Birthday Redux

What, again?? But I feel like a second celebration is justified.

Six years ago yesterday morning I went to the emergency room, suffering from an unknown malady. Six years ago yesterday afternoon, I underwent hours of tests to confirm the preliminary diagnosis of renal cell carcinoma, made in the ER. Six years ago today I had my left kidney removed.

Strange as it sounds, I consider myself lucky. I realize every day how precious my friends and family are to me. Six years ago today I had my life handed to me on a platter. I don't intend to give it back anytime soon.

Flying High

Sunday was a day full of unexpected pleasure. Saint H had expressed interest in seeing the WWII-era B-17 Liberty Belle that was visiting at the Delaware, OH Municipal Airport. So, we went down in the morning after breakfast. We took the walkthrough tour - I know I'm stiff and out-of-shape generally, but I can't imagine moving through the plane's interior in full gear. There are 14 B-17s in flyable condition now, and many are stationary exhibits at museums - only 2 or 3 make the circuits these days. The Liberty Belle is on the road almost every weekend.

We watched her take off for the 12:45 flight, then went off for lunch. After much discussion, we went back to the airport and booked seats on the 3:00 flight. It was fabulous! They leave the radio room roof open during flight when it's nice and, if you're tall enough (I'm not) you can stick your head outside the plane at 150 mph, 1200 ft above ground. We had free range through the plane during the flight - view from the nose is incredible. We probably spent money we shouldn't have, but the chance may never be there again. It's a living monument to the veterans who took so many risks during the war!

I'm feeling the same type of euphoria right now - we got back from Cleveland earlier today. Scans show no growth and stable disease - so I've been stable since June on a half-dose of Nexavar. Tomorrow I up the dosage from 400mg daily to 600mg daily, monitoring all the usual suspects for signs of side effects. If anything changes, I go back to the half-dose. Stable is good.

The Reading Nook

I have always kept books in the bathroom. Now I have a set of shelves in the bathroom; I make numerous trips there daily due to my medications, and figure I might as well use my time wisely :^)

So, aside from the Harry Potter books and some favorite mysteries by Dorothy Sayers and Josephine Tey, what's in the bathroom with me? Often there's a stack of library books. And, since we just moved all of our "spare" books from the old house, I'm finding oldies to re-read. Right now, it's the Richmond Lattimore translation of Homer's Odyssey.

There's an added benefit to bathroom reading - I can read poetry aloud to myself, stumble on (or over) pronunciations, be overly dramatic and ridiculous, and nobody else can hear me. The cats are the exception, of course, but I doubt they'd tell on me. I'm enjoying the chance to rediscover my collection. What better thing to do when I'm a captive audience of one, so to speak?

Cool and decidedly fall-like here this weekend; the sweaters are out again. Early this morning the sky was crystal clear and the stars were so bright I could see the brightest ones without my glasses. I enjoyed being warm for a while but I am willing to trade that for fall - one can always put on more layers, after all.

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.

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?

Ceremony of the Keys

It's been a long week spent fruitfully at the old house in town, sorting, boxing, pitching and moving. Friends Dick & Mary gave 3 days of hard labor to get this done; Friday we all cleaned like mad, and at 5:00 we turned over the keys to the new owners. I stood in the yard and bawled - not that I'm unhappy to be done, or unhappy that this nice couple will be getting their first home, but I did so love that house! However, I love this one too. Sentimental old fool, that's me. At least the memories are good ones.

Tomorrow is my 54th birthday. This time last year I felt so terrible that I was quietly convinced I wouldn't live to see this birthday. This time last year I looked so terrible that I suspect others thought so too.

Last year, I was too weak to push open the wooden restroom door at the local Applebee's; I would have to wait for someone to go in or come out. This year, not a problem. Last year when we moved, I had to sit in a chair and direct others. This year, while I couldn't tote and carry all day, I did my share. I can run up a flight of stairs now without stopping or wheezing. I can be busy all day without needing a nap. I can, in short, carry on a normal life, with only my normal amount of laziness intruding to slow me down.

Even if I don't make it to my 55th birthday, I look on the last 6 months of normalcy as the most wonderful gift I could ask for. Blind me with science any day, if this is the result!

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.

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.