The Little Man on My Back

The chest pressure was short lived, but that annoying little man returned today and got on my back. It all began when I inexplicably slept for 9 hours and felt ready to take on the world. Bueno, I ran my usual two miles, ate breakfast (let's hear it for blueberries) and was heading for the shower when little man started barking orders at me. After cleaning two windows (inside and out), doing two loads of laundry and contemplating a re-design of my front garden, I bent over quickly and sent the little slave-driver flying. I finally showered and headed out to the bank. I also stopped in at CVS to buy more Windex since I'm fresh out due to the morning's labor. Impetuously, I bought a bottle of nail polish, "Hot Mango," because I like to have happy toes. Returning home, I did ten or eleven other minor things before embarking on tonight's dinner preparations. I couldn't decide between meatballs/sausage/spaghetti or fried chicken, so I decided to cook both. If Marty doesn't come home soon and save me from this madness (I swear, I'm NOT bi-polar), I'm either going to cook a third dinner or clean out the garage.

My toes look quite yummy.

Something to Get Off My Chest

There's a little man sitting on my chest today and I wish he'd get the hell off. He comes by every once in a while and assumes the lotus position on my upper chest area, quietly and persistently pushing down on my internal organs and making me feel off. Since I have no other symptoms of any kind, I'm not thinking I have heart disease or some other serious condition. I slept fairly well last night, so I'm not particularly tired, although little man drags me down a bit. I ran two miles this morning before it got too hot, and I felt really good.

Since I usually feel remarkably well for someone who had a transplant nine months ago, this symptom is very noticeable. It makes me feel like a slug or a sloth or your average teenager. My three are presently draped over the furniture in the TV room watching mindless drivel. I have two possible explanations for the pressure I'm feeling. One is that I'm suffering normal post-transplant lethargy. The other is that I'm literally feeling pressured by something but I don't know what it is. Free-floating anxiety has decided to hover over my chest, weighing me down and worrying me enough that I'm writing about it.

Here's hoping that this post is therapeutic, that little man get's off my chest and does something more productive, like mow the lawn.

How I Want to Be Remembered

Don't worry. I'm not planning my funeral yet. Or anytime soon. The idea for this post came from a question posed by Leroy Sievers in his blog "My Cancer." Unfortunately, Mr. Sievers is getting uncomfortably close to thinking about his memorial service.

I would like to be remembered as someone who could move personal mountains, meaning I was always up to the task and could even light a fire under those who didn't share my enthusiasm. I'm pretty sure I was born with this tenacious trait. I humbly recognize I will not be able to move the final mountain.

I would like to be remembered for my sense of humor, without which I would not have survived to this point. I inherited this from my grandfather who combined desert-dry wit with a highly cultivated morosity--the world was too much with him.

Miscellaneaous fortes: brewing a mean cup of coffee; turning a phrase; always choosing the right container for the contents; color perception and its various uses.

Things I love: the comfort of sylvan scenes (see Wordsworth); experiencing something new; knowledge. My family goes without saying, but I've said it anyway.

Things I can't abide: spectacle (this includes Broadway musicals, circuses, etc.); animal cruelty (did I mention circuses?); most isms, but especially racism, sexism, consumerism; willful idiocy.

Foibles: I think I'll save this for another day.

The Road to Leah

Yesterday, I drove to Amherst, MA to pay a shiva (condolence) call at the home of Leah's mom. Neither Leah nor her mom are Jewish, but Leah had met a rabbi at hospice and when he explained the meaning and purpose of the 7-day mourning ritual, Leah was all in. It was her final and wonderful gift to those who loved her.

As I mentioned several posts back, I never met Leah in person. I didn't know her mom either. But something compelled me to make the journey. On the drive there I thought about what I might say to the strangers I was about to meet. I couldn't think of much. I was too sad. When I arrived, the narrow wooded drive was chock full of cars. I entered the house and explained who I was to the woman I somehow sensed was Leah's mother. She seemed shocked at first. It was a rather complex and long-winded introduction, but she realized who I was and welcomed me with open arms. She immediately introduced me to her partner, Leah's other mom. They made me feel right at home.

