Thursday, August 28, 2008

The Plog Unplugged

On August 26, The Plog celebrated its first birthday. A lot has happened in the past year, on so many levels. Thank you for allowing me to share my thoughts, feelings and occasional insights with you, my faithful readers. Writing my story has been therapeutic; your feedback in the form of posted comments, emails, phone calls or fireside/poolside chats has had a tremendous impact on the healing process. Medical professionals cured me on a cellular level. You’ve nursed me through the emotional peaks and troughs.

Next week, I have my one-year post-transplant check-up. After they drain me of what will seem like half my blood, a few vials of bone marrow will be extracted and analyzed. In mid-September, we should know the results of US vs. Australia in the 2008 Chimerism Cup Classic. I’ll also be receiving my first round of immunizations for various childhood diseases. All those years spent patiently and prudently acquiring immunity to nasty illnesses was rendered pointless by the pre-transplant chemo.

The Plog will not so much be unplugged as suspended in time. It was my year of living dangerously, and I prefer to keep those memories stashed in this virtual urn. I might check in from time to time to post medical updates or pithy comments. Frankly, I hope I don’t have to.

Lest you mist up at the idea that you’ll no longer be able to peer into my daily thoughts, activities, unsolicited opinions and pronouncements, despair not. I am pleased to inform you that I will be rolling out (tah-dah!) a new blog, possibly as early as next week. The bombast will not end, I promise you.

As soon as I write my first post, I’ll invite you to join me on my new chunk of cyberspace where I plan to blather about diverse topics including but not limited to books, running, language, parenting, food, current events, poetry, bouviers, and whatever’s stuck in my craw at any given moment. I hope to include links to some of my published work, if I can figure how to do the dang thing.

Stay tuned …

Monday, August 25, 2008

This whole leukemia business

can be dispiriting. I’ve been in it for nearly two and a half years. The best that can be said is that I’m still kicking.

On Saturday, we drove Mariel to Swarthmore College to begin her junior year. This involves driving through New Jersey, which begs the question, how does anybody live there? If you can call traveling at 20 miles an hour for what seems like eternity living. After hauling her stuff (including contraband kitty) to her room, and lunching with her roommate, we headed back onto the NJ Turnpike where we once again sat bumper to bumper, continuing into New York and over the Tappen Zee Bridge. New Jersey can’t even contain its traffic. The Tappen Zee bridge has a droll (to me) sign about a quarter way over the span that urges you to use the phone booth at the bridge’s center if you have doubts that life is worth living. I admit I was having black thoughts after lurching and sucking on fumes for hours. We stopped at a friends’ house in Larchmont for some much-needed rest. Just after midnight, we pulled into our driveway.

I was sad to see Mariel go, and sad to see she had not taken the destruction that is her room with her. It’s a classic example of a neatnik parent producing pigsty progeny. Sifting through the detritus she left behind, I unearthed a book by Junot Diaz. This made me think of Leah Ryan because she once wrote on my blog that Juno Diaz rocks, which if you’ve read his latest novel (The Brief Wondrous Life of Oscar Wao), you know he does. But thinking about Leah and her brief wondrous life made me sad. So did thinking about other people I know who are still sparring with the leukemia monster. The unnerving thing about the disease is that you have no idea if the bout’s over. You wait in the corner listening for the bell signifying yet another round. It may never ring, but you can never let down your guard.

The first anniversary of my transplant approaches. I am in a much better place than I was a year ago, but the toll has been steep. You keep saying you’re glad to be alive, but as time passes you think about what’s been lost. The emotional and financial burdens can be steep. You embrace life, but you can’t believe the sharp little knives that poke out and stick you.

See where bad traffic can lead?

Thursday, August 21, 2008

Beeyah Heeyah (Beer Here)

If you'd like to read something I wrote that has nothing to do with leukemia, see my article in today's Providence Journal.

Just for the record, it's Cracker Jack, singular. An editor changed it. Grr.

