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.

A Tale of Two Kitties

Life is returning to normal here, following emergency surgery for Marmaduke last Saturday. Duke, for those who don't know, can be summarized as a smart, cute, part Maine coon who lost an eye at six months to an infection and then moved in with us. He's a charming cat who thinks he's a dog, mostly; and last week when his empty eye socket swelled alarmingly we headed for emergency vet services at Animal Care Unlimited in Columbus. We've known Dr. Don Burton for years so it was an obvious solution to the holiday closing of our own vet's office. We left him in good hands for his surgery and went home to await the results.

We stopped for brunch in town and were heading back home in mid-Saturday traffic. We were slowing down for a stoplight when the passenger's window of a pickup truck right in front of us opened. An arm shot out, and a black-and-white kitten was thrown onto the pavement beside the truck.

We followed the truck as it turned to enter a local shopping center; the car beside us stopped and the driver hopped out to pick up the kitten. I dialed 9-1-1 and apologized but reported my emergency, including the idiot's license number, and left my contact information with the officer. We backtracked to make certain there was no carnage on the highway, then went home.

I was so angry I thought I would throw up. Why do people treat cats so terribly? I have always loved and found comfort in cats; in many ways they're my children. I contribute to some very good charitable organizations for humans, regardless, but I spoil my kids, darnit.

I haven't watched the papers to see whether an arrest was made, and I haven't been contacted. But I hope the 3 idiots in the truck were stunned that anyone would care about some poor little bundle, enough to try to get them punished for their actions.

In the meantime Duke's had his drainage tube from surgery removed, he's still playing it for a little sympathy, but he's over the worst of it. I trust he knows he's loved.

What Have We Got But Time?

Monday's treatment session seemed to be following its usual path - checking in for labs, moving on to appointments with the medical powers-that-be, culminating in my Benadryl-induced nap. There was a jarring interruption to this routine, however.

As trial nurse Lisa mentioned in our appointment last week, "Chemo time is like gold here - a scarce resource. I want to get your schedule set at least six weeks in advance so we have the best chance to retain what we've got established." Sure, there are times I feel like we're cutting it a bit fine, but on the whole it's all manageable and works well for patient and personnel alike.

What with one thing and another our arrival in Pod 1 for treatment was delayed by about 40 minutes, and the usual wait ensued for my custom-blended infusion to come from Pharmacy. I was settled in with my knitting and Saint H had something to read. Suddenly the woman in the next bed began shouting for the nurses. "I was scheduled to get in here at 9:30 and didn't get brought back until 9:45. I've been waiting an hour. I do not have time to wait around like this. You get this thing out of me, NOW!" She continued to rant at the nurses with almost hysterical fervor. She refused to be calmed and, at her insistence, her IV was removed and she stormed out.

I think we were all rather taken aback. I certainly don't understand the motivation for her outburst - was it a first treatment? Was she frightened? Was she not adequately prepared by her oncologist about what she would be going through, and why the recommended treatment course was being pursued? Did she not absorb anything beyond the diagnosis?

Whatever the reason, I see no cause for the nurses to bear the brunt of her unhappiness. I think it's fair to say that she doesn't have the same type of relationship with her oncologist that I am fortunate to have with mine.

If I had a nickel for every minute I've spent in waiting rooms and in limbo since my diagnosis, I'd be a very rich woman now. Come to think of it, I guess I am a very rich woman - after all, I'm still here.

"I've Fallen and ..."

Last week I was bustling around, dashing for a phone or some such nonsense; I got my feet tangled up with a small footstool and pitched sideways into a pile of knitting projects (good) and an iron-bound antique trunk (bad). My shoulder took the full force of the blow against the trunk. I saw stars, I said bad words, and then slowly got to my feet again and called Saint H in from the pasture. I couldn't feel my right hand and couldn't breathe very well.

He checked me out carefully - large swelling at point of impact accompanied by a bruise that started showing up within minutes; shaken up but otherwise okay. So far the bruising hasn't fully developed and I think it will be a doozey, and my arm protests if I try to raise it above shoulder height perpendicularly to my body, but it could have been much worse.

While I've never been exactly graceful, I've always had good balance and for the most part have managed to stay on my feet when I've lost my balance temporarily. Several times in the past few years, though, it's been quite different. If I've been in the hospital for more than a week I'm very unsteady on my feet when I get out, and I've got scars on the bridge of my nose and my upper lip to prove that, from two separate falls. I often feel very disoriented now when I fall, and I seem to be less able to save myself from falling.

I know extended stays in the hospital contribute to muscle weakness. Maybe the rest of it is age, or maybe I'm starting to get scared of falling since I've hurt myself a couple of times. I can say, based on my experiences, that I'm less likely to laugh at the cheesy Life-Alert commercial now. It's not so funny when you're down there yourself.

Kick In The Teeth

Well, crap. Last week, insurance paperwork, billings and all from the first of the year finally worked all the way through the mill and I sent off the usual $900+ check to Cleveland Clinic to settle my annual out-of-pocket requirements. Hooray, no more unknowns, just the usual copays, prescriptions and incidentals for the rest of the year.

But wait! Yesterday I went to the dentist for a regularly-scheduled cleaning, and we found yet another cracked tooth. The rear right lower molar has cracks in all four directions, plus a couple of chips, plus decay along the edge of a filling that went in about 3 years ago. That's 3 cracked teeth in the last 2 years, folks. Some of my other teeth are now developing chips on their cutting edges, too. And the remedy for a cracked tooth, of course, is another crown. Crap!!!

Vivian asked, "Do you grind your teeth?" "No, I don't think so ..." "Well, what about dry mouth from your medications?" Oh, yes, indeed - what about dry mouth?

Dr. K doesn't think that there have been any studies about the relation between dry mouth, cancer medications, and dental problems. I'm ready to believe it, though - I have always taken care of my teeth, and I'm stunned by the amount of dental work I've had to go through in the last 3 years. Saliva acts as a lubricant, and without it the teeth bang against each other - grinding without grinding, as it were.

My schedule stinks, as does my bank account; I'm going to put off getting the crown as long as I can. For now I've got a prescription toothpaste, Colgate PreviDent 5000 Dry Mouth, Biotene mouthwash samples, and strict instructions to brush and floss religiously, and chew carefully. We may look into some sort of mouthguard as well, in the meantime. And I think I'll start doing some reading up in the dental literature too. At least the toothpaste doesn't make me gag, so far.