Wednesday, April 30, 2008

What Are the Odds?

One in three Americans will get cancer at some point in their lives. Fortunately, some cancers are completely curable, and others have very good odds for survival. Roughly 14,000 people a year are diagnosed with leukemia, a small percentage when compared to the most prevalent (and highly treatable) form of cancer in the U.S., basal cell carcinoma. Unfortunately, the odds are not so rosy when leukemia is your cancer. Lady Luck has already thrown you in a ditch, and the statistics kick you while you're down.

But statistics paint a general picture, not an individual one. Even the worst baseball team can defeat the best. You can make informed predictions, but hey, you never know. So far, I'm beating the odds. When my doctor pronounced the magic word "remission" after my first chemo treatment, I felt like I'd won the lottery. I was briefly ecstatic, but as with a sugar high I came crashing back to reality. The cancer had been beaten back, probably not completely eliminated. With chemo alone, I had a 50-50 chance of vanquishing leukemia. Hit me. Five hellish months yielded eight months of (mostly) smelling the roses. I was inching my way to a cure, when, boom! Relapse. Lost that one. More odds, more poison, transplant. I've defied more of those pesky odds by surviving the transplant. Will my luck hold?

This is what transplant survivors constantly ask themselves. Has it worked? Will my new immune system destroy any surviving leukemic cells? It's no picnic living with intimations of mortality every loving minute of every loving day. What if I relapse? What then? Fortunately, I'm able to dismiss (more like bury) these thoughts most of the time. I place my bets on life. I takes me chances.

Here's a little Wordsworth to ponder instead of ruminating about statistics. Personally, I'm cultivating the philosophic mind, whereas my husband is for splendor in the grass, especially after all the time he put into lawn care this weekend.

Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.

Monday, April 28, 2008

Idyllic Family Dining

We made the big decision to go out for dinner last night. What's so big about that? For one thing, my doctor advises I limit my exposure to the general public. Our last family dining experience (way back in February) was unappetizing from soup to nuts. In order to have a successful experience, we must wisely choose the restaurant, as one son is a vegetarian and the other worships meat. My husband and I are flexible, that is, we have been beaten down by failed attempts at making everybody happy, and really don't care what we eat as long as things go well. I'm even willing to dine in chain restaurants, although they tend to be crowded, a no-no for Ms. Compromised Immune System.

After carefully weighing all the factors, we opted to try a nearby Olive Garden. Marty and Harry did a reconnaissance mission to ascertain possible safety issues. Mark and I remained in the car awaiting our summons which arrived simultaneously via text message (teen to teen) and phone call (preferred old people method). The immune gods must have been smiling upon us because we were taken to a table tucked into a corner, far from the madding crowd. By all measures, the dinner was a success. The food was adequate and copious; the boys were in chatty upbeat moods (as opposed to sullen and/or critical); no one came within six feet of me. For dessert, we went home and called Mariel. She's looking at only three more weeks in Ecuador before she returns to life in Boring Rhode Island. Fortunately, Mariel is fairly accommodating when it comes to food. This is the girl who used to adore lengua en salsa (tongue) when we lived in Costa Rica, and who has recently had the opportunity to add guinea pig to her culinary resume.

May you only have happy meals.

Saturday, April 26, 2008

Some Back Story

Many of you have known me for a long time. Some of you, however, only know me through this blog. Before Cancer walked into my life, I was living a fairly conventional middle-class middle-aged life in suburban Rhode Island. You know the deal: loving husband, 2.5 smart, adorable kids (okay, 3), 2 dogs, 4-bedroom colonial, minivan. Busy shepherding our children through the local public schools, shivering at soccer and baseball games, overwhelmed by the voracious demands of lawn care, we more or less lived your average American dream with its ordinary cares and joys. We had our health, our marbles, and most of our self esteem. If the world wasn't exactly our oyster, we were at least living where you could cheaply buy good seafood.

That life changed two years ago. I was diagnosed with leukemia, which had somehow found a chink in my otherwise healthy body and was churning out evil clones. It was all pretty surreal, since I didn't feel sick. A swollen finger had prompted me to see my internist who ordered a routine cbc and voila, I had a deadly disease and needed to go directly to jail, do not pass go, do not collect $200. Instead of attending a wedding in Princeton, NJ, I was admitted to Roger Williams Hospital in Providence where a shock and awe chemotherapy campaign awaited. It was a perfectly good waste of a manicure/pedicure.

That's how it started. I'll spare you the grisly details for now, and end with 10 things you may or may not know about me.