Wednesday, August 20, 2008


I caught a glimpse of myself in the mirror this morning. It's been six weeks since I've had a haircut and it shows. I know, I know - I'm supposed to say I'm happy to have hair. Bald was not a bad look for me, except that it was accompanied by a wan complexion, raccoon eyes, and nausea-induced grimacing. When your hair reappears post-chemo, it seems like someone else's. For people with straight or wavy hair, it tends to come back very curly. Apparently, a mechanism in the hair follicle crimps each strand as it emerges. No one seems to know why chemo does this, which is amazing to me when you consider the complexities of other things we have a handle on, such as nuclear fission.

It's shocking to have one hair type your entire life and then presto change-o, you have another. My hair was basically straight with a hint of wave. Not any more. I keep it very short, but the top eventually shoots up in a mass of wild curls. Everyone says it looks great, but I'm unnerved by it. This morning my hair is defying gravity. I woke up as Don King, my hair impossibly molded into an Olympic torch. Don King uses a lot of product to get this effect. I don't.

Strange fascination, fascinating me.

Monday, August 18, 2008

Why Blog About Cancer?

It's a daily reminder that none of us walks this road alone.
Leroy Sievers, 1955-2008

Journalist Leroy Sievers wrote a blog for NPR called My Cancer, one of six blogs I regularly follow in which cancer is the raison d'etre. On Friday, at age 53, Sievers died from colon cancer that had spread to multiple organs. He lived with cancer for 7 years and shared his journey in his blog for the last two. He wrote about his illness in a way that was extremely honest and at times humorous. He once mused about whether it paid to buy new clothes, given the fact that he might not get much wear from them. If you're living with cancer, this line of dark but practical thinking may be familiar. You're hesitant to give voice to it though because it would unnerve people. I know because I bought much-needed running shoes last month, and admitted to my husband only last week that I'd finally decided I was going to live long enough to justify the purchase.

Sievers stated that he believed his blog to be one of his greatest achievements. This is a man who's won many prizes and awards for journalistic excellence over the years. He was willing to reveal his sometimes painful thoughts publicly not just because his words inspired others living with cancer, but because it meant he didn't have to walk the cancer journey alone. We walked with him.

If Pulitzer Prizes are given for blogs, My Cancer certainly deserves to win one.

Thursday, August 14, 2008

I'm Committed

Shame on you if for even one moment you thought mental institution.

Yesterday, I put my money where my mouth is and registered for a local 5k event, the CVS Downtown Providence run, which attracts about 4000 participants each year. I was one of those participants in Sept. 2006. I remember getting misty-eyed during the pre-start speechifying. Not quite six months earlier, I'd been diagnosed with leukemia, and I'd spent four months in treatment. I'd lost at least ten pounds, most of it muscle. This was my chance to defy just about everything, including gravity.

I completed the race in non-record time, but I ran the entire 5k and finished somewhere in the middle of the pack. Since the race is sponsored by a local pharmacy chain, each participant received a bag of drugs (strictly OTC) along with their commemorative t-shirt. First aid items, protein bars and pain relievers, all useful to runners, were mixed in with tootbrushes, anti-diarrhea tablets and hand sanitizers.

Last year, I was unable to run in the race because I'd had a transplant two weeks earlier. Believe me, if I could have escaped for the day, I would have attempted to at least walk the course, just for the hand sanitizer. I vowed to run it in 2008.

It's 2008 and the race is just five weeks away. My goal is to beat my 2006 time, 30:28, and I'm shooting for sub-30 minutes. I will try to maintain my composure as I stand in the corral waiting for the race to begin. That won't be easy.

Tuesday, August 12, 2008

Victory Day (What's That?)

Yesterday we celebrated Victory Day. Rhode Island is the only state that has this official holiday marking Japan's surrender to the Allies and the end of World War II. It's a perfect day for back-to-school shopping, especially when it rains, as it did yesterday. I think Rhode Island deserves extra credit for not only commemorating a martial victory but for pumping $ into the economy, perhaps an additional electoral vote.

