When In Doubt, Ask

One of the things I enjoy most about working with Dr. G and Dr. LA is that both encourage me to call or email with questions. Their staff are all attuned to the needs of the patients (for good reason they all wear pins emblazoned with the Cleveland Clinic square symbol and the slogan "Patients First"). I've never had a question or comment dismissed as silly, or irrelevant, or unimportant, and I've never had a call or email go without answer for more than a few hours.

Once we got home from Cleveland on Wednesday, I felt exhausted and was ready to go to bed. I spent most of Thursday in bed, with all muscles and joints aching incessantly, no appetite, and no relief in sight from Dilaudid. I felt somewhat better on Friday, but decided to call Nurse Shari. I left a message: had she any reports of similar reactions on Votrient or any other drug that I am taking, or any idea what this might be? About 3 hours later, she called me back: "I would say that any reactions to Votrient would have occurred much more quickly after you started using it, and your results Wednesday were so good that I can't attribute it to anything else. I have heard of a bug going around that starts with a headache and progresses to muscle and joint pain; the muscle and joint pain is persistent and constant. The good news is that it seems to pass off in a couple of days generally. I think that might be your problem." We both decided that this pattern fit with how I felt, and that if I didn't feel better after the weekend, I should call again.

Today was much better; I feel almost back to normal. I'm so grateful to have such responsive medical staff on my case. They are quick to respond, they're reassuring, they are always happy to answer my questions, and they all work together to include me in my medical treatment. All I have to do is ask.

All-Nighters

I've had lots of near-sleepless nights since the gamma knife procedure. That's due in part to the steroids, I know, but I've had a lot to think about since the middle of February.

When we left Cleveland Clinic on March 1, we had information on 4 drugs, a rough idea of schedule needs, and an assignment: choose the next drug I wanted to use by the end of the week. You may be wondering what goes into making such a decision, and I can tell you it's not easy. The four drugs we were looking at were: Votrient, Torisel, Avastin, and Afinitor. Here are some of the factors we considered:

Schedule - How quickly can one begin a new therapy? What might influence the schedule?

Risks - All of the drugs involve varying types of risk, though certainly better odds than doing nothing. Of the four, which posed the most immediate threat to me based on my individual response to the drugs I've taken so far?

Efficacy - What's the drug's mechanism of action and track record to date? Is it similar to drugs I've already taken, or is it something new that we'll have to monitor closely?

Side effects - Are the side effects controllable with other medications? Is there evidence of any new or particularly threatening side effect that I haven't encountered with other drugs?

Costs - What is the drug's cost? How much will insurance pay? How much will I pay out-of-pocket?

Other considerations - Are there some inherent constraints that will control access, schedule or other points on the list?

Taking these factors, we came up with the following concerns:
Schedule - In this case, Dr. G wanted me to start as soon as I could, possibly by March 8. The problem: steroids would preclude concurrent use of two of the four drugs, and my late-night driving adventure spelled the need for continued steroid use; therefore all four drugs return to the list of possibles. My start date: on or about my next appointment, April 2

Risks - Risk assessment is the hardest part of the equation and is closely tied to the drug's efficacy and side effects. Each person's reaction to a drug is very individualized. So, while I know that VEGF-inhibitors may increase one's risk for internal bleeding, not all VEGF-inhibitors cause me to bleed (so far only Sutent holds that distinction). Newly approved drugs try another approach, with a new drug pathway to try, the mTor inhibitor. My leaning is to exhaust all the drugs of a single class before trying something new; hence my inclination to go with Votrient first. But the most serious side effect of Votrient is the potential for liver failure, and given the liver damage I already have, this gives me pause.

Costs - I'm very lucky; these drugs are horrendously expensive and all require a "pharmacy override". That is, I must use my drug plan's special pharmacy service so that the cost benefits are spread over the entire pool, or else I must pay a good portion out-of-pocket. Heck, yes, I'll let them mail the drug to me and pay my normal co-pay.

Other considerations - Oral drugs can be mailed directly to me; drugs requiring an infusion (in this case, Torisel and Avastin) would be administratively harder to deal with. With infusions, the hospital or facility administering the drug probably would have to receive the drug. Would it go to their pharmacy, in which case would I have to pay more for it? It's not a scenario I'd like to test out just now.