1. Surprise! I was an English major.
2. I have 4 younger brothers, none of whom are good HLA matches.
3. Reading = breathing.
4. I have an extra dry Beefeater martini every Friday evening whether I need it or not. Don't be alarmed, I've curtailed this habit for the nonce.
5. When I was 10, I announced plans to become a psychiatrist.
6. I have a dozen or so fine china demi-tasse cups for which I have no use.
7. My father taught me how to handicap race horses when I was a teenager.
8. My first job post college was in the Equitable Life Assurance Building in midtown Manhattan where my grandfather had worked until his retirement, 10 years earlier.
9. I lived in Costa Rica from 1996 to 2002.
10. I hate onions.

Thursday, April 24, 2008

Nothing Gold Can Stay

Okay, sometime's it's not Shakespeare. A headline in today's business section of the Providence Journal prompted my title: Consumers rush to sell gold dental work. In case you've been living in a cave, the price of gold has soared to record highs lately. Still, cashing in your teeth seems to be a questionable tactic since you'll only mine about $40-50 per crown. I remember back in the early 80's when silver spiked and people rushed out to sell their family's heirloom silverware. Perhaps these same people are now going for the gold, whether it's the family jewels or the old chompers. With no silverware and now no teeth, guess they'll be eating a lot of rice. Hmm, maybe not, since rice prices have also hit an all-time high. If you're serious about giving up your eye teeth, keep in mind that your glittery fillings also contain cheaper metals. Still, it might be preferable to selling ancestral gold knick knacks emblazoned with the family escutcheon, or grandma's wedding ring, which possibly have sentimental value. As someone quips in the aforementioned article, "I haven't seen anybody with sentimental teeth." Me neither.

All that glitters is not gold. Shakespeare.

Wednesday, April 23, 2008

Brevity is the Soul of Wit

I'll keep this short.

It's hypothesized that the Bard was born 444 years ago today. Happy birthday to a true language maven. If you're ever asked the origin of a quote, go with Shakespeare or the Bible. Trust me.

Tuesday, April 22, 2008

Slings and Arrows

I wanted to post yesterday, but I was a little down and didn’t want to depress you all. My virtual gang at the LLS discussion forums has been hard hit in the last couple of weeks. It’s not that we don’t expect some of our members will succumb to their disease, but it’s still a shock when they do. One young woman (29) who’d been battling AML for 18 months died last week, leaving behind a husband and 4-year old daughter. She underwent two transplants and tried every experimental drug they could find, but the Beast got her in the end. Another young man (23?) who’s been more or less adopted by the LLS gang because his parents are out to lunch continues to hang by a thread. A 3-year-old has relapsed post transplant and there’s nothing left to be done. One of our regulars, a woman I admire for her pithy writing and incredible strength, has just entered hospice. We are all sad.

Still, there are many amazing stories of hope, courage and success that keep us going. Here I sit seven months post transplant with very few complaints. I ran 2 miles this morning, which was therapeutic mentally and physically. My back has been twinging the last few days and I’ve been having problems with simple things like putting my socks on because I don’t have flexibility in my lower back. Running seems to help loosen these tight muscles. Of course I do the obligatory stretching, too. It’s nice to have a health issue that’s not cancer-related. Bring on the decrepitude.

It’s a gorgeous spring day, and I’m planning on driving to Westerly this afternoon to watch the boys run in their track meet. Talking with the Columbia track coach has sparked some excitement in Mark about going to college. A good time in the 1500 or 800m will fan the flames. Go Mark! Go Harry!

Saturday, April 19, 2008

Is Blogging Bad for Your Health?

Ah, the stress of keeping up with your blog. For serious bloggers, i.e. those who get paid to blog, or those who're trying to build a reputation in the blogosphere, the pressures of regular posting have resulted in serious health issues, including the worst issue of all, an earlier than expected demise. Maybe a blog about your health is an inherently bad idea. Since I receive no renumeration for this (really), and don't feel particularly pressed to write 3 or so entries a week, I think I'm probably okay.

It's supremely gorgeous outside today. The forsythia hedge is breaking like a huge yellow wave on a sea of green. How's that for a nature simile? Right after breakfast I set up barbershop on the back deck and gave my guys haircuts. Yes, I remembered to apply sunscreen. That way, the hair stuck nicely. Lest you think I was grooming the dogs (a reportable offense), I want it to be understood that I was grooming the humans. My husband and sons look very handsome now.

Think I'll unplug and take in some nature. Speaking of nature, here's a riot of it. Mariel took this photo last week in the Galapagos Islands.

