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?

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.

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.

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.

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.

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.

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!