After about 30 minutes, Leah's moms stood up and thanked us all for coming, explaining the concept of shiva, and how Leah had organized the event with the help of Rabbi Charlie. Then they asked anyone who cared to to share something about Leah. Turns out many of the people in the room didn't know Leah; they were there for the women who stayed at her beside 24 hours a day for two weeks until Leah found peace. After 4 or 5 people spoke, her mom nodded toward me. The reason I'd gone to Amherst became clear.

I spoke about meeting Leah on line on the LLS Discussion Boards. I described our improbable cyber friendship. I talked about Leahness, about her strength, her sense of humor, her generosity. The Leah I knew from on line posts and emails was the same woman the others had described. I'd been lucky to have experienced the essence of Leah. It was wonderful to be able to take part in this remembrance of a one-of-a-kind woman. Leukemia, I hate you.

I left behind an envelope filled with tributes to Leah from the LLS Discussion Boards, along with many messages of condolence. As I left her moms' house, I felt cheated and blessed. Cheated that my relationship with Leah was over, that someone I would have liked to have known better was gone. Blessed that I knew her at all, and was able to share the little I knew with those she left behind.

Cool News

During last week's heat wave, we developed a number of mechanical problems that tested our coping mechanisms. First the central air conditioning stopped cooling, followed by a copycat meltdown in the refrigerator. Then Marty's car overheated due to what we've now learned is a cracked radiator. Not only was it hotter than the hinges of hell around here, there was nothing cold to drink. Kinda reminded me of our honeymoon in an unnaturally steamy London where there was no A.C. and very little ice. The heat wave finally broke but the fridge stayed busted for 5 days forcing us to live out of coolers and replenish ice daily. This incredible hardship was duly noted by my 17-year old who quipped, "Except that we have Internet, it's like living in the Middle Ages."

Somewhere during that trying week, I went to the clinic for a check-up and was told my blood is completely normal, see ya next month. My feeling was that as long as it wasn't me overheating and suffering the breakdown, I could easily handle the other annoyances. Two out of the three cooling devices were repaired on Friday. Marty's Saab is a story yet without an ending.

The other bit of cool news is that Mark placed 2nd in the 800 meter run at the New England Championships in Maine on Saturday. I started weeping after the race ended, my sobs duly captured on videotape. Life had frayed my nerves and worn me down to a nub, but I still had some gooey emotion trapped in there that managed to leak out.

All's well that ends well.

Father's Day

There's a reason Hallmark is so successful. It's not easy to express how you feel about someone who's such an important element in your life. I've been sitting here for 15 minutes thinking about whether I want to hide behind metaphor or humor.

Today is Father's Day. Marty has more than earned his day of honor. He knows the agony and the ecstasy of being a father. With three kids ages 20, 17 and 15, he experiences pain and joy on a daily basis. In the past two years, Marty has earned Mother's Day credits, too.

Marty, you are king for the day. Your grand prize was going to be a brand new refrigerator-freezer, but we finally got that fixed on Friday. Your pickles are saved! After you go to the supermarket and buy yourself something nice for dinner, I'll cook it! The kids may or may not present you with gifts, but will hopefully make an effort to be a little less judgmental. You might actually know something today! I can't make any promises but you might get the respect you deserve, and possibly a new pair of bike shorts.

Happy father's day to the finest father there is. Even when we are pushing you a little closer to the edge, we love you!

The Best Friend I Never Met

It is with great sadness that I announce the death of Leah Ryan. Leah died from leukemia yesterday at the age of 44. She lived in Sunnyside, NY. She leaves behind her mother, Arlene, and her adored kitties.