So, my choice became "an oral VEGF-inhibitor", which leaves me with Votrient. As we don't have any idea how my body will react to a new drug, I'll be "baby-sat" off and on while I adjust to the medication and dosage level. I'll probably be traveling to Columbus during the day, sitting and knitting at C2's house. That way should I develop any problems I'm 10 minutes away from the OSU Medical Center, as opposed to being 20 minutes from the nearest hospital here and over an hour from the OSU Medical Center.

There you have it - a breakdown of what is, in essence, a life-and-death decision. It's not something to be taken lightly, but we can certainly weigh all the factors as part of the whole. Given enough information, I can analyze just about anything, I believe, and come up with a decision that I'm happy with.

I'm happy to say that my diaper rash has finally cleared up. Now I've got pitting edema in my lower legs. What I've read isn't encouraging but at least we're doing what we can to combat it. Will be interested to see what Dr. G wants to do when we go up on Friday.

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.

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.

Starting the Next Phase

I'm still not certain what I can and can't say here about the upcoming clinical trial, but I'd guess it's okay to say that we have a start date if all works out. I'll go in for screening on April 13, and if I pass the screening I'll start the trial on April 27.

I don't think I realized just how hard this had hit me, until we finally got the dates outlined. Such a relief! I'd been coasting along for over 3 years with only minor upheavals on Nexavar, knowing with some degree of certainty what each day would bring and what would factor into how I felt overall.

Imagine feeling terrible all the time without knowing why; that was the norm for me from 1998-2000. Being diagnosed with RCC was terrifying but it was also a relief - at least I knew what was wrong with me. Each step since then has had its own challenges. The biggest shock was the liver metastasis in 2003; and that probably comes closest to what I felt when Nexavar finally failed.

Yes, we all tell ourselves that we're being pragmatic and facing up to the fact that metastasis can and probably will happen, or that this or that drug can and probably will cease to be effective over time. Yes, we try to share information with other RCC patients and keep up our knowledge base. Yes, we do what we can to prepare ourselves for change and the next step. It's still not comfortable when the time comes.

I've been awfully depressed about having to face these changes. Maybe it's the equivalent of losing a job and being in limbo until finding another one. All that I know is that I'm glad to have something more definite in front of me now.

Tree swallows have returned as of last Sunday. Spring is offically back!

Waiting Game

I've been off Nexavar for nearly 2 weeks now and am waiting for things to settle down; I've been nauseous and achy. Is this an effect of going off the drug, or is this weather and exposure to the usual pile of nasty end-of-winter colds and flu?

I've been assured that a spot is being held for me on the clinical trial, but we don't know the schedule yet. The earliest I could start is middle of this month, but will more likely be early April to fall into line with the clinical trial six-week cycle. I'll first have to pass their screening tests which, at this point, we all believe I can do.

I've been huddled up inside today, nauseous and achy as mentioned above, watching the wind whip traces of snow around the house. Winter is holding on grimly here and March has been uniformly nasty and cold so far.

All in all I feel like I'm sitting around twiddling my thumbs, waiting for things to happen. While I wait I'm letting things grind around in my head - not exactly worrying, I guess, but making myself a little anxious about what's to come. Once upon a time I was pretty good at keeping myself all positive, all the time, while waiting for something to happen. It's been a long time since I've had to think beyond the next set of scans, so I hope I can get back into that mindframe quickly this time.

I'm So Stimulated

Gosh, what did you buy with your economic stimulus check? We came up with all sorts of plans for ours: fencing, gates, plants, tires, toilets - you name it, it probably made our list at one point or another. But I guess I'd say part of it, at least, is in my mouth as I write this. I spent two hours in the dentist's chair on Thursday and now have two temporary crowns in place. The real crowns, along with the final bill, come week after next. I think that appointment will only be an hour, oh boy.

Why is it that, when one is provided with unexpected cash, one ends up spending it? We had really intended to put the check in the bank (so we could pay it out again next year, most likely). And why is it that, once the check arrives, one manages to spend more than its face value?

In the end perhaps some other stash of money in savings will represent the "economic stimulus" sum. Needless to say we'll be spending more money regardless.

We went to the basement yesterday afternoon, when this parked itself over our house and the tornado sirens started going off. Fortunately it all blew over, leaving behind only an inch of rain or so, but it was scary while it lasted. I've always enjoyed thunderstorms - used to sit on the front porch swing in the midst of duck-drowners as a kid - but am terrified of tornadoes. These clouds were boiling and rotating. The urge to be outside, though, was almost overpowering. Yeah, I know it's not smart to stand outside taking pictures of storm clouds, but the skies were mesmerizing. We had to force ourselves to go inside.