Wednesday, April 16, 2008

Passing for Normal

Yesterday we traveled to New Haven, CT to visit Yale, and then on to Wesleyan with son #1. Son #1 suffers from acute middle child syndrome (AMCS), which means we suffer, too. Our son is a classic underachiever who has a great deal of athletic talent. We visited these colleges because coaches had sent him letters lauding his running ability. Yesterday he realized that running into a top college would be nearly impossible given his academic resume. It was not a pleasant day.

That said, it was nice to walk around New Haven and soak in the classic college atmosphere. After sitting through an information session (back of the room, corner), and walking around campus, we met with the cross country/track coach. Mark would be a good candidate for the team, and I have no doubt he could graduate from Yale if he were accepted. It's just doubtful they would consider him given the fact that his grades are mediocre. This put Mark in a sour mood, which poisoned my day.

Still, it was nice to pretend to be a normal person, dragging my 17-year-old slug on the obligatory campus tour. No one knew my secret, unless they noticed how often I used hand sanitizer. I was just an average parent wondering how this whole college thing will play out. Just ordinary parental angst amidst old stone and budding trees. Life goes on.

Monday, April 14, 2008

Looking Death in the Face

My mother died 23 years ago today at age 53. Even though I'd experienced the deaths of assorted relatives and friends' siblings, this was the first time it meant something. Since being diagnosed with leukemia two years ago, I've thought about death a lot, not as some vague distant event, but a sooner-rather-than-later possibility. Contemplating your own end isn't all bleak, especially if you consider some of the grisly stuff you'll avoid: cleaning out the basement; losing your soul at Wal-mart; blaming illegal aliens for the nation's economic woes; fretting about your carbon footprint; whatever. One of the richest dividends death-thoughts pay is clarifying what matters most to you. That you will lose these dear things gives them the sweet prominence they deserve.

Let us roll all our strength, and all
Our sweetness, up into one ball;
tear our pleasures with rough strife
Thorough the iron gates of life.
Thus, though we cannot make our sun
Stand still, yet we will make him run.

--Andrew Marvel, To His Coy Mistress

Sunday, April 13, 2008

Gardening for Transplant Dummies

My brother and his girlfriend tended to my gardens last spring and fall because I could not. They live some 4 hours away though, so this is not a service they can easily or regularly perform. Yesterday I decided it was time to prune some of the bushes in front of my house. First, I had to prepare myself.

The outside world in some ways poses fewer problems to transplantees than the inside world. Human germs are few, and unless you're working in close proximity to a heavy-breathing infected person, you don't have to worry about human-borne viruses and bacteria. But there are other things to worry about, such as the sun. Sun is bad for transplantees because it's a trigger for graft versus host disease which can be nasty and linger for days, months, years. So before I ventured out into the garden, I slathered myself with sunscreen. Fungal spores are also a concern. For this reason, I decided only to prune, not rake or otherwise fulminate flying fungus. I consciously chose not to wear a mask, because well, I didn't want to. Bueno.

There were two other hazards I hadn't given much thought to, lightning and mosquitos. Sure enough, after 20 minutes or so of snipping, a fat black cloud rolled over and sat on me. Ouch. Then the thunder showed up. Then the rain. It was still mostly sunny, so I had the worst of all weather hazards at once. It didn't take long for the mosquitos to show up. That made me think about deer ticks and Lyme disease. Just what I need. I rushed to finish what I'd started, hoping I wasn't kicking up a mushroom cloud.

Later that evening, the second guessing started. My throat felt a little scratchy. Should I have worn a mask? Could it be the pollen? Look out, fearometer rising.

Happily, I feel absolutely fine today. It looks gorgeous outside, and I'm thinking about once again entering the fungal fray. Pick up all those sticks (low to moderate risk). Fire up the chainsaw to cut thick branches (moderate to high risk). Admire the daffodils and hyacinths (ultra low risk and doctor approved). No raking. I promise.

Thursday, April 10, 2008

Down to Five Pills a Day

Yesterday's trip to the clinic in Boston was pleasantly dull. My doctor says my numbers are fantastic. To show you how blase I've become, I didn't even ask for a printout. They go something like this: WBC=5; HCT=36 something; PLT=250. This is uber normal, if there is such a thing. Marty and I soaked up all the positivity and savored it for the rest of the day. My immune system is still babyish (CD4=56 last month; needs to be over 200 before I'm ready for prime time), so I must remain wary. But I am now officially off immune suppressants so hopefully my system will begin to ramp up a bit. My pill regimen is down to 5 a day. Yippee.

