Category Archives: Blogging

A Shift In the Wind

So, it turns out that there was a reason my body started craving more sleep.

I never in a million years thought this would turn into a cancer blog, although I suppose nobody really sees that one coming.

Despite my 5-6 days per week workout habit, my belly started expanding last summer, even though I was losing jeans sizes at the same time. I also noticed some strange changes including a decreased energy level during my workouts and throughout the day, and sheet-soaking night sweats. I vaguely thought it was a combination of some kind of gastrointestinal problem and post-40 aging issues, so I ignored it for a while.

Two x-rays, one CT scan, 16 vials of blood and a bone marrow biopsy later, I learned that I have a mixed myeloproliferative disorder, or post-polycythemia vera myelofibrosis. That combination of large words I had never heard before means that I have a rare blood disease that is trashing my bone marrow. The growing belly turned out to be the result of, as articulated in my medical chart by my big shot doctor, an “amazingly large spleen.” Turns out that the spleen tries to take over the job of manufacturing blood cells when the marrow doesn’t want to anymore, and eats up all the extra cells made as a result of the disease, enlarging in the process. So while I’ve lost weight, I also look a little bit pregnant.

So, here’s the thing. There is no real treatment for this disease, aside from the possibility of bone marrow transplant. But, BMT is risky, so not generally recommended unless it is clear that things are not going well. I am currently being treated with a mild dose of hydroxyurea, a chemo drug that keeps my high blood levels in check enough to alleviate some of the symptoms. This drug has blessedly few side effects… I even get to keep my hair. There is a new drug, one made by Incyte, with the very catchy name INCB018424. This drug has caused significant buzz in the hematology/oncology world in that it seems to offer hope as the first potential treatment for this disease. Both of my doctors feel strongly that this is the right treatment for me, but it is still in clinical trials and not yet available.

I am very fortunate to live only three hours away from one of the finest cancer centers in the world; one that contains a pre-eminent expert on my particular disease. He is the lead researcher on the drug I need, and has offered hope that there may be an appropriate trial available for me this spring.

So, we wait.

I keep telling friends and family that this is the longest learning curve I have ever been on. The issue that challenges me the most is the question of how to explain it all to my kids. That is the main reason it has taken me this long to write about it. I truly believe that the best explanation always involves the truth, no matter how difficult, but this gets more complicated in a situation where even the experts don’t really know how this will go for me. I think that kids can tell when their parents are protecting them, and that their fears stemming from that silence will always be worse than the truth. I want them to understand what’s happening, but also don’t want to scare them needlessly. Sam keeps asking me to tell him that I’m “at a low risk for dying.” I believe that I am, based on my age, my history as a medical outlier (if there’s a category that involves 5% of all patients, I’m usually in it, a bizarre fact that is oddly common in my family.) However, I also need to stare realistically into the face of odds that I don’t like very much. I think that’s an important part of conquering this sucker.

For now, I’ll get my blood counts checked monthly with my local hematologist/oncologist, travel a few hours quarterly to see Dr. Big Shot, get out and listen to live music as frequently as possible, celebrate our kids’ successes and appreciate amazing support from friends and family that stuns me in its scope and seems to grow daily. I wish my kids would fight a little less and clean their rooms a little more, but in a way, it’s comforting that life goes on as usual.

The yellow bracelet on my left wrist inspires me to literally Livestrong, and I am determined to continue that throughout all of this. As Lance’s foundation manifesto says, “Unity is strength, knowledge is power and attitude is everything.”

And now, I’m off to fetch socks for Sam, conditioner for Abby and a library book for Hannah. Our regularly scheduled life continues.

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Time to Wake Up

It is odd that only today I realized the irony of my blog’s name, “Why Would I Sleep?” given the fact that I essentially stopped writing when I started sleeping.

I suppose that’s fairly obvious, but it honestly never occurred to me.

While I am proud of the fact that I have had quite a few birthdays (44, *creak*) I fight the aging process with everything I have. I exercise obsessively and eat whole and healthy foods. (Full disclosure: I also love Mexican food, chocolate and the occasional margarita, but those things are allowable for both mental health reasons and overall deliciousness.)

When I chose the title for my blog way back in 2006, it was easy, because virtually all of my writing occurred after 10PM and often crept into the wee hours of the morning. Oh sure, I was chronically exhausted, but at the same time, those quiet, creative hours fed my soul in a way that made it not only worthwhile to trade sleep for computer time, but necessary.

Fast forward to Summer, 2008… otherwise known as “The Big 2,002 Mile Move.”

We sold our house. We lived in a hotel for two months. With three children and two cats. We moved, unpacked and collapsed. Totally worth the effort, but man, were we tired. We’re all deliriously happy here, but I’m STILL tired. Somewhere in there, my status as a person in her 40’s caught up with my late night habit and my desire to sleep eclipsed my desire to write.

But wait, that’s not quite right. The desire to write has never left me, and damn, do I miss it. But the time and energy seem to have slipped from my grasp.