I met Leah on the Leukemia & Lymphoma Society's Discussion Boards last Fall. She had recently relapsed and was contemplating a transplant. You can tell a lot about a person by the way they write. Leah's voice was very distinctive, and since she's a writer, her posts were wonderful to read. Back in December, Leah sent me an email, our first contact of a more personal nature. She had read my blog in preparation for her own transplant. We became cyber pals.

Although I never met Leah, I feel I know her. She was smart, funny, no-nonsense. She lived life on her own terms, and she died that way, too. We wrote to each other not just about our illnesses, but about coffee, books, our lives, writing, our fears. Like me, Leah was a type-A personality. When I wrote a blog post about how I can't sit still, she immediately emailed me, somewhat relieved that she was not the only post-transplant lunatic making to-do lists and driving herself nuts.

Leah meant a lot to the people who participate on the LLS boards. That's because she was supportive and caring. And of course, funny. Did I mention she was funny? Leah started her own blog after her transplant, and so much of it was hilarious. One particular act of Leah kindness stands out for me. Back in March, when I was freaking out about my perpetual fear of relapse, Leah immediately wrote to me and gave me a pep talk. She also gave me her phone numbers, and told me to call whenever I felt like it. Leah was one of the best friends I never met.

I would eventually call Leah, right after I read on LLS that she had relapsed once more. At the time, I couldn't decide whether calling her would be an unwanted intrusion or not. I had the sense that Leah was a very private person. Truthfully, I didn't even want to make the call, because what was I going to say? Leah being Leah, she immediately put me at ease and we spoke for ten minutes or so. She sounded exactly as I had imagined she would.

Leah, I'm glad you took the time to share yourself with me. Cancerland is a sucky place, but you've made it more bearable. You've touched me.

Peace to you, my friend.

A Worthy Cause

That's me with my dear friend Karen McIntyre from Central Florida. She came up for a visit on Friday, endured the heat and excitement of the State Meet, and has been wonderful to have around. We took a two-mile jog around the neighborhood early this morning when the temperature was a mere 70-75 degrees. Now it's around 90, which is pretty high for Little Rhody. Humid, too.

You might notice we're wearing Team in Training tops. That's because Karen has signed up to do the Team's Intracoastal Waterway Century Ride in October. That's 100 miles on a bike in the steamy Florida sun, all to raise money for the Leukemia and Lymphoma Society. I've benefited from the Society in so many ways. Some I can put my finger on: discussion forums, teleconferences, prescription co-pay program; others are less tangible but extremely important: research for new therapies and ultimately, a cure.

Karen could use your help, and you don't even have to get on a bike! Visit Karen's website today and donate whatever you can to this worthy cause.

Sweet (Hot) Victory

A year ago, I had planned to join Mark on a trip to San Diego where he was going to run the Rock 'N Roll Marathon for the Leukemia Society's Team in Training in my honor. Things did not work out that way. I was hospitalized once again for relapsed leukemia, and Mark went to California without me.

Yesterday, I sat in the stands at Brown University Stadium cheering for Mark as he ran the 1500 and 800 meter races in the Rhode Island State Meet. A year had come and gone, and I was miraculously still among the living. Among the living and broiling in 90 degree heat, covered with copious amounts of sunscreen and shaded by two umbrellas. The sun is anathema to me, as it is known to trigger graft versus host disease, something I strenuously avoid. Mark placed second in the 1500m with a personal best time of 3:57. He really wanted a state title though, and that came down to the 800m which had a talented field of of 5 runners in the 1:57 range. In a race that was harrowing to watch, Mark pulled ahead in the final 100 meters to win in 1:56.2.

This was a sweet victory, considering what's happened between last June and this. Here's a shot of my State Champion receiving his blue ribbon. Life is good. Hard, but good.

