Tuesday, June 21, 2011

Fathers Day

Mark, Turbo, Harry, Dad, Mariel

I finally figured out how to use my new digital camera, which Marty gave me on Fathers Day for Mothers Day. You'll be seeing a lot more photos on this blog. There is great merit to the aphorism "every picture tells a story," even if Rod Stewart agrees.

We went out for brunch, I made a dinner with some of Marty's favorites, including an adaptation of his beloved Kahlua Pie. The original recipe calls for a melted bag of marshmallows (minus plastic bag) for which I substituted ice cream and whipped cream. All was well until I had to put the pie in the freezer. My freezer, a side by side model, isn't wide enough for the pie plate. I put it in the refrigerator for hours in hope that it would solidify enough for me to tilt it. No such luck.

Marty had the idea of cutting the pie into slices and freezing it in two small pans. So much for surprises. The moral is, according to my learned children, check the width of your freezer before putting something in it. This is especially true in a Manhattan apartment

Surprise news: Mariel got a job in Peru for a year as a tourism director for people who want to volunteer in Peru. She'll be living in tourist housing and get full board, airfare and maybe not much else, but she is psyched! She plans to apply to graduate school for the following year. I'm already missing her on Thanksgiving.

Friday, June 17, 2011

Good Bugs, Bad Bugs, Luck

Marty and I suffered a little G.I. distress last week. He was fine in a couple of days. My system is still screwed up.

I made the decision to stop taking the exjade, which makes me feel like a helium balloon and keeps me tethered to the loo. Since I've already off-loaded 6500 units of ferritin from my liver, and am fairly close to "normal," I thought I'd give myself a break. My doctor agreed. I thought this would help my digestive track. There is no change.

I think the good bugs in my digestive track are all on vacation. I remembered that Dr. Antin suggested probiotics for this issue last summer. I went into the local health food store in RI and asked for advice on which one to get, since there was a dizzying array of choices. I had no idea this was such a big problem. The woman launched into an epic description of all the probiotics they carried. My eyes glazed over. I perked up when I heard how expensive these pills are. So I went to CVS and found something much cheaper. I still have some. It's called FloraSmart and has 6 billion organisms per caplet. I plan to go to the local pharmacy here in the country and see what the pharmacist thinks I should take. I hope this works because I have enough gvh-related problems.

For those of you who haven't fallen asleep, I offer this tidbit of information I gleaned from Steven Pinker in an essay he wrote about the human genome and personality. Genetics are almost everything; environment, including culture, how your parents raised you has a small impact, but not as much as most people think; luck plays a small but important role, maybe 1%. Take my son Mark. Genetics made him a great runner. His ancestors include some very good runners. I encouraged Mark to run a 5k when he was 9 and he won for his age group. He ran the race every year and got better and better. Luck brought him to Rhode Island where he didn't make the soccer team so joined cross-country. Had he not moved from Costa Rica, where soccer is king and running isn't a school sport, he'd be a different person. He lives to run. It defines him in so many ways.

Wishing you good bugs and good luck.

Thursday, June 9, 2011

In Memory of Dori Brown

Dori Brown died June 7th, 2011 at the age of 43. She battled acute leukemia for four years, having a stem cell transplant that extended her life measurably. Unfortunately, the leukemia came back and she couldn’t get another transplant because she couldn’t get back into remission.

I never met Dori, but we are part of a sisterhood of leukemia and transplant. I came to know Dori through her husband’s blog, runfordori.blogspot.com. Jim wrote about how running helped him cope with Dori’s illness. He ran for Team in Training, raising funds for blood cancer research. He also wrote about his love of good food and wine, his children Kathryn and Will, his dog Pepper and the trials and tribulations of being a man in the 21st century. Jim revealed his frustrations with himself and with life’s challenges. A deeply religious man, he had a faith that was always apparent, but never forced. You could pray for Dori, or not. He wanted that connection, but didn't require it of his readers.

You can say I know Jim better than I knew Dori. But Jim is how I came to know this warm-spirited, big-hearted woman with an amazing smile. Dori liked to hike with her family. She raised money for cancer research. She became a Teaching Fellow after her transplant. I called Dori one day to ask her about the program, which I too had applied for and been accepted into. This is the only time we spoke personally. She gave me good advice, advice that meant more coming from a fellow survivor.

Dori fought the good fight, a fight I well understand. The worst part of the struggle isn’t the nausea, the pain, the fear, the boredom. The worst part is the mental anguish that comes from watching loved ones worry. Leaving this life is hard; leaving your family and friends exquisite torture.

I think about you a lot, my friend, especially as I run. I hope my little effort to raise funds for the Leukemia and Lymphoma Society bears fruit in the future, putting an end to this disease. Your smiling face will be on my race jersey as I make my way through the streets of New York, lighting the way.

Monday, June 6, 2011

Short and Sweet

Ferritin level is dropping like the a barrel of crude, 576 today. I'm now at 10 mg of prednisone a day. The end is in sight.