System vs Symptom

Just as patients have their individual reactions to disease, so do doctors have their individual approach to patients. I've had fabulous care, indifferent care, and terrible care from the many doctors I've met since I was diagnosed. I am very lucky to get nothing less than fabulous care from my principal medical team of Dr MC, Dr SC, Dr G and their staffs and associates.

Aside from a doctor's personality, there is a very distinct difference in how one may be treated, between two types of doctors practicing medicine in the U.S. On the one hand, you have MDs, or Doctors of Medicine; on the other hand, you have DOs, or Doctors of Osteopathy. The Bureau of Labor Statistics provides a sketch of the difference between the degrees here. Each branch of training is equally rigorous and demanding; the emphases are just a little different.

You may ask yourself, does it really make a difference? I maintain that it does. Dr MC, my primary care physician (PCP), is a DO. Had he been my doctor when my blood pressure spiked in 1997, I know that he would have moved beyond "your genetic tendency toward high blood pressure has finally manifested itself", to ask "but why has it done so when nothing else in your life has changed?" And, as time went on, I doubt that he would have blown off my other concerns, as my then-PCP did. Things would be very different for me now, as early detection is the key to improved chance of long-term survival.

I am certainly not saying that all MDs treat symptoms only - it depends, of course, on the physician's personality and approach to medicine and patients. I am saying that it is more likely that a DO will see that symptom in terms of the body as a whole. If the patient is willing to ask questions (and not all are; I just happen to be the elephant's child) an MD might follow up; a DO will follow up.

Go ahead and ask your doctor what training path s/he followed. If you've been seeing that doctor for a long time, you probably won't be surprised by the answer.

Seeing The World With New Eyes

Friday while in Columbus I picked up a new pair of glasses. I've worn glasses since I was 9, can't see without them, and have had bifocals for about 8 years. I've worn them on a beaded chain for the last 2 years and can tell when I need to have my eyes checked - if they're around my neck more than on my face, my near-distance vision is gone again.

Saint H taught me how to slow down and look carefully at the world, shortly after we started dating (is that what over-30s do?) and I was working in the high-pressure corporate world. It was something I had to relearn - as kids, we were always "just looking" at things. Bugs and flowers were fascinating; we walked the fields with Daddy looking for arrowheads after a hard rain or after he'd plowed; we watched the wind whip the wheatfields into waving seas. When did I stop looking? At any rate, H made me slow down on our very first hike. I was speeding happily along the trail when I suddenly realized that he was still at the trailhead, looking at some wildflowers and bracket fungi.

In many ways RCC has made me look at my world again. I watch everything and am constantly surprised by the little things: a goldfinch diving past the dining room window for sunflower seeds; storms of swallows sweeping the skies over the pasture; rain-soaked foliage kissing the ground. I'm glad to have the chance to see these things.

Keep your eyes open - you'll never know what you're missing otherwise.

Social Butterfly

The best thing about frequent trips to Columbus is that I have many chances to see friends from when I lived there, or with whom I worked in professional organizations after leaving there. Today I had a chance to catch up over lunch with my friend Yarmando, database expert and knitter extraordinaire. I came away with a great new hat, plus a reversible cabled winter scarf. (Is it good to know one's head is the same size as a Donvier ice cream freezer bowl?)

Today's session at the James Kenny Road facility: blood pressure down to 133/73 (hooray), hemoglobin levels down to 11.4 (boo). My nurse said I'm to get Aranesp if hemoglobin is 12 or below, so now I know -- too bad one can't simply exercise to achieve the "right" level. No-o-o-o, we have to get the ol' shot in the arm. At least it's not a shot in the butt, thank you very much ... (insult spared for the mature audience, since we are generally blessed with other "fleshy parts").

I managed to scare myself on the way home, nearly falling asleep when about half-way there. I pulled off at a nearby state park, got out of the car, walked around, and woke myself up before starting off again. It isn't a long drive, just tiring. Maybe I'll have to nap at C2's before I start home, as well as staying the night before these sessions? Bummer! I hate fatigue!

Half Full? Half Empty?

