Mark Keeps Pace, Mariel Gets Personal Best, Harry Holds Down the Fort

Proud Mom at Ivy Hepatagonals

We drove up to Hanover, NH yesterday to watch Mark run the mile. He was in the fastest heat so qualified for today's finals which we unfortunately are not going to see. We had planned on staying the night nearby at our friends' Patty and Jeff's lake house, but they had no power so we made a quick stop to see them at their regular house (also without power). With heat from the wood stove, we were quite cozy, and we ate the bread pudding with rum sauce I'd made for dessert at house #2. We drove home from there, having to take several detours around downed power lines, flooded roads and other disasters. We arrived home safely.

Mariel called a while later to say she had raced well in the 4 X 800 meter, a personal best and a school record in the women's relay. She's so excited that her name will go on the wall at the Swarthmore athletic facility. This is a nice way to finish her running career.

My youngest stayed home and relaxed all day, taking care of the dog and generally being a good boy. He's waiting to hear where he'll be going to college next year. He says he's not stressed and I believe him. Go Harry!

Mark Gets 4th and Earns 4 Points for the Lions

Leukemia and Lymphoma Society

This non-profit group has helped me handle many of the changes that have entered my life in the past four years. I'm mentioning the Rhode Island Chapter in my book because they have been very good to me and my family.

To me, they gave financial and emotional support. To my son Mark, they gave a chance to raise money for Team in Training while running the Rock 'n Roll Marathon in my honor. It was an experience he'll never forget. To my daughter Mariel, they gave an unpaid internship where she had the chance to show off some of her skills--creative, athletic, verbal and written.

I met with Allison Brouilette today whom I haven't seen in a while. She's a busy woman kept up late at night by a 15-month old and working at LLS in a higher position than she had before. We talked about my book, and how perhaps she could help me promote it once it's published. It's nothing but good press for LLS and it's my target audience for readership. I still need an agent, so my friend Dougie says. I'm working on it. The business of writing is outside my area of expertise. I'd rather spend my time writing than selling, which I know I'll have to do eventually.

If you'd like to raise money for the Society through Team in Training, find your chapter here and make a call. I promise you, you will be changed forever.

Hot Java in a Fancy Cup

I dug this out of the basement yesterday. I wore a mask and gloves because it's dusty down there and I didn't want to take any risks. This lovely English china cup was just one of many I found stashed away in old boxes that had journeyed from Brooklyn (where I used to display and use them) to my sister-in-law's basement in Pennsylvania to Rhode Island where they sat unopened and unthought of until recently.

One of my tasks in preparing the house for sale is to go through everything I have in storage and decide whether to keep it, sell it, or give it away. These are family heirlooms though, so I should keep them, right? That didn't stop me from checking prices on ebay, where I soon developed a headache and needed a lovely cup of tea. I have six tea cups and six demitasse, each different. I should have a mad tea party and invite all my lady friends who appreciate fine frippery.

The truth is, I told Marty a while back that I was just going to get rid of all these things. I had no energy to sift through the boxes, and since I wasn't going to be around for long, didn't care what happened to them.

Silly me. Of course I care and I'm here and now I can commune with mother and grandmother. Too bad I got rid of all those gloves when mom died.

A Short Run

Last night I decided that today would be a fine day to run. The weather was supposed to be cooperative and the rest of the week looks wintry. I suited up and left my house at 7:30 am and started jogging down my street.

Boy, this feels pretty good. Nothing hurts. I'm breathing. I'm barely running and have to concentrate on maintaining a jog. The wind feels good on my cheeks as I roll up and down the gentle hills of Moosehorn. When I get to the corner (one kilometer), I throw up my hands Rocky style and head back home.

Three months ago when I attempted to walk/jog with Marty, I felt defeated. I was so weak, and my will was cringing under a rock. This morning, I felt like my old self, the old self that's been renewed several times and hopes this one's the keeper.

Torn Between Two Formats

Yesterday I sat down to blog, but opened my book file instead. I wanted to experiment with applying my blogging style to my usual essay style. This post is a compare and contrast analysis of technique, word choice, length (324 essay vs. 160 blog), tone, metaphorical flourish. This should be dull for my readers save for the handful who do this for their life's work.

