Thursday, January 31, 2008

What, Me Worry?

I've been too carefree lately. Time for a little anxiety. Here's a list of things I'm worried about:

1) I feel too good--does that mean relapse?
2) Is the crust on my lower lip graft v. host, and if it is, does that mean I won't relapse?
3) If we survive Mark's college application process, how will we finance college?
4) Is Mariel ready for her semester in Ecuador? Am I? Ah, the perils of 3rd world travel/life. I know them intimately.
5) What's wrong with Turbo's kidneys and can we fix them?
6) When will my immune system reconstitute so I can come out of hiding? Will it ever be normal, or will I be chronically under-immune?
7) What if the sweater I've been knitting for an eternity looks like hell when I finally finish it?
8) What if I have nothing to report in this blog and start writing questionable posts like this one?
9) If the Pats win the Superbowl, will their victory parade impede us during our trip to Boston Tuesday? Last place I want to be is behind a rolling duck amidst inebriated Bostonians.
10) If I publish this post will you worry about my worry?

I'll try not to worry my warts. Oh, I don't have warts. Are they viral or fungal?

Monday, January 28, 2008

Lip Service

Some of you may remember me referring to a common complication of transplant, graft versus host disease (gvhd for short). As a cord blood recipient, I'm less likely to develop this problem because the cells I received were brand spanking new and therefore brought only the rudimentary makings of an immune system along with them. The theory is, as the new system grows and starts attacking perceived enemies, it will recognize my organs as allies of sorts. Think of it as a mutual non-aggression pact.

I've been very fortunate that so far, my body has resembled North America more than say the Middle East. But I'm wondering if I don't have just a touch of skin gvh. I realize it's winter and everyone's prone to dry itchy skin, but my skin seems to itch from the inside. It's no big deal, and I wouldn't even mention it except a blogger friend and fellow transplantee has been writing about her skin issues and mentioned a little problem with her lip. Which got me to thinking about how I've had a severely chapped lower lip for months now. I've never been prone to this winter malady, not even in my skiing days. Also, instead of flaky crackness, my lip has more more of a scaly reptilian aspect. Could it be a sign of gvh? Gasp. I'll watch for molting.

I have my next clinic appointment on Mardi Gras, February 5th, and I plan to mention my lip issues to my doctor who will probably look at me like I'm crazy. It seems so minor and ridiculous, but you never know. I might have to go on lip steroids. I'm lippy enough as it is.

Saturday, January 26, 2008

The End of a Log

I've reached a decision. I'm no longer taking my temperature twice a day or weighing myself each morning and then recording it. This was something I'd done religiously since my discharge, but I lost interest in it a few weeks ago. I no longer saw the point of keeping this log when every day I weighed the same (plus or minus 2 pounds), and every day my temperature was somewhere around 97.5 am / 97.8 pm. After filling endless pages with these numbers, I decided to live without it. If I start seriously losing weight, my pants will feel loose. If I start to feel ill, I'll take my temperature tout suite. Knowing my temperature at 6 am and 9 pm isn't going to help me with a fever that crops up at noon. I'd planned to keep this medical rebellion to myself, but Marty asked me one morning if I'd taken my temperature, and I wasn't going to lie.

For all I know, I may have been able to curtail this slavish record keeping long ago. Nobody told me to stop or continue; I never asked. I hereby record this little heresy though, just in case it reveals reckless endangerment down the road. I'm guilty as charged and this is the evidence to prove it.

Thursday, January 24, 2008

No Whine for Me

Maybe just a little whining. My birthday celebration on the "outside" went off without a hitch. I felt somewhat like a psychiatric patient on a day pass, but I did get a sharp knife with which to cut my meat, so I guess a more apt simile is like a soldier on furlough. Ironically, instead of feeling normal and free, I felt mostly conspicuous. Maybe because we sat all alone in a private dining room. Maybe because I had to grill the waiter about the water source. Maybe because Marty looked at the shaved parmesan cheese on the grilled asparagus and thought I shouldn't eat it. Maybe because I had that little bottle of Purell eyeing my every move. Clearly, I am a Special Needs restaurant patron. I know Marty's watching me out of the corner of his eye to see if I develop adverse symptoms which might be traced to my big night out.

And I really shouldn't underestimate the public minefield, or the havoc that might be wreaked from ingesting a small amount of imported Italian cheese. I was reminded of that yesterday when I learned of the deaths of two transplant patients I "know" on the LLS discussion boards. It's a jungle out there, and I should never be complacent.