I suppose that one might think, reading this blog, that I'm pretty optimistic about my disease state and what my future holds. I have to say that I'm optimistic to a point, but a heavy realist -

Metastatic renal cell carcinoma is now something that is considered a "chronic condition", rather than an immediate death sentence. It is, nonetheless, a death sentence of sorts - as one doctor wryly put it, "We consider you cured of RCC when you die of something else." At least now, through the wonders of science and new drug development, there is a chance for one to achieve stable disease status for some indeterminate length of time. The bell curve now goes far further to the right than it used to, and this has happened in just the last few years.

What's uncertain now is whether longevity can be measured in years rather than months or weeks - initial studies of Nexavar show an overall trend toward stable disease status in the 48-week range, for example. The cheerful news is that the studies haven't been able to be closed in many cases because the trial subjects are still living, so there isn't an endpoint.

Cancer is an amazing organism, though - we may generally expect that it will mutate itself to negate the drug-of-choice's effectiveness over time. That mutation will be seen on an individual level, of course, as one's own body determines how the cancer will progress, how effective the drugs are, and what side effects one might have.

So, in my case, while Nexavar is working now, there will come a time when it doesn't, when the cancer outsmarts the drug. Tune in next week, as the old radio series used to say - or next month - or next year, whatever. In the meantime: Hey, waiter, my glass is half-full. Can you top it up?

Home Again, Home Again

The trip is complete and I'm back on my couch with Duke snoring at my side. I'm fatigued (like that's different from usual) but it's a good fatigue - lack of sleep offset by lots of laughter and giggling. A pleasant time was had by all. I highly recommend Holland MI as a vacation spot - very walkable downtown, lots of interesting shops, good food, and live music on the streets in summer evenings. For wintertime visitors: the downtown sidewalks are heated. No kidding - 58 miles of underground piping pump warm water to keep the sidewalks clear. There are two bookstores downtown, Lake Macatawa and Lake Michigan to the west, and three yarn shops that we know of in town - what more can be asked? (And yes, Virginia, there are wooden shoe factories.)

I met Galina Khmeleva, the queen of Orenburg gossamer shawls, at the festival. I had started an Orenburg warm shawl last week, in part because the construction technique is so interesting and I needed the mental challenge, and in part because they are irresistibly beautiful - I had never dreamed I would find her in Allegan. She's charming and enthusiastic; her tenacity resurrected the art of Orenburg knitting from certain oblivion following the breakup of the Soviet Union. Could anyone ask for a better epitaph, than to have kept a folk tradition from dying out?

Once the initial apprehension was gone, my blood pressure settled down and was reasonable during the entire trip. I am retaining the increased dose of Hydralazine just to be sure that it stays reasonable. Might as well enjoy life, after all, or there's not much point to hanging around ...

On the Road Again ...

(apologies to Willie Nelson; but you wouldn't want to hear me sing it)
I am, in fact, on the road, for the first time in months without Saint H, and with nary a doctor in sight. In company with knitting buddies MMH and M, I'm on the way to the Michigan Fiber Festival in Allegan. It's a great small festival, in a lovely little town, with just the right number of vendors to prevent exhaustion. I'll get to browse new patterns, pet fiber, and drool over spectacular tools and goodies. (And the Boy Scouts make great lemon shake-ups!)

We left yesterday afternoon, though not without a couple of hitches. Not least, unfortunately, my blood pressure was yo-yoing and I ended up consulting with both my family doctor, Dr MC, and Dr G in Cleveland. My diastolic pressure has been bouncing around; that's the key to tracking internal bleeding for me and that's certainly not something I want to repeat. With my medical history, there is something daunting about getting into a vehicle and travelling 5 hours away from home (creature comforts aside, all my medical support!) - I was a wreck. But, I have extra Hydralazine, my trusty pill splitter, and my blood pressure cuff, with instructions from both doctors to add dosages if I need them. As Dr MC said, "You can't stay home forever."

So, with my emergency contact sheet and insurance card in hand, I'm off to frivolity - I am looking forward to a great time.

Bodies for Science

One topic covered on Talk of the Nation (8/15) was the current round of exhibitions, BodyWorlds. Donated bodies are plastinated (all liquid removed and replaced with a polymer), stripped of skin, and exhibited in various settings and poses to illustrate individual anatomical features. There are many, many ethical questions regarding informed consent on part of the donors, and the profitability of the exhibits. Many callers and commenters mention how educationally powerful, inspiring and spiritually empowering the exhibits are.