The title was what I would use in a post. The rest is a litany of my day, a normal day that included food consumption, medication, beauty techniques, errands, a nap before a special dinner in a restaurant. For fun, I mention black holes. I tried to keep it breezy but it reads like a laundry list. No interesting wordage. To counterbalance the boredom that literally made my skin itch, I wrote a few poems about leukemia in a separate folder. Who will want to read these, I have no idea.

Now that I've unaccountably made this brief post as dull as dishwater essay, I expect no comments.

Book Notes

Yesterday I spent almost three hours writing my leukemia book. Part I is almost done and Part II is on its way. Considering my subject, the words flew without restraint from negative thoughts. I suppose I've already mentally processed a lot of this.

I know I have to layer in some medical info, which I'm capable of doing but having a difficult time deciding how much is enough/too much. When it comes to transplant science, how much do I explain about HLA matching? Speaking of transplant, I am almost to transplant #1 which means my blog enters the scene. A writer friend of mine says I should just turn the blog into a book. But this would not tell my whole story since I've been writing it for 2+ years and my tale begins in a year and a half earlier. Also, my blog is formulaic. I more or less write the posts in similar fashion. It makes it easy, breezy and light, and doesn't always represent the darkest moments. I feel I need to protect loved ones who might be reading it, including Marty and my kids.

The blog will be layered into the book, posing my greatest challenge. I won't be going for seamless as much as a different tone, some comic relief and a break for those readers who like short and succinct.

With all the time I have on my hands, I should be able to finish this up before the big move. I need an agent and an editor, but most of all I need the discipline to sit down Monday through Friday and crank out a few pages. This is what I've always said I've wanted to do. It's time to put my money where my mouth is.

Eight Years in Shreds

No less than six boxes of paper shreds sit in our dining room waiting to be recycled. There are bits and pieces of paper sprinkled throughout the house. What we thought would be a fun task is instead quite dull and messy. We still have two boxes of the past to julienne.

Still, it is invigorating. We have emptied the office of extraneous records and receipts. The file drawer no longer groans under the weight of worthless but possibly sensitive material. The office is now back to normal with a closet that is neat and roomy. While Marty was tearfully tossing his beloved electronic dinosaurs, I was busy on other closets. Why do we save gift bags? I have hundreds of them in every shape ever made. Goodbye to all that. I saved a few large ones to store wrapping paper and giveaway clothing. Four closets down, or mostly down, and four to go. The kids will need to be involved with their closets. They can decide what's precious and what's dreck. That leaves the tool closet which actually holds few tools but many other odds and ends I don't recognize. Marty will have to do that one.

The weekend was nice. Marty and I had a delicious home-cooked meal of steak au poivre Saturday night for Valentine's Day. Then we watched the Olympics, which were dull. Sunday we exchanged 20+ year-old Valentine Day cards I unearthed along with old letters and other mementos in my closet. My card to Marty was store-bought in 1986. Marty's was hand-made in 1987. We both wrote poems inside. Very cute, and very green.

Marty returns to NYC today after he finishes his remaining chores. It's going up to 40 degrees today so we'll get out a bit with Turbo. Tomorrow it snows, and I go back to the peaceful life, puttering around the house, bonding with Harry, who's on vacation this week, and doing whatever I want whenever I want to.

A Tangled Web

While waiting for my realtor to show up to take photos of the winter wonderland where my house is nestled, I attacked the office: the desk, the files, the chest of drawers parading as a guest nicety but filled with papers and finally, the closet. The closet is big, and we've crammed it full of papers, computer equipment, upright files and a few legitimate items such as bed linens for our guests. I spent three hours at this task, turning a neat room into a war zone. The closet is bare but the rest of the room is piled with shreddables, memorabilia, computer equipment--a dangling life.

I love to purge. We're buying a shredder this weekend and I'm gleefully going to mulch the past. There's a lot to save, too, including my kids' artwork, writings, old health records, report cards, many books, love letters to my husband, portfolio pieces I've written over the years, including a thick folder erupting with poems I wrote back in my darker days. I can't wait to sift through those ashes.

The computer pile is waiting for Marty to inspect. There's a huge box of junk that we moved here from Costa Rica, a tangle of wires and disks and whatnot. Next to the box is a scanner, three hard drives, more wires and enough software to sell on ebay except it's obsolete. I'm hoping he can part with most of this junk. Am I crazy to give him a choice? This is a man who cuts wires and plugs off electronics in case he'll need them for a future project.

