Lies, damned lies, and statistics - Part I

In a National Cancer Institute report dated 1998, kidney cancer accounted for approximately 28,000 of new cancer diagnoses per year. By 2003, that number had risen to approximately 32,000. Now, in 2006, the estimated number of kidney cancer diagnoses is 38,890. [You can find a dizzying array of statistics at the NCI SEER site] In 1998, kidney cancer was considered a "man's disease" with a 2:1 occurrence rate. Now, the incidence among women is rising, with estimated new cases for 2006 at a 1.73:1 ratio.

Is the incidence of kidney cancer really climbing, or are diagnostic techniques simply getting better? Are more women developing the disease, or is the medical community simply more aware of kidney cancer and more willing to consider it as a possible diagnosis? What can statistics really tell us?

Statistics, like the Bible, can be used to argue or justify nearly any position. An excellent review of the impact and meaning of statistics in a cancer diagnosis can be found at Steve Dunn's Cancerguide. Evolutionary biologist Stephen Jay Gould wrote a fabulous article on statistics, "The Median Isn't The Message", that both demystifies the statistical process and provides a stubborn message of hope.

Well, I'm stubborn, and I'm still here 3 years after the second diagnosis. I haven't bothered to look at the statistics on that yet. I'm too busy knitting to bother (finished a pair of socks yesterday; 4 pairs to go) ...

We are experiencing technical difficulties ...

I have crappy veins. They're little, they roll, they go flat, and they shrink in terror when a needle approaches. So the best thing that came out of my flirtation with high-dose interleukin 2 in January 2005 was the implantation of a dual lumen mediport. Hooray, no more multiple jabs, no failed sticks, no tears. I love my mediport. My nurses love my mediport.

Monday night I noticed that my mediport site looked different and that I had a dull ache under the site. So, I called Dr. SC's office Tuesday, and was able to get in this morning at 7:30. We think that one of the port catheters has kinked or rolled; it's visibly changed position. I had x-rays today and will go in for radiation flow tests next week. In the meantime I can't lift anything. Oh, darn, that will make housekeeping difficult won't it? :) I guess I'll have to knit instead.

That's a good thing - I have 5 pairs of socks, a sweater, and a shawl in various stages of construction, and those are just the projects I have in the living room. We won't talk about the tubs of yarn upstairs. I have multiple pairs of socks in the works at all times so that I have small portable projects with me while waiting for doctors' appointments. Lots of my friends have gotten hats and socks out of my appointment schedule.

Thoughts upon hearing the diagnosis

What do you think when you've just been told you have cancer? The scene is burned in my brain: We're in a little curtained cubicle in an emergency room. It's about 5:30 in the morning. I'm sitting up in the bed, and Saint H is huddled on a bright orange plastic chair. Saint H is ghostly white and staring. And all I can think is, "dammit, I don't have a horse yet." That set the tone for most of my reactions. I was angry and determined that I wasn't going to die - no hey-presto-poof! for me, thank you. We had plans, and we had things to do, and I wasn't about to give up.

That was nearly 6 years ago. Since then, we've bought our little farm, and we've built a house and moved to the farm. Both of us grew up on farms and had talked for 10 years about starting one of our own, and so we did it when we had the chance. And we've visited friends in Australia - we highly recommend Coffs Harbor, by the way.

Some relevant quotes:

• In "A Pirate Looks At Forty" Jimmy Buffett sings, "I'd rather die while I'm living than live while I'm dead."
• In the fabulous film "Strictly Ballroom" one of the major premises is "A life lived in fear is a life half-lived."
• My dear friend and sister C2 has a sign that sat on her desk for years: "Life is not a dress rehearsal."

A diagnosis is unwelcome news, but it's not an immediate death sentence - most of us have time to pursue more than a few dreams in the meantime. And the horse? Two years ago, we adopted a 21-year old registered Morgan showhorse (retired) who needed a new home. Now, dammit, I don't have a barn yet.

Paperwork, arrrghhh ...