Thank you, friends, for reminding me that life is too short not to follow your passions. For reminding me that, while there is never enough time, the ability to get through all the crap — the chores, the paperwork, the errands and most importantly, my capacity to be an effective parent to my children, are of massively higher quality when I’m pursuing the things that I do well. Thank you for reminding me why I love to write, and why it is important.

You know who you are.

And now, back to laundry.

For now.

This Is Ridiculous

Good lord, I haven’t posted anything since August? I need to get back in this habit. I miss it. But how to catch up?

My life over the past year and a half, Cliff’s Notes style: I found a new town and fell in love with it. Built a house. Moved my family. Now have impossibly large children, aged 14, 12 and 10. Cut off 10 inches of hair. Had surgery and recovered from it, but now have to wear a %$#@ing medic alert bracelet for the rest of my days. Gained ten pounds, lost ten pounds. Got the kids acclimated to a new town, new climate and new schools. Adopted a dog. Recovered from a nasty case of pneumonia a month ago. Helped my youngest brother raise a whole lot of money for Parkinson’s Research in our dad’s honor, and then watched said brother run the New York Marathon. Became an aunt for the seventh time (welcome to the world, Finnley Hawk!) Haven’t met him yet. Need to fix that. In 18 months, have consumed approximately 1,628 cups of coffee.

So here we are. Moving forward…

Do We Dare to Be… Hopeful?

I am a little bit obsessed with all the updates about last Thursday’s so called “Miracle on the Hudson.” I realize I’m not alone in this. A major news story free of doom and gloom? (Unless, of course, you happen to be a goose.) A gloriously happy ending? Given the current state of the world, the sheer optimism of this story is as shocking as it is uplifting.

Everything about the conclusion of US Air Flight 1549 is incredible. Stranger than fiction.

The plane didn’t break apart. It didn’t flip over in the water. Nothing exploded. Nobody died on impact. The plane didn’t sink. Nobody drowned.

If a plane crash-landed in a movie like this flight actually did land on Thursday (see the video in the newslink above) the audience would bust out laughing at its implausibility.

It just doesn’t happen that way.

We see the harrowing crash scenes in movies like Castaway, or recall the circumstances of other plane crashes in years past, and know that those tragic outcomes, fact or fiction, are the likely result of any “water landing.” We chuckle uncomfortably at the concept of life vests on airplanes, knowing full well that in an accident, they would likely serve only to make the corpses easier to find.

And yet, somehow, thanks to a pilot’s incredible skill and calm demeanor, along with a healthy dose of good luck, they are all alive.

As if that’s not enough, the backdrop for this story is New York City, a place unfortunately distinctive as the setting for too many scenes of horror in recent years. The photos of living, and incredibly, mostly unharmed passengers lined up along the wings of the downed airbus — miserably cold, but very much alive — stand in stark contrast to the terrible images of the dust and death of 2001.

For months, we have been bombarded almost daily with images of stunned traders on the floor of the New York Stock Exchange. Grim, symbolic images of our troubled times, framed entirely by the Manhattan skyline. Spitting distance from Flight 1549’s watery landing strip.

The plane was pulled out of the Hudson River last night. The underbelly was described as “shredded,” and investigators are still trying to find a sunken engine. One wing appears charred. But one of the flight attendants described the ditch as little more than a “hard landing.” A big, scary thump with no bounce, and then a slow deceleration.

For once the story is a good one. And it’s hard to miss the symbolism.

I wonder. And I’m afraid to say it out loud. Could this be a turning point?

It goes without saying that it is far too simple. All economic forecasts, decimated advertising budgets, and jobless Circuit City employees indicate otherwise. But the blurry pictures of wing-surfing survivors are etched in my brain as the first joyous news image in many months.

While there is much to be fixed, one can only hope for the best, and rejoice in the positives as they reveal themselves. The realist in me knows better than to think that we’re on the mend just yet, but my optimistic heart really wants to believe.

Uh Oh

My laptop has had electrical “issues” for months. I always have to nudge the plug back and forth, and sometimes I even prop the plug up in one direction or another just to convince the danged thing to charge. But still, I’ve managed to get it to work, most days.

But today, my poor, stubborn computer started smoking, and I don’t think Nicorette’s gonna go do us much good. Burning-wire-scented, little curls of smoke, right at the spot where the plug goes in.

Not good.

UPDATE AS OF DECEMBER 2: Yep, it died. Replacement computer is on the way, but seems to have been sent via Pony Express. Trying to stay strong. *sniff*

Huh

Sometimes strange things happen on my stats page, but I can usually figure out why. But I sit here completely stumped as to what seismic event caused this here blog to receive 456 hits yesterday.

No clue.

Anyone? Bueller?

36

That’s how many unpublished drafts I have lurking in my files.

And after a careful review, I have determined that exactly (wait for it) — none of them — have qualities of publishablenessicosity, as they pertain to past events, times, and places.

Hmph!!

Gotta get blogging again. I may drag a few oldies out from my archives along the way, so please bear with me. Just trying to restart the engine, and it may take a little tinkering some medication a few whacks on the head to get me restarted.