After dropping off the boys to catch the bus to running camp, Marty & I went for an ultra-high calorie breakfast at a local diner. Besides eggs and sausage, I had johnnycakes, a Rhode Island pancake specialty made from corn meal and served with maple syrup. And I wonder why I'm gaining weight! It's the fat, stupid.

Later in the day during a break in the rain, we redeemed ourselves by going on an 11-mile bike ride.

My friend Karen called to say she and her 17-year old daughter will be arriving today for an overnight visit. Karen was one of my caregivers post transplant. That's the link to her Team in Training fundraising website you see below my picture at top right. I can't wait to hear how the training is going for her upcoming century ride. Go Karen!

Sunday, August 10, 2008

What I'm Doing

Right now: drinking coffee and writing this post
Last night: eating lamb rogan josh and watching the Olympics
Today: reading the Sunday Times, watching the Olympics, pulling weeds when nobody's looking
Tomorrow: taking the boys to x-country camp
Planning: to go away next weekend
Feeling: 90%
Wearing: my pajamas
Reading: The Savage Detective by Roberto BolaƱo
Listening: for leaks
Obsessing: about T-cells and my slowing metabolism
Wondering: why politics is so skeevy
Knitting: my brow
Thinking: about everyone battling the Beast
Hoping: for a cure

Thursday, August 7, 2008

Science Fiction / Double (Cord Blood) Feature

The Rocky Horror Picture Show's got nothing on me.

Yesterday was my 11-month post-transplant check-up. My doctor informed me my blood work is 100% normal, but when you're a freak of nature, what's normal? He handed me a copy of my Dual Cord Molecular Chimerism Report which shows the numerous chimerism analyses done on my blood/marrow since my transplant. If I can explain this and you can understand it, I think I deserve a prize, possibly a Pulitzer.

A hematological chimerism test shows the genetic composition of your blood. Your garden variety stem cell transplantee will have no more than two blood lineages, the donor's and their own. A double cord blood transplantee is more in line with the original Greek mythological Chimera, a three part fire-breathing beast composed of a lion's head, a goat's body and a serpent's tail. However, 70% of cord blood transplantees experience a rejection of one of the cords (see Androids fighting) and end up with blood cells from one donor. The other rather non-darwinian 30% retain both grafts, which for unknown reasons appear to have signed a peace pact. The percentages of each cord vacillate over time. My cords, one from a boy born in Australia on May 5, 1999 (cord #1), the other from a boy born in Colorado on October 14, 2000 (cord #2), have been ranging from 32%/68% to 47%/53% with the most recent analysis (July 2008) showing 46%/54%. This adds up to 100% donor, but it is an analysis of the granulocyte lineage only. Granulocytes are a type of white blood cell which fight infection. For what it's worth, you will note that I have cells born in both the second and third millenia. Time warp, anyone?

Interestingly, the chimerism test is performed not just on granulocyte cells but on T-cells as well. T-cells are white blood cells that form the basis of our immune system and can live for decades. Tucked away in the spleen, the lymph nodes or wherever these babies hang, they actually remember past assaults on the body and spring into action as needed. I'm telling you all this because apparently, the pre-transplant chemo that annhilates the blood cells doesn't necessarily take out all the T-cells. The ones that survive are obviously savvy in the extreme. Chimerism analyses of my T-cells has shown that I still have a number of these ancient lurkers in my bloodstream, anywhere from 62% (December 2007) to 22% (July 2008). The remaining percentage are donor T-cells.

If you've followed this so far, a gold star is placed on your virtual nameplate.

I asked my doctor what all this means in terms of my ability to fight disease, and more importantly, stay in remission. It's possible my immune system will have superhuman powers. It's also possible the menage a trois will bicker and precipitate a battle royale. My doctor admits there's just not enough data to predict what will happen. I, it appears, am the data.