Don't you just love getting mail? Don't you just love getting mail from places with names like "Patient Financial Services" or "Patient Accounts"? I admit to some palpitations every time I pick up the letter opener, wondering "what have they screwed up now?"

Over the past 18 months I've gotten pretty good at keeping things straight. I have a 2" notebook with sections for each entity I deal with (Cleveland Clinic, OSU, and my local clinic), plus a section for the "explanation of benefits" (EOB) statements from my insurance company, and a manila envelope that I've 3-holed to corral all of my receipts. When something arrives from any one of my financial friends, I go over it quickly to see what's pending with insurance, what's been paid and what they say I'll have to pay. Sometimes I get quite a heart-stopping surprise, like the bill for over $17,000 representing numerous espohageal scopes that I had during my month of bleeding episodes last fall, or the $4,300 bill for emergency room services at my local hospital that memorable month. Turns out in both cases the charges were not turned in to the insurance company before I was billed.

Sometimes there are just "duh" moments on somebody's part, where codes are wrong and insurance won't process a claim until those codes are corrected. Sometimes there are genuine goofs, where charges are double-billed or payments aren't noted. It's not easy to compare the bills to the EOBs. Dates of service don't match; reference numbers don't match; descriptions of service don't match. Where I find problems, I use highlighters on the EOBs to flag discrepancies, and write the claim number, check number, payment date and date of the EOB on the bill. This seems to be a good thing for me to do when my meds keep me awake (sick, I know). I have a 3-in-1 printer and so far the copying function has been dedicated to straightening out financial statements. I send out lots of photocopies and so far things have gotten resolved with me going to debtor's prison. On the whole, though, getting the mail isn't nearly so exciting as it was when I was a kid!

I don't know what I would do without insurance - I get myself worked up enough over bills that are screwed up but that will be sorted out eventually. I will not get started on the whole issue of health insurance and medical costs in this country, as the level of inequity is so appalling it makes my blood boil.

Magic numbers

Yesterday was another long day in Columbus, this time for tests and a couple of treatments. A little background here: kidney diseases of all kinds bring different results, and cancer can have many complications and associated problems. In my case, because of the cancer (as a kidney disease) I have high blood calcium levels, and I have anemia.

So I take my knitting and books to Columbus every other Friday. Every two weeks my CBC (Complete Blood Count) is tested for hemoglobin levels. If they're below normal I generally receive an injection of Aranesp to combat the anemia. In addition, every 4 weeks my blood chemistry is tested, and I receive an infusion of Zometa to control the blood calcium level.

General procedure: wait for the blood draw. Take 5 minutes for the blood draw. If it's just for a CBC, wait 45 minutes for the labwork; if for CBC and blood chemistry, add another hour for the chemical analysis to be completed. If CBC shows normal or near-normal hemoglobin levels, raise hands and dance because there will be no Aranesp injection. If for CBC and blood chemistry, get the 15-minute Zometa infusion regardless.

The last two CBCs have shown hemoglobin levels in the normal range - that is, normal for real humans, not just me! So I've gotten to skip two injections. If I get a third pass I might get to discontinue the Aranesp - however, that hasn't happened yet in two years. Boo-hoo. (The darned things sting like mad - probably the most unpleasant injection I've ever had to take).

Anemia? High blood calcium? Are these important - they sound pretty minor. But anemia leads to fatigue, a great enemy. And high blood calcium, if untreated, can lead to irreversible dementia. I think I'll take my medicine.

Dosage do-si-do

Yesterday, 6/21 was the first day of summer here, greeted by Ohio's generally unpredictable and sometimes unpleasant summer weather - hot with thunderstorms, heavy rain, humidity. I have always felt bad in that type of weather and yesterday was no exception.

I spent my day driving to an appointment in Columbus with my OSU oncologist, Dr SC - just a checkup. It's only an hour away but somehow fighting the traffic exhausts me - one reason I moved from Columbus 16 years ago. Dr SC seemed pretty pleased with how I'm doing - I have gained weight (about 15 lb since last year this time), I am as active as I've ever been, my side effects are minimal. We reviewed my meds and I outlined the current dosage schedule for Nexavar.