Vocabulary Lesson

If nothing else, I know that to be physically challenged by an uncommon disease is also to be mentally challenged to learn more. I've learned about RCC; I've learned about the structure of medicine in this country; I've learned about clinical trials and drug discoveries; I've learned about my own limits and how to make compromises between "want to do" and "able to do". Along the way I've discovered a whole new vocabulary. Sometimes I pursue new words out of curiosity. Increasingly, though, I find that I am doing research out of necessity.

This week I learned a new word: ascites. In clinical terms, it's a buildup of fluid in the peritoneal cavity caused by the liver's inability to process wastes. In more approachable terms, courtesy of Dr SC's lead nurse Kelly, "Think of the liver as a garbage disposal. Ascites is what backs up when the system's clogged."

I learned this one because it appears that I've developed it. We won't know for certain until I've undergone my usual round of scans this coming Wednesday, but I've got the classic symptoms: distended abdomen, feeling of fullness, loss of appetite, constant low backache, general fatigue. What makes this fatigue different from my normal level, you may ask? It's hard to explain, but I feel heavy, lethargic, and always uncomfortable. It could be worse; Kelly described the backache as "pregnant back" - I figure she should know, as she has twins. The backache is accompanied by gross distension of the belly, sometimes approaching "full-term" size. I've never been pregnant myself, so I can only distantly appreciate what every mother goes through.

I'm on a diuretic and have doubled my dose of Dilaudid. So far, after only two doses of the diuretic, my abdomen has deflated, my appetite has returned, and my backache has receded. Last night I slept the night through and I feel more energetic today than I have for a week.

When I encounter a new word these days, I think of "The Secret Word" on Pee-Wee's Playhouse. "Scream real loud!!" What a way to learn!

Get Hep

I've been watching the unfolding drama: tainted drug supplies, multiple deaths, international fingerpointing, lax inspection. At the very least the furor over Heparin manufacture in the last few months has outlined a disturbing trend. Heparin is a life-saving drug that figures into treatments for dialysis (and, like me, for patients with Mediports) every day. If something is that vital to survival for people whose health is already compromised, why isn't more done to control its manufacture and its safety? I must say that finding out where Heparin comes from, pig intestines, isn't disturbing in any way to me; lots of valuable medicines come from animals. Finding out how Heparin is processed, again, might not be of concern; good for those enterprising Chinese families who make the effort to provide the raw material. Finding out that the supply chain is so limited gives one pause - why do we have only two manufacturers in this country? Finding out how few checks and balances are in place is frightening. Finding out how little the FDA can do to perform the necessary inspections is infuriating. I think it will be interesting to see what happens next.

Yesterday Saint H and I put up the martin gourds for this season; keep your fingers crossed that this will be the year for our colony to start. We have 16 tree swallow eggs and 4 bluebird eggs in the nest boxes here. We walked through the woods, finding blue and yellow violets, May apples, Solomon seal, and bellflowers (as well as poison ivy, Virginia creeper, and garlic mustard). Much to my surprise, about 50 trees have survived years of standing water in the south field - they're not big, but they look pretty robust. I wish I had the stamina and determination that plants show!

A Boy and His Cat

Well, we must be heading into spring at last. The snow is nearly melted, though we have a lake in the pasture for the moment. The bluebirds are courting, so Saint H spent this morning cleaning out the nest boxes. Jezebel merrily accompanied him on his rounds, making sure that he got everything done. I guess since we don't have a dog yet, she's happy to stand in. Next weekend we'll probably put the martin gourds back up - here's hoping this is the year they decide to move in.

Tomorrow I will call Dr. SC's office to schedule a C/T scan and a bone scan, on Dr. G's recommendation. I've been having intermittent twinges under the right side of my ribcage, rather like muscle spasms. These were occurring only when I bent into certain positions (putting on shoes, for one); in the past couple of weeks it's been a more general ache. When I finally made it to my appointment with Dr. SC last week, I mentioned this; his nurse suggested I might have a hernia along the track of the abscess that developed after my liver resection. Dr. G decided that I should have it checked out now, even though I'm due to see him in a couple of weeks. It's not terrible and it's probably nothing to worry about, but I'd much rather know what's going on than not. Oh well, I've already met my deductible for the year ...