Wednesday, January 23, 2008

They Say It's Your Birthday

What made me go out for a run this morning at 7:30 when the temperature flirted with thirty? The flip answer is: because I could. The real reason I braved black ice was that today marks the completion of 54 years of living. There were moments over the past 22 months when I didn't think I'd survive to celebrate this day, let alone run two miles. My mother died of cancer when she was 53, and ever since I received my leukemia diagnosis at 52, it's been impossible for me not to dwell on her untimely death. Those were footsteps I did not want to follow.

What twisted plot line had led to this uncanny turn of events, threatening to write me out of the script? Any conspiracy theories out there to explain Death by Cancer for mother and child at precisely the same age? Could it be a long-forgotten family curse? Maybe a few crazy gods having a little sadistic fun? Totally bad karma? A genetically programmed time bomb? Coincidence??????

I'm here. I feel good. I hope I don't catch the cold Harry developed yesterday 5 minutes after I gave him a haircut. I already received the best present there is (that would be waking up this morning), and the next best will happen later tonight when I make my restaurant debut. Yes, I'm going out with my family to dine in a public place for the first time in 5 months. Marty, my personal body guard, already made a site visit to address safety issues and concerns. Could I want more than this? Maybe a glass of wine.

Sunday, January 20, 2008

Quiet Sunday Morning

I really want to go down the driveway and get the Sunday Times but it's freezing out there. I've been sitting here with my laptop drinking coffee and looking out at the icy cube that is my backyard. It's highly doubtful that I'll be going out today.

There's not much to report since I feel more or less completely normal. Considering I am 136 days post transplant, that's good news. I'm sleeping better, running further, writing more.

This is what I look forward to today: more deliciously intense Costa Rican coffee; reading the newspaper; eating freshly-imported New York City bagels hand-carried by friends who came up to visit us yesterday; sending Marty off to do the weekly food shopping; maybe a nap. A delightfully boring day is what I want and what I'll probably get. Cheers.

Thursday, January 17, 2008

Armchair Traveling

Considering that at one time my husband and I discussed moving (for employment reasons) to the Dominican Republic, I know next to nada about the country. I just finished reading a book titled The Brief Wondrous Life of Oscar Wao by Junot Díaz, and realized I’d read two other novels about this same period in DR history. In fact, Díaz refers to these books in his work: The Feast of the Goat by Mario Vargas Llosa and In the Time of the Butterflies by Julia Alvarez. All three books explore aspects of the atrocities committed during the mid- 20th century Trujillo era, some 30 years of brutality the U.S. (oops!) enabled and then ignored because it suited us politically and economically. What, we supported a dictator? No me dígas! You don't learn that in high school history class. Hey, give me some credit for knowing my geography: the Dominican Republic shares an island with Haiti, though I never seem to remember which side's which.

Anyhoo, if you want to “travel” to this beautiful country that’s in our own backyard (one island over from a place called Cuba that US citizens are only allowed to visit in an armchair), Díaz’s book takes us to the present-day DR, too. It seems like a truly beautiful country functioning on the edge of chaos, still reeling from its long history of being used and abused by the colonial powers that be (or were). I warn you though, the author piles on tragic events like a latter-day Sophocles, and despite a heavy dose of humor, reading this book may leave you depressed and puzzled, perhaps even embarrassed that you, like me, know so little about 20th century American (the continent) history.

Since flying in a commercial airplane isn’t something I’ll be doing any time soon (unless I get a gas mask), armchair traveling is the only way I’ll be going anywhere. My next journey is to the American West on a book called The Shadow Catcher by Marianne Wiggins. Hasta la vista!

Tuesday, January 15, 2008

Psychic Load

When I go for bloodwork, one thing that's measured is the viral load. This test assesses the activity of latent viruses lurking in my body. So far, these bad boys have been behaving themselves, which is part of the reason I've been feeling so good. But they're there, ready to wreak havoc if given half a chance.

Which definitely affects my psychic load, a measure of how much mental stess/pain a person can handle. As you know from reading my transplant chronicles, there's fear and anxiety to spare when staring down a disease that odds are will kill you. My faithful readers have perhaps suffered psychic stress from following my story, which is one of the reasons I've sprinkled air light and daffodils over many posts and made a stab at humor. The last thing I want is for you to flee in despair.