I've always reacted pretty strongly to medications and in the past, when I could take such things, was prone to split over-the-counter drugs in half. It seems that the same holds true with Nexavar. My oncologist in Cleveland, Dr G, has been working with me to adjust dosages since I went on Nexavar in January. With Nexavar, a full dose put me in the hospital, and I exhibited side effects on a half dose (hand-foot syndrome in particular). We dropped to a quarter dose from March to May - no side effects. We increased the dosage to three-eighths from May to June, with no side effects except that my hair started falling out. Last week I moved back to a half dose - too early to tell what this will do. I do notice that I'm more fatigued and I'm not feeling as good as I did on the lower dose - almost not worthy of notice, but there it is.

When I say "side effects are minimal," why would I complain about them? I'm starting to feel a little nauseous, with a little stomach upset, and my toes are starting to tingle. Big deal? Maybe not, but having had a couple months' respite from years of feeling bad has spoiled me pretty badly. I'll consult with Dr G, grit my teeth and see where we go from here. In the meantime I've been showing tumor shrinkage throughout. That does make it worth it in the long run. At least I'm not in a trial where dosages cannot be adjusted - you meet the criteria, you take the dosage being tested, and you go off when/if you can't take the side effects and/or there is disease progression.

Mea culpa #1

I suspect I will issue many of these over time. Let me say that, in my last post, I do not mean to imply that I have VHL, or that many people do have VHL with any certainty. (I believe there are stats on the National Institutes of Cancer site given below). I fit the profile for VHL in some ways (it's more prevalent amongst those of Scandinavian descent, which I am, and often expresses itself as different cancers in different generations, which is certainly true on both sides of my family). There are many other indicators for VHL that are not present for me, however, so it's a toss-up. The only way to know for certain is to undergo genetic testing.

Also - and importantly - there are no easy diagnostics for the "why do I have RCC". It is a difficult cancer to detect; the most certain signs are sudden spikes in blood pressure and the presence of blood in the urine. But so far no fast-and-sure cause has ever been established. More will follow on this later, I promise.

You can't pick your relatives

No, this won't be a sob-filled post about my evil family - I love my brother and sister, and my parents never beat me (though there were probably times they should have).

My brother's first words, on seeing my shaved head: "You look like Uncle Bernard - or, actually, you look like Grandpa Ray." Yep, just the words a girl wants to hear (though if I had bushy eyebrows I could look like Uncle Floyd too). We know we get external similarities from our ancestors, but what else?

Renal cell carcinoma has several forms - the most common is clear cell, with small percentages of patients having chromosomal or papillary forms. What has become clearer with time and a better understanding of the human genome is that there are genetic predispositions toward RCC. One genetic malformation at 3-p25, for instance, is a marker for von Hippel-Lindau syndrome. VHL expresses itself with various types of cysts, tumors and cancers including RCC.

You might try a little exercise: go back 2 or 3 generations. For those who have died, use your memory to "fill in the blank" about cause of death, and if you're really serious, get death certificates. This is roughly what I found out:

Paternal grandfather: died age 88, complications of diabetes
Paternal grandmother: died age 90, ovarian cancer
Father: died age 66, esophageal cancer
Paternal uncle: died age 84, natural causes

Maternal grandfather: died age 65, pancreatic cancer
Maternal grandmother: died age 42, kidney failure
Mother: died age 77, complications of diabetes
Maternal uncle: died age 71, heart attack
Maternal uncle: died age 75, adrenal cancer
Maternal aunt: died age 41, cerebral hemmorrhage

The further back you search, the less precise the information and the harder it is to find medical records. I really don't know about my maternal grandmother's death, other than that she died when my mother was 10, in 1933. She'd been ill for years, and had gone several times to a sanitarium in southern Indiana, where "taking the waters" was supposed to be good for kidney ailments.