My doctor thinks I may have had Fifth Disease a few weeks ago when I had a rash and body aches. Who knows where I picked that up, since it's usually a childhood disease. Lucky me. I'm experiencing a second childhood. I should play more.

That's basically it. Now my challenge is to find ways to safely channel the enormous amount of energy I have. I wish I could bank this stuff. I'll be first in line to open an account at the Sleep and Energy Savings & Loan Association.

Monday, April 7, 2008

A Post About Nothing

This will be mercifully brief. I will avoid veering off into topics that raise my blood pressure: politics, health care, college frenzy, religion, grammar. That last one already got me into trouble today. A headline on the front page of the New York Times improperly used "by" for "buy."

The weekend was uneventful for the most part. I finally started Mark's running scrapbook, which I've put off because crafty things don't interest me. My idea was to put scraps in a book, but when I went to the craft store, I saw that my concept was hopelessly quaint. In an effort to be more decorative, I'm using pinking shears.

Nothing to report on the health front. I feel great; ran this morning; no complaints. We'll see how my blood's doing Wednesday when I go to the clinic and see my doctor. It will be five weeks since my last visit, a lifetime. I'm hoping to stop taking the immune suppressant drug so I can begin field testing my new system. It's seven months today since I had it installed.

Friday, April 4, 2008

To Sleep, Perchance Deeply & for 8 Hours

Deep refreshing sleep has been an elusive dream of mine my entire adult life. I sleep like a cat, ready to open one wide eye at the slightest hint of sound. Unfortunately, I don't devote my entire day to sleep like a cat does, lazily stretching and recurling into a soft snoozing lump. No, sleep for me is a battle, eight uninterrupted hours my holy grail.

The night before last, I woke up at 5:30 am to realize I'd slept through the entire night. I didn't wake up when Harry turned off the hall light (what, you can't hear light-switch clicks?); I remained sleeping when Marty came to bed; dog snoring and dream woofing failed to stir me; even my relentless bladder didn't get a rise out of me. At first, I thought I was only dreaming that I'd slept eight whole hours. But no, it had really happened. I felt immortal.

I had so much energy, everything in my path either wisely stepped aside or was foolishly vanquished. Fortunately for my co-residents, I started to slow down by the time they arrived home. Marty and I did have a spirited conversation about the Governor's fear-mongering edict cracking down on illegal immigrants. I even managed to fire off a letter of support to a Providence Journal editorial writer receiving death threats from residents due to his criticism of the fascist order. Lou Dobbs, I hate you.

Immortality was mine for one day only. Last night, it was back to my usual fitful sleep. Not a bad night, but not perfection. I dream on.

Footnote: Forty years ago on this date, when I was 14, the news of Martin Luther King, Jr.'s death came over the radio while my father and I were driving to a basketball game. I remember it clearly because my father, in a rare display of emotion, teared up. I started crying, too. April cruelty. "I had not thought death had undone so many."

Wednesday, April 2, 2008

The Pretender

Today, no one knew I was a recovering transplant patient. I was not masked and gloved. Children didn't stare at me, nor did their mortified mothers apologize. Fortunately I saw no children, because they scare me. There were no snot-nosed short people in the hair salon. The supermarket was filled with middle-aged women and the elderly. For approximately 90 minutes, I pretended to be normal. I felt like a fraud but hope that with practice, I can gradually feel comfortable in public again.

I'd been cutting my hair myself for months now, and I was looking a little institutionalized. Bravely, I made an appointment at the hair salon I haven't had to visit since last spring. I figured 10 am mid-week would be a slow time, and I was right. Bob had some good ideas on how to grapple with my different hair textures (tight curls in back, straight on the sides, wavy on top), and as he went to work, I felt almost like a regular person.

I left the salon feeling if not looking years younger. I decided to stop at the local food market to pick up a few things so Marty wouldn't have to later. I made the decision not to mask up if it wasn't crowded. I wiped down the handle of the cart and started to cruise the aisles which were mercifully empty. While I was putting my packages in my car, I remembered what it used to be like, dashing into Dave's to grab a few groceries, blissfully unaware of lurking dangers. The hand sanitizer brought me back to reality, but still, I'd done something I haven't done in a long time. I don't plan to make a habit of this because I wouldn't want to deprive Marty of a task he's come to enjoy, especially since it keeps him in free coffee and the occasional pastry crumb.

If I become ill, this will all have been a very bad idea. But at least my hair will look good.