Wednesday, July 30, 2008

Peace, Sharon

I went to a funeral for a colleague this morning. We both taught ESL at the library. I'd replaced her two and a half years ago when she decided she wanted to cut back on her hours. She ended up returning to the position after my aml diagnosis. Her name was Sharon. She was diagnosed with a cancerous brain tumor around the time of my transplant. We were both treated at Dana-Farber.

Sharon had one final lesson for us today, relayed through the priest who officiated at her funeral mass. Most of us who've looked death squarely in the eye understand what Sharon wanted us to take away from the sermon: live for today. Don't cram so much into your daily schedule that you fail to experience what truly matters. Get off the treadmill. Take time to listen to birdsong while sipping coffee in a garden with an old friend, talking about old times. Live in the now.

The priest made a reference to a song that illustrated Sharon's message, that communicated what she wanted us to take away from her life's end. He assured us that neither he nor Sharon had been hippies, but that they had been teenagers during the Woodstock era. He didn't mention that the tune was by Crosby, Stills & Nash, but I recognized the lyrics he quoted. They were from the song "Woodstock," whose chorus urges us to heed Sharon's wise advice.

We are stardust, we are golden
We are ten billion year old carbon
And we got to get ourselves back to the garden

Monday, July 28, 2008

"I was only waiting for this moment to be free"

Just got back from a 3-day trip to visit friends in Pennsylvania who have a house on a lake. This was our first trip since my transplant, and it was not what the doctor ordered. My transplant doc is fairly conservative, and although I generally hang on his every word, I'm beginning to chafe at many of the restrictions I've lived under for nearly 11 months.

Here are some of the no-no's of my mini-vacation:
contact with children
a martini
dinner with 10 people
eating slightly underdone steak

In my defense, I'll assure you that I obsessively and scrupulously applied sunscreen, as well as hand sanitizer. I did not have close contact with the children in question, my nephews ages 2 and 4. They appeared quite healthy, and we were mostly outside. I have no explanation for the martini (which was delicious), and all I can say about the steak was that it was much better than the gray stuff I've been gnawing on.

Counter-balancing these forays into medically questionable territory, I:
jogged a total of 7 miles
biked 5 miles
slept late
ate well
socialized with family and friends
forgot about cancer

I appear unscathed, although I had a very realistic dream last night in which I was tormented by a sore throat and hacking cough.

Next time I'll fly a little further from the nest.

Friday, July 25, 2008

She's Gotta Have It

Perhaps I should begin with the Serenity Prayer. The events of the past two days have been sobering: I am an Internetoholic. On Wednesday, powerful thunderstorms streaked through Rhode Island unleashing the usual host of biblical plagues, along with some thoroughly modern retributions such as power loss.

We only lost power for a half an hour or so. As one dog cowered in the garage, and the other hid in my closet, I was feeling in control. I was still in emergency preparation mode due to our recent dry spell. (See Water Woes) Re-filled containers of water stood ready and waiting; we’d stocked up on Poland Spring. The power blinked on and off for awhile but returned full force before dinner. Just as we finished eating, a thunderstorm raced through the area. I counted six seconds between flash and clash, mostly just for fun. The very next bolt struck somewhere in the woods out back. Awesome. Power dimmed, surged, dimmed, surged. We lost internet connection and the TV flicked off.

We’d gone two whole days without having to repair something in the house. Over the last six weeks, the air conditioning, toaster oven, refrigerator and water pump have died. Water has streamed forth from the ceiling. I’ve maintained my equanimity throughout the inconveniences and the repair bills. But yesterday when I woke up and found that the Internet was still down, my morning routine derailed, I felt a wee bit desperate. I called our cable company and spoke to a technician, BEFORE my first cup o’ jo. An hour of troubleshooting revealed that the modem was dead, no doubt zapped by the many power surges we’d experienced. The thought of a day without email, blogging, visiting and posting on various sites gave me a mild case of the DT’s. Until the modem meltdown, I’d never heard of an ethernet cable. I suddenly wanted to plug it into my veins.