Just as I've added to your psychic load, the misfortunes and suffering of others have ramped mine up to new levels. How can an observer process and understand these tragic pile-ups? Right now, I'm worried about a number of people burdened with daunting physical and emotional challenges. Some of these people are fellow members of an on-line community of blood cancer warriors. One woman, undergoing a stem cell transplant, learned that her only brother died in a hit-and-run accident. She can't even go to his funeral. Her mother just lost one child, and the other's in the battle of her life. Two weeks ago, I learned that a dear friend, one of my caretakers post-transplant, was in a horseback riding accident that left her partially paralyzed. On the same day, a friend told me about an acquaintance of mine who was just diagnosed with colon cancer. It probably doesn't help that I'm reading a book in which tragedy after tragedy unfolds. Some days, it seems Hemingway had it right: we are all bitched from the start.

The weight is heavy right now, the negative energy replicating at viral speed. Is there meaning in it? It's nice to think that what doesn't kill you makes you stronger, that good can come from bad, that there's a reason behind suffering we just can't fathom, blah blah blah. You'll never read in of any of my posts that there's a plus side to having leukemia. Any "good" that comes of this bad comes at great cost.

I do have hope that there are better, less psychically caustic days ahead for us all.

Monday, January 14, 2008

The Snowy Day

A frosty Frostian scene unfolds beyond the bay window in my kitchen. My woods are filling up, lovely, dark and deep. All is quiet, as three teenagers dream about snow days, unaware their dreams have come true. May as well enjoy the peace while I can, because once they come out of hibernation, there will be eggs to fry, among other things. I figure I have 3 hours.

Snow and I are simpatico. When it first falls it makes everything so clean, and who can deny that I'm the Queen of Clean. The contrast between light and dark gives my backyard definition it didn't have yesterday, when it was a blur of brown. This precise pristine scene won't last long. Not long enough. Huge sigh.

Snow mesmerizes, makes you stop, stare. Makes you want to drink hot cocoa and read poetry by the fire.

Snow, take me prisoner.

Saturday, January 12, 2008

Home Alone and Palely Loitering

About an hour ago, my family walked out the door and left me home all by myself. I feel like the teenager whose parents decide he/she is ready to be at home solo. They're going on an overnight to Pennsylvania to attend a party at my niece's house. I do have the dogs with me, but as they've never been trained to handle anything more than sit/stay/et cetera, they're not going to be very useful to me in an emergency. Not that I'm planning on having one. No, I'm planning on enjoying this sun-filled warmish day. I'll go running after I write this. Reading, writing, researching, knitting are all on my agenda. I can eat whatever I want, whenever I want to. Don't worry, I'm not planning to do too many illegal activities. Mark will be back from his track meet late tonight, so I'll have someone to argue with tomorrow.

Marty vacuumed and washed the tile floor last night, relieving some of his guilt about leaving me home. He claims he did it because the floor looked disgusting, which it did. I'd already planned on donning an industrial strength mask today and doing it myself. Maybe he knew that.

There's something very positive in all this. A month ago, Marty wouldn't have gone away for the weekend, leaving me home. Now, he feels he can do so and that I'll be all right. And I will be all right. That's an accomplishment.

Thursday, January 10, 2008

My Poetry to Protect Me

Thought I'd shake it up a bit and share a poem with you. I wrote this following my leukemia diagnosis, before my relapse and subsequent transplant.

Last March

This is the hour of lead remembered if outlived.
--Emily Dickinson

The doctor bears the news
to the unwitting patient
who hears sound absent meaning.

Thought drains away like blood
as she stares out the window, inert.
A gray-caped sky forces itself
upon the struggling landscape.

Please, no.

The yard is swathed in decay.
Scraggy oaks plead for reprieve,
for any sign of life amid the sepia.
Stray leaves curl their fingers
around clumps of limp grass.
Even the birds are bereft,
without song.

A voice thanks the poor man;
the phone falls away.
Tick … tick … tick …
the hour of lead begins.

Wednesday, January 9, 2008

What I Learned Today

The first thing I learned today is that Jimmy Page of Led Zeppelin is 64. Seems every radio station in the Providence/Boston area is paying him homage by playing the band's tunes. The next thing I discovered is that I can drive myself to Boston and back and not get in a wreck. I haven't been on a highway since August, and wasn't sure if my baby blood was up to the task. I heard many many Zeppelin songs during my drive to Dana-Farber. The CD player in my car had one lone CD in it, the musical Camelot. Shows you how much I drive. Darling Marty must have loaded that. I still hate musicals.

