height of rush hour and got home at 9:00 p.m., with a stop for dinner along the way. We've decided the one-day trips with full appointment load are way too taxing to undertake again. Whoopee, more hotel points, I guess.