I went to Best Buy and scored a new modem. I’ll spare you the ugly details about the installation, other to say that with the help of an extremely patient telephone technician named Jimmy, I somehow managed to restore Internet connection. When The New York Times appeared in my browser I nearly wept. I’m pretty sure Jimmy was pretty close to tears himself.

I don’t spend that much time online, I swear, but I guess I have a problem. Much like my morning coffee, I’ve gotta have it. Be honest, dear readers. Ask yourselves: how many blogs do you have bookmarked? How many websites do you frequent each day? Can you spend a day or two or three unplugged?

I didn’t think so.

Tuesday, July 22, 2008

Water Woes

When we lived in Costa Rica, we became accustomed to the sudden loss of power, phone service or water. Losing water was the worst, but we learned to adapt to this fact of third world life. Last week we had water dripping from the ceiling in our family room; this weekend, we had no water dripping anywhere.

Fortunately, I retain the ability to remain stoic in face of these types of crises. It wasn't always that way. Before we moved to tropical paradise, I took many things for granted, including the constant flow of water from my tap. Costa Rica taught me how to go with the flow, so to speak. We placed flashlights all over the house. We had more candles than a hippie hideaway, and a stock of 5 gallon water jugs. It didn't hurt that we had a swimming pool. Cold bath anyone? Maybe it was the earthquakes that helped put power and water loss into the "no biggie" category. Certainly, a simpler lifestyle focused on family and friends gave us a different perspective on life.

One difference between Costa Rica and the good ol' USA is that when you have a problem here, you make a phone call and help is on the way. When I woke up Monday morning, I sprung into girl scout mode. With the next door neighbors' permission, I hooked up my garden hose to theirs and had water right outside my garage. We filled up buckets for toilet flushing and dish washing. We pulled out the emergency gallons of drinking water I had stored in the cupboard. The well company, which we'd called Sunday night, sent a guy over by 9:30 am. I was afraid our well had run dry, so I was greatly relieved when the technician performed a special test to gauge the water depth. He opened the well cap and dropped a pebble into the opening. Two mississippis later, he assured me the water level was at 50 feet, right where it should be. All we needed was a new pump.

Long story short, we had water flowing through our thirsty pipes before noon. I'd barely tapped into the emergency system I'd prepared. We were $1700 dollars poorer, but that seemed like a small price to pay for a shower. Costa Rican experience aside, I know there are far worse problems to face than a day without water, or even a failed well for that matter. In the scheme of things, it was a minor irritant. Living in the USA protects most of us from so many harsh realities that we become softies. We forget that there are people all over the world who don't have indoor plumbing or potable water. We get steamed if the cable cuts out or our cell phone dies. We drink at the fount of Starbucks and drown in a sea of consumption. Holy moly, I'm starting to sound downright Hobbesean. It's possible I've been reading too many church billboards.

Bottom line is, we forget what's important. My husband and I were talking about this last night in light of the spate of systems/appliance breakdowns we've had in our house this summer. My illness has tested us in ways that make most problems easily and happily managed. I'm fortunate to have access to topnotch medical care, and to be adequately insured. My family is healthy and thriving.

Battle-tested, we march forth.

Sunday, July 20, 2008


I'm always looking for food for thought, especially when I'm running. One day last week while I was jogging on my street, I noticed a sign on a tree that read "Whomever took my hanging basket, please return it." Hmm. Whomever. Shouldn't it be Whoever? What's the object of this sentence? Is it the alleged thief or the basket? This took me to the end of my street, which is where I turned around to head back home. Hmm. If I were making a sign to hang on a tree, would I have used whomever? Whomever absconded with my pendulous tuber vessel, would you please be so kind as to transport said treasure back to its lawful owner. Hey, gimme back my plant you ****. Generous reward offered for the return of my beloved Impatiens. In the midst of my grammatical reverie, I glimpsed a strange object just off to the side of the road. A hanging basket filled with wilted impatiens! I could do a good deed by telling my neighbor where to find her purloined plant. Wait a minute, I could be a hero and return the plant myself.