Do yourself a favor - ask questions now, while there are still "grown-ups" around. I wish I had asked more questions when I still had parents and grandparents around.

The prodigals return

Back from the lake, and a successful fishing trip. I caught my share of zebra mussels, gobies, and freshwater drums - a.k.a. "sheepsheads", as well as one 16" walleye and a good-sized catfish. The 16" descriptor is very important - Ohio fishing rules prohibit keeping walleyes below 15"; "good-sized" is all I can say because the catfish was too lively to measure but he was probably 20". I gave said catfish to the charter captain since it managed to give him a pretty solid bite and he expressed interest in returning the favor. Saint H caught 3 walleyes and we returned with fillets for some evening's dinner.

Sheepsheads and catfish are examples of "rough fishing," because they're not considered desirable amongst the purest of fishermen. Actually, they're fun to catch because they fight like the dickens. Sheepsheads are valuable too because they are known to eat zebra mussels, so I'm always glad to seem them returned to the water alive. Let's get those little buggers!

I lasted almost the entire trip of 7-1/2 hours; finally put the pole down and sat in the shade for the last 45 minutes or so. I wasn't sure if I could handle the trip but the challenge and thrill of fishing was more than enough to overcome any conscious feeling. (I truly consider it to be zen-like. Probably the fish don't agree with that assessment.) Even though it was hot I was sensibly dressed in jeans, t-shirt, long-sleeved shirt, bandana and boonie hat, neoprene shoes, and SPF 50 sunscreen. I missed a couple of knuckles when that was applied and they are now bright red and a little rashy-looking; it doesn't hurt or itch so it doesn't bother me. I doubt I will ever see whether I can stand to be in the sun. I used to be able to tan but it's fine if I don't manage it again. No mosquitoes present but I managed to get the bites before we left home, and the usual torture ensues. Thank goodness something is normal!

Cats survived two nights without us and seem happy to see us. I suspect they'll sleep on the bed even though it's quite warm, so that we know they're glad we're back.

Let's go fishing, eh?

This weekend marks my first return in several years to my favorite sport, fishing (that is, the only sport I participate in). There's nothing like drowning worms in Lake Erie, in the company of good friends and fellow zealots. My dad was a great one for fishing (my parents went fishing in - one of the "M" states, Michigan or Minnesota - on their honeymoon -- no idea what my mom thought about that, but they stayed married regardless) but I didn't get the bug until 10 or 12 years ago. Our friends M & D's annual walleye charter is this weekend. I'm finally feeling good enough to go again, and I hope we all catch something besides mosquito bites and sunburn.

The best thing about feeling so good is that I can take advantage of life as it used to be prior to diagnosis. I now feel better than I have for 6 or 7 years. I generally have to pick and choose what I do since I get tired pretty easily, but there's a great satisfaction to doing something I like to do.

I am fortunate to have fairly sedentary interests - reading, knitting, spinning - fishing and hiking are the exceptions and I haven't been up to trying those until recently. I have been knitting since I was 11 (that would be 1963), inspired by my aunt's Christmas present of a knitted Chanel suit (complete with pillbox hat and purse) for my Barbie doll. I still have doll and suit. Somehow Barbie has lost her shoes and underwear over the years, but my, she is stylish on the surface. My first knitting effort was a striped wool sweater in shades of brown and rust, never finished, but I learned on it and have delighted in knitting since.

Anyway, I'll be picking out a small project to take along - probably socks for Saint H (my husband). I could make a thousand pair of socks for him and he'd be happy, even if he never wore them all ... give me a baggie, yarn and needles and I'm good to go ...! That's why I always have multiple socks in progress. Never a dull moment.

