drip drip drip

Don't you hate it when you get up in the morning and the first thing you hear as you stumble to the coffee pot is drip drip drip? Not from the coffee pot, but somewhere over the couch? We haven't had rain here in over a week, but it's raining from one of the recessed lights in my family room. This house wins the award for leakiest ever, and it's the youngest by far. Our 1857 Brooklyn townhouse had far fewer moisture issues.

While I wait to call the plumber, who came last week and "fixed" the minor drip, now major, I just want to kvetch about how poorly I slept last night. I should have stayed up to watch the endless all-star game; it would have been a better use of my time. I've been a poor sleeper since adolescence. A good night's sleep is one of the few things I truly yearn for, although I'm dangerous when I get one. Honestly, if you can give me a suggestion for how to catch a few more z's that I've yet to consider, and it proves successful, I will send you a prize.

Here's a book recommendation: Netherland by Joseph O'Neill. I love it when a book has the perfect title. Now it's on to Breath by Tim Winton. I owe it to my Aussie blood to keep up with the latest literature.

Putting on the Miles & the Pounds

When I saw my transplant doctor in June, he asked me if I was running every day. I sheepishly told him, no, every other day. I projected my disappointment onto him: what, I gave this woman a transplant and she's not running every day. What a waste of baby boy blood.

Chastened, I started running every day, or at least 6 times a week. I usually do 2 miles, but throw in a 3 or 4 miler now and then. In theory, I'm "training" for the CVS Providence Downtown 5k in September. I ran this race for the first time in 2006, 6 months after I was first diagnosed with leukemia. I remember tearing up at the starting line. Last September, I didn't run the race because I was trapped in a bizarre science experiment. Now that I've escaped, I'm determined to run this September, just after I celebrate my first birthday.

A curious thing has been happening. For the first time since sixth grade, I'm actually putting on weight. I am one of those lucky people who has been able to ignore what I eat and maintain my weight. You can chalk it up to my high metabolism, or to my fear of being fat. Either way, I've never given much thought to calories or portions or carbs or trans fats.

It has come to my attention however, that I've gained almost 10 pounds and I can't figure out why or how. On one hand, this is a good thing. In Leukemia Land, it's better to be a bit hefty. Also, if I'm gaining weight, I take it as a sign of health, not illness. The problem is, my clothes are starting to feel and look tight, and I appear to be 4-5 months pregnant when not sucking in my gut. Help! Could it be muscle weight? I've upped my hand weights to 5 pounders in the last month. Is it the dreaded menopausal middle creeping in? I'm determined to battle this bulge with every fiber of my being. I do not want to be a pear. I hate pears. Someday I'll tell you why.

So I'm conflicted. Lose 5 pounds or hang on to them for good luck? Think I'll eat breakfast. Not too much.

Rounds

I get up at 6 am weekdays. I put on the coffee (only Costa Rican coffee passes through my lips), make lunch for whomever will be out working or attending school, and then I switch on my computer. Fueled by a cup of dark nirvana, I check my email accounts, visit the New York Times, a weather site, blogs I follow and then do my rounds at the Leukemia & Lymphoma Discussions Boards. I read selected new posts; I respond to some of them. This is my virtual community, a community I wish I weren't a member of, but happy to have stumbled upon during the waning days of my remission from AML.

There are questions to answer (and sometimes ask), encouragement to bestow, condolences to offer. There's no tip-toeing through explosive issues; we cut right to the chase and blatantly discuss the day-to-day issues that dog someone with blood cancer. It's not pretty and it's not fun, but it's an incredible group of people from all over the planet who gather to share ideas, discuss non-cancer topics, even tell jokes. Laughing out loud is a good antidote to crying into your computer keyboard.

Sometimes I'm afraid of what I might find, and with good reason. The odds are against us, and there has been so much suffering and death. But still I make my rounds, checking in on my virtual friends, offering what I can. I've questioned whether or not this is healthy for me. After all, I want to put leukemia in a lead-lined container and drop it into the ocean, not dwell on it. But then I think, maybe I can help someone. Maybe I can give someone about to undergo an umbilical cord transplant my perspective on the experience. I can talk about anti-nausea strategies, baldness, how to minimize the pain of a bone marrow biopsy. I can serve up some hope, and I can take away a portion for myself. I continue my rounds.

But though I have wept and fasted, wept and prayed,
Though I have seen my head (grown slightly bald)
brought in upon a platter,
I am no prophet--and here's no great matter;
I have seen the moment of my greatness flicker,
And I have seen the eternal Footman hold my coat
and snicker,
And in short I was afraid.
The Love Song of J. Alfred Prufrock, T.S. Eliot

10 Months, Still Kickin

Boston was like a giant baked bean yesterday, hot and sticky. Fortunately, we had an early clinic appointment and were back home having lunch by 1:00 pm. There's nothing much to report, as my blood work continues to be summa cum laude. One bit of "news" is that my doctor eliminated a drug from my regimen, leaving me with just 2 prescriptions per day. That's probably about average for a 54-year old American, and those should be phased out by September. A chimerism test was ordered to see what's up with my cords. The last time we checked, Colorado Boy was dominating Aussie Boy by a 3 to 1 margin. Even my blood is a metaphor for American hegemony.