Readers, it's not so easy to run with a plant. Did that stop me? Naw. I spent the next half mile shifting the poor drooper from one hand to the other. I must have looked fairly odd to passing motorists, but I got a terrific upper body workout. You have to try it sometime.

My neighbor, who was outside watering her remaining plants when I called out to ask if what I'd lugged down the street was her missing hanging basket asked, where was it? Oh, by the side of the road, not too far. Must have been some kids. A bit stunned (and wouldn't you be?) the woman thanked me and hung the basket back on the tree, ripping off the thought-provoking sign.

Whoever's reading this post: may grammatical questions fuel your next run. Whatever.

Saturday, July 19, 2008

Breakfast of Champions

You're probably thinking Wheaties. It was better than Wheaties. Marty and I drove to a remote section of Rhode Island this morning to mark the 20th anniversary of LLS's Team In Training. Remote in the sense that we had no idea where we were, and it seemed a bit--how shall I put this?--Faulknerian. Maybe it was the weather (hazy, hot & humid), or the tired-looking buildings, but we felt we'd entered a time & space warp. All the breakfast guests were TNT alumni. We'd been invited because (1) my son ran a TNT marathon last year, (2) my daughter is interning at the local Leukemia & Lymphoma Society Office and helped plan the event, and (3) I'm a former honored patient.

I had a chance to catch up with some TNT folks I haven't seen in a long time. Their current honored patient is a Lymphoma survivor who has participated in a number of TNT biking fundraisers. He spoke eloquently to the rapt crowd about his illness, touching on the special hell which cancer patients (and their loved ones) inhabit while waiting to hear test results. I introduced myself to this man at the end of the speeches and told him I was a fellow survivor. Turns out he too had had a transplant at Dana-Farber, some four years ago. A year ago, feeling terrific, he discovered he'd relapsed. After completing a TNT Century Ride (that's 100 miles on a bike), he once again entered treatment. His latest scans prove him to be in complete remission.

The breakfast was yummy; the champions, superb.

Thursday, July 17, 2008

The Politics of Fear

This is not about this week's New Yorker cover. Enough has been spewed about that. This is about the politics of fear in Rhode Island, the smallest state with arguably the smallest minds. Maybe you've seen our governor moaning about illegal immigration on Fox News broadcasts. He's made it his mission to prevent these abominable creatures from robbing us blind. Rhode Island is going down in flames, but don't worry, at least we'll get rid of those illegals.

Yesterday, there was a "police action" (not to be confused with a "raid") that netted 30 some-odd alleged illegal workers at six courthouses around the state. While mothers from Guatemala scrubbed toilets, 50 ICE agents and 12 state troopers swooped in and bravely relieved them of their toilet brushes. Pardonnez moi, but shit happens. I don't even want to think what this courageous action cost, and I shudder to imagine what the sanitation facilities at our palaces of justice smell like. Who wants to clean toilets in the middle of the night? No Rhode Islanders I know.

Did I mention that the companies who employ these evil doers face no criminal charges? How were they supposed to know that the workers' ID's were allegedly fake? You'll be relieved to hear that 12 of the 30 were set free (wearing ankle bracelets) for "humanitarian reasons." The State didn't have the heart to see all those children placed in foster care while their moms are rotting in jail. Now, the reunited families can all starve together while awaiting a hearing and possible jail time. Ultimately, these bad mothers may be deported, but not before it costs a lot of dough, not to mention horrendous jury duty conditions for the patriotic people of Rhode Island.

I try to stay away from politics in this blog, but this just makes my blood boil. I have enough trouble with my blood.

Wednesday, July 16, 2008

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.

Monday, July 14, 2008

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.

Saturday, July 12, 2008


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

Thursday, July 10, 2008

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!

Monday, July 7, 2008

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.

Friday, July 4, 2008

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.

Wednesday, July 2, 2008

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.