Between the cords and the memories, the literal and the figurative have come together in a way I appreciate. The computer mess keeps my blood pressure up and the mementos take me back to a time where there was no leukemia, a time where there was just the wonder of my family, the fuzzy future, and my husband's hording of the once-upon-a-time useful, and now-that-the-future is here, tossable.

Spinning Infinity

Taking advantage of the prednisone punch, I've been multi-tasking like a maniac. The weekend was great. Marty came home late Friday and we were car shopping by 10:30 Saturday morning. We never found the dealer (because in my rush, I failed to notice the correct address), but we did stop at Allie's Donuts for two glazed crullers. I let Marty have half of one, but no more. I still have a bite left.

After lunch, we looked up the correct address for the dealer and set off to shop for a new car. We've decided on the Subaru Outback. We've had two Subarus in the past and loved them, so this was an easy decision. We're not buying this minute, but it's one less thing to think about. 2002 Mini Cooper and Mazda MPV are for sale.

By 6 pm I was on the couch and unable to think about the shrimp scampi we were having for dinner. Marty to the rescue! I talked him through it and a half hour later we had a delicious meal, sadly no wine for me. Marty put me to bed at 9:30.

Sunday started early, and I made Marty go out for fresh bagels before he wanted to. I was stahved, and I'd already snacked on the cruller and some fruit. After breakfast, we made a birthday card on the computer for our son Mark. After lunch we went out back and picked up storm debris. The fresh air was good, as was the exercise. Marty made felafel for dinner, which we ate early. Marty left at 6pm to drive to NYC and Harry went to a Superbowl party. Left to my own devices, I watched the game until the middle of the 4th quarter, going to bed before the most exciting part. I must admit I was checking craigslist for apartments after The Who rocked the stadium. I thought I liked The Who, but I'm tired of those songs. They looked pretty good for geezers, and Townsend is a Guitar Hero, no doubt. Crashed at 9:30 pm.

Today, my real estate agent came over to price the house and go over details. I now have a list of things to do which will channel my energy in a positive direction. No more toddler spinning around in circles.

Time for lunch.

Contacting My Donor

Shortly after I was discharged from the hospital in August, I received a letter from Dana-Farber wanting to know if I would like to contact my stem cell donor. I was not ready. I was shaky, could barely write or type, felt like hell and frankly, I didn't want to send a thank you note and soon thereafter kick the bucket.

On Wednesday, I decided it was time to make a connection. I looked for appropriate stationery, nixing the pad bordered with red roses, and the one with the horse logo at top. I found some pale blue paper and went with that.

The first attempt to write the letter ended badly. I messed up the date. The second went more smoothly, and I managed to write two paragraphs before the waterworks began. Fortunately, I moved the stationery out of the way so I wouldn't be sending my donor a tear-stained display of gratitude. Composing myself, I continued writing, trying to show what his gift had given me. Concrete things--not "life" or "a shot at a cure"--but how my donor's generosity gave me a wonderful Thanksgiving with my family, visits with friends, outings to see my children race, a smile on my husband's face.

It was a tough fight between the wordsmith and the thankful recipient. I tried to strike a tone somewhere between gushing gratitude and polished prose. Who knows how it will sound? My donor has the option of writing back to me, or not. Any correspondence we have must stay strictly anonymous until the one-year anniversary of the transplant. After that, we can chat by phone or even meet. I suppose at one year you're considered out of the woods and the whole enterprise a success. Jaded as I am, I assure you it ain't necessarily so. But a year more is better than a year less.

Introducing a New Drug

Did you know that losing weight or the inability to gain weight can be a sign of graft-versus-host disease? It has something to do with the malabsorption of food, especially fats. This would explain why no matter how much I eat, I don't gain weight.

At my clinic appointment today, my doctor hypothesized that my donor cells were affecting my digestive track, which would also explain the nausea that creeps over me now and again. I also have a faint rash on my arms that looks suspicious. My doctor said I could try low-dose prednisone, a steroid, to see if there's any effect with appetite and better absorption. If nothing changes, I'll go off the drug, which has some nasty side effects. I want to bulk up, but not like the incredible Hulk. I'm sure no one wants to be in my way if I experience rhoid rage. The dose is really small (40), so the changes shouldn't be that dramatic.

Everything else looks good: WBC=4.8; HGB=8.8; PLT=134. No need for a transfusion. Marty is relieved and will return to New York with a lighter heart. I have big plans for the rest of the week involving exercise and eating. But for now, a nap.