Joys of side effects

Ah, side effects. Right now I'm sitting in my living room with a bandana over my shaved head - first my hair turned white, then grey, then started falling out by the handful. The most reasonable thing to do was to get clipped. I only wear a bandana or hat if I'm cold or if I'll be out in the sun. Then there's the blistering around my eyes, and buildup of dead skin cells on my face. And, of course, the sun sensitivity, the fatigue, and the high blood pressure. When I was on the full dose of Nexavar I had a bout with confusion that required hospitalization, and the beginnings of hand-foot syndrome, where nerve impulses are so erratic that the brain can only interpret them as pain and people can suffer permanent damage.

These are mild side effects, compared to some that I've had in the past year of therapies. Last fall I ended up in the hospital 4 times with internal bleeding, and the last episode nearly killed me (requiring a LifeFlight to an ICU unit at OSU hospitals). Nothing like a very expensive ride in a helicopter that one can't enjoy - the windows are pretty small and one tends to be hampered by tubes, needles, and hovering medical attendants. The internal bleeding arises from esophageal varices, related to portal hypertension which is in turn caused by the liver damage from the tumors, and exacerbated by the drugs taken to starve the tumors. Think internal varicose veins and you sort of get the picture. I suspect I'll be a "black box warning" case for Sutent - one of those "In very rare cases individuals have developed [blah blah blah]" statements disclosed in patient information leaflets and the voiceovers on advertisements. Such an honor, I must say. The bleeding was combined with extreme mental confusion and lack of concentration - I believe I have memories of doing a rather good James Brown imitation in a hospital room but I could be mistaken.

Last summer I was fatigued to near immobility and lost distressing amounts of weight, with diarrhea and almost constant stomach upset. Last winter, with the high-dose IL-2, I had freqent problems with blood gas imbalances leading to hospitalization, diarrhea, confusion and loss of appetite. On the whole, though, I tolerated the medication better than most people do - too bad it didn't do anything for me. And for most of the past 18 months I was freezing all the time.

What's amazing about all of this is the resilience of the human body - it takes so little to put all your systems out of whack, but it takes correspondingly as little to get things back in order again. Much of the time spent in hospital has been spent tinkering with medication and dosages and, for now, my body just sort of bounces back. Maybe it helps to be a stubborn Swede. Also amazing, of course, is that the will to live is so great that people willingly go through all of this in hopes that their disease will be conquered. I feel pretty lucky - almost everything I've gone through can be controlled with medication, and only the internal bleeding was really frightening.

We all have to start somewhere.

I've thought off and on, mostly off, for several months about starting a blog. I've been reluctant to do it - who will really want to read this? - but here goes. This blog focuses on living with renal cell carcinoma (RCC), commonly known as kidney cancer, with incursions from other topics. (One cannot live by disease alone, to paraphrase.)

I won't bore you with details but I was diagnosed in September 2000 in an emergency room. I had never heard of RCC before and I am fairly certain that my doctor at the time hadn't either - his recommendation to me, after 2 years of me trying to get answers regarding back pain, fatigue, insomnia, and general malaise, was to seek psychiatric help because it was all in my head. He couldn't have been more wrong. One day after diagnosis I had my left kidney removed. I fired the doctor and found another, had 6 weeks of recovery, returned to my job and life as normal (so I thought). In October 2003 the cancer was back, this time in my liver. More surgery, January 2004, to remove the tumor. More recovery, this time complicated with abscesses and other unpleasantness - 7 months of recovery during which I worked as much as I could, with interludes of illness and hospitalization. Two months after being declared healed, more lesions were found in my liver.

Since then I've retired on disability, and gone through 4 types of treatment - high-dose interleukin-2 (2 cycles, no response); a clinical trial for a monoclonal antibody, M200 (3 months, no response); a clinical trial for Sutent (good response, life-threatening side effects); and, finally, Nexavar, which seems to be working with minimal side effects.

I'm fortunate - I have wonderful doctors in 3 locations, excellent medical benefits, and amazing supportive family and friends. I've found a great support group - don't get me wrong, friends and family will do their best to keep your spirits up but those who share your disease state are the best source of knowledge, empathy and the occasional kick in the butt when needed.