Wanted: Personal Chef

I like to eat. There was a time when I liked to cook. Not any more. The problem is, I can't seem to focus on menu planning, so each day arrives and the question "what's for dinner?" has no answer. We don't go hungry or anything; last night we ordered pizza. I think it's because I so rarely go to the supermarket. I send Marty with a list, but it's not the same as walking up and down the aisles to see what's available, what's on sale, what's new, what's fresh.

A personal chef would solve this problem. He or she would do the planning, the buying, the cooking. We'd do the fun part, the eating. I should not be complaining. When I was at the mercy of the hospital "chef," I wasn't very happy.

When we have guests, which we've been having a lot of lately, it becomes even more challenging. We can't let them starve. We do our best. Me, I'm going through the motions, but my interest in serving wonderful dinners is non-existent. I'm dinner-depressed. Do you think there's a drug for that?

The Weight

Yesterday was a full day. I crammed so much into it that I was beyond tired when I went to bed and could not sleep. Due to a temporary car shortage (4 drivers, 3 cars), I had to drive the boys to school at 7:15. Normally, my car's up for grabs since I'm usually at home. Yesterday I had places to go, people to see, two miles to run. I went to the library where I work (currently from home) to drop off copies of a grant I filed over the weekend. I made sure to stay in the non-public area. I was fortunate to see several colleagues, all of whom commented on how great I look. Then I went to play mah jongg and have lunch with a few friends. More compliments, more walking the thin line between "I'm fine" and "I'm in a black hole."

Thing is, I didn't feel so great. Nothing specific, just a sense that a weight was pushing down on my chest. I felt relapsy. Every now and then when I feel less than perfect, my mind goes to the dark place where all my fears reside. I think every person who's ever had cancer is highly familiar with this purgatorial zone. Most of the time, I keep the door barricaded, but yesterday I could not. Part of the problem was that my health was the preferred topic of conversation wherever I went. I felt pretty blah, but I didn't want to open that can of worms.

I was also thinking about what I was doing a year ago, lying limp in a hospital bed, enduring my fifth day of chemo. I was supposed to be hosting friends from New Zealand at a Memorial Day barbecue. Instead, they came to see me in the hospital. Yesterday, these friends were in town again, and this time our visit unfolded as planned, with the backyard cookout we had been forced to table a year ago. Naturally, we spoke about my illness, the transplant, my recuperation, the whole nine yards that I'd been trying to forget, especially yesterday, when I felt so listless. It was a long evening, nice to see old friends from another life, but oh so exhausting. I finally crawled into bed around 11 pm and couldn't sleep.

How would I feel today, kicking off the day with a significant sleep deficit? I'm pleased to report that I'm tired but the blahs are gone and the anxiety banished, at least for now. I don't want to add to the cacophony of complaints I hear every day about mostly silly things. I'll continue to put one foot in front of the other, and try to find something to rejoice in each day. Today, it might be something simple, like a toasted bagel with crunchy peanut butter for lunch, followed by a postprandial nap. I could use that nap.

Ted's Tumor

The public recently had the opportunity to watch Senator Kennedy go sailing shortly after he was diagnosed with a malignant brain tumor. We mere mortals might be asking ourselves, gee, could I have the courage to face cancer like that, with such dignity and aplomb? Sure we could, at times. We do so everyday, without the paparazzi snapping away. Every cancer patient has moments of despair mingled with triumphs large and small. The despair part's easier to recognize and comprehend, so I won't describe what that's like. There's a cancer saying that goes, I have cancer; cancer doesn't have me. Ted Kennedy at the helm of his boat captures this perfectly, although he might have been thinking: will I be doing this next Memorial Day?

Facing cancer has nothing to do with bravery. You have no choice when the diagnosis is handed down. You just do it. You have good days; you have bad days. You have days when you want to give up. You try to protect the ones you love by keeping your "game face" on. You do not want pity. You want to be treated like you're you, not some poor creature living under a death sentence. You want to laugh, and complain, and eat ice cream.

Carpe diem, baby.