To summarize: I have 3 different kinds of DNA, fodder for a CSI episode, sci-fi novel or horror movie musical. I have 3 birthdays, a serious complication as far as my astrological chart goes. I mean, what is my sign? I have both XX and XY chromosomes, a condition that may or may not be covered by my health insurance. It appears I am Brad and Janet.

Don't dream it, be it.

Tuesday, August 5, 2008

The Slug Speeds Up

If you've been following this blog, you know that I run, or rather jog. The reasons I do so are legion but I'll spare you the list. When my transplant doctor gave me the go-ahead to start running again, I could barely make it to the end of my street, a little more than a half mile. Slowly I built up the distance and now I usually run 2 miles, sometimes 3 or 4. For the past two months, I've been running just about every day.

What I noticed though is that I'm pretty pokey. I wasn't fast to begin with, but I seem to have perfected a pace that just borders on "running"; any slower and I'd be walking. The reason for this (aside from adult-onset running, and taking my cue from the tortoise as opposed to the hare) is that I run alone, set no goals and think about everything except running. I own a fancy watch I can never remember how to use because I so rarely wear it. With all three of my kids currently training for the upcoming cross-country season, I decided it was time to get the lead out. The fact that I seem to have mysteriously gained 8-10 lbs. is a related issue, which I will save for another post.

Sadly, I discovered that my watch had died, possibly of neglect. I borrowed one of my kids' watches and set off to run a route I'd timed myself doing in the past. The results were truly embarrassing. I was averaging 11-12 minutes per mile. I've managed to get that down some but I have a way to go before I get close to my PR of 27:47 for a 5 k, an average of about 9 minutes per mile. Yesterday I ran 2 miles at what felt like race speed and managed a 20:38. Today I ran a little further at a somewhat slower pace: 3 miles in 32:49. A 5k is 3.2 miles, so I've got some catching up to do.

My goal is to run the CVS Downtown Providence 5k on Sept. 21 in under 30 minutes. It's good to set goals. My true goal, however, is to just run the damn thing since I was unable to in 2007, being tethered to an IV pole and all.

Tomorrow I take a break from running, my excuse being my monthly clinic appointment. Remember Little Man? He's on my chest today calling me Chubsy Ubsy and whispering other nasty things I'll not repeat.

Sunday, August 3, 2008

Master of None

Recently, I saw that google has launched a Wikipedia-type series of articles written by self-appointed/annointed authorities on whatever. They are called "knols" which puts me in mind of a grassy hillock, not a "knowledge unit." Since I'm fond of naming things (I used to be a copywriter), I'm fussy about what things are called. A good title, for instance, can send me into a swoon. Ditto with names. Knol sounds lame to me, although no brilliant alternatives come to mind. knowgles? wislets?

I thought about writing a knol, briefly, but I'm not an expert in anything. Sure, I'm competent in a number of areas, and there are a few things I probably know more about than the average bear, but I'm more a Jill of All Trades. I could write about how to paint a room, cook an omelet, construct an essay, sew a pillow or curtains, plant a shrub, groom a bouvier de flandres, cut men's hair, keep houseplants alive, or play mah jongg. Yawn. Hey, what about leukemia? I know more about that than I'd like to, but honestly, I understand very little about the disease, which is incredibly complex. I do know that it torments people.

So, no knols from me.

Friday, August 1, 2008

19th Breakdown

The breakdowns continue unabated in my house. One of the air conditioning condensers literally suffered a meltdown and had to be repaired yesterday. Last week, I took the high road regarding these it's-only-money problems. Health is all that matters, right?

Whine time. It's dispiriting to wake up every day and know you'll be writing a check or signing a credit card slip for yet another mechanical failure by day's end. Makes me want to go live in a yurt. I had a friend who did that once. Our pre-Civil War house in Brooklyn didn't give us this much grief. My first toaster oven lasted 15 years. Now I have to buy a new one every year. Blah blah blah.

Okay, I feel better. So what I'm tossing money into a bottomless pit.

Maybe I'm just a little crabby today. I have zero energy and I can't believe I have to figure out what's for dinner again. I just did that last night! Maybe the stove will stop working.