During my last visit to Cleveland, Dr G mentioned jokingly how unique I am - having renal cell metastasize primarily to the liver is relatively uncommon; I've worked with so many drugs; I have definite sets of reactions to various classes of drugs - but of course all of us RCC patients are unique both in our cancers and our response to drugs. I told him that I have considered donating my body to science so that someone might learn more. His response was that, unfortunately, bodies "donated to science" often end up as everyday anatomy subjects and that one cannot currently specify how one's donated body might be used.

The BodyWorlds concept is one way, perhaps, that others might see what my cancerous liver looks like and how the long-term effects of RCC affect my body as a whole. Is it something I'd consider? Perhaps; perhaps not. I think I'm doing the right thing, right now, to be open to clinical trials as much as possible - I know that I'm contributing to a "body of knowledge" in this way, so to speak.

Medications have been adjusted (more Hydralazine) and I'm feeling better. I suppose there will come a point when something stops working and we'll have to find another combination of blood pressure meds that work, but that's not unexpected for "normal" people either.

Equal time

Marmaduke is a camera hog. Maggie is not. But I thought I'd better post a picture of the other fur-covered child, in the interest of fairness. Maggie came to us from a friend; she was one of about 20 kittens born on their farm in spring of 1992, and we needed a kitten. (Does one ever need a kitten? Of course. Ask any kitten). So here she is on her first day at home, June 15, 1992.

When we brought her home, age 3 months, she weighed less than a pound and fit into Saint H's hand. At 14, she weighs just over 6 pounds and is a little larger, but not much. She's definitely got the tortie personality - a little standoffish, very bossy, but quite willing to be fussed over. And you can guess who rules the roost - no contest between 6 lb and 19 lb; Maggie wins hands down.

The heat wave is finally over here, for the time being - no doubt we'll see more but perhaps not in week-long blocs. I've been blaming headaches on the weather, but on my trip to Columbus yesterday found out that my blood pressure had soared to 172/94, from its usual 130s/70s. Now I'm back to monitoring, reporting to doctors, and weighing my options on medications. I can increase my current dosage of Hydralazine, or might end up on yet another prescription. I'd like to avoid adding another pill to the mix, if I can - we'll see what the recommendation is on Tuesday.

The High Cost of Living, Part 2

Derek Lowe, a pharma researcher, has a phenomenal blog at In the Pipeline. Short, sweet, achingly to the point, his posts are a wonderful insight on the inside world of the pharma industry. His blog is well-organized, and has several posts on drug pricing. These are some of the best posts to date on the topic (in my opinion), and his entire blog is well worth following. Organic chemistry is way beyond my ken but I find his commentary on the industry fascinating and very approachable.

What's It Worth To You?
It'll Cost You
Costs and Benefits, Risks and Rewards
Check Please

I don't see Lowe as an apologist for the industry - far from it; his posts are thought-provoking and he pushes the buttons for industry and critic alike. I appreciate the cogent presentations.

The High Cost of Living, Part 1

So, what's involved in keeping me going?

Every day I take Cozaar, Nadolol, and Hydralazine to control my blood pressure. I take Prilosec OTC to combat stomach upsets. I take Nexavar for my cancer. I take Synthroid for hypothyroidism. I take Inderal to clear liver toxins. I take Ambien so I can sleep through the night. And a couple of times a week, at least, I take a very low dose of Dilaudid for pain.

Every two weeks I receive an Aranesp injection for anemia. Every four weeks I receive an infusion of Zometa to control my blood calcium levels. Every trip to Cleveland involves a C/T scan (currently every two months). And, of course, for every one of these procedures I have to have blood tests and labwork done.

Let's look at out-of-pocket costs: my prescriptions cost me about $60 a month. (For someone who never used to take more than aspirin, that seems like a lot.) Annually, I have a cap on costs for tests and procedures at $300, plus some costs that aren't covered; I generally hit the $300 limit within the first two weeks of the year of course, and have additional costs through the year. So let's say that I can plan on paying out $1700-1800 per year. Again, sounds like a lot particularly on disability.