My immune system has added some new defensive moves, scoring a 247 on the CD4 count. Normal is 500-1500 so I'm still fragile, but you could probably drop me now and I won't shatter. I might get a crack or two. Don't worry, I'm still assiduously avoiding confrontation, especially with snotty toddlers.

A word on uniquity. That's not a word, but I think it sounds better than uniqueness. It would appear that I am the lone cord blood transplantee living in the State of Rhode Island. This came out in a conversation I had the other day with a policy analyst for the RI House of Representatives. We were chatting about the cord blood initiative the RI Blood Center's trying to get off the ground, bouncing around ideas about how to make the case compelling in the eyes of the public and the powers that be. Normally, I'd love to be unique in some way, but I would not have chosen this specialty. It chose me, so I'm going to try to find some use for it.

Shout out to Ann and Chris!

Accepting Things I Cannot Change

Okay, so 26 miles was a bit much. After spending most of Friday inert, and some of Saturday in a minimally functioning mode, I have to admit that the bike ride was over the top no matter how well I think I feel. I should have worked up to it slowly, or done it on a day when the temperature was lower. I should have done it 20 years ago when I was in my 30's. Mea culpa.

I finally put my running shoes back on yesterday after a 2-day hiatus. This morning I also ran a couple of miles, so I think the bike trauma is behind me. Thanks to help from Marty, the windows are now sparkling clean. Mark and Harry finished the demolition of the front garden and we now have a wood pile stacked high out back, our possible heating source for the cold winter ahead. I plan to ruminate a little about the eventual garden we'll put in. I'm thinking about something soothing, a spot that will be a contemplative place, perhaps a zen garden.

I need some time in a zen garden, a time and a place outside myself and my pedestrian concerns. A peaceful refuge where thoughts don't turn to cancer. A place where the angst of guiding children through the Scylla & Charybdis of the teenage wasteland can float up and fly off with the hummingbirds. We've called off our trip to go college sampling because our son thinks we're dumb and only he knows what he wants in terms of college. We're putting him in charge of figuring this out, which hopefully means a coach will actively recruit him, fill out his applications and petition guidance and the college board to file the necessary paperwork. He'll figure it out. He's very smart and knows so much more than we do about this than we do. How did we get so dumb?

I just took a deep cleansing breath, but I'm not there yet.

26 Miles Because I Could

Yesterday, we dusted off my old bike and drove to Providence to ride on the 14.5-mile East Bay bike path. My husband has started actively biking again, so I gamely agreed to accompany him on this scenic ride.

It was sunny and warm; I didn't spare the sunscreen. The route was flat and followed the curve of the Narragansett Bay which separates the large western chunk of Rhode Island from the narrow eastern slice that borders Massachusetts. The last time I've biked any distance was 3 years ago when Marty and I took a ferry to Martha's Vineyard and biked all over the island. That was before cancer.

We parked in a lot that was some 1.5 miles into the route, so it would be another 13 to arrive at the end of the path in Bristol. Of course, we could have stopped at any point, say 5 miles or 7, and made the return trip. But I knew that once I started, I would have to go to the end. I rarely do things half way, even if it's the wisest course.

The first 10 miles were very pleasant. Nice breezes, beautiful views, bird song. Much of the path cuts through small suburban towns along the way, so there's no danger of nature overload. I took many mental notes on the numerous ice cream stands sprinkled en route. It was fun to peek into back yards (and some front) and compare the wildly diverse housing stock, from stately mansions to shotgun shacks. Soon, it began to dawn on me that every pedal forward counted for double. With some 3 miles to the end, I'd be biking an additional 6 miles. We pressed on.

By the time we reached Bristol, it was pushing 90 degrees. I was more than ready for ice cream, so we chose a place that promised 26 varieties of soft serve. The young woman at the counter looked at me like I was an alien (I probably looked like one at this point) and said they weren't serving ice cream yet, only coffee, donuts and smoothies/milkshakes. So I settled for a java chip frozen something-or-other piled high with whipped cream. This would be my fuel for the 13-mile return trip.

We had to make a few rest stops, and by the time we got back to the car, I felt pretty unenthusiastic about biking, but we made it unscathed. My bike was in worse shape than I was, with a rapidly deflating tire and a cracked gear shift. I won't be able to ride again until it's fixed, which I'm not crying about. Those final 5 or 6 miles were challenging, but I kept plogging along, knowing I'd gotten through worse things.

I'm celebrating Independence Day by doing nothing. Save for the hot dog I'll hoist to my mouth later on, I'm just saying no to any and all physical actvities.

Thoughts for a Friend

This is what I hate about leukemia. Just when you think that maybe, just maybe you've caught the little bastard, tied him up and thrown him to the sharks, he sneaks back into your life. Just when you're feeling better, building strength and confidence, even allowing yourself to think about the future, LB shows up and with one petulant blow, knocks down your carefully built stack of dreams.

My friend Ann is lying in a bed at MD Anderson in Houston. She was supposed to be buying a house and re-entering school in the Fall. She was just shy of 400 days post transplant when LB sneaked up and threw a sucker punch. I feel like it happened to me.

Ann will not take this lying down, not for long. She will gather all her strength, all her moxy, all her anger, all her everything and she will fight LB. It may take a few rounds, but she'll go the distance.

Ann's Fight continues. Love you Ann. Stay strong.