I learned at the clinic today that my blood counts are completely in the normal range for the very first time since the last time I drove on a highway. I saw my doctor and he said I'm fine and I said I felt fine so that was that. He told me to cut back on one of my immune suppressant drugs (prograf) and to be on the look-out for any signs of graft v. host issues. Curious about how my spanking new immune system is doing, I asked what my CD4 count was. A healthy person's count is 500-1500 t-cells per cubic millimeter of blood. Last time mine was checked, over a month ago, it was 4. Geez Louise. Fragile as a Ming vase, I must remain a hermit.

Yesterday, I learned something very sad. One of our dogs that we left behind in Costa Rica had to be put to sleep last Friday. Her name was Allie and she was a bouvier de flandres we'd rescued when she was 2 years old. She was a full sister to our dog Asta, and a half sibling to our Turbo. Our friends in Costa Rica adopted her and continued giving her the good life, complete with complementary mangoes. Here's to you Allie, a good loving dog who no longer has to be terrified during thunderstorms.

Allie, November 1997 - January 2008

Monday, January 7, 2008

No Time for Blogging

In a "true" blog, you post every day, at least once and sometimes more often. There's an article in today's New York Times about how the blogging life may be bad for your health. Ah, the pressure to post one's thoughts with great frequency. Fortunately, the writer of The Plog has resisted this urge and decided to post only when she feels like it. She has enough health-related issues with which to contend, and does not need the stress of daily blogmanship.

Somehow, the morning has disappeared and the afternoon is staring me in the face. How did this happen? Marty guilted me into baking a banana bread with the rotting bananas I'd intended to toss. It was such a Costa Rica moment. I was forced to read sections of the Sunday Times because I was soooo busy yesterday visiting friends in person and via telephone. I read, printed and emailed some articles pertaining to my grant-writing activities. I listened to a poem by Robert Frost called Desert Places on NPR, was compelled to google it and read said poem and several others. Then I remembered the meatballs. Isn't that the dryer beeping? Checked the LLS discussion board to find a post by the Long Lost Leah, successfully transplanted on Saturday. Yeah! Think about blogging but realize Time's winged chariot grows near. The meatballs aren't going to make themselves. Thank god the phone hasn't rung. So who's writing this post?

Today, there's no time for blogging. That's a good thing.

Friday, January 4, 2008

16 Weeks, Make That 17 Post Transplant

Too bad I only learned my multiplication tables through 10. Okay, 11. Every Friday is another week post transplant and if I want to convert that to days (the usual method of talking about it), I actually have to do the math. To top it all off, I thought today was 16 weeks post and it's actually 17. I guess it's a good sign that I don't wake up every day and think, I Made it to Day Whatever. Today is, ka-ching, Day +119.

So how do I feel on this frigid January day? Somewhat transplanted. In other words, I feel like I've had foreign blood cells planted into my bones. Or something. It's not a bad feeling, just an odd one. I feel a little cottony and a bit tired. For all I know, this is how you're supposed to feel when you're pushing 54. Pushing takes energy.

Thursday, January 3, 2008

Flame-Retardant Garments for the Politically Active

A friend of mine, commenting on my return to numerous pre-transplant activities, wanted to know when I would resume ranting about politics. The truth is, I get no kick from the subject, and most politicians make me cringe. That's because when I'm listening to a politician speak (a mercifully rare event), a little voice often starts chanting: liar liar pants on fire. But on this day of the Iowa Caucuses, it seems fitting to allow myself a moment of brief bloviation. Would that politicians be so courteous to their audiences.

Warning: You may be offended by the next paragraph. Immediately skip to the final paragraph if this occurs.

America, you re-elected George Bush. Democrats, you rubber-stamped some of his most questionable actions. It's not easy to swim against the tide, to say no to a mob of raving war-mongerers. It's difficult to say nay when the vast majority say yea, to have the courage to follow your moral compass, political expediency be damned. But when you approve something that turns out to be a disaster, not to mention unpopular, endless spinning is necessary to explain your misguided vote. Expensive designer pantsuits go up in flames. Experience? The most experienced politicians are quite adept at covering their hind quarters. Perhaps they should look into flame-retardant fabric.

Enough. I don't want to tax my immune system. Note to myself: avoid crowds, salad bars, politics.

Tuesday, January 1, 2008