Now, let's do the math without insurance: my prescriptions would cost me about $4,200 per month - Nexavar is $6,000 per fill, two months at a time. The blood tests and labwork would cost me about $3,000 a month. The injections and infusions would cost me about $10,000 a month. The C/T scans would cost me about $2,700 per month.

That's just under $20,000 a month. I wonder if I'm worth it - and I wonder just how in the name of pluperfect hell anyone can do this without insurance???

The Dukester

My friend MMH came visiting with her digital camera not long ago, and was accosted by this ham. Duke, you see, thinks he's a dog at the very least, or a small person, rather than a cat. He's decided that the 1850s settee is just his size. The upholstery sets off his coloring well, don't you agree? Nineteen pounds of one-eyed splendor and excellent company, that's he. He pads in from bed when I get settled on the couch for the morning, snugs up next to my thigh, and snoozes in place long after I start messing around elsewhere. At some point in the afternoon he heads for the settee and sleeps until Saint H gets home.

It's just been in the past couple of months that my body temperature has returned to something approaching normal. Previously I froze, always, and layered in sweaters and blankets even when it was 95 degrees outside. I still have my chilly moments and always take a shawl or sweater to restaurants (heaven knows they're almost too cold for other people too) but it's nice to be warm again. I can tolerate Duke's radiance pretty well still - he's never been a lapcat unless I am in a certain chair - but have been known to (gasp) push him away from time to time. That would have been unthinkable two months ago!

Mind? What mind?

My friend Swanknitter has an entry posted for today that perfectly describes how I feel sometimes. You know by now that I'm an avid knitter and that I knit lots of socks. Somewhere, somehow over the past year the knowledge of how to finish the toes with Kitchener stitch fled, and no amount of looking at diagrams and reading directions has so far helped resurrect that knowledge. That's sort of okay - knitting is pretty forgiving, and I like the way that star toes look, so I am not sending people out with great holes at the ends of their socks. But what happens when the morsel of memory has no alternative? Like, how to drive a stick shift? If you don't know how, you can't do it. So far I've been able to drive any vehicle put in front of me, including our vintage Ferguson TEA-20 tractor, but might that magic elude me too, without warning?

When I got home after my most recent hospital stay in March, I called my sister and brother to let them know that I'd been sprung. I probably didn't talk with them more than a few minutes each; I was tired, but wanted to reassure them that things were back to pre-admittance normal. Rather than reassure my brother, he called my buddy C2 to see if I might have had a stroke - I spoke slowly, seemed to be confused, and at a loss for words. I have it on my mother's authority that I could talk before I could walk, so that's a pretty serious aberration.

I remember that it took a couple of weeks to feel more like myself, and that I was pretty frustrated by it. Coming up with a substitute that only makes sense at the very margins of sanity didn't seem to bother me - think "Lasix/bathroom" substitution posted a while back. Losing someone's name/face, or a common word or phrase in everyday conversation, makes me worry. I feel helpless and angry, and worry that I could slide into becoming a burden on everyone without even knowing it myself.

Our heatwave has broken for the nonce. I'm being entertained by barn swallows, a dozen or more at a time, sweeping the skies for mosquitoes and other pests in the airspace off the east side of the house. I know they're gathering up for their migration and I'll be sorry to see them go, but at least I get the pleasure of watching them in the meantime. Saint H and I refer to them as "the P-51s of the bird world" - one of my favorite birds.

On being a perfect patient

Every time I check in for a procedure, or am in the hospital, or see a new doctor, I get asked a set of questions. The questions are consistent, almost unvarying, and depend on my memory for answers.

Sometimes I'm not capable of answering those questions, and sometimes the person with me doesn't know enough details to answer for me. So I've made up a sheet that I carry with me at all times, that hangs on my refrigerator, that my friends have copies of ...

The sheet lists my name and address; my emergency contacts; my doctors, their locations and phone numbers; my diagnoses; treatments I've taken and the dates; surgical procedures and dates; allergies; medications and dosages. Nurses are happy to have a list to consult and, in at least two emergency room settings it's saved time and given ER personnel concise answers under trying circumstances.

I keep thinking of things I should add, like my blood type, height and weight, plus details about my mediport. It's up to me to think ahead - no exaggeration that my life could be at stake.